I got my bloodwork for my upcoming appointment with Dr. Fein yesterday. I read everything that's written on this board but when I went there and the office was packed to the gills, and I was the only one there who lives in the area, it really hit home how few people are treating this. Ticker, I will be eternally grateful that you gave me the name of a doctor that's practically in my backyard. (Just luck that I live here, I know, but who knows how long it would have taken me to find her myself.)
I am feeling sorry for myself right now because I feel lousy again. We are having a huge catered party at my house on Sunday and last night I was working on cleaning/straightening/decorating and I literally slumped to the floor and couldn't get up. But yesterday there was a mom at the doctor's with her young daughter, and it was her 4 year old getting bloodwork. So right now I am relieved that it's me and not my kids.
Sarah, I sympathize so much with your story and I hope your husband is able to get treatment soon. We inherited a small amount of money last year when my DH's husband passed away. That's keeping us afloat right now. If this had happened to me a couple of years ago I would have gone bankrupt already or given up on treatment.
I am in some stages of seeing 4 doctors right now: a kind but clueless GP, a neurologist that seems the most knowledgeable of the non LLMDs I've seen but won't treat me for Lyme (I didn't think it was political but who knows, the neurology board just published a very troublesome guideline a week or so ago), an ID doctor that is useless and Dr. Fein, who I am pinning all my hopes on. If someone explained it to me before I started this journey I would have thought they were insane. (I knew a few people with Lyme but they all had bulls-eye rashes and ticks and were treated immediately.)
Someone needs to do a high profile expose on this subject.
Thank you for your caring words. It is unbeleivable what we have to go through to get treatment. I think that my husband thought that I was exaggerating about the whole thing and just wanted my son and I to see 2 of the best LLMD's in the country. This was not the case, my son's LLMD is the only pediatric LLMD, and the closest reg. LLMD we have is in Louisiana and has a 4-5 month waiting list, because the LLMD's left Texas because of threats. Now that my husband has been diagnosed he is realizing that I wasn't wasting out money going to CT, we had no other choice.
I am sorry that you have Lyme, but so glad that you live close to LLMD's that can treat you, and that you have the ablilty to handle the large upfront fees that come with treating this disease. My husbands grandfather died a few years ago and left his estate to my MIL (he owned a vinyard in Naugatuck) we got a vintage bottle of wine out of it. She spends this money on trips, cruises, plastic surgery, fake hair, spa treatments, etc. And doesn't help us out, she won't even go to the grocery store for me. Maybe once she finds out that her son has Lyme too, that will change, but I don't think he will tell her, because he does not want anyone to know. I think it will only make her hate me worse, she already feels I ruined his life by being sick and putting him in debt, now if she thinks I made her son sick it will be worse. i hope that Dr. F. turns out ot be an excellent LLMD for you, and that you get better, this board is such a godsend for everyone. Hopefully someday soon us Lymies will be treated properly instead of everyone trying to sweep us under the rug. Sarah
Hi Writeart. Yes, you are lucky to have a good doctor nearby! Many of us have to travel out of state to see one.
You really have to take it easy and delegate things. I know it is hard, but you will be the one who pays when you over-do. Have others clean the house so you can enjoy your party.
I once heard an analogy that people who have Lyme have $1.00 to spend on energy. If it takes 75 cents of that energy to mop the floor, there is not much left. You need to use your energy sparingly and wisely.