Aa
Somewhat new to this. Didn't know if symptoms came back?
After making my list of what to discuss with my Doctor for the yearly routine check-up and going down that list with her I ended up getting tested and it being positive for Lyme back in November. I just thought I was not aging gracefully, getting too old for my very physically active job, or having issues with my on going PTSD. They called me up a week later and informed me of the Lyme and sent me my 21 days of antibiotics. I asked the pharmacy for information on Lyme disease and they told me to look it up on the internet. I have found too much information! So I stopped looking. While taking the antibiotics it seemed I felt worse and had called the doctor. I didn't know if I had the flu or if it was common with the medication? They told me to take the medicine with food. Eventually I finished the meds and did start feeling better. I didn't even know how bad I felt until I felt better. This all seemed over by New Years but a few weeks ago I noticed I was starting to get (and stay) tired, my joints were starting to get sore again, my running out of air easier was coming back, and just that overwhelmed feeling in my thoughts started. I had the school vacation week off and some of that eased up a bit. Now this past week, my joints are screaming sore (I can't even do a squat) and this morning I couldn't get out of bed but for a few minutes here and there, I couldn't even lift my daughter up and I slept almost the entire day (this is very uncommon for me). So, do I have a flu or does Lyme disease come back and if so this fast?
I also just want to thank everyone I read on this (blog?). I have not been able to find much helpful information and when I found this page tonight and read it for a while, it made me feel not so lonely.
Peace,
Tori
I also just want to thank everyone I read on this (blog?). I have not been able to find much helpful information and when I found this page tonight and read it for a while, it made me feel not so lonely.
Peace,
Tori
We're glad to help with whatever we can. No one here is medically trained that I know of, but we've all dealt with the politics of Lyme one way or another. I've found it very useful to be able to come here and bounce things off people to see what ideas and approaches there are. Lyme is a still obscure and changing field of medicine and study, so we just gotta roll with the punches. The best revenge is living well, and that's what we aim for. :)
Keep us posted -- best wishes --
Keep us posted -- best wishes --
Thank you so much!! I did some research following the advise given here from all you kind folks. I have made some calls and have gotten a few run-arounds but that is o.k.. I feel more supported since finding this page and some what more knowledgeable too. The hardest part was just not knowing anything. I did find the web page and found it helpful. It's funny how difficult it can be to find information about Lyme on the internet but then someone points you in the right direction ....
Thank you again. Best wishes to all!
Peace
Thank you again. Best wishes to all!
Peace
and PS, I may have missed this in the message chain above, but fyi:
"LLMD" (Lyme-literate MD) is not an official title or degree or membership ... it's just patient slang for docs (of any specialty or none) who think bigger thoughts about Lyme than most docs. An LLMD can have any kind of background ... mine was (is) an immunologist by training; some are internists or GPs, etc. It's a frame of mind, one which understands that the current standards by which Lyme is diagnosed (or not, as you discovered) are out of date. Sadly, few LLMDs are infectious disease (ID) docs, because the rules by which ID docs are held by their national group (IDSA, or Infectious Disease Society of America) keep the docs from straying from the standard IDSA approach to Lyme: it's a simple infection easy to get rid of with a few weeks of antibiotics, and little or no attention is given by them to other diseases the Lyme ticks carry about half the time ('co-infections').
So if you ask a doc if s/he is an LLMD, they will almost certainly say no. (And if they don't say no, then I would be suspicious of them.) There are quacks out there, some who call themselves LLMDs, so you have to keep your guard up until you are comfortable with the approach the doc you see is taking. Some of them want you to buy a boatload of vitamins only from them and other money-making approaches; some of them are 80% LLMD-style, but the other 20% is a bit fringe for my taste.
Because Lyme is still much of a mystery to the medical profession, it's hard to tell the quacks from the sincere and serious docs .... but there is no way around it. If you get a bad feeling about the doc, there may be a reason to change docs, as much of a hassle as that can be.
