Aa
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
awright, just one more thing I meant to say: Lyme loves to live in cartilage, because of the low blood flow that keeps the immune system from homing in the Lyme bacteria. So aches in the joints and muscles are not uncommon, whether from low magnesium or bacteria in the cartilage. If it's Lyme, the symptoms will stop after treatment.
One more thing: You say above:
"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. It's just hard to believe this is what i really have sometimes..."
The official mantra of many MDs and public health officials is: 'we don't have Lyme disease here.' Balderdash! ticks can't read maps and don't know they aren't supposed to be in Oregon. If there are trees and greenery and furry little animals (including your cat), then there are ticks. Lyme ticks are everywhere.
That turn-a-blind-eye approach to Lyme is right in line with the medical profession stating very very very seriously when AIDS first was recognized that you could only get AIDS if you were (1) gay or (2) Haitian -- because the early infections were in (1) gays and (2) Haitians. Docs, for being really well educated, are sometimes very dumb.
If you have Lyme, you have about a 50/50 chance of having one or more other infections the Lyme ticks carry, and that needs separate diagnosis and treatment. So please do think about getting another opinion -- Lyme is in the same family as syphilis, and that always gets treated because it doesn't go away by itself ... and neither does Lyme.
Don't freak out, just find a Lyme doc! The sooner, the better. You do NOT need to tell your current doc you are getting a second opinion. It's your private business, and you don't owe explanations.
If you need help finding a lyme doc, just search online for 'oregon lyme' and you will have a ton of hits for patient groups who can help you find a good lyme doc. If you have test results from your current doc, take them with you, might save a little money and time. My favorite ploy with a doc is to ask innocently "Could I have a copy of those test results for my files?" I think by law they have to give them to you ... you paid for the test, after all.
The worst you will find out is that you don't have Lyme, but given the time of year and your location ... well ....... keep us posted!
"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. It's just hard to believe this is what i really have sometimes..."
The official mantra of many MDs and public health officials is: 'we don't have Lyme disease here.' Balderdash! ticks can't read maps and don't know they aren't supposed to be in Oregon. If there are trees and greenery and furry little animals (including your cat), then there are ticks. Lyme ticks are everywhere.
That turn-a-blind-eye approach to Lyme is right in line with the medical profession stating very very very seriously when AIDS first was recognized that you could only get AIDS if you were (1) gay or (2) Haitian -- because the early infections were in (1) gays and (2) Haitians. Docs, for being really well educated, are sometimes very dumb.
If you have Lyme, you have about a 50/50 chance of having one or more other infections the Lyme ticks carry, and that needs separate diagnosis and treatment. So please do think about getting another opinion -- Lyme is in the same family as syphilis, and that always gets treated because it doesn't go away by itself ... and neither does Lyme.
Don't freak out, just find a Lyme doc! The sooner, the better. You do NOT need to tell your current doc you are getting a second opinion. It's your private business, and you don't owe explanations.
If you need help finding a lyme doc, just search online for 'oregon lyme' and you will have a ton of hits for patient groups who can help you find a good lyme doc. If you have test results from your current doc, take them with you, might save a little money and time. My favorite ploy with a doc is to ask innocently "Could I have a copy of those test results for my files?" I think by law they have to give them to you ... you paid for the test, after all.
The worst you will find out is that you don't have Lyme, but given the time of year and your location ... well ....... keep us posted!
Yes, Lyme is frustrating and tricky. You may be experiencing the symptoms of die-off, when the the antibiotics kill the bacteria, which then release their toxins into your system. It takes a couple of days sometimes for that feeling to go away. It's quite common. Lyme hides in your body and suppresses your immune system, so it's not a quick cure like an earache. It takes time and patience, and usually months to kick a Lyme infection.
For the muscle twitching, try taking magnesium (Mg) supplements. Lyme bacteria use up Mg in their reproductive cycle, and Mg is needed for your muscle cells to communicate and coordinate with each other, so twitching is not uncommon. Poor sleep is another indicator.
