Aa
Treating Lyme Disease
Rebeccah, our "Speechgeek" just posted about the difficulties she has had recently with antibiotics and her symptoms. To understand this thread I recommend that you read her post, "Update." The following is something that I have been wanting to write up for the forum and Speechgeek gives a great opportunity.
First, to bring the forum up on some things. The Lyme bacterium (it is actually a microbe known as a spirochete, like syphillis) is known to be capable of being in its natural state as when it reproduces and causes infection and symptoms. But, in a hostile environment, it is able to "encyst." That means it literally can roll itself up into a ball and protect itself from harm. In the cyst state it is resistant to antibiotics, but it is also inactive. It does cause further infection, nor can it reproduce. The bacterium can move back and forth between the active state and the cyst state, depending on the environment.
If it is in the cyst form it may unfold when the environments no longer has antibiotics around (like when you stopped the Amoxicillin) or when the immune system is suppressed. That is why the Lyme infection can go wild in the presence of steroids. This is just one way that a Lyme infection is different from MS. Also, a Lyme infection is more likely to be active during pregnancy when the immune system is suppressed, and MS is more likely to quiet.
So, when Rebeccah stopped the Amoxicillin, she had a huge return of symptoms within 48 hours. Since the Lyme bug is slow to reproduce, the quick return of symptoms suggests that she had a huge number of Lyme bacteria in cyst form that "flipped" forms and suddenly became active. I would not be able to accept she had a full return of symptoms in only 48 hours after stopping antibiotics, given the slow rate at which Lyme reproduces, unless, they were already present in large numbers in the cyst form. Just to give you a sense of what I am talking about. The strep (Strep throat) bacteria can double itself in just 20 minutes. So, a day or two off the antibiotic can easily see a return of symptoms. In contrast the Lyme spirochete only doubles its numbers in as few as 7 hours to as slowly as a full day.
That says to me that the Amoxicillin, even in its high dose was not being effect in "treating" her infection. It was merely keeping the infection "at bay" with the bugs being in cyst form but, not being killed. I say this because if the amoxicillin was working, the bugs would have been in low numbers. It would have taken a lot more than 48 hours to reproduce enough to give such intense symptoms. Does this make sense?
Now she is on a different category of antibiotic, called a cephalosporin. I don't know much about cefdinir (brand Omnicef). A week and a half into treatment she is still feeling bad.
Rebeccah - Is it with the same symptoms as when you were off treatment? Or does the Lyme doc say that your current symptoms are from herx'ing? Traditionally the term Herxheimer Reaction was used with syphillis (related to the Lyme bug) to describe the very intial reaction when first starting antibiotics. A huge load of bacteria would be killed and dissolve, releasing many proteins into the blood and the person would react with fever, chills, pain and such.
In the modern-day treatment of Lyme the term herx reaction is now used for the repeated symptoms during longterm treatment - saying that this return of symptoms means more bugs are being killed. Not to be the eternal skeptic, but this does not make scientific sense to me - but I digress.
Is this how your Lyme Dr. is explaining what is going on? Alternatively, it is possible that your load of Lyme bacteria are not being killed by the cefdinir (it is re-encysted or it is resistant) and you are having continued infection. Again, I'm curious about how you doc interprets this.
In any case, I'm sorry you're not doing well this moment. I hope it is just a matter of finding a regimen that will kill the Lyme.
To all - There are testing methods that can test for the actual existence of the spirochete (not just antibodies to them), especially when it is causing active infection or being active killed (but not so much in the cyst form). I know they use this test in research studies, because I have read about them. The test is called PCR (Polymerase Chain Reaction). This test can pick up minute amounts of a particular DNA, rapidly multiply it into millions of copies and print out its signature. This is the exact test used by crime labs (yes, CSI) to run DNA matches. In studies, they can do the PCR test on serum and CSF to see if continued symptoms after treatment indicate the Lyme spirochete is still present or if the symptoms may indicate Post-Lyme Syndrome. Looking for DNA is a very direct way to show that the germs are present in the body.
