The Treasure Hunt

I was in Reno last week. It was an honor to be there to meet Dr. Lipkin and hear about the study from the horse’s mouth. I also had the rare opportunity to listen to him brainstorm a little with Frank Ruscetti. It had a historically important feel to it. Dr. Lipkin is committed to being the perfect referee, “agnostic”, but I thought I saw the glint of desire to dive in to the discovery process. Dr. Ruscetti is a rare human being who sees his work in the context of the big picture. He is a realist, who never loses site of the patients that are the reason for the work in the first place.

The study, at a cost of $2.3 million, is designed to answer two questions:
1. Do XMRVs, and/or polytropic MLVs, exist in humans?
2. If so, do they occur at higher rates in CFS patients than healthy non-contact controls?

25 patients and 25 controls are being selected by 6 doctors, Montoya, Kamaroff, Bateman, Klimas, Levine and Peterson. Inclusion criteria are very restrictive to a particular subset of CFS that includes sore throat and lymphadenopathy. Samples will be split in Dr. Lipkin’s lab and two from each patient will be sent to 3 labs, the WPI, Lo/Alter and Switzer, where each lab gets to do their own thing. The study will be concluded to be positive if any lab can find 2 positives from the same patient. Discordant results will be decided with a third specimen.

I think we are OK, that it’s a fair playing field. The most commonly asked question in the patient community right now is with respect to the possibility of specimen tampering at points of inception. Even if that did happen at one or two sites, it would skew the stats, but wouldn’t cause the study to be completely negative. It is wrong that so much rides on one study, that nothing else will go forward until it is completed, and that one man has been made judge, jury and executioner, though I came away with the impression that he was a good choice for a difficult task.

Drs. Mikovits and Lombardi, Max, Shanti and Svetlana, have their work cut out for them, 600 specimens, each needing multiple tests. The best possible outcome for the patient community is that the WPI finds XMRVs/HGRVs at a higher rate in patients than controls, that Lo/Alter find the Ps at a higher rate in patients than controls, and that Switzer finds nothing, as expected. Dr. Lipkin mentioned more than once that, when the study is over, there will be a valuable repository of specimens remaining to look for what is there, should the study be entirely negative. At the end of his public lecture, he said that if anyone in the audience wanted to write a check for a million dollars, he’d find out what’s going on; good news, though the comment caused me pain personally, confirming what we all know, that we have the technology, but it isn’t being applied. He lectured about past virus hunts that only took days, also rather painful for this audience to hear. Almost the best news for me was that he said that CFS “smells viral” to him. He is involved in autism research and said that he suspects thimerosal in vaccines may in fact be implicated, not a popular stance with the vaccine companies. Let us hope that when this exercise is over, “the virus hunter” will be inspired to hunt viruses for us.

I had an opportunity to discuss antiretrovirals with Dr. Lipkin and to share my personal experience. He stated his disapproval vehemently. I told him that we had significant anecdotal experience at this point and it appears to be better than placebo, though disappointing in speed and scope of response. I stated my opinion that prescribing arv’s constitutes the usual and customary off-label use of drugs, a decision to be reached between doctor and patient. We obviously disagree completely in terms of whether or not the prohibition against these particular drugs is justified, but, even though he had strong feelings on the subject in the present tense, he concluded it needs to be studied, though everybody agrees that, in the current economic climate, there’s no money for what will need to be a long, complicated study. I didn’t get the impression that he was in any way discounting the possibility of a family of retroviruses with too much sequence diversity to be found when looking with our current lenses.

It was my 5th trip to Reno in 10 months. It was short, but the most stressful for me so far, maybe because it felt so important, though it was good stress, not bad, while it was happening. I felt “on”, but not anxious or consciously uncomfortable. I returned home still feeling strong. The day after I got home to Santa Fe, the Las Conchas wildfire started, now the largest in the history of the state of NM, over 100,000 acres, threatening the town of Los Alamos and Los Alamos National Labs. The air quality has been extremely poor. Here is a picture taken from our house, the night the fire started. The smoke is pluming all over Santa Fe and environs, making the air quality unacceptable for people with pulmonary disease. Mitochondrial disease too, I’d bet.

