Hi, I know there are a few others who don't live with daily pain, right? I was having muscle pain every 28 days, but haven't since Nov 2008 (knock on wood). I've had 2 episodes (when I was 29) where I woke up with a very painful, swollen right knee that lasted a day or 2.
Other than that, I don't have constant pain. I have dealt with severe depression and anxiety and debilitating fatigue for years.
My new LLMD ordered a bunch of tests before my first appointment, and many of them are for inflamation issues. I feel it is pointless to do those (with our insurance right now, we will have to pay out of pocket for a lot of them, so I'm not crazy about that right now).
take care, Ocean
Posted by luvs2ride (Member # 8090) on :
Inflammation in the brain causes depression and anxiety not to mention migraines, mental disorders.
Inflammation of the heart causes heart disease. Inflammation of the gut causes Croan's disease. Inflammation causes diabetes, kidney disease, etc, etc, etc.
Inflammation isn't always in obvious places.
Posted by Ocean (Member # 3496) on :
Hey,
Thanks, I actually started ponding that after I posted. I definitely have the brain fog and heart palps. And like I said, have had a couple of episodes of severe knee pain not related to injury. Occassionally I get the 'stiff' feeling too.
I feel better now about getting them done.
Thanks! Ocean
Posted by Munch (Member # 11323) on :
I used to have muscle pain or "fibro" type pain. Just before the 2 year mark on Abx, the pain went away (one year ago) and has not come back.
My LLMD thinks muscle pain is caused by spirochetes living in muscle tissue. My endocrinologist says it's because I'd been on growth hormone for 6 months. My internist says it's because my thryoid is now in the correct ranges.
I don't really care who is right. Maybe it's a combination of all of the above. Years later, I think I was naive to go accept a "Fibro" diagnosis because spirochetes like nerve cells. When they push on those so called "tender points" they are just pushing on inflammed nerve roots.
Posted by lymie68 (Member # 18442) on :
Joint and muscle pain have not been a problem for me. I do take a lot of anti-inflammatories, though.
Posted by adamm (Member # 11910) on :
Most of the time, my only symptoms are tremors and cognitive impairment.
Posted by tickssuck (Member # 15388) on :
Other than horrible neck pain, no other joint or muscle pain here. Terrible neuro stuff like tremors, internal vibrations, numbness, heart palps, blood pressure deregulation on and on.....TS
Posted by Ocean (Member # 3496) on :
Thanks guys for your responses. I know when I was given an Elisa back in 1997 (which was neg of course!) I thought the doctor was CRAZY! I thought joint pain was the 'only' symptom of Lyme, and I was soooo 'relieved' when it was negative. Ha! I rejoiced when my LLMD told me based on my Igenex that he thought I had Lyme. That's what being sick for a loooon time does to ya!
Take care, Ocean
Posted by Starfall1969 (Member # 17353) on :
When I first started on this lovely journey, I had a lot of neck/back/TMJ/other joint pain.
Recently it's only occasionally that I get that type of pain.
I have more problems with shortness of breath and vision problems.
Posted by Jessibell777 (Member # 18235) on :
Thanks for posting this OCEAN. It answers a lot of the questions around the "subtle" symptoms that my son has.
His "other" grandparents and family don't believe that it's really anything to worry about and think I'm NUTS for continuing to try to treat him and take him all the way to Dr. C in MO, when he "looks fine".
He does have three positive Wester Blot results within the past three months. AND symptoms similar to the ones ya'll mentioned.
Posted by Julie F. (Member # 15956) on :
I haven't had any joint or muscle pain since August, and even before then, it was very minimal.
It's mostly twitching and tingling for me, with a bit of insomnia and mood swings thrown in. Annoying, but not painful.
Posted by disturbedme (Member # 12346) on :
I don't have a lot of pain either. The only real pain that I've ever had with this was very bad headaches (which have pretty much subsided now), neck stiffness and pain, and muscle cramps and some joint stiffness. Other than that, it's not a big problem for me. I have other issues such as neuro (twitching and feeling off and weird and word problems and fog, etc., etc.) and heart involvement that I feel are my worst issues. The heart stuff is very scary to me since your heart is like the most important organ.
