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| | From:  JamieDH4 (Original Message) | Sent: 4/15/2007 6:22 AM |
Hans-
I know I brought this topic up before, but I never got around to asking the question properly.
My long term boyfriend is "HIV+". No one knows except for me, and the person who gave him his results at the anonymous clinic. So for all intents and purposes his is "HIV-" to the world including his doctor, his health insurance company, etc.
The stress of the "diagnosis" is absolutely killing him though. He is so depressed its aweful. He just is getting worse and worse depression wise.
He has been trying so hard to "serorevert", back to testing negative but has thus far been unable to do so. He is not sure if he believes HIV causes AIDS or not. I have atleast convinced him that its not a 100% gaurantee that he is going to die from AIDS and that there is controversy surrounding HIVs role in AIDS. The stress of the diagnosis is just killing him though, he is just so afraid. He feels that testing negative would be the biggest burden lifted off his shoulders. He just wants to test negative once and then he will never get tested ever again he says.
I was just wondering if you thought that the diet you talk of could cause someone to serorevert, just for the purposes of relieving the stress I guess. He is aware of the fallisies with the tests. but it really doesn't matter. |
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Here are some questions:
How old is he? What is his medical history like? Has he ever gone on rigid diets, or taken supplements? Did he ever live a "party" lifestyle? Has he had blood transfusions? How would you describe his sex life? Has he ever exercised strenuously? Are the symptoms you described constant, or does there appear to be a trigger of some sort? How long have these symptoms been present? Did they all start at about the same time? Is he eating enough calories and quality protein at this point? Did he do a stomach acid test? Do his joints swell when it's cold or is there only pain? Are his joints painful to the touch or only when he moves them? I'm sure there are other questions that should be asked, but we can start with those,
It sounds a bit like people with "chronic fatigue syndrome" - does he ever have bouts of fatigue? Do you think he has AA in cells, judging by the diet he was raised on? Has he tried elimination diets, to see if he is sensitive to something like gluten? Has he been tested for EBV antibodies, and if so what was the result? What about Lyme disease? Let's start with these and if you can think of anything else, by all means let me know. |
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“How old is he?�?BR>
21, just like I am.
“What is his medical history like?�?BR>
No medical problems to speak of, other then “HIV�?and his “progression to “AIDS�?
“Has he ever gone on rigid diets, or taken supplements?�?BR>
Other then your dietary protocol, no. He was quite heavy when he was 13-14 years old, but has been about the same weight and height since he was 15. He is within 5 pounds of the weight he was then.
“Did he ever live a "party" lifestyle?�?BR>
No. Never.
“Has he had blood transfusions?�?BR>
No. Never.
“How would you describe his sex life?�?BR>
He has had one bout of chlamdyia which was treated with a course of antibiotics.
He was, at one point, the “passive�?receiver of receptive anal intercourse. It usually was “protected�? but he went through a period of time where it was always unprotected with many different partners, but has since stopped this practice for over a year.
“Has he ever exercised strenuously?�?BR>
Yes. When he first found out he was “HIV+�?he immediately went on Dr. Mercola’s dietary plan and began doing huge amounts of exercise 4 days a week, as reccomended by Dr. Mercola.
“Are the symptoms you described constant, or does there appear to be a trigger of some sort?�?BR>
They are there pretty often, but sometimes they disappear completely for weeks at a time with no apparent reason why. Sometimes the brain fog just seems to go away, and then come back after weeks of being gone.
“How long have these symptoms been present?�?BR>
The brain fog has been for the past two years, ever since his HIV diagnosis. His doctors say that he is not developing neurological complications from HIV and that it is likely due to his extreme mental stress.
His sleep quality has been very poor since about February or March. He sleeps maybe 5-6 1/2 hours a night, and wakes up feeling tired, but unable to go back to sleep. He tried prescription sleep aids for awhile, but they made his “brain fog�?even worse, and did nothing to improve the quality of his sleep. He was still tired all the time.
