Aa
I think I have Lyme. My intro
I am 44 yrs. I was always healthy. 6 yrs ago I started to experience severe anxiety and panic out of the blue. It was 24/7 nonstop. I was placed on psych meds for a few yrs and told I have anxiety disorder. This made no sense to me as I've never been anxious before and had no reason to be,
As time passed, more symptoms began to develop. Hair loss, muscle weakness in my arms and legs, cognitive dysfunction (poor memory, poor concentration, poor problem solving), insomnia, appetite loss, low motivation, low energy, fatigue. I just felt very sick! This has been going on for 6 yrs,
I've been to 12 doctors. All labs are always normal. I even had the western blot 3 yrs ago and was told it was negative. I took matter into my own hands. After researching, I felt that I could have a thyroid problem. Even though my TSH was normal, my FT3 and FT4 were at the bottom of the normal range.
I flew to Houston to see a top thyroid doc. They put me on bioidentical hormones. Thyroid, adrenal, and progesterone. After 7 months, I still wasn't any better. They had a meeting about me. They said they suspected Lyme and I needed a better test called IGenex. My results are:
IGM: 18+, 23-25 IND, 31+, 39 IND, 41+, 83-93 IND
IGG: 31 IND, 39 IND, 41 ++
The Houston doctors told me they suspected Lyme and I need an LLMD.
I have been under the care of an LLMD for 3 months. So far I've seen no improvement. I've tried:
--- 1 month minocycline/malarone
--- 3 weeks doxy/flagyl
--- 1 week mino/flagyl
--- 3 weeks mino/ rifampin
My coinfection tests came back negative. But LLMD feels I may have ehrlichia.
I had severe psychological issues on the flagyl. Crying, depression, anxiety attacks,,,,,,it was awful. I had to stop! Since then, I can't get rid of the early morning anxiety attacks. So the flagyl definitely messed me up.
Does this sound like Lyme? I never had a CDC positive test. My IGenex test came back indeterminate, but I did have a few positive bands. I never saw a tick and I never had a rash or flu like symptoms. It just all started with severe anxiety. Like a complete nervous breakdown for no reason!
The abx meds have not made me feel any better. They just made my anxiety worse. I thought maybe it was a herx, but aren't herxes supposed to blow over? And then you should feel improvement after the herx. This never happened to me.
I just wanted to introduce myself and see what you all think.
Thank you.
As time passed, more symptoms began to develop. Hair loss, muscle weakness in my arms and legs, cognitive dysfunction (poor memory, poor concentration, poor problem solving), insomnia, appetite loss, low motivation, low energy, fatigue. I just felt very sick! This has been going on for 6 yrs,
I've been to 12 doctors. All labs are always normal. I even had the western blot 3 yrs ago and was told it was negative. I took matter into my own hands. After researching, I felt that I could have a thyroid problem. Even though my TSH was normal, my FT3 and FT4 were at the bottom of the normal range.
I flew to Houston to see a top thyroid doc. They put me on bioidentical hormones. Thyroid, adrenal, and progesterone. After 7 months, I still wasn't any better. They had a meeting about me. They said they suspected Lyme and I needed a better test called IGenex. My results are:
IGM: 18+, 23-25 IND, 31+, 39 IND, 41+, 83-93 IND
IGG: 31 IND, 39 IND, 41 ++
The Houston doctors told me they suspected Lyme and I need an LLMD.
I have been under the care of an LLMD for 3 months. So far I've seen no improvement. I've tried:
--- 1 month minocycline/malarone
--- 3 weeks doxy/flagyl
--- 1 week mino/flagyl
--- 3 weeks mino/ rifampin
My coinfection tests came back negative. But LLMD feels I may have ehrlichia.
I had severe psychological issues on the flagyl. Crying, depression, anxiety attacks,,,,,,it was awful. I had to stop! Since then, I can't get rid of the early morning anxiety attacks. So the flagyl definitely messed me up.
Does this sound like Lyme? I never had a CDC positive test. My IGenex test came back indeterminate, but I did have a few positive bands. I never saw a tick and I never had a rash or flu like symptoms. It just all started with severe anxiety. Like a complete nervous breakdown for no reason!
The abx meds have not made me feel any better. They just made my anxiety worse. I thought maybe it was a herx, but aren't herxes supposed to blow over? And then you should feel improvement after the herx. This never happened to me.
I just wanted to introduce myself and see what you all think.
Thank you.
and PS: keep in the back of your mind the possibility of getting a second opinion to check on your current doc's approach.
