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For Those That Are Treating Bartonella (Or Have in the Past)

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Posted 5/1/2018 8:23 PM (GMT 0)
I know there are a few others on the forum that are currently treating bartonella and I am just curious how things are going for you.

I am approaching a full month of treatment and am pretty down right now.

Last week I went to Vegas for a business trip and was feeling great. In the mornings I still felt crappy, but by mid morning my mind was clear and I had pretty good energy. I had lots of aches and pains, but my mind was clear and I wasnt dizzy for what seems like ever. It was so exciting and I just enjoyed the feeling.

Then I came home and spent the weekend moving out of my apartment and into a house I just bought. Again, my mind was clear and I was feeling pretty energetic.

Then, on monday, I came into work and felt crappy all day. Now today I still feel crappy.

Does bartonella herx in cycles? Like will I have a couple bad weeks then some good days in cycles until the good days outnumber the bad?

I just feel so down. The good days made me realize just how awful I feel. I can't keep living like this. It's horrible. I feel trapped in my own brain.

I remember on Saturday I went to Lowe's with my mom and was so happy because I could just focus on everything and didn't feel overwhelmed. Now I tried going again last night and felt the typical dizziness and just completely overwhelmed and couldn't even concentrate on the products.

Hopefully I start having more days like that... I haven't felt that good in years. Just really sad about all of this. Thought I was finally turning a corner.
Posted 5/1/2018 8:31 PM (GMT 0)
yeah, i had a bad weekend with it.

Friday i had a strong herx. originally i thought it was from trying nutramedix stevia the previous day. friday i woke up bad deep headaches, body aches all over, and fatigue. it then started to go away saturday.

then saturday night, i had crippling back pain in my flank area (kidney). I got freaked out by this and went for blood work sunday morning. some of my levels came back slightly elevated. so, i am taking antibiotic break right now.

very disappointed. i was going into 5th week of rifabutin.

Post Edited (sierraDon) : 5/1/2018 2:34:41 PM (GMT-6)

Posted 5/1/2018 8:56 PM (GMT 0)
For what it's worth, my wife is deeply infected with Bart. She had almost "instant" relief with IV Rifampin and no herxing for the last 4 months, but out of pocket costs were severe. She recently switched to orals since they were covered by our insurance and they took a real toll - incredible herxing within a week.

Our doctor said the IV commonly is the best route for Bart as it's easier on the system and causes less herxing. Just a data point for you as something to consider, especially if you have to try and work with this horrible thing.

There is quite a bit of work to get setup to do IV but once you do you may find that the ticket to feeling better sooner (everyone is different of course).
Posted 5/1/2018 8:58 PM (GMT 0)

sierraDon said...
yeah, i had a bad weekend with it.

Friday i had a strong herx. originally i thought it was from trying nutramedix stevia the previous day. friday i woke up bad deep headaches, body aches all over, and fatigue. it then started to go away saturday.

then saturday night, i had crippling back pain in my flank area (kidney). I got freaked out by this and went for blood work sunday morning. some of my levels came back slightly elevated. so, i am taking antibiotic break right now.

very disappointed. i was going into 5th week of rifabutin.

I have had lots of back pain too. I wont get my blood test until the end of this month unfortunately.

I am going to keep battling. I was taking zithromax with it but my LLMD switched me to Biaxin. I am waiting til the zith has some more time to clear my system before I start that.

So you have had some better days though? They come and go? I hope I have some ahead of me..
Posted 5/1/2018 9:59 PM (GMT 0)
Nich - I treated Bart for over a year ...and then switched to Babesia....

And I'm not sure what I have leftover - what it is - bart or babs...or both.

I'm thinking I need to hit bart again...now that babesia has been knocked back.


I've always had flares...even prior to treatment - that weren't herxes...most days - a few hours where my symptoms flare.

Difficult for me to determine herxing from regular flares....

I had a really good day in February - coming home from the J Clinic. Even with the stress of airports/flying...etc...I was pretty much symptom free the entire day/evening. I was on a couple weeks off of meds after doing two months of Bart treatment with Rifampin.
The the J clinic had me start babesia treatment and I haven't had a good day like that since.
I 'm anxious to get back on bart treatment...
Posted 5/1/2018 10:05 PM (GMT 0)
I am not sure if i would say any days were significantly better on the rifabutin.

i had some days where i thought my muscle twitching was less. i was hopeful that i would get some improvement say in 8 or 12 weeks into, of course hoping for big improvement. but didn't really see that with only 4-5 weeks in.

i did feel like i was getting in a routine with the medications, and didn't really have bad herxing since i started treatment 4 months ago, so this was the first pitfall.

so, hopefully back on treatment later this week. probably redoin blood work again.

good luck with it, if your back pain persists and you are not sure, i wouldn't mess around and get blood test to be sure.
Posted 5/1/2018 10:11 PM (GMT 0)
I’m currently on day 12 of Rifampin and Minocycline - I started Mino about 2-3 weeks prior to the Rifampin and the first week of rifampin I only took 1 300mg pill. So far I’m tolerating it pretty well, I only notice some
Fatigue and have had maybe 2 brief instances where I felt empty/down/depressed. I have to say I feel like the supplements are absolutely key to dealing with it. I know exactly what you mean when you say you feel trapped in your own brain - I’ve found that NAC, glutathione, circumin plus clonazepam make an enormous difference In dealing with it. I also take magnesium, vitamin B complex, L-theanine, 5-htp, methyl b12, and omega 3. Perhaps you can add in something to your regiment if you discuss with your LLmD? Hang in there, and make sure you get some exercise if possible.
Posted 5/2/2018 1:02 AM (GMT 0)
I've been treating bart herbally with Buhner's protocol. I started supportive herbs in June and antimicrobials in September, I think. I had no improvement until I'd been on antimicrobials about 3-4 weeks.

