Random thoughts

This post is an attempt to answer the most common questions I am receiving. I’d like to take this opportunity to thank everyone who has written and shared. There is a thoughtfulness and deep intelligence in your letters. So much wasted talent to be reclaimed if the disease can be ameliorated. The unbelievable suffering I am witnessing through my correspondence keeps my hands in the fire, even as we improve, with an urgency for the work to move along as quickly as humanly possible.

The doctors are being incredibly slow on the uptake. Infectious disease specialists should be stepping up to the plate instead of waiting for it to hit them on the heads. But, they are so beaten down by what they already have to do each day and the system they have to function in, that they can’t yet see the greatest opportunity they’ve ever had to be healers. In the end they will treat it nevertheless. For now, shame on the IDSA for not even noticing. The last news on their website is from 2009.

The drugs are hard to get on for most. AIDS patients do not have the same problem getting started that CFS patients seem to. It appears to be an inflammatory flare and all three drugs can cause it, rather than direct drug toxicity, since the side effects of the drugs are well known. It may have to do with a build-up of viral products in the cell cytoplasm when the virus is first shut down. The presumption is that it could be in any cell in the body, so the widespread change in what has been homeostasis of a sort is likely involved. I am tempted to say, if you have to, try: start low, go slow, but that approach is a complete no-no with HIV because of mutagenesis. We do not have enough information to know whether it matters with X, P, Y or Z if we expose the viruses to the drugs at low dose for a short time or not.

Not everyone who has been taking antiretrovirals for several months has improved. We are the only X+ people on all three drugs that I know of. I have been corresponding with one X- patient on all three drugs that is not better. It is possible that there are pathogenic variants that are not susceptible to the protocol we are taking.

For me, the inflammatory flare caused by the drugs subsided in a couple of weeks and it didn’t send me anywhere I haven’t been before. I’m not at all happy about having to say that the drugs may make you sicker for a while and it may take months before you know if they are helping or not. Sounds a lot like Lyme treatment. But there it is. We desperately need quantitative measures.

The main risk that I see to a trial of the drugs, other than time, money and the possibility of feeling worse for a while, is the exposure of virgin virions to antiretrovirals that may not be as good as what we’ll have in a few years. And it is always possible to die or be damaged from a drug. I pray every day that that won’t happen to anyone choosing the experiment; with proper supervision, the risk of permanent harm is most likely low. Lower than the risk of leaving the disease untreated for some.

Our best hope now is that the entire group of human gamma retroviruses can be treated as a whole, rather than requiring identification and separate testing of drugs for each variant. Maybe it will break down to X and the polytropic variants. It seems likely that a recombination event is involved in pathogenesis. Ruscetti J Virol. 2009

We are taking AZT 300mg twice daily, Viread 300mg once daily and Isentress 400mg twice daily, standard adult HIV doses. We are having monthly blood counts and metabolic panels. The only abnormal labs have been the inconsequential macrocytosis caused by AZT. Neither one of us can tell that we are taking the drugs.

Lots of concern has been expressed about the mitochondrial defect in the disease and AZT. I was short of breath at rest when I started AZT and not at all now, so I guess my mitochondria are tolerating the AZT. I don’t mean to be sarcastic; it’s just that this kind of backwards thinking is holding us back. To me, it is common sense that the problems caused by the virus can only be affected by turning it off, including the cellular hypoxia.

Many are thinking about how to pay for the drugs. With positive testing from a CLIA certified lab and documented improvement, the meds should be covered by insurance. Time will tell how much of a fight that becomes. VIP Dx is currently the only commercial lab testing for human gamma retroviruses. AZT and generic tenofovir are fairly inexpensive in Canada, very roughly $100 and $150 respectively per month. Isentress is expensive everywhere, about $1000/month; Merck has a compassionate use program.

Considering the various ways to go about trying to inhibit NFkB, a simple, safe approach is to supplement with curcumin.

Actos addresses several problems seen commonly in this patient population. My daughter’s antiretroviral trial was preceded by the addition of Actos. I knew that we were mucking up the experiment, but she was having horrible reactive hypoglycemia, even with severe sugar restriction, and needed an intervention at that point. As it turns out, she had no problems getting on the drugs at all, which seems to be an exception, so I am wondering if the Actos assisted with the cytokine flare that seems to occur when starting the drugs. It activates PPARγ, decreasing insulin resistance, inhibiting VEGF, dropping levels of certain cytokines.

Low-flow supplemental oxygen by nasal cannula during the worst moments is helpful for many.

