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Posted 7/25/2018 8:12 PM (GMT 0)
Relevant background:

sick april 2013 - hit hard and fast

2014 did lyme treatment

Then did bartonella treament from end of August 2015 and through 2016.
Had a positive bart test via pcr (saw the dna of bacteria in my blood ) in October, 2016. (So bart not gone)

Self treated for babesia most of 2017.

Jemsek clinic Feb, 2017...on babesia focussed treatment.

For the last two cycles (cycles = 4 weeks) on my own, I did two weeks of bart treatment, one week babesia, one week off (instead of 2 weeks babs, 2 weeks off) because I've had a few symptoms return that I think are bart.

Last Friday was my last bart (took it M/W/F that week) treatment.
Saturday afternoon I felt a pain in my lower left abdomen...hurt to push on it. Then my back pain ramped up...along with the shivering.
It progressed.....and I haven't felt THIS bad for maybe 2 years. I was in tears...and my husband also said he hasn't seen me like this in a long time.
The pain was really bad...in the back area, my left arm and hand.
I took my temperature - which I haven't been doing, but I've always run cold - usually 36.5 C or 97.7 F
It was 37.9 (100.2 F) I have never had a higher temp like that since having lyme.

Had trouble sleeping....but finally fell asleep...got a few hours.

Next day, woke up and no pain - abdomen pain gone...and felt good. One of the best days I've had in months. Such a quick turn-around - I'm thinking it was a herx.
The lower abdomen pain just vanished.

I do think I need bart treatment now that babs has been treated extensively.
But, I can't tell the Dr. about my experience...as I varied from my protocol...and I don't want to be 'fired'.

My appt. is in August.

Should I just say that some of my bart symptoms have come back (truth) but leave out that I did a few weeks of bart treatment.

Your thoughts? agree this was a herx?
Posted 7/25/2018 8:44 PM (GMT 0)
Wow that totally sounds like a herx to me... and thank goodness it only lasted a day!! The high temp this is what’s leading me towards herx.
Yeah I def wouldn’t tell them u strayed from the protocol.. just be like, my bart symptoms are coming back and I think we should treat it. It doesn’t hurt to ask.
Do u have a phone appt or a in person?
Posted 7/25/2018 8:57 PM (GMT 0)
I agree with physedgirl. I wouldn't tell them you strayed away from the protocol but instead that you suspect bart may be something to start looking at, like you said.

I am in this situation a lot with my doctor so I understand it's a tough position to be in. I think doctors get annoyed when we try different things (for good reason) and we get annoyed when we feel so strongly about treating differently (also for good reason).

Sometimes I wish could get their protocols and self treat, but I know that could be dangerous as well.. lol
Posted 7/25/2018 9:03 PM (GMT 0)

physedgirl09 said...
Wow that totally sounds like a herx to me... and thank goodness it only lasted a day!! The high temp this is what’s leading me towards herx.
Yeah I def wouldn’t tell them u strayed from the protocol.. just be like, my bart symptoms are coming back and I think we should treat it. It doesn’t hurt to ask.
Do u have a phone appt or a in person?

Thanks, yah, I think that’s what I’ll say - it’s true some have come back.

I should have called first - they may have agreed to it anyway.

In person appt - 45 minutes long with dr J himself.
I called today to confirm and I’m still scheduled with him.


I’m feeling optimistic - as I see this as a good sign - my bart was still (showed on testing) there after extensive treatment and then I herx after treating Babs and then coming back to Bart.

Maybe Dr J is on to something - and Babs needs to be treated before we can fully treat the others’

And Buhner says one of bart symptoms is FUO (fever of unknown origin)
Posted 7/25/2018 9:28 PM (GMT 0)
Hehe Girlie, I did the same thing recently, except in regards to babesia. I was suspecting it might still be an issue but my llmd (who is very good imo) wasn't keen on tackling it. Well, I wanted to get some confirmation before I really pushed them further on this issue, so I tried some stuff on my own and got a huge herx. It sounds that you also got a huge herx as well.

