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Lyme Disease as a model and or subset of CFS - Must reading on Lyme or CFS/ME

Discussion in 'Lyme Disease and Co-Infections' started by LHCTom, Mar 17, 2012.

  1. LHCTom

    LHCTom

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    Lyme Disease Presenting as Chronic fatigue

    http://www.cfids-cab.org/rc/Shor.pdf


    Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome

    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

    Chronic Lyme Disease in British Columbia - The best summary I've ever seen! - A must read for CFS patients

    http://murakamicentreforlymebc.giving.officelive.com/Documents/Schmidt%20Report%20on%20Lyme%20Disease%20in%20BC%20-%20May%202010.pdf
     
  2. determined

    determined Senior Member

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    LHCTom, how long do you think you have had lyme disease? Do you feel that you have CFS IN ADDITION to lyme? Have you had the test done on you cerebrospinal fluid (ouch, I had a lumbar puncture done in the 80s and I don't think I could do it again).

    When you look into new treatments, what are you trying to address as the priority?
     
  3. Esther12

    Esther12 Senior Member

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    The problems that can be caused by Lyme disease seem to have been really confused by the spread of dodgy tests.

    The Cerebrospinal study that was posted above made a bit of a splash, especially in the American media, when it was published. I'm not sure if there's been much follow up or comment upon it since.

    I don't understand the science well enough to comment on it.

    Ken Witwer left this comment on the PLOS site: "30,000 peptides were identified in the two disease samples. Only ~19,000 peptides were identified in the pooled normal sample (see Table S1)."
     
  4. LHCTom

    LHCTom

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    My thinking


    I meet the criteria for CFS/ME but also have strong evidence that I may have Lyme which may either be it's cause or I may be unlucky enough to have both.

    First my priority is getting a definitive diagnosis of Lyme since that effects how I try and drive my overall treatment. Why do I and my doctors believe I have Lyme

    I have lived on acreage in Northern CA for 23 years where Lyme is prevalent and I have pulled a hundred black legged ticks off either my body, my friends bodies, my bed, my dog and my cat. I have been bitten a number of times and had to have an attached tick removed. So I meet the epidemiology test and exposure test. I do not recall the rash however.

    My symptoms, like CFS closely match Lyme symptoms.

    My Western Blot came up positive on the highly specific 34 and 39KDa and Flagella 41KDa but failed the CDC criteria which is controversial and driven by one ego driven Gary Wormser

    I had a new blood culture done by Advanced Laboratory Services and they cultured the Lyme Bb Spirochete from my blood positive!!

    I was given 2 antibiotic treatments about 6 months apart and had severe Jarisch-Herheimer reactions meaning something died off causing a massive immune response in body. Since the 2 antibiotics were different, it couldn't have been a reaction to the drug and both lasted about 3-5 days.

    Lyme and CFS/ME are suspected to be pathogenic initiated immune dysfunction which in turn activates opportunistic pathogens like HHV-6, EBV viruses and Mycoplasma and other bacterial infections. The immune dysfunction both helps the initiating pathogen ( Bb in the case of Lyme and a mystery for CFS) survive by down-regulating the innate immune system and killer cell activity and other adaptive immune function including B-Cells and a whole host of other immune mechanisms. This helps the initiating pathogen and opportunistic pathogens survive and tough to treat.

    People often relapse after antibiotic or antiviral treatment because the bacteria and viruses hide intracellular, n biofilms, in the immune cells, in the nervous system etc.. If you don't kill them all, they will return.

    In addition, Lyme in hides inside Lymphocytes and other immune cells along with HHV-6 and EBV evading contact with antibiotics and antivirals.

    Lyme and the viruses also hid in the nervous system also evading antibiotics and antivirals.

    Lyme and the viruses use bio-film colonies of mixed pathogens plus genetic exchanges to surround themselves with protective barriers from both the immune system and antibiotics and antivirals. Its tough to break up the protective biofilm colonies and some pathogens stop growing in the biofilm so antibacterials and antibiotics fail.

    Both Lyme and the viruses trick the immune system in autoimmune attacks of normal tissue through a variety of mechanisms. This causes most of the symptoms and harm. B Cell alterations may be involved in this autoimmune problems by creating inappropriate antibodies that attack host cells.

