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How would you describe your joint pain?
I'm just wondering how everyone here who definitely has Lyme Disease would best describe their joint pain? Is it achy, or stabbing, dull or severe? I've been having many symptoms the last couple of months reminiscent of Lyme, but could also be MS or CFS, including extreme fatigue, frequent headaches (along with a couple migraines,) some leg twitching at night while in bed, memory problems, some dizziness, a sore neck (though I've always had neck problems,) and more. I've had some muscle aches and recently my wrist was painful for a days, but I don't know if any of that would really constitute as joint pain related to Lyme.
Thanks!
p.s. I see a neurologist tomorrow. I'm hoping maybe I can figure out what's wrong then.
Thanks!
p.s. I see a neurologist tomorrow. I'm hoping maybe I can figure out what's wrong then.
Could anyone tell me if they have experienced this kind of knee pain with relationship to Lymes disease?
Joint pain exists in left knee which makes walking painful
then at times mostly while sitting or laying down an excruciating pain comes to a localized spot. This pain seems to come on and escalate much like a labor pain does - it reaches a crescendo and then fades away. It can last 2 seconds - 20 minutes and come back in a few minutes or a few days. The soft tissue around the knee is tender to the touch and feels somewhat like a bruise and the skin has a sensitive prickly feel that hurts to even lay it on a soft matress. The knee itself is extremely painful when there is any lateral movement.
Joint pain exists in left knee which makes walking painful
then at times mostly while sitting or laying down an excruciating pain comes to a localized spot. This pain seems to come on and escalate much like a labor pain does - it reaches a crescendo and then fades away. It can last 2 seconds - 20 minutes and come back in a few minutes or a few days. The soft tissue around the knee is tender to the touch and feels somewhat like a bruise and the skin has a sensitive prickly feel that hurts to even lay it on a soft matress. The knee itself is extremely painful when there is any lateral movement.
I haven't had IV treatment either. I agree. The IV is serious business with risks involved..
Thanks for sharing your story, EricaO. I'm also on orals for now and hope to get as far as I can with them. My LLMD has not yet mentioned IV, and I'm hoping I don't need to go there!
As for the above about joint pain, I wanted to update that I did test positive for Bartonella, which would explain why I've had bilateral joint pain.
As for the above about joint pain, I wanted to update that I did test positive for Bartonella, which would explain why I've had bilateral joint pain.
I don't know. Everyone I have talked to has said that once you go to IV meds there is no going back. They basically said you build up an immunity to oral meds so to try everything possible before heading to the IV method.
My biggest concern is of course contracting staff infection due to a pic line. I mean IV pic lines have their own possible issues.
I am to the point of whatever it takes. I pray every day that I am getting better. It really ***** because I am a newlywed.....just married in September and lucky for me my husband is very supportive but I feel terrible that I always feel so bad.
My biggest concern is of course contracting staff infection due to a pic line. I mean IV pic lines have their own possible issues.
I am to the point of whatever it takes. I pray every day that I am getting better. It really ***** because I am a newlywed.....just married in September and lucky for me my husband is very supportive but I feel terrible that I always feel so bad.
I know the IV's are scary but it sounds like you have a chronic case of lyme that is probably deep in the tissues and CNS. I wonder if orals will ever take care of it?????
I was diagnosed wih Lyme disease for the first time in 2002. I had the bulls eye rash on my left hand and was sent to a Dermatologist by my general Dr. The Dermatologist misdiagnosed the rash as...well just that a rash and gave me some ointment which of course did not fix the problem.
I was admitted in and out of the hospital with chest pain, vomitting, random black outs and a high grade fever. In the state of Texas after so many visits to the hospital the state requires several tests, HIV, Lyme, and a multitude of other tests and THAT is how I was finally diagnosed with Lyme disease, and started treatment. I had Lyme disease along with the co-infections epstein bar virus and parvovirus. The parvovirus caused the fever, vomitting, black outs etc. I actually developed hepititus due to all of the medications while I was in in the hospital...the meds were causing liver problems. It was a very scary time for me and my family. I followed up with 4 weeks of oral antibiotics and was told by the IDD (infectious disease doctor) that I was completely well, and I would never have an issue again......
YEAR 2008
For many years I have been having signs of Lyme disease but I also had a thyroid that was functioning by synthroid so whenever I felt lethargic or had Lyme disease symptoms I was always tested for my TSH levels, and of course they would come back fine...NO ONE thought to test me again for my LYME!!!
July 2008.
