Important Suggestion for Limbolanders

[WorriedaboutGFR]

Hi Lulu, Quix, and everyone!  Miss you!  I used to frequent this forum while having MRIs, spinal tap, etc. all yielding no answers.  I've learned a lot since then.  I am one of the many, many people with Lyme disease.  Most who have Lyme disease 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 being testing 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 it in this country.  Lyme imitates other illnesses, often neurologic, and can also involve excruciating pain. I suggest everyone with undiagnosed neurologic symptoms and/or excruciating pain 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 ILADS home page at ilads.org and see what ILADS (a team of MDs) says about Lyme - that there need not be a "bull's eye rash" and you need not ever 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.  Lyme diagnosis must be a "clinical diagnosis" based on your symptoms and history  (NOT diagnostics!).  Some who are officially diagnosed with MS, ALS, Parkinson etc. really have Lyme disease. For years I was blown off by infectious disease doctors and told I had a false-positive Lyme test.  The years I lost in dealing with the havoc the disease was wreaking inside my body due to nondiagnosis will likely result in permanent disability and premature death. It has already reached my kidneys.  If you are undiagnosed and not getting anywhere, don't lose any more time.  Find a "Lyme-literate" doctor now for evaluation.  You may get your answer and start to feel better with treatment.

[HokeyP]

Wow, I had no idea so thank you for the info and sharing it.

I will pass this on to quite a few people because for some reason I've had about 3 people I know call and ask me about my MS symptoms either because they have been having some wierd things happening to them or someone else they knew.

I wish you the best and hope things start to go your way.
Pam

[Lulu54]

What a great, timely reminder.  We have a lot of limbolanders here again and it is so important that they get the correct diagnosis .  From what I know, it really is essential that you get a lyme-literate doctor, one who knows about the disease and know the ins and outs of diagnosis and treatment.  That may be more important than getting a neuro who specializes in MS.  

I am so sorry to hear that your treatment delay is causing such problems for you - there is that tipping point in Lyme disease that is hard to come back from if you don't get the right treatment in time.  

Thanks for taking the time to come here and share this important message.  Please stop through and let us know who you are getting on, ok?

hugs,
L

[essdipity]

THank you fro this reminder. We talk about Lyme here quite a bit, because it is a huge MS mimic, and in fact, MedHelp has an active and knowledgeable Lyme community.

Your post is particularly relevant for me at the moment, as I've just learned that my sis has been diagNosed with Lyme in the past few days. Haven't had a full discussion with her yet, but it seems definite. MRI, good blood workup, and proactive doctors. Her main symptoms have been fatigue, brain fog and blurry vision. She's on dox. For I think 6 weeks, to start.

I do agree that Lyme can be very serious, and I urge those not otherwise diagnosed to look into Lyme carefully. You don't have to live in the rural Northeastern US (though my sister does) to get Lyme.

ess