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Posted 12/21/2011 1:43 PM (GMT 0)
After a trial month + of no ABX-- and doing really well --  symptoms started to creep back. UGG! 

I couldn't regulate my temperature-- was having hot flashes then chills.  My right knee had migrating pain, elbows and both knees felt stiff, arms were aching, soooo fatigued by the end of the day with an all over feeling of unwellness.

Back on Biaxin and soon to add Flagyl.  

Thankfully NO real herxing...just a bit of a 'hung over' feeling in my head for a few hours after taking the Biaxin.  Symptoms are going away, but slowly.  Aleve is helping a lot-- gets me through the day.  

Hopefully this will be the last blast! 

DARN !!!  Just when you think you're out.....they suck you back in!   mad

Happy holidays to all....may joy fill your heart!  

 

Posted 12/21/2011 1:51 PM (GMT 0)
why did you stop the abx in the first place? Your LLMD told you to? Just for a break? Were you doing herbals in the interim? Just wondering....
Posted 12/21/2011 2:57 PM (GMT 0)
Hi yazzer,

I was on abx for a year. At the end of this time I had improved almost 100%. I could have stayed on abx longer....but to tell you the truth I was just sick and tired of taking them and juggling the probiotics and vitamins in between.

More importantly, the occasional aches and pains I still had could not necessarily be attributed to Lyme. I'm 57, play tennis like a fiend and due to all the extreme sports I've done in my life-- plus two torn meniscus operations-- there is bound to be some natural wear and tear.

Interestingly, those aches and pains went away after stopping the ABX. Don't know why.

My LLMD had no problem with my stopping the meds-- though it was my idea.

We didn't consider it a break particularly-- more like "Let's see if your immune system can take over now." Obviously it didn't-- long term.

I don't feel I'm back to square one with Lyme and it's treatment.... but more needs to be done to continue to erradicate any buggers that are still around.

I was taking some Dr. J. herbals in the interim..... can't say they did any good.

But it was nice to be able to lead a normal, med-free life for a while.......and I'm confident this setback will be overcome.
Posted 12/21/2011 4:03 PM (GMT 0)
Cat111 - I hope you didn't take my questioning as an affront to you....I looked at it and it might have come across that way so I apologize if it did - no offense was intended.

I, like you, am a fitness fanatic, 52 yo - 6 days a week in the gym - weights and running (35-40 miles/week). I have completed 4 marathons, probably 20 half marathons and many hundreds of 10-milers down to 5K runs. I came into this year with a goal to run 2011 miles in 2011 - ironically, I think that was one stressor that allowed my dormant Lyme to resurface! So I am rather extreme with the sports as well all my life! I also hear you about the abx growing old after a while - I am very anti-mediciation typically and will only take a chemical medication as a last resort. That said, I felt the need to go with abx for the Lyme treatment since it's been in my system for at least 35 years and I felt it was the only way to be as completely 'cured' as possible from it.

I am sure you are not back at square one by any means. Have you tried other things like acupuncture and/or chiropractor? The former really has seemed to help me and is confirmed with several other Lyme folks in my immediate vicinity. I am lucky to have a practioner that actually had a VERY BAD case of Lyme and co-infections about 5 years ago - so she knows what to do, especialy when it comes to supporting the detox pathways and boosting immune response. I plan to try out a chiropractor come January to see if that helps as well.

The reson I even asked you in the first place about why you stopped is that I am wondering when I will stop - at what point do you get there? Much literature suggests 2-3 months symptom-free, but there doesn't seem to be any hard-and-fast rule there (as with all this Lyme stuff). I am back to running and slowly ramping up - now at 10-15 miles/week. I have put on 18 lbs with this Lyme because I have not been running - I plan to lose all that by March 1st! I am HOPING to run a 10-mile race on March 4th - it's one that began in my hometown back in 2005 and I have run it every year - it's for cancer research and in honor of a running colleague who died that year. They have a 5Koption but, as you can probably relate, I always opt for the longer distance choice!.

Anyway, thanks for your response - I hope you knock out those returning symptoms quickly and effectively very soon!
Posted 12/21/2011 4:23 PM (GMT 0)
No offense taken at all !!! ::)))

WHEN to stop abx is a real dilemma. I guess it can depend on what your body is telling you......and mine wanted to stop. Even my brain was saying STOP because I suddenly began to forget to take my abx-- which my LLMD read as a good sign. When you feel rather NORMAL you can begin to think normal.....and normal doesn't include taking a bunch of pills! LOL

I suppose there is some logic to that! LOL But I wouldn't have stopped treatment IF my LLMD had insisted I continue.

Would I have been better off (no relapse) IF I had continued with the ABX and stopped at a later date??? No way to know that. I just took a chance because I felt ready. And so another round of abx is in order and Lyme life goes on.

Accupunture did help with my stiff neck.....but it didn't cure it. It always came right back after a few days.... so I abandoned the practice-- plus it was expensive and quite time consuming.

