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7 1/2 weeks off abx.....no relapse

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Posted 4/19/2020 9:35 PM (GMT 0)
So, as some of you know here...I have been on abx since mid 2014. Saw a LLND here in my Province from mid 2014 to 2016. Then stopped seeing him...and stopped abx - did a few other 'things'. ie CBD oil (didn't help), some herbals - and several 'rounds' of Artemisinin as I had plateaued with the LLND - but he didn't treat me for Babesia.

Then in 2017 I self-treated Babesia with some Mepron that was 'given' to me along with some abx from ADC. I think this lasted 5 months.

In 2018 (February) I went to the Jemsek clinic. I treated for a year - Babesia, Bart/Persisters.
And have been on Maintenance for the past year - taking abx 4 days per month.

The timeline above is approximate....

I decided not to go back on them for my last round. It's now been 9 weeks without abx.

I don't feel any worse at this point.

Tomorrow I will be going back on to see how I react.
Still fighting a few symptoms.... mainly the nerve pain - upper left side, arm and hand. (Not too bad the last couple of days) That was my very first symptom. Also have some head fuzziness. My memory isn't the greatest still.

If those would resolve...I'd be good to go.

Sometimes I wonder if I didn't treat Babesia long enough...hence the head fuzziness.
Dr. J. said he thinks I would be much sicker if I still had babesia all this time.

What do you all think?
Posted 4/20/2020 4:26 AM (GMT 0)
I remember you posted a number of times about herxing on the maintenance protocol. When was the last time you had any herxing or noticeable response of any kind to the abx?

What did Dr J attribute the nerve pain to? The cognitive/memory issues?

Did you decide to just quit Dr J or you just skipped your last appointment?

Post Edited (WalkingbyFaith) : 4/19/2020 10:29:23 PM (GMT-6)

Posted 4/20/2020 5:38 AM (GMT 0)
I’m happy for you Girlie. Sounds like you’ve come a long way and it’s such a tough road so congrats! But... if you’re worried about babesia, maybe talk to the dr about doing some babesia provocation in addition to the maintenance antibiotics. You could try some good herbs to see if you get a herx? I am a worrier though so that is just me.
Posted 4/20/2020 6:30 AM (GMT 0)

WalkingbyFaith said...
I remember you posted a number of times about herxing on the maintenance protocol. When was the last time you had any herxing or noticeable response of any kind to the abx?

What did Dr J attribute the nerve pain to? The cognitive/memory issues?

Did you decide to just quit Dr J or you just skipped your last appointment?

I herxed on the last one I was on - that was February. Well, I'm attributing it to a herx...and it's been the pattern for most of my Maintenance. I got an increase in head pressure, and thoracic pain...I didn't get the fever this last time... Then I decided to take a long break (on my own) and see what my baseline really is. So I skipped the March antibiotics.
So, I'm just questioning is it all really herxing... or just the abx? It does seem like it...ie fever, increase in body pain, and head pressure.... And it always happens at the end of the week.
Dr. J thought it might be the Tinidazole - busting cysts. But, I just went through my past protocols tonight and one month I actually skipped the Tinidazole...and i still herxed on the Friday evening.

Trying to decipher my notes that I made during the last two appts. with Dr. J.
He said my sympathetic nervous system was on overdrive...and that was causing the a.m. (minor) sweating. He said my autonomic nervous system was still healing.
He also said that he thought my head pressure was from glutamate...and my brain was still a little 'raw'.
Told me to take Taurine to block the glutamate.

For the nerve pain he wants me to put the nerve pain cream he prescribed on the back of my neck daily. On the 5th root and down to the base of my neck.

Overall, he said that slowly over time things should be calming down.... and I have had some good days, this past week.

I am still seeing Dr. J. My last appointment was in March. It was over the phone because of Covid - I didn't want to travel. I find the in-person appts are much better. He does a great physical exam and I just get more out of those appointments.
My appointments are 6 months apart now.
Posted 4/20/2020 6:34 AM (GMT 0)
I have had another improvement. I have had POTS with Lyme. Not severe...but when I stand up, my heart rate would go up - over 120 bpm. Sometimes 130 bpm.
And if I do several 'ups and downs' consecutively, I would get out of breath.

But, it's improved in the last several months. It now only goes up to 98 to 100 bpm. Still too high...but much better than it was.
I did some yard work today...and I was raking leaves and pine needles...bending down and picking up the piles to put into the bags....and I did not get winded at all.
Posted 4/20/2020 6:39 AM (GMT 0)

Upatnite said...
I’m happy for you Girlie. Sounds like you’ve come a long way and it’s such a tough road so congrats! But... if you’re worried about babesia, maybe talk to the dr about doing some babesia provocation in addition to the maintenance antibiotics. You could try some good herbs to see if you get a herx? I am a worrier though so that is just me.

