HealingWell
Search Close Search
☰

any ideas

Support Forums
>
Chronic Fatigue Syndrome
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/20/2014 6:39 PM (GMT 0)
Hello everyone, this is my first post anywhere, I've been suffering big time for almost 20 years. Well, when I was 13 it started with sudden onset of dizziness which has lasted throughout my life with exhaustion, anxiety, catching every bug going, depression which I firmly believe is due to being constantly ill, exercise intolerance, on good days (when I say good days I mean symptoms at low end of scale, symptoms always present to some degree), I can do some exercise but afterwards am completely exhausted so I don't exercise, alcohol intolerance, symtoms really bad day after and alcohol hits me almost immediately, awful memory with a foggy head, there are alot of other symptoms, I could probably go on forever, I have found doctors completely useless since going at the very start of all this, been a thousand times had a thousand tests, been fobbed of with everything mainly saying im stressed and giving me antidepressants, this has ruined my life, missed out on so many things, I dont really know what im looking for on here, I expect to be like this forever, maybe to know im not alone although I wouldnt wish this on anyone
Posted 4/20/2014 10:45 PM (GMT 0)
E.ster I just wanted to respond to your post. I'm guessing that a lot of people are busy with family stuff today. Unfortunately I don't have any answers for you. I've been dealing with chronic fatigue for a long time and it's finally gotten to the point where it's completely debilitating. After seeing many drs reading a dozen books and doing hundreds of hours of rsch AND spending a small fortune on all this and dozens of supplements, honestly it seems that the only thing I've done that's really made a different is to change my diet. I eat no sugar, gluten dairy, corn, most meat. I do have food allergies so it's possible others may not have to go to this extreme. I'm still searching for answes. I can't work right now and I really need to. It seems that some things work for some people and other things work for others which makes it really difficult to find an answer. Maybe there are many answers. I just started reading one of David jernigan's book on lyme disease and was thinking that I'd wasted more $ but I'm really glad I got it because his perspective on disease is interesting and makes sense to me.
Anyway YOU ARE NOT ALONE. Jernigan says to see yourself as half well rather than half sick. Believe me I understand. Keep searching for answers. The alternative is not an option. I've given up on drs and am ready to give up on all these supplements to. Maybe just sticking with the basics for now. I'm a neophyte here. I'm sure there are many others who have more info to share with you that may be helpful. Hang in there!
Posted 4/21/2014 6:29 AM (GMT 0)
I am sorry for your situation too. Like azsusan, diet helps me to at least be able to function. I also cut out the gluten and sugar. Haven't gotten around to testing other stuff. Also juicing helps me. As for me, I got the West Nile about 8 years ago and it has mutated into this. Last summer I took a bad turn and have been struggling daily since. I also have exercise intolerance. The whole thing totally sucks. I try not to talk about how I feel with my family, but it is always there and hard not to when they want to go do something and I can't because "I don't feel well". Uhg. On top of that, I am bored out of my mind, but since I have exercise intolerance and feel like crap and my whole body hurts, I end up not doing anything. It is a catch 22.

Other than that, I just try not to think about it, which doesn't really work. But the diet has helped and that makes me optimistic that if I keep trying I will at least not be bed ridden and maybe keep improving.

No, you are not alone.

Post Edited (jkn913) : 4/21/2014 12:32:22 AM (GMT-6)

Posted 5/5/2014 8:59 PM (GMT 0)
Having had my diagnosed CFS put in remission (80-90%) my heart goes out to people who write the kind of posts I've just read. In a nutshell, you have tried everything, doctors are no help at all, you have lost your quality of life, you need antidepressants to deal with this and would just give up except that would be even more depressing. You are here to not feel so alone and that maybe, just maybe, someone might have an answer. In all humility, I am that person.

The problem we can all get in is a great deal of skepticism about something that sounds too good to be true. After all you've researched and been trough just to have all your hope dashed, "if something sounds too good to be true it probably isn't". Notice the word "probably".

Please check out the reviews of Dr. Paul St. Amand's book on Amazon. This is how I got well. And, if you decide to go down this path you "probably" will too.

http://www.amazon.com/What-Your-Doctor-about-Fibromyalgia/dp/B001Q3M66G


I am available to answer any questions regarding this protocol.

