Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).


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Old 06-27-2009, 11:53 PM #11
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Originally Posted by Megan View Post
Hi MetalMX,

Just wondering how you got your sample to Genova Diagnostics from Aus? Time lines for transit and couriers etc?

Well with the Optimal Nutritional Evaluation it took about 2 months their and back but thats because its a complicated test.

Their is a Genova Diagnostics here in Melbourne, Australia so i sent my sample to them and they send it off to the U.S.
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Old 06-28-2009, 12:04 AM #12
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This is certainly helpful. I posted elsewhere that I had noticed some surprising benefits in inflammation and some additional benefits with fatigue (although the fatigue has not completely gone away) by using antioxidant supplements.

What I have mainly used has been*edit*cocktail of different substances that promote reduced intracellular glutathione synthesis and recycling.
1) N-Acetyl-Cysteine (NAC): to increase the limiting substrate cystine in GSH.
2) Vitamin C: to absorb NAC
3) L-Glutamine: also one of the reagents in the GSH tri-peptide, but I think this also helps recycle GSH.
4) Alpha Lipoic Acid: to help the liver function, since there is a large concentration of GSH in the liver.

There are a few other substances in this mixture, but it really seemed to make a difference with me. *edit*

I still need to look at getting better sleep. I seem to do best with 8 hrs, but I am currently getting 6.5-7 hrs durring the week. Some days I have to go home and lie down at lunch just to make it through the other half of the day.

I also need to read about methylation. How are methylation problems resolved? Isn't methylation part of the body's own developmental regulation? If one removes methylation, could one inadvertantly express oncogenes? Can one demethylate with specificity? These are all questions that I need to understand better.

The idea of controlling methylation seems attractive to me. I wonder if we can do it safely.



We can control methylation safely if we are supplementing with the correct nutrients for our own biochemistry. One mains poison is another mans medicine in methylation. Thats why the ONE test from genova reveals these errors. But again you need someone who understands how to interpret this test for you, as methylation is just starting to get recognised by the medical communities.

All in all it is an excellent test to tell you what nutrients you need to be supplementing, probably the best in the world, since it looks at your biochemistry.

50% of people are undermethylated while 10-15% are overmethylators and the lucky rest being in the normal.

Improper methylation leads to diabetes, cancer, MS, autistic like features, and peripheral nerve damage. It means the DNA information in your cells are is being mis replicated. But it can be corrected by supplying proper nutrients in the proper form to over ride the conversion process. 50% of people are undermethylated and have no clue what is really happening, but it really depends on if there is a genetic mutation with in their cells if it leads to other disaease such as cancer, MS and diabetes.

As you mentioned those supplements help to increase glutathione which is the body's master antioxidant and of critical importance in the body's detoxification.

When you get methylation working with the right supplements then your body starts to produce enough glutathione.

Good Methylation allows the body to generate enough energy, have a good mood (production of neurotransmitters), starts the healing process, allows correct replication of DNA, healthy immunity, Production of keratin (for hair, skin and nails) and proper detoxification (heavy metals etc.) of the body through the production of glutathione.
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Old 06-28-2009, 12:20 AM #13
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The reason they tell people with CFS to take antioxidants daily is because people with CFS are flooded with oxidants and your antioxidant reserves are depleted either from undermethylation, infection or from excess NO2 (Nitric Oxide).

When you start the methylation process that infection that is lingering in your body and unable to get out will start to be removed, you might get detox reactions and start feeling worse than you do but in time you will get better and back to normal.

The HPA axis (Hypothalamic-Pituitary-Adrenal) Is another trigger in CFS. Since in some people due to extreme daily stress their body's internal biochemistry has just cracked or broken if you will. Even bioloigcal stress such as malnutrition/undernourishment of nutrients and low thyroid hormones etc will cause this.


What can be done is:

1. Complete hormone testing (genova has a female and male hormone profile) - getting hormones into range will be key

2. Nutritional evaluation - through ONE test at genova, a hair mineral analysis is also useful to detect any heavy metal overload.

3. Saliva Cortisol profile + DHEA's 4x throughout the day. So this is a saliva tube you spit into at four different times during the day. 6am, 12pm, 6pm, 10pm. This shows you where your cortisol levels are either high or low. Most people with CFS have low cortisol particularly in the morning and feel like zombies in the morning since you need enough cortisol in the morning to get going. If you do show low cortisol you can start on something like Isocort to increase cortisol levels. If on the other hand you have high cortisol a supplement such as Phospholydlserine can be used to reduce levels.

