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hezzer926
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 6/8/2009 8:57 AM (GMT -7)   
My llmd, Dr. R, in nyc.. declared me in remission based on decreasing symptoms and ART... He believes my remaining symptoms are from toxin build up , meds side effects, inflammation, etc...

I am on a 10 week antibiotic holiday and we'll see how I respond..

My question is: Should I get massages? (My back is a little achey as well as neck).. Im just worried it will stir up spirochetes deep in the tissues and there are no anitbiotics to kill them at this time.. advice please

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/8/2009 9:19 AM (GMT -7)   
Congratulations and good luck with the drug holiday. Sorry I can't offer advice re the massage.

How long were you treated? Dr. R is also my doctor.

hezzer926
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 6/8/2009 9:46 AM (GMT -7)   
I was treated 2 months prior to seeing him and now 8 months with him.. I was taken back when he said I was in remission because I really didn't feel like it but these past few days off of medicine have been better than on them so I'm hoping I'll continue to improve.. Either way, I think an anitbiotic holiday is necessary

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/8/2009 10:22 AM (GMT -7)   
Would you mind telling me what your worst symptoms were and what meds he had you on?

I've been on Mino, Mepron, Zithro and Art since February and started IV Rocephin in March. He's now thinking I will need to be on IV's for a year and not the six months I was hoping for.

hezzer926
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 6/8/2009 3:35 PM (GMT -7)   
Sure... my worst symptoms were fatigue, stiff neck (esp at base of skull), head twitching, bad hot flashes (my face esp).. but had/have more.. esp. issues w/my temperature.. my hands and feet are always cold and my face gets hot

I started out w/mepron in November w/zithro.. that didnt do much.. For me, I think the thing that worked best was the Ketek in combination with the mepron.. I had to stop it once for a week due to elevated liver enzymes but that was after like 4 months.. Ketek was the only thing that I think helped me..

So, I was on mepron, ketek, nystatin powder, and diflucan...

Before that I had been on omnicef, rifampin (did something i believe), mepron, and zithromax

(I tried minocycline.. couldnt handle the side effects)

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/8/2009 4:52 PM (GMT -7)   
Thanks. I hope you continue to improve.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 6/8/2009 7:36 PM (GMT -7)   
hezzer --

You're symptoms sound a lot like mine and I too am on a self- imposed antibiotic holiday. My symptoms worsened while on them and I haven't gotten quite back...I still have see stars and my neck has by far more issues -- all while healing with antibiotics.

Anyways, gentle exercise will get you over this hurdle. It should be everyday -- whether it be a walk (not in the heat mind you) or a dip in the pool, you must exercise.

A massage is ideal too.

Congrats and good luck! I don't think we can or should be antibiotics forever. Have faith in your own body's healing power.
Bit June 08.


hezzer926
Regular Member


Date Joined Sep 2008
Total Posts : 285
   Posted 6/9/2009 1:30 PM (GMT -7)   
Hoping to find cure- would I be able to email you? I have some questions..

Lala429
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 6/17/2009 9:39 AM (GMT -7)   
I had a massage last Saturday and the entire day I felt horrible - I drank lots of water and rested and, although I was sore the next day, I felt a little better. But if you do get one, be prepared to feel like poo on the day it's done.
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