1. a view, judgment, or appraisal formed in the mind about a particular matter
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.
>Jamie –
I've been reading your blog for a while, though I'm not sure I've commented before. For me, it's been very thought-provoking.
Personally, I think it's obvious that you are simply sharing your own personal experiences and are not offering medical advice to anyone.
I've been curious for a while about you and your daughter's past history with Lyme. Do you feel that you were both misdiagnosed with Lyme? Or do you feel you were actually infected with the Lyme spirochete but were not treated effectively? Please excuse me if you covered this in your blog before I started reading.
I have had CFS since March 2002. By 2008, I had improved somewhat, thanks to lifestyle changes, anti-virals, and low-dose naltrexone. I was fairly high functioning for someone with CFS, though I still could not work outside the home and still needed my daily nap. I got Lyme in July 2008. I'm quite certain of this chain of events because my symptoms changed dramatically at that time. I've now been on high dose abx for 2 years and am having trouble getting rid of the Lyme completely, presumably because of my immune system dysfunction.
Both of my sons also have CFS, and my oldest was just diagnosed with Lyme, bartonella, and babesia this summer. His situation is less clear because he's had Lyme twice before, so we're unsure how long these current infections have been present and how much of his symptoms are related to CFS vs. Lyme and co-infections.
Sorry for being so long-winded – I was just curious about your own Lyme diagnoses – whether they were mistaken diagnoses or whether there are other reasons you didn't get well on Lyme treatments. Do you believe XMRV or other retroviruses are also behind Lyme or that some people diagnosed with Lyme actually have CFS/XMRV instead?
Keep up the good work – your blog is serving as a beacon of hope for many of us.
Sue
>Your comment about "courageous doctors" resonated. I include you under in that category. I am reminded of the philosopher's comment about how people react to new information; the first reaction being to scorn and denigrate information that defies what is understood in the culture at the time. (If I wasn't so brain fogged, I might even remember the gent's name). Medicine is replete with pioneers being scorned. Semmelweis comes immediately to mind.
I was notified today that my XMRV was positive. After 10 months of feeling like an unburied corpse, I have great hope and gratitude that there is a treatment that has the potential to actually impact the etiology of my CFS, instead of just trying to ameliorate symptoms — which hasn't worked anyway.
Keep up the good work, Jamie!!! I love the idea of your being able to return to work. YEAH for you!
>It may be irresponsible if you were writing to a more illiterate audience. Most of us have studied this mystery copiously, and we understand that what you are telling us is simply an emerging option. It is then up to us to discuss it with our personal physicians, weigh the benefit to risk ratio, and decide for ourselves if it's an experiment we want to take. I, for one, appreciate the information you've given out. It will definitely help me.
>Jamie, I really really appreciate your opinion and thank you for sharing on many different aspects of the disease. You're doing the pioneer work for all of us and sharing and it is great to follow.
>This has for me been a very long,difficult,frightening, and lonely journey (diagnosed,1991)… "opinions" such as yours become signposts along the way. Blessings for which I am grateful. Thank-you
>"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)."
I am the patient that posted several comments to your last post asking for more balance, and I was glad to see this part emphasized. Please be clear that I never took issue with your reporting on your treatment. You can go into as much detail and speculation about why it's working for you as you want, but contrary to what Shelli is saying about us being a "literate audience" many of us do not understand how retroviruses work, nor do they have the decades of clinical experience as you do with HIV drugs. We are, in many ways, green.
Please continue to share your account with us. I have personally found it very helpful, as I was honestly considering taking the drugs on several occasions. However, please also consider the possibility that statements like: "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." may reflect the fact that CFS patients have adapted their activity levels to not worsen themselves. It is not beyond the realm of possibility that if all of us went out and exercised for a year the preexisting cardiac dysfunction may get appear much worse on a "careful echo."
>I am really not sure what I think about XMRV. I hope it's the missing link but if it is then what does that mean for people who test negative? I am a severely affected by CFS and at this point in time I think that if I were to test negative I would be devestated. I try to keep a balanced opinion about these things but there has been so much hype and hope placed on XMRV it's hard not to get wrapped up in that. I am in Australia and at this point there doesn't seem to be a way to get tested so I really don't even know if any of this applies to me.
I am so glad to see people getting better for whatever reason, so thanks very much for sharing your experience Jamie.
Lastly, I find it difficult to give any weight to comments left by 'anonymous' contributors!
