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17 years of a ME/CFS dx, and it is Lyme, Bartonella and Babesia not ME/CFS

Discussion in 'Lyme Disease and Co-Infections' started by katieann, Jul 8, 2011.

  1. Wayne

    Wayne Senior Member

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    Too Little Attention to Bacterial Infections

    Hi kday,

    Thanks for your post. I can relate to your thoughts here today. What is known about Lyme disease bacteria is that they are highly immuno-suppressive. Does this then pave the way for opportunistic viruses such as XMRV? Or are certain viruses, such as XMRV, immuno-suppressive, which paves the way for various types of bacterial infections such as Lyme.

    I don't believe anybody knows. I share your view that bacterial infections, such as Lyme and other types of spirochetes, are getting way too little attention. So I very much appreciate Katie starting this thread and trying to get the word out. There is much to be learned and considered.

    Best, Wayne
  2. anniekim

    anniekim Senior Member

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    Dr Deckoff Jones in her treatingxmrv blogspot has written some posts on her view of lyme disease. Her daughter tested for it, got treatment and was fully well for three years, but then got ill again. I think Dr Deckoff JOnes tested positive for it, had years of treatment, but it didn't help. If I understood her views correctly, some people test positive, get treatment, get completely well. Others respond partially to treatment, continuing forever on abx does not help them progress further. Then others to maintain their partial improvement have to stay on the abx indefinitely, years, otherwise they get worse. Others can test positive, get abx treatment and don't respond.
  3. ukxmrv

    ukxmrv Senior Member

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    Wayne,

    You side-stepped what I was said and jumped on a sub-point of course.

    Would you rather that vital donated funds would be solicited from people from ME and CFS here (as this is a forum for these diseases) and then spent on Lyme testing some patients, rather than spent on research that could find the cause of ME and CFS?

    We need to be clear here. Katie is after money to do this and that is the reason why she is here. It's about funding her idea. It's all explained in the link she posted to my query.

    I would very respectfully ask that Katie make that clear and for this thread to be recognised for what it is.

    If people want to spend their money on that - I'm fine. I just choose not to (or to take money for that reason).
  4. katieann

    katieann

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    Agree with you and kday, very much so.
  5. katieann

    katieann

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    And we're still not sure how much XMRV is stroking the fire, or not.
  6. Tristen

    Tristen Senior Member

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    Thank you Katieann, great blog too btw.

    May I ask about your IgenX results on the Lyme IgG Western Blot? That would be the IGENEX - IGG - RESULT. Also which bands showed ++ or more?

    Also, if you did the Babesia Duncani Antibody Panel, what were the results?

    I showed borderline on both the Western Blot and the Babesia tests (IgeneX, not CDC), and have not responded to antibiotic tx favorably to suggest that Lyme or Babesiosis is the cause of my me/cfs.

    Your enthusiasm is contagious
  7. katieann

    katieann

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    o nonnononono..you misunderstand, or I said it badly. It's the LYME community that will help those ME/CFS'rs who either cannot get enough financial assistance for testing, or none from the already established national and state lyme organizations that try to help. This is where we can add value. Those of us who have tested positive for Lyme, and want to help those with ME/CFS get tested is how this will work. There are many of us ME/CFS'rs and Lyme sufferers that can help, and want to help, but we certainly do not want to ask anything of the ME/CFS community. Sorry for the confusion, I probably didn't make that clear.
  8. katieann

    katieann

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    Thanks Tristen,

    My results for the Lyme panel were:


    IgM: 34, 41, 83-93; +/-39
    IgG: 18, 30, 34, 41, 45

    And I did test positive for Bartonella.

    Babesia did not show up, and it's a toughie to test for. I was a tad surprised Bartonella actually showed up.

    It was in May when we tried the Mepron for Babesia, and the herx reaction was so strong we knew I was positive for it as well. It's been the addition of the Mepron for Babesia that has helped me the most.

    Also, I'll ask my llmd next week about the amounts of "+++"'s as I don't have a copy of the results at hand.

    Hope that helps?

    ~ k
  9. JPV

    JPV Senior Member

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    Has anybody tried Samento for Lyme Disease? If so, can you share your experience with it?
  10. katieann

    katieann

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    Dr. Burrascano is using it, but adding Banderol as well. I know of other protocols using it too now. I can't seem to locate the talk/article he has... I'll keep trying.

    well, here's Cowden's protocol with it. But Burrascano did the studies regarding the effectiveness of Samento and banderol... dangit, where'd it go!

