Aa
PCR question - please help if you can
Hi all,
I won't bore you with all of my issued but abruptly in Nov. 2014, I experienced neurological issues: started with eye twitching in both eyes, mild numbness in left side of face, left arm and left foot. A week or two later, it got very bad -deep fatigue, twitching muscles on both sides, extreme weakness in my left arm and left leg, trouble swallowing, extreme headaches and painful, burning stiff neck. After two weeks of that, I am left with only mild weakness in left side, "buzzing" in left foot and leg (starting to migrate to right foot), twitching eyes, ringing in my ears, and when things flare up (as it waxes and wanes), a red rash around my eyes on both sides. Notably, I have swollen lymph glands on the left side of my neck only.
These symptoms resulted in multiple tests, for MS, among other things. the MRI shows small, nonenhancing lesions on my brain (less than 3 cm, about 11 in number), but all other MS tests came back normal (lumbar puncture, evoked potentials). Other inflammatory diseases and LP tests were normal, too.
The reason I'm posting here is that in April 2014 (7 months before my symptoms came on) I found a deer tick in my skin. Had been there from 12-24 hours. Had a prophylactic dose of antibiotics (2 pills) at that time. Since then, two regular blood tests have come back negative for Lyme, Western Blot came back negative for lyme, and PCR of my spinal fluid came back negative. I had all but written off Lyme as the culprit but everyone and their mother keeps telling me it is lyme (except for my neurologist and PCP, who think it is not based on the tests). What has me hung up is that since the first episode (and currently), my lymph nodes are swollen. It tells me it is an infection, not MS. But I just don't know.
My questions:
(1) do my symptoms sound like lyme?
(2) does the fact that ALL of my lyme tests are negative mean I don't have lyme (in particular, the PCR seems to be 'cutting edge' and I put a lot of weight in that);
(3) is IGeneX, Inc. the real deal, and if so, should I pay to have that test done?
I appreciate any help you can give. The people in this forum seem to be more knowledgeable than my docs on lyme. Thanks for helping - I'm a younger guy with two very young kids, so this is all very distressing and I am thankful for any help you can give.
I won't bore you with all of my issued but abruptly in Nov. 2014, I experienced neurological issues: started with eye twitching in both eyes, mild numbness in left side of face, left arm and left foot. A week or two later, it got very bad -deep fatigue, twitching muscles on both sides, extreme weakness in my left arm and left leg, trouble swallowing, extreme headaches and painful, burning stiff neck. After two weeks of that, I am left with only mild weakness in left side, "buzzing" in left foot and leg (starting to migrate to right foot), twitching eyes, ringing in my ears, and when things flare up (as it waxes and wanes), a red rash around my eyes on both sides. Notably, I have swollen lymph glands on the left side of my neck only.
These symptoms resulted in multiple tests, for MS, among other things. the MRI shows small, nonenhancing lesions on my brain (less than 3 cm, about 11 in number), but all other MS tests came back normal (lumbar puncture, evoked potentials). Other inflammatory diseases and LP tests were normal, too.
The reason I'm posting here is that in April 2014 (7 months before my symptoms came on) I found a deer tick in my skin. Had been there from 12-24 hours. Had a prophylactic dose of antibiotics (2 pills) at that time. Since then, two regular blood tests have come back negative for Lyme, Western Blot came back negative for lyme, and PCR of my spinal fluid came back negative. I had all but written off Lyme as the culprit but everyone and their mother keeps telling me it is lyme (except for my neurologist and PCP, who think it is not based on the tests). What has me hung up is that since the first episode (and currently), my lymph nodes are swollen. It tells me it is an infection, not MS. But I just don't know.
My questions:
(1) do my symptoms sound like lyme?
(2) does the fact that ALL of my lyme tests are negative mean I don't have lyme (in particular, the PCR seems to be 'cutting edge' and I put a lot of weight in that);
(3) is IGeneX, Inc. the real deal, and if so, should I pay to have that test done?
I appreciate any help you can give. The people in this forum seem to be more knowledgeable than my docs on lyme. Thanks for helping - I'm a younger guy with two very young kids, so this is all very distressing and I am thankful for any help you can give.
Anaplasma doesn't typically result in any obvious symptoms in itself. Usually not much of a problem, it's just easier to pick up on than the other infections. And there is a lot of overlap. It was probably an underlying coinfection or Lyme that was creating the symptoms.
Interesting maryteresa. What symptoms did you have? What is anaplasmosis? Thank you all for your help. The tick bite seems too much of a coincidence to be nothing, but it is very difficult to depart from traditional very good doctors that I trust who tell m if all tests came back negative, I should not pump myself full of antibiotics. It's so confusing.
Interesting maryteresa. What symptoms did you have? What is anaplasmosis? Thank you all for your help. The tick bite seems too much of a coincidence to be nothing, but it is very difficult to depart from traditional very good doctors that I trust who tell m if all tests came back negative, I should not pump myself full of antibiotics. It's so confusing.
A lot of your symptoms are similar when I was first diagnosed with Anaplasmosis and later with Lyme. Sounds like a co-infection. I also tested negative for Lyme on western blot but had a C6 peptide test which confirmed Lyme
theres one strains that is carried by the body louse:borrelia reccurentis, so borrelia can be more common than you think, since the body louse is probably more infectious or infestation is much easier for the body louse.
===============continued from previous message pane=========
You say: "(2) does the fact that ALL of my lyme tests are negative mean I don't have lyme (in particular, the PCR seems to be 'cutting edge' and I put a lot of weight in that);" In my non-medical opinion: No. As said above, Lyme does not often hang out in the spinal fluid, but if you have a PCR done on your *blood*, you are more likely to have an accurate result.
You say: "(3) is IGeneX, Inc. the real deal, and if so, should I pay to have that test done?" I was tested at IGeneX, as was a family member, and they are quite good. We were both diagnosed with Lyme and a co-infection [babesiosis] and treated with antibiotics for a period of months. I forget how long exactly, but it was ~6-8 months. Not days, not weeks: months (for reasons stated above. But you need a doc who can read the tests properly. IGeneX does not rely on your [potentially suppressed] immune system as the Western blot and ELISA tests do, and so is more likely to give an accurate result.
Will stop here now, but were I you, I would not wait: Lyme can be sexually transmitted and is in the same bacterial group as syphilis. If you have ever read about what happens in syphilitic dementia, or to babies born of those with syphilis, you will understand the concern. Lyme does not go away by itself. Before the discovery of effective antibiotics, insane asylums were filled with those who had syphilitic dementia. Not good.
Best wishes -- let us know how you do, okay? We beat Lyme; you can too. Keep us posted!
You say: "(2) does the fact that ALL of my lyme tests are negative mean I don't have lyme (in particular, the PCR seems to be 'cutting edge' and I put a lot of weight in that);" In my non-medical opinion: No. As said above, Lyme does not often hang out in the spinal fluid, but if you have a PCR done on your *blood*, you are more likely to have an accurate result.
You say: "(3) is IGeneX, Inc. the real deal, and if so, should I pay to have that test done?" I was tested at IGeneX, as was a family member, and they are quite good. We were both diagnosed with Lyme and a co-infection [babesiosis] and treated with antibiotics for a period of months. I forget how long exactly, but it was ~6-8 months. Not days, not weeks: months (for reasons stated above. But you need a doc who can read the tests properly. IGeneX does not rely on your [potentially suppressed] immune system as the Western blot and ELISA tests do, and so is more likely to give an accurate result.
Will stop here now, but were I you, I would not wait: Lyme can be sexually transmitted and is in the same bacterial group as syphilis. If you have ever read about what happens in syphilitic dementia, or to babies born of those with syphilis, you will understand the concern. Lyme does not go away by itself. Before the discovery of effective antibiotics, insane asylums were filled with those who had syphilitic dementia. Not good.
Best wishes -- let us know how you do, okay? We beat Lyme; you can too. Keep us posted!
Greetings --
Good for you for continuing to figure out what's going on. Here's my take, fwiw -- I'm not medically trained but have danced with Devil Lyme and one of his little friends (babesiosis, which is similar to malaria).
=== You say: "Had a prophylactic dose of antibiotics (2 pills) at that time. Since then, two regular blood tests have come back negative for Lyme, Western Blot came back negative for lyme, and PCR of my spinal fluid came back negative." Two pills is not much. Seems odd that the doc would stop there; even an earache gets 10-14 days of antibiotics.
=== You say: "I had all but written off Lyme as the culprit but everyone and their mother keeps telling me it is lyme (except for my neurologist and PCP, who think it is not based on the tests)." Neuros are among the most strident Lyme-deniers. PCPs can be good or bad, but you never know how Lyme-savvy they are: ALL docs think they are right or they would not say what they do, whether pro or anti Lyme.