>"Paranoia comes cheap. Into your heart it will creep. It starts when your heart is afraid. Step out of line and the man comes and takes you away."
I was splendidly healthy. I worked out with free weights: 20 reps of a varied menu of sixteen exercises, alternating days with walking miles and miles and watching my pulse track my efforts flawlessly. Ahnold was my guide :)
In six weeks I was not able to do the warmups. Thirteen years later, I still can't. I can walk and drive. I do the shopping: meds and food/water. Very little else. And not even that, every day. We make do with my "lazy days".
CFS does not occur in a vacuum. I was fit and fifty. Now, I am less fit and 63. My healthy friends have been dying for years. Some older, but, not all. I am not at all infactuated with the idea of extending my life by lying here, quietly listening to classical music, forever.
Thank you for sharing. It is a joy you two are up and about :)
Al
>As Sue above, I'm curious what is your experience with lyme treatment. Did you ever test positive for borrelia burgdorferi? If so have you tried the best treatments ILADS has to offer? If the antiretrovirals make you feel better, will you also resume the antibiotics (as you hint to in another post)?
>anonymous – I don't see why you feel the need to stay anonymous, your counter point view isn't that far out or anything offensive.
Regarding Shelli's point, compared to most patient populations we are way more informed about our condition, sometimes sadly more so than our doctors. Yes of course we aren't retrovirus experts, it isn't our job to be – that is what our treating doctors are (supposedly) for & they will either simply not prescribe the meds (vast majority of cases) or do so whilst monitoring us very carefully.
Like Lee Lee, I'm also in Australia & have no hope of being tested any time soon, let alone finding a doc prepared to prescribe ARVs (most over here are hesitant to prescribe hydroxy-B12 shots, let alone regular AVs for chronic herpes virus infections which makes ARVs even less likely again by another order of magnitude!)
Reading blogs like this at least gives us hope that maybe if we hang on another 5 years we may get some treatment that actually does something meaningful.
>I understand that this blog is a sharing of treatment experience, thoughts and pure speculation about what's going on with the drugs etc. I don't view it in any way as medical advice. I don't look for ambiguous or misleading information here that I can pick up and run with.I assume fellow sufferers reading the blog are of the same mind.
What I'm looking to understand here is what the treatment I'm likely to be taking in the near future may be like for me. That's all. In saying that, I also understand that the differences in illness experiences will conceivably mean differences in treatment experiences too. I'm brain damaged but not stupid.
I have to say that I've watched open mouthed the concern expressed on blogs and in the news media about treating XMRV with antiretrovirals. Why so much emphasis on risks and possible side effects? It's way out of proportion given the length and severity of illness for most, and anyway when did they start caring about us so much? I've been ill 27 years. I've lost house, husband, career prospects and child bearing years. All risks are long since cancelled out for me and millions of others just like me. Whatsmore, every drug I've ever been prescribed has been no more than experimental because my illness is not understood. We don't know what any of the drugs I've taken over the years have done to progress the illness or to interfere with possible future treatments. So why the big concern about drugs that have been developed to treat retroviruses being used to actually treat a retrovirus. It's all a bit irrational, isn't it?
Lisa Simpson
>Ash,
Thanks. I was beginning to think that wasn't the case given that my responses probably had something to do with triggering this post and the tide seems to have been firmly against my counterpoints on multiple cfs forums.
Since I am a fairly active member of those forums and have, I would rather not stay under the cloak of anonymity so the mud isn't slung at me directly. However, I've tried my very best not to exploit my anonymity in any way and have, in my own estimation, been pretty balanced and respectful in my criticisms.
Some have insisted that I shouldn't be commenting since I have no understanding of what this illness really is. Like I mentioned, I've considered trying ARVs on more than one occasion despite knowing about the potential mitochondrial damage caused by AZT. I think that should say it all.
Dr. D-J and other brave patients are truly canaries in a dark and unknown coal mine, and if I were in her place I would be reporting details tooth and nail in a similarly diligent and transparent manner. It seems that those that have taken offense to my responses fail to understand that I have no issue with her reporting.
