Thursday, July 13, 2006

My knee and FREAKIN' Lyme disease or what ever is wrong with me

Okay. . .so I am having my knee flare up and it sucks. My current flare-up began on vacation--so right now I am at two weeks of a stiff and swollen knee, with varied severity. Yesterday was the worst--today I took the day off to elevate and ice, but mainly I just took the day off because my job requires lots of bending, stooping, lifting, etc. So I guess my frustration is that I am no where different than I was a year ago, two years ago or three years ago. My knee swells and gets stiff. By the time the dr. can get me in the swelling goes away. MRI's, X-Rays and a barrage of tests ranging from Lyme to the B-what-ever -it-is thing. . . .all come up clean. Everything comes up clean. I am suppposed to be well but I am not. . . . . . . . . . .

Here are past blogs documenting my knee issues. Most current vents to oldest.

Friday, December 09, 2005
The Rheumatologist. . . . . Current mood: determined
Today was a VERY interesting day at the Rheumatologist and my head is spinning. I say that I am determined because I am determined to get the bottom of what is happing to ME. I got a lot of blood work done today and my aspirated (which is a good thing even though it's uncomfortable). I have very mixed feelings about my visit with the dr. He does not feel that I am having lyme problems because my issues with my knee actually stem back further than when I was first diagnosed with LYME. So . . you all may be wondering why this is a surprise to me . .well the knee issues stemmed back to middle school and early high school. I don't really remember the issue (I had A LOT of other things going on at that time. . my knees where the LAST things on my mind) but the dr. had the medical records from when I was still under my parent's insurance (I just happened to get a rheumatologist in my previous clinic). It was the same knee with the same issue . . at least 3 1/2 years before I was ever diagnosed with LYME. Very odd. Anyway, I am open to anything at this point. The Dr. actually thinks that I have some genetic disorder that is related to arthritis(something called B-27 or something like that)because I have not responded to any of my previous anti-inflammatories and only one knee is affected. Time will tell. He did order a Lyme test among other things when my blood was drawn. Anyway. . .after my LONG day at the dr I treated myself to some time at the spa. :-)

Sunday, November 27, 2005
Still puffy and swollen. . . Current mood: blah
Today I officially started some of my new supplement regimine. Besides my multivitamin, I'm now taking some Omega 3's and Cat's Claw. Both are to help combat inflammation. I'll also be adding some anti-oxidents, primrose oil, magnesium, and b-complex. I'm not sure yet about the magnesium or b-complex because most multivitamins contain these. . not sure if I'll be adding to much into my diet. If any of you readers know, drop me a line okay? :-)

Saturday, November 26, 2005
swollen and puffy 2 Current mood: bored
Well David is taking a nap and I'm, once again, "puffy and swollen." My knee is hurting again. I started some of my supplement regimine today. I still have to get Samento, Magnesium, an Anti-oxidant, and a B-complex. Today has just been spent relaxing and being lazy. I did get to the gym for a VERY slow walk and some weight lifting. . .hope the swelling in my knee goes down before Monday.

Monday, November 14, 2005
puffy and swollen . . . Current mood: frustrated
I guess frustrated is the best description tonight. To go along with my pal, michael,'s self rating system. . .tonight I am a 3 (0 the worst and 10 best). My left knee is very puffy, hot and swollen.
I have been tired and cranky since last week--with the swelling really starting on Saturday. I have had difficulty walking today and I am taking off of work tomorrow so that I can be rested enough for wednesday (with, hopefully, minimal swelling).

Stupid, stupid lyme disease. Glad that I'm seeing the rheumatoid specialist next month. I hope I can get a referral to a lyme specialist.

Old Lyme support group posts. . . . .

Posted: Mar 31, 2005 9:01 PM

Hi Guys. I'm Rachael and I wanted to share my Lyme's story too. I used to teach riding lessons at a camp in Madison wi. One summer, I got very sick towards the end of camp and had a large unexplainable rash on my stomache. I didn't think anything of it as the days grew on. . I just thought I had a cold or something. This was about 7 years ago. Fastforward one year. . .I have unexplainable swelling in my left knee. We're talking huge swelling here. I get x-rays, I get MRI's, I see orthapedic doctors. . . nothing shows up anywhere. Finally a dr asks me about lymes and then proceeds to prescribe only two weeks worth of antibiotic. . .all seems well after this. I return to college. I begin to get sick again. More knee swelling, flu-like symptoms, fatigue. . . I go back to the doctor. The first thing he asks me is if I think I'm pregnant!!!! I was sooo pissed. Anyway he runs another lymes test and tells me it's negative and that this is all in my head. I knew my body and I knew that this was not in my head. I went that whole year with lots of leg swelling and being sick all the time. Fast forward one more year. . . .I was really sick that whole school year--lots of fatigue, missing classes, lots of leg swelling. Finally my roommate takes a reluctant me to the emergency room because my leg is so swollen I cannot remove my pants. I ended up getting 100 cc of fluid removed from my knee and getting a lyme test that comes up positive. I get put on a month of antibiotics and still continue to have swelling and fatigue. Finally I get prescribed Rocephen, IV antibiotic. I went to the hospital every day for three weeks and had antibiotics pumped into me for an hour. I'm told that I should be fine after this. A year later, I have unusually swelling again and go through another round of x-rays and MRI's with the doctors insisting that there is no way I should test anywhere remotely positive for lyme with the amount of antibiotics that I have had. . .but low and behold I did. I was put on another month of antibiotics and have not had too many problems since. I am still tired alot, but I am trying hard to combat that with exercise and diet. I do have some occassional knee swelling, but not enough that I am willing to go back to the doctor. Any way--I wanted to share my story. Good luck to both of you!

