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false positive for lyme disease?
My wife has had a swarm of medical issues this year dating back to January when she was diagnosed with melanoma. The melanoma was removed and a lymph node biopsy performed that showed the cancer had not spread. In July of this year she had a major root canal performed. Two weeks later she got a staff infection on her upper lip that took quite some time to treat. Shortly after that she noticed that she had swollen lymphnodes in her throat and numerous other symptoms. She went to the doctor and they noticed an enlarged lymphnode in her armpit. Due to her melanoma history they ordered a pet scan to see if she had lymphoma. The node on the armpit looked fine but the ones in the throat lit up on the scan. They didn't think it looked like cancer (more like a viral infection) but sent her to ENT to look at it. They pulled a sample from the lymphnode in her throat to test and told us five days later that the sample wasn't big enough to accurately test but didn't need another one because they are fairly convinced it isn't cancer. The doctor then decided to test for lyme disease. They sent a sample to the MAYO clinic and those results showed she tested positive for Epstein Bar disease and Lyme disease. They're telling us the lyme disease is a false positive due to epstein bar. I think they also said she has lymphomitosis due to the epstein bar. This has been drug out for a month now and she has been in a lot of pain. Jaw pain, joint pain, aches, cramps, shortness of breath etc. The doctor told her its epstein bar and there is no treatment and it should go away in a few months. She believes that the symptoms are those of lyme disease. From my research epstein bar symptoms are not as severe. She has trouble sleeping and has taken a lot of time off of work because she is always exhausted. We have decided to get a second opinion from the MAYO clinic in Rochester MN. What are some of your thoughts on this. Her main doctor is trying to figure out where to refer her to at MAYO. What are some questions to ask when we get there. How can it be confirmed that she doesn't have lyme?
PS: She doesn't recall having any ticks on her and hasn't spent a lot of time in the woods this summer. I, however do go in the woods often and have brought a tick home on at least one occasion so there is a risk of exposure there.
PS: She doesn't recall having any ticks on her and hasn't spent a lot of time in the woods this summer. I, however do go in the woods often and have brought a tick home on at least one occasion so there is a risk of exposure there.
Doxy has shown time and again to be the most effective drug at killing early Lyme. I don't know how long an LLMD would prescribe Zith for an early infection. I think Amoxicillin is actually the 2nd choice drug for early Lyme. My doc sometimes prescribes Zith along with another Lyme treating antibiotic for a combo therapy.
Is there an advantage to using the golden oldie favorite doxycycline over azithromycin?
Azithromycin can treat Lyme, but you don't mention how long your prescription is. The standard 5-day z-pack will not cure Lyme. I'd go for the 6 week approach, myself. Lyme has a 4 week cycle to it, so less than that is a high risk of relapse later. A Johns Hopkins study showed that about half of their patients treated with the standard 3 weeks of Doxy were still sick or sicker 6 months later, meaning that they failed the 3 week treatment.
Undertreating it in the beginning seems to make it harder to kill later. It also affects antibody prodution, making it more likely you'd test false negative later.
Undertreating it in the beginning seems to make it harder to kill later. It also affects antibody prodution, making it more likely you'd test false negative later.
Thank you Jackie for your tips....I have sent the note as you mentioned. I am on Zithromax right now for the strep and one doc I talked to said it would also take care of the lyme in an early stage.
Welcome to MedHelp Lyme --
The person you posted your message to, acat79, doesn't appear to have posted to this thread since Sept last year, but you may be able to reach him/her by sending a 'private message' through this website. To do that, hover your mouse over acat79 in the 'To' line of your message, and a box will open up. Click on 'send message' in that box, and you can send a private message to acat79 that will be automatically forwarded by the MedHelp system to acat79's private email address, if it is still in service.
About the rash behind your knee, I'd suggest you take a cell phone foto of the rash, with a ruler next to it, so you can show it to a doc later.
