I’m aware that reading past blog entries leaves something to be desired in terms of understanding our clinical course, so this is an attempt to take stock of where we’ve been and where we are.
I hate rating scales. I picked the KPS as the most basic. I considered all the rating scales used most commonly in CFS. I like following hours upright, but can’t stand to keep track and it varies from day to day anyway. Some scales lump physical and cognitive deficits together which doesn’t work for us, as our experience is that cognition is the last thing to go and the disparity between physical and cognitive symptoms makes accurate answers impossible.
Having followed our improvement in KPS points, it doesn’t seem useful or relevant at the moment. Here’s the part of Karnofsky Performance Status scale that I’ve been attempting to use lately:
- 80% normal activity with some difficulty, some symptoms or signs
- 70% caring for self, not capable of normal activity or work
- 60% requiring some help, can take care of most personal requirements
The difference between 70 and 80 KPS points, involving a return to function in the world, seems a much bigger incremental improvement than the 10 points before that, which are about improvements without returning to the world of work. I’m beginning to confront the realities of returning to work and, trust me, it’s a much bigger step than going from being cooked for/picked up after, to doing those things for yourself.
So I’m done trying to quantify it. It’s a moving target anyway, because the illness is still there, a sine wave, of variable period, though now superimposed on a slow uphill trajectory. I’ve said in the past that we were still below water, looking up at the surface. Now we have broken through, but the troughs are still a little under water. I’m not interested in arguing with anyone about whether we are better. We are a lot better. Looking at roughly three month increments, our slow but steady improvement is obvious. The important question is why.
This is what happened. We started AZT and Isentress, within days of one another, in early March. The drugs flared all of my symptoms, but my neurological symptoms in particular. Ali did not have problems starting the drugs. A few weeks into treatment, I experienced a reduction in malaise (for me a feeling of viral prodrome, a persistent symptom for 15 years). At about six weeks we both experienced a transient increase in physical energy which was uncharacteristic of anything we’d experienced in years. However it didn’t last. Also my flared symptoms weren’t resolving. I was a bit frightened by the flare, since I had no idea what to expect, and I also started hearing negative reports of people who had started on Isentress alone. So we both stopped Isentress and, surprisingly, we both got noticeably worse, Ali with immediate increase in sugar reactions, strangely. So we went back on. I would like to say here that what we did is not a good idea. Because we know nothing about the potential of the virus to become resistant to the drugs, commitment and compliance with a regimen is likely very important. With HIV the success of treatment declines in direct proportion to poor compliance.
I tried to add Viread and almost immediately experienced a severe flare of symptoms. I again chickened out and went off. Ali, who had had essentially no trouble with the drugs so far, decided to take it (about two months into treatment). Two weeks after adding the third drug she experienced a noticeable reduction in symptoms. I decided that I too wanted to take it, so I tried again at half-dose, with fewer problems than before. I went up to full dose after a week (roughly three months into treatment). About two weeks after adding the third drug, I too experienced improvement.
In August we were doing well enough that we tried to transition to more active, stressful lives. Ali tried school and I went to Reno for a few very active days. I expected a full crash after that trip, which did not come. We both dipped a little over a month or so. We backed off and started slowly up again, more moderate in our expectations, knowing that we are improving, but slowly.
Moment to moment, day to day, even week to week, we can’t feel improvement. The variability that characterizes the illness continues, but it all seems so much less potent. I use the metaphor of an abusive boyfriend who drops by to slap me around if things get too good, but he is visiting less and less often. He’s getting soft or I’m getting harder to push around. Some days, he has no power over me at all.
Ali started Deplin about six months before antiretrovirals and Actos two weeks before. I started Deplin a couple of months before antiretrovirals and Actos recently with an obvious response. Recently we have added B12 shots. We have taken a lot of parenteral B12 in the past, including daily injections for a month at a time on a couple of occasions, without noticing benefit, but what didn’t help before treatment with antiretrovirals, might now. I am hearing from people who report having been helped by B12 injections.
