Snyderman/Mikovits Poster Presentation

This presentation, of great historical importance, from the 1st International Workshop on XMRV, is posted with permission:

XMRV:  Virological, immunological and clinical correlations in patients with Chronic Lymphocytic Leukemia and Mantle Cell Lymphoma
M. Snyderman, I. Sylvester-Brao, D. Goetz, K. Hagen, V.C. Lombardi, D.L. Peterson, P.H. Levine, F.W. Ruscetti, J.A. Mikovits

Link to Powerpoint Presentation
Link to presentation as a pdf


A few people have written to me that a rumor is circulating on the internet- apparently a doctor reported to a patient that two patients have died on AIDS drugs. I first heard this rumor a couple of months ago from a patient in Europe who heard it from a doctor there. Both of these doctors attended the same events in Reno last month, so I presume they communicated about this and are talking about the same two patients. In the reports that I heard, there was no other meaningful information given. It seems to me, that under the circumstances, it is incumbent upon the reporters to provide specific details of the cases. Since patients are making pivotal decisions based on very little scientific information, it is not responsible to attempt to influence by rumor and innuendo. Complete clinical information is essential to make use of the risks that others have already taken. I have never seen an example where transparency from the practicing physicians was more needed.

If any X+ patients taking AZT, tenofovir and/or raltegravir have died, nobody wants to know about it more than I do. I invite, no beg, the doctors spreading this rumor on both sides of the Atlantic to share the pertinent details. The patients who are in the process of making a decision about whether or not to pursue treatment now, need to factor in all relevant information; they should have any available data. Without the kind of detail I’ve been providing, any statement about AIDS drugs killing people is meaningless fear mongering. And if it is true that the spectrum of response to antiretrovirals runs all the way from near recovery to death, well then, clinical trials and a full-court press from the scientific community are even more urgent than I thought. It seems highly unlikely, however, that anyone has died as a result of the three drugs in question. These drugs simply don’t have adverse effects that would be fatal. They are not new drugs and the adverse effects are very well understood.

This seems a very good time to say again what I have said all along. I am not advising anyone to make the same decisions that I have, but I do think that everyone should have that right. Waiting to participate in a clinical trial is reasonable for many, but for those who feel they can’t wait, or won’t wait, there’s nothing magical about a clinical trial. They give you the drugs and see what happens.

We have a little more information now than when I started antiretrovirals. It seems to be more difficult for many to get on the drugs than I expected from our experience. Also response to treatment is more variable and slower than I would have anticipated. All of this needs to be factored in with each individual’s particulars in partnership with a knowledgeable, or at least interested physician who is willing to learn.

There is a small, but growing coalition of doctors committed to helping now and in the future- committed to keeping up with a shifting landscape. The unmet need is too great to stick to business as usual. Many physicians have become inured to the suffering. I think that will break down as the science penetrates the medical culture and new physicians become interested. I encourage any doctor reading who wants to help to get in touch. Participate in this journey of discovery. Patients all over the country are looking for physicians willing to work with them. I am happy to serve as a connection point.

Why now, all of a sudden, is everyone so worried about CFS patients taking drugs that may not help? How ridiculously paternalistic! Apparently some of our doctors think that we aren’t smart enough to assess all of the available information. What’s our problem anyway? Why not let them decide for us? Haven’t the authorities done a great job figuring it out for us up until now? At this point in time, it’s clearly the patients who are most able to connect the dots.

Reentry Phenomena: Part 4

by Ali Deckoff-Jones

      During the past two weeks, a question has been running through my mind – What if the drugs don’t keep working? Before anyone worries, I want to clarify that I am doing well. I just finished my fifth week of school. There are eleven more to go in the semester, and I expect that I will be able to finish. But even though I’m doing so well, it’s not easy. There are still times when the full weight of the fatigue hits and me, and forces me to collapse. The difference is that now those spells last for a few hours, instead of a few weeks.

      Still, despite all of my progress, there are times where I feel sick enough to ask myself, what will happen if this particular HAART cocktail doesn’t cut it? Perhaps the drugs will only work partially, and then the improvement will plateau, my health better than before, but still a mile from where I want it to be. Or maybe a relapse is just around the corner. What if these drugs can’t keep my illness at bay? Is it wrong for me to report on my experiences, when I could be offering people false hope?

      My hope for the future is based on the progress in the science, not the current meds that I’m on. If the science of XMRV and associated retroviruses continues to move forward then eventually disease-specific drugs will follow. My current treatment is an attempt at creating a holding pattern, “a finger in the dike” as my mom puts it. Hopefully it will grant me some form of a real life, until better meds are available.

      Till then I will report on my experience, in the hope that it helps to keep a light shining on the real issue. CFS patients keep silent, for the simple reason that they are too ill to speak up. The disease literally steals away our voices. It takes away our ability to fight for our rights. The discovery of XMRV was just the beginning. Now is the time when CFS patients need to stand up and fight, so that the necessary follow up studies and clinical trials happen. CFS stole away my voice for over three years. Now that I finally have it back, I will not keep quiet. I have been gifted with some semblance of energy, and I believe it is my responsibility to speak up, where so many others cannot.

