my recovery story

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my recovery story

Postby vanislegirl on May 26th, 2009, 10:29 am

Hello, I haven't been to this site for awhile, but I am now recovered from Cramp Fasciculation Syndrome, and I wanted to share my story with you all....Although I wasn't always on this site, it did help me through some very dark times. Here is a copy of the post I made on Inspire.com, I hope it can help some of you! My thoughts and prayers are with you all!


"Hello all...
I have been lurking on this thread for about a year now, and have been dealing with Cramp-Fasciculation Syndrome (or neuromyotonia) since November 2003. I have had a fairly severe case of it, but I am now almost completely recovered and wanted to share my journey with you.

My symptoms began with hot burning pain in my calves, accompanied by twitching and cramping and overall muscle soreness and fatigue. This escalated to widespread fasciculations in the order of about 10,000 per day, continual muscle pain in my legs, along with nerve pain, buzzing, cramping and excessive sweating. At my worst, I was on crutches and I was limping so much and couldn't go up stairs or inclines. I reduced my work days to 2 (I'm a teacher), and eventually took a total leave of absence. I gained 20 lbs due to inactivity.

My family doctor was baffled as to what was wrong with me. I was sent to a rheumatologist, who ruled out fibromyalgia or lupus. I was sent to a neuro who told me it was stress and to come back if I started aspirating my food (jerk!). I was then sent to another Neurologist in Victoria BC who is an expert on peripheral nerve disorders and he gave the diagnosis of Cramp-Fasciculation Syndrome, and also told me that the terms Neuromyotonia and Isaac's Syndrome are interchangeable. I had the diagnosis confirmed by a 3rd neuro at the University of British Columbia Neuromuscular Clinic. I began treatment with 1800 mg/day of Gabapentin, eventually increasing to 3000 mg of Gabapentin per day. I also took 3.5 mg of Zopiclone at night in order to get a restful sleep. This was in April of 2005.

For 3.5 years, I continued this course of treatment, as well as pursuing yoga, good nutrition and meditation as a means to help my condition. I could not go more than 4 hours without medication, and continued to suffer episodic flare-ups that would leave me sidelined for several days at a time. I felt like 45 going on 90.

Sometimes, I felt that I was getting better, and when I left my job for good in September 2007, I was able to reduce my stress and rest more, but really I was not getting any better, just getting better at managing my symptoms. Overall, the condition and my overall health seemed to be worse.

This past January, after an especially stressful Christmas (excessive snow, son's surgery and long stay in hospital, bouts of seasonal flu, etc.) I had a really severe flare up of my symptoms. This time, the mental and emotional toll of being so worn down from this illness really got to me, and I thought I would lose my my mind. My anxiety level was through the roof, and I began having panic attacks. The Gabapentin was not helping the increase in my physical symptoms, and I felt that there was no longer any treatment that would help me live a normal life....my poor husband and family watched me withdraw.

Around the middle of February, I read a book called "The Ultramind Solution" by Dr. Mark Hyman, MD. His theory is that when we have chronic illness, depression, anxiety and many other conditions, it is because our brain chemistry has gotten screwed up because of deficiencies and stresses within our bodies, and that it can be corrected through supplementation with essential fatty acids, Omega-3s, amino acids, and vitamins and minerals. He is a medical doctor who himself suffered from chronic fatigue. He lays out a very specific plan for supplementation and detoxification. I thought it was worth a shot. I also made the decision to get off of all my meds, as they just were not helping me, and I felt like a complete, non-functioning ZOMBIE!

It took me 3 weeks to wean off of the Gabapentin, 2 weeks to get off the Zopiclone. I definitely felt more clear minded, and the anxiety lessened A LOT! However, I just had to tolerate my pain and ignore my twitching, which was now hanging around several hundred fasciculations a day.

Upon reading Dr. Hyman's book, I became interested in his comments about a very important peptide in the amino acid family called GLUTATHIONE. Please, please, please....do yourself a favour and educate yourself about the importance of this molecule and its relation to chronic illness. When our glutathione levels are low ( and they are in anyone with chronic illness), your body cannot detoxify itself and make its own glutathione ....it is the master anti-oxidant in the body and crucial to cellular health.

Anyways, here is the crux of my story.....I have a friend who is a recently retired RN of 35 years and she is involved with a company in Montreal that produces a product called IMMUNOCAL. It is a whey protein isolate that contains an amino acid called cysteine.....this is the only way to promote glutathione levels in the body, and is scientifically proven to raise glutathione levels in the body. It is Health Canada approved, and is listed in the Physicians Desk Reference in the US, and the Compendium of Pharmaceuticals and Specialties in Canada.

