If you have lyme in the central nervous system. what is the choice of drug?

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kendal122
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Date Joined May 2007
Total Posts : 1088
   Posted 11/4/2008 1:54 PM (GMT -6)   
Thanks,

Post Edited (kendal122) : 11/4/2008 3:02:16 PM (GMT-7)


georgiagirl
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Date Joined Oct 2007
Total Posts : 1172
   Posted 11/4/2008 6:57 PM (GMT -6)   
Hey Kendall, I have been on IV rocephin since Aug. 18th. It seems to be helping my cns symptoms.

Waiting In Fl
Regular Member


Date Joined Mar 2008
Total Posts : 178
   Posted 11/4/2008 7:21 PM (GMT -6)   

Georgia Girl,

It's me.  I've been too sick to open my computer for a month! But.................I think the drugs are workin!  My LLMD works under the premice that "kill the Lyme first then co-infections".  Well, I did ok on the IV Roc. but the orals killed me (I tried several (about 5 I think).  Long story short, couldn't handle pain but I really think I'm turning the corner!  It turns out the neuro (PAIN- ZAPPING) also included shingles! I'm now able to use my arms, hands again and I could feel the Tindamax (750 mg 2x daily) working! I started it Friday and within 9 hours my arms felt like someone was slowly turning up an electrical current on me!  The worst of it lasted about 10 hours (H. Reaction?) but the pain has really decreased and the use of hands, etc. is much better!  Everyone is different but I am hopeful for the first time! This is the best my CNS has been yet. I am also on Neurontin which I think helps too.

I did get shingles, however and a cold. I am homebound but with no immune system CD57- 37 - I am worried that I will never get my immune system back!

Take care! 


 
 
 
 
 
 
 
 
 
 
 
 
 
Bull's Eye Rash 9/07 (DX as cellulitis)
Menningitis 10/07
Symptpms:headaches, extreme fatigue, insomnia
GP DX "Depressed & busy mom"
Saw Rheumotologist 2/08
Lyme test equivocal
LLMD seen 4/08
Ignex Positive


kendal122
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Date Joined May 2007
Total Posts : 1088
   Posted 11/5/2008 5:48 AM (GMT -6)   
Have any of you use oral for the CNS? if what abx have you used? Thanks,

judy3
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Date Joined Nov 2006
Total Posts : 667
   Posted 11/5/2008 9:10 AM (GMT -6)   
I responded very well to Minocycline and zithro, cant remember the dosage but if you really want to know I can try to see if I can find the dosage, you need to start the Mino very slowly as I herxed terribly the first 5 days

jginkc
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Date Joined Jan 2008
Total Posts : 692
   Posted 11/5/2008 11:43 AM (GMT -6)   
I am coming up on my 4th week of IV rocephin - the fatigue has been unbelivable, but I am now seeing large groups of time where I feel absolutely normal -yesterday from about 3 pm until I went to bed at 11 pm. It has definitely helped clear up a lot of my CNS symptoms - I am starting to feel like myself again for the first time since getting sick.
Month 18 of Lyme and Bartonella
On Zhang, doing much better, but not there yet!

90% functional, feel about 85% of my former self.


nervoustick
Regular Member


Date Joined Jun 2007
Total Posts : 158
   Posted 11/5/2008 7:32 PM (GMT -6)   
Biaxin/Plaquenil with Bicillin Shots helped my CNS symptoms much, since I couldn't go on IV (insurance denial). I still have symptoms--twitching, burning, muscle pain (which I think is CNS related) and headaches--but not nearly as bad.

I had severe proprioception problems, stumbling, could not work my lips to speak, trouble swallowing etc before going on that combo, and I had been treated with ceftin, mino, bicillin (by itself) and other orals before.

However I wish I was able to go on IV.

John

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 11/5/2008 8:08 PM (GMT -6)   
As others have posted IV Rocephin is usually the drug of choice for CNS symptoms. It can be combined with oral Plaquinil which helps the antibiotic penetrate the cell wall. Some oral drugs of choice might be Biaxin with the plaquinil, and slowly add minocycline .