4. Avoiding wheat, dairy and soy if you're not already doing so, which tend to be common hidden allergens in many people.

5. GI Effects Stool Profile from Metametrix this has DNA analysis also, this is the worlds best stool testing. This test is excellent at evaluation gastrointestinal function. You need to be able to absorb your food to create energy you need everyday thats why most people with CFS have a problem with their digestion. This test evaluates - parasites, worms, yeasts, digestion, absorbtion, beneficial bacteria and coeliac disease/gluten intolerance.
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Old 06-29-2009, 01:17 AM #14
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Where do Folinic Acid and Acetyl-L-Carnitine fit in the Methylation process, as I have had quite dramatic effect from both of these?

The only other thing I have had a dramatic response from (late in 2007), is Shark Liver Oil (deep sea New Zealand) which helped lift my debilitating fatigue.

I have also been taking Methylcobalamin (sublingually) for over twelve months now and although my B12 level has risen, I haven't felt any appreciable difference by taking it. Nor have I felt any real obvious change with CoQ10. That's not to say that significant things are not happening at the cellular level!

Any thoughts!

Megan
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Old 07-02-2009, 10:02 AM #15
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Where do Folinic Acid and Acetyl-L-Carnitine fit in the Methylation process, as I have had quite dramatic effect from both of these?

The only other thing I have had a dramatic response from (late in 2007), is Shark Liver Oil (deep sea New Zealand) which helped lift my debilitating fatigue.

I have also been taking Methylcobalamin (sublingually) for over twelve months now and although my B12 level has risen, I haven't felt any appreciable difference by taking it. Nor have I felt any real obvious change with CoQ10. That's not to say that significant things are not happening at the cellular level!

Any thoughts!

Megan

Folinic Acid is a methyl donor. ALCAR isn't a methyl donor itself but through methylation the body produces its own carnitine.

Different people will have different responses to different supplements depending on what they need, the only way to know what you really need is to do the appropriate testing (ONE test). Then you're methylation protocol of supplements needs to be used for 3 to 6 months before the true benefits are realised and you have your health back. This is what i mean you cannot be jumping from one supplement to another and expecting results you also cannot expect permanent results from using something for 2 to 4 weeks even it needs to be long term.

I it no doubt you yourself are undermethylated Megan it just depends what supplements you need. How long have you been using the folinic acid and at what dosage? For methylation dosages are roughly 5mg per day. MethylB12 dosages are 10mg per day.

SAMe is also another very important supplement if not one of the most important but while using it you must be using adequate (B6, B12, Folate) because if not your homocysteine will likely rise.

SAMe is important for normal liver function/detoxification, osteoarthritis, hormones, neurotransmitters, formation of DNA/RNA, depression, creatine, and many many enzymatic reactions in the body.

I am just about to add SAMe to my protocol at 200mg a day.
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Old 09-04-2009, 02:07 PM #16
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My blood levels of B12 were 241 (200 - 800)
Doctors told me its all normal
As you seem to have discovered, this doctor was wrong.

I had many of the same symptoms as you, MetalMx, due to a B12 deficiency. My B12 level was 294 (150-1100), but thankfully, the doctor who finally discovered it realized that was a suboptimal B12 level, particularly in someone with neurological problems. The problem is it took 5 years, eight other specialists, and a dozen visits to my primary care doctor before I found Dr. Right. Some labs have been starting to footnote that anything under 400, particularly when accompanied by neurological symptoms, warrants further investagation. B12 deficiency is under-diagnosed and under-appreciated for the serious neurological problems that can occur.

I've been taking methylcobalamin daily for nine years now. Many of my symptoms were gone within months, but some improved slowly over time. Some of the cognitive problems are still with me, but to a much lesser degree. I'd say I improved 95-98%. How long have you been taking the B12? I posted about my symptoms on your thread in the MS forum.

Cara
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Old 10-06-2009, 03:16 PM #17
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HI -

I am writing to ask how the high levels of N.O . are ascertained? My daughter took a N.O. supplement and has been in hospital since with kidney problems and chronic fatigue - fibromyalgia and God knows what else...

Kate
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Old 10-06-2009, 03:19 PM #18
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Kate here again please email me at
**
as I prob may not get to see your reply here!!!!!!!!!!!!!!!!!!!!!!!
I sincerely hope that YOU yourself are much bettter
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Old 10-06-2009, 03:47 PM #19
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I'd like to know what supplement could raise NO so much?

Please PM me with the name of this supplement and how much she took.
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