Doxy is the old tried and true treatment for Lyme, but it is not terribly effective, from what I have read, if the Lyme infection is more than very very recent. Lyme bacteria create slimy shields in your body to hide in, where the immune system cannot detect the bacteria, which accounts for a good bit of Lyme's persistence (along with its ability to suppress your immune system).
If you think you may have been infected longer ago that a few weeks before starting the meds, then ask your doc about some other antibiotics. So-called mainstream docs who are not Lyme specialists still rely on doxy for anyone with Lyme, and if your doc is in that school of thought, then you might want to consider a different doc.
Also, were you tested for co-infections? they are separate infections carried by the same ticks, and they need separate diagnosis and usually different meds from Lyme. Again, a nonLLMD will often not think of this factor or will disregard the possibility. I am about the least outdoorsy person you can imagine, except for walks in the park, and I managed to get Lyme and babesiosis (like malaria, but carried by the Lyme ticks).
The rise and fall of your symptoms and feeling lousy sounds like something is going on, and a second opinion from a Lyme specialist may be in order. NonLLMDs often just don't have the point of view to deal with lyme and its nasty little friends.
In your situation, I would think about a second opinion. You don't need to tell your current doc you are doing that, but try to quietly get copies of all your test results from the current doc ('for my files' is my favorite excuse, because it's so nonthreatening) and then decide what to do. A different doc may see things differently. No aspersions cast on your current doc -- Lyme is a tricky beast and it gets missed fairly often.
For the muscle twitching, try taking magnesium (Mg) supplements. Lyme bacteria use up Mg in their reproductive cycle, and Mg is needed for your muscle cells to communicate and coordinate with each other, so twitching is not uncommon. Poor sleep is another indicator.
Doxy is the old tried and true treatment for Lyme, but it is not terribly effective, from what I have read, if the Lyme infection is more than very very recent. Lyme bacteria create slimy shields in your body to hide in, where the immune system cannot detect the bacteria, which accounts for a good bit of Lyme's persistence (along with its ability to suppress your immune system).
If you think you may have been infected longer ago that a few weeks before starting the meds, then ask your doc about some other antibiotics. So-called mainstream docs who are not Lyme specialists still rely on doxy for anyone with Lyme, and if your doc is in that school of thought, then you might want to consider a different doc.
Also, were you tested for co-infections? they are separate infections carried by the same ticks, and they need separate diagnosis and usually different meds from Lyme. Again, a nonLLMD will often not think of this factor or will disregard the possibility. I am about the least outdoorsy person you can imagine, except for walks in the park, and I managed to get Lyme and babesiosis (like malaria, but carried by the Lyme ticks).
The rise and fall of your symptoms and feeling lousy sounds like something is going on, and a second opinion from a Lyme specialist may be in order. NonLLMDs often just don't have the point of view to deal with lyme and its nasty little friends.
In your situation, I would think about a second opinion. You don't need to tell your current doc you are doing that, but try to quietly get copies of all your test results from the current doc ('for my files' is my favorite excuse, because it's so nonthreatening) and then decide what to do. A different doc may see things differently. No aspersions cast on your current doc -- Lyme is a tricky beast and it gets missed fairly often.
Hello again, and THANKS for your responses. I'm about 2.5 weeks into Doxycycline treatment and had a few questions.
Symptom-wise, I can't really tell if I'm having a reaction to the doxy. It doesn't seem to be following a monthly cycle or whatever, but I seem to be getting these flare-ups about once a week that tend to last for a day or two. I'll be feeling like an 8/10 for a little while, then on days like today, I'm down to a 6.5/10 with lots of pain and twitching in my calves. Thankfully, I have not felt nearly as bad as I did when I first came down with this.
