7 months

It feels like we’ve dipped a little and then plateaued. Not in any way crashed, but our physical resources are more limited than we would like. It still feels like HAART is working for us, but may not be enough for full function. We are vastly improved from 7 months ago when we started treatment, but are not fully recovered, though I had similar thoughts a couple of months ago and then we started uphill again. So it would appear that progress is not entirely linear.

We have both had to back off a bit because of physical limitations and a desire to work with the drugs and not against them. The absence of relentless pain and a little energy can really go your head, let me tell you. It is easy to forget that it is necessary to take care. The disease still rears its ugly head with unfortunate regularity, but its power is significantly blunted.

Ali will tell her own story soon I’m sure. A couple of weeks ago, I started having more sleep problems again. Sleep disruption is a sentinel symptom for me. A bad night’s sleep is generally followed by a sick day. Chicken or egg. A few days into it, I realized that I had let myself run out of Deplin by mistake. When I restarted it, things improved again. In my excitement to have discovered how potent it is for me, since I didn’t notice much going on it, and because it has been so obviously important for Ali, a trial of higher dose, 15mg, seemed like a good idea. It disrupted my sleep completely, so I went back down, but things have not yet settled down all the way. The other possible contributing factor was a change from a brand Estrasorb to a compounded estradiol cream. My sleep is completely dependent upon adequate estradiol, so I’ve switched back to what I was using before. The last couple of nights have been better, but not yet good again. My symptoms are subsiding as the sleep issue improves.

My recent experience with Deplin has led me to read more deeply about the methylation cycle to try to understand why l-methylfolate supplementation might be so important. Our current drug regimen can do nothing about existing integrated virus, which can be transcriptional or silent. It is unlikely we will be well unless the virus can be silenced. Take a look at this paper: (Blaskova/Hirsch). They found that the latent reservoir in HIV infected individuals without viremia had hypermethylated HIV-1 promoters that are resistant to reactivation in vitro, as opposed to viremic patients with hypomethylated 5′ LTR.

We have both begun weekly injections of B12 (hydroxocobalamin), 10mg IM, and a multi which includes B complex. The vital cellular functions that are dependent on the B vitamins require an adequate supply of the complex.

I am having an exacerbation of muscle weakness and a feeling of lactate build-up that could be related to adverse effects of AZT, though it goes up and down with all my other symptoms; if it were an adverse drug effect, I would expect it to get steadily worse, not wax and wane. In addition, there are a couple of patients who write to me who are having problems that could be AZT related or exacerbated. It is unfortunate that drug choices are so limited. Ali still has not experienced any problems at all attributable to the drugs. I would like to point out that I do not feel in any danger. If I have to, I’ll stop the drug, but I want to stay on it and will push through if I can until I know more.

Presumably integrated virus is still transcriptional. The negative testing for the protease inhibitors against X is unfortunate. The PIs interfere with the assembly of new viral product. A PI is necessary for complete blockade. There is a tiny amount of evidence in the literature that MLVs are inhibited by the PIs amprenavir and indinavir (Powell/Otto, Feher/Tozser). It is possible that XMRV protease differs from that of HIV too much for the drugs to have an effect. It is also possible that there is a problem with the testing of the entire class of drugs to date. In addition, one might speculate that even if X is not inhibited by the existing PIs, P might be, given that there is apparently activity against MLVs. We are considering our options.

For me, being better enough to enjoy myself is almost an ecstatic experience. I really didn’t expect to get better. Nothing in my years as a doctor had led me to believe that my illness would do anything other than continue on a downhill course. The story of HIV, at least in this country, is a hopeful one for us. The AIDS patients who died in the early years missed the benefits of the unfolding science, but most of us will still be around to see it, our disease is so slow. The trick for us will be to go on with the time we have left and not be anchored by anger and loss. There is redemption in forgiveness. Much has been lost, but there have been gains as well. Many of the people writing to me are struggling with or have mastered acceptance of very difficult realities. When released from the prison of illness, that wisdom and compassion will be a force to be reckoned with.

I have set up an elist for patients who are taking antiretrovirals and prescribing physicians to share treatment experiences. Caregivers are also welcome. If you have started or prescribed treatment, please contact me if you would like to be included: jdeckoffjones@gmail.com

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9 thoughts on “7 months

  1. >Following your anti-retroviral treatment has been fascinating, even though I don't understand all of the medical terms here!

    It's the same with me and the sleep dysfunction – it gets worse when my other symptoms do – one of the ironies of this illness that the more you need good sleep, the more elusive it is.

    I agree with your last statements abut acceptance and forgiveness. I try not to waste my valuable and limited energy on anger.

