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Muscle aches and fatigue?
So I have had a million symptoms for about 2.5 months now, and my western blot from Igenix came back positive last week. From what I've been reading, it seems like my symptoms were somewhat atypical from most.
For me, my worst symptoms by far are muscle aches in my calves and hands/forearms, shin/skeletal pain, and body/mind fatigue. I never had a fever or swollen anything.
Has anyone else experienced anything similar? I'm being treated with doxycycline, but i'm wondering if I might have a co-infection or something too.
For me, my worst symptoms by far are muscle aches in my calves and hands/forearms, shin/skeletal pain, and body/mind fatigue. I never had a fever or swollen anything.
Has anyone else experienced anything similar? I'm being treated with doxycycline, but i'm wondering if I might have a co-infection or something too.
Best Answer
Thanks for all the info! I will start taking the MG supplements and see if it helps. It's so hard for me to stop myself from worrying about these symptoms... Thursday night I went shopping and carried my black friday spoils for a couple hours, and today both my arms feel very sore. The kind of sore you would expect the day after a really intense workout. This is so frustrating. I can't wait to be done with this, it's been the worst hell i've ever been through. It's hard to accept there still might be a long road ahead.
Luckily, I happened to live close to an ILADS recommended doctor, and I've been seeing her for treatment. I'm going to talk to her about co-infections and meds when I see her again in a couple weeks.
I CANT WAIT to feel normal again, although it ***** seeing how slow my progress seems to be. I would say that I was hit pretty hard and fast by this disease, but after watching the "Under Our Skin" lyme documentary, I couldn't believe how much worse this can get. It's just awful.
Thanks again for all the info - I like to know as much as i can about what I'm dealing with, and I appreciate anything you can tell me.
Luckily, I happened to live close to an ILADS recommended doctor, and I've been seeing her for treatment. I'm going to talk to her about co-infections and meds when I see her again in a couple weeks.
I CANT WAIT to feel normal again, although it ***** seeing how slow my progress seems to be. I would say that I was hit pretty hard and fast by this disease, but after watching the "Under Our Skin" lyme documentary, I couldn't believe how much worse this can get. It's just awful.
Thanks again for all the info - I like to know as much as i can about what I'm dealing with, and I appreciate anything you can tell me.
oops, and another PS:
since your current doc tested you through IGeneX, that is a very good sign that the doc is clued in about Lyme, so you might not need a different doc.
Most of the clueless docs don't use IGeneX, so maybe have a conversation with the current doc about whether co-infections were tested etc. and what plans the doc has for meds for the co-infections, if you have any. Then decide whether to stay or go, based on the response.
since your current doc tested you through IGeneX, that is a very good sign that the doc is clued in about Lyme, so you might not need a different doc.
Most of the clueless docs don't use IGeneX, so maybe have a conversation with the current doc about whether co-infections were tested etc. and what plans the doc has for meds for the co-infections, if you have any. Then decide whether to stay or go, based on the response.
... and PS:
if your doc says no more tests and only take doxy, I would find a new doc. You don't have to tell the current doc you are going doc-shopping, but I would do so.
The old-fashioned view of Lyme is that it is always killed off by a couple weeks of doxy, but that works ONLY if you get treated almost immediately after getting bitten, and many people (incl. me) don't know when we were bitten -- and if you do see a tick stuck you, it doesn't mean you were not bitten last year or a few months ago by another that you *didn't* see.
If my doc were the old fashioned kind who thinks only of Lyme (not co-infections) and only of doxy, I would find another doc. It's a real split in the medical community, and many well-meaning docs are on the wrong side of history in this battle.
If you need help finding a good Lyme doc, you can:
---------------------------------------------------------------------------------------
1 -- post a message here saying 'need LLMD near Portland OR', and someone may send you a private message ('PM') back through this system. State and local medical boards may not approve of more aggressive Lyme treatment like I had, and the docs who are willing to BE aggressive for the patients' sake can get in trouble with the med boards -- so the docs try to stay under the radar.
