posted
Hi, I took the advice suggested about fatigue and my regular doc has ordered as series of blood work and suggested CFS as a diagnosis. So I guess she still hasn't watched the copy of UOS I gave her.
My question is if the thryroid, adrenals, hemoglobin, vit D all come back normal I'm not sure what my next move should be?
I can't do the Lyme protocol I was given it just is not and option I become completely disabled on treatment not able to work or live properly. The only thing it did help with was the fatigue in every other way I was so much worse off.
A woman that I work with was just diagnosed with lyme and they have her on doxycycline and she says she has never felt so good! Her fatigue is completely gone. So that got be thinking I wonder if I just did a low dose doxy if it would control the fatigue?
Has anyone tried this? I wonder if my LLMD would agree to it. It's all so frustrating and confusing I never know which direction to go in. A five year annoying battle with no definitive answers. I've done so much reasearch and still my head spins from it all!
Any ideas or suggestions are greatly appreciated!
Ann
-------------------- If you keep doing nothing...nothing changes!
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I have been treating for 16 months. Started aggressive, then went to moderate treatment. Could barely handle it and did not see much improvement at all.
I have now been on low dose doxy for a little over 2 months and I am starting to see actual improvement. Its nothing drastic, but its more than what I saw the whole first year of treatment.
I had profound fatigue, actually I named it the "death fatigue". I have seen a little improvement in it in just a couple of months on the low dose doxy.
I would say it is worth a try!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
lakes592,
I am curious what you were on before that made the fatigue better, but made so many other symptoms come out?
I think the low dose doxy is worth a try.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Thanks for the quick responses I have been overwhlemed today so I really appreciate it! I was on 1500 mg biaxin 400 mg plaquenil. I was wide awake to the point of insomina but so sick that I couldn't get out of bed. Wide awake and in pain is no fun...lol
-------------------- If you keep doing nothing...nothing changes!
posted
Forgot to add that the low dose doxy may be an option. Just wondering if Dr. D would go for it as I'm doubting my regular doc would give me the script for it. She said she was going to do some research and she'd get back to me by Tuesday.
I said a prayer as I left the office that she would watch the UOS copy I gave her. That may be a good or bad thing it will either prompt her to help me or scare the crap out of her...Her partner "had Lyme" so I am suprised she hasn't watched it yet.
I guess I could try talking to Dr. D but I feel like once he gets his mind set on a certain treatment protocol it is a once size fits all scenrio. Five years ago when I was first diagnosed it was the everyone on Doxy treatment so it probably would have been easier to sway him back then...
-------------------- If you keep doing nothing...nothing changes!
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
How long did this go on for (with the Biaxin/Plaqeunil worsening your symptoms)? Maybe it would have improved with time, if that was a herx. Sometimes it can be good to just push through that stuff.....but you know your body better than anyone.
Or maybe you could have reduced the dosages. I took much less plaquenil, because it was all my body could handle.
The Doxy is worth a shot too though.
Do you think the lack of fatigue on Biaxin/Plaq was a side effect, or it meant that the meds were actually doing what they are supposed to do?
Because if it's the second, this combo may be worth looking into again if the Doxy doesn't help you. I would think the fact that you were responding in such a profound way to that combo must mean something. Maybe you could just try lower dosages of both drugs next time.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Hi, Yes, I tried lowering the dose and just taking it at night. It causes all over achiness, weird stomach pains with extreme hunger. Always felt like I was starving and if I didn't eat immediately I would feel like i was going to pass out. Couldn't work or do anything with my kids was really unbearable. So I definetly have to find an alternative.
I will wait for my blood test results to see if it is any underlying problem then go from there.
-------------------- If you keep doing nothing...nothing changes!
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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