We have otherwise been on a supplement holiday since starting antiretrovirals. We have taken tons of supplements over the years and it was a relief not to take supplements for a while. We are now starting to add things judiciously. We are taking Meriva SR, a more absorbable form of curcumin, for NFkB inhibition.
After about a month of Actos 15mg, and with further reading, I went up to 30mg. The literature generally talks about 30-45mg daily. Here are a few more references pertinent to the use of Actos in X infected patients:
- Effect of pioglitazone treatment on behavioral symptoms in autistic children. Boris
- Effect of pioglitazone treatment in a patient with secondary multiple sclerosis. Pershadsingh
- A pilot test of pioglitazone as an add-on in patients with relapsing remitting multiple sclerosis. Kaiser
- Proinflammatory Stimulation and Pioglitazone Treatment Regulate PPARγ Levels in Peripheral Blood Mononuclear Cells from Multiple Sclerosis Patients. Klotz
- Pioglitazone Enhances Mitochondrial Biogenesis and Ribosomal Protein Biosynthesis in Skeletal Muscle in Polycystic Ovary Syndrome. Skov
Ali completed her writing challenge. 50,000 words in a month. Quite an exercise. I’m sure you will hear from her when she recovers from her writer’s cramp.
>Dr. Deckoff,
Are you experiencing any symptoms of fat redistribution? Do you know if this is an expected outcome of the antiviral treatment you are on? Do you know how likely one will get this while taking retrovirals? Is it permanent?
I have sent you an email asking this same question and have not heard back.
This is an important consideration when determining if one is to get treatment and I would appreciate you sharing what you know on the subject. My doctor who had me tested for xmrv has no experience with retrovirals and so could not answer these questions and my knowledge is limited to what I have read on the internet.
Thank you in advance.
>I'm on treatment and yes I've lost weight .
>So amazing and exciting to read the changes over the months!
>I apologize for missing your email. I try to keep up. We have not experienced any noticeable fat redistribution. I went through a period when I was having more weakness and a feeling of lactic acidosis that I thought might be attributable to AZT. These symptoms have resolved on Actos. Ali has no particular awareness of the drugs.
My understanding is that fat redistribution from AZT takes years to develop, if it does, and is reversible when the drug is stopped.
Please tell your doctor that I am more than happy to communicate with interested physicians.
Jamie
>Big thank you for sharing your experience, once again Jamie. It is invaluable.
>I have Lyme and CFS/XMRV and my improvement is incredible. Treating the body holistically is key. I can honestly say I am recovering with the thanks to my primary care physician, my Lyme doctor, my CFS doctor, and my naturopath.
The methylation protocol and methyl B12 shots is what kept my anxiety under control and made me feel more stable (much more so than benzodiazepines). I did a detox and a metal detox, and shortly after, I didn't feel the need for my methylated supplements anymore. It felt like a physical addiction (my body would freak out without the supplements), but with detox (no, I am not talking about trendy green juices, etc), this "physical addiction" to these supplements went away.
I still have symptoms, and still recognize them all the time, but I can get out with friends and act normal and full of energy now. I don't typically crash, and I don't need naps, but I am still currently exercise intolerant because of lingering chest pain. This of course is getting better, but still a prominent and disturbing symptom. My last crash was after shopping the day before thanksgiving at crowded stores and a very crowded grocery store. I can handle a lot more stimulus now, but that was too much. I knew better, but I tried to push myself anyway.
I'm not going to list everything I take/took, but from reading your blog, I feel that I got just as far as you did without taking drugs like AZT considering where I was.
I practically bed bound at one point. I couldn't tolerate light, noise, chemicals, or even television. I would cry hysterically for many hours straight in anxiety, fear, and the overwhelming sense of doom. I was in a lot of pain as well. I didn't have anxiety or fear about anything, but I tried many forms of psychotherapy (some involving the use of EEG) anyway. Pyschotherapy confirmed my suspicions: it was all neurological. My neurofeedback therapist was encouraging me to get a SPECT scan and QEEG since my EEG and other scans (MRI and CT) were unremarkable.
