Aa
Its gotta be lyme right? ?
Some how 3 weeks ago I ruptured a tendon doing something I do every day and have done thousands of times. I was just stretching like I always do and SNAP something in my leg starts hurting. The next day I can't walk, so i go to the doc and she states a smaller hamstring has partially tore. Why? Is any ones guess, I had been having some very mild pain in that area, but din't think anything of it because I deal with far worse pain every day in my nerves. However I have been known to have a very high pain tolerance and not know when something is hurt until it gets really bad.
But alas, this tiny pain that hung around for 2 weeks was a prelude to me injuring my self I guess.Now I still can barely touch my toes, 3 weeks later, and the swelling inside my leg is making my nerve pain on that side even worse, and makes my leg falls asleep if I don't set just right and keep the leg changing positions and strait.
All docs except my PCP seem to think I am over dramatic or nuts, or something. With the exception of one I saw that was totally the other way, and has been "ABSOLUTELY CONVINCED" it is MS, and everything else under the sun, and all are negative upon further testing.
Its finally cooling off now. heat is the main killer for me, any thing that gets my core temperature up too high.
I still have to wait until December 23 or something to see a lyme physician, to even get the IgeneX test.
Could my injury be caused by Lyme? That seems odd, but so does having such a major injury happen when just touching my toes ... so...I'm not sure. Inflammation of the nerves is still on the table for me, but I don't think it is MS at this point.
LYME can cause inflammation of the nerves?? And even demylinate, I am pretty sure I read that some place...
What do you 'lyme experts' think, haha
But alas, this tiny pain that hung around for 2 weeks was a prelude to me injuring my self I guess.Now I still can barely touch my toes, 3 weeks later, and the swelling inside my leg is making my nerve pain on that side even worse, and makes my leg falls asleep if I don't set just right and keep the leg changing positions and strait.
All docs except my PCP seem to think I am over dramatic or nuts, or something. With the exception of one I saw that was totally the other way, and has been "ABSOLUTELY CONVINCED" it is MS, and everything else under the sun, and all are negative upon further testing.
Its finally cooling off now. heat is the main killer for me, any thing that gets my core temperature up too high.
I still have to wait until December 23 or something to see a lyme physician, to even get the IgeneX test.
Could my injury be caused by Lyme? That seems odd, but so does having such a major injury happen when just touching my toes ... so...I'm not sure. Inflammation of the nerves is still on the table for me, but I don't think it is MS at this point.
LYME can cause inflammation of the nerves?? And even demylinate, I am pretty sure I read that some place...
What do you 'lyme experts' think, haha
I'm sorry to hear your family isn't very supportive, but it's not uncommon for family members who have never had Lyme (or anything like it) to not believe or understand that you really are ill. If you can find a Lyme support group either near you or online, it can be a great help, as long as it's a group that has a positive and supportive view. Sometimes Lyme disease can mess with emotions, and if you find yourself in a group of downhearted and depressed Lyme patients, then find a new group that gives you the support and outlook that you need.
Lyme and its miseries do go away: it just takes proper diagnosis, appropriate medication, a wise doc, and (for the patient) good food, good sleep, and the passage of time.
In one post I made above here is this: "About funding, I don't see in a quick scroll through the posts above if LymeTAP and LymeLight Foundation are mentioned. They are charities that can assist in funding testing etc., to my understanding. They likely have websites or are linked somewhere on the net." Don't think of it as charity -- think of it as a downpayment on your future. Once you are back on your feet, you can make contributions over time (as you are able to afford it) to organizations like the two mentioned here or other ones. Consider it payback to the Lyme bacteria. Grrrr!
Keep us posted -- you can do this.
You are not alone in all this, however it may feel that way. Partly it is that Lyme bacteria mess with your emotions (through the human endocrine system), but sad and miserable feelings go away with treatment for Lyme. That you are on this website trying to figure out what's up and what to do about it shows you are strong and determined. I admire your grit, and it will serve you well going forward.
Lyme and its miseries do go away: it just takes proper diagnosis, appropriate medication, a wise doc, and (for the patient) good food, good sleep, and the passage of time.
In one post I made above here is this: "About funding, I don't see in a quick scroll through the posts above if LymeTAP and LymeLight Foundation are mentioned. They are charities that can assist in funding testing etc., to my understanding. They likely have websites or are linked somewhere on the net." Don't think of it as charity -- think of it as a downpayment on your future. Once you are back on your feet, you can make contributions over time (as you are able to afford it) to organizations like the two mentioned here or other ones. Consider it payback to the Lyme bacteria. Grrrr!
Keep us posted -- you can do this.
You are not alone in all this, however it may feel that way. Partly it is that Lyme bacteria mess with your emotions (through the human endocrine system), but sad and miserable feelings go away with treatment for Lyme. That you are on this website trying to figure out what's up and what to do about it shows you are strong and determined. I admire your grit, and it will serve you well going forward.
My family does not believe in lyme, also they are not supportive whatsoever. Not a good relationship, they would just scoff at me. And they also have no money.
My friends, are as poor as I am, and I don't have many since I moved. And really I don't feel comfortable asking anyone for financial assistance, because I'd have to pay back money I still wouldn't have, or be a taker, which is a good way to lose your friends.
I can try lyme tap and the other. I'll search for them and see. I think my only hope will be my PCP, for the test. The doc I am seeing wants 250$ cash for the test not covered by insurance, and I pain don't have it.
:((
My friends, are as poor as I am, and I don't have many since I moved. And really I don't feel comfortable asking anyone for financial assistance, because I'd have to pay back money I still wouldn't have, or be a taker, which is a good way to lose your friends.
I can try lyme tap and the other. I'll search for them and see. I think my only hope will be my PCP, for the test. The doc I am seeing wants 250$ cash for the test not covered by insurance, and I pain don't have it.
:((
About funding, I don't see in a quick scroll through the posts above if LymeTAP and LymeLight Foundation are mentioned. They are charities that can assist in funding testing etc., to my understanding. They likely have websites or are linked somewhere on the net. And asking family and close friends to front some cash to take care of the initial visits and tests should be considered. Take care -- keep us posted -- !
I think the appointments are about 200$, if my insurance covered half, or even 75% I still couldn't afford it since the drive costs me over 80$ in fuel, and I am not able to work right now, so no income other than what little I can scrape up doing odd jobs when I feel well.
It's strange, some day I feel good, others just awful. I can for some stretches, go back to my normal intense workouts and feel great. Then some time later I'll be tripping over my own feet and running face first into walls and doors again.
I broke my nose 2 weeks ago because I smashed into a door frame corner. I had been running into things a lot on my left side for about a month and a half, I finally figured out why... My peripheral vision is disappearing in that eye!! D: I really hope that isn't going to continue!!
I'll try to keep notes. But I always seem to forget to do things like that. On the computer sounds like a good idea.
It's strange, some day I feel good, others just awful. I can for some stretches, go back to my normal intense workouts and feel great. Then some time later I'll be tripping over my own feet and running face first into walls and doors again.
I broke my nose 2 weeks ago because I smashed into a door frame corner. I had been running into things a lot on my left side for about a month and a half, I finally figured out why... My peripheral vision is disappearing in that eye!! D: I really hope that isn't going to continue!!
I'll try to keep notes. But I always seem to forget to do things like that. On the computer sounds like a good idea.
Here is a suggestion:
Make notes everyday of what you eat, how you feel, and how well your digestive system is working that day. I would use an Excel spreadsheet, but just columns in a Word document work too. Then print it out and take it to your next doc's appointment -- some MDs don't want to read details and want you to summarize how things are going, but some MDs *like* the data, because it does not rely on the patient's memory, which can be inaccurate or incomplete simply because we human are tired, ill, and forgetful.
I had one MD who did not not want to read my notes (it would have taken perhaps ten minutes total), and he wanted me to give him the whole story in a few sentences. I was useless at it, partly because Lyme can affect memory. I eventually went to another Lyme doc, who *loved* my chart! When I went to an appointment, I would give the receptionist the latest installment of my printed-out chart (since my last appointment), and the doc would read through it quickly before I went into his office. That way we were working from the same information (and I always took two copies: one for the doc, the other one for me).