    Oops, I was wrong, but the study is at this url, and the authors are:

    In Vitro Effectiveness of Samento and Banderol Herbal Extracts on the Different Morphological Forms of Borrelia Burgdorferi
    by Akshita Datar, Navroop Kaur, Seema Patel, David F. Luecke, and Eva Sapi, PhD

    http://www.townsendletter.com/July2010/sapi0710.html

    "There is an alternative clinical treatment option gaining wide use, called Cowden Condensed Support Program, that utilizes several herbal extracts designed to eliminate microbes in Lyme disease patients. Richard Horowitz, MD, president of the International Lyme and Associated Diseases Educational Foundation (ILADEF), has prescribed this protocol for over 2000 of his patient and reports that it has been effective for more than 70% of them. The two herbal agents from the Cowden Condensed Support Program selected for this study are Samento (a pentacyclic chemotype of Cat's Claw [Uncaria tomentosa] that does not contain tetracyclic oxindole alkaloids), with reported antibacterial and antiviral properties, and Banderol (Otoba sp.), known to have antibacterial, antiprotozoal and anti-inflammatory effects.10-12 Both herbal agents are used during the first two months of Cowden Condensed Support Program, then in rotation with other antimicrobials for the duration of this 6-month protocol."
  11. ukme

    ukme Senior Member

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    katieann, what did you take for the bartonella?
  12. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Lyme's in the UK too, folks, in fact it's believed to have originated in Northern Europe and moved West on our transported animals, iirc
    Increasinfly warm weather, and more people doing outdoor pursuits etc have also increased numbers of victims
    and then, maybe, possibly perhaps *cough*, the bug got "Improved", made more infectious, harder to detect, in a lab on the NE US coast, and then it got out. Or maybe not...oi vay...*sigh*

    I got tested for Lyme early on but the NHS, at least back then, used that same stupid cheap form of testing
    TYPICAL bloody bureacratic morons! false results on such an often wrong test costs more money than doing it right ONCE!

    :p
  13. liquid sky

    liquid sky Senior Member

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    I tested positive per Igenex for Lyme. Treated for over a year on strong doses of antibiotics. I only got worse. I noticed a lot of the Lyme literate physicians are interested in HGRV's. They are looking for a way to treat those who do not respond to antibiotics. There are a lot of people who don't get better on antibiotics.

    Hope you are one who benefits from treatment.
  14. Wayne

    Wayne Senior Member

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    Some Reasons for Lyme Treatment Failure

    Hi Liquid Sky, Hi All,

    After getting a positive LD diagnosis, some of my initial research indicated what you wrote above. Given how sensitive I am to medications, I was very hesitant to start any kind of antibiotic therapy until I learned more. This is some of what I learned:

    1) Virtually everybody who has Lyme has a unique situation. There are several "well-known" Lyme bacteria infections, plus many more "co-infections". Some Lyme researchers estimate there could be as many as 300 different co-infections, with many of them yet unknown and unidentified; each individual generally has "several" co-infections. Certain antibiotics just have no effect at all on certain co-infections, so if a doctor doesnt follow through with a unique combination and delivery of antibiotics, then they may have little to no effect. Plus theres the possibility of a person getting worse.

    2) The well-known Lyme bacteria can be in three different forms; a) spirochete; b) cellwall-deficient form; and c) cyst form. Antibiotics work best (perhaps exclusively) on the spirochete form; they are affective because of their ability to disrupt bacterial cell wall replication. Antiobiotics also work best when spirochetes are in the bloodstream, and not embedded in the muscles, bones, teeth, joints, neurological system, etc. Thats why its so important to treat new Lyme infections with antibiotics as soon as possible, to eradicate it before it has a chance to embed itself deeper into the body.

    If it does get embedded deeper into the body, it is then called chronic Lyme. Conventional doctors generally believe there is no such thing as chronic Lyme. Most doctors will treat for Lyme if a patient presents with a bullseye rash, and a positive test for Lyme. But if the person doesnt improve after 30 days, they often conclude they never had Lyme to begin with. This is because ISDA guidelines say all Lyme bacteria will be eradicated within 30 days using antibiotics, though there is apparently no scientific evidence to support this thesis. Thats why so many with chronic Lyme seek out an LLMD.

    3) Various things going on in the body can prevent antibiotics and other treatments from working well. I read of one instance where a young girl was not making progress on antibiotics, so they did a little more searching, and discovered she had a serious pituitary gland deficiency, or something like that. Once they corrected this, she started making steady progress. Unfortunately, Lyme, similarly to CFS, generally disrupts the HPA axis. I can see that in some instances at least, that an HPA axis dysfunction could prevent a person being treated for Lyme from making good progress, or any at all.

    4) Focal infections: Many people have unresolved focal infections in their bodies that can cause major disruptions in a persons health. These can result from failed root canals, and other types of oral surgery that was not properly done or that developed complications somewhere along the line. There are many people who have recovered from their ME/CFS just by treating these kinds of infections. So if a person had both Lyme and an oral infection, treating the Lyme alone will not resolve the accompanying focal infection issues. These focal infections are not only oral. They can also settle in the gallbladder, joints, major organs, etc.

    5) Detoxification Issues: When Lyme bacteria are killed, they release high levels of neurotoxins. If these neurotoxins are not efficiently eliminated from the body, it can be major obstacle to improved health. Detoxification issues are even more critical for those with a methylation cycle block, which it appears most of us with Lyme and/or CFS are dealing with.

    6) Chronic infections of all kinds can do a lot of damage to the body. If a person is to treat Lyme successfully, this damage needs to be identified and effectively addressed in order to achieve better health. If a person is left with a disrupted HPA axis, adrenal exhaustion, liver toxicity, etc., theyre still going to be dealing with major health issues, even if the Lyme bacteria has been eradicated.

