New autoimmune disease list

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Chris55 » Thu Jan 04, 2007 10:27 am

Jimmy--what I am trying to say is that I do not believe in "autoimmune" diseases, per se. In other words, I do not believe the immune system just all of a sudden starts attacking the __________ (fill in here--joints? lungs? central nervous system? bladder? etc.) I still maintain that there is absolutely NO WAY to get any kind of definitive, accurate results from the use of CRAB drugs. The reason: there is absolutely nothing consistent with MS from one person to another--nothing! Now--maybe the CRAB drugs ARE working and doing a wonderful job. But there is no way to know that for sure. Am I getting across here???

As I said, there have been 2 new diseases since my daughter was diagnosed 3 years ago, one causing ON and the other a sudden loss of feeling from the waist down (one of my daughter's first symptoms--NOT numbness but total paralysis dropping her to the ground. This is also a symptom of Chronic LD.) Both of these conditions would/could garner an MS diagnosis (this from the article itself); however, both being diagnosable with a blood test. (I am sorry because I do not remember the names of either disease.) And finally, both easily treated.

Then, we have that poor creature--the first lady who died from PML from Tysabri--and the review into her death conducted by the New England Journal at the request of Biogen. Their findings? SHE DID NOT HAVE MS!!!! She had brain lesions, she had all of the typical symptoms but a negative spinal tap test twice--never having a positive one. What did Biogen say? You're wrong. (Remember: there is NO test for MS!)

And finally to you, Cure...there has always been an "unknown" as to what came first--the inflammation or the immune attack--always! This has NEVER been a definitive with MS! I personally believe the inflammation came first. I believe those we are taking antibiotics (natural like my daughter or prescribed) and experiencing REAL improvement could very well have a bacterial infection. I believe those who have positive results with SEVERE diet changes get better for a reason. I am the perfect example: READ THIS CAREFULLY!

Intercystial cystitis is an INCURABLE DISEASE! (You have all of the symptoms of a bladder infection with NO BACTERIA. I have blood in my urine sample but NO bacteria!) It can be so bad one can qualify for permanent SS disability. Until recently, there were NO treatments. (They now have some really harsh chemical with a barbaric delivery system!) Again, I have had 2 severe flare-ups--both occurring after a drastic change in my diet. I have been able to completely clear up flare-ups with nothing but diet change and supplements. One interesting food I cannot eat during a flare-up--corn. It is an inflammatory. Every time my daughter eats corn, the itching in her arms really ramps up! Now--there is corn in almost every processed food on the American market today. (Had a great item about this on NPR.) Yams are an inflammatory. Foods can have a profound effect on one's health.

So--I know--I am a nut---I am a radical--and I will not live long enough to prove my theories one way or another! LOL! Chris
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crabs and guts

Postby jimmylegs » Sat Jan 06, 2007 1:31 pm

hi chris ya that's what i thought, we agree that CRABs are not for us, and we agree that the start of MS is not autoimmune. we also agree on the importance of supplements. where i think we differ, is that while i'll avoid things that i'm reacting to poorly NOW, i also think that with time and nutrition a wonky immune system will come around and won't overreact to those same things when it's healthy. so, i think it's important to work on the immune system's health for sure. and then maybe the diet won't have to be so restrictive. i am all for limiting processed foods however.

i had a brutally painful urinary thing going on in the past. i went to the docs over and over again and they found blood and assumed infection. i would get prescribed antibiotics with pain killers and i'd take em til the symptoms went away, and then when i was done with the medication it would come back. went on like this, and it was excruciating, for probably over a year, and someone recommended a naturopath. this naturopath decided that i did not have an infection and that the repeated courses of antibiotics had stripped my insides of protective gut flora and i was bleeding from internal wounds not related to any infection at all. he suggested acidophilus and to drink a bear berry tea morning and night and my symptoms were gone that day and didn't come back, and if i ever feel a twinge, in goes the acidophilus and it goes away. haven't even had a twinge in forever coz i take the stuff regularly now and also i stopped being vegan and eat yogurt with it in and all that. it seemed to me like there was much more public awareness of GI health/microflora when i was in australia, which was good to see.
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Postby Chris55 » Sat Jan 06, 2007 1:38 pm

Jimmylegs--your symptoms ARE the symptoms of Intersistial Cystitis! As I said, I can completely cure a flare-up with diet/supplements. The medical field says I don't...that diet has nothing to do with it...and we have nothing to help you. How stubborn and arrogant! As I say over and over...what HARM can trying natural do in the end? And hey--gee--it JUST might help! Good for you!

Oh--just so we are both "clear" here...we have an "autoimmune disease".
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silly doctors

Postby jimmylegs » Sat Jan 06, 2007 1:42 pm

weird they always said mine was a UTI but i don't think they ever checked for bacteria, they just found the blood and diagnosed infection, that was that.

haha interstitial cystitis is autoimmune huh! whatever eh. hehehe yea when i told the nurse practitioner at my clinic at the time, that i had stopped doing antibiotics and started acidophilus and it all got better, she told me it was a coincidence. like, whatEVER :roll:
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No urine test for insulin!

Postby lyndacarol » Sat Jan 06, 2007 2:52 pm

OK, it's me--the insulin-girl. You know where this will end up, don't you?