His appetite has gradually gotten poorer and pooer, as he has gotten more depressed. He says food doesn’t taste good to him anymore.
He has always had this problem with his joints, where when it is cold they ache very badly.
He had diarrhoea for about a month, starting in April, but it has since resolved.
“Did they all start at about the same time?�?BR>
Things have been getting progressively worse for him since he was diagnosed two years ago. These current symptoms were there before but not to the degree that they are now. In February is when they all started to the extreme they are now. He was put on a course of steroids (prednislone) as “just in case�?because the doctor thought he had a possible autoimmune disorder, and thought it was best to get him on medication as soon as possible “just in case�?
“Is he eating enough calories and quality protein at this point?�?BR>
I would say, most definetely not. I have to almost force feed him. He has very little appetite and only eats because he knows he has to in order to live, and not because he wants to. I try making him nutrious meals, and it helps some but he still has no appetite.
“Did he do a stomach acid test?�?BR>
I don’t know what that is, nor does he. So I don’t know if he has done it or not and just didn’t know what it was called.
“Do his joints swell when it's cold or is there only pain?�?BR>
Just pain.
“Are his joints painful to the touch or only when he moves them?�?BR>
Both. This past winter I forgot to turn on the heater one night and our apartment got very cold. When he woke up early in the morning his spine hurt him a lot, as well as his knees, wrist, and jaw.
“Do you think he has AA in cells, judging by the diet he was raised on?�?BR>
Very likely, yes. He has been following your protocol for awhile, as strictly as he can, but the problem is that his appetite is so poor that when he gets a craving for a food he just eats it whether it is good for him or not.
“Has he been tested for EBV antibodies, and if so what was the result? What about Lyme disease?�?BR>
No, for the EBV. Negative for the Lyme. |
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So did he start taking drugs for "HIV" recently, or did he switch drugs? If he switched, what was he taking before?
How long did he do the strenuous exercise? How long ago did he stop?
Does he have fungus on his tongue - did his doctors say anything about Candida infection?
The stomach acid test I did was to start with a small amount of a betaine HCl supplement, around 400 mg., in the middle of a full meal. If you feel burning or warmth in the mid section, you drink some water - that means you have enough stomach acid. I was able to use to method to gradually taper off, going from nearly a full gram of it to none now. However, it does not sound like he is eating enough to even do this now.
I remember telling someone quite a while ago that people often get fed up with their doctors, but at that point they are in poor health, and then they dabble with "alternative medicine," trying a little of this or that, without really listening to what they are being told, and following that for a few months. It seems to take about three months to resolve a lot of problems, though if low in stomach acid, that can be resolved quickly. In my case, it took the stomach acid, a lot more protein in the diet, and a few months to clear up the severe osteoporosis, however.
I think what happens in cases like this is that because of the AA in the person's cells and also things like passive anal intercourse without condoms, there is the Th1 to Th2 shift. This means his "immune system" gets prematurely aged, and like many old people, he is susceptible to certain kinds of "germs." There may be a point at which nothing can be done to restore normalcy, even in the young and healthy, but it also may be rather simple and quick to "cure," if the right things are done (and other things are avoided). With him going on the drugs now and also not eating much, I would fear the worst, unfortunately.
When I was in bad shape, my relatives tried to tell me to do things like get a colonoscopy, but I feared getting an infection from it, and didn't think it would make a difference, since I had the upper GI series done and it was fine - the problem was not in the large intestines. I decided to take matters into my own hands and hope that I could figure out what was wrong, even though at 5'9" tall I was well under 100 pounds at the time and looked emaciated. Sometimes it's better to let people do what they feel they must, because if you tell them to do something different, they rebel against it. On the other hand, if you say that you are there to help, and that if they want to try something new you will help them think it through, it may only be a few days or a couple of weeks before they ask your advice. |
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"So did he start taking drugs for "HIV" recently, or did he switch drugs?"
