Lyme Disease

Posted by sundance6 @sundance6, Dec 30, 2018

I am new to this group. I have been trying to get a diagnosis for Lyme Disease for the last six months from my doctors in my area. Since I live in the desert they say there is no way I could have it! Yet all the research I have done says you could have been infecteded many years ago and because of stress or other things it can finally apperer. It started six months ago with a sever headache then I slept for 36 of 48 hours. Had the stiff neck, joint pain, fatigue and all of the rest of the symptoms. One last symptom that was strange that I just finally found in an on line paper that said one of th symptoms was Jaw Pain or toothaches that are not related to actual tooth decay or infection. I just had a total X-Ray done by my dentist two weeks ago and there is nothing there!
I guess waht I am asking is for Help! My medical provider in my area has done every test they can on every part of my body! For thousands of Dollars! And have yet to find anything!They refuse to even consider Lyme Disease or West Nile. Yes I did have the Blood test, but it was after I had been on to regimines of Dococyclines.
Could someone please give me some help!
Friends in other states can't believe the medical care I have gotten!!
Sundance

Liked by friendz4

@sundance Is there anyway you can get another Dr .or go to Mayo in Scottsdale Az. ?

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Hello @sundance6 — welcome to Mayo Clinic Connect. I'm tagging @tdemaria who has had a similar experience to bring her into the discussion. I have no experience with Lyme disease but do think a second opinion would be good choice. I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

Here are a few articles that may provide some information until a member with some experience shares some suggestions for you.

Mystery disease unraveled by Stanford neurologist
https://med.stanford.edu/news/all-news/2013/02/mystery-disease-unraveled-by-stanford-neurologist.html

New Treatment for Chronic Lyme Disease
http://www.synergyhealthconcepts.com/chronic_lyme_disease/

Lyme Disease Action Neurology & Psychiatry
https://www.lymediseaseaction.org.uk/about-lyme/neurology-psychiatry/

From what I understand Lyme disease can be hard to diagnose.

John

Liked by izzyi

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John, Thanks, I do live in Albuquerque so I am close to Phoenix. My only problem is I live on a fix income. I don't believe my Medicare Advandtage covers The Mayo Clnic but I will ask. As with many others it is very frustratating going through this! My medical provider refuese to admit what it is but they can't tell me what it iis. I first got a clue from watching a story on the Professional Golfer Jimmy Walker. It took him almost two years to find a doctor to say it was Lyme Disease. I can now understand his Frustration.
Maybe someone on here can offer more advice.
Thanks and Happy New Year!
Sundance

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@sundance6

John, Thanks, I do live in Albuquerque so I am close to Phoenix. My only problem is I live on a fix income. I don't believe my Medicare Advandtage covers The Mayo Clnic but I will ask. As with many others it is very frustratating going through this! My medical provider refuese to admit what it is but they can't tell me what it iis. I first got a clue from watching a story on the Professional Golfer Jimmy Walker. It took him almost two years to find a doctor to say it was Lyme Disease. I can now understand his Frustration.
Maybe someone on here can offer more advice.
Thanks and Happy New Year!
Sundance

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Yea, I dont know why they dont just treat you. I have all the signs of lyme disease as well, my dog was diagnosed about the same time my symptooms started. You treat it with simple cheap antibiotics but to not treat it cost the system more while they chase the symptoms. The cost of a single visit to the hospital is more than the antibiotics…. I have read they should treat the symptoms even if negative test. I am going to Dr this week and see what they can do and why they dont treat it. At least rule it out with cheap medication. I know they are cutting back on antibiotics for people who dont need them but catching lyme early is better than letting it go and become permanennt.

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@lioness

@sundance Is there anyway you can get another Dr .or go to Mayo in Scottsdale Az. ?

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Thanks Lioness, I may try and work on it. I don't know if my Medicare Advantage will cover it. I live in Albuquerque and have friends in Phoenix. I am changing companies this new year. I will also check with Mayo to see what they can do to help me. I am a 72 year old who has lived a very full life! I have traveled the world! I both snow ski, water ski, hike, fly fish and just enjoy life. I am 20 year cancer survivor!
I can't seem to do anything now! I can barely get up and down staris or work. Seems like I am dizzie all the time. They have given me medicine for headaches but I still have them.
Sorry for compaling.
Thanks for the suggestion.
I will check and keep the board posted.
Thanks,
Sundance

