Apparently I'm not "sick enough" for any treatment!

I'm about ready to give up on doctors in general!

I've already had a horribly depressing appointment with my GP. Not only does he not believe in Lyme, but he doesn't think I'm "sick enough" to get tested for anything else. In two years- he has tested my complete blood count once, and my vitamin levels once. He just prescribes arthritis medication, and forgets about me. I guess he thinks 20 year-olds taking Celebrex is normal?

So I started going to a drop-in clinic as well, to see if they would be better. I managed to get a referral to a sports medicine doctor through them (back when I was treating my symptoms individually). The referral was for shin splints, but when I mentioned all my other tendon problems, he tested me for autoimmune diseases as well. He was pretty good- but his specialty was with mechanical problems, so he couldn't help me too much.

I went back in to talk to them about my neuro issues- and if anything, they were worse than my GP! I just managed to get out that I had muscle twitches and tingling, and the guy interrupted to tell me it was stress! When I told him I was less stressed than I had been in years, he completely ignored me. Then- he went back over my files, and started critiquing my sports medicine doc's treatment of my shin splints. The drop-in clinic guy said that since my bone scan was normal, there was nothing wrong. It was like he was trying to prove I'd made  [I]that[/I] up as well! He finally agreed to test my thyroid and blood glucose, but he told me he thought it was a waste of time.

The only doctor who actually took my seriously was the sports med doctor. But he's not qualified to deal with it, and he can't refer me to anyone. (There's some rule about specialists referring to other specialists). He said I would have to go through my family doctor.

Great.

Even if my GP weren't involved with my Lyme treatment, it would be nice to have him onboard for some of the more worrisome symptoms.

It would be nice to have other things ruled out...

I was praying for my test results to come back positive, so I could get a doctor to listen to me, but I'm starting to think it won't matter. When they look at me, they "see" a healthy young girl, and so they don't even bother listening to me! And, of course, if they don't listen, then they'll never think anything is wrong, and they'll never agree to treat me- no matter what the Igenex test results say!

In a horrible way, I almost wish I were more visibly sick...at least that way I could get help. Now, I just sit here, feeling myself getting worse, and knowing what's wrong with me, and having to just let it happen.

I just needed to vent. It's been a trying day. My test results are almost a week late, and my family went on vacation on Wednesday, so I've been having to act all happy, so that they don't feel guilty about leaving me behind.

 

Unfortunately your story is a common one on this board. THAT IS~WHY many of us pay the very big bucks for a Lyme Literate Doctor. We have given up on those that take insurance. Most of us CANNOT afford those big bucks we have to pay but it is the only way we can get treatment.

Villi- the blood test I refer to is the Igenex one. I got a lyme-literate naturopath to sign off on it. A naturopath is the best I can do for lyme doctors in my area.

RottenDog- yes, thanks for the link. I got lucky, and the naturopath I am seeing is the one (yes ONE) lyme-literate doctor-type in all of western Canada. It seems most Canadians end up having to go to the states, and pay ridiculous amounts of money. Ahh! Seriously- the Canadian health care system is INCREDIBLY STUPID when it comes to Lyme!

And Razzle- I've already got myself on the waiting list for a new GP. I can't get in to see anyone until mid-September, but at least I found someone taking new patients. I'm still in a bit of shock- this guy has been my GP my whole life, my parents GP, and my grandparents GP. I would have though he'd have known me better than that- or at least had enough respect for me to listen to what I had to say!

I just was really hoping I'd find someone who could listen to me, and then give me a medical opinion/information. My family listens, but they don't know anymore than I do, and telling them everything just freaks them out or annoys them (depending on the day). And the ND is great, but although she knows all about treating Lyme, she can't really help me much with the individual symptoms (ie. eyesight, circulation issues etc.)

Plus- having all these people tell me nothing is wrong makes me start to doubt myself. Lyme has screwed up my thinking/emotions to the point where I sometimes wonder if I'm capable of making a rational decision about my illness. And then when I go to a doctor, and they tell me it's all in my head...

My parents decided to "help" met by phoning my uncle- an internal medicine specialist in New York. He proceeded to lecture us all on the doctors who "over treat" and give "unnecessary" and "overly long" Lyme treatments. He thought we were idiots just for paying for the Igenex test.

Two months ago, I was upset that I wouldn't be able to backpack this summer. A month later, I came home and didn't recognize the house I've lived in for 6 years. Now- I'm terrified I'll have to drop out of school. And I just literally don't know what to do. And I'm scared to talk to my family and friends, because it'll just scare them, and make them uncomfortable.

I would apologize for the second rant, but I think I'll just invite you all to share your rants, and then we'll be even!
And sorry for spelling mistakes- both the brain and the eyes are a little off right now. But I think I got them all....

Hi ticker,

I've had Lyme disease for two years- but my symptoms have gotten much worse in the last 6 months or so. As for the symptoms lists...let's just say that when I say my LL ND, she told me "you don't get extra points for more checkmarks!" (she was joking, of course).

So I have a knowledgeable ND, but I'm still looking for an MD willing to work with her, and prescribe the antibiotics she recommends. I have Dr, B's guidelines (my ND is an ILADs member, so her treatment plan is good too), but I haven't gotten that far with a doc yet.

Still waiting on my Igenex results...they were supposed to be here Tuesday! Darn that Canada Post and it's snail mail....

Nicky D,

While you are waiting for a doc to help you, you might want to check into some alternate treatment.  I just started Buhner's protocol.  You can read about his protocol in his book Healing Lyme.  I did Zhang's for 6 months before this but started to backslide the last 2 months I was on it.  I herxed on my 5th day and have had milder herxes about every 28-30 days since.  I have to agree that even with a pos test result most doc's will still tell you that you don't have LD, a false positive!  My son even had a bull's eye rash that the ER doc said "it's not lyme".   KO