Aa
Lyme and Lumbar or Spinal Tap
Have Lyme disease and had Spinal... Test for Lyme 3 times positve and Spinal Fluid " pure" as my ID doc
Stated. I spent 5 days on IV treatment...
So if Spinal was "pure".... Why continue?
Stated. I spent 5 days on IV treatment...
So if Spinal was "pure".... Why continue?
We're glad to help -- I get a little revenge against the bacteria by tattling on them here. Ha.
There are people (some also posting here) who have more neurological symptoms than others of us ... some of it seems to depend on the strain of Lyme bacteria which the person has encountered, as well as just differences in each person's immune system and neurology. Dunno.
If you are keen to read about the mess the medical profession has made of Lyme diagnosis and treatment, consider Pamela Weintraub's 'Cure Unknown' (now in paperback, so you know it has sold a lot of copies already) which lays out the mess the medical profession has made of things Lyme.
Although the book didn't say so, I take the absymal title 'Cure Unknown' to mean that what is currently 'unknown' is the 'cure' for the stubborn ignorance of nonLyme docs. There is also a documentary of that same title, but I liked the book better, if you have the attention span for it at this point.
Keep us posted!
===================================
and PS, a small correction to my earlier post, where I said:
"I remember vividly a doc from the IDSA standing in his long white coat, in front of a bank of microphones on live TV, stating that if you were not (1) Haitian or (2) gay, you need not worry about getting AIDS..."
The doc was not from IDSA, but from the CDC, Centers for Disease Control, an affiliate/arm of the US Govt. He may have separately been an IDSA member too, but I don't know. Can still see his face in my memory bank. ... !
There are people (some also posting here) who have more neurological symptoms than others of us ... some of it seems to depend on the strain of Lyme bacteria which the person has encountered, as well as just differences in each person's immune system and neurology. Dunno.
If you are keen to read about the mess the medical profession has made of Lyme diagnosis and treatment, consider Pamela Weintraub's 'Cure Unknown' (now in paperback, so you know it has sold a lot of copies already) which lays out the mess the medical profession has made of things Lyme.
Although the book didn't say so, I take the absymal title 'Cure Unknown' to mean that what is currently 'unknown' is the 'cure' for the stubborn ignorance of nonLyme docs. There is also a documentary of that same title, but I liked the book better, if you have the attention span for it at this point.
Keep us posted!
===================================
and PS, a small correction to my earlier post, where I said:
"I remember vividly a doc from the IDSA standing in his long white coat, in front of a bank of microphones on live TV, stating that if you were not (1) Haitian or (2) gay, you need not worry about getting AIDS..."
The doc was not from IDSA, but from the CDC, Centers for Disease Control, an affiliate/arm of the US Govt. He may have separately been an IDSA member too, but I don't know. Can still see his face in my memory bank. ... !
Thank you for response. I have always been curious how my blood has always tested positive(3 times) and the lumbar didn't. Makes so much more sense now. Knowing it's NOT just neurological is so helpful. Knowing my Lyme disease is more than just Neuro probably explains my gut/stomach problems too. I'm just now fortunate to be seeing a doctor whom focuses on Lyme Disease and will have something other than Doxy and Zith for me. To all that reply I truly appreciate and move forward every time. Gives a lot of hope to an energy filled life:)
Just so you hear another opinion Jackie is right, Lyme doesn't always show up on spinal fluid. In the 22 years of testing I had after my bite, it did not show up in my spinal fluid but I did later test positive on IgeneX western blot.
One of the splits in the medical community is that Lyme specialists understand that Lyme bacteria, shortly after the initial infection, will migrate away from areas where the human immune system would likely encounter and kill the Lyme bacteria. These safer areas have low blood flow, such as cartilage. Thus the Lyme bacteria are not evenly distributed throughout the body.
This aspect of Lyme is not well understood or recognized by nonLLMDs such as infectious disease (ID) MDs. Generally, ID docs treat with doxy, regardless of how long the infection has been in place, and if symptoms continue after doxy treatment, then the position is that the Lyme bacteria really really really are all dead, and the human immune system is simply over-reacting to the now vanquished Lyme bacteria, and you are deemed to have 'post-Lyme syndrome': you don't really have Lyme, but you and your body sure feel like you do.
This is a major difference with LLMDs, who understand that, not long after initial infection, the Lyme bacteria sequester themselves in areas of low blood flow where the human immune system will not easily find them -- such as in cartilage.
This is a major difference between the two camps, and each is certain the other is wrong. It is not really possible imo to straddle the divide and follow the approach of both camps, because their concepts and actions are contradictory to each other.
You ask how one can test 'positive' for Lyme: there are two primary ways:
1 -- take a Western blot/ELISA test or tests and see if the results indicate your immune system is reacting to the presence of Lyme. This is possible at some point in the infection, before the Lyme bacteria work their evil magic by suppressing your immune system to keep it from identifying and killing the Lyme bacteria. So yes, you CAN test positive for Lyme on the Wblot/ELISA tests, as long as you catch the bacteria before they make themselves comfortable in your cartilage where the immune system cannot find them. What the immune system cannot locate, it cannot react to. Result: negative test in the face of a true Lyme infection.
