**I just posted this in General but was told to move it here for more possible responses...**
I'm new to this whole lyme thing. I've been sick for quite a while but just diagnosed by an LLMD last week. Right now, I'm overwhelmed and not sure really where to turn. I have a few questions if you don't mind...
The infectious disease doctor I saw a few months ago said repeatedly that I don't have Lyme. This was before the positive test results, but I've heard they don't accept Igenex results anyways so I don't want to go back. What are the chances that my Igenex results are a false positive? I would appreciate it if you all could look at my results.
Can someone explain why it is that ID docs hate Igenex? Actually, the ID doc even refused to retest my blood since the only band that showed up on my previous non-Igenex test was 41 -- said it was a waste of time and money.
He also said my symptoms are neurological and to go back to my neuro. My neuro says my problems aren't neurologically based and to see an ID doc. My neuro accepts these + results, but he won't treat it -- says it's out of his league and wants me to see an infectious disease doc -- he referred me to the one I'd already seen. PCP says the same thing. I want to scream!
So how does this illness ever get treated -- particularly without going completely broke? The LLMD would like to put me on IV meds for my neurological problems, but no one wants to work in tandem with her to get it paid through insurance. Also, do insurance companies fight you over paying for oral antibiotics?
I'm sorry for all the questions but I'm phenomenally frustrated. I just want to feel better, but I'm spinning my wheels and getting no where. And I keep doubting whether I even have this disease.
Thanks for your help, Jennie
Posts: 45 | From New Jersey | Registered: Sep 2008
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Welcome to the board...though sorry it's for this horrible disease. I agree with Lymetoo...your WB is pretty clear, IMO.
I am, by far, not a veteran here, only diagnosed 6 months ago and still very much struggling. The frustration with doctors and treatment is still fresh with me; we can all relate. It's a political/medical nightmare, to be so sick and caught up in the IDSA/political mess. There is no other way to say it, IMO - they are flat wrong when it comes to diagnosis and treatment of this disease. They just need to live in our bodies awhile and then they'd understand.
What I will say is, yes, it's terribly expensive. I have found that even if I can't get my doc visits covered by insurance, my insurance will cover the rx's that are prescribed me, which is a HUGE help. Mind you, the cost of the supplements is outrageous and my insurance does not cover that.
I'm sure others will come along to give their input and advice. Besides online, I have found many books to be helpful and you'll find those in the newbie links. If you want to read up on the political side of things (in addition to Lyme stuff) Cure Unknown is a very interesting read.
Finally, make sure you were tested for co-infections...Lyme is terrible, but the 3 co-infections I have (and now being tested for a 4th) make me even sicker and treatment even more complicated and lengthy. You really need to know ALL of the tick-borne diseases with which you might be infected as that will really dictate the course of proper treatment. Good luck to you. TS
Posts: 566 | From West Coast | Registered: May 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Jenie,
Welcome! I am so sorry you have been sucked into the unwonderful lymie world, ... but
There are so many WONDERFUL helpful people here to help guide through the right doors.
No doubt you have lyme. Even if your tests were negative, most LLMD's treat clinical symptoms. So, put those others out of your mind and move forward.
The reality of most LLMD's treatment is that they dont take insurance for visits. Mine only does some lab work thru my insurance. It is ridiculous, but what other choices do we have?
I know you are frustrated at the moment, but do read and educate yourself with the information on this site. Education is POWER.
Hopefully you can start your abx very soon. Good luck and keep us posted,
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
Thanks for all your supportive notes. This is definitely the single most frustrating experience of my life.
This current insurance/id doc stuff is beyond painful. But I also can't stop emotionally flogging myself for not getting treatment earlier. In July '06 I had the severe headache/stiff neck/fatigue thing and was diagnosed by a doctor with tension (it all came on the day after my grandmother died). And what I can't stop beating myself up over is that I didn't put 2 and 2 together when I got a rash on my calf a few days later. I'm the first one who would drag my kids or hubby off to the doctor if something like that showed up on one of their legs but me, no, it's just a harmless bug bite that just so happens to be big, hot, and not itchy -- not to mention the spider veins that surfaced in it later.
So I'm feeling kind of stupid and I'm having a hard time not being able to forgive myself for that mistake. My family has been through a lot with me being ill and now the potential financial burden makes me feel even worse.
Even with the early symptoms and a coinciding strange rash, I still have a hard time with the diagnosis -- I guess I just don't want it to be true. And the ID docs are making me doubt myself -- which is quite easy because my brain is shot. Sounds like the concensus here is that my test results are positive -- acknowledge and move on. I'm going to try.
TS -- I was tested for co-infections and my doctor said I was positive for Babesiosis and that we need to treat that too. Honestly, the results printout she gave me for that test are pretty confusing to read. However, I definitely feel I have the symptoms of it.
I have a question about antibiotics but I'll post that separately tomorrow.
Thanks again for all your responses. It's nice to know I'm not alone.
Jennie
Posts: 45 | From New Jersey | Registered: Sep 2008
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posted
having lyme really sucks, its one of the worst things thats ever happened to me but this place is great and has some really nice people that will help you because they're kind. I don't know what i would have done with out this place.
posted
Dont beat yourself up. Everyone here has a similiar story. The what ifs will drive you crazy.
The good thing is that its diagnosed, you know what it is, and you can get treatment.
Its a long battle, made longer by the misdiagnosing of most drs, and the constant fights with insurance companies for coverage.
As you've already learned, there are two schools of though when it comes to lyme...those that have it and the LLMDs that believe in it; and the standard hmo drs and people who think lyme is just hooey and a few pills for a few days will cure it all. Worst yet are the drs who label you as a head case, even after you've had tests to prove it.
Just keep the main goal in mind...your health comes first, and everything else is secondary...
Good luck!
Posts: 514 | From . | Registered: Apr 2008
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