35 replies to this topic

[cwhite]

I have no idea why this rare autoimmune disease has struck me, most of my life I have been very healthy and I've been reading these forums for a few years now, reading all the great posts about life extension and good health. I'm a 30 years old guy who has a pregnant wife and I cannot afford to be sick! I'm willing to do anything to stay healthy and beat this disease.

About 6 months ago, I started to experience slight muscle pain during the early morning and about 1 month ago, my fingers felt really cold, and I noticed the color disappearing from them when I touched something cold. I looked this up online and I found it to be Raynauld's phenomenon. Went to the doctor and he said it's unusual for someone like me to experience this and did some detailed blood work. Basically the results came back with the following:

Speckled ANA Detected
Nuclear Antibodies Titer 1:2560
Anti-Ribonuclear Protein Antibodies (RNP) Detected
No other auto-antibodies were detected.
Lymphocytes: 0.9 (range 1.0-4.0)
Rheumatoid Factor (RD): 21 elevated (range 0-14)
IgE: 206 range (<20) (I have had this elevated since I was 20 year old)
Homocysteine: 15.3 (range <12) ( No idea why this is raised, and it worries me)

CRP Normal
ESR Normal
Lipid studies : Optimal
Complement C3 Normal
Complement C4 Normal
Fibrinogen: 2.90 Normal (Range 2-4)

I was sent to a Rheumatologist who basically told me I have Mixed Connective Tissue Disease an Autoimmune disease consisting of a combination of symptoms of Lupus, Rheumatoid Arthritis, and Scleraderma and a few others.

He said that if my muscle aches get worse or if the Creatine Kinease is elevated (Results pending) he would put me on Hydroxychloroquine (Plaquenil) and maybe Methotrexate (Rheumatrex).

I asked him about diet, nutrition and anything outside of pharmaceuticals that could change the course of the disease, he said “nothing”.

I have always believed that pharmaceuticals are not the only things that can treat and reverse disease, and I know that nutrition and supplements could possibly modify the disease without the serious side effects. All the drugs used in treating MCTD have seriously awful side effect profiles and I refuse to get to a point where im forced to take them.

I guess I'm in position right now, where I'm still healthy and my body hasn't yet been ravaged, I know serologicaly and my initial symptoms indicate that my immune system is malfunctioning and can potentially kill me. From my research the survival rate for at least 10 years is 80%.

I'm asking anyone on this forum to help me understand or maybe someone who has experience in autoimmune diseases to help me find alternative means to pharmaceuticals that can change the course of the disease, I'm open to anything.

From my initial Research it appears that I should

Start CR.
Eat more cruciferous vegetables.
Lower my protein intake.
Supplement with Folate + B12
Exercise daily.

My main goals are to fight inflammation and try to modulate my immune system and force MTCD into remission.

Also one interesting website I found , www.roadback.org (Antibiotics treatments for Rheumatic Diseases)

What do you guys recommended in terms of nutrition, lifestyle or supplements that would help me in fighting this autoimmune disease?

Edited by cwhite, 08 November 2009 - 02:51 AM.

[niner]

Having a healthy level of 25-hydroxy vitamin D3 couldn't hurt. In your case I would shoot for a level of 50-60 ng/ml. This will probably require about 3000 IU/day of vitamin D3 in a gelcap (oil-based) formulation. Your doctor can order the blood test to get the level. It's not terribly expensive, and the vitamin itself is dirt cheap. I use the one from Now Foods, which I get at iherb. Any gelcap will do, though.

[cwhite]

Having a healthy level of 25-hydroxy vitamin D3 couldn't hurt. In your case I would shoot for a level of 50-60 ng/ml. This will probably require about 3000 IU/day of vitamin D3 in a gelcap (oil-based) formulation. Your doctor can order the blood test to get the level. It's not terribly expensive, and the vitamin itself is dirt cheap. I use the one from Now Foods, which I get at iherb. Any gelcap will do, though.

Actually I did get my vitamin D level checked it was 36 ng/ml. I was doing some research and I found this abstract which scares me in regards to supplementing with vitamin D3. Any ideas..

