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Obi
Feb. 18, 2010, 09:38 PM
Is anyone out there suffering from Chronic Lyme disease (human form, not horse). I was dx. in 2006 but was originally exposed in 2003. Currently becoming more physically and emotionally debilitated everyday. Just moved horses off the farm because I could no longer physically handle taking care of them. Riding...lol, what the heck is that? Last time I rode in October of 2009, I was bedridden for a week. Currently on antibiotic treatment with top Lyme doctor on East coast but treament is worse than the disease. Anybody been through or going through what I am in the middle of? I have lost my job, and about to loose my horses...any help or suggestions are welcomed.

spurgirl
Feb. 18, 2010, 10:18 PM
I have had Chronic Lyme for many years now....First diagnosed in 1992. About 2 years ago I also contracted Babesia/Babesiosis, which is another, equally horrible tick disease:eek:. I have been on numerous courses of pretty heavy duty antibiotics on and off for years...:cry:

The treatment IS hard, if the pills make you nauseated, try to eat crackers constantly, and small amounts of (healthy) food throughout the day. I always try to reward myself..."In 5 days, when I'm done with these crappy pills, I'm going to see that new movie", or, "I'm getting that new mystery out of the library by my favorite author"....Give yourself something to look forward to.

For mental fitness-and yes, I have memory loss, and "brain f*rts" all the time, and I'm only 45, keep reading, do Sudoku, crossword puzzles, jigsaw puzzles, anything! Try to keep your mind off the illness and working all the time. It is very easy to give in to the depressive aspect of what has been lost, try to think positive.

We have our own small farm. I'm lucky that I am still mobile enough to try and ride. I do have pretty moderate arthritis affecting my hands, elbows, and knees, but I do a lot of flexing all the time-especially s-l-o-w warmups in the morning. I walk the dog 4-6 times a day around the property (1/4 mile each walk), and still feed and muck the 4 horses here. I refuse to give up on that, but feel my next fall will be the end of my riding as well. I guess I just keep trying to plug along!!

I'm so sorry about the job loss-hope you weren't let go because of the illness? Staying active is so important! Also, if you cannot physically ride, and do keep your horses, are any able to be trained to drive? What about groundwork, or showmanship? Just for fun, at least? That way, you won't lose the very important connection-the happiness and love, that I'm sure your horses give to you....

My thoughts are with you. It is a dreadful disease, and I wish there was a magic cure!! Hopefully, one will come for our children.....

Couture TB
Feb. 18, 2010, 10:20 PM
I am so so sorry. I am to going thru Chronic Lymes. It was in remission. The IV drugs I was on last spring had me doing great, then after 6 weeks of it the doctor said I was cured. Now I am so sick again that I can not ride, it causes to much pain, I am having internal bleeding, sometimes I can't get out of bed for days, I have problems remembering if I have already talked to people and say the same things over and over again. I now can not train, and that is what I do for a living. I sent my TB that I own with another woman down to KY to a trainer to sell him as he was just sitting and he is a true upper level event prospect. I don't feel bad about my 2yr sitting. I figure maybe I will be healthy when he is riding age.

My doctor is trying to get the insurance company to let me go back on IV rocephin for at least 6 months. I am praying they let me as I am getting worse. The bad thing is the good days. The days where you almost feel human and then the reality comes crashing down again.

My email is vmattson@mattsontraining.net if you would like to talk with another horse person going thru this. Maybe we can try to keep each other from getting to bummed out

Couture TB
Feb. 19, 2010, 07:41 AM
Have either of you seen the documentry Under Our Skin? It is all about Lyme Disease. You can order it off of this website : http://www.underourskin.com/
or I know I checked mine out from the library.

Dad Said Not To
Feb. 19, 2010, 05:26 PM
Just diagnosed with chronic Lyme (and likely at least 2 co-infections, but haven't been tested for those yet) in December, but best guess is that I was infected at least 6 years ago. It's settled in my heart and is causing a severe arrhythmia, along with the standard joint/muscle pain, neuropathy, etc. The few Lyme-literate doctors in the area aren't taking on more patients, so I'm trying to get in to see a Lyme specialist in NY when SO and I go to Jersey to visit his mom in April. I'm currently seeing a naturopath, who has me on a crapload of supplements that seem to be helping a LOT, especially the vit. D-- I can really tell when I haven't taken it for a few days. My insurance won't cover any treatment beyond a month of Doxy, so I'm getting really concerned about the cost of treatment.

Chaila
Feb. 19, 2010, 08:31 PM
My father is recovering from lyme (hopefully!). We thought he was going to die before they finally figured it out. he was in the hospital and then rehab for months.

The one thing that we think has assisted the most with his recovery was a Tibetan healer. I happen to live next door to a Tibetan healer. People come out of her house looking so happy that I thought, what the heck? I made an appointment and my mom practically carried him over there. He could barely walk with a walker and wasn't eating (no appetite). Within 24 hours of taking her supplements he was eating again and he's doing a lot better. His energy is up. He still walks with a cane, but doesn't use it around the house.

He still has some serious nerve damage but the feeling is coming back. His energy levels are up a lot. He's also taking "cat's claw" as well which is a common lyme treatment in Europe. I think it's a natural antimicrobial. I think some of the stuff my neighbor is giving him help boost his immune system in general.

If you're in the Northeast, PM me and I'll give you the healer's info if your interested. She's in Boston. But they're not uncommon in the US. Best of luck to you. It's a terrible disease.

Couture TB
Feb. 19, 2010, 09:52 PM
I can not stress enough that anyone with lymes or knows someone with lymes needs to watch this dvd http://www.underourskin.com/ I have shown it to people that have watched me be ill, then not, then ill again, and it shows them what we go thru, what we are battling insurance wise, and emotionally.

Obi
Feb. 19, 2010, 10:18 PM
thank you for all of your responses! I thought I was on my own here even though that my LLMD mentioned that 25% of his patients are horse people.

Unfortunately, the job loss was enhanced by my health issues. Had I held on until my FLMA had run out, I would have been fired. The economy forced cutbacks in the company so I had to take it.

My lyme has settled in my back, my SI joint specifically. The nerve pain is horrific...no amount of pain killers touch it. I am currently seeking treatment with a LLMD who has just relocated to Washington DC but between the travel and the stress, it will take me over a week the physically recover. I am trying to seek out alternative options that do not include a multitude of medications (currently on 25 different prescriptions plus 12 supplements).

I now know why horses founder when they are treated for Lyme. The pain and what the 'cure' puts your body through is beyond horrible. I have the classic brain fog, pain in my hands and feet (as well as by legs and back). I have no energy and strength and the antibiotics have trashed my stomach. Has anyone done the IV and still worked around their horses? Is it possible?

I have ordered the DVD and cannot wait for it to arrive!

Thanks again for the responses! It makes me feel better that I am not alone on this. But for those that are on the other side of this, are you back to riding again? Is that even a possibility or should I let go of that dream>

Couture TB
Feb. 20, 2010, 10:24 AM
I did the IV in Jan of 09. My doctor wanted to do it for 6 months. The insurance company only let me do it for 6 weeks. The first 3 weeks were hell. Between the pain of the port and all the meds going in it and the drugs killing the lymes I didn't get off the couch except to use the bathroom, and some days with help. After that I actually started going out to the stable with my port in. Lunged a few horses, gave some lessons. I only rode the little lesson pony who I kknew would never put a foot wrong. You can't really ride with a port in your chest, to much of a chance if you fell because it goes into a artery in your heart that it could kill you.

My doctor is trying to get me back on the IV for the 6months I need.

I actually had a good day yesterday. Had pretty good energy and the pain level was not as bad (only a 7 out of 10!) Today I am paying for my good day. It hurts to even type. It feels like I have been run over with a truck. My joints hurt, the worse is my spine, pelvis,knees, and neck. And pain killers don't work for it either, that or else I have the highest vicodin tollerance there ever was!

I know how you feel. Everything hurts. Some days I can't even remember doing certain things, I will have the same conversation with a person 3 or 4 times before they gently ask if I don't remember talking to them about that. My chest pain/ heart palpitations have started again, not good. Last time that happend I would black out at odd times and had to stop driving my car : (

I am lucky to have a LLMD just 1hr away. He has cured tons of people. He keeps telling me 1 step forward 2 steps back for almost the first few years of treatment and then getting the insurance company to let you on the drugs that will cure you. I keep on being told there is light at the end of the tunnel, but somedays it feels like someone is switching it on and off just for the fun of it.

spurgirl
Feb. 21, 2010, 08:13 AM
The movie "Under Our Skin" was advertised in our local paper, it's playing for a few weeks at a small, indie theater...yesterday there was the first showing, and there were a few speakers there, with Lyme info....The place was mobbed, couldn't get near the place. I'm going to see the film today or tomorrow. Looks like it's worth seeing.

OP, only you can decide if you can ride. Myself, I take the winter off, and start the horses up very slowly in the spring, in my unfenced outdoor. I start by walking only 15 minutes, building slowly up to trotting, and then finally I hit my trails. It takes way longer now to feel fit. The aches in the hands and knees are pretty bad, but I just want to keep trying. I guess I will give in when the pain is unbearable, or I am injured in a fall...Both my horses are very safe, and well broke, and I am careful about what I do-no more long gallops, jumping, etc., just more sedate riding, with light canters. It is what it is!!! I feel if I give it up, it's all over...horses help keep me sane.

Best of luck to you, and all those who are suffering....

EqTrainer
Feb. 22, 2010, 02:26 PM
Has anyone ever tried overheating themselves while on antiobiotics? I had this mentioned to me when I was fighting chronic lyme and until I devoted myself to the hottub at 105 when I was on meds I could not get rid of it.

spurgirl
Feb. 22, 2010, 09:22 PM
Just got back from the seeing the movie "Under Our Skin", it's really worth seeing!! It's pretty scary though, watching how bad it can really get...My future does not look bright. I have to go for a checkup at my GP, and I'm going to have him run the tests to see if I'm positive again. I'm feeling pretty debilitated, and I usually feel pretty good going into spring.

