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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    Exercise Lyme Away?

    For anyone that is interested I blogged about this a while back. http://sublymelife.blogspot.com/?m=0 Although the blog is mostly directed toward aerobic exercise some principles also apply to anaerobic conditioning. I'm not sure I fully understand the concept behind tissue oxygenation...
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    Petition to Recognize The Complexity of Lyme

    Please sign if you are willing. We are more than half way there. https://www.change.org/p/barack-obama-legalize-lyme-disease#petition-letter
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    Rifampin and Klonopin

    Not sure if your doctor would agree to this, but my LLMD has me taking both doses of Rifampin in the morning. There is some research that suggests higher blood concentrations (rather than sustained levels) have better bactericidal activity.
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    CD57 is 18

    Interesting. Did you have your C4a tested as well?
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    Chronic Lyme Petition

    This petition was posted in another forum. Feel free to pass it along. https://petitions.whitehouse.gov/petition/acknowledge-existence-chronic-lyme-disease-co-infections-and-develop-legislation-funding-treatment
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    CD57 is 18

    The lowest I have seen mine was 7 and since then it has gotten as high as 50, but I don't really notice any difference in my symptoms. I am still able to work full time (although it is a huge struggle) and have been told that it will takes years to get better. I'd be interested in knowing...
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    Lyme test turning positive after antibiotic treatment?

    Yes it is definitely frustrating. I got another round of tests back today and I am still negative on PCR and all bands on western blot from IgeneX (except the 41kDa) are negative.
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    C4a and Symptom Progression/Muscle Pain in Legs

    Hi all, Two part question: 1.) Has anyone noticed a correlation between their C4a levels and how they feel physically? My C4a dropped significantly over the past few months (12000 to 1200), but my symptoms are relatively the same. 2.) Since the onset my illness in late 2013, my leg...
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    Bartonella Rash reappearing...

    I think you are on the right track. ILADS suggests the use of a bactericidal abx along with an intracellular abx (specifically 2nd-3rd generation quinolones). http://www.ilads.org/lyme/treatment-guideline.php The first combination your doctor put you on did not include an intracellular abx...
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    Lyme test turning positive after antibiotic treatment?

    That's possible although I don't remember experiencing a herx reaction.
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    Lyme test turning positive after antibiotic treatment?

    That's actually why I am searching for a better test. I have also read a lot about autoimmunity and recognize that persistent symptoms may not be the result a persistent infection. I obviously do not want to keep taking antibiotics if this is the case. Unfortunately we don't have enough...
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    Lyme test turning positive after antibiotic treatment?

    Thanks for the info. I think I'm biased towards that approach because a lot of research studies that fail at cultivating bacteria from serum are successful at cultivating it from synovial or spinal fluid.
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    Lyme test turning positive after antibiotic treatment?

    There is diurnal variations in the number in healthy controls, as much as 60%, per the practitioners findings below: http://www.ilads.org/media/boston/slides/savely/savely.html However, I think the work done by Stricker provides credible evidence that there is some kind relationship between...
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    Lyme test turning positive after antibiotic treatment?

    I remember seeing the 30% in a paper that Dr. Joseph Burrascano wrote, but he did not cite any research for this figure. I was able to find published work that reviewed past research on Chronic Lyme. It contained controlled studies that observed seroconversion and seronegative patients with...
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    Lyme test turning positive after antibiotic treatment?

    Thanks for the info Duncan. I didn't realize that CSF tests were limited in usefulness to certain strains, although it's not much of a surprise since nothing is straightforward with this disease. I think I'll ask about the C6 test the next time I see my doctor. I also read about another test...
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    Lyme conference Dr H. Dr B. etc - a must read

    Couldn't agree with this statement more. There is just as much evidence to support the existence of Chronic Lyme as there is to refute it. And by Chronic Lyme I mean an infection that persists beyond the recommended treatment plan developed by the CDC/IDSA. @Vic. I appreciate your comments...
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    Lyme test turning positive after antibiotic treatment?