Randy_H
Posted 5/5/2014 9:34 PM (GMT 0)
Randy I really appreciate your response. I read his book got the guaifenesin went on the diet removed the salicylates and really did start to feel better. The problem with that is that I started about 4 other things (supps mostly) at the same time so there was really no way for me to know what was doing what. I knew that I wasn't being scientific about this and I also knew that if I started feeling better that there would be no way for me to know what was responsible for that. BUT I WAS SO DESPERATE TO FEEL BETTER THAT I DIDN'T CARE. Then I read a critique of this protocol written by an it prof @ mit who had done extensive rsch and just moved on to something else (terry wahls). I spend a great deal of time reading and it's easy esp when you feel desperate to get caught up in thinking that maybe THIS will work and then I read something else and think maybe THAT will work.
I'm very curious about your experience with cfs and any other diagnoses; what you think the underlying cause for your particular case might be and your experience with the guaifenesin and the low carb diet. I think I started to think maybe it was just the diet that resulted in my feeling better. Instead of the guaifenesin. How long did you take it? Did you use anything else? I've been taking monolaurin in case there are underlying infections lyme or something else. Have no clue if it's helpful or not. But I DID start to feel better after I went on the diet dr amand outlines and I was taking the guaifenesin then. Tell me more please!
Posted 5/5/2014 9:38 PM (GMT 0)
Randy how long did you do the guaifenesin before you started to feel better and how long did it take for you to get to the 90%? Do you still take it?
Thanks!
Posted 5/5/2014 11:09 PM (GMT 0)
azsusan,

I will take Guai for the rest of my life. It is not a cure but simply gives you body the support it needs to rid itself of phosphates that have built up in your tissues over the years. His theory is that this is a genetic disease of the kidneys that prevents them from the proper elimination of these phosphates. The Guai helps the kidneys do their job and we slowly get getter.

But...as all this excess phosphate is pulled out of your cells and eliminated, your symptoms usually actually get worse for a while. You begin to cycle worse/better. That's one way to know you are getting better. The other way is to have someone trained to measure the lumps and bumps of Fibromyalgia check to see if they are diminishing.

I decided to give the Guai a 100% effort. I changed my soap to "Dial" and my shampoo to "Head and Shoulders" my toothpaste to Tomes of Main Cinnamon. All these are approved for no salicylates. I complained to St. Amand that I didn't want to give up all my suppliants (and I was using a ton). He said "Are they really helping you?" I said "probably not". Then he said "So which way do want to go. Stay with what you have or let me help you. That decision is up to you."

You need to check your suntan lotion, chewing gum (no mint), change from tea to coffee. The list goes on and on. And it's a pain, but the far worse pain is not getting better. I don't have to tell you that.

After about six months St, Amand told me to try some strenuous exercise. Frankly I was afraid to but I went ahead. To my surprise and complete joy I could now do things physically I had avoided for some time. I pushed it harder and harder to see where the "wall" was. I finally hit it so I knew what my new limit was. It was a few years before I was 100%. Eventually I was able to swim almost two miles at a good pace without any CFS symptoms. I considered that full remission.

I did great for about five years and then had a relapse. St. Amand asked me what meds I was taking. I was on Welburtrin which comes in a long acting once a day pill. Unfortunately those long acting tiny time pills interfere with long acting Guai and you don't get enough. I had been taking Welburtrin for SAD for six months out of the year for three years before it caught up with me. We added some short acting Guai which helped, but the long acting is where it's at. So now I'm back to about 80% and want to get all the way back.

So it takes vigilance and patiance but I will never allow myself to go back to where I was because now I know the way out.
Posted 5/5/2014 11:40 PM (GMT 0)
E.ster, I'm so sorry that you have been so sick for so long. It sounds to me like chronic infections. Lyme disease testing is notoriously unreliable, so even if you've been tested for it and the result was "negative", that by no means rules out the possibility of Lyme. Try to see a Lyme Literate doctor or naturopath if you can.

Have you had an endoscopy? See if you have Celiac Disease or not. If you do, that could explain a lot of your symptoms. If you don't have Celiac Disease, you could still have non-Celiac gluten intolerance, in which case a gluten free trial would be of value.

If you really can't find an answer to your health problems, then please see an occupational therapist. They will help you to live and work with your symptoms, no matter what their cause.

