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How do I determine what is lyme or not?

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Posted 10/6/2014 9:29 PM (GMT -5)
How do I determine what are lyme symptoms or not? At almost 6 months into treatment m only symptom at the moment s clogged ears. It is different than my original clogged ears I had when I firt had lyme. That was stronger and would move from ear to ear and had some ear wax.
This is milder and in both ears at the same time and gets worse or better throughout the day. I have only had this round of clogged ears about 10 days so far. ALso this one feels more connected to a very mildly sore throat and the other one felt independednt of the throat. Also this one can go away for hours at a time and then reappear.
I stil have the tinnitus I have had for 6 months.

Basically, since my doctor seems to think I am doing much better and since other than this ear thing I am doing a lot better, I am trying to determine if this clogged ear thing still means I have lyme or not.

I never had any ear issues before lyme. So it may be that things are just inflamed and the lyme plus the lots of strong medications I am still on just caused this ear clogging feeling. The ears are slightly sore and somewhat clogged.
But I didn't have this ear clogged feeling after it went away a few weeks into treatment. It is just recent.
o it is making me concerned as I try to feel into if I feel better or ot, that I have this. It is so random because I have been on a lot of strong medications for almost 6 months. So it is confusing to me to think that if the ear pressure is still lyme, that things would be this active at 6 months into still ongoing treatment.

How do I figure out if this is still lyme or not? I had thought my recent infectolab blood test would let me know for sure if I am still ill or not- but because the #'s were higher but my doctor said it is mostl likely memory cells and I am most likely getting better, I am just confused about if my ears clogged like this necessarily means I am still ill with lyme or not.
Posted 10/6/2014 10:31 PM (GMT -5)
Hi Kate, I might have a possible natural remedy for you that may help...could you tell me has babesia been one of your co-infections that you been treated for with lyme? (Would like to rule this out)

Also, when you say clogged...I have always referred to it as 'head pressure'. Does it feel like a fullness in your head with the pressure like air pushing to come out of your ears? (also makes your head feel kind of the brain fog/spacey thing?)


-Courtney
Posted 10/7/2014 7:33 AM (GMT -5)
hi

No, it felt more like that in the beginning- more pressure. Now it just feels like achy deep inner ears. It sucks and is continuing today. It is SO frustrating after treating for almost 6 months- to still have this symptom. It actually hurts and really concerns me and makes me sad. I was treated for babesia and in my most recent test babesia and bartonella came back negative.

I mentioned the ear thing to my doctor at the last appointment and he just said it may or may not be from lyme, lets just keep treating and see what happens kind of thing.

Even if I called him again to discuss it I am not sure what more he can say about it.

It doesn't feel like head pressure- just like achy inner ears that are clogged.

So I don't know if it is still active lyme, or if it is my body reacting to 6 months of antibiotics, or if it is some other problem. I just feel so frustrated of course because most of my other symptom are finally gone and instead of being able to relax and enjoy health, I just ache in my inner ears and worry about what it is and will it go away etcetera.

 

Posted 10/7/2014 7:45 AM (GMT -5)
Maybe it will go away once you stop the abx? How much longer is your treatment?,
Posted 10/7/2014 7:53 AM (GMT -5)
my treatment is about three more weeks. I took two days off this weekend and still and the ear pressure- though some days it is worse or better- it is bad today. Just scares me to wonder what these long term antibiotics might be doing to my body and systems. I know it is much much better than what lyme untreated would do to my body and I am grateful to have an llmd who is helping me. But I am also scared about my health in general. I do look forward to being fully off the antibiotics soon and seeing if things ease up. It is just scary to me to have this ear pain and pressure.
Posted 10/7/2014 9:46 AM (GMT -5)
KB,

You have come so far! It's great to read that most of your symptoms are gone. I'm sure it is extremely frustrating that the ear problem persists. After reading hundreds of posts on multiple forums in the past few weeks, it seems common for some symptoms to stick around at the end of treatment, but then gradually go away over time. It seems like your response to therapy was great! Most of your symptoms are gone! Hopefully this ear issue clears up soon. I have my fingers crossed for ya!
Xoxoxo
Posted 10/7/2014 9:59 AM (GMT -5)
Thanks, utahgal. Did you get my email by the way?

thanks for the encouragement and you are right. I do feel so lucky to be as much better as I am and I know I have to continue to be patient. So after I dropped my child off at school I came home and typed the above post, then I went and took a nap ( I am way overdue for a nap and my young child is only in school part time so my chances to nap are few!) and I woke up and my ears feel about 50% better- as I said it comes and goes. I still have not taken my medications for the day- I will be so happy if and when I can stop the medications for good at some point and stay healthy.

Posted 10/7/2014 10:06 AM (GMT -5)
I think one of the main things I am experiencing is that lyme is so tricky and confusing. NOw even a few moments later I am feeling more unwell- and because I went 7 months with lyme not evn being sure if I had it- and I am very self aware- I am now just contstantly wondering if every ill feeling I have, every bit of anxiety, every ear ache, everything is still the lyme. It is hard to move forward and trust and feel safe in my health because this thing has been so traumatic. Also when it is up to me to determine my symptoms and my doctor is very symptom based ( which I think is okay due to lyme- as I have said mnay times I think my doctor is good and definitely knows WAY more than I do about treating lyme- which is not true for all llmds) but because it is so up to me to determine my symptoms, I am constantly analyzing my feelings. Like I felt good when I woke up from my nap- for about 15 minutes- now I feel fatigued again- so now I worry again. It is a tough thing.I feel possibly "fluey" though on a small scale so that scares me too. such a mess.
Posted 10/7/2014 12:16 PM (GMT -5)
I did not receive an email from you.
Posted 10/9/2014 8:57 PM (GMT -5)
Hi Kate, I can imagine how frustrating it must be to be almost *there* but with such an annoying symptom lingering!

What comes to mind for me would be yeast/candida. Literally no joke, 9/10 for me when I get a fullness/head pressure feeling...I have come to realize it is from overgrowth of candida! The reason I asked about babesia is because a friend of mine who has lyme/co's, swore his head pressure is from babesia...and I would oppose that is was from candida! Turns out, it can be from either.

Whenever I do get this, my personal remedy is raw garlic. It works like a charm for "clearing my head". Kinda weird even how it works. I usually take one clove and cut it up in lil pieces and put on toast w/butter and drink with LOTS of water. I also sometimes take a very tiny piece and put under my tongue for about 10secs so it absorbed in bloodstream that way. Idk if you have any experience with raw garlic but it can be harsh on your stomach if take too much. I cant really do more than 1 lil clove from a bulb in one day (but have heard of some people handling more!). A couple times I have had bad burning in stomach and milk ended up helping that.

All in all, this may help or it may not. If it does...then AWESOME. If not, then its only like a $1 spent! I always only give advice from personal experience and do not just pass things on that I picked up randomly on the net.

If anything, I think you can use it as a personal *test* to see if candida or not. If you eat it, and after you eat it-your head feels better...then its candida/yeast that is your problem I would say and you will have to go hard & heavy on lots of anti-candida things get everything back on track from all the abx. The raw garlic helps, but will not be a sole cure if you have systemic candida in body.

I have a feeling your complete health is just around the corner though ;-)

Please let me know if you try the garlic and if helps by chance...


xx's-Courtney
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