A few responses/comments:
You say, "I was hoping to have a positive response to the abx by now (3 months of treatment). Not necessarily 100%, but more like 20%." For me, and I think for many if not most of us, it's not a quick cure, but instead a slow road to recovery. Like any major illness or injury, it takes time for the body to build back up to normal. There was never a 'eureka! I'm well!' moment for me, and I think that's true for most of us, just based on what I've read here and elsewhere. Not only is the treatment lengthy, but so is the body's recuperation after treatment is done. Lyme is a major illness, caused by bacteria in the same family as syphilis, which is nothing to sneeze at.
"I would guess that most people who get well disappear from the forum." And that's the goal for you too: to get the heck out of here and back to real life. This site was my home away from home when I was ill, so I keep showing up just as payback to the bugz.
"How long were you sick before you were diagnosed?" About a year. I was relatively lucky that way ... sometimes it takes years to get a diagnosis, particularly if the symptoms are fairly low level. I was so messed up that I couldn't work at the level I needed to -- just couldn't concentrate or remember well. If I had had a lower level of symptoms, I could have muddled around for years before getting diagnosed.
Since I couldn't concentrate at work, there was really no choice for me except to keep going to one doc after another -- 20 total -- till one of the docs ran a Lyme test because everything else had been tested for. The Lyme test miraculously came back positive -- miraculous because given that I had been ill for over a year, the basic Western blot/ELISA tests often come back with a false negative result (meaning you are infected but the test says you're not). The doc (#20) who ran that test nevertheless told me ever so gently that I "could not possibly have Lyme" because she had patients with Lyme, and "they are all near death." Wrong, doc. Wrong, wrong, wrong.
But she gave me the one thing I needed: a diagnosis. So I took the test and went to a Lyme specialist, who confirmed the Lyme test and also tested and diagnosed me for babesiosis, similar to malaria and often carried by the 'Lyme' ticks. I was just lucky that the lousy standard Lyme test came back positive. (I remember one of the 20 docs I saw focusing on the fact that my only kid was leaving home for college, and the doc made clear that I must be looking for solace and attention as an 'empty nester'. That's the kind of garbage diagnosis that docs can come up with because too many of them don't understand Lyme at all.)
After about a year of treatment (first for babesia, then for Lyme), I was well but still tired, like after any major illness. It just takes time and attention to rebuilding your body with good sleep, exercise (but not to overdo it), and healthy food and vitamins etc.
So in answer to your question "How long did it take on abx before you noticed some small improvement?": it was so gradual that there was no moment when I was better -- it was very slow, and recuperation continued even after the meds were completed. Lyme is a major illness, and it just takes time.
You ask, "How long have you been off meds?" About five years.
I have the same concerns mojo expressed above about the short time your doc keeps you on one set of meds, but the reactions you have had to various meds may explain all the shifting around. There is a tendency among docs who don't understand Lyme well to give a short course of antibiotics (a few weeks, like you'd get for an earache) and think that's sufficient, thus the concern about your doc jumping around so much. Too many docs who don't understand Lyme do exactly that, but if your doc has other reasons (such as a bad reaction to a particular med), then that makes sense.
I was on flagyl and had no problems with it, but everyone is different, so it's good that your doc is on top of the situation.
You say, "I was told that I have neuro Lyme. Is that harder to treat? I hope I don't need a PICC!" I haven't read anywhere that there is a difference between 'neuro Lyme' and any other kind of Lyme -- it's all the same bacteria, but it settles in differently in different people: some have more joint pain, some have 'brain fog' (aka neuro Lyme). It is my impression that oral antibiotics are generally the first approach in treatment, but if that's not effective (due perhaps to the naturally low blood flow to the nervous system system), a PICC line may be advised. Lyme is a complex infection, and docs are wise to stay nimble.
(fwiw, I was not on malarone for babesia, but on other meds. There is not just one approach to treating Lyme and its co-infections, so don't expect your treatment to be just like everyone else's. Lyme is a developing area of medicine, and when the co-infections are factored in, the approaches can vary considerably. What's important is having an experienced and knowledgeable doc: many docs think they understand Lyme, but are going by outdated treatment approaches, like a couple weeks of doxycycline in a long-time Lyme infection -- doxy can work, but only very early in the illness, and often we don't know when we were first bitten -- could have been a year or more ago, and Lyme can still be lurking when you get *another* bite that finally sends you to the Lyme doc.
On the ILADS website, look for Burrascano's treatment guidelines -- not sure how recently they have been updated, but might have some good data for you. Dr Burrascano is well known and respected in the Lyme field, to my understanding.
You say, "I'm worried that 6 years untreated may have done some damage. I hope I can recover at least 75%." I say: go for it! Find the right doc, and you're on the path. Keep us posted, okay? We've all been where you are, one way or another. Take care!