If the Lyme spirochete is reproducing or dying in the body it will release DNA into the body which can be tested for. What I don't know is if the PCR is generally available to the doctor in practice.
I mentioned a condition called Post-Lyme Syndrome. Many researchers feel that the ongoing symptoms suffered by people after long-term treatment of Lyme indicate a type of autoimmune condition that was caused by damage to the immune system by the prior Lyme infection, but is ongoing in the same way any autoimmune illness is. Many Lyme experts refute this and believe that it is hidden, ongoing Lyme infection. One way to sort it out is to do the PCR on the blood and CSF. In the studies I have read, after 4 to 6 months of antibiotics, most cases are negative for the DNA of the Lyme microbe. The occasional one is still positive and needs ongoing antibiotics. This is one of the fundatmental controversies in the Lyme debate.
I hope this has been interesting. I am learning a lot about Lyme infections. The debate between traditional Infectious Disease researchers and Lyme researchers continues to rage, but I am confident that some answers will be found and that we will see that each side has some valid points.
I really hope that this raises some questions that either Rebeccah or I can try to answer. Lyme disease is very real and is underdiagnosed because of a misunderstanding of the medical profession on how to test for it.
Quix
First, to bring the forum up on some things. The Lyme bacterium (it is actually a microbe known as a spirochete, like syphillis) is known to be capable of being in its natural state as when it reproduces and causes infection and symptoms. But, in a hostile environment, it is able to "encyst." That means it literally can roll itself up into a ball and protect itself from harm. In the cyst state it is resistant to antibiotics, but it is also inactive. It does cause further infection, nor can it reproduce. The bacterium can move back and forth between the active state and the cyst state, depending on the environment.
If it is in the cyst form it may unfold when the environments no longer has antibiotics around (like when you stopped the Amoxicillin) or when the immune system is suppressed. That is why the Lyme infection can go wild in the presence of steroids. This is just one way that a Lyme infection is different from MS. Also, a Lyme infection is more likely to be active during pregnancy when the immune system is suppressed, and MS is more likely to quiet.
So, when Rebeccah stopped the Amoxicillin, she had a huge return of symptoms within 48 hours. Since the Lyme bug is slow to reproduce, the quick return of symptoms suggests that she had a huge number of Lyme bacteria in cyst form that "flipped" forms and suddenly became active. I would not be able to accept she had a full return of symptoms in only 48 hours after stopping antibiotics, given the slow rate at which Lyme reproduces, unless, they were already present in large numbers in the cyst form. Just to give you a sense of what I am talking about. The strep (Strep throat) bacteria can double itself in just 20 minutes. So, a day or two off the antibiotic can easily see a return of symptoms. In contrast the Lyme spirochete only doubles its numbers in as few as 7 hours to as slowly as a full day.
That says to me that the Amoxicillin, even in its high dose was not being effect in "treating" her infection. It was merely keeping the infection "at bay" with the bugs being in cyst form but, not being killed. I say this because if the amoxicillin was working, the bugs would have been in low numbers. It would have taken a lot more than 48 hours to reproduce enough to give such intense symptoms. Does this make sense?
Now she is on a different category of antibiotic, called a cephalosporin. I don't know much about cefdinir (brand Omnicef). A week and a half into treatment she is still feeling bad.
Rebeccah - Is it with the same symptoms as when you were off treatment? Or does the Lyme doc say that your current symptoms are from herx'ing? Traditionally the term Herxheimer Reaction was used with syphillis (related to the Lyme bug) to describe the very intial reaction when first starting antibiotics. A huge load of bacteria would be killed and dissolve, releasing many proteins into the blood and the person would react with fever, chills, pain and such.
In the modern-day treatment of Lyme the term herx reaction is now used for the repeated symptoms during longterm treatment - saying that this return of symptoms means more bugs are being killed. Not to be the eternal skeptic, but this does not make scientific sense to me - but I digress.
Is this how your Lyme Dr. is explaining what is going on? Alternatively, it is possible that your load of Lyme bacteria are not being killed by the cefdinir (it is re-encysted or it is resistant) and you are having continued infection. Again, I'm curious about how you doc interprets this.