Cowboy Up

      In our haste to flee from Lyme Land, we had only a few months to choose a new home. My mom picked the southwest because of its low tick population. We needed to find a town with good schools, and our search led us to Sedona Arizona and a small boarding school called Verde Valley nestled at the base of majestic Cathedral Rock.

      I started tenth grade living on campus, but my family was living in a rental house only a few minutes away. It offered me the best of both worlds; I had the same independence as the other students on campus, but my parents were close by if I needed them. Even though I felt well, I knew that I could relapse at any time, and it wasn’t safe for me to live too far from home.

      I spent my first semester making new friends from all over the world, since Verde Valley has an international student body. Down the hall from my room lived a girl from Germany, a girl from Russia, and a girl from Mexico. During the day I was engaged in classes, and in the afternoon I spent hours horseback riding through the valley.

      It was one of the best years of my life, but it was short lived. By March I started feeling a familiar fatigue creep into my muscles. Someone who has not experienced Chronic Fatigue Syndrome cannot possibly understand the full extent of its power. Normal tiredness comes and goes, and it allows you to push through its haze and still accomplish something. True fatigue is all encompassing, unrelenting and impossible to defeat. Every cell in my body ached with a lack of energy so profound that just dragging myself to the bathroom, or feeding myself felt akin to running a mile. On top of the fatigue was the pain, an insidious ache that built, until I was curled up in bed in the fetal position, just trying to focus on my next breath, waiting to be released from its hold.

      I told my family that I knew I wouldn’t be able to finish the school year feeling like this. I was heading downhill fast. So my parents came on campus for a meeting with the Dean of Students. As always he was dressed in his typical cowboy attire – button down shirt, tucked into work jeans, and cowboy boots. My parents and I explained my medical problems to him, and asked for help in creating some sort of plan, so I could finish the tenth grade. What followed was one of the worst experiences of my life, one familiar to many CFS patients.

     The Dean doubted my assertion that I would not be able to complete the school year on campus. He believed that my symptoms couldn’t possibly be so bad. After watching me succeed all year, he couldn’t understand what was taking place inside my body. Afterall, I didn’t look sick. He told me that I needed to “cowboy up” and just get it done. My heart broke under the weight of his disbelief and judgment. I fled his office in tears. I learned later that after I left, the Dean told my parents that I needed a psychiatrist.

      For years, I remembered that man with burning hatred and disgust. Not because of what he did to me, but because of what he represented in my own mind. He was the embodiment of all my own self-judgment, and self-doubt. Because he was questioning the veracity of my illness, I found myself doing the same. Maybe I wasn’t sick at all, maybe I was just crazy. I knew in my heart it wasn’t true, but I still doubted, judged and even hated myself.

     I have often said that the worst part of CFS isn’t the symptoms but the result of them – the isolation, the lack of understanding, and the lack of compassion. Doctors, friends, and even family members question and disbelieve the severity of our illnesses.

     People say that chronic fatigue sufferers are just lazy. Malingerers. ‘If they really wanted to go to work or to school, then they could push themselves to do it,’ they say, while exclaiming that they feel tired on a regular basis, but still manage to go to work every day.

     After experiencing true fatigue as often as I have, I dare anybody to spend a day in my body, in the vice-like grip of my symptoms at their worst. After that, they can call me lazy.


Definition of Opinion from the Merriam Webster dictionary:
1. a view, judgment, or appraisal formed in the mind about a particular matter 
2. belief stronger than impression and less strong than positive knowledge 
3. a formal expression of judgment or advice by an expert

Everything I am writing is my opinion only. Someone commented anonymously on my last post that it is irresponsible of me to post my clinical impressions. I am contemplating that deeply.

The most well known physicians caring for patients with CFS and chronic Lyme Disease don’t hesitate to put their clinical impressions out there publicly. Desperate patients who can’t afford their services try to make sense of their diseases from what they’ve read on the internet. I am not currently in practice, but I have perspective. Many perspectives. Most of the people reading and writing to me, clearly understand that I cannot give them personal medical advice. I am reporting on our experience, but part of my experience is a large volume of email from patients who share their histories. It has become an incredible learning tool for me. In addition, I am in touch with most of the physicians in the country who have prescribed antiretrovirals for XMRV+ patients. And I have 25 years of clinical experience under my belt, in both conventional and alternative medicine.

The reality is that I disagree with almost everything with respect to the current ‘approach to treatment’ of CFS/chronic Lyme. Yes, there is a ‘mitochondrial defect’, diastolic dysfunction and many other dysfunctions too. Much has been made of the cardiac abnormalities observed on echocardiagram in CFS patients. Personally, I’d rather see the attention paid to brain function. But the reality is that any organ that you study carefully will likely show the disease. It is a multi-system illness. My cardiac abnormalities were picked up by a careful cardiologist in 1996. They have not progressed. Some of the abnormalities noted then are better now. In fact, I was athletic with diastolic dysfunction for almost a decade. Some CFS patients have been told that they have heart failure, but it is clear that the cardiac dysfunction that is being noted on careful echo does not progress the way that classic CHF or PH does. Those patients are generally dead in a very few years.

