Could this be Lyme?

Discussion in 'Lyme Disease Archives' started by Junegal, May 19, 2008.

  1. Junegal

    Junegal New Member

    I am at my wit's end over here and don't know what to do or where to turn. I am trying to figure out what the heck is wrong with me and how to get answers and feel better. I'll give my history and symptoms and I hope that someone might have some information or a direction for me to go in.

    1.5 years ago I got a "sinus" infection. I got them 4-5x a year, nothing unusual, or so I thought. My biggest problem was the horrid sore throat. I took antibiotics and it went away. Within days off of the antibiotics, it came right back. I went back on antibiotics. It went away. I went off antibiotics and it came right back within days. This pattern continued. I went to a second opinion ENT, then to a third. I went to an infectious disease doctor, she said that I just had a bad sinus infection and put me on two very strong antibiotics for one month. On antibiotics, I felt great. Once I went off, the throat hit with a vengence. I was tired, definitely more tired than usual, but not too exhausted to ever get out of bed. I have two young boys, the youngest will likely get an AHDH diagnosis so I just figured the exhaustion was from never stopping for a milisecond. My mind doesn't work right anymore, again, I always attributed it to the fact that I live on edge every single day with a very difficult toddler. I also went for allergy testing, all negative. I then sought a fourth ENT opinion (still thinking a sinus problem) to a highly reputable doctor in NYC one year ago, and he immediately looked at my bloodwork, listened to my story and told me "this is Epstein-Barr, this is Chronic Fatigue Syndrome"

    I then went to a CFS specialist who confirmed CFS (and Fibro?) and said my EBV and HHV6 titers were very high. I have been on Amantadine and Carnitine, with no improvement. I am now on sleeping pills as I do not sleep well. I have intermittant tingling and numbness in my hands, feet, knees and nose. I do not have any pain to speak of, except my throat. In my heart, I believe my throat flares truly are *infections* and not CFS/EBV throat pain because they ALWAYS respond to antibiotics within 24-48 hours. I've done about 17 rounds of antibiotics in the past 1.5 years. I can't live on them and I can see they are losing their effect already. I've recently started with a weird breathing wheezy thing. I am also dizzy frequently. I went to a chiropractor and when he tried to work on me I winced in pain. He said I shouldn't have pain by just touching me in the areas he did but I would literally jump off of the table. Even when my kids try to come climb to be near me I worry about them hurting me. I don't have any pain just sitting here, but when someone touches me, that elicits unusual pain.

    If you have gotten this far, THANK YOU! If this sounds remotely like Lyme and not CFS/EBV and you have a great Lyme doctor in NJ/near NYC that may be able to help me, can you please provide me with the name. I am only 36 years old and have two young children to care for and feel like a failure on a daily basis over here because I can't balance everything because I never feel good.

    Thank you all so much for your help.
  2. Junegal

    Junegal New Member

    Did you have Lyme? Did you find a doctor to help you? I emailed "Turn the Corner" and got a list of doctors but as I sit here and call, none of them take insurance. Is that the "norm" for the Lyme specialists? The fee for a consultation is $800 which seems steep. Obviously if they can help me it is worth every single penny, I just didn't realize that none of them seem to take insurance and I don't want to end up at another dead end and out a lot of money.

    Thanks so much for your help.
  3. bunnyfluff

    bunnyfluff Member

    Ppl can't post the Dr's names on these websites for fear of retribution. Some of the LLMD's have been persecuted beyond belief. It's a very political disease.

    I had the touching thing & EBV you are describing. That was lyme-realted in the end. All of it was. The funny thing is, that before you know, you just take what *they* are saying as fact. But the facts can be different than what *they* are presenting to you.

    Keep an open mind, and get an Igenex test done. You may have co-ifections like babesia or bartonella as well. Only a LLMD will know for sure.


    P.S. $800 seems high. I paid $300, and even tho the Dr is "out of network". I am reimbursed quite a bit, and the insurance company gets the cost discounted. Most will work with you. If you get a "referral" from your PCP, it helps.
  4. Junegal

    Junegal New Member

    Now I understand why people won't post the names here. That makes sense. I will go to those sites and see if I can get referrals. The problem with our insurance is that we don't have any out of network benefits at all. So whatever the cost of the doctor visit it, we have to just pay it out of our pocket. And believe me, if this is Lyme and they can help me, I will do it. I am just tired of going doctor to doctor, being treated like I am a lunatic or something. But I know I won't rest until they do a full Lyme workup on me because this weird sore throat doesn't sit right with me and 4 ENTS have done extensive testing to rule out sinus related causes, not to mention I actually recently had surgery too to make sure my sinuses were draining properly and not causing it. I just would much rather find someone in my insurance to cover the testing. If I found out I had Lyme and wasn't happy with the doctor treating me for it, then I'd pay out of pocket if I had to to get better. But right now it is just another path (among the many over the past 1.5 years) to pursue for me, but it sounds like a real possibility from everything I have read over the past few weeks.

    A friend called me a few weeks ago saying she read an article on Lyme and she said it sounded awfully like my symptoms and she was actually rooting for Lyme instead of CFS because then there might be hope to get me better. Then another friend last week was getting her hair done and read an article in a magazine on Lyme and asked the owner if she could bring the article to me, because she too said I should pursue it because it sounded like what I've been going through. So the (supportive) friends around me are also thinking along the Lyme tracks too here at this point.

    I think with Lyme/CFS/Fibro, it hits all of us differently and some of the symptoms may be the same and some may be different and that is probably why it is so hard to figure out. That is just my personal guess from what I am learning from being on these boards.

    I definintely need to pursue the Lyme full force. I know I feel much better on antibiotics and really if the doctors would allow me to just live on them, I would because they get me through the day. I hate being off antibiotics because I feel terrible and I always fear the sore throat is ready to strike at anytime. That is what makes me think there may very well be a Lyme link going on here.

    Thank you again for your replies. I really appreciate all the help I get on these boards.

  5. mollystwin

    mollystwin New Member

    I used to have insurance like you did, but changed to a PPO where i can go out of network. I spent so much money with my old insurance because there isn't anyone in the network who treated lyme, cfs or fibro.

    My new LLMD is out of network but he bills my insuance and they pay after I meet my dedudible. If you can change insurance, I would advise you to do so.

    Take care,
  6. brooklynbred

    brooklynbred New Member

    I too have been under the impression that I have CFS (which I do) without really pursuing the Lyme testing via a LLMD to the fullest. My doc (Dr S.L.) in NYC is a CFS specialist, and I fear that she has only done the basic (Quest testing) and is satisfied with that. I am not. From what I read, it could be the missing link, or at least "a missing link". So, I am looking for a NYC LLMD. Did you happen to find one?

    Thanks for your help in advanceā€¦
  7. Nanie46

    Nanie46 Moderator


    Please go to on flash discussion...sign up for free like you did on the Seeking a Doctor board....create a post asking for LLMD's in NYC.

    You will recieve a private message in return...and perhaps some other responses also.

    Hope you get the help that you need.

  8. brooklynbred

    brooklynbred New Member

    Thanks D! I've created a new topic, hope to hear back soon!

    Best, M