The chart had columns for date, meds taken (which ones, how much, at what time of day, including both prescription and non-prescription), what I ate, how I felt during that day and night (and how well I slept or didn't), any significant changes, and other points I thought different or significant.
I kept the chart on my computer, so I could add to it during the day as I thought of something, and then would print the whole thing since my last appointment, right before going to the current appointment. The doc loved it, and it made life easier for me.
===================
About the doc in MI taking insurance: have you checked with your insurance company to see if you can use an out-of-network MD and still get at least partial reimbursement? Usually medications are covered under insurance even if the doc is not 'in network', and many policies will reimburse for an out-of-network doc, but just at a somewhat lower rate. (For example, the ins. co. will pay at their regular rates for prescription meds even if the prescription is from an out-of-network doc.) If you need to make up the difference in cost, ask family for an early birthday present to get the testing done. As anyone with Lyme knows, the best gift of all is good health.
All good wishes to you -- let us know how you do, ok?
Make notes everyday of what you eat, how you feel, and how well your digestive system is working that day. I would use an Excel spreadsheet, but just columns in a Word document work too. Then print it out and take it to your next doc's appointment -- some MDs don't want to read details and want you to summarize how things are going, but some MDs *like* the data, because it does not rely on the patient's memory, which can be inaccurate or incomplete simply because we human are tired, ill, and forgetful.
I had one MD who did not not want to read my notes (it would have taken perhaps ten minutes total), and he wanted me to give him the whole story in a few sentences. I was useless at it, partly because Lyme can affect memory. I eventually went to another Lyme doc, who *loved* my chart! When I went to an appointment, I would give the receptionist the latest installment of my printed-out chart (since my last appointment), and the doc would read through it quickly before I went into his office. That way we were working from the same information (and I always took two copies: one for the doc, the other one for me).
The chart had columns for date, meds taken (which ones, how much, at what time of day, including both prescription and non-prescription), what I ate, how I felt during that day and night (and how well I slept or didn't), any significant changes, and other points I thought different or significant.
I kept the chart on my computer, so I could add to it during the day as I thought of something, and then would print the whole thing since my last appointment, right before going to the current appointment. The doc loved it, and it made life easier for me.
===================
About the doc in MI taking insurance: have you checked with your insurance company to see if you can use an out-of-network MD and still get at least partial reimbursement? Usually medications are covered under insurance even if the doc is not 'in network', and many policies will reimburse for an out-of-network doc, but just at a somewhat lower rate. (For example, the ins. co. will pay at their regular rates for prescription meds even if the prescription is from an out-of-network doc.) If you need to make up the difference in cost, ask family for an early birthday present to get the testing done. As anyone with Lyme knows, the best gift of all is good health.
All good wishes to you -- let us know how you do, ok?
Should I try a fiber supplement instead of so many veggies?
I've only started doing that because the docs at the er told me I must need MORE fiber,and they don't seem to believe me when I say i have been grazing plant like cow. (I first thought it was appendicitis due to the pain)
Normally I eat a high protein and high fat diet, with oats in the morning and green beans at night. Normally I would have a biscuit or toast too in the morning but not now since it seems to make constipation worse.
I hate to use laxatives because they just ruin your day, and its easy to not make it to the bathroom if you are far away. though i feel so much better afterwards.
I also drink as much water as i can.
I wish i could see the lyme physician sooner than December. There is only one in MI who takes insurance. I hope I can just get on some antibiotics and fix this mess :(
I've only started doing that because the docs at the er told me I must need MORE fiber,and they don't seem to believe me when I say i have been grazing plant like cow. (I first thought it was appendicitis due to the pain)
Normally I eat a high protein and high fat diet, with oats in the morning and green beans at night. Normally I would have a biscuit or toast too in the morning but not now since it seems to make constipation worse.
I hate to use laxatives because they just ruin your day, and its easy to not make it to the bathroom if you are far away. though i feel so much better afterwards.