What I do take issue with is when Dr. D-J says that she herself was diagnosed with cardiac dysfunction, yet she discounts the possibility of it worsening with ARVs for other patients when HAART is clinically shown to worsen mitochondrial function and DD, or that our diastolic dysfunction doesn't exacerbate with time despite the adjustments that all of us have made in our lifestyles to compensate for the preexisting dysfunction. Simply because we're not "dead in a few years" doesn't mean that our condition is a stagnant one. Since Dr. D-J seems to be confident that CFS is an infectious disease, it would seem to follow that she would be open to the possibility of our DD worsening simply because an infectious pathogen may be part of our etiology.
The reports from some CFS physicians treating with ARVs has been very mixed. One doctor has treated more than 10 XMRV+ patients with ARVs and has seen a variability in response that he didn't see in treating AIDS patients for decades, with only one patient getting a really good response. The reasons for variability suggest that either 1) the sample size is too small or 2) these may not be the proper drugs for the patient population. Just like Dr. D-J is probably aware of this information because she is in constant communication with docs prescribing ARVs and isn't at liberty to give out names and numbers, I am similarly not at liberty to do so.
This is a gammaretrovirus, so the comparison with AIDS is limited in value. HTLV is also a retrovirus, and HAART has been shown to have limited value there without first treating with interferon. AZT may have saved many AIDS patients but we ME/CFS patients face a different set of considerations. Some may have lived barely passable lives for the past few decades and hence are willing to sacrifice losing years of their life, very severe cellular/organ damage, or even death to regain some quality of life, but what if they're not? What if we're not, as Shelli suggested, universally literate or some patients don't have the energy to do their own research, see a blog from a physician that is very much "sold" on the big 3 ARVs? Don't you all think that patient needs to hear in plain speak about the possibility of mitochondrial toxicity or worsening diastolic dysfunction?
>Lisa-
It may very well be the case that most patients do not care about the risk of treatment. However, I do, and I can guarantee you many other ME/CFS patients do as well. It is not up to the disseminators of information to decide what is rational or irrational in the receipient's set of considerations. It is up to the disseminator to disseminate information.
>We have brain damage, me and everyone else with brain damage. Tissue damage. Functional damage.
Some minds adapt and find a way to be as useful as possible.
The tricky bit is getting the rest of the world to learn to think properly, like me.
This "syndrome" is no help, is it?
Al
>Thank you for so openly sharing your opinions.
jenni in Reno (XMRV+)
>In response to the above, I don't speak on behalf of anyone else and I don't mean to imply that XMRV+ patients are acting irrationally when disseminating available information about treatment. There are rational arguments for and against starting ARVs if you are XMRV+ and I am 100% pro-choice on that issue. I support anyone's decision either way.
What I consider irrational is the caution that is now being suggested/imposed in the face of what is known versus the reckless endangerment that has traditionaly been employed when prescribing for this poorly researched and poorly understood illness. My illness was considerably progressed, for example, in its second year when I was advised to take up an exercise regime that included aerobics twice weekly (advice that's still being freely prescribed in spite of the published papers identifying heart and muscle defects). I'm fairly certain that that same doctor if he were presented with evidence now that I was XMRV+ would deem ARVs too risky. Similarly, a year after after XMRV was identified in a substantial percentage of reportedly very ill people, clinical trials are deemed too risky. I find that irrational.
Lisa Simpson
>@ the "anonymous" obsessed with DD and anti ARV
Dude, give it a rest. ppl who read jaimes blog know that this is an experiment and not medical advice. I am glad she and her daughter are better. May they continue to improve.
>Dear Jamie,
in my opinion, someone who is calling you 'irresponsible' for sharing your thoughts and experiences, is saying your readers aren't able to make up their mind. Why would your opinion ben more 'dangerous' than that of any other? We are all adults here, who can think for themselves. Once again, thanks, for sharing.
>Hey Lisa,
Thanks for your thoughtful response as opposed to Mr. Barnett's casual dismissing of this "obssessed dude" entirely.
I do understand where you're coming from. I do understand that telling people to wait for clinical trials is much riskier on a global scale than a few brave souls trying these drugs. It seems most readers are still unable to separate my unequivocal approval of Dr. D-J's reporting of her own treatment, of Judy's haste at starting clinical trials, and of following what the science tells us, from my disapproval of Dr. D-J and others casually dismissing the risks that science has alerted us to with HAART.
If I mentioned the CFS physicians I've spoken with that have echoed my concern with these risks, so much that they simply don't think the big 3 by themselves is a good idea, then perhaps my criticisms wouldn't be so marginalized.