Two years ago I had all your same symptoms, Chris and Legs. Urinalysis was done, no bacteria was found. That with the constant gurgling started my suspicion of excess insulin.

How maddening--the doctor can check for glucose in the urine, but, to my knowledge, there is no test for insulin in the urine!!! Although it is accepted that in diabetes the body attempts to excrete excess blood sugar in the urine, I think the body does the same with the highly irritating excess insulin. And this substance greatly irritates the kidneys and bladder causing the burning sensation and frequency. I think this leads eventually to incontinence--insulin causes smooth muscles to thicken.

I know I have recommended this before, and although I don't agree with everything in his writings, there are many good points in Insulin: Our Silent Killer by Thomas Smith, which I obtained through www.healingmatters.com
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symptoms

Postby jimmylegs » Sat Jan 06, 2007 2:58 pm

hey there LC how did you get rid of the symptoms you had two years ago?
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re: symptoms

Postby lyndacarol » Sat Jan 06, 2007 3:04 pm

Legs, I didn't. I still have the burning sensation, the frequency. I have tried diet and just about everything else I can think of. I think the symptoms are still there because I can't get the insulin level down! I still gurgle!!!
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interesting!

Postby jimmylegs » Sat Jan 06, 2007 3:06 pm

hey i searched on insulin and acidophilus together and came up with this neat diabetes study currently recruiting... any men here live in denmark and also have diabetes?!

http://clinicaltrials.gov/show/NCT00413348

Numerous studies have shown an association between insulin-resistance in type 2 diabetes and chronic low-grade inflammation. Some probiotics have an anti-inflammatory properties. Ingestion of probiotics might therefore, due to this property, increase sensitivity to insulin.

In this study type 2 diabetics (N=24) and healthy control (N=24) are given the probiotic bacteria Lactobacillus Acidophilus NCFM for four weeks. The anti-inflammatory effect is examined by evaluating the inflammatory response (White blood cell count, plasma-cytokines) to an iv injection of endotoxin (0,3 ng/kg) before and after the intervention. Also the insulin-sensitivity is measured with an hyperinsulinemic euglycemic clamp before and after L. acidophilus NCFM.
Last edited by jimmylegs on Sat Jan 06, 2007 3:11 pm, edited 1 time in total.
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LC you poor thing!

Postby jimmylegs » Sat Jan 06, 2007 3:08 pm

that is nasty LC!! omg, you have had to put up with it for so LONG! do you take lots of acidophilus, and if so, maybe chris can let you in on what sorted her out?
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oops

Postby jimmylegs » Sat Jan 06, 2007 3:12 pm

oh wait i guess if you also have ms you'd be excluded from the study... my bad
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probiotic

Postby jimmylegs » Sat Jan 06, 2007 3:15 pm

i take a daily, btw, it's this udo's choice super 8 hi-potency probiotic, it has 8 strains (45% lactobacillus acidophilus) and each pill is 30 billion viable cells.
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Postby Chris55 » Mon Jan 08, 2007 6:54 am

My supplement routine for IC flare-ups is relatively easy and not too cost-prohibitive. The diet regimne, however, is a bitch! But hey, it works and I only have to stay on it until the flare-up gets under control.

NONE of the following: wheat, dairy, fruit (except blueberry and honey dew melon), nothing acidic of course, NO corn, alcohol, gobs of water and cranberry juice. So, I use no seasoning of any kind, ate rice, fresh vegies and the limited fruit. Combined with my supplements it works. One interesting product I use is Collodial Silver. This is a "natural" antibiotic. It seems to REALLY help with a particularly LONG flare-up. I gave the rest to my daughter with MS (who didn't take it, of course!). I have not replaced it so I don't use it with my flare-ups now (which last less than 12 hours.)

If you want the supplements, let me know! Chris
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wow tough deal

Postby jimmylegs » Mon Jan 08, 2007 7:18 am

chris that sounds intense, i don't think i could possibly have the same exact problem despite the similar symptoms! all i had to do was take acidophilus for one day and it was done. and like i said, a couple of times i felt a twinge and took one more acidophilus pill and it would not even get properly started before it was gone again. and i haven't had to deal with it at all in years now, all my grief with it was in the early 90s.
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Postby Chris55 » Mon Jan 08, 2007 9:36 am

Will, Jimmylegs, I will definitely have to try your "cure"--much easier! Exactly what did you take? how often? etc. Thanks
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simple prescription

Postby jimmylegs » Mon Jan 08, 2007 10:12 am

heya chris, well it still could be that we have different problems. but the "no bacteria" finding certainly does sound suspicious. have you had many courses of antibiotics prescribed in the past? anyway my doc did tell me that "no bacteria" was exactly the problem that was causing my symptoms.

he told me to take acidophilus (ie populate my insides with the good bacteria needed there) morning and night, ("sisu" was the brand he recommended way back then... but as i said i'm on a fierce "udo's choice" probiotic formula, including acidophilus, now).

he also suggested i brew a cup of bear berry (uva ursi) leaf tea morning and night.

i was supposed to follow this regimen for a few days til i got sorted out. i only had to do it for one, maybe two days. i never bothered with the tea when i felt any little twinge once or twice over later years, the acidophilus did it all by itself. chris i really hope this helps you out!

take care!
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