=== You say: "What has me hung up is that since the first episode (and currently), my lymph nodes are swollen. It tells me it is an infection, not MS. But I just don't know." I don't know whether MS manifests as swollen lymph nodes, but I would be inclined first to chase down whether you have Lyme and any co-infections before trying to determine if you have MS. It's a whole different ballgame. The sooner Lyme and any co-infections are identified and treated, the better. Delaying Lyme etc. testing and consideration to try to nail down MS just gives the Lyme etc. a longer time to dig in.
=== "The reason I'm posting here is that in April 2014 (7 months before my symptoms came on) I found a deer tick in my skin. Had been there from 12-24 hours. Had a prophylactic dose of antibiotics (2 pills) at that time." As mentioned above, 2 pills is not what I understand to be a usual dose: 10-14 days minimum is more like it, or even longer. Why? Because bacteria are most susceptible to antibiotics when their outer coating is disrupted during cell reproduction, when the cell wall is split to make two bacteria out of one.
=== "Since then, two regular blood tests have come back negative for Lyme, Western Blot came back negative for lyme" Western blot is not wholly accurate and can miss many cases of Lyme. Why? Because the 'regular' tests look not for the Lyme bacteria themselves, but instead look for your immune system's reaction to the presence of the Lyme bacteria. That would work okay, EXCEPT that Lyme bacteria have the ability to suppress your immune system's reaction to the presence of Lyme. Why is that a problem? Because the old standard tests (Western blot and ELISA) look not for the Lyme bacteria in your body, but for your immune system's reaction to the presence of the Lyme bacteria.
That is: Western blot and ELISA are helpful when the tests are positive, but when they are negative, they could well be wrong.
=== You say, "PCR of my spinal fluid came back negative." PCR is good, because it looks for Lyme bacteria DNA in your body. Unlike Western blot and ELISA tests, PCR testing [short for polymerase chain reaction] is not affected by your immune system. But here's the problem: Lyme bacteria are not always (or even often) present in spinal fluid! It's like the old joke about a drunk who is crawling around on the ground under a street light looking for his keys, and when asked why he's looking there but not elsewhere, he says, "Because the light is better under the street lamp."
You say: "I had all but written off Lyme as the culprit but everyone and their mother keeps telling me it is lyme (except for my neurologist and PCP, who think it is not based on the tests)." Word of warning: neurologists are some of the greatest Lyme deniers around.
"What has me hung up is that since the first episode (and currently), my lymph nodes are swollen. It tells me it is an infection, not MS. But I just don't know." I would agree with you.
"My questions:
"(1) do my symptoms sound like lyme?"
--- They sound sufficiently Lyme-like that I would see a Lyme specialist without delay. An MD who is a member of the voluntary group ILADS (International Lyme and Associated Diseases Society) is a good place to start looking for a doc who really understands Lyme. There is no test to join ILADS, so some of the docs may be off the beam a bit, but it's a good place to start. Also look for Lyme patient groups near you -- you can often get good data that way.
===============continued in next message pane==============
Good for you for continuing to figure out what's going on. Here's my take, fwiw -- I'm not medically trained but have danced with Devil Lyme and one of his little friends (babesiosis, which is similar to malaria).
=== You say: "Had a prophylactic dose of antibiotics (2 pills) at that time. Since then, two regular blood tests have come back negative for Lyme, Western Blot came back negative for lyme, and PCR of my spinal fluid came back negative." Two pills is not much. Seems odd that the doc would stop there; even an earache gets 10-14 days of antibiotics.
=== You say: "I had all but written off Lyme as the culprit but everyone and their mother keeps telling me it is lyme (except for my neurologist and PCP, who think it is not based on the tests)." Neuros are among the most strident Lyme-deniers. PCPs can be good or bad, but you never know how Lyme-savvy they are: ALL docs think they are right or they would not say what they do, whether pro or anti Lyme.
=== You say: "What has me hung up is that since the first episode (and currently), my lymph nodes are swollen. It tells me it is an infection, not MS. But I just don't know." I don't know whether MS manifests as swollen lymph nodes, but I would be inclined first to chase down whether you have Lyme and any co-infections before trying to determine if you have MS. It's a whole different ballgame. The sooner Lyme and any co-infections are identified and treated, the better. Delaying Lyme etc. testing and consideration to try to nail down MS just gives the Lyme etc. a longer time to dig in.