Despite lots of oxygen, which helps everything during administration and for a while after, I’ve been in crash mode for six days now. First time I’ve gone down for more than a day since December, when I caught a cold after my second trip. No cold now; just CFS. I don’t like to report bad news if it takes away hope, but my commitment is to reporting the truth. Sleep, always a sentinel symptom for me, was the first to go. Then pain, nausea and orthostatic intolerance have put a serious damper on things. Cognition is the last to go for me, thanking God for the not small favor. Clearly, I am still at risk, despite dramatic improvement over the last year.

Ali has been doing better since starting Meyer’s cocktail with Leucovorin, plus glutathione, IV pushes and supplemental oxygen by high flow concentrator (10L/min delivered by non-rebreather mask). She does an hour or so of oxygen a day, and the effects are so immediate and positive that she doesn’t have any resistance to doing it. At this point, we both consider the concentrator a no-brainer. She hasn’t tried the chamber yet. I’ve been going in about twice per week and using normobaric oxygen by mask about twice a week as well, and I haven’t decided yet whether I think the chamber adds enough to justify the expense/trouble or not. Ali had a friend visit her for 10 days recently. She used supplemental oxygen ad lib the whole time, was much more active than she has been able to be since last fall, and didn’t crash afterwards. She remains more resilient, despite the fire. She is wanting to get out of the house and just ordered some protective masks that she hasn’t tried yet, which people are wearing in Santa Fe now anyway.

Ali’s MCS symptoms are subsiding somewhat and, if not triggered, she is doing really well. She can wear clothes from the dryer again, though choice of laundry products is crucial. She and I both believe that her symptoms are not triggered by chemicals per se, but certain strong odors, so hyperosmia, much the way some patients have hyperacusis and photophobia, which are also cranial nerve dysfunctions. I believe these sensory symptoms to be related to dysregulation of the cranial nerve afferants, which are relayed through nuclei in the dorsal brain stem, and then to the thalamus, which integrates sensory information to the cortex, regulates arousal/sleep and organizes/controls the timing of the brain’s circuitry. The heightened signal triggers what can be thought of for practical purposes as a subclinical seizure. For some, the instabilities in the brain stem can progress to observable atypical seizures or even full blown tonic-clonic seizures. Here is a study by Frank Duffy at Harvard showing coherence abnormalities on QEEG (measured on the cortex), in patients with CFS, not seen in depressed patients: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients. Duffy/Kamaroff. Inability to detox properly is likely a piece too, but in Ali’s case, I think that the reactive dysautonomia is triggered by input from the first cranial nerve, rather than a reaction to a toxic substance.

I leave for Hawaii later this week to see patients, looking forward to sea level and clean air. My patients all know I’m sick. When I hear their histories, I often remember exactly how that symptom felt to me, even though my illness has changed a great deal as it has progressed. They know that I don’t have the answer and that I don’t believe there will be a cure. Healing and curing are not the same thing. What we do have to fight with is a coherent model from which to plan a strategy for each person from where they are now. It will be two years soon since Lombardi et al was published; it has been nearly shot down by politics, not science, and  nothing has changed from a treatment point of view, other than antiretrovirals haven’t turned out to be the slam dunk for anyone, including me, that we needed. Of course there are hundreds or thousands of drugs sitting on pharmaceutical company shelves right now that might work, but so far, nobody is looking.

