Jim (was re: on the likely...)

[Guest guest]

Hi Jim, forgive me if I am asking something youve already posted, but

could you share your approach / theory to treatment in a nutshell?

If it's something you've already posted to the list could you email me

privately? blue89@...

Thanks!

>

> ,

>

> Do not give up hope. I have helped a couple people reverse

symptoms

> of fibromyalgia, and I think CFS is very similar and may show as

good

> results. The numbers are now too small to say definitively that the

> program will work for all, though the success rate is 4 for 4, 100%.

> Next week I will be actively trying to get more people to help

> validate the program. The results will eventually be posted on our

> web site.

>

> I may be headed out your way in the next few weeks (San /Santa

> Cruz) to give a presentation.

>

> Based on my understanding of the condition there will never be the

> magic pill that the pharmaceutical companies are hoping to find and

so

> instead of looking at what is available and may help they profit

from

> throwing medications at the symptoms, never addressing the root

cause.

>

> Hang in there, the situation is not hopeless.

>

> All the best,

> Jim

> clements@x...

>

>

>

>

> > On the likelihood of ever getting better (long)...

> >

> > Hi folks, this post is definitely treatment / research related so

> > please don't be p'd off at me for posting a rant. I'm

> > severely

> > dejected after a visit with my primary care doc. Very cool guy, up

> on

> > CFS, has many CFS patients. He is my local doctor in San

Francisco.

> > He communicates with Dr. in Incline Village, NV (whom I

> also

> > see) to discuss my case and treat me accordingly.

> >

> > Today I saw my local doc. I'm not saying his name. Remember it is

> > NOT

> > Dr. . I left feeling very discouraged. I was telling him

how

> > I have found that in the past few months, I seem to have had

> > more " up " periods than ever before – mind you all since

> > trying

> > ImmunoCal and Doxycycline. Certainly not major improvement or

> > recovery, but noticeably more up periods, working overtime, not

> > crashing too badly. But then this weekend I was crushed. Aching,

> > fluish fatigue with an intensity that is very abnormal for me –

> > like

> > the beginning of a bad flu. Point is, my doc told me not to get

too

> > excited about the " up " periods because they are just the

> > illness

> > cycling. No, I begged him, please don't take away my hopes for

> > improvement. Most people don't get better, he said. Most people

> > eventually accept their limitations and live with it.

> >

> > I said " well, I'm still working on accepting my CURRENT

> > limitations

> > with the HOPE AND OPTIMISM that there may be improvement or even

> > recovery in the future. " Usually I get somewhat of a pep talk

> > from

> > him along this line, and even from my other doc. But this time he

> > seemed to be saying " accept your limitations, period. " He

> > even

> > said " This may last the rest of your life. " I've lived in

> > dreaded

> > fear of that cold hard possibility for the last 4 years (since

> > getting sick), but this just makes me feel worse. Does anyone feel

> > like if this " lasts the rest of your life " , that the rest of

> > your

> > life won't be very long?

> >

> > But no! Wait!, I say. I've read of many people on the lists and

> > in

> > articles who have improved greatly, if not fully recovered,

leading

> > almost normal lives, whether due to simply resting and time, or by

> > trying treatments, even after many years of illness. Please don't

> > take that away from me. His response? THEY are the exceptions.

Most

> > people don't get better.

> >

> > By the way, he's generally a very good doctor and he wasn't

> > delivering this information to me in a nasty or rude way. He's

> > very

> > nice. But it was the content. Argh!

> >

> > So I said, " well, doc, if I am never going to recover than why am

> > I

> > on this merry-go-round of tests for the last 4 years? "

> >

> > " Because we may be able to find some things that help a

> > little. " A

> > LITTLE? A little might get me to the age of 35 (I'm 31 now), but

> > not

> > much further.

> >

> > Then he went on to give me the happy little tidbit that at the

> > Seattle Conference (which he did attend), the buzz in the

> > " hall "

> > (i.e. not formally presented) was that Ampligen is a bust. " Too

> > many

> > side effects, not enough benefit. "

> >

> > Oh great. The icing on the cake. I'm on my pity-pot here. Please

> > don't get mad at me. I'm sorry for bringing anyone down. It just

> > makes me wonder, what the hell are we doing? Are we all wasting

our

> > time and money trying to get well? Will the reasearch pan out

ever?

> > Does anyone really ever get better? I know I've heard people do,

> > but

> > it seems so unreal.

> >

> > , pity-potting in