I have no personal experience with Ampligen. My impression from my mail is that some have experienced a partial remission from it that generally doesn’t last. It is an intravenous drug which is a serious obstacle. Same comments for IVIG; also it is a blood product…

Reentry Phenomena

           I am Ali Deckoff-Jones, and I am Jamie Deckoff-Jones’ daughter, often mentioned, but never named. I tested XMRV positive early this spring, and decided to start antiretroviral therapy in March. I am on HAART, taking a combination of AZT, raltegravir, and tenofovir. When I started the drugs, I was so seriously ill, that I was willing to participate as a test subject, in the hopes that something, anything would work. I had been forced to drop out of high school at seventeen, after being an honor roll student all throughout. Since then, I had been housebound for three and a half years, and had lost almost all contact with my friends and the real world.

            This was true until a few months ago, when it seemed like the treatment was beginning to work. I was able to spend a few days out with friends, and even go to a concert. I started driving again, and was able to go to my best friend’s 20th birthday party. I enrolled in two classes at Santa Fe Community College, Composition and Rhetoric and College Algebra. I am happy to finally come forward, and report to you all, that I just completed my first week of school, and I am still going strong. I am better than I have been at any time in the last three years, and I believe that the treatment is most likely responsible.

            I have no way of knowing if the improvement will continue or last. I am a true realist when it comes to my illness, and I will simply revel in each good day I am given, and not expect that another will follow. I have been let down too many times in the past, to expect that a remission will last. The way I see it, the glass is neither half empty, nor half full – it’s half a glass of water. But it’s half a glass of water that I haven’t had for three years, and you can imagine how ecstatic I am to finally have some relief. I’m enjoying every moment.

            My English professor’s first assignment was for each of us to write an autobiographical narrative, about some piece of our lives. It seemed foolish for me to write about anything other than illness, since it has been such an influential force in my life. When I sat down to write, I was surprised to find the words spilling from my fingertips, and I ended up writing six pages last night. I realized that the entire story is very long, and very insistent on being told. I thought I would share it with you all, because I can’t think of another audience who will understand better than those of you also living with CFS.

            I’m going to tell it in a series of mini-essays, sound bites each containing a small part of my whole experience. I don’t know how long it will take for me to recount the whole thing, or how often I will post, but I’m determined to tell you all about how I got where I am, and what it is like to finally be feeling a bit better. I hope that some of you will take the time to respond, and tell me about your own stories and experiences with being ill, and with finding health. The series is titled Reentry Phenomena, the term my mom and I created to describe the strange and wonderful experience of finally dipping our feet back into the waters of feeling well. So without further ado, I give you Part One.

Damaged But Not Broken

            When I was a young teen, my mother added a hyperbaric oxygen chamber to her medical clinic, which was located in the lower floor of our house. She was going to offer HBOT to her patients – one hundred percent oxygen breathed under pressure. On the other side of the wall from my bedroom, was a large blue metal chamber that looked a lot like a submarine. It was a last ditch treatment option for patients suffering from incurable conditions – the patients who had already tried everything.

            It was a family business – my mother treated the patients, while my father handled all of the technical equipment – and rather than force me to stay in the private part of the house, my parents allowed me to spend time in the office. After I came home from school, and dumped my book bag onto the floor of my room, I would dash into the office and give a big hug to which ever of my parents’ employees that I saw first. One was Sean, the funny and kind man with the shiny, shaved head that he let me rub for good luck; he also taught me how to shuffle cards and play gin rummy. And then there was Alice, the gentle, big-hearted nurse, who often played frisbee with my brother, my Dad and me, after we wrapped up the workday.

           The patients and their caregivers were also a steady and important part of my life. I was never afraid or made uncomfortable by the illnesses and disabilities that I witnessed. Instead, I formed friendships. Perhaps it was because I was young; what you are exposed to early in life seems normal. There was the kind but tired-eyed mother, who would let me hold her little blind baby who suffered from cerebral palsy. There was the teenage boy, who had been hit by a car while riding his bike and left severely brain-damaged and wheel chair bound. He would give me a big smile every time he saw me, filling my chest with a bittersweet ache. I wished I could hear the words that went along with that smile. I wanted to crawl inside his brain and seam the damage that had been done, so I could break free the boy that was so obviously present, and simply shackled within his own damaged body.

           I would watch them and many others enter the chamber, and put on the clear plastic hoods that delivered the oxygen. It was a complicated, expensive and time-consuming process, but eventually small improvements were evident. The little blind boy reached out and grabbed the string of a balloon, at the celebration of his last treatment. The boy in the wheelchair was able to type a few sentences using a keyboard. They were small improvements, when compared to the grand scale of their disabilities, but they were still meaningful. There was never any guarantee that the treatment would work, or that the improvement would last, but the love the parents had for their children made any benefit worthwhile. Giving up on their children was not and would never be an option.

