Had early disseminated Lyme. Treated 4.5 months, off ABX for 11 months now.
I've been experiencing air hunger, extreme sleepiness, occasional muscle cramps or pain, some occasional elbow and knee cap pain. Was off meds for Hypothyroid for 6 weeks. Started Thyroid support from health food store. No change, air hunger increases. Have had sleep apnea a few years, the kind that feels like something in your throat and you wake up. Not treated.
Got back on Levothyroxine again. Still air hunger.
Started Candida Clear, (Caprylic acid, Pau D'Arco, black walnut, oriegano oil)thought maybe was yeast. Can't really tell a difference. Holding off on that one now, too, in case I'm allergic to something in it. I also take allergy shots weekly.
PATTERNS
Air hunger: Usually starts in A.M. Stops, then late in day. Sleepiness: starts about 1-3 hours after waking in A.M. Sporadic throughout day. Joints: Off and on, tendonitis, elbows. Knee caps feel weird, but I've had poor feet all my life that causes issues when I change shoes, could be that.
So who the heck knows? I've got so many other things it could be. Frustrating. Have a doc appt with gyn on Nov.15 for regular pap. Going to address the thyroid first, candida issue. I plan to request the CD-57 and if gyn won't do it, I know a doc who will. To top it all off, I'm still pre-menopausal!!
Seems like I have so many other factors that it COULD be. Oh, well. AT least I know what to do and where to go, even without insurance. If it hadn't been for Lymenet, I'd never known what to do over a year ago. Any input is appreciated.
Posted by BoxerMom (Member # 25251) on :
In me, these would be Babesia symptoms.
I also have sleep apnea, related to my Babesia. If you could get on CPAP, some of the fatigue would lift.
But please don't think all these symptoms are from sleep apnea. Do a round of Babesia meds to see if you herx.
Posted by Garbagedump (Member # 26546) on :
Boxer Mom: What is CPAP?
I've had this sleep thing for several years, way before the lyme bug. What would be a round of Babesia meds? I'd prefer treating with natural remedies due to the fact no insurance. Can you suggest natural for Babesia? I could do Salt-C.
Posted by lymie tony z (Member # 5130) on :
You're somewhat confusing some issues.....
So how did you feel while on thyroid meds?
How do you know you had these problems before
lymebug? Were you tested for TBD.s?
I have very similar symptoms and as yet no clear
cut test positive for Babs....however I suspect
I've always been positive for it...
A CPAP is a breathing device for people who are
tested for and postively manifest sleep apnea/
which are sleep disturbances brought on due to
the mind waking up the body due to lack of
oxygen.
This is typically associated with lyme,babs and
the ensueing PTSD due to chronic ailments where
the "flee-flight" innate activity of the brains
probable prehistoric abilities wakes one up
whenever one would be suffocating.
I doubt very seriously if there are any altern-
ative remedies available for the complete
resolution of babesiosa infection. However,
I'm sure someone will recommend and IMHO waste
your time with some concoction or "super-pill"
sorry you have no insurance....
in this day and age even those with pre-existing
conditions are "supposed" to be able to get
health insurance.
Your symptoms arriving before "prevening" hours
are I don't believe consistant with the usual
4pm "sundowners syndrome" usually associated
with MS or symptomologically MS induced TBD's
of spirochetes/coinfections.
So I guess I would need more knowledge of your
particular drugs-aleviation or not of symptoms.
However not being a doctor myself....of course
I could ultimately only give my opinion and
that then would be to consult with the new
tests offered by that outfit in Sharonville
Pennsylvania as to what species of TBD you may
be infected with.....given the little I know
of you or your history.
Sounds though you're fishing around for some
explanation of all your manifestations....
hope this helps somewhat, zman
Posted by 17hens (Member # 23747) on :
Babesia
Posted by Garbagedump (Member # 26546) on :
lymie tony: When I was on thyroid meds I felt fine. The air hunger was only just beginning maybe once in a blue moon. Then off thyroid med for 3-4 wks. Now back on for 1 week, air hunger seems more. It's strange how I can go about daily routine, work out, take care of a sick horse & it doesn't really bother me. In fact, after workout yesterday, I was revived.
Right now, I have the air hunger. But when I lay down, I don't feel it. I still feel like I can go back to bed, but can't cause I have to go to work Weirdest thing I ever saw.
I don't know what TBD's is. I was never tested for Babs because LLMD did not believe I had it, I was negative for Lyme anyway, but we know that's not accurate. He said if I had Babs I'd have more symptoms, like night sweats. I never get night sweats and I'm trying to go through menopause!!!