You will notice that we almost never post the names of MDs here in this website, whether for recommendations or complaints or anything else. The reason is, as said above, that many LLMDs 'fly under the radar' and do NOT want the publicity, because of possible investigation by state or local medical boards for 'over treating' Lyme beyond a few weeks of antibiotics. You'll sometimes see references to 'Dr X', and anyone who has been around Lyme for very long often knows who that is referring to .... but that's about as far as it goes, because we also don't want to give ammunition to the medical boards to take away a doc's license for treating Lyme and its coinfections aggressively (meaning more than a couple weeks of antibiotics.)
There was a very well known and well regarded LLMD back East who got his medical license revoked, not for anything he did that harmed someone, as far as I know, but because he was public about how he diagnosed and treated Lyme: aggressively, and for more than a few weeks. That's what we want to protect our docs from.
So who protects us from the bad docs (and there are some)? Message boards like this one. You'll see messages sometimes asking for anyone who has seen "Dr [M] in the [Atlanta] area" and please send a private message through this website ... then people take the conversation offline to avoid giving out detailed information about ourselves or our docs.
All very cloak-and-dagger, I know, but it's not as bad as having Lyme!
Don't mean to scare you off ... a good Lyme doc is literally worth his weight in gold and is well worth finding. Let us know how we can help.
"LLMD" (Lyme-literate MD) is not an official title or degree or membership ... it's just patient slang for docs (of any specialty or none) who think bigger thoughts about Lyme than most docs. An LLMD can have any kind of background ... mine was (is) an immunologist by training; some are internists or GPs, etc. It's a frame of mind, one which understands that the current standards by which Lyme is diagnosed (or not, as you discovered) are out of date. Sadly, few LLMDs are infectious disease (ID) docs, because the rules by which ID docs are held by their national group (IDSA, or Infectious Disease Society of America) keep the docs from straying from the standard IDSA approach to Lyme: it's a simple infection easy to get rid of with a few weeks of antibiotics, and little or no attention is given by them to other diseases the Lyme ticks carry about half the time ('co-infections').
So if you ask a doc if s/he is an LLMD, they will almost certainly say no. (And if they don't say no, then I would be suspicious of them.) There are quacks out there, some who call themselves LLMDs, so you have to keep your guard up until you are comfortable with the approach the doc you see is taking. Some of them want you to buy a boatload of vitamins only from them and other money-making approaches; some of them are 80% LLMD-style, but the other 20% is a bit fringe for my taste.
Because Lyme is still much of a mystery to the medical profession, it's hard to tell the quacks from the sincere and serious docs .... but there is no way around it. If you get a bad feeling about the doc, there may be a reason to change docs, as much of a hassle as that can be.
You will notice that we almost never post the names of MDs here in this website, whether for recommendations or complaints or anything else. The reason is, as said above, that many LLMDs 'fly under the radar' and do NOT want the publicity, because of possible investigation by state or local medical boards for 'over treating' Lyme beyond a few weeks of antibiotics. You'll sometimes see references to 'Dr X', and anyone who has been around Lyme for very long often knows who that is referring to .... but that's about as far as it goes, because we also don't want to give ammunition to the medical boards to take away a doc's license for treating Lyme and its coinfections aggressively (meaning more than a couple weeks of antibiotics.)
There was a very well known and well regarded LLMD back East who got his medical license revoked, not for anything he did that harmed someone, as far as I know, but because he was public about how he diagnosed and treated Lyme: aggressively, and for more than a few weeks. That's what we want to protect our docs from.
So who protects us from the bad docs (and there are some)? Message boards like this one. You'll see messages sometimes asking for anyone who has seen "Dr [M] in the [Atlanta] area" and please send a private message through this website ... then people take the conversation offline to avoid giving out detailed information about ourselves or our docs.
All very cloak-and-dagger, I know, but it's not as bad as having Lyme!
Don't mean to scare you off ... a good Lyme doc is literally worth his weight in gold and is well worth finding. Let us know how we can help.
I think the email address you can send to (to request the name of a local LLMD) is
contact [at] ILADS [ org]
It's a valuable and interesting website generally, but it rambles a bit, so don't be overwhelmed by it.
contact [at] ILADS [ org]
It's a valuable and interesting website generally, but it rambles a bit, so don't be overwhelmed by it.
