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Lyme Disease Message Board

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Dear Rep. Gomes,
Thank you for your efforts in raising awareness about Lyme disease ,and treatment(or lack thereof).I would like to share with you my ordeal with Lyme.
In 2002,I awoke with a temperature of 104,stiff neck, throbbing thigh muscles, and severe headache. I went to my primary doctor. My primary thought that it was probably Lime disease, took a blood test, and gave me 10 days of Doxycycline 100mg 2x Dailey. My doctor told me that the test would probably be negative ,but if it was indeed Lyme,the Doxy would kill it. After about 3 days I felt much better. After the 10 days I was back to my old self. I went back to the doctor after a month and requested another blood test, as I needed to know what that horrible illness was. The test came back positive for Lyme.
In 2003,I pulled a tick off of my forearm. I noticed a rash developing around the bite. I went to see my primary, who gave me 10 days of Doxy again. After 3 days the doctor called me and told me that the Lyme test was negative, and that I probably just had a allergic reaction to the bite. I stopped talking the Doxy because it causes extreme sun sensitivity, and it was Summer.
In 2004,I noticed that I had shin pain when I took my Dailey walk at the canal. I thought that it might be shin splints. I started having neck and knee pain shortly after that. I went to my primary, who told me that I was getting old and that I have nothing serious to be worried about, all bloodwork was negative. I was 40 at the time.
By the first of 2005,I was having extreme muscle cramps in my legs that reminded me of the pain I endured when I had Lyme.I could actually see the muscles on my thighs moving and twisting. I also experienced muscle twitching all over my body. I now had neck, shoulder and knee pain, muscle cramps, and twitching. I went back to my primary and told him that my symptoms were getting worse. He sent me to a rhuematologist.
I saw the rhuematologist in April of 2005.He diagnose me with Fibromyalgia.He explained that it is a disease that has no specific cause, and causes pain in the muscles and joints. He gave me a prescription for an antidepressant (Zoloft)and told me that it would raise my serotonin levels so that I wouldn’t feel the pain so much. I never took the Zoloft, and figured I’d just have to go on with my life, and research this myself. All bloodwork for many diseases were negative.
By the early summer of 2005,I noticed that the nerve under my right eye was pulsating 24 hours a day. This was not like an eye twitch that everyone has now and then, but a constant throbbing nerve. By now, I had been on many message boards reading about Fibromyalgia.Many people on the board later found that their Fibro was actually Lyme.I went over to the Lyme board. I couldn’t believe it when I read many posts from people talking about the muscle cramps,twitching,and even the mysterious throbbing eye nerve!!!I was thrilled to think that this is very likely Lyme and that there is a cure for this!!
I found some Doxycycline in my medicine cabinet and took it for a week. I noticed that the neck and knee pain went away. I went to my primary and told him about how I was getting better with the Dixieland showed him my throbbing eye nerve. He gave me 3 weeks of Doxy,and told me’’ THAT”S IT! There is no proof that anything longer than 3 weeks is effective in killing lyme”He suggested that I either see an eye doctor or neurologist for the eye twitch.
After 4 weeks of the Doxycycline,the throbbing eye nerve went away! I knew now that this illness was indeed bacterial. I also knew now that this was Lyme and I am now experiencing the horror of many other lyme patients trying to get treatment, chasing symptoms. I knew that if I could just stay on the Doxy,that I could eliminate the throbbing pain and twitching of my muscles, as it was lessening. I also knew that my doctor was NOT going to give me anymore Doxy.I desperately tried to obtain Doxy.It was so frightening to know that I was sick and no Doctor would help me! My primary even suggested that the throbbing eye nerve was psychosomatic!
I talked to someone from a Lyme support group about my ordeal. The woman I talked to told me her story of chasing symptoms, negative bloodwork,the Fibro diagnosis, and finally an MS diagnosis. This woman was actually in a wheelchair for many years before discovering that her “MS” was actually Lyme!She is now leading a fairly normal life, with some residual nerve damage and neurological symptoms.
The woman told me that I was pretty much on my own ,and to try to obtain antibiotics wherever I could get it. I told a veterinarian my story and he couldn’t believe that no doctor would give me more Doxy,as they treat dogs with Lyme for many months! I had an appointment with the only knowledgeable Lyme doctor in 4 months. The vet gave me enough to get to the Lyme doctor. I continued to slowly get better.
I met a customer at work and told him my story of the muscle aches,pain,twitching and brain fog. He knew right away that this was Lyme! His wife was also in a wheelchair misdiagnosed with MS that turned out to be Lyme. She is now flying to New York every couple of months for IV therapy, and is slowly getting better. He warned me not to go see a neurologist .He told me that Lyme and MS leave the same lesions on the brain, and most neurologists don’t recognize it. He told me that they will probably tell me that I have MS and then taken down a long, dark road of therapy and drugs that I will not recover from!!

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