He just started taking the drugs two days ago. His doctors are very willing to work with him on what medications he is willing to take and not take. When I go in with him for his visits I asked the doctor about the possibility of "TNF-alpha blockers" that they tend to use for autoimmune arthritis. I have read a little about their use in "HIV", and there is a lot of science saying that "HIV+" have too much expression of "TNF-alpha". His doctors agreed to put him on TNF blockers when his viral load is supressed. He does not need to take combination therapy if he does not want to, and his doctor says he can just take the protease inhibitor if he wants after 3 weeks of taking the NRTI.
"How long did he do the strenuous exercise? How long ago did he stop?"
He did it for about 6 months, and it was extremely strenous. :-( That's the problem with listening to quacks like Dr. Mercola. In about March of 2006 is when he stopped, thats after he found "Ray Peat's" website. Ever since reading Ray Peat's website in MArch of 2006 he has been restricting his PUFAs and taking 1,300 mg of aspirin. He does "very light" activity now, such as walking the dog and running errands. No more strenous exercise.
"Does he have fungus on his tongue - did his doctors say anything about Candida infection?"
Nope, not at all. The doctor was amazed at how healthy he appears to be for having CD4 cells so low. No inflammed or enlarged lymphnodes, or anything. Thats why I asked if it was possible that the low CD4 count might not indicate something bad, but possibly something good. |
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Now I'm thinking this is more like "chronic fatigue syndrome," except that he may have more of a Th1 to Th2 shift than is common in CFS, perhaps due to the anal sex.
I suggest you and he read the following:
http://www.immunesupport.com/chronic-fatigue-syndrome-causes.htm
A major problem is that there is just no way to know what is best. For example, taking "anti-virals" for a couple of weeks may be good, but only if followed up by doing things thereafter. I personally would not take that much aspirin - for a young person, my sense is that just avoiding the PUFAs and too much cooked meat, etc. is the best idea. Another thing to do is to take an orthostatic hypotension test. Just take his blood pressure and pulse after he's been sitting with his legs elevated for at least 20 minutes, then have him stand for 4 or 5 minutes and take them again to see if there is a difference. After reading the web page I cited, let me know if that is consistent with what you have observed. |
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Also, there is this interview:
http://www.co-cure.org/cheney.htm
It contains the following:
QUOTE: ...the syndrome we call Chronic Fatigue Syndrome probably belongs to a larger subset of disorders known as post-infectious or post-viral syndromes, at least in a hefty subset of patients, perhaps 60-70% who were perfectly healthy until one day they come down a flu-like or mono-like illness and aren't the same thereafter. There's a smaller subset that have more insidious onset and they represent a different type of illness, but the majority of patients appear to be a post-infectious or post-viral syndrome. In that regard, there's another syndrome known as Reye's Syndrome, which evolves typically in children, although it can hit adults as well, who come down with a viral illness, sometimes the flu, sometimes chicken pox, and are resolving the acute viral syndrome and then take a dramatic turn for the worse almost at the moment they're getting better from the viral syndrome and the disease we call Reye's is characterized by disturbed liver function in the aftermath of the viral infection, that then produces a severe toxicity that affects the central nervous system and frequently death ensues. And Chronic Fatigue Syndrome might be viewed as a sort of slowly developing Reye's Syndrome in that they come down with a viral syndrome and then they emerge from that with a disorder in liver function and detoxification at the cellular level, we think involving glutathione but also other pathways, and that results in a progressive toxification systemically, particularly from the portal circulation similar to Reye's and then a hit to the central nervous system, probably a zenobiotic toxicity to the deep brain structures that gives us the emerging picture of debilitating fatigue, cognitive disturbances, hypothalamic-pituitary-adrenal axis disturbances and severe pain. So, it's sort of like a post-infectious slowly developing Reye's Syndrome as an analogy to another more acute illness we call Reye's Syndrome.
Dr. Mazlen
Now, also, there's a connection here which you make me aware of to the 37 kilodalton variant of the RNase L and I want you to do on and talk about that.
