Swelling and joint pain????

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masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 10/22/2008 2:39 PM (GMT -7)   
Does anyone have any ideas to reduce swelling in the ankle? 5th day of IV Rocephin for my husband, he can not stand and put weight on his foot for several days now. The ankle is swollen and painful, stabbing pain. There is also some redness (inflammation). We have done epson salt soaks with peroxide but nothing seems to help. I am assuming he is herxing from this new drug. Previously on orals, Flagyl and Zith for 90 days. We have tried heat, ice and LED infrared. He needs to get up a little and get some movement. He has been bed bound for at least a week now. Last week it was the other foot and ankle. Any input would be aprreciated.

trytocancel
Regular Member


Date Joined Aug 2007
Total Posts : 263
   Posted 10/22/2008 6:14 PM (GMT -7)   
I've been there. Desperately NEEDING the movement and exercise, but one week my right knee wouldnt let me, then the left would start as soon as the left got better, then my left foot&ankle would go. And it was never just plain old "painful" it was totally impossible to weight bear through these joints, no way to work around it. I still dont know what someone is supposed to during this time. NOW, I cut back on my meds when I herx bc I can't afford anymore down time or any loss of strength, so I take days off or reduce to the dose so that I can get around. I don't know if this is the "right" or "best" way to do it, but something my naturopath encourages, and what I need to do so I dont lose too much ground or my mind altogether. But my recovery IS slow. Good luck, I wish I had some great answer. I always iced, but now I never do bc after 2 years of icing, it got old :) Take care and I will pray for some relief!

<FONT color=blue>*no dx until 6/2007- clinical dx at llmd with a mildly positive bart test

hypermobility syndrome</i> dx, finally one western blot that no one knew how to read, and a nice round of prednisone to finish me off
June-August...Ceftin
August - October ....Roecefin IV, 9.5 weeks
October - worse than ever, bedridden, new LLMD pulled IV
October - March 21...biaxin & plaquenil, (worked a miracle),climbed step first time in 14mos
Jan - March 21...tetracycline (on and off 4 times bc hard to tolerate)

March 21 - April 19....stopped all prescription drugs, best month yet

July & August: DIFLUCAN...more improvement

September: Zithro + Mepron


masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 10/22/2008 7:12 PM (GMT -7)   
lita31, Thanks for your reply. My husband said you hit it on the head. It is not just painful but impossible to bear weight on the ankle. We will talk to the doctor about it. Maybe there is no solution other than as you suggest. Our prayers are with all of you also. Bev

trytocancel
Regular Member


Date Joined Aug 2007
Total Posts : 263
   Posted 10/23/2008 8:15 AM (GMT -7)   
I think you have to have experience it, to know the severity of it. It feels as if you have an injury...I still continue to think I actually hurt or injured something in my body 2 years later. My friends would say can't you just grunt your way up the stairs even though your knees are painful, but there was no way in h*ll I could climb the stairs with those knees. I just recently started NEURONTIN.... and it is the first time anything has helped the pain. My shoulders have been affected lately and they can flare so bad that I cant use my arms, but the neurontin is really helping me right now I think. THe pain gets triggered by ridiculous things, but it calms MUCH faster. Maybe this is an option for your husband too??

<FONT color=blue>*no dx until 6/2007- clinical dx at llmd with a mildly positive bart test

hypermobility syndrome</i> dx, finally one western blot that no one knew how to read, and a nice round of prednisone to finish me off
June-August...Ceftin
August - October ....Roecefin IV, 9.5 weeks
October - worse than ever, bedridden, new LLMD pulled IV
October - March 21...biaxin & plaquenil, (worked a miracle),climbed step first time in 14mos
Jan - March 21...tetracycline (on and off 4 times bc hard to tolerate)

March 21 - April 19....stopped all prescription drugs, best month yet

July & August: DIFLUCAN...more improvement

September: Zithro + Mepron


masonsmom
Regular Member


Date Joined May 2008
Total Posts : 84
   Posted 10/24/2008 7:18 AM (GMT -7)   
lita31, I googled Neurontin and I am assuming it is something I need to ask the doctor to prescribe? I will mention it to him. Ed also has the problem in his shoulder and knee. The shoulder restricts movement of his arm. This caused a problem when his pic line was put in. Did you have any co-infections besides bart? You have helped us a lot by your reply. My husband can relate to your symptoms completely. The doctor keeps saying no matter how painful it is you have to keep moving, but some days it is impossible. I don't know if our age hinders us more? He is 66 yrs old. Healthy as an ox before lyme. In forty years he took an antibiotic many twice. This disease stinks. We made it through my breast cancer six years ago and moved on but this disease seems never ending.Thanks, Bev

trytocancel
Regular Member


Date Joined Aug 2007
Total Posts : 263
   Posted 10/24/2008 9:04 AM (GMT -7)   
Neurontin is prescription, and it is specifically for neuropathic pain or nerve pain....which is the most excruciating kind of pain that there is, and fortunately most never have to experience it, so it can be hard to relate to. This may help keep him moving a little more. I was prescribed it a year ago, but just finally surrendered to taking it 3xs a day.... I have seen 3 of the top LLMDs and despite negative blood tests, they believe I am infected with multiple co-infections based on symptoms. I will say that for me, things got a lot worse with treatment before ANYTHING got better. And they were worse for months, but then a turn around. Biaxin and plaquenil made a huge difference for me, as I believe the plaquenil helps with the joint pain on its own bc its prescribed for rheumatoid arthritis. I was 27 when this started and a year ago at this time I could not hold a sandwhich, care for myself at all, climb a single step, was stuck in the room next to the garage for EIGHT months, with people bringing me food and water, and getting in the shower and trying to get my socks and shoes on was the hardest and worst parts of the day. And although I still deal with pain every day and my limitations, here I am a year later, going up and down flights of stairs, cooking for myself and my husband, and have most of my independence back. But had zero improvement for4-5 months, mostly just worsening, and functioning less and less. My mom is reading Cure Unknown, and as soon as I feel I can deal with more reading and research on the subject, I will too. But the more I learn, when this disease is severe, severl months or even a year is not long when treating this disease. It really took a couple of years for most of the people who got back to 100%. This disease has a lot more unique challenges than many other diseases, which make it soooo incredibly difficult! You beat your cancer and your husband will beat this! You must be very strong people! Keep me posted and hang in there!

<FONT color=blue>*no dx until 6/2007- clinical dx at llmd with a mildly positive bart test

hypermobility syndrome</i> dx, finally one western blot that no one knew how to read, and a nice round of prednisone to finish me off
June-August...Ceftin
August - October ....Roecefin IV, 9.5 weeks
October - worse than ever, bedridden, new LLMD pulled IV
October - March 21...biaxin & plaquenil, (worked a miracle),climbed step first time in 14mos
Jan - March 21...tetracycline (on and off 4 times bc hard to tolerate)

March 21 - April 19....stopped all prescription drugs, best month yet

July & August: DIFLUCAN...more improvement

September: Zithro + Mepron FOR 5 Days! Wanted to die on it, so back to diflucan for now

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