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I am undiagnosed but suspect I have at least Lyme and Babesia. I based my decision on an LLMD in large part due to the fact that his nurse was so helpful on the phone. She spoke with me for at least half an hour, and was just so full of information (including the Babesia possibility). The first appointment is four hours, so I am assuming it will be very thorough. It sounds like I will be put on a strict diet and given a lot of supplements in addition to meds. The only thing is that he doesn't do IV.
I feel like I should be prepared with a list of questions but am not coming up with much. Do you guys have suggestions?
Some info on my symptoms:
I missed a few days of work in September, October and November due to fatigue. It fell the week before my period each month. I suspected anemia and started taking iron. Things seemed to improve.
In February I started having severe fatigue, lightheadedness and breathlessness. An intense urge to lie down. Symptoms got worse after meals. Some brainfog also. I was unable to work in March & April. I was very weak and relied on my husband to take care of me (prepare food, drive me to appointments). After a while, I had a positive tilt table test and received a diagnosis of neurally mediated hypotension. I started on beta blockers and felt much better. I never got back to 100% but maybe 80%.
About three weeks ago the fatigue started to return. I was unable to do lab work (I'm a graduate student) but was able to do desk work for about two weeks.
This past week I have been much worse. Fatigue, sleepiness, brainfog, air hunger. I'm leaning on the walls/furniture when I walk. I can walk straight if I put effort into it but it's easier not to. I have joint aches and pain from pressure (my own weight, my cat's weight) but not all the time. One episode of blurred vision, one episode of smelling something that wasn't there. Also body temperature issues (I'm always either too hot or too cold).
In spring my PCP had suggested Lyme and did an ELISA, so I had read a little about Lyme. When my symptoms got bad, I started searching for an LLMD. This one had only one appointment open in the next month, and it was for tomorrow! So I took it.
The biggest question in my mind is, assuming that I Herx when I start treatment, will it get so bad that I can't take care of myself? My husband and I separated in the period in between my first episode & this one! I can go stay with my parents if necessary and am wondering if I should do that before starting meds.
I'm also concerned about costs but who isn't? I'm not sure whether my boss will keep paying me through all this. I don't have much money in my hands now but when the divorce goes through I should get a chunk. I was planning to pay off my student loans with it but oh well.
Thanks so much. This forum has been an amazing resource.
Posts: 25 | From PA | Registered: Sep 2011
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