One of these physicians also told me that given what we understand about the low replication rate of XMRV, a protease inhibitor to prevent the spewing out of virions absolutely needs to be included in treatment.
From my many years on the CFS forums, there are so many times that members have posted asked the more science-literate posters to please dumb down or summarize into a few key points the abstracts or theories. Those who state without hesitation that everyone in the ME/CFS community is able to assimilate all the science and make fully rational decisions are, well, rather irrational.
I've beat this horse to death by now, but I truly hope my reasoning has struck some small chord with Dr. D-J and she will consider discussing the potential risks with more gravity when she speculates on how patients beside herself would do on the drugs.
>The paternalists who tell us not to even consider ARV's just don't understand that for some of us it is – try ARV's as a last shot at getting better, or set off for a final trip to Dignitas. I am not in that position, thank heaven. But quite a few PWME are desperate for effective treatment.
Dr Jamie, thank you so much for sharing your experiences. I think you may agree that without knowledgeable medical supervision it is, at this time, risky or even foolish to follow the road you are recording for us.
But those who say it is too early for clinical trials have no idea of the day to day experience of a person with severe ME. Instead, they consider us to just have – maybe – chronic fatigue, headaches, a touch of depression even. Yeah right. I wish they could walk in my shoes for a while. Then they would not be so obstructive to trying ARV's for those with severe ME.
Treating HIV with ARV's before the etiology of AIDS was perfectly known was a short cut to understanding that worked. If clinical trials do not attract funding, there will be desperate people trying for a last shot at life by taking unsupervised ARV's. We need hope to hold onto. We need clinical trials now.
>Regarding the drugs:
I think that patients who want to try these drugs should have access to them, under the prudent care of a responsible physician.
People are too sick not to have options.
Regarding the inflammatory flare:
Dr. Cheney recently commented that the inflammation from a variety of triggers could activate XMRV. The things he cited were a vaccine, various infections (flu, Lyme) and toxic mold.
>Perhaps most interesting of all was what happened with the injection of a bolus of foreign peptides into macaques that had apparently completely cleared the virus from blood. There was a huge reactivation of infectious virus in the blood proving that latent but persistent virus is just below the surface and that XMRV infection cannot be completely cleared from all reservoir sites. The peptide injection mimics an acute infection (? borrelia or the flu), an immunization or even acute mold exposure.
That being the case, eliminating the sorts of stressors that will cause XMRV to reactivate seems like a prudent idea for people who are attempting to make it go latent with drug therapy.
Unfortunately, people with Lyme infections can't magically get rid of them.
Not getting any sort of vaccine during treatment seems a very good idea.
Dr. Montoya strongly cautioned patients during the Stanford Valcyte trials to take every precaution not to get a flu/cold while taking the drug. This seems like it might be a good idea for the HAART drugs too.
I suggest that attending to inflammatory triggers in the environment is a good idea too.
Please note that Dr. Deckoff-Jones is living in what she states is a non-moldy house in an area of New Mexico with very fresh outside air. I thus am positing that her biotoxin exposures are quite low.
Might that have anything to do with the relative ease with which she and her daughter began taking the drugs? I don't know. And neither will anyone else, until a) tests of these drugs are done on other ME/CFS patients and b) efforts are made to see if patients in good environments do better on them than patients in bad environments.
Hopefully we will see both of these questions addressed in research studies soon.
In the meantime, thank you very much for sharing your experiences, Dr. Deckoff-Jones.
Cordially,
Lisa Petrison
>I appreciate all input from both sides of the issues here.
I liken my sequestered, exiled illness to Tom Hank's wonderfull portrayel of a man being stranded on a deserted island far from any hope of rescue. After 5 years of barely staying alive and not much else, God sends him a sail. I don't think he really cared what the shape and structural integrity of teh sail was, or the many risks he might encounter on the open water using it. All that was important for him was he had a 'good enough' sail to possibly get him off the island, and home. He had charted the weather patterns for years, and knew what precautions to take, and what risks might be at hand.
I don't care that there may be better sails for me later on, given that imho any sail I get in the future will still present risks. All I know is a sail is here now, and I may not be here later.
I will be starting AVR's in November. I accept all risks. It's not like I have been existing risk free these last 17 years. I also accept that even with all the relevant information that may be available by that time, to guide me on which ARV's I might consider, that more complete information may not be available to fully understand the risks. I'll start anyway with the sail I have anyway. If a better sail shows up later, I'll switch.
