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Lyme disease question,...........
Marc1301
Member Posts: 31,895 ✭✭✭
I will try to keep this as short as possible.
I have a bad back, neck, knees,....etc. and have lived with this pain for years now without meds of any kind.
Something has to be going on with me though, that is different from just getting older and arthritis. I will be 51 next month.
It's getting to where every joint, and muscle in my body hurts. It will go from area to area by the day. One day I might have 6 places hurting,...the next might be 12.
I seem to be getting tendonitis a lot as well. My elbows take turns, and I have pains in my feet, and around my sternum that switches from side to side. Feels like costochondritis to me.
Muscles that haven't even been used for anything heavy will ache.
Anyway,.....as above, I have lived with pain for years, but something different has to be going on. Seems like it started going this way over the last year or two, and continues to get worse.
I haven't found a tick on me for probably 20 years, but it seems a lot of these symptoms can come from Lyme disease.
Is there a reliable test for this, and is it worth it for me to have done?
Also wondering if any of you have had it, and if you came to feel the same way as I do over time.
Any input to other issues that may be causing this would be helpful as well.
My doc keeps telling me that I am simply getting older, and due to what I have done for a living, that I am going to be in pain.
I understand all that,.....but I really feel like something different is going on.
I'm not a hypochondriac, or a wimp. I have never taken a pain pill in my life. I just know SOMETHING is going on, and in this day and age, you have to be your own advocate when it comes to medical issues.
I have a bad back, neck, knees,....etc. and have lived with this pain for years now without meds of any kind.
Something has to be going on with me though, that is different from just getting older and arthritis. I will be 51 next month.
It's getting to where every joint, and muscle in my body hurts. It will go from area to area by the day. One day I might have 6 places hurting,...the next might be 12.
I seem to be getting tendonitis a lot as well. My elbows take turns, and I have pains in my feet, and around my sternum that switches from side to side. Feels like costochondritis to me.
Muscles that haven't even been used for anything heavy will ache.
Anyway,.....as above, I have lived with pain for years, but something different has to be going on. Seems like it started going this way over the last year or two, and continues to get worse.
I haven't found a tick on me for probably 20 years, but it seems a lot of these symptoms can come from Lyme disease.
Is there a reliable test for this, and is it worth it for me to have done?
Also wondering if any of you have had it, and if you came to feel the same way as I do over time.
Any input to other issues that may be causing this would be helpful as well.
My doc keeps telling me that I am simply getting older, and due to what I have done for a living, that I am going to be in pain.
I understand all that,.....but I really feel like something different is going on.
I'm not a hypochondriac, or a wimp. I have never taken a pain pill in my life. I just know SOMETHING is going on, and in this day and age, you have to be your own advocate when it comes to medical issues.
"Beam me up Scotty, there's no intelligent life down here." - William Shatner
Comments
And fiery auto crashes
Some will die in hot pursuit
While sifting through my ashes
Some will fall in love with life
And drink it from a fountain
That is pouring like an avalanche
Coming down the mountain
My regular doc kept saying I had carpal tunnel and I was treated for it for years. Not true. Symptoms mimiced CTS but what I have is osteoarthritis which has built up bone spurs that aggravate the tendons/ligaments and cause imflamation which in turn irritates the nerves in my arm.
Second and third opinions matter especially when not knowing for sure is half the problem.
Or fibromyalgia.
+1 possibly polymyalgia if the symptoms are not as symmetric.
And fiery auto crashes
Some will die in hot pursuit
While sifting through my ashes
Some will fall in love with life
And drink it from a fountain
That is pouring like an avalanche
Coming down the mountain
If you're affected symmetrically, it's more likely rheumatoid arthritis.
They did a Rheumatoid factor blood test on me a couple of years ago, and it was negative.
I always thought fibromyalgia was a 'blanket term' for unexplained symptoms?
All I know is this is passing simple joint pain that one would expect from osteoarthritis.
Not always the first thing a doctor will think to test for. But, with your history & your query, that would have been a logical thing to check for.
Neal
Yep, simple blood test for Lyme disease.
Not always the first thing a doctor will think to test for. But, with your history & your query, that would have been a logical thing to check for.
Neal
+1 Marc,I agree but,just cuz U didn't test pos. for lymes last time, doesn't mean U don't have it now.
