posted
Lymnets...when you first became ill, how many on here was so ill that they couldnt get out of bed, and sleep all day for 2 years straight,
this is what happened to me when i was hit with my illness, all lyme victim, were this what happened you too.
if this was not your issue i need to understand what and rule out lyme, i do not want it to be lyme and if you did not stay in bed for 2 years straight, then we are dealing with 2 different cause of our situation,
i do not know what my illness is, i will continue to see the llmd dr.,and hope its not lyme i really im praying cause, i DO NOT WANT THIS DIEASE.
ANY THOUGHTS of ANYONE COMING DOWN BEING BEDRIDDEN FOR 2 YEARS STRAIGHT LIKE I DID.
ANY FEED BACK I WILL APPRECITE SO I CAN TRY AND RULE OUT LYME. WHAT HAPPEN TO YOU WHEN YOU GOT SICK..
WERE YOU ABLE TO SIT, OR WERE YOU JUST SLEEPING ALL DAY EVERY DAY, HOW MANY PEOPLE ON HERE HAS CFS, EBV, HHV6, HSV1, MYOBACTRIUM, IF HALF OF YOU DONT HAVE NONE OF THESE, MAYBE I'M NOT ON THE RIGHT BOARD.
CAUSE OF THE PEOPLE ON HERE SOME PM ME ASKING ME WHAT IS CMV...THEY DONT KNOW WHAT SOME OF THESE VIRUES THAT I HAVE ARE.
I JUST SEND A FRIEND THAT WAS BORN IN HAITI MY PRAYER FOR HIM AND HIS ENTIRE FAMILY.
TOUGH OVER IN HAITI RIGHT NOW. ITS LAte.. i just took my sleepy pill, so im a litte off, i made an appt for another endoscopy, i have to keep a check on my stomach ulcer, since i had a pholyp remove in july of last year.. i hope all goes well in that department.
i received the humaworn today havent started that yet. but everyone CAN you please tell me how you felt after getting ill, that would guild me in a direction of lyme or no lyme. i dont want that depressing stuff.
good nite/good morning, and god bless.. this will help me greatly, if no one has cfs, hhv6, hvs1, cmv, mycobactrium because these are what come back in my old bloodwork.
posted
Ok, I've been bedridden with unknown Lyme, and so have a lot of others here as well.
I also got some healthcare along the way and was able to get out of bed and function again, even tho I didn't know I had Lyme.
Nothing's fixed in stone. Our health situation can change, especially with treatment changes.
People can be bedridden by many things. There may not be any single organism we're dealing with. We might really be dealing with a bunch. I think you posted early on here about testing positive for a list of organisms?
My feeling is rather than make any definitive decisions at this point, to keep an open mind about all of it and learn. This can be a huge learning experience if you approach it that way.
If you do indeed have Lyme, then you are going to need to treat it too. That's why I say not to rule it out at this point.
Lots of things are depressing in life. But maybe it's also a matter of point of view. As long as we're still alive to try, that's a step up from not being here.
I mean, look at what Haiti's going through right now. Hundreds of thousands have probably lost their lives. You're at least still here to work on it all.
But this is not easy stuff. So just try to learn about it all before you think you get to rule something out.
Here's another possible approach: Instead of thinking of Lyme as depressing, what about finding out more about how people successfully treat it? What about reading the success stories here? Maybe that would cheer you up a little? And they're real stories too.
Did you know we have some very active posters here who are doing better, feeling better, and are here helping others? That's a pretty positive thing, don't you think, that they were able to get better?
They had to study what to try and then try it.
I thought you're in with a doctor's office now. So they should be helping you take the steps to look at what you're going through. Is that happening? Are they helping you with your next steps?
I can't remember whether you've had the bloodtests done for Lyme yet? Have you?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Robin gave you some good advice. Yes, I was pretty much bedridden for about 1 1/2 years. I was finally diagnosed with CFS and Fibromyalgia.
There is no test for CFS so I knew it was a guess. I now know it was lyme that was causing my fatigue, ect. I was misdiagnosed for 15 years and have been in treatment for 5 years now.
I am so much better than I was. It used to make me tired to just walk across the floor. I'm past all that now even though some days I still have great fatigue.
I didn't want lyme either but was glad to have finally found what had been wrong with me all those years. At least it can be treated. It's a long hard road for sure.
If you have positive lyme tests just stick with your LLMD and treatment. You will see improvement but it takes time and patience.
Even if you don't have positive tests and your LLMD thinks you have lyme you probably do. It could be the cause of your CFS. So many of us here had the CFS diagnosis but it was lyme.
Hang in there. You can get better.
Sapphire
Posts: 495 | From KY USA | Registered: Dec 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Street..I am not a dr. Just a mom that was baptised by fire..
My daughter has tick borne diseases and mold, genetic issues, mild brain damage and coincidentally developed type I diabetes at the same time..Also has many psych issues and HHV-6, etc.
Thru this journey, we have learned a lot and read about neuro toxins. You could figure out more perhaps if you read some old posts on this. The body reacts in somewhat the same way with any toxin. So it may not always be Lyme, it might be another neuro toxin, such as mold or heavy metals...or it could be a combination of many things, including lyme and co infecions..
But as one wise psycholigist once told us, keep searching to rule out any biological reason before accepting any psychiatric cause for any of the symptoms.
Good luck...this is war in Hell. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
thanks for all feedback, i have not done my bloodwork by igenex yet, i was on a month of doxy...he want me to come back in 5 weeks for the blood drawn, it is taken so long to get her.
2/8 is my set date for that. isnt it two weeks, you should wait to get doxy out of your system before you draw blood. i will call igenex and find out and if they tell me 2 weeks im changing the date to 2/1
cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I wasn't bedridden because I REFUSED to be bedridden. I was couchridden for 2 yrs.
I made myself get out of bed, after pain meds I would take a shower or detox bath and then be exhausted and back to the couch.
This was after I had done abx for over 2 yrs, kept working and pushing myself, determined this illness was not going to conquer me......
One day my Lord pushed me back down into the bed and my life changed. He must of been okay with me and the couch though, because he let me get to it daily.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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