posted
I am newly discovering chronic lymes. I am researching for my husband...self employed taxidermist. He has tested negative twice for lymes..but I am not giving up. * what is the recommended test for lymes? His symptoms started with painful, tight tendons. Not joints..not muscles...would start in the tendon. All over his body mostly hands, elbows, back of knees and feet. On 5/18 he woke up with a powerful ache in the back of neck...radiating up into his head and has been there since. We saw doctor (not L.literate?) on 5/25...he has scheduled MRI for 6/1. Last night pain got SO BAD I nearly ran him to E.R. This morning he is a fraction better....but I have a feeling he will be in bed all day. HELP!!?!??! I don't know where to turn or where to start!?!?!
Posts: 4 | From Eagle River Wisconsin | Registered: May 2011
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You can call them and order the test kit. Take it to your doctor and have him/her sign off on it. If he/she won't do that, then you will have to wait for an LLMD to do it.
Lyme does not have an "s" .. thanks!
Moving this to Medical Questions for more feedback.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, Igenex is a tick-borne disease specialty lab in California. It is the best for finding lyme disease and other tick-borne diseases.
Tests #188 and 189 will cost you about $200. You have to pay up front. You can file a claim with your insurance and may get a little back.
The Quest and LabCorp tests are practically useless. They miss about half of the cases of lyme disease. So, many, many people who have lyme disease test negative through these labs. Igenex will miss some people too. There just isn't a totally reliable test for this disease. So, a lyme doctor knows to diagnose the patient based on symptoms, not test results.
The best document to read to learn about this disease is the Burrascano lyme treatment guidelines found here:
Look at pages 9-10 where you will find a list of possible lyme symptoms. Mark all that he has.
You can find yourself a lyme literate doctor by going to "Support Groups" on the left side of the page and contacting a number of them, and also by posting in "Seeking a Doctor" part of this board and asking for the ones nearest you.
Some states don't have any lyme doctors, so people in those states have to travel a good distance to get good care.
A good lyme doctor will test the patient through Igenex at the first appointment, although a few use some other lab. Many test not only for lyme but for all of the co-infections (infections that you often get along with the lyme disease). If you test positive for any of these, that is another way of knowing you have lyme disease.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babs is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
Most people need only oral antibiotics. Only a few need to go on IV antibiotics.
I and my friends all got rid of lyme and company on orals only. All of us had lyme, babesiosis, and bartonella. Every person in Maryland who has lyme disease has at least these 3.
Also, a Boston TV station did a great show on lyme disease about 2 years ago. Here is the link to it: http://www.kettmann.com/Lyme/Save/
Then, click on "Here"
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.
Keep posting here and we will help you all we can. Good for you for finding LymeNet and thinking of lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you!!! And #1 lesson....take the "s" off Lyme!!! Thank you!
Posts: 4 | From Eagle River Wisconsin | Registered: May 2011
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
zipmyster, Taxidermist - really ! I just had 4/ 180 whitetails done. my life time achivements, (before lyme).. The lady whom done my work, found out i was - well, not myself, she went on to discribe the vertigo and pain she had been living in and it took 6 months longer to get my mounts back, cuz of it... then I mention Lyme disease as she live across a river from me, and wham guess who called me about testing as her, (one of my old ducks) told her she tested negitive and Lyme dont exsist here either...!@#$%^ wheu, I was bent. another bites the dust, told her of Igenex labs, and she is following Us Now, she mention all the ticks she deals with. hoping you and family find the path to treatment and healing, take heed to the elder members here and their wisdom. Great knowledge here.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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