I'm getting really tired of living with this, and there seams to be no rhyme or reason to the appearance of symptoms and the pain. I know I tested positive for lyme, but can lyme or co's really cause this to happen?? I'm just worried I got a false positive or something, or maybe need a different antibiotic...
I also have wierd little hives that are popping up randomly on m chest/back, and there are clusters of them on both legs in the same spots.
Ugh this *****. I was on the road to feeling better even before I started doxy, but I just can't seem to break an 8/10 on the wellness scale. Once I start feeling okay, I'll cycle back to feeling not okay. :(
Symptom-wise, I can't really tell if I'm having a reaction to the doxy. It doesn't seem to be following a monthly cycle or whatever, but I seem to be getting these flare-ups about once a week that tend to last for a day or two. I'll be feeling like an 8/10 for a little while, then on days like today, I'm down to a 6.5/10 with lots of pain and twitching in my calves. Thankfully, I have not felt nearly as bad as I did when I first came down with this.
I'm getting really tired of living with this, and there seams to be no rhyme or reason to the appearance of symptoms and the pain. I know I tested positive for lyme, but can lyme or co's really cause this to happen?? I'm just worried I got a false positive or something, or maybe need a different antibiotic...
I also have wierd little hives that are popping up randomly on m chest/back, and there are clusters of them on both legs in the same spots.
Ugh this *****. I was on the road to feeling better even before I started doxy, but I just can't seem to break an 8/10 on the wellness scale. Once I start feeling okay, I'll cycle back to feeling not okay. :(
Thank you Mojo and Jackie for the responses. I'm planning to try swimming or maybe biking soon for exercise. I'd like to go running, but I figure I should keep it low impact for now.
I will keep in mind what you said about treatment. My doctor said it can take years to clear out the lyme, so I'm pretty confident she will do what's right. But it's always good to have all the info so I can make sure.
I actually haven't really had a chance to talk with my doctor about the diagnosis yet. She called me over the phone to give me the test results, and immediately started me on doxy and told me to take a probiotic.
I do know that she tested me through Igenix, and she selected the "acute" lyme test, as opposed to the chronic lyme test. When I see her next in a few weeks, I'll get all the info. Personally, I'm not sure how long I've been sick. I do know that at the beginning of August this year, I had this strange bug bite on my leg. It was big and red, but not itchy. It did not have any rash surrounding it. A month later, I started coming down with symptoms. This might be crazy, but I almost wonder if I've had it longer though. For many years, I've had periods where my personality feels a little flat and I have word block problems. Usually happens once every month or two, and lasts for a week or so. I've just accepted it all these years, but now this problem has been blown up a lot bigger these past few months. It seems a little crazy that this might be lyme related, and that I could have had lyme for years and years, but I'm thinking I might just run it by my doctor and see what she thinks. Maybe it's nothing.
I will keep in mind what you said about treatment. My doctor said it can take years to clear out the lyme, so I'm pretty confident she will do what's right. But it's always good to have all the info so I can make sure.
I actually haven't really had a chance to talk with my doctor about the diagnosis yet. She called me over the phone to give me the test results, and immediately started me on doxy and told me to take a probiotic.
I do know that she tested me through Igenix, and she selected the "acute" lyme test, as opposed to the chronic lyme test. When I see her next in a few weeks, I'll get all the info. Personally, I'm not sure how long I've been sick. I do know that at the beginning of August this year, I had this strange bug bite on my leg. It was big and red, but not itchy. It did not have any rash surrounding it. A month later, I started coming down with symptoms. This might be crazy, but I almost wonder if I've had it longer though. For many years, I've had periods where my personality feels a little flat and I have word block problems. Usually happens once every month or two, and lasts for a week or so. I've just accepted it all these years, but now this problem has been blown up a lot bigger these past few months. It seems a little crazy that this might be lyme related, and that I could have had lyme for years and years, but I'm thinking I might just run it by my doctor and see what she thinks. Maybe it's nothing.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
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.