Vitamin D research is discussed in light of the hypothesis that the lower average levels of vitamin D frequently observed in autoimmune disease are not a sign of deficiency. Instead, it is proposed that the lower levels result from chronic infection with intracellular bacteria that dysregulate vitamin D metabolism by causing vitamin D receptor (VDR) dysfunction within phagocytes. The VDR dysfunction causes a decline in innate immune function that causes susceptibility to additional infections that contribute to disease progression. Evidence has been accumulating that indicates that a number of autoimmune diseases can be reversed by gradually restoring VDR function with the VDR agonist olmesartan and subinhibitory dosages of certain bacteriostatic antibiotics. Diseases showing favorable responses to treatment so far include systemic lupus erythematosis, rheumatoid arthritis, scleroderma, sarcoidosis, Sjogren's syndrome, autoimmune thyroid disease, psoriasis, ankylosing spondylitis, Reiter's syndrome, type I and II diabetes mellitus, and uveitis. Disease reversal using this approach requires limitation of vitamin D in order to avoid contributing to dysfunction of nuclear receptors and subsequent negative consequences for immune and endocrine function. Immunopathological reactions accompanying bacterial cell death require a gradual elimination of pathogens over several years. Practical and theoretical implications are discussed, along with the compatibility of this model with current research.

[gattaca]

he would put me on Hydroxychloroquine (Plaquenil) and maybe Methotrexate (Rheumatrex).

What do you guys recommended in terms of nutrition, lifestyle or supplements that would help me in fighting this autoimmune disease?

Your rheumatologist is incompetent and behind the times, get a new one. The fact that he's still even interested in methotrexate given the other, better off label treatments for MCTD is a huge, huge red flag that his practice is still in 1996. Really. Get rid of him. You should be on plaquenil right now, and cellcept before trying a liver killer like methotrexate. Fish oil and vitamin D have been shown to help, as have n-a-c and DHEA.

Best of luck. Look into "Benlysta" helping you out in late 2010.

[rwac]

Be careful with CR. It's known to reduce immune function somewhat.

Have you been bitten by a tick by any chance ?
Have you been tested for various infectious diseases ? (HHV-6, EBV, Lyme, CMV, etc etc)

Actually, it's very possible that most autoimmune diseases are caused by infectious agents of some sort.
So definitely consider antibiotic therapy as a possibility.

Although preferably you want to know what you're infected with before you start treating it.

[aaron_e]

cordyceps can help with autoimmune conditions i think.
also get lots of sun. do you have any allergies beyond your autoimmune conditions? maybe you have adrenal fatigue and are not producing enough cortisol, or you might have a food allergy that is draining your cortisol reserves? also look into a high quality probiotic supplement, most of your lymphatics are attached to your intestines and proper bacteria balance can calm your immune system. article that mentions probiotics for autoimmune diseases: http://www.npr.org/t...storyId=5568701

[cwhite]

Your rheumatologist is incompetent and behind the times, get a new one. The fact that he's still even interested in methotrexate given the other, better off label treatments for MCTD is a huge, huge red flag that his practice is still in 1996. Really. Get rid of him. You should be on plaquenil right now, and cellcept before trying a liver killer like methotrexate. Fish oil and vitamin D have been shown to help, as have n-a-c and DHEA.

Best of luck. Look into "Benlysta" helping you out in late 2010.

You might be right, some of the things he said did conflict with my own medical research about MCTD. I will look for another one. Thanks for the advise. You mentioned better off label treatments for MCTD, do you have any particular ones in mind that I should bring up with my new rheumatologist.

Be careful with CR. It's known to reduce immune function somewhat.

Have you been bitten by a tick by any chance ?
Have you been tested for various infectious diseases ? (HHV-6, EBV, Lyme, CMV, etc etc)

Actually, it's very possible that most autoimmune diseases are caused by infectious agents of some sort.
So definitely consider antibiotic therapy as a possibility.

Although preferably you want to know what you're infected with before you start treating it.

I live in Australia, and I pretty sure that I have never been bitten, but I have no idea.
Haven't tested for any infectious diseases, are there any one's I should focus on?
Antibiotic therapy does seem like a low risk alternative to the immunosuppressive drugs, but the momement I would say my disease is not highly active at least my esr, crp, and other inflammation markets are normal.

cordyceps can help with autoimmune conditions i think.
also get lots of sun. do you have any allergies beyond your autoimmune conditions? maybe you have adrenal fatigue and are not producing enough cortisol, or you might have a food allergy that is draining your cortisol reserves? also look into a high quality probiotic supplement, most of your lymphatics are attached to your intestines and proper bacteria balance can calm your immune system. article that mentions probiotics for autoimmune diseases:

I'm not sure if sun is a good thing for me, since sun can exacerbate lupus which I feel MTCD is closely related too. I'm still very confused about the vitamin D issue.
Yes, my IgE is 200 normal range is <20 therefore I have some kind of allergy in my body. Since I was 20 my nose has been partly blocked and I have post nasal drip. I also have very mild serb derm on my face. How is cortisol related to autoimmune disease? Probiotics sound good. Thanks for the advise.

