When I complained, (and I assume others did too) they backtracked and said they would go back to the original formula. I pointed out in an email that the new formulation contained greed tea extract, which stimulates Th2 -- the exact opposite of what we want. To their credit, they emailed back and said they were aware of the issue and were fixing it. They said they are going to return to the original formula, but now, because of all the chaos these changes have created, they're saying they can't fulfill any more orders until January or February. This is frustrating.
The last time I couldn't get ImmunoStim for a while (about 1 month) my health definitely deteriorated. It will be interesting to see if it happens again.
In the meantime, I'm trying to track down many of the ingredients contained in ImmunStim so that I can take them separately if I start to go downhill again. My research on that front brought me to this nice summary of natural Th1 boosters and suppressors, which I wanted to pass along:
There are many natural agents available to help restore balance in an underactive Th1 arm. These include:
Omega-3 fatty acids, monounsaturated fats found in olive and hazelnut oils, vitamin A cod liver oil, l-Glutamine, Silica, digestive enzymes, friendly intestinal flora or soil based organisms (SBOs), ginseng (Red Korean or concentrated Siberian Ginseng extract), chlorella (spirulina and some other sea vegetables may have similar benefits),thyroid hormones, garlic (raw or aged extract), l-Glutathione (or products that raise levels), DHEA or AED (androstendiol), UV-A light, vitamin E, transfer factor (antigenspecific) - protein immunomodulators extracted from colostrum, colostrum, low dose naltrexone, IP6, lentinian and certain other mushrooms, Thymus extracts, licorice root, dong quai, beta 1,3-glucan, noni, neem, gingko biloba, exercise, water (to aid detoxification), a positive attitude and prayer, the ability to forgive and be compassionate, and having long-term goals.
Factors that induce Th2 cytokines and suppress cell-mediated immunity.
Processed, heated vegetable oils high in trans-fatty acids and linoleic acid (safflower, soy, canola, corn and sunflower), glucose (white sugar), asbestos, lead, mercury and other heavy metals, pesticides, air and water pollutants, progesterone, prednisone, morphine, tobacco, cortisol (in high doses), HIV, candida albicans, HCV, E coli and many other pathogens, continuous stress, thalidomide, UV-B light, pregnancy, melatonin(conflicting research suggests that high levels induce Th2 cytokines while very small amounts induce Th1 cytokines), alcohol (animals studies show that ethanol definitely suppresses Th1 cytokines and induces Th2; beer was not tested and there are some indications it may help), streptococcus thermophilis (sometimes found in yoghurt),candidiasis, circulating immune complexes (CICs - caused by a combination of leaky gut syndrome and poor digestion of proteins due to a lack or HCl and digestive enzymes), sedentary lifestyle, negative attitudes, low body temperature, acid saliva pH, chronic insomnia, inability to dream, weight lifting, and steroids (for muscle gain).
Source: http://www.diagnose-me.com/symptoms-of/immune-system-imbalance-TH2-dominance.html
Source: http://www.diagnose-me.com/symptoms-of/immune-system-imbalance-TH2-dominance.html
Patrick, you are an amazing source of information!! Wow, I have written on my blog about the Th1-Th2 imbalance but I knew of only a few ways to change it in the way we need. As you know, my son and I have both had good success with Imunovir and LDN.
ReplyDeleteBut I am fascinated by these lists you posted and have bookmarked this and the link you included for future reference.
I was very interested in your statement that green tea promotes Th2 because green tea supplements are supposed to help with energy/metabolic rate, but I have never had good luck with them.
Very interesting - thanks!!!
Sue
Live with CFS
PS alcohol is also bad for us because it is a vaso-dilator which makes OI much worse. Too bad - I do love a good, hoppy beer :(
Sue, I know exactly what you mean about the beer. Can't tell you how many times I've said, "maybe I can just have a half a beer," or "maybe just a few sips," or "maybe a non-alcoholic beer." LOL. It never seems to work out. So sad.