That is why we do NOT post LLMD's names in the open here, to protect the docs and to preserve for ourselves the ability to find an LLMD.
If someone sends you a 'PM', there will be a little (1) next to 'My MedHelp' in the blue bar at top of this page. Click there and it will take you your private mailbox on this system.
---------------------------------------------------------------------------------------
2 -- search/google online for something like
LLMD Oregon
or LLMD Portland OR
or wherever you can get to. That will sometimes pop up local patient groups with good leads.
---------------------------------------------------------------------------------------
3 -- email to
contact [at] ILADS [dot] org
and tell them where you live and how far you can travel, like "Need LLMD within 50 miles of Portland Oregon" and they will send you back the name(s) of doc(s) that fit your request, if they have any. If they don't, try expanding the search area and submit another request.
---------------------------------------------------------------------------------------
4 -- search online for something like
Oregon Lyme (or 'Oregon Lyme disease')
and you might be surprised what you find. Patient groups familiar with the area are great resources, but if the first doc is a dud, see another. Lyme doesn't just go away by itself, but the hassle to get well is SO worth it.
---------------------------------------------------------------------------------------
Sorry for the data dump, don't get overwhelmed by it. If you have really bad brain fog, ask a friend to help with the search for a doc.
Take care, keep us posted, let us know how we can help. Best wishes to you --
if your doc says no more tests and only take doxy, I would find a new doc. You don't have to tell the current doc you are going doc-shopping, but I would do so.
The old-fashioned view of Lyme is that it is always killed off by a couple weeks of doxy, but that works ONLY if you get treated almost immediately after getting bitten, and many people (incl. me) don't know when we were bitten -- and if you do see a tick stuck you, it doesn't mean you were not bitten last year or a few months ago by another that you *didn't* see.
If my doc were the old fashioned kind who thinks only of Lyme (not co-infections) and only of doxy, I would find another doc. It's a real split in the medical community, and many well-meaning docs are on the wrong side of history in this battle.
If you need help finding a good Lyme doc, you can:
---------------------------------------------------------------------------------------
1 -- post a message here saying 'need LLMD near Portland OR', and someone may send you a private message ('PM') back through this system. State and local medical boards may not approve of more aggressive Lyme treatment like I had, and the docs who are willing to BE aggressive for the patients' sake can get in trouble with the med boards -- so the docs try to stay under the radar.
That is why we do NOT post LLMD's names in the open here, to protect the docs and to preserve for ourselves the ability to find an LLMD.
If someone sends you a 'PM', there will be a little (1) next to 'My MedHelp' in the blue bar at top of this page. Click there and it will take you your private mailbox on this system.
---------------------------------------------------------------------------------------
2 -- search/google online for something like
LLMD Oregon
or LLMD Portland OR
or wherever you can get to. That will sometimes pop up local patient groups with good leads.
---------------------------------------------------------------------------------------
3 -- email to
contact [at] ILADS [dot] org
and tell them where you live and how far you can travel, like "Need LLMD within 50 miles of Portland Oregon" and they will send you back the name(s) of doc(s) that fit your request, if they have any. If they don't, try expanding the search area and submit another request.
---------------------------------------------------------------------------------------
4 -- search online for something like
Oregon Lyme (or 'Oregon Lyme disease')
and you might be surprised what you find. Patient groups familiar with the area are great resources, but if the first doc is a dud, see another. Lyme doesn't just go away by itself, but the hassle to get well is SO worth it.
---------------------------------------------------------------------------------------
Sorry for the data dump, don't get overwhelmed by it. If you have really bad brain fog, ask a friend to help with the search for a doc.
Take care, keep us posted, let us know how we can help. Best wishes to you --
Yes, for me my co-infections are much worse then the Lyme itself. Yes, ask her about the co's so she can give you different meds. Wish you look.
