More Lyme Disease

This weekend is ILADS’ annual meeting. Many people have written to me about their failed Lyme treatments. Please see earlier posts here and here for my thoughts on chronic Lyme Disease and the disastrous treatments still being pushed by ILADS. If you take a look at their agenda for this meeting, it’s pretty clear that they’re still advocating the same old, same old. There is one talk on XMRV, one on HIV and one on CFS, so there’s a little progress, but the rest of the agenda indicates that they are unable to incorporate anything new into their thinking at all.  They don’t know anything about viruses and it would seem they are unwilling to learn. Deplorable. Months before I wrote my open letter to ILADS, I was very vocal with the powers that be in that organization and was told that their guidelines were being revised. But I’ve seen or heard nothing that indicates that it is happening. Why change it? It’s working out pretty well for them. Completely irresponsible!

Here’s a case for you. Adolescent female who didn’t recover when treated for Lyme the way her siblings did. Has been treated for Lyme several times with no results for over a year. Lives in Europe and can’t get any treatment there at all. They had to travel to the US to see an LLMD to get a prescription for an antibiotic and a SPECT scan. The antibiotic didn’t work and the scan is not relevant to anything. Wouldn’t change anything no matter what it shows. The mother of this girl requested an XMRV test and was refused. So he orders tests at Igenex, but won’t order a test from VIP Dx, even for a patient who has traveled from Europe and can’t get tested there. I think there’s steam coming out of my ears while I write this. I know these guys. I knew them when I was in practice and some of them were my doctors. I can list all the reasons why they are behaving like ostriches for as long as they can get away with, but the reality is, I don’t understand. They aren’t dumb, though you couldn’t tell from their behavior. So I can only conclude that they are self-serving. Poor patients.

The current ILADS guidelines should be an embarrassment to every member. In my opinion, this document is contributing to tremendous ongoing unnecessary patient suffering. Exempli gratia, chosen at random: 27. Sequential treatment
“Clinicians increasingly use the sequence of an intravenous antibiotic followed by an oral or intramuscular antibiotic [19,37,101,47,48]. In two recent case series that employed combination therapy and sequential therapy, most patients were successfully treated [19,47]. A logical and attractive sequence would be to use intravenous therapy first (e.g., intravenous ceftriaxone), at least until disease progression is arrested and then follow with oral therapy for persistent and recurrent Lyme disease.”
Let’s take a look at the references. 19, 37 and 47 are from the J Spiro Tick Dis, so not retrievable on PubMed. 101 is a lecture by Joe Burrascano MD, an ILADS member. 48 is a paper that says that clinicians don’t follow the IDSA guidelines. Nothing about efficacy. And no references after 2003 in the entire document. For that alone I would think someone would want to update. Just for credibility. Though I don’t know why you’d want credibility without a clue of what to do.

When you put out a document like that, it is also necessary to look at the effect the document has on the real world. Obviously something the IDSA has never done. But two wrongs don’t make a right. ILADS is supposed to be the good guys.

One thing is increasingly clear to me, chronic Lyme burns itself out to be indistinguishable from CFS. LLMD’s are generally not knowledgeable with respect to CFS. None of my Lyme doctors suggested that I had CFS. Nothing about the end-point of what is being called chronic Lyme fits with an active bacterial or protozoan infection. All the antibiotics in the world, even paid for ones, won’t fix it. 

The cytokine storm that occurs when chronic Lyme patients are given antibiotics, called a “herx” by LLMD’s, is not a good thing in my opinion, if it persists beyond a short time. The idea that it means that you are killing Borrelia burgdorferii is, I believe, a complete myth.

Lyme Disease responds to treatment. If it’s going to respond, almost any broad spectrum antibiotic you throw at it will work. Tetracyclines, macrolides, penicillins, cephalosporins work. Patients who do not respond to antibiotics in an obvious way clinically will not respond no matter how long they are blasted. The patients who do not respond likely have a retrovirus or more than one retrovirus. They need specific treatment for the underlying cause of their disease.  I am hopeful that all this deviant treatment, on both sides of the fence, will eventually become an anachronism. But for now, a word to the wise. Don’t do what I did.

Patients who do respond to antibiotics, relapse and respond again may need to be maintained on long-term antibiotics. I want to say this very clearly, because I am being cast as anti-antibiotic and I am not. I am against persisting when it is a losing battle. I fully acknowledge how difficult these decisions are at this time. They need to be made individually within the context of the physician patient relationship, but they must be informed by what is known. And what is known is changing very quickly.

We don’t know what part tick-borne disease plays in the total picture. Any good doctor knows what he doesn’t know and acknowledges it. There is obviously a place for antibiotics in this patient population, but the fact that some respond doesn’t justify the huge iatrogenic injuries that are occurring. I’ve heard of quite a few gall bladders lost to Rocephin and a couple of people who still have their gall bladders, but have chronic right upper quadrant pain. And untold losses to the Bartonella witch hunt. People permanently harmed by quinolones and aminoglycosides.