    Thanks for keeping us all informed – you're doing a valuable service!


  2. >I have not heard about Deplin or Estrasorb! I love it when I hear of optional solutions I might try if required in the future.

    I have always been against taking hormone treatments. It just never seemed right to try and fool Mother nature. And I had a nasty relapse after a trial of thyroid replacement supplements. So, I do wonder, since it has been said somewhere (I forget where), several times, that hormones have the affect of waking up XMRV so to spak, if taking estrasorb might do this as well?

    Not really asking a question as much as just tossing out what's in my brain. I'll go read up more on Estrasorb, and I probabaly will be able to answer my own musings.

    Thank you Jamie for giving us a continued glimpse of the ups and downs of daily life on XMRV +ve and HAART.

  3. >Jamie, I appreciate your comments about anger, loss, acceptance. I am so new with the disease (EBV onset, XMRV neg in January, culture pending). Every hour of my day is focused on advocacy, finding a doctor, getting a doctor to follow Dr Klimas' recommendation, finding a way to get the government to listen (they should probably remove the cotton balls off their ears). Anger fuels stress. Stress fuels my disease. It's really hard to let go and just wait, because, how long are we going to wait?

    Acceptance… How can one accept to be housebound with no contacts, for the rest of their days, with financial uncertainties, and no care? Yet my peers that have been ill for decades have done it.

    Frustration… of letting go of an active and successful lifestyle, and watching "the biggest loser" and "survivor" instead (pun intended)

    Frustration of trying to convince doctors that "sore lymph nodes", viral reactivations, POTS, low NK cells, Cytokines totally gone AWOL are not a result or a cause of depression. Heck, the infectious disease doctor at the HIV center of excellence doesn't know what to tell me.

    Frustration to see the history of the disease since the mid 1980's and how it perpetuates itself at the CDC, in the UK, in Canada, and how all the doctors in the world rely on the CDC to tell them what to do- including for CFS.

    I hope to get an opportunity, one day, to be treated just like someone that have HIV, cancer, diabetes, erectile dysfunction, or alcoholism. Because all of these disease get more respect than we do.

  4. >Dr. Deckoff-Jones, I would be very interested to see if you could mitigate the lactic acidosis symptoms you're having (i.e. muscle weakness) using NT Factor (what Nicolson has studied in CFS and in chemo patients), the supplements Myhill uses for mitochondria (the classics: CoQ10, carnitine, ribose, etc.), or cordyceps — I have found high doses of the last one to be helpful (cordyceps has shown benefit to the mitochondria), but I'm talking cancer patient doses and not the lower doses ME/CFS patients typically take.

    I think this would be useful to try, since the question of serious mito toxicity has been raised with AZT use in this illness, and it seems if we could override that danger it might enable patients to try AZT with fewer worries.

    I am wondering if you or others on antiretrovirals are testing lactic acid levels in the blood as they do in AIDS when muscle weakness and other lactic acidosis symptoms creep up — this would be a good way to measure if you could work with this problem (i.e. through supplementation) rather than just stopping the drugs in the case of mild or moderate lactic acidosis.

    There is at least one DAN doctor using methylcobalamin injections to improve methylation (I know there are possible dangers with mercury that should be considered) — I have found methylcobalamin injections to not only help with the methylation issues but also to help with sleep.


  5. >Thank you for the continue of updates. I was tested today and will keep up with the site.

  6. >My 27- year-old daughter is not yet on ARV tx. She has been dramatically improving with the "Dr.Lerner-type" approach using long term tx with Valcyte. She was bed-bound for four years with severe pain, deep head aches and the rest. She is now operating in a holding pattern with about 50-60% improvement in her fatigue and 90% in pain. The interesting thing is – she doesn't crash below that point with exertion the way she always did before the Valcyte. Also, she takes Provigil 200-400mg Qam to get out of bed every day. Her sleep dysfunction has dramatically improved. Also I think it has been helpful to support her immune system of glutathione, coQ10, vitAMINS C & E, B12 inj. and to manage the symptoms of her HPA axis dysfunction -especially reverse T3. Any feedback would be welcome .

    I monitor your posts religiously and have great hope for your recovery. It was very near to me to read about Ali's progress. Thank you for the posts. They are very important to me.

  7. >I have severe CFS and began treatment in February . Dr.,Jones I wonder if all are responding this way or if you know some that just recovered immediately anything they lost from the disease and are back at work , school etc. Is it that the longer you've been sick the more complications there are from other infections on your immune system? In HIV for example do AIDS patients that start the drugs later in the illness not do as well as someone with HIV . It seems as though AIDS patients bounce back too. Why isn't this the case with CFS? Ehats different about us?

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