If you remember we chatted ages ago about visual problems and Bart/Lyme. I am going to try the Tippens protocol. I am on Clarithromycin and Mino and Rifampin. So I just wanted to feed back info that might be useful to you. You mentioned floaters and then worsening floaters. Well I am trying out a 3 month protocol which is meant to have good improvement for floaters. It was a clinical trial of sorts. I came across it on YouTube an ophthalmologist (Doctor Eye Health) was going on about it. So I am giving it a try. It is very easy to do. It is just eating 1, 2 or 3 slices of fresh pineapple a day for 3 months. As you know pineapple contains Bromelaine. So the candidates who took the high dosage of 300mg (3 slices) saw a 75% improvement in their floaters. Those who took the medium dosage 200mg (2 slices) had a 66% improvement and the Low dosage 100mg saw a 55% improvement. Also try to discard as little of the core as possible because that is supposed to be the best bit, it usually gets thrown away because it's a bit woody. Good luck with everything.
Mr carlnpa, how strange things are. I was hearing about your adventure into Fenbendazole in a FB Bartonella forum but didn't realize it was you! If you remember we chatted ages ago about visual problems and Bart/Lyme. I am going to try the Tippens protocol. I am on Clarithromycin and Mino and Rifampin. So I just wanted to feed back info that might be useful to you. You mentioned floaters and then worsening floaters. Well I am trying out a 3 month protocol which is meant to have good improvement for floaters. It was a clinical trial of sorts. I came across it on YouTube an ophthalmologist (Doctor Eye Health) was going on about it. So I am giving it a try. It is very easy to do. It is just eating 1, 2 or 3 slices of fresh pineapple a day for 3 months. As you know pineapple contains Bromelaine. So the candidates who took the high dosage of 300mg (3 slices) saw a 75% improvement in their floaters. Those who took the medium dosage 200mg (2 slices) had a 66% improvement and the Low dosage 100mg saw a 55% improvement. Also try to discard as little of the core as possible because that is supposed to be the best bit, it usually gets thrown away because it's a bit woody. Good luck with everything.
If you remember we chatted ages ago about visual problems and Bart/Lyme. I am going to try the Tippens protocol. I am on Clarithromycin and Mino and Rifampin. So I just wanted to feed back info that might be useful to you. You mentioned floaters and then worsening floaters. Well I am trying out a 3 month protocol which is meant to have good improvement for floaters. It was a clinical trial of sorts. I came across it on YouTube an ophthalmologist (Doctor Eye Health) was going on about it. So I am giving it a try. It is very easy to do. It is just eating 1, 2 or 3 slices of fresh pineapple a day for 3 months. As you know pineapple contains Bromelaine. So the candidates who took the high dosage of 300mg (3 slices) saw a 75% improvement in their floaters. Those who took the medium dosage 200mg (2 slices) had a 66% improvement and the Low dosage 100mg saw a 55% improvement. Also try to discard as little of the core as possible because that is supposed to be the best bit, it usually gets thrown away because it's a bit woody. Good luck with everything.
Get
I remember the conversation, I wish we had more information on the fenbendazole mode of action towards cancer certainly, or lyme/bart/babesia. We still need more feedback on this in relation to the tick borne diseases. It is clearing out the cancers for some to the no evidence of disease level, maybe our bugs won't like it either.
Edit - sorry I missed your question from November, unfortunately, those of us with vision loss are a large group. 6000 reported cases of just NAION in the US annually. With the knowledge I believe I currently have, many papers CDC stats etc - I believe there is actually an epidemic of sorts related to vision loss and tick borne diseases. Unrecognized by the medical community, such a shame.
It is doing something good for many, good luck with your experiment. Let us know if anything good or interesting occurs.
I expect your current combo with the pulsed fen 3/4 will get your attention. The gain has appeared in the off days 4/5/6. I actually "feel" this in the eyes, scared me initially, I welcome it now. I believe using an anthelmintic like alinia or DEC on the 4 off days may be beneficial.
Using DMSO as a solvent kicks this up another level. It takes about 1ml DMSO to dissolve the 1 gram (222mg active). Do not do this initially, too much herx. Good luck.
Link to a forum on degenerative vitreous below, it mentions the bromelain protocol.
Thanks
https://www.tapatalk.com/groups/floatertalk/
I remember the conversation, I wish we had more information on the fenbendazole mode of action towards cancer certainly, or lyme/bart/babesia. We still need more feedback on this in relation to the tick borne diseases. It is clearing out the cancers for some to the no evidence of disease level, maybe our bugs won't like it either.
