posted
After months of back and forth to drs...hospital admits...possible wrong diagnosis for intractable migraine associated vertigo...now lyme diagnosis on friday........how can i prove or get neuro lyme diagnosis????.....further than the western blot i have had done and all the clinical symptoms i have had for the last 8 months????......and then what is the most effective treatment if this is what it is???....
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi Florence,
Are migraines and vertigo your only symptoms? Or just your 'main' ones (most disabling)?
You have probably already had a MRI? SPECT? Did they show 'white' areas? Is your testing positive for Lyme via Western Blot? These are some of the ways to "prove" you have neuro lyme...
However, the testing, as we all know is horrible. So basically, the best advice to be given is find yourself a goood doctor (LLMD) and let him/her 'prove' things for you.
Have you started to treat yet? As for the most effective treatment, sorry, that is also a 'crap shoot', what works for one may not work for another.....keep trying different treatments until you find your 'key'.
Ps I have the constant migraine/headache too.
Posts: 3975 | From usa | Registered: Aug 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Send you a PM Florence1.
You have one of the best LLMD's close by. It
would be wise to seek a doctor in flash
discussion seeking LLMD in NC or close. As many
have a month or more wait. It is also very
important to be on something to prevent yeast. I
take 4 nystatin a day and many take diflucan. If
they did not give you anything call them and
tell them you think you have yeast, itching and
need a script.
They also think it will help prevent biofilm from
forming which is what protects the bacteria from
antibiotics. There are many things you can do to
help in treatment. If you get symptoms from the
doxy you can post here for help and solutions.
Many have to start low and slow and ramp up and
some have no problems. The worst problem is
length of treatment. Most docs will not treat for
the required time it takes to effect a cure.
Which is why you need a LLMD to give you the best
chance.
Always get copies of all test results.
Priceless as many have been told neg. when in
fact they had lyme specific bands which to a LLMD
should have been treated and prevented the crippling effects of borrelia. Good luck. And prayers.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lyme Disease is a clinical diagnosis. You need a good Lyme doctor(LLMD)!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Hard to tell that to a medical person who had been
trained to go by the test results. Since you are on
Doxy please ask Igenex what is required for best
results. They used to say off for at least 10 days
before draw. Or you can just wait till you get in
to see a LLMD.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Regarding the most effective treatment, I found the Dr. Joseph Burrascano lyme treatment protocol to be the key to getting rid of this disease from hell.
Using this protocol, my doc got rid of my lyme, babesiosis, and bartonella in a year. I have sent many friends and acquaintances to Burrascano type docs. Most of them get rid of their disease in 1 year's worth of treatment also.
Read and STUDY them. Your health depends on it. You have to know what good lyme treatment looks like.
When calling lyme doctors, ask if the doc follows Burrascano. Try to get one who does. This is the protocol that I have seen work for many people.
Burrascano is the lyme disease guru of the U.S. and the world. He treated lyme disease for about 25 years. He wrote his Guidelines to tell other doctors how to get rid of this disease. Now, he is traveling the U.S. and other countries teaching doctors about this disease. In Poland I understand there are 6 lyme docs and they all follow Burrascano.
Can't argue with success. It has been 4 1/2 years since I completed my lyme treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
I had lyme undiagnosed for about 10 years.
The doc is the key to getting rid of this disease. I can't stress that enough. You need a doc with a lot of expertise. Call your local lyme support groups (see left side of each LymeNet page and click on "Support Groups") to find out which doctors are getting people well.
Posts: 9931 | From Maryland | Registered: Dec 2007
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