Given that I didn’t update everyone here on Friday, I figured I would explain what happened at my neurologist’s office on Friday evening.

Because I don’t want to put all my eggs into the one lyme disease basket and because I found my last visit to the neurologist beneficial (informational at least), I wanted to take a two-pronged approach.  I had to have an electromyography and nerve conduction velocity test, which is essentially an electrical impulse test done on my legs and back. It was extremely painful at points. The doctor put a sensor on one part and sent shock waves to it that got increasingly stronger. Then, he used a needle to do another test wherein the needle was inserted into the muscles and nerves to see if my nerves were sending impulses to the muscles. There were 2 tiny glitches (could have been technical in fact), but happily I passed everything. 

While the lyme results show issues, there are still other things that could have caused my problems. So, I am having more blood work done (SSA/SSB, Rf, SPEP, IgG, IgA, IgN, Cardiolipin Ab’s, Antiphopholipid Ab’s panel) and going back to the neurologist on the 23rd. Oh and I am also scheduling an appointment to have another nerve test (SSEP) on my upper and lower extremities at St. Luke’s/Roosevelt in case the lyme doctor doesn’t think that my case is suitable for antibiotics.

The neurologist seems to really feel this isn’t MS. He said if everything else fails, he can always suggest an MS Center (doctors he actually trusts though) - but he seems to be feeling like this is a bacterial (lyme is a bacteria) or viral issue… He does feel like MS could be caused by a virus or bacteria - and because ‘Northern Europeans’ are newer in terms of genetics, the replication and sorting of the genes may not have had sufficient time to get rid of this issue (I don’t have time to write out our entire genealogical chromosomal discussion - but I’d like to do a bit more research into the subject).

Health right now: My feet and ankles are still prickly - but I was actually able to run a tad bit on Saturday! It was amazing. The neurologist asked me whether I could run and I didn’t know - so I was elated that I could. However, Sunday, I was absolutely exhausted — and interestingly my husband and daughter felt equally drained.

Next Steps:
Labs –> I am going to go (hopefully tomorrow) to have the blood work done.
Medical Records –> My neurologist made a great point about the fact that no one followed up on some blood tests that I had years ago - and he wondered what else could be gleaned from looked at all of my medical records. I’m embarassed to say that my records are scattered and I haven’t done the necessary gathering and subsequent analysis on them myself. So, I am contacting prior doctors and hospitals to pull it all together. Once I have a better sense of things, I will write a post about it.

I went this morning to pick up the iGenex lab result papers from my doctor. I was confused by it, but I took it to that coworker who has been helping me. She read it over and told me that hers came up the same way - and she gave me a ton more information. She said that her brother also tested positive for EBV (mono) even though it was really lyme causing all sorts of strange results – and that my case of positive for EBV was most likely the same. She went on to tell me that her IGG results were negative six times but that IGM came up as positive just like mine. If you have prolonged (for a long time) illness than the antibodies may show up as negative on the IGG. She went on to describe many other symptoms and results that were scary but seemed right on with things that I know about first-hand.

My results for IGM Western Blot: bands 18, 30, 34, 45 are positive, bands 41 and 58 are very positive, and bands 23-25, 31, and 39 are indeterminate. (Everything else negative)

My results for IGG: bands 18 and 58 positive, 41 is very positive, and 31, 34, and 39 are indeterminate. (Everything else negative.)

My other results for coinfections:
B burgdorferi (genomic and plasmid) - negative
B. microti, IgM 1:40 titer - May suggest evidence of infection.
B. microti, IgG <1:40 titer - Suggests no evidence of infection.
Human Monocytic IgM <1:20 titer - Negative for IgM antibodies
Human Monocytic IgG <1:40 titer - Negative for IgG antibodies
Human Granulocytic IgM <1:20 titer - Negative for IgM antibodies
Human Granulocytic IgG <1:40 titer - Negative for IgG antibodies
B. henselae IgM 1:40 titer - (not = or < 1:20 so not negative) positive
B. henselae IgM <1:40 titer - should be considered negative
Babesia Fish (RNA) - negative

The coworker recommended her lyme knowledgeable doctor in New Jersey.
They don’t accept insurance (of course) so the first visit for a lyme consult is $250. Subsequent visits are less… but of course just getting there via the bridges and turnpike will cost me as well. I’m looking forward to having the doctor review the results herself and determine next steps.

1st visit: May 22nd at 11:00 am (that’s the earliest available)

Today is a funny day — A year ago, we were riding as a family in Bike New York, the 42 mile bicycle ride through the five boroughs of New York City. One year later and my health is my primary concern…

I am wondering about the results of the lyme disease test that are still not in. There are a variety of thoughts going through my head –

• If the test is negative or doesn’t reveal anything: I’ll wonder first if the results were read correctly. (Apparently, there are bands that need to be interpreted.)  Then, dread will set in because I still won’t know what caused the numbness. Even though I have another appointment with the neurologist on Friday, I’ve honestly put many of my eggs in one basket (thinking it was lyme) because nothing else has seemed reasonable.
• If the test is positive: I’ll feel a bit vindicated personally that I sought and found an answer that the doctors never considered. Of course, this will frustrate and disgust me at the same time with the medical community. I’ll wonder then if the long antibiotic treatment will work to treat all of the weird symptoms I have had over the years. And will there be side effects of the treatment as described by Amy Tan? How long would the treatment last? Should I find a lyme knowledgeable doctor in lieu of my own doctor for this treatment?

Overall though, I’m anxious to get on with my life. I’ve been trying to ‘act normally’ and have been pushing myself to do more fun stuff — but some of the symptoms like numb legs/feet and short-term memory loss get in the way of  so many things. Right now, I’m not driving and I keep feeling like I am forgetting to do simple things (in the middle of writing a list of to do items, I forget some of the things I intended to write down). Clearly, this isn’t normal and normality would be really nice right now…

I got back from the new neurologist a few hours ago, and am going back to see again him next Friday at 6:15 pm — after the kids have their annual check-ups… Dr. C asked me about my history, the medical history of my parents, and my symptoms. He then did a clinical test of my reflexes, balance, hearing, sight, senses, strength, etc. I’ve had the test done many times and sort of know what’s being expected and my husband and I do the sensory test ourselves at home too. We talked about various other illnesses that can mimic MS and he wants to rule out everything before he can definitively say — it really is MS because I am not exhibiting the normal signs of MS vis-a-vis lesions this time. So, we’re sort of at ground zero… yet there’s a wealth of tests and exams that have been done on me over the years and he’s going to get all of the data together to truly understand what has been done and what’s missing. Puma seems to believe that Dr. C doesn’t think that MS may be the right diagnosis … and he asked me whether I had been tested for or doctors had ruled out things like syphilis (this semi-horrified me), Guillain-Barre, and many others… And of course, Lyme is still the obvious one that we’re just waiting on. Again and again, fascinating — but I wish it wasn’t me.

How am I feeling now though? So many of you have called to ask, but it is truly hard to articulate still. My feelings change on a regular basis. In the mornings, my legs are stiff and through use during the day, I feel things loosening up and walking become a bit easier. The stairs are still hard, but I force myself to use them whenever possible because I think that practice does help. My thighs felt like they were burning in patches last week and for part of this week, but my newest symptom is that my toes feel like I have smothered them in oil (slippery if you will). The numbness is still worst in my feet and ankles, but truthfully I am numb throughout the legs –although the amount changes.

It has been quite some time since I wrote about anything that wasn’t personal (I’m waiting for some medical news before I write), but I have a few meaningful topics that I wanted to address. This year, one of my goals was to reduce our footprint on the world –and I really was interested in reducing our trash specifically. During the last few months, we made a few changes that I wanted to share:

1) Reusable Shopping Bags: It seemed that every time we went to the grocery store or any store for that matter, we were given plastic bags. These bags accumulated in our cupboard and closet and although we used some bags for bathroom trash, it was clear that there’s was a better way. We purchased 7 reusable bags. The amazing thing is that these bags stand up on their own (making filling them easier), hold a lot more, don’t rip, and don’t need to be doubled to be sturdy.

2) Cloth Napkins: Every night, we used to put paper napkins on the dinner table. Some days, our dinner was messy and we used multiple napkins - but we always used at least one for each of us. After dinner, even if the napkins weren’t really dirty, we’d throw them away. My husband suggested trying cloth napkins - one for each of us (including the toddler). I was able to find stain proof napkins and they’ve been wonderful. Each of us has our own napkin and when they get dirty, we wash them. The initial cost was higher for the cloth, but we’ve saved in not buying the paper alternative.

3) Cloth rags: In our household, paper towels used to reign supreme. I used them to sop up watery messes, clean the house, and various odds and ends. At the same time we switched napkins, we also picked up some dish towels (similar to what you might find to clean tables in restaurants). And, they’ve also been fantastic. I used a few tonight when my son dropped water outside the bathtub — and it made me realize just how unnecessary the paper towels were for these messes. We still have 1 roll of paper towels for certain types of messes (paint comes to mind) when I’d rather not use cloth.