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Eve Sapi's work - a post from my lyme group - antibiotics and borrelia

Discussion in 'Lyme Disease and Co-Infections' started by sianrecovery, Apr 29, 2013.

  1. sianrecovery

    sianrecovery Senior Member

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    I'm trying to take in the implications of it all myself - in a brain-fogged kind of way - and your post helped a lot. Will look at link tonight. I have definitely experienced transient but marked periods when the world goes dark , only to have it lift when I take an effective antibiotic or get out of a mold-compromised environment. One of my friends, who I have mentioned a number of times on PR, hung herself when in that state of mind, so I always bang on to people about understanding the depression can kill you quite effectively on its own unless you treat it, and respect its power. Hope yours lifts soon and permanently.
  2. baccarat

    baccarat Senior Member

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    Lotus,
    I didn't suggest immune stimulants, I talked of a functioning immune system. I am not sure you can heal from chronic infections, intracellular bacterial or viral infections without recovering immune function particulalry phagocytosis and nk cells.

    Regarding Lyme, my understanding is that the bug will suppress the immune system in a variable way depending on timing. Early in the infection it will try and suppress the body's TH1 response which at that stage is what can kill it.
    But once disseminated, it will shift focus and suppress the TH2 response presumably because at that stage is what can kill it, whilst causing a rise in Th1 predominance (autoimmunity) and that's why I think at that stage further stimulating Th1 may be counterproductive.
    sianrecovery likes this.
  3. sianrecovery

    sianrecovery Senior Member

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    If I had my youth and health back, I would be training in immunology. There are so many new avenues to be explored. We can send a probe to Mars, but the very real complexities of the human immune system, upon which we are all dependent to survive, continue to elude us.
    Creekee likes this.
  4. sianrecovery

    sianrecovery Senior Member

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    hey Baccarat, I've just gone on to tinadazole - could you expand on what you were referring to when you spoke of long term side effects?

    many thanks

    Sian
  5. Lotus97

    Lotus97 Senior Member

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    Sorry. I didn't mean to put words in your mouth. I made the mistake of taking immune stimulants so I wanted to caution other people not to do the same. And I agree about building up the immune system. I was able to make a recovery over the last year or two without directly treating Lyme or doing methylation. I think if I was doing methylation and treating Lyme during my recovery I would have had more lasting results. After suffering a relapse it seems that both methylation and treating Lyme are difficult for me.
  6. JT1024

    JT1024 Senior Member

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    Interesting thread!

    I'm pretty new to the Lyme and co-infection stuff and I'm afraid I'm going to have to get to a Lyme Literate MD (LLMD) here in the US pretty soon.

    I've had ME/FM for many years and just recently learned I had Lyme, Babesia duncani, and Anaplasmosis. I'm overwhelmed with all the issues surrounding Lyme here in the US. Most doctors are not current with treatments and most LLMD's don't take insurance.

    Even with insurance, patients prescribed antibiotics beyond the initial 4 weeks have to pay out of pocket for treatment because the insurance company denies the coverage. Even with pre-approval, patients have been told after and infusion that their insurance will not cover the cost. I'm hearing of many people spending many thousands of dollars to get treatment. I've downloaded a report published (February 28th 2013) by the state of Massachusetts that is quite enlightening.

    The link is here:http://www.malegislature.gov/Conten...meDiseaseCommissionFinalReport-2013-02-28.pdf

    I've also downloaded a huge report created by the Institute of Medicine in 2011. You have to register/sign in to retrieve it. http://www.iom.edu/Reports/2011/Cri...on-of-Lyme-and-Other-Tick-Borne-Diseases.aspx

    I'm quite afraid what I'm going to have to go through when I do get to the LLMD because I've been fortunate/unfortunate to have been able to keep working full time. I've been close to a complete crash the last six months and I'm terrified of losing my job and my home.

    It is time to do something since I don't see myself able to continue as I have been.

    If anyone can direct me to good Lyme websites, please let me know. I'm trying to learn as much as I can.

    ~ JT
  7. baccarat

    baccarat Senior Member

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    sianrecovery, flagyl and tinidazole, as other abx, may cause various side effects but the one side effect specific for those abx I was concerned most when I took it was nerve damage (neuropathy). It's usually linked to long-term use which I've always avoided.
    In my case the only side effect I ever experienced but from flagyl, was pain in the liver area. subsequent tests did not show anything but was quite a scare as liver damage or failure is another potential side effect.
    That's when I learnt to always take loads of milk thistle with it, plus b12 and a couple of other herbs which stimulate a chain of antioxidant enzymes to protect liver and the nerves.
    sianrecovery, merylg and Lotus97 like this.
  8. Lotus97

    Lotus97 Senior Member

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    I'm sorry to hear about your friend. If I didn't have my parents supporting me as well as antidepressants and sleep medication I would probably be in the same place. According to this study on the causes of death among people with CFS/ME, 20% died of suicide.
    http://www.name-us.org/ResearchPage...acts/JasonArticles/Jason2005Mortalityfull.pdf