Edit - sorry I missed your question from November, unfortunately, those of us with vision loss are a large group. 6000 reported cases of just NAION in the US annually. With the knowledge I believe I currently have, many papers CDC stats etc - I believe there is actually an epidemic of sorts related to vision loss and tick borne diseases. Unrecognized by the medical community, such a shame.
It is doing something good for many, good luck with your experiment. Let us know if anything good or interesting occurs.
I expect your current combo with the pulsed fen 3/4 will get your attention. The gain has appeared in the off days 4/5/6. I actually "feel" this in the eyes, scared me initially, I welcome it now. I believe using an anthelmintic like alinia or DEC on the 4 off days may be beneficial.
Using DMSO as a solvent kicks this up another level. It takes about 1ml DMSO to dissolve the 1 gram (222mg active). Do not do this initially, too much herx. Good luck.
Link to a forum on degenerative vitreous below, it mentions the bromelain protocol.
Thanks
https://www.tapatalk.com/groups/floatertalk/
Post Edited (carlnpa) : 4/20/2020 5:52:04 PM (GMT-6)
carlnpa said...
Did the disulfiram do anything for your vision?
Unfortunately, no.
Cig
Roxithromycin
https://www.ncbi.nlm.nih.gov/pubmed/7782115
"In an in vivo, non-randomised, open, prospective pilot study it was found that of 17 patients with confirmed late Lyme borreliosis (stage II/III), treated with combined roxithromycin (300 mg b.i.d.) and co-trimoxazole for 5 weeks, 13 (76%) recovered completely by the end of treatment, and four continued to have symptoms on follow-up at 6 and 12 months. This success rate is similar to that seen with i.v. penicillin and ceftriaxone. It appears that the reduced motility of B. burgdorferi makes the pathogen more accessible to the immune system."
Fenbendazole
Every cycle of 3 on 4 off results in improved vision around day 4/6 of cycle. I still slightly feel some discomfort in my eyes the days I am taking this. Cancer patients report feeling discomfort while taking this at the site of their cancer. Seems very specific to pathogen location, I don't think it's psychosomatic. I believe the rifampin in causing some visual issues also.
The fenbendazole is a miracle for many cancer patients- MANY unbelievable stories of beating terminal cancers with this treatment. see "mycancerstoryrocks"
Roxithromycin
https://www.ncbi.nlm.nih.gov/pubmed/7782115
"In an in vivo, non-randomised, open, prospective pilot study it was found that of 17 patients with confirmed late Lyme borreliosis (stage II/III), treated with combined roxithromycin (300 mg b.i.d.) and co-trimoxazole for 5 weeks, 13 (76%) recovered completely by the end of treatment, and four continued to have symptoms on follow-up at 6 and 12 months. This success rate is similar to that seen with i.v. penicillin and ceftriaxone. It appears that the reduced motility of B. burgdorferi makes the pathogen more accessible to the immune system."
Fenbendazole
Every cycle of 3 on 4 off results in improved vision around day 4/6 of cycle. I still slightly feel some discomfort in my eyes the days I am taking this. Cancer patients report feeling discomfort while taking this at the site of their cancer. Seems very specific to pathogen location, I don't think it's psychosomatic. I believe the rifampin in causing some visual issues also.
The fenbendazole is a miracle for many cancer patients- MANY unbelievable stories of beating terminal cancers with this treatment. see "mycancerstoryrocks"
Fenbendazole 24 week update.
Pulsed 3 days on, 4 off.
Taking with 300mg rifampin 1 x daily trying to get to 2 x daily.
Roxithromycin 2 x 300 daily, this is the full lyme therapeutic dose, increased from single 300 to 300 bid on good blood tests 30 days ago.
Decreased minocycline from 100 bid to once daily, mino is causing me peripheral neuropathy, 100 is noticeable but tolerable and not increasing.
I added Montana Farmacy elderberry extract, I really like this, one of the few things I take that makes me feel better. Also added capsule elderberry extract Horbaach.
I take a bunch of other supplements including mixed tocopherol E, cod liver oil, 10,000i u D, 120mg lutein with zeaxanthin, NAC 1 gram, multi B etc.
My vision continues to improve with each round of fenbendazole, my retina specialist says he has never seen a recovery like mine. He says he has seen 100's with Naion, none of those with complete loss like I had made a come back.
Pulsed 3 days on, 4 off.