Eqtrainer...Please elaborate:confused:? I don't know what you're asking...Do you mean you felt better after "steaming" yourself? I don't have a hot tub or sauna, but would try cooking myself/heating up under a few electric blankets (with supervision), if you think it would help....Please comment further:yes:

EqTrainer
Feb. 22, 2010, 09:30 PM
I was told - and I don't remember by who but it surely was one of my doctors - that since I had a hot tub I should heat it up as hot as it would go (105 in my case) and while I was on meds get in it every single day for 20 minutes. I think it helped immensely as I had not been able to eradicate it before then.

Couture TB
Feb. 23, 2010, 01:04 AM
I"ve tried the sauna method. Broke out in full body rash and within min had problems breathing. I can't even take really hot showers without starting to feel ill.

SPURGIRL- Glad you went to see the movie. Personally I believe the CDC people need to be strapped down, infected with lymes, and then after it gets to the point we all seem to be at on here, and the way the people in the movie are be asked if they think it is a real disease. Just remember thought that the regular lymes test at your GP that they give you has a false negative rate of 50% Do you have a LLMD near you? If I wouldnt' have found mine I would have been dead by now, and I am not kidding. I am just hoping they can get me back on the IV rocephin as I am now starting to have heart problems again : (

LauraKY
Feb. 23, 2010, 08:33 AM
I was diagnosed with Lyme Disease, Babesiosis and Bartonella eight years ago, as was my daughter.

Current doctor believes that I may have had at least the lyme for 30 years. Daughter for at least 20.

My daughter was the really sick one. From the time she was 12 until she was diagnosed at 22. She was always sick. Kidney infections, upper respiratory infections, pneumonia, you name it. Doctors finally wrote her off as a psych case. Then she developed heart problems. Thank god for her internist. He just didn't give up. Her knee finally swelled and bingo, tested positive for lyme on the Western Blot (never did test positive on the totally usless ELISA test). We and the insurance company spent over $800,000 to get to that diagnosis. Ridiculous. It was suspected at least 5 times, but, because of the poor testing, was never confirmed.

I finally tested positive by PCR.

We went through several doctors before we found a really wonderful one in Maryland. The first doctor, although very competent, had a protocol that he stuck to no matter what. When it got to the point where my daughter and I were unable to function, work, go to school, because of reactions to the meds, we found another doctor.

He immediately put my daughter on IM bicillin. The change was miraculous. She became a functioning human once again.

In my case, I was able to stay on oral medication, but he actually listened to how I was feeling and tweaked the meds to allow me to be able to function.

I'm about 90% right now and have some arthritis which may never resolve (but I am a whole lot older too). Daughter waivers between 80 and 90% but that is mostly because of other health problems due to a perforated colon (and that's another long sad story).

LauraKY
Feb. 23, 2010, 09:05 AM
Make sure you check out the LymeNet Forum: http://www.lymenet.com/

Lots of good info. Some nut cases (but isn't that the case with all forums?)

moonriverfarm
Feb. 26, 2010, 03:11 PM
Friesiancross I am so sorry to hear how bad you are feeling....it just breaks my heart. I cannot imagine being THAT sick all the time. I was really ill at one time and had my husband not taken over for four months I would not have cared what happened to my animals , that was how bad i felt. You cant give up though...keep HOPING and exploring options and know that so many people are thinking about you and, sadly, many share your pain. Please PM me if there is anything I can send you!

Couture TB
Feb. 26, 2010, 08:33 PM
Hi Everyone- I am going to see my doctor next Wed, they are hoping to get me on my IV meds ASAP as I have gotten worse. Let's just say having your husband have to help you off the ground if you sit down, and gasping in pain walking down stairs, and having your heart murrmur (which is really bad) come back isn't a good sign : (

Cross your fingers they give me my dang meds!

LauraK- I am asking my doctor about the IM bicillin when I see him

DressageGeek "Ribbon Ho"
Feb. 27, 2010, 12:46 AM
I am so, so sorry that you have to fight so much with your insurance to get the meds you need. That just is not right.

TrueGrit
Feb. 27, 2010, 02:05 AM
My lyme has settled in my back, my SI joint specifically. The nerve pain is horrific...no amount of pain killers touch it. ... But for those that are on the other side of this, are you back to riding again? Is that even a possibility or should I let go of that dream

Bi-lateral inflammation of the SI joints is the hallmark indicator for Ankylosing Spondylitis - which is what I have. It can be, and is often, triggered by the body's response to infection and/or trauma. I urge you to get Xrays of your SI joints, and if they show inflammation, then get to a Rheumatologist who is familiar with AS - most are not. You can find a Rheumy in your area, and details about Ankylosing Spondylitis here - http://www.spondylitis.org/ It wasn't until I went to a Rheumy who specializes in AS ( who I found thru that website ) that I got my diagnosis, AND meds to help. And, unfortunately, AS can affect all of your joints, intestines, and even heart.

I was on antibiotics for months - which literally saved my life, and then sought out my Rheumatologist since no doctor I saw had a clue. No one ever tested me for Lyme, so I can't offer any insight regarding that. And no doc could ever pin point the source or cause of any infection, but I was near septic before I got antibiotics. We went from doctor to doctor, and various hospitals for about a year and were unable to make any headway concerning diagnosis or treatment. One young male doc just looked at my age - 48 then - and said I was probably just beginning to go thru The Change! At least 10 docs failed me - even a run-of-the-mill Rheumy who dismissed my symptoms. My AS Rheumy, who finally made the diagnosis with Xrays of the SI joints, said I was one of his sickest patients. And commented that the average AS patient suffers for 8-10 years before getting accurately diagnosed!

Now I'm on Humira, loads of pain meds, and Celebrex when my gut can tolerate it, and I just bought my new horse after 20 years absence from riding, and started riding again for therapy - mental and physical. My riding is coming along slowly, and thanks to my "therapy horse" who takes good care of me, we're having a great time. I whine that I can't do what I used to do, and I still have various degrees of constant pain - but I'm a long way improved from barely being able to get out to bed to get to the bathroom, in just a few months! So yes, there IS hope!

Best wishes to Get Better Soon!

LauraKY
Feb. 27, 2010, 08:39 AM
Be very careful going to a Rheumatologist if you have lyme UNLESS they are lyme literate (and they are very few and far between). They do like to treat with steroids and there is nothing worse for lyme than steroids. Just really ramps up the infection and makes it even more difficult to treat.

Steroids do have their place, but not in lyme treatment.

According to my doctor, one of the symptoms of lyme is shooting pain from the hip down the leg...which I had. Which is now gone, with treatment.

LauraKY
Feb. 27, 2010, 08:42 AM
Freisancross, one the the first treatments given to my daughter IV that made a huge change was both Rocephin and IV clindamycin. The difference was huge in just a week. She went from being unable to walk to walking without crutches.

TrueGrit
Feb. 27, 2010, 04:19 PM
Be very careful going to a Rheumatologist if you have lyme UNLESS they are lyme literate (and they are very few and far between). They do like to treat with steroids and there is nothing worse for lyme than steroids. Just really ramps up the infection and makes it even more difficult to treat.

Steroids do have their place, but not in lyme treatment.

According to my doctor, one of the symptoms of lyme is shooting pain from the hip down the leg...which I had. Which is now gone, with treatment.

just wanted to add - A Rheumy who specializes in AS will NOT treat with steroids. But any Warning is always good to know.

And as far as finding a Rheumy who is Lyme literate - good luck. Here in Canada, I had trouble enough finding a doctor who knew much about their own specialty. My present Rheumy, the exception, of course.

Anyways, didn't mean to hijack the thread - just wanted to offer another possibility or complication from my own journey - like Mystery Diagnosis. :sadsmile: Especially since AS often manifests AFTER infection. Perhaps the Mayo Clinic can help?

Couture TB
Feb. 27, 2010, 04:31 PM
Freisancross, one the the first treatments given to my daughter IV that made a huge change was both Rocephin and IV clindamycin. The difference was huge in just a week. She went from being unable to walk to walking without crutches.

When I was on the IV rochephin it worked miracles. Now lets all just cross our fingers in hopes my insurance company gives it to me for the 6 months or so I need.

I am so glad and sad at the same time to be able to post about this with other riiders. Glad that there are other horse people who know what you are going thru and have been there, and sad that we are all there:no:

Couture TB
Feb. 27, 2010, 05:29 PM
For everyone that has had the IV stuff done did you have a pick line or a port? I had a port the first time and my chest area still hurst a year later. I am afraid that it is going to hurt even more if I get it put in again.

Did anyone who had a pickline have any problems with it for working? I mean mucking stalls, feeding, etc?

I went with the port the first time but now I see they have pickline protectors http://images.google.com/imgres?imgurl=http://www.qualitymedicalinc.com/PICC_Line_Protector.jpg&imgrefurl=http://www.qualitymedicalinc.com/crutch_cast_accessories.htm&usg=__XJlMB3X7bd2oPNpTWSkKkxOMXNQ=&h=150&w=150&sz=4&hl=en&start=2&um=1&itbs=1&tbnid=KKkqTObGy0guaM:&tbnh=96&tbnw=96&prev=/images%3Fq%3Div%2Bpicc%2Bline%26um%3D1%26hl%3Den%2 6client%3Dfirefox-a%26sa%3DN%26rls%3Dorg.mozilla:en-US:official%26tbs%3Disch:1

for protecting it when you shower and such. I just don't know which way to go. I had the port so that my arms were free but my chest muscle still hurts.

LauraKY
Feb. 28, 2010, 08:25 AM
Daughter had both. Much preferred the port to the pickline. Much more risk of infection with the pickline. She was even able to sail with the port (not to mention mucking, etc.)

True Grit, although Humira is not a steriod, it does tamp down your immune system, which is the last thing you want with Lyme.