Thanks! I did ask Dr. J. about lingering or returning of Babesia. And he thought I'd be sicker than I am.
....he thinks the sweats (which I was wondering if it was babs) was not Babesia....just my autonomic nervous system still suffering from Bart.

i was taking some non abx during the Bartonella/persister's protocols (after I did the Babesia treatment) - Dr. J. had me take Artemisinin and Cryptolepis along with the Bart meds.

I also am a worrier......sigh.
Posted 4/20/2020 9:55 AM (GMT 0)
For me, the herxes showed up pretty clearly on the blood test as increased neutrophils and decreased lymphocytes, and this would reverse when I took a week off the abx. The lymphocytes aren't really gone, but they migrate out of the blood and into the infected areas.

The autonomic nervous system thing continues to bother me, and it shows up on the blood tests as the usual stress markers, glucose, epinephrine, homocysteine. My fasting glucose has been <100 mg/dL when I'm not herxing, so I'm not developing diabetes, but it does tend to go up a little due to herxing and other stress. Homocysteine has been an issue also, even when my B12 and folate are normal.

The herx pain is only in certain specific spots. There's areas in my knee and shoulder that tend to hurt when I herx, so I assume there are still bacteria there.

Blood tests continue to show elevated bilirubin and vitamin B6, although not every time. It tends to come and go, but I assume this is bartonella. Not sure what to do about this. I'm not having major bart symptoms, but it seems very hard to get rid of completely.
Posted 4/20/2020 11:48 AM (GMT 0)
Congratulations girlie. 9 weeks off would be amazing. I hope you continue to have success. I tried to quit just one abx around Christmas and after 10 days or so all hell broke loose. Not there yet but encouraged by your story. Good for you!
Posted 4/20/2020 10:22 PM (GMT 0)

Girlie said...


Still fighting a few symptoms.... mainly the nerve pain - upper left side, arm and hand. (Not too bad the last couple of days) That was my very first symptom. Also have some head fuzziness. My memory isn't the greatest still.

Do you take magnesium regularly, and if so, what kind? My nerve pain is mainly gone, though I wonder if it will come back. It was one of my worst Bart symptoms. Magnesium L-Threonate also helps memory, my dr. has me on the "Metagenics" brand, which is crazy expensive and I can only order it through Fullscript -- but it seems to work better than any other brand (I tried another brand briefly when it went out of stock). Magnesium is really helpful for nerve pain. I also eat a high fat diet now, so I wonder if that has helped my nerves. Terry Wahls recommends eating an entire can of coconut milk a day to help with myelin.
Posted 4/21/2020 12:52 AM (GMT 0)
Congrats Girlie ! Good to hear things are continuing to hold!
Posted 4/21/2020 2:16 AM (GMT 0)

Quin said...
For me, the herxes showed up pretty clearly on the blood test as increased neutrophils and decreased lymphocytes, and this would reverse when I took a week off the abx. The lymphocytes aren't really gone, but they migrate out of the blood and into the infected area.


Interesting - I never get increased neutrophils...
my wbc count is usually lower than it should be.

Quin said...

The autonomic nervous system thing continues to bother me, and it shows up on the blood tests as the usual stress markers, glucose, epinephrine, homocysteine. My fasting glucose has been <100 mg/dL when I'm not herxing, so I'm not developing diabetes, but it does tend to go up a little due to herxing and other stress. Homocysteine has been an issue also, even when my B12 and folate are normal.
.

I don’t have the high glucose. I don’t get the epinephrine or homocysteine tested so don’t know what mine are.

Quin said...

Blood tests continue to show elevated bilirubin and vitamin B6, although not every time. It tends to come and go, but I assume this is bartonella. Not sure what to do about this. I'm not having major bart symptoms, but it seems very hard to get rid of completely.

I had high bilirubin prior to lyme diagnosis from late teens on. Then after treating awhile - it went into normal range - so not an issue anymore. I believe I had Bartonella for most of my life - hence the high bilirubin.
Posted 4/21/2020 2:27 AM (GMT 0)
Sounds good, glad to hear you are improving
Posted 4/21/2020 2:31 AM (GMT 0)

WV Mike said...
Congratulations girlie. 9 weeks off would be amazing. I hope you continue to have success. I tried to quit just one abx around Christmas and after 10 days or so all hell broke loose. Not there yet but encouraged by your story. Good for you!

I find it difficult to gauge - yesterday for a few hours my right hand fingers were stiff. But it went away and is fine today. I’m not counting it as a relapse because it did resolve.

Keep at it Mike - it’s so darned persistent and such a brawl - but I am not giving in to it ... no way!
Posted 4/21/2020 2:37 AM (GMT 0)

orbitingaround said...

Girlie said...