I give all this advice from personal experience. I got Lyme Disease over 3 years ago, which triggered Celiac Disease, and I was only just diagnosed with Celiac and Lyme earlier this year through seeing a Lyme Literate medical and naturopathic doctor. But before my diagnoses, I had been seeing an occupational therapist which was of great help in getting me the job I have now that is paying for my healthcare. I was bedridden before seeing the Occupational Therapist. He was so helpful.

-------
I should also mention that the reason I decided to see a Lyme literate medical doctor (who also studied naturopathy) was because of what happened in a pharmacy about a year ago.
Here is the story:
I was trying to find a skincare product that would help to relieve my highly sensitive, irritated skin. I had tried so many different products over the last couple years that were supposedly "suitable for sensitive skin" and I was getting desperate. There was a lady nearby with the pharmacy uniform on, and my mum called her over to help us. While I was explaining my skin situation to her, she was looking analytically into my eyes. "So which product should I try?" I asked. "Sorry," she said, "do you have a lot of trouble sleeping at night and pain throughout your whole body?" I was taken aback. Most people who looked at me said things like, "you look well" not "you look like you're suffering". I blinked at her. "You have very high cortisol levels," she continued. "Your nervous system is serverely malfunctioning. It's possible you have thyroid issues as a side effect of the high cortisol. Have you been tested for Lupus?"

"H-how did you know?" I stuttered. "How could you tell I'm sick when most people think I'm so healthy, even though I'm suffering from so many symptoms?"

"I'm an iridologist," she replied. "I can do a proper consultation if you like. It's $100." I had to refuse because I couldn't afford it at that stage. I asked if she knew of a good doctor I could see that bulk billed to Medicare. So she referred me to the doctor she sees.

I got treated for adrenal fatigue and referred to a Lyme literate doctor was Lyme Disease testing. Apparently my thyroid levels were fine, but I suspect that I might have been on the lower side of the normal range. I haven't been tested for lupus yet.

--------
You might want to see an iridologist. I always thought it was quackery before my own experience with it.
Posted 5/6/2014 12:20 AM (GMT 0)
Randy your story is compelling and I really appreciate your sharing it with us. I think I'll give the guai a try again since I did see some significant improvement while taking it. But still thinking the diet may also have caused the positive change. But considering side effects of guaifenesin appear to be negligible won't hurt to try it again.
Posted 5/6/2014 5:33 PM (GMT 0)
azsusan

I realize some people will think somehow I get a percentage on St. Amand's book :) but if you are going to give it another go, please read it.

Use Long Acting Mucinex. Start with 600 mg in the morning + 600mg at bedtime. If your experience of increased symptoms is too difficult, cut back. If not increase it after a few weeks. Everyone is different in their reaction to this stuff. But take it twice a day. I didn't realize the back pain I had was really Fibro until it went crazy with the introduction of Guai. But it was a "good pain" because it told me I was on to something and might actually get better.

Without controlling for salicylates the Mucinex will do you no good. Have a look at his web site. Good resource.

It's a pain I know but if you do it right I do believe you will get better.
Posted 5/6/2014 5:43 PM (GMT 0)
randy, i won't accuse you of opportunistic posting! i think that if you've found a "way out" of a debilitating, life-destroying chronic illness, the most natural thing would be for you to want to share it with others. And i REALLY appreciate it! If you get a chance, read this: http://web.mit.edu/london/www/guai.html and let me know what you think about it. It's lengthy, but interesting.

i took the guai this a.m. 600mg, and will continue to take it until what i have is gone. At that point, i'll probably will stop and see if i notice any difference. Maybe that's not enough of a trial? whadya' think?

thanks!

Susan

Posted 5/6/2014 8:49 PM (GMT 0)
azsusan

Great. But you are doing this solo without a practitioner who can map you. You have no way of knowing if you really eliminated all the Sals. But after reading the reviews of St. Amand's book people do it this way all the time it would seem. So it can be done.

I would give it at least 4-6 months. I would up the dose until you get in more pain, then back it off some. Your Pain should cycle. Maybe go to 1.5 of the 600 mg pills twice a day. You can find it on-line and I believe Costco. Good Luck. Go for it.
Posted 5/6/2014 8:50 PM (GMT 0)
azsusan

Thanks for your post and sharing this paper with us. It's a long read but I plan to finish it. Mark London has done his homework.

Oh Yes. Did I mention that the Guai protocol is highly controversial? Had I known of papers like this one I might have not bothered to see St Amand in the first place. Fortunately for me I did not.