All things considered.......serious exercise (in addition to ABX) was the key for me. I really believe that oxygenated blood does the Lyme buggers in!

Running is great for that! Keep up the good work. :)
Posted 12/21/2011 4:38 PM (GMT 0)
I'm sorry to hear you have to go back on abx for a while longer, but congrats on getting so much better! Can I ask...after being on abx for so long, did you feel much better once you were off them? Sometimes I want to go off my abx just to see how much of how I feel is due to actually taking abx.
Posted 12/21/2011 7:55 PM (GMT 0)
I actually DID feel a lot better.....the nagging muscle pain in my shoulders and upper back-- that I had forever it seemed, once I started treating Lyme with abx-- went completely away after a few days of being off them. Go figure.

The rest of the month was glorious!!!! .....and then the symptoms I mentioned crept back.
Posted 12/21/2011 10:59 PM (GMT 0)
Hi Cat, I am going thru this now as well. I have cut back on antibiotics to try and wean off but am having symptoms come creeping back - eye blurriness, terrible knee pain, stabbing pains in joints and nail beds, etc. So disappointing isn't it. I am so perplexed now about what to do? We can't stay on them forever. Do you wonder what to do? I guess I'll have to talk to my LLMD about incorporating in the natural antibiotics before I stop the others. IDK.
Posted 12/22/2011 12:30 PM (GMT 0)
Hi springsjean,

So sorry to hear you're going through this too....and I also I worry about what to do next.  I'm trying to keep my spirits up but..... eyes

My only hope is that since it's winter and there are no ticks (won't get re-infected) that this last round will do the trick.....and maybe there will be one more round after that with a break in between to see what happens.  But you're right -- we can't do this forever. 

Is it even possible to kill every last spiro and/or cyst or whatever else the buggers do to evade abx?   Obviously they still are still around doing damage. 

No way I can afford IV....which might be the only method to get them all....but I'm not sure. Have to ask my doc about that. 

I still keep going back to Burrascano's plan of 'three's a charm'.....where you have to do three breaks off abx, get really sick again each time and treat again with abx....and then you'll have gotten them all.  

So I'm going to consider this round as # 2.......then once I feel well again I'll quit the abx, see if I get sick again and if so, I'll do the 3rd round. 

But if this method was so tried and true I think we would have heard more about it.  The only place I read about it was in the book 'Cure Unknown'.  But I guess it's worth a try. 

Unfortunately I did not allow myself to get REALLY sick again-- because I just can't be out of commision and go through Lyme hell again.  That's just too scary!   Letting the spiros flourish and reproduce at will does seem like it will bring a person back to square one and that you'd never get better. But perhaps that's not what happens.

What natural abx do you think you would try?  My doc hasn't even mentioned that route.  

 

Posted 12/22/2011 1:18 PM (GMT 0)
Hi Cat,

Are you detoxing? What is your diet like? 

If not detoxing, toxins are probably causing your symptoms, not the bacteria in my non-medical opinion.


Denise

Posted 12/22/2011 1:23 PM (GMT 0)
Hi Deejavu,

Yep....I detox bath regularly and eat health to a fault. But toxins are certainly to blame for some of the symptoms. I take Dr. J detox too.....hope it's helping.
Posted 12/22/2011 3:42 PM (GMT 0)
I think it might have more to do with the immune system - if you can get it back in order then the body can take over where the abx left off. Just not sure how you can measure progress of your immune system...CD57 seems unreliable. I am not there yet but I am wondering how I will know when and how to end treatment! In the past, when all this mess was blamed on anxiety/stress/depression, the symptoms just slowly resolved on their own and I was good-to-go for another 5 years or so (this, with no meds or detox of any kind! But I did slow down and I did eat a more healthy diet). I assume that my immune system just came back into full active mode and suppressed the critters (until the next big stressor let them out again!). So maybe that's what will happen again.

I am definitely feeling a lot of forward, positive progress inmy treatment. One of my LLMDs wanted me to double my abx dosage an dI tried that for 10 days and just didn't feel 'right' - it wasn't any notable increase in symptoms or herxing, I just do not like to take any more meds than I have to....so I am still at 500 mg each of Ceftin and Biaxin per day with Flagyl lying in the wait. I have very slowly increased my Byron White A-BAB and A-L Complex from 1 drop each every two days up to 4 drops each per day now (over a 6-week period) - and I take 4 drops of GSE per day. The BW is supposed to help modulate the immune system plus I take a boatload of vitamin C - anywhere from 5 grams up to 15/20 grams a day!

Strange ride, this Lyme Disease, I tell you!
Posted 12/22/2011 8:29 PM (GMT 0)
Hey Cat,
I just wanted to stop by and tell you that I'm so sorry to hear that you are back on abx again! I know that you will do well though! Hang in there!!
Posted 12/22/2011 10:57 PM (GMT 0)
I'm a-hangin' LOL ((hugs))
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