Most of the patients who write to me are clearly hyperimmune or autoimmune. They do not get opportunistic infections in the way that AIDS, transplant or other immunosuppressed patients do. Borrelia burgdorferi and certain activated viruses probably play a part in pathogenesis, but are not opportunistic in the same way that happens with HIV. They do not overwhelm and kill the host.

Of course, if current HIV drugs control the disease, LLMD’s and CFS doctors will quickly become irrelevant. So why would they want to try them? Even if the patients are X+ and are begging for prescriptions. They’d lose their captive audiences. People traveling from all over to pay outrageous amounts of out-of pocket cash, which the doctors can justify to themselves, since they can’t get paid adequately for what they do under the current system, as the patients aren’t covered for what they have. Eventually ID doctors will treat it.

My husband was diagnosed with cardiac Lyme and treated with antibiotics twice for persistent arrhythmias, dysautonomia and the usual TBD suspects. Oral antibiotics made him worse. IV antibiotics gave him C. diff. He is now much better, having refused treatment for almost three years, other than a 5 day course of Alinia a couple of years ago that helped. Ali, who I once considered antibiotic dependent, has had no antibiotics since last fall. Her case actually supports ILADS’ conclusions more than most, and even she is proving them wrong.

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18 thoughts on “More Lyme Disease

  1. >Wow, so much of what I have thought. I was treated very aggressive for all TBDx4 years. While I did improve neurologically, it never touched my severe fatigue, malasie, low grade fevers, etc. I just felt sort of "blamed" because I wasn't feeling better. I do feel they tried their best for what they know and believe. Finally had enough and just had to stop. Almost lost the gallbladder, but now just have chronic, intermittant pain there. Large part of me have always felt this is screaming viral. Waiting for my VPI results. At least have someone to test me for it. Will be interesting to see if this is zoonotic or even potential vector. Ticks do have a long life cycle?? It's all interesting. Thanks for keeping us updated and your sincere thoughts.

  2. >"Of course, if current HIV drugs control the disease, LLMD's and CFS doctors will quickly become irrelevant. So why would they want to try them? Even if the patients are X+ and are begging for prescriptions. They'd lose their captive audiences. People traveling from all over to pay outrageous amounts of out-of pocket cash, which the doctors can justify to themselves, since they can't get paid adequately for what they do under the current system, as the patients aren't covered for what they have. Eventually ID doctors will treat it."

    Dear Jamie,
    You just write what I've been thinking for the last two months. In my dutch blog I'm heading in that direction, but I feel some resentment from patiƫnts who are treated now by these physicians. Therefor I'm thankfull that you share your opinion too. Thanx.

  3. >Of all the doctors ignoring the MLV research, how many do you think are doing so for the easy income, and how many are doing it because they have a hammer and therefore genuinely assume everything is a nail?

  4. >Dr. Deckoff-Jones, thank you for your candor. I am a mother of a child with Autism and I also suffer from CFS. The medical community that treats autism (DAN! Defeat Autism Now!) I believe is guilty of the same self-serving behaviors. For years they have been doing expensive treatments that can hurt children and completely ignore that XMRV is most likely the real issue. They have heard of X, but are unwilling to research it.

  5. >I was thrilled to hear that Dr. Conant's and Dr. Brewer's presentations were very well received. But I am terribly disappointed that information which first appeared on the horizon a year ago has changed nothing with respect to their written recommendations encouraging the indiscriminate use of antibiotics in chronic Lyme Disease. I believe that the ILADS guidelines have been and continue to be harmful to patients. They need to change to incorporate new information. Now, not when the scientists have given us the answers. Patients should demand it. There's enough information available now to protect patients from the mistakes of the past.

    Jamie Deckoff-Jones

  6. >Just started researching Dr. Goldberg's work with Neuro Immune Dysfunction Syndrome. This covers Autism (his main treatment), CFS, Chronic Lyme, etc. An hour presentation is available in six parts on YouTube. I was very impressed.

    I'm one of those who collapse without antibiotics but am not moving forward. I'm trying to figure out what to do to improve my immune system and fix my brain and the NIDS protocol might be it.

    Worth researching and I've love to see a blog post from you on it?

