My 22 yr old daughter is the one with the Lyme soup Dx (6 years ago, Igenex positive lyme, clinical bart and babs). She was Dx late, did 1 year oral abx, then 8 mo of IV abx, followed by a many months more of orals. The Dr said she was in remission!
However, I have two questions:
Since the remission dx is mainly a clinical dx, am I correct in thinking she is still in remission since overall she has not gotten worse?
And could she just be stuck in a depleted, run down state and need a health makeover? Or is this what her future looks like since she has been basically stuck for 3 years?
She has not wanted to do much to help herself, because she feels so bad. Her diet has improved some, but she could eat healthier and cut out sweet drinks! Sometimes she can't eat, she is nauseous all the time too. Actually I am thankful she's not as bad as she was on IV abx, she had to be on TPN! The only exercise she gets is walking up stairs. I have bought her supplements suggested by llmd and Burascano, but she would not follow thru.
No days are good, just some are better than others! Right now she is mainly concerned with pain management, and treating the symptoms of what she is left with.
Since lyme dx she has been dx with chronic intractible daily migraine, or 24/7 headaches; insomnia; gastroparesis; polycystic ovaries; possible endometriosis; neurogenic bladder; fibromyalgia; autonomic neuropathy; and is supposed to have a muscle biopsy for mitochondrial disease. She has other Dx's too, but some are actually caused by these like her orthostatic hypotension is caused by her autonomic neuropathy, and is worse if she's dehydrated due to gastroparesis. She has been tested for several dozen other possibilities.
My daughter is always sick with something. Last month she spent 4 days in the hospital with acute bronchitis. I took her to the ER with trouble breathing and they took her back immediately because her HR was 160. After they got her breathing better, her HR dropped to 100, but her blood pressure was 55/34 and wouldn't come up enough so they admitted her. It was supposed to be for one night, but her congestion was so bad they were trying hard to keep it from becoming pneumonia (and they succeeded). I didn't notice a Herx from all the IV abx they gave her in the hospital and sent her home with, guess that's a good sign! Also I let the Dr give her IV steroids in the hospital because her breathing was so bad. I know they are bad for lyme, and I suspect her immune system is suppressed, even if it tests normal, and would not be good to take in her case. What's the lesser of two evils?
All of her Dr's but her pain management Dr are upset by the amount of pain meds she takes daily and for breakthru pain. Yes some may be addictive, but her quality of life was horrible before. Again what's the lesser of two evils? She is not stuck in bed in pain all the time, or knocked out to get some relief, or begging me to take her to the ER only to sit 12 hours to get meds that don't do much to the pain! It would be nice if she didn't have to take them! Can I hold out hope that one day it will get better?
She seems to catch everything, and it takes twice as long to get over it! However tests of her immune system are in the "normal" range. We never know if she is really sick anyway because she "runs" fevers all the time. Autonomic neuropathy effects your ability to regulate your body temperature. I hate the not knowing... is it an infection, is it lyme, is it just her wacked up nervous system?!
She still has undiagnosed severe abdominal pain, two Dr's thought spleen was enlarged, referred to ID doc who said scan showed it was not, and took about a gallon of blood and ran every test known to IDSA! Of course they all came back normal! Refered to another Dr for x-ray of ribs, clear! And on, and on, and on... Still don't have appt with GI motility specialist scheduled and she's called three times!
OBGYN said she would do exploratory surgery if no other Dr found anything. Also my daughter had to have her pap smear repeated three times because of the results! And repeat it again in 6 months!
If she's in remission, why is it she's going to more Dr appts now?
Sorry I got carried away! Guess I shouldn't have stayed away from the boards so long!
Posts: 242 | From Mississippi | Registered: Oct 2006
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momindeep
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Why, exactly did her doctor think your daughter was in remission?
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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sixgoofykids
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It really doesn't sound like she's in remission. I'm in remission and I'm fully functional, leading a normal life.
I was sick for a very long time and was bedridden/housebound.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sutherngrl
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Sent you a PM!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Dave6002
Frequent Contributor (1K+ posts)
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I agree she's not in remission. I'm not in remission either, but I am much better than her. The doctors said she's in remission probably because they don't know how to deal with her problem.
Posts: 1078 | From Fairland | Registered: Apr 2006
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lymeboy
Unregistered
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you need a new LLMD. Your daughter sounds very sick. She could have multiple things wrong with her. But she isn't in remission. She could have parasites, along with Lyme and coinfections. Please find a LLMD in your area.
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i know its hard to get into the "fighting" mode when she feels that sick, but attitude has a lot to do with getting healthy again. I don't blame her for not wanting to follow through on supplements, no one wants to take a bunch of pills a day. it blows, and some days... i rebel and refuse to take any. but those pain pills she is taking are doing a number on her liver.
when i was 22 i had been sick for 3 years, popping 4 vicoden...in one sitting... around twice a day, so I could make it through 10 hour work/school days.
I'm 27 now, and have been dx and in tx for 1 year. She isn't done treating yet. I hope she can motivate herself to find a way to better health. She is lucky to have you.
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