I'm still on the fence about next steps on abx treatment since my decent into neuro/MS symptom hell on just 1 week of flagyl/3 weeks diflucan(at end of November!).I've not comeout of it and still getting new and scary neuro symptoms. I know the drugs triggered this "attack" and I think it is much more than a herx.
I've emailed 1 person with MS who got much worse on abx protocol and could not endure it.
For those with MS or MS symptoms-have you gotten better? Did abx make you much worse with no improvement?
I wish there were more info on treatment outcomes for neurological/MS symptoms. There is the wheldon protocol but even data on that seems sketchy. I'm so sick now I don't feel like I could add abx into the mix and wonder for some of us is toxicity the issue?
Posts: 200 | From New England | Registered: Dec 2009
| IP: Logged |
posted
I can't speak to your MS-specific experiences but I can tell you that my experience on antibiotics was initially horrid. My herxheimer reaction was so severe I was hospitalized as my body was literally just shutting down. I was sicker my first 3 months on antibiotics than my worst days pre-antibiotics.
Somehow I got through those first few months (most challenging thing I could ever imagine going through) and things started to slowly but surely start getting better.
20 months of treatment and I'm functioning normally again. Still have some residual symptoms but totally tolerable and I've been off treatment over a year now.
My symptoms were all considered neuro.
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
posted
Please google The Liberation Treatment for MS. It is a treatment devised by Dr. Zamboni for stenosis in the jugular veins of most MS patients. Dr. Dake at Stanford is now in clinical trials.
The stenosis is caused by "who knows" so blood goes into the brain but cannot return thus depositing iron in the brain and leaving the white spots. People who have had this treatment...placements of stents in the jugulars...have stop all symptoms and have improved with no reaccurence of symptoms.
I will PM you the website with info. I still think the thick blood/stenosis in the veins are caused by viral/bacterial etiology thus damaging the veins.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes, Yes, Yes! Mine has gotten a lot better on
antibiotics. It is as you describe. Keep
electrolytes going in. Keep yeast away. And keep
probiotics on board to protect the bowels.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
Today is not a good day for me to post (see some recent posts) but I would really like to discuss it with you. So maybe tomorrow.
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I definately got better & since abx treatment 6 yrs...NO NEW LESIONS. Been off abxs since 4/09.
I.V. Tigrecyl was the ticket for me.
BTW 17yrs told MS before finding about Lyme & a LLMD.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Yes....I had all the classic MS symptoms just before being dx with Lyme. My MS symptoms went away with oral abx treatment (I've been in treatment for 23 months) but after going off abx for a few months the L'hermittes sign and hyper-reflexia came back. Back to orals and feeling better.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
posted
Flagyl is proving very rough for me too. My LLMD just said to decrease some and increase slower this time.
I guess I am just too anxious to get those cysts this time!!
But way back when with tons of dizziness and tingling they told me I had MS. They were wrong.
Posts: 472 | From New Jersey | Registered: Dec 2007
| 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!
![[Smile]](smile.gif)
Printer-friendly view of this topic