In any case, I'm sorry you're not doing well this moment. I hope it is just a matter of finding a regimen that will kill the Lyme.
To all - There are testing methods that can test for the actual existence of the spirochete (not just antibodies to them), especially when it is causing active infection or being active killed (but not so much in the cyst form). I know they use this test in research studies, because I have read about them. The test is called PCR (Polymerase Chain Reaction). This test can pick up minute amounts of a particular DNA, rapidly multiply it into millions of copies and print out its signature. This is the exact test used by crime labs (yes, CSI) to run DNA matches. In studies, they can do the PCR test on serum and CSF to see if continued symptoms after treatment indicate the Lyme spirochete is still present or if the symptoms may indicate Post-Lyme Syndrome. Looking for DNA is a very direct way to show that the germs are present in the body.
If the Lyme spirochete is reproducing or dying in the body it will release DNA into the body which can be tested for. What I don't know is if the PCR is generally available to the doctor in practice.
I mentioned a condition called Post-Lyme Syndrome. Many researchers feel that the ongoing symptoms suffered by people after long-term treatment of Lyme indicate a type of autoimmune condition that was caused by damage to the immune system by the prior Lyme infection, but is ongoing in the same way any autoimmune illness is. Many Lyme experts refute this and believe that it is hidden, ongoing Lyme infection. One way to sort it out is to do the PCR on the blood and CSF. In the studies I have read, after 4 to 6 months of antibiotics, most cases are negative for the DNA of the Lyme microbe. The occasional one is still positive and needs ongoing antibiotics. This is one of the fundatmental controversies in the Lyme debate.
I hope this has been interesting. I am learning a lot about Lyme infections. The debate between traditional Infectious Disease researchers and Lyme researchers continues to rage, but I am confident that some answers will be found and that we will see that each side has some valid points.
I really hope that this raises some questions that either Rebeccah or I can try to answer. Lyme disease is very real and is underdiagnosed because of a misunderstanding of the medical profession on how to test for it.
Quix
This is a great discussion about something that has been on my mind. I hate to potentially stir the pot any, but in the past I have noticed some "odd" or semi-heated discussion about a possible tie between Lymes and MS. I am quite possibly being naive here, but what is the issue....is it that Lymes is a bacteria and gives hope for a cure where as MS is somewhat an unknown?
Quix...ealier in the thread you mentioned there are 4 types of MS lesions. I have no prior knowledge of this reference...could you please give a little more information on this when you have a chance? Thanks in advance.
Quix...ealier in the thread you mentioned there are 4 types of MS lesions. I have no prior knowledge of this reference...could you please give a little more information on this when you have a chance? Thanks in advance.
I am not debating any point of views. All this is new for me. I'm trying to understant the disease and a successful treatment if there is one. My two kids and I were bitten by insects in 08-09/07 (I am not sure they were ticks), but since then, we started having multiple symptoms. I learned about lyme after my primary MD had me tested for Lyme. I know that there is a chance to get infections transmitted by insects (not just Lyme).
But I am very confused because there were other factors involved in our case that could caused all these symptoms. I stated some of those factors on my journal. If you have time, please, please read it. You have a medical background and may have an idea what I should ask to my and my kids' doctors. I think that all these symptoms could be due to and infection, chemical exposure or some kind of allergy.
I do not want my kids to be tested for unneeded lab nor I want them to think they're sick -their complains will grow - But it's a real concern when they tell me how they feel and I could do nothing to help them.
Thank you so much,
kitty
But I am very confused because there were other factors involved in our case that could caused all these symptoms. I stated some of those factors on my journal. If you have time, please, please read it. You have a medical background and may have an idea what I should ask to my and my kids' doctors. I think that all these symptoms could be due to and infection, chemical exposure or some kind of allergy.
I do not want my kids to be tested for unneeded lab nor I want them to think they're sick -their complains will grow - But it's a real concern when they tell me how they feel and I could do nothing to help them.