You say, "I was hoping to have a positive response to the abx by now (3 months of treatment). Not necessarily 100%, but more like 20%." For me, and I think for many if not most of us, it's not a quick cure, but instead a slow road to recovery. Like any major illness or injury, it takes time for the body to build back up to normal. There was never a 'eureka! I'm well!' moment for me, and I think that's true for most of us, just based on what I've read here and elsewhere. Not only is the treatment lengthy, but so is the body's recuperation after treatment is done. Lyme is a major illness, caused by bacteria in the same family as syphilis, which is nothing to sneeze at.
"I would guess that most people who get well disappear from the forum." And that's the goal for you too: to get the heck out of here and back to real life. This site was my home away from home when I was ill, so I keep showing up just as payback to the bugz.
"How long were you sick before you were diagnosed?" About a year. I was relatively lucky that way ... sometimes it takes years to get a diagnosis, particularly if the symptoms are fairly low level. I was so messed up that I couldn't work at the level I needed to -- just couldn't concentrate or remember well. If I had had a lower level of symptoms, I could have muddled around for years before getting diagnosed.
Since I couldn't concentrate at work, there was really no choice for me except to keep going to one doc after another -- 20 total -- till one of the docs ran a Lyme test because everything else had been tested for. The Lyme test miraculously came back positive -- miraculous because given that I had been ill for over a year, the basic Western blot/ELISA tests often come back with a false negative result (meaning you are infected but the test says you're not). The doc (#20) who ran that test nevertheless told me ever so gently that I "could not possibly have Lyme" because she had patients with Lyme, and "they are all near death." Wrong, doc. Wrong, wrong, wrong.
But she gave me the one thing I needed: a diagnosis. So I took the test and went to a Lyme specialist, who confirmed the Lyme test and also tested and diagnosed me for babesiosis, similar to malaria and often carried by the 'Lyme' ticks. I was just lucky that the lousy standard Lyme test came back positive. (I remember one of the 20 docs I saw focusing on the fact that my only kid was leaving home for college, and the doc made clear that I must be looking for solace and attention as an 'empty nester'. That's the kind of garbage diagnosis that docs can come up with because too many of them don't understand Lyme at all.)
After about a year of treatment (first for babesia, then for Lyme), I was well but still tired, like after any major illness. It just takes time and attention to rebuilding your body with good sleep, exercise (but not to overdo it), and healthy food and vitamins etc.
So in answer to your question "How long did it take on abx before you noticed some small improvement?": it was so gradual that there was no moment when I was better -- it was very slow, and recuperation continued even after the meds were completed. Lyme is a major illness, and it just takes time.
You ask, "How long have you been off meds?" About five years.
I have the same concerns mojo expressed above about the short time your doc keeps you on one set of meds, but the reactions you have had to various meds may explain all the shifting around. There is a tendency among docs who don't understand Lyme well to give a short course of antibiotics (a few weeks, like you'd get for an earache) and think that's sufficient, thus the concern about your doc jumping around so much. Too many docs who don't understand Lyme do exactly that, but if your doc has other reasons (such as a bad reaction to a particular med), then that makes sense.
I was on flagyl and had no problems with it, but everyone is different, so it's good that your doc is on top of the situation.
You say, "I was told that I have neuro Lyme. Is that harder to treat? I hope I don't need a PICC!" I haven't read anywhere that there is a difference between 'neuro Lyme' and any other kind of Lyme -- it's all the same bacteria, but it settles in differently in different people: some have more joint pain, some have 'brain fog' (aka neuro Lyme). It is my impression that oral antibiotics are generally the first approach in treatment, but if that's not effective (due perhaps to the naturally low blood flow to the nervous system system), a PICC line may be advised. Lyme is a complex infection, and docs are wise to stay nimble.
(fwiw, I was not on malarone for babesia, but on other meds. There is not just one approach to treating Lyme and its co-infections, so don't expect your treatment to be just like everyone else's. Lyme is a developing area of medicine, and when the co-infections are factored in, the approaches can vary considerably. What's important is having an experienced and knowledgeable doc: many docs think they understand Lyme, but are going by outdated treatment approaches, like a couple weeks of doxycycline in a long-time Lyme infection -- doxy can work, but only very early in the illness, and often we don't know when we were first bitten -- could have been a year or more ago, and Lyme can still be lurking when you get *another* bite that finally sends you to the Lyme doc.
On the ILADS website, look for Burrascano's treatment guidelines -- not sure how recently they have been updated, but might have some good data for you. Dr Burrascano is well known and respected in the Lyme field, to my understanding.
