I think I may have chronic Lyme

[indianasciencelady]

I just finished reading Dave's latest chapter and I feel like we are living parallel lives. A little about me then a question. i was "diagnosed" with MS after 3 neurologists, a myriad of symptoms and failed treatments. Despite 9 rounds of Ocrevus, I've gotten steadily worse. I went from walking sticks to wheelchair in 5 years. I stopped Ocrevus a year ago and I feel good--no relapse etc, but I do continue to progress. Ironically, I have also had recurrent UTIs this year and each time I took antibiotics I FELT BETTER. a lot better. So much so that I asked my neurologist and she said she had no idea. I made an appointment with my DO to discuss this, but now I am wondering, what are my next steps?
Do I ask for antibiotics? Which ones? For how long?

[Pistachio]

The gold standard for Lyme antibiotics is an IV administered antibiotic - ceftriaxone. It can be administered at home. You get a PICC line inserted by a surgeon and radiologist from your upper arm and up into the superior vena cava near your heart. Standard treatment is 21 days. It's not long enough but that's "standard".

I had this done in Oct, 2021. Before that I did 3 months of oral minocycline. I've also done the Bruhner protocol of herbs.

ETA: after I had the ceftriaxone my drenching night sweats stopped. These are known Lyme symptoms. I still have other Lyme symptoms, though.

[indianasciencelady]

I hope my DO has a clue...sigh. i just want to call all of my doctors to task and challenge them to figure this out. I suspected Lyme 9 years ago and had the testing done and it showed that I have Abs but not an active infection.

[Pistachio]

I hope my DO has a clue...sigh. i just want to call all of my doctors to task and challenge them to figure this out. I suspected Lyme 9 years ago and had the testing done and it showed that I have Abs but not an active infection.

Standard North American Lyme tests - ELISA & Western Blot - are wildly inaccurate. This is widely known even within the medical community. Also, Lyme can encapsulate itself inside body tissues to evade detection. What boggles my mind most is the laissez faire attitude medicine and the public has. If this was cancer the level of testing inaccuracy would be considered not only unacceptable but abhorrent.

[Becca from Cali]

The thing to do next is find an LLMD, a Lyme-Literate-MD/doctor. The way the CDC has played their cards, insurance won't cover it. ID doctors won't touch it, and many MD's are admittedly clueless on how to treat Lyme. The guidelines are woefully outdated, and folks have been fighting for years to get treatments covered by insurance, to no avail. Any search you do online will eventually reveal how messed up the current Lyme Disease situation is. In many states, doctors who treated patients with Lyme with IV antibiotics long-term (as is warranted) have lost their licenses to practice medicine as some have cry foul for treating longer than 28-days of Doxycycline. Why? Because 28 days of Doxycycline is the official "cure" even though the CDC admits this doesn't always work... It's grim.

[tv1002]

I had my 1st Lyme test last week, and the ELISA result came back very low. It is considered negative by CDC standards. But something did show up, something is there…and I’ve been having terrible debilitating symptoms of muscle pain in my legs & knee joints for years.

I was bit by a tick 30 years ago when I was 11. I was diagnosed with MS 21 years ago.

Anyone else experiencing this??? By CDC standard, this doesn’t quality for Lyme Disease. I think Doxycycline would help me tho.

[Pistachio]

I had my 1st Lyme test last week, and the ELISA result came back very low. It is considered negative by CDC standards. But something did show up, something is there…and I’ve been having terrible debilitating symptoms of muscle pain in my legs & knee joints for years.

I was bit by a tick 30 years ago when I was 11. I was diagnosed with MS 21 years ago.

Anyone else experiencing this??? By CDC standard, this doesn’t quality for Lyme Disease. I think Doxycycline would help me tho.

Ask for a Western Blot. If you get any positive on an ELISA it's supposed to be followed up with a Western Blot.

[MSLazarus]

Ok….in the early 80’s my husband and I got sick. For almost a year we were in big trouble. No energy..at all and night sweats and a million other things. No one knew what was wrong or tried to find out. Finally a friend packed us in her car and we went to Boston and saw Dr. Alan Steere who first identified LYme.

he diagnosed us easily. I forget if he gave us a course of antibiotics but we had gone untreated for a year. Steere later wrote a paper about the possibility of untreated Lyme morphing into MS. Bingo. That’s me.

that’s all I remember now. Long time ago. However, we have both continued to be active and move around in this world!

p.s. I am on kesimpta now. Years on rituxan, on Novantrone on IVIg. I love kesimpta. The hospital ships it to my house once a month and I give myself the shot.