Thank you so much,
kitty
I really do not undestand.
If spirocket can not be killed with antibiotic because they protect themselves as soon as the antibiotics enter the body. Why after 4 to 6 months on antibiotics most cases are negative for the DNA of Lyme? Does this mean there is no DNA for Lyme, but you still carry the spirockete that causes Lyme disease and you will never get rig off it? I was tested for lyme twice having these results:
Lyme Western Blot Results for first one =0.67; for second one= 0.15 (Negative results)
Do you have any idea why the number went down?
I have many symptoms, and I asked my infectious disease doctor why he does not prescribe me antibiotic, if there is a probability of infection. He said, first he needs to find out what is causing the symptoms and the increase of my Lymphos. Now I am waiting for results of the blood tests he ordered.
I am not very experience at navagating in the forum, I get lost on it. I'll try to follow up.
If you have a chance would you read my Journal and give me your thoughts.
kitty
If spirocket can not be killed with antibiotic because they protect themselves as soon as the antibiotics enter the body. Why after 4 to 6 months on antibiotics most cases are negative for the DNA of Lyme? Does this mean there is no DNA for Lyme, but you still carry the spirockete that causes Lyme disease and you will never get rig off it? I was tested for lyme twice having these results:
Lyme Western Blot Results for first one =0.67; for second one= 0.15 (Negative results)
Do you have any idea why the number went down?
I have many symptoms, and I asked my infectious disease doctor why he does not prescribe me antibiotic, if there is a probability of infection. He said, first he needs to find out what is causing the symptoms and the increase of my Lymphos. Now I am waiting for results of the blood tests he ordered.
I am not very experience at navagating in the forum, I get lost on it. I'll try to follow up.
If you have a chance would you read my Journal and give me your thoughts.
kitty
Rebeccah - I didn't mean to imply that I thought you had Post-Lyme. You haven't been on treatment very long, if this is Lyme, and it seems that the amox was ineffective. Your description of the timing of your symptoms, their rapid up and down, does not sound like the post-Lyme Syndrome that I have read about.
I also considered the anti-inflammatory effect of antibiotics, but your improvement seemed far too great to be atributable to this. It could have palyed a role though, in the rapid return of symptoms after you stopped.
I am not being argumentative here, but I do not understand the process of diagnosing sero-negative Lyme. If the bugger is causing such great symptoms as to incapacitate you, then it needs to be in it's regular form during that time. This is the form that the immune system recognizes and makes antibodies to. So why would one have longstanding and such severe symptoms, but no immune response? I have read the explanations that it "shape-shifts" to avoid the immune system, but it doesn't really make sense to me. There would have to be a defect in the immune system itself, I would think.
When you said you have band 24 (or whichever one) Lyme-specific positive, doesn't that mean you did have 1 oligoclonal band? And why is that called sero-negative? Generally do they require more bands? And does that particular band ever appear in other diseases?
It is great that your doctor remains open-minded about the topic, but we have to stop somewhere and put our faith & trust in something in order to move forward. That faith/belief may change from time to time, but otherwise we are immobilized by indecision. Even though he says "doubt him," I think you need to trust him while he formulates a different plan.
In many ways, I think it is less disgusting to think there is a potentially conquerable spirochete attacking me (knowing what I know about the germs in the body) than that my own immune system is attacking my nervous system.
Stacey - a researcher back in the 90's found Lyme cysts in the brain lesions of several MS patients. His findings have not been duplicated by other researchers. Looking at autopsy brains, under high-power microscopes, in MS is very common, because they are attempting to understand the four types of MS lesions to better understand what the problems are and what the cause might be.
I am not able to buy into the MS is Lyme. I have read several articles on this topic and do not find them persuasive. Perhaps you could tell me the name of the researcher speaking on it, then I could go read his articles.
The drug companies are constantly looking for new antibiotics because the heavy use is constantly breeding resistant bacteria.
all- I definitely get the idea that looking for Lyme DNA in the CSF is wasting time, but the studies that have found it were very interesting. I agree that looking for "antibodies" against Lyme (Western blot) in the CSF is not helpful. There is a real difference, though, in the implications of finding DNA versus finding antibodies.