About taking antibiotics, no one here is medically trained, but taking antibiotics is often a good idea when there is a possibility of a tick bite. If not killed early, the bacteria spread through the body and are difficult to get rid of because they can hide in areas of low blood flow where the immune system doesn't easily reach to kill the bacteria.
Others here may have suggestions as well. Let us us know how we can help based on our experiences. Best wishes --
The person you posted your message to, acat79, doesn't appear to have posted to this thread since Sept last year, but you may be able to reach him/her by sending a 'private message' through this website. To do that, hover your mouse over acat79 in the 'To' line of your message, and a box will open up. Click on 'send message' in that box, and you can send a private message to acat79 that will be automatically forwarded by the MedHelp system to acat79's private email address, if it is still in service.
About the rash behind your knee, I'd suggest you take a cell phone foto of the rash, with a ruler next to it, so you can show it to a doc later.
About taking antibiotics, no one here is medically trained, but taking antibiotics is often a good idea when there is a possibility of a tick bite. If not killed early, the bacteria spread through the body and are difficult to get rid of because they can hide in areas of low blood flow where the immune system doesn't easily reach to kill the bacteria.
Others here may have suggestions as well. Let us us know how we can help based on our experiences. Best wishes --
I am being tested for Lyme in Dubuque, Ia currently and wonder what you have found out with the LLMD docs. I have a rash that has appeared and other symptoms which the doc said are likely associated with strep that I tested positive for (stomach pain, 102.7 temp), and the fever broke a day ago and stomach pain subsiding.
From what I read, even if the Lyme and Rocky Mtn Spotted Fever come back negative, it doesn't mean it is truly negative. I don't want to be overly concerned, but also don't want to wait for more serious symptoms to occur.
I have a 1" dia deep purple rash on the back of my knee. Started out as a blister and thought it was poison ivy.
It has gotten deeper purple but doesn't cause me any issues.
What is the risk of just going on a antibiotic 4-6 week program just in case?? I know antibiotics aren't good for long periouds, but maybe a good alternative??
Thanks in advance.
From what I read, even if the Lyme and Rocky Mtn Spotted Fever come back negative, it doesn't mean it is truly negative. I don't want to be overly concerned, but also don't want to wait for more serious symptoms to occur.
I have a 1" dia deep purple rash on the back of my knee. Started out as a blister and thought it was poison ivy.
It has gotten deeper purple but doesn't cause me any issues.
What is the risk of just going on a antibiotic 4-6 week program just in case?? I know antibiotics aren't good for long periouds, but maybe a good alternative??
Thanks in advance.
Those doctors mentioned are on the Internet and one has been a presenter at Lyme conferences. and on the radio/tv. I don't think they're 'secret'. It doesn't take much to find them, if someone wants to.
To acat----- I'm sorry you've seemed to inadvertently stepped into an ages long issue about whether to mention Lyme doctors names on a public forum----- at my request.
I've checked with DS and it IS o.k. to mention doctors names here as long as they aren't in the form of advertising.
Although many (mojo included) think this is wrong, I don't. What else are support groups for?-----a public place to help people and P.M.s don't fill the criteria of being 'public'----- sorta like a secret handshake.
My llmd avoided being censored for decades for his long term treatment of antibiotics---- simply by following evidence based medicine, taking copious notes and backing up all his decisions with science.
I would rather see medical boards censoring doctors for long term, ineffective treatments with supplements and herbs.
Again, I apologize to acat for any slur that might be aimed at you because of my action/request.
To acat----- I'm sorry you've seemed to inadvertently stepped into an ages long issue about whether to mention Lyme doctors names on a public forum----- at my request.
I've checked with DS and it IS o.k. to mention doctors names here as long as they aren't in the form of advertising.
Although many (mojo included) think this is wrong, I don't. What else are support groups for?-----a public place to help people and P.M.s don't fill the criteria of being 'public'----- sorta like a secret handshake.
My llmd avoided being censored for decades for his long term treatment of antibiotics---- simply by following evidence based medicine, taking copious notes and backing up all his decisions with science.
