posted
I am a caregiver to a wonderful wife of 14 years who was diagnosed 3.5 years ago with Chronic Lyme. We were VERY lucky to find Dr. G in VA who, after seeing a couple of different doctors that diagnosed it being "all in her head", finally gave us a diagnosis.
We've been through 3 picc lines and finally have a central port for the IV antibiotics when we find out that Dr. G is being forced to close by the State. So, what do we do now???
Learning about Lyme has been an experiance to say the least, and now I'm almost afraid to publicly seek help because of the stigma associated with Lyme doctors! I guess I could have been much more proactive in seeking support before this crisis, but we thought it was all under control since my wife has been recieving treatment.
She can hardly get out of bed a lot of days, and is in constant pain despite being on medications. She's recieved 2 different IV antibiotics but there is NO end in sight. I haven't been able to work for 2 years because she needs constant care and when she falls, she can't get up by herself most of the time. We've lost everything to this disease. Our home, 2 cars, our income, and we are barely scrapping by.
Now that our Doc on the Eastern Shore is being forced to close we are in a state of panic. We're searching for another Doc, but the ones that we have found either are 3+ hours away or don't take any insurance or both.
Is our story so different from others? I have no idea, but I'm glad I found this forum.
Thanks.
Posts: 4 | From Quinby, VA | Registered: Sep 2010
| IP: Logged |
posted
I have to drive three states away to get to the nearest LLMD. I would love to find one only 3 or 4 hours away.
Mine doesn't take insurance either. But the largest cost is the travel and hotels, and all the supplements and food I need that wouldn't be covered by insurance anyway. This illness is soon going to ruin me financially even though I am still working full time while sick. I have a good job and an excellent insurance plan, but neither is doing its job of protecting me financially from the impact of a chronic illness.
I'm sorry for everything you're going through. Your wife is lucky to have you there to support and take care of her. Not every Lyme patient has support from their families. Apart from that, your story is all too common.
I do hope you can find another LLMD. If you post in "Seeking a Doctor," you can get referrals. You may have gotten them and checked them out already, with the disappointing results you mention.
I don't know how any of us are supposed to get over this disease without either starting out wealthy, or bankrupting ourselves and our families. And I'm not even on expensive treatment like IV's.
Still, we all have to do the best we can and keep trying. Giving up is the only thing guaranteed not to help.
Good luck to you, and I'm glad you at least found this place where you can get support and answers to your questions.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You're not a whiner at all but I'm too tired to explain how else to look at this.
Is your story so different from others? Not at all.
I hope others will have energy enough to post encouragement.
Hold on. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Welcome!! Did you post in Seeking a Doctor here to get a list of names?
Yes, you may have to travel. That is really hard on a very ill person, but it must be done.
I hope you can find someone to help you!!
Your wife is lucky to have you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi EasternShore, your wife's situation sounds so much like me. I've been sick 7.5 years and when I was in the third year of treatment, I was very much like your wife.
I have a wonderful husband who has been by my side through it all.
When we were treating at that point, we were really focused on getting rid of Lyme disease (borrelia infection) and used picc lines.
Come to find out, my main problems were two co-infections also transmitted by ticks - babesiosis and bartonellosis. These two diseases require different therapies than Lyme disease does.
I've ended up with a "pulsing" regimen. I treat all three diseases but only one at a time. For instance, I treat babesiosis one week, Lyme the next, babesiosis again, and then bartonellosis. If one of the diseases feels like it's getting the upper hand, I'll switch the weeks around.
I've found this works very well for me and I'm much better now than I've been since before I was stricken.
I'm still not "well" and probably never will be. I relapse quite quickly without the medications. But I certainly have far more quality of life than I did when we were just pursuing Lyme alone.
I was bedridden and needed a commode or bedpan for a long time. I got Meals on Wheels for awhile. My husband went to work each day and left me alone. He would rush home if I needed him.
We have 3 children, one severely disabled. We had to send our children to daycare and respite care. They are in school now. It was and is a very difficult time for all of us.
The good news - I can walk again. This is miraculous because I was so weak I could barely move. So, there is hope. Hang in there and consider the co-infections as being a big part of your wife's problems.
My thoughts and prayers are with you - Julie
PS - Unfortunately, we have to pay out-of-pocket for our Lyme doctor and he is two states away from us. But, that wonderful man has improved my life so, so much that it's worth it. I have been fortunate enough to find a primary care doctor who believes there is such a thing as chronic Lyme. It took a lot of abuse and pain from the "mainstream" to get to where I am today. It CAN work out - don't give up!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic