posted
hello---i was dx with ms in march 1987. started going to holistic doc in october 2006 and started ldn-low dose naltrexone. i have experienced no further progression since then.
blood draw in june 2007 checked for lymes and came back with a few +bands and showed erlichea coinfection. i was shocked but started the full cowden protocol and did all the herbs etc until april / may 2008. at that time, blood draw did show slight improvement in the readings. holistic doc asked me to confer with a llmd.
i did and agreed to start antibiotic --- (tetracycline, 500mg, 2pills, 2x/day). i started them 5-23-2008 and am now on my 3rd refill/month. omgosh! i herx'd just a bit for about 2 weeks---for the past 2 weeks, tho, i am 'burning' like crazy---upper and lower back, thighs, shins! omgosh---
do u think this is additional herxing? will it ever end? does this mean the l;ittle buggers are being killed??! i appreciate all thoughts and comments.
i visit another board and donna/ct has talked about her llmd's research of "lyme induced ms"---she was kind enuf to send me a cd of a presentation he made and it started making sense after i rewatched it. while i initially wondered if i ever had ms, i now assume i have neurological lyme disease or "lyme induced ms"--got me, i've kinda decided it does not really matter---i do have something.
thanks alot!
-------------------- grape
*DX w/ MS March 1987 *Tested + for several lyme bands and erlichea July 2007 *Full Cowden protocol 7/07 - 4/08 *2000mg tetracycline since May 2008 Posts: 18 | From maryland | Registered: Jan 2008
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hi,
I have never experienced that burning sensation. But I do know of others here who have.
Sometimes, it is described as a type of Neuropathy, which is quite common with tick-borne diseases.
I'm bumping this up for input from others before you drop off the page.
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
posted
thank you, melanie! i am going to search key word on this site---i couldnt find 'search' yesterday, but i know it is here! i will look again!
-------------------- grape
*DX w/ MS March 1987 *Tested + for several lyme bands and erlichea July 2007 *Full Cowden protocol 7/07 - 4/08 *2000mg tetracycline since May 2008 Posts: 18 | From maryland | Registered: Jan 2008
| IP: Logged |
I have to slowly increase the dosage of any antibiotic I take, because I have a hard time dealing with the herxheimer reaction they cause me.
I'm only taking 750mg/day of it now and can barely tolerate my herxing, although I'm, eventually, supposed to take a maximum of 1,500mg/day of it, if possible.
When it gets really hard to tolerate a herxheimer reaction, I always try to do more things to detox, which helps.
Try that and see if it helps you too.
If you search here, you'll find a lot of good suggestions on how to detox.
By the way, cute username.
I hope this helps.
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
posted
thank you for responding, jennie! i will search detox and see what i find.
i am sorry you have such a difficult time with herxing and abx! do you think the tetracycline is helping, tho? i pray so!
i love to drink grape koolaid---hence, the name. i am trying to stay away from sugar and sugar substitutes now so have not had my koolaid fix for 18 months! i have not wanted to try it using 'stevia'!
take care and thanks for your suggestion!
-------------------- grape
*DX w/ MS March 1987 *Tested + for several lyme bands and erlichea July 2007 *Full Cowden protocol 7/07 - 4/08 *2000mg tetracycline since May 2008 Posts: 18 | From maryland | Registered: Jan 2008
| IP: Logged |
I do believe Tetracycline is helping me, which is why I'm determined to stay on it.
I feel like if I'm already seeing some improvements after only several weeks and at half of the maximum dose, then the longer and more of it I take I will improve even more.
Thanks for the explanation of your name!
That's cute.
If you get to missing your grape koolaid too much, try the stevia.
I really don't think it's too bad.
To each their own though, I know.
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
posted
yae---i am glad u r doing better! amen, hallelujah---i feel pretty good except for the "burning", but need to practice walking so that i can get up and out of my w/c---i will do it!!!!
-------------------- grape
*DX w/ MS March 1987 *Tested + for several lyme bands and erlichea July 2007 *Full Cowden protocol 7/07 - 4/08 *2000mg tetracycline since May 2008 Posts: 18 | From maryland | Registered: Jan 2008
| IP: Logged |
I'm so glad to hear you're feeling pretty good, except for the burning!
I hope that gets better for you soon!
Best wishes to you with your walking, so you can get out of your wheelchair!
You can do it!!!
Think positive - Yes I can, Yes I can, Yes I can!!!
I have faith in you!!!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[confused]](graemlins/confused.gif)
do u think this is additional herxing? will it ever end? does this mean the l;ittle buggers are being killed??! ![[cussing]](graemlins/cussing.gif)
![[Big Grin]](biggrin.gif)
i appreciate all thoughts and comments. ![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic