Search found 365 matches

by AlmostClever
Thu May 03, 2012 11:05 am
Forum: General Discussion
Topic: almostCLever Update
Replies: 11
Views: 1784

Re: almostCLever Update

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 ...
by AlmostClever
Thu May 03, 2012 6:18 am
Forum: General Discussion
Topic: almostCLever Update
Replies: 11
Views: 1784

Re: almostCLever Update

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 I...
by AlmostClever
Wed May 02, 2012 11:21 pm
Forum: General Discussion
Topic: almostCLever Update
Replies: 11
Views: 1784

Re: almostCLever Update

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. Afte...
by AlmostClever
Tue May 01, 2012 4:29 am
Forum: General Discussion
Topic: almostCLever Update
Replies: 11
Views: 1784

Re: almostCLever Update

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! Ever...
by AlmostClever
Mon Apr 30, 2012 2:11 pm
Forum: General Discussion
Topic: almostCLever Update
Replies: 11
Views: 1784

Re: almostCLever Update

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. ...
by AlmostClever
Mon Apr 30, 2012 12:14 pm
Forum: General Discussion
Topic: almostCLever Update
Replies: 11
Views: 1784

almostCLever Update

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 th...
by AlmostClever
Sun Jan 08, 2012 10:46 am
Forum: General Discussion
Topic: Almost clever checking in ;)
Replies: 8
Views: 1436

Re: Almost clever checking in ;)

Yes, Lyme is everywhere in the U.S. it is considered more endemic in the northwest. Yes, I had the characteristic bullseye rash from a tick bite long ago but I knew nothing about Lyme and did not go to the doctor. The blood tests for Lyme are notorious for false negatives. If you had a band go posit...
by AlmostClever
Sun Jan 08, 2012 9:39 am
Forum: General Discussion
Topic: Almost clever checking in ;)
Replies: 8
Views: 1436

Almost clever checking in ;)

Howdy y'all! Been away for awhile since I was dx'ed with Chronic Lyme instead of MS. I've been on IV antibiotics now for 12 weeks. (Rocephin, Zithromax) no improvement but my labs definitely indicate Lyme. Every 4-7 days I have a good day where I have more energy but most days are hard. My treating ...
by AlmostClever
Fri Oct 07, 2011 10:25 am
Forum: General Discussion
Topic: Lyme and ME
Replies: 14
Views: 3214

Re: Lyme and ME

I was officially dx'ed with Lyme today! Increase in CD-57 score and new Igm band showed up after starting antibiotics! Good enough for the CDC and insurance! PICC line goes in Monday and start IV abx! OFFICIALLY MISDIAGNOSED WITH MS!!! HELL YA!! FIND AN LLMD!!! GET TESTED FOLKS! IT'S MORE COMMON THA...
by AlmostClever
Tue Sep 13, 2011 4:02 am
Forum: General Discussion
Topic: Lyme and ME
Replies: 14
Views: 3214

Re: Lyme and ME

mrbarlow, Excellent! Fiona He is an American and such a breath of fresh air compared to the asshole UK Docs I have had over the years. You can have a conversation about treatment / ideas about treatment without being patronised and spoken to in a dismissive condescending manner. I am not that keen ...
by AlmostClever
Fri Sep 09, 2011 12:31 pm
Forum: General Discussion
Topic: Lyme and ME
Replies: 14
Views: 3214

Lyme and ME

A long read but short compared to my MS journey - My background: I was diagnosed with MS about 6 yrs ago (age 35) when I went to the doctor with a tingling sensation in my right big toe. A spinal tap was performed to confirm the MS diagnosis. I started on Rebif and developed a resistance after 1 yr....
by AlmostClever
Thu Sep 01, 2011 7:50 am
Forum: General Discussion
Topic: Lyme Disease and MS
Replies: 22
Views: 5615

"Antibody tests usually involve mixing the patient’s sample with a known antigen, the substance that the antibody is directed against or produced in response to, and seeing if a reaction takes place. If an antibody is present and binds to the known antigen, the formation of the antibody-antigen comp...
by AlmostClever
Thu Sep 01, 2011 7:40 am
Forum: General Discussion
Topic: Lyme Disease and MS
Replies: 22
Views: 5615

Re: Tysabri (Lyme disease and MS)

The Western-Blot for Lyme actually looks for proteins (specific or associated with Lyme bacteria). Antibodies are used in the lab to detect or react with these proteins. I believe Tysabri would not affect these proteins in your body, so a Lyme W-B would still be unaffected after taking Tysabri. I d...
by AlmostClever
Wed Aug 31, 2011 2:28 pm
Forum: General Discussion
Topic: Lyme Disease and MS
Replies: 22
Views: 5615

Yes. The W-B has a low accuracy rate. Most figures I have seen range between 40-60% accuracy! Far from 100%!
by AlmostClever
Wed Aug 31, 2011 3:55 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Legs on fire
Replies: 12
Views: 1956

pk,

When I sit in my wheelchair (which is ALL DAY) my legs and feet start to burn. I use one of those calf massage machines and the pain goes away.

Makes coldness go away also.

GL! A/C

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