I didn't tell them what I did, but what I told them was that I really believed I needed to hit babesia and that I still had babesia symptoms that were lingering (all true). I wrote a comprehensive (and somewhat pushy, which I apologized for) email listing out remaining symptoms and why I thought I absolutely needed to treat babesia.

I was also worried about telling them about my personal experiment confirming babesia. Yes a little bit worried about getting "fired," but more concerned about irretrievably damaging the patient/dr relationship. There was a possibility it could cause resentment and damage in trust. I don't like straying like that, but when it comes to this stuff I've lived with it long enough to have a feel for it and have come to generally trust my instincts.
Posted 7/25/2018 10:43 PM (GMT 0)

NicHostetler said...
I agree with physedgirl. I wouldn't tell them you strayed away from the protocol but instead that you suspect bart may be something to start looking at, like you said.

I am in this situation a lot with my doctor so I understand it's a tough position to be in. I think doctors get annoyed when we try different things (for good reason) and we get annoyed when we feel so strongly about treating differently (also for good reason).

Sometimes I wish could get their protocols and self treat, but I know that could be dangerous as well.. lol


Self treating is not fun - I did do it but felt such a relief when I scheduled my first appt with the J clinic.

I didn’t have any options here unless I wanted to give up the abx.
Posted 7/25/2018 10:47 PM (GMT 0)

sebreg said...



...but more concerned about irretrievably damaging the patient/dr relationship. There was a possibility it could cause resentment and damage in trust. I don't like straying like that, but when it comes to this stuff I've lived with it long enough to have a feel for it and have come to generally trust my instincts.

Yes - that - !!


Hehe - we’re going rogue... tongue
Posted 7/25/2018 11:24 PM (GMT 0)
we've talked about this girlie but here's my take since i also see Dr. J and you are about 6-9 months behind me.

Dr. J put me on a hybrid protocol after i did 9 months of babs only treatment. what was key was my liver and spleen were not swollen AND i did enough cycles of the biofilm busters so those got broken up so i wouldn't relapse.

i *****ed moaned and complained the entire 9 months to you and many others saying he's wasting my time i've already done over a year of babs treatment and couldn't get much better but now looking back it was absolutely necessary to get babesia good dead and buried.

treating babesia is akin to a marathon, or like investing in your retirement. it's long and boring but if you stick with it you'll get the results you want. the key is to be consistent and persistent with the right protocol (which Dr. J has figured out what that is for most).

so the hybrid means i went from 2 weeks on/2 weeks off to doing rifabutin/bactrim the 3rd week and an anti-parasitical the 4th week. this covered babs the first 2 weeks, bart the 3rd week and parasites the 4th week.

this is what's possibly upcoming for you girlie. if you tell him your bart symptoms are flaring and you want to get started on it and even be honest with telling him you were doing his babesia protocol for a long time (cause you learned about it on the internet), he WILL let you do the hybrid next.

after however long you do this the bart/persister protocol is next. Dr. J usually does this for 4 up to 6 months for almost everyone then its enough.

i'm on a modified protocol now which is less meds and less weeks doing meds. i have to say i'm feeling better than i have in a long time.

i feel better off the meds than on. that's good. i'm still not where i need to be but much better and i have hope i will recover from this. i couldn't say that until maybe the last month or so.

look at how many posts i have. i joined this forum when i got sick and many of you know me. for me to say this is a near miracle.

dr. j's approach works. its long, slow, boring and comes with a lot of pain and suffering as you peel back the layers of pathogens and your body recovers, but there is light on the other side.
Posted 7/26/2018 12:20 AM (GMT 0)
Truthfully Girlie,

I think it is amazing that you had a fever on your own...I never used to get fevers until I healed from lyme. I run at a normal temp but like you I always ran 'cold' for years and years....

Going rogue can be good but I truthfully don't know that I ever would have gone off of everything I did. At once. Cold turkey. I was terrified. But then other symptoms started dropping off and it was just weird. Go with your gut of course but also be okay to venture off the path and listen to the drs. Scary as hell though!

