Very sorry to hear about all you have been through and are still going through.
30 days of IV Rocephin may not have been enough, but it would take a Lyme specialist to assess your situation and make recommendations. It is now not unusual for established Lyme infections to be treated for longer than a year, and there are also other diseases that come from the Lyme ticks that need separate testing and treatment.
If you need a Lyme specialist, send an email to
contact [at] ILADS [dot] org
and tell them your location and what areas you are able to get to. ILADS is the main organization for Lyme docs, and in the years since you became ill, much has been learned about Lyme and other diseases that come along with it, as well as new treatment approaches devised.
All your ailments may not be caused by Lyme, but I would certainly consult with a doc who would not ignore the Lyme aspects or not know what to do about them, and as you already know, there is much ignorance in the medical community about Lyme.
Best wishes to you -- let us know how you do, okay?
I was diagnosed with lyme spinal mennigitis in 1998, since then I have had every type of test there is. I was compaining for 2 years about my pain and the doctor thought i was a drug seeker it was not until I could not move from the couch shivering in pain with right facial paralysis thats when my wife took control and took me to the doctor at first he thought I was drunk My wife gave this doctor a verbal warning and then he could see something was realy wrong. I was on rosephrin I believe with a pic line for thirty days. It worked for the shivering over all pain but 14 years later I have had so many test , operations, and had a growth in my dual donal process to which I lost half of my blood because of the growth was inflamed. and bleeding don't let this happen to your husband . Go to a specialist, Its been two years for me since my last operation and I am going to have another one soon I can feel it. My pain is weird it has a like electric feeling to it like burning. I have lost so much not including my health due to Dr' s not accepting what happens after.
Since it blocked the email try
info AT turnthecorner.org
Hope you can decipher that.
You can also email the folks at turnthecorner.org at ***@****
They can help you find an LLMD as well. Let them know the city and state where you live.
Some (if not most) Infectious Disease (ID) doctors do not believe that Lyme disease can lead to a persistent Lyme infection, and therefore refuse to prescribe antibiotic treatment. However, they do not seem to offer any beneficial treatments either. I know this from a correspondence I started with the head of ID at a prominent medical school in my city. He basically said he will never prescribe it as the infection no longer exists. This directly conflicts with what's on their very own Web site. When I pointed this out, he dismissed me out of hand -- quick. The truth is there is research to support antibiotic therapy but it is rarely cited on government Web sites. I also pointed out to him that maybe research dollars would be better spent in coming up with a cure for chronic Lyme disease as opposed to disproving any one antibiotic. People get sick after a tick bite. There's no disputing that!
Sounds like it's time to see a lyme doctor. This is very typical of what most people go through. I would post at the site above that SOONERMOM listed.
Oh I know not to have cortizone shots. I was very upset with the Doctor. Thanks for the website. I will try that. I appreciate all your help. Carol