almostCLever Update

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almostCLever Update

Postby AlmostClever » Mon Apr 30, 2012 1:14 pm

Hu all!

Thought i would pop in and say hi to those who remember me me and share my story and update.

I was dx'ed with MS about 7 years ago when i went to the doc with a tingling sensation in my toe,

A spinal tap was done which showed bands but my brain MRI showed no lesions,

We ran a Devic's test thru Mayoclinic which was negative.

Doc assumed I had MS and started me on the MS drugs,

Disability progreesed,

Did everything including CCSVI procedure multiple times,, no lasting improvements,

Was getting rdy to do chemo last summer when i happened to watch a documentary on Lyme Disease, i remebered a tick bite and rash 20 years ago,

Got tested for Lyme - negative,

Found LLMD (lyme liyerate doc) who put me on abx and kept testing me,

3 months later - CDC positive for Lyme!

I am now taking abx longterm and it may be a few years before i can walk again,

The point of the story is - Lyme is often misdxes as MS and other neuro diseases!

I GUARANTEE THAT MANY OF YOU REALLY HAVE LYME!

Even if you've been tested for Lyme before, you need to find a LLMD and have them look at you,

Immunosuppressants and steroids are the worst thing for bacterial infections like Lyme so make sure you rule it out!

God bless you all and good luck!

Never give up!

A/C
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Re: almostCLever Update

Postby shaight » Mon Apr 30, 2012 2:14 pm

good for you! i totally agree with you that most likely many people have Lyme instead of MS.

my former regular doc (unfortunately he took a job running a hospital...good for him) spent a couple hrs with me and a white board discussing Lyme. it is truly amazing how complex it is to diagnose. i am so grateful to him for his time and knowledge on the subject.
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Re: almostCLever Update

Postby LR1234 » Mon Apr 30, 2012 2:43 pm

I was positive for lyme once and then negative twice after so told it was not Lyme. However right in the middle of my first bout of glandular fever (aka mono) when I was 15 I was negative for epstein barr. It wasn't until 6 months later it came up positive.
These blood tests are just not reliable. Maybe I need to look into Lyme again.
I hope the abx help you x
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Re: almostCLever Update

Postby AlmostClever » Mon Apr 30, 2012 3:11 pm

LR1234 wrote:I was positive for lyme once and then negative twice after so told it was not Lyme. However right in the middle of my first bout of glandular fever (aka mono) when I was 15 I was negative for epstein barr. It wasn't until 6 months later it came up positive.
These blood tests are just not reliable. Maybe I need to look into Lyme again.
I hope the abx help you x


LR1234 - thanks!

Get a cd-57 test done as well. A low cd-57 indicates lyme even when the western blot returns negative.

Dont think lyme test can be false-positive but can be false negative all of the time!

Watch "Under Our Skin" on internet or Netflix!

Good Luck!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Re: almostCLever Update

Postby CaveMan » Tue May 01, 2012 2:30 am

Was just scrolling through posts, never heard of the connection,
How common is misdiagnosis?
Just did a search and found a serious rant on the topic,
Bit of conspiracy theory, is the auther a looney or on the money?
http://owndoc.com/lyme/multiple-sclerosis-is-lyme-disease-anatomy-of-a-cover-up/
I am just an interested individual trying to crack the autoimmune nut.
Partner has Graves Disease, 5 years, showing good test results, looking forward to potential remission in the near future.
3 friends have MS, 1 just recently diagnosed, severity 7/10.
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Re: almostCLever Update

Postby AlmostClever » Tue May 01, 2012 5:29 am

Hi Caveman

Your partner and friends are lucky to have a friend like you!


I have read the article you mentioned. It has many points that can't be denied. Conspiracy may be a little fanatical of a term to use to describe what is going on.

What can be said here is tha MONEY AND MEDICINE DON'T MIX!


Everyone with any nero disorder should be checked out by a lyme knowledgable doctor, if for no other reason than to rule Lyme out.

If I would have been properly dx'ed 6 yrs ago, I would be healthy and not in a wheelchair today!

Tell your friends to find a LLMD and get Lyme ruled out - or in!

Lyme IS everywhere!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Re: almostCLever Update

Postby ikulo » Wed May 02, 2012 10:08 pm

I had a western blot through Directlabs (Labcorp), which came back CDC positive. Then found a doctor near me who was open to testing. She had me tested through Igenex, which came back negative. Strange. Was put on Doxycycline after the positive test. I started feeling better after a few weeks. After the negative results came back, Doc told me to stop taking the Doxy. I told her I'm feeling better, and with the positive findings of recent papers about Doxy and MS, I decided to stay on the Doxy. No miracles, but I have stabilized a bit.
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Re: almostCLever Update

Postby AlmostClever » Thu May 03, 2012 12:21 am

ikulo wrote:I had a western blot through Directlabs (Labcorp), which came back CDC positive. Then found a doctor near me who was open to testing. She had me tested through Igenex, which came back negative. Strange. Was put on Doxycycline after the positive test. I started feeling better after a few weeks. After the negative results came back, Doc told me to stop taking the Doxy. I told her I'm feeling better, and with the positive findings of recent papers about Doxy and MS, I decided to stay on the Doxy. No miracles, but I have stabilized a bit.



1. find LLMD!

2. Get a CD-57 test

Bandscan disappear after starting abx. A LLMD would have had you take a Lyme cyst buster like Flagyl and perhaps rotated your abx to something else like Zithro or Ceftin. Lyme will go into cyst form to avoid detection.

Saw my LLMD today who attended the most recent conference on Lyme in CA. She said that although i have never tested positive for a co-infection (babesia, bartonella, erlichia) the conference recommended treating anyway for co-infections so she added Mepron to my Zithro. I will also do 2 weeks of Flagyl because some of my bands disappearred on my last Western Blot.

Good Luck!

BTW Her practice partner was dx'ed ALS and later found to really have Chronic Lyme! 13 months of abx and made total recovery! lyme is the great imitator of all diseases!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Re: almostCLever Update

Postby ssmme » Thu May 03, 2012 6:29 am

Back in 2006 when I was dx'd with MS I was told that Lyme disease doesn't cause spinal cord lesions so if you have brain lesions and spinal cord lesions then it's definitely MS. No lyme test was done. If I only had brain lesions they would have ordered a lyme test. Has anyone else been told this?
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Re: almostCLever Update

Postby AlmostClever » Thu May 03, 2012 7:18 am

My first MRI - no brain lesions, only spinal lesions.

Over the years I developed brain lesions.

Lyme gets everywhere in the body inluding the brain!

Don't listen to a doctor who says you can't have lyme.

Get a Western Blot.

Get a CD-57" (measures immune system response to Lyme)

WHEN YOUR ONLY TOOL IS A HAMMER, EVERYTHING LOOKS LIKE A NAIL!

Neurologists carry a hammer.

Get Lyme ruled out! Wish I did!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Re: almostCLever Update

Postby ssmme » Thu May 03, 2012 11:22 am

How do I get one or two if the first is negative?
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Re: almostCLever Update

Postby AlmostClever » Thu May 03, 2012 12:05 pm

ssmme wrote:How do I get one or two if the first is negative?


Normal docs will not normally give another test.

You must find a LLMD!

Go onto a lyme forumand there will be areas to request the names of LLMDs in your area.

A LLMD will start you on abx and retest after a month or so. They will also do a CD-57 in addition to the Western Blot.

Even though my first 2 tests were negative my CD-57 came back in the chronic lyme range!

After 3 months, all bands appeared on my Western Blot and i got the official CDC Lymie Label'

You gotta stir up the bacteria because they are very good at avoiding detection!


Good Luck!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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