I also drink as much water as i can.
I wish i could see the lyme physician sooner than December. There is only one in MI who takes insurance. I hope I can just get on some antibiotics and fix this mess :(
Lyme can really bother any part of your organs. I had a hip replaced when I was only 48 because lyme ate the cartiledge. I have had it over 25 years.
I just searched online for
-- does lyme disease cause constipation --
and got a fair number of search hits.
It sounds like, from what I read, that given the various interlocking symptoms that Lyme and the various co-infections one can get. I would not assume that sugar, carbs and milk are the direct causes, and would consider other possibilities.
Laxatives for the time being may be helpful to avoid constipation until things sort themselves out. If your gut is already overloaded, then 'cramming the fiber every day' may be giving you the opposite effect of what is intended. I recently had a bout of slow intestinal function and realized I was eating a lot of meat and had stopped eating apples, although I normally eat not much meat but do eat apples every day. Consider that increasing fiber may be having the opposite of the desired effect, at least till things sort out.
I have hereditary milk intolerance, so I drink lactose-free milk and it's usually also fat free. Works well for me. Hope you feel better soon!
-- does lyme disease cause constipation --
and got a fair number of search hits.
It sounds like, from what I read, that given the various interlocking symptoms that Lyme and the various co-infections one can get. I would not assume that sugar, carbs and milk are the direct causes, and would consider other possibilities.
Laxatives for the time being may be helpful to avoid constipation until things sort themselves out. If your gut is already overloaded, then 'cramming the fiber every day' may be giving you the opposite effect of what is intended. I recently had a bout of slow intestinal function and realized I was eating a lot of meat and had stopped eating apples, although I normally eat not much meat but do eat apples every day. Consider that increasing fiber may be having the opposite of the desired effect, at least till things sort out.
I have hereditary milk intolerance, so I drink lactose-free milk and it's usually also fat free. Works well for me. Hope you feel better soon!
Thanks
Oh, and i forgot to mention, new problems digestive related...sudden onset industrial strength constipation... wonderful! I will have a good week, eating al the same healthy foods, and one day it just quits moving, and I no longer have the urge to go to the bathroom, and it will stay that way and I will have more and more digestive pain until I blow it out with heavy duty laxatives.
I get extremely bloated when i don't use the bathroom after a day or two, and can't eat without sharp pain. So bloated it makes me have to pee like every 15 minutes even when there isn't any left!!
So its very uncomfortable.
No explanations for this yet either, and its not getting better its very distressing as it can instantly dictate my plans for the next 2 days, to being tethered to the bathroom, or if I ignore it I get really ill.
This new problem just makes me want to cry... I already gave up sugars, all carbs, and most milk. I have to eat fats and protein because I get weak without it, but I cram the fiber every day, and its like it does nothing to stop the constipation happening. :(
Oh, and i forgot to mention, new problems digestive related...sudden onset industrial strength constipation... wonderful! I will have a good week, eating al the same healthy foods, and one day it just quits moving, and I no longer have the urge to go to the bathroom, and it will stay that way and I will have more and more digestive pain until I blow it out with heavy duty laxatives.
I get extremely bloated when i don't use the bathroom after a day or two, and can't eat without sharp pain. So bloated it makes me have to pee like every 15 minutes even when there isn't any left!!
So its very uncomfortable.
No explanations for this yet either, and its not getting better its very distressing as it can instantly dictate my plans for the next 2 days, to being tethered to the bathroom, or if I ignore it I get really ill.
This new problem just makes me want to cry... I already gave up sugars, all carbs, and most milk. I have to eat fats and protein because I get weak without it, but I cram the fiber every day, and its like it does nothing to stop the constipation happening. :(
I can relate to your pain tolerance, and also to its repercussion of allowing you to continue to do something when your body is (unsuccessfully) trying to tell you not to. Sounds like it's possible you might have had a small tear with mild pain and after a few weeks of pretty much ignoring it, all it took to make it a big tear was a stretch. Ouch. Be extra nice and very gentle to it for a few weeks and hopefully it will respond.
