I was going to put all this behind me, not to write a final blog on the subject..but I feel I must. If anything I can enlighten others who have questions. And, I can write and read how I got my answer – again. 🙂
I hope I don’t sound disparaging, but explaining to others a misdiagnosis or the rational on why a neurologist chose the more severe diagnosis is the same as my trying to explain to a ten year old the gravity of giving childbirth and becoming a mother.
Unless you have lived this frustration, you will never know. And, I am finding out how all too common this epidemic of Lyme is. I have had three people come forward already with their story of how they were originally diagnosed with Multiple Sclerosis to be told they were in fact a Lyme disease victim.
Also, regarding my medical treatment, even with my Blue Cross / Blue Shield, I am being asked questions I am asking myself to this day.
Regardless, of my repeated findings of how neurologists receive kickbacks for meds, the many times I was told by a pharmaceutical scientist income determines the quality of care, I am still shocked I was treated like a number. A price tag. A MRI. Not a human being.
Since I wrote last, I was battling the adjustment of Low Dose Naltrexone–1 mg the first month, 3 mg the second month, to obtain my goal of 4.5 mg, which I am at now. (I am continuing since my LLMD told me LDN is beneficial to Lyme as well.) Lyme causes depressive episodes, anxiety, insomnia. All to which LDN has helped tremendously. So, I am living proof to stay on it.
As the LDN experiment went on..One day I would feel energetic and upbeat. All for the second day to feel as though I was viciously attacked by a wild animal. Just in complete muscular pain, extreme fatigue and my usual knee / feet pain, that I treated with massages, jacuzzi time, and Bio Freeze. I continued on the Swank diet, supplements, stress reduction, exercise when I could, and my LDN. While holding on to all hope I would put the MS, if I had it, in remission.. Or at least, prevent any attacks. Since I never recalled the first one, I didn’t want to find out what it was like.
Oddly enough, late at night when I couldn’t sleep, I would pick up my trusty laptop. Not to check Facebook or look for new music, not even read MS medical information. I knew all there was to read on the subject. But I would always gravitate towards Lyme Disease information. As hard to believe as it sounds, I am not a fiction writer-wish I was, I was simply overwhelmed with the gut feeling I had Lyme all along. I read all I could. Lyme support groups from people who lived it, how the MRI findings by Mayo Clinic read ‘small white matter lesions’ (my MRI’s exact description..) How if one has Lyme they will go through depressive states for no reason; anxiety, pins and needles, muscular pain, arthritic joints, burning in limbs, irregular heartbeats, insomnia, brain fog..and more.
I would come to a moment where I would think of the advice of others from MS groups. “You are in denial..you will come to terms with it..” — But I would dispute that for myself-knowing-how could I be in denial if I am fighting it everyday? Researching, reading, checking in daily on a MS suport group, taking 14,000 iu of liquid vitamin D3, many supplements, not letting my baths get too hot-even though I can withstand the heat. The list goes on and on of the discipline.
I remember one day talking to a friend on the phone, from the Swank group. She mentioned -in passing- how scary it was to at first experience the Lhermitte’s Syndrome .. I asked, “what’s that?” she was puzzled, “Donda, it’s where you bend over to blow dry your hair and it feels like theres a phone on your back on vibrate. You have never felt that?” I was nervous, “No. I haven’t.” She was baffled. “I don’t know if you have this, Donda..that’s one of the earliest signs..” A statement that was said to me over and over again through 2010.
While my gut screamed, “You don’t have this. Something is wrong.”
It’s funny how you can train yourself. I was now a warrior in this MS fight. I had to live with what I was told and plug through. Turning down every pastry at a party, choosing fish over meat at a barbecue, checking all oil intake, being sure my toothpaste, shampoo, everything was gluten free. (Can’t have gluten while on LDN-it affects the ability for it to work.)
As I still hit the library and looked up all the information I could find on .. Lyme Disease.
One night I was studying the LDN support group more extensively to find many threads on Lyme and LDN. All the Lyme patients were talking about how often they were misdiagnosed, led to believe they were hypochondriacs or mentally ill, the long suffering while waiting for treatment-as their symptoms sounded like mine, how their tests will read negative up to six tests, how hard it is to find a LLMD (Lyme Literate Doctor) .. And, a greek god, who saved me personally and others I’m sure, answered, “If you have Lyme, or even suspect it, you should see a well known LLMD in PA, he is amazing.” .. he told others. (but the name/number was blocked out from the privacy rules of the support group.) Thankfully, his email was showing. I immediately wrote him, asking for the information of this almighty LLMD. I had the information in hours.
I then went on my quest to determine why the original Lyme test I had done didn’t cut it. I was finding more and more how difficult it is to even find Lyme. Top it off with the news / fact that if they don’t do extensive testing on all bands for the disease markers. It won’t ever be found. But Igenex, from California, was a different story. Lyme can be so hidden, it can still show a false negative, the test I was given is 80% INaccurate. Igenex is 90% accurate.
I made my appt., with the LLMD..months ago. While all my paperwork & tests sat in his office. I was put on a cancellation list, just in case.
Before we left for vacation, as I stared off thinking, for some reason, I picked up the phone to see if his office still had me on that list. The secretary informed me I was indeed on the list, as it hit her. “Oh! as a matter of fact, I just got a cancellation. Would you like it?”
I went in 2 months sooner.