    They are frighteningly alike in how they work with the main difference being the initiating pathogen.

    So what does this mean for treatment to me?

    Any treatment that doesn't eliminate the infections either by antibiotic or antiviral mechanisms will not work

    Any treatment that doesn't correct MOST of the immune dysfunction will not work.

    Any treatment that does not address biofilms will not work.

    So what might work?

    Testing for ALL pathogens so you know what you are fighting is essential. You must know your enemy. This cannot be over-stressed.

    Testing all immune functions possible is essential. To the extent science understands the immune system, the problems MUST be understood.

    A biofilm treatment strategy must be found for the pathogens found in your body. There are a number of researchers working on this. Its currently a major problem. Their are are persistence tricks like Lyme changing from its spirochete form to and L-form to a Cyst form that must be tackled. This may also be true of other pathogens.

    Once you know what is wrong with your immune system, their are both scientifically rationale approaches like Rituximab, Zadaxin and other immune modulators plus proper nutrition and supplements that can help straighten out the immune system. Their are more radical approaches. I'm looking at all as I have a IgG subclass deficiency in IgG1 and IgG 3, a low CD3 and CD8, low NK activity and low CD57... My immune system is in the tank. I need more testing

    I have HHV-6 so high dose Famvir will be my probably approach

    The combination of Ceftin and Flagyl addresses both forms of the Lyme bacteria.

    I'm stuck so far on biofilm strategies but its my to priority along with other immune system restoring strategies.

    Bottom line - You need to fix your immune system and wipe out a very tricky enemy in these pathogens.

    WORK IN PROGRESS
     
    Enid likes this.
  5. LHCTom

    hm, has anyone done research into the differences between Lyme and "regular borroleosis pre-1940s", to see if such adaptation is way too advanced and thus, the result of what could only we Human's malign interference to create more potent disease forms?
    ie, bioweapon.
    Because that degree of sophistication seems excessive?


    I used to routinely go walks in local woods, beautiful place, ex-lord had it all crafted/planted with exotic plants/trees :)
    But had deer etc and thus plenty of ticks, so it (Lyme) is a possibility for myself
     
  6. Jarod

    Jarod Senior Member

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    planet earth
    Hi LHCTom,

    Have you heard about that new PCR test for lyme? Supposed to be a reliable method for detection?

    http://forums.phoenixrising.me/showthread.php?14236-New-Lyme-disease-culture-test-now-available!

    By the way, I think I have lyme also.
     
  7. determined

    determined Senior Member

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    Thanks for the info, LHCTom! It certainly does sound like you have lyme.
     
  8. LHCTom

    LHCTom

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    There is no 100% definitive Lyme test

    I'm using every resource at my disposal to try and get as close to 100% definitive on whether I have Lyme or CFS or both in that late stage chronic ( aka Post Treatment Lyme Syndrome) Lyme seems to manifest itself in similar symptoms.

    The Western Blot and EIA tests both rely on a healthy immune and its IgG response and I have IgG subclass deficiencies and very late stage muddying the water. Results = suspicious

    The PCR test relies on actually finding usable DNA in the blood sample taken and the test has low sensitivity. The Lyme Bb bacteria often hides outside the blood system especially in its later stages. I did take a Labcorp PCR Lyme test and got a negative but unfortunately I had been on antibiotics so that would have cleared the Bb from the blood in particular.

    I did fortunately take the Advanced Laboratory Services blood culture while in a very ill phase and I hadn't taken any antibiotics for >6 months and got a positive = very suspicious

    I did a 2 week course of Flagyl in a very ill phase and then a year later Ceftin in another very ill phase had a very severe what seemed like a Jarish-Herxhiemer reaction while both lasted the first 2-5 days of the course and completely abated. On the Flagyl I repeated a few weeks later as the symptoms began to slowly return and did not have a noticeable reaction. I continued the Ceftin after the reaction and doubled the dose with no further reaction. This implies two different antibiotics that are effective against the Lyme Bb ( and many others like my mycoplasma or toxoplasmosis) resulted in a fairly brief die off reaction. Something died but it is not 100% the Lyme Bb but also very suspicious.

