posted
After all that has been going on lately, I thought I'd post a little update for anyone that's interested.
Some of you may know I haven't been able to walk on my own for almost two years. This whole ordeal started about two years ago with elbow and shoulder pain. My doctors diagnosed me with Lyme Disease and I was put on antibiotics. This helped my elbow and shoulder pain, but then I started having trouble with my knees. They continued different treatments to no avail. Recent x-rays and MRIs of both knees show very little cartilage left. My only option now is total joint replacement.
The doctors aren't 100% sure what caused my knees to deteriorate so quickly, but suspect it has a lot to do with my weakened immune system. Because my immune system is so weak I've been receiving monthly IVIg infusions for the past two years. I will most likely have to continue this long (~5 hours) and expensive (~$4500) treatment for the rest of my life. Thank goodness for insurance!
Because of my weakened immune system and the possibility of infection, the surgeon will only do one knee at a time. Because my right knee is worse (only by a margin), I'm having it replaced on April 17. I'm not sure on recovery time, but I'm hoping by June/July I'll have the other knee replaced and maybe by September/October I'll be 100% again, but I'll settle for a strong 75%!
After not being able to walk without either a cane, or a walker, the thought of being able to walk with my wife and kids again is almost something I can't comprehend and describe. While I can't say I'm glad this happened, it did help me to appreciate the simple things in life that I used to take for granted. I tried, sometimes not very successfully, (ask my wife) to use this as a learning experience. What did it teach me?
It has also taught me how to accept and sometimes ask for the help of friends and strangers. This was a tough one. I've always tried to help others when I could; be it financially through special collections at church, to hands on help like fixing cars for those less mechanically inclined. Since I can no longer do a lot of things myself, I've had to rely on the help of friends, family and even strangers.
As a Christian, I wish I could say this was the best thing that ever happened to me, but I can't. I can't begin to count the times I've literally cursed God. But, looking back I can also see the little things He has done to bring me up out of the pit I was in. Is my faith stronger because of this? I really don't know. I do know it hasn't been lost and I guess that's all that matters.
As a photographer, it has taught me to look at my surroundings differently. Not being able to get around and get to the ``money shots'', I had to get creative, sometimes shooting from inside my car.
The last and most important thing I've learned and hope to pass on to others is this: Please don't take anything for granted.
Thanks for listening...
-------------------- -Mike Posts: 96 | From Atwater, Ca | Registered: Nov 2004
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posted
Nice to hear from you, mike, and we will be thinking about you during your joint replacements. Maybe after then we'll get to see another pic or two that you have taken of some great place.
IVIG forever????? Maybe at some point your immune system will come back. Hope so.
Posts: 8430 | From Not available | Registered: Oct 2000
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Mike, I was so glad to read your post today and to get an update. I've wondered often how you're doing.
Your post made me cry. I thought of the toll this disease takes on all of us and our families, and of the courage and grace most of us show in the face of it... I definitely find that in your post, Mike, and always have!
It sounds as if the next few months could be challenging, but as you said, the possibility of you being able to walk back into the wilds with your family makes it all worth it. I know how much you've missed that, and I have no doubt you'll come through it all beautifully.
I also appreciated what you wrote about the lessons this has given you, and I could relate to so many of the things you said. Especially the part about learning to accept; that's been an especially hard thing for me, too.
I love having your voice on the boards, Mike, and, like Lou, I hope you'll post more of your pictures. You take good care, Mike; know I'm here cheering for you and your family and holding onto the image of you taking everyone for a good, long hike!
Andie
[ 27. January 2006, 12:03 AM: Message edited by: Andie333 ]
Posts: 2549 | From never never land | Registered: May 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Thank you, Mike. I bet the last thing you want to be called is "an inspiration," so I will just say I was really moved by your post. I wish you all the best with your replacements. Most people I know really do well and I hope you will too. A big hug, Ann - OH
posted
Thank you everybody for your encouraging words!
An inspiration? I've heard it from others. I guess if I can inspire someone, then this was all worth it. I'm just trying to do what I have to do to keep my head above water!
I'll keep posting some of my pictures when I get a chance.
Thanks again!
-------------------- -Mike Posts: 96 | From Atwater, Ca | Registered: Nov 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Howdy Neighbor!
Why didnt you mention all this grey stuff when I was planning to move to the valley? I am not sure how you guys make it through the winters here. Livin and learning.
Good to hear from you but Not such good news. Maybe a light at the end of the tunnel? I know lotsa folks with hip and knee replacements and most are doing MUCH better now.
I really hope this will be your story too!
It is hard to find much meaning in being sick from a tick. It pretty much just plain sux. get it?
silly me.
take good care, try to rest lots both before and after surgery. Take it slowly. Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi Mike~
I'm a hiker too...or at least used to be. Did LOTS of backpacking in the Grand canyon.
