New...Help?

[Kaydey]

I have been ill for the past 12 yrs. Last week I was talking to a friend who had just been diagnosed with Late Stage Lyme disease.  I knew he was ill with something, but he never could get a clear diagnosis.

When he began listing all his symptoms my reaction was more that surprise because I have been experiencing ALL of what he described plus a few more symptoms.

I have been to specialist after specialist after specialist. None of them had ever even talked about lyme disease.  So I have learned to just 'live with it.'

After talking to him, I began to do some research. All the research I have found (symptomatic) is dead on for late stage.

I called my doctor this morning just to make sure about being tested for the disease ( i can't name all the tests that have been done on me!) And never had a test for Lyme. When I talked to my Dr, he stated he had never heard of Late Stage Lyme..  so here I am this afternoon look for more information and medical articles on the disease and I find this site.!!

I believe that Lyme Disease is what has been making me sick for all these years. I have everything!  Joint and muscle pain, unexplained fevers, migraines, on some occasions weird rashes, clumsiness (and I bruise easily), been diagnosed with depression - anxiety/panic disorder - ptsd - suicide, swelling of joints, bone pain, major fatigue but also insomnia because of the pain, numbness in feet and hands (this was the first symptom that led to get a checkup), increase in allergic reactions to antibiotics and allergy meds. What really bothers me is that I have had recent problems with numbers... adding/subtracting/switching numbers.. etc...I had to close my checking account because I kept switching numbers and ran myself into debt.

I have scoured this site and read almost all posts about this.  Talked to my doctor again, but he is still skeptical that this can even happen.

I have had several tick bites since I was a little girl, Grew up in the outdoors, love the outdoors.  Every year I find ticks either on me or in my house.

I am very frustrated and don't know how to convince my DR to do the tests that need to be to at least rule out Lyme disease.

I am tired of being sick and non-functional.  It may not be Lyme disease, but everything I have read...it fits. It never occurred to me either that it may be Lyme disease, and I should know more about this disease than I do, considering where I live.

Any help on talking to my DR would be extremely helpful.

[Kaydey]

I did hear back from a local Dr. this morning (oops i guess it is now yesterday morning).  It has taken me all this to digest our conversation.  

He is very interested in my case. He stated his sister suffers from Chronic Lyme ( he is originally from Colorado.)  I sent him a letter only because my 'daughter in law' has seen him several times...he is an Internal med.

He said to me that 'after reading my letter'  he is almost convinced it is Lyme, but we have to rule out MS first, and he has to read through my medical file (which is about 3 inches thick.)   I told him that, he didn't seem suprised.  After I told him that he asked if I had been diagnosed with depressive disorders....    I was not prepared for that question, because I left that info out of the letters and such.  When I said 'yes'  he responded that it is most likely Lyme.

Imagine, an Internest who might be Lyme Literate!  I go it to see him July 9.  But I go to the hospital for them to draw all my blood (joking...but a lot) on Friday.  I also have a LP.   This will be my second LP....hate them, but he is willing to work with me to diagnose  Lyme or find out exactly what is going on with me.

I hope he is sincere, because going through an LP is painful!!

[patsy10]

I am not familiar with the test looking at blood under a microscope.  The 10 days of antibiotics is to cause dye off of the bacteria which can cause the body to produce antibodies to lyme.  It is an antibiotic challenge.

[sick and tired 47]

Hi! Update for my situation. I am discussed my "negative" results with my PCP. He said negative simply means not enough bands where identified to warrant treatment or further testing. SOOOOOOOOO, stubborn me is getting copy of report from lab itself ( what a hassle)- not the negative only results my PCP office has.
   I scheduled appt with LLMD about 2 hours away- 1st available appt is 2 months from now and is very $$$.  He tests by Ignex- office said test is done after 10 days of antibiotics- why??- get more positive responses this way???
  Found another LLMD and actually talked to him directly... he currently cannot prescribe meds due to his "lyme treatment" practices. But he answered alot of questions for me and I loved his patience on the phone. He says he checks for lyme by looking under a microscope- is this good?? He can determine the strain of lyme ( says there are over 40) and what treatment method would work. He is also 1  1/2 hours away... and would have to refer me on to someone else for treatment.
   He suggested heavy metal toxicity has very similar symptoms as lyme disease and to check that out.
   My head is spinning from all these calls and info, but I am feeling like I am in charge again.... I know if I get a definite help from PCP if I have proof I have the little critters.  So wish me luck.... I thank God he has given me the gift of "fight" . I refuse to accept that this is "in my head", menopause/hormones, or  ?? just don't know and live with it. NO WAY!! Its hard when you have always been very healthy and very active and bamm!! Not any more.
Good luck to all, thanks for the inspiration. I am praying its not lyme's disease, but at least its an answer. Hard to go to battle when you don't know what or who you are fighting!
Keep me posted all!

[mrs_k75]

Welcome! I love this board. After the last 12 years of my life having weird on and off symptoms I finally realized I likely had Lymes. I was always told by the typical medical professional that Lyme only happened on the East Coast and it is very rare here. Now I learned differently. I had a bullseye rash in SF, CA when I was 12 back in 1988 I never thought to do anything about it because Lymes wasn't even heard about here. I also had a tick bite in Montana in 1998. I am like you, it has been real long road, but this encouraged me and gave me a step in the right direction to get treatment. I am currently being treated for Lyme. Everyday is different. I have overwhelming fatigue and a lot of joint pain. Good luck to you.

[patsy10]

I could be wrong but you may be disappointed with appts. with neuro's and ID's.  I found them to be a waste of time.  Others here will probably state a similar experience.

[JackieCalifornia]

You hang in there -- there may be bumps in the road ahead, but when you hit a bump it's proof that you're actually in motion!  You're right, first step is finding an LLMD.  Let us know how you go.