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Posted 1/11/2021 3:45 PM (GMT -7)
Hi

I’m am in a bit of a quandary. I started with a llmd in November. He follows the Horowitz protocol. It was doxy, rifampin and dapsone.

I could not handle the doxy. I had extreme nausea which was already a problem before starting doxy. He switched me from the doxy to azithromycin.
He has me on Methyl folate 10 mg.
I heard that this protocol can cause severe anemia.

I was on another group and was told by another patient that I am not on enough methyl folate. No where near enough and that Horowitz wants blood work every 2 weeks and my dr said every 5 weeks.

I was on the protocol for 5 weeks and developed thrush. I had to go off the protocol until that cleared. He put me on clotrimazole for it.

I am so scared to continue with this protocol. I don’t know if I should question my Dr about what I heard about the methyl folate.

I also heard that this treatment does not work if you don’t clear Bart. I don’t know if I have Bart. My Dr never mentioned this.

I’m going to test for it this week through igenix. I will also test for babesia. I’ve never done co infection testing because I know it hard to test for and get accurate results.

I thought I trusted this dr. He is a llmd. He has been a dr for 32 years.

Also I was thinking if I do go back on the antibiotics I was thinking to possibly incorporate it with Dr Rawls restore program. Or possibly just stay on the abx short term then switch.

Any opinions would be appreciated.

Thank you.
Posted 1/11/2021 5:27 PM (GMT -7)
Was the 10 mg dose of methylfolate tailored to your specific situation? Or, is that dose simply a protocol?

If it's part of a protocol the doctor gives everyone, then that sounds like guessing to me.

Following below are a few articles I pulled from Dr. Ben Lynch's website. Maybe give them a read and see if any questions are answered.

http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24
http://mthfr.net/methylfolate-side-effects/2012/03/01
http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26

You could also leave a comment at the end of any of his blog articles and ask Dr. Lynch for some guidance. I saw many comments from October 2020, so he's clearly still receiving and responding to questions.

For what it's worth, I was on Dr. Rawls Restore Program back in 2015. In my case, after about four months on the program, I started having noticeable improvements in my health. Regrettably, though, I stopped the supplements, due to the cost. It's a decision I still regret to this day.

Almost exactly a year later, I went back on the Restore Program for another four months. The second time, however, I found no benefit in those four months of supplements. Again, I regret not staying on the protocol longer.

There's no way to know, of course, if staying on the program -- either time -- would have ultimately led to my recovery. But, I sure wish I could go back in time and make a different decision. Or, better yet, I'd go back even further and avoid the tick bite.

I'm sorry I can't give you anything more helpful. I wish you a speedy, successful, and lasting recovery.
Posted 1/11/2021 6:13 PM (GMT -7)
This is the most recent published study from Horowitz: https://pubmed.ncbi.nlm.nih.gov/33105645/

VIEW IMAGE

So yes, it seems like your doctor isn't quite taking the same precautions that Horowitz does.

Maybe you can find a way to ask your doctor about following the protocol to the letter. Something like "I read the latest published research, and I'm wondering if you'll allow me to follow the exact protocol from the study?"

If you read the study, many of the responders did have Bartonella too. I wouldn't worry about that until the tests come back.

I would be more concerned about 1) the yeast overgrowth, and 2) the fact that you haven't mentioned taking Leucovorin, which AFAIK is really necessary when using Dapsone.

Are you taking probiotics at least?
Posted 1/11/2021 6:55 PM (GMT -7)

The Dude Abides said...
Was the 10 mg dose of methylfolate tailored to your specific situation? Or, is that dose simply a protocol?

If it's part of a protocol the doctor gives everyone, then that sounds like guessing to me.

Following below are a few articles I pulled from Dr. Ben Lynch's website. Maybe give them a read and see if any questions are answered.

http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24
http://mthfr.net/methylfolate-side-effects/2012/03/01
http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26

You could also leave a comment at the end of any of his blog articles and ask Dr. Lynch for some guidance. I saw many comments from October 2020, so he's clearly still receiving and responding to questions.

For what it's worth, I was on Dr. Rawls Restore Program back in 2015. In my case, after about four months on the program, I started having noticeable improvements in my health. Regrettably, though, I stopped the supplements, due to the cost. It's a decision I still regret to this day.

Almost exactly a year later, I went back on the Restore Program for another four months. The second time, however, I found no benefit in those four months of supplements. Again, I regret not staying on the protocol longer.