I would rather see medical boards censoring doctors for long term, ineffective treatments with supplements and herbs.
Again, I apologize to acat for any slur that might be aimed at you because of my action/request.
On this forum we don't mention doctors names unless they have written books or papers because many of these doctors are on the down low because their medical board in their state could come after them for treating Lyme.
Thanks.
Thanks.
Thank you------ of those three I'm inclined to lean towards Muth and Evenson. That's ONLY because I couldn't find much about Rosman (and Lyme) but doesn't mean she isn't just as good or better or worse. She may just keep her 'Lyme profile' under the radar.
Now, here are my suggestions:
Since all those practitioners are heavily steeped in alternative medicine it's up to any patient to decide if they want to be treated by antibiotic only or if they want to follow the doctor's suggestions about supplements/herbals.
IF abx is the way a patient wants to go----- then at the first appt. make sure that is made known to the doctor. And that long term abx is desired if 28 days isn't enough. How long? How aggressive (IV perhaps?)
Get those issues out of the way FIRST. Of course a practitioner can't/won't say at the beginning of tx what will happen----- but a good 'guess' should be given. Make sure it's understood, written in chart.
I went to a VERY alternative-type ND for treatment. But I got those questions cleared up first. And he was content to treat me long term with antibiotics.
Now, taking antibiotics doesn't mean that a few supplement or herbs should be avoided. It just depends on what they are. That's another subject for another time.
My very strong disclaimer-----I DON'T KNOW THOSE DOCTORS NOR HAVE I TALKED TO ANYONE WHO HAS GONE TO THEM. I can only go by what I read on the Internet and they do sound, at least, promising.
If a patient is willing to try supplements and herbs only to 'cure' Lyme then that's their prerogative. I wouldn't.
Now, here are my suggestions:
Since all those practitioners are heavily steeped in alternative medicine it's up to any patient to decide if they want to be treated by antibiotic only or if they want to follow the doctor's suggestions about supplements/herbals.
IF abx is the way a patient wants to go----- then at the first appt. make sure that is made known to the doctor. And that long term abx is desired if 28 days isn't enough. How long? How aggressive (IV perhaps?)
Get those issues out of the way FIRST. Of course a practitioner can't/won't say at the beginning of tx what will happen----- but a good 'guess' should be given. Make sure it's understood, written in chart.
I went to a VERY alternative-type ND for treatment. But I got those questions cleared up first. And he was content to treat me long term with antibiotics.
Now, taking antibiotics doesn't mean that a few supplement or herbs should be avoided. It just depends on what they are. That's another subject for another time.
My very strong disclaimer-----I DON'T KNOW THOSE DOCTORS NOR HAVE I TALKED TO ANYONE WHO HAS GONE TO THEM. I can only go by what I read on the Internet and they do sound, at least, promising.
If a patient is willing to try supplements and herbs only to 'cure' Lyme then that's their prerogative. I wouldn't.
The ILADS gave the following doctor's names : Mary Pat Rosman- Sumner IA, Debra Muth- WI and Jill Evenson - Janesville, WI.
get a test kit from igenex ,google it and get phone number that test is the gold standard for lyme
We'll wait to hear what llmd names they send you. I'll see if I can find one near you----- but since I don't live in the midwest I may not have the contacts. But I'll try.
I requested a llmd from Ilad yesterday and haven't heard anything. Anyone have a recommendation near Dubuque ia. Sw wi and nw Il are close as well. Thank you.
You wrote:
Here are all my symptoms: headaches, joint aches, swollen lymph nodes in neck, ear pain in and behind ear, jaw pain with some tooth pain, fatigue, dizziness (almost like a brain fog), some word-finding difficulties (could be related to fatigue), and some occasional tingling/numbness in arms, hands, and left side of face. All these symptoms are intermittent."
If I were a doctor (WHICH I'M NOT) I would say those symptoms could belong to a variety of diseases/condition.
If I were a person with Lyme and years of reading everything I can about Lyme and also thousands of peoples stories (WHICH I AM) I would say that the POSSIBILITY of you having Lyme is fairly high.
