Re: UPDATERe: please, aid me in my present condition

[Guest guest]

, first of it sounds like you may suffer from Lyme Disease.  In quite a

few

cases Lyme is misdxd as MS. Also, who ever is doing your spinal tab IT IS A LIE

THAT THEY WILL FIND BORRELIA ONLY THAT WAY!!!!  It is actually the least likly

place to find the spirochete there! This bacteria shows in only 12% in patients

in the spinal fluid! Please check out websites like jenna's lyme blog, turn

the

corner foundation. Also, Lyme like MS is a clinical dx, even the CDC points

this

out, so a neg blood test or neg spinal tab should not be the reason for a

dx but

rather the patients history.

My husband also got worse after having seizures from Avonex and then a course of

iv solumedrol! He went down hill to not being able to walk, speak correctly, his

dexterity went down hill, and some severe ataxia issues. After 10 months of

treatmetn with abx (only a few days of every month), oxygene, physical therpay

et al, he is finally getting up hill again, still he has a long way ahead of him

though!

Just saying, your case doesn't sound like " typical " MS in my opinion, when you

go to your doc again be prepared and informed about tests, Lyme vs MS (and of

course you missing the #1 symptom for MS which actually gives this disease it's

name lesions!). In my husbands case it was different yet again, he had 26

lesions after two road side bombs but no MS symptoms he had then concussion

symptoms, and flu like issues, vomitting, rashes, headaches BUT the lesions were

just to inviting for ignorant neuros and call it atypical MS.  Conventional MDs

don't have all the answers, probably the least amount of answers anyway, and

that medicine made my man worse much worse.

Sorry, I sound bitter and I don't mena to but it angers me to pieces when I hear

that these people called physicians honestly try to make us believe they know it

all - THEY DO NOT! They need to get of there behinds and start realizing what

they all don't know.....

Good luck , keep us posted!!!!

Hugs, Bianca

________________________________

To: mscured

Sent: Tue, October 26, 2010 1:09:00 PM

Subject: UPDATERe: please, aid me in my present condition

 

Hey all.

So I have gone only worse after 4 grams of Solumedrol. Hypersensitivity and

paresthesis of whole body from chest down, still able to walk though. Soft

motorics of hands going worse. Belly twitching, not able to feel hunger or full

stomach, difficulties urinate and with bowels. Even pain coming at night, severe

insomnia from steroids. I tried to be positive but now I am beginning to feel

lost.

Brain MRI showed no lesions. Spinal one I am gonna have in 1 month. If I don't

get better, they'll put cyclofosfamide into me on friday, used to treate cancer.

Doctor said it might be from borelia I had some issues with this summer, but the

olny was how to find out is lumbar puncture, which I fear like hell, I suffered

greatly the last one.

Thanks for letting me ramble.

Sincerely

>

> Hi group.

> I confess I post almost only when I have some troubles. But I cant help it and

>hope you can offer me some ideas. For 14 months, I have had not any major

>relapse. And apart from living a spiritually aware lifestyle, on the edge of

>alternative, I have gotten also caught up a lot in the worldly surroundings, be

>it my work, my relationship that is now over, and my gained back social life

and

>all this has brought a lot of stress with it which contributed to my relapse I

>have been having since tuesday. Hypestesis of legs, and whole down part of my

>body, up to my chest, paresthesis of feet fingers, affected bladder function...

>Worsening since then. I am still able to walk,talk,write and think, I am

>grateful for this, yet I still have a strong yearning to be completely cured.

>

> I am well aware this group does not support the use of CRAB drugs. I didnt

want

>to take any either, but the vision of being in a wheelchair forced me to do so.

>I have been on avonex for 13 months now, as well as on the best bet diet.

>Wondering which of it actually works. I tried to heal myself naturally even

this

>time. Meditated, reflected, had a reiki session, but my body is still

>protesting. So I had 1gram of Solumedrol today. Before, it worked instantly.

>Now, almost 11 hours from the infusion, no sign of getting better.

>

> I must confess, last month I slipped a little from the BBD and ate some food

>with lactosis every now and then. I immediately got back to the strist regime

as

>I believe that food is very crucial in healing. I have severe allergy issues.

>Also some boreliosa issues this summer, the blood tests still arent clear.

>Haven't had my 2 amalgams removed yet, I am a little affraid, as there is not

>much awareness in Czech Republic in this field. No one is able to do me Vit-D

>testing and my GP considers me insane when I tell him I take it every day.

> Yesterday, I had a brain and Cervical-spine MRI, showed nothing. Gonna have

>spinal cord MRI soon. Docs sugessted to go to Rebif which I strictly refuse as

I

>have troubles coping with flu-like symptoms on avonex.

>

> My key question is now LDN.

> Can I take it together with Avonex?

> Is it wise to experimentate during a relapse at all?

> Any suggestions what should I do at all?

> I wonder where could I obtain the sample of LDN, so that I could have it

tested

>with my homeopath and healer, before i start taking it. I hope my doc will

>presrcibe it to me, though she was hesitant to do so.

>

>

> Thanks so much.

> Desperate, yet hopnig,

>

>