This is topic When is ms ms? in forum General Support at LymeNet Flash.


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Posted by lyme in Putnam (Member # 11561) on :
 
I'm watching entertainment tonight and am angry about the segment of the stars with ms. Am I being selfish that ms got this publicity outlining their symptoms and Lyme has few or not sure if I believe it's ms and not Lyme. Either way, it's a shame for anyone to go through this. Is it just me being selfish or does your gut tell you practically most disease start as Lyme? How can you tell ms distinctly. Sorry it's just one of those days. I know there is ms, but it's frustrating to be looking at the wrong diagnosis.
 
Posted by Keebler (Member # 12673) on :
 
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See the Goldings article - and others - here:
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117839;p=0

Topic: Could (misdiagnosed) MS be Lyme?
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Posted by lymenow (Member # 36175) on :
 
I'm interested in this subject a lot. My cousin lived with me in a tick ridden appt. He got sick in 2006 and went through the system before being dx with MS. I got sick in 2009 and went through the system as well, also getting an MS dx.

He has been receiving medical treatment for 5 years now and is gravely ill. He's refused to take my advice of getting correctly tested for lyme. He is 6' 3" and 80some lbs and is fed through a tube while I am in treatment for many TBD's.

I cannot forcibly take him to see an LLMD..Not sure who's to blame, him or the doctors....Ultimately the IDSA.

Cannot say for sure he has lyme but I sure do suspect it. He's on a steroid, painkiller pump that keeps him going...Talk about treating the symptom and not the cause..If/when he dies(in his 30s), I absolutely blame the system.

Theres a point when it is no longer conspiratorial, just fact.
 
Posted by Lauralyme (Member # 15021) on :
 
oh wow that is a horrible situation
how sad
 
Posted by lpkayak (Member # 5230) on :
 
putnam...i think the way you do about it...

lymenow-that is so sad. i am in a similar situation as you. my brother was dx with lyme and treated 3 times . each time it came back. now hes mad at the docs cuz they dont know for sure how to cure him so he is refusing any tx until they have a cure. hes going downhill mentally fast...so fast i dont think he really understands how bad he is. but you're right. you cant force someone. and it hurts.

i think lyme is responsible for more than diseases and syndromes...i think it has a lot to do with aging. for years ppl say..oh my joints are creaky or i forget everything cuz im getting old. but why can there be so many who are in their 80's-90's who are still ok???
 
Posted by lpkayak (Member # 5230) on :
 
Dr C's Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077#000000
 
Posted by map1131 (Member # 2022) on :
 
I know how you feel Tutu. I've sat back all these years and watched famous people and everyday joe's dx with MS, ALS, etc.

How can I be so aware and the rest of the world seems so unaware? Am I crazy? Is my lyme world so blown up that I think everything is lyme & co?

I don't know why I've been allowed to see the forest for the trees.....but I do. We do. We know these monster(s) and what thye are capable of.

We know we aren't crazy once we see hundreds and thousands post everything we've felt and experienced.

I know when very knowledgable medical doctors like Dr K, Dr B and Dr C etc are seeing the same very high % of these patients with lyme positive WB.... we're not all crazy.

This is for real. When lyme & co is not treated in some form or another for years upon years, people dwindle away and die from MS, ALS, Alz, etc.

Some day it will come to light. I know it.

Pam

oh yeah MS is a symptom. They (the majority) don't look for the cause, the root of these sx. They label it and move on. Sad, so sad.
 


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