The world will not be destroyed by those who do evil, but by those who watch them without doing anything. ~ Albert Einstein
When I started this blog, I promised to share my journey as it unfolded, before knowing the outcome. My goal was always to explore and learn, not convince anybody I’m right, since I clearly don’t know. So here’s what’s happened since I last wrote. A day after I wrote the last blog, I ran out of Cozaar (losartan), forgot I hadn’t put it in my pill case for the whole week and missed two doses. Before restarting it, I checked my blood pressure and it was 212/127. I’ve missed losartan other times in the last few years, but never with such a severe elevation and always responsive to restarting the med. But this time, my pressure stayed ridiculously high, even after adding a second drug, amlodipine, which I have used as a second drug before, but haven’t needed in several years. I have a long history of labile hypertension and a period of persistent severe hypertension was the problem that ended my Emergency Medicine career in 1996.
It happened about a year after my first symptom, following a period of unrelenting stress. The blood pressure elevation came with a feeling of doom. The numbers were often high, for most of a year, despite all the drugs my doctors threw at it. Initially my academically inclined physicians were excited by creepy medically unexplained symptoms in a colleague. They thought I had something cool, like a pheochromocytoma or carcinoid. They sent off all their esoteric tests and when it was all negative, or almost negative, they concluded that I either had a world class case of white coat hypertension or was crazy and not taking my meds. Indeed, the independent medical exam ordered by my disability carrier concluded I could return to the ER if I took my antidepressants like a good girl, despite my protestations that I wasn’t depressed and my blood pressure was very high at home too, with nary a white coat in sight, besides my own.
It is a long, sad story, filled with injustice and stupidity, mine and my doctors’. I’ve written some of it here before, but I’m mentioning it again now, because this current episode was so similar to what happened then. The hypertension occurred in the context of an abnormal stress response and autonomic dysfunction/instability. Because my dysautonomia occurs in the setting of hypertension, I don’t have POTS per se, but a variant. The autonomic nervous system wasn’t even part of the discussion back then, and here is why. The first paper in the medical literature on POTS, or orthostatic postural tachycardia syndrome, was published in 1993, only 2 years before my first symptoms and had no penetration as yet to an average work-a-day doc: Idiopathic postural orthostatic tachycardia syndrome: an attenuated form of acute pandysautonomia?
Even by 2002 when my husband developed severe dysautonomia, it was not part of the common medical lexicon, as it is beginning to be now, finally. Recognizing autonomic nervous system dysfunction as a core deficit in Gulf War Syndrome sufferers is a big step from our old concept of PTSD. So what do we think? Was it a new phenomenon? Or were all the doctors who came before me such poor physical diagnosticians that they missed it without the benefit of tilt tables?
As I have previously reported, I did not have viral onset CFS, but a very atypical onset and course, which was clinically more similar to Gulf War Illness than ME or CFIDS, as it was called then. If I’d been in the military at the time, instead of a civilian working in a trauma center, I might have landed in that bin. Now, 20 years later, it is finally starting to occur to the scientific and medical communities that the problem is in fact more extensive than the 250,000 soldiers who got sick at that one particular place and time: Report: New veterans showing Gulf War illness symptoms. Could this be a prelude to asking questions about the pathophysiological similarities observed in the various neuroimmune disease cohorts, diseases which were rare or unknown just a few decades ago? What risk factors are shared by vets with GWI-like illness, autistic children and patients with ME? Why is that question not being asked in the context of the public health emergency that it is?
So I’ve had problems with my BP all along, but nothing as severe or sustained since way back then, until now. I’m intolerant of most classes of antihypertensives, but have evolved an approach to BP spikes that works for me, basically temporizing until the episode resolves on its own, since experience has taught me that aggressive treatment will make me bottom out suddenly at some point. I’m better off accepting a mild elevation than pushing my luck, with such an unstable baseline. Hypotension is probably worse. Certainly, it feels worse. I did all the things this time that usually help, and everything else I could think of. I mentioned in the last blog that I had reduced my dose of Deplin as I was feeling sensitive to it while things were getting worse in December. I went back to my old dose of 7.5mg to see if that was the problem. Mood improved, but blood pressure didn’t. Went up to max dose on the newly added calcium channel blocker and took supplements and herbs which support vasodiliatation and relaxation. High dose Epsom salt baths. Biofeedback. Everything worked briefly, but still with regular readings above 200 systolic, plus the continuing waves of dread I was experiencing, so similar to the beginning of my illness. I was trying to figure out which 3rd drug to add soon if something didn’t give, knowing that all the choices were likely to be problematic.
