Aa
lyme??
Is it possible to have lyme after being treated with doxy. antibiotic. I have all of the symptoms everyone on here is talking about and have had for several months getting worse. I was in the hospital twice. Mri cat scans blood work you name it all normal. Lyme test was also negative but from what I read on here its not always accurate. My dr gave me antibiotics to see if they helped and they did seem to help some but after being off of them a few days its getting worse again. I have severe low back and body aches hip pain. Sharp pains in my chest and abdoen that seems to travel daily. Muscle twitching, i get lightheaded or dizzy often. The only thing that came back positive in all of this has been ebv. But my r says after all this time I should be improving if it were just that. I was a really healthy 33 year old male who ran and exercised every day. Now i cant leave the house. Any info is appreciated!
I live here in Florida and also ran into the same thing after the initial 3 week course of doxy didn't stick. In fact, the infectious disease dr. I was referred to told me "there's no such thing as Lyme in Florida", and when I asked if we could look into it at my appointment, since I was given an immediate clinical diagnosis for it with a prominent "bull's eye rash", he said he had to cancel my appointment and hung up on me. If you're going to the LLMD I found in the Orlando area, I'm sure he'll find the right treatment plan for you, and get you on your way. Just be happy you didn't go nearly 2 years of trying to ignore the problem and live with it like me. After gradually worsening symptoms during flare-ups became intolerable I finally became pro-active about researching what's going on with me and found an LLMD here in the Orlando area, from what I'm told one of the only of a few in the state who know what they're doing. I'll be there Friday for my IV Rocephin. Dr. B's Guidelines are a good place to start. Also check out the full length PBS documentary 'UNDER OUR SKIN' on Youtube, and if you can, check out the book by Dr. Horowitz, 'Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease'.
I found a LLMD in orlando that can fit me in on friday! I have a appointment for dec 9th here in jax with a different one but I am going to go ahead and drive down to orlando friday and see what he has to say!
BTW I forgot to mention she also wanted to check me for HIV and hepatitis. I just laughed and said thats fine with me. At least this way I will have those results to show the next doctor so they cant say its something like that.
Wow, that really puts the whole crazy Lyme world into a nutsheel, doesn't it?!
At least the doc was finally honest enough to say he didn't really know what he's doing. After you're treated and well, you might consider sending him a note laying out what treatment you were given that was successful -- maybe it will open new doors for him and therefore his future patients. Just a thought ... and I wouldn't identify the doc you end up going to, just in case the Fla medical board likes to crack down on LLMDs. Consider it your victory dance. Heh.
If not mentioned previously, I just now searched online for -- florida lyme disease doctors -- and got lots of links, so if your regular doc's source doesn't work out, there seem to be quite a few options. Also, searching for -- florida lyme disease association -- just now brought up some solid-looking leads as well.
You go!!! Keep us posted. :) Ah, the wild, wacky world of Lyme!
At least the doc was finally honest enough to say he didn't really know what he's doing. After you're treated and well, you might consider sending him a note laying out what treatment you were given that was successful -- maybe it will open new doors for him and therefore his future patients. Just a thought ... and I wouldn't identify the doc you end up going to, just in case the Fla medical board likes to crack down on LLMDs. Consider it your victory dance. Heh.
If not mentioned previously, I just now searched online for -- florida lyme disease doctors -- and got lots of links, so if your regular doc's source doesn't work out, there seem to be quite a few options. Also, searching for -- florida lyme disease association -- just now brought up some solid-looking leads as well.
You go!!! Keep us posted. :) Ah, the wild, wacky world of Lyme!
Well I got my IGENEX kit in the mail friday. I did the pcr test at the local lab here and it came back negative. But I am told by IGENEX that the antibiotics would have affected it. So I guess I have to quit taking the doxy which is going to be bad if I get back like I was last time I stopped taking them. I just got back from the infectious disease dr who said " you do not have lyme" I responded with if thats not it them please test me for what ever else you think it could be. After I showed her the Igenex paperwork she tells me " I dont really know that much about lyme" LOL Its amazing how she could make such a bold statement that I dont have it then tell me ten min later she doesnt know that much about it. Lucky for me my regular dr is going to sign the parers for me to be tested by IGENEX. and I think I found a llmd here in jacksonville. waiting to hear from them on a appointment.
It could, I think, but your doc can take that into account, and doxy doesn't, to my knowledge, treat co-infections you might have, so that would likely still show in test results.