If the tests are negative, the nonLLMDs will say you do not have Lyme, full stop.
2. The opposing camp (ILADS and LLMDs) would, in contrast, say that Lyme has suppressed your immune system and is hiding in plain sight, simply preventing the creation of antibodies against Lyme that the Wblot/ELISA tests would otherwise recognize as the presence of a Lyme infection. To avoid this problem, ILADS and LLMDs prefer a direct test that does not rely on your potentially suppressed immune system to signal that you are infected. Instead, the polymerase chain reaction (PCR) test looks for direct evidence of Lyme bacteria by seeking bits of Lyme DNA in your blood.
When I was tested by my LLMD, he ran both the (indirect) Western blot/ELISA combo test *and* the (direct) PCR test. I was positive on BOTH kinds of tests, which impressed my LLMD, because he said it was a sign that I had Lyme but I also had a strong immune system that had not yet been beaten down by the suppressive activity of the Lyme bacteria.
It is a long time ago I was reading about spinal fluid as a medium for Lyme bacteria to live in, so I haven't followed the continuing claims by the nonLLMDs about locating Lyme in other places like spinal fluid. It is indeed *possible* to find Lyme bacteria in the spinal fluid, but why continue to look for it there when a much surer correlation can be found in the blood stream?
It's like the old joke about the inebriated fellow who was looking for his car keys under the glowing street lamp, and when asked why he was looking there instead of nearer to his car, he said 'Because the light is so much better here.' IDSA wants to look in the spinal fluid because ... like the the tipsy fellow, he is unthinkingly limiting the likelihood of finding what they are looking for. It's nonsensical imo, and reflects the vanity and politics running through the entire brigade of Lyme-deniers.
Lyme is not classified to my knowledge solely as a 'neurological' disease, but it does affect the mind and nerves and so on -- and it also affects other parts of the body, such as cartilage, which is not neurological at all. The Lyme deniers make the extraordinary leap of saying that spinal fluid is the *only* location that really matters, and without it, one cannot have Lyme disease. As a result, they then ignore other testing (PCR) that would be a straighter shot to determining whether someone really has Lyme.
I suspect this awkward position at IDSA arose at a time when very little was known about Lyme, and the IDSA's positions have hardened in the intervening years -- which led to the creation of ILADS and its less tortured view of Lyme and what it is all about.
To my understanding, having Lyme bacteria in spinal fluid indicates a Lyme infection, but because Lyme bacteria are more often found in other areas of the body, why rely on a less accurate indicator and *require* the presence of Lyme in the spinal fluid? That certainly keeps the number of diagnosed cases to a minimum, but doesn't do much for the patients.
The whole Lyme controversy is a larger and only slightly less awful version of what happened when AIDS first arrived on the scene: I remember vividly a doc from the IDSA standing in his long white coat, in front of a bank of microphones on live TV, stating that if you were not (1) Haitian or (2) gay, you need not worry about getting AIDS, because only Haitians and gays had Lyme. This skewed manner of how to view disease transmission has now been applied as well to the Lyme controversy, and it's not over yet.
Bottom line, from what I read: it is not necessary to have Lyme bacteria in your spinal fluid to be diagnosed with Lyme. Lyme is sometimes found there, but to make it a requirement to get a Lyme diagnosis is illogical. Lyme is more often found in the bloodstream, and certainly easier to access there for testing.
That Lyme can affect the neurological system does not mean it is necessarily found in large quantities there ... and there are many manifestations of Lyme: some people have more neuro symptoms, while others have joint/cartilage issues, and yet others have gut/digestive issues. So *requiring* someone to have Lyme bacteria in spinal fluid is ignoring all the people who have Lyme affecting other body parts.
Just my uneducated view. Others may feel free to differ!
This aspect of Lyme is not well understood or recognized by nonLLMDs such as infectious disease (ID) MDs. Generally, ID docs treat with doxy, regardless of how long the infection has been in place, and if symptoms continue after doxy treatment, then the position is that the Lyme bacteria really really really are all dead, and the human immune system is simply over-reacting to the now vanquished Lyme bacteria, and you are deemed to have 'post-Lyme syndrome': you don't really have Lyme, but you and your body sure feel like you do.
This is a major difference with LLMDs, who understand that, not long after initial infection, the Lyme bacteria sequester themselves in areas of low blood flow where the human immune system will not easily find them -- such as in cartilage.
This is a major difference between the two camps, and each is certain the other is wrong. It is not really possible imo to straddle the divide and follow the approach of both camps, because their concepts and actions are contradictory to each other.