Dr. Cheney
Right, well, that's a really intriguing issue because no one really fully understands why liver detoxification fails in Reye's Syndrome, but in Chronic Fatigue Syndrome there was discovered some years ago by Dr. Robert Suhadolnik that a very significant up regulation in an enzymatic pathway known as the 2-5A RNase L pathway was highly activated in Chronic Fatigue Syndrome. This particular pathway, although a potent antiviral pathway inhibiting viral protein synthesis and therefore viral replication, also inhibits human protein synthesis and enzyme production and could easily be the cause of this liver detox and cellular detox failure in this disorder that sets off this compounded set of problems. Dr. Suhadolnik, a few years after discovering this pathway was highly activated then discovered it was aberrantly activated with evidence of a low molecular weight, 37 kDA protein, kDA simply that as kilodalton, the size of the protein. The normal RNase L is 80 kilodaltons. This low molecular weight is only 37, slightly less than half the size. This could particular enzyme is extraordinarily active, over 6 times more active than normal RNase L and it resists proteolytic degradation and therefore lasts longer in the body and it can really cream protein synthesis and enzyme production and cellular function and from that human function.
Dr. Mazlen
Apparently, it also uses up some of the precursors for glutathione production, is that correct?
Dr. Cheney
Well, it certainly is a rapid cycling enzyme system that consumes ATP by the bucket load, kind of a black hole for ATP, as it were. So, it's a consumer of energy, but most importantly, it impairs enzymatic production in virtually every enzyme in the body. It has a huge, huge effect on human function. UNQUOTE. |
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Another thing you should read is at:
http://www.immunesupport.com/library/showarticle.cfm/ID/3999/e/1/T/CFIDS_FM/
Note that I am not endorsing any particular "treatment," "medicine," or "therapy." It's impossible for me to tell what is wrong with someone who has symptoms of "disease" over the internet, and even if I lived with the person and followed him/her around all day, that person would still have to do everything I advise. Obviously, if this person is in really bad shape, there might not be much I could do, because there might not be enough time to try a few different things to determine what the most significant problems are. And this is why I am suggesting you read this "CFS" material, that is, there is a protocol this Dr. Cheney advises that he claims helps a good portion of his "CFS" patients. This protocol is something that a lot of people might try, as opposed to what I would do, because my approach entails changing one's diet in a way that is too "radical" for most people, while the Cheney protocol is easier for most people, and beneficial results, if they occur, would likely occur sooner. |
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Thank you. I'll check the websites out with him in the morning, and we will get back to you on our findings.
We really appreciate any attempt at help that you give. |
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Found something else, assuming that a Th1 to Th2 shift is occurring (don't know if any lab tests for that):
"Cytokine Th1 to Th2 Shift Can be Reversed by Coriolus versicolor Supplementation."
Prospective Trial for HPV Control with Coriolus versicolor
By Dr. Jean Monro, Breakspear Hospital.
Presented at the 2nd International Symposium on HPV and Cancer, in Lisbon Portugal on May 26th, 2001.
This prospective trial design outlines the rational for the use of Coriolus versicolor supplementation (3.0 grams per day) to improve the immune system in HPV infected women in order to control the stage of HPV development. Dr. Monro is the first to suggest that Coriolus versicolor supplementation may reverse a Th1 to Th2 shift in the immune system.
To contact Dr.Jean Monro at Breakspear Hospital
Tel:44-1442-261-333 / Fax:44-1442-266-388
This substance is a mushroom extract and can be purchased readily, from what I see from basic web searches. I don't know if I would use it, to be honest, but my guess is that it would not be dangerous if taken for a couple of weeks at the lowest suggested dosage. |
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Hans-
Maybe you didn't see the question, so I'll ask again.
Is there any possibility that a low CD4 cell count is not indicative of something "bad"? Could it be natural? Could it even possibly be "good"? The Perth Group doesn't seem to think it is a good indicator of health or immune status. It's just a surrogate marker, after all. |
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From what I understand, you can get life insurance if you have "low CD4s," as long as you are "HIV negative," which, if true, is a good indicator that "low CD4s" is not a good indicator.
