Demyelinating polyneuropathy and lyme/coinfections

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Regular Member

Date Joined Dec 2008
Total Posts : 51
   Posted 5/14/2009 3:18 PM (GMT -6)   

I am currently on my 9th week of Mepron/Zithromax/Plaquenil along with the Zhang protocol. I was reading on one of the other posts about demyelinating polyneuropathy being huge with Bartonella. I am being treated for lyme/babesiosis for 16 weeks and then on to whatever else.

My question. I have had an increase of this all over since I started treatment. I feel it in my legs, my arms, my hands and head. I read a response that Plaquenil/Zithromax is also used to treat Bartonella. If I've been on these drugs for 9 weeks, shouldn't this be getting better. It is getting worse with treatment and is very scary.

I've had two rounds of neurological testing and the neurological diseases were ruled out. Does this mean I'm not responding to treatment? I've had treatment off/on since Aug. '08 and do feel worse today than before.

Any suggestions would be greatly appreciated.

Regular Member

Date Joined Mar 2009
Total Posts : 24
   Posted 5/14/2009 8:23 PM (GMT -6)   


I read the same post and believe the polyneuropathy comment was related to Bart.  My sister has been treated several times in the past for Bart - so if that's what's causing her current debilitating symptoms, then it didn't work!  Sometime last Fall she restarted Plaquenil/Zitho/Cipro and her symptoms are worse, so I'm really baffled!  They do say that Bart is extremely hard to beat - thinking about switching to herbal protocol to see is that works.

Our appointment with Dr. S was a serious letdown.  I'll share the details with you later but suffice to say I'm now questioning why we ever went!  He commented that with the "superior lyme treatment" she's had for the past 5 years, we shouldn't be sitting in his office.  I could have burst into tears and if you could have seen my sister face - well, she was crushed.  He then said something about the overall devastation that lyme is capable of doing can often turn into other diseases.  What's that supposed to mean?  That it's all in my sister's head? 

Very discouraged at this point, and don't really know where to turn.  I've been on this computer literally all day trying to do research on my own - so at this moment in time, I'm brain dead.  I need to sign off and throw myself in bed and go at this again tomorrow.  In the meantime, my sister still can't walk, her legs are so very weak, and now, from mid stomach to the top of her thighs, she's numb on the left side.  Oh, did I mention she's scared out of her mind?  Oh, Dr. S did comment on that - quote "your fear may be standing in your way of healing, so you should probably deal with your fear issues".  Now, that is a quote for the book!

You take care of yourself - I'll keep in touch as I hope you will with me.  God bless!

Veteran Member

Date Joined Mar 2009
Total Posts : 674
   Posted 5/14/2009 10:11 PM (GMT -6)   
That F---er. God i have had the stomach to legs pain and left side numbness in a lesser form. Makes me think.
God bless shes lucky to have such a wonderful sister.

In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.

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