=== "The reason I'm posting here is that in April 2014 (7 months before my symptoms came on) I found a deer tick in my skin. Had been there from 12-24 hours. Had a prophylactic dose of antibiotics (2 pills) at that time." As mentioned above, 2 pills is not what I understand to be a usual dose: 10-14 days minimum is more like it, or even longer. Why? Because bacteria are most susceptible to antibiotics when their outer coating is disrupted during cell reproduction, when the cell wall is split to make two bacteria out of one.
=== "Since then, two regular blood tests have come back negative for Lyme, Western Blot came back negative for lyme" Western blot is not wholly accurate and can miss many cases of Lyme. Why? Because the 'regular' tests look not for the Lyme bacteria themselves, but instead look for your immune system's reaction to the presence of the Lyme bacteria. That would work okay, EXCEPT that Lyme bacteria have the ability to suppress your immune system's reaction to the presence of Lyme. Why is that a problem? Because the old standard tests (Western blot and ELISA) look not for the Lyme bacteria in your body, but for your immune system's reaction to the presence of the Lyme bacteria.
That is: Western blot and ELISA are helpful when the tests are positive, but when they are negative, they could well be wrong.
=== You say, "PCR of my spinal fluid came back negative." PCR is good, because it looks for Lyme bacteria DNA in your body. Unlike Western blot and ELISA tests, PCR testing [short for polymerase chain reaction] is not affected by your immune system. But here's the problem: Lyme bacteria are not always (or even often) present in spinal fluid! It's like the old joke about a drunk who is crawling around on the ground under a street light looking for his keys, and when asked why he's looking there but not elsewhere, he says, "Because the light is better under the street lamp."
You say: "I had all but written off Lyme as the culprit but everyone and their mother keeps telling me it is lyme (except for my neurologist and PCP, who think it is not based on the tests)." Word of warning: neurologists are some of the greatest Lyme deniers around.
"What has me hung up is that since the first episode (and currently), my lymph nodes are swollen. It tells me it is an infection, not MS. But I just don't know." I would agree with you.
"My questions:
"(1) do my symptoms sound like lyme?"
--- They sound sufficiently Lyme-like that I would see a Lyme specialist without delay. An MD who is a member of the voluntary group ILADS (International Lyme and Associated Diseases Society) is a good place to start looking for a doc who really understands Lyme. There is no test to join ILADS, so some of the docs may be off the beam a bit, but it's a good place to start. Also look for Lyme patient groups near you -- you can often get good data that way.
===============continued in next message pane==============
Not able to read all the responses above due to vision issues but some of your symptoms sound like the Co-infection Bartonella. For me, this is worse than the Lyme. A good LLMD could give you a clinical diagnoses if he thinks you have a co-infection and start treating.
No problem, you are very welcome. Groups like these are VERY helpful indeed.
After I figured out I had Lyme for myself, I immediately made an appointment with an LLMD. I bypassed all the mess of mainstream medicine as I was so unbelievably exhausted and just knew it wouldn't get me anywhere. I went to ONE walk in clinic doctor to get a free Lyme test and routine labs, should have known he would have done an ELISA. But I didn't know much about Lyme at the time. He had a masters in public health, yet acted like he had never heard of such disease. So I ordered my own LabCorp western blot myself (not very good, but better than an ELISA), which came back completely negative. It's tough to make a decision on getting a non LLMD involved in the Lyme issue because not only is testing a challenge, treatment is as well. You have a better chance at testing positive if you treat with susceptible antibiotics for a while prior to the test.
My LLMD treated me for six months before I had my IGenex. And it was CDC positive! I have treated with a lot of different oral treatments over 18 months now, and I cannot say that I have made progress... But some do. I have probably been infected for 30 years and prior immunosuppressants (which is a big no-no with Lyme), so obviously I'm really sick. I have a lot of coinfections, which complicates things even further.
There are some that can take an IGenex and come up positive without provoking with antibiotics. If that is your only choice and you have the money, I'd say go for it. You haven't been infected too long, so you may test positive. I'm just saying you have a better chance if you took antibiotics for a while before the test. I would encourage you to find an LLMD, because mainstream medicine is just so confused when it comes to Lyme.