I really hope U don't..
Let me Ask You 1 Question Do you take A Statin Drug Such As Lipitor
For Cholesterol??
Woody
took a couple of years,docs thought it was leigon aires, til the end then it was to late.
Marc I Have been this Route Also
Let me Ask You 1 Question Do you take A Statin Drug Such As Lipitor
For Cholesterol??
Woody
No Woody,....my lipid levels are fine.
had a friend die from it,loss of mass. wittled him down to nothing.
took a couple of years,docs thought it was leigon aires, til the end then it was to late.
My weight is maintaining close to normal, but muscle is being replaced with fat per se.
My strength is probably 75%, or less of what it was a couple of years ago.
Doesn't take much to wear me out.
I just returned from my Chiropractor that I haven't seen for quite some time, due to what the original back surgeon I saw had to say.
Regardless of that, I have to try and find some relief for my back at least.
Can't sleep more than 4 hours, and the rest of the night is a fight to try and catch 20 or 30 minutes here and there.
My Chiro is joining a practice that has been here for years. The guy is an MD, and is into 'functional medicine' per se.
He said this guy would do all of the needed blood tests to rule out as much as possible, as well as testing some of my nutrient, and hormone levels.
I might just try him,......at least I can get the blood work done before the end of the year before my insurance kicks over again.
Going back to the Chiro Friday, which is his last day at his current location.
I feel kind of beat up, but better overall back wise anyway.
He also worked on my TMJ joint, and the pain in my left ear and accompanying headache is much better. Amazingly when he does this, my tinnitus is virtually cut in half as well.
I know getting older isn't fun,....especially when you have done heavy physical work for 30 plus years. This is something different though.
I just haven't had the time to be concerned about it due to the need to keep standing for my mothers health issues.
Thanks for the input.
When was the last time you had a new Mattress.
Trust me it's not that.
My bed at home is an air bed I bought in 2003,....still in perfect shape.
When I have to sleep at my mothers place, it's one of those high name 'foam' mattresses. That bed hasn't been used by anyone but me except a couple of dozen times possibly.
I also bought her an air bed, that I have slept on a few times.
Everything feels the same, regardless of the bed, or if I slept on the couch at this point.
I just knew I had lymes desease.
My doctor ran a blood test for Lymes, but he said while we are drawing blood he would test for all types of arthritus. So we did, and all came back negative.
Guess Im just getting old.[V][:)]
[img][/img]
Get to the Dr.
Scratched behind my left knee this summer. Thought it was a skeeter bite. A bit of blood. Didn't hurt.
Three days later. That is aggressively eating me.
Shot. Cpak. Steroidal creme.
Still alive.
Get to the Dr. You could have had a bite several years ago and just not known it. R/A is possible. Lupis? who knows.
There are only three or four people on the forum who have the skill to diagnose you based on your posting...
And they aren't logged on right now.
Doctor.
Tomorrow.
Just because you've lived with it for years, doesn't mean you can live with it in the future.
If you recall something that looks like this...
[img][/img]
Get to the Dr.
Scratched behind my left knee this summer. Thought it was a skeeter bite. A bit of blood. Didn't hurt.
Three days later. That is aggressively eating me.
Shot. Cpak. Steroidal creme.
Still alive.
Get to the Dr. You could have had a bite several years ago and just not known it. R/A is possible. Lupis? who knows.
There are only three or four people on the forum who have the skill to diagnose you based on your posting...
And they aren't logged on right now.
Doctor.
Tomorrow.
Just because you've lived with it for years, doesn't mean you can live with it in the future.
I don't recall ever having anything like that.
Quit hunting and beating around in the bushes in my late twenties when I went into business.
I have had a few ticks on me in my youth, but never had any signs like that.
I'm sure they are out there, but I haven't seen a tick around my property since I built the place in 1992.
Maybe it's just arthritis, but it doesn't feel like it to me.
When I have to do anything physical I hurt for days, and when I attempt to work out,....even lightly, my muscles feel like I have been training for a body building contest or something.
The bizarre part of all this is it 'seems' like something is affecting my connective tissues as well, if that makes any sense.
