Here's just a short update on my experimental treatments. It has been just under a month since I started NAC, AHCC, and Beta glucan; about three weeks since starting Echinacea, and I'm on Isoprinosine again after a one month break (I don't think I'm going to take any more breaks).
Unfortunately I actually had to stop the NAC. I understand that you are supposed to take it with Vitamin C so it doesn't oxidize, but I can't tolerate Vitamin C very well. It gives me agitation, restlessness, insomnia, anxiety, and the like; even in very modest doses such as 250mg/day. I have no idea why this happens but it's quite inconvenient.
Everything else is going well although I did have a few bumps in the road. The first week I began the immune modulators, about a few days after I started, I strangely developed a sore throat, probably the most severe one I've had in at least a year (and I wasn't sick, not around any sick people--or any people period for that matter--so wasn't the reason). It started off mild and increased in severity each day, and just as it was hitting its peak on the fourth night or so, it disappeared the next morning and was completely gone. So that was weird. A week later, I think a few days after I started the Echinacea, I had extreme flu-like muscle fatigue and achiness and just felt terrible in general, but that also passed after a few days. Around this time I think my spleen may have been inflamed because it hurt if I tried to sleep on my left side, and although it could have been something else--don't know what--but that too went away after about one week.
By now it seems like everything has equalized and I think I actually feel a little bit better than before I started. I'm planning on upping the doses to 3000mg of AHCC per day (which is going to be expensive) and increasing the echinacea to an extra 3 capsules per day as well (which is the cheapest thing in my plan). I'm already at the maximum recommended dose of beta glucan. We'll see how it goes.
By the way I found a cheaper source of AHCC at betterhealthinternational.com. I have never ordered anything from this company before but their prices are really good--it is cheapest if you buy it in bulk powder rather than capsules. This one (NOW brand 2 ounces powder) seems to be the cheapest AHCC I've found online. This particular store carries other brands of AHCC here is a list of all them but some are more expensive than other sources. (If you are looking for something cheap, Google Shopping results help a lot.)
ahcc and beta glucon: are they giving you more energy? can you just mix in water and swish and spit? or do they need to be swallowed.
ReplyDeletethanks for sharing all your stuff, it's great.
regards, lisa
Hi lisa, it is a bit too early to tell. If I have a solid concrete improvement I will write about it, but CFS fluctuates so much it is hard to tell what is helping and what is just normal variation in your symptoms.
ReplyDeleteI have not heard of anyone doing swish and spit with these. I do understand that the active components of these have a very low molecular weight so it might be absorbed under the tongue, but it is normally swallowed, and I don't think anyone has studied sublingual administration of these. I have had very few side effects from AHCC/Beta glucan, so I am not sure what the advantage would be to doing a swish and spit--it seems like it would be a waste. I guess you could swish and swallow though to get the benefits of both worlds.
When I was given Immunovir, I was told to expect feeling worse before I felt better. The viral die-off.
ReplyDeleteNAC makes me very anxious.
Are you varying how you use the Inosine week to week. I'm sure you wrote about that, but I don't have the energy to read your back posts.
Anonymous March 24:
ReplyDeleteYes I am alternating between 3000mg and 1500mg (6 and 3 tablets) of Immunovir each week, on weekdays only. Dr. Klimas did a trial at this dosage for 6 months so I will at least take it that long, or maybe indefinitely. I felt a little bit of die off for a few days but not much, I suspect it would have been worse if I hadn't been on olive leaf for a year (as I had a huge die-off, I think, for the first several months on OLE).
As far as NAC, do you mean it causes anxiety when you take it or do you mean the thought of taking it makes you nervous? I kind of gave up on NAC.
I have CFS for 10 years. For two years I am trying antiviral + antibiotics + immune boosters.
ReplyDeleteI have improved, it has taken a long time, my immune system seems more effective, I am waiting for blood test results to see if abnormalities have decreased.
My advice would be to see a specialist like Meirleir to try to detect infections and immune disorders.
Now here is a list of what I have tested:
- NAC ++
- Acid Lipoic ++ (increase glutathion)
- Glutamine ++
- Ginseng ++
- Lactoferrin
- Allicin ++(help with brain fog but toxic on the long term and very bad for the stomach...)
- Uncaria tomentosa (AC-11) (increase CD4 / CD8) ++ My weight has increased, it has really helped me
- Andrographis: I have had a big reaction (weak, liver troubles,...) , very bad for 2 months, I have read people reporting the same effect when used with uncaria (probably a toxic combinaison)
- Low Dose Naltrexone: very bad, increase yeast troubles
- Amoxicilline ++ it has solved my headache problems
- Acyclovir ++ it has helped with my CMV infection
2 years testing lot of things and 2 months ago I've begun to feel really better.
I am now trying olive leaf like you, It causes me a slight headache and after 4-5 days, I have felt very weak so I have stop for a while...
Aymeric, how much have you improved? Can you say which of those treatments you listed helped the most?