After I figured out I had Lyme for myself, I immediately made an appointment with an LLMD. I bypassed all the mess of mainstream medicine as I was so unbelievably exhausted and just knew it wouldn't get me anywhere. I went to ONE walk in clinic doctor to get a free Lyme test and routine labs, should have known he would have done an ELISA. But I didn't know much about Lyme at the time. He had a masters in public health, yet acted like he had never heard of such disease. So I ordered my own LabCorp western blot myself (not very good, but better than an ELISA), which came back completely negative. It's tough to make a decision on getting a non LLMD involved in the Lyme issue because not only is testing a challenge, treatment is as well. You have a better chance at testing positive if you treat with susceptible antibiotics for a while prior to the test.
My LLMD treated me for six months before I had my IGenex. And it was CDC positive! I have treated with a lot of different oral treatments over 18 months now, and I cannot say that I have made progress... But some do. I have probably been infected for 30 years and prior immunosuppressants (which is a big no-no with Lyme), so obviously I'm really sick. I have a lot of coinfections, which complicates things even further.
There are some that can take an IGenex and come up positive without provoking with antibiotics. If that is your only choice and you have the money, I'd say go for it. You haven't been infected too long, so you may test positive. I'm just saying you have a better chance if you took antibiotics for a while before the test. I would encourage you to find an LLMD, because mainstream medicine is just so confused when it comes to Lyme.
Ephedra - thanks for your quick response. This was very, very helpful. May I ask: after you figured out you had Lyme, what treatment did you seek and did it resolve your issues?
I really appreciate the insight. I'm trying to make the difficult decision of telling my neurologist and PCP (both top in their positions in my state, and very well regarded doctors) that I want to push on with the lyme testing and potentially treatment. It's difficult to do when I don't have any hard science to point to, but instead, what I read on the internet. Hearing from you (people that have actually been through it) helps very much.
I really appreciate the insight. I'm trying to make the difficult decision of telling my neurologist and PCP (both top in their positions in my state, and very well regarded doctors) that I want to push on with the lyme testing and potentially treatment. It's difficult to do when I don't have any hard science to point to, but instead, what I read on the internet. Hearing from you (people that have actually been through it) helps very much.
Hello,
Your symptoms do sound typical of Lyme. Testing is not foolproof and
the PCR is nOt cutting edge. I thought that too until I started learning more about these illnesses. The bacteria moves from your blood and into your tissues, joints, ect. PCR only picks up on DNA that is in THAT sample. You could have Lyme DNA in your spinal fluid, but not in that sample and test negative. Only in a very very high infestation will you be more likely to get a positive PCR. I had negative PCRs on everything that came back positive with indirect antibody testing. Blood, that is. I am not certain how spinal fluid testing compares. The IGenex western blot is about as cutting edge as you will get. I would (and did) invest in an IGenex western blot. Lucky for me, I got my answer. That was after a negative western blot and ELISA through a mainstream lab. I went on to test clearly positive for the coinfections via IGenex, again, that was after testing was negative at two other labs. So yes, I think IGenex is the real deal. False negatives are very possible though, even with IGenex. Some LLMDs will diagnose you based on symptoms and your response to treatment.
Just know that there are other strains of Borrelia that can be carried by deer ticks. Can cause similar symptoms, but the testing is not widely available. Test for Anaplasma as it's easy to pick up on with mainstream labs.
Your symptoms do sound typical of Lyme. Testing is not foolproof and
the PCR is nOt cutting edge. I thought that too until I started learning more about these illnesses. The bacteria moves from your blood and into your tissues, joints, ect. PCR only picks up on DNA that is in THAT sample. You could have Lyme DNA in your spinal fluid, but not in that sample and test negative. Only in a very very high infestation will you be more likely to get a positive PCR. I had negative PCRs on everything that came back positive with indirect antibody testing. Blood, that is. I am not certain how spinal fluid testing compares. The IGenex western blot is about as cutting edge as you will get. I would (and did) invest in an IGenex western blot. Lucky for me, I got my answer. That was after a negative western blot and ELISA through a mainstream lab. I went on to test clearly positive for the coinfections via IGenex, again, that was after testing was negative at two other labs. So yes, I think IGenex is the real deal. False negatives are very possible though, even with IGenex. Some LLMDs will diagnose you based on symptoms and your response to treatment.
Just know that there are other strains of Borrelia that can be carried by deer ticks. Can cause similar symptoms, but the testing is not widely available. Test for Anaplasma as it's easy to pick up on with mainstream labs.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