I was rushed to the ER with numbing and tingling pain all on my left hand and arm. I was terrified and convinced that I was either a. having a stroke or b. having a heart attack...Neither of these were likely being that I was 26 years old. The ER Doc sent me to a spinal surgeon thinking I must have a pinched nerve in my back and HE is the one that saw the history of Lyme and said I needed to be tested again, it was possible it was back....Now I was really confused and decided to research it and the CDC said the chances of having a relapse or second occurance were 20% so not very likely. Well, I did come back positive and decided to go see the IDD that treated me before. Not only did she not remember me but she didnt keep any of my records and MY AUNT was a nurse for her!!!! She said we needed to skip all the oral antibiotics and go straight to the IV meds. This was a conflict of interest in my opinion being that she just opened a new state of the art IV infusion facility....I of course declined and she offered to put me on 6 weeks of doxy 200mg a day...after 6 weeks I tested again and came back clear.
After I got married in Sept, I knew it was back I could feel it...I was tested and guess what! Positive again for the third time!!!!
This time not only was I positive but I also had a co-infection of Rocky Mountain Spotted Fever. I was just terrified at this point and I decided once and for all I was going to get a Dr that knew what he was doing this had to end!!!
www.lymenet.org is the place that I found my Dr in the DFW/Texas area but they are a HUGE resource for Drs. nationwide, plus it is nice to talk to people that understand what you are going through.
Anyway, I am on aggressive antibiotics...400mg of Doxy daily and 1000mg of Ceftin daily along with 14 supplements. I take 35 pills a day. This was VERY difficult for me to swallow....ha. I have never been one to pop pills and prefer natural remedies as opposed to drugging myself but I have been on treatment for almost 60 days and the changes are AMAZING.
Tonight is not the best because I am suffering joint pain....I mostly have it in my knees and calves and ankles, and I relate the pain to growing pains, when you are a kid and you are growing you just have that sore, achey pain that is so deep you cant use heat or anything to get it to diminish.
Well, I hope this helps anyone that had any questions. I just joined the site so please feel free to ask questions or post about you and your treatment I would love to learn about others!!!
God Bless.
I was admitted in and out of the hospital with chest pain, vomitting, random black outs and a high grade fever. In the state of Texas after so many visits to the hospital the state requires several tests, HIV, Lyme, and a multitude of other tests and THAT is how I was finally diagnosed with Lyme disease, and started treatment. I had Lyme disease along with the co-infections epstein bar virus and parvovirus. The parvovirus caused the fever, vomitting, black outs etc. I actually developed hepititus due to all of the medications while I was in in the hospital...the meds were causing liver problems. It was a very scary time for me and my family. I followed up with 4 weeks of oral antibiotics and was told by the IDD (infectious disease doctor) that I was completely well, and I would never have an issue again......
YEAR 2008
For many years I have been having signs of Lyme disease but I also had a thyroid that was functioning by synthroid so whenever I felt lethargic or had Lyme disease symptoms I was always tested for my TSH levels, and of course they would come back fine...NO ONE thought to test me again for my LYME!!!
July 2008.
I was rushed to the ER with numbing and tingling pain all on my left hand and arm. I was terrified and convinced that I was either a. having a stroke or b. having a heart attack...Neither of these were likely being that I was 26 years old. The ER Doc sent me to a spinal surgeon thinking I must have a pinched nerve in my back and HE is the one that saw the history of Lyme and said I needed to be tested again, it was possible it was back....Now I was really confused and decided to research it and the CDC said the chances of having a relapse or second occurance were 20% so not very likely. Well, I did come back positive and decided to go see the IDD that treated me before. Not only did she not remember me but she didnt keep any of my records and MY AUNT was a nurse for her!!!! She said we needed to skip all the oral antibiotics and go straight to the IV meds. This was a conflict of interest in my opinion being that she just opened a new state of the art IV infusion facility....I of course declined and she offered to put me on 6 weeks of doxy 200mg a day...after 6 weeks I tested again and came back clear.
After I got married in Sept, I knew it was back I could feel it...I was tested and guess what! Positive again for the third time!!!!
This time not only was I positive but I also had a co-infection of Rocky Mountain Spotted Fever. I was just terrified at this point and I decided once and for all I was going to get a Dr that knew what he was doing this had to end!!!
www.lymenet.org is the place that I found my Dr in the DFW/Texas area but they are a HUGE resource for Drs. nationwide, plus it is nice to talk to people that understand what you are going through.
Anyway, I am on aggressive antibiotics...400mg of Doxy daily and 1000mg of Ceftin daily along with 14 supplements. I take 35 pills a day. This was VERY difficult for me to swallow....ha. I have never been one to pop pills and prefer natural remedies as opposed to drugging myself but I have been on treatment for almost 60 days and the changes are AMAZING.
Tonight is not the best because I am suffering joint pain....I mostly have it in my knees and calves and ankles, and I relate the pain to growing pains, when you are a kid and you are growing you just have that sore, achey pain that is so deep you cant use heat or anything to get it to diminish.
Well, I hope this helps anyone that had any questions. I just joined the site so please feel free to ask questions or post about you and your treatment I would love to learn about others!!!
God Bless.
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