NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   The Stumble Inn (https://www.neurotalk.org/the-stumble-inn/)
-   -   Lyme Disease (https://www.neurotalk.org/the-stumble-inn/52274-lyme-disease.html)

AfterMyNap 08-16-2008 10:33 PM

Thanks for the update, Jules. That's pretty sucky, glad you're on the mend. I agree, we really should get a free pass from other junk; mods? Can you arrange that for us?:cool:

MSacorn 08-17-2008 12:05 AM

Jules
Happy you are recovering nicely. Keep feeling better. Good job standing up for yourself too!

:hug:'s

Bearygood 08-17-2008 10:07 AM

Jules, I am so glad you caught this!! Big kudos to you for being so proactive and big :hug:s to you for a speedy and complete recovery! It sounds like you caught it early -- for how long are they recommending antibiotics and what kind?

lady_express_44 08-17-2008 11:01 AM

Quote:

Originally Posted by Jules A (Post 348145)
my MS seems to be as close to text book RRMS as there is with eye issues that have resolved and some paresthesia

"If medical treatment is delayed, lyme disease can cause arthritis, heart, neurological, and visual problems, often, many years after the infection."

http://www.msha.gov/illness_preventi...ymedisease.htm

- Lyme can be disseminated in Time and Space
- Lyme can cause signal abnormalities on MRI scan of the brain.
- CSF will show positive PCR (Polymerase chain reaction)http://www.neurology.wisc.edu/public...bs/Neuro_2.pdf
- Lyme (Borrelia burgdorferi) can show O-bands
http://www.diseasesdatabase.com/resu...ClassSort=True

About testing for Lyme:

http://www.canlyme.com/labtests.html

Any idea when/where you picked up the Lyme?

Cherie

Bearygood 08-17-2008 11:36 AM

I'm one of those people who definitely believes there are some MS patients walking around who've been misdxed. I'm under the impression though that high fevers are associated with the primary stages which is why I didn't go the conspiracy route here. :)

Re-infection is a whole 'nother story though. It's very possible and I've seen people to whom this has happened. :(

Jules A 08-17-2008 12:00 PM

Quote:

Originally Posted by lady_express_44 (Post 348745)
Any idea when/where you picked up the Lyme?Cherie

Thank you for being a lady Miss Cherie, I have had a couple of my crude friends ask if I was rolling around in the bushes! :eek: I've been bitten by two tics in the last few of months while walking my pooch in the woods.

I didn't think the Lyme type neuro issues remitted but were more constant, is that wrong?

Bearygood, I've been on oral Doxycycline for 14 days and will be seeing an infectious disease specialist for a follow up.

Cindy I'm writing the proposal today to ensure that only 1 stinking disease per person will be allowed in the future.

Thanks again to everyone who replied. The moral support and insight from this group is incredible!

:grouphug:

Bearygood 08-17-2008 12:36 PM

Quote:

Originally Posted by Jules A (Post 348783)
I didn't think the Lyme type neuro issues remitted but were more constant, is that wrong?

Jules, this is an excellent question. I've heard people refer to their sx as "waxing and waning" but never thought of it in terms of complete remission. I'd like to know the answer to this myself.

On another note, one thing I constantly read about is the importance for checking for co-infections (Babesiosis, HME and HGE types of Ehrlichiosis, Bartonella and Mycoplasma) so make sure everything's been covered when you go see the doc! As you probably know, most Lyme folks say that the way to go in terms of labs is IGeneX. They'll send you a free kit if you call them. They're very helpful and if you explain your situation they'll recommend which panels to do.

Gee, if it's confirmed that Lyme does completely remit, I might be sending in my own kit! :eek:

Erin524 08-17-2008 01:24 PM

Quote:

Originally Posted by Bearygood (Post 348809)
Jules, this is an excellent question. I've heard people refer to their sx as "waxing and waning" but never thought of it in terms of complete remission. I'd like to know the answer to this myself.

On another note, one thing I constantly read about is the importance for checking for co-infections (Babesiosis, HME and HGE types of Ehrlichiosis, Bartonella and Mycoplasma) so make sure everything's been covered when you go see the doc! As you probably know, most Lyme folks say that the way to go in terms of labs is IGeneX. They'll send you a free kit if you call them. They're very helpful and if you explain your situation they'll recommend which panels to do.

Gee, if it's confirmed that Lyme does completely remit, I might be sending in my own kit! :eek:


I have one of those kits that tests for all the co-infections. I just havent gotten the blood draw for it yet...the test costs about $600 (out of pocket, Igenex doesnt take insurance)

My regular doctor said that when I'm ready for the test, he'll do the blood draws for me, for the cost of a lab visit at his office. (lab visit is about $15 - $30)

lady_express_44 08-17-2008 01:44 PM

Quote:

Originally Posted by Jules A (Post 348783)
Thank you for being a lady Miss Cherie, I have had a couple of my crude friends ask if I was rolling around in the bushes! :eek: I've been bitten by two tics in the last few of months while walking my pooch in the woods.

I didn't think the Lyme type neuro issues remitted but were more constant, is that wrong?

Woohooo!!! Here I thought we were going get a juicey, exciting story out of you . . . but you just leave us hangin'.

(I live vicariously, what can I say? :p)

Yes, it can wax and wane (dissemination in time) as per the 2nd link in my prior message. It also says:

"Many authorities list Lyme disease high on the differential
diagnosis of MS as a disease of young people capable
of causing white-matter symptoms, sometimes relapsing and
remitting
, occasionally with MRI changes mimicking MS."

It would be rare indeed, Jules, that Lyme would be misdiagnosed as MS . . . but I've heard of it happening on the forums. :cool:

Cherie

Natalie8 08-17-2008 01:51 PM

Jules, I'm glad you are feeling much better and that you went for that second opinion. Yikes. Lyme and MS is just not fair, right? You would think one would be enough!

When I first got diagnosed with MS I was running low grade fevers and had optic neuritis and dizziness. They kept saying the fevers weren't part of MS and they were confused. Oh yeah, and I had been in Washington DC and had a strange rash for a couple of weeks. I swear something bit me. So the docs thought it could be lyme because the bacteria can actually get into your neurological system and cause eye issues and dizziness. I don't know how much reading you have done about lyme but there is a big controversy in the field between several groups of doctors and the reliability of tests. The lab they used in the hospital (when I was admitted for IV steroids) said no lyme. But on my own I sent my blood to IgeneX in San Francisco and it came back positive for lyme by CDC standards! In other words, I had all the right bands that count for a lyme diagnosis according to the CDC. I found a doctor who agreed with me. I went on doxycycline and what do you know--the fevers went away! With neurological lyme issues the lyme literate doctors also recommend a month of IV antibiotics. So I did that too. Not fun--I had to have a PICC line put into my arm for a month. But it made me feel even better than doxy. I was quite proactive and aggressive about getting the correct treatment. I figured if I really did have lyme I wanted to knock it out for good before I began MS treatments. Lyme symptoms can definitely wax and wane.

Anyhow, I think I had lyme and MS together. The spinal tap, the visual evoked potentials, and classic Dawson's finger lesions screamed MS. But the antibiotics definitely made me feel so much better. And now the Tysabri is giving me the rest of my energy back.

I'm glad you got this straightened out. Those fevers are just the worst!!!!

And stay away from those tics!! :D


All times are GMT -5. The time now is 09:10 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.