Taking with 300mg rifampin 1 x daily trying to get to 2 x daily.
Roxithromycin 2 x 300 daily, this is the full lyme therapeutic dose, increased from single 300 to 300 bid on good blood tests 30 days ago.
Decreased minocycline from 100 bid to once daily, mino is causing me peripheral neuropathy, 100 is noticeable but tolerable and not increasing.
I added Montana Farmacy elderberry extract, I really like this, one of the few things I take that makes me feel better. Also added capsule elderberry extract Horbaach.
I take a bunch of other supplements including mixed tocopherol E, cod liver oil, 10,000i u D, 120mg lutein with zeaxanthin, NAC 1 gram, multi B etc.
My vision continues to improve with each round of fenbendazole, my retina specialist says he has never seen a recovery like mine. He says he has seen 100's with Naion, none of those with complete loss like I had made a come back.
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.
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.
Glad to hear you've had more vision improvement, carlnpa.
Have you tried Ivermectin? If so, how would you compare it with Alinia and Fenbendazole?
How do you determine when to increase your dosages like for Rifampin? Do you wait to increase until you've seen some improvement?
"And inasmuch as it is appointed for men to die once and after this comes judgment." Hebrews 9:27
"Jesus said to him, "I am the way, and the truth, and the life; no one comes to the Father, but through Me." John 14:6
Have you tried Ivermectin? If so, how would you compare it with Alinia and Fenbendazole?
How do you determine when to increase your dosages like for Rifampin? Do you wait to increase until you've seen some improvement?
"And inasmuch as it is appointed for men to die once and after this comes judgment." Hebrews 9:27
"Jesus said to him, "I am the way, and the truth, and the life; no one comes to the Father, but through Me." John 14:6
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.
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.
Carlnpa --
Thank you for sharing your fenben story. And congrats on the vision improvement! Couple of questions:
Did the fenben-caused eye irritation ever include itchiness?
And did the irritation subside completely during your four-day no-fenben breaks?
I'm following your lead here and about to start my fourth flight of fenben. Don't want to let this eye irritation get much worse.
Thank you for sharing your fenben story. And congrats on the vision improvement! Couple of questions:
Did the fenben-caused eye irritation ever include itchiness?
And did the irritation subside completely during your four-day no-fenben breaks?
I'm following your lead here and about to start my fourth flight of fenben. Don't want to let this eye irritation get much worse.
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?
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?
carlnpa said...
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.
What type of test showed you cleared lyme?
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
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.
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.
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.
I did test positive for babesia through Igenix Fish.
My doc wants me back on fenben 3/4, and we are adding plaquenil now.
The "my cancer story rocks" recommendation for fenben cycling for cancer was changed in June 2020 to continuous daily at 222mg active.
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.
I did test positive for babesia through Igenix Fish.
My doc wants me back on fenben 3/4, and we are adding plaquenil now.
The "my cancer story rocks" recommendation for fenben cycling for cancer was changed in June 2020 to continuous daily at 222mg active.
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.
carlnpa --
Thanks for the additional input. I had looked up the mechanism of fenbendazole, but "by binding to tubulin and disrupting the tubulin microtubule equilibrium" left me pretty confused. I'm absorbing your efflux pump inhibitor theory a little better.
Have you been having babesia symptoms? How long have you been dealing with infections overall? How are you feeling since restarting the fenben?
I've continued with the fenben/DMSO intro. Had a better week last week, which was week 4. Eye irritation was not nearly as bad. I increased fenben dose a little on day 2 this week (week 5) and had more irritation today, day 3. But not as bad as the first three weeks. Think I'll continue like this, doing 4/3 and increasing dose slightly when symptoms recede.
I may end up adding abx down the road, but would like to see how the fenben/DMSO/herbs do. I did two years of abx and had a pretty rough time. Especially with doxy and mino. I've now done about two years of Buhner herbs, post abx, and have seen some slow general improvement. Although bart symptoms continue to plague me.
May have shot myself in the foot by adopting a stray cat a couple years ago.
:-/
Thanks for the additional input. I had looked up the mechanism of fenbendazole, but "by binding to tubulin and disrupting the tubulin microtubule equilibrium" left me pretty confused. I'm absorbing your efflux pump inhibitor theory a little better.
Have you been having babesia symptoms? How long have you been dealing with infections overall? How are you feeling since restarting the fenben?
