Fenbendazole is an interesting drug, it is being explored by many for bartonella treatment, it seems to be effective and selective in the treatment of many pathogens.
I have seen reference to concurrent use in protocols with disulfiram mentioned several times. It has a good safety profile, is cheap and readily available as Panacur C or Safeguard.
The protocol I am following is detailed in the Joe Tippens cancer story rocks. Someone here mentioned Tippens several month ago, I dug into it, there are many testimonials about the effectiveness of this treatment in cancer. The mode of action in against the cancer cell sounds similar to the mode of action desired in a bacterial efflux pump inhibitor, I was hoping it might function as an efflux pump inhibitor.
My treatment with fenbendazole is now in the fifth weekly cycle. I am tolerating it pretty well, the first three weeks, 3 days on followed by 4 off, I herxed almost to the next dosage, not debilitating type herx. Cycle 5 (I am extending days on in this cycle today is day 4 on, I'll see how I feel tomorrow) herx much lower, much better tolerated. I believe fenbendazole has greatly benefitted my damaged vision. I document my visual field monthly, since last test December 29, to today January 28 major improvement. Three opthamologists said I would have no or little visual perception in my right eye, going from little vision to something better is really good. I am also breathing much easier, neuropathy has improved.
My existing peripheral neuropathy in my hands and feet initially increased on fenbendazole, and it induced profound discomfort inside both eyes which is new to me, high but tolerable level. In this fifth week the neuropathy is much less pronounced, the eye discomfort is almost gone, I am really thankful and blessed to have come upon this, at least for me.
Fen not only treats nematode parasites but also readily crosses the BBB, one of the only anti parasitics that does so. Would not be surprised at all if the vision issues were directly a result of parasites
IMO every long term lyme patient should do a round of Fen
Have you done any rounds of fen? What effect did it have?
Was this the first anti-parasitic you’ve done or had you already done the others (i.e. Dr K protocol)?
Sep 2016: Dx CIRS from mold
Sep 2016: Labcorp WB: IGG pos 41, 66
Nov 2016: Igenix: IGG 39 Ind, 41++, 58+ / IGM 39 Ind, 41+, 45+, 58+
Dec 2016: DNA Connexions pos Borrelia burgdorferi, Ehrlichia chaffeensis
Sx of bart and/or babs since early childhood
Sep 2009: life altering sx started
Apr 2015: full blown sx; immune system off the cliff
Luke 1:37-For with God nothing shall be impossible.
Alinia - not much activity
Ivermectin - serious herx
DEC diethylcarbamazine ( I saw some improvement on this also, well tolerated)
I’ve also tried biltricide, alinia, pyrantel.
week 5 extended to an 8 day stretch, epic herx at end of stretch (I think I was on the edge of a real psych type event)
week 6-9 3 days on 4 off (tippens cancer protocol)
Weeks 8-9 added Alinia on the 4 days off
Fenbendazole has greatly improved my vision (no change to floaters though). I believe it has also helped my bart symptoms, seems to have cleared my thinking.
I had to discontinue minocycline, initially the Fen helped reduce the neuropathy in my hands and feet, it came roaring back, I read that long term use of minocycline could cause neuropathy so I discontinued it. I was on minocycline for about 60 weeks. I don't know if it was the fen with mino that set it off, but discontinuing mino has largely resolved the neuropathy.
I am also concurrently trialing roxithromycin, very good results. Will start a clean thread on that in a few weeks.
The thing that amazed me was that even after more than a year since my vision loss, with little change, significant improvement could still occur, over a few weeks of treatment with fen.
I also feel better, its been too long since I could say that.
Post Edited (carlnpa) : 3/4/2020 6:31:18 PM (GMT-7)
Give it a try, very low impact treatment.
My bart symptoms were largely neural/optic related. Initially floaters, than many floaters, optic neuritis, finally a Naion (optic edema) event. Neuropathy to hands and feet, brain fog, swollen lymph nodes.
The combo of minocycline/roxithromycin/fenbendazole was very effective for me.
https://www.mycancerstory.rocks/
There is a facebook group dedicated to cancer using this treatment that has 15000 + members. Many stories of this beating cancer, sad stories also. I have read over and over "should have started earlier".
I wish I understood what fenben was actually doing, re babs, bart, borellia. Some have used this to treat strongyloides and nematodes. It does cross the blood brain barrier. It is also antifungal.
It has helped my vision though and I can measure the change.
The cancer patients pair the fenben up with doxycycline commonly. Also some add metformin, valproate, melatonin, claritin. Sounds familiar doesn't it.
MD Anderson knew about this treatment 30 years ago, it was never pursued because there was no profit in it. It is actively being quashed today because there is no profit in a cure as opposed to endless treatment, exactly where we all are with Lyme.
Post Edited (carlnpa) : 3/6/2020 5:23:27 AM (GMT-7)
My neuropathy largely cleared up off minocycline. I was off minocycline for three weeks.
Unfortunately I had a major flare that largely concentrated in my eyes, brain fog, terrible shoulder pain.
I restarted minocycline about a week ago, symptoms have largely subsided and the visual has started to improve again.
I my have had a touch of covid.
I am still taking fenbendazole 3 on, 4 off, I tolerate it well, It's cheap and may have prophylactic benefits.
Post Edited (carlnpa) : 4/7/2020 6:41:05 AM (GMT-6)
BTW, I also have partial vision loss in my right eye due to "cotton-wool spot" caused by whoknowswhat, maybe lyme, maybe bart, maybe parasites, maybe the Ig subcutaneous infusion I was doing at the time (this is like IVIG except it's self-administered subcutaneously). I am encouraged by the improvement in your vision that you experienced.