The back, neck, and knees were bad enough, but at least I could deal with it. I'm finding it harder to get through each day now. I can't stand for too long,....can't sit for too long,....heck, I can't even lie down for long.
Everytime I move, I pop or crack somewhere. I know it's not in my head, as people I am around hear it sometimes, and look at me like,....."was that you?"
Anyway,..my regular doc is in internist, but he seems to just wave it off, and tells me I am eaten up with osteoarthritis due to my job.
I did have a period a few years ago where my testosterone levels were low normal, but I didn't feel like this. Just tired, and less interested in sex.
That reading was fine when I had BW done 3/2012. They never did explain to me why my levels dropped in half. One doc said it was probably stress,....who knows.
Cardiologist did a C reactive protein test on me roughly 2 years ago. It was very low, which he said was good.
Trying to answer all of the points brought up by various people.
I'm going to ask some more questions about this new doc when I see my Chiro tomorrow afternoon, and if he does all of this stuff, I may make an appointment, and INSIST on being tested for Lyme, Lupus, and whatever else can cause this kind of issue.
As far as nutrient testing goes, I probably should be tested again for at least a couple of things.
I have tested low for vitamin D in the past, and was low scale normal for B-12.
They explained the B-12 away as a result of being on long term PPI therapy for GERD. The vitamin D is because I cover myself when out in the sun. Jeans, long sleeve t-shirts, hat, and even wear those drapes that go around your hat to shield your neck, ears, and sides of the face.
That is because I have lived in this Florida sun since I was a small child. Hunting, swimming, fishing, surfing, and working,.....etc.
My skin has been cooked, and the dermatologist told me I was going to be a walking case of skin cancer if I didn't change things.
Not looking for someone to diagnose me here, but this place is a good sounding board in terms of possibly finding another person that has had the same symptoms, and what it turned out to be.
Might even help me to know what tests to ask for.
Thanks for the input to all.[:)]
I skipped the doc that my chiro went in with after I found out he is big time into nutrition, and herbal stuff.
Even does that crazy AK muscle testing for allergies. That seems like voodoo to me.
Saw my cardiologist last week, and told him how I have been feeling, as well as having problems getting anyone to pay attention to my complaints.
As soon as I mentioned Lyme disease, and having been a hunter, he agreed 100% that I needed to be tested.
Said you can carry the stuff for years,......even decades before it starts to really get you.
Anyway, Just got back from Quest having blood drawn.
He's doing a Lyme titer, B-12, Vitamin D, Uric acid, and ANA which is used to detect Lupus, and several other conditions caused by inflammation.
Next week, I get a bone density scan, and a CT scan of my cervical spine. My neck has been killing me for months now, and he seemed to be concerned about that as well, after I told him my fingers, and the back of my skull tingle at times.
That and the past couple of weeks, I have been getting some bad headaches that seem to be related to my neck.
If all of these tests come back negative, he is going to refer me to a rheumatologist. Also gave me the speech that I may have to get rid of my hard headed attitude concerning ANY use of pain meds.
Whatever this crap is, it stinks really bad.
Woke up this morning with my left foot, and knee killing me. I had to put my shoes with insoles on immediately to even walk. The two outer toes, and almost the entire outside edge of my foot hurts like heck.
No swelling, redness, warmth,.....nothing but pain, after being in bed all night off my feet.[xx(]
What a heck of a way to feel at 51.
Main point was to inform that Lyme disease can reside in you for decades, and be fought off by your immune system. Then one day, it starts taking over and does its damage. I always thought that you started getting symptoms within a few months of being infected, and is the reason I never gave it any thought.
Mine may very well be negative, but I would highly suggest to be tested if you have any of these weird type symptoms whether you have seen a tick or not.
Like you I have had my share of pain and spent a lot of time in the woods. I have been checked for Lymes and a host of other things. My Doc finally asked how much diet soda or other diet products I used. I got off all them and my pain has been greatly reduced not gone but definetly reduced
I know a guy that used to have bad hip pain. He did the same as you, with the same result.
Wouldn't do me any good though, as I don't drink soda, or eat any diet products.
I may drink a 12 pack of Vernors ginger ale in a year, but I get the regular stuff.
