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Lumbar Puncture Tomorrow

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Lyme Disease
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Posted 2/16/2016 2:50 AM (GMT 0)
Tomorrow I will be having a lumbar puncture... I have been misdiagnosed for 25 years, finding out last year at the age of 28 that I had chronic Lymes. I took my last pill (by choice) of doxycycline today as for being on it for over 6 months and feel like it's not working as effectively and the side effects I can go with out. I have almost passed away at the age of 25, at the time I was a single mother of a. 7 year old and an eighteen month old, working 2 jobs and in college. As for I still am. But only now, on my 3rd degree. I starting getting denied by I.D. Instantly! I drove for hours just for a 15 minute appointment many times. I tried over 57 doctors at every specialty hospital in Florida. Last month I spent $2500 out of pocket just for the trip up to Johns Hopkins in Maryland. I felt as if the Dr. there was just like the others. This dr. And another one from UHealth in Miami ordered a lumbar puncture. I'm tired of being sick everyday. I have lost every one and every thing. I want to feel well and I don't want my children to loose me. I will go through with it because I have seen worse days than this. :)
Posted 2/16/2016 3:45 AM (GMT 0)
Oh my gosh what a thing to go through. My thoughts are with you.

You say you have chronic lyme, so do you have a Lyme Literate Medical Doctor?
Posted 2/16/2016 4:31 AM (GMT 0)
No I do not. I live in Florida and it is very rare that a dr down here is specialized in Lymes let alone be an LLMD. I have been told I don't haven chronic Lymes and that its 1,000 things.... But they still "don't know" what's wrong with me.
Posted 2/16/2016 4:38 AM (GMT 0)
My heart breaks for you. Here's the thing about the lumbar puncture. The test will determine if in fact you have or do not have MS". It will also tell whether or not you have Lyme bacteria in your spinal fluid. If the test is negative, it does not mean you do not have Lyme. Lyme can be in your tissue, brain, blood, etc. on top of that, as you know, Lyme testing is very inaccurate.

When you go misdiagnosed with Lyme for many years, it will take many many years to get well. Six months on doxy is by far insufficient. Have you tried supplementing with herbs or supplements?

Hope you get some answers soon.
Posted 2/16/2016 4:51 AM (GMT 0)
If I were you I would research herbal protocols for lyme disease and pick one and go for it yourself. I fear that by going to numerous doctors you are getting the run around and not one of them will recognize lyme.

They will poo-poo the heck out of your own diagnosis. I had a neurologist tell me that I did not have lyme because you don't get a headache with lyme. Such a bunch of carrots!

I think you are chasing an elusive butterfly if you plan on getting a diagnosis of lyme disease with a regular doctor, infectious disease doctor, neurologist, etc.

I hate to see you add another 57 doctors to your list or more tests.

There is a way to be tested with your blood by Igenex. You might want to research them.
Posted 2/16/2016 5:31 AM (GMT 0)
Welcome to our community, A_Dose_of_K

I'm so sorry you have been suffering for all these years.

You said you were on doxy for 6 months - did your regular Dr. prescribe that?
Who diagnosed you with chronic lyme disease last year?
Being on one antibiotic alone for 6 months won't treat lyme and co's effectively.
Were you ever on any other protocols to treat co-infections?

If I were you, I would do the Igenex test - not a lumbar puncture.

If you found out last year you have chronic lyme disease...why go through the lumbar puncture?
Posted 2/16/2016 5:53 AM (GMT 0)

springsjean said...
My heart breaks for you. Here's the thing about the lumbar puncture. The test will determine if in fact you have or do not have MS". It will also tell whether or not you have Lyme bacteria in your spinal fluid. If the test is negative, it does not mean you do not have Lyme. Lyme can be in your tissue, brain, blood, etc. on top of that, as you know, Lyme testing is very inaccurate.

When you go misdiagnosed with Lyme for many years, it will take many many years to get well. Six months on doxy is by far insufficient. Have you tried supplementing with herbs or supplements?

Hope you get some answers soon.



I know I have it in my central nervous system and blood. No I have not tried as of yet but I am looking into the route.
Posted 2/16/2016 6:06 AM (GMT 0)

Girlie said...
Welcome to our community, A_Dose_of_K

I'm so sorry you have been suffering for all these years.

You said you were on doxy for 6 months - did your regular Dr. prescribe that?
Who diagnosed you with chronic lyme disease last year?
Being on one antibiotic alone for 6 months won't treat lyme and co's effectively.
Were you ever on any other protocols to treat co-infections?

If I were you, I would do the Igenex test - not a lumbar puncture.

If you found out last year you have chronic lyme disease...why go through the lumbar puncture?

Thank you,

I found out I had Lymes by mistake. I have been in and out of hospitals since the age of 7. I'm 29 now. Debilitating migraines daily with blackouts and facial numbness since I was 15/16. I contracted campylobacter last year in March some how I was in the hospital for a couple weeks. With that bacteria infection it caused arthritis and my primary referred me to a rheumatologist. I went and after a couple of random blood tests (that I've had many times my whole life) he stumbled upon my Lymes. He treated me with doxycycline within 3 weeks I was someone I never knew existed. I had energy. I didn't have ONE headache. I could work all day, pick up my kids from school, go grocery shopping, make dinner and do mom duties without blacking out or throwing up from exaughstion. It was amazing! I could go to the beach with my kids for the first time with out getting sick from the sun or just tired from even packing for the beach. After 2 months he took me off and all the symptoms came back. He tried again and off again twice more. After that he said that he wasn't going to give me foxy anymore and that since no dr will see me they I must be crazy. The next visit he opted out of treating me. I was left hanging. so my primary gave me doxy for the last 3 months to hold me over until I went to Johns Hopkins and that was a waste of money and time. But I'm desperate so that's why I am getting the lumbar puncture tomorrow.
I have over 25 symptoms.
Posted 2/16/2016 7:25 AM (GMT 0)
"...he stumbled upon my Lymes. "

So you had tested positive for Lyme disease...it was in your medical files and you were never told?

Then you don't need anymore testing...you need treatment.

I urge you to concentrate on that...not on more testing...especially not a lumbar puncture.

You can start a new thread titled:"Looking for LLMD in Florida".

Before I was officially diagnosed, I started on some herbs to treat lyme.
It is something you could do, also.
Posted 2/16/2016 11:39 AM (GMT 0)
The only "good" thing about the lumbar puncture is if Lyme shows up, then they may put you on rocephin and/or a longer course of treatment.

I urge u to find an LLMD. they are everywhere now.
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