List of recommended Viral/Bacterial Tests.

[Cloud]

Curry.....that's a nice looking list you have there.

I'd just like to add.....I know that Hep C is listed everywhere as an exclusionary diagnosis for ME/CFS, but the truth is, generally it's nothing like it symptomatically. The only people who really think the 2 diseases have similar symptoms are those who still think our disease is all about fatigue. Most people with Hep C, have nothing but fatigue....it can be profound fatigue, but still it's nothing like what we experience with ME/CFS. Regardless, the Hep C test is cheap and a good idea to have done.

Hydroxycobalamin (B12) is one of the best things I have ever taken for decreasing symptoms. I take 2000mcg IM or SQ 3-5 times a week. Expensive, but worth it. True one can't get toxic on B12 itself, but I would stay away from taking too much of the Cyanocobalamin form. Lots of discussion around here on B12.

 

[heapsreal]

i SECOND THAT HYDROXY WOULD BE A BETTER OPTION. i WOULD BE INTERESTED TO SEE HOW U GO ON B12 INJECTIONS AS THIS MAY BE YOUR CURE, IF NOT U WILL FEEL BETTER WITH MORE B12, GOOD DOSES OF B12, B6 AND FOLIC ACID REDUCE RISK OF HEART DISEASE BY REDUCING CERTAIN INFLAMMATORY MARKERS OF HEART DISEASE, SO ITS GOOD ALLROUND.

CHEERS!!!

 

[*GG*]

No offense meant RLC, but could you break up your writings a little bit more? I find it hard to read those huge paragraphs! Thanks!!

 

[August59]

If you can get a prescription, I would have them write it for hydroxy 3,000 iu/ml and have it filled at a compounding pharmacy.

I tried different dosages, different frequencies, different needles and even different subQ locations on the body. My preferred shot was .3ml (syringe max.) once per day in thigh or butt (still subQ). I'm sure a larger dose would have been used initially, but by the time I figured this out I was 3 - 4 weeks into therapy.

I used the small short needle based on a link to an article on a forum here where this needle delivered the B12 into a different layer of the dermis (?) and allowed for a slower more even distribution that would more closely mimic natural distribution.

I had very little response to abdominal shots and I tried different syringes and different doses. That said, I'm a 51 yo male with a very good handful (but no more) of fat in the abdomen area. I think this dense fat is not condusive for B12 absorbtion (just a guess).

Others on the forum might have recommendations as to where to get hydroxy and possibly higher concentrations. Some may recommend methyl B12, but I would make sure it is a very reputable source as there have been some problems with the makeup of methyl. Methyl B12 shots may come on to strong for your system as well, just be cautious if you go this way (check with richvank or fredd on this).

JR

 

[rlc]

No offense meant RLC, but could you break up your writings a little bit more? I find it hard to read those huge paragraphs! Thanks!!

sorry ggingues message recieved will do my best

 

[curry]

Hi Curry, i really sympathise with your position as i also live in the UK. Like you i ave had private testing (mitochondrial function test) which my doctor has completely ignored. i have requested he prescribe the supplements that Dr.Myhill advised were prescribable, but my GP reuses to prescribe them.
I think that it is hard for people form other countries to understand how difficult it is here in the UK. The NICE guidelines actually prohibit our GPs form doing any testing that would show up viruses etc. Also not allowed to be tested or treated for symptoms related to things lke POTS.

I would also really like tofind out where or who to get further testing for viruses,infections and parasites with in the UK or Europe. So if anyone has any info on this....

I've been researching into this for the last days, emailing various labs and GPs to find out where to get testing, and comparing prices for their services. When I know more I will post my findings.

Regarding the B12 - I have tried sublingual methylb and hydroxyb, and also injections (though not methylb, as I couldn't find a reliable source) from several brands over a course of 12 months, and my fatigue hasn't improved.
For this reason I'm investigating further...