[Matt]

I dont have time to go into it but i would go on a raw food calorie restriction diet, and take supplements.... Calorie restriciton in animals have been shown to ameliorate conditions like lupus, sjogrens syndrome, MS. etc etc.. I wouldn't worry about getting infections when on CR either.

[cwhite]

I dont have time to go into it but i would go on a raw food calorie restriction diet, and take supplements.... Calorie restriciton in animals have been shown to ameliorate conditions like lupus, sjogrens syndrome, MS. etc etc.. I wouldn't worry about getting infections when on CR either.

What supplements would you recommend.

[aaron_e]

How is cortisol related to autoimmune disease?

cortisol is your body's natural immune suppressant and is normally manufactured in your adrenal glands. synthetic cortisol is prescribed for various autoimmune and severe allergy conditions: http://www.drugs.com.../cortisone.html
it would probably be best to identify what is irritating your system and eliminate it. wheat, soy, and pasteurized dairy would be good places to start. get an ELISA test to see if you have any IgG reactions also. I am highly allergic to eggs and didn't realize it until i got tested. IgG reactions are smoldering delayed reactions that sap your vitality. other allergic reactions are body aches, lowered thyroid function, and depression. I have these kinds of reactions to spinach. also I recommend reading the book Adrenal Fatigue by James Wilson. Its a good starting point for issues that can be caused by weak adrenals.

[Lufega]

You can probably benefit from elevating vitamin D levels. 36 ng/ml is low.

Spend A LOT of time reading this site: Connective Tissue Disorder Site

It has invaluable information regarding connective tissue problems. Like Rwac said above, I would investigate recent or past infections with any of the herpes viruses, lyme disease, etc. This is likely the source of the problem. I myself thought I had a variant of Marfan syndrome because I had most of the physical traits and s&s. It turns out my connective tissue problems are caused by an impairment of the autonomic nervous system, probably inflicted on by several members of the herpes family. What this means, CT problems can be caused by almost anything!

I also have high creatine kinase levels and the resulting weakness and muscle wasting. This, in my case, is caused by improper acetylcholine transmission in the neuro-muscular junction. This is one element of autonomic dysfunctionMestinon, an acetylcholinesterase inhibitor, helps. So does CoQ10/Ubiquinol. Have your Doctor test you for dysautonomia by doing a tilt table test, checking for low blood pressure, orthostatic hypotension, hyponatremia, etc.

The biggest help for me came in the form of magnesium (400-1000 mg daily) and manganese ( up to 10 mg daily). Both are essential for connective tissue integrity. Green/white tea also helps protect connective tissue. I also suggest doing more testing so you know exactly how this disease is affecting your different organ systems, so you can intervene appropriately.

One more thing, diagnosing connective tissue disorders can be ambiguous so I would get a second opinion. Chances are, you might get diagnosed with a different CTD, by different doctors.

This is a topic of interest for me so PM me if you have questions, additional finding, etc.

[VespeneGas]

http://coolinginflam...ion-relief.html

http://coolinginflam...infections.html

Just some food for thought.

[niner]

Having a healthy level of 25-hydroxy vitamin D3 couldn't hurt. In your case I would shoot for a level of 50-60 ng/ml. This will probably require about 3000 IU/day of vitamin D3 in a gelcap (oil-based) formulation. Your doctor can order the blood test to get the level. It's not terribly expensive, and the vitamin itself is dirt cheap. I use the one from Now Foods, which I get at iherb. Any gelcap will do, though.

Actually I did get my vitamin D level checked it was 36 ng/ml. I was doing some research and I found this abstract which scares me in regards to supplementing with vitamin D3. Any ideas..

Vitamin D research is discussed in light of the hypothesis that the lower average levels of vitamin D frequently observed in autoimmune disease are not a sign of deficiency. Instead, it is proposed that the lower levels result from chronic infection with intracellular bacteria that dysregulate vitamin D metabolism by causing vitamin D receptor (VDR) dysfunction within phagocytes. The VDR dysfunction causes a decline in innate immune function that causes susceptibility to additional infections that contribute to disease progression. Evidence has been accumulating that indicates that a number of autoimmune diseases can be reversed by gradually restoring VDR function with the VDR agonist olmesartan and subinhibitory dosages of certain bacteriostatic antibiotics. Diseases showing favorable responses to treatment so far include systemic lupus erythematosis, rheumatoid arthritis, scleroderma, sarcoidosis, Sjogren's syndrome, autoimmune thyroid disease, psoriasis, ankylosing spondylitis, Reiter's syndrome, type I and II diabetes mellitus, and uveitis. Disease reversal using this approach requires limitation of vitamin D in order to avoid contributing to dysfunction of nuclear receptors and subsequent negative consequences for immune and endocrine function. Immunopathological reactions accompanying bacterial cell death require a gradual elimination of pathogens over several years. Practical and theoretical implications are discussed, along with the compatibility of this model with current research.