I'm not a fan of doctors, and especially not "quackipractors". However, my wife did convince me to go see a chiropractor...a good one. He did scans and x-rays. Turned out I had some serious misalignments in my spine. I was very skeptical about his ability to "fix me" but after only a couple of manipulations, I felt 100% better, actually the best I had felt in years.
I've continued with his treatments (sleeping on a cervical pillow, laying nightly on a Denneroll, plus weekly manipulations at his office) now for about 7 weeks. I sleep much better, have not had any muscle soreness or joint pain, have regained my strength, and all the numbness is gone.
Anyway, my point is, all these symptoms may be coming from your back issues. Maybe your chiro is missing something? Did he do any scans/xrays of your spine? Did he suggest for you to do anything other than his in-office treatments? If not, maybe you should try another chiro. Just a suggestion from someone who had zero faith in them until I found the right one that "fixed" me.
I felt your pain, know what you're going through...I hope you can get it worked out!!!
Marc1301...after reading all of your posts, I thought, did I write this? I'm not lying when I say, I felt the exact same way not long ago...and it had been going on for quite a while but getting worse, especially the numbness and loss of strength. And like you, I was thinking Lyme disease since I have spent a lot of time over the last few years hunting and working at the in-laws' farm.
I'm not a fan of doctors, and especially not "quackipractors". However, my wife did convince me to go see a chiropractor...a good one. He did scans and x-rays. Turned out I had some serious misalignments in my spine. I was very skeptical about his ability to "fix me" but after only a couple of manipulations, I felt 100% better, actually the best I had felt in years.
I've continued with his treatments (sleeping on a cervical pillow, laying nightly on a Denneroll, plus weekly manipulations at his office) now for about 7 weeks. I sleep much better, have not had any muscle soreness or joint pain, have regained my strength, and all the numbness is gone.
Anyway, my point is, all these symptoms may be coming from your back issues. Maybe your chiro is missing something? Did he do any scans/xrays of your spine? Did he suggest for you to do anything other than his in-office treatments? If not, maybe you should try another chiro. Just a suggestion from someone who had zero faith in them until I found the right one that "fixed" me.
I felt your pain, know what you're going through...I hope you can get it worked out!!!
Actually that is exactly what I am planning to do.
My cardiologist wants me to wait until he gets the results from my bone density scan, and the CT of my neck though to be safe.
I know that women are typically the ones that get bone density scans, but he wants me to have one because of my symptoms combined with the fact that I have been on Nexium for 6 or 7 years for GERD. It evidently can interfere with the absorption of calcium, and a number of other nutrients.
My old chiro did x-rays years ago, but never did anything else other than adjust me when I came in.
We actually became friends after I did some HVAC work for him a few times, as well as both of us being gun nuts per se. Probably not a good thing, as I believe it changed the professional relationship if that makes sense.
The guy I plan on seeing was referred by an ortho doc, and supposedly people drive from 2 and 3 hours away to see him. Hope that means he's really good.
First visit is 1.5 to 2 hours to go over your history, and everything that hurts you, etc.
He does x-rays, and wants to see any other MRI's/CT's you have had done.
I hope that it helps, but this is far beyond just my back now, and I can't understand how my back could make my feet, knees, and hips hurt.
Any improvement is better than none for sure.
If you're having blood work done, have them test you for Celiac Disease also. I just got diagnose 3 weeks ago.
Not meant to offend Sav, but there is no 'reliable' blood test for Celiac disease, not even TTG-IGA.
The only thing that will tell you for sure is a biopsy taken during an EGD procedure.
I had a gene test done for this a few years ago, and it came back positive. I was told to go gluten free, and did it for about a year.
Didn't feel any different,.....short of my wallet being lighter, and I went back to eating normal after my last colonoscopy/EGD.
My GI doc did a biopsy, and no problem whatsoever.
He called the doc that ordered the gene test a 'quack.'
According to him, he said the best 'test' was to try a gluten free diet for a couple of months,......if no change, go back to eating normally.
Easiest way to do this without spending a lot of money, is to basically eat meat, veggies, fruit. As much fresh stuff as possible.
Looking up ingredients on cans will drive you nuts, and trying to find bread,......forget about it,.....it sucks.
I DID finally find a GF pizza crust that was pretty good, but it took awhile.