But until you get tested and evaluated by a GOOD llmd, who will first rule out any other diseases and who will test via Igenex labs then I would have to say "I don't know" if that's Lyme or not.
Lyme is not an easy disease to diagnose/treat. It's certainly not one with an easy answer. I'm sorry if that sounds rather brusque but it's a fact with this disease.
Here's another 'brusque' fact------- even if your valid test comes back negative it doesn't mean you don't have Lyme! I never got a positive WB but I definitely have/had Lyme!
THAT'S why you need a GOOD llmd. I got treated for Lyme because all other conditions were ruled out first by by llmd.
Another 'brusque' fact----- when you get a list of maybe three llmds from ILADS or LDA----- they might include the name or names of doctors whose only reason for being on that list is because they paid their dues to ILADS and and always because they're doctors I'd send anyone to for treatment.
When you get that list---- would you post their names here (it's allowed) or PM me with their names and I'll look into them and their mode of treating. One of them is a doctor who treats via light therapy-----and other strange methods. Others will treat by giving herbs and supplements ONLY.
Those are not doctors I would refer anyone to for science based treatment.
Re-read mojo's shorter reply above, please.
"Seeing an LLMD is the only way you can rule out Lyme with certainty by using IgeneX labs."
I only have to add----- see a valid, science based llmd.
Here are all my symptoms: headaches, joint aches, swollen lymph nodes in neck, ear pain in and behind ear, jaw pain with some tooth pain, fatigue, dizziness (almost like a brain fog), some word-finding difficulties (could be related to fatigue), and some occasional tingling/numbness in arms, hands, and left side of face. All these symptoms are intermittent."
If I were a doctor (WHICH I'M NOT) I would say those symptoms could belong to a variety of diseases/condition.
If I were a person with Lyme and years of reading everything I can about Lyme and also thousands of peoples stories (WHICH I AM) I would say that the POSSIBILITY of you having Lyme is fairly high.
But until you get tested and evaluated by a GOOD llmd, who will first rule out any other diseases and who will test via Igenex labs then I would have to say "I don't know" if that's Lyme or not.
Lyme is not an easy disease to diagnose/treat. It's certainly not one with an easy answer. I'm sorry if that sounds rather brusque but it's a fact with this disease.
Here's another 'brusque' fact------- even if your valid test comes back negative it doesn't mean you don't have Lyme! I never got a positive WB but I definitely have/had Lyme!
THAT'S why you need a GOOD llmd. I got treated for Lyme because all other conditions were ruled out first by by llmd.
Another 'brusque' fact----- when you get a list of maybe three llmds from ILADS or LDA----- they might include the name or names of doctors whose only reason for being on that list is because they paid their dues to ILADS and and always because they're doctors I'd send anyone to for treatment.
When you get that list---- would you post their names here (it's allowed) or PM me with their names and I'll look into them and their mode of treating. One of them is a doctor who treats via light therapy-----and other strange methods. Others will treat by giving herbs and supplements ONLY.
Those are not doctors I would refer anyone to for science based treatment.
Re-read mojo's shorter reply above, please.
"Seeing an LLMD is the only way you can rule out Lyme with certainty by using IgeneX labs."
I only have to add----- see a valid, science based llmd.
Please see my answer above. Your symptoms are classic lyme symptoms.
Lyme is not a false positive as in my own case with my EBV. I am very happy you are searching for a Lyme specialist. You can also google your state and LLMD and see what comes up.
Seeing an LLMD is the only way you can rule out Lyme with certainty by using IgeneX labs. .
Keep us posted ok? Best of luck!
Lyme is not a false positive as in my own case with my EBV. I am very happy you are searching for a Lyme specialist. You can also google your state and LLMD and see what comes up.
Seeing an LLMD is the only way you can rule out Lyme with certainty by using IgeneX labs. .
Keep us posted ok? Best of luck!
