Health Organization for Pudendal Education

soo two months before my symptoms began i walkd through a HEAVILY wooded area where I contracted a severe case of poison ivy.. my mom pointed out to me that I had never been tested for anything such as lymes disease which is caused by tic bites.. ive been googling all day and apparently left untreated, lymes disease can cause neuropathies such as PN, fibromyalgia, etc.. i had blood taken today and wont have the results for ten business days.. i was just wondering if anyone on this site for their pn from lymes disease?

Jamie,

There has been some discussion on this forum about Lymes disease. You can use the search function above to find it. Good luck! I hope your blood test is negative.

Interesting thought. I researched the same thing when looking for answers for my daughter (7) who has been suffering since age 4 1/2. Her pediatricians refused to test her for it, and have not to this date. We just got back from seeing Loretta and Dr. Hibner and confrimed dhe has PN. I would love to have that blood test done for her.
Good luck with your pursuit
MOM

I have a co-infection of lyme called anaplasma. My lyme test indicated a past infection rather than an active condition, but that just means I'm not making many antibodies anymore. My PN pain flared and became constant as a result of a herx reaction to antibiotics I was taking for the infection. I also have fibromyalgia, likely caused by the infection. Have had these things for about 25 years, and it has all slowly gotten worse and worse. There seems to be very little information on genital nerve pain and lyme, but my lyme doctor says he has three other patients with genital pain, and they all got better.

I have not gotten better, and my PN pain has been constant for 20 months now. It was intermittent for about 1-1/2 years before that, and was only provoked by intercourse for 20 years before that. So be careful with lyme treatments. If treatment causes the pain to flare, be really conscious of that possibility and back off. I tried to "tough it out", never imagining that I could get permanent nerve damage from too much inflammation. I had no idea people could have constant pain and be unable to sit. Most doctors are clueless about lyme, even more clueless than they are about PN. It's not easy to get tested or treated. You will likely have to find a Lyme Literate Doctor. There are websites that help to find a doctor in the know.

White Falcon wrote:There are websites that help to find a doctor in the know.

White Falcon,

Are you able to post the names of (or links to) the websites on Lyme disease that you find particularly useful?

Thank you!

hii..

thanks for the heads up.. my test came back negative, but I am going to go to a lymes specialist when I return back to the states in july to make sure!

susibee wrote:Are you able to post the names of (or links to) the websites on Lyme disease that you find particularly useful?

Try http://www.MarshallProtocol.com for doctor's names and info to get a list of doctors in your area. A good source for scientific information is http://www.bacteriality.com. These sites are not dedicated to Lyme, but rather all chronic systemic bacterial infections, of which Lyme is only one type. I also read several excellent books on Lyme disease from the public library, but the very best IMHO is Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub.