Antiretroviral Trial

[TheMoonIsBlue]

Daffodil, I think you are VERY, VERY brave for what you are doing! I hope everying continues to go well, even with ups and downs..... here's to more UP days in the future!

 

[Daffodil]

thanks a lot, guys. it means so much to have friends who are with me through this.

i forgot to mention something else. as you might remember, over the last couple of months, i had this feeling in my forehead of a tightness, almost like my brain was being "sucked" out - hard to explain. anyway, recently this feeling became more and more intense. it was worrisome - definitely not a good feeling - but now i wonder whether it had to do with virus removal??

my neuro problems were always extreme with the CFS.

 

[TheMoonIsBlue]

Daffodil, have any of your doctors suggested prescribing a prescription NSAID? Or even plan prescription strength IB Profen (advil, motrin). Sounds like you have a lot of inflammation going on. I'm not sure if it would be compatible with your current therapy, but if so....maybe reducing inflammation while the HIV drugs are trying to do so also could be less of a burden on your body?

 

[Daffodil]

hi moon...yes some researchers have suggested anti inflammatories and i did hear someone mention advil (mikovits?)...also celebrex was mentioned by someone.

the reason i am reluctant to be on these is because - 1) i dont want to burden my liver/kidneys even more (at least not until i have to) ..2 ) i dont want the anti inflammatory meds to interfere with the cytokine testing. i want to be able to monitor progress on the ARV's by doing these tests.

thanks, moon

sue
xoxox

 

[TheMoonIsBlue]

Hey Daffodil,

Yes, those are good reasons indeed! I take Advil as my sort of emergency drug, once in a while it just makes my body feel.........better somehow.

P.S. Are you getting the cytokine testing through VipDx? I still have not had ANY immune system tests done and I'm itichin' to get started......but there seems to be so many and so pricy, I don't know which one are essential.

 

[Daffodil]

hi moon. yes i have been getting tested at VIP about once a year for the last few years. this is the first time i have ordered any cytokine testing, though. i usually get RNase L, elastase, NK cell function. it is expensive but i think some people's insurance pays...also they will give you 10% if you are paying out-of-pocket.

i am not sure which tests are essential but i would get the XMRV/MLV serology, NK cell function, and the cytokine panel. i think VIP will be offering moer cytokine testing soon, including MIP-1 alpha, MIP-1 beta, and TGF beta.

i also take advil sometimes if i am having a headache. about twice a week, i take a benzodiazepine if i cannot sleep well or if i have something important to do the next day.

sue
xoxoxo

 

[mojoey]

Hey Sue,

Do you take cortef? Cortisol is anti-inflammatory and also may activate the virus (which ironically may be a good thing if treatment can only reach active virus), so I'm wondering if this would be good to take during treatment. If not, then there are many herbal anti-inflammatory formulas that may be helpful without burdening the liver.

 

[Cloud]

I have always had a good response to anti-inflammatories, but we are limited in what we can safely tolerate. Big gun anti inflammatory drugs such a steroids and Methyltrexate are out for obvious reasons. I do take natural stuff like Circumin...but find it to be very lightweight. To date, the best big gun anti inflammatory I have found is Azythromycin. It seems to target my particular source of inflammation without allowing a greater pathogen activation like some of the other immune modulators might. Of course Antibiotics are not a good long term solution for this purpose either, but I keep it around for PRN (as needed) use. I'm not recommending anyone else try this....it's just something that works for me.
Since I will likely not be able tolerate long term ARV Tx, I think ultimately my treatment will involve an immune modulator/anti-inflammatory, and some kind of natural anti-retroviral Tx. I foresee future treatments tailored to an individuals particular immune dysfunction signature and active infections.

 

[Daffodil]

thanks guys. i have often thought of taking these things but never did. i am glad you found something that helps, though. my doctor is reluctant to prescribe anything else for me right now. i still cannot believe he is letting me stay on the HIV meds. also, i am really interested to see how these meds alone will affect my biomakers.

today i feel a little runned down from the previous days' activities but still OK. strangely, i feel like going outside again (but i won't).

WEIRD!

 

[leaves]

I am so happy your spirits have lifted somewhat
Try to enjoy it !
xoxo

 

[redo]

I have always had a good response to anti-inflammatories, but we are limited in what we can safely tolerate. Big gun anti inflammatory drugs such a steroids and Methyltrexate are out for obvious reasons. (...)