I began taking this in March at 2 pouches a day ( you mix it with OJ and drink it). It is now 2 months since I have been on it, and I tell you ... I feel that I have been given a miracle and been healed of this stupid condition. I have absolutely no pain. I am clear headed, no more brain fog. I have LOADS of energy. I go days without having a single twitch, and often only have 2 or 3 twitches a day (almost normal!) I feel my creative energy and drive coming back, and am cheerful, positive and fun once again!!! My husband can't believe it....he is now taking it too, just to promote good health, and so is my son. I can't say enough about this stuff.....I'm not trying to sell it or anything, but you can investigate it for yourself. I thank God for this friend of mine getting me onto it, as it has really changed my life, and I really wanted to get the word out to you people, so that it might help you too. Good luck!"
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Re: my recovery story

Postby nicolelasa on May 26th, 2009, 12:51 pm

Thanks worth a try! :D
If Its free It's for me I'll take three.
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Re: my recovery story

Postby worriedsick2009 on May 27th, 2009, 2:05 pm

do all whey protein mixes have this? I used to supp whey protein, and I'm starting on it again.
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Re: my recovery story

Postby vanislegirl on May 28th, 2009, 10:19 am

Sorry WorriedSick... I thought I replied to you but my post does not seem to be showing up.

The whey protein that you buy at a health food store or at Costco is not the same as this stuff. This is a pharmaceutical grade of undenatured whey protein that contains cysteine....apparently it takes 500 litres of raw unpasteurized milk to make 1 pound of Immunocal. The stuff you buy in the big jars is a good source of protein, but as I understand it, it does not provide the cysteine necessary to promote glutathione production. I am going to paste in the pharmaceutical info about Immunocal, as I'm not a doctor or a pharmacist :)


IMMUNOCAL® (Immunotec)
2003
NUTRACEUTICAL
(Bonded cysteine supplement)
Powder Sachets

DESCRIPTION and CLINICAL PHARMACOLOGY Back to top of page

IMMUNOCAL® is a U.S. patented natural food protein concentrate in the FDA category of GRAS (generally recognized as safe) which assists the body in maintaining optimal concentrations of glutathione (GSH) by supplying the precursors required for intracellular glutathione synthesis. It is clinically proven to raise glutathione values (Lands et al, 1999).

Glutathione is a tripeptide made intracellularly from its constituent amino acids L-glutamate, L-cysteine and glycine. The sulfhydryl (thiol) group (SH) of cysteine serves as a proton donor and is responsible for the biological activity of glutathione. Provision of this amino acid is the rate-limiting factor in glutathione synthesis by the cells since cysteine is relatively rare in foodstuffs and furthermore, if released as the free amino acid, is toxic and spontaneously catabolized in the gastrointestinal tract and blood plasma.

Immunocal® is a bovine whey protein isolate specially prepared so as to provide a rich source of bioavailable cysteine. Following digestion, the cysteine remains as the stable form cystine (2 molecules of cysteine linked by disulfide bond) and glutamylcystine. After absorption, these dipeptides travel safely in the blood stream and readily enter the cells to release free cysteine for intracellular glutathione synthesis. Immunocal® can thus be viewed as a cysteine delivery system.

The disulphide bond in cystine is pepsin and trypsin resistant but may be split by heat, low pH or mechanical stress releasing free cysteine. When subject to heat or shearing forces (inherent in most extraction processes), the fragile disulfide bonds within the peptides are broken and the bioavailablility of cysteine is greatly diminished.

Glutathione is a tightly regulated intracellular constituent and is limited in its production by negative feedback inhibition of its own synthesis through the enzyme gamma-glutamylcysteine synthetase, thus greatly minimizing any possibility of overdosage.