Just be sure your doc is up to speed on things that happened before you
walked in his door. Hang in there!
Just be sure your doc is up to speed on things that happened before you
walked in his door. Hang in there!
Well I sent my blood off tuesday to have the pcr test but I was just reading another forum and they were talking about antibiotics affecting the results. I finished the round of doxy early last week. Do you think or know if t could affect the results? I thought I may have been finally getting some where with this, I hope it doesnt mes it up.
and PS, though there is an effort here not to name names of LLMDs in public, there are exceptions, such as Dr Burrascano and his guidelines. He is very well known in the Lyme community, and given his publishing efforts etc, the mention of his Guidelines is not 'outing' him to the opposition. It is only with very well known LLMDs already 'out' by their own actions who are mentioned by name here.
Where it gets dodgy is, for example: my LLMD is very well known in the patient community and also among MDs and researchers, because he has chosen to be out front, but I don't post his name here, because it doesn't add anything to the discussion and could inadvertently cause problems for him if I say something that is wrong but appears to have come from him.
All this cloak and dagger stuff is really tiresome, but protecting LLMDs is necessary so that we still have access to them overall. It's not nice out there sometimes. fwiw.
Where it gets dodgy is, for example: my LLMD is very well known in the patient community and also among MDs and researchers, because he has chosen to be out front, but I don't post his name here, because it doesn't add anything to the discussion and could inadvertently cause problems for him if I say something that is wrong but appears to have come from him.
All this cloak and dagger stuff is really tiresome, but protecting LLMDs is necessary so that we still have access to them overall. It's not nice out there sometimes. fwiw.
You're very welcome! I hope your doc took my comments in stride -- not all docs are so open-minded. I like him already. :)
The PCR test is usually run through IGeneX labs in Palo Alto CA, and it may be proprietary to them. My doc used IGeneX, and so do many others. If your doc has any questions, he can call them -- they are a smallish operation, and very helpful. They have a website that's useful too. Just search online for IGeneX.
Also, your doc (and you, if you're up for it, whether now or later) might take a look at Burrascano's Guidelines posted on the ILADS website. Dr Burrascano is well known and respected in the Lyme field. Searching online for 'Burrascano guidelines' will pop up a number of links.
The full name of his guidelines: "ADVANCED TOPICS IN LYME DISEASE. DIAGNOSTIC HINTS AND TREATMENT. GUIDELINES FOR LYME AND OTHER TICKBORNE ILLNESSES." I don't know how often they are updated, but it's a good primer on Lyme and its common co-infections [the bonus diseases the 'Lyme' ticks often carry].
Here's another reference that popped up in my search online: "Dr. Burrascano's 16th Edition (October 2008) of his Advanced Topics in Lyme Disease focuses on diagnostic hints and treatment guidelines for Lyme ..."
Dr B is not the only doc in the Lyme field, but he is well known and his writings are accessible and understandable by both medical personnel and patients.
You go! Keep us posted.
The PCR test is usually run through IGeneX labs in Palo Alto CA, and it may be proprietary to them. My doc used IGeneX, and so do many others. If your doc has any questions, he can call them -- they are a smallish operation, and very helpful. They have a website that's useful too. Just search online for IGeneX.
Also, your doc (and you, if you're up for it, whether now or later) might take a look at Burrascano's Guidelines posted on the ILADS website. Dr Burrascano is well known and respected in the Lyme field. Searching online for 'Burrascano guidelines' will pop up a number of links.
The full name of his guidelines: "ADVANCED TOPICS IN LYME DISEASE. DIAGNOSTIC HINTS AND TREATMENT. GUIDELINES FOR LYME AND OTHER TICKBORNE ILLNESSES." I don't know how often they are updated, but it's a good primer on Lyme and its common co-infections [the bonus diseases the 'Lyme' ticks often carry].
Here's another reference that popped up in my search online: "Dr. Burrascano's 16th Edition (October 2008) of his Advanced Topics in Lyme Disease focuses on diagnostic hints and treatment guidelines for Lyme ..."
Dr B is not the only doc in the Lyme field, but he is well known and his writings are accessible and understandable by both medical personnel and patients.
You go! Keep us posted.
I went to my dr this afternoon and showed him what you sent me. You were right the first test they ran was the standard blot antibodies test. I showed him the PCR and the lab he uses can check for it so I have to go give blood tomorrow. Hopefully I will find a answer. Thanks so much for the info!