While off topic, if you are going to go down this path, feel free to e-mail me, as I spent a year doing that diet, and can probably save you money, and trouble in terms of what you can/can't eat, and what plain out sucks.
Whatever you have needs to be diagnosed and treated. It won't be cheap, but might be worth the money.
Another doc told me back problems can cause pain anywhere on the body.
I don't think it's likely your problem is Lyme's disease, but it's worth the few bucks to make sure. My doc told me the chances of getting Lyme's disease are slim under any circumstances, but almost nonexistent until a tick has had his head under your skin for more than twenty-four hours.
Whatever you have needs to be diagnosed and treated. It won't be cheap, but might be worth the money.
Another doc told me back problems can cause pain anywhere on the body.
I hope that is true,.....much easier to face than some basically incurable 'syndrome' like lupus and fibromyalgia.
quote:Originally posted by Sav99
If you're having blood work done, have them test you for Celiac Disease also. I just got diagnose 3 weeks ago.
Not meant to offend Sav, but there is no 'reliable' blood test for Celiac disease, not even TTG-IGA.
The only thing that will tell you for sure is a biopsy taken during an EGD procedure.
I had a gene test done for this a few years ago, and it came back positive. I was told to go gluten free, and did it for about a year.
Didn't feel any different,.....short of my wallet being lighter, and I went back to eating normal after my last colonoscopy/EGD.
My GI doc did a biopsy, and no problem whatsoever.
He called the doc that ordered the gene test a 'quack.'
According to him, he said the best 'test' was to try a gluten free diet for a couple of months,......if no change, go back to eating normally.
Easiest way to do this without spending a lot of money, is to basically eat meat, veggies, fruit. As much fresh stuff as possible.
Looking up ingredients on cans will drive you nuts, and trying to find bread,......forget about it,.....it sucks.
I DID finally find a GF pizza crust that was pretty good, but it took awhile.
While off topic, if you are going to go down this path, feel free to e-mail me, as I spent a year doing that diet, and can probably save you money, and trouble in terms of what you can/can't eat, and what plain out sucks.
I surely agree about the blood tests. I was determined to have the gliadin anti bodies and stopped there. The biopsy holds no appeal for me. I've been off the gluten for 27 days now and feeling significantly better. In fact all symptoms are better, none worse. I may take you up on the advice. Thanks. There is definitely a learning curve involved here.
quote:Originally posted by Marc1301
quote:Originally posted by Sav99
If you're having blood work done, have them test you for Celiac Disease also. I just got diagnose 3 weeks ago.
Not meant to offend Sav, but there is no 'reliable' blood test for Celiac disease, not even TTG-IGA.
The only thing that will tell you for sure is a biopsy taken during an EGD procedure.
I had a gene test done for this a few years ago, and it came back positive. I was told to go gluten free, and did it for about a year.
Didn't feel any different,.....short of my wallet being lighter, and I went back to eating normal after my last colonoscopy/EGD.
My GI doc did a biopsy, and no problem whatsoever.
He called the doc that ordered the gene test a 'quack.'
According to him, he said the best 'test' was to try a gluten free diet for a couple of months,......if no change, go back to eating normally.
Easiest way to do this without spending a lot of money, is to basically eat meat, veggies, fruit. As much fresh stuff as possible.
Looking up ingredients on cans will drive you nuts, and trying to find bread,......forget about it,.....it sucks.
I DID finally find a GF pizza crust that was pretty good, but it took awhile.
While off topic, if you are going to go down this path, feel free to e-mail me, as I spent a year doing that diet, and can probably save you money, and trouble in terms of what you can/can't eat, and what plain out sucks.
I surely agree about the blood tests. I was determined to have the gliadin anti bodies and stopped there. The biopsy holds no appeal for me. I've been off the gluten for 27 days now and feeling significantly better. In fact all symptoms are better, none worse. I may take you up on the advice. Thanks. There is definitely a learning curve involved here.
You are doing the right thing Sav, and since you seem to have results that are positive, I would stick with it for another month or two.
At that point, you may want to challenge yourself by reverting to your previous diet for a week or so. That would be all it should take to see if your symptoms come back.
As I said, write me if you wish, or we could even talk on the phone one day. If you have to stick to this, I can tell you where to get 12" pizza crusts that are edible, as well as pasta that you can't even tell the difference between the norm.