This abstract is from the an article by PJ Albert and coworkers in the Sep 2009 Ann. NYAS. Albert is a buddy of Trevor Marshall, who seems to be the father of this whack hypothesis. Albert is an author of a paper in in the same edition by Marshall and his groupie, Amy Proal. I would pay it little heed. The Wikipedia listing for Trevor Marshall has this to say:

Marshall's theories are considered highly controversial. Criticism of the Marshall Protocol stems from an absence of controlled clinical studies that demonstrate the Marshall Protocol's efficacy. To date, only one paper concerning Marshall's theories, written by Marshall himself, has been submitted for publication in a medical journal. That paper explained a potential framework for Marshall's pathogen-based theory of disease, rather than providing evidence that this theory can be quantified in a laboratory or in clinical settings. Much of what Marshall recommends also directly contradicts a large and growing body of evidence that supports the positive role of vitamin D in the human body.

Rosen and Bagwell, in their 2007 review[5] of treatments for sarcoidosis, argued that Marshall's 2003 paper, "Antibiotics in sarcoidosis—reflections of the first year" has "serious deficiencies," and that the data has not been peer-reviewed nor the results quantified.

Dr. John Cannell of the Vitamin D Council spoke out against the Marshall Protocol in the April 2008 edition of his Vitamin D newsletter[47], stating that "No one in the vitamin D field takes [Marshall] seriously."

This is what you see when real scientists look at the relationship between vitamin D and autoimmune disease:

Nutr Res Rev. 2009 Oct 28:1-16. [Epub ahead of print]
Epidemiology of vitamin D in health and disease.

Wang S.

Department of Clinical Pathology, Cleveland Clinic, Cleveland, OH, USA.

Results from ecological, case-control and cohort studies have shown that vitamin D reduces the risk of bone fracture, falls, autoimmune diseases, type 2 diabetes, CVD and cancer. However, there is still epidemic vitamin D insufficiency especially among individuals living at high latitudes or with dark skin. Serum levels of 25-hydroxyvitamin D (25(OH)D) are considered the best biomarker of vitamin D nutritional status. Appropriate sunshine exposure or oral supplementation is necessary to maintain sufficient vitamin D status, which is generally accepted as serum 25(OH)D>75 nmol/l. Immunoassays, especially RIA, have been primarily used to measure serum 25(OH)D while liquid chromatography-MS (LC-MS) is considered the 'gold standard'. There is significant disparity among the immunoassays, and all immunoassays have considerable bias compared with LC-MS methods. Because of the variations among the results from these different assays, it is necessary that assay-specific reference ranges be established or standardisation of the assays take place. The present review focuses on ecological, case-control, and cohort studies that investigated the role of vitamin D in health and disease. In addition, analytical techniques used in laboratory evaluation of vitamin D nutritional status are also critically reviewed. The majority of the literature included in the present review is selected from that searchable in PubMed up to the end of September 2008.

PMID: 19860998

[Lufega]

This is one example of the many causes:

[Effect of the Epstein-Barr virus on the nervous system]

[Article in Ukrainian]

Kononenko VV.

On the basis of a comprehensive examination of 12 patients with verified Epstein-Barr virus (EBV) infection it has been shown that this infection can be accompanied by acute and chronic affections of the central and peripheral nervous system. The pathogenesis of chronic EBV-infection involves autoimmune disorders, neurosensitization, a hazard of an injury to the muscular tissue. Chronic EBV-infection calls for differential diagnosis with other slow virus infections, systemic tumor afflictions, systemic diseases of the connective tissue. Acyclovir or valacyclovir can be recommended as treatment of acute and chronic EBV-infection.

Long term acyclovir seems promising to treat EBV.

Long-term administration of valacyclovir reduces the number of Epstein-Barr virus (EBV)-infected B cells but not the number of EBV DNA copies per B cell in healthy volunteers.

Hoshino Y, Katano H, Zou P, Hohman P, Marques A, Tyring SK, Follmann D, Cohen JI.

