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Come off abx and now headaches & insomnia

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Posted 6/4/2015 9:48 PM (GMT 0)
So, I stopped taking abx about 10 days ago . . . I'd been on various abx for 18 months, apart from a two month break in the new year when I did some herbals instead . . . most recently, I've been on rifampicin and minocycline to address possible Bart. For the first week after I stopped, I seemed ok, no huge change, if anything, felt slightly brighter, slightly less dizzy. But then this last weekend, I began having a headache, and it hasn't really gone away . . . twice I've had to take headache pills at around 5-6am, and it never totally goes away, I feel sure that it's starting in my neck and radiating upwards. My head feels almost tight and sore, and if I turn it too quickly, it hurts :-(. Also, I seem to be waking most nights around 3am and then struggling to get back to sleep. I gave up & got up at 5.30 a couple of mornings ago. I really need my sleep, so this is no good :-(.

So, do you think this is something bad starting up again because I've come off the abx? Is this what happens if you still have an infection? :-(. I must say that there's a chance that it could be premenstrual headache, as I am about two weeks overdue (menopause approaching!) so that could be contributing. But it's a strange kind of headache really, and definitely coming with a stiff neck :-(

Any thoughts? :-/
Posted 6/4/2015 10:05 PM (GMT 0)
Did you ever use an antibiotic or herb to treat the cyst form of borrelia? Minocycline and rifampin do not treat the cyst form.
Posted 6/4/2015 10:08 PM (GMT 0)
I think so . . . I've been on ceftiaxone, cefuroxime, doxycycline, clarithromycin, clarithromycin plus amoxicillin plus tinidazole . . . Then herbals, then rifampicin and minocycline
Posted 6/4/2015 11:30 PM (GMT 0)
The tinidazole is effective for the cyst form of borellia.

Flossie - did you stop abx because you were symptom free and were ending treatment?
Are these symptoms that you previously had with lyme/bart..or are they new to you? (the headaches, and early morning waking)

And, did you continue with lyme/bart herbs after stopping abx?

If it doesn't let up in a few days...and you've ruled out your period...you might need to address the infection - whether it's abx or herbs.
Posted 6/5/2015 11:10 AM (GMT 0)
Hi girlie - yes, I thought tinidazole was a cyst buster - I felt I made some progress on that one actually but was only on it for two months (or was it 3?)

Anyway, I think my doc stopped my abx treatment to a) give my body a rest, as I've been on them for over 18 months, and b) to see how I responded to coming off them - ie if I got better or worse or neither. She wants to review this after a month off abx.

I wasn't symptom free, but I'm beginning to wonder (and maybe my doc is too) if the wooziness/dizziness/tingly feeling in my head, plus still slight weirdness in my leg and some minor numbness/tingliness in feet & hands, are all residual nerve damage and I will just have to learn to live with it :-(. I'm on several supplements to help with support and repair of neurological stuff but don't know how much they can do :-(

Currently sitting here with a hot water bottle on my neck . . . Feels really stiff and this strange headache radiating from my neck, right over the top of my head. It's not a horrible, painful, thumping, migraine-type headache that I've suffered from before, just all feels a bit stiff and sore :-(. Wish my period would start, then I could discount that a possible cause :-( . . .
Posted 6/5/2015 1:25 PM (GMT 0)
I have an appt next wk & one of (main questions is to address herx vs buggers/treatment losing effectiveness & needing a change-up--the dilemma so many of us seem to face). The radiating up from neck thing & the numbness/tingling to me signal you may need further treatment (?). Such craziness~we all face! Wishing you well :)
Posted 6/5/2015 1:40 PM (GMT 0)
You're not really supposed to stop treatment until you're symptom free, but some of that could be nerve damage. Make sure you tell your Dr you're feeling worse now.

"are all residual nerve damage and I will just have to learn to live with it :-(. "

Nerve damage can be healed! It's not something you will live with forever. If you are healed of the infection, your nerves should heal.
Posted 6/5/2015 2:12 PM (GMT 0)
Thank you happyjo and sarah. It really is so hard :-(. I am concerned that it seems to be this stiff, sore neck, and head pain radiating from that, plus insomnia . . . does sound awfully lyme-like :-(. It's hard to understand how anything could still be living in my body after 18 months of abx though!! I really don't understand how that can be right sometimes :-(

Sarah - can nerve damage really heal? :-/. Can it heal even in the brain? That's what scares me :-(. I really want to believe that it can heal and that one day I will feel 'normal' again . . . thanks so much for the encouragement xx
Posted 6/5/2015 3:39 PM (GMT 0)
I'm not a doctor but I believe so! Check out these links:


http://www.lyme-symptoms.com/LymeDiseaseInfo/LymeRecovery.html


http://www.tiredoflyme.com/nerve-damage.html

 

Posted 6/5/2015 4:22 PM (GMT 0)
I don't like the "just have to live with it bit" & I just do not understand all of the neuropathy/nerve/infection interpretations.

I do know that when first beginning abx, the drugs immediately effected the neuropathy. With herxes & treatment, it surges, but not as horrid as before. confused

I don't know if you tried, but I have recently re-added Lion's Mane to my regimen. So many shrooms are beneficial & curative. And I love the funny name & the visual (It is totally goofy on my part, but seriously does make me smile each time I take it, as I conjure up the this mane/poodle looking fungi!). :-)

And of course, there is literature to support taking it! Buhner also recommends.

Really cool pix & info here:
http://www.huffingtonpost.com/paul-stamets/mushroom-memory_b_1725583.html

Several studies seem to support:
http://www.ncbi.nlm.nih.gov/pubmed/23510212
Dr Weil re Lion's Mane & nerve damage: http://www.drweil.com/drw/u/QAA400081/Lions-Mane-Mushrooms-for-Nerve-Damage.html
Posted 6/5/2015 8:46 PM (GMT 0)
Thanks so much sarah for those links :-). Lots of encouraging info there, I really appreciate your posts :-)

Happyjo, maybe I just have to be patient - when I asked my doc a few months ago if the dizziness etc would ever go, she seemed quite certain that it would, so I should really hold on to that I suppose. It's just so hard not to have doubts . . . The lions mane thing sounds interesting, and as I'm writing this, I'm thinking I have a feeling I've come across it before . . . :-/ . . . it's not coriolus or Hericium is it?? I've taken both those supplements and one of them at least is def derived from some kind of fungus, and I remember looking at the funny shaped one which I'm pretty sure was called lions mane or something . . . I'm going to go and check! Anyway, I will read up about it and see what it can do for me. I'm actually back on the coriolus now, but have stopped the Hericium . . . Seriously, taking all these supplements gets soooo confusing . . . Thanks again for your help :-) xx
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