ReplyDeleteOlive leaf is an interesting supplement. As I've written, when I first started it, it was like all hell broke loose. I felt terrible for months. Eventually I improved back to my baseline. Now, if I stop taking it, all hell breaks loose again! It starts about 48 hours after I stop, and once I start it again it takes another 48 hours to feel better. I think it is suppressing a virus, and when I stop taking it, the virus reactivates. And that the adverse reaction when I first started taking it also was a virus to reactivating, because it was threatened or something. But I am continuing with my olive leaf hoping that maybe my viral load is decreasing little by little. If you have trouble taking it, my suggestion is to start with one capsule or even just a fraction of a capsule per day and work your way up slowly. Now that I've been OLE for over a year, it seems like I can take an infinite amount without that herx-like reaction coming back.
5-6 years ago I've begun a low sugar diet and I have removed all the food I was sensitive to: eggs, gluten, fruits... Then I have been able to work again even if I was feeling very bad. Sugar must be avoided if you have an active infection. Each time, I was eating glucose or similar sugars, a sore throat was beginning the next day and I was feeling bad and very tired for 2 days. Studies shows that the immune system gets weaker for hours with fast absorbed sugars...
ReplyDelete2 years ago I've tried amoxicilline + acyclovir to get rid of CMV and Chlamydia infections. I have felt better but infections have come back. Allicin is a good thing with antibiotics to avoid yeast troubles and for an unknown reason it helps me with my brain fog problems and I've felt better.
Uncaria tomentosa has had a huge effect on me; I've removed my infections with it. I use AC-11 which has studies to show it increases CD4 and CD8. My CD8s were far below the normal range. It may come from to an overload of my immune system like all my food intolerances according to my doctor.
NAC+acid r lipoic+vitamine C is a good combo to have more energy and it increases glutathione levels. It is the most and cheapest efficient way to do that. I use that for 2 years now.
Ginseng increases the NK cells activity, I feel stronger with that.
I have taken Mutaflor to solve my bowel troubles and also VSL3 (probiotics) for several months. It is not cheap...
ReplyDeleteLately, I've tested andrographis + uncaria, I was taking a huge dose of both. During one week and half I have been a bit sick then suddenly I've felt very very bad, too weak to wake up. Then I have realised, I was taking several times the maximum recommended dose. I have been very weak for 1 month and half and I have needed 2 month to recover. I have continued with uncaria tomentosa alone.
So 4 weeks ago, I have felt better, my light sensitivity has decreased, my food intolerances, my brain fog too. In ten years it is the third major improvement (1. Diet, 2. Antibiotics+antiviral, 3.Various combinaisons). When I have realised, I was feeling better fighting infections, I have continued this way.
I do not have common CFS abnormalities (RNASE-L), when I have seen Meirleir last year, he has told me my immune parameters are really uncommon and he was thinking I may have a genetic trouble. I have felt sick after an insect bite and a 3-4 days rash. Then I have felt faint for weeks before being really tired, weak and sick with lot of troubles. Curiously my terrible headaches have stopped 2 years ago with antibiotics, so I think I may have something like lyme or a chronic babesia...
I have seen Meirleir again 4 weeks ago, he has asked for a lot of tests: XMRV, lyme + CD57, CMV, Chlamydia and immune parameters to see if it correlates with my improvements. Curiously in 10 years I have never had any fever and at begin my temperature was below the normal range. For the first time since 10 years I have had the flu with some fever, I was far less ill than usual. I have read some advanced research studies which point that the absence of fever can come from a weak or/and deregulated immune system. I was always feeling bad ad worse when getting an infection but with no other sign so I guess my immune system was overloaded.
My advice is to see a real CFS doctor like Meirleir because they can really help you. CFS sufferers can be split in several categories and to recover it is important to find out which one you are belonging. “Normal doctors” are not interested by our cases, they follow the recommendation for EBV and CMV which are to do nothing
For EBV you need to do a PCR to at least see if the virus replicates, if not you probably have another trouble. I have had EBV 6 months before falling sick but it seems I do not suffer from that. I have recovered and was feeling well 2 months before the first signs of my current disease. When I have decided to see an international specialist, I have done the right choice I think. Immune boosters are not harmless, they change the cytokine profile. I have choice them with research articles to be sure it can help. It is possible that the infection continues because you have another infection, immune troubles and lot of other things...
EBV is sensitive to acyclovir, you should see this link http://pochoams.blogspot.com, he is suffering with an active EBV infection (and so much other things!!!), he has also tried labolife products for EBV.
I wait for the results of my last tests, if CMV is active, I will consider other things like Chinese herbs, and they have found very active herbs against CMV. CMV has begun 4 years ago; the first tests I have made were negative.
For supplements, I would like to warm people on:
ReplyDelete- Samento: this uncaria tomentosa supplement is not safe, searching "real posts" on forum, I have seen it has very bad effect which are probably not herx and the science behind it is surely a scam.
- Allicin: it pretends to cure almost everything and you have post of people taking allicinmax. I am using it but it causes stomach inflammation, low blood pressure and in the long term, mostly for animals but also with humans: it is toxic! It has caused a mild anemia on me. There are lot of scams on this product claiming they are using 4-10 pills by day, it is impossible, even they study is a scam (unpublished).
- Andrographis+uncaria: I have seen some posts where people have experienced huge liver enzymes increase. It is adviced by a doctor on internet for lyme but I have been very sick on it.
The fact that you got a sore throat, "the worst one in years" is actually a great sign CFSSince98! It shows the AHCC and others are starting to balance your immune system. The sore throat is a symptom of the way a regular 'normal' immune system reacts when it gets a viral infection.
ReplyDelete