The best way to treat the metabolic and functional abnormalities that are caused by the virus is to shut down the virus. It’s true in HIV disease. It’s common sense. We may or may not be able to do it with available drugs. Time will tell. We know that the drugs move the disease. They really don’t do much but interfere with retroviral replication, other than AZT (inconsequential macrocytosis and a few long-term side effects that take years to develop and may or may not be worth it, depending upon new drug development). The drugs can have some adverse effects on the kidney and liver that are easily monitored. It would be wonderful if tenofovir and raltegravir alone do it. For the moment, we know that HAART for HIV relies on synergies between three or four drugs.

I would like to remind everyone that many were saved from horrible AIDS deaths by AZT before there were viral load measures available. And they got the dose wrong for a while. That may happen this time too. There were courageous doctors on the frontier then also, before the science had given them the answers. A very few of them are on board for the coming struggle. Many, many more are needed.

My clinical intuition and personal experience getting on the drugs tell me that this group of patients would have an easier time of it starting out on a low dose and going up slowly, possibly something like a quarter tab of one drug, going up a quarter tab a week, until all three drugs are on board. The inflammatory flare can’t be a good thing. The problem with this strategy is the possibility of encouraging resistance to the drugs. Until we know more about how stable the virus is, we are completely in the dark about this. It may be that it doesn’t take HIV doses to suppress X/P. But the Singh paper showed that X is slightly less inhibited than HIV at the same drug concentrations in vitro. So for now, until we have viral load measures, it seems prudent to stick to established HIV doses.

I am speculating along with all of you as to what it means that lots of infected people are clinically healthy. There are many possibilities. It may take more than one virus to get sick. It may take a very, very long time for some people to get sick. It may require a genetic predisposition to get sick. It may take the presence of virus and a particular injury or trigger. There are likely genetic restriction factors involved in staying well.

It seems to me that it would be irresponsible of me not to report, so that patients who are choosing to try antiretrovirals on their own know what to expect, at least know what I know. There is so little information available and without viral load measures, it’s all guess work. For now, we must rely on clinical intuition. That’s what a good doctor does everyday anyway.

If my luck holds out, I will have my own patients soon. If my last Lyme doctor is reading, I wish he would comment on what he thought my chances were a year ago of my returning to work.

My intention is to continue to report my experience and opinions. My assumption is that everyone reading knows I could be wrong about anything. It’s all just my best guess.


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.

My written testimony to the CFSAC

Testimony of Jamie Deckoff-Jones MD
September 17, 2010

To whom it may concern:

I am a 56 year old emergency physician. I have been diagnosed with CFS, chronic Lyme Disease and atypical MS. My 20 year old daughter has been diagnosed with CFS and chronic Lyme Disease. I have been ill for 16 years and disabled for 6. My daughter has been ill for 7 years and disabled for 4. In the last few years, I have almost died twice and my daughter has been hospitalized for cerebral vasculitis. My husband has been ill for 7 years and is functional. My 15 year old son is clinically healthy.

In October of last year, I read the Mikovits paper in Science. It was immediately apparent to me that our illness was of retroviral origin. In February, my daughter and I tested positive for XMRV by culture. We were both almost housebound at that time. With the help of a compassionate family doctor and the guidance of an experienced AIDS doctor, we started the three antiretroviral drugs that tested in vitro against XMRV in the Singh study. Six months later, my daughter has started community college and I am planning a return to part-time practice. As always with clinical medicine, there are confounders, but I do not think it possible that we have not been helped by antiretroviral therapy.

Because the patients have no help, I started a blog to share our experiences with treatment and my clinical ideas. The response has been enormous. My email is filled with stories of unbelievable pain, neglect and abuse. The wasted lives and wasted talent are a national disaster. Instead of contributing, a staggering number of people are unable or almost unable to care for themselves.

Since CFS patients don’t die from their disease for a very long time, there is a tendency to feel that there is no hurry. Good science takes time after all. But it is a progressive disease. There are a staggering number of patients who are too sick to wait. They need compassionate care. They’ve been denied basic care, even common decency, for decades. It’s been a year since the association between XMRV and CFS was elucidated. Scientists say causation has not yet been demonstrated. I say it should be a clinical assumption at this point. As a physician, it’s obvious from the stories and family histories of the patients contacting me. Where have the epidemiologists been all this time? I am an emergency doctor and this is an emergency!

To me, it’s a miracle that existing safe drugs may be effective. It is a travesty that clinical trials have not yet begun. It brings shame on the medical profession that doctors are unable to connect the dots. If there was a hurricane or an earthquake, everybody would be rushing to help. Even if all resources are immediately mobilized, many will be lost. The patients have very advanced disease. It is beyond a disaster.