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TD, They first started out with a Zip pack of antibiotics. Then after a month they did a 21 day stint. Then had Lyme Blood test that showed up negative! Helped for a week or so then it came back, dr. was afraid to do anymore antibiotics. But I have read where people have been on a low dose for much of their lives. Maybe John can chirp in on this.
They now have me on Meds to Mask the pain,Topiramate 25MG & Gabapentin 2×100 x4 a day. helps some. But does not help the muscel weekness! Want to start a work out routine at the Y but not sure I have the strength.
Sundance

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@sundance6

Thanks Lioness, I may try and work on it. I don't know if my Medicare Advantage will cover it. I live in Albuquerque and have friends in Phoenix. I am changing companies this new year. I will also check with Mayo to see what they can do to help me. I am a 72 year old who has lived a very full life! I have traveled the world! I both snow ski, water ski, hike, fly fish and just enjoy life. I am 20 year cancer survivor!
I can't seem to do anything now! I can barely get up and down staris or work. Seems like I am dizzie all the time. They have given me medicine for headaches but I still have them.
Sorry for compaling.
Thanks for the suggestion.
I will check and keep the board posted.
Thanks,
Sundance

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@sundance, I have lyme and until you find LLMD, it will only get worse. It is life altering and an uphill battle. Peace to you and good luck.

Liked by lioness

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@kellye5

@sundance, I have lyme and until you find LLMD, it will only get worse. It is life altering and an uphill battle. Peace to you and good luck.

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@sundance6 , I once was on all of that. It is a horrid cocktail. One of the scripts that I am on and many of us are, is LDN. It helps the pain so much. Message me if you would like more info.

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@sundance6

John, Thanks, I do live in Albuquerque so I am close to Phoenix. My only problem is I live on a fix income. I don't believe my Medicare Advandtage covers The Mayo Clnic but I will ask. As with many others it is very frustratating going through this! My medical provider refuese to admit what it is but they can't tell me what it iis. I first got a clue from watching a story on the Professional Golfer Jimmy Walker. It took him almost two years to find a doctor to say it was Lyme Disease. I can now understand his Frustration.
Maybe someone on here can offer more advice.
Thanks and Happy New Year!
Sundance

Jump to this post

@sundance6 , I had to leave my medical provider as he also did not believe. Lyme tests according to the CDC, must show 5 confections to be considered lyme. Even one coinfection IS lyme. Check FB for lyme support groups. They save me daily

Liked by lioness

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@kellye5

@sundance6 , I once was on all of that. It is a horrid cocktail. One of the scripts that I am on and many of us are, is LDN. It helps the pain so much. Message me if you would like more info.

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@kelly5 What is LDN?

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low dose naltrexone

Liked by lioness

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@kellye5

@sundance, I have lyme and until you find LLMD, it will only get worse. It is life altering and an uphill battle. Peace to you and good luck.

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Thanks Kellye, YES IT IS! HAPPY NEW YEAR!

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@@everyone Parus had a good tradition at midnight flush 2018 and our pain Down The Toilet

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@kellye5

@sundance6 , I once was on all of that. It is a horrid cocktail. One of the scripts that I am on and many of us are, is LDN. It helps the pain so much. Message me if you would like more info.

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KELLYE, YES I WOULD LIKE TO KNOW MORE! HAVE NEVER HEARD OF IT! PLUS I WOULD LIKE TO THANK EVERYONE ON THIS BOARD FOR OFFERING HELP AND SUPPORT! IT IS REALLY DIFFACULT! NO ONE SEEMS TO UNDER STAND WHAT IT FEELS LIKE TO GO THROUGH THIS! IN SOME WAYS COLON CANCE WAS EASIER 20 YEARS AGO BECAUSE THEY SAW IT AND UNDERSTOOD IT! MANY THANKS AGAIN AND "HAPPY NEW YEARS" SUNDANCE

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@sundance6

KELLYE, YES I WOULD LIKE TO KNOW MORE! HAVE NEVER HEARD OF IT! PLUS I WOULD LIKE TO THANK EVERYONE ON THIS BOARD FOR OFFERING HELP AND SUPPORT! IT IS REALLY DIFFACULT! NO ONE SEEMS TO UNDER STAND WHAT IT FEELS LIKE TO GO THROUGH THIS! IN SOME WAYS COLON CANCE WAS EASIER 20 YEARS AGO BECAUSE THEY SAW IT AND UNDERSTOOD IT! MANY THANKS AGAIN AND "HAPPY NEW YEARS" SUNDANCE

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Leilanis, so I have researched Nalterone a bit. Is it over the counter? What kind of doctor can perscribe? Help me a bit with it.
Thanks, Sundance
Thanks also on whomever suggested LLMD site. I did find some dr. in my area. will check them out this coming week. Everything was closed here because of a snow storm.

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