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Off abx - stiff neck, headache - flaring again? :-(

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Posted 6/11/2015 12:29 PM (GMT 0)
Came off abx about 3 weeks ago, and for the last 10-11 days, I have had a stiff neck, leading to a slight headache kind of across the top of my head. Not a big, thumping, migraine type headache, but just always there. If I tip my head forwards, it hurts - almost feels like it's pulling a muscle in my head, if you see what I mean :-/. Also, last weekend I was very irritable and tearful, feeling that people hated me - I very rashly unfriended someone on facebook in a huge over reaction to something they posted on one of my posts :-/ . . . I've only just plucked up courage to do facebook, just a few weeks ago, maybe I'm still too fragile for it :-(.

I've been in treatment for over 18 months, the vast majority of that time, I have been on various abx. I went on herbals for a couple of months in the new year, to have a break from the abx, with no change either way really, then went onto rifampicin and minocycline to address possible Bart.

My doc took me off these abx more or less to see how I reacted. Do you think this is the infection flaring up again? Or toxins coming out that need to work their way out?

Any thoughts welcome . . . Thanks xx
Posted 6/11/2015 12:55 PM (GMT 0)
ONE of the first signs for me was a stiff neck & painful (left esp) neck lymph node. Like mono, I would think a stiff neck might signal that you might need to continue treatment to finish knocking it out. The emotional could be a sign, too :/

Funny, as I just got back on FB yesterday--happy to catch up, slightly envious of all the blather, but still feeling like the person in the wings. rolleyes

Hope you feel better, Flossie. I have to believe you will get there! xx
Posted 6/11/2015 1:13 PM (GMT 0)
I think you may be right :-(. It's kind of up both sides of my neck, right up to just behind my ear. And then this strange, slight, almost jarring headache (in that sometimes as I move my head, or if I walk, it will hurt for a few seconds, almost like I've jarred it :-/)

I think I posted about this last week, & was hoping it might have just been a temporary thing, but it just isn't improving :-(. Plus the emotional stuff . . . I don't want to go down that heavily depressed route again :-( . . . I've really been feeling brighter the last few months, and now feel I'm sliding backwards . . . :-(

Thanks so much for your support happyjo - I'm rooting for you too! xx
Posted 6/11/2015 1:26 PM (GMT 0)
Stiff neck was one of my first symptoms also, I think I would stay in treatment, if it's chronic lyme especially.
Posted 6/11/2015 1:40 PM (GMT 0)
Thanks revive. Although I didn't realise it at the time, I think it may have been an early symptom for me too. I remember going to the doctor several years ago - way before I got so, so sick - because I had this strange headache across the top of my head, plus stiff neck, which I actually think was the same kind of thing that I have now. I do suffer with headaches, and have done for years, but this isn't like that - it's not the normal, thumping, migraine headache. Anyway, back then, my GP, predictably, diagnosed me (within 30 seconds) with a pulled muscle in my neck & sent me on my way, advising physio which, by the time I got an appointment, was too late as it had already resolved by itself. I don't remember having this stiff neck and associated headache since that time, although I had a huge increase in the migraine type headaches before I became so ill. So maybe it's coming out again? :-/
Posted 6/11/2015 6:04 PM (GMT 0)
If I were you I would get right back on antibiotics immediately!  If you wait much longer you could actually lose progress and all the gains you have got with your treatment.

What is happening is the germs are coming out of hiding, and resuming normal metabolism once again.  it's the perfect time to hit them.

The Dr. B pulse is actually stopping all abx... Waiting 3 weeks off abx, and then immediately resuming abx for 6 weeks.  Then 3 weeks off, then abx for 6 weeks.  Each time letting the disease come back and allowing germs to resume their metabolism which is of course the best time to hit them with abx. 

You are now at the time when hitting the germs hard and restarting the abx will actually give you some major progress but if you wait much longer you will actually be losing progress. 

The abx work best when the germs have their metabolism active .... slamming them with abx actually causes them to stop their metabolism and go dormant in order to protect themselves.  So with them now active again, you can hit the ones that are left pretty hard.   You may just need to go back on the abx for a few weeks, then you can take another break.  But you will likely herx again!  So make sure to be ready for that. 

Posted 6/11/2015 6:09 PM (GMT 0)
So you definitely think that's what it sounds like is happening lymepickle? :-/. It's so disheartening - after 18 months on abx, how can anything still be living in me?! :-(. But you think that's what it sounds like? If so, maybe I will contact my lyme doc tomorrow . . . the plan was for me to be reviewed after a month off abx, but maybe I should do so earlier then? What abx should I be looking at do you think? Or doesn't it really matter at this stage? :-/. Thanks, I really appreciate your help xx
Posted 6/11/2015 6:23 PM (GMT 0)
The very best antibiotic to use at this point in time that will hammer the lyme germs the best is ceftin or cefuroxime. That will be powerful. I think you could probably get by with just 1... It is in the cure unknown... Only 1 antibiotic is needed. If you feel like using 2... Biaxin is the next best pick.