>I likewise understand where you're coming from and I'm aware you're not discouraging the blogging. Like you, I'm merely expressing an opinion here, I don't in any way want to disrespect or quash anybody else's. I believe that this kind of discussion, like this kind of blogging, is very necessary right now.
I'm reasonably literate on what's being cautioned about. I read, listen to and watch everything that's being written and said about XMRV and, while I admit that I don't always fully understand the science, I do fully understand that there are real risks in starting ARVs because we don't understand the disease enough to understand what the drugs might do, and that may therefore mean we do further unintended damage and, worse, ruin our chances of being able to use a treatment that works when (if) it ever arrives. I think that's basically the crux of the argument and, with respect, I don't think too much scientific literacy is required to understand that. I think the small numbers trying ARVs would suggest the message has largely got through.
I would like to point out however that, though I may understand the arguments for not starting ARVs, I think that the logic does still rather ignore the fact that there is an enormous number of people in the world who have been severely ill for decades in which the disease itself is likely doing what we fear the drugs might do – irreversibly damaging mitochondria etc. These people (myself included) have lost the best years of their lives to this illness; it's life we want a chance at now, not old age. Many of us are prepared to accept the risks of drug trials because, really, what good are safe treatments if you're too old to benefit from them? It's not years of good health in the old people's home I'm longing for. Why can't I and the millions like me who've been ill for close to thirty years, accepting the risks involved, volunteer for clinical trials right now? What's the problem with that?
Lisa Simpson
>"I was beginning to think that wasn't the case given that my responses probably had something to do with triggering this post…"
That's funny, I thought this post was due to MY responses. People may be assuming that there was only one 'anonymous' on this blog, when there could be several.
For now, I just wanted to thank Dr. Deckoff-Jones for her most thoughtful and balanced post to date. It's a striking contrast to past posts that I at least perceived as "Why isn't everyone taking ART's already" articles, without talking about some of the other factors (like lyme just as one example) and cohorts.
Like 'anonymous' above, I don't agree with everything she said (I don't agree with her assumption that everything CFS-wise is caused by a virus, just as one example), but very much appreciate her most open and forthcoming post.
>One's approach to healing is an individual choice.
I post here a remarkable story of a woman suffering from CFS/ME/MCS–in a wheelchair at one point–and near death a couple of times, very far along her healing path now and travelling and working:
http://planetthrive.com/2010/09/monet-clark-interview/
Her healing approach was in large part spiritual/energetic/alternative, rather than drugs. Very impressive.
Each individual has to follow their own path. It's quite possible our human species has been cohabiting with animal retroviruses, avian, murine, sheep, who knows, for quite a while. Maybe they are implicated in disease in complicated ways. Maybe they smolder and are set off by major pathogens like HHV or borrelia. Maybe MLVs are actually communicable and causative, but I don't see convincing evidence of that yet.
>God I hate being sick. 18 years and running. The last 2 getting really bad. Still working 40hrs a week. It's torture with the disease flaring. Got bills, have no other choice. Yesterday and today were some of the worst days in a while. Tested XMRV+ this past July. I just want a treatment. Period.
If anyone else on here is computer literate, please help me with the wikipedia XMRV page. There are two anti-XMRV wikpedia editors that keep modifying the opening paragraph to state the connection between CFS and XMRV is suspect. Right now I have it corrected, but by tomorrow they will probably remove my PNAS article reference. This page is one of the most widely read entries when google searching "XMRV." Help me beat these editor jerks who have been anti-WPI, anti-XMRV for over a year. Even with the PNAS article, they refuse to edit the opening paragraph.
>To those asking about Lyme, read back in the archives. There are not that many posts and they are good posts.
Thanks to everyone who is commenting here.
At least we agree,
we
need
FUNDING
AND
CLINICAL
TRIALS!
>Just keep getting better and keep your "opinion"coming. We all have to sort out what may or may not apply to our individual subtype, trigger or whatever anyway. Trust your ER doc's gut as dealing with the worst of the worst tends to help one become a good and rapid diagnostician out of necessity. As for treatment- well now that is where the art comes in and what works best in our own hands and with what we are most comfortable. In this case there are no absolutes,no cookbook of treatment protocols, and you formulate a plan with good advisors and adjust as is appropriate. I thank you for all of the information you put out as I have learned a great deal more from your resources and information than anywhere else. The soul sharing is appreciated more than you can imagine! My testing will be going out soon, and I have much anxiety about the results, but it is mandatory to "know" what I can find out now and hope some other options come as a result!