As for the Mayo Clinic, those of you suffering Lyme probably know there are two schools of thought on treatment. One that says you can treat with 4 to 6 weeks of antibiotics and anything else is post Lyme syndrome. The other treats until symptoms are resolved. Mayo Clinic follows the first protocol vigorously. Not a good treatment option for a chronic lyme disease sufferer.

Couture TB
Feb. 28, 2010, 11:11 AM
Thanks LauraKY. I had thought there would be more of a chance of infection with the pickline. Just know that it is going to hurt quite a bit when they have to go thru all the scar tissue this time on top of how much it hurt when they took it out due to the missing muscle area.

LauraKY
Feb. 28, 2010, 11:20 AM
Other nice thing with the port, when you know the nurse is coming to replace the line, you can pull the needle and line and have a nice, hot, relaxing shower!
My daughter got to the point where she could stick herself. Gave her own IM bicillin shots too. But she's has the most incredible pain threshold (gets her in trouble a lot, though).

LauraKY
Feb. 28, 2010, 11:24 AM
GaellentQuest, make sure your docs leave you on oral antibiotics for at least six months after the IV. Then taper off. Have you been tested for other tick borne infections like Babesiosis and Bartonella? I know in a lot of cases, that is why the Lyme is so resistant to treatment...there are other infections going on also.

Couture TB
Feb. 28, 2010, 12:48 PM
I have Lymes, Babesiosis, and Bartonella. I have not been off antibiotics for almost 4 years. The second they pulled me off the IV meds he put me back on orals. I am very lucky to have a good Lymes doc near me and doesn't think I am nuts or faking it like some doctors think people are : (

I just hope the insurance compnay approves the amount of time he wants me on the IV this go around. Crossing my fingers

Couture TB
Mar. 4, 2010, 10:25 PM
Well I go in on the 11th for my consult to put my port back into my chest. I am going to get some time in the saddle before surgery even if it takes a bottle of pills to make it happen, since when it is I am banned from working the horses under saddle. Now it is time to play russian rullet with the insurance company on how long I can get treatment. Wish me luck

whicker
Mar. 12, 2010, 05:49 PM
I have a close vet friend who is active in this group. She suggested that you all might want to check it out. It gives a lot of state of the art info.

To give you hope, she has been quite sick with chronic lymes and is always actively working on it. She is still riding 100 mile endurance competition and placing and getting best conditioned horse awards. She is also one of the state of the art researchers in horse lymes. I recognize the many symptoms you have talked about, as ones she has dealt with.

http://www.ilads.org/

Good luck with the insurance battles!

ClassAction
Mar. 20, 2010, 12:24 AM
I recently had my second western done and now have slightly confusing results. The first lyme test (by western) showed 2 of 3 bands for IgM and 3 of 10 IgG. Now, a month later, I have nothing showing up.

I'm assuming that the hide-and-seek test results are fairly common (even by western blot which blows my mind a bit). My question is does this mean I've ventured into the "chronic" stage? My doctor is putting me on three weeks of doxycycline as of Monday. I realize we're none of us experts but experience counts for a lot!

2DogsFarm
Mar. 20, 2010, 06:54 AM
I work in Home Infusion billing/collection and from my experience can advise you to make sure the doctor and Home Health get IV Rocephin and/or Clindamycin
pre-authorized!
They will be asked to document need and provide physical history, progress notes, etc.

I just fought (and won!) a lengthy battle with Anthem BC/BS to pay for a patient's course of therapy.
Dr had started treatment with Clindamycin which they paid for, then when patient was switched to Rocephin suddenly authorization was required & claims started getting denied.

GaellantQuest - if you did not get pre-auth don't back down, they can
post-authorize treatment you just need to wear the bastards down with persistence.

spurgirl
Mar. 20, 2010, 09:53 PM
:( Had been feeling draggy again, woke up with a bit of Bell's Palsy on the right side of my face this week-common with Lyme. Ironically, the same morning as my Dr. visit!! Back on Doxy for 6 weeks...yuk!

Oh well, now my smile is as twisted as my personality;)

Hope everyone suffering is feeling better soon...:)

Couture TB
Mar. 22, 2010, 08:52 AM
Oh no spurgirl, hope your 6 weeks go well. I can't take Doxy, I crawl on the floor and vommit a few min after I take it.

I over did it this weekend. Bad girl. Sad thing is that over doing it was only going to 3 stores on Sat and Sunday and being awake and moving for more then 4hrs in a row.

I promised my husband Sleeping Beauty would get her rest and stay in bed today. Won't take much to keep that promise, I just woke up to take my oral meds to help heal my stomache (though many cameras up the bumm and down my throat says I am healthy, ya right) and then back to bed.

Everyone keep their spirits up, and us horse people can get thru anything! Insurance companies be darned!

2Dogs- I have to have tests every 2 weeks, and I keep a daily diary of how I am feeling (soon to be seen on my very own site to log how I use to be and how I am now, somthing to do )

whicker
Mar. 23, 2010, 08:56 AM
Gallant Quest,
By any chance were the 2 stores the tack shop and the feed store?:winkgrin:

You have picked a great user name. It does fit you, along with courage. I hope that the meds work quickly to clear the lyme brain. You bring so much to the forum.:)

Couture TB
Mar. 23, 2010, 02:59 PM
Hehe how did you guess? Though I had my husband drive. Turns out I am 'homebound' according to my insurance company. Not allowed to drive or go anywhere by myself. grrr. Beautiful day and I wish I lived at the place we are going to move to in May (ahhh 35 stall barn, 40 acres, and 3min from downtown) to at least brush my 2yr when I feel well.

Well everyone, Sleeping Beauty is off to get her 15hrs : )

Couture TB
Mar. 25, 2010, 10:05 PM
Started my own life with lyme blog to record how I am that day and such. Am a few days behind as I wanted to put in what was in my written journal the doctor wanted me to keep and to have it appear in order (newest day to oldest day etc) http://mylifewithlyme.com/

ClassAction
Mar. 26, 2010, 06:26 PM
I've just been diagnosed with neuro Lyme :( Glad to know I'm not just getting stupid but that I have bugs in my brain....maybe?

My doctor recommended Acetyl-L-carnitine for the brain stuff. I'm going to start with it tonight! Anyone else tried it?

Dad Said Not To
Mar. 26, 2010, 09:40 PM
ClassAction, I'm on Acetyl-L-carnitine with alpha-lipoic acid. It seems to really help with the "brain fog"; I can definitely tell when I haven't taken it for a few days.

Couture TB
Mar. 26, 2010, 09:46 PM
Never was on either of those. Have been on millions of ones though. Right now I am on the IV rochephin and it is working great. Now if only the insurance company would let me stay on it as long as needed. My doctor wants about 10-16 weeks, so far the insurance company has only approved from March 15th thru April 30th

EqTrainer
Mar. 27, 2010, 12:36 AM
I've just been diagnosed with neuro Lyme :( Glad to know I'm not just getting stupid but that I have bugs in my brain....maybe?

My doctor recommended Acetyl-L-carnitine for the brain stuff. I'm going to start with it tonight! Anyone else tried it?

:eek: do you mind being more specific?

I think that is a amino acid, or the precursor to one...

ClassAction
Mar. 27, 2010, 07:57 AM
From the awesome Wikipedia:

http://en.wikipedia.org/wiki/Acetylcarnitine

From the NIH:

http://docs.google.com/viewer?a=v&q=cache:8rUhJycLuOUJ:ntp.niehs.nih.gov/ntp/htdocs/Chem_Background/ExSumPdf/CARNLIPOSUPP.pdf+acetyl-l-carnitine&hl=en&gl=us&pid=bl&srcid=ADGEESj0TnImqu13j40KaBYEuNVWOLJ3lkMvOAn4SrkO 4OvTdP6hfl9jr1YhY1FiyVjyVv0BfbezKJGOswS3kKoanlANCg 7Sr3wdD-H9Tf5r39W7j7S2UNlGUnvsJvWBYuOkV8NXkvsv&sig=AHIEtbQHAdcZv4_7T5QRa26-1TxU2kHldw

When I say bugs in the brain, I mean that I'm having neurological symptoms like memory, focus, etc. issues. I thought I was just slowing going stupid or getting lazy (I'm a first year grad student and classes are just kinda sorta important) so I'm really glad to know about the buggies. Well, kinda.

LauraKY
Mar. 27, 2010, 09:39 AM
I called it Lyme brain. I would lose my train of thought before I got to the end of a sentence. Got lost all the time. Slurred words when talking. Also, would run out of breath at the end of a sentence.

Aggressive antibiotic therapy worked for me...nothing else. Never did IV, but I was on a lot of high powered orals.

I'd say I'm 90 to 95% and still on antibiotics (maintenance) 8 years later.

ClassAction
Mar. 27, 2010, 10:16 AM
I'm wondering about the IV versus oral routes. I have an interesting situation where I'm already on meds for another chronic condition (11 pills/day) and looking at going on isoniazid for latent TB. I really don't think my stomach can handle that many pills! I'm counting 7 in the morning and 9 at night already, without the INH.

The doctor I've seen is very good but reluctant to go the IV route. My parents are interested in having me see another doctor (Phillips in Wilton CT) for a possibly more aggressive course with IV treatment. I liked the first doctor and I'm reluctant to "shop" too much for doctors. Ugh. I wish there were a better, proven standard of therapy!

Couture TB
Mar. 27, 2010, 11:27 AM
It took me 3 years of oral meds before I found a doctor that would do IV drugs. And on top of that the insurance company fights tooth and nail to find reasons that you do not need the IV drugs. You have to remember lyme disease is also a political disease, lots of doctors get in trouble for treating with IV meds. Your best bet would be to have both lyme tests done, see if you come back positive on the first and how many bands you have on the western blot. Then find a lyme literrate doctor, as most every day doctors don't know how to treat lyme without just saying here is your few weeks of doxy now you are healthy.