Despite my disappointment (not surprise) that the science is not keeping up with the medical need, I remain hopeful and determined. It won’t be fast enough, but I do believe they will get it right this time, even if the route is circuitous. The scope of the discovery is spectacular in terms of the impact it will have on our understanding of chronic disease. It will transform many fields of medicine, but especially psychiatry, which still views our symptoms as arising from a defect of character. We are the ultimate mind body experiment, and it’s not about character, or lack thereof, that our psyches are too closely linked to soma, the body. There is a biological basis. Heightened senses come with the territory. The misunderstanding, even derision, from our supposed caregivers has caused great harm. It is one of the most painful truths in my life that should I be forced to seek help from my colleagues in the conventional medical world, they will likely laugh at me, not to mention do the wrong thing. But there is redemption in turning suffering into meaning, in using painful experience to become wiser. The disbelief has caused terrible isolation. Healing, separate from curing, is possible, in connection with the truth, and in connection with other people who understand and care.

*    *    *

We must never forget that we may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed.  For what then matters is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into triumph, to turn one’s predicament into a human achievement.  When we are no longer able to change a situation- we are challenged to change ourselves…
~ Viktor Frankl in Man’s Search for Meaning

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128 thoughts on “The Treasure Hunt

  1. >Lisa and Erik,

    It's difficult to believe that you think your message is being "dismissed" given the positive response you say you've gotten. I count myself as one of them.

    What gets tiresome is what comes across as the "hard sell." Like we're a bunch of petulant kids who need a daily lecture to keep us on the right path.

    Like you, we can figure out what works for us and what doesn't.

  2. >I concur with Rendere. Especially using someone else's blog to spread the same old information- go to the forums! Start your website! Tell your story on your own facebook page. Write a frikin book. It sounds more like televangelists than anything else. This blogpost belongs to Dr Jones.

  3. >"Exposure to environmental chemicals, toxins and off-gassing products would be stressing the immune systems of all people, but changing those conditions doesn't allow our immune systems to recover and rid itself of the multiple chronic viral infections we have, something else is going on and WPI is trying to find out."

    NEWSFLASH: More healthy people, who also are exposed to chemicals, toxins, and off-gassing products since they are all around us, are XMRV positive than people with ME/CFS, based on the results of the Science paper.

    11-12 million healthy people (in the US) carry the XMRV retrovirus, vs 1-2.5 million folks with ME/CFS.

  4. >Erik said: "It's just mind boggling that CFSers feel such luxury to dismiss clues because it isn't what they wanted to find."

    Some of us don't have the 'luxury', i.e., the funds to get up and move anywhere, let alone get rid of all our clothing, books, furniture, and pay for replacements to start over. We have no money to pay for these serious expenses. Plus, what if we moved, and that place turned out to have mold? And the next place, or the next? Or it had the "whatever" in the air that Lisa keeps running from?

    How could that possibly be 'mind boggling'?

  5. >My goal in bringing this topic up in public forums is not to encourage anyone to pursue any sort of extreme avoidance. That is, quite frankly, no fun at all.

    The only reason that I've pursued extreme avoidance myself is because I've been on a mission to find out information about the phenomenon, in the hope what I learn will allow researchers to develop ways of treating the disease that don't require other people to go through what I have.

    Let's say that I'm right and that accumulated toxicity from certain specific exposures is what leads to the activation of XMRV and other pathogens.

    In my imagined ideal world, I would have gone to the doctor when I first got sick in 1994 and been diagnosed with the disease. The doctor would have advised me to look for and remediate any mold in my environment (something that would have cost me several thousand dollars) and would have prescribed me drugs (developed by pharmaceutical companies) to help me to detoxify effectively the stuff that was already in my system.

    That would have been an end to my illness, allowing me to live the life (work, family, personal rewards) that I deserved.

    Instead, I've lost 17 years and counting. Even if tomorrow I were magically cured, I can't get that time back.

    My hope is that other people who come down with this disease can get a better shake, as a result of a better understanding the overall dynamic.

    This is not an implausible scenario, I don't think. But from what I've seen so far, if I stop talking publicly about this phenomenon, it's never going to happen.