I've continued with the fenben/DMSO intro. Had a better week last week, which was week 4. Eye irritation was not nearly as bad. I increased fenben dose a little on day 2 this week (week 5) and had more irritation today, day 3. But not as bad as the first three weeks. Think I'll continue like this, doing 4/3 and increasing dose slightly when symptoms recede.
I may end up adding abx down the road, but would like to see how the fenben/DMSO/herbs do. I did two years of abx and had a pretty rough time. Especially with doxy and mino. I've now done about two years of Buhner herbs, post abx, and have seen some slow general improvement. Although bart symptoms continue to plague me.
May have shot myself in the foot by adopting a stray cat a couple years ago.
:-/
“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.
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
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.
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
I am on day 10 of 222mg fenbendazole with no break. Days 2/4 had pretty good herx. Again, really feel this in the eyes. Much less today than days 2/4. Trying to get into the plaquenil, but reluctant,.
roxithromycin - 600mg daily, day 124
minocycline - 200mg daily, day 44
rifampin - 600mg daily, day 74
I am uncomfortable but functional on this treatment schedule.
Garzie
You seem to be well read, have you come across any references, or have any theories, on fenbendazole? WRT lyme and cos?
Creekee
My babesia symptoms, primarily air hunger, subsided some time ago with no specific treatment. I live on a farm, bartonella from a cat scratch 30+ years ago was never treated. Lyme, many negative tests over 20 years, finally got a positive last year with my first LLMD. I have constant tick exposure in an endemic area. Would you consider adding berberine? Thank you for posting your experiences with fenbendazole, please keep updating.
Garzie/Girlie wrt testing lyme, symptomatically I am much better as far as brain fog, joint pain etc. so body is at a tolerable equilibrium. I believe lyme is like TB, very hard to clear, and the testing is inaccurate as you both pointed out. Test results just become a footnote, interesting though.
roxithromycin - 600mg daily, day 124
minocycline - 200mg daily, day 44
rifampin - 600mg daily, day 74
I am uncomfortable but functional on this treatment schedule.
Garzie
You seem to be well read, have you come across any references, or have any theories, on fenbendazole? WRT lyme and cos?
Creekee
My babesia symptoms, primarily air hunger, subsided some time ago with no specific treatment. I live on a farm, bartonella from a cat scratch 30+ years ago was never treated. Lyme, many negative tests over 20 years, finally got a positive last year with my first LLMD. I have constant tick exposure in an endemic area. Would you consider adding berberine? Thank you for posting your experiences with fenbendazole, please keep updating.
Garzie/Girlie wrt testing lyme, symptomatically I am much better as far as brain fog, joint pain etc. so body is at a tolerable equilibrium. I believe lyme is like TB, very hard to clear, and the testing is inaccurate as you both pointed out. Test results just become a footnote, interesting though.
Post Edited (carlnpa) : 8/24/2020 10:43:17 AM (GMT-6)
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
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
carlnpa --
Wanted to check on you. Day 10 sounds pretty aggressive. Are you doing okay? How are the eyes feeling now?
Fwiw, plaquenil is a drug that I did well on. Never had any problems and took it in combo with other abx for over a year. I hope it's kind to you, too!
I just started fenben/DMSO flight 6 tonight. Had some mild eye irritation hang on through my 3 off days, but not bad.
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 have the exact same bart history as you: adopted a stray cat 30+ years ago, got scratched, and tested positive for Cat Scratch Disease. No treatment back then. I don't think I'm in a high tick area these days, but we have been battling recluse spiders here. One got me last year -- wasn't fun.
Am a little jealous that you live on a farm. My best friend in grade school lived on a farm and it was the most fun in the world to visit her. It's possible I still remember how to milk a cow...
Wanted to check on you. Day 10 sounds pretty aggressive. Are you doing okay? How are the eyes feeling now?
Fwiw, plaquenil is a drug that I did well on. Never had any problems and took it in combo with other abx for over a year. I hope it's kind to you, too!
I just started fenben/DMSO flight 6 tonight. Had some mild eye irritation hang on through my 3 off days, but not bad.
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 have the exact same bart history as you: adopted a stray cat 30+ years ago, got scratched, and tested positive for Cat Scratch Disease. No treatment back then. I don't think I'm in a high tick area these days, but we have been battling recluse spiders here. One got me last year -- wasn't fun.
Am a little jealous that you live on a farm. My best friend in grade school lived on a farm and it was the most fun in the world to visit her. It's possible I still remember how to milk a cow...
Post Edited (Creekee) : 8/29/2020 3:18:30 AM (GMT-6)
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)