Andie - No, 6 days of steroids is enough to provide an anti-inflammatory effect, but not enough to effectively suppress the immune system. In MS they use doses that really do suppress the immune system. So, your experience would not rule out Lyme. For instance, a typical oral dose of Medrol is 20 to 32mg, of prednisone is 40 to 60mg daily. In MS they give 1000mg of the IV (Solu)Medrol which is equivalent to 1200mg of prednisone.
I clearly have some set prejudices with some of the literature about Lyme. And I am not reading the up-to-date stuff. So no one here should really depend on my assessment. I was not a star in microbiology, I was a pediatrician.
Time for breakfast. I just got up.
Quix
I also considered the anti-inflammatory effect of antibiotics, but your improvement seemed far too great to be atributable to this. It could have palyed a role though, in the rapid return of symptoms after you stopped.
I am not being argumentative here, but I do not understand the process of diagnosing sero-negative Lyme. If the bugger is causing such great symptoms as to incapacitate you, then it needs to be in it's regular form during that time. This is the form that the immune system recognizes and makes antibodies to. So why would one have longstanding and such severe symptoms, but no immune response? I have read the explanations that it "shape-shifts" to avoid the immune system, but it doesn't really make sense to me. There would have to be a defect in the immune system itself, I would think.
When you said you have band 24 (or whichever one) Lyme-specific positive, doesn't that mean you did have 1 oligoclonal band? And why is that called sero-negative? Generally do they require more bands? And does that particular band ever appear in other diseases?
It is great that your doctor remains open-minded about the topic, but we have to stop somewhere and put our faith & trust in something in order to move forward. That faith/belief may change from time to time, but otherwise we are immobilized by indecision. Even though he says "doubt him," I think you need to trust him while he formulates a different plan.
In many ways, I think it is less disgusting to think there is a potentially conquerable spirochete attacking me (knowing what I know about the germs in the body) than that my own immune system is attacking my nervous system.
Stacey - a researcher back in the 90's found Lyme cysts in the brain lesions of several MS patients. His findings have not been duplicated by other researchers. Looking at autopsy brains, under high-power microscopes, in MS is very common, because they are attempting to understand the four types of MS lesions to better understand what the problems are and what the cause might be.
I am not able to buy into the MS is Lyme. I have read several articles on this topic and do not find them persuasive. Perhaps you could tell me the name of the researcher speaking on it, then I could go read his articles.
The drug companies are constantly looking for new antibiotics because the heavy use is constantly breeding resistant bacteria.
all- I definitely get the idea that looking for Lyme DNA in the CSF is wasting time, but the studies that have found it were very interesting. I agree that looking for "antibodies" against Lyme (Western blot) in the CSF is not helpful. There is a real difference, though, in the implications of finding DNA versus finding antibodies.
Andie - No, 6 days of steroids is enough to provide an anti-inflammatory effect, but not enough to effectively suppress the immune system. In MS they use doses that really do suppress the immune system. So, your experience would not rule out Lyme. For instance, a typical oral dose of Medrol is 20 to 32mg, of prednisone is 40 to 60mg daily. In MS they give 1000mg of the IV (Solu)Medrol which is equivalent to 1200mg of prednisone.
I clearly have some set prejudices with some of the literature about Lyme. And I am not reading the up-to-date stuff. So no one here should really depend on my assessment. I was not a star in microbiology, I was a pediatrician.
Time for breakfast. I just got up.
Quix
Quix
I guess what I meant about my PCR test is that I can't win in terms in getting confirmed results. The literature is interesting on PCR. I had read in my IDSA stuff that they didn't believe in it and that the Lyme docs were doing “experimental" PCR testing yet my infectious disease doc was the one who did the test. It was done at our local hospital so I don't know if they know what they are doing.
What you say we get together draw some blood ... kill some spirochetes and hunt their foot prints!!! I am writing all this stuff down to ask the Lyme doc in August.
