A long read but short compared to my MS journey -
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. I then did copaxone for about 2 yrs. I mixed in all kinds of supplements and even LDN along the way. Tried diets, too. Progression continued.
When CCSVI came onto the stage, I rushed to get dx’ed. I had procedures done by the most experienced doctors in New York ad California. We all know who they are
I found another doctor in Texas to treat my May-Thurner and place a stent in one of my jugulars, which had shrunk to a diameter of 2 mm. (This is a minimum of 1 cm in most people.)
Along the way, through all these drugs and procedures, I experienced some improvements but an overall decline in my disability. Since it seemed as though I had exhausted the simpler , less damaging options and seeing no halt to my disability progression, it was time to move on.
I asked my MS specialist what I should consider next. The suggestion was Rituxan. I wasn’t crazy about this due to the possibility of getting PML by re-activating (or un-cuffi ng) the JC virus, which I was told the majority of the population (92%) actually has. (This percentage was told to me over the phone by the good folks at Baylor C of M who were going to test me beforehand for the virus.)
I decided to explore other avenues.
I began by getting my thyroid checked. After all, my mom and 2 sisters all had issues. Everything looked fine with mine, though.
And then one afternoon I was going through Netflix and came across Under Our Skin, a documentary about Lyme. I remembered seeing threads on this forum about Lyme disease but never really read them through. So, what the hell – I might as well watch this documentary. It got interesting and made some sense to me. After all, I remembered getting bit by a tick (in Texas) and developing a rash about 15 years ago. So I went to my PCP and demanded a Western-Blot Lyme test.
The results came back. They told me I was negative for Lyme over the phone.
I just happened to go with my wife one day to the doctor’s office (we use the same doctor) so I asked for printouts of all my labs. I looked at the Western Blot and noticed that one of my antibody bands out of about 20 came back positive (Igm 23). My doctor told me that the CDC didn’t consider this a positive test for Lyme so there was nothing they could do for me.
So I tracked down a LLMD (lyme-literate md). She heard my case and ordered more blood work to test for co-infections of Lyme, another Western Blot, and a test called CD-57. She put me on some antibiotics and told me to come back in 3 weeks.
I met again with her today. None of the tests for co-infections came back positive. The same band (Igm 23) popped up again but no others. The interesting result was from the CD-57 test. For those who don’t know what it is, basically it measures the activity level of Lyme disease in your body. Here are a couple of links that will explain better:http://www.truthaboutlymedisease.com/ph ... p?f=6&t=10http://www.healthcentersofamerica.com/i ... cfm?id=144
My CD-57 level was 16! That is chronic lyme according to the chart.
My LLMD explained to me about other things that can cause low CD-57 levels but between her and me, I HAVE LYME! Unfortunately the CDC says different until I have more bands show on the Western-Blot!
So she doubled my abx dosage and we’ll retest again in 2 weeks. She seems confident we will eventually get the CDC dx by forcing more bands to show! (Texas just passed a new Lyme bill that I believe will allow doctors to try this for an extended period of time – it’s amazing what happens when a congressman gets Lyme and goes through it himself!)
She has treated hundreds, if not thousands, of Lyme cases and knows exactly what to do. Over 30 years of experience, too!
So, I believe I have finally found the cause of my illness! What a different life I would have had if my initial doctor would have known about chronic Lyme and tested and treated me 6 years ago! I feel robbed and somewhat angry to say the least!
All the pieces in my puzzle are now starting to fit together – from my tick-bitten leg being the first to show symptoms to my vascular issues (Lyme causes vasculitis)- it all makes sense!
Now I have a lot of hope again! Maybe I can halt my progression or even turn it around! Time will tell...
Please do yourselves a favor. Find a LLMD to get these tests – Western Blot,co-infections, CD-57. If for no other reason than to rule Lyme completely out!
Good Luck and God Bless!