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Lyme Disease Message Board


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My story is a doozy so I apologize upfront for any confusion, frustration or tears this may cause. Laughter, however, is encouraged. It gets me through the tough days, too. Here goes… I noticed a rash on both my legs. Yes, both. I had no idea what it was so I made an appointment with my PMC. He tested me for a variety of things but could not conclude what the problem was. The Lyme test he did was an ELISA that came back negative. I knew nothing about Lyme disease at that time and did not pursue the issue further because the rash went away. This was January 2004. I really do not recall what my health was like over the next four years but in August 2008, I knew something was wrong with me. My left hand went numb. It started with the ring and pinky fingers of my left hand. That sent me back to my Dr. He said that it sounded like a pinched ulnar nerve. He told me to wear a hand brace. I did as I was told but then the entire hand and forearm went numb. I also noticed that I was having night sweats and feeling a little dizzy and tired beyond belief. Sometimes I would see a flash of light like someone took my picture. I lived alone then so no pictures were being taken. I went back to the doctor. He said it sounded like bulging discs. Huh? I demanded an MRI. He relented but said he had to ‘treat’ me for 30 days before I could have the MRI. Something about insurance. OK… I had the MRI after 30 days and it was inconclusive. But my PCP obviously saw something because he ordered another MRI of the brain and cervical spine, w/wo contrast. That MRI showed lesions. I went to a Neurologist and I was diagnosed as a ‘possible MS’ case – a CIS (clinically isolated syndrome). This was November 2008. Well if I was diagnosed as a possible RRMS MS, what am I doing here you ask? You thought that at just the right time because I’m just getting to it! For the next four years, I dutifully took my Avonex once a week and waited for the other shoe to drop. Besides the numb left hand and forearm, and slight back pain, the fatigue was the biggest issue for me. I had a few tingles in my left toes and the back pain flared …um…once a month…but nothing else. I decided to try to get pregnant this year so I stopped taking the Avonex in May 2012. Also during the time on Avonex, I noticed that my back had broken out. It was annoying me so I went to my dermatologist in July and he prescribed me Dual ointment and Doxycycline pills. Pills for a break out?? No way I was taking them. The ointment worked but once I stopped, the backne was back. So, I broke down and started the Doxycycline pills in September to see how they would do. WELLL…. First off, they made me sick as a dog when first ingested. The nausea and dry heaving was a mess but a funny thing happened – no back pain, no numb toes and could the feeling be trying to come back in my left arm/hand? Why? Could I finally be ‘remitting’ after four years of ‘relapsing’? Was it the pills? I jumped online and researched, researched, researched. Something I refused to do with the MS diagnosis because what I read about that disease initially terrified me. All that research ultimately led me here. I strongly suspect that I don’t have MS but have Lyme Disease instead and have had it for almost 9 years. That suspicion was magnified when I stopped taking the Doxycycline after three weeks. I have a 90 day supply but I gained ten pounds in 3 weeks!!! NO WAY! Research also showed that Doxy causes weight gain. Um, no. But right before/after I stopped the pills, it’s like my symptoms played catch up for the first three weeks they went away. My back feels like it’s breaking in half. I can barely keep my eyes open. The numb toes returned with a vengeance! Now, my entire left foot and left leg are numb. The left arm/hand is so bad now, I can barely use it. The brain fog was always a mess, too, but now it’s really bad. I feel terrible. Herxing?? I don’t know what to do now. I need to see a LLMD but I want to order the Igenx testing first. I live in NJ but, since I work from home, I am in NC visiting my parents. I’m off the entire month of December and I need to get to a doctor asap. I have to know for sure if this is Lyme. I’m fading fast. Any suggestions/advice would be greatly, greatly appreciated. I saw a post where someone spoke about a LLMD in central NJ. I can also do NC. Please email me any names: [DELETED]. Please leave your suggestions and opinions here. Thanks for listening and sorry it took so long. I left out SO MUCH to shorten my story but I’ve been suffering for quite a while and I need help!

-Mak





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