DeleteI hope your son pulls out of his crash soon if he hasn't already and that you all have a great week. Take care,
-Patrick
this great. i went back and re-read your first visit with Dr. C summary...for the millionth time!...and realized, despite yours & Dr. C's very clear explanation, that i have had the "tilt" backwards all this time! so when i had read that green tea stimulated Th1...i stopped drinking it! and i was backing off on melatonin. boy! do i feel dumb! so thanks for the great list of what helps and what hurts! maybe if i read it a million + 1 times i'll get it straight in my brain fogged mind! your blog is an amazing gift!! Thank you!!
ReplyDeleteso...i was right about green tea...wrong about melatonin, depending on amount. maybe i was not as far off as i thought!
DeleteHi RIH.
DeleteI was going to say the same thing, but you beat me to it. Green tea stimulates the Th2 side (not Th1, but I think that's what you meant,) but the jury is still out on melatonin. I think it depends on the amount. Small amounts are better, but I don't remember what the cut-off is.
How are you feeling lately?
-Patrick
i just titrated my dose up for the second time...now 1 in morning 1/2 at night. i have been have some great days after the pain-filled 3 days following my initial dose and first increased dose. i had a full day today and am just getting hit this evening with pain. i am experiencing what feels like kidney pain. it seems to me you mentioned that somewhere on your blog but can't find it now. i am very hopeful!!
Deletehow long were you taking Equilibrant before you didn't get a crash after increasing your dose? i'm thinking i'll know when i've gone too high on the dosage by having a crash i don't pull out of. i agree with you, the post-increased dosage pain feels different then my normal crash...and i don't think it's psychological... though the pain is more tolerable knowing it is accomplishing something.
thanks for your concern. i feel like you are walking three steps ahead of me holding a flashlight on this path so i don't have to grope my way forward!
what a blessing!! thank you!!
cris
Cris, Based on your note below it seems you found the answer, but just to be clear, I remember that I stopped getting the start-up reactions when I went from 4 to 5 pill per day and from 5 to 6. But before that, every time I increased dosage I felt strongly fluish for a time.
DeleteThanks for your kind words and for reading my blog.
-P
I found your comments about green tea fascinating as well. I tried drinking it at one point like Sue did, but I felt it was definitely making things worse. I didn't know why it didn't go well, just knew it was not CFS Friendly.
ReplyDeleteDid the company say if they are definitely going back to the original formula? I hope you can get it again soon, there is nothing more frustrating than finding something that works & not being able to get it!
Hi Cari,
DeleteI found some studies a while back that said that green tea stimulates the Th2 side of the immune system and isn't good for CFS patients. Yes, the company said they are definitely going back to the original formula and not a moment too soon. I'm afraid I might be backsliding right now.
We'll have to catch up soon. I know a lot has been going on with you. Take care,
-P
Finally, a good reason to avoid asbestos!
ReplyDeleteHa! Like you needed one :)
DeleteHi David. Long time no see. Hope you are doing well my friend.
Thank you so much for posting this information. So it looks like I'm on the right track with diet: Paleo (the right fats) plus cultures and ferments (for good intestinal flora) and raw milk (for glutathione production). These are all TH1 friendly. I really should try LDN. I've been meaning to but my primary is very reluctant to prescribe it but he is also unfamiliar with CFS treatment. My next experiment is going to be tanning beds for UV exposure since I'm in the New England region and get very little sun exposure during winter months and I know it helps me.
ReplyDeleteHi Baffled. I tried LDN for a while and I thought it might have made me worse, but I know many patients like Sue who have good results so I think I just need to try it again. I only gave it 10 days last time at a VERY low dose...literally, tiny crumbs.
DeleteInteresting idea about the tanning beds. Let me know if that seems to help.
-Patrick
found your entries re: kidney pain...sounds like the cause was never resolved. are you still having it? did Dr. C say it was related to entroviruses under attack?
ReplyDeleteHi RIH. I still get the kidney pain sometimes, but it seems to be much better than before. I rarely record any kidney pain on my health chart these days, but like many symptoms, it likes to rear it's head every once in a while just to remind me it's not gone.
DeleteDr. C said that it probably IS the viruses focusing their attack there. He said they attack different places in different people.
and i'm hopeful it's also the Equilibrant attacking the stirred up viruses!
Deletejust re-read your first Dr. C blog. everytime i read it i see something new, based on my current experience...answering new questions that crop up. found the answer to the above...which is what i suspected. here's a new question: are you still having kidney pain?
ReplyDeleteThank you for the list Patrick. I also have been working on the TH1/TH2 shift as I have so many low grade cold viruses as part of my ME symptoms. I also used to have a horrible fluey feeling that went on for days without resolving.
ReplyDeleteThis winter since trying a number of these on the list all together... including LDN, BetaGlucan, astragalus (not on list but I believe it's also TH2 dominant), liquorice - my symptoms have definitely changed. I don't get the fluey type of feeling really ill any more, but sadly so far I have had far more colds instead! Maybe it will take a while to sort out.
Interesting blog - I will read the rest gradually.
Mermaid, nice to hear from you! My experience has been very much like yours...once I started focusing on these Th1 supplements and foods, my flu-like symptoms were greatly reduced and I started to realize that they are separate from the fatigue symptoms. I used to think of them as one in the same. I still get the fatigue, but not as severely.
DeleteI hope to hear from you again. Best of luck in your journey.
Anyone have any ideas about Vitamin D?
ReplyDeleteI read all these great things about Vitamin D, but it seems to make me worse. I wonder if it's because it shifts toward Th2 immunity maybe?
This is exactly why I want to beat my head against a wall. We shouldn't be drinking green tea? Green tea was one of the things my doctor expressly recommended, so I've been drinking it (decaf) all day every day since last August.
ReplyDeleteAnd I also read your post about almonds. Like you, I drink almond milk, eat almonds in place of every snack food I used to eat (peanuts, popcorn, crackers, pretzels etc.), and use almond flour to make crackers and waffles. But I should stop?
For months and months, I have been sitting in front of a light box for an hour in the mornings and taking vitamin D supplements... then I read about the Marshall Protocol and I wonder: Could I be making myself worse with these things??
After 1.5 years with ME, I am back in a quicksand of indecision wondering what my next step should be. I need to find a way to get back to work so we don't lose our house and everything else. Sorry this sounds like a rant, I just cannot believe the conflicting information everywhere. I trust people like you, who seem to have researched as much as I have, more than the doctors, always.
ElizabethMilo.com
Elizabeth, I know your frustration. I keep reading all sorts of conflicting things on what I supposedly can and cannot eat. Keep a few things in mind though: most of these things are not going to make or break your treatment. I think it's about getting all the puzzle pieces in place at once. So if you've been eating healthier and doing other things right, it's not like a little green tea is going to undo that. I still eat almonds occasionally, even knowing that they are high in pro-inflammatory Omega-6s. No one thing is going to make or break it, in my opinion.
DeleteWhile I believe that the studies are correct about green tea and almonds, I think the Marshall Protocol is complete BS. This theory has been soundly debunked by many experts. I remember doing a lot of research on this at one point. I mean, when you think about it, why would something as natural as *sunlight* be harmful to people's health (not counting skin damage). Besides, it's a fact that ME/CFS rates are higher in higher latitudes where there is less sun. There's very little ME/CFS in equatorial regions.
But yes, I completely agree with your frustrations. I've been wondering about with several like that myself...the latest being whether coconut milk is good or bad for me. Just when I think I've found something that works for me, I read something contrary. When that happens I usually just research a little more to find out who's most likely correct, then sometimes hedge my bets with moderation.
This comment has been removed by a blog administrator.
ReplyDelete