You say, "I'm worried that 6 years untreated may have done some damage. I hope I can recover at least 75%." I say: go for it! Find the right doc, and you're on the path. Keep us posted, okay? We've all been where you are, one way or another. Take care!
I just want to add that I was lucky that my Bartonella and mycoplasma co-infections came back positive but my Babesia came back negative although I had the symptoms very badly. Co-infections are usually diagnosed clinically, meaning via symptoms.
It's not unusual not to feel better after only a few months. I am starting my 4th year of treatment and just starting to feel better.
My LLMD treated me for Lyme and one co-infection at the same time. It looks like your LLMd isn't giving you enough time on one medication, you are switching to soon. The Malarone is for BABESIA which is a malaria like co-infection. I was on that for 6 months. Something to think about.
It's not unusual not to feel better after only a few months. I am starting my 4th year of treatment and just starting to feel better.
My LLMD treated me for Lyme and one co-infection at the same time. It looks like your LLMd isn't giving you enough time on one medication, you are switching to soon. The Malarone is for BABESIA which is a malaria like co-infection. I was on that for 6 months. Something to think about.
Wow Jackie! Thank you so much for your thorough response!
I do think that Lyme explains many, if not all, of my symptoms. I was hoping to have a positive response to the abx by now (3 months of treatment). Not necessarily 100%, but more like 20%. Just something to let me know that I'm on the right track.
I noticed from reading on this wonderful forum, that you are in remission and have been well for some time! It is so kind of you to stick around and help others. I would guess that most people who get well disappear from the forum. It's great to have encouragement from someone who actually beat it!
How long were you sick before you were diagnosed? How long did it take on abx before you noticed some small improvement? How long have you been off meds?
My LLMD is in Albany, NY. They are pretty well known around here. They train in Germany several times a year and are up to speed on ILADS protocols. I had to hop around a bit on my meds because of reactions to the different abx. The flagyl made me quite mentally ill! Herx? Not sure, but it was scary! Lol.
I was told that I have neuro Lyme. Is that harder to treat? I hope I don't need a PICC!
The brain fog and muscle weakness are bad enough, but anxiety is the worst! I have been on magnesium citrate for a few years now. That is a very important supplement! Many people don't realize it.
I'm going to keep reading old posts on this forum to see what else I can learn about this blasted disease. It's encouraging to know that you beat it. I will search for more success stories to give me hope. I'm worried that 6 years untreated may have done some damage. I hope I can recover at least 75%.
Thanks again, Jackie! You are so sweet to help me.
I do think that Lyme explains many, if not all, of my symptoms. I was hoping to have a positive response to the abx by now (3 months of treatment). Not necessarily 100%, but more like 20%. Just something to let me know that I'm on the right track.
I noticed from reading on this wonderful forum, that you are in remission and have been well for some time! It is so kind of you to stick around and help others. I would guess that most people who get well disappear from the forum. It's great to have encouragement from someone who actually beat it!
How long were you sick before you were diagnosed? How long did it take on abx before you noticed some small improvement? How long have you been off meds?
My LLMD is in Albany, NY. They are pretty well known around here. They train in Germany several times a year and are up to speed on ILADS protocols. I had to hop around a bit on my meds because of reactions to the different abx. The flagyl made me quite mentally ill! Herx? Not sure, but it was scary! Lol.
I was told that I have neuro Lyme. Is that harder to treat? I hope I don't need a PICC!
The brain fog and muscle weakness are bad enough, but anxiety is the worst! I have been on magnesium citrate for a few years now. That is a very important supplement! Many people don't realize it.
I'm going to keep reading old posts on this forum to see what else I can learn about this blasted disease. It's encouraging to know that you beat it. I will search for more success stories to give me hope. I'm worried that 6 years untreated may have done some damage. I hope I can recover at least 75%.
Thanks again, Jackie! You are so sweet to help me.
Another thought:
You say above: "Does this sound like Lyme? I never had a CDC positive test."
CDC tests are not the standard a good Lyme doc would likely look to for diagnosis. CDC is in the business of tracking diseases, not treating them, so the CDC test standards are very, very high before the test is considered positive for Lyme, to be certain that the scientific tracking data on the spread of various illnesses is highly accurate.
'Scientific tracking data' is NOT the same thing as 'diagnosing a patient'. Therefore using CDC tracking standards to diagnose a patient is not useful.
Any doc who uses CDC standards for diagnosis is not one I'd send my dog to, much less my family. /end rant/
You say above: "Does this sound like Lyme? I never had a CDC positive test."
CDC tests are not the standard a good Lyme doc would likely look to for diagnosis. CDC is in the business of tracking diseases, not treating them, so the CDC test standards are very, very high before the test is considered positive for Lyme, to be certain that the scientific tracking data on the spread of various illnesses is highly accurate.
'Scientific tracking data' is NOT the same thing as 'diagnosing a patient'. Therefore using CDC tracking standards to diagnose a patient is not useful.
Any doc who uses CDC standards for diagnosis is not one I'd send my dog to, much less my family. /end rant/
[continued from previous message pane]
You say: "Does this sound like Lyme? I never had a CDC positive test." Many people don't, but have Lyme nevertheless. The reason is that the tests which are measured by CDC standards are structured to rely on your immune system reaction to make the diagnosis. Sounds reasonable, but the problem is that Lyme bacteria have the ability to *suppress your immune system*, so the test may be negative, but you could still be definitely infected.
You say: "My IGenex test came back indeterminate, but I did have a few positive bands." The different bands have different meanings. Some are more important than others. If you go to the IGeneX website, there is a list of what each band means and which ones are more important in determining whether it's Lyme. And also note: an 'indeterminate' reaction is NOT a negative reaction! It is a weak positive, and could be evidence of Lyme. A good Lyme doc would know that and take it into account.
You say: "I never saw a tick and I never had a rash or flu like symptoms. It just all started with severe anxiety. Like a complete nervous breakdown for no reason!" I never saw tick or rash either. I just felt like I had a mild case of the flu and a hangover, 24/7. It was Lyme and babesiosis.
You say: "The abx meds have not made me feel any better. They just made my anxiety worse." It takes months to treat Lyme and its coinfections, so that may be the lack of response to treatment, but the anxiety may be lack of magnesium and also a symptom of the infection(s) you have. Thus the suggestion of finding another doc.
You say: "I thought maybe it was a herx, but aren't herxes supposed to blow over? And then you should feel improvement after the herx. This never happened to me." Generally speaking, that's right, but it's not a straight shot from ill to sparkly wellness. It's going to take time -- months -- but it also needs to be (1) the right diagnosis and (2) the right meds for the right length of time and in the right order.
Here's what I would do:
1 -- get copies of ALL prior tests done to date so you can show them to your *new* doc. I think by law you are entitled to have them, free of charge, from the doc. You paid for the tests, so you're entitled to them. If the doc's office wants to know why, just say, 'Oh, I'm just tidying up my personal files and realized I probably don't have everything.' Then always keep your OWN set of all such things going forward just in case.
2 -- get a new Lyme specialist for a new look at your files and your condition. If you don't have the $, ask your family for a loan or a Xmas present. And I wouldn't go to Texas -- there is a mindset among the Texas medical authorities that Lyme is nothing much to worry about, and a couple weeks of doxy will fix you right up. Uh, not so much. There are excellent Lyme docs in NY. If you need help finding one, let us know. We don't post LLMD's names here in public, to protect them from cranky medical boards who don't believe in Lyme as a serious disease, but we can do private messages through this system.
Stay in touch, and let us know how we can help. Take care!
You say: "Does this sound like Lyme? I never had a CDC positive test." Many people don't, but have Lyme nevertheless. The reason is that the tests which are measured by CDC standards are structured to rely on your immune system reaction to make the diagnosis. Sounds reasonable, but the problem is that Lyme bacteria have the ability to *suppress your immune system*, so the test may be negative, but you could still be definitely infected.
You say: "My IGenex test came back indeterminate, but I did have a few positive bands." The different bands have different meanings. Some are more important than others. If you go to the IGeneX website, there is a list of what each band means and which ones are more important in determining whether it's Lyme. And also note: an 'indeterminate' reaction is NOT a negative reaction! It is a weak positive, and could be evidence of Lyme. A good Lyme doc would know that and take it into account.
You say: "I never saw a tick and I never had a rash or flu like symptoms. It just all started with severe anxiety. Like a complete nervous breakdown for no reason!" I never saw tick or rash either. I just felt like I had a mild case of the flu and a hangover, 24/7. It was Lyme and babesiosis.
You say: "The abx meds have not made me feel any better. They just made my anxiety worse." It takes months to treat Lyme and its coinfections, so that may be the lack of response to treatment, but the anxiety may be lack of magnesium and also a symptom of the infection(s) you have. Thus the suggestion of finding another doc.
You say: "I thought maybe it was a herx, but aren't herxes supposed to blow over? And then you should feel improvement after the herx. This never happened to me." Generally speaking, that's right, but it's not a straight shot from ill to sparkly wellness. It's going to take time -- months -- but it also needs to be (1) the right diagnosis and (2) the right meds for the right length of time and in the right order.
Here's what I would do:
1 -- get copies of ALL prior tests done to date so you can show them to your *new* doc. I think by law you are entitled to have them, free of charge, from the doc. You paid for the tests, so you're entitled to them. If the doc's office wants to know why, just say, 'Oh, I'm just tidying up my personal files and realized I probably don't have everything.' Then always keep your OWN set of all such things going forward just in case.
2 -- get a new Lyme specialist for a new look at your files and your condition. If you don't have the $, ask your family for a loan or a Xmas present. And I wouldn't go to Texas -- there is a mindset among the Texas medical authorities that Lyme is nothing much to worry about, and a couple weeks of doxy will fix you right up. Uh, not so much. There are excellent Lyme docs in NY. If you need help finding one, let us know. We don't post LLMD's names here in public, to protect them from cranky medical boards who don't believe in Lyme as a serious disease, but we can do private messages through this system.
Stay in touch, and let us know how we can help. Take care!
Welcome to MedHelp --
You're in good company here -- we've all dealt (or are still dealing) with Lyme.
Some comments on your post:
"I am 44 yrs. I was always healthy. 6 yrs ago I started to experience severe anxiety and panic out of the blue. It was 24/7 nonstop. I was placed on psych meds for a few yrs and told I have anxiety disorder. This made no sense to me as I've never been anxious before and had no reason to be,"
-- Anxiety is a common symptom of Lyme, partly because the Lyme bacteria use magnesium (Mg) in their reproductive process and can leave you deficient. Anxiety is among the symptoms of Mg deficiency, which is not (from what I read) all that uncommon, since it is often low in the American diet. I began taking Mg when I had Lyme, and some years later now, I still take it as a supplement every day. Docs (who often think vitamins are for sissies) often aren't much interested, but some are. My Lyme doc is a great doc, but he wasn't at all interested in nutrition etc. So ... in addition to pursuing whether you have Lyme, you might in the meantime try some Mg supplements to see if it helps (but be sure to tell your docs you are taking it and how much, so they can take that into account). Any kind of Mg that ends in '-ate' [Mg malate, aspartate, citrate, etc.] are said to be most absorbable, and *not* the blend of Mg and calcium often sold in drugstores -- dunno why, but the blend doesn't have as much effect, tho it may be quality or some other aspect. Be sure to tell you docs that you are on Mg and how much so they can take it into account. I told one doc (not my Lyme doc) that I was taking Mg supplements and he positively sneered at me -- oh well! I'm still taking it. :)
As to your persistent symptoms, be sure to tell you new Lyme doc all of it and for how long.
You say: "I've been to 12 doctors. All labs are always normal." Yeah, I did the rounds too. Don't give up till you've consulted with a doc who really understands Lyme -- most docs don't.
You say: "I even had the western blot 3 yrs ago and was told it was negative." That's not unusual. The test is too often not accurate and can miss real, true, miserable Lyme infections.
You say: "I took matter into my own hands. After researching, I felt that I could have a thyroid problem. Even though my TSH was normal, my FT3 and FT4 were at the bottom of the normal range." Good for you!
You say: "I flew to Houston to see a top thyroid doc. ... They said they suspected Lyme and I needed a better test called IGenex." This is remarkable! Docs in TX are often discouraged from diagnosing Lyme, and big points to the doc for running the tests through IGeneX, whose tests do not rely on measuring your immune system's response to the presence of Lyme bacteria (as do the more usual Western blot and ELISA tests you probably already had). IGeneX tests look instead for bits of DNA from the Lyme bacteria: a direct test, rather than the indirect W.blot/ELISA tests.
You say: "My results are:
IGM: 18+, 23-25 IND, 31+, 39 IND, 41+, 83-93 IND
IGG: 31 IND, 39 IND, 41 ++"
Some commentary I have found in various places online about the meaning of the various bands are below. IgM and IgG are the chemicals (Ig = immunoglobulin) your immune system makes in response to an infection (including Lyme). IgM indicates a more recent infection, and IgG indicates an older infection, but both are indicators and can be present at the same time.
Specifically concerning Lyme, here is the meaning of each, whether IgG or IgM:
=====================================
Band 18 --- highly specific to Lyme; many Lyme docs say is this band alone is positive, you have Lyme
Band 23-25 --- this detects outer surface protein C (OspC), which is a protein found on the outside of Lyme bacteria, and ONLY on Lyme bacteria (that is, it can't be anything else)
Band 31 --- outer surface protein A (OspA) -- could be Lyme or some other bacteria
Band 39 --- this is a major protein of the little whip-like tail of the Lyme bacteria, and is specific to Lyme (meaning only Lyme would cause a positive reaction on this band)
Band 41--- this is a protein common to all spiral-shaped bacteria, of which Lyme is one. So it could be Lyme or could be something else, but given the other positive reactions on your test, it would tend to support a Lyme infection
Band 83-93 -- this is a specific antigen for Lyme bacteria, meaning no other bacteria would cause this band to be positive
======================================
You say, "The Houston doctors told me they suspected Lyme and I need an LLMD." Good. It's what I would do.