Medical Virology Section, Laboratory of Clinical Infectious Diseases, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Maryland 20892, USA.

Epstein-Barr virus (EBV) establishes a latent infection in B cells in the blood, and the latent EBV load in healthy individuals is generally stable over time, maintaining a "set point." It is unknown if the EBV load changes after long-term antiviral therapy in healthy individuals. We treated volunteers with either valacyclovir (valaciclovir) or no antiviral therapy for 1 year and measured the amount of EBV DNA in B cells every 3 months with a novel, highly sensitive assay. The number of EBV-infected B cells decreased in subjects receiving valacyclovir (half-life of 11 months; P = 0.02) but not in controls (half-life of 31 years; P = 0.86). The difference in the slopes of the lines for the number of EBV-infected B cells over time for the valacyclovir group versus the control group approached significance (P = 0.054). In contrast, the number of EBV DNA copies per B cell remained unchanged in both groups (P = 0.62 and P = 0.92 for the control and valacyclovir groups, respectively). Valacyclovir reduces the frequency of EBV-infected B cells when administered over a long period and, in theory, might allow eradication of EBV from the body if reinfection does not occur.

[youandme]

Hi cwhite

Im also a guy in Australia with Autoimmunity!...Ive got lots of it !

First up..Ive got lots of experience with this..the last four years Ive slowly developed more and more Autoimmune diseases

There are basically 2 camps of thought about these conditions.

1, Its some kind of bug in your body that is either still there in some form
..hence the talk of trying antibiotics to clear it

2 or you had a bug that switched on some genetic mutations that has confused the immune system.

I believe there is a strong genetic predisposition in my case (family background of autoimmunity)..I had chicken pox and camplyobacter bugs close together..I nearly died at the time..basically the combo helped screw up my immune system.

It appears to me after talking to many men..that Autoimmune disease in men can be more severe more often.

Plaquenil is cheap...usually causes few side effects...it caused me to have severe tinnitus and headaches..but most tolerate it well..I personally know of several with Lupus able to lead a quite normal life on it....so it can work and well.


So Plaq is perhaps a good option...as is antibiotic therapy..to see if it helps..perhaps first !.

The other conventional options:
IVIG
Plasmapherisis
Steroids
Biologicals as you know

The most way out there is a Stem Cell Transplant..or Immune System Reboot.
Using your own Stem Cells you wipe out your immune system with chemo and grow a new one...its a last resort therapy..and not readily available in Australia AFAIK
..and no guarantee of success..as well as risk of infection and death.

Non - conventional
Go to Costa Rica or Panama and be infused with stem cells harvested from your own fat tissue...they harvest T-Regulatory making mesechymal stem cells from the fat and expand them..injected back in..the hope to regulate your immune system
Helminths - Ingesting or via skin, worm therapy, (worms give out regulating signals to the immune system)
Low Dose Naltrexone (Im using this 'again' at the moment)..a good analgesic..not sure what it is really doing to the immune system...increases endorphin production.

If you want to converse, PM me

Edited by youandme, 10 November 2009 - 12:44 PM.

[cwhite]

Thanks for the info guys! its been very helpful. I'm still debating if I should start Plaquenil, since my current symptoms are very mild (cold fingers basically, very slight muscle aches), all inflammation markers in my blood are in normal range. After some research I've decided to supplement

IC3
Glucosamine
Vitamin D3
Methylfolate
B12
Vitamin C
Krill Oil (lots)

and change my died towards CR, high in raw vegetables, low carb, and minimal animal protein.

[niner]

Helminths - Ingesting or via skin, worm therapy, (worms give out regulating signals to the immune system)

This has shown shockingly good results for Crohn's disease/IBD. The story is that we co-evolved with helminths, and need the little guys for our immune system to keep calm. I didn't realize that they were being used in other autoimmune conditions, but it makes some sense. You can buy special teeny tiny little worms that are bred for this purpose. I think they are so small that you don't even really see them, so you can drink them down without being grossed out. Anyway, there are people who do this. The worms are not cheap, but they cost less than some other treatment options.

[lynx]

TNF-alpha is the major culprit in autoimmune diseases.

Curcumin and green tea are natural TNF-alpha inhibitors.

On the unnatural side Wellbutrin is a great TNF-alpha inhibitor.

Anti-TNF-alpha antibody therapies in autoimmune diseases.

Chatzantoni K, Mouzaki A.

Division of Hematology, Department of Internal Medicine, Medical School, University of Patras, Patras, Greece.