HAART x 5 1/2 months

I traveled to Reno last weekend. Without a caregiver. Twelve hour day Monday. Fifteen hour day Tuesday. Lots of standing. Walking. Meeting my heroes. Got stuck at the Dallas airport for many hours on Wednesday. Walked miles because they kept moving the gate. Reasonably active days since. No significant crash. Astonishing!

A year ago, I existed from the bed to the couch. When I started HAART, I could be up for short periods, fifteen to thirty minutes at a time. I could go to town now and then, but it was an enormous struggle. I could push it for something important, but it would level me for significant periods of time. My pattern then was a sine wave, roughly five days above water, five days below.

I just functioned for several consecutive days at a level that would have been taxing even before I got sick. With very little payback. I’m still having dips, but they are brief, measured in minutes and hours, not days, and don’t go to helplessness.

My daughter is also doing extremely well, but I’m afraid to jinx it by saying too much:). Suffice it to say, that she proves that I am not the only one. We are both deeply grateful for all of the good wishes we have received.

Reno was a once in a lifetime experience for me. It was my first time away in over five years that didn’t involve seeing doctors for treatment. That alone made it a personal miracle. The WPI has accomplished so much in such a short time. David to the Goliath of ignorance and disbelief we’ve faced for decades living with this diabolical disease. The spirit of interdisciplinary sharing that they are encouraging from inception signals a new era for patients. They are changing the playing field for us completely. Each alone and unrepresented no longer. Uncared for no longer.

Please visit this wonderful coverage of the event and photos of the facility: CFS Patient Advocate blog

At this point, I still do not see a better course of action on the horizon for the sickest X+ patients than the protocol we are following. We are only two patients, but talk to any experienced CFS or Lyme doctor and they will tell you how unlikely a return to function is for patients as far down the road as we were. We are both progressing steadily towards that goal. It seems tangibly within reach as I write this.

Clinical trials are essential. It is an outrage that we are getting better while a staggering number of people languish in isolation without meaningful treatment. Our antiretroviral trial to date is tremendously encouraging and urgently needs formal follow-up.

CFS treatment myths

1. There’s a doctor somewhere that knows what to do.
Nobody knows what to do, but there are lots of dangerous drugs being prescribed nevertheless.
2. There is a biomarker for the disease at this time, other than the presence of XMRV.
If you go to a CFS doctor, you get tested for one set of organisms and markers. If you go to a Lyme doctor, a different set of organisms and markers. If you go to a rheumatologist, you get yet another set of tests. Each will find what they are looking for, including the rheumatologist who didn’t want to find anything; there’ll be something a little off, but not enough to spark real interest. Looking for XMRV is the correct test. It may be the only test worth doing right now, other than testing endocrine function. My understanding is that VIP Dx will offer a serology test in a month.
3. Brain imaging is diagnostically useful.
Unless you are looking for a space occupying lesion or need it for disability purposes, imaging requires administration of a radioactive tracer and gives no useful information. Contrast MRI generally shows scattered white matter T2-weighted hyperintensities and SPECT shows hypoperfusion, generally in the frontal, temporal and parietal areas. So what? What are you going to do about it? It is psychologically damaging to see the images and adds nothing to the treatment of the illness.
4. Tilt table testing is useful.
Most patients with POTS can be diagnosed by doing what I call a mini-tilt. Lie down for 5 minutes. Take radial pulse. Then stand against a wall, using the wall to do the work of the muscles as much as possible. Wait 5 minutes. Retake the pulse. If it goes up more than 30 beats per minute, it’s diagnostic link. Many CFS patients can’t do it, because it’s too uncomfortable. I know of a few people who have been permanently harmed from being allowed to pass out during a real tilt table test.

5. There is a right supplement or bunch of supplements.

As there are blocks in many metabolic pathways, it may be that introducing large amounts of a substance leads to build-up at one point in the pathway, rather than producing the desired downstream effect. When the dust settles from the realization that there has been one or more retroviruses loose in the population for a very long time, it will be clear that the supplement and alternative medicine industries have been fueled by our ignorance. I bet that the average alternative medical practice in this country sees a very high percentage of X+ patients.

6. Oxygen is bad for you.

There is confusion about the use of supplemental oxygen in this patient population. Because there is evidence of increased oxidative stress in CFS patients and hyperoxia increases oxidative stress during administration, some have concluded that it is not a good idea to use it. I was a hyperbaricist in one of my previous medical lives and I will share some information from the hyperbaric literature and how I think it pertains to us, but it is a big topic and I will do it in a separate post.
7. Klonopin is good for you.
Especially in the early stages of the disease, there is often anxiety and sleep disturbance. Benzodiazepines relieve these symptoms. The trend these days is towards longer acting drugs and Klonopin has become the drug of choice in CFS to treat these complaints. It has anticonvulsant activity. The CNS instabilities in CFS are mostly migrainous in nature, not occurring in the electrical domain, though benzodiazepines are sometimes effective for migraines and other manifestations of vascular instability. However, chronic benzodiazepine use has an adverse effect on cognition and destroys sleep architecture over time. Benzodiazepines cause physical dependence and rebound phenomena, and are hard to wean. Let’s look at what the recent literature has to say about the wisdom of using Klonopin for a population of patients afflicted with insomnia, depression and cognitive complaints:
Sleep. 2003 May 1;26(3):313-7. Sleep EEG power spectra, insomnia, and chronic use of benzodiazepines.

