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I am so beyond frustrated right now. I have been dealing with health problems for nearly two years now and finally I might have an answer. My primary care doctor has diagnosed me with Lyme Disease after both ELISA and Western Blot test came back positive. He immediately started me on Doxy for 21 days and refereed me to infections disease.

Problem is infection disease will still not see me. They outright gold me that if after 21 days on Doxy I still have symptoms AND still text positive on the Western Blot, they will re-evaluate my case.

I am having sever symptoms including fatigue, joint pain and swelling, horrible headaches, I've developed a nerve palsy in one of my eyes that is causing double vision, and I am starting to slur my words and having problems with short term memory and word blocking. The last time I had a tick on me was last Spring, so I have concluded on my own that I am in the last stage of the disease and at the very least just want to talk to someone that could answer my questions.

I am going to try and get an appointment with my primary care doctor again to see what his take on the situation is. He has also been frustrated with ID refusing to see me when he first thought I had Lyme Disease, so maybe he will be of some help.

Any advice or knowledge on how I should proceed is greatly appreciated!
Good Morning,

Great that your primary diagnosed lyme. It's unusual for a GP to be informed or sympathetic about lyme disease. However, you really need to see a lyme specialist - an LLMD - lyme literate medical doctor. That infectious disease doc is not going to be able to help you, especially if he/she thinks 21 days of Doxy is going to cure lyme! Also, it's important not to wait around for further evaluations and such. The bacterium replicates about every 30 days so it's important to stay on top of the treatment. While you are looking for an LLMD maybe your primary could prescribe more doxy.

I understand your frustration. You just need to look in the right direction for help. I wish you all the best with this.

Tess
My GP is amazing, we absolutely love him.

He thought it was Lyme back in June. The Elisa text came back positive, but then my first western blot was negative. After doing more testing for Autoimmune stuff, MS, and RA, he went back to my Elisa text and said that I tested positive on every line, whatever that means, and that he had a hard time believing that with all my symptoms that I didn't have Lyme.

So he did some research and found out that because I was on two pretty strong antibiotics for my chronic sinusitis, that it could have been a false negative, so he waited till I was off all the antibiotics for a week or so and re-tested the western blot and it came back positive.

I met with him today and he is setting me up to see a neurologist to do a spinal tap to find out if the infection as spread to my brain or nervous system. If it has he said they'd set me up with a pic line and I'd have an antibiotic pump to administer meds 24/7 for as long as it takes to get it into remission.

From everything I've read it sounds like he is on the right path and he is not brushing me off and being a great advocate.

Is this treatment online with the treatment I should be receiving. If my GP can treat me, I'd rather stay with him as he is 30 minutes away and everything is covered under my insurance.

Thoughts?
Hi, Tayook! It IS a rarity to find a GP who is willing to help you with Lyme! I wanted to let you know, that I am one of those unfortunates, who have had neurologists order spinal taps for me. 3 different times! The first one diagnosed me with seizure disorder, & put me on 2 different meds, which I could not tolerate. The second time, was in an ER, where an intern did it, convinced that I had MS. He tried 3 times, but kept hitting my R sciatic nerve! He couldn't get any fluid, & blamed me for being "noncompliant" by jumping every time he tried to get spinal fluid. Duh... They discharged me with a diagnosis of depression & somatotization d/o! The third time was also in an ER, after having a seizure & severe migraine. The doc thought I may have menigitis, due to my severe headache & high sed. rate, so a resident did a "quick tap," & found nothing. I ended up going home having a more severe headache, as he put me directly into a wheelchair, to wait for results, instead of letting me lie flat for a while afterward! This time I went home with a diagnosis chronic migraines...again. (Dx w/migraines @ 19 yrs old.) Oh, yeah, I was sent to a Chief of Neurology, by my neuro-ophalmologist (who thought that I had some underlying cause of my double vision, bihespherical brain slowing, & white lesion in my deep temporal lobe.) The Neurologist had his intern do some bloodwork, & a urinalysis to see if I had protein in my urine. Turns out that the neuro was called away, & the intern didn't √ for protein. He had me admitted to to abuse clinic, because he found "methemphetamines" in my urine. This happens when your on an SSRI antipressant w/a barbiturate. I was on Fioricet for migraines, and an antidepressant. He took me off all my meds, had me watched, & started me on high doses of Prednisone for headaches. (A big no no for someone with Lyme!) Anyhoo...the neurologist finally came to visit me in the "drug watch room," & totally went off on the intern. He made him give me a formal apolgy in front of the whole neurology group! I was discharged, back on all my meds, & told that I had M.S., & needed to come back for treatments for such. I never went back, of course. I knew I didn't have it. So, needless to say, to this day, I am suffering sciatica pain, & chronic spinal spasms and pain. As was already told you, a spinal tap will not show up that you have Lyme. I'm not writing this to scare you, I'm just concerned for you, as I'd hate to see you go through an unecessary procedure, that is not only painful, but can have lasting damaging effects, as well as it usually is not used as a diagnostic tool for Lyme. I wish you well in your search answers, and hope you can find a good LLMD in your area. I'll be started on low doses of antibiotics soon, & expect to be on them for a long time. I have late stage/chronic Lyme. God Bless, & you will be in my prayers.

Dee.
[COLOR="Teal"]Spinal taps and Lyme do not mix. Avoid them at all cost. Majority of us that have lyme have it in every inch of our bodies. So you can be for certain it is in your brain.

I did not know not to have one, had it done and it knocked me down for months. Made me sicker on top of my already sick body.


find a LLMD and get the proper treatment.

Hope you feel better soon!

Jodie[/COLOR]





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