Autoimmune diseases affect about 3% of the world population, more frequently women than men, and their incidence is attributed to an immune response of a genetically predisposed individual to an environmental pathogen, under the influence of inadequate immuno-regulatory mechanisms. Advances in understanding the cellular activity pathways and cytokine expression profiles have led to new therapeutic regiments, like soluble receptors, monoclonal antibodies and molecular mimetics that have been employed to enhance or replace conventional immunosuppressive therapies. Among new biologicals that have been developed to target defined pathways of the adaptive immune response are TNF-alpha inhibitors. TNF-alpha is a proinflammatory cytokine elevated in many autoimmune lesions, and its deregulation characterizes many autoimmune diseases. TNF-alpha seems to exhibit an immunoregulatory role that can alter the balance of T regulatory cells and orchestrate acute immunological responses. More than half a million autoimmune patients have received therapy with anti-TNF-alpha antibodies, usually because they were refractory to conventional treatments. This review offers an update on TNF-alpha-targeted therapies used in patients suffering from various autoimmune diseases, based on the current knowledge of disease pathogenesis, with emphasis on the efficacy and safety that clinical trials have shown until now.

[youandme]

http://www.lukecology.blogspot.com/
The FDA has stopped the worm therapy in the US
Apparently they class helminths as Drugs.

LOL...I just ate a yogurt...next thing to get banned ?

Helminths - Ingesting or via skin, worm therapy, (worms give out regulating signals to the immune system)

This has shown shockingly good results for Crohn's disease/IBD. The story is that we co-evolved with helminths, and need the little guys for our immune system to keep calm. I didn't realize that they were being used in other autoimmune conditions, but it makes some sense. You can buy special teeny tiny little worms that are bred for this purpose. I think they are so small that you don't even really see them, so you can drink them down without being grossed out. Anyway, there are people who do this. The worms are not cheap, but they cost less than some other treatment options.

[silverneedle]

I recently tried piracetam and found that it increased blood supply to cold feet. Looking it up on the net revealed that piracetam is an effective treatment for reynauds phenomenon. So far it has taken less than 800mg for me to get quite a quick response of warmth coarsing through my feet. Ive been swallowing some Magnesium Chloride at night for a month before trying (and during)piracetam so perhaps they have a synergistic effect.
Piracetam is very non toxic and cheap so hopefully worth a try at the very least. Please let me know if you do try it and if it has an effect for you. Heres an extract...

"The particular efficacy of 8 g piracetam daily in 3 divided doses at 8-hourly intervals can be attributed to its unique dual mode of action; inhibition of platelet function by inhibition of thromboxane A2 synthetase or antagonism of thromboxane A2 and increased formation of prostaglandin I2, together with a rheological effect involving reduction in blood and plasma viscosity through an increase in cell membrane deformability and a reduction of 30-40% in the plasma concentrations of fibrinogen and von Willebrand's factor. In addition, the administration of piracetam appears to be devoided of adverse effect."

Due to this result with piracetam im also interested to try out Nattokinase which can unblock blood vessels. Heres a different auto immune disease that is being cured by unblocking blood vesssels
http://www.gizmag.co...-zamboni/13447/

I have had 15 years of connective tissue issues and am very hopeful that i have stummbled on to something here. any feedback welcome.

Edited by silverneedle, 04 December 2009 - 11:34 PM.

[cwhite]

Thanks for the info, I will try out some piracetam, since mild raynauld's is the only thing that bothers me.

Just an update, I have been taking daily 6 tabs of krill oil, 10000 UI vitamin D, Magnesium, pycnogenol, lots of probiotics(DR Ohhira, Culturelle),Vitamin C and green tea extract. I completely removed grains, legumes, sugar, soy, and dairy from my diet for the last 3-4 weeks and eat a lot of green vegetables, some sweet potatoes, lost of berries, organic lean chicken and occasionally grass fed beef. My main oil is olive oil and butter.

My muscle aches are gone now. I feel completely healthy apart from very mild raynauld's when I get cold. Hopefully this new diet and supplements will keep me stable and I can avoid taking any medication. I will get a blood test done in 2 months to see if anything has changed.

[wiserd]

cwhite - Regarding the stuff you read on Trevor Marshall's ideas on 'vitamin' D3. While 90% of the stuff they put out is garbage (models re:olmersartan effectiveness not available for public reference, assertions not peer reviewed, etc.) the argument that low levels of 25D3 may be due to infection/inflammation rather than deficiency may be valid in some cases. How's your CRP?

