SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
URGENT INFORMATION ABOUT LYMES BY:
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
521 members
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URGENT INFORMATION ABOUT LYMES BY:

THIS POST WAS IN THE INTRODUCTION SECTION BUT I THINK IT IS REALLY IMPORTANT FOR ALL OF YOU TO READ IF YOU THINK YOU MIGHT HAVE LYMES OR A TICK BORNE DISEASE:

ORIGINALLY POSTED BY : WORRIEDABOUTGFR
WorriedaboutGFR  
Feb 03, 2012

To: Mrs. Aristotle and Everyone
Hi - I remember you from the MS Forum where I spent a lot of time, having spinal tap, MRIs etc. yielding no answers.  I've learned a lot since then.  I am one of the many, many people with Lyme disease.  Most are not diagnosed timely, if at all.  That is because of the fixation on diagnostics for disease-diagnosing in this country.  Truth is, Lyme diagnostics are highly inaccurate, missing potentially over half the people tested who really may have Lyme disease.  And Lyme is as serious a disease as MS or cancer - it just isn't recognized as such because of widespread active suppression of Lyme in this country.  Mrs. Aristotle, Lyme often involves excruciating pain. I suggest everyone here go to the ILADS website (International Lyme Disease) and view Leslie Wermer's video there (she died of Lyme) at http://www.ilads.org/lyme_disease/lyme_videos_9.html
Also, look at the home page at ilads.org and see what ILADS (a team of MDs) says about Lyme - how there need not be a "bull's eye rash" and you need never find a tick on yourself to have Lyme.  They also mention the inaccuracy of Lyme tests. So what do you do?  If your persistent neurologic symptoms have gone undiagnosed despite numerous tests, I suggest consulting a "Lyme-literate doctor."  Note, I did NOT suggest seeing an infectious disease doctor, but a "Lyme-literate" doctor.  To find one, contact ILADS or your local Lyme support group.  Lyme is a disabler and a killer that can mimick MS, ALS and other diseases.  Lyme diagnosis must be a "clinical diagnosis" based on your symptoms and history (NOT on diagnostics!).  For years I was blown off by infectious disease doctors and told I had a false-positive Lyme test.  The time I lost in dealing with the havoc that Lyme disease and its coinfections were wreaking inside my body due to nondiagnosis will likely result in permanent disability and premature death.  Don't lose time.  Find a "Lyme-literate" doctor now for evaluation.  You may get your answer and start to feel better with treatment.
Tags: lymes
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8 Comments
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thanks for re-posting this and stressing the importance of taking this seriously, maria.

pursuing LLMD treatment isn't easy or cheap, but if you get the proper testing, there is a serious body of evidence that people have recovered.

the antibody testing your other doctor did isn't good enough.  i wish you would go to breakspear and at least have the igenex blood testing done.  i know you are completely burnt out and tired of reaching dead end after dead end with more and more inept doctors, but maybe just give this one last unturned stone a nudge??

just my opinion.  

hugs & love
binx
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This posting and some of the suggestions by Niko have convinced me to cancel my appointment to have my blood drawn locally. I got the name of a LLMD from the ILADS sight. I will call first thing Monday morning and pursue the question of my insect bite through that doctor.

Thank you for the re-post. I hope that I can get some resolution to my issues through this doctor.

Does anyone know if insurance companies cover any of the testing and treatment for Chronic or Late Lyme's Disease? I suspect that they don't, but would be interested to hear differently.

Valerie
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I agree! It would be nice to know if this could finally be something that could help you.

Valerie
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dear valerie,

although i had to pay cash up front, i submitted my receipts from igenex to my PPO insurance and got a small portion of the costs reimbursed.  we have really crummy insurance, so if you have even tolerable insurance, they may cover more of it for you.

blessings,
binx
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1917408_tn?1329427500
Thank you for that quick response!

Thankfully, we have really good insurance, (one of the tethers that keeps people tied to my horrible job!) so maybe they will cover quite a bit.

Thanks again!
Valerie
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I made an appointment with an LLMD but they had nothing available until April 25. I am on a waiting list for cancellations so hopefully I won't have to wait that long!
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You will be surprised how quick it goes Val before you know it. Hopefully you will get a cancellation. Keep positive. Big hugs Mariaxx
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