So after reaching a plateau for a few months with progress I did an experiment last week when I went on vacation. I didn't
take any antibiotics for 5 days but continued with my supplements. I had a great week, plenty of energy, plenty of
sleep, indulged in good foods, did sports activities all day, and even dared to have a few beers. Felt great like I didn't even
know I was sick. Then one more day before work I still didn't take my abx.
Come Monday I started abx fine with no problems, Tuesday was eh, Wednesday I started to feel gross and toxic again and
now today I'm like ok I never want to see abx again. Because I only have one symptom maybe one and a half left I feel like
this decline is NOT due to a herx but is due to the actual side effects of abx themselves and my body just saying no more.
My LLMD wants to pull me from abx in September but I fell like I'm done now. Maybe come off abx and switch to samento and banderol? What do you guys think?
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Stick with your ab x until Sept, like your LL says.
My doc said the same thing, likes the symptoms to be gone for two months before stopping abx.
Dr B also says to treat after symptoms are gone to avoid relapse.
I know it is hard-i quit abx for financial reasons about two months ago.
My symptoms were about 75% gone.
My doc didn't want me to because I wasn't yet symptom free for two months. But I had to.
Now they are slowly creeping back.
You don't want them to creep back. It is sad place to be.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Sometimes I wonder if some of my feeling 'blah' are side effects from the abx?
Everyone says there are solo many side effects from taking ABX. They can really be anything... Yet, whenever someone says they are feeling "X"...we are quick to dismiss it as a herx...
I too have gone on vacations where I have taken breaks from my ABX and feel 'normal' just to return home and go back on them. I go from feeling 100% off of them, to about 90-95% while on them. People will tell me, "the abx are killing the buggers and thats why you are feeling like this..." ....I wonder sometimes if it is really side effects from the ABX.
That said...you said you have one..one and a half sx left? I will say you have two, because I don't know how you have a 'half' symptom. LOL. For that reason I would remain on ABX till September and speak to your LLMD regarding those symptoms. Good Luck! Sounds like Remission is right around the corner!
Posts: 153 | From Midwest | Registered: Jan 2014
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CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
Also I know nothing about samento and banderol
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I am no dr, but when I went off abx I felt way better, but I wasn't on what was helping me really , I think.
I had also started a new treatment with a new dr at that time- all herbals. he said it was up to me to stop abx and I stayed on them a few more months until I was almost out of them
I was on doxy and bactrim I think at that time. I was very sick with GI issues.
I couldn't afford IV, so maybe that would have been better for me?
did you say why your dr said to wait until Sept? I missed that. what would be the reason?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
It'll be one full year of treatment and I'm going into the police academy and don't want to have to answer questions about why I'm on so many abx
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Ever have a liver CT scan?
Even IF liver enzymes are okay.
The scan can pick up problems....steatosis = "fatty liver" which can be corrected.
There are ways to speed up brain processing such as this free "game" played on the internet:
posted
Marnie I take a bunch of nueroscience products to help correct the anxiety/cortisol issue which have those ingredients in them such as travacor, calm cp, excita plus, and mentalast.
The reason I think it's the abx making me feel sick is because off abx I have one symptom which is a slow healing thing anyway. On abx I have a few symptoms that I don't feel like are herxs or an increase in symptoms because they don't exist when I'm off abx
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
Update: day 5 back on abx feel like garbage. Slept like crap, no energy yet to anxious to relax. Something's up..
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I am just guessing here, but maybe the improvement you felt was because you treated? I think it is normal to feel worse when you restart the meds. Maybe you still have some bugs left to get? Time will tell.
Posts: 4681 | Registered: Oct 2000
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posted
Who's knows. Either going to stop abx again or fight through just having trouble commiting to one
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Stick with it as long as you can. Don't risk a relapse and letting the ketes get a foothold.
If you must, stop before you go to the police academy, if you don't want to answer questions about abx but take them as long as you can, then switch to herbals.
What if you stay off and then have a huge set back before September. Is that a risk you want to take?
Rule of thumb generally is to stay on abx three to four months after being completely symptom free and even that does not guarantee that symptoms won't return.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Forgot that I was supposed to be taking cholesteramine, last night couldn't sleep due to that anxiety feeling ending up taking some then slept like a baby. Maybe I have a detox problem...
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Anyone with TBI's has a detox problem. Glad it helped you.
Detox is super important.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Good to hear from you again abxnomore wish it was better news to tell you however. But thank you for the advice as it is always appreciated
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I agree with staying on as long as you can. But I also know when you get to that point that you say I'm done! My recent theory is abx make you feel better (except for cyclical Herx) until you've taken them too long or too much.
I wouldn't worry too much about explaining to the police academy. You just say I am at the end of my Lyme treatment.
I have to say, i have rarely gotten push back here in Massachusetts. I think we are luckier than most.
Posts: 1728 | From USA | Registered: May 2011
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posted
I got denied from TSA after a 3 month employment process because I told the doctor who did my medical examination that I had Lyme. He said how long have you been treating I said 6 months and he said oh so you have chronic Lyme. Next thing I know I get a rejection letter in the mail so not taking any chances this time.
As far knowing when I've been taking abx for too long do you think my feeling Bette after taking Cholesteramine is Due to needing to come off abx or needing to stay on. I'm thinking it either swept up Lyme debre or swept up abx toxins that I just don't need in my body anymore?? Million dollar question
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Ouch. Sorry to hear about the TSA. Million dollar question is right. But sounds like you are doing well... So I would trust your llmd if you can stand it. September is just around the corner (sadly... I hate winter)
Posts: 1728 | From USA | Registered: May 2011
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
It most probably swept up Lyme debris, you have a tremendous amount of die off going on and the body needs help in eliminating it.
Try upping your detox protocol. It may speed things along.
It's nice to know that the TSA knows about chronic lyme, but 90% of our doctors don't!
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Any suggestions as to what else to take to detox ? Already take cholesteramine x2 a day and even have to wake up in the middle of the night to take it as there isn't enough time in the day to take all this stuff. I Also drink lemon water all day and drink the occasional pinella tincture
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I had plateau'd- I couldn't take one more abx. I went off and felt crappy for a month. Then slowly, I started feeling better- off 6 months now- feel much better!!
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
That's interesting Beths. Seems like it's a split decision between everyone
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
Update. After two days of double dose cholesteramine I feel fantastic again. It was clearly a detox issue. However it gives me crazy heart burn so I'm looking for an alternative. I just ordered some burbur see how that goes
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
I've been of abx now for three weeks,feeling good.
I am trying to not take then anymore (5 years on and off).
I have been taking large quantities of Green Dragon LB core instead.
I think we need to listen to our docs but also use our own judgement to custom tailor our treatment protocols.
It is maddening the extent of layers of how lyme and co's effect our lives. Great news on the cloresteramine working! I have and will recommend herbs before abx.
Posts: 342 | From northern california | Registered: Dec 2010
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