Here is a link to about me first finding out about the lyme disease
http://mylifewithlyme.com/index.php/august-2005-the-discovery-of-my-lyme-disease/

and here is my search for a Lime Litterate Doctore (LLD)
http://mylifewithlyme.com/index.php/finding-a-limes-literate-doctor-or-lld-and-the-start-of-my-treatments/

And LauraKY is very right in that even after you seem clean you will be on oral meds for a few years, even if you get the amount of time you need for the IV drugs which is hard to do. We are already preparing for a battle since they say I am done with the meds on April 30th and my doctor wants to go to the end of May at least.

ClassAction
Mar. 27, 2010, 01:17 PM
It took me 3 years of oral meds before I found a doctor that would do IV drugs. And on top of that the insurance company fights tooth and nail to find reasons that you do not need the IV drugs. You have to remember lyme disease is also a political disease, lots of doctors get in trouble for treating with IV meds. Your best bet would be to have both lyme tests done, see if you come back positive on the first and how many bands you have on the western blot. Then find a lyme literrate doctor, as most every day doctors don't know how to treat lyme without just saying here is your few weeks of doxy now you are healthy.

Here is a link to about me first finding out about the lyme disease
http://mylifewithlyme.com/index.php/august-2005-the-discovery-of-my-lyme-disease/

and here is my search for a Lime Litterate Doctore (LLD)
http://mylifewithlyme.com/index.php/finding-a-limes-literate-doctor-or-lld-and-the-start-of-my-treatments/

And LauraKY is very right in that even after you seem clean you will be on oral meds for a few years, even if you get the amount of time you need for the IV drugs which is hard to do. We are already preparing for a battle since they say I am done with the meds on April 30th and my doctor wants to go to the end of May at least.

That's good to know about the insurance. I'm lucky that even though I have crappy student insurance, my parents are in a place where they can cover a lot even if the insurance won't. I just now have to balance feeling guilty about cost my parents so much money with health care style.

I'm seeing Dr Gloor in Rhode Island (recommended by a few people from different sources) and have an appointment to see Dr Phillips in May but I'm on his cancellation list. Dr Gloor seemed reluctant to do IV meds but all this oral crap is making it tough for me to keep weight on (nausea=not eating!). I'm already 15 pounds below where I was 9 months ago and don't want to lose much more.

Couture TB
Mar. 27, 2010, 02:42 PM
it tough for me to keep weight on (nausea=not eating!). I'm already 15 pounds below where I was 9 months ago and don't want to lose much more.

Lucky you, and I mean that and don't. All I did was vomit for 3 years straight right after eating because my stomach was so bad and the nasusea was so bad and I PUT ON not lost 75lbs grrrr

But no being nauseas all the time is not fun. Aren't you on any anti nausea pills? I am on prochlorperazine and take it whenever I start to feel nauses and it works really well.

pippa553
Mar. 27, 2010, 03:18 PM
I had positive titer in 1992 and then again in 1998 for lymes. The second time occurring with a new infection and a angry ring rash that spread to almost 8 inches. As far as I know the antibiotics took care of everything but then again I never was re-tested. I'm curious as to those with chronic lymes and condolences to those who have to deal with it, so I hope you don't mind if I ask a few questions. Does this come around from untreated cases for years or can this happen from the first case even though treated? How often do you get re-tested if you have had lymes in the past?

LauraKY
Mar. 27, 2010, 07:27 PM
I had positive titer in 1992 and then again in 1998 for lymes. The second time occurring with a new infection and a angry ring rash that spread to almost 8 inches. As far as I know the antibiotics took care of everything but then again I never was re-tested. I'm curious as to those with chronic lymes and condolences to those who have to deal with it, so I hope you don't mind if I ask a few questions. Does this come around from untreated cases for years or can this happen from the first case even though treated? How often do you get re-tested if you have had lymes in the past?

I don't get retested. It's based on symptoms. Testing is very poor anyway. Too many false negatives.

And it can be from a long standing infection OR from an improperly treated infection. People with co-infections like Bartonella, Babesiosis, Erhlichiosis and others tend to have more and worse symptoms. The co-infections must also be identified and treated.

It's very important to have a good doctor who is lyme literate and will listen to and treat your symptoms and life style. I've run into at least one that follows his protocol, no matter what. Sorry, still have to be able to go to work to pay for the insurance and treatment.

Couture TB
Mar. 27, 2010, 11:18 PM
I don't get retested. It's based on symptoms. Testing is very poor anyway. Too many false negatives.

And it can be from a long standing infection OR from an improperly treated infection. People with co-infections like Bartonella, Babesiosis, Erhlichiosis and others tend to have more and worse symptoms. The co-infections must also be identified and treated.

It's very important to have a good doctor who is lyme literate and will listen to and treat your symptoms and life style. I've run into at least one that follows his protocol, no matter what. Sorry, still have to be able to go to work to pay for the insurance and treatment.

And that is the thing. The tests are not acurate. And isnt' it fun trying to find a doctor that is willing to treat you as you need it and not bassed on tests that have a 50% false negative rate?

CoopsZippo
Mar. 28, 2010, 11:18 AM
While I do not have Lymes my husband does..... His titer came back as stage two. You know it is bad when they call you at 10pm from the lab with the results.

Right now we believe he is having a flare up. This time his is manifesting as a UTI. But he had been symptom free for about 2 years. I ran out a refilled his ongoing script for Doxy. He is bummed because it makes going into the sun impossible. I will be on him about wearing a hat and long sleeves.

I am also going to make sure he takes his B-12. It helps with his energy level and depression.

I feel for you all while I do not have it, it kills me to watch hubby suffer.

theoldgreymare
Mar. 28, 2010, 01:46 PM
Another chronic Lymie here (also have both strains of Babesiosis). I probably contracted it in 1994 when I was hospitalized for RMSF and was diagnosed five years ago. Both of my kids have LD and one also has Babesiosis and they could have contracted it in utero. I have been on every abx cocktail known to man. No IV treatment as insurance will only pay for 14 days and why waste the effort as I can not pay out of pocket. Am now trying weekly high dose injections of long acting Pennicillin although no results after six weeks. Will be moving into twice weekly injections of Rocephin to give that a try. Also on daily Malerone for the Babesia (which makes me deathly ill). My LLD also recommends hyperbaric treatment and has started some of us on oxygen therapy (neither of which is covered by my insurance and at least the hyperbaric treatment is out of the question).

I wanted to point something I learned not long ago out to those of you that do not respond to abx therapy. There is a computerized test called bio-energy testing (not bio-feedback) and it works based on Chinese medicine (something to do with meridian points, etc). This test was amazing. Without telling the practicioner anything other than that I had LD, it told specifically what organs were affected by LD and was spot on. It also measures what drugs are effective for you. My LLD and I learned from this test that I am rampant with candida albicans (although I have never had any type of yeast infection). If you are loaded with yeast antibiotics DO NOT WORK! I am now on Diflucan to try and clear the yeast out. If this test is available in your area, it is worth every penny.

Glad to know there is a good sized bunch of us on here with LD (not that I would wish this on anyone). Sometimes, I feel very alone!

LauraKY
Mar. 28, 2010, 02:27 PM
It's interesting that, now that I seem to be in remission, the best drug for me is Bactrim DS. Maybe it's the strain of lyme I have, or that it is helping cover with Babesiosis (did two months of Mepron, had to stop due to eye problems), then 5 months of Malarone.

ClassAction
Mar. 28, 2010, 05:29 PM
How do you guys keep your spirits up? I've just finished my first week of a four month course of oral antibiotics. It is the most difficult medication regimen I have ever been on (which is, alas, saying something). I threw up my "breakfast" about 11am. My body is telling me it wants food but...I just know what will happen!

And then I look at my pill box and my heart just sinks. BIG ucky pills, tough to swallow even when cut in half that do unspeakable things to my GI tract. Four months of this??? How do you do it? When I went to the barn today it was all I could do not to break down and cry in my horse's neck.

spurgirl
Mar. 28, 2010, 05:37 PM
I am on yet another course of Doxy....Yes, I know all about the pukey feeling, 2X day, about 20 minutes after taking them. Blech!!!

My strategy-Take the pill(s) with a VERY LARGE glass of COLD water. Drink the water s-l-o-w-l-y after swallowing the pill. Most people do not drink enough water when taking meds! After about 5 minutes I do eat a handful of Oyster crackers-about 15..... You are supposed to take the Doxy one hour before, or 2 hours after meals, but screw'em. That little bit of crackers gives a teeny coating to the stomach.

I've been on them about a week, and am feeling a lot more energetic, and my Bell's Palsy has not progressed. Only 5 or 6 weeks to go-I refuse to count those blasted pills....

Couture TB
Mar. 28, 2010, 05:54 PM
I tried the food with the doxy. Didn't help. Just gave me more stuff to throw up with the pills.

How we do it? Well I do it because I really would like to live to see 30, and it is worth just about anythign to get me back in the saddle and training again.

My stomach can't do ANY oral meds anymore, that is the only thing I have goign with staying the IV meds is the fact that I physicallly cant take the oral meds.

ClassAction
Mar. 29, 2010, 08:45 AM
On the bright side, my acne has never been better :lol:

MistyBlue
Mar. 29, 2010, 09:53 AM
Chronic Lyme *sucks* out loud. :yes:

But Class Action is right...Lyme treatment does do wonders for acne. :) I'm not sure about the why or what...but tetracycline or doxy seem to clear up really stubborn persistent cases of acne.

Treating it (and diagnosing it) can be a royal pain in the arse...especially if you're in an area of the country where it's not really common. I'm in CT (ironically not too far from Lyme CT, LOL) and many doctors around here only have to hear about chronic joint pain of fatigue and they western blot test you.

