RE: Re: For Vicki - Re: Please help~ Peripheral Neuropathy -Cooky

[Guest guest]

Thanks Cooky. You are right, I should add another one, I just never knew which

one and my primary looks at me like I am nuts when I ask HER. She will likely

give me RX but she doenst want to be asked as she feels she doenst know the

answer and doenst want to learn either. So I havent known if I should add Zith

or what was the other one...Clidamidacin or something? I cant recall what the 2

main ones people were taking other than the tetracycline family. One began with

an A, but it may have been another word for Zithromax cant recall. I am afraid

of Cipro because its common to cause PN and I wont know if its the med or me.

The worse besides not knowing what antibiotics to take is not knowing if my

conditions are viral and the antibiotics then of no use. The alternative last

doc i saw felt my symptoms were partially bacterial but more viral for which he

said Plaquenil was anti viral! I took just short time as its no cure and my

understanding is its immunomodulator. He wanted me to do the Methylation

protocol and I somewhat have but have no idea if thats the way to go or what the

heck I am doing anymore. I do take the Doxy still daily. 

 

Anyway, we see rhumatologists for our conditions, although they are generally

worthless. What I dont get though, is if our problems are nervous system

related, then why cant neurologists help? All my problems go back to my nervous

system not working; the constant dizziness, the lack of secretions (mucous,

tears, saliva...) and pain & various problems it causes, the lack of sweat, the

nerve pain from the PN, its ALL central nervous system isn't it?

 

Then there are the immunologists and infectious disease specialists that treat

the infections that affect the immune system. although I havent seen such

specialists ever.

 

Our problems affect so many systems, who really is responsible? How do we even

know how to treat ourselves? Do we focus on the immune system? The nervous

system? etc....

Its all so confusing to me, even after all this time. Maybe its the dizziness

making me go nuts. Who knows.

From: C Stonkey <cookee1@...>

Subject: RE: rheumatic Re: For Vicki - Re: Please help~ Peripheral Neuropathy

-MAZ

rheumatic

Date: Sunday, May 11, 2008, 3:01 PM

Vicki, I think I mentioned this once before but I seriously think you should

look into different antibiotics. NOT Metronizol but Cipro, Zithromax or even

add them to the Minocin, there is even the old Keflex you might try. If

your physician cooperates I would try each one for 3 weeks. I know a lot of

people say you need to take them longer but I feel as long as yuo have been

doing this that you should see a difference in 3 weeks if it's going to

happen.

If your doc is not cooperative there are a few web sites that will send meds

without scripts and I have the names of a few if you need them..

Lots of empathy and sympathy .hugs,

cooky

Thanks everyone for your help. I am already taking VitB12 the methyl one,

CQ10 as well as ALA and maybe will add ALC although not sure how much to

take. I take more than the recommended dosage since I am taking for major

issue but dont know when it can be too much. I am also constantly massaging

my hands and feet but its not enough and cant do that at work or when out.

Some people on here sounds like they have carpal tunnel which too is nerve

related but different. Online there was a lot of explanation on PN, it is

some center in Chicago that specializes in it and they talk about the

different types. But dont offer a solution. Medicine has failed me so much,

I still cant believe doctors are allowing for me to walk around dizzy, with

nerve pain that allegedly is damaging my nerves and they cant stop, i say

allegedly as i cant believe what they tell me without wanting to shoot

myself so I try to stay positive, not to mention the sjogrens, I wont

believe

my secretion glands are being destroyed being that people with joints being

destroyed do so well in Mino or Doxy but RA and some other conditions also

seem to generally respond better to AP more than other rheumatic diseases

and I dont know why.,___

[Guest guest]

Sorry this took so long I have been out of town.

If it were me I'd try the Zithromax first for at least six weeks and start

slow. Azithromycin is the same as Zithromax. Ask for brand..I just don't

trust generic (of course if your ins won't pay for brand then try the

generic). I think you take it on the days you don't take your Minocin. If

you decide to get it I will find out.

If your condition is viral try some anti virals. Ask for Zovirax and add it

to the antibiotics. Also add aloe vera OTC..I once asked Ethel which in her

opinion was the top antivalals OTC and this was the first one she

recommended. If you want the rest I will send them.

Please get off Doxy and do Minocin instead. It may be the ticket you are

looking for.

You don't need to see a specialist or an infectious disease doctor.

In your other note you mentioned ALC in conjunction with ALA. What is ALC?

Vicki I am a nurse and I am all for just doing SOMETHING.. ANYTHING. I know

you are tired and disgusted but please just try something .anything.. If I

could jump thru this computer and drag you to the doctor I would :-)))

My daughter says I am too opinionated (sp) so If I get on your nerves just

tell me and I will back off.

Hugs and prayers.

Cooky

Thanks Cooky. You are right, I should add another one, I just never knew

which one and my primary looks at me like I am nuts when I ask HER. She will

likely give me RX but she doenst want to be asked as she feels she doenst

know the answer and doenst want to learn either. So I havent known if I

should add Zith or what was the other one...Clidamidacin or something? I

cant recall what the 2 main ones people were taking other than the

tetracycline family. One began with an A, but it may have been another word

for Zithromax cant recall. I am afraid of Cipro because its common to cause

PN and I wont know if its the med or me.

The worse besides not knowing what antibiotics to take is not knowing if my

conditions are viral and the antibiotics then of no use. The alternative

last doc i saw felt my symptoms were partially bacterial but more viral for

which he said Plaquenil was anti viral! I took just short time as its no

cure and my understanding is its immunomodulator. He wanted me to do the

Methylation protocol and I somewhat have but have no idea if thats the way

to go or what the heck I am doing anymore. I do take the Doxy still daily.

Anyway, we see rhumatologists for our conditions, although they are

generally worthless. What I dont get though, is if our problems are nervous

system related, then why cant neurologists help? All my problems go back to

my nervous system not working; the constant dizziness, the lack of

secretions (mucous, tears, saliva...) and pain & various problems it causes,

the lack of sweat, the nerve pain from the PN, its ALL central nervous

system isn't it?

Then there are the immunologists and infectious disease specialists that

treat the infections that affect the immune system. although I havent seen

such specialists ever.

Our problems affect so many systems, who really is responsible? How do we

even know how to treat ourselves? Do we focus on the immune system? The

nervous system? etc....

Its all so confusing to me, even after all this time. Maybe its the

dizziness making me go nuts. Who knows.