Faced with only unpleasant choices, and since the problem was related, at least temporally, to discontinuing Viread, I decided to restart it. I was in no way excited or positive about it, but felt it was the least of the bad choices. Since stopping it, I had been feeling better in some important ways, with notably less nausea and possibly feeling a little stronger. So despite a strong preference for going ‘au naturelle’, and tired of being a guinea for drugs developed for patients with a different disease by drug companies with no interest in ours, and very tired of copays, I nevertheless found myself surprised to be back in a place where restarting antiretrovirals was looking like my best option. When Ali and I first started arv’s in early 2010, I believed we had a virus which had been confirmed at 3 labs, including the Cleveland Clinic and the NCI, plus published supportive in vitro testing. It made sense then, but now? I spend my energy working on natural solutions for patients. My own goal was to get off any drugs I possibly could. But the blood pressure wouldn’t give, trumping all my reasoning. I went back on…
On the 5th day back on Viread, with a resurgence of nausea worse than before I stopped, I was cursing drugs and drug companies, when my symptoms broke, like a fever. The high blood pressure let go, as did the other symptoms that came with it in a chicken or egg fashion, such as the fight or flight feeling from too much sympathetic tone. It isn’t just a number on a blood pressure monitor, but part of an entire symptom complex. Since things turned around 6 days ago, I’m doing better than before I stopped it in the first place. I have no logical explanation for that. BP is adequately controlled, at least pretty good for me. I am planning to restart Isentress in a week and I am considering lopinavir as a 3rd drug. See the last blog for Dr. Snyderman’s data demonstrating his response to lopinavir. Kaletra is currently part of a regimen undergoing a clinical trial for a beta retrovirus, similar to MMTV, in PBC (primary biliary cirrhosis), with evidence for growing, slowly, as is always the case when it comes to investigations of human retroviruses other than HIV.
Why might this recent experience of mine be interesting to other ME/CFS patients? Hypertension is not usually a finding in this patient group. However, vascular instability is. Increased sympathetic tone is. An abnormal stress response most definitely is. All of that apparently got worse and now better again, in an A – B – A fashion, taking, stopping and restarting Viread. And, distinct from my usual predicament, I could actually measure something. Numbers! BP now coming into line after 11 days back on, starting to decrease the second antihypertensive, didn’t have to start a 3rd class with intolerable side effects. I really wanted off, but I am not afraid of these drugs, so here I am again, and so far, so good.
After watching me twist in the wind for the last couple of months, Ali is planning to sit tight with respect to her antiretrovirals, enjoying her good fortune and relative stability. For those readers who are interested in her regimen for PCOS, she has decided to discontinue Actos for the long haul, even though it helps her in the here and now. She has started a slow wean, planning to increase metformin if necessary.
Having learned the hard lessons personally with respect to unvalidated tests from small labs with special interests, I came across this on Medscape and think it needs to be shared: Lyme Culture Test Causes Uproar. The link works if you have an account, but here is the first paragraph and exerpts of the article about a culture for Borrelia burgdorferi from a lab called Advanced Laboratory Services:
A new chapter in the Lyme disease controversy opened in September 2011 when Advanced Laboratory Services, Inc, announced the commercial availability of a new culture test for Borrelia burgdorferi. Some Lyme patient advocacy groups and physicians began encouraging patients to have the $595 test, but others are concerned about the early commercialization of the still-unvalidated test. This concern may result in changes to how the US Food and Drug Administration (FDA) regulates so-called “homebrew” or laboratory-developed tests (LDTs)…
Soon after Advanced Laboratory Services’ initial public announcements about the new culture test, emails and public statements attributed to Dr. Burrascano began appearing on Lyme-related Internet sites, including comments that the culture test was approximately 94% sensitive and 100% specific.