I would like to thank you for your blog. It has made me realize that in my particular situation, toxic pharmaceuticals like AZT probably aren't necessary with my condition. That's not to say that others don't need them (I don't know).
I'm not trying to bash you or your blog. I read it in the past, and I wanted to see if you were completely better. I am glad that you feel that AZT helped you, but I sincerely believe this is a syndrome you can only solve holistically. Pharmaceutical drugs have their place, and I hope there is a great pharmaceutical for ridding the retrovirus in the future, but as of now, the answers for me have not generally been pharmaceuticals. However, I have had some antibiotics and IV antibiotics, and I do believe they their place. Most other "drugs" that have helped me came from a compounding pharmacy, and you can't exactly call substances like Vitamin B12 a drug.
CFS with the combination of chronic Lyme is a trivial puzzle to say the least, and I started getting better once I started listening to my body instead of trying to ignore every message. Unfortunately, I don't believe there will be a one-size-fits-all protocol for any form of CFS as each person probably has many unique components to their disease. I hope this syndrome/disease will end up being another "great teacher" that helps the mainstream open their minds a bit and adopt a holistic approach to solving chronic illness.
And to clarify what I mean by holistic, I'll post the definition.
holistic – Emphasizing the importance of the whole and the interdependence of its parts.
————-
A sort of unrelated note:
The closer I get to wellness, the harder it seems to actually get there. Have you noticed this?
>Bob,
I guess one can only know when people actually try the anti-retrovirals for a long period of time as Dr. Deckoff and her daughter are doing. From the moment one can count the viral load before and during the treatment, we would have a better idea of what it is doing to the virus, ergo the body. If you are positiv for a retrovirus the only thing that will make a difference is to fight the virus. What you are doing is patching yourself up and fight the symptoms. These are two completely different things.
Thank you Dr. Deckoff for the summary. I'm gonna print it and show it to my lovely GP. Another woman with balls ;-)
>Actuallly, no.
I have used and am using protocols that have eliminated AIDS.
Of course, because of what the authorities continue to tell us, we don't think such protocols exist. The suppression of information over the years was successful (even though you can find this information), and only the fringe minority knows that it's possible to eliminate AIDS. When you tell people this information, supply them with lectures, lecture notes, patents, lab evidence, and more, most people don't bat an eye. They'll remain skeptical because they never heard it was possible to eliminate AIDS. It confused me at first, but then I realized skeptics will remain skeptical until government authorities and high profile medical journals tell them otherwise.
However, it is now known and accepted by some doctors that GcMAF eliminates an active AIDS infection. No, it's not getting widespread recognition or media attention, and everyone else is still focused on "searching" for the cure, and organizations are still more than happy to take your money in hope to find a cure.
Using HAART in the treatment of AIDS is potentially dangerous and at the most, it suppresses symptoms. I am not sure if it's the same for XMRV and related viruses.
>Thanks for the blog post. It is clarifying.
I am curious how you define a crash or what the symptoms are?
Two other comments: Did you see the IOM new recommendation for Vitamin D? They clearly feel high amounts can be dangerous and supposedly optimal blood levels may be higher than necessary.
Secondly, taking hormones and concentrated curcumin post menopausally is possibly risky. Hormones in any form are tumor promoters. Curcumin contains plant estrogens. A close look at the literature on both soy and resveratrol shows tumor promotion. Together you may get greater potency.
To Bob: glad you're better but what was the protocol?
>I agree with Esther. If Bob finds he has XMRV, he will probably change his tune when he experiences the inevitable irreversible crash/recurrence when he finds that all the remedies he assumed were "working" have stopped "working" and he was actually just experiencing a remittance. Just give it time!
This is like telling someone with AIDS to treat their disease holistically instead of with antiretrovirals and then commending them for not poisoning their bodies while they die. Dangerous, evangelical nonsense!
Thank you, Jamie for summarizing yours and Ali's treatment experiences here for those of us who are finding themselves organizationally challenged. I found it extremely helpful.
Susan
>I hope you are soon well enough to resume practicing medicine. I would like to be your patient!
Thank you so much for sharing your couragous journey with us!
>I have been treating the retrovirus the in the same same ways you would naturally defeat AIDS.
I had a post about it, but even though I didn't include many details, it seems that these kind of comments are not welcome here.
>Bob,
The problem with your post is some of us have tried "everything" and this blog is a new way of doing things. I'm very grateful to Dr D-J for sharing this with us.
I am XMRV+ and have tried the methods you use. B12 in the 80's and no better. It didn't help me. I started off with the holistic approach and it took a long time to stop doing so. I therefore need to find new things to try.
It's been over 25 years of trying other treatments and they have failed. I've been very thorough in my approach.
If it was as "easy" as you think that it is we would not all be so disabled and for so long. The methods you describe have been tried before.
For those of us who have experienced these methods to fail Dr Deckoff-Jones gives us hope. You don't because you are offering up the same old methods that didn't work for me.
My friends who tried to treat HIV/AIDS as you do all died.
I hope that you continue to find an improvement. I don't care what method works for me. I just want one that works and if it is pharm drugs I don't care.
Why does it matter which approach we try as long as it works?
>Bob, for all practical purposes, Jamie and Ali actually are on a stepped-up version of Rich van Konynenberg's methylation protocol (taking Deplin and B12 injections).
Would they be doing as well with just those supplements, without the ARV's? Based on what they've reported here, that seems doubtful.
Might those supplements be helping them to improve and possibly maintain those improvements into the future? Based on the reports here, that does not seem implausible.
Perhaps the key to pursuing wellness effectively is to take all the tools that we have at our disposal — pharmaceutical and "holistic" — and put them together in the right ways.
This is a really complex disease (apparently much more so than AIDS), and so it wouldn't be terribly surprising if a complex solution were needed.
>People should be able to do whatever they want. If they want to take this or that drug, or this or that supplement, that should be their choice. I don't care what approach people take. It's their body, not mine.
Maybe I am one of the few that saw amazing improvements from a methylation protocol. I respect Rich, but I didn't follow his or Yasko's protocol. The doses were too low to have any noticeable effect, and quite frankly, despite what medical literature states, I don't feel anything from sublingual B12, while I feel pharmacological like effects from methyl B12.
I know the trend right now is hydroxy B12, but I prefer active methyl B12 because it works for ME. Instead of a 2 mg dose, I took 25 mg injections daily.
When I started, I got several viruses in a row, I got a double ear infection, a sinus infection, and my scalp literally peeled a layer. I hadn't got sick in years, but after a few weeks, it was clearly evident that my own (custom) methylation protocol was very powerful for me. I didn't take such a large dose of Folate, and I didn't feel that a Deplin type dose was necessary. And no, Deplin doesn't work by increasing the effects of antidepressants.
Note: Some AIDS patients used a methylation protocol.
A novel antiviral strategy for HIV infection:
http://linkinghub.elsevier.com/retrieve/pii/030698779390134C
I am Zinc deficient and I do have kryptopyrroluria. I am not psychotic, but I do have anxiety and I get occasional rage episodes that are completely out of character. I'm hoping that treating it will help my immune status. There was quite a bit of research in the 1970s.
Coincidentally, research slowed down when some new antipsychotics and other drugs were gaining popularity.
References:
http://www.nature.com/nature/journal/v224/n5221/abs/224811a0.html
http://riordanclinic.org/research/articles/89024739.pdf
Now, even though it was very powerful for me, I wouldn't say that my methylation protocol has been the most effective out of anything I have done. Most of the credit would have to go to colloidal silver. I had much difficulty tolerating at first as I could only take a quarter teaspoon. It took me 3 or 4 months until full doses were easily tolerated.