One comment though if this was Post Lyme syndrome I don't believe I would be sick.... then 90% normal rock n rolling through life without a care in the world then to get knocked back down. Unlike my mom who has had this 10 years seems to feel consistently ill no matter she is doing... treating.... not treating etc.
The other question I have is ... Antibiotics have an anti-inflammatory effect... well my onset of symptoms returning was severe pain down both my legs in the middle of the night that lasted days. The neuro stuff started and then fatigue. Could some of that have been coming off high dose antibiotics?
I have got to get my self togehter... re-group and try to figure out a new plan.
Rebeccah
I guess what I meant about my PCR test is that I can't win in terms in getting confirmed results. The literature is interesting on PCR. I had read in my IDSA stuff that they didn't believe in it and that the Lyme docs were doing “experimental" PCR testing yet my infectious disease doc was the one who did the test. It was done at our local hospital so I don't know if they know what they are doing.
What you say we get together draw some blood ... kill some spirochetes and hunt their foot prints!!! I am writing all this stuff down to ask the Lyme doc in August.
One comment though if this was Post Lyme syndrome I don't believe I would be sick.... then 90% normal rock n rolling through life without a care in the world then to get knocked back down. Unlike my mom who has had this 10 years seems to feel consistently ill no matter she is doing... treating.... not treating etc.
The other question I have is ... Antibiotics have an anti-inflammatory effect... well my onset of symptoms returning was severe pain down both my legs in the middle of the night that lasted days. The neuro stuff started and then fatigue. Could some of that have been coming off high dose antibiotics?
I have got to get my self togehter... re-group and try to figure out a new plan.
Rebeccah
I just want to say that you have my sympathy in this. It must be horrible to have a doctor say "Don't even trust me." Who in the world are you supposed to trust? I am a great believer in being your own advocate and being proactive, but there comes a point where we just don't have the medical wherewithal.
Please keep posting about your relative well-being and let us know how things progress. There probably are others among us who have Lyme and don't know it. MS seems like a much simpler deal!
ess
Please keep posting about your relative well-being and let us know how things progress. There probably are others among us who have Lyme and don't know it. MS seems like a much simpler deal!
ess
For what it is worth, here is the plan by my LLMD. I am on doxycycline 200mg bid until all my symptoms are gone, then take it for one more month. Next step is to start flagyl for the cyst form (not sure how long that will take). It is a frightening disease, because if I happen to miss a dose I can still tell. The numbness comes back some, but not as bad as before I was treated. I tried to go down on my dose, not so good. He offered me IV antibiotics(since I have neuro-lyme), but I really didn't want a picc line to take care of and I had done well on the rx of doxycycline from my GP.
He also told me that it is very difficult to get a positive CSF lyme test. He said that it likes to go into the cyst form when it is in the CSF. It was something like only 5% of known neuro lyme patients will test positive. He also says that this is a very controversial disease and to double check everything said about it, even from him. I truly hate being in this position. I think I have purposely NOT done a lot of research into it all because some of it sounds crazy and I just don't always know what is accurate.
Someone sent me a DVD of a doctor discussing lyme & MS. It actually shows the bacteria balling up into the cyst form. Quix, if you would be interested, I would like to get your opinion on it. I could try to burn you a DVD copy and send it to you. I guess with white matter lesions, hyper reflexes and one O-band, any link between the two is something that I have to consider.
I admit that before all of this,I couldn't understand why people are on antibiotics for longer than a month. There is a lady that lives about 1/4 mile from me that has been on them for 2 years for lyme. Unfortunately, you do what you have to do. I know it doesn't all make sense. I wonder if they aren't missing something that would make sense of it all (another unknown infectious organism?). Maybe the drug companies need to develop a new line of antibiotic therapy, but why would they when the infectious disease docs only recommend such a short treatment guideline. I guess because it all doesn't make sense, most doctors choose to deny/ignore the disease and let people suffer.
