posted
Hi, I am very confused about Lyme testing and would like clarification if possible. Diagnosed with Lyme (Erythema migrans) 1993. Tested positive with Western Blot. Was treated by Dr in Phila. Oral failed. IV antibiotics for long periods over next 2-3 years. Saw second Dr in Long Island, again tested positive. Treated by him for about a year IV. Symptoms continued at times worse than others. Finally while still symptomatic gave up and was just followed by primary care Dr. (More of same followed) Finally feeling worse again saw Dr in Gettysburg 2006 who states I do not have Active Lyme and will probably just have to live with what I have now. In Aug. developed new symptoms Encephalapathy had several tests including one for Lyme. Neurologist now states my test was negative for Lyme. When I questioned him as to why years of Testing was positive and now it is not, he stated I never had Lyme or my test would have remained positive. He asked if my earlier tests were done at Igenex and indicated thats why my tests were positive. Like they were doctoring results. So I am confused. Has anyone heard anything about Igenex? Also, does anyone know if a positive test for 10 yrs or more can turn negative and does that mean I never had Lyme. All these years being told I had chronic Lyme and all the treatments, including a picc line and 2 portacaths was for nothing? Appreciate any thoughts on this subject. Sorry its so long. Thank you.
Posts: 2 | From Hanover, PA | Registered: Nov 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
To get your education on lyme disease, study this document:
Dr. Burrascano was the lyme disease pioneer and foremost lyme doctor in the world until he retired a few years ago.
Notice on page 6 that the em rash is diagnostic of lyme. So, you have had lyme since 1993.
Notice that Burrascano says that no lyme test is reliable enough to tell you that you DO NOT have lyme now.
Lyme tests often miss half of the people with lyme. So, a negative test means nothing.
Regular doctors are always trying to say that Igenex gives too many positive lyme tests. The truth is, Burrascano always recommended Igenex any time I heard him speak. Igenex is a reference lab which is what Burrascano always said to use. It specializes in tick borne diseases. Tests from Quest and LabCorp are practically useless.
Do you know about the major medical controversy surrounding lyme disease? There are 2 camps. One camp (the majority of doctors) believes that lyme is rare and easily cured. The doctors you are talking to now are obviously in this camp.
The other camp knows that lyme is worse than an epidemic and that lyme is very difficult to cure.
Your lyme treatment was not for nothing. You need to find a doctor who specializes in lyme treatment and who can treat you for all the diseases the tick bite gave you. If you were never treated for coinfections, that is likely why your lyme treatment failed.
In our area (Maryland, PA, Va, etc.) nearly every person with lyme also has babesiosis and bartonella. If you don't eradicate all of the diseases the tick gave you, you can't get rid of the lyme. Read it in Burrascano.
There are some great lyme doctors in the Baltimore/Washington area. And, some will do telephone appointments after the first in-person appointment. So, I recommend you consider going to a top notch lyme doctor and do all you can to regain your health.
I had undiagnosed lyme disease and babesiosis and bartonella for at least 10 years. I had to search around and go through a few doctors before I found one who knew enough to cure me.
I got rid of my diseases over 7 years ago and I have a normal life. Don't pay attention to these doctors who put down Igenex and trust their negative lyme test. Get to a doctor recommended by lyme support groups and lyme patients and your confusion will be gone.
If you want the names of doctors I recommend, just tell me and I will send them to you.
In order to write to you by private message, you first need to enable the private message function. Go into "my profile" near top of the page. Then, hit "edit profile." Then, put a check next to "enable private messaging." Once you do that, a little icon will appear above your posts that lets us know we can write to you privately.
We do not give the names of the lyme doctors on the public board. This is to protect the doctors who treat lyme from persecution by the "other camp."
Good for you for finding LymeNet. We will help you here as much as we can.
Try to keep paragraphs very short--2-3 lines at most. Many with lyme cannot read a post that has long paragraphs like yours. Make your posts look more like mine, and you will get more responses.
Posts: 9931 | From Maryland | Registered: Dec 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Those treatments probably kept you alive, if not cured. For some of us, that is the best it gets.
Doctors who ignore an EM rash and symptoms of lyme and who tell you just to live with poor health cannot be trusted.
The trouble is that the tests you had were antibody tests. These are indirect and will be negative if your body no longer produces antibodies. This does happen, especially to people who have had lyme a long time. Their immune system is just not up for the job after years of coping with an immune evading disease. But there are also labs that don't do a good job even if there are still antibodies. And the tests do not find all the strains that are there either. Lots of reasons for negative tests.
If you had an EM rash and never stopped having symptoms since then, you still have lyme. But back then, there was less knowledge about the coinfections and therefore no treatment. So, you may have acquired bartonella, babesia, or others. These require different meds than lyme.
And by the way, there is a support group not that far from you. Would be good for you to find them. Here is the list for your state. I don't think the Gettysburg group is still active, but York probably is. Unfortunately the support group listing here is not kept up to date. Anyway, pick out the closest and keep trying until you find one that is active.
posted
[QUOTE]Originally posted by samm54: [QB] Hi, I am very confused about Lyme testing and would like clarification if possible.
Diagnosed with Lyme (Erythema migrans) 1993. Tested positive with Western Blot. Was treated by Dr in Phila. Oral failed. IV antibiotics for long periods over next 2-3 years.
Saw second Dr in Long Island, again tested positive. Treated by him for about a year IV. Symptoms continued at times worse than others.
Finally while still symptomatic gave up and was just followed by primary care Dr. (More of same followed)
Finally feeling worse again saw Dr in Gettysburg 2006 who states I do not have Active Lyme and will probably just have to live with what I have now.
In Aug. developed new symptoms Encephalapathy had several tests including one for Lyme. Neurologist now states my test was negative for Lyme. When I questioned him as to why years of Testing was positive and now it is not, he stated I never had Lyme or my test would have remained positive.
He asked if my earlier tests were done at Igenex and indicated thats why my tests were positive. Like they were doctoring results. So I am confused. Has anyone heard anything about Igenex?
Also, does anyone know if a positive test for 10 yrs or more can turn negative and does that mean I never had Lyme.
All these years being told I had chronic Lyme and all the treatments, including a picc line and 2 portacaths was for nothing? Appreciate any thoughts on this subject. Sorry its so long. Thank you.
Breaking this up for easier reading for many here.
Ditto to what TF and Samm said.
IGeneX is a CLIA-certified lab, meaning it's fine. The antibody tests don't always come back positive even though we may have Lyme.
There is finally a lab that can test for the actual bacteria itself, in PA - Advanced Laboratory Services. But you don't need to do that - you had an EM rash, with plenty of symptoms.
I don't think you need a neuropsych workup - we know Lyme affects the brain - what you need is a Lyme-treating physician!
Posts: 13117 | From San Francisco | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
OK. I sent you names of doctors and lots of information. You are on your way!
Posts: 9931 | From Maryland | Registered: Dec 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Not sure if it makes a difference whether the person administering the neuropsych exam is familiar with lyme. But there are psychiatrists in PA and NJ that are lyme literate.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
HI, I am new to researching Lyme and this forum. I first got Lymes back in 2007 or 2008. never had a rash but developed severely achy joints, extreme fatigue and one day my hands swelled up so I askeda dr (didn't have a primary) to test me for Lymes. He did not do a Western blot and the result was negative so I thought I was crazy. A year and a half later I was still in terrible pain and fatigue so I found a good primary who ordered the western blot which was positive. I did 3 courses of antibiotics and started feeling better (not great) so i just went on my way. I still have not felt good so I had another round of blood test which were positive for IGM 41, 23, 39 and monocytes. IGGs were negative. Any suggestions on LLD in NJ area? I am guessing I may be considered a chronic Lymes patient now (ongoing pain feet knees hips, fatigue, I am researching as much as I can now.
Posts: 3 | From New Jersey | Registered: Nov 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi, dci65, and welcome to LymeNet. Yes, you are a chronic lyme patient now.
I saw that you tagged on to someone else's post in Seeking a Doctor. Your request will not be seen that way.
There are people who watch the Seeking posts, looking for new posts so that they can answer them. So, to get their attention, start a new post asking for a doctor.
Just go to the top of the screen and hit "Post New Topic" and then post the same thing you posted before.
Good for you for asking for a doc here. A good lyme doc will treat you until you are back to normal, no matter how long that takes. Since you have had lyme for a number of years now, that could take 2 years or more. But, it is well worth it to get your life back.
I had undiagnosed lyme disease (and babesiosis and bartonella also) for at least 10 years before a doctor thought to test me for lyme. Still, I got rid of this disease over 7 years ago. I did it by finding a lyme doctor who follows the Burrascano protocol--the most used and most successful protocol in the world.
Read it and study it to get your education on this disease.
Be willing to travel out of state to get a good doc. If you are willing to travel to D.C., we have a top notch lyme doctor there. You can take the train and get there with little effort. After the first appointment, you can have telephone appointments monthly, so you won't have to travel there every month.
Let me know if you want the name. People are raving about this doc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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