Although we are clearly greatly improved, it still doesn’t feel like solid ground. We are bobbing on the surface. The underwater times are brief, but they are still there. When the illness does rear it’s ugly head, the downhill excursions have been relatively mild and not scary like they used to be. It’s been a while since I considered an intervention for either of us more invasive than herb tea and tincture of time. We haven’t been to the ER for quite a while and it doesn’t feel like the regular visits of the past are in store for us anymore. It’s a great deal, but not everything so far. I’m still searching for adjuncts to strengthen our gains. The knowledge of the underlying cause of the illness and the emerging ideas about what may be happening in terms of pathogenesis allows contemplation of new strategies.

When I first started blogging, it never occurred to me that we might not be representative of the people trying treatment or that the numbers would be so small. It may still turn out that others will respond as we have when more time has passed. It is very early days. I’ve done a lot of soul searching about what it means to give people hope when it might not work. But I think that even if these drugs don’t work, or only work partially, it’s not false hope. I do think that there’s light at the end of the tunnel, though it’s a long, dark tunnel still. The experiment with existing antiretroviral drugs moves us ahead. It puts the government on notice. It puts the drug companies on notice. It puts the ID doctors on notice. There are a phenomenal number of people who need treatment now, not in a few years. The faster that people accept causation, the fewer man-days lost in hell.

It seems so far that most CFS patients feel worse, at least for a while, when they start antiretroviral treatment. In my opinion that has nothing to do with safety of the drugs, but more with an interaction between the drugs and the virus that we don’t understand. We have no idea why people feel worse, but it is almost certainly NOT side effects of the drugs for the majority. HIV patients generally feel fine starting the same drugs. For most, the flare that occurs starting antiretrovirals seems to subside, but no one knows at this time what will happen for any individual. The patients who are writing to me who have started therapy are fully cognizant of what they are doing and why. They feel that they are participating in something bigger than they are, as do Ali and I. The knowledge that others might be helped makes it easier. They know what happens if they do nothing. They have a right to find out now if these drugs will work for them. When formal clinical trials finally start, it will still be these drugs, because that’s all there is for now.

As far as treatment of opportunistic infections is concerned, if an HIV patient gets Pneumocystis pneumonia and is treated with antibiotics, they get over it and feel fine. Does that mean that Pneumocystis is a cause of AIDS? No, the cause is still HIV. It is a silent killer. Treatment of the opportunistic infections and other issues, like low testosterone, will allow the patient to feel better. They will still end up dying if you don’t shut down HIV. This may turn out to be similar in XMRV/HGRV infected people. When their retroviral infection is controlled, treatment for their opportunistic infections, viral, bacterial, protozoan, might actually work.

If we could depend on our governmental agencies to treat this with the urgency it demands, it wouldn’t be necessary for people to experiment on their own. But as it is, some feel they have no choice. Several have written that they are not going to commit suicide yet because of the experiment. That they are going to stick around and see what happens. I submit to you that it’s not all about this protocol. If not these drugs, there will be XMRV/HGRV specific drugs in our future.

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9 thoughts on “Hope

  1. >"We have no idea why people feel worse, but it is almost certainly NOT side effects of the drugs for the majority. HIV patients generally feel fine starting the same drugs."

    How do you reconcile this statement with the finding that "an impressive high prevalence of DD in HIV-infected patients was demonstrated" in a recent study of HIV-infected individuals treated with HAART http://thomasland.metapress.com/content/aw730150745q64h8/

    It is also clinically established that AZT damages mitochondria. Whether you and Ali "feel" the effects does not determine whether that is or is not clinically happening.

    Most CFS patients in Dr. Cheney's office already test for diastolic dysfunction. Adding HAART may worsen the severity of the preexisting diastolic dysfunction, and to say without hesitation that the worsening is NOT due to the drugs themselves is clinically irresponsible at this point in time.

    I have admired your willingness to try the drugs and report for the benefit of an entire community, or as you put it, something greater than you are. It is a noble cause, as are your advocacy efforts and willingness to butt heads with the authorities that dilly-dally through the process of determining test accuracy and pathogen causation. I actually agree with you that the retrovirus is likely to be causative for at least a subset of patients. I just think it's important to point out the inherent weaknesses of the current protocol and tell patients that it's worth waiting for a drug protocol that IS more specific for our own inherent weakness (diastolic dysfunction, mitochondrial dysfunction, inflammatory flares etc) and does NOT exacerbate these conditions.

  2. >Thank you, Dr. Deckoff-Jones. In a perfect world, our government (through the CDC) would not have covered up this illness, with the assistance of the CFIDS Assn of America, our so-called "advocacy" organization. The funds s allocated for research of this illness would ot have been misused for all these years. In a perfect world, drugs would have been developed which would not have the disadvantages Anonymous, above, cited.

    This is not a perfect world, and our government and our so-called "advocacy organization" have failed us. I have been suffering with this illness for 24 years now, and my patience has worn thin as I have seen my life dissolve around me. I no longer have that option of waiting (for how long?) which Anonymous recommends. If I am going to have a life, I have to do something now, not in however many years it takes for some better drug protocol to be developed.

