posted
I have been incredibly ill for 3 years. I had to leave my great teaching job because my mind just could not handle the demands, my body was shot with pain. I went to Mass General, St Elizabeth's Hospital, Spaulding Rehab Hospital, and at least 10 other doctors of different specialties....all they could come up with was fibromyalgia or nothing. Three weeks ago I woke up in the middle of the night and heard a man outlining his symptoms on Mystery diagnosis,(it had to be the grace of the universe),and I thought, my knees swelled up like balloons, and I cannot walk very well, and so many of the symptoms were similiar. I contacted the nearest support group, and a very nice person called me back with names of Lyme Literate Doctors in my area. I have seen one, waiting to see the other, and waiting on the lab results, but clinically diagnosed with Lyme. I am tyold that I will be on meds for 2 years. I started two meds, three weeks ago, and have recently started the herx reaction. My GP is terribly opposed to my decision to go to the Lyme Literate doctors, but I dont care. I want to get better, I want to be able to fold laundry and put it away,....simple things, enjoy being with a friend, but I do not have any friends left, except my bed and television. Cant eat, always nautous, pretty lonely, and scared. I hope I will get better.......just need some hope today
-------------------- RWM Posts: 18 | From New Hampshire | Registered: Oct 2010
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posted
rozmil - You are doing the right thing, my regular doctor continues to say she does not agree with what I am doing treating for Lyme on a clinical diagnosis with a LLMD.
And I continue to improve with that treatment, I was on a fast downward spiral and thanks in a large part to Lymenet I had educated myself to the point that I felt confident in my decision and continue to feel that way because I continue to get better.
My doctor was content to tell me I was probably developing MS and also told me that there is a ever expanding problem in this area with these types of patient "complaints" - can I just ask why they went into the medical field if they are not interested in doing any research to help their patients get well.
Oh and you do have friends left - we are all right here !!!!
Hang in there it DOES get better - alot better.
Posts: 448 | From minnesota | Registered: Feb 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Congratulations, roz. You are now on your way back to health !!
I truly believe God had you watch that Mystery Diagnosis program as His way of telling you your diagnosis.
I went undiagnosed for 10 years. Lyme literally stole 5 years of my life. But, once I got to a good Burrascano type lyme doc, I got rid of this disease from hell.
It is now 5 1/2 years since I completed my lyme treatment and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
That can be you too, dear. But, the doc is the key.
I strongly advise you to study the Burrascano lyme treatment guidelines found here:
They are not an easy read because they were written to teach doctors how to treat this disease. So, read a little at a time. Read parts that apply to you right now. Read the symptom list and other pages that interest you.
This document will give you your education on this disease. And, that is worth its weight in gold.
If you don't know about the lyme disease controversy, here is a video that was done by a Boston TV station about 2 years ago. It will help to explain it. Doctors like your GP have been miseducated by the Infectious Diseases Society of America (IDSA), and that is why they oppose the lyme doctors.
I remember how I was before being diagnosed--nauseated 24/7, couldn't eat, pretty upset that nobody could ever figure out what was wrong with me--offering me antidepressants and telling me there was nothing wrong with me, etc. Meanwhile, I was so sick I should have been hosptialized.
But, after so long a time, I too got delivered. Because I suffered so long, I can't just go my way and forget about the others like you who are coming behind me, having to learn, needing help and a friend who understands.
That's why I'm still on lymenet after all these years of being rid of lyme disease.
We will help you here any way we can.
The most important thing you can do is read the Burrascano Guidelines. Burrascano is the lyme disease guru of the U.S. and the world. When he practiced, they came from all over the world to see him. His Guidelines are used by doctors all over the world.
Educating yourself will go a long way to dispelling your fear. Because, when you read in Burrascano that lyme causes this and that, then when it happens to you, you won't think you are having a heart attack or have cancer or are dying, etc.
Good thing you know about the herx reaction to meds. Be sure not to eat sugar, bread, anything made with flour, no cereal, no rice, no pasta, etc. or you will get yeast in mouth and intestines.
Be sure you take a refrigerated probiotic plus yogurt or kefir daily to keep your gut in good shape.
Ask questions and we will answer. You are in a good place. Welcome!!
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, absolutely no alcohol and no smoking. You cannot get well if you do these things. Read it in Burrascano.
Also, no fruit. Too much sugar in fruit. But, eat lemons and drink lots of water. They cleanse the body and will make your herxes more mild.
My now famous lyme doc told me to eat 4 lemons per day. I never ate that many, but you can squeeze the juice of a whole lemon into a glass of water and drink that down. Some say they feel better within an hour of doing so.
I just drank water all day long, nothing else, and always squeezed lemons into it. You have to use fresh lemons, not concentrated lemon juice.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
You are absolutely doing the right thing! And yes..please ck out dr burrascanos treatment guidelines. The diet made a world of difference for me. You will beat this and you will get better.
Posts: 624 | From Oklahoma | Registered: Jun 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
You made the right decision. Do not allow others to throw guilt or shame & blame for breaking tradition.
You've come to the right place for help. When I came here I had just found out I was positive for band 41, I was very early stage Lyme & waiting to see an Infectious Disease duck. But, fortunately, after reading the posts & getting guidance, I found an LLMD 3 hours away who could see me in...get this...2 weeks!!!! That's a miracle!
Had I waited on the ID duck to see me, I'd be on my way to being in the chronic phase, or close to it. So now, after a little over 3 months treatment, yes, you heard right, 3 months....early stage Lyme yet still taking a long time to heal! Only symptom I have left is joint/muscle pain with no permanent damage to the joints.
You are on your way to recovery!! We will support you.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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quote:Originally posted by rozmil: [QB] I have been incredibly ill for 3 years. I had to leave my great teaching job because my mind just could not handle the demands, my body was shot with pain.
I went to Mass General, St Elizabeth's Hospital, Spaulding Rehab Hospital, and at least 10 other doctors of different specialties....all they could come up with was fibromyalgia or nothing.
Three weeks ago I woke up in the middle of the night and heard a man outlining his symptoms on Mystery diagnosis,
(it had to be the grace of the universe),and I thought, my knees swelled up like balloons, and I cannot walk very well, and so many of the symptoms were similiar.
I contacted the nearest support group, and a very nice person called me back with names of Lyme Literate Doctors in my area. I have seen one, waiting to see the other, and waiting on the lab results, but clinically diagnosed with Lyme.
I am tyold that I will be on meds for 2 years. I started two meds, three weeks ago, and have recently started the herx reaction.
My GP is terribly opposed to my decision to go to the Lyme Literate doctors, but I dont care. I want to get better, I want to be able to fold laundry and put it away,
....simple things, enjoy being with a friend, but I do not have any friends left, except my bed and television.
Cant eat, always nautous, pretty lonely, and scared. I hope I will get better.......just need some hope today
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Welcome. I'm sorry you have to be here.. but SO GLAD you were finally diagnosed!!
I'm a retired teacher. I lost my job to this disease too. It took me 42 yrs to be diagnosed. God had a hand in that diagnosis too! (like your own case!)
You CAN get well!! I've been off antibiotics for 6 yrs now. Except for some things that are permanent, I'm doing well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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