    With Lyme (as well as other infectious diseases) microglia seem to be involved in regards to inflammation, depression, and glutamate. I just posted about it in this thread
    http://forums.phoenixrising.me/inde...tion-whats-happening.21757/page-2#post-351231

    That's interesting that you say antibiotics have helped because I would have thought the herxing would make things worse. Despite all the signs pointing to herxing causing depression, on a whim the other day I decided to start taking a low dose of what Buhner recommends. I'm not sure if it's enough to do anything positive or negative, but I figured I'd give it a shot. All the ones I'm taking have anti-inflammatory properties.
    sianrecovery likes this.
  9. sianrecovery

    sianrecovery Senior Member

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    Hi Peeps
    The Lyme forum/website I like the best is Arizona Lyme - it comes up if you google it.
    Baccarat - thanks for that - I also noticed when I was rooting around after reading your post that there are concerns about flagyl and carcinogenity long term - from animal studies I think. But what do we mean by 'long term' here?
    In terms of herx and depression, yes, definitely makes it worse - but there seems to come a time when the balance tips and I feel much better mentally on the right abx - usually about five days in.
    And I am now on the tinadazole. Same old story eh - girl meet antibiotic, antibiotic makes her feel better, then she realises it has a dark side and isn't going to work long term...:(
  10. sianrecovery

    sianrecovery Senior Member

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    Golden - am pasting in another post from the Lyme group re testing.

    ·





    http://drcharlescrist.net/Borreliosis/Testing-for-Borreliosis/




    Testing for Borreliosis


    When physicians do consider borreliosis, they often start with a screening test such as an EIA, ELISA, IFA or PCR-DNA probe. If the initial screening test is negative, many physicians tell patients they do not have borreliosis and the testing is stopped right there.

    Screening tests that are positive are often followed by a test called the Western blot. The blot is a "confirmatory" test, as opposed to a screening test. (Blots are performed for other infections -- it is a type of test, not a test uniquely for the borreliosis bacteria.)

    Western blots are accomplished by breaking the Borrelia burgdorferi into pieces, and those parts of the Lyme bacteria are then embedded in a gel. Electricity is used to push antibodies made by the immune system through the gel. Antibodies that are made to attach to certain parts of the bacteria will bind to those exact parts that are embedded in the gel. When the antibodies bind to the parts of the bacteria, a black band is formed, which is then interpreted as IND, +, ++ or +++ depending upon the intensity or darkness of the band.

    Each part of the Lyme bacteria weighs a certain amount. For example, the tail of the Lyme bacteria weighs 41 kilodaltons (kDa). Think of kilodaltons like pounds, ounces or kilograms. The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons. The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.

    It's important to know that screening tests like the EIA, ELISA, IFA and PCR can be negative even when the Western blot (confirmatory test) is positive. I presented research that supported this at the 1994 International Lyme Borreliosis Conference held in Bologna, Italy.

    For this reason I believe the screening tests are practically worthless, and why I use the Western blot to "screen" for borreliosis, even though it is a "confirmatory" test. Antibodies are very specific as to what they bind; consequently, in over 700 borreliosis patients false positive blot results occurred in only three percent of them, based upon research I presented at the 2000 International Lyme Borreliosis conference.

    Data from those same 700 patients showed that if their Western blots had even one antibody significantly associated with the bacteria, there was a 97 percent chance they would feel better with antibiotics. Consequently, I tell my patients not to worry if the laboratory interpretation is "negative" or "equivocal," if they have antibodies that are significantly associated with Borrelia burgdorferi.

    One thing doctors are taught in medical schools is to treat the patient, not the test result. If someone has chronic pain, fatigue, cognitive problems, blurry vision and/or neurological problems, and also has a significant antibody on a borreliosis Western blot, that antibody should not be ignored in my opinion, even if the `official' interpretation is negative or equivocal. Remember, antibodies are very specific to what they bind, and borreliosis may cause virtually any symptom and any disease.

    Disease surveillance is close observation of a group of patients with the same disease, and it is one of the jobs of the Centers for Disease Control (CDC). Criteria used for disease surveillance is often different than criteria used to diagnose and treat patients. In my opinion, surveillance criteria should not be used in day-to-day clinical medical practice. Unfortunately, many patients are told they do not have borreliosis because they do not meet CDC's surveillance criteria. Surveillance criteria exclude some of the classic hallmark antibodies, such as the 31 kDa band (outer surface protein A or ospA) and the 34 kDa band (outer surface protein B or ospB). In fact, the 31 kDa band is so tightly associated with borreliosis that a vaccine was made from that outer surface protein. In other words, I believe that criteria that exclude the ospA (31 kDa) band should not be used to tell a patient they do not have borreliosis. Common sense should tell anyone that prevalent antibodies like the 31 dKa and 34 dKa should be included in the criteria, not excluded. Remember, research supports that if just one antibody that is significantly associated with Borrelia burgdorferi is present on a Western blot, 97 percent of those patients with chronic symptoms or chronic diseases feel better with antibiotics.

