I know I am not imagining my symptoms like a neuro earlier today suggested. I live in Tampa Fl. In August 2006 I went to Long Island to visit friends and family. Sept 2006, Labor Day weekend to be exact, I developed the classic bullseye rash on my upper inner thigh. It did not itch or cause me pain, so I did nothing about it. A few weeks later I felt awful. Went to the general doctor, they tell me anxiety related etc. They take blood because I know this is more than mild anxiety. I tell them test me for Lymes, they laugh at me - after all this is Florida. No Lymes in Florida, right? They tell me stay off the internet. I tell them I was in NY and had a bullseye rash weeks prior. They say it was probably a bug bite.
Elisa test comes back possible Lymes. Western Blot comes back positive for P23. General doc shocked and says he considers it positive but low levels and puts me on 14 days Doxycycline. I feel better! Much better! I think its gone.
Fast forward to last month. My two small kids got sick with some virus. I got it too but they recovered quickly and I did not. I was wondering why do i feel so bad? Then symptoms start mimicking everything I had back in 2006 and I realize the Lymes is back. I get back online and realize it never left me.
Hubby makes me a neuro appt for this morning, after they tell him they do treat Lymes. He also calls a LLMD here in Tampa, luckily we have one here. LLMD sent me some paperwork I need to fill out first. So I see the neuro today who looks at my old Lymes blood test results, done by LabCorp, and first tells me it looks like I did not test positive for Lymes...but wait - she doesn't know much about Lymes! Can you believe this? She refers me to an infectious disease specialist and tells me its probably anxiety but see specialist to ease my mind anyway. I tell her I tested positive 3 weeks after rash for this "P23" and she dismisses it. I then call the specialist wshe referred me to and they do not even treat Lymes. So i filled out the LLMD paperwork and drove it to the office today in hopes of getting an appt - but they told me that the doctor will look it over and call me if he feels I may have Lymes. I am praying for a call.
I read through some threads here and see that P23 might be an early marker of Lymes. I sure hope so, because I can't live like this much longer. I have a feeling I have coinfections and everything. I have a colonoscopy scheduled in two weeks because I have had abdominal pain for the past two months on and off.
How long should I wait to see if the LLMD will call me?
I feel the same way you did. This board literally saved my life. I was treated with 4 weeks of doxy and told I was fine. They after a major move to Florida all my symptoms came back and more so than before.
I also filled out the paperwork from the doctor in Tampa but it took him like a week to call me for an appt. In the meantime I decided to find one in the place I moved from and he called me immediately when I faxed over all my issues and information. Call them again and tell them you want to see where they are with it. After all it is your life and you need to be persistant.
I too tried an infectious doctor that said they treated for lyme. They said that even though I tested positive and had all the symptoms that they did not fit inside the box and it could be other things. What damn box!! I am seeing an LLMD and have been since last June.
Good luck to you,
Oh, I moved back to MD since then but I am the first documented case of lyme in the county I was living in down there. The doctor knew nothing about it when I went to see him and had to get a book out. He did not want to test me, said I would always be positive but funn thing is I had more bands present than before.
Thank you for your response! I hate this waiting game. I feel like everything I have felt for the past year makes sense now. I am only 39 years old and thought I am way too young to be feeling like this. This is not in my head! These are real symptoms - and the fact that I had the rash and no one cared boggles my mind. I just hope the MD calls me soon. i wonder if there is a chance he won't call me at all?
I am 36 and feel the same. I actually use to doubt myself because of the docs and think it was in my head.
If you know that you are sick (and had the rash) I would call him. You do not have to wait. At least they can tell you what is going on, if he has even loooked at it yet. I did a lot of research on him and he seems like a good doc and even has some programs to help the uninsured.
Are you sure that this doctor is a Lyme Literate MD? In any case, I sent in my paper work and it did take about a week for my doctor to contact me to set up an appointment. Depending on how "busy" that particular LLMD is, it may take a while for him to review your case and get you in. I would say if you haven't heard anything in 3 business days, to call the office to find out if he's reviewed your case yet.
For all the negatives I hear about my doctor, I got in after only a month's wait. He sat there and read my list of symptoms and time line the first visit. He said "maybe it's Lyme, maybe it's not", but was willing to start me on abx treatment right away. He also doesn't tell me "this is the way it is.. this is the way you're going to be treated". He has no problem at all with my input.
Luckily my husband ran into a doctor yesterday at a walk in clinic of all places and told him my story. The dpctor had me come in last night, took my blood and sent it off to be tested for Lymes. Only issue is they use Quest, which I see is not great at testing for Lyme. He did give me a 30 day script for Doxy, based on my past history and symptoms. I am happy about that. Maybe its psychosomatic, but I have been taking them only a day and feel somewhat better. I do not (knock on wood) have debilitating symptoms. Just bothersome. In a bizarre twist of things, my sister on Long Island has been feeling terrible, much as I have been feeling - and thought it was her hormones. She had tested + years back for Lymes as well. She had no idea it could re-activate. She asked to be tested for Lymes again after i told her it sounded like a recurrence. She let me know yesterday it was POSITIVE.
I just don't get how something so serious is not taken as seious in the medical community?
Thanks for the welcome and thank you for taking the time out to post to me about all of this. I have seen your posts around this board and think you are somewhat of an angel! Seriously.
I did not know the info about taking Doxy, so that alone is going to be a huge lifesaver. I took it this morning after cereal with milk. I am on 100mg 2x a day. I do feel better already, and have read up on the Herx so am prepared.
I have tried to let me sister know ths severity of this disease and emailed her this board as well as some other Lyme info and the fact she should see an LLMD. Its in her hands now. I don't think others realize how bad this thing can be. I love her, of course, and hope she follows through.
It shocks me that Lymes is not taken seriously in many areas, like Florida. With everyting I have read on it, again, I am shocked. Aside from my sister, I also know of a 13 year old boy in my neighborhood who contracted a serious case of Lymes last summer while vacationing in New Hampshire. He had to be hospitalized. Scary stuff.
Thank you for the suggestion on documenting my symtpoms. Another great idea I would not thought of.
Thank you all for your support and help, it means more than you know.
There is a lot of Lyme disease in FL. I know several people there who have it. It is terrible that the majority of those in the medical profession are ignorant of the seriousness and prevalence of tick-borne illnesses.
200 mg of Doxy daily is not strong enough for Lyme. I believe the recommended dose is 300-600 mg daily. It is very important to get the proper treatment.
Hi I was wondering if any one new a good llmd on Long Island. I am not sure if I have lyme -- test came back 0.15 -- so my doctor said that is in normal range and left it at that. I am so dizzy, my left eye is twitching, I have sharp shooting head aches, my legs feel week -- I'm a mess. I just need some one knowledgable to discuss this with. I took an MRI today -- have to wait and see about that. Any information will be helpful. Thank you!