Hi,

I'd really like to hear some about those reasons. I know that long term cortisol use can cause a significant worsening. But I haven't heard of it when it comes to short term use (<1 week). I assume a short course could be useful for those who need to put a dampening to a inflammatory reaction.

I am not saying what's right or not. I don't know. But I would like to hear more of your thoughts about that.

I dug up a abstract where they had somewhat of a positive response, but hadn't got a worsening:

RESULTS: The number of patients showing improvement on the Wellness scale was 19 (54.3%) of 35 placebo recipients vs 20 (66.7%) of 30 hydrocortisone recipients (P =.31). Hydrocortisone recipients had a greater improvement in mean Wellness score (6.3 vs 1.7 points; P=.06), a greater percentage (53% vs 29%; P=.04) recording an improvement of 5 or more points in Wellness score, and a higher average improvement in Wellness score on more days than did placebo recipients (P<.001). Statistical evidence of improvement was not seen with other self-rating scales. Although adverse symptoms reported by patients taking hydrocortisone were mild, suppression of adrenal glucocorticoid responsiveness was documented in 12 patients who received it vs none in the placebo group (P<.001).

CONCLUSIONS: Although hydrocortisone treatment was associated with some improvement in symptoms of CFS, the degree of adrenal suppression precludes its practical use for CFS [adrenal suppression happens with long term use, not short term].

Rest of the abstract.

 

[Cloud]

Hey redo....yea, maybe I should have been more specific with the word "steroids" because I was basically referring to steroids that can cause immune suppression. Cortisol, doesn't cause immune "suppression" until one gets into higher doses and blood levels. Low dose Cortisol supplementation causes immune stimulation and modulation.....but as the dose/blood level goes up, it has a different effect. Where one draws the line between "high vs low" dose Cortisol depends on the level of insufficiency one may have. But I would guess that with a typical pwc having mild sub-clinical adrenal insufficiency, anything over 10-15mg is crossing that line. Prednisone does the same at ~5mg. I was told most of this by an MD...but it also seems to match my experiences with these drugs and life stressors that affect cortisol levels. Bottom line, one has to be really careful with immune modulation in a person with infections brewing.

There is also the issue of supplementing hormones possibly contributing to xmrv replication rates. Yes, that's all anecdotal at this point, but from my own experience with post steroid relapses....I tend to believe it's true. We will know soon.

 

[mojoey]

Hey Cloud,

Thanks for the explanation. I've heard the same number, 10-15mg without suppressing the adrenals. That's an interesting point about them stimulating & modulating at low doses; that makes me feel more comfortable about taking it. However I would feel even better about taking replacement doses if I were on ARV therapy.

 

[Wayne]

Hey Cloud,

Thanks for the explanation. I've heard the same number, 10-15mg without suppressing the adrenals. That's an interesting point about them stimulating & modulating at low doses; that makes me feel more comfortable about taking it. However I would feel even better about taking replacement doses if I were on ARV therapy.

Hi Joey, Hi All,

I consider the book “Safe Uses of Cortisol” by William Jeffries to be the most authoritative literature on low-dose hydrocortisone I’ve been able to find. Dr. Jeffries devoted his entire career to researching and developing a low-dose hydrocortisone protocol for people with CFS, FM, arthritis, post-viral syndrome, mononucleosis, HPA axis dysfunction, hypoglycemia, and many other conditions including infertility. He found even marginal adrenal insufficiency can have big effects. Some highlights from this book:

1. The average body makes approx. 40 mg cortisol/day. If you have adrenal insufficiency, the adrenal glands are constantly trying to increase cortisol levels, and being unable to do so, virtually never fully rest. By supplementing with enough cortisol (Cortef) to bring levels back up to normal, the whole body starts to function better and the adrenal glands get a chance to start resting and hopefully start rejuvenating.

2. The average dose necessary to bring cortisol levels to normal are 20-30 mg per day. As long as you keep the amount below 40 mg/day, your adrenal glands will not shut down, which is a problem with higher dose supplementation. He goes into detail the history of cortisone, and how the initial promise of it became obscured when early high dose supplementation created many of the problems that doctors are currently concerned with. Unfortunately, most doctors know nothing about the safety of lower doses.

