As for your post, I have to say I understand completely the whole “We don’t know what to do for you, but you should be happy that we at least gave it a name” phenomenon that goes on in the medical community, and how frustrating it is! I’m glad that you’ve found something that works for you.

I wonder about misdiagnosis too - a friend who was diagnosed with ME over 30 years ago was re-diagnosed with MS after an MRI scan. The one thing that she found helpful was that after being turned down for DLA before her MS diagnosis (when she was labelled as having ME), she re-applied and was awarded it with no problems. So much for the idea that it’s how your illness affects you rather than what it is - her symptoms and difficulties with everyday life didn’t change at all. Just her diagnosis.

I very much hope that you get improvement with the antibiotic treatment.

Best wishes from sunny Liverpool,

Maggie

This protocol has been designed with combination abx precisely to prevent that. There is currently a study going on at the Vanderbilt Clinic in the US under the control of Dr Charles Stratton and many US patients are directing their Doctors to him for further info and support. In the UK, Dr David Wheldon works with MS patients and will offer advice to their GPs if they are willing to support but many GPs will turn you down flat as mine did.

If you want to try the Protocol then you need to take succinct information to your GP, for heaven’s sake don’t turn up with a mountain of paperwork as they just won’t read it. People on the cpnhelp forum can advise you what to do.

It will be interesting to see what happens over the next few months as in the US, private health insurers have recently announced that they are no longer willing to pay the high prices the drug companies are charging for the MS modifier drugs. Patients who have had to contribute $30 or so a month to get their medication are now being told to pay 10 times or more for the same thing. We suspect the CAP trials at Vanderbilt will suddenly get a lot more takers.

Here in rural Scotland, GP advice was “I don’t know, next?” In a community of 8000, I was 138th person diagnosed with ME that year alone. The most help I ever had was from a microbiologist I saw twice in 15 years: one free copy of his book, 14 chapters of “life sucks, accept that gracefully and you’ll make it easier on yourself”. An emotional self-help book? From the county’s (then) top diagnostician. Gee, thanks. Not.

Being 16, isolated pre-internet, immobilised, and written off? How dare they! I recovered, am 3 years into sustained remission. I believe it’s a miracle as there is certainly no-one else to attribute it to down here.

Thank you Jaybee, and those medical visionaries daring to think outside the box, risking surprising resistance and ostracision by their peers to offer tangible hope, not resignation to futility. All power to those who believe life is for living and worth fighting for, not for enduring discretely outside of the system which discharges its medical and fraternal responsibility to help at the point of labeling with a diagnosis of “can’t help, so won’t help”. And God bless those who squeeze every drop of juice out of every day with eyes wide open looking for solutions, and who refuse to quietly and humbly let a diagnosis overshadow all the sparkle out of their lives.

Extract:

Doctors revisit antibiotics for ‘chronic Lyme’
Saturday, May 3, 2008 HARTFORD, Conn.

The Infectious Diseases Society says it’s never been proven whether these patients still have Lyme disease or something else. The group continues to defend its standards, which say short-term antibiotics are effective for nearly all patients. Long-term antibiotics are unproven and potentially dangerous, because overuse of the drugs can lead to drug-resistant infections, the society says.

Attorney General Richard Blumenthal and advocates say the agreement is the first time the medical establishment has bowed to the pressure of a potential court fight and agreed to re-evaluate care standards. “My main goal all along has been a process that is fair, open and free of conflicts of interest,” Blumenthal said. Blumenthal said his investigation found that some of the 14 experts who approved the 2006 guidelines got consulting fees, research grants and stock ownership from drug companies and other businesses that have a stake in the treatment and diagnosis of Lyme disease.
www.sunjournal.com

I have the serenity prayer thing on a badge (from a cafepress store, I can’t remember which one) Unfortunately it is in the world’s tiniest font, but it is pinned to my noticeboard and I love it.

After this lot, I’ve changed it.

God grant me the guts
to ignore the Doctors I cannot change;
strength to throttle any Neurologists I can;
and wisdom to know a lot of them are idiots.

I get brain fog to a certain extent but my big problem is time. I no longer have any grasp on it. An hour to me can be 5 minutes one day and eight hours the next. My other half thinks this is great as he can swing the lead for hours when I ask for help in the garden and then persuade me I only asked 5 minutes earlier. I’ve also had to tell all my neighbours not to panic if they see me flat on my back in the garden. I seem to have lost the ability to go from squatting down to standing up. I have to go through rolling over backwards first, after which I’m fine.

I’ve got round the drunk assumptions by hanging onto things although I really only develop the left-handed swoops when I’m not concentrating on my walking. I have keyboard dyslexia, my fingers hit the key next to the one I’m after which is a pain. I type fast, I’ve gone from one typo per paragraph to one per word. Thank God for spell checkers.

The most annoying part about all of this is I finally persuaded my other half to buy me a cross-cut sliding laser guided Mitre Saw for Christmas and nobody will let me use it in case I remove my fingers. It’s sitting in its box laughing at me. Grrrrrrr.

And Bruce, we should get together and compare lesions