Overall, improvements have been slow and easily lost. Progress has been occasionally up and mostly down. Herxing was pretty constant from December up until 3 weeks ago when I stopped most of my treatment and slowly restarted at reduced dosages.

In spite of still feeling bad a lot, compared to a year and a half ago when I first left my moldy home and workplace, I have fewer symptoms overall.
Posted 5/2/2018 2:14 AM (GMT 0)
I'm 3 1/2 months in to bart treatment with the first 2 months on bactrim and doxy. Progress was slow and my bart symptoms just waxed and waned. Then we swapped doxy for rifampin and almost immediately I felt improvement, but then started a week long herx. That faded and then I really felt like rifampin was hitting the bart well, as I was having more good days and the bad were not as bad. Then one of my liver enzymes went up after just 4-5 weeks on it, so we dropped it. I was pretty bummed about that.

My LLMD added azithromycin, so now that is paired with the bactrim. Almost immediately my symptoms flared to the worst ever and I have been struggling with a another 2 week long herx. The zith seemed to bring on symptoms I haven't felt for months, such as leg fatigue, muscle cramping and twitching that had been gone for months. I just now seem to be coming out of that, as today was the best day I've had in over 2 weeks. I have to assume the zith is really hitting something hard.

Bart is frustrating and as I have read, hard to get rid of. I treated Lyme for only about 3 - 3 1/2 months and quickly dispatched of most of the strange symptoms it was causing. Only those that seem related specifically to bart remained (painful feet, shin pain, etc.).
Posted 5/2/2018 2:28 PM (GMT 0)
Thank you all so much! Hopefully we can keep this thread going and post updates!

Today my back is absolutely killing me, but its lower right near the spine. My chiropractor is worried that it could be a herniated disk because of the pain. It radiates from the lower back spine area straight down to my tail bone. It's a lot worse when sitting and then standing up.

Girlie - I wonder if that good day was the comfort of knowing you were now in good hands? That's interesting.. or maybe because your bart treatment was starting to really take hold?

Solaris - I am taking NAC now and thinking about adding in curcumin. I added in cordyceps a few weeks ago and thought that may have been making me feel better, but now that I am down again I doubt it was the piece of the puzzle I was looking for, however, I'm continuing to take it. I've heard lots of good things about curcumin!

WalkingByFaith - I forgot to respond to your last post on my other thread. My work environment is a brand new building and there is no mold that I can see or imagine in the building. The house I moved into doesn't have any visible mold either.

Mudshark - Since I have been on Rifampin my foot pain has gotten a lot better. Still painful at times during the day when standing a lot, but not bad in the morning like it used to be.
Posted 5/2/2018 3:52 PM (GMT 0)

NicHostetler said...


Girlie - I wonder if that good day was the comfort of knowing you were now in good hands? That's interesting.. or maybe because your bart treatment was starting to really take hold?


Possibly - but I don't think so. I've felt confident before with protocols/treatment - this was literally the best day I've had since treating.
Posted 5/2/2018 5:55 PM (GMT 0)
Dr P in Ct has/had bart.....left his practice for over a year....had alot of back pain...told me he took every drug you can imagine, iv too, including several toxic ones that a LLMD would never prescribe...while it got him back on his feet and back to work, he is still infected...i think he knows more about bart than anyone other than the galaxy guy (who he is working with now to find a "cure")...dont think there really is a cure, other than getting the bug load down, so that youre immune system takes it from there...he usually doesnt use the big hitters like rifampin, preferring a tetra based pulsing protocol, to gradually whittle it down...he turned me onto monolaurin which is bringing reticulyte number down (baby red blood cells) and helping bart stomach gastritis

believes that bart is the major player, which is in conflict with dr J in dc who says babesia...who really knows to be honest, there is such an overlap...
Posted 5/2/2018 6:12 PM (GMT 0)
That's interesting... I think babesia is worse than bart... But if you get bartonella and it starts getting entrenched, it's really hard to do any thing to get rid of it, and it becomes the dominant infection, I think.

So monolaurin is good for bartonella? I though it was only good for viruses. I didn't think rifampin helped me. What else does Dr P do for bartonella?

Right now I'm doing herbs and cold laser therapy, like I said in another thread. The cold laser therapy really seems to be hitting the Lyme, but I'm not at all sure that it is doing anything to kill the bartonella.
Posted 5/2/2018 6:25 PM (GMT 0)
wilco,

What brand/dosage of Monolaurin do you take?

thanks
Posted 5/2/2018 6:26 PM (GMT 0)
dbwilco, how long have you been taking monolaurin? I have been taking 1 scoop a day for almost 3 months and it seems to be doing really well for me although I keep thinking it will stop working for some reason.

