attn:mikeralph

[dawn2]

Hi MR:
You certainly have done your research. I understand why from my own experiences. I do believe that there has to be a deficiency, yet all these doctors only look at their specialty and say, "Ok, this is wrong here" and then they prescribe something that only masts the real problem. Your experience in the basement sounds horrible. I don't know how you managed to endure that one! The house we bought had a completely restored cellar - beautiful berber carpeting and it was awesome for playing ping pong and so forth, but I would come up wheezing and coughing all night. Even though it was a dry cellar -dampness still comes in under the floor - from sweating. My husband pulled all the carpeting, set up a air filtering system, got two dehumidifiers and put a sealer paint on the floor. I couldn't even stand the smell of the gas of mold. (That was only the beginning of our journey of remodeling!) Yes, I too have IBS. I never know what foods will affect me in what way. Some I just can't eat anymore. I have so many questions for you, but I won't overwhelm you with them all together!! The trinity brand acidophilus - can it be obtained at any health store? You mentioned the hydration capsules - is this refridgerated? And should I begin with the cysteine for the allergies? I do take magnesium when my stomach can take it and I do take a real good daily vit. Sounds like all sugar is out - even fruit? Ok, I guess I gave you enough questions to ponder for now. I sure hope you are feeling some difference with your treatment. I know this leaky gut/IBS leads to even more serious problems down the road. I know one lady who started out like us and ended up with IBS so bad, she just had several feet of her intestines removed. It's nothing to ignore for sure. Perhaps, a year from now, you'll be back into marathons...Thanks for all your help. dawn2

[mikeralph]

dawn,
i screwed up... the probiotic is called Natren however, there are a lot of really good brands out there so whatever you are comfortable with. but i am suspicious of L. Bifidus and it may be unfounded.
hydration -- a friend told me about that.... all i do is break open the any probiotic into distilled or mineral water and hydrate them. i guess hydrating them makes them "active". your body can do the same thing since there is a lot of fluid in it but one other advantage is that they start multiplying in the glass if you keep it at 112 deg. they feed off the filler ingredients (ex. mine have garbanzo bean powder)
i also think that more is likely to get into the intestines before the acid damages them.

i read recently that people carry with them the bacterial flora that they acquired as a baby with them the rest of there life. i asked my mother recently if she breast fed us kids. she only did it with my oldest sister (who is the only healthy one among us -- coincidence??????? i don't know)

i was dumbfounded when she told me that she didn't even do it the day i was born. that is when the baby needs the colustrum with all the good antibodies. so i grew up on cow's milk and corn syrup ---- the perfect diet for a newborns developing nervous, digestive, and immune system!!!!! apparently i kept landing back in the hospital.

it boggles my mind how ignorant the medical community can be.
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that was a good thing you did with the basement. hydrostatic water pressure will not stop unless it is sealed. that is why so many basements are musty. i just don't want to see you throw out all your furniture or anything else extremely drastic before trying other avenues.
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i am still taking the nystantin (the diflucan ended a couple days ago) this is really important -- the nystantin was the drug that was really making me ill especially when i gargled with it. i really do have a strong stomach and it takes a lot to make me get nauseous but that stuff really did it. at first i thought it was the bitter taste, but now that it has settled down quite a bit it really makes me think that i had a large colony of yeast all throughout my nasal passages all the way through me. I am hoping so much that this is the answer, or at least the starting point for me. i know there are other factors involved.

one of my doctors completely dismissed the idea that yeast is a problem. that really disturbs me.... they should at least give it a try. doctors have been repeatedly proven wrong throughout the ages. the young doctor who suggested that doctors wash their hands before delivering babies was ridiculed and eventually thrown out of his medical association -- austrian doctor named semlweis (sp?)
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can you tell me again what your opinion on yeast is and anything that you have tried to possibly treat it. i think you said your doctor rejected treatment because testing did not show a strong enough reaction. once again those tests are almost completely worthless for non ige reactions. even the elisa test doesn't tell the true story. doctors don't get it though.
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yes sugar is completely eliminated. when i eat it, i wake up the next day with a horrible brain fog/ hangover. it used to give me horrible mood swing.
i even have to be very careful with complex carbs
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you need to tell me what your blood type is....... i have some interesting theories from a Dr d'adamo to share....... if you have " O " type like me that could possibly explain a few things.
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concerning CYSTEINE..... i really believe and have strong evidence that this stuff works. i am not foolish with my money, and i won't buy things that are of minimal value. however, this is something i take every day. in fact i think it is too strong sometimes. it has multiple functions but for me i believe it does an excellent job mopping up the toxins that are released from either yeast or noxious bacteria. i also really believe that every chronically ill patient would really benefit from this -- just as one doctor has stated. i hope you go to the library and locate some books on the subject of treating illnesses with the building blocks of life (amino acids) as opposed to just taking symptom treating drugs (not that i am against drugs -- they can save lives)
the information is very extensive and sometimes contradictory therefore it requires a lot reading and study but i believe it is worth it. this way you don't waste your money or give up because you don't see immediate results.
amino acids can be pretty powerful and if not done correctly they can cause some serious (but temporary) imbalances.