But when it goes chronic or undiagnosed for long enough...the damage for many folks is already done. After that for the those folks...best they can do is manage it. There's been some studies started on different management techniques...results aren't expected too soon yet, I don't think. Problem is...it can affect people very differently. I think they're up to close to 100 different symptoms...all of which can be caused by other things too.
Luckily for some folks...long term antibiotics and/or finding the right treatment for *them* can eventually lead them to being symptom free or even diagnosed as "cured" if symptoms do not come back in 2 years. But a lot of stress and/or a serious illness can bring it back for many too. :no:
For some folks a serious change in nutrition and exercise can be a huge help. In others physical stress can make it worse.
It's a damned if you do/damned if you don't disease.
I'm kind of a walking case of Lyme...I go to the CDC in my area multiple times per year due to the numerous individual cases of Lyme I've had. (5 separate tick bites by infected ticks)
I was being "cleared" of it the first few times...staying symptom free almost up to the 2 year mark...but hard to tell because I'd get bitten and reinfected again sometimes before the two years were up. :rolleyes:
Now I'm considered Chronic...up until recently they weren't sure if I was chronic or not due to the frequency of getting it all over again.

Some new findings that might not be well known everywhere else yet:
Lyme is carried by more than just deer ticks/black legged ticks. It has been found often now in dog/wood ticks too. And those are some darned common ticks! Those are the huge bloated nasty things you can find attached to or dropping off your dogs. So far they can not definitively prove that a dog/wood tick is transmitting Lyme, but if it's carrying it's a very strong probability. And could be the cause for so many canines in our area having positive Lyme. People don't get those attached for long due to their size...hard to miss a grape attached to you.
But...another finding is that it doesn't always have to be a tick attached to you for a long period of time before the Lyme is transmitted. Used to be thought that a tick had to be attached to a host for a certain length of time before Lyme was a concern. Not any longer. *Some* folks get the transmission very quickly...may be for the people who are more sensitive to bug or arachnid bites in general. (those who swell up from bites)
50% or less of people bitten by a Lyme tick will get the rash...do not rely on being safe because you didn't find a rash.

A fun side affect from Chronic Lyme is the OMG I'm Having A Heart Attack! Arthritis resulting from chronic or repeated Lyme can be linked to issues like costochondritis or teitze...tzetze...wait that one's a fly...I think it's the first spelling...syndroms. One is inflamation of where the ribs attach to the sternum and the other has the same symptoms without the inflamation. It can last a few days on and off...or for months...or be a cycle with it coming and going. And mimics a heart attack pretty well. :eek: :lol: :eek: I think some call it Chest Wall Syndrom...but I get them mixed up.
Sharp pains in the left side of the chest and/or breast and/or shoulder and back. Coupled with jaw or neck pain. And sometimes causing sharp pains down the left arm or numb hand and elbow. Hurts more if you lean or move fast...or when it hits you hurts more if you inhale. And guaranteed to scare the pee right out of you the first few times it happens. Until you get a few EKGs and find out your heart is fine...but your Lyme Sucks. :cool:
I'm sitting here typing this right now having fun by telling myself, "OW! It's not a heart attack. It's not a heart attack. It's not a heart attack." :winkgrin:
However...even with chronic lyme...get any chest pain checked out asap!!! Always!

Couture TB
Mar. 29, 2010, 07:35 PM
Well nothing like trying to be killed by an insurance company. I was told that I am approved for my meds till April 30th and then they would review how much long if I could be on the meds. Was told this by multiple pharmacy and insurance people.

Got a letter today saying they are now not approving my drugs as it is not a proven therapy. Now the battle begins.

At least we found a place that we can kinda afford the meds per week.

The fight begins.

F*ck

theoldgreymare
Mar. 30, 2010, 02:23 PM
.



Some new findings that might not be well known everywhere else yet:
Lyme is carried by more than just deer ticks/black legged ticks. It has been found often now in dog/wood ticks too. And those are some darned common ticks! Those are the huge bloated nasty things you can find attached to or dropping off your dogs. So far they can not definitively prove that a dog/wood tick is transmitting


Also carried by the Lone Star tick. My LLD has had dog ticks and Lone Star ticks tested by IGeneX and they were positive for Lyme and other tick borne illnesses.

Medicine Wheel (Ogilvie)
Mar. 30, 2010, 08:57 PM
Folks,
I'm sure some of you follow doctor reccs by the letter. And many of you search for other resources and self educate from wherever you can. I'm not a human doc, I'm an alternative med.veterinarian who has treated many dogs (and horses) for lyme ds.

Here is a perspective from the animal world, not to be taken as therapeutic directives:
Many of the animals are on doxy already. Diflucan (fluconazole) is for fungus/yeast, and has recently become part of human tx. One of the reasons for use is that the mechanism of action is to inhibit the growth of the early form of the lyme organism itself through the mitochondria. There is some consideration that without it, the antibiotics force the organism into quiescence in cells (go into hiding to recurr much later).
Advice to animal owners:
Alternative support starts with nutrition, as previously mentioned. Eat healthy folks!! Fresh food, lightly cooked, seasonally available foods, with a lot of variety. And it's not just what you eat, it's what you remove from the diet. Processed foods, canned foods (BHT etc from can liners), wash your vegetables.
Omega 3 fatty acids: from the best sources - norwegian fish oil, krill oil. This helps diminish inflammation of joints, heart, and tissue without causing stomach upset or erosion or kidney issues. Also aids regulation of the immune system.
Antioxidants - aid repair of diseased tissue. Examples are vit C and E, and many of the dark blue or red berries that are the hype now.
Digestive enzymes - certain kinds can be taken in between meals and are thought to be absorbed as larger molecules and have an anti-inflammatory action especially noted on arthritic or immune-mediated joint disease.
Unodegato or cat's claw - produced in a specific way - purported to have effectiveness against lyme ds.

These are approaches beyond conventional medicine (ie: in addition to), for animals. They might give you some ideas for investigation for yourselves. There are some docs (human) that will counsel beyond antibiotics and anti-inflammatories, and many naturopaths, esp on the east coast will have quite a familiarity with supportive measures that may help with nonresponsive ds. There are also lyme disease list-serves - tho take everything you hear on the net with a grain of salt.

I know chronic ds can be very debilitating. I hope this info can help some people.

MW

Couture TB
Apr. 1, 2010, 11:39 AM
For those of you with joint pain, I found shoes that work great. I was supprised that they relieved lots of my joint pain. I bought the Sketchers Shape Ups and they work really well. Relieve lots of my foot and joint pain.

siegi b.
Apr. 1, 2010, 12:41 PM
Thought I would chime in as yet another longtime Lymie.... I've had IV treatment twice - one via pickline, then via port - and must say that I definitely thought the port was more convenient and comfortable. I've also been on oral antibiotics for years - 4 different ones at the same time that then also changed every three months - and yes, it's a little bit like chemotherapy, at least the way I imagine it. Additionally, I had my spleen removed as it was infested with whatever stage of the Lyme bug it was that kept me from getting better.

I think the most important part of this journey is trying to keep your spirits up. I developed an attitude that said that I could do anything I wanted to, and by God, I did! I never quit taking care of my horses or anything else. Yes, some days were tougher than others, but then they are whether you're sick or not. Don't allow Lyme to define who you are and what life you can live.

A good life to all of you!

Couture TB
Apr. 1, 2010, 02:09 PM
Siegi- I don't want this to sound rude, but how did you get your insurance company to pay for the removal of your spleen? With how long I have been ill that is a question I will ask my doctor about. I mean mine United Health said I only get 30 days of IV Rocephin in my LIFE. And they seem to only like to have things looked at and treated for everything BUT lyme disease. They are more then happy to send me to any specialist to look into what it might be because of course everyone knows that lyme disease is treatable by just a few weeks of doxy and anything else is a different problem or you are nuts or it is just from aches and pains of daily living.:mad:

wateryglen
Apr. 2, 2010, 08:07 AM
Make sure you are consulting with an infectious disease specialist type of doctor for ongoing Lyme treatment & advice. Many regular docs are not up on the latest treatment recommendations. Make sure your "alternative" treatments don't interfere with your regular treatment.

And whether you agree or not; once the infection is cured - you are likely dealing with the effects of the damage the bacteria did when it WAS present. And if it'd crossed the blood-brain barrier then the ONLY way to treat it is with IV. IV antibiotics can go places that orals can not to kill the bacteria. There is no "remission" with infections - you are either infected or you aren't. You may have another infection from another bite or another kind of infection. But you get long term damage from many infections or it can spread to other organs and cause long term damage. EX: bacteria gets into joint space-inflames-does damage and that equals chronic severe arthritis (NOT chronic lyme disease or chronic infection). Or any infections (not just lyme) can go to your heart and cause scar tissue/valve damage with a resultant murmur.

It's chronic damage you are most likely dealing with so a knowledgeable rheumatologist CAN likely treat effectively the effects of chronic arthritis, joint pains and such. If you are not currently infected then maybe steroids will work. Be careful what you read on the internet!!! Get and find a doc you trust and do what they say!

Couture TB
Apr. 3, 2010, 07:36 AM
Make sure you are consulting with an infectious disease specialist type of doctor for ongoing Lyme treatment & advice. Many regular docs are not up on the latest treatment recommendations. Make sure your "alternative" treatments don't interfere with your regular treatment.

And whether you agree or not; once the infection is cured - you are likely dealing with the effects of the damage the bacteria did when it WAS present. And if it'd crossed the blood-brain barrier then the ONLY way to treat it is with IV. IV antibiotics can go places that orals can not to kill the bacteria. There is no "remission" with infections - you are either infected or you aren't. You may have another infection from another bite or another kind of infection. But you get long term damage from many infections or it can spread to other organs and cause long term damage. EX: bacteria gets into joint space-inflames-does damage and that equals chronic severe arthritis (NOT chronic lyme disease or chronic infection). Or any infections (not just lyme) can go to your heart and cause scar tissue/valve damage with a resultant murmur.

It's chronic damage you are most likely dealing with so a knowledgeable rheumatologist CAN likely treat effectively the effects of chronic arthritis, joint pains and such. If you are not currently infected then maybe steroids will work. Be careful what you read on the internet!!! Get and find a doc you trust and do what they say!

I am lucky to have one of the best LLD in the country only 1hr away. Yes, we are dealing with the infection still, which is why I am starting to feel better on the IV meds. Was almost cured last year, this is going to be my year. I know it. We will make this happen. Even my joints are getting better. I figure/ know there will be some damage that is now not fixable but my doctor thinks most of it will be if we do the right treatment. He has treated hundreds of people for advanced/chronic lym disease.

Trust me I don't believe much that I read on the internet unless it comes from another lyme suffering person, like on here. They say lyme is not fatal, well I know 3 people that died of it.

They say that a few weeks of doxy and you are in the clear, well the thousands of us that are like this should be proof it isn't true but until they change the guidelines our doctors are going to be fighting to get us healthy, keep their licenses, and try to get the insurance company to pay for some of it. :mad:

MistyBlue
Apr. 3, 2010, 08:48 AM
Make sure you are consulting with an infectious disease specialist type of doctor for ongoing Lyme treatment & advice. Many regular docs are not up on the latest treatment recommendations. Make sure your "alternative" treatments don't interfere with your regular treatment.
Yep. :yes:

LauraKY
Apr. 3, 2010, 01:42 PM
Make sure you are consulting with an infectious disease specialist type of doctor for ongoing Lyme treatment & advice. Many regular docs are not up on the latest treatment recommendations. Make sure your "alternative" treatments don't interfere with your regular treatment.

Maybe. Depends on the doctor. Have you kept abreast of the fight against the IDSA and their restrictive guidelines?


And whether you agree or not; once the infection is cured - you are likely dealing with the effects of the damage the bacteria did when it WAS present. And if it'd crossed the blood-brain barrier then the ONLY way to treat it is with IV. IV antibiotics can go places that orals can not to kill the bacteria. There is no "remission" with infections - you are either infected or you aren't. You may have another infection from another bite or another kind of infection. But you get long term damage from many infections or it can spread to other organs and cause long term damage. EX: bacteria gets into joint space-inflames-does damage and that equals chronic severe arthritis (NOT chronic lyme disease or chronic infection). Or any infections (not just lyme) can go to your heart and cause scar tissue/valve damage with a resultant murmur.

Yes, there is no remission, but the infection can be suppressed once it's at a low enough level. Just takes a stressor that overwhelms the immune system for it to come roaring back. Check the studies by Cornell on dogs and horses.



It's chronic damage you are most likely dealing with so a knowledgeable rheumatologist CAN likely treat effectively the effects of chronic arthritis, joint pains and such. If you are not currently infected then maybe steroids will work. Be careful what you read on the internet!!! Get and find a doc you trust and do what they say!

No, no, no. If you've had a long term infection, odds are that you have not completely cleared the infection. Steroids are probably the worst thing you can do. Find yourself a good lyme literate doctor. They are out there. Some are infectious disease specialists, most are not. Most follow the IDSA guidelines and believe that short term treatment will "cure" lyme. Any other symptoms are diagnosed as post lyme damage. Very few are looking for co-infections (Babesia, Bartonella, etc.) My daughter would still be in a wheelchair if we hadn't found a competent Lyme specialist. She now able to play polo again, is starting and training horses and runs a farm. Six years ago she was unable to walk and couldn't string five words together to make a sentence along with a whole host of other symptoms. And that was after 6 months on IV rocephin. It took other combinations of IV, IM and oral antibiotics to get the infection under control.

siegi b.
Apr. 3, 2010, 04:55 PM
I agree with LauraKY and know that sometimes it takes a very long time to clear up Lyme in people. The problem is that some of the antibiotics used are prohibitively expensive (I'm talking several thousands of dollars a month!!), and that's why the insurance companies don't want to authorize anything in excess of minimum treatment.

There are several initiatives going on to change this and headway has been made in some states. It's hard to argue with the fact that these expensive drugs help people that have been crippled by this disease, however the insurance companies don't like to part with their money.

P. S.: For all of you who are suffering from stomach issues because of taking antibiotics, please take probiotics along with your course of pills.

Couture TB
Apr. 3, 2010, 06:03 PM
LauraKY and siegi b are both right. You have to find a LLD, not just an infectious disease specialist. Most of those won't treat the chronic patients with what they need.

Yes, the meds are expensive. But not as expensive as the insurance company and pharmacy wants you to believe. I just got my months worth of Rocephin IV shipment with all my heprin and saline flushes, and my needles and dressing kits and it was $1,300 for the month. Now I am not saying that is cheap. That is a lot of money to come up with every month. But at a certain point you have to go do I want to live or die slowly or just live wishing I as dead? By the way the pharmacy we got it from sells it for what the insurance pays them. So that tells you the mark up on most of the drugs.

Right now I am typing this while my meds are hooked up to my chest port, and just got done hearing my horse went clean XC at his first event.

Oh and I am on week 3 and improving, but we are doing AT LEAST 12 more weeks of this if not more, that includes as of next week oral rifampin.

Couture TB
Apr. 3, 2010, 06:08 PM
LauraKY- Do you have a link to the study Cornell did on horses and dogs with lyme disease?

Personal Champ
Apr. 3, 2010, 06:55 PM
I do not have Lymes, but have a very dear friend who was diagnosed last summer with it. She has been told that she is suffering from "post lyme", and is seeking out some answers because she is constantly tired, has the brain fog, etc.

I will be sending her this thread, for sure. Hopefully she will join and contact some of you about your experiences.

LauraKY
Apr. 3, 2010, 07:55 PM
Here's one link that showed beagles exposed to Lyme, without symptoms, but with a subclinical infection (horse owners out there, be wary) actually had evidence of the disease upon necropsy: http://www.ncbi.nlm.nih.gov/pubmed/15904927?dopt=Abstract

An article at Horse.com referencing the Cornell study: http://www.thehorse.com/ViewArticle.aspx?ID=11929

Another, again at Horse.com referencing another Cornell study with tetracylcline vs doxy (noting a better response from IV tetracycline).
http://www.thehorse.com/ViewArticle.aspx?ID=4973

And a presentation by Dr. Divers (Cornell) to the AAEP:
http://www.ivis.org/proceedings/aaep/2003/divers2/ivis.pdf (http://www.ivis.org/proceedings/aaep/2003/divers2/ivis.pdf)

I can't find the one I was really looking for, but will post when I do.

LauraKY
Apr. 3, 2010, 08:04 PM
There is another forum: www.lymenet.org (http://www.lymenet.org) which is a support group type set-up with lots of good info. Like any forum, there are some "crazies", but there actually (like COTH) is a lot of good, helpful info.

GaellentQuest, I would post there with info about your troubles with the insurance company. I'm pretty sure that some of the posters may be able to help direct you in the best way to appeal. Lots of expertise in that area!

LauraKY
Apr. 3, 2010, 08:10 PM
I agree with LauraKY and know that sometimes it takes a very long time to clear up Lyme in people. The problem is that some of the antibiotics used are prohibitively expensive (I'm talking several thousands of dollars a month!!), and that's why the insurance companies don't want to authorize anything in excess of minimum treatment.

There are several initiatives going on to change this and headway has been made in some states. It's hard to argue with the fact that these expensive drugs help people that have been crippled by this disease, however the insurance companies don't like to part with their money.

P. S.: For all of you who are suffering from stomach issues because of taking antibiotics, please take probiotics along with your course of pills.

Second probiotics. Just don't take them at the same time as antibiotics (at least 2 hours after). We do it for our horses, also.

What I don't understand is that they, the insurance companies, seem to be perfectly willing to spend thousands ($300,000 in my daughter's case and 43 doctors) on tests looking for anything but Lyme. They just love to diagnose MS (which happened to a good friend, turned out to be Lyme) which can be expensive to treat also.

Fortunately, the insurance company we had at the time approved long term IV therapy and then IM Bicillin therapy. There's another study somewhere that said the IM Bicillin cleared the infection better in pediatric cases than any other treatment. I'll look for the reference. But, boy, oh boy, it can be painful (very thick).

Just can't figure out the logic...if there is any.

Couture TB
Apr. 4, 2010, 07:07 AM
Second probiotics. Just don't take them at the same time as antibiotics (at least 2 hours after). We do it for our horses, also.

What I don't understand is that they, the insurance companies, seem to be perfectly willing to spend thousands ($300,000 in my daughter's case and 43 doctors) on tests looking for anything but Lyme. They just love to diagnose MS (which happened to a good friend, turned out to be Lyme) which can be expensive to treat also.

Fortunately, the insurance company we had at the time approved long term IV therapy and then IM Bicillin therapy. There's another study somewhere that said the IM Bicillin cleared the infection better in pediatric cases than any other treatment. I'll look for the reference. But, boy, oh boy, it can be painful (very thick).

Just can't figure out the logic...if there is any.


