Fenbendazole experience

Week 29 update, I am ending fenbendazole for the moment. Too much herx on higher Rifampin dosage, see below.

I have a new Lyme doc RR in Lancaster.

Unexpected news, she believes I have cleared Lyme due to a negative MDL Labs test, I hope.

Bart tests still positive by Galaxy Labs.

Awaiting results from babesia testing, Igenex.

Minocycline 100mg daily.

Increased Rifampin to 600mg daily for 21 days now (70 days at 300mg daily)

Roxithromycin 600mg daily for 65 days now (300-450 for months).

Alinia 1000mg daily 4 days on 3 off.

My vision has improved again in a jump.

Christian
Ivermectin was intense for me, I used horse paste for a week (with minocycline and erythromycin) and ended it with a hard herx. Only one round.
Fenbendazole builds up herx, 3 on 4 off is tolerable. I did an 9 day stretch and had the worst herx of my life. 3 days on peaks at day 5, so there is a bit of a lag. This one was a miracle for me with vision improvement. (with minocycline, roxithromycin, and now with rifampin in combo). See above for more details.
Alinia helps me, I feel better using it, very mild herx initially. Again, I have used it in combos or pulsed with the fenbendazole.
I had been trying to increase dosage of rifampin for months, I increased dosage when I could tolerate it.

Creek

My eyes felt swollen and full, discomfort inside, no external redness. I would say mid and posterior uveitis.

Itchiness in eyes, body malaise- I take at least one tablet of loratadine daily to control, I add oral benadryl later in the day as needed.

The fenben didn't cause itchy eyes, it caused discomfort internally in the eyes.

External eye irritation is also helped by MSM eye drops.

Each cycle of fenben resulted in a decrease in treatment discomfort, days 5/6 were noticeably less uncomfortable. Eye discomfort in general was way down by week 7/8

It sounds like you have eye issues? and are using fenben? experience?

Thanks for the additional information, carlnpa. Much appreciated!

It sounds like you have eye issues?
Not too bad. Vision is good but I have floaters, occasional light flares, dry eyes, and inability to focus. Some environmental allergies, but take chlorpheniramine and benedryl daily which seem to keep things mostly in check.

and are using fenben?
Naturopath recommended, hoping to make a dent in chronic infections. Bart in particular is acting up right now. Naturo's protocol is for 4g + DMSO five days on / two days off for eight weeks (subsequent weeks to be 4/3). Which seems awfully aggressive. Knowing how these things can go (!), I started with only 1/4g fenben, no DMSO, 3/4. Increased fenben a little every couple of days. Added DMSO week 2. Did 3/4, 4/3, 5/2. Not yet taking a full gram. Should start my fourth flight tonight.

Also taking some herbs. No abx.

experience?
Eyes went nuts within hours of first dose. Crazy itching and extreme irritation. No obvious redness inside or out. Also: headache, sore ears, face bone pain, neuro pain in hands and feet. Headache, etc, are all rather typical for me, and have been worse in the past, but the eye thing is brand new. All symptoms have receded some on my off days. But eyes are still quite irritated this round after two days off and I'm hesitant to restart the fenben/DMSO while they're this annoyed.

Your posts have been super encouraging. And the only place I've found info on fenben eye reactions. Based on your experience, I'm thinking I should continue, but maybe stay at just under 1g and go back to 4/3 for a couple weeks.

I'll be checking in with naturopath in a couple weeks, but I'm kind of her medical experiment, lol. Would be grateful for any thoughts or suggestions you might have.

carlnpa said...
Girlie
My last Western blot for lyme showed only band 41, no other bands reactive. Through MDL Labs.

Creek
When I mixed the fenben with DMSO as a solvent it increased the herx significantly over just using the fenben without DMSO. DMSO is probably increasing blood levels of fenben.

I suspect fenben may be functioning as an efflux pump inhibitor, meaning the mechanism the bacteria uses to successfully clear abx or herbs gets gummed up allowing the abx to damage the bacteria. I don't believe fenben is a stand alone treatment.

People treating cancer can take fenben daily for long periods of time with no reaction. Those with tick borne diseases start herxing after 2 or 3 days and get worse the longer fenben is used without a break.
.

Interesting series of posts - thank you for those - and wishing you well with ongoing treatment/experiments.