[continued from previous message]
You say: "It's hard to believe this can all be caused by lyme disease... the only real exposure i've had to ticks this year was hiking in eastern Washington and Portland Oregon. And everyone says lyme is not too common around here. I must have been outrageously unlucky."
Ticks can't read maps and don't know where they are, but they are happy to feast on stray humans walking by. The more out-of-touch levels of the medical community -- that is, the ones who sit in Atlanta in the Centers for Disease Control (CDC)-- have it as an article of faith that Lyme is rare, hard to get and easy to cure. They are wrong. Every epidemic in history started in a small area and spread.
It's a lot like the early reaction to AIDS years ago: the CDC doc in charge got on a TV news conference and flatly stated that you could not get AIDS unless you were gay or Haitian. At that time, it was the data the medical profession had to work with, but they foolishly assumed they had a complete data set already. They were so wrong, but docs operate on constructs of current knowledge, and the CDC position on Lyme is STILL that is is "hard to get and easy to cure". So wrong.
You say: "It's just hard to believe this is what i really have sometimes..."
Yeah, I was pretty surprised too when I got diagnosed. 'Outdoorsy' for me had meant rolling the trash cans down to the curb once a week, but I likely got Lyme touring college campuses with my kid. Never saw a tick, never had a rash. But I had Lyme and babesia. It's everywhere.
You say: "I've been supplementing with Mg Citrate on and off for a couple months.. I haven't really noticed a difference, but I might not be taking it regularly enough."
Mg won't cure Lyme, but it may help the muscle cramps/aches at some level. I took (and still take) 400 mg of Mg twice a day. It won't cure what ails you, but it can help with the muscle aches and also helps sleep. Try taking a full dose regularly for at least several (3-4) weeks and see what happens. The American diet is often deficient in Mg to start with, and if you get a bunch of bacteria slurping up the Mg you do get, then you can easily become deficient.
You ask: "Could there be any other reason for the muscle aches?"
Sure, it could be too much exercise, or some other illness. But if you're not exercising too much, then try dosing Mg regularly for at least [3 or 4] weeks (I'm guessing) and see if it helps. It won't hurt, unless you get diarrhea, and then reduce the dose slightly. I'm very sensitive to EVERYthing, and I never had problems with Mg supps, only got better sleep and less muscle aches/pains. Try the obvious solution and see if it works before discarding it.
You ask: "Does lyme physically damage muscles? My muscles feel vaguely crampy and achey... but they don't ever cramp or get tight."
That's how my Mg deficiency felt, and it also made my brain fog worse. It doesn't damage the muscles, to my knowledge, but just makes it harder for them to function smoothly. Increase and maintain a higher dosage and see what happens after at least a couple of weeks. It can't hurt, and might well help. If you get diarrhea, I've read it's too much, so back off on the dose a bit. And be sure to tell your doc you are taking Mg and how much so it can be factored in.
You say: "I know something is going on down there, especially since all my bones pop and crack constantly. It doesn't hurt, but its kind of freaking me out. Is all this due to lyme toxicity or something?"
Lyme bacteria like to hide in cartilage, where there is low blood flow, and the bacteria are harder for the immune system to find when they are hidden that way. It's not toxicity, it's just Lyme.
---------------------------------------------------------
Whew! Hope that helps. Let us know how you do and if you any other questions -- take care! We've all been where you are, one way or another.
[end]
You say: "It's hard to believe this can all be caused by lyme disease... the only real exposure i've had to ticks this year was hiking in eastern Washington and Portland Oregon. And everyone says lyme is not too common around here. I must have been outrageously unlucky."
Ticks can't read maps and don't know where they are, but they are happy to feast on stray humans walking by. The more out-of-touch levels of the medical community -- that is, the ones who sit in Atlanta in the Centers for Disease Control (CDC)-- have it as an article of faith that Lyme is rare, hard to get and easy to cure. They are wrong. Every epidemic in history started in a small area and spread.