>I agree with Dr. D-J, that many desperate people try to make sense of their disease from what they read on the internet. I am one of those people. I have absolutely no medical or scientific background. When I became so ill I was certain I was going to die (and none of the specialists could figure out what was wrong with me), I turned to Google. Thank you Google.
Someone asked if Dr. D-J had tried the best Ilads had to offer for Lyme disease. I don't know if she has, but I have. I followed the guidelines and did agressive antibiotic treatment for three years including 1.5 years of IV Ceftriaxone. After IV Ceftriaxone destroyed my gall bladder, (and depleted my bank account), I finally got it that antibiotics and antiprotozoals weren’t the answer. I was diagnosed XMRV+ at the end of August and started antiretroviral treatment a week ago. Like many people with neuroimmune diseases I also have other active viruses and heavy metal and mold toxicity. I have tried many treatment regimens both “traditional” and “non- traditional” with no sustained improvement in fatigue, pain or neurological symptoms. When I got my XMRV results, I wasn’t sure if I had the energy to fight yet another pathogen. How could I swallow more pills, take more risks, experience more side effects, and maybe still not get better? With some exceptions my typical day is spent in bed or on the couch. On decent days I make it to the grocery store or pharmacy. I’ve lost my business, my autonomy, and precious time with my family and friends. I really don't feel like I have much else to lose. I have done the research and am aware of the side-effects. I realize this might seem reckless or even stupid to some people. I guess in a way I’m choosing the lesser of two evils. But what I’m really doing is exercising my right to make informed decisions regarding my own medical treatment. I am very grateful to Dr. D-J for sharing her opinion and providing anecdotal information to those of us who use the internet to try to make sense of our disease(s).
>Anonymous from Sept. 23rd talked about her lyme treatment. My 18-year-old daughter was also treated by a lyme-literate doctor and started on IV Ceftriaxone. Within 6 months my daughter had to have her gallbladder removed too. My daughter’s introduction to CFS and POTS started immediately after a severe infection put her in the hospital when she was just fifteen. We never knew if the infection was bacterial or viral, but six weeks later she tested positive for mono. Interestingly she also initially tested positive for lyme disease but the second test was negative so the doctors took it off their list of possible causes. After years of searching for a diagnosis, I thought her doctors might all be wrong about the lyme so I went against their advice and took her to a lyme literate doctor hoping to find a cure.
She was treated for six months with a variety of antibiotics, both IV and oral, as well as Valtrex, Difflucan and a few others I can’t remember. And for my daughter, she felt so well at the end of the six months that she was able to attend school again. She continued to feel great for about another six months but then slowly but surely, she started getting sick again. Now three years later, she is worse than ever.
I can’t help wondering what part of her treatment regimen caused her to get well for that short period of time. Was what she was taking just keeping a possible viral or bacterial illness at bay, only for it to come back full-force when she went off the meds? I don’t feel safe putting her back on the IV Ceftriaxone after what it did to her gallbladder, but I wonder if the Valtrex might have contributed to her temporary symptom relief during those months after the initial lyme treatment. I would like to consider having her try a six-month period of just the Valtrex or Valcyte since there does seem to be some research that shows it helps some CFS patients with high antibody levels for EBV. At least this would give us some avenue to pursue until we find out more about possible clinical trials or treatments for XMRV.
Unfortunately I can’t find a local infectious disease or other specialist in Maryland willing to try this. I keep reading about how patients around the country are working with doctors who are willing to treat them with Valtrex or Valcyte or other antivirals, but how does one go about finding one of these doctors? Every doctor I approach about this won’t even consider it. If anyone has any suggestions about finding a medical specialist willing to try an antiviral treatment approach, I am all ears!
For now, though, I will closely follow Dr. D-J’s reports on the progress of her treatments. Her daughter is my daughter’s age and I know how devastating it is for a mom to watch her child suffer without being able to find a way to help her. I can’t imagine how difficult it must be for Dr. D-J to fight this battle for both herself and her family members. She and her daughter have so much courage to take the steps they are taking and I am so hopeful that they both find a way back to good health. They are a beacon of light for those of us and/or our family members who are so sick.