Ricobord, where is your forum? Is it on this site. I will be happy to join and I will look to see if it is on this website. I went the MS route, beacuse the meds are being recommended. Even the doctor is puzzled of the spinal results with no brain lessions and one isolated transverse myelitis spot on my spine. She says if anything it is a pre-pre MS. Is there a lab I should request. My insurance covers Lab Quest, but at this point I am ready to pay it my self. I have spent all my money in co-pays and deductibles anyhow. I live in Gulf Breeze, Florida the nearest larger city is Pensacola,FL and I can tell you the minute I was biten. I had flu like symtoms the days following the admission. My regular doctor checked my head and gave me shapoos for parasites and a cream for nights she said she could not see any bumps then. She did a Lyme test but it was negative then too. This was a year ago. I had the first episode of numbness November 6, 2011 and it lasted until 1/28/2012. It went away and I thought it was shoe related. Then August 19, 2012 it started again with no relieve. I started a steroid infusion today to get rid of the proteins and reduce the swelling on my spine it will go on for three day. I have not started the MS meds. My neuro is very understanding and she will do anything to help me. May I share your reply on the MS forum with her?
I didn't see an earlier post from you or Ricobord's response, but if you have Lyme, your symptoms may get worse from taking steroids.
Steroids are meant to suppress your immune system, which makes sense in an illness like MS that is 'auto-immune', meaning that your immune system turns on your body and starts doing damage.
Lyme is NOT an auto-immune disease, but is instead a bacterial infection. Your immune system needs to be up and running to hold back the infection.
If your doc is open to the idea that you have Lyme, then I do not understand why the doc is treating you with steroids. Your symptoms may get worse after the steroid treatment, just fair warning.
I am not medically trained, nor is anyone else here that I am aware of, but please be cautious and ask your doc about this aspect.
You can find a Lyme specialist by emailing to
contact [at] ILADS [dot] org
and tell them the area where you live (as you did above in your post. ILADS (International Lyme and Associated Disease Society) is the main voluntary group for MDs who think progressive thoughts about Lyme.
I also just google/searched for
and got lots of links to websites that could lead you to an LLMD.
Hi. Welcome to the Lyme forum! Feel free to let us know your symptoms and history. I know you're experiencing some MS like symptoms and your doc thinks you have an early case of MS. But because you really don't fit the diagnostic criteria, it is best to see an LLMD (Lyme Literate Medical Doctor) first to get checked out for Lyme, especially since you had a tick bite just before you got sick.
Do you know how to send a new private message (PM) to Mojogal for the names of some LLMDs? Just touch or click on her ID above and then select "Send a message."
My doctor tested me for Lyme, I tested negative. Then she did two MRIs one with and one with out contrast including the brain. I have no brain lessions, I do have one spot of Transvere Myelitis. Then I had a spinal tab all marker came back negative except for a 7% of a protein found in MS. The problem is this particular protein has to have an equal number in the blood and spinal fluid. In my case I have the protein only in my spinal fluid. The odd puzzle is because 7% is relatively serve alone, but I have no brain lessions. This is why she went the steriod route. She is not thinking Lyme at all. During this process the infamous bumps on my head returned. I am the one who asked on the ms forum if there are False Lyme test results. Ricobord saw my post and said yes to my question. I met with both my doctors today. They are thinking it may still be pre ms, but I may have a combination and agreed to write the order for me to send the test to the suggested to Ricobord. We were too late to stop the steriod treatment. I wish I had written this before, but they are ready to admit me stat if my condition worsens any. Jackie the protein name is escaping me know, but it is something obligbands. I have it written, but not in this room. After we reviewed all the symptoms for Lyme they both agree to follow through with the test in a weeks time to eliminate the steroid from the body for a real answer. I will update you soon. Ricobord, I will post all the symptoms of Lyme I found on this site I never told my doctor because I assumed they were part of the change of life. I am tired now and ready to get some sleep. It was a long day, but a productive one. Thank you for your help, I do not feel so lost now. Good night.
I hope the IgeneX testing is helpful. I am really glad your doctor is willing to work with you on this! Many docs are not.
Before I knew I had Lyme, I had several symptoms that were attributed by either me or my PCP to aging. They included wild hormone swings, severe PMS, ovarian cysts, tinnitus, blurry vision, floaters, light sensitivity, brain fog and general fatigue. Now that my Lyme is mostly gone, of these symptoms, I only have fatigue left. My hormones have evened out and are essentially normal for my age, now. I highly doubt I'll get anymore of the awful cysts (which were a secondary problem from the hormones).
Have you seen the Burrascano symptom check list? I was really surprised when I found it. I had no idea that so many different symptoms could all be related. You can find it on the ILADS website under About Lyme and Treatment Guidelines. Look for Dr. Burrascano's Advanced Topics document. It is several pages down in the document.
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