    What is left of my life now is barely existence, and a very painful and deprived existence. If I have to risk my life to have a chance at having a real life again, then that is what I must do.

    I applaud you, Dr. Deckoff-Jones for your courage in trying the antiretrovirals and especially in sharing your experiences.

    Patricia Carter

  3. >It is each patient's right to choose what to do. Make no bones about it: I respect Dr. D-J's decision as well as anyone else's decision to try these 3 drugs. I just think that it is important to try to paint a fuller picture of the potential adverse consequences, in addition to the potential benefits, especially in light of the study I posted above about diatolic dysfunction in HAART-treated patients.

    Patricia–in a perfect world, not only would a better HAART protocol be developed, but HIV would be eradicated, and soon, XMRV as well. I am not so disillusioned as to believe that will happen soon or even ever. I am a CFS patient and I too consider myself barely alive. I too share your mistrust of the CDC, NIH, or even the CAA to act in our best interests. However, a one-sided account of these drugs also is not in our best interests.

    I take no issue with Dr. D-J blogging about her own experience with the drugs. She has free range to say whatever she wants in that context. However, once she begins extrapolating her and her daughter's experiences to what she thinks is best for or happening clinically in other patients, her responsibilities as a clinician become very applicable, very real, and very magnified. Because of these very extrapolations (and sometimes solely because of them), CFS patients are beginning to take these drugs. In this case, it is absolutely her moral and professional imperative to paint an accurate picture of the risks involved based on the scientific literature available.

  4. >@ other anonymous. your cited study says,

    "Traditional cardiovascular risk factors substantially contributed to the development of DD in the HIV-infected cohort."

    not haart. haart was cited as the reason for extended life function therefore development of heart disease as is common in the general population. the biggest association was with hypertension and diabetes. your citation has nothing to with hiv patients feeling worse (or not) after starting haart.

    while there may be mito issues in me/cfs, or diastolic dysfunction, to my knowledge this hasn't been established outside of anecdotal clinical observation. if cheney's really concerned about the cardiac health of patients then he is welcome to publish.

    as there currently are no other accounts of these drugs, or at least ppl taking a cocktails like deckoff-jones and daughter, this is MOST DEFINITELY in our best interest. patients are clamoring for clinical trials. ila singh cited blogs (probably this one) as one of the reasons she's talking with drug companies to start trials. if this blog serves as a catalyst then so be it.

  5. >This study is much clearer as it controlled for traditional cardiovascular risk factors:


    "Our objective was to determine the prevalence of diastolic dysfunction in HIV-infected patients without cardiovascular symptoms….Cardiac risk factors or poor prognostic indicators of AIDS progression were uncommon with no difference between subjects with or without diastolic dysfunction…A high prevalence of diastolic dysfunction (37%) in a cohort of HIV-infected patients on ART at low risk for AIDS and cardiovascular disease was demonstrated."

    I never said it wasn't in our interests for Dr. D-J to publicize her account, just that her extrapolations to the rest of the population need to either come with some major caveats, be more balanced in their description of risk factors and benefits, or ideally, both.

  6. >Also, I made no attempt to account for why other patients feel worse on ARVs. That wasn't the point of my posting these studies. I'm much more concerned about permanent damage to the heart in a population of patients already suffering from mitochondrial and diastolic dysfunction.

    By the way, just so we're clear, you're saying mitochondrial and diastolic dysfunction is completely anecdotal? I'm pretty sure Dr. D-J would disagree with you on the mitochondrial part, as she wrote:

    "I haven't seen or heard any indication that all the fear about AZT exacerbating the EXISTING mitochondrial defect has any basis in clinical reality."

  7. >When Cheney, who has been seeing patients for over 25 years, says he sees diastolic dysfunction in over 96% of his patients (a number duplicated in his poster presented at the NIH conference), I choose to take it seriously but that's just me.

  8. >I am happy to read you two are still up and about :)

    I want to get back to work, too.

    Disease has taken our careers, our home and our social lives.

    My wife and I have different disabling diseases. Rugged individualists, to the last…

    Both of us have periods where it does not seem so wretched… but, laying in bed in a relatively good mood for a few hours a few times a year is not what I call "Rock'n'Roll".

    I call it life. Improvised, but, obviously not Jazz…

    The worst thing about this disease is it does not allow me to understand how stupid I have become. Worse, having this disease does not mean I was not always stupid.

    It just means I am no smarter.


    PS We will always have critics ;)

  9. >I appreciate the way you are sharing and problem solving with your blog. I myself am living with a perplexing long term physical condition that has eluded the efforts of a whole variety of healers and solutions. Although I am able to function relatively normally with my condition – and to give the impression of being totally healthy to much of the world – I do have have to live with serious limitations. As such I can totally relate to the urgency with which you are pursuing a solution, and in the hope that you are finding in the improvements you have experienced from your current treatment. I wish you and all the other sufferers of CFS and ME the best of luck in your efforts.

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