I have other options but the monolaurin seems to work the best. my symptoms always line up more with bartonella than lyme but I haven't tested positive for either one.
Posted 5/2/2018 6:36 PM (GMT 0)
I actually had been doing the monolauren for like a month at high dosages right before having some good days so I wonder if that had anything to do with my good days.. I started it back up last night. I didn't take it while in Vegas for work because it gave me headaches from time to time that I didn't want to deal with during the conference.
Posted 5/2/2018 6:53 PM (GMT 0)
yes, my symptoms were worse for about the first 6 weeks on monolaurin and then they got better. I never increased the dose past 1 scoop but i added some other herbs that i used before the monolaurin and started to mildly herx again. My symptoms are almost gone but it seems too good to be true. I keep expecting it to fail me.
Posted 5/2/2018 7:14 PM (GMT 0)
about monoloaurin:


"Evaluation of 23 naturally derived compounds tested against spirochetes, rounded forms, and biofilm, demonstrated that several of them are effective against spirochetes of Borrelia burgdorferi sensu stricto and Borrelia garinii. They included polyphenols and fatty acids that showed bacteriostatic and bactericidal effects against spirochetes with the MIC values ranging from 50 to 250 µg/ml, and the MBC values between 100 and 250 µg/ml. We also observed that, although they could not eliminate rounded forms in 90–99%, a few of them were potent enough to induce their death in 50%. These compounds included hydroxytyrosol, 10-HAD (cis-2-decenoic acid), baicalein and monolaurin at their MBC50 values ranging from 300 to 500 µg/ml. In addition, flavones such as baicalein and luteolin, as well as fatty acids such as monolaurin and 10-HAD, used at concentrations 200–500 µg/ml could reduce biofilm-like colonies formed by Borrelia burgdorferi sensu stricto by 30–60%. However, only baicalein and monolaurin applied at the same concentrations were effective in reducing biofilm formed by Borrelia garinii by approximately 40–60%"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4971593/
Posted 5/2/2018 7:19 PM (GMT 0)
https://www.facebook.com/lymebook/videos/737578606447521/

dr p talking about bart treatment- about 5 minutes in

his videos are great by the way

i use inspired nutrition and take 1 scoop 3x a day...your symptoms gets worse initally (my stomach did), until it fixed my stomach
Posted 5/2/2018 7:41 PM (GMT 0)

elvin said...
yes, my symptoms were worse for about the first 6 weeks on monolaurin and then they got better. I never increased the dose past 1 scoop but i added some other herbs that i used before the monolaurin and started to mildly herx again. My symptoms are almost gone but it seems too good to be true. I keep expecting it to fail me.

I am at 40-50 pellets which is like 3/4 of a scoop once a day. I should keep pushing my way up.

I'll try to get to a full scoop by the weekend. Has this helped with dizzyness and brain fog at all?
Posted 5/2/2018 9:11 PM (GMT 0)
It seems like at some point it becomes easier to up the dose but I feel pretty comfortable at 1 scoop. I will eventually add more but I like the idea of adding other herbs to hit it in several ways. I have just added apple cider vinegar pills to the mix and it's surprisingly strong. Made me really sleepy and somewhat itchy with slight neck pain, but it only lasted about 3-4 hours.
Posted 5/3/2018 11:51 AM (GMT 0)
just an FYI, i am trying the Inspired Nutrition brand. i wanted to mention i tried half a scoop of that, with a half scoop of Lauricidin this morning. no issue it seems transitioning from one brand to another. will try a full scoop tonight of Inspired Nutrition.

also i resumed antibiotics after my 3.5 day break. i can say that my muscle twitching increased during the break, and decreased now that i am back on rifabutin.
Posted 5/3/2018 12:00 PM (GMT 0)
This whole week I have been absolutly exhausted all day. By 2PM at work I can barely keep my eyes open and those last few hours are a killer. Not sure if its the Rifampin or lauricidin.

I am going to add in Biaxin this weekend.
Posted 5/3/2018 12:07 PM (GMT 0)
Good luck with the transition to Biaxin.

I haven't noticed the monolaurin to make me tired, i continued monolaurin and oil of oregano during my antibitioc break. i do notice some tiredness/fatigue after taking Rifabutin in the AM and PM. now i am on Minocin-Rifabutin-Zithro
Posted 5/3/2018 1:38 PM (GMT 0)

sierraDon said...
Good luck with the transition to Biaxin.

I haven't noticed the monolaurin to make me tired, i continued monolaurin and oil of oregano during my antibitioc break. i do notice some tiredness/fatigue after taking Rifabutin in the AM and PM. now i am on Minocin-Rifabutin-Zithro

I was originally taking zith with my rifampin but my ears kept plugging up. My LLMD thought that was a side effect of the zith so that's why I'm switching that out with biaxin.

The last time I took biaxin (last spring) I think I had lots of improvements. Fingers crossed.
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