New babies are being born with it every day. Is it possible that AZT in pregnancy will prevent it, as it does HIV? Why is nobody trying to find out?

The WPI has single-handedly made things happen for patients. Why are they not funded? They are a tiny non-profit. They have handed the world the answer on a silver platter. Is our government ever going to step up to the plate?

Jamie Deckoff-Jones MD
Santa Fe, NM

More random thoughts

Lots of people are speculating as to why we might be better, other than HAART, including me of course. Maybe it’s our genetics. Maybe Lyme treatment worked:). Maybe quitting Lyme and other palliative treatments worked. Maybe we’re taking something else that did it.

All the drugs cause an intensification reaction in most patients. It generally subsides in weeks, but is persisting in a few patients. Except for us and a 16 year old that hasn’t been ill for long whose mother reported on this blog, results are so far not as encouraging as hoped. The most obvious difference between us and the others is that we have been on all three drugs for a few months. Also Deplin may be a factor for us, as discussed later in this post. Actos has helped Ali and may have made it easier to get on the drugs, which haven’t bothered her at all, clearly an exception to the rule. I had a hard time getting on them, but was very motivated. It wasn’t worse in any way than where I’ve been before, but it required a willingness to suffer.

AZT seems to be the easiest to start, but may have the least clinical effect. 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. It is the broadest spectrum drug we have; it inhibits transcription of HIV, HTLV, FeLV, MLV’s and XMRV. It also has the best CNS penetration of the three available drugs. There are some potential long-term consequences of taking it that hopefully we will be able to avoid when new, specific drugs are developed. This happened with HIV disease, in which AZT is generally not needed anymore for effective treatment, at least in the developed world.

The inflammatory flare that follows starting the drugs may have to do with an increase in unintegrated viral DNA exacerbating the existing pathological response. It is an intensification of existing symptoms. I will resist the impulse to call it a ‘herx’. We don’t have a handle on the pathogenesis of X related disease yet, so we can’t know what the drugs are doing specifically with respect to this virus. With HIV, patients stay healthy until the virus activates, then die pretty quickly if not treated. X smolders without killing. Many of us are very far down the road and it isn’t surprising to me that the established pathological processes don’t just turn themselves off, since provirus is present in existing cells and probably still doing damage. Recovery likely depends upon the formation of new, uninfected cells, so it is a slow process.

The biggest reason I can think of not to try these drugs now is the potentially serious consequence of exposing drug naive virus to a regimen that doesn’t really do it. It’s possible that it will be better in the long run to wait. It’s a very personal decision that has to do with quality of life now and ability to temporize, or not. It should be made in consultation with a knowledgeable physician. But as things are, many patients are unable to find help and a few are trying antiretrovirals without supervision. This is of great concern, given that the drugs are not easy to take and need to be managed. There is so little information to go on that anyone who chooses to go ahead now must know that they are taking a big chance. Each person’s assessment of risk to potential benefit is going to be different. The risk of doing nothing needs to be carefully evaluated in light of the information available, as our understanding of what’s going on medically is changing all the time right now. Unfortunately, clinical medicine is all we have. It doesn’t look like science is going to save us for a while. Also I think one should probably not start antiretrovirals without a willingness to take them forever.

Although it goes a bit against the grain to post this information publicly, some have asked and my intention is to inform about what seems relevant. So, in addition to HAART, here are our current daily meds, once a day unless otherwise noted.

Cozaar 100mg
     switched from Benicar 6 months ago; have been taking an ARB for 15
Norvasc 5mg prn severe hypertension
Deplin 7.5mg x 6 months
Low dose aspirin x 6 months
Armour thyroid 30mg for years
High dose cyclical topical estradiol and estriol
    since menopause two years ago
High dose topical testosterone
     have been taking testosterone since ’97
Prometrium 200-400mg (since ’97)
Topical selegilene .5mg x 8 months
Topical D3 10,000 units x 6 months
     had to slowly increase dose; didn’t tolerate previously due to
     increased pain
Meriva SR (curcumin extract) 2 capsules BID, added recently

Actos 7.5mg BID x 6 months
Fortamet 500mg BID x 4 months
Cortef 5mg for years
Deplin 15mg x 1 year
Topical progesterone 200mg 12 days per month during luteal phase
Topical D3 10,000 units x 6 months
Meriva SR 2 capsules BID, added recently

There are also many things we are not taking anymore, including antibiotics, Klonopin, pain medicine, anticonvulsants, psychoactive drugs and truckloads of supplements.

Ali has PCOS, as do more than a few second generation women in my ‘clinic without walls’. PCOS is a very common, though under-diagnosed syndrome characterized by LH and insulin insensitivity. The LH insensitivity interferes with normal ovulation and there is impaired formation of the corpus luteum cyst and therefore, inadequate progesterone. PMS in this group looks like an exacerbation of the illness. Atypical reactive hypoglycemia is seen in male patients as well, as are hormone deficiencies.

Actos has been quality of life changing for Ali. The treatment for PCOS is usually metformin, sometimes with Actos. Treatment encourages normal ovulation. In addition to the luteal phase defect, PCOS is associated with insulin insensitivity. Ali became so sugar sensitive that she didn’t tolerate any carbs at all. Two physician friends suggested Actos at the same moment for her, for completely different reasons, so the lightbulb went on for me. Actos (a TZD or thiazolidinedione, like Avandia) works by binding to PPARγ which are receptors on the membrane of the cell nucleus. TZDs enter the cell, bind to the nuclear receptors, and affect the expression of DNA. Activating PPARγ decreases insulin resistance, inhibits VEGF (vascular permeability factor), dropping levels of certain cytokines. Here are links to a few Medscape articles and pertinent papers:
Medscape: Insulin–sensitising drugs for Polycystic Ovary Syndrome
Medscape: Antidiabetic Agents for Treatment of PCOS
Medscape: Pharmacologic Treatment of Polycystic Ovary Syndrome
Treat Endocrinol. 2006;5(3):171-87.
PPAR Res. 2006; 2006: 73986. 
J Endocrinol Invest. 2005 Dec;28(11):1003-8.
Reprod Toxicol. 2007; 23(3): 438–448.

As for the fear of exposing the virus to a hormone activator with physiologic progesterone, testosterone or hydrocortisone replacement, nothing new is being added. My gut says it is safer to cover young women for progesterone deficiency to prevent an estrogen dominant state, especially given the concern with respect to X and oncogenesis, but we cannot know at this time. All the steroid hormones, including sex hormones, cortisol and the mineralocorticoids are metabolized via common pathways link; note that progesterone is metabolized to androgens and aldosterone, and that there are bidirectional pathways. Replacement tries only to tip the ratios. It’s nothing like taking birth control pills, which is how the gynecologists treat PCOS. Birth control pills are synthetic estrogen and progesterone-like drugs (that may or may not activate virus, time will tell). With bioidentical hormones (same molecular structure as the hormones the body makes on it’s own), you are not taking over the cycle, but supporting it, normalizing it. You’re not exposing the virus to anything that isn’t there anyway. A menstruating woman’s body makes some progesterone, but women with PCOS don’t make enough. Unless you want to take out ovaries, the virus is going to see some progesterone. They use ablation for hormone dependent cancers, but it’s extremely destructive to quality of life. So, for the record, Ali and I have both improved despite taking hormones, in my case full bioidentical HRT, including testosterone.

Endocrinologists as a group seem to be particularly clueless with respect to managing CFS/Lyme patients, even though hormone depletion is probably pretty universal. Because the ‘bioidentical’ hormones are naturally occurring substances, they can’t be patented. Therefore they have not been studied and doctors generally don’t know how to use them.

Deplin is L-methylfolate, a medical food, the only active form of folate that crosses the blood brain barrier. It is a regulator of synthesis of monoamines (serotonin, norepinephrine and dopamine). In the face of deficiency, it is useful for depression. Ali added it to potentiate Cymbalta about a year ago, and it allowed her to wean from the drug. I tried Deplin because it had such a profound effect for Ali. I didn’t notice anything going on it, but have tried to stop it a few times and had difficulty with irritability and sleep disruption, so continue to take it. Because sufficient levels of all B-complex vitamins is important, B12 supplementation (sublingual or parenteral) is worth considering with Deplin, hydroxocobalamin probably being the preferred form.

People have questioned me as to whether Ali and I really have CFS. We meet the Canadian criteria for CFS, but not the ridiculously inadequate CDC case definition. In my experience, most chronic Lyme patients meet Canadian criteria for the disease. My early symptoms, in hindsight, were related to sensory and cranial nerve dysfunction, and vasospasm – classic, atypical and intestinal migraines, hypertensive crises, sensory disturbances. We are both hyper, not hypo, immune. Ali has had vasculitis. I was diagnosed with Crohn’s on surgical path. I am more of an atypical MS picture (radiculopathies, +Rhomberg, +Babinski). Ali is more classic CFS with POTS being a big part of her symptom complex. My orthostatic intolerance is superimposed on hypertension, so I don’t get tachycardic unless I’m over-medicated and hypotensive, but gravity is still an obstacle for me for more obscure reasons. Neither of us is particularly MCS or drug intolerant.

Ali has persistent IgM specific bands for Borrelia burgdorferi. I have fleeting IgG specific bands. We both had positive FISH test for Babesia microti. We both had postive PCR’s for Mycoplasma fermentans and high IgG titers for Bartonella henselae. I had high titers for Bartonella quintana.

One of my few positive tests, besides the usual TBD suspects, is a low positive nucleolar ANA and very high circulating immune complexes. Also very low alpha MSH and mildly elevated VEGF. I have never been tested for HHV-6, etc. I tend to run a borderline high white count with normal differential and I have slightly low globulins. Ali has elevated IgG titers for EBV, but hasn’t been extensively tested for other activated viruses. She has had a low IgG subunit.