I would be a little cautious about interpreting the absence of bands on the western blot as evidence of clearing Lyme.

serology tests for most chronic infections are all plagued by issues.
these tests depend on and assume the proper functioning of the immune system.

however, the very organisms they are testing for are known to disrupt that same immune function.

those organisms that disrupt the immune response the most - unsurprisingly have the most issues with serology
Borrelia is at the top of this list!

for example, recent studies have shown that around 20% of people never produce ANY recognizable antibodies to borrelia at all - and yet they are infected - proven by culture and PCR.

Borrelia are some of the most complex bacteria on the planet ( they have the largest genome of any bacteria so far sequenced) and a good deal of this DNA is given over to producing different outer surface proteins.

these are the proteins it uses to make its outer cloak from and it changes them regularly to try to stay one step ahead of the immune system - which is trying to recognize it and make more cells and antibodies that can chase it down - its a kind of microscopic arms race.

for this reason, it's common to detect IgM antibodies in people who have had Lyme for years ( when you would normally expect only IgG) but the immune system sees the rotating series of outer surface proteins as a new threat and so makes IgM antibodies to it.

it is also one of the reasons for people to have both negative and positive tests over time.

“Girlie
My last Western blot for lyme showed only band 41, no other bands reactive. Through MDL Labs.“

Band 41 represents the flagella of a spirochete - lyme is a spirochete -

Also - a negative WB doesn’t rule out lyme.

Hi Carl - I have been reading around this subject and all the various other differential diagnoses surrounding Chronic Lyme, Gut issues, Parasites, Mold, etc etc for around 5 years now, but this is pretty much the first I have come across this particular drug.

at this point, I believe I have Lyme ( positive test ) with Bart ( no confirming test at present but symptom pattern and treatment response highly suggestive) - with potentially Bart being the hardest to treat.

I have heard of people using Ivermectin which is another anti-helminth type drug - mostly used in veterinary practice but seems to have a wider activity than that.

there is also the discussion in another thread in this forum on a recent paper showing that several drugs from the same class of Azole Drugs as Fenbendazole have good activity against the stationary phase ( persister cell) Bartonella Henslae.

The paper was highlighting that the current recognized Bart antibiotics tend to be good at attacking growing phase Bart - but poor at killing persister cells and that this could well be the reason for so many treatment failures.
https://www.healingwell.com/community/default.aspx?f=30&m=4213020#gsc.tab=0

the researchers tested a large number of already FDA approved drugs with a view to finding candidates that could work in people.

there are some interesting compounds on the list - but as per the discussion in that thread - these trials were in-vitro - and so to be good oral drug candidates in people we have to look into the pharmacokinetics more deeply.
for instance - some of these anti helminth drugs stay in the gut where needed most and don't tend to cross the gut membrane well - so getting blood plasma levels up to the effective dose may be a major hurdle.

that said we also don't know what concentrations are useful in humans with Bart - so like so many things with Lyme it remains a grey area.

your experiences are interesting for sure -
hopefully, these researchers will carry on in the direction they are going with animal trials in the near future also.

BTW the study mentioned above also tested Berberine and found it to have reasonable activity against Bart persisters.
I am v sensitive to berberine containing herbs and have massive herx like reaction from anything over around 1ml of Mahonia Aquafollium tincture per day

Creekee said...


Thanks for the berberine suggestion. Do you have a favorite? I'm currently doing some core Buhner herbs plus CSA (crytolepis, sida acuta, alchornea) and houttuynia. Hoping to make a dent in any babs and bart. I'll definitely look into adding a berberine.
..

i am currently on a very similar protocol after 12 months of abx on and off helped but did not get me where i need to be - and started to give me liver issues so I had to break.

currently doing an expanded Lyme protocol from Buhner's last book - for Lyme

then - CSA and Teasel and Houttuynia with Mahonia (potent Berberine herb) for co-infections.
( am v sensitive to this combination so have been building up slowly - now on 3ml 4x a day )

I am making slow but steady progress on this approach together with Keto diet, exercise, and a focus on sleep.

I also have a similar history - and was once bitten by a feral cat on a farm - well a kitten really but it turned into a demon-possessed razor fanged fur devil the instant I picked it up!

I don't remember getting ill at the time in any major way - but i do remember having some fatigue for no good reason. Also adopted stray cats one of which had clear neurological issues and would bite and scratch.