Dr. Burrascano told Medscape Medical News that the validity of the culture test was established using blood samples provided by physicians and that the identity of Borrelia was confirmed by its ability to grow in Borrelia-specific media, by its characteristic appearance on darkfield microscopy, by reacting to published Borrelia-specific polyclonal and monoclonal immunostains, by DNA polymerase chain reaction (PCR) at 2 different loci, and by direct DNA sequencing. These data are so far unpublished…
And here is the disclosure statement at the end of the article:
Dr. Burrascano has disclosed no financial interest in the laboratory, in the Borrelia culture, or in any intellectual property and receives no commissions from the tests. Dr. Burrascano is senior vice president of medical affairs and medical director for Advanced Research Corporation, a contract research organization with the same president and corporate address as Advanced Laboratory Services, Inc. Dr. Mead And Dr. Green have disclosed no relevant financial relationships.
Oy vey. Here we go again. Another unvalidated test to justify bad treatment. What’s wrong with the unvalidated tests they’ve been using all along? The ones that are almost never negative for various tick borne diseases? And this, hitting the presses coincident with the WPI promoting Dr. De Meirleir’s lecture, yet another doctor with a history of profiting from unvalidated lab tests. I think I’ll stop now, so my blood pressure stays down, and end on a positive note.
I just had the pleasure of reading Hillary Johnson’s very fine piece in the latest edition of Discover Magazine, available to non-subscribers soon in print at a newsstand near you. Her most excellent account of the XMRV saga, “Chasing The Shadow Virus” sheds journalistic light on the events that occurred and raises desperately needed awareness for our shadow illness. I was close to the events, have my own perspective and strong opinions about what happened and why; this article rings true to me, maybe because I have this same quote on my phone in a text message, “I still see the footprints of a retrovirus..” Yes, Pandora, the box is open forever. Denial is dark and powerful, but eventually, the truth will shine through.
We can discuss possible esoteric mechanisms from now until the cows come home as to why Viread stops an inflammatory process which causes my blood vessels to go into spasm: Brain Microglial Cytokines in Neurogenic Hypertension. But why not start with the most likely explanation? It is a drug which inhibits retroviral reverse transcription. Certainly it is a real possibility that it is doing what it was designed to do.
Big Yellow Taxi – Joni Mitchell
Interesting. Thank you.
Had it been losing effectiveness on your other symptoms?
What are the differences between e.g. MEICC ME and GWS? I have never seen that listed except (IIRC) in a single Hooper bar chart, which suggested that they are nearly identical.
If we study the people who have the most symptoms, we will be able to rule out a lot of hypotheses that cannot explain those symptoms, before we even run a single study. The retroviral hypothesis seems to be in the group of hypotheses that will withstand that razor.
Thanks Jamie. Great article again.
It is stunning that some were happy to speak out against the first lab that started to sell a blood spot test, but now their stress has subsided post XMRV, they are completely silent. You would think they would be keen to tidy up the industry. I would hedge a bet these comments will return when others again start looking at the ME retroviral footprints.
@Samuel Wales: The ICC is a subjective criteria and is only a couple of symptoms different to Fukuda. It shouldn’t have been published so quickly without objective tests being a requirement for diagnosis. Until we have an objective differential diagnosis any finding will appear to vanish and reappear at random.
My understanding from the research done by Dr Baranuik at Georgetown University is that ME and GWI are two facets of the same diamond – they both share the same aberent proteome signature in terms of cerebrospinal fluid. Lyme disease has its own cerebrospinal protein signaure.
It is interesting (as well as tragic) to note that the British, Americans and French went to war in the Gulf, but only the Brits and the Americans came back with GWI. All were exposed to the same toxins, stresses etc, the only difference being that the French were not subjected to a massive vaccination programme prior to going to war in the Gulf.
I have had great success for many years now using a homeopathic preparation of recombinant growth hormone. Until recently I have not tried to analyze what I thought it was doing. Knowing I felt really “awful”/sick without it and much better with it has been enough. It is, (along with B12 injections), indispensable to my functioning. I feel more normal, stronger, mentally clearer, more balanced. More energy.
Currently I am doing some editing for the patent holder, who is about to promote it as a remedy for PTSD. He asserts that it normalizes the stress response. (He does not presently promote it for athletes, only for overall health.)