You are welcome.
I was born in Western MA and know from a friend of mine whose husband got Lyme that the are LLMD's in Boston. ILADS should have the names.
Good luck!
I was born in Western MA and know from a friend of mine whose husband got Lyme that the are LLMD's in Boston. ILADS should have the names.
Good luck!
I am so sorry you have to go through this while trying to raise your children and work. The above answers are correct you need more antibiotics. I was diagnosed in 2005 but had it since at least 1996. On antibiotics you will feel worse before you get better. This is due to the die-off of the spirochetes. There is much controversy on Lyme Disease and its treatments. Unfortunately there is no easy answer for everyone. What works for you may not work for me. It is a complicated disease for sure. I tried all the medical routes available, oral doxycycline, for many months, IV for 4 months before suffering a stroke, I finally went to an herbalist and after 9 months reached remission. I am not saying stroke will happen to you and I certainly don't want you to be afraid of it, but, for me it just didnt work. My email is ***@****, on facebook you can find me as Bambi Albert. There are many groups formed in facebook for lyme disease. If you are a member please look me up.
Thank you for your reply! I am going to write down what you said and call my doctor today. Thank you as well Mojogal. I have been given no information from the Doctor and I had mentioned to a family member that I thought the Lyme was coming back, they said that they researched it on the internet and that it doesn't come back. This information now appears incorrect. I'm glad you explained what a LLMD was. I've been told there is a Lyme Disease Doctor in Boston (but I'm not sure if it meant infectious disease Doctor or not). I will start doing more research. I live in Massachusetts, about an hour/hour and a half from Boston. My insurance is pretty good. The biggest issue I'm struggling with right now (today) is feeling so weak that I took the day off from work. I never take time off of work for myself. I did miss two days before the Christmas break because of this (or the flu, I couldn't tell as I was on the antibiotics at the time). I try and save my sick time for my two kids that are still in elementary school. I love my job and don't want to think this is going to interfere. My job is very high energy and my two kids are very high energy. I need high energy! The second issue that might come up is the out of pocket expenses. I barely have pockets to begin with ~ LOL. I apologize for maybe sounding like a baby but this is pretty new to me and I want so bad to have a positive outlook. The impression I was given was take the medicine and life will go back to normal.
Thank you again Ricobord and mojogal for your information. You have given me great direction as well as knowledge to arm myself with. Knowledge is the strongest tool to work with. I hope you both are feeling well.
Peace.
Thank you again Ricobord and mojogal for your information. You have given me great direction as well as knowledge to arm myself with. Knowledge is the strongest tool to work with. I hope you both are feeling well.
Peace.
Thank you for your reply! Yes I have found the people on this board so knowledgeable. You wrote that it starts with your knees and then goes to wrists and fingers ~ That is exactly the order here, then the bottom of my feet, my hips, and my neck (except I'm not sure if the hips and neck are from the extra laying down time my body is not use to).
Good luck with your piano playing.
Peace
Good luck with your piano playing.
Peace
I agree with Rico. You need months or more of antibiotics but I want to mention not to be alarmed if you feel worse before you feel better.
You maybe herxing (google herxheimer reaction) to your medication which means you are having a die off of the critters which generally makes you feel worse for a while.
You do need to find an LLMD who will treat you longer with antibiotics. Many of us have chronic Lyme, I was bit over 20 years and it took me that long to get diagnosed, and the longer you wait for treatment the worse you will get.
Let us know if you need more help.
You maybe herxing (google herxheimer reaction) to your medication which means you are having a die off of the critters which generally makes you feel worse for a while.
You do need to find an LLMD who will treat you longer with antibiotics. Many of us have chronic Lyme, I was bit over 20 years and it took me that long to get diagnosed, and the longer you wait for treatment the worse you will get.
Let us know if you need more help.
I am crashing right now, but I wanted to give you a quick reply before I head for bed.
What you are experiencing is most likely the all too common failure of the IDSA's treatment protocol of 21 days of antibiotics for Lyme. It is very controversial and many thousands of people insist that the treatment failed them, but doctors are too fixated on their protocols and listening to the "experts" (the ivory tower researchers who don't treat many patients) to actually treat the patient in front of them.