It's a lot like the early reaction to AIDS years ago: the CDC doc in charge got on a TV news conference and flatly stated that you could not get AIDS unless you were gay or Haitian. At that time, it was the data the medical profession had to work with, but they foolishly assumed they had a complete data set already. They were so wrong, but docs operate on constructs of current knowledge, and the CDC position on Lyme is STILL that is is "hard to get and easy to cure". So wrong.
You say: "It's just hard to believe this is what i really have sometimes..."
Yeah, I was pretty surprised too when I got diagnosed. 'Outdoorsy' for me had meant rolling the trash cans down to the curb once a week, but I likely got Lyme touring college campuses with my kid. Never saw a tick, never had a rash. But I had Lyme and babesia. It's everywhere.
You say: "I've been supplementing with Mg Citrate on and off for a couple months.. I haven't really noticed a difference, but I might not be taking it regularly enough."
Mg won't cure Lyme, but it may help the muscle cramps/aches at some level. I took (and still take) 400 mg of Mg twice a day. It won't cure what ails you, but it can help with the muscle aches and also helps sleep. Try taking a full dose regularly for at least several (3-4) weeks and see what happens. The American diet is often deficient in Mg to start with, and if you get a bunch of bacteria slurping up the Mg you do get, then you can easily become deficient.
You ask: "Could there be any other reason for the muscle aches?"
Sure, it could be too much exercise, or some other illness. But if you're not exercising too much, then try dosing Mg regularly for at least [3 or 4] weeks (I'm guessing) and see if it helps. It won't hurt, unless you get diarrhea, and then reduce the dose slightly. I'm very sensitive to EVERYthing, and I never had problems with Mg supps, only got better sleep and less muscle aches/pains. Try the obvious solution and see if it works before discarding it.
You ask: "Does lyme physically damage muscles? My muscles feel vaguely crampy and achey... but they don't ever cramp or get tight."
That's how my Mg deficiency felt, and it also made my brain fog worse. It doesn't damage the muscles, to my knowledge, but just makes it harder for them to function smoothly. Increase and maintain a higher dosage and see what happens after at least a couple of weeks. It can't hurt, and might well help. If you get diarrhea, I've read it's too much, so back off on the dose a bit. And be sure to tell your doc you are taking Mg and how much so it can be factored in.
You say: "I know something is going on down there, especially since all my bones pop and crack constantly. It doesn't hurt, but its kind of freaking me out. Is all this due to lyme toxicity or something?"
Lyme bacteria like to hide in cartilage, where there is low blood flow, and the bacteria are harder for the immune system to find when they are hidden that way. It's not toxicity, it's just Lyme.
---------------------------------------------------------
Whew! Hope that helps. Let us know how you do and if you any other questions -- take care! We've all been where you are, one way or another.
[end]
Have you asked your doc about the muscle cramps etc.? That and the fatigue are common in Lyme ... I had pretty bad 'fog brain' too, but some people get symptoms worse in the body than in thinking process.
It can take a while for the doc to get all the co-infections identified, so you may find (as you report these symptoms to your doc) that other meds are added and/or add'l tests are done.
Since my brain was so foggy when I was sick, I kept a daily symptom log on my computer and printed it out and took it to my doc to read at the next appointment -- because my memory wasn't good enough to look back and give a good history since the last appointment. My doc loved it. And it certainly beat hearing me say, "Gee, I don't remember."
I had columns for
-------------------------------------------
--date
--how I feel -- including specific symptoms (like headache, muscle aches, sore soles of feet, popping joints, whatever)
--how I slept and a short list of what I ate
--what prescription meds and nonprescription [vitamins, supps] meds I took, and how much of each.
-----------------------------------------
Sometimes it takes a while for all the co-infections to show their evil faces, because they can hide behind the other infections and not show up on tests, so keep reporting to your doc any changes (good or bad) so the doc can take it into account. Lyme and its coinfections are often not single-stop diagnoses.
You say: "From what I've been reading, it seems like my symptoms were somewhat atypical from most."