Glutathione has multiple functions:

It is the major endogenous antioxidant produced by the cells, participating directly in the neutralization of free radicals and reactive oxygen compounds, as well as maintaining exogenous antioxidants such as vitamins C and E in their reduced (active) forms.
Through direct conjugation, it detoxifies many xenobiotics (foreign compounds) and carcinogens, both organic and inorganic.
It is essential for the immune system to exert its full potential, e.g. (1) modulating antigen presentation to lymphocytes, thereby influencing cytokine production and type of response (cellular or humoral) that develops, (2) enhancing proliferation of lymphocytes thereby increasing magnitude of response, (3) enhancing killing activity of cytotoxic T cells and NK cells, and (4) regulating apoptosis, thereby maintaining control of the immune response.
It plays a fundamental role in numerous metabolic and biochemical reactions such as DNA synthesis and repair, protein synthesis, prostaglandin synthesis, amino acid transport and enzyme activation. Thus, every system in the body can be affected by the state of the glutathione system, especially the immune system, the nervous system, the gastrointestinal system and the lungs.
INDICATIONS AND USAGE Back to top of page

IMMUNOCAL® is a natural food su
pplement and as such is limited from stating medical claims per se. Statements have not been evaluated by the FDA. As such, this product is thus not intended to diagnose, cure, prevent or treat any disease.

CONTRAINDICATIONS

IMMUNOCAL® is contraindicated in individuals who develop or have known hypersensitivity to specific milk proteins.

PRECAUTIONS Back to top of page

Each sachet of IMMUNOCAL® contains nine grams of protein. Patients on a protein-restricted diet need to take this into account when calculating their daily protein load. Although a bovine milk derivative, IMMUNOCAL® contains less than 1% lactose and therefore is generally well tolerated by lactose-intolerant individuals.

WARNINGS

Patients undergoing immunosuppressive therapy should discuss the use of this product with their health professional.

ADVERSE REACTIONS

Gastrointestinal bloating and cramps if not sufficiently rehydrated. Transient urticarial-like rash in rare individuals undergoing severe detoxification reaction. Rash abates when product intake stopped or reduced. Back to top of page

OVERDOSAGE

Overdosing on IMMUNOCAL® has not been reported.

DOSAGE AND ADMINISTRATION

For mild to moderate health challenges, 20 grams per day is recommended. Clinical trials in patients with AIDS, COPD, cancer and chronic fatigue syndrome have used 30-40 grams per day without ill effect. IMMUNOCAL® is best administered on an empty stomach or with a light meal. Concomitant intake of another high protein load may adversely affect absorption.

RECONSTITUTION

IMMUNOCAL® is a dehydrated powdered protein isolate. It must be appropriately rehydrated before use. Remains bioactive up to 12 hours after mixing. DO NOT heat or use a hot liquid to rehydrate the product. DO NOT use a high-speed blender for reconstitution. These methods will decrease the activity of the product.

Proper mixing is imperative. Consult instructions included in packaging.

HOW SUPPLIED

10 grams of bovine milk protein isolate powder per sachet.

30 sachets per box.

STORAGE

Store in a cool dry environment. Refrigeration is not necessary.

Patent no.'s: 5,230,902 - 5,290,571 - 5,456,924 - 5,451,412 - 5,888,552

REFERENCES

Baruchel S, Viau G, Olivier R. et al. Nutraceutical modulation of glutathione with a humanized native milk serum protein isolate, Immunocal®: application in AIDS and cancer. In : Oxidative Stress in Cancer, AIDS and Neurodegenerative Diseases. Ed.; Montagnier L, Olivier R, Pasquier C. Marcel Dekker Inc. New York, 447-461, 1998
Bounous G, Kongshavn P. Influence of protein type in nutritionally adequate diets on the development of immunity. In Absorption and Utilization of Amino Acids Vol.II. Ed. M. Friedman. CRC Press, Inc., Fla. 2:219-32, 1989
Bounous G, Gold P. The biological activity of undenatured whey proteins: role of glutathione. Clin Invest Med 14:296-309, 1991
Bounous G, Baruchel S, Falutz J. Gold P. Whey proteins as a food supplement in HIV-seropositive individuals. Clin Invest Med. 16:3; 204-209, 1992
Bounous G. Whey protein concentrate (WPC) and glutathione modulation in cancer treatment. Anticancer Res. 20:4785-4792,2000
Bounous G. Immunoenhancing properties of undenatured milk serum protein isolate in HIV patients. Int. Diary Fed: Whey: 293-305, 1998
Droge W, Holm E. Role of cysteine and glutathione in HIV infection and other diseases associated with muscle wasting and immunological dysfunction. FASEB J: 11(13):1077-1089, 1997
Herzenberg LA, De Rosa SC, Dubs JG et al. Glutathione deficiency is associated with impaired survival in HIV disease. Proc Natl Acad Sci 94:1967-72,1997
Kennedy R, Konok G, Bounous G et al.. The use of a whey protein concentrate in the treatment of patients with metastatic carcinoma: A phase 1-II clinical study. Anticancer Res. 15:2643-50,1995
Lands LC, Grey VL, Smountas AA. Effect of supplementation with a cysteine donor on muscular performance. J. Appl. Physiol. 87:1381-1385, 1999
Locigno R, Castronovo V. Reduced glutathione System: Role in cancer development, prevention and treatment. International Journal of Oncology 19:221-236, 2001
Lomaestro B, Malone M. Glutathione in health and disease: pharmacotherapeutic issues. Ann Pharmacother 29: 1263-73,1995
Lothian B, Grey V, Kimoff RJ, Lands. Treatment of obstructive airway disease with a cysteine donor protein supplement: a case report. Chest 117:914-916, 2000
Meister A. Glutathione. Ann Rev Biochem 52:711-60,1983
Peterson JD, Herzenberg LA, Vasquez KK, Waltenbaugh C. Glutathione levels in antigen-presenting cells modulate Th1 versus Th2 response patterns. Proc.Natl. Acad. Sci. 95:3071-3076, 1998
Watanabe A, Higachi K, Yasumura S. et al. Nutritional modulation of glutathione level and cellular immunity in chronic hepatitis B and C. Hepatology. 24:597A, 1996
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Re: my recovery story