Hi All,
My husband wrote the previous post regarding myself with possible lyme's disease. Here are all my symptoms: headaches, joint aches, swollen lymph nodes in neck, ear pain in and behind ear, jaw pain with some tooth pain, fatigue, dizziness (almost like a brain fog), some word-finding difficulties (could be related to fatigue), and some occasional tingling/numbness in arms, hands, and left side of face. All these symptoms are intermittent. What are your thoughts? We are going to be searching for a Lyme specialist. I was positive for EBV and lyme. They're saying lyme is a false-positive, but I won't feel okay until I know for sure it's negative. Thanks!!
My husband wrote the previous post regarding myself with possible lyme's disease. Here are all my symptoms: headaches, joint aches, swollen lymph nodes in neck, ear pain in and behind ear, jaw pain with some tooth pain, fatigue, dizziness (almost like a brain fog), some word-finding difficulties (could be related to fatigue), and some occasional tingling/numbness in arms, hands, and left side of face. All these symptoms are intermittent. What are your thoughts? We are going to be searching for a Lyme specialist. I was positive for EBV and lyme. They're saying lyme is a false-positive, but I won't feel okay until I know for sure it's negative. Thanks!!
I'm sorry your wife has had such terrible problems and will keep a good thought for her that the cancer is gone is will stay away; l'm sure you have a good oncologist who will keep her on his/her radar.
To the question about Lyme and testing. You asked:
" Her main doctor is trying to figure out where to refer her to at MAYO. What are some questions to ask when we get there. How can it be confirmed that she doesn't have lyme? "
I assume you mean by 'main doctor' you mean her Primary Care physician? Assuming that's right------- try the best you can to NOT have her sent to MAYO for anything about Lyme disease. (Other conditions, they're probably o.k.-----NOT LYME)
The reason I'm saying that is very complicated and fraught with medical politics---- not to mention the difficulty inherent in diagnosing and treating Lyme.
MAYO uses a 2 tier system for testing Lyme---- an ELISA then, if positive a Western Blot, IgM and IgG. That ELISA is somewhere between 40% to 75% erroneous OVERALL.
Please read:
http://www.angelfire.com/me2/StarShar/Spiros.html
And anything else you can read written by Tom Grier: Here is another article:
"In one year-long study by Dr. Sam Donta, MD, done on chronic Lyme patients, the initial ELISA tests proved to be more than 66+% inaccurate (1996 LDF Conference lecture). Other researchers have also found the ELISA tests to be inaccurate. Using a 45-panel diagnostic testing protocol from the NIH for testing the efficacy of the ELISA and Western Blot, researchers found the accuracy of the Lyme ELISA varied from about 5075%, and were routinely inconsistent. The CDC's ELISA test did no better on average than any other ELISA. It is the CDC ELISA test which is used for surveillance of emerging Lyme disease in the United States, yet the test was correct only about two out every three tests. Too often, a single negative ELISA test can prevent a sick patient from getting treatment, even despite having serious symptoms! "
https://sites.google.com/site/floridalyme/lab-tests/tests--tom-grier
In your wife's case, because of her cancer----- and perhaps an immuno-incompentent status----- who knows what may or may not skew the results.
Final opinion (mine and many others)---- find a doctor who doesn't blindly follow the IDSA's guidelines (Infectious Disease Society of America) which are a bunch of crap.
After reading my reply you may groan and wonder what's the deal? Your wife has survived a very serious condition. The last thing she needs is to have a disease that, although not as seriously life-threatening usually, can condemn many people to a life of suffering.
Now----- you'll need to ask a LOT more questions---- like where to find a doctor that will test and treat Lyme properly. That also has a can of worms associated with it. :( I see you're in IA. If you're at all interested I might be able to find you some contacts that life in IA and have Lyme.
I'm so sorry that after a horrible experience with cancer your wife, and you, also have to contend with a ''mystery disease'' and one where mis- and dis- information abounds.
Please get back to us.
