1st off I want to say thank you for the warm welcomes I have received. I am very familiar with the frustrations that come with dealing with doctors & insurances. My oldest is 19 (soon to be 20) and he was born with congenital heart disease.(Aortic Stenosis+) So I’m aware of the run around,back and forth to doctors etc. But what’s most upsetting about this is I can’t find any specialist around here. (Far Northeast Philadelphia) No one who seems to understand Lyme . As of now I’m waiting for Chops rheumatology clinic to call me back so we can make a appt. They are waiting for my daughters peds to fax over referrals, test results etc…which btw I was told her latest blood test came back neg for acute Lyme, even tho we had a pos result in 2012 w a month of treatment, so no farther testing needs to be done.(what?) I am really hoping this doc from Chop does more for my daughter. On top of that I’m not even sure if I made the appt in the right department. A Rheumatologist wasn’t even listed as a specialist that deals with this.
My daughters symptoms have worsened since 2012. Loud painful cracking from her joints when she moves, worse in the cold/rainy weather. There’s swelling and pain with her monthly, even tho I have been told over and over one has nothing to do with the other. Her knees have started to give out on her randomly if she’s standing for to long. Her concentration is off which is extremely frustrating for her. This leads to emotional outburst. And on top of all this…she started middle school this year.(2wks ago)
She’s dealing with a lot. Any stories, advise, or information will be truly welcomed and appreciated.
So my next thing is now what? Keep giving her Advil? Motrin?
Thank you so much for the info links. I now have a place to start. There’s a lot of contradicting information out there. It gets a bit overwhelming… I really appreciate it
Hi Momta3,
I struggled for a long time with all the conflicting information out there.
I was so overwhelmed with info that I did not pursue treatment for over 2 years. Fear kept me laying in bed suffering with a lack of hope. My thoughts are to take it slow and steady...learn everything you can without getting too overwhelmed. Info continues to unfold and I know you will do great sifting through all the info out there.
I also had troubles with my monthly. Extreme pain and excessive bleeding that would keep me homebound. I had surgery to cauterize the uterus in hopes of slowing the blood flow. The surgery helped with the blood flow, not the pain. Not sure where I read it but there is a correlation between problems with the woman’s monthly and limes disease. Once I started on antibiotic therapy long-term my monthly issues subsided greatly. In my three your journey with this disease I have found the most help from a good neurologist. My first one only wanted to deal with my symptoms. I got the name of a new neurologist for my infectious disease specialist. And this one seems to be working out a whole lot better. My infectious disease specialist believed I had limes disease but told me his hands were tied with the treatments that he could give me in the length of anabiotic’s that I could take. When my symptoms got worse, and after a year he recommended me to a neurologist. This neurologist doesn’t seem to have any problems with prescribing low-dose long-term antibiotic therapy.
Dear David,
The way that I got into see my doctor is sort of strange. My primary care and retinal specialist knew that there was something wrong with me. So they referred me to my infectious disease specialist. When I called them to make an appointment I was told have your doctors send us your files if we feel you need to be seen by us we will contact you. Needless to say, they did contact me. It was over a year before my infectious disease specialist finally referred me to the neurologist that I currently have. Again I do not believe I would’ve gotten into see my neurologist without the referral of my infectious disease specialist. The name of my infectious disease specialist is Dr. Luis Jauegui.
At this time I am afraid to give the name of my neurologist. I know that may sound crazy, but with all that I have read and learned about the CDC and the infectious disease specialist association with regards to limes disease makes me fear for his job. When I go to see my other doctors and they ask me what new medications I’m on, I tell them about the long-term low dose anabiotic therapy and they all look at me strangely and question why. It is been a long journey to get these anabiotic’s and I don’t want to lose them. Maybe in time I will grow more comfortable with the idea of sharing the name. Or maybe it’s just the paranoia from the disease. Either way I just need a bit more time before I disclose. I hope everyone understands.
Freemanellis
Thanks