    Same day head-to-head comparisons of borreliosis Western blot results revealed that reference laboratories do a better job of finding antibodies against Borrelia burgdorferi than regular laboratories. This raised the obvious concern that the reference labs might be overdiagnosing patients with borreliosis. That is one of the reasons why I researched those 700 patients. However, the false positive rate was just three percent. In my opinion, reference laboratories do not over-diagnose borreliosis.

    False negative test results, on the other hand, are a much bigger problem, in my experience. Negative Western blots convert to positive in 18 to 24 percent of cases, if four weeks of antibiotics are given, and then the patients go off antibiotics for 10 to 14 days before the repeat Western blots are done. In other words, a false negative Western blot converts to positive in about one out of five borreliosis patients. This is a much greater problem than a false positive rate of only three percent.

    Coinfection testing may depend upon where you live on planet earth. I talked to one medical doctor from New England that was concerned about getting too many positive test results for bartonellosis (cat scratch disease). This physician was concerned about false positives. Yet I have not had a single positive yet.

    Research by Greg McDonald, Ph.D. has shown that there is a different borrelia in the Midwestern U.S.A. When Dr. McDonald used a PCR primer that would amplify any strain of borrelia, he obtained positives from biopsies of bulls-eye rashes caused by tick bites in patients from Missouri and nearby states. However, if Dr. McDonald narrowed the PCR primers to amplify only Borrelia burgdorferi, Borrelia lonestari or Borrelia andersoni, the results were negative. In other words, the Midwest has a different borrelia. It has been referred to as Borrelia "confusiosis," but one of these years when it is finally characterized fully, this Midwestern borrelia will probably be known as Borrelia mastersi, in honor of Edwin Jordan Masters, M.D. and his extensive research.

    Pathologists who use a microscope to examine bulls-eye rash biopsy specimens from Midwestern patients observe significant and consistent differences when compared to biopsies from New England patients. The diseases and their rashes are similar, but there are definite differences. This is why borreliosis or Masters disease is a better name. It is similar to, but different than, New England Lyme disease.

    Another feature of Midwestern borreliosis is the inability to grow Borrelia burgdorferi from patients with Lyme borreliosis. In New England about five percent of cultures grow Borrelia burgdorferi from borreliosis patients. There are other borrelia* that cannot be grown in culture media. The bacteria that causes syphilis has never been grown in culture media, even though this infection has been known and studied for several generations. It should not be surprising that the Midwestern borrelia cannot be grown in culture media yet. When it is, knowledge of this infection will increase tremendously.

    James Oliver, PhD, who is a very highly respected entomologist, has successfully cultured Borrelia burgdorferi from over 60 ticks collected in Missouri. Why human cultures are negative and tick cultures are positive remains a mystery. Still, there appears there is a Midwestern borreliosis.

    The same is true for co-infections. The babesia in Missouri is called MO-1. It is a different babesia. There are different ehrlichia. It would appear there is a different bartonella. When you have different strains of germs, the test results may be falsely negative.

    To protect patients' pocketbooks, I rarely test for tick-borne coinfections. If the tests were reliable I would be more inclined to order more. In general, when potential coinfections are targeted with antibiotics, 97% of patients get better.

    At least three possibilities exist to explain patients feeling better with antibiotics. It could be that an antibiotic that targets a potential coinfection such as babesiosis may actually be killing the borrelia bacteria as well. Or it may be that a negative test for a coinfection was falsely negative. And finally, there may be some unknown germ that the patient has that responds to the antibiotic. I tell my patients that regardless of why the antibiotics help most borreliosis patients, the benefits of antibiotics outweigh the risks. My greatest concern is untreated borreliosis, not the potential side effects of antibiotics that target tick-borne infections.

    Specimens for borreliosis Western blot testing should always be express-mailed to the laboratory. Antibodies against the Lyme bacteria can clump or bind together and give a false negative test result. Express-mailing specimens lessens the time in which this could happen, which in turn increases test accuracy. If your specimen sits around for several days (or if a screening test is ordered instead of a Western blot, or if a regular lab is used instead of a reference lab) then you might be given a false negative test result, which in turn could result in a false sense of security. Testing in my office consists of a Western blot that is express-mailed to a borreliosis reference laboratory.
  11. Lotus97

    Lotus97 Senior Member

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    Someone told me there's a Lyme group in Arizona using the banderol/samento combo (no idea if it's effective or not). However, Stephen Buhner is skeptical of in vitro studies. This is his response to the Eve Sapi study on banderol and samento

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