As for the genetic component, Dr. Shoemaker says we have HLA profiles that put us at risk. I am an Ashkenazi Jew, a group which has a variety of genetic diseases, including Familial Dysautonomia. I am probably an Ehlers-Danlos variant, becoming more flexible with age and exacerbations of illness. My husband has Marfan’s Syndrome. My husband and Ali are positive for the V Leiden gene. So a genetic hodgepodge.

Historically, Ali and I go up and down together, but I think that has to do with stress and cortisol activation. Our triggers have been hormonal shifts (puberty and childbirth), sustained stress and a concussion once for me. That fits with X having glucocorticoid and androgen receptor elements. 

I have attempted to monitor therapy by following our TGF beta-1’s, which were severely elevated for both of us at baseline, and C4a’s, which were normal. It may still prove interesting, but doesn’t seem useful as a guide to clinical decision making. It looks like the numbers reflect the inflammatory flare and possibly slow resolution, but it is still too soon to tell. So far, it seems the numbers do not reflect our clinical improvement.

All I really know for sure is that we are X+, we’ve been on antiretroviral treatment since March, on three drugs since May and we are a lot better. Lyme Disease was a big piece for Ali, probably not for me. We’ve each gone up at least 30 KPS points since starting HAART. I don’t think it’s possible that antiretrovirals haven’t helped us. Nothing else we’ve tried in the last few years has worked, except for Deplin and Ali’s Actos, and I think we can all agree that we were unlikely to get this kind of improvement from those interventions. But it is possible that the other things we are taking are potentiating the effects of the drugs or ameliorating the side effects of treatment. Neither of us feels completely well, especially me. But we are both hugely more functional. We can only hope it continues.

P.S. Ali wants me to disclose the things about her in this post, because she thinks they are so important.

Reentry Phenomena: Part 3

By Ali Deckoff-Jones

      Wednesday evening my mom picked me up from class, and as I drove us home, we got into a fight. It is rare for us to argue. Considering how much time we spent together, when we were both housebound, perhaps it is a miracle that we get along at all. It certainly is not normal for a teenage girl’s closest, and often only companion to be her mother. But I never felt smothered by her presence; instead I was grateful that I had her by my side. Those years together developed our bond into a true friendship. She is the only person who understands how real my illness is, and without her, I would certainly have been swept down the river of disbelief, judgment and isolation that so many CFS patients drown in.
      On this evening, I was fully aware that the fight was my fault. I was starting an argument, because I was irritable and ready to jump out of my skin. I hadn’t slept well the night before, and I’d been up since the early morning. I ran around town all morning doing errands and going grocery shopping, and then I’d had a full afternoon of classes. By the time I got into the car, my head was pounding with pressure – it felt like my brain was swelling up inside my skull.

      My mom did some little thing to irritate me, and it set me off into raging bitch mode. I knew I was being unreasonable, but I had reached a level of stress where I couldn’t control myself. It’s a symptom that I used to have often on my sickest days, but this was the first time I had felt it in a while.

      The fight continued at home, where my mother and father told me that I needed to get my stress under control, and not take it out on other people, while I tried to defend myself. I knew that they were right, but after such a hard day, I reacted to the judgment by breaking down into tears, crying my heart out for the first time in months. I poured out all of my thoughts and emotions to my mom, in one massive stream of consciousness.

      I told her about how hard these last few weeks have been. About how scary it is trying to reenter real life, after being absent for so long. About how lonely I am, and how I miss having real friends, and how daunting it feels, needing to make all new ones. About how angry I am for everything that I have lost. Everything that was stolen from me. Angry at the politicians. Angry at the scientists. Angry at the doctors. How sometimes I am so angry, I want revenge. For myself, and for all of the other patients, who have been ignored for so long.

      I cried, letting myself really feel the grief, and the anger, and the fear. I sat with all of the emotion for a short while, and when the last exclamation of loss left my mouth, I let it all go. I focused in on the new lightness in my chest. Such a relief. The pain was still there, but now that it had received some attention, it was soothed like a baby being put to sleep.

      Like so many CFS patients, I have been forced to live with pain. Often, the only way to do that is to ignore it. If I wallow in it all the time, it eats me up, until it consumes me entirely. So instead, I focus in on the few tiny comforts that I can find for myself.

      But when I ignore the pain for too long, I become used to the suffering, and I forget that it isn’t normal. Just because I have to live this way every day, doesn’t make it okay. I have lost immeasurably. I have been wronged. Sometimes it is okay to let myself feel that. Let myself feel all of the pain created by my illness. Let myself cry for everything that I have suffered. Let myself feel all of the loss, and then take a deep breath, and let it all go.

      This is how I can move forward, despite everything I have been through. When I express my grief, it creates room for other emotions to come forward. Like hope. Hope for a better future not just for myself, but for all of us. I believe that real treatment is not just possible, but inevitable. I hope that eventually all CFS patients will be able to retrieve their lives. I believe that even though it is hard to recover after so much has been lost, it is still possible.