~beth
Posted 7/26/2018 2:27 AM (GMT 0)
Hi Girlie, I had something that sounds similar, including the high temperature. but with me, it turned out to be that I had food (meat?) that I ate stuck in my intestine. I had eaten meat the day before and my stomach was uncomfortable since. I guess that eventually it made it into my intestine and somehow it either got stuck or my intestine got lazy and could not move it along.

I went to the doctor because I could not poop and thought that I had a twisted intestine when I started having the high temperature. An X-ray showed that I had something stuck. She advised me to massage it slowly and it worked. Soon I heard a gurgling sound and felt immediate pain relief.
Posted 7/26/2018 7:44 AM (GMT 0)

Rikky1 said...
we've talked about this girlie but here's my take since i also see Dr. J and you are about 6-9 months behind me.

Dr. J put me on a hybrid protocol after i did 9 months of babs only treatment. what was key was my liver and spleen were not swollen AND i did enough cycles of the biofilm busters so those got broken up so i wouldn't relapse.

i *****ed moaned and complained the entire 9 months to you and many others saying he's wasting my time i've already done over a year of babs treatment and couldn't get much better but now looking back it was absolutely necessary to get babesia good dead and buried.

treating babesia is akin to a marathon, or like investing in your retirement. it's long and boring but if you stick with it you'll get the results you want. the key is to be consistent and persistent with the right protocol (which Dr. J has figured out what that is for most).

so the hybrid means i went from 2 weeks on/2 weeks off to doing rifabutin/bactrim the 3rd week and an anti-parasitical the 4th week. this covered babs the first 2 weeks, bart the 3rd week and parasites the 4th week.

this is what's possibly upcoming for you girlie. if you tell him your bart symptoms are flaring and you want to get started on it and even be honest with telling him you were doing his babesia protocol for a long time (cause you learned about it on the internet), he WILL let you do the hybrid next.

after however long you do this the bart/persister protocol is next. Dr. J usually does this for 4 up to 6 months for almost everyone then its enough.

i'm on a modified protocol now which is less meds and less weeks doing meds. i have to say i'm feeling better than i have in a long time.

i feel better off the meds than on. that's good. i'm still not where i need to be but much better and i have hope i will recover from this. i couldn't say that until maybe the last month or so.

look at how many posts i have. i joined this forum when i got sick and many of you know me. for me to say this is a near miracle.

dr. j's approach works. its long, slow, boring and comes with a lot of pain and suffering as you peel back the layers of pathogens and your body recovers, but there is light on the other side.

So it's likely I will be put on a combo of bart and babs plus some alinia for parasites next.
I hope so.
Although it's only been 6 cycles on the babs focussed protocols...he may throw in a couple more, which I'm fine with...just hope it's not another 4-6 cycles.....sigh.

Now I'm gonna *****, moan and complain about these dang babesia protocols.....I hate that yellow paint.
PLUS - I don't have air conditioning...and we're having a heat wave...and I'm babysitting the mepron...trying to keep it cool....
Posted 7/26/2018 7:50 AM (GMT 0)

opugirl said...
Truthfully Girlie,

I think it is amazing that you had a fever on your own...I never used to get fevers until I healed from lyme. I run at a normal temp but like you I always ran 'cold' for years and years....

Going rogue can be good but I truthfully don't know that I ever would have gone off of everything I did. At once. Cold turkey. I was terrified. But then other symptoms started dropping off and it was just weird. Go with your gut of course but also be okay to venture off the path and listen to the drs. Scary as hell though!

~beth

I can't remember the last time I had a fever....many, many years ago....before lyme.

I was kinda shocked .......but also kinda happy - as I've seen that a fever can be part of the herx package...and the fact that the next day...it all resolved is really pointing to a herx.

I didn't really go too far off the path. that's why I still did a week of Babesia for each of the two cycles that I added in the bart meds. So, instead of two weeks each cycle of babs, I only did 1 week.
Posted 7/26/2018 7:54 AM (GMT 0)

Healing98 said...
Hi Girlie, I had something that sounds similar, including the high temperature. but with me, it turned out to be that I had food (meat?) that I ate stuck in my intestine. I had eaten meat the day before and my stomach was uncomfortable since. I guess that eventually it made it into my intestine and somehow it either got stuck or my intestine got lazy and could not move it along.