    These are some of the factors Im considering as I embark on my own Lyme treatment journey. My descriptions may not be totally accurate, but I think theyre generally pretty close to what Lyme patients are dealing with. Im no expert on all this, and I know there are other factors that may be just as or more important than the ones Ive listed. I guess a main thing I keep in mind for myself is that this is all very complex, and Lyme patients will have unique situations that will result in a number of circumstances with treatment needing to be adjusted accordingly. Which again, is why most people with Lyme seek out an LLMD.

    But LLMDs vary considerably as well in the approach they take, and their competency. Many have not heard of, or do not use Rife machines. While Ive heard of many getting well on antibiotics alone, Im not convinced all were successful in completely eradicating some of the deep seated Lyme bacteria. It can lay dormant in cyst form for long periods of time, only to attempt to migrate and emerge back into bloodstream when immune system vulnerability allows it. Thats why people who choose to use Rife machines will do it regularly, long after they feel completely well. It can kill these dormant bacteria when they emerge from their sanctuaries.

    I hadnt expected this post to be so long. There are no easy answers to this complex disease, and many who study it have disagreements about many things, including treatment strategies. In the end, we all have to choose what we believe is likely to be true, and what we feel is right for us. In my case, I dont know what percentage Lyme Disease is contributing to my health issues. I guess it could be relatively little, but then again, it could be as much as 90-100%. Since Ive read of many people with Lyme making significant progress after beginning treatment, Ive decided to focus on that, to the somewhat exclusion of pursuing other avenues. It seems many people treating their Lyme end up experiencing significant improvement in their health; most people with CFS dont.

    Best Regards, Wayne
  15. svetoslav80

    svetoslav80 Senior Member

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    ELISA test often gives false positive result, so if you have 3 or more positive ELISA tests you may want to confirm them with Western blot. But when we talk about false negatives, Western blot is no better than ELISA - it gives as much false negatives as ELISA. So if you tested negative with ELISA, there's no sense to make Western blot. Correct me if I'm wrong.
  16. katieann

    katieann

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    generic spectra-DS

    I think I missed something. I had started Zithromax and Cefdinir before teh addition of the Spectra-ds (generic). I think one of the first antibiotics I used was also used at times for Bartonella?, but I can't think today so not sure. I'm doing a spiritual fast and since I can't fast with food, I am sacrificing pain medication today. So, yeah, the brain isn't intact so much... =p
  17. katieann

    katieann

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    My LLMD also has XMRV/HGRV, so an ally for me when I want to try a HAART therapy in the future.
  18. katieann

    katieann

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    The ELISA test is 50-59% wrong in false-negatives. Not positives iirc.

    and also, there are many reasons for a test to be false-negative... go here for details before doing the test.

    http://pushpinangels.blogspot.com/p/reasons-for-false-negative-tests.html
  19. svetoslav80

    svetoslav80 Senior Member

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    That's what I said. Both ELISA and Western blot may give false negative results.

    You're wrong about the false positives. One example for this can be seen here - http://www.lymenet.de/labtests/brenner.htm

    "For example, some patients with periodontal disease, which is sometimes associated with an oral spirochete, might test positive on a Lyme ELISA, because their sera will react to components of Bb (like the flagellar protein, which is shared by many spirochetes) even though they themselves have never been infected with Bb. Therefore, some positive Lyme disease ELISA results can be "false" positives."

    If you're infected with cytomegalovirus, you can also have a false positive result, I think.
  20. Graeme

    Graeme almost there...

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    Thanks kaiteann, you've incredible timing. I just received my labs back from Igenex and seem to be positive for Lyme and Babesia. Here are the results:

    Lyme IgG western blot
    Igenex result - positive
    CDC/NYS -negative
    **34 kDa +
    **41 kDa +
    58 kDa +

    Lyme IgM western blot
    Igenex result - positive
    CDC/NYS result - positive
    **31 kDa +++
    **39 kDa +
    **41 kDa ++
    **83-93 kDa +

    Babesia FISH (RNA) positive

    B. Ducani IFA (G/M)
    IgM 20
    IgG 40

    HGE PANEL (granulocytic)
    IgM <20
    IgG <40

    B. Henselae IFA (G/M)
    IgM < 20
    IgM 40

    HME PANEL (monocytic)
    IgM < 20
    IgG < 40


    I appreciate any comments as I haven't yet spoken with my naturopath, who ordered the tests. I guess I'm wondering if this is unequivocal. And am I right to have doubts about Igenex?

    You wrote: "Igenex is the best rated FDA Lyme lab in the US..."

    Are you sure this is true? I haven't been able to find any confirmation of this. Rather I've seen they've been investigated and suspected of returning false positives. Perhaps it's overly cynical of me, but there's a lot of money in it.

    Whatever the case, I'll be treating for Lyme, one way or another. I'd just like to feel a bit more comfortable with the diagnosis.

    Thanks,
    Graeme

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