  7. >I think the interplay of tick-borne (or animal transmitted — cat or dog) coinfections and XMRV will turn out to be significant, particularly bartonella which has a long history with HIV and has been linked to AIDS dementia. AIDS dementia complex is primarily caused by HIV itself, unlike many AIDS-related problems, but bartonella works in tandem with HIV in the brain and I believe it could do the same with XMRV. Bartonella is much harder to treat than basic Lyme. Ever since I acquired bartonella that became cardiac and neurological (within days), stopping Rifampin even for a few days (after three years) causes a quick relapse and I nearly died from my cardiac bartonella, and was significantly disabled by it. I don't think it will be cleared by ART treatment alone any more than bartonella endocarditis in AIDS will be cleared by ARTs alone, and I'm not sure long-term Rifampin or Cipro (or other) treatment for some bartonella strains would be stopped by ART treatment alone, at least not without significant bartonella-specific treatment as well (one Medical Hypothesis paper talks about how it alone behaves immunologically like HIV/AIDS). I got my bartonella from a dog, and one of the two most common dog strains, bartonella vinsonii berkhoffi, was found in one dog study to kill every dog in the study (they were all, I believe, receiving treatment — 12 of them) except for one on constant Cipro for years. That dog could not stop Cipro. Would retrovirus involvement be possible? Or does the study suggest that bartonella itself was acting HIV-like? (or that the treatments just don't work much at all?).

    I also don't agree at all that chronic Lyme looks indistinguishable from ME/CFS. When I got bartonella on top of ME/CFS, each of my individual symptoms (pre-existing ME/CFS cardiac problems, cognitive problems, etc.) morphed into a different version of the same word, but felt radically different. Three years later, I got Lyme and probable babesia duncani (which was clinically diagnosed as babesia from a borderline test, whereas my Lyme and bart tests were positive) from a tick bite, and again, every symptom I had changed radically, and those new symptoms were cleared by antibiotics while my ME/CFS symptoms stayed exactly the same. But ME/CFS fatigue or cognitive problems or pain were radically different from the ones I got individually with Lyme, bartonella, and babesia, and I think it was the staggered way I got these illnesses that made the differences so obvious (and the staggered way I treated them, removing symptoms specific to each one and leaving the ME/CFS symptoms behind). Perusing Lyme boards, I did not relate to most of the chronic Lymies at all — most of them, for example, don't display severe post-exertional malaise which is the hallmark symptom of ME/CFS. However, it was useful to see more elaborate descriptions of a word like "fatigue." The intense mental vacuity and bizarre sleepiness I felt with babesia did not in any way resemble the neurological freeze-out I have had for 18 years with ME/CFS, even if on a doctor's check list both would come across as "fatigue." Yes, the list looks the same, but only as a list, and I think this is the problem with lists. I do think it's criminal not to test any Lyme patient with post-exertional malaise for XMRV). Lyme patients are getting tested for tularemia and Q fever and mycoplasma, so I'm not sure why LLMDs would so strongly resist XMRV testing — I agree it's troubling.


  8. >I think it is irresponsible to be blaming ILADS docs for not knowing how to treat a virus that no one else knows how to treat and it is certainly not known for sure yet who has this and who does not. Really, how dare you.

    Treat yourself, but don't blast other docters for not treating others based on guesses like yours. Or start treating those people yourself and take the responsibility for the outcome.

  9. >No one has proven that XMRV even causes illness let alone CFS etc. I have been following the XMRV stuff very closely since I am ill and would like to see how this plays out and if it is causing my illness. But the fact is that we don't know that for sure yet. No one has been able to prove that XMRV causes anything. The scientific community is still arguing over contamination issues.

    So I don't think it is fair to blame LLMD's for not testing or treating for XMRV. There just isn't enough known about it yet. It was just discovered in CFS patients a year ago. I think the LLMD's are just waiting (like the rest of us) to see how this whole thing plays out. They are waiting to see if XMRV has any relevance.

    It isn't fair to say that all LLMD's don't test for or treat viruses etc. I have an excellent LLMD who tests for EVERYTHING…including viruses. My LLLMD also prescribes antivirals. My LLMD is fully aware of CFS and even diagnosed me with Lyme Disease, it's co-infections AND CFS.

    So please don't lump all LLMD's together and please don't just assume that they are self serving and not exploring every avenue because many of them are. They put their jobs on the line every day when they teat us patients. I don't think anyone that was self serving would risk their career that way.

    The jury is still out for me. I was first diagnosed with CFS and then with Lyme and co-infections etc. So I am not positive what the underlying issue is for me. It could turn out to be XMRV. BUT until we know for sure my doc is doing their best to cover ALL bases and I am EXTREMELY grateful.

  10. >Thanks for this post.

    When I first became ill with fibromyalgia-like pain, sleeplessness, fever, and hugely swollen glads, I saw a doctor who thought I had Bartonella. I had received a puncture wound in my thigh from a cat, but my M.D. did not want to do the PCR, and treated me with a 60-day course of antibiotics. (My opinion was that I did not have Bartonella, but was reacting to a flu vaccine. I did get "well" after two months, but another episode of illness led another M.D. to suspect Lyme Disease — again, no testing, followed by another 60 day course of oral Doxycycline. I was also tested for HIV and was negative.