  6. >I believe in the mold /toxin theory for sure. I acquired multiple chemical sensitivities over a couple of decades working in a building that was recognized as "sick". At one point a few people got cfs on my floor (not sure how many weeks, months or years elapsed between their illnesses – within a few years at the longest) and one person on the floor came down with legionnaires disease but she never knew if she got it from work. I'm not sure how my son living with me during the same time period could have caught cfs after getting mono. I think Lisa is doing the right thing. How could anyone with her knowledge about this not speak up? I suspect the longer it takes for this to be known the longer important components of this illness remain in the dark.

  7. >@Cathy — there is no proof 11-12 million healthy people in the US carry XMRV. You can't extrapolate that from one study.

    @Lisamoldyperson — it's rude to hijack somebody elses blog with your own theories and comments regarding something else — this blog is about Jamie talking to Lipkin and about the Lipkin study. Lipkin is not studying mold. Why don't you take the advice of others and write your own blog and then post a link to your blog wherever you see fit. Then people don't have to read 1,000's of posts about mold over and over and over again ad nauseum on threads that aren't about mold to start with. Are you not getting the hint.

    You are being somewhat selfish. And we are smart enough to find this information ourselves without getting it shoved down our throats.

    Thank you.

  8. >No one minds Lisa and Erik speaking up about mold, etc. It is the abuse of this particular blog that shows poor manners.

    Please start your own blog, go to the CFS boards, talk with whoever you want there.

    This blog is not a mold blog. You are being rude. It has nothing to do with whether or how others respond to you. You cannot force people to listen to your theories.

    Please stop being rude and stick to the topic of the blog.

  9. >True enough. I agree. We cannot force people, and should not try.

    My intent was only to let those few individuals who DO perceive merit in the concept know that they are not alone.

    But they are going to have to fight their way through a sheer fire-wall of doubt, disbelief, denigration and denial to make contact with us.

  10. >No doubt, there now are plenty of public forums focusing on the topic of toxic mold. There are even a good many doctors attempting to treat patients for mold illness.

    The problem is that those folks are only looking at the “miasma” aspect — the direct effects of toxic mold (and to a lesser extent other biotoxins) on the body. They dismiss the pathogens as irrelevant, and by and large have concluded (along with most of the world) that XMRV is a contamination.

    I do try to talk to them anyway, but by and large (at least at the moment) it's pretty pointless.

    The interesting part of the question is the intersection of pathogens (especially XMRV) and toxic mold. Insofar as the phenomenon of ME/CFS makes sense, it seems to do so only when both components are taken into consideration.

    My goal is not to take over the comments section of this blog. Generally, when it seems appropriate, I write one or two responses linking the comments in the blog entry to the biotoxin phenomenon. Erik appears to do the same.

    After that, I only post to respond to other people’s criticisms of the theory or answer questions about it. If there are no such comments, I do not post any further either.

    Best, Lisa

  11. >OK, everybody, I think we have been given a hint about how to stop the takeover of this blog by Erik and Lisa: DO NOT RESPOND TO THEIR POSTS! Maybe, just maybe, if we ignore them, their participation will decrease, and we can have a more interesting discussion. It's worth a try.

  12. >Geeze, the mold is causing ME/CFS comments are just as crazy as the XMRV is causing ME/CFS.

    If either were true people would be dropping like flies.

    One obsession replaced by another.

    I'm beginning to think many are just hypochondriacs who think correlation equals causation and are fitting a lot of their symptom recurrence and abatement based on preconceived biases.

    I have ME/CFS. Both camps need to go with the science and stop making us all look like we're crazy.

    Get back on topic. Respond to what is written in Dr. Deckoff Jones column. She doesn't mention mold. :>)


  13. >People ARE dropping like flies.

    And one does not preclude the other, as I am XMRV positive.