I know I have had people comment on how I am back to my old self. I might not get back to 100%, but 90+% feels great. I am getting better and not worse. People spend years on tetracycline for acne, so I guess I am not too worried about it.
Stacey
He also told me that it is very difficult to get a positive CSF lyme test. He said that it likes to go into the cyst form when it is in the CSF. It was something like only 5% of known neuro lyme patients will test positive. He also says that this is a very controversial disease and to double check everything said about it, even from him. I truly hate being in this position. I think I have purposely NOT done a lot of research into it all because some of it sounds crazy and I just don't always know what is accurate.
Someone sent me a DVD of a doctor discussing lyme & MS. It actually shows the bacteria balling up into the cyst form. Quix, if you would be interested, I would like to get your opinion on it. I could try to burn you a DVD copy and send it to you. I guess with white matter lesions, hyper reflexes and one O-band, any link between the two is something that I have to consider.
I admit that before all of this,I couldn't understand why people are on antibiotics for longer than a month. There is a lady that lives about 1/4 mile from me that has been on them for 2 years for lyme. Unfortunately, you do what you have to do. I know it doesn't all make sense. I wonder if they aren't missing something that would make sense of it all (another unknown infectious organism?). Maybe the drug companies need to develop a new line of antibiotic therapy, but why would they when the infectious disease docs only recommend such a short treatment guideline. I guess because it all doesn't make sense, most doctors choose to deny/ignore the disease and let people suffer.
I know I have had people comment on how I am back to my old self. I might not get back to 100%, but 90+% feels great. I am getting better and not worse. People spend years on tetracycline for acne, so I guess I am not too worried about it.
Stacey
question here for you...I'm not yet Dx...my GP put me on prednisone a few weeks back for 6 days to help with me when I had alot of pain and vertigo...etc...
if the predinsone helped my leg pain and off balance issues...does this mean it cannot be Lymes?
I was tested for Lymes a year ago it was Neg..so ??
andie
if the predinsone helped my leg pain and off balance issues...does this mean it cannot be Lymes?
I was tested for Lymes a year ago it was Neg..so ??
andie
Exactly!! I was wondering if they ever tried pulsing. It makes way more sense then constatn bombardment. I would even wonder about a very short course (1 or 2 days) of steroids to bring them out just before the pulse.
Now, I have to take issue with the PCR being negative because you were sero-negative. Sero-negative would have to do with not being positive for antibodies. PCR tests not for your reaction to the spirochete (in antibodies) but for the buggers themselves by finding their DNA. If there is a belief that they encyst and hide when you draw blood, then mix something in with the blood that will kill them, then dissolve them and release their DNA to be checked for by PCR. You don't need them to be alive to find their DNA.
There have to be ways of doing this. Also, anytime a person is "herx'ing" then they should be positive by PCR. Herx'ing is caused by the death of the organisms and their death releases DNA.
Doesn't this make sense?
So, why does your doc think you feel so bad now? It sounds like he agrees that the Amox was not quite doing it and that they uncysted when you stopped the amox. That is the only way you could have had symptoms so quickly in my mind.
Quix
Quix
Now, I have to take issue with the PCR being negative because you were sero-negative. Sero-negative would have to do with not being positive for antibodies. PCR tests not for your reaction to the spirochete (in antibodies) but for the buggers themselves by finding their DNA. If there is a belief that they encyst and hide when you draw blood, then mix something in with the blood that will kill them, then dissolve them and release their DNA to be checked for by PCR. You don't need them to be alive to find their DNA.
There have to be ways of doing this. Also, anytime a person is "herx'ing" then they should be positive by PCR. Herx'ing is caused by the death of the organisms and their death releases DNA.
Doesn't this make sense?
So, why does your doc think you feel so bad now? It sounds like he agrees that the Amox was not quite doing it and that they uncysted when you stopped the amox. That is the only way you could have had symptoms so quickly in my mind.
Quix
Quix
Quix (Grissom)
First ...thanks for the beautiful post. I have been faithful to my probiotic. My C-diff test was negative. I told my hubby I am a Petri dish of disgust with my spirochetes, viruses (CMV/EBV) and the colonies of bacteria I keep trying to grow. I hear the Activia commercial in my head ALL the time.
