Deep Breath

Can we give it a rest for now? I don’t want to moderate or censor, so I’ve let the mold war go on, but it was a little like being kidnapped, since the rest of the discussion died. I felt unheard; it’s annoying to be told again and again that your observations of your own triggers are incorrect. As I believe I made clear, I support the mold warriors theory in part, just not to the extent they would like, but that makes me a dissenter. On the other hand, I got mail blaming me for giving them a forum. And mail holding me responsible for other peoples comments! Maybe I’m dreaming, but I’d like to think it’s possible for us to come together and further the discussion without overwhelming it. I did ask them back channel to have their say and let it go for now. It will come up again, no doubt. It seems a good time to ask everybody, please, could we try to show a little sensitivity to the rest of the group? We are a sensitive bunch.

There is lots of disagreement. Contradictory ideas abound. Rumor has it that when I started AZT, a well know CFS doctor predicted it would kill me:). We’ve lived in the dark for a long time, but it should be different now. We have a framework from which to further the discussion. We are in a place to finally figure it out. Mold fits as a trigger. Anything that turns on an inflammatory cascade favors the virus, maybe even “ick”.

I appreciate Dr. Enlander’s considered comment. I like you too Derek, and I appreciate that the financial realities of studying Ampligen are not of your choosing. Personally, it would take a lot to get me to undertake long term intravenous treatment again, without a very good statistical chance of success, and I just don’t see it here. The data presented looks like 16 of 100 people will do better than placebo. Presumably a few of them will do really well, but a few will do worse. Not very good odds. Maybe a little better if you’re XMRV positive. I haven’t seen anything about adverse events. People are writing to me that they are desperate to access it, despite its being financially out of reach. It involves paying out of pocket for the drug, the doctor and, in many cases, relocating for a long period of time, enduring two infusions per week, and the effects are temporary. I think I’ll wait this round out, thanks.

I am feeling a little worn out by all the contentiousness. We need to lift each other up, not bring each other down. There must be a way of sharing without clobbering one another. Our goals are aligned, even if we are not all on the same page at a given moment. We all have enough troubles without fighting amongst ourselves.

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35 thoughts on “Deep Breath

  1. >Sorry, but I'm not as medically and scientifically knowledgeable as some, but what I'd like to know is are antivirals/antiretrovirals the ONLY way or couldn't 'immune modulators' be used to strenthen the immune system giving our bodies a better chance to fight the viruses some (most?) of us have. I understand that a retrovirus becomes part of our DNA, but if XMRV has been found in 'healthy' people doesn't that mean that they're immune systems are 'stronger' than it? Perhaps I'm missing the 'genetic' factors and I apologize if I'm wasting anyone's time here. I'm hearing good things about GcMAF and wondering if there are any 'trials' in the US that we might be able to participate in?

  2. >This is the problem when not enough science is being done on a disease. It created one giant mess; patients are left to their own devices which in turn leads a lot of them to become fixated on one possibility or trigger of their illness. I used to be that way with Lyme until I went through two years of intense treatment with one of the best LLMDs with no improvement. I realized that Lyme was not the "it" for me.

    We are all stuck in medical no mans land and some people handle that differently then others. Some people are convinced of a single cause of there illness and lash out at anyone who disagrees with them.

  3. >Luke, I agree with you…I too suffer from 'mold sickness', but I'm convinved that the sensitivity to the mold was caused by the immune system dysfunction that was ALREADY in place when I was exposed to the mold…I don't believe that the mold 'triggered' the CFS, since I had been exhibiting other 'symtpoms' of CFS for years prior to the onset of the obvious mold sickness symptoms.

  4. >I agree with Julie, what about products that increase the immune system activity as transfer factor, colloidal silver o Immunoferon?

  5. >Hi Jamie,

    I agree the antagonism is not good for any of us. I hope we can work it out and have started a group to try to figure this problem out.

  6. >This is precisely why I avoid patient forums like the plague (sorry). So much concentrated misery, so many different protocols, so many theories, so much infighting. It's exhausting.

    I am on one group, though – we Cheney patients have a Yahoo group that includes us only. This is manageable in terms of message volume, and it really helps that we're all on the same protocol. It lessens the "Am I really doing the right thing?" worries.


  7. >It seems that too many people are still preoccupied with the idea that it is their co-infections (or whatever) that are the primary illness.
    Perhaps when the precise mechanism(s) by which XMRV causes the underlying immune deficiency, the reasons (be they genetic, co-viral or anything else) for the different clinical manifestations of it, will become obvious.

  8. >Alas, it is so very easy to blame THEM, whomever them might be. It is so easy to be angry when one has a "incurable" disease and virtually no one in the medical community gives a sweet whoop. It is so easy to send off anger and frustration…

    Research seems to support that long-term anger is immunosuppressive, so what do we gain by holding on to it?

    My quest — question of the day, every day — How happy can I be today? Whether or not, my decision to extract whatever happiness I can from this day has any impact on ending the ME/CFS part of my life, who knows?

    What I do know is I feel better when I'm giving and receiving love than I do when I'm in anger mode. I am sending loving compassion to our fearless leader for voicing her thoughts! You go, Jamie!! Loving thought to anyone else who reads these words.

  9. >Thank you, Jamie! I love your ability to calm things down.

    So, everyone, I am very curious about this GcMAF, which I heard about here for the first time. Has any doctor done any sort of trial of it with ME/CFS patients? Does it have side effects? Is anyone considering trying it? It sounds intriguing to me, I'm not sure why, since I'm generally a treatment skeptic (awaiting the well-controlled studies).

    I have another question, one that always comes up for me when people talk about drug treatments that involve infusion. It is my impression that low blood volume is a huge issue with CFS, and with me in particular, I guess because it is so hard for me to be upright. Is it possible that a simple bi-weekly saline drip would be helpful to people like me, and that one reason some folks seem to respond to Ampligen (for example) is that it is an infusion?

  10. >Please don't feel responsible for the comments. Maybe the comments were there because your blog is important, there is little news (not everybody knows what to do to keep up and step up advocacy during low news), and once mold and ick were discussed, they seemed on-topic (just this once) because some details of the hypothesis and some comments on it were articulated in one place (which doesn't happen all the time).

  11. >I cannot recall seeing anyone tell Dr Jones that her observations of her own triggers are incorrect.

    Nor do I remember the slightest proposal that Dr Jones should "walk out naked" and go live in a tent, as was intimated to "Lisa and Erik" in a response.

    And despite repeated explanations that "causality" is not being claimed, the concept keeps being shifted into this role, the better to find fault and dislodge it.

    If the messages have not be deleted, then we can certainly go back and check.

    The manner in which biotoxin-illness is relegated to 'theory" status can be safely interpreted as a form of "dissent".

    As I've related to Dr Jones, these are just "observations" from the inception of the syndrome.
    These are reports of possible clues to the nature of that particular illness; evidence which is now supported by Dr Shoemakers test protocols.

    If the goal is to allow objectivity and science to prevail through reasonable discourse and meaningful dialogue, clearly, it has not done so on this occasion.

  12. >I like the suggestion that the mold/ick warriors create their own blog. That would allow extended, registration-free discussion that is always on topic.

  13. >I want to thank you again Dr. Jamie, for your blog and your honesty. We can be a surprisingly rowdy bunch, given how crushed we often are. I am relatively new to being very sick and have not yet found any treatments that work. I hope to be one of the first patients when the WPI clinic opens.

    One thing that occurred to me today: After so much uncertainty, I can appreciate the fervor with which many folks hold onto anything they find that is diagnosable or treatable – mold, parvovirus, b12 deficiency, whatever.

    We have an acquired immune deficiency and we have each acquired different immune deficiencies. No one expects all AIDS patients to resemble one another, nor respond to the same treatments. So too with us.

  14. >Paul Beith runs a very nice group devoted to the "Locations Effect" in ME/CFS.

    Many people with ME/CFS have reported that they feel much better on vacations to certain places. The Caribbean and Greece tend to get good reports, for instance.

    Some people who have moved to these "Good Locations" have experienced partial or full remissions from their ME/CFS.

    Why some locations are better than others is unclear. I believe that for me, it's related mostly to biotoxins. But there may be other factors as well.

    Dr. Sarah Myhill tells her patients "I'm afraid you'll have to go on holiday" to see if they have a mould problem at home. She suggests places like the coast of England or Spain for the test.

    Some places can be "Bad Locations" for people with ME/CFS, making them go from just moderately to very sick. We discuss those as well.

    Paul's group is designed to be a friendly atmosphere for people to share information about this topic.

    If anyone reading this would like to join some of us there for pleasant discussion on it, we would be delighted to have you there.


    Lisa Petrison

  15. >Who ever said mold "triggered" Cfs? Not Erik, not Lisa, not Samuel, nor any other of the mold warriors. If you're going to argue against it, at least get what you're arguing against straight. Like enlander, they are suggesting a model whereby you have a genetic predisposition to not deal with mold toxins like the rest of the population, followed by a viral trigger which throws immunity amuck, followed by exposure to the mold toxins which exacerbates immune deficiencies, inflammation, and detoxification.

    The only one that seem to be saying that mold triggers cfs are the ones arguing against it.

  16. >Please have some common courtesy and stay on topic. This is not a mold blog. There's nothing wrong with stating your ideas briefly and then leave a URL for those interested.

    Drowning out all other conversation is just plain rude.

  17. >All very well said, Jamie.