Sometimes getting a diagnosis of Lyme is the most difficult step, but it sounds like you're having problems with the treatment:
=====================================
"I have been under the care of an LLMD for 3 months. So far I've seen no improvement. I've tried:
--- 1 month minocycline/malarone
--- 3 weeks doxy/flagyl
--- 1 week mino/flagyl
--- 3 weeks mino/ rifampin
"My coinfection tests came back negative. But LLMD feels I may have ehrlichia."
===========================
I'm not a doctor and have zero medical training, but after dealing with Lyme and a co-infection myself and with someone else in my family, I would suggest you quietly get a second opinion from another Lyme specialist. Lyme is a new and emerging disease, and the medical community is in total chaos. Many docs mean well (as I am sure yours does), but not all docs are up to speed or have the ability to understand and stay up-to-date on Lyme research and treatment. There is no test required to be a Lyme specialist or call oneself an LLMD: it's not a degree to a title -- it's just patient slang for a doc who may understand better than 'mainstream' docs how to diagnose and treat Lyme and its co-infections. Any doc can claim to be an LLMD.
Here's another reason I would find another LLMD: the meds your doc prescribed in such short bursts sound odd to me. I had Lyme and a co-infection (babesiosis), and I was treated for ~4 months just for babesia, and then about that same time period again just for Lyme. The jumping around from one med to another as your doc is doing isn't something I've heard of, but maybe it's a new trend...but here's why it seems odd to me: Lyme bacteria have a VERY slow reproductive cycle, unlike most bacteria that we humans run into, which is why treatment normally lasts for *months*, to hammer the bacteria when its cell wall is disrupted for reproduction: the slower the reproduction rate, the fewer opportunities there are to kill the bacteria.
Because of the mix of Lyme and co-infections, it takes a thoughtful and experienced LLMD to figure out how to best structure the treatment, and there is no one right way: Lyme is a developing field, and there is no standard approach to diagnosis and treatment.
In your situation, I would find another Lyme specialist for a second opinion. I know you probably don't feel like going through all that, or spend the money and time, but it is what I would do. Lyme affects emotion via the endocrine system, so it may be not only the meds, but also your body's natural reaction -- a quick search online for 'flagyl side effects anxiety' came up with a bunch of hits -- and the combination must indeed be miserable. Be sure your docs (current and future) are aware of this reaction you have had.
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You're in good company here -- we've all dealt (or are still dealing) with Lyme.
Some comments on your post:
"I am 44 yrs. I was always healthy. 6 yrs ago I started to experience severe anxiety and panic out of the blue. It was 24/7 nonstop. I was placed on psych meds for a few yrs and told I have anxiety disorder. This made no sense to me as I've never been anxious before and had no reason to be,"
-- Anxiety is a common symptom of Lyme, partly because the Lyme bacteria use magnesium (Mg) in their reproductive process and can leave you deficient. Anxiety is among the symptoms of Mg deficiency, which is not (from what I read) all that uncommon, since it is often low in the American diet. I began taking Mg when I had Lyme, and some years later now, I still take it as a supplement every day. Docs (who often think vitamins are for sissies) often aren't much interested, but some are. My Lyme doc is a great doc, but he wasn't at all interested in nutrition etc. So ... in addition to pursuing whether you have Lyme, you might in the meantime try some Mg supplements to see if it helps (but be sure to tell your docs you are taking it and how much, so they can take that into account). Any kind of Mg that ends in '-ate' [Mg malate, aspartate, citrate, etc.] are said to be most absorbable, and *not* the blend of Mg and calcium often sold in drugstores -- dunno why, but the blend doesn't have as much effect, tho it may be quality or some other aspect. Be sure to tell you docs that you are on Mg and how much so they can take it into account. I told one doc (not my Lyme doc) that I was taking Mg supplements and he positively sneered at me -- oh well! I'm still taking it. :)
As to your persistent symptoms, be sure to tell you new Lyme doc all of it and for how long.
You say: "I've been to 12 doctors. All labs are always normal." Yeah, I did the rounds too. Don't give up till you've consulted with a doc who really understands Lyme -- most docs don't.