Welcome (?) to MedHelp Lyme -- sorry to hear what you are going through, but I would ask the questions you are asking, and keep going till you get satisfying answers. No one here is medically trained that I know of, but we're glad to share our collected thoughts and experiences.
Short answer: Yes, it is possible to have Lyme after doxy treatment. The reason is that doxy works if taken almost immediately after infection with Lyme, but at a fairly early point after infection, the Lyme bacteria hide in the body (in cartilage and in shielded areas they create, called 'biofilms') that keep the antibiotics from reaching the bacteria. Other antibiotics are needed to breach the biofilms, but docs who aren't Lyme specialists don't know this. There is a huge split in the medical community on how to diagnose and treat Lyme, and you may be running smack into that. It's happened to many of us.
Docs who don't understand this are following what they believe is the right thing to do, and since there are plenty of well respected docs who believe doxy is enough, things are changing slowly in the medical field.
There are docs who think bigger thoughts and take more aggressive and appropriate action against Lyme (and will also test, based on your symptoms, for other infections the 'Lyme' ticks also carry about half the time). You'll see the term 'Lyme-literate MD' ('LLMD' for short), which is not a title or degree, but shorthand patients use to denote a doc who really understands Lyme.
The docs you have been seeing (apparently not LLMDs) are likely lined up with the IDSA, Infectious Disease Society of America, a voluntary group for docs who practice in the area of ... yes, infectious diseases. Because these docs are supposedly expert, all other docs tend to fall in line with IDSA approaches to diagnosis and treatment, which you were given.
There is another, separate voluntary group for LLMDs, called the International Lyme and Associated Diseases Society (ILADS). They have a website and a growing number of member docs. My Lyme doc is a member, and finding a doc who is a member of ILADS is a good place to start for a second opinion. If you email to
-- contact [at] ILADS [doc] org] --
and tell them where you are ("near [Tulsa OK]") and how far you can travel, they can send you names of docs who are ILADS members. There are some ILADS docs who are ... odd, so if you get one that doesn't seem like a good fit, go to another. Diagnosing and treating Lyme can take a while (my treatment was almost a year, some are longer, for good reasons I won't go into now), so it's a doc you want to be comfortable with and can get to for appointments (which were about once a month for me, once diagnosis was established).
If you like, you can also post here a new message so it catches the eye, saying generally where you are ('Need LLMD near [Dallas TX]'). Anyone here who has a recommendation can send you a private message through this website. We do NOT post the names of Lyme docs here in the open, because in some states, docs are at risk of losing their medical licenses for having the nerve to think for themselves when it comes to Lyme.
MRIs and CAT scans and the usual blood tests are not particularly useful for diagnosing Lyme, as you have learned the hard way. LLMDs sometimes use another scan called SPECT, which looks for areas of low blood flow in the brain due to swelling caused by the Lyme bacteria, but the basic tests are blood tests looking for Lyme bacteria in the blood and/or for the immune system's reaction to the presence of Lyme DNA.
The 'usual tests' (Western blot and ELISA) are probably what you had, and they are not especially accurate, because the Lyme bacteria have the ability to suppress the immune system, and the W.blot and ELISA tests rely on finding antibodies against Lyme in your blood. So a 'false negative' result on the 'usual' tests makes the tests useless, but nonLLMDs ignore that for reasons I don't understand, tho 'stubborn ignorance' is a phrase that comes to mind.)
My doc used Wblot and ELISA, as well as another test called PCR, short for polymerase chain reaction, which looks not for the immune system reaction to Lyme, but looks for actual DNA of the Lyme bacteria: direct evidence of an infection.
In your situation, I would post here asking for any leads to a good LLMD (start a new thread saying 'Need LLMD near [your city and state]' and anyone with a recommendation can send you a private message here.
Also, email to ILADS at the address above, but know that there is no admission test for being an ILADS doc, so some of them are little ... odd. If you get one that doesn't feel right, collect copies of all tests done and find another doc. Treatment takes months, and you want a doc you have confidence in. It's a good habit to always get copies of ALL tests, including the ones you have had done already, because what is meaningless to a nonLLMD may speak volumes to an LLMD. A three-ring binder that stays in your possession is a good thing to have.
Whew. Let us know how we can help, and also how you do. If you are up for reading, there is a book called 'Cure Unknown' by Pamela Weintraub that explains much about the mess the 'mainstream' medical community has made regarding Lyme. The title is unfortunate, because it sounds like Lyme can't be cured (which it can and is!) ... but I think what she is getting at is that the 'cure' for docs who don't understand Lyme is still a mystery.
