Shahbah's blog

metallic taste

Submitted by Shahbah on Thu, 2011-04-28 16:05

Hi there!!

I am happy to report that I feel a little beter today than I have felt last week... it was really a terrible one...argh...

So my next question is: every once in a while (I'd say every 3 or  months) i get this weird metallic taste in my mouth... does anybody get that? What is it from?

My levels of iron check fine...

Thanks again for your incredible support... 

burning scalp anyone?

Submitted by Shahbah on Tue, 2011-04-19 19:42
Hi
Since last friday I have been going through what seems like a horrible relapse... basically I am in bed all day, crying all day , in so much pain and burning... and now my scalp is burning, it hurts to even touch it... I just can't deal with this anmore, i don't know what to do with myslef and whish i could find a way to die easily because I am fed up with this suffering...

Pressure headaches

Submitted by Shahbah on Mon, 2011-03-28 14:31

Helo everybody

 

It's been a while I haven't posted here but been reading:-)

I was just wondering if any of you have suffered from what I would call pressure headaches and got rif of them...

I have been dealing with this debilitation sort of headache, it really feels like a tight band around my head and no abx seems to make it better, has anyone dealt with this? Mine has been going on for two years now...

Thanks for your help. 

Neuromelanin and why CAP does not work for some of us- PLEASE READ

Submitted by Shahbah on Sun, 2010-10-31 00:17

I have been desperately looking for an explanation about why some of us succeed , others don't... I will not detail my research, but I came to the following hypothesis which i will continue researching: I think there are two forms of MS and  the most dangerous of them is the one where neuromelanin plays the worst part: neuromelanin is being studied mostly in parkinson disease but I strongly believe it should also be studied for MS. Basically this neuromelanin is a sort of cell that captures iron, heavy metals, drugs and wathever can be called "oxidative stress" in the brain... This neuromelanin is what some MS sufferers see as "black holes" on their MRIs...

Nerve pain, what to do now?

Submitted by Shahbah on Thu, 2010-10-21 15:46

Hi all

Finally, what I thoguht were my headaches are actually nerve pain!!! I now have this nerve pain everywhere in my body from head to toes,, it is really unbearrable, evry place i put my finger on hurts!!! I guess this is simply called demyelinization! I have been taking a lot of B complex as well as a lot of B12, but the B12 seems to make it worse which is not logical... 

So all this  means to me  that cpn has basically eaten all my nerve sheaths and I am screwed (sorry for the bad language)...

Any doctor in Boston area?

Submitted by Shahbah on Wed, 2010-10-20 09:54

Ok, yesterday I asked for a dc familiar with CAP in Montreal or DC area with not much success, so weighing my options, I just realized that my aunt lives in Boston and that I could easily go and stay there for a while if I can find a precribing doctor who knows about CAP and also about possible co infections...

Thank you so much to all of you for your help. 

I also think it would be a good idea if we could could have a list of doctors around the world on this website...