Then hurt my knee...then a steroid shot to the knee activated latent lyme in my body. Knee surgery shortly thereafter that included IV vancomcyin gave me a huge herx reaction.
Orthopedic doctor didn't know what was going on with me...didn't understand that the steroid shot activated the lyme, or that vanco gave me a herx.
And he was a kind enough guy...very sympathetic to my falling apart. We even joked about how he caused my problems, for I started to fall apart shortly after seeing him.
Then he moved, and I found out that I had lyme disease...and that he had activated it. (Also gave Trails a steroid shot too, causing her problems).
Well, I wrote him a kind letter and sent lots of articles on lyme disease...and, sadly, I never heard back from him.
I was hoping, that since we were friends, and he had affected both Trails and I that he would take Lyme disease seriously and take the word about Lyme disease to the orthopedic community. I guess that isn't going to happen.
All this is to say, is your orthopedic doctor understanding about lyme and how it has affected you?? Is your lyme better now, and it is just your joints that are the issue?
Is your orthopedic doctor telling others about lyme disease?
And, do you like your orthopedic doctor? For, if I ever get well from lyme, I am fairly certain that I will still need to see an orthopedic doctor, and I want someone who can understand the HELL I've been through with this disease....and will help me get back as much as I can physically. I would like to be able to sweat again. Hiking would be a delight. Backpacking or skiing may never happen, but I want a doctor who will do everything he can to help me.
Is your doctor that kind of guy? If so, who is he and where is he located?
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I've been going to Stanford. The Rheumatology clinic diagnosed me with Lyme two years ago, even though I tested negative. My only symptoms were shoulder and elbow pain. After about 6 months of both daily IV and eventually only oral antibiodics, that pain has left for good. All I have now is knee pain. I'm thinking I had Lyme and don't anymore and my knee is something different or I never had Lyme to begin with. I'm pretty sure I had it because after I went through treatment my fever and upper joint pain has left for good.
I'm 100% comfortable with my doctor, the current diagnosis and method of treatment.
-------------------- -Mike Posts: 96 | From Atwater, Ca | Registered: Nov 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
So...to clarify...your orthopedic doctor is at Stanford? If you wouldn't mind PM me with his name, I'll keep it if I ever get rid of the lyme...Thanks
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Sounds like your knees are pretty far gone, so maybe this does not apply, but I found glucosamine to make a definite difference in joint pain. And the difference is dose related.
If you are already taking it, just ignore me.
I do not usually recommend supplements or alt meds, but some of them do seem to be useful, and glucosamine is one, in my opinion. Not saying this will prevent the joint replacement business, but might make the days more tolerable until then.
P.S. I have also done some hiking and rafting in the Grand Canyon, but not since LD.
Posts: 8430 | From Not available | Registered: Oct 2000
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Lou, been taking Glucosomine (Joint Essentials) through Dr. Whitaker. Almost two months on it and I have no noticeable improvement.
-------------------- -Mike Posts: 96 | From Atwater, Ca | Registered: Nov 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Mike, maybe I should clarify---I am the one who moved to TURLOCK this past summer. sorry if it confused you, we wrote a few times on the sonoma board, Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi, Hikin' Mike.
What a story. Good luck with those knees -- hope you can get out there behind the lens very soon again. I just had a look at your gallery -- wow! very lovely shots! Keep up the fight!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
This disease teaches us a lot of things. It pushes us to our limits. With good friends, doctors and these great forums, hopefully we can find our way past the lyme.
posted
Just had my surgery re-scheduled for February 24!!
-------------------- -Mike Posts: 96 | From Atwater, Ca | Registered: Nov 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
LD is a very humbling disease, isn't it? I wish you all the very best of health.
Hmmm. My ex-husband's name is Mike and he's getting married on the 24th.
Connection? Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I dont if you have heard of this stuff or not? But before I had joints replaced I would try it at the same time I would take Glucosamine . Glucosamine
SYNVISC� is an FDA-approved therapy that provides lubrication for your knee. It also acts as a "shock absorber" to cushion your knee joint.
SYNVISC is an elastic and viscous fluid that is made from a substance called hyaluronan that is found in normal joint fluid. Hyaluronan acts as a "shock absorber" and lubricant in your knee joint and is needed for your joint to work properly. SYNVISC is indicated for the treatment of pain in osteoarthritis (OA) of the knee in patients who have failed to respond adequately to conservative nonpharmacologic therapy, and simple analgesics
Anyway I hope it works out for you Mike.And God help you get through this safely .
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Mike just be careful. I'm glad you have IVIG. Try to google and find Jane Brody's NY Times articles on her knee replacements and how much pain she was in for a long time afterward. If I recall correctly she had to be on the strongest narcotics possible. It is not such an easy surgery even for a healthy individual. I know there are not a lot of options but you might want to thoroughly know in advance all the potential problems that can occur.
Posts: 2276 | From united states | Registered: Jun 2004
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