You say: "I even had the western blot 3 yrs ago and was told it was negative." That's not unusual. The test is too often not accurate and can miss real, true, miserable Lyme infections.
You say: "I took matter into my own hands. After researching, I felt that I could have a thyroid problem. Even though my TSH was normal, my FT3 and FT4 were at the bottom of the normal range." Good for you!
You say: "I flew to Houston to see a top thyroid doc. ... They said they suspected Lyme and I needed a better test called IGenex." This is remarkable! Docs in TX are often discouraged from diagnosing Lyme, and big points to the doc for running the tests through IGeneX, whose tests do not rely on measuring your immune system's response to the presence of Lyme bacteria (as do the more usual Western blot and ELISA tests you probably already had). IGeneX tests look instead for bits of DNA from the Lyme bacteria: a direct test, rather than the indirect W.blot/ELISA tests.
You say: "My results are:
IGM: 18+, 23-25 IND, 31+, 39 IND, 41+, 83-93 IND
IGG: 31 IND, 39 IND, 41 ++"
Some commentary I have found in various places online about the meaning of the various bands are below. IgM and IgG are the chemicals (Ig = immunoglobulin) your immune system makes in response to an infection (including Lyme). IgM indicates a more recent infection, and IgG indicates an older infection, but both are indicators and can be present at the same time.
Specifically concerning Lyme, here is the meaning of each, whether IgG or IgM:
=====================================
Band 18 --- highly specific to Lyme; many Lyme docs say is this band alone is positive, you have Lyme
Band 23-25 --- this detects outer surface protein C (OspC), which is a protein found on the outside of Lyme bacteria, and ONLY on Lyme bacteria (that is, it can't be anything else)
Band 31 --- outer surface protein A (OspA) -- could be Lyme or some other bacteria
Band 39 --- this is a major protein of the little whip-like tail of the Lyme bacteria, and is specific to Lyme (meaning only Lyme would cause a positive reaction on this band)
Band 41--- this is a protein common to all spiral-shaped bacteria, of which Lyme is one. So it could be Lyme or could be something else, but given the other positive reactions on your test, it would tend to support a Lyme infection
Band 83-93 -- this is a specific antigen for Lyme bacteria, meaning no other bacteria would cause this band to be positive
======================================
You say, "The Houston doctors told me they suspected Lyme and I need an LLMD." Good. It's what I would do.
Sometimes getting a diagnosis of Lyme is the most difficult step, but it sounds like you're having problems with the treatment:
=====================================
"I have been under the care of an LLMD for 3 months. So far I've seen no improvement. I've tried:
--- 1 month minocycline/malarone
--- 3 weeks doxy/flagyl
--- 1 week mino/flagyl
--- 3 weeks mino/ rifampin
"My coinfection tests came back negative. But LLMD feels I may have ehrlichia."
===========================
I'm not a doctor and have zero medical training, but after dealing with Lyme and a co-infection myself and with someone else in my family, I would suggest you quietly get a second opinion from another Lyme specialist. Lyme is a new and emerging disease, and the medical community is in total chaos. Many docs mean well (as I am sure yours does), but not all docs are up to speed or have the ability to understand and stay up-to-date on Lyme research and treatment. There is no test required to be a Lyme specialist or call oneself an LLMD: it's not a degree to a title -- it's just patient slang for a doc who may understand better than 'mainstream' docs how to diagnose and treat Lyme and its co-infections. Any doc can claim to be an LLMD.
Here's another reason I would find another LLMD: the meds your doc prescribed in such short bursts sound odd to me. I had Lyme and a co-infection (babesiosis), and I was treated for ~4 months just for babesia, and then about that same time period again just for Lyme. The jumping around from one med to another as your doc is doing isn't something I've heard of, but maybe it's a new trend...but here's why it seems odd to me: Lyme bacteria have a VERY slow reproductive cycle, unlike most bacteria that we humans run into, which is why treatment normally lasts for *months*, to hammer the bacteria when its cell wall is disrupted for reproduction: the slower the reproduction rate, the fewer opportunities there are to kill the bacteria.
Because of the mix of Lyme and co-infections, it takes a thoughtful and experienced LLMD to figure out how to best structure the treatment, and there is no one right way: Lyme is a developing field, and there is no standard approach to diagnosis and treatment.
In your situation, I would find another Lyme specialist for a second opinion. I know you probably don't feel like going through all that, or spend the money and time, but it is what I would do. Lyme affects emotion via the endocrine system, so it may be not only the meds, but also your body's natural reaction -- a quick search online for 'flagyl side effects anxiety' came up with a bunch of hits -- and the combination must indeed be miserable. Be sure your docs (current and future) are aware of this reaction you have had.
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