Are any of the following drugs used (or have they been used) to help treat ME.

[AndrewB]

Acivir 400 (Acyclovir)

Lamivudine

Alfakim

Terbinafine

I was just wondering if anyone on here has ever been given any of these medication to either ease the ME symptoms, or to try and battle the condition.
Ive read a lot about 'long-term' use of antibiotics too, which ones are used in long term treatments.
My GP says antibiotics are only useful in short term bursts as they become ineffective long term, so if anyone can update me on the science behind long term
treatment i might have something to ask him about.

 

[floydguy]

I am currently on Valtrex which I think might be similar to Acyclovir. It's been the ONLY helpful med for me - cognitive and I just "feel" better. We'll see if it lasts.

 

[heapsreal]

valtrex is converted to acyclovir in the body and achieves higher blood levels of acyclovir then taking acyclovir itself by the way its metabolized, so although valtrex maybe more expensive, i think it works out cheaper though when trying to get the drug to a certain blood level.

 

[ukxmrv]

Acyclovir is being used by UK patients who can demonstrate an active herpes family infection. I know of patients getting this either from their GP or from a clinic. It's the usual postcode lottery of course. Most of the patients I know paid for private herpes family tests first though.

I'm taking Valtrex but unable to get a UK NHS prescription for it. Private doc.

Did used to get antifungal drugs way back when I had infections from the NHS. Not Lamisil though. Most PWME try Nystatin and Ketaconazole and Fluconazole that I know of.

What you probably need to look at are the NICE guidelines for treating CFS/ME. This is where many of our current problems come from. The NICE guidelines were introduced and many GPs/consultants in the NHS stick to these. We fought then introduction of the NICE guidelines every step of the way and lost. Because CBT and GET were the main treatments recommended there that is what we get.

The trick is not to mention ME to your GP. Try to get them to treat your symptoms instead i.e. if you want an antifungal go to your doc with a fungal infection and don't mention ME. Some drugs can be prescribed for different purposes and patients learn what the alternatives are to try and get the drugs. (i.e. for "restless legs" or something else)

There may be a good or reasonable ME doctor or clinic in your area. If not, then you are faced with seeing a private doctor, buying your own drugs off the internet, trying alternative treatments that are available (i.e. supplements that may do the same job as the prescription drugs) etc.

NHS GP's don't believe in long term AB use. I had to get my NHS conusltant to prescribe these for a sinus infection. Once again it was a question of finding a sympom that could be treated and not mentioning ME.

I've brought in published research on antiviral treatment to my GP and been turned down.

Other NHS patients invent reasons to get them i.e. doxycycline is available long term as a propxlaxis for malaria if travelling.

Your GP isn't likely to be impressed by any "scientific reasoning" if s/he is following the NICE Guidlines.

Good luck.