The Gates of Lyme Land

      When I was twelve, I took a few courses at Simon’s Rock College, a small early college in our idyllic Berkshires town. My ongoing biology project was to trek into the woods, where I had to observe and document the continuous changes on a designated plot of land. My plot was thick with brush and trees, and fall leaves blanketed the ground. The spot was so picturesque and pristine; I didn’t realize it was also perfect tick habitat.

      As the school year came to an end, I began to complain of tiredness, shortness of breath, and an achy feeling all over. At the same time, it became clear that my parents were having health problems of their own. My mother was unable to complete a full workday, and my father was experiencing his first attacks of serious dysautonomia and arrhythmias.

      My mother recognized that my symptoms resembled those of her chronic Lyme patients. She sought out the best chronic Lyme doctors – often termed ‘Lyme Literate Doctor’s or LLMDs – and got appointments for the whole family. Thus began our journey into ‘Lyme Land’ and the world of ambiguous diagnostic testing and ongoing courses of antibiotic therapy. All in the hopes of beating back a bacterial infection that most doctors would not believe we had, since the CDC and IDSA deny the existence of the chronic form of the disease.

      But my doctor, the top pediatric LLMD in the world, firmly believed chronic Lyme caused my symptoms, and it was easy to believe him, considering I had already had the illness once for certain, and the woods around our house were tick paradise. I remember taking a hike with my dad, and later picking five ticks off of my clothing. One night in our kitchen, I stepped on a swollen dog tick that exploded oozing blood all over the bottom of my foot. Sometimes patients came in with ticks that they found on themselves, in little glass jars – often they were nymph deer ticks, the baby form, as small as the head of a pin. If you needed a magnifying glass to see one, how would you notice if it got on you?

      My doctor gave me a prescription for oral Biaxin, and the antibiotics came to my rescue once again. Within a few weeks of starting the three-month regimen I was back to my normal, healthy self, and ready to start ninth grade in the fall. But it didn’t last. After a full and happy year of school, including two major school theater productions, I relapsed again at the very end of the year. Even though I only had my final exams left to take, I was simply too ill to finish.

      My school was very helpful with accommodating me, allowing me to forego my final exams, since I had produced good work throughout the year. But this was little comfort, as I examined the hard truth that the treatment had failed to cure me completely. I began taking antibiotics again. First, the drugs had gifted me with two healthy years. Then they had allowed me one. If the antibiotics worked again, how much good time would I be able to scavenge, before I was forced back into suffering?

      The green of the woods, once so lush and inviting, now seemed haunted by invisible foes. I stayed inside, watching the forest I had once loved to explore, longing for the days when we had all been blissfully ignorant about Lyme Disease.

      My mother realized that there was no way to protect us from reinfection. It wasn’t safe for us to stay here in Ground Zero of Lyme Land. My little brother, at least, was still healthy. We could not sit around and wait for him to get sick too. So we said goodbye to our house, to our school, to my mother’s clinic, and to our friends. We packed up and moved to Sedona, Arizona, just in time for the new school year. My antibiotics were working again, and I was ready to start over.

      I was happy to exchange forest for red rocks, and ticks for scorpions. Maybe a new place would break my pattern of relapses. Maybe the antibiotics would work for real this time. Maybe now I would stay well. But these affirmations were becoming less and less comforting. Masked behind my hope, lurked the ever present fear that my good time was limited.

6 months

Still going uphill. Ali has surpassed me physically, to my great joy. There are moments when we both find it hard to contain the new found energy. We are also each having our own difficulties reintegrating into life again. There has been so much lost; in moments it is very hard to come to terms with where we are now, rather than dwelling on what might have been. But I can tell you with certainty that all of these lazy, crazy, faking patients will get up at the first possible moment with a burning desire to do something, anything that has a positive effect on the world. Nobody wants to be a burden. I can remember a time, not so long ago, when I thought that my husband would be better off if I died. It is going to be breathtaking to behold so many chronically ill people recover, whether it’s now with these three drugs, which I think is likely to be the case for at least some patients, or a little later, when the drug companies finally get to work on it.

The disease is a relapsing, remitting process on it’s own. Many people who get sick for the first time, get well within a year or two. However, it is rare for patients who have been sick for several years unremittingly, to get better enough to return to nearly full function. We are both now over 80 KPS points; we were at about 40 points when we quit Lyme treatment a year ago and at about 50 points when we started HAART 6 months ago. (Karnofsky performance status). It is unlikely that we are some kind of rare exceptions. We are the only patients I know of so far on three drugs for any length of time (since May). There are a few who have been taking one or two drugs for several months who are somewhat better or not better. There is a single case report on this blog of a teenager who is much better on two drugs (comments in HAART post of Aug 22). I encourage anyone else trying antiretrovirals to get in touch with me or share here.