Short answer: Yes, it is possible to have Lyme after doxy treatment. The reason is that doxy works if taken almost immediately after infection with Lyme, but at a fairly early point after infection, the Lyme bacteria hide in the body (in cartilage and in shielded areas they create, called 'biofilms') that keep the antibiotics from reaching the bacteria. Other antibiotics are needed to breach the biofilms, but docs who aren't Lyme specialists don't know this. There is a huge split in the medical community on how to diagnose and treat Lyme, and you may be running smack into that. It's happened to many of us.
Docs who don't understand this are following what they believe is the right thing to do, and since there are plenty of well respected docs who believe doxy is enough, things are changing slowly in the medical field.
There are docs who think bigger thoughts and take more aggressive and appropriate action against Lyme (and will also test, based on your symptoms, for other infections the 'Lyme' ticks also carry about half the time). You'll see the term 'Lyme-literate MD' ('LLMD' for short), which is not a title or degree, but shorthand patients use to denote a doc who really understands Lyme.
The docs you have been seeing (apparently not LLMDs) are likely lined up with the IDSA, Infectious Disease Society of America, a voluntary group for docs who practice in the area of ... yes, infectious diseases. Because these docs are supposedly expert, all other docs tend to fall in line with IDSA approaches to diagnosis and treatment, which you were given.
There is another, separate voluntary group for LLMDs, called the International Lyme and Associated Diseases Society (ILADS). They have a website and a growing number of member docs. My Lyme doc is a member, and finding a doc who is a member of ILADS is a good place to start for a second opinion. If you email to
-- contact [at] ILADS [doc] org] --
and tell them where you are ("near [Tulsa OK]") and how far you can travel, they can send you names of docs who are ILADS members. There are some ILADS docs who are ... odd, so if you get one that doesn't seem like a good fit, go to another. Diagnosing and treating Lyme can take a while (my treatment was almost a year, some are longer, for good reasons I won't go into now), so it's a doc you want to be comfortable with and can get to for appointments (which were about once a month for me, once diagnosis was established).
If you like, you can also post here a new message so it catches the eye, saying generally where you are ('Need LLMD near [Dallas TX]'). Anyone here who has a recommendation can send you a private message through this website. We do NOT post the names of Lyme docs here in the open, because in some states, docs are at risk of losing their medical licenses for having the nerve to think for themselves when it comes to Lyme.
MRIs and CAT scans and the usual blood tests are not particularly useful for diagnosing Lyme, as you have learned the hard way. LLMDs sometimes use another scan called SPECT, which looks for areas of low blood flow in the brain due to swelling caused by the Lyme bacteria, but the basic tests are blood tests looking for Lyme bacteria in the blood and/or for the immune system's reaction to the presence of Lyme DNA.
The 'usual tests' (Western blot and ELISA) are probably what you had, and they are not especially accurate, because the Lyme bacteria have the ability to suppress the immune system, and the W.blot and ELISA tests rely on finding antibodies against Lyme in your blood. So a 'false negative' result on the 'usual' tests makes the tests useless, but nonLLMDs ignore that for reasons I don't understand, tho 'stubborn ignorance' is a phrase that comes to mind.)
My doc used Wblot and ELISA, as well as another test called PCR, short for polymerase chain reaction, which looks not for the immune system reaction to Lyme, but looks for actual DNA of the Lyme bacteria: direct evidence of an infection.
In your situation, I would post here asking for any leads to a good LLMD (start a new thread saying 'Need LLMD near [your city and state]' and anyone with a recommendation can send you a private message here.
Also, email to ILADS at the address above, but know that there is no admission test for being an ILADS doc, so some of them are little ... odd. If you get one that doesn't feel right, collect copies of all tests done and find another doc. Treatment takes months, and you want a doc you have confidence in. It's a good habit to always get copies of ALL tests, including the ones you have had done already, because what is meaningless to a nonLLMD may speak volumes to an LLMD. A three-ring binder that stays in your possession is a good thing to have.
Whew. Let us know how we can help, and also how you do. If you are up for reading, there is a book called 'Cure Unknown' by Pamela Weintraub that explains much about the mess the 'mainstream' medical community has made regarding Lyme. The title is unfortunate, because it sounds like Lyme can't be cured (which it can and is!) ... but I think what she is getting at is that the 'cure' for docs who don't understand Lyme is still a mystery.
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