Converstation between a friend and I
Posted: Sep 23, 2005 8:38 PM

I had to reply to you! I have chronic lymes too. . it doesn't sound that like I have had the magnitude of issues that you have had. . .mine is ONLY centered around my left knee--which swells to the point of not being able to bend my leg and walk. I am VERY active--which I think has really helped. I am going to see a rheumatoid specialist in a few weeks. . . .hopefully he will have some ideas for me.

Posted: Sep 25, 2005 3:36 AM

Have you continued therapy for the Lyme? Has it been difficult to get the proper diagnosis and get the support you needed to keep active?-- Mike

Posted: Sep 25, 2005 1:15 PM

I have not continued anitbiotic use because I was told that antibiotics are not helpful at this point. I am currently seeking the help of a rheumatoid specialist.

Posted: Sep 25, 2005 7:22 PM

Was it a Lyme specialist who suggested you end the treatment? -- Mike

Posted: Sep 26, 2005 7:34 PM

No. My last dr. has been a orthopedic surgeon. As I have said--I don't have quite the extent of chronic issues that you are having. . . I have flare ups maybe 1 or 2x a year for about a month at a time and that is about it. I am hoping the rheumatoid specialist will have some ideas and if not, perhaps a referral to a lyme's specialist near my state. Although the incidence is increasing dr's aren't particularly educated about LYME here. Most likely the rheumatoid specialist will provide me with a referal (I hope) to see a lyme specialist. . . .we'll see!


Rachie-Babe said...

okay well. I am so sorry for that rant!

Ms. Mamma said...

Ugh! Do NOT apologize, that is supposed to be totally awful. I just think the doctors around here are all quacks, sorry. There are just too many Dr's who have graduated from foreign medical schools. I hope you find some answers and some relief!

Rachie-Babe said...

Thanks! I was having a very swollen knee day and I just felt frustrated. . . . .

healthy-one said...

hello - i found this blog thru a google. i am in the middle of all of your stories. four weeks ago, i went to my chiropractor/kenesiologist with a hot, swollen leg. i also felt crummy and feverish at night, but my partner said that i did not have a fever. my chiro decided it was a muscle tear. the electric stimulation treatment really helped reduce the swelling and stiffness. a week later the swelling was concentrated in my knee and i felt really pale and lethargic. i went to a chinese herbalist/accupuncturist who gave me herbs that immediately made me feel better (color back in my face) and accupuncture for a 'torn ligament'. then after continued pain and swelling in the knee, i went to an ortho surgeon who hasn't figured it out yet. mri and x-ray rule out anything structural. the reumatoid arthritis and lymes tests aren't back yet. a freaked out when i read the medical web site about reumatiod arthritis. i really don't want that!! also, i don't look forward to weeks of antibiotics for lymes, but prefer it to a chronic disease. two summers ago i was diagnosed with rocky mountain spotted fever after a hike in the rockies and took anti-biotics for a month. maybe this is a relapse?

Rachie-Babe said...

Healthy one--

Thanks for stopping by! I'm sorry you're having the troubles you are. I can sympathize with dr.'s not quite knowing what's wrong. My dr.'s do not believe what's happening has anything to do with Lyme. I'm not sure what I believe. All I know is that I'm 28 years old and have times where I can't walk. That is NOT how my life is supposed to look! I'm in the process of meeting with a new dr. so I can get a second opinion!

Anonymous said...

My son was 3-4 yrs. old when he got sick,(fevers, chills, nausea, rashes, headaches, ear infections,knee pain, tiredness, etc.) For months we visited the pediatrician, even changing pediatricians, and finally getting a lyme disease test done that came back positive.He did a month of antibiotics, semed better for many months and then began to get sick again. Had another lyme test done, negative result, as were the next 10 over a 5 yr period.By this time he was very ill with many of the symptoms I mentioned earlier plus more including heart murmur, enlarged spleen, bone, muscle and immune system situations,severe asthma spending many weeks in the hospital in oxgen tents, breathing treatments & oral steroids when he did not respond to the nebulizer that we kept with us always.Positive test and treatment of long term antibiotics were done with a doctor belonging to the Lyme Diseaese Assoc. of N. J. which gave him his life back.For the first time since he was 3-4 yrs. old he played ball games and normal childhood stuff. This is 3 yrs. later and he is having knee problems ,, I pray it has nothing to do with Lyme.

Anonymous said...

I've been told that I have Ricketssia Mooseri, but I don't know if I also might have lyme. My knees have been swollen for 4 months now, the left one more intense. Can't bend them, it feels like everything inside is tearing apart when I bend. Did that accidentally the one day when I wanted to pick something up, and it was the most terrified pain ever. Are you still struggling with your knee?

Anonymous said...

hi,i have been having my knee drained of alot of liquid sice 7 years, every month, then a shot of cordizone follows. i know i cant go on like this. i have joint pain everywhere, but not all the time, the dr said im a rare case, as was diagnosed with ra 16 years ago, but have no ra factor in my blood, or any damage to my joints. i guess this is good, but i know theres something wrong with me, that the doctors just cant see, well they dont really care i guess! im so happy i found this site, to understand there are people out there with the same problem! its not normal i think to have my knees drained every month? i cant continue to take cordizone shots like i have been? im 32 years old! any feed back would be very helpful! thank u! francesca from switzerland

Rachie-Babe said...

Hello! For those asking Lyme's questions--I have had less and less issues with my knee. For me, stress seems to be a trigger, so the more I manage my stress, the more likely I am to be symptom free. I do not test positive for Lyme anymore however, I've been told by some that doesn't always mean that I'm Lyme free.