What Would You Do If You Had An Unexplained Mysterious Illness Or Disease That Seems To Be Attacking The Central Nervous System .
I had such a thing for 30 years. Odd, seemingly unrelated symptoms. At the ten year mark, I thought I had fibromyalgia. But this was in the late 1980s, and docs either never heard of it or said it wasn't real. At the 25 year mark, I began to search for other possibilities as I got sicker. I thought about yeast. I changed my diet. Organic, no sugar. I changed to a less stressful employer. I thought about thyroid. No doc would prescribe it, though labs indicated it would be appropriate. I exercised more regularly. Soon I couldn't exercise at all. I revisited the fibro idea in 2009, and found it was an actual "thing". I was treated for adrenal exhaustion and low thyroid, yet little improvement. I found out I had many chronic or reactivated infections. I had high levels of lead, and was treated for that. I found out I have CIRS, inability to clear biotoxins like mold. I got sicker anyway. By then, I felt like I had the flu every day. A year later, another doc finally solved the mystery. I had Lyme. And seven other infections ticks can carry. I had been tested using the ELISA antibody screen several times. Always negative. I now know the test fails to show infection 70% of the time. The few times I had the better western blot type test, there was one positive band, and they varied. Each doc called that negative. They were wrong. Finally my blood was sent to IgeneX, who does high quality testing. Highly positive, after 30+ years. Meanwhile I had passed my exact infections to all my kids, who also had mysterious, diverse maladies. I had treatment from Lyme experts from 2010 to 2018. Many people can recover, even with such a delayed diagnosis. I have not. I have crippling fatigue and pain, cognitive problems, jerks, twitches, blinding headaches, numbness and tingling, periods where nerves lose myelin and create numbness and pain. I do not have MS. It is Lyme. Many autoimmune diseases and cancers are triggered by immune dysregulation caused by Lyme. If someone tells you you have any of these things, always consider Lyme as the underlying cause. Treatment is radically different.
Insist on a western blot from IgeneX. Pay the cash. If it's positive, learn all you can about the disease. You will be astounded at the complexities of the disease and the difficulties treating it. You will also find the worst side of medical science, dogma, and stigma exposed. Lyme is frought with dysinformation. It is poorly understood and horribly mismanaged. It is also bankrupting to treat.
Please know that Lyme is passed sexually as well. Tick not neccessary. I sincerely hope your symptoms aren't due Lyme.
Hi Marina! In 2016, on an ordinary day, I was driving home from work and when I went to get out of my truck, I couldn't walk, at all, the pain in my back and legs was so intense I could barely breathe. My family got me in the house, I went thru 6 months of every test available, mri's, cat scans, ultra sound, I was also treated as a guini pig for multiple shots to my back, nerve blockers, anti convulsive meds, you name it was tried on me, finally I had an emg/nerve conduction test(for me it was horrible), but I finally had a diagnosis, a bit rare disease called polyriadculopathy ,which there is no known cure for. Its where my immune system started attacking multiple nerve roots in my back, with additional symptoms of my equal librium off, my eye sight changing, regular bouts of hives, and other things.
I did not injure myself, fall down, nothing. It just happened, do not give up, there is an explanation for medical conditions, its finding the right professional, willing to not stop until it is found whatever it is. For a while I thought I was going crazy, most of the doctors i seen, made diagnosis without any testing and adminstered the treatment they felt fit their diagnosis. Since the day this had happened to me, i have learned so much, the most important thing, you know your body better than anyone, trust yourself and what your feeling, do not be railroaded into a diagnosis unless testing has proven it, do your research on the Dr or facility you go to. I hope the future for you will be improving and always try to stay positive! Its very hard when you are dealing with multiple medical issues, but it helps tremendously in facing the day! My best to you!
John I know being your own advocate is time consuming but what I found is entering symptoms and where they were and then I would add more things to those symptoms if I got a lead. Its just flat research, You would be surprised at how many things I told my doctors and my research and why I felt this was what was happening because of it, and low and behold I was right. Doctors dont have time to research everything so therefore they dont know things that they should. Many specialists have research assistants now that do the work for you, but in the mean time try to do as much as possible for yourself. I hope this helps in some way Jackie
I would get in tune with my body, let it speak to me thru my system. Find the core of the problem by self analysis. Read on the subject, learn all I could. Find the most world renowned Dr. in the field and share my self analysis.
Thanks so much Kelly .... truly appreciated.
Why Do Tecs Or Doctors Who Writes Up An MRI Only Treat Half The Person . Why Don't They Use An Electrollas On The Complete Nervous System.
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