Postby vanislegirl on May 28th, 2009, 12:11 pm

Just a funny aside.....yesterday I awoke with a really sore calf muscle and my old fears were raised and I thought "crap! what is going on now?" since I haven't had any pain at all for over 2 months. Well, it turns out that it was just a pulled muscle from stomping too hard on the shovel in the garden the night before! Bliss! Actual pain from being able to do real activities....I'll take that any day!!!
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Re: my recovery story

Postby vanislegirl on May 29th, 2009, 11:27 am

I would like to clarify that I am not out to be in the business of selling Immunocal, and I do not make any money from them. I just paid my distributor fees so that I could get the product cheaper....I just really don't want any of you to suffer, and if this can help you like it has helped me, I will be thrilled. I suggest that if you want to try the product, you contact Immunotec directly at www.immunotec.com

Good luck, I will be happy to answer any questions you have about this product.

Sincerely

Jeannie
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Re: my recovery story

Postby lindahcohen on June 2nd, 2009, 7:03 pm

Wow this is interesting. I began seeing a "witch doctor" when I got this almost 4 years ago, and he finally put me on reduced glutathione capsules, mostly to reduce inflammation from seasonal allergies. I had to let them dissolve in my mouth (ICK) because it's hard to get your body to absorb it. While I was taking them i had my LONGEST relapse - over 6 months. Then I stopped taking them because allergy season was over. I started again w/my BFS symptoms. I recently began taking the reduced glutatione again, and my twitches have been gone for a week.

Don't know what this adds, but just my 2 cents. I'm going to try this other stuff because it's most likely easier to absorb...
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Re: my recovery story

Postby vanislegirl on June 3rd, 2009, 12:08 am

WOW! That is SO interesting! I've never heard of "reduced glutathione" before, although I do know that you can't take glutathione through the digestive tract. Some people try to build their glutathione by taking N-acetylcysteine, and that does work too, although apparently there are a lot of unpleasant side effects. Good "witch" doctor you have there.....I guess you'll keep taking it, huh?
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Re: my recovery story

Postby johnny999 on May 12th, 2011, 11:37 pm

June 3rd 2009, my HS graduation date :P

A marker of my glutathione was found to be very low a while ago, so your 'success' story gives me a bit of hope ..

Been trying the NAC for a week with no results yet (Probably takes ages to restore the cellular levels) , but NAC is pretty acidic (try mixing some powder with a tall glass of water - instant heartburn) . the pills are fine, but makes you wonder if your tummy is going to be corroded through after continued use.
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Re: my recovery story

Postby ImOK on May 13th, 2011, 7:15 pm

Hey vanislegirl, I remember you! Good to hear that you are doing so well. I am much improved also but that is a long story so I'll get to the point. Protein supplements did seem to help me although my neuro said he saw no relationship. I also found that it helped to start eating meat again which can bring up your cysteine levels. I just looked at the powder I use in my smoothies and it has some also. So there could be a connection for me. I tried to find a link between bcfs and the cramping and protein intake but was told that only very low protein levels could cause muscle cramps; however it seemed otherwise for me so I have continued eating lean meats and my whey protein powder. It makes sense as many of us accept that bfs/bcfs is some kind of cascade effect as it follows illness, stress, injury, etc. so that plays into this line of reasoning. Again - good to hear from you and also that you are better. :D
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