I was thinking Candida. Also,I read a couple of articles that said air hunger happens with hypothyroidism in some people, as well as the sleepiness. I'm just hoping that's all it is.
Thanks for giving some input on this. It helps to share the information and I like to have suggestions from others.
Posted by James1979 (Member # 31926) on :
JSYK, any time you change thyroid meds your hormones can be messed up for a few weeks. It just takes a few weeks for the body to stabilize after changing the thyroid meds. That includes starting, stopping, or changing dosages.
Posted by Garbagedump (Member # 26546) on :
James1079: Really? I didn't know that there would be a change when changing or stopping. Have you ever heard of the air hunger associated with it before? I read this article: http://www.drlowe.com/jcl/comentry/breathingproblems.htm It sounded so much like what I was going through. Then I stopping then restarted my thyroid meds which probably whacked me. I hope that's all it is. I bet I have crashed my system. It's weird though that this air hunger thing intensified after starting back on Levothyroxine.
Oh well, I'll keep fighting.
Posted by Razzle (Member # 30398) on :
Anemia can cause air hunger and fatigue. Have you had a blood test recently?
Sleep apnea is a likely contributor to your fatigue. CPAP is s machine that essentially forces oxygen into your body while you sleep so that you don't have the constant awakening from suffocating. And if Lyme/coinfections is the cause of the sleep apnea, then treating that would be helpful also.
Bart. can cause foot pain, but so can Lyme.
The elbow and knee pain sound very much like Lyme to me...
I'm not a doctor, so please consult with a health care provider before making any changes.
Posted by WPinVA (Member # 33581) on :
You can get Arteminisin without a prescription. Google it on Amazon. It's for Babesia.
Posted by nefferdun (Member # 20157) on :
It sounds like babesia. Do you have extreme fatigue, breathlessness when you exert yourself, headaches, hot flashes?
It is hard to get rid of - best get on it before it takes over.
Posted by Garbagedump (Member # 26546) on :
nefferdun: No, I do not have extreme fatigue or breathlessness when I exert myself. No hot flashes, no headaches. I work out 3 times a week, low impact cardio combined with strength training.
Update: I am going to an MD here in my community on Monday. The good thing is that he is open about Lyme and, in the past, has agreed to treat someone and consult with an LLMD out of state. All I've heard is "...he is so nice and open.." I think a family member had Lyme. He's seen Under Our Skin and was given Dr. B's protocol, but I don't know if he's implemented it.
He agreed to take me on as a patient. I didn't have a primary care doc, only a gyn, so this is good. I'm going to request the CD57 from CPL. This doc has used Igenex labs, too. If anything, I'll update him on my local group so he can send us new people.
Posted by James1979 (Member # 31926) on :
quote:Originally posted by Garbagedump: James1079: Really? I didn't know that there would be a change when changing or stopping. Have you ever heard of the air hunger associated with it before? I read this article: http://www.drlowe.com/jcl/comentry/breathingproblems.htm It sounded so much like what I was going through. Then I stopping then restarted my thyroid meds which probably whacked me. I hope that's all it is. I bet I have crashed my system. It's weird though that this air hunger thing intensified after starting back on Levothyroxine.
Oh well, I'll keep fighting.
Sorry I didn't respond earlier. I'm positive I read about this in a book, but I forgot which book it was. The doctor even gave examples, like how when a patient is told to stop all thyroid meds, usually they feel great for a few weeks, but then they crash like crazy.
I'm not positive about what exactly happens, and I forgot all of the details, but I'm sure that the book was saying that it takes a few weeks for the body to adjust after adjusting thyroid meds.
Best wishes.
Posted by Garbagedump (Member # 26546) on :
James: Whoa! My sister told me the same thing. I noticed my air hunger was not as bad today, but I was fairly busy, too, so it doesn't impact me so bad. I just feel really sleepy.
Do you thing that 7 hours sleep is enough? I've been getting that much, 7-8 hrs per night with, occasionally, maybe 6 hrs. Feels almost like a herx! I'm keeping a positive attitude and will go ahead with the CD-57 test just to be sure.
Posted by James1979 (Member # 31926) on :
About the sleep - I think it's different for everyone. I think most people need 7-8 hours every night. But some people can get by with 6-7. Also it depends on your age, activity level, metabolism, etc...
Also remember - the times you sleep are also important to consider. For example, being asleep in the middle of the night might be much more beneficial and rejuvinating than sleeping in until 10AM.