RE: ; CSM me too-

[Guest guest]

>>>On Behalf Of L

I started CSM in mid January. I had some immediate results but it is not

addressing everything at least for me. I go back for my 12 week followup in

a few weeks. I also have MS and doc had thought CSM would address all of

this but this really isn't holding true from what I can see. I had another

follow-up 90 day MRI today after what seems to be 7 straight days of

exacerbation. Still having trouble with walking and such but trying to hang

in there. Anyway, like I said CSM did initially seem to address certain

problems and some addressed that hadn't been addressed in a along time but

it is not proving to be the total cure for me.A bit frustrated but hanging

in there.>>

Keep hanging in there things will get better. However, from what I

understand CSM is not the cure all that your physician led you to believe;

it's only part of a protocol. I'm sorry your physician thought the CSM

would cure you. Even Dr. Shoemaker uses a number of protocols designed for

each individual with CSM being only one. Your MS complicates matters and

depending upon the severity of your MS and how it has affected your body

other protocols will be necessary to address your MS.

Any idea what exacerbated your MS? Are you keeping a food/symptoms/activity

log which can sometimes help? It's work but you can always reference it to

find some possible causative factors. Have you considered any food

allergies/intolerance and making some changes such as has done and I

do?

Rosie

[Guest guest]

Good Morning :

I'm sorry you are not responding as you and your physician had expected with

the CSM.

>>>Yes 18 months later, I am already doing that and had seen lots of

improvement but now having a big exacerbation and I don't think so easy to

just blame on some food I ate. Hopefully the emergency MRI they did Friday

will show a new lesion or some other change in my MRIs . They repeat the

MRIs every 3 months because I have had so many MRI changes and brain

vascular changes in recent years.Doc wants me back in the hospital. I

declined and am standing by and hoping as usual for remission of

symptoms..Jut not sure why things got so much worse so fast.>>>

I believe you misunderstood me. I did not 100% state that food is

causing your current symptoms. I only suggested/asked if you are keeping a

food/symptom/activity log. I record what I ingested, the weather, my

activities, symptoms and anything else I might want to reference at a later

time. Last week I felt puny and figured out with the knowledge K.C.'s wife

had shared with me that often a major change in weather will cause symptoms.

After the front came in I felt wonderful, back to my normal self.

I'm hoping also for remission for you. Just in case you haven't seen this I

thought I'd copy and paste for you:

http://www.moldwarriors.com/mold-illness-faqs.cfm

" Took CSM for my neurotoxic illness but I'm not any better. Why not?

Cholestyramine (CSM) therapy is just the first step in a series of steps

that are followed sequentially. Do one intervention at a time! All biotoxic

illness patients, for example, follow one month of CSM therapy before

beginning the second step. If there is a biofilm-forming, multiply

antibiotic resistant coagulase negative Staph colonizing your nose, that

organism must be eradicated. If there is auto immunity present, those

complicating factors must be identified and changes initiated. If there are

reductions of levels of VEGF, that also needs to be identified and treated.

There are some people, especially those with 4-3-53 and the 11/12, 3-52B

genotype, who frequently won't get better. We're using new therapies for

these patients and hope to have results to report shortly. "

Rosie

[Guest guest]

>>-On Behalf Of L

I keep a regular diary of exacerbations, symptoms, foods eaten, changes in

symptoms, changes in humidity, and weather circumstances, and notes re when

I see doctors etc to correlate this back .Still isn't making me feel better

so I guess I remain frustrated.>>>

I'm impressed that you are recording so much! Proud of you.

Giggles your charts cannot make you feel better; they are only simple, free

tools to possibly see correlation of your flares not medicine that will have

action in your body.

Rosie