To the question about Lyme and testing. You asked:
" Her main doctor is trying to figure out where to refer her to at MAYO. What are some questions to ask when we get there. How can it be confirmed that she doesn't have lyme? "
I assume you mean by 'main doctor' you mean her Primary Care physician? Assuming that's right------- try the best you can to NOT have her sent to MAYO for anything about Lyme disease. (Other conditions, they're probably o.k.-----NOT LYME)
The reason I'm saying that is very complicated and fraught with medical politics---- not to mention the difficulty inherent in diagnosing and treating Lyme.
MAYO uses a 2 tier system for testing Lyme---- an ELISA then, if positive a Western Blot, IgM and IgG. That ELISA is somewhere between 40% to 75% erroneous OVERALL.
Please read:
http://www.angelfire.com/me2/StarShar/Spiros.html
And anything else you can read written by Tom Grier: Here is another article:
"In one year-long study by Dr. Sam Donta, MD, done on chronic Lyme patients, the initial ELISA tests proved to be more than 66+% inaccurate (1996 LDF Conference lecture). Other researchers have also found the ELISA tests to be inaccurate. Using a 45-panel diagnostic testing protocol from the NIH for testing the efficacy of the ELISA and Western Blot, researchers found the accuracy of the Lyme ELISA varied from about 5075%, and were routinely inconsistent. The CDC's ELISA test did no better on average than any other ELISA. It is the CDC ELISA test which is used for surveillance of emerging Lyme disease in the United States, yet the test was correct only about two out every three tests. Too often, a single negative ELISA test can prevent a sick patient from getting treatment, even despite having serious symptoms! "
https://sites.google.com/site/floridalyme/lab-tests/tests--tom-grier
In your wife's case, because of her cancer----- and perhaps an immuno-incompentent status----- who knows what may or may not skew the results.
Final opinion (mine and many others)---- find a doctor who doesn't blindly follow the IDSA's guidelines (Infectious Disease Society of America) which are a bunch of crap.
After reading my reply you may groan and wonder what's the deal? Your wife has survived a very serious condition. The last thing she needs is to have a disease that, although not as seriously life-threatening usually, can condemn many people to a life of suffering.
Now----- you'll need to ask a LOT more questions---- like where to find a doctor that will test and treat Lyme properly. That also has a can of worms associated with it. :( I see you're in IA. If you're at all interested I might be able to find you some contacts that life in IA and have Lyme.
I'm so sorry that after a horrible experience with cancer your wife, and you, also have to contend with a ''mystery disease'' and one where mis- and dis- information abounds.
Please get back to us.
I am sorry to burst your bubble because you are trying so hard but the mayo clinic is not going to do anything except spend your money.
In actuality the positive Lyme and EBV are very common. The EBV is positive from the Lyme. If you want to save time and money that most of us have been through you need to find a Lyme literate Dr (LLMD )
Most of us dont remember a tick bite or never got a rash. Many of us have gone from dr to dr, misdiagnosed at every turn. An LLMD uses a special lab called IgeneX which is more sensitive then mainstream labs. To find an LLMD near you, go to ILADS.org, its our association. Contact them an ask for an LLMD near you.
You would think these famous health centers would know but they don't. For example I was misdiagnosed with MS,Lupus, EBV, CFS, and more.
You are doing the right thing being proactive and asking us.
I am sure you will have more questions which we will be happy to answer.
In actuality the positive Lyme and EBV are very common. The EBV is positive from the Lyme. If you want to save time and money that most of us have been through you need to find a Lyme literate Dr (LLMD )
Most of us dont remember a tick bite or never got a rash. Many of us have gone from dr to dr, misdiagnosed at every turn. An LLMD uses a special lab called IgeneX which is more sensitive then mainstream labs. To find an LLMD near you, go to ILADS.org, its our association. Contact them an ask for an LLMD near you.
You would think these famous health centers would know but they don't. For example I was misdiagnosed with MS,Lupus, EBV, CFS, and more.
You are doing the right thing being proactive and asking us.
I am sure you will have more questions which we will be happy to answer.
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