There's no way to know, of course, if staying on the program -- either time -- would have ultimately led to my recovery. But, I sure wish I could go back in time and make a different decision. Or, better yet, I'd go back even further and avoid the tick bite.

I'm sorry I can't give you anything more helpful. I wish you a speedy, successful, and lasting recovery.

Thank you for your response. I have a feeling that folate dosage is just what he uses for everyone. The only thing I can think of is if blood work shows anemia that he would up the dose or add another med.
maybe this is his starting point.

I was not able to get anything on the links you sent. The wouldn’t load.

Thanks for your feedback on dr Rawls. It was somewhat positive.

So have you found a protocol that worked for you?
Posted 1/11/2021 7:07 PM (GMT -7)

Adam B said...
This is the most recent published study from Horowitz: https://pubmed.ncbi.nlm.nih.gov/33105645/



So yes, it seems like your doctor isn't quite taking the same precautions that Horowitz does.

Maybe you can find a way to ask your doctor about following the protocol to the letter. Something like "I read the latest published research, and I'm wondering if you'll allow me to follow the exact protocol from the study?"

If you read the study, many of the responders did have Bartonella too. I wouldn't worry about that until the tests come back.

I would be more concerned about 1) the yeast overgrowth, and 2) the fact that you haven't mentioned taking Leucovorin, which AFAIK is really necessary when using Dapsone.

Are you taking probiotics at least?

Adam.
Thank you for your reply.

I don’t believe my dr was going to get me to double dapsone. I think his goal was 100 mg.

I think I will have to approach him on the Horowitz protocol.

He does not have me on many things that were on the Horowitz protocol.

Apparently this is a very conservative approach that my dr has me on.

Yes. I am on a good probiotic. I’m not taking nystatin though.

Now I’m worried that the protocol I’m on won’t help me but I would be very worried with the Horowitz protocol. It seems extreme.
Posted 1/11/2021 7:08 PM (GMT -7)
Does your doc have you on probiotics? When I saw dr. H he had me on 3 different ones. I was also on nystatin when taking antibiotics.

I chose not to do the dapsone protocol while under his care so I can’t be of more help on the specifics.

Post Edited (k07) : 1/11/2021 7:12:47 PM (GMT-7)

Posted 1/11/2021 7:30 PM (GMT -7)
K07

Thank you.

Yes I take probiotics but not nystatin.

I feel like I should be on it though.
Posted 1/11/2021 7:41 PM (GMT -7)

aphysicalwreck said...
Thank you for your response. I have a feeling that folate dosage is just what he uses for everyone. The only thing I can think of is if blood work shows anemia that he would up the dose or add another med.
maybe this is his starting point.

I was not able to get anything on the links you sent. The wouldn’t load.

Thanks for your feedback on dr Rawls. It was somewhat positive.

So have you found a protocol that worked for you?

Hmm, I'm not sure what to think about the links not working. As soon as I posted the response, I tested all three links and they worked for me. I just tested them again and they still work for me. If you're on a mobile device, perhaps you can try a regular computer? Or, maybe try a different browser?

As for me, I've not found anything to resolve my issues. A month or two ago, I finished about six months on various supplements that a "doctor" (chiropractor) sold me with no lasting benefit. I'd say I had a transient improvement during the summer, but I can't be sure if it was all the baloney he sold me (mostly products from CellCore Biosciences and Standard Process) or if it was one of the many other supplements I was taking on my own. Whatever it was, the improvement vanished after several weeks.

I've become very sour on "alternative" doctors, testing, and treatments. I'm convinced most alternative doctors really do want to help, but I think they suffer from living in a bubble and repeating a lot of folklore and unproven ideas. I have problems with "traditional" medicine, too. I think there are positives and negatives on both sides. Unfortunately, though, alternative healthcare has been a disappointment to me. It's very much a business and there's a lot of money at stake. I don't think it's entirely about money for everyone. In fact, some doctors probably work long hours, give more value to their patients than they receive in payment, and they barely break even. But, others are making an absolute mint. I believe this has to play a part.

Anyway, right now, I don't have the funds to try some other ideas on my own. I had a couple of rounds of antibiotics, several years ago, but I've not had any in more than five years. So, I'm sorta stuck in limbo. I still read various things, but have stopped chasing long lists of possible conditions and their many overlapping symptoms -- many, of which, can't be proven. Once I have some income, I do plan to try a few more things, but I'm not entirely sure what the full plan might resemble. I have a few ideas floating around in my head.