There is a new study that was just published last month where they were able to kill every last spirochete by using 4 round of rocephin (ceftrixone). Ceftin is similiar. Each treatment round, they washed away the abx and then retreated, by the 4th round all the germs were dead. Obviously ceftrixone will work a little better, but ceftin is an oral and easier to take, and works just about as well.

Dr. B and also my Dr. M.R. uses the dosage as 1 gram ceftin twice daily. (I hope it's okay for me to post doses... as usual and like other abx used for lyme they are pretty much double compared to other bacterial infections) You could also try herbals, either banderol or samento I suppose.
Posted 6/11/2015 9:41 PM (GMT 0)
OK, thanks so much for all of that - I will try to contact my lyme doc tomorrow. I was on cefuroxime for 3 months over 12 months ago - will it be ok (and still effective) to go on it again?

Thanks again xx
Posted 6/11/2015 9:53 PM (GMT 0)
Like the remitting relapsing tick fever in African countries, Lyme can relapse.

The writer Amy Tan says that she goes off of abx until she feels the symptoms coming back on, and then her LLMD puts her back on the iv abx.

My personal belief is that there is no ultimate cure for Chronic Lyme.

My dog is on Doxy permanently, although sometimes I give her a day off.

If any of my treatments ever start working in any substantial way, I plan to stay on them, but a lot of folks like to pulse on and off. The herxing would be too much for me.

Since Lyme and cos live in cysts, it's hard to kill all of them.

Some protocols, like the Cowden protocol, claim to cure Lyme, but the treatments are very intense, and some folks can't tolerate them.

Margaret
Posted 6/12/2015 10:56 AM (GMT 0)
Thanks teregram. So maybe the pulsing on & off abx is a good way to go :-/

I'm waiting for my lyme doc to get back to me at the mo, but I'm anxious to get something sorted before the weekend . . . If the worst comes to the worst, I do have a few days worth of doxy to hand . . . Should I maybe just start with them? What do you think lymepickle? :-/
Posted 6/12/2015 2:11 PM (GMT 0)
LP-I thought the "kill all" also had the dapo abx? I have to look back on that. U mention Biaxin. 2 mos here on the equiv-clarithromycin & positive results (more stamina, less pain, clearer mind...).

Flos~I dunno-tho if ur doc doesn't get back, I sure would be grabbing for the doxy to keep things at bay. X
Posted 6/12/2015 2:24 PM (GMT 0)
happyjo... No there was another research study done that was just released that showed you can kill ALL, by pulsing a cephalosporin (rocephin AKA ceftriaxone was used), 4 times. Each time you have to stop the abx and let the abx clear, in the lab they washed the remaining abx away, in the body you can just stop them and allow the body's natural metabolism to remove the abx... to allow the germs time to start regrowing. Traveler was actually the one who posted the link to this research article which was just released.

The other article for "Kill all" was with cefoperazone + daptomycin + doxycycline... This killed all the germs in 15 days which is amazing. I would much rather have a 15 day treatment than a 2 year treatment that is for sure. The thing is daptomycin is currently reserved by doctors in hospitals for severe staph infections that can be life threatening, and cefoperazone is an IV antibiotic that is not readily available. I don't think doctors will be willing to use these on patients just yet... That would be double IV abx (both daptomycin and cefoperazone are IV abx) with the doxy. I think they may need to do clinical trials first... OR the only people that will have access to this kind of treatment are people in power or with lots of money.
Posted 6/12/2015 2:34 PM (GMT 0)
Thanks happyjo. Do you think I should take some of my doxy while I'm waiting for my lyme doc to get back to me too, lymepickle? I'm unlikely to gets my new abx before Tuesday now because of the weekend :-(.
Posted 6/12/2015 3:45 PM (GMT 0)
Thanks so much everyone for all your help - my doc has put me on 6 weeks of cefuroxime. While I'm waiting for it to arrive, I will take my doxy. Thanks again for your help :-) xx
Posted 6/12/2015 4:26 PM (GMT 0)
Is this the study you are referring to?
http://aac.asm.org/content/early/2015/05/20/AAC.00864-15

(Also: http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/)

If I am reading this correctly (?), ceftriaxone, is indeed pulsed; however, after & in addition to the other abx pulsed-?

"Daptomycin, a membrane-active bactericidal antibiotic, killed stationary phase cells, but not persisters. Mitomycin C, an anti-cancer agent that forms adducts with DNA, killed persisters and eradicated both growing and stationary cultures of B. burgdorferi. Finally, we examined the ability of pulse-dosing an antibiotic to eliminate persisters. After addition of ceftriaxone, the antibiotic was washed away, surviving persisters were allowed to resuscitate, and antibiotic was added again. Four pulse-doses of ceftriaxone killed persisters, eradicating all live bacteria in the culture."

Post Edited (happyjo) : 6/12/2015 10:42:25 AM (GMT-6)

Posted 6/12/2015 6:28 PM (GMT 0)
No I think what they did was use multiple different therapies and experiments.  The highlight was the pulsing of the ceftriaxone which is actually more doable than the other therapies. 
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