Since joint pain in elbows/knees is my only symptom left, I went to see the Orthopedic doc today. I'm releived to find out that I have no permanent damage to my elbows & the knot on my shin is NOT rheumatoid arthritis. In fact, he saw no reason to even run an RA test!
He had been to a testing seminar that had a whole section on Lyme & joint problems. He knows it's not curable in 4 weeks & also knew that steroids would be bad for me due to reducing immune system. I actually believe this doc had an open mind.
He also said that some patients end up seeing him first when they experience joint problems to later findout it's Lyme. I liked his attitude. Anyhow, he prescribed me Mobic for anti-inflammatory & I'm concerned about the side affects.
I'm also taking Lexapro & there is an interaction warning with this drug. I just don't like what I'm reading about the possible risks. I may just use the arm brace he recommends & go back on Wobenzym (natural) but it's so expensive I don't know if I can afford it every month.
So what's your take on Mobic?
Posted by Lymetoo (Member # 743) on :
I don't know anything about Mobic. Sorry. I think all the prescription NSAIDS carry risks.
As for the knot on your shin. I have that too. I think it is definitely related to Lyme. (usually long-standing lyme) It's been discussed here before.
Sounds like the dr is pretty smart!
Rutozym is a cheaper version of Wobenzyme. You can get it at Vitacost.
Could also add in curcumin.
Posted by kidsgotlyme (Member # 23691) on :
I would go with something natural. Those NSAIDS scare the crap out of me.
Posted by jklynd (Member # 7550) on :
You may want to ask your Dr. about prescribing Voltaren gel- It is an NSAID, but in topical form.The idea is you apply it strictly where the pain is- because it never gets into your GI tract,those possible GI side-effects are not a concern anymore...
You do have to "meter" the dose-the Mfg does provide little paper strips for that purpose. A foot Dr. prescribed it for me when I believed I had plantar fasciitis- turned out it wasn't,but the gel helped that problem immensely.
Here's a link to a recent NY Times article regarding it---It's been on the market about 2 years now...
I have a knot on my shin too. Didn't realize it was a lyme symptom. Sheesh.
Posted by bcaring (Member # 9157) on :
I have been under LLMD care since 2003. I was told in 1995 that I had FMS and CFS when specialists could not figure out why I suddenly could not work out, function, etc. Changed my career goals, my life, everything. Fast forward with a lot of pain in between and eventually LLMD's put me on IV and orals.
It is 2010 and I am still taking a cocktail of oral antibiotics. A contributing factor is that I have been re-bitten several times with one tick testing positive for RMSF - fortunately I was covered since I was on Doryx. I always have two dogs who even though treated with Frontline are repeatedly bitten by ticks (small female escaped and came home and dropped at least 500 teeny tiny nymphs on a blanket. I freaked. I am now sorry I didn't send the blanket to our local health department.
Re testing over since 2003: Lyme, co-infections, mycoplasma, cpn, Epstein Barr, HHV-6, levels were extremely high - off the charts. Positive at one time for Babesia and Bartonella. I was put on IV for 4 months in 2004, then 3 months in 2005. I continued to relapse and go down hill. During this time they did an MRI (lesions) and a SPECT (hypo-perfusion in parietal, temporal, and occipital lobes). After treatment the hypo-perfusion improved greatly. I have not repeated the tests because I see no point in subjecting my brain. I have had so many tests. I know that my mind is better and at least I don't stutter any more. In fact, I think I am sharper than most people I know (by the way, I live in a hyper-endemic area in south eastern PA so I think many are infected.)
In 2008 I was on multiple IV drugs for 11 months and the insurance company paid for every thing - not even a peep from them! They paid for Bicillin injections and orals for years. It has been a long very very difficult battle, but I do function better than I was and many people think I am very normal (you all now that scenario) since they do not live with me (ha!). They also are not really interested in knowing anything.
RE; joint problems. I have always had difficulty getting up and moving from a sitting position. I am always in bad shape after 6pm. Last spring my knees began to really hurt. Took 4 months to get the orthopedic doc to do an MRI, and that was only done after fluid started to appear on the left side of knee. The fluid was aspirated and tested for Lyme but it was done by a rheumatologist who is not Lyme literate and did not chose the appropriate labs.
This month both knees were operated on and the Ortho doc found tears all around the knee cap and bone on bone in some places. I think the repairs will help significantly and the pain I was experiencing both around the knee, in the femur and below the knee in the calf - has subsided. The pain was about a 9. Next we will inject lubrication in the knees to keep them going until knee replacement is required (hope that will be a long while).