London focuses on the pain of Fibro and how Guai by itself may be helping directly. What abut the deep level exhaustion from just minor exercise? That was my problem. It was only after starting Guai that pain in my neck, back, elbow, legs began. At one point I had to limp to walk. And it cycled. It was not pleasant. And, as I've said, eventually all that pain stopped and later I was able to do any amount of physical activity I wanted with no CFS push back.

I decided to test St. Amand by going back to using mint toothpaste and everything else I had eliminated because of salicylates. I wanted to see if he could tell. Sure enough the next "map" he did after 6 months was way worse and he wanted to know what I had been doing. He was very concerned. I didn't tell him. I just went back to my non- salicylates ways and the next meeting my map got way better. Now this was a sample size of ONE, but that convinced me of his mapping abilities and the effect of salicylates on the treatment.

It's true. The phosphate connection to CFS and it's elimination through Guai is St. Amand's theory. He has no proof. It may well be something else at work. What I do know is that no placebo effect put me back in the swimming pool or skiing all day.
And I know a number of people with similar experiences. But I've talked to people who did not get better also. Some have said "if you have what St. Amand fixes you are in good hands with him". I believe what he fixes is most cases of CFS/Fibro. That's why I'm willing to make a pest of myself on this board.

Randy_H
Posted 5/6/2014 9:05 PM (GMT 0)
Randy, i appreciate your insight on this, and also sharing your experience with "testing" the protocol by exposing yourself to the salicylates again. I was really curious what you would think about London's rsch. He's obviously not a medical professional, but as you say, did his homework.

I don't believe that something has to be scientifically proven in order to be legitimate. In fact, at this time, after seeing approx 12 different dr's and naturopaths over the last 2 years and spending approx 20K on diagnostic testing, procedures, medications, and supplements, ($600 on supplements just in march) your personal experience with this protocol is more meaningful to me. In fact, ANYONE who manages to recover from chronic fatigue syndrome, well, i want to hear what that person has to say!

Based on what you've shared, i'm gonna' try the gaui again. started taking it yesterday, and unlike your experience, i feel better today than i have in a LONG time. BUT, i've been doing a lot of detoxing, and i've RADICALLY changed my diet, so it's possible that i'm a little further on--i don't know. Although pain is NOT the most salient feature of my condition (the fatigue is), i certainly have chronic pain, which it doesn't sound like you had (at least before the gaui). This condition is very complicated, and i think that different things work for different people, and i don't think Amand would have enjoyed the following he has over the years if his protocol hadn't worked for a significant # of people.

And it's entirely possible that it DOES work for reasons other than what he proposes. But, if it works, that's the most important thing. I experienced exercise intolerance also--3 mos ago, took a 30-minute, very brisk "hike" and was in bed for 3 days after. But, today, i'm up to 20 min with no ill effects, and even managed to swim yesterday for awhile. so, i'm managing to make some improvements. It really seems to me that the only things that have made a significant difference were the diet change and graded exercise. also, getting sun early in the day. BUT,, it's also possible that the gaui gave me a "push" i hadn't previously had, so again, grateful that you shared your experience!
Posted 5/6/2014 9:28 PM (GMT 0)
Randy I'm seeing that there is TONS of anecdotal information on the Internet from people for whom this protocol has worked. I can't imagine that ANYONE who had suffered from cfs/fibro would claim that they'd gotten better if they hadn't.
Posted 5/6/2014 11:26 PM (GMT 0)
azsusan

I'm glad you're feeling better. And yes, there are a lot of moving parts for you right now. I'd recommend you stabilize you diet and other remedies so any positive changes can be attributed to the protocol. London suggests that Guai may have direct positive effect, so that might be what your are experiencing. But the long term effect of Guai doesn't usually kick in for a week or two. Don't be dismayed if the pain you have, or even new arias of pain, arise. I'd expect that. If it's working you will cycle.

Overall I think on the surface London has done a great job of debunking St. Amand and his work and theories. The problem however is that, as you have realized, there are simply too many people who have their lives back. If St, Amand's phosphate theory turns out to be wrong I'm satisfied with the idea that there is a perfectly good explanation as to why the protocol works for so many. We just don't know exactly why. It's not placebo effect.

St. Amand is no slouch. He was a practicing endocrinologist before he got sick and stumbled upon this treatment. Now this is all he does. He still is an associate professor at UCLA. He probably would have retired long ago but with the failure of the Oregon study he can't stop until he's taken seriously by his fellows. He's working on showing that the disease is genetically inherited.