I went to the doctor because I could not poop and thought that I had a twisted intestine when I started having the high temperature. An X-ray showed that I had something stuck. She advised me to massage it slowly and it worked. Soon I heard a gurgling sound and felt immediate pain relief.

You know - when I felt the pain in my lower left abdomen...at first I thought maybe it was some kind of block in my descending colon. But, along with that pain, and fever, I also had other herxing symptoms...a ramping up of my nerve pain in my upper back, and some head pain, and kind of a whole body pain, with shivering.

Then the next day....having a really good day...
Posted 7/28/2018 7:47 PM (GMT 0)
Curious how you'll like the Alinia. I've been taking Alinia which my doc says will help with the Q which acts like a blood parasite. I'm awaiting results from my recent Q test so we'll see if it works!

Glad to hear you're making progress Girlie! Curious what you took for your Bart treatment?

Post Edited (Mister Mike) : 7/28/2018 2:34:32 PM (GMT-6)

Posted 7/28/2018 8:20 PM (GMT 0)
First, I'm glad your better. I doubt your physician would fire you. I've spent 30 yrs Counseling people as a Pastor. One of the biggest obstacles to overcome and help people is just getting information out of them. Every session I try to dig a little bit more information from them. The more facts they give, the more I can help them.
My point being, I think this reaction you had may be a vital piece of information your physician needs. And, he/she works for you.

PS...Thanks for all your help on this forum...it has really been a help to me.
Posted 7/28/2018 10:33 PM (GMT 0)
Curious... do you at all suspect viral? Last January, I had that same exact lower left ab pain w/a feeling of possiblle bowel obstruction, &accompanied fever after having NO fever for many years. Went to urgent care & they ruled out just about everything, then tested forSEVERAL FLU strains, & guesswhat? It was a flu; BUT Id already had the flu Dec 23rd.

This past July 1st-3rd, i again had the fever w/increased fatigue, muscle aches, brain fog, etc. I dont know what that was, but I suspect herx as it happened just 6 days after restart of Alinia & doxy!!!

So, beginning Dec. 23rd when I KNOW it was the flu, then the January bowel episode, then Julys 3day fever> Im perplexed!!! I dont usually get fevers.
Posted 7/29/2018 12:58 AM (GMT 0)

Mister Mike said...
Curious how you'll like the Alinia. I've been taking Alinia which my doc says will help with the Q which acts like a blood parasite. I'm awaiting results from my recent Q test so we'll see if it works!

Glad to hear you're making progress Girlie! Curious what you took for your Bart treatment?

The past couple weeks leading up to the herx I was on Rifampin plus mino and Ceftin (m/w/f)

We have to get our alinia from a compounding pharmacy here in the north.
Or else buy it when I’m in DC

Any issues with the Alinia, MM?
Posted 7/29/2018 1:02 AM (GMT 0)

DonN said...
First, I'm glad your better. I doubt your physician would fire you. I've spent 30 yrs Counseling people as a Pastor. One of the biggest obstacles to overcome and help people is just getting information out of them. Every session I try to dig a little bit more information from them. The more facts they give, the more I can help them.
My point being, I think this reaction you had may be a vital piece of information your physician needs. And, he/she works for you.

PS...Thanks for all your help on this forum...it has really been a help to me.

Thank you - for your kind words.

I do agree this is an important piece of info.

It’s actually lining up with what Dr J says: you need to kill the Babesia before you can get at bart.
It could be why I wasn’t continuing to progress with my bart treatment in 2016 - because I had Babesia to deal with... and now that is out of the way ...
Posted 7/29/2018 1:06 AM (GMT 0)

mcspike said...
Curious... do you at all suspect viral? Last January, I had that same exact lower left ab pain w/a feeling of possiblle bowel obstruction, &accompanied fever after having NO fever for many years. Went to urgent care & they ruled out just about everything, then tested forSEVERAL FLU strains, & guesswhat? It was a flu; BUT Id already had the flu Dec 23rd.

