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Lyme Disease Support Network

Need help with doctors and types of treatment


#1

Hi everyone,

I’ve been dealing with lyme since 2006 but wasn’t treated until 2013. Since then I’ve been switching doctors and herbalists and nothing has helped. I’m currently going to a lyme doctor for about 2 years and a neurologist for about 3 years with barley any luck. So many people tell me I should go to someone else, or got to this kind or that kind of doctor, doctors in this hospital, alternative medicines and other types of treatment. The problem is that I am so tired and burnt out from going to so many doctors and constantly having treatments fail. I am at the point where I do not want to go to anyone and just continue what I’m currently doing even though it doesn’t help. I don’t think I can handle any more failures. I know I have to do something though or else I will never get better. And I’m stuck with everyone pushing me to see every type of doctor in my area and the surrounding states. I know they all mean well and just want me to get better so I can have a normal/better life, but its really frustrating when I don’t have the mental strength to keep trying new things. I’m so overwhelmed with all the doctors, treatments, protocols, and the whole western vs. traditional medicine debate. I’m looking for any advice you guys might have and any suggestions to figure out what kind of doctor is best for me or anything you think might help. Thanks!


#2

Hi, I have had Lyme we think for twenty years and was only treated for it four to five years later with two weeks of antibiotics. I also, have Hashimoto’s Thyroiditis, EBV, cytomegalovirus, HHV6 virus, coinfections off an on and have had a similar path to you. I also have sore throats, major fatigue/exhaustion, achy legs, joint pain is gone now (had it early on), memory issues, concentration issues, tremors, sound sensitivity, dull aches, anxiety, depression. I am seeing a Lyme literate doc for the last 10 or so years. It’s the hardest thing since it is an "invisible " disease and most of society doesn’t even believe there is a chronic Lyme illness which causes more despair and anxiety. I am booked to see an infectious disease and neurology docs in near future. I feel for you. The mental exhaustion is brutal. Hang in there. Lets message for support!


#3

Hi Lyss,
Please let me start off by saying YOU ARE A FIGHTER! I have been too many of the valleys you have been in, finally by the grace of God, My Doc tells me i AM ALMOST finished with lyme, my testosterone counts are normal for the first time in perhaps ten years, on there own with no help. Please tell yourself EVERYONE FIGHTS! NO ONE QUITS!
The treatment that salved my life is called LDI or low dose immuno therapy- from what I understand it hails from Germany, I had to pay cash for treatments, but thank God again a way was made, and it isnt that expensive. Also as you know the correct physician is essential, mine is in michigan and I believe sees folks from several nations.
Also, you may want to check out a hospital that treats two things, cancer and Lyme disease, unfortunately, they accept no insurance, but they have wonderful educational videos about our disease and why CDC guidelines are not permanent real treatments, my nurses opinion. it is called Envita.com
Lastly do you know what a Jarisch-Herxheimer reaction is? It may really help you to understand what is going on inside you. Keep the faith! Ray