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tired of being told nothing is wrong with me!!!

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Posted 2/21/2011 2:57 PM (GMT 0)
I posted on another thread about my doctor's appt. on Friday(with my GP). All my tests came back normal except for the nodule in my thyroid but he doesn't think that is anything to worry about (I see an endo the end of March)

Anyhow I was told that if I ate better and exercised and lost some weight I'd feel better. HELLO???!?!?! I can barely function most days. He released me to go back to work tonight but the way I feel I don't know how I'm going to do it.

I am working on trying to find an LLMD that takes my insurance and trying to come up with some money to get tested at Igenex. But how do I go about getting the blood drawn without a script?

I just don't know what to do and where to turn.
Posted 2/21/2011 3:17 PM (GMT 0)
From one jeannie to another, hang in there. Be persistent. You know your body. I was told for 3 years there was nothing wrong with me. I was told anxiety, menopause, stress, you name it. Luckily I found an endocrinologist that truly believed me. Have you had a western blot? Do you have a copy and have posted the results here? I used Igenex and sent my blood myself with the hope of getting insurance company approval for IV but it failed. But anyway, I went to my GP just for a blood draw. You can email or call Igenex and get the kit yourself. Bring it to the dr. They will take the blood, follow the instructions for the blood and then give to you to mail to Igenex yourself by overnight mail (just not on a friday). Only problem is, Igenex will send the results to the doctor who gives you script. In my case, this was my infectious disease dr. who was an idiot but cooperative. I begged for a script and he gave it to me. MOST doctors know nothing about lyme. Once you truly believe that and realize you are gonna have to do this by yourself, the better off you will be. Most LLMDs do not take insurance but mine is reasonable and I submit to my insurance and they pay the outofnetwork amount which isn't too bad. Best of luck to you. Keep us informed.
Posted 2/21/2011 7:15 PM (GMT 0)
Thank you! Sometimes I feel like I'm loosing my mind and am beginning to think it is all in my head as I've been told. I only had the Elisa test done and that was negative (of course). My doctor refuses to go further because of the negative. I'd love to get the Ignex testing but can't afford it right now. Just venting really. Just so sick of being told all my tests are negative so there must be nothing wrong with me.
Posted 2/21/2011 10:03 PM (GMT 0)
It is infuriating I know. Beg him for a script for a western blot! It's no skin off his back, it's your body! I actually had significant banding with regular lab corp. so it's not always necessary to pay for Igenex.
Posted 2/22/2011 3:22 PM (GMT 0)
Did they test you for any viruses? I would switch PC's even to find one who will test for anything and everything. That was my *thing*. I told them CLEARLY something was wrong as this wasn't *ME* and if it isn't Lyme, they better darn well rule out everything else.

I find sometimes you really have to stand up for yoursef to get what you need. Many Dr's think they are Gods and can't think outside the box. I have been downright b*tchy to Dr's.

I have been offered antidepressants, sleeping pills, etc. Told I needed to eat right and sleep more, exercise...then I was exercising too much( I am a vegan, and run marathons but I should eat better and exercise more...)I refused such pills and said Why would I want to MASK my symptoms? Why not figure out what is wrong and FIX IT?

That baffles Dr's who will give out rx's for narcotics like candy but GAWD forbid you want an antiviral/antibiotic...uness of course you have acne. Then you can go on doxy for years...grrr...
Posted 2/22/2011 6:07 PM (GMT 0)
IMO- you are soooo right RR!! I become someone completely different when I go in to see any doc anymore!! Why not???

We pay them!!! We actually hire them to do a job!! Think of it this way - if I hired an Electrician to fix a light switch that wasn't working, and he got paid for his work, but then the light switch still won't work - what would you do? The smart thing to do is to call that Electrician back to your home to do the job he was paid to do!!!! Why don't we treat doctors the same way???

Okay.... blush.... stepping down from the soap box now. devil
Posted 2/23/2011 3:52 AM (GMT 0)
I am suffering greatly right now from Lyme and co-infections. I am very depressed. Running out of money and still need the IV antibiotics to feel well. Is there anyone who knows of any financial aid out there? My problem is that my husband makes a good living and I am tied to his income which looks good but with all we have spent on my treatment and the economy, we are in really bad shape right now. I am just at a loss and do not know where to turn. Any advice would be greatful. I was diagnosed three years ago w/ lyme and a couple of the co-infections, had a seizure and could not walk. Went to tons of drs with all my strange symptoms and they would just say that it was in my head. They made me feel like a hypochondriac and most were just patronizing, condescending, arrogant and plain rude. I was on an emotional roller coaster until I found a lyme literate dr here in California. I thank him for saving my life and giving me the ability to walk again. Unfortunately, I have had another "flare up" and I am scared! Thank you for listening.

Wishing the best to all of you!
Posted 2/24/2011 6:21 PM (GMT 0)
My advice push for a BLOT. My son's Elisha and my Elisha Negative. Blot for son CDC positive.. I saved my kids life BTW. My blot just band 23.. but band 23 is lyme specefic.
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