It makes little sense that low 25D3 would cause arterial calicfication or increased heart disease. It makes a LOT of sense that chronic infection would increase blood -calcium levels via the following;
TLR-4 -> CYP271B -> increased conversion of 25D ->1,25D

(basically 25D may be low in some people because it's used and destroyed rather than because of an insufficient supply.)

1,25D (calitriol) activates the vitamin D receptor putting calcium into the blood. (K1 or K2, aka menaquinone, puts it into the bone.)
D3 supplementation minus vitamin K (such as if it's suppressed via warfarin) leads to increased arterial calcification.

In any case, it's better to get D3 from sunlight, since you also break down bilirubin that way.

[niner]

In any case, it's better to get D3 from sunlight, since you also break down bilirubin that way.

If you have jaundice or are a neonate, it might be helpful to get a little sun, but there are a lot of other ways that bilirubin is cleared in older children and adults. Supplemental D3 is a fine way to get D, and we know that sun has negative effects on skin. (wrinkles, keratoses, cancer) I would limit sun to what you get from recreation, (and use protection even then) but don't expose yourself just to make D.

[cwhite]

cwhite - Regarding the stuff you read on Trevor Marshall's ideas on 'vitamin' D3. While 90% of the stuff they put out is garbage (models re:olmersartan effectiveness not available for public reference, assertions not peer reviewed, etc.) the argument that low levels of 25D3 may be due to infection/inflammation rather than deficiency may be valid in some cases. How's your CRP?

It makes little sense that low 25D3 would cause arterial calicfication or increased heart disease. It makes a LOT of sense that chronic infection would increase blood -calcium levels via the following;
TLR-4 -> CYP271B -> increased conversion of 25D ->1,25D

(basically 25D may be low in some people because it's used and destroyed rather than because of an insufficient supply.)

1,25D (calitriol) activates the vitamin D receptor putting calcium into the blood. (K1 or K2, aka menaquinone, puts it into the bone.)
D3 supplementation minus vitamin K (such as if it's suppressed via warfarin) leads to increased arterial calcification.

In any case, it's better to get D3 from sunlight, since you also break down bilirubin that way.

The last blood test showed CRP at normal, not even high normal. ESR and other inflammation markers are all normal. My Vitamin D3 level were at around 32, I'm assuming it would be wise for me to get my levels to 60-70, thus the 10,000 UI dosage. One main reason I want my vitamin d3 high is because I do not yet meet the full criteria to be diagnosed with MCTD but rather Undefined connective tissue disease.

Vitamin D deficiency in undifferentiated connective tissue disease.

Zold E, Szodoray P, Gaal J, Kappelmayer J, Csathy L, Gyimesi E, Zeher M, Szegedi G, Bodolay E.

Division of Clinical Immunology, 3rd Department of Medicine, Medical and Health Science Center, University of Debrecen, Moricz Zs, Str, 22, Debrecen, 4032, Hungary. zold_eva@yahoo.com

NTRODUCTION: Both experimental and clinical data provide evidence that vitamin D is one of those important environmental factors that can increase the prevalence of certain autoimmune diseases such as systemic lupus erythematosus, rheumatoid arthritis, insulin-dependent diabetes mellitus, and inflammatory bowel disease. The aim of the present study was to investigate the prevalence of vitamin D insufficiency in patients with undifferentiated connective tissue disease (UCTD). METHODS: Plasma 25(OH)D3 levels in 161 UCTD patients were measured in both summer and winter periods. Autoantibody profiles (antinuclear antibody, anti-U1-ribonucleoprotein, anti-SSA, anti-SSB, anti-Jo1, anti-Scl70, anti-double-stranded DNA, anti-centromere, anti-cardiolipin, rheumatoid factor, and anti-cyclic citrullinated peptide) and clinical symptoms of the patients were assessed. RESULTS: Plasma levels of 25(OH)D3 in UCTD patients were significantly lower compared with controls in both summer and winter periods (UCTD summer: 33 +/- 13.4 ng/mL versus control: 39.9 +/- 11.7 ng/mL, P = 0.01; UCTD winter: 27.8 +/- 12.48 ng/mL versus control: 37.8 +/- 12.3 ng/mL, P = 0.0001). The presence of dermatological symptoms (photosensitivity, erythema, and chronic discoid rash) and pleuritis was associated with low levels of vitamin D. During the average follow-up period of 2.3 years, 35 out of 161 patients (21.7%) with UCTD further developed into well-established connective tissue disease (CTD). Patients who progressed into CTDs had lower vitamin D levels than those who remained in the UCTD stage (vitamin D levels: CTD: 14.7 +/- 6.45 ng/mL versus UCTD: 33.0 +/- 13.4 ng/mL, P = 0.0001). CONCLUSIONS: In patients with UCTD, a seasonal variance in levels of 25(OH)D3 was identified and showed that these levels were significantly lower than in controls during the corresponding seasons. Our results suggest that vitamin D deficiency in UCTD patients may play a role in the subsequent progression into well-defined CTDs.