As I walked in the waiting room, on August 15th, it was exactly how the Lyme patients described it. In a medical professional building. Very quaint. Quiet. One secretary. My first thought, ‘another one bites the dust..’ I sat down. Feeling the stress overload from seeing yet another doctor, too soon. As I sunk myself into a chair and my tight neck tried to adjust to looking around and ‘feeling my surroundings.’ Bobby went to the front to let her know I was checking in.
Bobby handed me my paperwork and I read through them. Basic paperwork I filled out too many times, then the seventh page woke me up. It was a long explanation on how the Dr. takes time with each patient because Lyme is such a serious state. So we are to feel free to leave for dinner, shopping and return. I looked at the man across from me who seemed as though he waited so long, he was about to snap. I whispered to Bobby, “get ready..we are going to be here forever..”
As the time slowly ticked by, no pun intended, classical music played over and over, Bobby’s eyes were growing more red by the second.. he said, loudly, “this music is going to put me to sleep..” .. I had slipped over to the couch at this point, ready to nap. A woman walked in, had a seat and was all the more eager to talk. “Hi honey, these are long. But he’s worth it..” As we had a discussion, she told me how she was from NYC and traveled every six months for a check up, her appt., was hours earlier-she had just gone to dinner, how her knees had arthritis, how her children all had lyme. All from camping..& this LLMD saved their lives. Then as I could feel my newly growing nails from my super pill-LDN, being chewed off and dropping on my lap, she told me about her best friend’s husband who was diagnosed with MS, treated with MS meds and his autopsy showed he had Lyme all along.
When she went in, I looked at Bobby and said, “my god..we are on to something here.”
It was finally my turn.
As this short, clean, perfectly dressed man from india entered .. the doctor shuffled through my paperwork, he kept saying to himself… “beautiful. beautiful report.” — I was frozen. WHAT THE HELL IS SO BEAUTIFUL PAL?! Just kidding, but inside, I thought HUH? Wow, this guy loves his work.
I had three moving things said to me that I will never forget.~
When we finished the physical test, EKG-which was perfect he said, bloodwork, interview..hours later..he sat me and Bobby down again to straighten my many papers from three doctors. “Okay, Duunndaa, this is classic case of ..” — I was there for an answer. I would deal with the outcome of hearing it later. I stammered, “uh..err..MS?” .. he quickly grew with trained frustration by his plight with speaking English. “Uh, no, you have damage to small intestine, enlarged lymph nodes, and severe inflammation in your stomach and your brain, this is classic case of Lyme. I sorry, I not speak as quickly as I like..even if I not have tests, I would treat you. That’s how sure. Your MRI shows clearly Lyme, and blood test worked anyhow.”
When I asked how the neurologist in Pittsburgh could put me on copaxone and tell me such a serious diagnosis, he said.. “I not know. He work too fast. Pictures, blood, symptoms, show Lyme.”
I continued to question him. “What about my spinal tap having too much protein?” — He said, “So? Lyme show too much protein in spine as well. Identical diseases..”
**Dear god..can you imagine the fear for seventeen months, to be given a concrete answer.**
#2~During my physical exam, as he took my hands to study them, he asked about my rings. He spoke of how jewelry showed respect in his country. Giving jewels is a sign of power. After he advised Bobby on how to help me with fishing line, if my fingers become swollen, he looked at my right hand. “What is this?” he asked. “That’s my Mom’s dinner ring.” Ironically, he asked, “How is she?” I grew uncomfortable, as I tend to do with the thought, “She died..both my parents died of cancer.” His face grew serious, “you know, this is for the best they are not here for this. You understand?” — I teared up, nodded.. ” Yes.” I answered.
**My mom was there with me. I didn’t bring her up. And it wasn’t because I wore her ring, but she was there.**
When I questioned his testing and how sure he was, he pointed to a enormous medical book that I was salivating over. “Do you see that book?” I have been a doctor for 55 years and I can open that book and still learn something I do not know today. Lyme, I know. It is all I do everyday, treated, explored and studied. You are classic case of Lyme.”
When I questioned him again, “I have your blood. You have Lyme. Go home.” — As he looked at Bobby, “Oh my you give these women something and they want more.”
There is no money, only other than my insurance, for this doctor giving me antibiotics, IV treatment, and teaching me a holistic approach to healing, which he done when he battled Lyme himself. My neurologist in Pittsburgh, pushed a drug on me that costs $2200 dollars A MONTH. When I told the doctor of Johns Hopkins diagnosing me with Radiological Isolated Syndrome, he laughed and shook his head. I asked, “What is that?” He said, “I not know. I was going to ask you.”
Little did I know as we lived in Cheat Lake, a house nestled at the wood line, surrounded with railroad ties, a jungle to mow, trim, water every two days as Bobby worked away, while deer traveled daily through the woods and field behind us, as I left my garage door open every day to smoke my crappy cigarettes, as I experienced the first symptom of a lyme infested tic bite-and suffered through a two week flu, in which the flu meds gave no relief whatsoever, I was bit by a tiny little angry sonofabitch that turned my world upside down.
But thanks to the little bugger I found a stronger, new improved me.
And, once I accomplish treatment-hell hath no fury like a woman scorned. As in with how I treat myself in this short, combative life. 😉
*The many of articles on Lyme Disease Misdiagnosed as Multiple Sclerosis. http://www.lymeinfo.net/multiplesclerosis.html
*& One of the many reports in journalism. http://abcnews.go.com/GMA/story?id=5300584&page=1
And so life goes on …