Post Edited (paulieinct) : 4/19/2020 10:02:17 PM (GMT-6)
Lyme, bartonella, babesia, mycoplasma, EBV
Mold, MCAS, POTS, CFS/ME, HPA axis
Herbs, AmpCoil, DNRS, diet, nutrients, EOs
That cotton wool spot is probably an area of optic neuropathy.
Look into NAION, non arteritic anterior optic neuropathy.
I have this, it progressed to complete vision loss in my right eye.
Fenbendazole (3/4) with minocycline, roxithromycin, various other abx anthelmintics definitely improved my vision.
This past round I used DMSO as a solvent for my 222mg active dose, on friday. Saturday morning I woke up in a really really bad herx. I took my third dose this am, all three doses in DMSO with yogurt. Almost two weeks of low dose rifampin now. I had been on DEC for four day last week also, discontinued after saturday herx.
See Joe Tippens "mycancerstoryrocks", the 222mg dose is for all weights.
I feel very good this morning.
saraeli said...
Paulieinct - You mention a "cotton-wool spot." I have not heard this term, but I have central serous chorioretinopathy, which means that an area of swelling in my retina produces a grey blurry or blind spot in the central vision of my right eye. Is this what you have? I am curious because it's a rare condition that is associated with flares in cortisol, and only tenuously associated with Bartonella, so I'd love to connect with folks who might have insight and could swap research and what doctors have advised.
Saraeli: The retina specialist I consulted called it a cotton-wool spot, also used the term "infarct". He told me if it got worse, to go back to him. It has remained the same, altho it bothers me more and more. Like yours, it is a grey area in my field of vision, mine is a little below center. It is irregular in shape. The morning it happened, it first hit the left eye which resolved after a few hours. Then it hit the right eye and never resolved. My theory at the time was that it had something to do with Hizentra, which is the immunoglobulin product I was infusing twice a week. It is known to sometimes (rarely) cause clotting issues, particularly if you don't super-hydrate while infusing.
At this point I don't know what to do or who to consult.
Post Edited (paulieinct) : 4/21/2020 10:01:39 AM (GMT-6)
paulieinct said...
carlnpa: I am interested in trying the fenbendazole protocol for bartonella and/or any parasites I may have. Question: the 222 mg dose is intended for a ten lb. dog. As I am a 200 lb. human, how is this dose effective?
BTW, I also have partial vision loss in my right eye due to "cotton-wool spot" caused by whoknowswhat, maybe lyme, maybe bart, maybe parasites, maybe the Ig subcutaneous infusion I was doing at the time (this is like IVIG except it's self-administered subcutaneously). I am encouraged by the improvement in your vision that you experienced.
Hi paulieinct..... welcome to our community.
Do you currently have a LLMD or LLND treating you?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
carlnpa said...
Paulie
That cotton wool spot is probably an area of optic neuropathy.
Look into NAION, non arteritic anterior optic neuropathy.
I have this, it progressed to complete vision loss in my right eye.
Fenbendazole (3/4) with minocycline, roxithromycin, various other abx anthelmintics definitely improved my vision.
This past round I used DMSO as a solvent for my 222mg active dose, on friday. Saturday morning I woke up in a really really bad herx. I took my third dose this am, all three doses in DMSO with yogurt. Almost two weeks of low dose rifampin now. I had been on DEC for four day last week also, discontinued after saturday herx.
See Joe Tippens "mycancerstoryrocks", the 222mg dose is for all weights.
I feel very good this morning.
carlnpa: What is DEC?
Yes, I did read Joe Tippens' blog. Very interesting.
You said you had total blindness in your right eye. How much vision has returned? Do you attribute this primarily to fenbendazole?
BTW, I recently completed a full-dose (500 mg) disulfiram course lasting 3 mos. and six days. I will probably post my experience in a separate post. Unfortunately, there was no improvement in my blind spot.
Girlie said...
Hi paulieinct..... welcome to our community.
Do you currently have a LLMD or LLND treating you?
Hi Girlie: Thank you. Short version of loooooooong story: 72 yo male, treating for 12 years under two LLMD's, currently Dr. P in CT. I believe I've had Lyme since childhood, with multiple exposures over the years. crap hit the fan 12 years ago after I had 4 surgeries in one year which seemed to precipitate major neuro symptoms. My symptoms resemble MS with a little ALS and Parkinson's thrown in.
I did recently complete a course of disulfiram at full 500 mg dose for over 3 mos. I will describe my experiences - the good, the bad, and the ugly - in a separate post.
Hashimoto's, Lyme, Bartonella, Babesia, Mycoplasma, Post-Concussion Syndrome/migraines, CFS, EBV exposure, CIRS/MARcONS, adrenal fatigue, heavy metals, bipolar, parasites
Currently treating with NP thyroid, Lamictal, Saphris, Cymbalta, Propranolol, Rizatriptan, Amitriptyline, homeopathic remedies, herbs
1/13/19 zero vision right eye - everything was grey
I have been self administering monthly visual field tests. I had some improvement in light/dark but no visual acuity and vision holes, like looking through the stripes of a zebra.
With the fenbendazole there was a marked increase in the light vs dark and some visual acuity (like a keyhole) returned.
My best guess is that I am dealing with bartonella in the eyes.
Did the disulfiram do anything for your vision?
MA10
What would you guess the fenbendazole helped with?