What does one call excellence, produced repeatedly and regularly? Is it not “greatness?” I am sitting here in tears because for the first time in the history of my illness, I can actually associate some medical terminology – words! – to symptoms for which I’ve had difficulty explaining even to those closest to me…..because of you. You always talk about oxygen….but to me this blog itself is oxygen! When will the supposedly smart people with the money and power realize this???
Hi and thank you for your message. Is it possible to get more information on your remedy? I’m a believer in homeopathy but a cautious one. For me, B12 has not done anything despite taking it in doses of 60-100,000 mcg at a time and fairly regularly. I also take more than 50 different supplements daily along with a highly but not entirely organic raw diet. The latter has helped me the most but the supps have not done much, with the slight exception of magnesium and GABA. Thanks for anything you can offer…..
GK, the product is called NuOptimal found @ http://www.CellHarmonics.com.
I also take one called Optimmune, (from the same company), which enhanced the G.H
As for B12, I inject it.
I take a rather vast array of supplements too1764, and most of them, even the multiple, make an appreciable difference. (The rest are antioxidants which I take on faith.)
Jamie mentioned differences from Gulf War disease. My question is what those differences are.
I will not respond to the opinion on MEICC as I want to keep the comments relevant to Jamie’s post.
Well I am one who showed that response to something. Perhaps a “footprint of a retrovirus”. All but one person in my immediate family is sick. Some have died from cancer, some have survived it, and some are living with ME/CFS, Parkinson’s, or MS. Interesting given the fact none of these illnesses run in my family. And we are not the only families dealing with these various illnesses or cancer. There are many others too. I know as I’ve seen it written about over these past 3 years by other patients. Something isn’t right.
Luckily my son and grandchildren are fine so far. I think if anything were to happen to them it would be more then I could take. I’ve been a caregiver to all my family members at some point in their illnesses. And currently I am for both my father and mother. My sister also contacts me twice a day from her nursing home. She’s 57 with ME/CFS and congestive heart failure.
A year ago it would have been questionable if I would be able to continue to help them all. I was getting sicker and had developed shortness of breath that made even walking the short distance from my car difficult. I also developed profound fatigue that was way worse then I’d experienced the first 18 years of my illness, I’m nearing 20 years. I was very weak and barely able to walk up a couple stairs without my legs giving out. I’ve lost a total of 60 lbs over the course of my illness do to food intolerances. I fight to keep my weight up because it’s difficult to find foods I can tolerate due to GI symptoms. My biggest fear was to not be able hold my grandson when he arrived, or help them because I was just too weak.
Things seemed to turn around for me personally just a few days after I started a nutritional supplement. I’m enjoying a higher quality of life then I was ever since. I’m able to enjoy my grandchildren. I have energy to do it and am so happy about that. I have found something that is helpful for me for now. But I could get sicker again tomorrow. Nothing is a guarantee and certainly not with this illness. There’s no research, treatment or even hope for a cure. We don’t know what is causing it. I still have fears for the next generation. I never want them to experience what I have. So I hope for their sake whatever is causing this is found. Be it a footprint of a retrovirus or whatever, something is definitely wrong.
This patient population deserves better then what we’ve been dealt for the past few decades now. Patients are sick, they are dying and they are tortured in their own bodies, while lying alone in their beds. How horrible is that? We need action and we need it now. We needed it 30 years ago. Doctors have said there are cases that are like end stage AIDS, heart failure, and cancer. Others are seeing possible immune problems. Exactly how long do we have to wait, and how much more money will be made off us? How much more suffering does there have to be? When all families are affected?
The comment above about the ICC is not opinion, it fact. The ICC does not require 1 objective test. It is a subjective diagnosis.
The paper is available for free for everyone to see.
ME and GWI share the same aberent proteome signature. They are essentially two facets of the same diamond, according to Dr Baranuik’s research at Georgetown University, Washington D.C. Lyme disease has its own cerebrospinal fluid signature
Only the Americans and Brits came back with GWI. The French who were also in the Gulf did not as they were not vaccinated like the US and UK troops were.
I have twice tried to post a comment but can’t get through!