This past July 1st-3rd, i again had the fever w/increased fatigue, muscle aches, brain fog, etc. I dont know what that was, but I suspect herx as it happened just 6 days after restart of Alinia & doxy!!!

So, beginning Dec. 23rd when I KNOW it was the flu, then the January bowel episode, then Julys 3day fever> Im perplexed!!! I dont usually get fevers.


I don’t suspect a flu or other virus because it wasn’t a tummy ache - it was a deep pain lower left side.
Also, other Lyme and co’S symptoms ramped up at the same time - upper back pain, etc

By morning it was gone and I felt really good - including the nerve pain in my upper back. Best I’ve felt in awhile
Posted 7/29/2018 1:19 AM (GMT 0)
Girlie - thanks for the info about Bart. I have never tested positive for it,but have long suspected it.

The Alinia has really helped my gut. Previously I was getting daily left and right sided flank pain and also this weird burning sensation. Alinia has stopped that. However, it hasn't touched any of my other symptoms and some have gotten worse. Part of the impetus for taking it was to get some abx treatment in as it is supposed to be "easy on the gut" as my gut has been so sensitive to abx since last Oct and I had to stop all abx at that point as I kept developing diverticulitis. So all the progress I made with Q went out the window and now I have it at greater levels than before. Hopefully from this I can transition back to abx again and get rid of this sucka...

Is Alinia crazy expensive for you? Mine was covered completely by insurance but the charge was like $5K. Now my deductible has reset I won't be getting any more of it.
Posted 7/29/2018 1:24 AM (GMT 0)

Mister Mike said...
Girlie - thanks for the info about Bart. I have never tested positive for it,but have long suspected it.

The Alinia has really helped my gut. Previously I was getting daily left and right sided flank pain and also this weird burning sensation. Alinia has stopped that. However, it hasn't touched any of my other symptoms and some have gotten worse. Part of the impetus for taking it was to get some abx treatment in as it is supposed to be "easy on the gut" as my gut has been so sensitive to abx since last Oct and I had to stop all abx at that point as I kept developing diverticulitis. So all the progress I made with Q went out the window and now I have it at greater levels than before. Hopefully from this I can transition back to abx again and get rid of this sucka...

Is Alinia crazy expensive for you? Mine was covered completely by insurance but the charge was like $5K. Now my deductible has reset I won't be getting any more of it.

Oh interesting it helped your gut

I have no idea how much it is here - ummm I won’t be paying $5k for it - I should phone the pharmacy here and ask how much it is - if it’s that much Ill see if there’s something else I can take instead.

How much did you get for 5K?
Posted 7/29/2018 1:26 AM (GMT 0)
60 pills
Posted 7/29/2018 1:29 AM (GMT 0)

Mister Mike said...
60 pills

Not sure how many I would need - as the protocols are generally m/w/f for two weeks, then two off
But it might be different for Alinia.


I’m gonna make a call tomorrow and find out the cost of the compounded Alinia.

Although I think one LLMD said Canada’s Alinia isn’t as good.
Posted 7/29/2018 1:32 AM (GMT 0)
I had mine compounded. Its funny when I google it on Good Pharma it says its like $600. Can't imagine how the compounding pharmacy can charge so much and have it paid by insurance...
Posted 7/29/2018 3:17 AM (GMT 0)
Herx and just be honest with dr is my opinion, my llmd gave protocol and said do it as I wanted too, and stay on the drugs that work till I plateau. I did not start yet and told him so about lauricidin and doxy working he said he disagreed with one pill doxy but understood the theory of why I am doing it and said as soon as I plateau to start the protocol. I agreed and so far no plateau and I am only up to 40 pellets so far and one doxy pill daily 100mg I vary times I take it one in am next afternoon and then eve then back to morn and repeat. Feeling so much improved and wow I feel I may beat this and just a few weeks ago I did not think I could. Fingers crossed !!! Key is you pay the doc to work with you and help and he will need that info to be aware if something does not work like it should. If he cares about you getting well he will support your decisions and developers a plan with you not dictate it to you. It is your life and you know your body. Good luck we love you and ty for all you do for us. You helped me so much I hope to meet you and give you a big hug.
Don
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