Several months before the surgeries I started Minocycline, Doryx, and Tindamax (1st time on a cyst buster). As to why both knees fell apart ( age 59 so some wear and tear) at the same time and did the Lyme contribute to the deterioration - yes I believe it most definitely did! How to prove it I don't know.
I did attend the Columbia Lyme Conference in Philadelphia in early October and it was most interesting, especially Dr. Breitschwardtz (sp?) from North Carolina and his studies on Bartonella. He blew me away. It is going to be big - and people have no clue - and I doubt our government or physicians will make an effort to educate. Lone star tick is moving rapidly northeast and is extremely virilent. It is of great concern to the military.
also watched the one day of the IlADS conference and believe I will order NT FACTOR. I also need to start a liver and parasite detox.
You all continue the good fight. I am watching the retrovirus info closely. I believe it will be significant. It reminds you of the AIDS research in the beginning. When you see and hear some of these passionate and brilliant physicians it makes you feel hopeful - so much more than even 5 years ago.
I will always have to deal with the problems caused by this illness but hopefully we will make advances in detection, treatment, and education.
Take care and thank you for all your knowledge. Beth
Posted by lymeinhell (Member # 4622) on :
The shin 'knot' is Vitamin D deficiency. I had it for years, and it disappeared when I started taking D3 and got my levels in the 50's.
Beth - thank you for sharing your story. I wish you well.
Posted by bashibazouks (Member # 28286) on :
LymeNet is opening my eyes more and more every day. I've had the shin knots for years and never thought they were a symptom of ANYTHING! I'm amazed. Thanks for sharing!
quote:Originally posted by lymeinhell: The shin 'knot' is Vitamin D deficiency. I had it for years, and it disappeared when I started taking D3 and got my levels in the 50's.
Beth - thank you for sharing your story. I wish you well.
Posted by sammy (Member # 13952) on :
I took Mobic for several months (before Lyme). Injured my foot/ankle back when I was in school. Because of my clinical requirements and my full time job at the nursing home I was unable to rest my foot like I needed to. Took longer to heal but it eventually did. I couldn't have made it through the day without that RX NSAID.
If you want to know something really cool God healed my foot and ankle the summer after it was injured. I went on volunteer mission trip to Costa Rica, wasn't sure how I was going to do all the expected walking but really felt like I needed and wanted to go. I didn't want to back out because of pain. Well, I made it to Costa Rica and discovered that I left my RX at home! God provided for me, I had little to no pain during our 10 day trip of almost continuous walking/hiking. I also had less pain when I returned home and was better able to continue physical therapy to fully regain my range of motion and strength.
I know that is more than you wanted to know but it still makes me happy to think about that experience so I thought that I'd share it with you all.
Posted by arkiehinny (Member # 26546) on :
Lymetoo: So many others have posted about the knot on the shin! We all know it's related to our infection. Mine was NOT arthritis.
kidsgotlyme:I'm considering going off the Mobic. It scares me too.....
jklynd:Thanks for the link!
apljack: I know it's from the Lyme...the knot. It's gotta be, look how many others have posted about it.
Lymeinhell: Ya know, about the vitamin D deficiency...I've been taking it for over a year, even before infection. I know my B12 level was good, but I don't know if I was tested for D. Wonder if I should increase? I'm taking a good dose..2,000 IU.
bashibazouks: I see we have knots in common1
sammy: Wow, awesome testimony!!! Amen, sister!
Posted by arkiehinny (Member # 26546) on :
bcaring: Thank you for sharing your story. Each time I read another narrative, it makes me more determined to stay in the fight!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by apljack: I have a knot on my shin too. Didn't realize it was a lyme symptom. Sheesh. [/QB]
Below the knee-cap, right?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lymeinhell: The shin 'knot' is Vitamin D deficiency. I had it for years, and it disappeared when I started taking D3 and got my levels in the 50's.
You know what? I never heard that before... but I've been supplementing with D3 for more than a year now and when I checked just now, my knot is MUCH better than it used to be! I never noticed!!
Posted by arkiehinny (Member # 26546) on :
My shin knot it below the knee cap........below the connector at the very top of the tibia bone. It doesn't hurt, though.
I'm going to check out Rutozym. like you suggested.
Posted by Lymetoo (Member # 743) on :
Hope it works for you!! Posted by Misfit (Member # 26270) on :
This is what I mean by my having learned so much from this site alone. I have a knot on my shin as well...been there for YEARS. It didn't bother me, and didn't bother my doctor, so I didn't give it much thought.
I'm supplementing with D3 but wondering now if it' enough. I'm at 2,000iu a day. Sometimes a little more.
I'm going to increase and see what happens to that lump!
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