Still fighting a few symptoms.... mainly the nerve pain - upper left side, arm and hand. (Not too bad the last couple of days) That was my very first symptom. Also have some head fuzziness. My memory isn't the greatest still.

orbitingaround said...
Do you take magnesium regularly, and if so, what kind? My nerve pain is mainly gone, though I wonder if it will come back. It was one of my worst Bart symptoms. Magnesium L-Threonate also helps memory, my dr. has me on the "Metagenics" brand, which is crazy expensive and I can only order it through Fullscript -- but it seems to work better than any other brand (I tried another brand briefly when it went out of stock). Magnesium is really helpful for nerve pain. I also eat a high fat diet now, so I wonder if that has helped my nerves. Terry Wahls recommends eating an entire can of coconut milk a day to help with myelin.

I used to take magnesium biglycinate but Dr J had me switch to threonate. Yes I take it along with curcumin, Quercetin and Taurine.
Posted 4/21/2020 2:40 AM (GMT 0)

k07 said...
Congrats Girlie ! Good to hear things are continuing to hold!

Thank you! I have gone back and forth - almost started the abx several days ago - so worried I will push it too long and relapse !

Tomorrow is the day I think I will do my one week if m/w/th/f of abx
Posted 4/21/2020 2:41 AM (GMT 0)

Lapis_29 said...
Sounds good, glad to hear you are improving

Thank you!
How are you doing these days?
Posted 4/21/2020 3:50 PM (GMT 0)
Hey Girlie,

Just catching up bit here, the pandemic and erratic work schedule has me all messed up.

Lingering neuro issues including nerve pain, cognition lapses, body vibrations, and fatigue are also what I live with. And now that I've ruled out small fiber neuropathy with expert Peter Novak in Boston, this looks like it may be as good as it gets for me. I've been off ABX now since mid January when I stared to ramp up DSF with no significant changes. I guess DSF is less toxic than the ABX combos I have taken over he years and may be far less expensive too once they solve the wholesale availability shortage.

Post Edited (tickbite666) : 4/22/2020 5:40:15 AM (GMT-6)

Posted 4/21/2020 5:46 PM (GMT 0)

sandyfeet said...
This sounds like good news Girlie! Hoping things continue to improve for you.

i had actually forgot to list the POTS in my 'remaining symptoms'.
But, it has actually improved....checked my pulse a few times yesterday....after several 'downs and ups'. (squatting, then standing...repeat)
Posted 4/21/2020 5:49 PM (GMT 0)

tickbite666 said...
Hey Girlie,

Just catching up bit here, the pandemic and erratic work schedule has me all messed up.

Lingering neuro issues including nerve pain, cognition lapses, body vibrations, and fatigue are also what I live with. And now that I've ruled small fiber neuropathy with expert Peter Novak in Boston, this looks like it may be as good as it gets for me. I've been off ABX now since mid January when I stared to ramp up DSF with no significant changes. I guess DSF is less toxic than the ABX combos I have taken over he years and may be far less expensive too once they solve the wholesale availability shortage.

Tickbite - you have said that you've relapsed before - a couple of times? Prior to relapsing....you have those symptoms you mentioned? Or those are the symptoms when you relapse?

I have what you mentioned...except not the fatigue. I guess that's 'something'.....

I'm not giving up...or giving in to it yet....it's enough to affect my well being....not sure what's next....as far as treatment...

I still haven't started back on the abx.

maybe tomorrow.
Posted 4/21/2020 6:08 PM (GMT 0)
I've tried to wean off ABX twice in the past five years. Both time while taking a good amount of Burner herbals.

I could go up to 3 months off abx then would have a return of past sx. I've also tried pulsing to help wean off with similar results. Its all becoming a blurr if my remaining sx are a result of a return to past sx and still have an active infection or feeling that this is a good as it gets and get over it.

One positive note is that I not have had any occurrances of spontaneous bruising or blood vessel ruptures on my forearm in the past few weeks while on DSF. This has always been a sign of an active infection.
Posted 4/22/2020 6:39 AM (GMT 0)
Okay - I lied. It's been 7 1/2 weeks not 9 weeks. Made a mistake.

I am starting tomorrow.....unless I wake up and feel GREAT...then i may not.

tick bite - sounds like DSF may be helping you. Keep us posted.
Posted 4/22/2020 6:13 PM (GMT 0)
In another thread, oregonhay posted:

“ My immune system has picked up and is doing the rest. Occasionally I wake up with a similiar-to-disulfiram-hang-over-herx that I use to get, meaning my body fought something. But it isn't to bad. I expect to have these for an additional 6-8 months as small amount of lyme break out and re-enter my blood stream or an area my immune system can hit it. But again it is a very very small amount and I am 100% functional -- I am working out, eating, making plans, schedules, continuing on with my life.“

I am reconsidering going back on the abx today.
I’m wondering if my immune system is starting to handle things.

Today my head doesn’t feel “full” and so far my upper back, arm, hand are good.

I think I will give it a few more days...
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