I would agree with you on several things... one that the antibiotics were keeping things at bay..Did you know that they cyst phase happens within 10 minutes of blood being drawn? Did you know that even how the blood is handled and how it is oscillated in the collection tube affects how the bacteria can hide?
My Lyme doc is a dear man that has been battling Lyme disease 10 years. He recently stopped treatment and is doing great. He is doing research out of a local university and keeps me up to date on the latest and greatest. He does not know what is going on. He thinks that I had a reaction to the antibiotic and was not surprised that my symptoms returned. he was surprised that I was surprised. He says they are tricky little beasts.
My symptoms are the same a little less intense on the cefdinir than when I was off antibiotics.
We have talked about trying something called "pulsing" That's where you treat for a couple of weeks and then go off treatment so the sneaky little critters come out and then blast them again. It makes sense on one level in that they are literally lying there safe in their cyst waiting. I can't think about it too much because it really is disgusting.
I had PCR blood test run by the infectious disease and he reports that it came back negative. Again not a surprised....Since I am considered "seronegative" Lyme.. FYI... my mother’s tests..... PCR ....everything on CSF all came negative. Her PCR Urine was the only thing positive. She also tested positive for babesia, semolina, and rocky mountain spotted fever. Testing CSF is not the best way to go with this disease. I have found that's the one thing all the doctors agree on.
All I can tell you is that before my GI issue I was 99% normal..my old life was back and now not so much.
Rebeccah
First ...thanks for the beautiful post. I have been faithful to my probiotic. My C-diff test was negative. I told my hubby I am a Petri dish of disgust with my spirochetes, viruses (CMV/EBV) and the colonies of bacteria I keep trying to grow. I hear the Activia commercial in my head ALL the time.
I would agree with you on several things... one that the antibiotics were keeping things at bay..Did you know that they cyst phase happens within 10 minutes of blood being drawn? Did you know that even how the blood is handled and how it is oscillated in the collection tube affects how the bacteria can hide?
My Lyme doc is a dear man that has been battling Lyme disease 10 years. He recently stopped treatment and is doing great. He is doing research out of a local university and keeps me up to date on the latest and greatest. He does not know what is going on. He thinks that I had a reaction to the antibiotic and was not surprised that my symptoms returned. he was surprised that I was surprised. He says they are tricky little beasts.
My symptoms are the same a little less intense on the cefdinir than when I was off antibiotics.
We have talked about trying something called "pulsing" That's where you treat for a couple of weeks and then go off treatment so the sneaky little critters come out and then blast them again. It makes sense on one level in that they are literally lying there safe in their cyst waiting. I can't think about it too much because it really is disgusting.
I had PCR blood test run by the infectious disease and he reports that it came back negative. Again not a surprised....Since I am considered "seronegative" Lyme.. FYI... my mother’s tests..... PCR ....everything on CSF all came negative. Her PCR Urine was the only thing positive. She also tested positive for babesia, semolina, and rocky mountain spotted fever. Testing CSF is not the best way to go with this disease. I have found that's the one thing all the doctors agree on.
All I can tell you is that before my GI issue I was 99% normal..my old life was back and now not so much.
Rebeccah
I know about the (PCR) Polymerace Chain Reaction test. My neuro ran this test on the spinal fluid taken from my Lumbar Puncture. I know he was checking for PML with this test, which came back negative, but I am not sure if they checked for Lyme or anything else with this test!
It took three weeks for the results to come back because they had to send it to a special lab to do the testing away from here. California, I believe.
I will ask my new neuro to read in my chart and see what all was tested for with the PCR, and I will get a copy of it to share with all of you when I get it!
~Santana~
It took three weeks for the results to come back because they had to send it to a special lab to do the testing away from here. California, I believe.
I will ask my new neuro to read in my chart and see what all was tested for with the PCR, and I will get a copy of it to share with all of you when I get it!
~Santana~
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