I will be testing again in 2 months and this time I will test for both 1,25 D and 25 D. I also take k2 Mk7 but will be switching to Mk4 soon.

Sun wise, it's not a good idea for me to get any sun exposure, as I feel it could cause a flare and I usually feel very tired after exposure. MCTD is closely linked to lupus or at least can feature some SLE symptoms, and sun exposure is bad for SLE individuals. So I avoid the sun and take supps.

I'm also looking into getting my Butyrate levels up (lots of veggies + probiotics), also looking into Glyconutrients since they can raise Butyrate levels, if anyone has any experience with that let me know.
Epicor also seems interesting to look into.

Edited by cwhite, 10 December 2009 - 06:18 AM.

[youandme]

cwhite

Good to hear you fighting this thing.

Im very impressed with your efforts well done !

butyrate...Im assuming you want to increase this due to the regulatory link to the immune system via HDAC inhibition...see link... ?! is that right:

http://www.fasebj.or...0-0359fjev1.pdf

http://www.mombu.com...gy-3795593.html

I tried contacting the author to see how he is going but Ive been unable.


You can supplement sodium butyrate...

http://www.bodybio.c...product362.aspx


I cant speak for Glyconutrients.

Try and get blood tests perhaps 1 per month..so you can try n track what helps what does not.

[youandme]

On another note

Sodium Butyrate shown to increase lifespan !

http://www.plosbiolo...al.pbio.1000245

[youandme]

Epicor

found this thread

http://www.imminst.o...o...=17713&st=0

[cwhite]

Youandme,

Thanks, doing my best

Yes, Stephan from Whole Health Source had a blog about bytyric acid here http://wholehealthso...troller-of.html and that got me looking around the web, and I found those same links you mentioned.

The following link talks about glyconutrients and has some very interesting info, most likely worth trying, but at least it looks like increasing byturate levels is a good idea.

http://www.thenakeds...c=1372.msg29876

Butyrate, one of the short-chain fatty acids, has many beneficial properties, and its production is increased with these substances. The research that is important here is several studies that show that butyrate increases the production of a protein called GALECTIN-1. (3,4)

3. Gaudier E, Forestier L, Gouyer V, Huet G, Julien R, Hoebler C. Butyrate regulation of glycosylation-related gene expression: evidence for galectin-1 upregulation in human intestinal epithelial goblet cells. Biochem Biophys Res Commun. 2004 Dec 17;325(3):1044-51.
4. Gillenwater A, Xu XC, Estrov Y, Sacks PG, Lotan D, Lotan R. Modulation of galectin-1 content in human head and neck squamous carcinoma cells by sodium butyrate. Int J Cancer. 1998 Jan 19;75(2):217-24.

REGULATION OF IMMUNE HOMEOSTASIS:ROLE OF SECRETED AND INTRACELLULAR GALECTIN-1

“…Although galectin-1 is widely expressed in a large number of tissues and fulfills pleiotropic extracellular functions, it specifically acts on the immune response by preventing autoimmune and inflammatory processes….”

http://www.szbk.hu/m...o...le&artid=25


Regulation of Immune Responses by Galectins

…Possibly because of galectin-1's apoptotic nature, the introduction of galectin-1 in various autoimmune model systems results in the amelioration of clinical symptoms…

http://www.gak.co.jp...03/IS-A03E.html

Nice thread about Epicor, there is one women who has used it to keep lupus stable, but her story seems a little marketing based.

http://www.vrp.com/a...art1962&zTYPE=2

[kakker]

cwhite,

Good luck to you. I hope you continue to improve. Take care.

Edited by kakker, 13 December 2009 - 10:05 PM.

[youandme]

cwhite

Yeah I read that article where the lady extols the virtues of Epicor...and I agree it sounds like or should I say smells like Marketing.

Ambrotose (Glyconutrients) are very expensive (ongoing costs) ...I think there are iherb equivalents.

Thanks for the butyrate link, Im reading up on it now.

Foods that help with the production of butyrate...broccoli/sprouts/florets...garlic..banana....any more anybody ?

Edited by youandme, 14 December 2009 - 05:44 AM.