You ask how one can test 'positive' for Lyme: there are two primary ways:
1 -- take a Western blot/ELISA test or tests and see if the results indicate your immune system is reacting to the presence of Lyme. This is possible at some point in the infection, before the Lyme bacteria work their evil magic by suppressing your immune system to keep it from identifying and killing the Lyme bacteria. So yes, you CAN test positive for Lyme on the Wblot/ELISA tests, as long as you catch the bacteria before they make themselves comfortable in your cartilage where the immune system cannot find them. What the immune system cannot locate, it cannot react to. Result: negative test in the face of a true Lyme infection.
If the tests are negative, the nonLLMDs will say you do not have Lyme, full stop.
2. The opposing camp (ILADS and LLMDs) would, in contrast, say that Lyme has suppressed your immune system and is hiding in plain sight, simply preventing the creation of antibodies against Lyme that the Wblot/ELISA tests would otherwise recognize as the presence of a Lyme infection. To avoid this problem, ILADS and LLMDs prefer a direct test that does not rely on your potentially suppressed immune system to signal that you are infected. Instead, the polymerase chain reaction (PCR) test looks for direct evidence of Lyme bacteria by seeking bits of Lyme DNA in your blood.
When I was tested by my LLMD, he ran both the (indirect) Western blot/ELISA combo test *and* the (direct) PCR test. I was positive on BOTH kinds of tests, which impressed my LLMD, because he said it was a sign that I had Lyme but I also had a strong immune system that had not yet been beaten down by the suppressive activity of the Lyme bacteria.
It is a long time ago I was reading about spinal fluid as a medium for Lyme bacteria to live in, so I haven't followed the continuing claims by the nonLLMDs about locating Lyme in other places like spinal fluid. It is indeed *possible* to find Lyme bacteria in the spinal fluid, but why continue to look for it there when a much surer correlation can be found in the blood stream?
It's like the old joke about the inebriated fellow who was looking for his car keys under the glowing street lamp, and when asked why he was looking there instead of nearer to his car, he said 'Because the light is so much better here.' IDSA wants to look in the spinal fluid because ... like the the tipsy fellow, he is unthinkingly limiting the likelihood of finding what they are looking for. It's nonsensical imo, and reflects the vanity and politics running through the entire brigade of Lyme-deniers.
Lyme is not classified to my knowledge solely as a 'neurological' disease, but it does affect the mind and nerves and so on -- and it also affects other parts of the body, such as cartilage, which is not neurological at all. The Lyme deniers make the extraordinary leap of saying that spinal fluid is the *only* location that really matters, and without it, one cannot have Lyme disease. As a result, they then ignore other testing (PCR) that would be a straighter shot to determining whether someone really has Lyme.
I suspect this awkward position at IDSA arose at a time when very little was known about Lyme, and the IDSA's positions have hardened in the intervening years -- which led to the creation of ILADS and its less tortured view of Lyme and what it is all about.
To my understanding, having Lyme bacteria in spinal fluid indicates a Lyme infection, but because Lyme bacteria are more often found in other areas of the body, why rely on a less accurate indicator and *require* the presence of Lyme in the spinal fluid? That certainly keeps the number of diagnosed cases to a minimum, but doesn't do much for the patients.
The whole Lyme controversy is a larger and only slightly less awful version of what happened when AIDS first arrived on the scene: I remember vividly a doc from the IDSA standing in his long white coat, in front of a bank of microphones on live TV, stating that if you were not (1) Haitian or (2) gay, you need not worry about getting AIDS, because only Haitians and gays had Lyme. This skewed manner of how to view disease transmission has now been applied as well to the Lyme controversy, and it's not over yet.
Bottom line, from what I read: it is not necessary to have Lyme bacteria in your spinal fluid to be diagnosed with Lyme. Lyme is sometimes found there, but to make it a requirement to get a Lyme diagnosis is illogical. Lyme is more often found in the bloodstream, and certainly easier to access there for testing.
That Lyme can affect the neurological system does not mean it is necessarily found in large quantities there ... and there are many manifestations of Lyme: some people have more neuro symptoms, while others have joint/cartilage issues, and yet others have gut/digestive issues. So *requiring* someone to have Lyme bacteria in spinal fluid is ignoring all the people who have Lyme affecting other body parts.
Just my uneducated view. Others may feel free to differ!
We discussed briefly through PM. I'm just very baffled how you can test " positive" for Lyme disease. However after my Spinal/Lumbar Pucture was done my ID doc admitted me for IV treatment, and said my Spinal Fluid was clean/pure. If this disease is neurological why would it not show up in a lumbar puncture. And quite obviously my infectious disease doctor was worried that's why I spent five days on IVs having treatment done because I tested positive for Lyme disease. I guess finding out the correlation between testing positive for blood work for Lyme disease and then having clean spinal fluid after a lumbar puncture or is the real true question? Makes you wonder.?
Not sure if I understand your question -- if you are asking why keep taking meds if there is no Lyme detected in your spinal fluid, the answer I would think of (but check with your doc -- I'm not medically trained) is that Lyme bacteria are not always found in spinal fluid. They like to hide in different places in different people. Therefore you can have Lyme but not have it in your spinal fluid, and it sounds like Lyme was detected in your blood. If so, then it's a Lyme infection.
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