#
concerning your stomach problems...... i am incapable of relating to that. i have never had a problem with my stomach. i don't understand acid problems

i juat had a test done to check for my acid levels. i swallowed a telemetry pill and sat in a chair for 5 hours with a belt around me. this gave readings as the pill passed through me they had me take other pills to simulate food. i go in on feb 14 for the results but the nurse said i have a lot of acid which may be good but i think it was spilling into my small intestines and that needs to be alkaline. if not then the acid destroys the pancreatic enzymes and possibly that is why i am not digesting my proteins. i can't wait to find out.

#
yes, the doctor is 100% convinced that i have leaky gut syndrome. i just hope it is not too late for me. i also hear all these horror stories about people who have there intestines removed.... many end up worse... what a nightmare.

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at some later point i may chronicle the last few years of my life..... the most important was the exposure to the mold where i used to live. it was so bad, i'd wake up in the morning in tears. i later found out that i was having partial complex seizures from the stuff. i lost 25 lbs -- and i didn't have much fat to begin with so much of it was muscle. i was literally eating myself. what is interesting is the gradual progress that i made every month after getting out of there. if i had to pick the most valuable things i did to help me recover (which i am still doing because i have had problems for 20 years --IBS and everything that is associated with it) i would say it would be the following: probiotics helped somewhat, goat milk yogurt helped dramatically (it helped me regain all the weight i lost), depakote (to settle my brain down -- anti-seizue/mood stabilizer), flax oil (same as depakote), 5-HTP (boost serotonin), tyrosine (boost dopamine, norepinephrine), cysteine (reduction in brain fog), sugar (complete elimination).

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[This message has been edited by moderator2 (edited 02-05-2003).]

[mikeralph]

dawn,
i read a few of your postings to penguin especially concerning the chronic fatigue and adrenal dysfunction.

once again i could be wrong so use your own BEST JUDGEMENT.

i experienced 2 long, grueling years of severe fatigue. i went from being a highly conditioned athlete to a person who could not even go for a walk with my girlfriend because i could not make it back -- i was embarrassed. i had every symptom that you mention. my arms were numb and my heart beat was very weak. i was dizzy and tired all the time. i could not even work. i had to hire someone to run my company -- i just pretended to be doing something.

this is what has worked for me which does not necessarily mean that it will work for you but it is worth thinking about.

you are being given steroids i assume for the adrenal insufficiency -- also the immune dysfunction. the immune dysfunction is something that i am not that familiar with. my immune system is too aggressive -- my t cells and b cells were very elevated in year 2000(i don't know what they are now).
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i am going to get sidetracked right now --- the biggest clue is the "stress" thing. you mentioned that you become easily stressed...afraid to try new things.
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in my very HUMBLE opinion (which may be wrong), i am 100% convinced that you are suffering from a severe lack of adrenalin which is due to a severe lack of the molecules which manufacture adrenalin -- tyrosine, phenylalanine, and methionine.

the overwhelming majority of medical professionals will tell me that i am WRONG. they will state all kinds of rubbish about how the average american eats 3x's more protein than they actually need. they will also present other arguements which sound very convincing.

however, i and the medical doctors who write the books on precursor loading and amino acids believe that the traditional, orthodox, rigid-thinking medical establishment is wrong.

the problem with you may be partially genetic and therefore beyond your control but a large part of your illness is due to a catastrophic collapse in the way your body produces peptides, enzymes, proteins, hormones, etc. also, the problem is like the snowball effect -- one thing (or system) breaks down and it just gets bigger and bigger.