Unless you are going to simply stick to an almost Paleo diet, you will become frustrated if you like a pizza, or pasta on occasion.
God bless you if you can find any GF bread that is edible.[xx(]
I tried them all, as well as making my own.
Certain you have found sites like this, but if you haven't already done it, I would check out this forum.
http://www.celiac.com/gluten-free/
I don't know what symptoms you had, but most can be caused by a variety of other issues.
As before,....you say you feel better, so stick with it for now.
quote:Originally posted by Mr. Perfect
If you're affected symmetrically, it's more likely rheumatoid arthritis.
They did a Rheumatoid factor blood test on me a couple of years ago, and it was negative.
I always thought fibromyalgia was a 'blanket term' for unexplained symptoms?
All I know is this is passing simple joint pain that one would expect from osteoarthritis.
Believe you are right about the fibromyalgia. They diagnose you with that if they cannot diagnose you with anything else. I'd have to look but I think Lyme disease will leave you with a bullseye shaped rash. Osteoarthritis can be 1 side or both. Rheumatoid will be both sides at once. Could be age too.
I don't think it's likely your problem is Lyme's disease, but it's worth the few bucks to make sure. My doc told me the chances of getting Lyme's disease are slim under any circumstances, but almost nonexistent until a tick has had his head under your skin for more than twenty-four hours.
Whatever you have needs to be diagnosed and treated. It won't be cheap, but might be worth the money.
Another doc told me back problems can cause pain anywhere on the body.
A problem anywhere in the back can lead to issues in all areas below the injury. Pinched or severed nerve at any point can affect everything below it.
quote:Originally posted by Marc1301
quote:Originally posted by Mr. Perfect
If you're affected symmetrically, it's more likely rheumatoid arthritis.
They did a Rheumatoid factor blood test on me a couple of years ago, and it was negative.
I always thought fibromyalgia was a 'blanket term' for unexplained symptoms?
All I know is this is passing simple joint pain that one would expect from osteoarthritis.
Believe you are right about the fibromyalgia. They diagnose you with that if they cannot diagnose you with anything else. I'd have to look but I think Lyme disease will leave you with a bullseye shaped rash. Osteoarthritis can be 1 side or both. Rheumatoid will be both sides at once. Could be age too.
I think that is true as well for most people, but it's very temporary from what I have heard, and disappears.
There were times I camped out in the woods for a week at a time back in my hunting/camping days. If I picked up a tick in an area hard to see,....chances are I would never have noticed it.
What I posted above changes everything though. I never knew that you could carry the stuff around for years, or decades without getting ill. All depends how strong your immune system is according to my doc.
I should have that test result back by next week, and have an answer. I know this sounds crazy, IF it's positive, I have a real problem, because it means I have had it for a very long time, and I don't know how much they can do about it at that point. At the same time, at least I would know WTH is wrong with me, and causing all this pain.
Also going to find out about my neck after the CT scan.
If I have a problem in my neck, then that would explain a lot of things. I already know I have low back problems, as I am a candidate for surgery,......if my neck is in the same condition, then that could explain why I have pain over my whole body in rotation.
This is the best description I can give.
Lets say I wake up on a Monday,......my lower back, left knee, right elbow, left wrist and hand might be hurting bad.
Two days later it might be my right foot/ankle, neck, left elbow, right hip.
It constantly changes locations where it is hurting the most noticeable. Heck, at this point, it has to be pretty bad pain for me to even pay attention to it, as I have hurt for a long time.
Just not like this.[xx(]
This is chronic, never ending pain, and it is wearing me down slowly. I have never had thoughts like I have lately before in terms of not knowing how much much longer I can take this everyday.
The idea of living 15 to 20 years or more like this, and realizing it will only get worse is not a positive thing.
Heck,.....I'm only 51, and I feel like I'm 80 a good part of the time.
By the time I am finished working at my job, I have to 'force' myself to keep going to take care of other things that need to be done. The thing I look forward to most is getting my shower over with, and getting into bed, and being 'semi' comfortable for 4 to 5 hours.
Anyway, I didn't mean to have a pity party for myself,....sorry.
Please keep us posted.
And you have prayers for the best possible outcome.
Chronic pain is a bear.