Post Edited (Garzie) : 8/29/2020 3:28:52 AM (GMT-6)

carlnpa said...


Garzie
You were probably exposed to something that brought the latent bugs out of hibernation. I suspect many of us kept things in remission, particularly bart and ebv, and can put them back into remission again with time and the right tools.

you may well be right there.
I think it was likely chronic work-related stress and maybe some kind of viral infection that finally tipped it over the edge into full-on illness.
but there were signs before this that went undiagnosed
thyroid problems
gall bladder disease

good luck with your trials!

Thanks for the updates, carlnpa and Garzie. How interesting that we were all impacted by a long-ago kitty encounter. Garzie, I already had mono symptoms when I was scratched, but I did get a huge increase in general body pain with the CSD. Very sore to the touch. I remember taking a shower just about killed me.

Carl: 29 days with no break -- wow. Are you planning to just keep going? Did you restart the artemisinin? Am also wondering what you do to protect yourself in that tick endemic area? What about pets?

Garzie: have you checked for mold/biotoxin illness? My LLMD sent me in that direction when abx helped, but didn't fix me. Also re interesting possible treatments for bart, have you read anything about gallium nitrate?

Apologies for the tardy response. Finished week 7 of fenben/DMSO with some eye irritation, but not nearly as intense as the first few weeks. Inched dose up to about 300mg and did a five-day run. Unfortunately, I got sidetracked with some other issue. We've been mostly staying in these past few months but went out to meet a potential new doctor last week. Woke up the next day feeling extremely crappy. Not sure if the drs office has mold (we were there for two hours) or if I'm feeling the effect of smoke in the air (it's been visible for several weeks here, although we don't smell it). I've put everything on hold while I do a few days of cholysteramine and hope to get past this.

Also: had a chance to talk briefly with my NP who says she is seeing really good response in patients doing the 4g fenbendazole for 8 weeks 5/2. I think she was disappointed that I hadn't yet worked up to 4g. I am amazed that some are able to start at that high dose.

I just read a few posts with Berberine mentioned.

I’ve not heard of it for lyme and CO’s

My husband takes it for diabetes and it works to lower his blood sugars.
But now I’m wondering if he’s going to stir up lyme and CO’s.

Buhner mentions berberine in a paper on standardization of herbs:

"Berberine, a strong plant antibacterial, is very active against a large number of resistant and non-resistant bacterial organisms. It is considerably more active, however, due to the presence of another constituent in goldenseal (and other berberine-containing plants), 5'-methoxyhydnocarpin. The constituent 5'-MHC is in fact a multidrug pump inhibitor. It reduces or eliminates the ability of resistant staphylococcus bacteria to eject, from inside its cellular membrane, antibiotic substances that might harm them. ...

"In response to plant bacteria generating resistance to berberine (millennia ago), the plants created a new chemical, 5'-MHC, which has no known function other than to act as an efflux inhibitor, enabling the berberine to remain effective."

More here:

https://www.stephenharrodbuhner.com/wp-content/uploads/2019/03/standardizationrant.txt.pdf

Post Edited (Creekee) : 9/14/2020 10:30:09 PM (GMT-6)

I'm posting an update to my fenbendazole trials as I just got the results from the monthly Comprehensive Metabolic Panel.
My lymphocytes and monocytes are down, neutrophils up. Everything else no change, which is good, nothing even close to out of range.
I "felt" another change in my body recently, a long term low grade tooth issue went away.
Visual improvement continues. No change to floaters.
Two weeks ago my spleen started bothering me, enlarged again (this has been a multi year issue for me), as of today has mostly resolved. Had an abdominal ultrasound waiting on results.

I did 51 days of 222mg fenbendazole with no break. Been off for 8 days. Plan to restart.
roxithromycin - 600mg daily, day 171
minocycline - 200mg daily, day 91
rifampin - 900 mg 22 days, 600mg days 99
plaquenil - 400mg daily, day 45
enteric oregano - 300mg active carvacrol, day 11 - feel this in eyes
succinic acid (amber acid)- 450mg active day 4 - taking for liver protection, visual improvement

I plan to at least trial methylene blue.

Post Edited (carlnpa) : 10/13/2020 7:47:13 AM (GMT-6)