    I find that anger and other negative emotions make me sicker. I am more well and able to do more if I keep a more positive attitude and try to avoid anger, outrage, and similar stressful emotions.

    Certainly we all have a lot to be angry about, as a patient group, but I feel as though I can't change what has happened in the past, but I can control my own reactions to it and hopefully, make some positive contributions going forward. That's just what has worked for me and for my family.

    As for Julie's comment way up above about immunomodulators, I have always thought that, too, but so far, haven't found anything that's really effective at that. From the very beginning, when I noticed a sore throat accompanied every crash or flare-up, I thought, "if I could only get my immune system back to normal, everything else would follow," but not much luck at that yet.

    I've tried probiotics (which I still take for GI but didn't seem to affect my immune system), various mushroom blends (the research looks good but I didn't see any effect), and various natural anti-viral/antibiotic/antifungals, including olive leaf extract and oregano. Those help somewhat, especially the olive leaf, but as I often say – some things help a little but nothing helps a lot.

    I am currently trying Immunovir, I believe the only prescription immunomodulator out there, and so far, so good, but again nothing earth-shattering.

    If anyone knows of more effective immunomodulators, I'd love to hear about them.


  18. >I too am tired of moldninjas, or moldwarriors or whatever they like to be called. Please stop the mold hijacking. I read mold blogs for discussion on mold, and when I read XMRV blogs for ideas about XMRV I hear about mold. I'm not saying I disagree with the mold theories, and yes it is good to discuss possible connections between the two, but not every time. I hope the next blog will stimulate a worthwhile conversation.

  19. >I didn't say it before, but Thank You, Jamie…you're an angel, and I'm so grateful for all you do ♥

  20. >Jamie , what do you think about the State if the Knowledge conference? The agenda and all the topics bring discussed. I would really like to gear a break down of these papers as you so eloquently do . What steps are needed to make everyone understand this is an aquired neuroimmune disease this isn't about CFS, FM, GWS anymore . How do we get the NIAID to take acquired neuroimmune disease seriously? What did AIDS patients do that we aren't?

  21. >Jamie,

    Could we persuade you to take a shot at defining what ME is and what tests you would use to diagnose someone with ME?

    Of course, part of the problem we have is that according to CDC definitions just about anyone that is tired can get labeled as CFS. They must be tightened up with "real" tests and not silly meaningless symptoms like malaise, fatigue, headaches, etc.

    What potential "subsets" do you see?


  22. >Dear Jamie~

    Thank you again for your considered post..
    I know it does get to be a bit much when you feel your post has been hijacked and then you start receiving emails and then people comment on your reply as if they know what all of the emails you received said ~ sheez… Chill folks..Please..

    If anyone has been listening…. it's NOT just about ME/CFS anymore… It's about this retrovirus and then all of the co-infections that help trigger it and make us worse… so make any illness that makes you worse and that would be another subset besides what other tests you are positive for….

    As another XMRV+ I also am choosing NOT to do the Ampligen… unless they get it made into pill form.. After 24 yrs could not tolerate what it takes to get it done let alone go thru it… Taking any ARV pills will be enough.. and then
    dealing with the co-infections…

    I for one am trying to rest B4 the SoK this week so I can stay awake for the whole thing both days.. .. and then will sleep a few days and then start writing my CFSAC Testimony…

    What do we need to do to get some Nails sent to that Workshop for the Coffin, Stonybook, etc gang… Thank Goodness Snell and Dr Judy, Dr. Bateman, Pat + Mary, and few other Good ones will be speaking..
    With this Agenda the "end round-table" should be a good one.. I'll have to set the alarm in case I doze off.. don't want to miss that…

    Someone asked what AIDS patients did that we aren't.. Well, it was actually the HIV patients and they did what's called ACT UP !!! The AIDS patients were already bedridden at that point… I had 5 friends that died during that period… Get your Friends and Family to ACT UP if they Believe and want to Support YOU…or if you are still well enough than YOU do it…
    NO MORE "inside voice"~ Period…
    It's 3rd Generation PANDEMIC Time….

    Thx Dr Jamie~

  23. >While I don't think I have a problem with mold, I do seem to have an environmental sensitivity to something. My older sister not well (and diagnosed with something else), but functional. She has similar symptoms as me, but she was not hit as severely. She has never been formally diagnosed as having ME/CFS but I recently (last week when she came to visit) took a look for crimson crescents in her throat, and not only does she have them, they are even more pronounced than mine. No other healthy person I have examined has them (even though about 4% of healthy people may have them).

    Anyway, she lives in a moldy house in Portland, Oregon. Old as in hundreds of years. No, she did not get sick in the house. In fact, she has been doing better since moving there from living in Los Angeles. The basement of that house has flooded many times and is full of mold (though it has been remediated).

