Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Dreambirdie, Sep 23, 2009.
See my post on other thread.
Klutzo. Hair falling out.
Are you taking a lot of selenium? Even in a multi mineral or anything?
My hair started falling out recently.. no danger of going bald or anything..but enough for me to notice.
I suspect it is down to all the selenium I was taking. I was kind of freehanding my liquid selenium...and hair loss is a sign of selenium overdosing.
I ran a urine toxic metals and essential elements screen to double check.. waiting on the results. I'll let you know when they come in.
Also, Klutzo, I had healthy levels of B12 and folate according to conventional blood tests.
Then I ran the Vitamin Diagnostics panel and later an MMA. All the folate markers were low .. out of range. The MMA was 17.
Clear-cut case of B12 and active folate deficiency. Completely missed by conventional testing.
I believe I posted the numbers in another post. Check my other posts for more info.
Glad you and Fredd patched things up. I would hate to see you miss out on a potentially beneficial therapy because of some careless or ill considered words.
My multivitamin, which I've been taking for over ten years, has 200 mcgs of selenium, but I can only afford to take 1/3 dose daily, so I am getting about 67 mcgs. I don't eat Brazil nuts and only use a little garlic in cooking once in awhile, so I'm not getting much in my diet. The soil where I live is low in selenium.
I once did the Zhang Protocol for my Lyme Disease for six months, which is loaded with garlic to the point where my husband would not come near me, and my hair did not fall out during that time.
I am glad you figured out what caused your problem and I hope it has stopped.
Freddd, if you are reading this, I did get a chance to examine a hair that fell out tonight under a magnifying glass. It was full length with a little knot-like white thing on one end, which I assume is the root.
One of my favorite dishes is baked galic on some toasted multigrain bread. Of course if one is going to be social it's a dish best eaten with those around you with whom one is social.
I 'll keep my eyes open on the hair.
Although the answer to my question may be answered....somewhere......I would be very interested to hear if anyone in the UK had tried Rich's protocol and with what results.
Is it possible to obtain the above named products from a UK company? Anyone know, please?
I've done Rich's protocol for nearly two years, though have recently substituted methylcobalamin for hydoxy (the activated B guard). I've not improved, I'm afraid, in fact am currently in my worse relapse ever which has lasted 6 months so far (unlikely to be due to this protocol though).
I got the Folapro and Actifolate from www.nutricentre.com, the B12 Guard from naturalnutrionals.com (couldn't find it in UK), and the phos serine from iherb (much cheaper than in UK). It seems the only place to get the General Vitamin is Holistic Health - it's very expensive and postage to UK was over 20. I think Sarah Myhill may suggest an alternative.
Some people seem to be helped - it's probably worth trying.
Thanks for your reply Jenny.
I'm sorry to hear that it hasn't helped you and that you're also in your worst relapse ever. Been there, done that....over and over..and will no doubt do that again. It is horrid and I send you a big. I really hope your health will improve soon.
Just maybe my sudden enthusiasm to try yet one more approach to attack this lurgy wasn't such a bright idea.
Thanks for reporting on the lack of results that you have experienced from the Simplified Treatment Approach (I'm serious!).
I'm very sorry that your health hasn't improved on this treatment. Here are some possible reasons why:
1. Perhaps you don't have a partial block in your methylation cycle. I think this is possible, but if you have the symptoms of ME (CFS), I think it's unlikely, based on the testing that has been done so far. Testing is available to determine this, either directly, using the methylation pathways panel from Vitamin Diagnostics in the U.S. or the European Laboratory of Nutrients in the Netherlands, or indirectly, using a urine organic acids test that includes both methylmalonic acid and formiminoglutamic acid, such as the Genova Diagnostics Metabolic Analysis Profile.
2. Perhaps your body is low in one or more of the vitamin or mineral cofactors for the methylation cycle and related pathways. These include the B-complex vitamins, zinc, magnesium, manganese, copper and selenium. One possible cause of deficiencies in some of these cofactors is kryptopyrroluria, which Dr. Klinghardt has reported finding in a large fraction of his patients. Testing is available to check for these deficiencies, and supplementation of deficient cofactors should help if some are low.
3. Perhaps your body is low in the amino acids needed to feed this part of the metabolism, especially methionine, serine, glutamine, cysteine and glycine. This one appears to be a fairly common problem in ME (CFS). I think there are two reasons. The first is tha the digestive system in many cases is not working well for a variety of reasons, one being the partial methylation block and glutathione depletion themselves (sort of a vicious circle), so that the digestion of protein and absorption of amino acids from the gut are below normal. The second reason is that because of the partial block in the Krebs cycle that results from glutathione depletion, carbohydrates and fats are not used for fuel as well as normal, so that the cells burn more amino acids for fuel. Thus, the amino acids levels in the body decrease. Perhaps taking a combination of free-form amino acids will help with this. In extreme cases, in which the gut is just not able to absorb amino acids, intravenous treatment with amino acids may be necessary. Some PWCs have had this treatment, to advantage.
4. Perhaps the levels of toxic heavy metals (such as mercury) are high in your body. These metals are known to be able to block some of the enzymes in the methylation cycle and related pathways. In such cases, it may be necessary to take measures to lower the body burdens of the toxic heavy metals before it will be possible to normalize the methylation cycle operation. I think that some of the newer agents, such as OSR#1 and MicroSilica might be possibilities for helping with this, based on reports from Dr. Klinghardt.
Those are the possibilites as far as I know now, based on study of some of the cases in which there was no response to this treatment. It appears that over two-thirds do respond, but you are certainly not alone in not experiencing a response, and I am very interested to find out the causes of non-response. If you can shed any light on whether any of the above apply to your case, I would appreciate it.
Thanks very much for these suggestions Rich. I'm too ill to think about the practicalities of organising blood tests from the UK at the moment, but plan to look into these when I'm a bit better again.
Please note - I've reported on my lack of results before, on this forum and on others. So take care not to count me as several different Jennys, all of whom don't seem to be benefiting! :worried:
Mandimart.co.uk carries most of the yasko stuff and postage is free with purchases over 35 quid.
I've been doing yasko/simplified for 3 years..and I'd say I'm about 30 percent improved. I think it's key to my recovery but not sufficient in and of itself.
My plan was to get methylation up and running before tackling anti virals...since you need methylation to suppress viral DNA.
Rich may be able to comment on this ...but my sense is a lot of folks wind up on antivirals forever ..or years and years.. because their own immune systems cannot keep viruses in latency. I note that someone reported on here recently that Nancy Klimas said she was concerned about patients getting resistant to the drugs.
My Natural Killer Cell activity has certainly improved on this protocol, but I'm not sure I understand the correlation between improving methylation and T-cell, B-cell, NK cell activity.
I've seen global improvements with this protocol. Better sleep almost immediately. Body temp came up. Periods normalised. Less fatigue. And eventually and I do mean eventually......better.cognitive function.
Problem is it's been really slow..Plus, I do think you need some elements of the full yasko program that aren't in the simplified program. I think you need to track minerals, and you need binders and maybe chelators to grab and mop up all the toxins and metals.
and then there's the casein-free, gluten-free diet to heal the gut and protect against excitotoxicity.
There are just so many moving parts to this protocol.. but if you read this forum, you realise that it really does seem to be that complicated.. You gotta fix the gut, fix the immune system, heal the brain, get the toxins, metals out and attack the viruses and other pathogens.
It's not simple.
Well, anyway, that's my 2 cents.
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