Posted by Ocean (Member # 3496) on :
Starfall, It IS a 'lovely' journey, isn't it!??
Jessi, I think that most people who are not educated in Lyme think it just causes some joint discomfort. I did. No way did I ever think that this 'thing' that was taking over and ruining my life could be Lyme! I also knew that my family didn't understand what I was going through because I sure didn't!
Julie, Has your pain subsided due to treatment, or did it just stop on it's own?
Disturbed, yes the heart thing is the worst for me. When my husband changes insurance in March, I want to see if I can get an ECHO or something just to put my mind at ease, or to see if something really is wrong. I think one of my first concrete symptoms was cardiac. I rememeber sitting on the track stretching after cross country practice (we'd run mile repeats that day up on the track). I was talking and joking with my friends and all of a sudden, my heart just took off. I stood up holding my chest saying something was wrong and my mom who was an assistant coach, put me in her car and a few minutes later it stopped.
Ahh, yes, the 'looking fine'. I put on a smile for the outside world quite a bit. When people asked how I was, I would say, "good, how are you?" What a lie! Sometimes I thought, 'if they only knew'.
Keep fighting for your son, you are doing a great job for him and when he gets well, you are sparing him sooo much pain and suffering in the long run!
Take care, Ocean
Posted by Julie F. (Member # 15956) on :
Hi Ocean, The pain subsided due to antibiotic treatment (orals). I have been very lucky in the fact that I started treatment about 6 weeks after I was bit. So I would say that after about 4-5 months of treatment, the pain part was over for me.
I also have bart and babs, but I think it is bart that has been kicking my tail this whole time. Maybe even more than the lyme. The twitching, tingling, erratic sleep, sadness makes me think I have a stubborn case of bart. So maybe this is the case for you?
Best wishes to you!
Posted by Ocean (Member # 3496) on :
Hey Julie, My co-infections came back Neg from Igenex. However the first doctor to ever tell me I had Lyme had used electrodermal testing and he said I tested positive for Lyme and Babesia. And I had only gone to him for a physical, he seemed very surprised with the findings.
I've read co's can make everything so much worse. My first LLMD said he thinks I have Bart even if it didn't show up.
Who knows! Glad you are doing better and it was found early, hoping for a complete recovery for ya!
Take care, Ocean
Posted by Wimenin (Member # 15294) on :
I dont have the bad joint/muscle pain. For me it was never the main problem. Mine was always neuro, cognitive, anxiety, brain fog, senses problems, hellacious migraines, twitches, cns, emotional, etc, etc.. issues.
As was previuosly posted...where the inflammation is determines an awful lot of symptoms. For myself it was the meningitis/encephalitis inflammation that was wreaking havoc. (Last night, another classic migraine rolled in).
But Im not on any anti inflammatories unless its critical migraine time...like last night. Otherwise, its just abx, supplements, and eating right (no sugar, no starches, no msg, no caffeine, etc..)
Posted by Starfall1969 (Member # 17353) on :
Ocean,
I know what you mean about the putting on a face for the world.
I usually respond with "I'm good, how are you?" to people who don't know what I've been going through (we go to a VERY large church).
My response to people who do know what I'm going through is usually, "Still up and down."
Sometimes I forget and respond "I'm good" to someone who knows what's going on, and they get wide-eyed and say, "Really? You're better now?"
Then they're disappointed when I tell them I'm still dealing with it and am still not really diagnosed.
And yes, I've gotten the "You LOOK good." line a lot.
Posted by ajisuun (Member # 17658) on :
I used to have severe joint pain, but now only have stiffness or mild pain if I'm herxing. For me the pain stopped after 2 years of treatment and when I added Cat's Claw to my supplements. I had a nasty herx when I started Cat's Claw-- increased joint pain, heart palps, headache. Then the joint pain stopped and hasn't been back. My main problem is fatigue, headaches and hoarseness. I have some other weird symptoms too, but those I could live with forever if I had to.