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I refused to see a neurologist as my doctor was insisting,but I went to an infectious disease doctor who ordered an MRI.This was October 2005.This infectious disease doctor also didn’t believe that I had lyme because of the negative test,or possibly from speaking with my primary.
My primary called me the next day to inform me that there was “something “on my brain stem and it looks like a tumor!This was a Friday,and I was to go to my local hospital on Monday to get a referral to Mass. General.My primary suggested that I come by the office to get some sedatives to get me through the weekend or for whatever lies ahead.The Neuro-oncologist called me to make sure that someone was with me for support and an extra set of ears to understand what I was to be told. I couldn’t believe that after chasing symptoms for a year,it had come to this!
I was told at the local hospital that my MRI showed a primary brain stem tumor,and that it’s in an area that no one would dare go.My husband and I were devastated.I was given an appointment to Mass.General two days later.
I saw a team of neuro-oncologists.They wern’t so willing to to declare me terminally ill.They reviewed my MRI and thought that it could be a tumor,or a lesion,or even something that’s been there since I was a baby.They all agreed that I had two different things going on. They thought that the twitching,aches,and pains were a central nervouse system infection of some sort,very likely Lyme.They said that the area of my brain where the”tumor” was located,affects breathing and heart(which is why they weren’t willing to biopsy),and does not affect muscle function. I endured a painful spinal tap to look for tumor cells.The test was negative.The test did show evidence of Lyme,but the doctors said that the test doesn’t tell whether I had it,still have it,or got it again,but they know that the Lyme is very tricky at detection . The team ordered me to go in an IV of antibiotics for 1 month.They sent the orders to my primary so that I could receive the therapy at home.My primary doctor tried to convince me that this was not necessary.He told me that the test was negative and that he took an oath to “Do no harm”,and that this therapy would violate that oath,.The team insisted that I get treatment,and made sure that I received it.They ordered another MRI in 2 months to see if the “lesion” was growing.I was so grateful to have a team of brilliant doctors finally believe, and treat me for Lyme.The brain tumor issue was just more anxiety that I endured for 2 more months through the holidays.
After a month of dailey IV injections at home,I finally got to the only Lyme Literate doctor in the area.This doctor explained that the throbbing eye nerve is very common in lyme patients because lyme attacks the nervous system,and that particular nerve is vunerable.All of my symptoms were consistant with Lyme.He prescribed a course of therapy of antibiotics that penetrate the cell wall of the bacteria and kill it.It can be a slow process,but I was assured that I would get better.I burst out crying.Finally,someone understands this and is going to treat me!I have been on this protocol for 4 months now and am getting remarkably better.The muscle cramps have subsided, the brain fog has ceased,and the aches and pains are occasional and short lived.The doctor explained that I’m not experiencing joint pain but nerve pain,and that’s why the Tylenol never worked.I’m now working 4 10 hour shifts at a very physical job and have my strenght back. Because I still have the twitching occasionally, I don’t feel ready to go off the antibiotics,because I believe the lyme will multiply, but I’m very close to being cured.
My next MRI showed the exact same picture. The doctors all agreed that I do not have a brain tumor,and that perhaps the right side of my brain is slightly larger than the left, but I don’t need to worry any longer about this.They ordered one more MRI in 3 months, just to be sure ,and wished me well in my lyme recovery.The next MRI was the same and the doctors told me I no longer need to come to the brain cancer unit any longer.
I am astounded at the amount of money my insurance company spent on me chasing symptoms of lyme,when all I needed was a simple course of antibiotics for several months or longer.The doctor refused to give me more than 3 weeks of Doxy because they believe long-term antibiotics are harmful.I was astounded again when I brought my teenage son to the dermatologist for acne and he prescribed Doxycycline 2xdailey for the rest of his teenage acne prone years!!!! I will never understand how insurance companies don’t want to pay for antibiotics, but will pay for all those doctors I saw, and 3 MRI’s chasing symptoms. The doxycycline that I bought off the vet cost me $38.00 for a 4 month supply without insurance! This is a complicated disease with a simple cure! To think that I had to resort to an underground network to get better is a crime! If I believed the misdiagnosis of fibromyalgia,I’m sure I would be much worse now,taking antidepressants,and thinking I was having a bad “Fibro” spell.
I know that there are hundreds of people with equally horrifying stories of knowing your sick,but no one believing you ,they were my support throughout this ordeal. I’m grateful that I am strong enough now and healthy enough to tell my story,and make a change to the system.Everybody wins,patient and insurance companies,when Lyme is propery diagnosed.There are so many different strains of lyme and co-infections now that there couldn’t possibly be a test to detect them all .Please work to help the many people like me that are going from doctor to doctor right now chasing symptoms,or worse,being treated for the wrong diagnosis because the test is negative.At the very least we must protect the few who are treating it properly,and insist that these other doctors learn everything about Lyme.My primary based his refusal to treat me on the CDC guidelines which say that longterm antibiotic are ineffective, even though I know hundreds that have been cured through proper therapy. My new primary says that the CDC changes their recommendations as they learn more and someday will probably change their theory on this issue.Until,then we must help to support the few who are treating and healing us.They are the true heroes that are upholding the vow to “DO NO HARM”.


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