    As related in Dr Shoemakers new book, "Surviving Mold", I initally refused to help Dr Cheney start "a new syndrome" because I didn't want my mold story to interfere with his investigation into viruses.
    But Dr Cheney insisted that my evidence and participation was vital to proving his case to the CDC that CEBV Syndrome was wrong.
    I finally agreed after he told me "As a prototype, researchers will take an interest in your individual case", thinking, "Then they will HAVE to look into the mold. They can't very well have a prototype for a syndrome running around with clues like this left unexplained".

    (They never did look, and NOBODY believed me until the Melinda Ballard story broke)

    If one thinks of "CFS" as the entity the syndrome was based on, one cannot entirely discount the mold and forget about it.
    For that is the only reason I helped start this new syndrome.


    Black Mold Exposure docmentary film trailer

    Mold: Hazard or paranoia
    Are these people susceptible or crazy?


    A Mold Movie: Melinda Ballard’s House
    Attack of the Stachybotrys Mycotoxins

  14. >Shhhh.

    In order to make it work, pretending to not notice doesn't count.

    You have to really make it out like we're completely invisible to you:

    Trollology 101.

  15. >Is a female troll a "trollop"?

    In truth, trollops are so alike to troll MEN that some people think there ARE no female trolls, and that young trollings simply SPRING out from under a stone bridge.

    (It's the beards!)

  16. >It has been pointed out to me that my flippant remarks struck some as being a confession to trollery.

    Nope. Just trying to make a joke out of the attempt by some to stomp out relevant evidence by the classic "DFTT, Don'tFeedTheTroll" technique.

    This information is not extraneous to discussions of CFS pathology, and is not intended to challenge or diminish XMRV.

    It's trying to put all the pieces together.

    Dr Ryll noted of his 1975 "Infectious Venulitis" group that Infectious Venulitis, which he began calling "CFS" when the new syndrome was coined, and "Sick Building Syndrome" appeared to be "the same thing".

    "Science" says that pertinent evidence should not be ignored, so unlike the rest of the CFS world… I'm not.

  17. >"We must never forget that we may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed. For what then matters is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into triumph, to turn one's predicament into a human achievement. When we are no longer able to change a situation- we are challenged to change ourselves…"
    ~ Viktor Frankl in Man's Search for Meaning

    "to turn one's predicament into a human achievement."!

  18. >Oh, Erik, you drive me nuts, but I can't help but like you. What a sweet human being you are.

  19. >Can't figure why I drive everyone crazy.

    Everyone else went off chasing after the viral component, and since I didn't have a lab or any means to do research on viruses or bacteria…
    I concentrated on the factors that I COULD study.

    It strikes me as extremely peculiar that CFS researchers went so far as identifying that there WAS an SBS/CFS connection, but totally dropped the ball, never even bothering to find out what it might be.
    Huh? What's the deal with THAT?

    All they had to do was ask someone who was there.

    Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
    Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited.
    Chester AC, Levine PH.
    Georgetown University Medical Center, Washington, D.C.
    Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.
    [PubMed – indexed for MEDLINE

  20. >July 10, 2011 5:20 AM Anoymous:

    "Exposure to environmental chemicals, toxins and off-gassing products would be stressing the immune systems of all people, but changing those conditions doesn't allow our immune systems to recover…"

    And, you know this how?

  21. >Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
    Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited.
    Chester AC, Levine PH.

    We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee,


    Every single person in that room said it was NOT fatigue. Yet someone the "not" is always left out, and "severe" gets substituted.

    Janice Kennedy said "it's like having bricks piled on you".

    So we're a "cult"… are we?

  22. >"When you have eliminated the impossible, whatever remains, however improbable, must be the truth."

    "I never guess. Shocking habit, destructive to the logical faculty"

  23. >Thank you for sharing the photo of your lovely office in Hawaii, Dr. Deckoff-Jones. It is nice to know that you are feeling so much better and that you are living in such a beautiful place.

    Patricia Carter

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