IV antibiotics have been very helpful, but I use antibiotics cautiously to avoid systemic candidiasis and complications like C Diff. I know to always take an anti-fungal, probiotics, and florastor when on them.
When this detox I am going through slows down more, I plan to start ozonated water and Rizols. I am currently on some antibacterial and antiviral herbs. If progress goes stagnant, I am thinking about purchasing a HPMP.
My acquired infections seem to be primarily bacterial and parasitic. Out of my thousands of dollars of testing, I do not have any chronic or reactivated viruses that I know of. I never had common reactivated viruses such Epstein Barr or HHV-6. I was never exposed to Epstein Barr and my titers for HHV-6 or normal.
>Note: after about 4 months and some detox treatments, I graduated from my methylation protocol. I felt I no longer needed it.
I still take B12, Folate, and P5P every now and then, but not on a regular basis. Maybe I should continue on lower doses, but I don't physcially feel the need.
>I am Zinc deficient and I do have kryptopyrroluria. I am not psychotic, but I do have anxiety and I get occasional rage episodes that are completely out of character. I'm hoping that treating it will help my immune status. There was quite a bit of research in the 1970s.
Coincidentally, research slowed down when some new antipsychotics and other drugs were gaining popularity.
References:
http://www.nature.com/nature/journal/v224/n5221/abs/224811a0.html
http://riordanclinic.org/research/articles/89024739.pdf
Now, even though it was very powerful for me, I wouldn't say that my methylation protocol has been the most effective out of anything I have done. Most of the credit would have to go to colloidal silver. I had much difficulty tolerating at first as I could only take a quarter teaspoon. It took me 3 or 4 months until full doses were easily tolerated.
IV antibiotics have been very helpful, but I use antibiotics cautiously to avoid systemic candidiasis and complications like C Diff. I know to always take an anti-fungal, probiotics, and florastor when on them.
When this detox I am going through slows down more, I plan to start ozonated water and Rizols. I am currently on some antibacterial and antiviral herbs. If progress goes stagnant, I am thinking about purchasing a HPMP.
My acquired infections seem to be primarily bacterial and parasitic. Out of my thousands of dollars of testing, I do not have any chronic or reactivated viruses that I know of. I never had common reactivated viruses such Epstein Barr or HHV-6. I was never exposed to Epstein Barr and my titers for HHV-6 or normal.
>Hello there,
I do want to finish reading this entry but unfortunately I cannot right now. However! I did notice that you were potentially wanting a better ability scale? I just had to figure this out for myself last night, so I wanted to show you the Hummingbird Foundation’s M.E. Ability and Severity Scale. It lists cognitive, physical, and symptom severity in three different parts (which is helpful because we often have different levels of ability in each of those categories–for example, i'm much worse off physically than I am mentally, in comparison at least). Good luck and perhaps you'll find it helpful. =)
>Hi Bob,
I'm currently working on a project with Keith Berndtson, a Chicago-area physician, related to the topic of profiling people who have recovered from severe longterm ME/CFS to "more or less" full wellness.
We're not looking for people who are "cured" (there seems to be no such thing in this disease so far), but who have recovered to the point of being able to live active, productive, functional and rewarding lives.
Hopefully learning more about their experiences will allow us to gain a better understanding of the illness in general, thus allowing more people to move toward wellness.
If you feel that our description of "recovered" fits your experience, would you be willing to talk with me?
Also, if anyone else reading this would like to share the details of their own recovery — or can suggest anyone else who might be willing to participate — that would be wonderful also.
Jamie and Ali, thank you for continuing to share your experiences in this blog. Obviously it would be a lot easier for you to move toward recovery privately…..it takes a lot of grit and determination to put your experiences out there for everyone to comment upon. I'm really glad to see both of you doing so well, and am looking forward to more reports as you chart your progress.
Cordially,
Lisa Petrison, Ph.D.
lisapetrison at ya-hoo