I read things suggesting that we are the tip of the iceberg, but as far as I can tell, we are only a small handful of people. Only a very few doctors brave and compassionate enough to help. There’s an attitude that these patients don’t die, so what’s the hurry? It took fifteen years with HIV, so everyone should be patient now. But since something has been learned in the last twenty-five years, it seems to me that this time, all that experience could be brought to bear to speed up the process a bit.

I just watched a YouTube video of Dr. John Coffin at the XMRV conference yesterday, expressing his opinions about off-label use of antiretrovirals. The only thing that he said of importance was that the disease remits on it’s own, but that only makes clinical trials all the more pressing, so that we don’t rely on anecdotes. Now! Not in a couple of years when the scientists say that they have proven causation. The patients are so willing to be part of the experiment, trapped in purgatory. But the scientists are worried. Don’t mean to single out Dr. Coffin; he’s in good company. But what a bunch of fuddy duddies, practicing medicine without licenses. And their basis for opinion is what? Wish they could all spend a few hours in a CFS body. Bet they’d take a few pills and see what happens. Spend a day living with the agony of a child you can’t help, can’t comfort. It’s intolerable. So many people. While these scientists pontificate. It’s an emergency!

It’s amazing to me how respectful the patients are as a whole. There is a certain wisdom and acceptance of reality not seen in most patient groups. Nobody expects a thing. It’s been too long. We’ve become too patient. No one knows better than I do the meaning of the word can’t. It will be incumbent on those of us who recover some measure of function to fight for the others.

Tonight is the WPI fundraiser. Please donate whatever you can.

Reentry Phenomena: Part 2

By Ali Deckoff-Jones

        As soon as a little bit of energy reenters my body, I tend to get carried away. I should be making sure I don’t overdo it, because if I push too hard, I’m asking for another relapse. But it’s so hard to slow down, when doing things no longer makes me sick.

       I can spend today on my feet, and not crash tomorrow. I’ve been leaving the house almost every day, driving, running errands. I’ve been cooking dinner for my family most nights. My classes already seem too easy, and I can’t help but crave more of a challenge. And I’ve been writing, something I used to be able to do only in the few moments I would get, when I wasn’t drowning in fatigue.

        Miracle of miracles, I’ve even been exercising a little bit. I can take short walks, and do some light muscle training. A few months ago I couldn’t touch my toes, now I can almost rest my palms on the ground. Being able to do anything physical at all without horrendous pay back is such a gift. I have this vision of myself in the future going on a run and not dying afterward.

        I had a conversation with my mom a few days ago, about St. John’s College, a small private college in my town that focuses heavily on classic literature. I found myself wondering out loud, if maybe I could handle going there now. Maybe as soon as this spring.

        It seems crazy, thinking about attending a difficult college full time, when I could relapse at any moment. But maybe it’s not. If the drugs are really working, then I don’t need to keep expecting another relapse.

        My mother uses a graphic image to describe our current situation- she says we’re like abused children waiting for the beating that doesn’t come. It’s really true. I keep waiting for the crash, but it’s not coming. I’m going to be able to go to school next week, and probably the week after that. Maybe it’s not insane to dream.

       Some of you have been wondering how long I have been sick. I was sick on and off from the time I was twelve until I was seventeen. I was unrelentingly ill for the next three and a half years, until my current remission.

Of Itchy Belly Buttons

      When I turned twelve a change took place within the office. A slow trickle of patients began to seek out my mother’s help, all of whom suffered from similar symptoms. The majority of them had been diagnosed with Chronic Lyme Disease, a debilitating bacterial infection transmitted by the bite of a tick. The deer tick population was blossoming in the Berkshires, and so was the number of patients felled by the illness. My mother created a new session of oxygen therapy specifically for the patients suffering from chronic Lyme.

      I had experienced the reality of Lyme disease first hand, two years before, when I was struck with a case of acute Lyme. A couple of days after a long hike in the woods surrounding my school, I complained to my mom that my belly button was itching. She examined it carefully, but there was nothing to be seen but a bit of redness. A week later I collapsed from the worst sickness I had ever experienced. High fever, headaches, incredible muscle pain, and faintness so intense I almost passed out trying to get down the stairs to my room. I remember sitting on the edge of the staircase, as the blackness left my vision, and my head started to clear, thinking, ‘Something is seriously wrong with me.’

     This was not an average flu, and my mom knew enough to ask my pediatrician for a Lyme test, which came back positive. Around the same time the test came back, I developed a very faint EM rash – the tell tale sign of Lyme – around my belly button. We thought back to my itchy belly button, and realized that must have been the tick bite. I started antibiotics – twice the dose for twice as long as normal, at my mother’s request. She was already aware of the group of Lyme patients who had been ‘adequately’ treated, but who relapsed and developed the chronic form of the illness. So she wasn’t going to take any chances with me, blasting me with a heavy dose. And it worked. After a week, all my symptoms disappeared, and I was back to one hundred percent health. It lasted for the next two years.