I live in southeastern PA where we have an excellent Lyme organization named The Lyme Disease Association of Southeastern Pennslyvania. The link below takes you to a page where you can print out information from Dr. Burrescano's slide presentation. In it you will find recommendations for drug regimens. Lower down on the page you will find information on antibiotics.

http://www.lymepa.org/html/ldasepa_slide_presentations.html

I had serious central nervous system problems or late stage lyme. It has taken very long and very aggressive treatment for me to get better. The positive news is that I am getting better and I have been so fortunate in that my insurance company has not denied anything - over a years worth of combination IV's along with once a week bandage changes by a home care nurse. Again, I have been so fortunate in many ways but it was not easy at times - wanted to give up because of pain, discouragement, and not much progress in the beginning.

Hang in there and I hope you find a good combination.

auntsissy
New Member


Date Joined Mar 2008
Total Posts : 15
   Posted 11/10/2008 5:10 PM (GMT -6)   
Hello I was just reading this post and was wondering how long you were on the meds before you noticed a change for the better. did you herx? did you get a lot worse then got better?

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 11/10/2008 9:53 PM (GMT -6)   
auntsissy,

Initially there was slight improvement after the first two months of treatment. I did herx many times. Days and days of just feeling sick and doubting the success of treatment. I had some good days here and there but more bad days then good. That lasted for about 8 months. Month 11 and 12 showed the greatest improvement and I am doing quite well. I will continue with aggressive treatment for as long as it takes and as long as I can tolerate it. There are times I just can't believe this is happening but it is and I am very fortunate that my insurance company is cooperating with my physican and paying for my multiple treatments. Someone in the insurance company "gets it" Anyone who believes this doesn't kill people is wrong - it most certainly can.

Hope that answered your question.

Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 11/11/2008 6:12 PM (GMT -6)   
bcaring...

You are a ray of light today! What insurance co do you have? Does your chapter have members from DE?

kendal122
Veteran Member


Date Joined May 2007
Total Posts : 1088
   Posted 11/20/2008 10:33 AM (GMT -6)   
judy3, i would be interested to fining out what dosage you took for zithromax and mino. Thanks,

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 11/20/2008 1:07 PM (GMT -6)   

kendal-I was just on zithro/mino also. My dose was 250mg zithro twice a day and 100mg mino twice a day. I had to start the mino really slow though. It took me two weeks to get up to the 200mg daily. hope this helps.

Kim


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/20/2008 1:21 PM (GMT -6)   

I prefer psycholdelics and almost anything grown in nature, but sold illegally in FL blush shocked rolleyes shocked blush .

Just kidding!  I wish I knew the answer to this one!!!!!!!!!!!!!!


We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


king1234
Regular Member


Date Joined Nov 2006
Total Posts : 491
   Posted 11/20/2008 3:38 PM (GMT -6)   
I was put on doxy zitrho AND flagyl all at once. My LLMD said I may need to switch to IV if I am fully positive via blood when I see her next. She said it is in my CNS
----------------------------------------------------------------------
33 yr old female
 GERD dx March 2007
Migraines with Aura
IBS
SYMPTOMS  migratory joint/bone pain, extreme joint cracking, feet buzzing/vibrating, right eye pain,mid spine soreness (like a constant bruise) fatigue and dizzy spells, bumps and indents on nails. 
New as of Aug-muscle twitching throughout my bod NONSTOP DAILY EVERYWHERE. 
 TESTS-BloodCBC,ANA,Sed rate,Lupus,RA, Vit D,Anti nuc,Calcium.TSH T3 -Too many to list -all CLEAR
 Scans/xraysUltra sound of stomach organs,Sig/colonoscopy (mid way through),MRI of head and spine, full body bone scan-ALL CLEAR
LYME-TESTED POS BAND 31 AND IND ON 34 41 IGM THROUGH IG IN PALO ALTO, GIVEN CLINCAL DX ON 11/17-ON DOXY, ZITHRO, FLAGYL
 
 
 
 
 
 

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