That's what I don't get. They are more then happy to treat me for anything else. Run TONS of expensvie tests, for them and me, come up with nothing, BECAUSE IT IS THE DARN LYME DISEASE, and then refuse to allow more then 30 days of IV rocephin in my lifetime.:no::mad:

Couture TB
Apr. 11, 2010, 11:38 AM
On week 4 now of my IV rocephin. Doing a lot better. Though it is odd to have my eventer down being competed and trained by another rider. But anyways week 4 is down 8 more at least to go.

faybe
Apr. 11, 2010, 02:51 PM
I second (or third or fourth or twentieth!) going to a specialist who knows his/her stuff. I was diagnosed with Lyme by my incredible family practitioner after almost a year of severe fatigue and joint pain. A week later I ended up in the ER, where I tested positive for mono. The ER doc looked at my Lyme titers, laughed, and told me to go home and go to bed (for the mono). I actually did have mono, but thank goodness my FP sent me to a specialist and rode me about getting the right treatment for the Lyme (which she thinks made me susceptible to the secondary mono infection). I did 6 months of doxy; the ONLY things that worked for me nausea-wise were eating about 1/2 hour to an hour BEFORE I took it (after didn't help, up it all came) and being religious about the probiotics (I took the pill form and drank a glass of that Kefir yogurt/smoothie product when I got up in the AM and again before I went to bed). I also took N-aceytl-cysteine (recommended by my doc, bought OTC). I don't know if the literature's there to support this claim, but she had me take it to counter the effects of massive bacteria die-off (once the antibiotics did their job, the dead bacteria cell walls still in my system were making me feel just as sick and feverish as the live, whole bugs). I saw a difference on it, especially when I started a new drug or new dosage of the same drug. Concurrent with the doxy, I was also on a nitroimidazole drug for 4 months (believed to get the cyst form of the bacteria that will lay dormant and then, once you've finished treatment, flare up again). Adding to the fun, I also had a *severely* enlarged spleen (you could actually see it bulging under my ribcage, at its worst it was 350% it's normal size- the ultrasound techs had a good laugh when I came in to get it checked- we called it my alien) that kept me from riding, running, and generally living life even after I started to feel better. I've been symptom-free for almost 10 months, and can only imagine what many of you are going through. My whole life was put on hold while I was sick; it is a terrible, debilitating disease that doesn't get nearly the respect it deserves from the medical community.
My thoughts and prayers are with all of you, please don't give up hope! I found my horses to be a great release when I was able to get out to see them. Even when I couldn't ride, it was comforting to have that "normal" time, grooming them or just watching them graze. Good luck to all of you! I will be thinking of you and checking here for updates.

Couture TB
Apr. 12, 2010, 09:17 PM
I gave a lesson for the first time since having my surgery and being on meds tonight! I am on week 5 of my IV meds and doing better, but I am now on pasture rest instead of stall rest and if I don't behave myself my husband will put me back into the stall. lol I go see my doctor tomorrow and I think he is adding in the oral Rifampin to go along with my IV Rocehpin. And my husband did his first needle change in my port without the nurse here and did a great job : )

whicker
Apr. 13, 2010, 04:10 PM
congratulations to your husband! He gets gold stars for bravery!

You get gold stars for behaving yourself well enough to get out of the stall.:D

Please remember to keep your eye on the prize at the end of this procedure.

Getting through the weeks of rehab is like riding a test: focus on the immediate one movement or obstacle at a time, knowing it brings you closer to the goal.

I know you can do it well.:D

Couture TB
Apr. 14, 2010, 03:21 PM
Yes he does doesn't he?

I have been a very good girl when I am out of my stall, but am stuck in it today. Today is a bad day. Don't know if it is the die off from week 5 of IV meds or what.

You are right there is one immediate goal: Get healthy. That is what my husband says and he is right. I need to get healthy, and then in the future get back in the saddle.

Couture TB
Apr. 16, 2010, 06:47 PM
Updated my blog http://mylifewithlyme.com/ gives me something to do at the end of the day : ) Hope all you lyme riders are doing well, and if you can ride right now in this beautiful weather ride a little extra for me

Tazzie
May. 5, 2010, 09:10 AM
I was diagnosed with Lyme last year and treated with Doxy. I would have to look at my records to determine how long I was on, but it was something like 6 weeks.

I have a question - can Lyme "flare up" or do you have to get bit again to have symptoms? I recently had the same exact symptoms that I had last year, and am worried. I am doing some research on the websites included in this thread, but also thought I would just come out and ask.

LauraKY
May. 5, 2010, 10:00 AM
It's possible you were bitten again, but, in all likelihood you were probably inadequately treated. You need to find a lyme literate doctor. You can look on lymenet.org for recommendations or contact the Lyme Disease Association (LDA) for a list of physicians. If you're in Maryland, PM me, that's where my doctor is and he is absolutely wonderful! Just aggressive enough with treatment, but not too aggressive.

ClassAction
May. 5, 2010, 11:28 AM
Sometimes people can be misdiagnosed with chronic lyme when they actually have chronic fatigue or fibromyalgia. Just something to think about.

Obi
May. 5, 2010, 12:41 PM
Tassie- Yes, there is a good chance that you may have been re-infected or that the Lyme has come out of a type of remission. As you have been advised, you need to find a Lyme Literate Doctor who will review you symptons and perform the proper tests to confirm your health issues. There are very specific blood work tests that a "LLMD" will request that a non LLMD wont (Non LLMD's do not believe in Lyme and will most often bash the whole form of treament that LLMD doctors prescribe).

I was first exposed in 2003, and treated with doxy for 2-3 weeks and felt better. I slowly started to have the "I think I am getting old" symptoms until last march when I was bitten again by a tick, causing me to be bedridden for 3 weeks. So you could have been re-infected as well as be exposed to a different tick born bacteria that has caused your Lyme to reappear.

Unfortunately, Lyme Disease has become more of a political issue than a health concern, which is frightening. I think as horse owners, many of us have seen our horses diagnosed with Lyme, sometimes multiple times. So if the horses are getting (dogs too) why would humans be immune?

There is also a drama fest over long term antibiotic's being prescribed for Lyme (namely Doxy). Funny, dematologist prescribe long term doses of Doxy and other similar Lyme drugs for acne but it is not considered safe for people with Lyme.

And yes, you could also have Fibromyalgia or chronic fatigue so do not cross those off your list. You could also be developing arthritis (depending on your age) as well as Lupis, MS, ALS, Rheumatoid arthritis, HIV, Mono and a few other immune supressent diseases. Oh, and you could just be depressed too.

Sorry to sound snarky but to get an official diagnosis of Lyme is not easy and you may have to be tested for many of the diseases I just mentioned to rule them out. Lyme, especially chronic Lyme is not that easy to be diagnosed.

PM me for some other forums and doctors that I have either seen or know of people with Lyme have seen to make your possible diagnosis of Lyme (either if you have it or not) easier. Most patients with chronic lyme have gone through multiple physicians to get to the right one. I have been to 9 different doctors and thats a whole lot of co-pays.

ClassAction
May. 5, 2010, 03:04 PM
I brought up alternative illnesses because I had the reverse experience. I saw an LLMD who started treating me rather aggressively for lyme when it turns out I don't have it. I was on a LOT of nasty drugs for no reason.

I'm not saying you DON'T have lyme, just saying to have all the possibilities checked out. Long-term abx are nothing to sneeze at (even if it is more and more commonly done). I'm skeptical of everything by nature so I'll go through a huge round of testing before getting treatment.


Tassie- Yes, there is a good chance that you may have been re-infected or that the Lyme has come out of a type of remission. As you have been advised, you need to find a Lyme Literate Doctor who will review you symptons and perform the proper tests to confirm your health issues. There are very specific blood work tests that a "LLMD" will request that a non LLMD wont (Non LLMD's do not believe in Lyme and will most often bash the whole form of treament that LLMD doctors prescribe).

I was first exposed in 2003, and treated with doxy for 2-3 weeks and felt better. I slowly started to have the "I think I am getting old" symptoms until last march when I was bitten again by a tick, causing me to be bedridden for 3 weeks. So you could have been re-infected as well as be exposed to a different tick born bacteria that has caused your Lyme to reappear.

Unfortunately, Lyme Disease has become more of a political issue than a health concern, which is frightening. I think as horse owners, many of us have seen our horses diagnosed with Lyme, sometimes multiple times. So if the horses are getting (dogs too) why would humans be immune?

There is also a drama fest over long term antibiotic's being prescribed for Lyme (namely Doxy). Funny, dematologist prescribe long term doses of Doxy and other similar Lyme drugs for acne but it is not considered safe for people with Lyme.

And yes, you could also have Fibromyalgia or chronic fatigue so do not cross those off your list. You could also be developing arthritis (depending on your age) as well as Lupis, MS, ALS, Rheumatoid arthritis, HIV, Mono and a few other immune supressent diseases. Oh, and you could just be depressed too.

Sorry to sound snarky but to get an official diagnosis of Lyme is not easy and you may have to be tested for many of the diseases I just mentioned to rule them out. Lyme, especially chronic Lyme is not that easy to be diagnosed.

PM me for some other forums and doctors that I have either seen or know of people with Lyme have seen to make your possible diagnosis of Lyme (either if you have it or not) easier. Most patients with chronic lyme have gone through multiple physicians to get to the right one. I have been to 9 different doctors and thats a whole lot of co-pays.

Tazzie
May. 6, 2010, 08:14 AM
Thanks so much for the replies to my question.

I want to my PT yesterday and he is running bloodwork. Basic Metabolic panel, CBC Platelets & Diff, CRP, Sed Rate, Lyme Titer IGM, and Rocky Moutain Spotted Fever.

Hopefully I'll get the results soon. Yesterday all day I felt ok. But I was up last night almost all night aching from head to toe, very shaky and weak.

I certainly wouldn't rule out other possabilites such as fibro & mono, but I know it's not depression as I'm actually very happy right now with my work and personal life. And I just have too many plans to be this sick right now! Not that I have a choice.

Tylenol helps with the head to toe aches, but I can't live like this and really REALLY hate to be missing any time from work!

Tazzie
May. 11, 2010, 04:59 PM
I received my bloodwork results today.

Lyme & Rocky Mountain fever negative.

Sed Rate normal.

C-Reactive Protein 70.7 mg/l
WBC 2.7
Lymphs (Absolute) 0.5

My PT is trying to get me in with another doctor due to the CRP.

I still feel horrible. I'm functioning but I'm weak and shaky, my body aches and my appetite is off.

LauraKY
May. 12, 2010, 08:20 AM
Tazzie, I hope they're worried about your low WBC too. Were you tested for erlichiosis? That can cause a drop in WBC. I see you're in Area II, we're from Maryland and had between the two of us: Lyme, erlichiosis, bartonella and babesiosis. Pretty much everything except Rocky Mountain Fever. What test was run, Western Blot or just a ELISA? The ELISA titer has at least a 50% false negative rate.