    Finally, I had a reaction to receiving an MMR — 4 years of migratory arthritis with pain, redness heat, and joint swelling, now accompanied by PEM, which continues to this day. PEM, migraines, light and sound sensitivity, short-term memory loss, inability to multi-task, inability to process what people are saying to me, dizziness from extremely low blood pressure, inability to stand or sit comfortably for long periods, and neuropathy are more troublesome to me now.

    In the aftermath of what I assume was a reaction to Rubella part of the vaccine, I no longer experience arthritis flaring in my joints, and have been diagnosed with ME/CFS. While I still had reactive arthritis, I took 200 mg. of Minocycline daily for several years. I don't think it did anything for me.

  11. >Typical male doctors — ego first, patient second.

    One of my doctors reacted as if it were a personal insult when the wrong prescription, for a condition I don't even have, didn't help me. But he absolutely, positively could not, would not, order the tests I requested because that would mean admitting that the patient knew more than he did.

    A cortisol test that would be off one way for depression and in the opposite direction for CFS would have proven once and for all which of us was right. It was never ordered because he didn't want to see proof that he was wrong.

  12. >We are new to the Lyme frontier. My daughter who is almost 17 is beginning her 2nd 'lost year'. She is in bed 22 hours per day. After months of testing at a well known children's hospital ID clinic the only diagnosis they could come up with was post viral fatigue.

    When I found a CFIDS specialist she was tested for and was positive for Lyme, babs, bart and erlichea. She has been on combo oral abx since March and is much the same. Our LLND wants to have her tested for X, but I am flat broke and can't afford it. Am saving the pennies and hope to test in the near future. Then what? So what if she's positive for X? What do we do? She will be a lab rat. Wouldn't it be better to treat for the Lyme and co first? But for how long, I just don't know. Many of my Lyme friends say that for someone like her who has had Lyme and co for 10 years, but has gone untreated, that treatment with abx will go on for years. They tell me that she will get better. Year 1 is almost done, here comes year 2. When will we see improvement?

    I can't afford ARV anyway. Where would I get her treatment? Would the treatment even work? Would it harm her even more?

    I am so afraid that I will make the wrong decisions! This is a girl who used to be a straight A student and who was Ivy bound. Now she can't even get out of bed much. I have spent 10's of thousands of dollars on testing and treatment. For what?

    I am grateful for your posts and the iformation that you provide, but it scares me. What if the Lyme path isn't the right path? I want to get my girl well. Period. Ideas?

  13. >Another route many have taken is alternative treatments. I was a firm believer in antibiotics and standard medical care until my wife came down with Chronic Lyme. That's when I started researching, joining support groups and learning for myself.

    She now has it in remission and is back horse back riding, skiing, sking diving and running a small bussiness.

    I collected a lot of information in the the 3+ years on her road to wellnes and now make it freely available on my web site.

    Scott Adams

  14. >It the meds can't help for viruses, particularly antibiotics, they shouldn't be given as a "broad scope" treatment. My sister was treated the same way and developed c-diff and almost died – totally needless suffering brought on by a "doctor" at a nearby hospital who was guessing himself right out the door.

  15. >I share your skepticism about the ILADS guidelines and the tunnel vision that many lyme doctors have, but I must say that it's not true that they're not paying attention to viruses and XMRV. My LLMD has enrolled many of her patients in a low-cost trial involving XMRV testing and correlation of results with parameters like CD-57. At some point, someone has got to figure out how to differentiate the symptoms of Lyme, CFS, and other conditions- if that's possible.

  16. >Why would you expect lyme specialists to be treating a retroviral illness anyway? They concentrate on bacterial tickborne ailments, which are hard enough. You should be contacting AIDS doctors, CFS doctors, infectious diseases doctors. They will know the most about testing and the drugs/side effects for retroviral disease. Your harangue is misguided and unfair.

  17. >Many Lyme docs are still hostile to a potential viral aetiology of chronic Lyme. After several years I went back to a doc who treats Lyme and biotoxin issues (along the lines of Shoemaker). I was surprised to find out that he flatly refuses to even consider a viral cause – despite high EBV, HHV6,etc. One thing that is interesting though is that he uses a cytokine profile – like what's discussed at WPI and Klimas – to support a Lyme diagnosis. In my case, no clear case of Lyme but high viral levels but he's adamant that Lyme is my problem not a virus!

    To the person above me…people go to Lyme doctors because ID doctors do NOT deal with you. They don't believe in chronic Lyme and they most certainly don't believe in CFS. As far as CFS doctors, you can count the ones in the US on one hand who will actually acknowledge it and even attempt to treat.

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