World J Biol Psychiatry. 2010 Jun;11 Suppl 1:22-8. Slow-wave sleep deficiency and enhancement: Implications for insomnia and its management.

Aging Ment Health. 2010 Jul 21:1-8. [Epub ahead of print] Benzodiazepine use and quality of sleep in the community-dwelling elderly population.

Arch Bronconeumol. 2010 Jul 22. [Epub ahead of print] Acute Hypercapnic Respiratory Failure in Patients with Sleep Apneas.

Psychiatr Danub. 2010 Mar;22(1):90-3. Side effects of treatment with benzodiazepines.

Arzneimittelforschung. 2010;60(1):1-11. Cognitive effects of GABAergic antiepileptic drugs.

J Head Trauma Rehabil. 2010 Jan-Feb;25(1):61-7. The effect of sleep medications on cognitive recovery from traumatic brain injury.

Int J Geriatr Psychiatry. 2009 May;24(5):500-8. Use of benzodiazepines, depressive symptoms and cognitive function in old age. 

Int J Clin Pract. 2009 Jul;63(7):1085-94. Cognitive toxicity of pharmacotherapeutic agents used in social anxiety disorder.

J Clin Psychopharmacol. 2002 Jun;22(3):285-93. Long-term benzodiazepine use and cognitive decline in the elderly: the Epidemiology of Vascular Aging Study.

Drugs Aging. 1999 Jul;15(1):15-28. Drug-induced cognitive impairment in the elderly.

J Clin Psychiatry. 2004;65 Suppl 5:7-12. Issues in the clinical use of benzodiazepines: potency, withdrawal, and rebound.

Addendum to last post

Since my last post, several people have written to say that I sounded discouraged. I don’t feel discouraged. I feel realistic. It’s too bad that it didn’t turn out to be a fairy tale, but I really didn’t expect it to. We are improved. Relief is relief. For now, I’m thrilled to have a finger in the dyke.

I didn’t report more specifically about responses to treatment other than ours, because the information available to me is spotty and some of it is hearsay. It is really only fair for me to talk about us. But since I did attempt to summarize very generally, I would like to add that when I said that some people on treatment aren’t better, length of time since starting is variable as is the choice of drugs. When I said people hadn’t tolerated the drugs, I was talking about very abortive attempts to get started. Also these people haven’t given up. False starts are to be expected under the circumstances. It was my intention to report only in the most general terms, in an attempt to give an impression of what it is like to get started. It’s ridiculous that we all have to try to figure it out this way. We need a real clinical study!

So I’m not discouraged. I’m angry. My disappointment in my colleagues is profound, with pathetically few exceptions. People write to me asking if they should go to this one or that one, try this protocol or that. To the doctors I say: It’s the virus stupid. You’re not going to stop a retrovirus with the wrong antivirals, ever more sophisticated combinations of antibiotics or any amount of supplements. I understand the reasons why it became this way, but I don’t understand any longer.

We’ve been given the answer and almost nobody is running with it. Why are these doctors still telling their patients that it’s better for them to adhere to the same old half-baked ideas that haven’t worked than try specific treatment for what they have? Better to keep their captive audience. If these drugs work, patients will be able to be treated through normal channels. They won’t have to travel and spend ridiculous amounts of money on uncovered treatments that are often worthless or dangerous. I’ve never seen a group of people so invested in their own ideas as the doctors caring for these patients. It’s like they’ve been in the dark so long, they can’t stand the light.

Why has mainstream medicine abandoned us? It’s because of doctor discomfort with not knowing what to do with a patient that doesn’t fit. Easier to blame the patient. Also the disease makes the patients “crazy”, but still smart enough to read, thus knowing more than the doctors. All worsened by the insurance companies practicing medicine, the loss of the doctor-patient relationship which is essential to the treatment of chronic illness and, of course, the government not doing its job to inform the doctors of what they should have known long ago.

To my colleagues: You are sleeping with the enemy. Here’s your chance to be a hero. There are still people out there who believe that HIV doesn’t cause AIDS. What are you planning to do? Wait for the government to tell you the obvious? Wait for the insurance companies to tell you it’s a good idea to treat? Some of us will be dead by then. Get a clue and help your patients!