Kill all the salicylates, take the Guai............Fasten Your Seatbelt. shocked
Posted 5/7/2014 12:19 AM (GMT 0)
Great advice; can't tell you how much I appreciate it! And I totally agree with everything you've said here.
Posted 5/7/2014 5:56 PM (GMT 0)
No, it doesn't take too much searching to find testimonies of success from the protocol. Yes, why would someone like me be insisting on my freedom from CFS if it weren't true? Why would I bother to be posting here if I'm not sick? It's because I WAS sick. No longer.

Here's a new one I've found from Israel to consider:

http://www.fibrokur.com/Fibromyalgia_English/

Kill the Fibro!!!!
smilewinkgrin
Posted 5/7/2014 6:08 PM (GMT 0)
thanks, Randy; i read the testimonials on amand's website last night posted by their online support group volunteers, and was even more convinced. I realized, after reading about all the things we need to avoid, that i haven't been doing that (which MAY explain the absence of any adverse effects, typically experienced when the guai is not blocked). I've been cutting down on the caffeine (such an addict) and hoping to get off it, but when you have cfs, it's hard to give up the only thing that seems to be giving you some energy. I've been using green tea to transition from the VERY intense starbuck's french roast i'm accustomed to, and i'm not ready to go cold turkey just yet. I'll finish the coffee this week, and then be down to 2 c green tea, and then start to titrate off that, eventually removing all other "offenders." Do you know what the rationale is behind no tea? he says on his website that people w/hypoglemia (i know i am) should avoid all caffeine, and that makes sense, but he says you can drink decaf coffee, but no green tea?
Posted 5/7/2014 7:24 PM (GMT 0)
Like Mint, all teas have a high concentration of salicylates. Just that simple. But I didn't know about tea 12 years ago when I started so I was drinking it. The protocol still worked just fine. Here's the thing. According to St. Amand's experience with 1,000s of patients some people "block" more easily that others. I probably got away with the tea because as a guy it's far easier to remove the Sals. No makeup, lotions etc. I probably did a great job with everything else so the tea did not overwhelm the Guai.

While some can get away with some Sals, others can't and will block. You don't know how you will react so to give this a good last trial you really need to go all in and remove 100% of Sals. I drink coffee now, but mostly decaf.

Did you get the book? (I want my 1 cent promotion fee from St. Amand) cool
Posted 5/7/2014 7:42 PM (GMT 0)
Yeah I read the book a couple of months ago. Interesting that the link you sent that website says black tea is okay but green's not. I think amand says neither is. It will take some time for me to get rid of all this stuff but I think I'll continue the guaifenesin in the meantime since it appears that it may have been helping even though I wasn't 100% adherent. I'm going through some of the supplements looks like some of them will need to be discontinued as well. Eventually I'll commit to 100%. Makes sense if you're going to try at all to do it correctly to give the protocol a fair chance. The hardest thing for me will be the caffeine. I'm not willing to throw myself into an an extreme withdrawal (addict talking)
Posted 5/15/2014 8:00 PM (GMT 0)
azsusan

Saving the caffeine for last makes sense. I'm not hypoglycemic so I can have all I want. The reason you are told to quit it is it apparently helps reduce hypoglycemia. But if you do a low carb diet, ala Atkins, that's the largest part of it. But hey, if you aren't doing a low carb diet you will have plenty to deal with as it is. You will go through sugar withdraws, depending on how many carbs a day you eat and at what average glycemic index. I went through withdraws and recently helped a friend Kick the Carbs as well. If St Amand were to choose between loosing the carbs and caffeine I'll bet it would be Carbs (sugar) all day long. However as he states "Caffeine is not allowed since it prolongs the action of insulin." They guy is an endocrinologist so he is going to be hard core.

The salicylates war is hard also. It's such a pain at first. You have to be ruthless.

So, the things to conquer are:

Salicylates
Carbohydrates
Caffeine.

So I'd say exhaust the first two, slowly increase your dose of Guai long action to maybe 2+2 600 mg a day and see what happens. (Have plenty of Ibuprofen hand for when and if it hits you)

If you don't need the Ibuprofen then it's time to loose the caffeine. So I'd do a bang up job on #1 and #2, get in some real bad but cycling pain, then you can keep the coffee until later.

cool
✚ New Topic ✚ Reply