That's common, to be atypical -- if that makes sense. We are all a bit or a lot different from each other, partly depending on the strain of Lyme, which co-infections, and your immune system function. The only thing constant about Lyme is how inconsistent it is in so many of us.
You also say: "For me, my worst symptoms by far are muscle aches in my calves and hands/forearms, shin/skeletal pain, and body/mind fatigue. I never had a fever or swollen anything."
I was like you. I described my symptoms as feeling like a cross between the flu and a hangover. Magnesium supplements can help, but it won't cure the Lyme.
You also say: "I'm being treated with doxycycline, but i'm wondering if I might have a co-infection or something too.'
Did your LLMD test for anything other than Lyme? If not, I would ask politely, 'Is it possible I also have other infections from the tick?' and see what the doc says. I've read that about half the 'Lyme' ticks also carry co-infections, so the odds are 50/50 that you do have something else lurking.
You say: "I'm seeing an LLMD, and she started me on doxy last week. I've been feeling worse every since I started antibiotics, but I can't really tell if i'm herxing.. it's mostly been gradually getting worse. I think I'll talk to me doctor about co-infections next time I see her."
Feeling worse can indeed be due to the dying bacteria releasing their toxins into your body as the bacteria are killed by the antibiotics (which is the definition of 'Herxing.')
But DO report how you feel to the doc at the next appointment. (And think about that symptom log I suggested. There is so much to forget that may be significant to the doc.)
And an important side note: doxycycline works against Lyme ONLY very early in the infection -- if you have been infected longer than a few weeks before treatment began, the Lyme bacteria may have retreated into areas in the body called biofilms, which are slimy shields the bacteria hide in and the immune system and doxy cannot reach.
Doxy is often the first line of treatment in Lyme, but if you are past a very early point in the infection and/or have co-infections, then doxy will in all likelihood NOT be enough. I had had Lyme for months and months before diagnosis, and I also had babesiosis ... I was NEVER prescribed doxy, but was instead treated first for babesia with two other antibiotics, then when babs was gone, I was treated with two other antibiotics (not doxy) against Lyme.
--->>> If your doc always treats with just doxy, then I would find another Lyme doc for a second opinion. <<<--- You don't have to tell the doc you are getting another opinion, but it's a reason to get copies of ALL your tests, so you have your own little file to take to a doc for a second opinion without ticking your current doc off, if you decide to get a second opinion. pure self-protection. Even well-meaning docs (Lyme and otherwise) have blind spots and make mistakes. Be in charge.
[see part two of this message below]
It can take a while for the doc to get all the co-infections identified, so you may find (as you report these symptoms to your doc) that other meds are added and/or add'l tests are done.
Since my brain was so foggy when I was sick, I kept a daily symptom log on my computer and printed it out and took it to my doc to read at the next appointment -- because my memory wasn't good enough to look back and give a good history since the last appointment. My doc loved it. And it certainly beat hearing me say, "Gee, I don't remember."
I had columns for
-------------------------------------------
--date
--how I feel -- including specific symptoms (like headache, muscle aches, sore soles of feet, popping joints, whatever)
--how I slept and a short list of what I ate
--what prescription meds and nonprescription [vitamins, supps] meds I took, and how much of each.
-----------------------------------------
Sometimes it takes a while for all the co-infections to show their evil faces, because they can hide behind the other infections and not show up on tests, so keep reporting to your doc any changes (good or bad) so the doc can take it into account. Lyme and its coinfections are often not single-stop diagnoses.
You say: "From what I've been reading, it seems like my symptoms were somewhat atypical from most."
That's common, to be atypical -- if that makes sense. We are all a bit or a lot different from each other, partly depending on the strain of Lyme, which co-infections, and your immune system function. The only thing constant about Lyme is how inconsistent it is in so many of us.
You also say: "For me, my worst symptoms by far are muscle aches in my calves and hands/forearms, shin/skeletal pain, and body/mind fatigue. I never had a fever or swollen anything."
I was like you. I described my symptoms as feeling like a cross between the flu and a hangover. Magnesium supplements can help, but it won't cure the Lyme.