    I'm will be going to Columbia's "Tick-Borne Research Center" in June for their Lyme second opinion which includes a neurological evaluation which should be very helpful.

    I'm scheduled for a Spect Scan to look for the signs of Lyme or CFS in 2 weeks.

    Why am I trying so hard to be as close to 100%? I need to know if I should be treated for Lyme or CFS. Both are very complex to treat and not knowing the exact pathogens involved is an obstacle to knowing how to proceed. In both cases the pathogens are attacked with antibiotics/antivirals and the immune system must be restored but the difference is significant even if the symptoms are almost identical for may patients.
     
  9. LHCTom

    LHCTom

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    Evolution created us and we have only been around a few million years. The dinosaurs made it a few hundred million. Microbes are working on billions of years. I'd be betting on the billions of years of evolution = very deep time over some crazy bio-weapon scientist but who knows.
     
  10. LHCTom

    LHCTom

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    A scary summary of the history of Lyme vaccine, patents and chronic Lyme and CFS

    Here is the complete argument about how the Lyme Vaccine actually unleashed a condition difficult to distinguish from Chronic Lyme, CFS, Gulf War syndrome etc... and due to patent protection and later fear of liability certain key IDSA scientists have obstructed the science. Its interesting but who knows....

    http://www.authorstream.com/Presentation/aSGuest101031-1055644-the-greatest-imitator/
     
  11. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    Thanks for sharing your findings and questions, LHCTom.

    I, too, am asking whether I have CFS or chronic Lyme disease or both. I meet all the criteria for the ICC ME. I had a positive Western Blot but not by CDC standards. I had a positive response on the Advanced Laboratory Services Borrelia culture test.

    I've been on antivirals for a couple of years and just started on IV antibiotics among other treatments.

    I really appreciate your sharing.
     
  12. Jarod

    Jarod Senior Member

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    planet earth
    It's great you are so involved in your treatment and can function well enough to participate. Probably the best way to get better is to help your doc help you.

    All the Best!

    Keep the good info coming!

    Jarod
     
  13. merylg

    merylg Senior Member

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  14. LHCTOm
    yeah I know evolution cna create incredible complexity :)
    but the quesiton is...why the huge global spread of this infection in last few decades?

    and also, form the incredible complexity...the unbelievable arrogance and stupiity of the medicial profession in dimissing any new, odd disease as "hysteria" show's their bigotry, complete lack of understanding of their own sphere of science, and vile attitudes vs their patients

    Life on this planet is over 3 billion years old
    There is NO room for complacency in science
    We know this much .
    One tiny dot in a vast ocean of complexity
    200+ years of investigation is nothing, every day more is found
     
  15. Athene

    Athene ihateticks.me

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    Hi LHCTom,

    I got diagnosed with CFS abot 28 years ago, and diagnosed with Lyme and a heap of tick-borne co-infections about 18 months ago.

    Although knowing you hve Lyme motivates you to take a truckload of antibiotics, you'll find, the more you read, that absolutely ALL the supporting therapies for lyme patiemnts are the same as the panoply of treatments that help CFS patients. So I think that anything you choose from the general CFS therapies will help you whether or not you have Lyme. The onyl exception to this is taking cortisol supplements, you must not do that under any circumstances as it will render Lyme disease incurable.

    If you find out anything useful about biofilm protocols, please could you share it here? My Lyme doc is cautious and doesn't like to prescribe anything that is not tried and tested, and he only prescribes me N acetyl cysteine, as that has been absolutely proven to break down biofilms. I am keen on researching and perhaps trying out enzymes.

    One other thing, many people with Lyme get a negative Lyme western blot, which then is positive after they have taken antibiotics for a couple of months. This is because the borrelia suppresses the immune system, or is so active that all the antibodies are complexed (and therefore do not show up on the test), and after a bit of treatment your immune system gets a little on top of the situation and you can find antibodies in the blood.
     