i have really bad IBS. i read that MSM (methyl sulfonylmethane) can dramatically help it. it is also phenomenal for pain, but it also helps with inflamation and helps people who have allergies. it pretty much took care of my IBS from aug 22 to mid december, however it also COMPLETELY took care of my chronic fatigue. i mean completely took care of it. my heart was thumping in my chest, i had not felt that strong in a long time, and i think it did help with the allergies to a fair extent.

i don't know exactly how it did it but it did it. the problem was that i could not sleep -- i became that alert. eventually after i lost enough sleep, anxiety started developing and from there anxiety/depression developed. i was able to counter a lot of it with SSRI's but ultimately i quit taking the MSM because it makes me feel too wired.

i believe it worked by increasing my sulfur (it is a sulfur donor) intake which is absolutely critical for the manufacture of adrenalin. adrenalin is made from phenylalanine (and also tyrosine) but without adequate sulfur/methionine it will not be produced. the theory is that people like you and me use up all our sulfur/methionine/cysteine because our bodies have so much to contend with (immune dysfunction and allergy) -- there is an endless demand for sulfur.

this is why supplementing with phenylalanine, tyrosine (the ultimate anti-stress supplement), methionine(which might make you queasy), cysteine, MSM (you may want to try this-- you might be surprised), histidine (causes deep relaxation and even depression in average amounts-be careful! ), and 5-HTP (very calming).

the problem with the above supplements is that it can be somewhat tricky to achieve the desired effect. usually so many things are out of balance that your body needs a long time to start adjusting to them. also, you run the risk of having things go out of balance -- it happened to me (which is proof that this works).

also it is not a cure all. you still have the IBS, the allergies, and everything else, but now you start to heal very, very slowly and the way that you are supposed to heal -- not by popping steroids.

tyrosine with some sulfur (either MSM or methionine) will cure you of any stress disorder that you have. i had the identical problem -- it worked for me.

if you buy methionine and it makes you ill for the first hour then that is proof that your body CAN NOT HANDLE one of the most important aminos the body needs (methionine is called the "allergy fighter" -- and you have allergies!)
if it makes you ill then that is actually GOOD. because now you have one of the most vital clues as to what will get you back on track to good health.

the doctors who did this research know what they are talking about. they are the pioneers in their field. there is too much research and evidence to ignore it.


if you don't act on this just yet it is okay...you have a lot on your mind. at least store it in the back of your mind so that if you reach the end of your rope you might want to consider it.

what type of sleep do you get: sleep too much or erratic, unrestful sleep? cfids people have one of the 2 types.

i wonder if i have the immune dysfuntion also. i think it goes hand in hand with the IBS which they are starting to pinpoint to mild inflammation (immune dysfunction!!!) below the top layer of the intestinal wall (this is why it is never picked up on a scope or xray).

i know i don't have fibromyalgia which has to do with inflammation and release of leukotrines and prostaglandins.



[This message has been edited by mikeralph (edited 02-04-2003).]

[dawn2]

M/R:
I will throw out some of this info to my doc as he is both open to regular medical and alternative too. I originally started out with sleep problems - not getting to stage 4 - went that way for 12 years. Finally got a doc to listen to me. I have read Dr. D'Adamo's book! I'm type A so I'm a fish person. He also said A's a very sensitive to a lot of things. He's right about that. You do sound like you have a touch of CFIDS, have you looked into it much? You probably have. I went to a seminar on it by a doctor who did research on it. It was quite interesting. He said they don't know what causes it, but believe hereditary has something to do with it. No cure, but it is the sister syndrome to fibro. Sometimes people with fibro have cfids also and vice-versa. And then again some only have one or the other. Weird. Many of the people in my fibro group have both and cannot tolerate perfumes/chemicals of any kind. In relation to the yeast thing - we all took test from Dr. Cook's book and ALL scored high. I was on antibiotics when I was younger for tonsillitus (sp) quite a few times before they took them out. I will put all this info in my thinking cap and do some research on the amino acids to begin with. Thanks for info. I hope you feel better with your treatment. Keep me posted. Dawn2

[ny01]

MikeRalph,

I am highly chemically sensitive for the past year and a half and it is driving me nuts. What one thing helped you the most in this respect? The brain for and sinus pressure is killing me. Any info is so appreciated. Thanks.

Rob