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We live in the Dallas, TX area. I was just diagnosed with Lyme's as well as my 14 year old daughter. We both also have Bartonella.
I also have a 3 year old son and our LLMD feels he has Lyme's as well but wants him to see a Pedi LLMD. I called one and the wait was over a year. He is having spells where he tightens his fist and shakes. He has at least 1-2 fevers per month and is always grumpy and miserable.
I'm just so afraid after reading so much now that if we wait a year to see a Pedi doc he might develop long term neuro problems and it could change his personality. Any help or ideas would be so much appreciated!! Thank you all so much.
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Welcome to Lymenet! You should put 'TX' in your title so people will know where you are looking. Click on the pencil and paper icon, make your addition then click "Edit post".
Can you tell me who your LLMD in Dallas is? Or can you PM me with the information?
I don't know if LD could be the culprit or not, because I don't remember having any classic rashes. I remember getting bit by a tick, which happens fairly common out in the country where I live, but don't remember if it was last year or the year before. It just started with getting pneumonia last April and then coming down with mono (Epstein-Barr) two weeks later (at age 45). I never really got back to myself and then I came down with mono again in October. This time, I had other really specific symptoms that haven't gone away. The specialists have ruled out a lot of things, including sleep apnea. Though, I need anywhere from 10-12 hrs of sleep a night. I also have some swollen lymph nodes that they will recheck with a CT scan in March. My dr is now sending me to a rheumatologist to rule out Lupus and RA. I get out of breath with the slightest of exertion, though I used to be very active. The pulmonologist told me I was depressed and out of shape. I'm still losing weight....46 lbs since April. I was overweight to begin with but don't have that much more that I can lose before it begins to be a problem. My husband agrees that I am not depressed, but the dr saw I had post-partum depression when my twins were born 12 weeks prematurely 10 years ago. So, she was quick to label me. The lack of appetite came on as quickly as the pneumonia and mono came on. We cancelled our vacation because of my health. I'm frustrated and angry over my health, but not depressed. I feel better now that the mono is gone and I'm not acutely ill, but I'm still ill and still not myself. And, I've gotten an asymptotic UTI. I've only had two UTI's in my lifetime and they were related to being pregnant. So, it's like my immune system is just shot down. Anyway, I wanted to find someone who is knowledgeable and could order the right test and tell me if it is or isn't LD. If it isn't, then I will keep looking for answers until I feel better. If it is, then at least I will know how to fix it and feel better. I just don't want to be told it is in my head and that I am lazy....that is so degrading to a person who gives her all to work and family. Maybe the dr didn't say that in so many words, but that's how I felt when I walked out of there. Also, my insurance is part of a big HMO. So if you don't fit their cookie-cutter mold, they really don't know where to put you. I need someone who can think outside the box and not just pop a happy pill into me and call it good.
Posts: 4 | From Central Texas | Registered: Jan 2014
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2plustwins- Welcome to Lymenet! You've come to the right place for help.
I was re-reading postings and came across yours attached to an existing one. Usually, people will write new ones in order for more people to see them and respond.
Your symptoms sound like Lyme to me and you need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease and its complex treatment. "It's all in your head!" is a typical "diagnosis" when the doctors can't figure out what is going on!
Unfortunately, you wrote your insurance is through an HMO and most Lyme doctors do not take insurance and are not in HMO networks!
FYI - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
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