  16. LHCTom

    LHCTom

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    Sounds like we are in similar boats

    Sounds like a lot of parallels. I was on anti-virals also since they had found high HHV-6 titers. I've yet to go to IV-ABs but am on high doses of Ceftin again. The scary part is even IV ABs can't get to all the places the Bb hides, can't break up the biofilms, can't kill all inactive forms, the cyst form requires Flagyl or similar AB and the spirochetes convert to cysts when under AB assault. Have you seen the film Under Our Skin? Its fabulous but scary.... If not, you must see it. Its on Youtube and other places.

    http://www.underourskin.com/
     
  17. Athene

    Athene ihateticks.me

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    Are you taking artemisia to break up the cystic forms of borrelia? Or plaquenil, which drives the antibiotics inside them? Using flagyl is out of date now, at the latest ILADS conferences they have advised against it.

    Instead of antivirals for HHV6 you shuld try 1,000mg a day of the amino acid Lysine. It works better, and that may save your liver from breakdown.
     
  18. LHCTom

    LHCTom

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    ILADS conference

    I just received a DVD copy of the ILADS 2011 conference proceedings yesterday but have not watched the DVD yet. Is this where you got their newest ideas on dealing with the difficulties getting at all the forms and places the Bb hides out? If not, where do you get the latest thinking?

    I also have a number of immune issues. IgG subclass deficiency in IgG1 and IgG3, low CD3 and CD8 and low NK cell activity. What is their latest thinking on how to help bolster the immune function since that's the other half of the problem? My doctor suggested trying Zadaxin which is used worldwide as an adjunct to cancer treatment and other viral infections due its ability to stimulate immune function? Dr Kaiser in Mill Valley is doing a CFS trial of KPAX's immune supplement that was trialed in Canada. Any thoughts on that?
     
  19. LHCTom

    LHCTom

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    If you just look at the Earth's population as a function of year, you get the answer to the question of why now. The Earth's population will have tripled during my lifetime by the time I go. As the population grows, man has pressed into every nook on Earth leaving almost no stone unturned. Lyme Disease was found in the Iceman that was over 10,000 years old. There is a similar story for most microbes but the carrier of the Lyme spirochete is mice. The ticks feed on the mice and in turn bite mammals and people. In the same way the Black Plague was spread by rats across Asia into Europe by travelers and commerce, we are making things very easy for the mice and ticks which in turn are spreading and thriving. We have disturbed the natural balance helping the mice and ticks vectors both thrive and spread and in turn people are living and playing near them. That in turn allows the Lyme spirochete to thrive which drives its evolution and pulls together all the immune hiding tricks picked up by its ancestors over a billion years and test and improve upon them. We are at fault but its not our weapons scientists ( yet), its our overwhelming the planets resources and systems and changing the natural balance in favor ( and against some) species with microbes the final winner. That's why they have survived a billion years and we will be lucky to make another century.
     
  20. LHCTom

    LHCTom

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    Agreed. Adding Lyme in particular to the typical mix of pathogens found in CFS patients does add a unique problem since the Lyme Bb is particularly difficult to kill as you know. In a nutshell - You need to kill the pathogens a normal immune system cannot keep under control somehow, get the immune system returned to a normal level and hope the autoimmune shift doesn't continue into cancer, MS, etc.. and hasn't done irreparable damage to critical body functions or the central nervous system.

    I am doing a lot of reading in the research literature about biofilms and the other mechanisms used by pathogens to protect itself. It truly complicates things for many reasons. Its obvious that antibiotics alone cannot get to all the bugs but does provide a way of keeping the systemic bug from growing unchecked. That's why people including myself have symptom improvements when going on antibiotics. They kill all the unhidden bugs which slows the spread. That being said, if you cannot get every last one hidden in a biofilm or elsewhere, it will just keep coming back.

    Some pathogens like the HSV1/2 herpes viruses have found places to hide in the nervous system where neither the immune system nor antivirals can kill every last one. That is why those infections are lifelong. I'm just praying Lyme or some of the other CFS pathogens like EBV, HHV-6 Mycoplasmas etc.. don't turn out to have similar unbeatable evolutionary strategies. That would mean Lyme and CFS fall into a category that require lifelong medications like HIV to just keep things in check.

    Many researchers are very suspicious that many of the autoimmune diseases like MS, ALS etc.. and even some cancers are the end stage of an infection that messed up the immune system which in turn did very bad things in very important places in our bodies. Just pray that isn't true or common.
     

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