You also say: "I'm being treated with doxycycline, but i'm wondering if I might have a co-infection or something too.'
Did your LLMD test for anything other than Lyme? If not, I would ask politely, 'Is it possible I also have other infections from the tick?' and see what the doc says. I've read that about half the 'Lyme' ticks also carry co-infections, so the odds are 50/50 that you do have something else lurking.
You say: "I'm seeing an LLMD, and she started me on doxy last week. I've been feeling worse every since I started antibiotics, but I can't really tell if i'm herxing.. it's mostly been gradually getting worse. I think I'll talk to me doctor about co-infections next time I see her."
Feeling worse can indeed be due to the dying bacteria releasing their toxins into your body as the bacteria are killed by the antibiotics (which is the definition of 'Herxing.')
But DO report how you feel to the doc at the next appointment. (And think about that symptom log I suggested. There is so much to forget that may be significant to the doc.)
And an important side note: doxycycline works against Lyme ONLY very early in the infection -- if you have been infected longer than a few weeks before treatment began, the Lyme bacteria may have retreated into areas in the body called biofilms, which are slimy shields the bacteria hide in and the immune system and doxy cannot reach.
Doxy is often the first line of treatment in Lyme, but if you are past a very early point in the infection and/or have co-infections, then doxy will in all likelihood NOT be enough. I had had Lyme for months and months before diagnosis, and I also had babesiosis ... I was NEVER prescribed doxy, but was instead treated first for babesia with two other antibiotics, then when babs was gone, I was treated with two other antibiotics (not doxy) against Lyme.
--->>> If your doc always treats with just doxy, then I would find another Lyme doc for a second opinion. <<<--- You don't have to tell the doc you are getting another opinion, but it's a reason to get copies of ALL your tests, so you have your own little file to take to a doc for a second opinion without ticking your current doc off, if you decide to get a second opinion. pure self-protection. Even well-meaning docs (Lyme and otherwise) have blind spots and make mistakes. Be in charge.
[see part two of this message below]
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Then after being in a lot of grassy, woodsy places on vacation, I was suddenly worse -- similar symptoms as before, but more and bigger. I dragged myself through 20 (count 'em: 20) MDs until one tested me for Lyme, since everything else had been covered by the 19 preceding docs ... and got a positive test!! But the doc blew it off and said I wasn't sick enough to have Lyme. Yeah, right.
Then I went to an LLMD and got further tests, and the new doc said it was likely that my immune system was pretty strong and kept me in mild misery instead of huge misery for a long time, till I got bitten again more recently. So, no, I don't think your idea is crazy at all.
Your doc sounds on the ball, which is great! Doxy is the usual first stop for a *recent* Lyme infection, but as mentioned above, you don't always know when you got infected -- and that sounds like it might apply to you too. Once Lyme gets settled in, it needs different meds to evict the little beggars, so if your doc is inclined to keep you on doxy, I'd raise the issue with her about other meds if it looks like you have a longer infection than very recent.
When Lyme bacteria settle in and make themselves at home for a while, they create slimy shields called 'biofilms' that keep the immune system (and doxy) from locating the bacteria for the kill. Other meds are needed to pierce the biofilm so the bacteria can be killed.
Also, your doc is probably checking for possible co-infections of other diseases the Lyme ticks often bring ... if the doc doesn't, I would ask why. She may say that you don't have the symptoms of anything but Lyme, which is a reasonable answer, but be sure you have given the doc a full download of ALL your symptoms, because they blend together and it's hard to parse what infections you might have.
Sometimes it happens that the co-infections are hidden by the activities of the Lyme bacteria and the interplay among the bacteria and your immune system, and it can take a while to sort it all out. The important thing is knowing that your doc will keep an eye out for that possibility as your treatment progresses.
A diagnosis is the first step to getting well -- good for you! Keep us posted, and be sure to update your doc with new or changing symptoms as treatment progresses.