The Lyme bacteria are spirochetes: they can change form to evade the immune system or any other threats, but the basic spirochete shape is like a tiny corkscrew and they burrow into tissue or wherever they are going. I have read they like connective tissue best. Could they have weakened the tendon enough to make it tear more easily? I don't know. I would guess it's not impossible.
I read an article where researchers had identified 350 diseases that Lyme infections had mimicked, so unfortunately for us it can take many different forms that make it that much harder to identify. I suppose a lot depends on where it colonizes in each individual. (Seems like we're caught in the middle of a bad sci-fi movie, doesn't it?)
My most obvious symptom is in my knees, but as I am going through treatment I am having herxing (herxheimer reactions) in other areas and systems in my body, so it appears that the little buggers are most noticeably in my knees, but are also in most of my other cartilage and my muscles and also in my nervous system. And I've been so tired for so long that I didn't even identify that as a symptom because it had become my "normal" state. Until it lifted for just a few hours a couple weeks ago - and wow! what a difference to feel fully alive. I am looking forward to feeling like that again!
It's a notable observation that your symptoms get so much worse when your core temperature rises. The Lyme bacteria do not like oxygen and they do not like heat. If indeed your issues are caused by Lyme, it seems like maybe either they are dying when your core gets too hot (and your body is reacting to the die-off, so a strong herx reaction), or the bacteria are staging a protest and emphatically telling the landlady to turn the heat down. Either way, hopefully with autumn approaching it will be easier to stay cool and avoid triggering the worst of the nerve pain, whatever its cause.
Hang in there until you can see a Lyme doc - we'll all hope he or she can shed some light for you.
The Lyme bacteria are spirochetes: they can change form to evade the immune system or any other threats, but the basic spirochete shape is like a tiny corkscrew and they burrow into tissue or wherever they are going. I have read they like connective tissue best. Could they have weakened the tendon enough to make it tear more easily? I don't know. I would guess it's not impossible.
I read an article where researchers had identified 350 diseases that Lyme infections had mimicked, so unfortunately for us it can take many different forms that make it that much harder to identify. I suppose a lot depends on where it colonizes in each individual. (Seems like we're caught in the middle of a bad sci-fi movie, doesn't it?)
My most obvious symptom is in my knees, but as I am going through treatment I am having herxing (herxheimer reactions) in other areas and systems in my body, so it appears that the little buggers are most noticeably in my knees, but are also in most of my other cartilage and my muscles and also in my nervous system. And I've been so tired for so long that I didn't even identify that as a symptom because it had become my "normal" state. Until it lifted for just a few hours a couple weeks ago - and wow! what a difference to feel fully alive. I am looking forward to feeling like that again!
It's a notable observation that your symptoms get so much worse when your core temperature rises. The Lyme bacteria do not like oxygen and they do not like heat. If indeed your issues are caused by Lyme, it seems like maybe either they are dying when your core gets too hot (and your body is reacting to the die-off, so a strong herx reaction), or the bacteria are staging a protest and emphatically telling the landlady to turn the heat down. Either way, hopefully with autumn approaching it will be easier to stay cool and avoid triggering the worst of the nerve pain, whatever its cause.
Hang in there until you can see a Lyme doc - we'll all hope he or she can shed some light for you.
Good thinking on your part! Many docs still live inside the paradigms and assumptions they learned long ago in med school, but things do change ... like the arrival of Lyme on a big scale.
Generally speaking, Lyme often affects many bodily systems and aspects. Lyme bacteria like to hide in areas of low blood flow, to avoid activity by the human immune system in pursuit of killing the Lyme bacteria. Among areas of blood flow are ... cartilage. Everyone is different in how they feel when they have Lyme, so keep track of your symptoms and meds (prescription and otherwise, even aspirin/other painkillers) on a DAILY basis, so you can take the raw data to your appointments with your Lyme doc.
If you start recording that now, you'll likely have a good set of data for your Lyme doc to review at your first appointment. The doc can see symptoms and trends in that data chart that don't see obvious or related to what you might have. Some docs tend to wave away such charts and say "Oh, just tell me how you feel", but that didn't work for me, and it also showed me that a doc NOT wanting to review my daily data chart (incl. meds, foods, sleep, and strange symptoms I might notice) was a doc who didn't understand how much Lyme messes with memory and thought process in many of us.
