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Chronic Lyme Disease in Humans

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  • #41
    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.

    Comment


    • #42
      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

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      • #43
        Originally posted by ClassAction View Post
        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?
        do you mind being more specific?

        I think that is a amino acid, or the precursor to one...
        "Kindness is free" ~ Eurofoal
        ---
        The CoTH CYA - please consult w/your veterinarian under any and all circumstances.

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        • #44
          From the awesome Wikipedia:

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

          From the NIH:

          http://docs.google.com/viewer?a=v&q=...a26-1TxU2kHldw

          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.
          Forward momentum!

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          • #45
            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.

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            • #46
              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!
              Forward momentum!

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              • #47
                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/...-lyme-disease/

                and here is my search for a Lime Litterate Doctore (LLD)
                http://mylifewithlyme.com/index.php/...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.

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                • #48
                  Originally posted by GaellentQuest View Post
                  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/...-lyme-disease/

                  and here is my search for a Lime Litterate Doctore (LLD)
                  http://mylifewithlyme.com/index.php/...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.
                  Forward momentum!

                  Comment


                  • #49
                    Originally posted by ClassAction View Post
                    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.

                    Comment


                    • #50
                      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?

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                      • #51
                        Originally posted by pippa553 View Post
                        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.

                        Comment


                        • #52
                          Originally posted by LauraKY View Post
                          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?

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                          • #53
                            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.

                            Comment


                            • #54
                              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!
                              Ridge Farm Inc.-full care retirement
                              http://www.horseretirementfarm.com

                              Comment


                              • #55
                                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.

                                Comment


                                • #56
                                  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.
                                  Forward momentum!

                                  Comment


                                  • #57
                                    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....

                                    Comment


                                    • #58
                                      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.

                                      Comment


                                      • #59
                                        On the bright side, my acne has never been better
                                        Forward momentum!

                                        Comment


                                        • #60
                                          Chronic Lyme *sucks* out loud.

                                          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.
                                          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.
                                          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. 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.
                                          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."
                                          However...even with chronic lyme...get any chest pain checked out asap!!! Always!
                                          You jump in the saddle,
                                          Hold onto the bridle!
                                          Jump in the line!
                                          ...Belefonte

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