posted
Hello, I received call from Doctor who signed for Igenex test. She was not my PCP as my PCP did not think I needed to worry about anything unless I was running a fever or still had flu like symptoms. The Doctor I saw got a call from health department in Kansas today saying they were notified I was positive for Igm according to Igenex standards. She had yet to look over the actual tests results her office received today. She will do that and is mailing copies to me today. I have a question I was wondering if I could get some suggestions on.
1) What do I do after I get my copy of test results?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You now have to find a doctor who specializes in treating lyme disease. Such a doctor is called a lyme literate medical doctor (LLMD) here at LymeNet.
To get your education on the disease that you have, I suggest you read and STUDY the Burrascano Lyme Treatment Guidelines found at the top of Medical Questions and also here:
Then, try to find a lyme doctor who follows the Burrascano protocol. That means high-dose combinations of antibiotics. Not just one antibiotic at a time.
And, the doctor must be knowledgeable about the various lyme coinfections and how they are treated.
Follow the diet Burrascano recommends so that you do not get yeast in your mouth and gut. And, do his exercise requirement to boost your immune system. Take the supplements he recommends also.
You can call the support groups in your area for names of doctors who follow Burrascano. See Support Groups on the left side of the page.
You can also post in Seeking a Doctor section of LymeNet to get names.
Do a lot of research on the doctor. If you don't understand lyme disease, you won't be able to make a good choice of doctors. So, study the Guidelines.
We will help you here all we can. Welcome to LymeNet!
p.s. Always keep that copy of your positive lyme test. You will need to show it to any doctor you use for lyme treatment. Many people need to switch lyme doctors, so be sure you always keep your copy of that test.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
You can make a post in Seeking A Doctor asking for referrals to LLMDs near you - put the state(s) in the heading that you are willing and able to travel to.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
thank you for your replies. I am not convinced it is for sure lyme yet. I want to see the test this weekend for myself. IF it turns out that it is positive only on Igm, wouldn't that mean it is false positive? I did have an atypical rash. It grew to three inches and slowly faded from inside out. It lasted a little over two and a half weeks. It did not itch nor was it painful. I had been in area where deer feed regularly.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
ohdeer, if the state considers your lyme test positive, and if you had a 3-inch rash that lasted over 2 1/2 weeks after being in an area frequented by deer, you really need to accept that you have lyme disease.
State law regarding what equals a positive lyme test is extremely strict so that many with lyme do not meet the state standard. So, you are meeting the very strict state standard.
Positive on IgM is all that is required. Actually, less than that is required by a lyme doctor.
So, every lyme doctor in the world is going to tell you that you have lyme disease.
Look on line to see how different lyme rashes can look. Read page 7 of Burrascano Guidelines. The rash does not have to itch or be painful. My rash didn't itch and it wasn't painful.
I never saw a tick.
You really are trying to fight the truth here. Read page 3 of Burrascano. It is very important to catch this disease early. I hope that you got the rash recently. If you did, then your lyme treatment has a very good chance of being successful.
Don't put off finding a lyme doctor because it is a time-consuming process, and good lyme doctors generally have long waiting times. So, start now. You will get the copy of your test before your appointment.
You have a lot to learn. Start reading.
Here is a post by a lyme doctor that explains the Western Blot:
You will see that he says it doesn't matter if you are positive on IgM or IgG. Lyme disease does not follow the general rules, so that is why either one means you are positive for lyme.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you TF, I will read everything you recommended. If I understood my doctor correctly, the health department told her something to the effect that I was Igenex positive and not Cdc positive. I realized I had not stated that originally, so, I edited my original message to include that it was Igenex positive. In that case, I would not be positive by states standards would I? Hence, why I am confused. I am going to read the links you sent now. Thank you so much!
posted
I just went to the Pictures link on this page. There were six pictures-three on top and three on the bottom. My rash was exactly like the far left one on the bottom row.
Posts: 47 | From wichita, kansas | Registered: Feb 2015
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posted
Does not matter if it's CDC positive or not. Be sure to read the link TF gave you. If you will post your results we can give you even more information.
Good job on finding your rash!!
A positive is a positive. Many have only the IgG or the IgM positive. Either way, it is positive.
There are also videos on the link I gave you. Check it all out.
PS .. You will have to travel for help. You have a very good DR available in MO. He got me well 10 yrs ago.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Thank you, Lymetoo, I had saved the pictures of my rash, so that made it easy. I will attempt to post the results when I receive them. Which forum should I post them under? This one?
Posts: 47 | From wichita, kansas | Registered: Feb 2015
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