You need more antibiotics for months, not weeks, and you'll need to find a LLMD (Lyme Literate Medical Doctor) to get it. They are not infectious disease doctors, who are sadly the worst about Lyme. LLMDs are brave doctors who are willing to treat the patient, not the description in a textbook, and will treat you until you are well. It is important to do this as soon as possible. Insufficient treatment makes the infection harder to cure later.
If you have to pay out of pocket to see the LLMD, then do what you have to do to get your health back. Chronic Lyme will ruin it and the longer the bus have to get entrenched, the harder it is to get at them. A LLMD will also know to look for coinfections, other diseases hat come along with Lyme and complicate things, sometimes interfering with treatment for Lyme. Most doctors are sadly oblivious to this, so the right doctor makes all the difference.
You can check local Lyme support groups, your state Lyme Disease association, and ILADS.org for more info and referrals to treating doctors. Do your research as not all docs who claim to be a LLMD knows what they're doing. You can always google Lyme and your state/area to see what you find. While some LLMDs are publicly known, others fly under the radar so they don't get harrassed by other doctors who think the treatment protocols are absolute truth, never to be violated. B ause of this, we don't post their names on forums like this. But if you tell us where you are, others familiar with your area might be able to give you suggestions.
Keep us posted!
What you are experiencing is most likely the all too common failure of the IDSA's treatment protocol of 21 days of antibiotics for Lyme. It is very controversial and many thousands of people insist that the treatment failed them, but doctors are too fixated on their protocols and listening to the "experts" (the ivory tower researchers who don't treat many patients) to actually treat the patient in front of them.
You need more antibiotics for months, not weeks, and you'll need to find a LLMD (Lyme Literate Medical Doctor) to get it. They are not infectious disease doctors, who are sadly the worst about Lyme. LLMDs are brave doctors who are willing to treat the patient, not the description in a textbook, and will treat you until you are well. It is important to do this as soon as possible. Insufficient treatment makes the infection harder to cure later.
If you have to pay out of pocket to see the LLMD, then do what you have to do to get your health back. Chronic Lyme will ruin it and the longer the bus have to get entrenched, the harder it is to get at them. A LLMD will also know to look for coinfections, other diseases hat come along with Lyme and complicate things, sometimes interfering with treatment for Lyme. Most doctors are sadly oblivious to this, so the right doctor makes all the difference.
You can check local Lyme support groups, your state Lyme Disease association, and ILADS.org for more info and referrals to treating doctors. Do your research as not all docs who claim to be a LLMD knows what they're doing. You can always google Lyme and your state/area to see what you find. While some LLMDs are publicly known, others fly under the radar so they don't get harrassed by other doctors who think the treatment protocols are absolute truth, never to be violated. B ause of this, we don't post their names on forums like this. But if you tell us where you are, others familiar with your area might be able to give you suggestions.
Keep us posted!
Welcome Tori! I'm glad you found this board. I'm too new at Lymes to give you any advice, but there are many people who are willing to share their vast knowledge of this awful disease.
My joints are the most noticeable of my Lymes. Started with my knees and is now in my wrists and fingers. As a pianist, I am finding this more than frustrating LOL. It is also how I support myself. I'm on 3 antibiotics and working with a Lyme Literate MD. I have nothing but certainty that this will get better. I find it surprising how quickly I can go from pretty good to in awful pain and back again.
Just know that you aren't alone, and you'll find some very helpful advice as well as fantastic support on this board. I know I have and I am grateful for all of it.
My joints are the most noticeable of my Lymes. Started with my knees and is now in my wrists and fingers. As a pianist, I am finding this more than frustrating LOL. It is also how I support myself. I'm on 3 antibiotics and working with a Lyme Literate MD. I have nothing but certainty that this will get better. I find it surprising how quickly I can go from pretty good to in awful pain and back again.
Just know that you aren't alone, and you'll find some very helpful advice as well as fantastic support on this board. I know I have and I am grateful for all of it.
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