posted
Hi I found a local LLMD in March who seems to be very knowledgable, but have been urged over and over to get a second opinion before starting antibiotics as I am very sensitive to meds and in a lot of pain.
I have had chronic headaches and pain for 16 years and am now 37. I am opiate dependent and have two small children. I was diagnosed with fibromyalgia many years ago and have been treated that way until now. I had these positive tests before and nobody ever encouraged me to treat. My LLMD says I have Lyme because of these tests:
LABCORP
1) lyme IGM early test (.96) 2) low CD57 (31/ul) 3) bands 41 and sometimes 23 present 4) high Immunoglobulin M (244)
Any help understanding would be great. I'm anxious to start treatment if this is the right diagnosis. THANK YOU!
Posts: 8 | From Bethesda, MD | Registered: Jul 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You certainly do have lyme disease. In addition, you have some so-called coinfections (infections that often travel along with lyme disease)--specifically you have bartonella and anaplasma (also called ehrlichia).
Your tests are positive and you have the symptoms. Many were misdiagnosed for years with fibro when the true diagnosis is lyme and coinfections.
I know a good lyme doctor very near you who can see you in a few days. If you want the name, let me know.
This is what I learned in over 13 years around this disease: many doctors treat lyme disease, but very FEW know enough to get rid of it for a person. You have to find one of the FEW. I can give you a name.
Otherwise, you can waste years going to a doctor who doesn't know enough to cure you. You want someone who specializes in this complex disease. That means that their practice is strictly lyme disease or nearly so.
Don't waste time with a doctor who has a regular practice.
Read and STUDY the Burrascano Lyme Treatment Guidelines to get your education on this complex disease. It is here:
Page 24 talks about bartonella and page 25 about anaplasma.
The doc who tested you obviously knows something. Good for you for finding LymeNet and asking for help here. We will help you all we can.
Being "sensitive to meds" is common with lyme patients. Actually, what often is happening is that the meds are killing some of the many germs that have been in your body for years and it makes you feel lousy. It is called a herxheimer reaction. Read about it in Burrascano.
A lyme specialist will help you get through this and recover your health.
I had undiagnosed lyme, bartonella, and babesiosis for at least 10 years. Still, once I got to a good lyme specialist (but NOT when I went to 2 so-so or lousy doctors) I was symptom-free in 8 months and finished with treatment in 13.
I have the same life I had before lyme disease. It is now 10 years since I climbed out of the lyme hell-hole. I stick around to point others to the best doctors so they also can recover.
Get good treatment and you are on your way to a better life.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You also have EBV (Epstein Barr virus) which is common with lyme patients. Read about it on page 5 and 27 of Burrascano.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I can't believe you wrote back so quickly! Thank you! I lost my 20s and 30s to this and so badly want to be well. Please email me the name!
Posts: 8 | From Bethesda, MD | Registered: Jul 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sent you the name and lots of info.
Posts: 9931 | From Maryland | Registered: Dec 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Yes, agree with TF and no wonder you are suffering! A good LLMD will know how to work with patients who are sensitive to meds and in a lot of pain. Very common with Lyme.
The good news is that now that you know what you're dealing with, you can start to improve.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
There was an old member who got well from lyme and does not come often to lymenet anymore, called Bob.
He's fully back to work. He also used photons (PE1 and borrelia nosodes). I think he relapsed just once in many years, but got well again very fast with the PE1.
He was participating in lyme groups in Maryland (I think it was Maryland). I don't know if he has time to do that now, that he got super busy, though.
His screen name is lymie_in_md, number 14197.
He knows many people with lyme, many who got better too. You could try to send him a PM?
Posts: 6200 | From Brussels | Registered: Oct 2007
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Bob is here now and then. I would think he would respond to PM.
I go to a LLMD in Maryland. I'm on my 2nd, so if you have questions, let me know.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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