In my research, I've come across all kinds of indirect markers. For example, some have claimed that high SOD levels is an indicator that a substance "stimulated antioxidant protection," and is therefore "beneficial," when in fact this indicates that the body is trying to protect itself from a dangerous substance. If you read the long thread on the "HIV/AIDS debate," you probably already know that there is a good explanation, and that is that T reg cells are inhibiting CD4s. The question is why?
If you go to wikipedia.org, you can see the explanation:
QUOTE: ...During an immune response, professional APCs endocytose (absorb) foreign material (typically bacteria or viruses), which undergoes processing, then travel from the site of infection to the lymph nodes. Once at the lymph nodes, the APC begins to present antigen peptides that are bound to Class II MHC, allowing CD4+ T cells that express specific TcR's against the peptide/MHC complex to activate... UNQUOTE.
However, if there is too much of this, then T regs have to clamp it down:
QUOTE: ...Regulatory T cells (also known as suppressor T cells) are a specialized subpopulation of T cells that act to suppress activation of the immune system and thereby maintain immune system homeostasis and tolerance to self... To function properly, the immune system must discriminate between self and non-self. When self/non-self discrimination fails, the immune system destroys cells and tissues of the body and as a result causes autoimmune diseases. Regulatory T cells actively suppress activation of the immune system and prevent pathological self-reactivity, i.e. autoimmune disease... UNQUOTE.
Sources:
http://en.wikipedia.org/wiki/T_helper_cell
http://en.wikipedia.org/wiki/Suppressor_T_cell
My guess is that if you have "low CD4s," and are fairly young and/or healthy, you can get them to higher levels over the course of perhaps a year or two, but it's important to do everything right, that is, get the AA out of your cells, don't exposure yourself to excess foreign antigens, etc. |
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Hans-
Here is what's what.
He has been on these drugs for a few weeks now, and is actually feeling much better. His only symptom of "HIV" (aside from other symptoms which would not be attributed to HIV otherwise) was the fatigue. The fatigue has been lifted he said. He thought he was going to go off the drugs after a month, but now he is not so sure.
For once he has hope to live, and I am so happy for him. We know that the drugs are toxic, but what else is there? Do you have any suggestions for off setting any damage the drugs might do? |
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| What you can do is to read about the drugs he is taking, and try to determine what might be a good idea. Keep in mind that this is not uncommon. He obviously had some dysfunctional biochemistry before, and after taking the drugs, he altered his biochemistry. I have had similar experiences, especially when I stopped eating all products containing gluten. I felt like never before - much more energized - for about 2-3 weeks, then things went back to normal. If I were in his position, and know what I know now, I might take the drugs for a couple of weeks, but at the same time refrain from all known stressors. My guess is that organic, lightly roasted coffee would be good (with no milk added), along with white tea. You already know about the food, but a recent study suggested that grapes are really good, so either red grapes and/or raisins - try to get organic ones. |
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Unfortunately, Hans, the problem with your diet is that it takes 2+ years to produce any results, and when someone is feeling miserable for 4+ months they don't want to feel that way for another 18 months.
He is avoiding as many stressors as possible, but the drugs really help. I have done some research and it appears protease inhibitors are very strong anti-inflammatories. In Ray Peat's articles on "HIV" he talks a tiny bit about HIV drugs, but mentions only that PIs might have benefits due to their inhibiting tissue destruction. |
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| With chronic inflammation, there can be destruction of healthy tissue, so the PIs could help there, but I remember one doctor or scientist point out that there may be gastro-intestinal problems, leading to malabsorption, so taking digestive supplements might be a good idea. Different cells types loose their AA at different rates, so 2 years is the "long" end. As I said, I might take these kinds of medications for a short period of time, but I would try to "cure" the underlying problem, rather than hoping that I could live for many years on a medicine that disrupts normal biochemistry. Everyone has to make his/her own decision, of course. |
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