    Justy, sounds like you are hearing the same thing from your doctor as I am. I get hung up that the fact that several doctors witness this phenomena yet never publish their findings (or at least I have never come across this data). It would seem like publishing such data would be the nail in...
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    Lyme test turning positive after antibiotic treatment?

    Thanks for the suggestion Duncan. The only band that was positive on my Igenex western blot is the 41 kDa. I have taken this test along with the PCR 4 times in the last 7 months. In that time I have been on 4 different antibiotics, undergone 30 HBOT sessions, and have combined the Cowden and...
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    Lyme test turning positive after antibiotic treatment?

    Martial thanks for your response. My doctor makes it sound like this is a common occurrence. I have never seen someone talk about this on forums, nor are there any published case studies on this. You would think doctors would frequently document and publish these cases as proof that Lyme...
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    Lyme test turning positive after antibiotic treatment?

    I tested negative, and have continued to test negative for Lyme disease on the IgeneX western blot and PCR. However, I was highly suspect of having lyme disease since I had four active co-infections, an NK CD57 of 7, and a C4a of 13000. I also lived in Lyme endemic regions (including Lyme CT)...
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    sleep in patients with chronic infections

    Helen, my experience with sleeping medication was that nothing worked or the side effects outweighed the benefits (Trazodone, Seroquel fast release, Seroquel slow release, Ambien, low dose Amitriptyline, and melatonin to name a few). At one point my psychiatrist had me combining sleeping...
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    sleep in patients with chronic infections

    I had a similar experience with my PCP. In his defense he did not know I had lyme, but believed all my symptoms were the result of poor sleep. On these grounds I agreed to do a sleep study. I felt like I slept maybe three hours cumulatively throughout the night and surprisingly my results...
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    proof of antibiotic resistant lyme?

    I think it's interesting how opponents to Late Disseminated Lyme and Chronic Lyme argue that there is no sound evidence to support these diagnoses. On the other hand PTLDS is a theory and has no science backing it, yet that is enough to deny the existence of the above mentioned conditions.
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    Interesting visit with Dr Montoya

    Are you having any success treating lyme?? Thanks for sharing the article, definitely will spend some time reading it. I started treatment for lyme co-infections (I had 4) 4 months ago. After a month on cipro and clarithromycin my antibodies for bartonella dropped by 70% and I was no longer...
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    Interesting visit with Dr Montoya

    It's good to see that some patients here have had success with Montoya's treatment strategies. Personally I was misdiagnosed by his clinic. They believed my high ebv IgG titters (which remain high indefinitely if you have/had mono) were the root cause of my symptoms when I actually had lyme...
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    EBV Ab VCA, IgG >8 What to do?

    @mason I never had my titers checked following the Valcyte treatment. I only took it for a month because the side effects (mostly upset stomach) were terrible. Not sure what to make of the urinalysis you had completed. I would think your doctor would be able to distinguish any kind of...
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    EBV Ab VCA, IgG >8 What to do?

    If you ever had mono your IgG for EBV will remain high indefinitely. http://www.pathology.med.umich.edu/handbook/Tables/Archive/6EBVINFO.htm (I also remember seeing this in a research study) I had the viral panel done by the Stanford CFS clinic and had an EBV VCA IgG of 7.17. One of the...
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    Low NK CD57 in the abscence of Lyme

    @duncan I was not aware of the C6 peptide test. I did some research on it and am seeing mixed results. The consensus seems to be that it has a high sensitivity in acute stages of Lyme but the sensitivity is comparable to other testing methods during late and chronic stages of Lyme. I will...
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    Low NK CD57 in the abscence of Lyme

    Thanks for the replies. I have read the same thing about CD57 and its sensitivity to other infections and viruses. In my case I know I have no other active infections as determined from several virus panels. However my CD57 is currently at 7 so I'm hoping this is being driven by the...
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    Low NK CD57 in the abscence of Lyme

    Hi all, I was wondering if any patients on this forum have experience with a low NK CD57 lab result in the abscence of chronic lyme? I am currently infected with 4 co-infections but consistently test negative for lyme via your standard run of the mill PCR's and Igenex PCR and western...