Did any of you have Lyme testing?

[SarahLonglands]

All in all, I don't at all mean to say rationale is not important. Its very important. But its only one guide, an imperfect one, and patient experience is the other guide, and you have to sorta synthesize it all. Patient experience is more applicable, but less controlled. Conclusions made from uncontrolled patient data are more likely to be relevant to your treatment aims, but they are also more likely to be mistaken conclusions in which the action of an uncontrolled variable is producing some sort of illusion or artifact.

Patti, here is some uncontrolled patient experience: The patient (me) was diagnosed in August 2003 with aggressive progressive MS. I tested negative for Lyme disease and not diagnostically positive for CPn. I guess I probably had MS but I have spent plenty of time in lyme endemic areas, so who knows.

However, I was married to a clinical microbiologist who decided to treat me empirically. I was given the following:

Doxycycline 200mg once daily with plenty of water.
Roxithromycin 150mg twice daily.
After two months, metronidizole (Flagyl) was added, 400mg three times a day for five days every three weeks.

After six months, the doxycycline was changed to rifampicin 300mg twice a day.

After one year I was considered improved enough to go on intermittent therapy, doxy/roxy for two weeks every two months, with five days of flagyl, now tinidizole (500mg twice a day) at the end.

In addition to this I took the whole gamut of supplements advised on my husband's website:

http://www.davidwheldon.co.uk/ms-treatment.html


After six months, the doxycycline was changed to rifampicin 300mg twice a day.

After one year I was considered improved enough to go on intermittent therapy, doxy/roxy for two weeks every two months, with five days of flagyl, now tinidizole (500mg twice a day) at the end.


In that time I have gone from an EDSS rating of seven going on eight, to about 1.5.


If you are taking the above, whether he has CPn or borrelia you will hold your husband's infection in stasis, pending your doctor's decision.

Sarah

[SarahLonglands]

Deleted: I kept getting a debug sign on my PC and so reposted!

[SarahLonglands]

Ditto

[SarahLonglands]

.....and again!

[SarahLonglands]

And one more time.......sorry everyone!

(my first experience with Firefox was not a good one!)

[Arron]

Eric, thanks for sharing great information. I noticed you're a new member and wanted to extend a warm welcome to you from our community.

[also the editing should work now-- thanks for pointing that issue out]

[Jimk]

Eric- Great to see you posting here, as well as at CPn Help. You have a lot of thoughtful and informed things to offer. Reading Brorson's study on Tinidazole and Borrelia makes it clear that the basic Cpn protocol, using either tini or flagyl, is a good protocol also for Lyme's. This may suggest that, if Lyme's is suspected as implicated or as coinfection with Cpn, working up to a continuous tini/flagyl dose rather than a pulse may be more in order ie a Stratton protocol vs a Wheldon protocol. Brorson is pretty clear that "When cysts were exposed to TZ, both the spirochetal structures and core structures inside the cysts dissolved, and the production of blebs was significantly reduced." That means the cysts are dead.

I also feel much better on Tini: not just because I'm not so damn nauseated as I was on Flagyl, but on my 5th day of a pulse and feeling so much more energy and clearer headed that I may stay on it longer and see how I benefit from it. That's a first. Before I couldn't wait to get off the pulse! I have had no positive bands on Lyme's, but big load of Cpn.

[CureOrBust]

And one more time.......sorry everyone!

.....and again!

And one more time.......sorry everyone!

Ha! your a little off topic, you should of done this under humor!

[PattiD]

Thanks for your thoughts and comments.

We are meeting with my husband's doc tomorrow. I hope my husband will remain on the Wheldon protocol, I am just not sure how long he can wait to take stronger abx. His lesions extend into his thoracic spine, and he rather feel poorly from abx than have the disease continue.

As a partner is extremely difficult to watch an athletic person have to wall-walk the hall to use the restroom. He is trying to be positive with hope, but he has been tortured by the medical profession in the past year-and its difficult for him to think something will actually help.

Thanks for listening to my concerns.