    That being said, she came with me back on a trip to my old house in Tahoe. I felt fine there for a couple days, and then I started feeling so sick that we decided to change our vacation plans and go back to the bay area. My sister flew home, so I didn't see her after that.

    Anyway, I had no idea, but when I recently talked to my sister, she told me that after visiting Tahoe she had one of her worst flares. The same symptoms as me, plus gastrointestinal symptoms and vomiting. She said she felt so anxious for a couple weeks and felt like she was going to die (feelings I am too familiar with). The level of anxiety cannot be understood by somebody who has not experienced it. It makes fight or flight go on 24×7. I have had "panic attacks" That lasted for several days with a resting heart rate in the SVTs range. While this is an extreme amount of anxiety, this is not a panic attack, and the clinics and ER did not believe me even though I monitored myself at home.

    My point is, in my sister's case (and maybe my case as well), I don't know how much of a factor mold plays (if at all) since my sister's house probably has every kind of mold you can imagine, but unless these shared experiences were all a coincidence, there does seem to be some kind of environmental impact on our health.

    And coincidentally, after visiting Tahoe, my little brother had a few (as in 3) ER trips because of a racing heart plus symptoms that seem strangely familiar. I do worry about him a bit, but all this seemed to stop after Ceftriaxone IM, Zithromax, and the vitamins I take for methylation. Even though he was resistant to take these vitamins at first, he now voluntarily steals my vitamins at times because he says they make him have more energy throughout the day. They diagnosed him with bronchospasms (without any type of testing) and gave him an inhaler. He says the inhaler makes him worse, but the vitamins seem to prevent the symptoms, especially when he is training.

    This is just part of my (or should I say our) story.

  24. >Agatha….yes, Saline infusions are known to be quite helpful for many of us. All of 2009, I was on IV Tx requiring weekly infusions up to 3 liters of Normal Saline. After these infusions, I was 80% symptom free for 2 days. Great for symptom relief, but does little if anything for the long haul.

  25. >Hi Ross! So is there a down-side to getting saline infusions 3 times a week over the long haul? Can we lobby for this as a "treatment"? Can we lobby for research to prove this helps patients to function? I'm sure it would be hard to get insurance to pay for it without good research. I personally would settle for being 80% symptom-free, until there's a cure! And I'd be happy to sit for infusions in exchange for having my life back!

  26. >Hi Agatha, What I meant by doing "little over the long haul", is just that the infusions are probably not doing anything for the real problem. Still, symptom relief is a good thing, especially since we have so very little in our palliative care arsenal.

    I've heard of a number of people doing these treatments, but I'm not sure how they are paying for it since it's doubtful any insurance would pay for regular NS infusions that didn't involve medications. I suppose one could be creative with cost reduction ideas. The NS and the IV equipment required for the infusion, would be inexpensive…it's the Clinic and Nursing costs that would add up fast. I wouldn't do any of it without a good doc who knows and understands ME/CFS well.

  27. >Hi Ross! I read up a bit on this, and saw that Dr. Bell has a number of patients that have had a port put in so that they can have daily NS infusions (perhaps they can do their own infusions with the port and reduce costs in that way). The problem with this treatment, apparently, is that the patients eventually get scary blood infections from the port. He says there is a 20% chance per year of having this happen, and that there doesn't seem to be a way to eliminate this risk. Some patients have accepted that risk and continue on the NS, even after hospitalizations with septic reactions; others find the risk too much to handle.

    Dr. Bell believes that research should be done on this treatment, but he said that a blinded study would be difficult. I was thinking that in a clinical setting, you could do a blinded study by not allowing patients to observe whether the saline solution was actually going in or not–you could give the controls a little jolt of fluid to simulate the feeling of the start of an infusion. This would be such inexpensive research, I think. Since the treatment takes effect quickly, it could be a short-term study. Then the details could be worked out: how much fluid would be needed, how often, etc., and whether patients could go for twice-weekly infusions, for example, without running the risk of infection.

    Dr. Deckoff-Jones, this is a short-term solution for many patients, while we wait for longer-term treatments. According to Dr. Bell, it is highly effective for many patients. Is there any chance that the WPI would be willing to undertake the research necessary to get approval for this, so that insurance would cover it? The effects are apparently quite dramatic, so any study should show unambiguous effects.

  28. >I didn't say it was "mold", but rather that it was an "effect from mold".

    I used to just say "the effect" and point at it, but that wasn't good enough, as "You are not making sense or telling us anything".

    So I explained that this effect appeared to be emanating from mold colonies, which was now "too specific", and immediately caused rejection since "mold doesn't do that".

    It's as if people seem to think if they can find some fault with the way this effect is explained, that this somehow negates the need for research, and effectively resolves the situation.

    Meanwhile, people continue to be felled by this stuff, whatever it is.

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