This 'just tell me' approach doesn't mean the doc is a bad one, just a doc that doesn't maximize data flow from patient to doc. So keep notes between now and when your appointment time comes, and print out a set for the doc and take a set with you when you go to the doc. All these notes may provide important information to future docs, if you need any.
====================================
Back to your specific questions:
-- You say: "Could my injury be caused by Lyme?" I'm not a doc, but I would say yes, it could. Lyme bacteria like to hide where the human immune system can't reach them, and that esp. includes *cartilage*.
-- You say: "That seems odd, but so does having such a major injury happen when just touching my toes ... so...I'm not sure." Lyme loves cartilage, which also connects muscles to bones and joints. So I'd say yes, it could.
-- You say: "Inflammation of the nerves is still on the table for me, but I don't think it is MS at this point." Before accepting an MS diagnosis, I would want to see a Lyme doc I trusted to confirm that I didn't have Lyme.
-- You say: "LYME can cause inflammation of the nerves?? And even demyelinate, I am pretty sure I read that some place..." Lyme does lots of odd stuff, and it can be quite different from one Lyme patient to another. That's why having a good and experienced Lyme doc is so important.
Non-Lyme docs often just don't understand Lyme, largely because Lyme is a new and emerging disease and medical school and practice don't move very fast. So hang on! You sound like you are holding up fine and working hard to get a proper diagnosis and accurate treatment. Many of us have been in situations similar to yours, so we hear you.
Let us know how you do, okay?
Generally speaking, Lyme often affects many bodily systems and aspects. Lyme bacteria like to hide in areas of low blood flow, to avoid activity by the human immune system in pursuit of killing the Lyme bacteria. Among areas of blood flow are ... cartilage. Everyone is different in how they feel when they have Lyme, so keep track of your symptoms and meds (prescription and otherwise, even aspirin/other painkillers) on a DAILY basis, so you can take the raw data to your appointments with your Lyme doc.
If you start recording that now, you'll likely have a good set of data for your Lyme doc to review at your first appointment. The doc can see symptoms and trends in that data chart that don't see obvious or related to what you might have. Some docs tend to wave away such charts and say "Oh, just tell me how you feel", but that didn't work for me, and it also showed me that a doc NOT wanting to review my daily data chart (incl. meds, foods, sleep, and strange symptoms I might notice) was a doc who didn't understand how much Lyme messes with memory and thought process in many of us.
This 'just tell me' approach doesn't mean the doc is a bad one, just a doc that doesn't maximize data flow from patient to doc. So keep notes between now and when your appointment time comes, and print out a set for the doc and take a set with you when you go to the doc. All these notes may provide important information to future docs, if you need any.
====================================
Back to your specific questions:
-- You say: "Could my injury be caused by Lyme?" I'm not a doc, but I would say yes, it could. Lyme bacteria like to hide where the human immune system can't reach them, and that esp. includes *cartilage*.
-- You say: "That seems odd, but so does having such a major injury happen when just touching my toes ... so...I'm not sure." Lyme loves cartilage, which also connects muscles to bones and joints. So I'd say yes, it could.
-- You say: "Inflammation of the nerves is still on the table for me, but I don't think it is MS at this point." Before accepting an MS diagnosis, I would want to see a Lyme doc I trusted to confirm that I didn't have Lyme.
-- You say: "LYME can cause inflammation of the nerves?? And even demyelinate, I am pretty sure I read that some place..." Lyme does lots of odd stuff, and it can be quite different from one Lyme patient to another. That's why having a good and experienced Lyme doc is so important.
Non-Lyme docs often just don't understand Lyme, largely because Lyme is a new and emerging disease and medical school and practice don't move very fast. So hang on! You sound like you are holding up fine and working hard to get a proper diagnosis and accurate treatment. Many of us have been in situations similar to yours, so we hear you.
Let us know how you do, okay?
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