3. Cortef / hydrocortisone has the same molecular structure as our body’s natural cortisol. Prednisone and most of the other synthetic “souped-up” products that are often prescribed are on average about 4 times more potent than cortisol. Each pharamaceutical company had to come up with their own unique molecular formula so they could get a patent and get in on this market. Supplementing with these, especially with higher doses, can become problematic on a long-term basis.

4. He has little confidence in any of the current tests to measure cortisol levels, including the Cortrosyn Stimulation Test or the Adrenal Stress Index test. He says our cortisol levels fluctuate too much to get an accurate snapshot of the true status of adrenal function. He instead relies primarily on a patient’s response to a trial supplementation. He starts out at 20 mg/day for about 1-2 weeks. If no improvement is noticed, he increases it to 30 mg/day. If there is still no improvement in symptoms, he usually determines that adrenal insufficiency is not the problem, and takes another 2-4 weeks to gradually withdraw the supplementation. In other words, if you don’t need it, your body won’t respond to it. (For PWCs, I believe a more flexibility interpretation than the above would be advisable).

I’ve been taking 20-25 mg/day of Cortef for over ten years now (double or triple in times of extra stress) and I believe it is the difference between my being about 20-25% functional as opposed to being about half that or less. All the “side effects” have been good. To name a few: better digestion, better stress response, increased ability to relax, better sleep, and more.

I’ve experimented with two other brands of hydrocortisone. I believe one was a compounding pharmacy product and another a brand name I can’t remember. Neither of them were good for me at all (gave me a very disconcerting feeling). Only the Cortef works for me.

My initial dose of 5 mg of Cortef felt like I had drunk too much coffee and went outside and walked like I hadn’t walked in ages. I realize now that my body was so unused to having this degree of energy coursing through my system, and needed time adjusting to it. But gradually increasing the amount over a two week period brought me to appropriate and comfortable levels (20-25 mg/day). I now feel very confident that this is both safe and highly beneficial for me.

I’m aware however, that many PCWs have bad reactions to even the smallest doses of hydrocortisone. This makes supplementation a highly individualized undertaking. As always, proceed with caution.

If I were to embark on an anti-retroviral program (which I hope I won't have to), I would likely start to take extra Cortef because of the extra stress I assume it would bring to my system. This would be in line with my own past experience and along the guidelines of Dr. Jeffries who advocated the same.

Wayne

 

[natasa778]

Daffodil, have a look at this, recommended by a CFS doc as a safer milder alternative to steroids, recommended to all patients taking antivirals.

https://www.innateresponse.com/Adrenal_Response_FAQs.html

 

[aquariusgirl]

Joey

I was surprised you were taking cortisol (cortef? HC? herbals) given that you are XMRV+.

What's your or your doc's thinking on this if u don't mind sharing...

 

[mojoey]

Hey aquariusgirl,

He said my adrenals are burnt out and I needed cortef, regardless of XMRV. I agree. Like Cloud said, a low dose can be stimulating and modulatory. I know Dr. Deckoff-Jones was taking testosterone during XMRV treatment. I was thinking this may have helped tease out the latent virus for the drugs to have an effect on them.

I find it hard to believe that any cortisol is harmful. Cortisol is a necessary hormone in the body with many functions. It's much more likely IMO that the amount released from a particularly stressful episode is harmful versus a low daily dose (I'm only taking 5-7.5mg)

 

[ukxmrv]

I didn't notice any adverse changes to my health after trying hydrocortisone in the 1990's and then trying Cortef a few years ago. Only at low does of 10mg. Didn't notice any improvement in my health either (maybe not enough?) and I lost access to my doctor who prescribed it.

XMRV+

 

[aquariusgirl]

Ok. Interesting. I'm sure low cortisol is partly to blame for my poor sugar regulation issues.

 

[Cloud]

I'm one of the many pwc's unable to tolerate Cortisol supplementation at any dose, regardless of need. Yet...Barring the hormone activation of xmrv theory, I think low dose Cortisol would be helpful for the pwc who needs and is able to tolerate the med because it's involved in so many fundamental and essential functions. It's needed for homeostasis....Chinese medicine has much to say on the adrenals relationship with the life force. I would take low dose Cortef if I could....and believe me, I have tried.