If other things are ruled out, you need a lyme doc!

And fibro is not a diagnosis, it's a constellation of symptoms. They're not sure what causes it, but it can be a catch-all term for "I don't know what's wrong with you." Lyme and other tick borne diseases can cause fibro symptoms.

spook1
May. 12, 2010, 09:22 PM
Hi,
Well today I got my bloodwork back.......Symptoms were tired all the time,PAIN in the muscles and joint. days hen I just couldnt get up! I ride and run and that has come to not quite a halt as I make myself do it but sure do pay later.

Anyway I believed after reading about fibermylagia that fit me to a T. So I asked to be tested for everything to include HIV as do to my job I had a exposure. So today was told I tested positive for lyme and my CRP was off? but everything else came back good(thank God) I have also been seeing a ortho for what I thought was a pinched nerve who believes I have Arthritis and I am waiting for my MRI results for that. So Im wondering if these problems are related. I am being sent to a rheumatoidiologics by both Drs. I am just sick or being in pain ALWAYs and having no engery as lazy is not something I have ever been.

I am 40 and was a very fit person up til about a yr ago.

I realized there is no point to this post just needed to vent I guess.
thanks

LauraKY
May. 13, 2010, 08:19 AM
spook1, Lyme is a disease that you, as a patient, need to be very informed and proactive about. Do your research. Check out the Lyme Disease Association website. Take a look at lymenet.org (a forum for Lyme disease sufferers. You may be offered inadequate treatment. Unfortunately, there are two schools of thought on Lyme disease treatment in humans. One says treat till the symptoms are gone, the other says 30 to 45 days and anything else is post-lyme syndrome.

In addition, a lot of people have co-infections (Bartonella, Babesia, Erlichiosis, etc) which need to be treated in order to resolve the Lyme.

In my experience, a rheumatologist is not as informed on the treatment of Lyme disease as some other doctors. Unfortunately, a lot of infectious disease doctors also follow the 30 to 45 day treatment route. There's a lot of politics involved in this (along with the insurance companies) and for the life of me, I can't understand why.

Best of luck. A diagnosis is a good first step. By the way, May is Lyme Disease month, for whatever that's worth.

spook1
May. 13, 2010, 09:56 AM
I have been on line researching all I can.:) I did not realized the doxy would make me so sick>>>>>>>>>>:cry: ugh......

Tazzie
May. 13, 2010, 10:00 AM
I have been on line researching all I can.:) I did not realized the doxy would make me so sick>>>>>>>>>>:cry: ugh......

Spook - I bought an over the counter pre-biotic that I took with the Doxy. I tend to have general stomach issues and this helped 100%.

Tazzie
May. 13, 2010, 10:06 AM
Tazzie, I hope they're worried about your low WBC too. Were you tested for erlichiosis? That can cause a drop in WBC. I see you're in Area II, we're from Maryland and had between the two of us: Lyme, erlichiosis, bartonella and babesiosis. Pretty much everything except Rocky Mountain Fever. What test was run, Western Blot or just a ELISA? The ELISA titer has at least a 50% false negative rate.

If other things are ruled out, you need a lyme doc!

No to the erlichiosis, I'll add that to my list of possible things to test for. The Lyme test was the Western Blot.

As for the WBC - I'm not 100% what to make of it. I don't know if 2.7 is very low or just borderline.

I've been thinking about the CRP levels. I have an undiagnosed neck injury from 2005 (I was kicked by a horse in the face, the neck is a whiplash type injury). The neck is a constant pain that nobody can find a reason for (gotta love that). I get nerve block injections about twice a year and live on a decently low amount of vicodin daily. This could be the reason for the CRP levels, at least based on the little bit of research that I have done. As far as I know this is the first time that my CRP levels have been tested.

I did have extensive bloodwork checked in August 2009 when I was diagnosed with Lyme. At that time no CRP test was done, and the WBC was 6.1 & Lymph (Absolute) was 1.7, both normal. Nothing else abnormal in the August 2009 bloodwork except for the Lyme.

LauraKY
May. 13, 2010, 10:49 AM
I didn't realize you had already had and been treated for Lyme. If it was a short term of antibiotics, odds are it was inadequately treated. Lyme is great at hiding from a test. The Western Blot only measures antibodies to an infection. If your body is not mounting a defense it could be an active infection that would not show up on the Western Blot. Labs differ on the range for WBC count, but normal range is usually 4.8 to 10.8. So yes, it's low and definitely worth looking in to. Unless it's a test error, which is possible, something is depressing your WBC count.

This is from the RN Continuing Education Website:


"Leukopenia occurs when the WBC falls below 4,000. Viral infections, overwhelming bacterial infections, and bone marrow disorders can all cause leukopenia." It can also be medication related.

Don't let your doctor blow you off. If you're in Area II you should have some other medical options. My family went 10 years with improper diagnosis and limited treatment.

Tazzie
Jun. 17, 2010, 02:25 PM
Just an update.

I hadn't seen a doctor with my blookwork results b/c I couldn't find anybody close with an opening, and after research I thought that the sed rate was probably due to my undiagnosed neck pain.

Today I saw my physiatrist whom I see monthly for pain meds. I have him a copy of the bloodwork results for his records. Right away he was concerned about the sed rate and ordered some additional tests:

ANA with Titer
CBC Diff
RF
Sed Rate
TSH
Urice Acid/Serum

At this point I'm not 100% what all these tests mean, but I should have the results in a few days.

Currently I feel pretty good other than the usual neck pain issues that I have, and a growing tolerance of the pain meds.

Claudius
Jun. 17, 2010, 04:19 PM
I was diagosed five years ago with the classic bulls eyes etc. and doxy did not help, but in concert with Amoxycillan, stopped the pain and fatigue. I get a particular pain that is very indicitive, to me, that I am having a relapse...it is a sharp sharp deep pain down my thighs that debilitates me and causes me to have to physically pick up my legs one at a time to move them when it is at its height. My knees swell and are very painful and I experience profound fatigue. After three relapses I developed an allergic reaction to the meds and switched to Ciproflaxxin. Twice I have taken Cipro for flareups. My doubting Thomas GP says it should not work. But it does, or atleast has twice.
My relapses have coincided with returning north during foaling season. foaled 11 this year, with some traumatic ones, and lost one to VULTURES in the field that had been born three weeks prematurely....that blew my mind, and I rescued another from them four days later, but that is another story.....THEN the Lyme symnptoms set in . Obviously stress related.

It is very comforting to read that others have experienced these relapses. My GP does not believe in them, but blood work has ruled out her other theories.

Couture TB
Jun. 17, 2010, 09:06 PM
Thought I would do an update (might as well since I don't have much to do as I pump my IV meds into my chest for the next 30min)

Doing well. Actually can do a lot more then I use to. Actually was getting ready to start riding again, BUT now my doctor has put me back on the Rifampin while I am doing my Rocephin. He warned me that I was going to feel ill, well I feel ill!

It is (and I don't mean this the wrong way) nice being able to know and read about other horse people dealing with this. Most people don't understand how hard this is. You go from being active and fit, to not being able to do anything (and in my case gaining 70lbs!)

HOOF123
Jun. 18, 2010, 12:19 AM
HI.my sister has it ,and is on antibiotics ,i think thats right, and also someone i know said he had it, and how he got rid of it ,he was in a car accident ,and had a blood transfusion, and he does not have it now, because of that blood transfusion ,don,t know ,go figure.

Tazzie
Jun. 18, 2010, 07:25 AM
I get a particular pain that is very indicitive, to me, that I am having a relapse...it is a sharp sharp deep pain down my thighs that debilitates me and causes me to have to physically pick up my legs one at a time to move them when it is at its height.

Claudius - are you able to describe the thigh pain in any more detail? I ask b/c I have a persistant pain that starts high up by the right side of my pelvis in my back (almost "point of buttock" for lack of a better description), then shoots down my leg - down the back and center of my leg. Very hard to describe. Feels like a nerve pain that comes & goes. It started as the right side pelvis pain initially, and a few months after that migrated down the back of my leg.

Also - I'm so sorry about your foal trajedies. I think vultures are amazing (I know, I'm weird, but I love birds so I love vultures). However that is just a horrible incident to have gone through.

Claudius
Jul. 6, 2010, 01:33 PM
Thank you Tazzie, I appreciate your comment about my vulture experience. Never to be repeated I hope!!

My pain is down the front of my thighs...deep and unaffected by hot baths, cold compresses, Advil, Alleve or Aspirin. That is how I am sure it is the Lyme returning. Your symptoms sound like sciatic nerve issues.....I seem to have several friends with the same symptoms. Actually, the one who has gone the alternative therapy route has had the best results. Not herbs or lotions, but muscle therapy work....if you want to know the professional name of the method let me know and I will call her. good luck

theoldgreymare
Jul. 7, 2010, 10:44 PM
Claudius - are you able to describe the thigh pain in any more detail? I ask b/c I have a persistant pain that starts high up by the right side of my pelvis in my back (almost "point of buttock" for lack of a better description), then shoots down my leg - down the back and center of my leg. Very hard to describe. Feels like a nerve pain that comes & goes.

Tazzie...that sounds like sciatica to me as well. Claudius, I get a similar pain in my right calf. At first I thougt I had a blood clot, the pain was excruciating. I am not able to bear weight on my right leg without causing such pain that I think I could black out (and I am not a wuss). US and MRI revealed nada. Now I have realized that it starts when I am about to have a LD flair up. Nothing relieves it (sometimes a pain med will help diffuse it slightly) and I have to just wait for it to pass.

This disease sucks but I am thankful that I don't have something worse. Now if I could just stop wishing the pain of LD on the BC/BS beaurocrat that vetoed my IV abx (not even 30 days this battle) maybe I'd sleep better at night. They have been paying out for me with LD and 2 strains of babesiosis for almost ten years. You would think they would want this to be over as much as I do :no:.