_

Post Edited (The Dude Abides) : 1/11/2021 7:46:45 PM (GMT-7)

Posted 1/11/2021 7:44 PM (GMT -7)
10mg of methylfolate is a lot. Some people can handle it, but many can not. If he’s giving that to everyone I’d question it. Neil Nathan claims that when he did a study all it took was 200mcg to normalize people’s homocysteine. You definitely don’t need more than 10mg, and if you have anxiety or insomnia could be that

Dude, I’m sorry to hear that you’ve been unable to treat lately due to funds. I’d love to hear your full story, symptoms and how you got sick, what you’ve done. I don’t think I’ve heard it before . Maybe we could all put our heads together.

Post Edited (dcd2103) : 1/11/2021 7:50:33 PM (GMT-7)

Posted 1/11/2021 8:14 PM (GMT -7)
Dude.

I hear you. I am so tired of both natural drs and llmd’s.
It’s mostly about money.
Some of the llmd’s charge up to $2000 for a first consultation. It’s taking advantage of ill people.

I like the more natural idea but if one is very ill I’m not sure the natural approach is aggressive enough.

I was thinking of dr Rawls but I have been very very ill lately and I don’t know that his protocol will work for me.

What do you have up your sleeve if you end up getting the funds for it?
Posted 1/11/2021 10:11 PM (GMT -7)

aphysicalwreck said...
Hi

I’m am in a bit of a quandary. I started with a llmd in November. He follows the Horowitz protocol. It was doxy, rifampin and dapsone.

I could not handle the doxy. I had extreme nausea which was already a problem before starting doxy. He switched me from the doxy to azithromycin.
He has me on Methyl folate 10 mg.
I heard that this protocol can cause severe anemia.

I was on another group and was told by another patient that I am not on enough methyl folate. No where near enough and that Horowitz wants blood work every 2 weeks and my dr said every 5 weeks.

I was on the protocol for 5 weeks and developed thrush. I had to go off the protocol until that cleared. He put me on clotrimazole for it.

I am so scared to continue with this protocol. I don’t know if I should question my Dr about what I heard about the methyl folate.

I also heard that this treatment does not work if you don’t clear Bart. I don’t know if I have Bart. My Dr never mentioned this.

I’m going to test for it this week through igenix. I will also test for babesia. I’ve never done co infection testing because I know it hard to test for and get accurate results.

I thought I trusted this dr. He is a llmd. He has been a dr for 32 years.

Also I was thinking if I do go back on the antibiotics I was thinking to possibly incorporate it with Dr Rawls restore program. Or possibly just stay on the abx short term then switch.

Any opinions would be appreciated.

Thank you.

When I was on Dapsone (Dr J) I took 10 mg daily.
Posted 1/11/2021 10:15 PM (GMT -7)
LLMD MR explains it:

“ Dapsone Blocks Folate Metabolism. Dapsone works by blocking folate metabolism in germs, but it also blocks folate metabolism in red blood cells leading to severe anemia. To prevent this consider taking up to 65 mg of folate a day (15 mg as 5-MTHF and 50 mg as prescription Leucovorin) while you are on this medication at a 100 mg dose. If you use the newer 200 mg dose, you may need to take up to 120 mg of folate a day. “
Posted 1/11/2021 10:19 PM (GMT -7)
Also - Dr J tested my G6PD level before I went on the protocol.

Here’s what LLMD MR wrote about it



“Check G6PD Levels Before You Start. Do not use dapsone if you have low Glucose-6-phosphate dehydrogenase (G6PD) deficiency. This condition mostly affects men. If a person has G6PD deficiency and they take dapsone, it could cause hemolysis (the tearing apart of the red blood cells). Before starting this medication, your physician should measure a G6PD blood test.
Dapsone Blocks Folate Metabolism. Dapsone works by blocking folate metabolism in germs, but it also blocks folate metabolism in red blood cells leading to severe anemia. To prevent this consider taking up to 65 mg of folate a day (15 mg as 5-MTHF and 50 mg as prescription Leucovorin) while you are on this medication at a 100 mg dose. If you use the newer 200 mg dose, you may need to take up to 120 mg “
Posted 1/12/2021 3:49 AM (GMT -7)
just a small point of clarification - at least as far as I understood it.

I think what Dr H actually stated about Bartonella and dapsone protocols - is that of the people who did not reach remission on this protocol most were co-infected with Bartonella.

however, this is not the same as stating that Lyme patients co-infected with Bartonella who are treated with this protocol do not get better - as clearly, some / many did.

there is a big difference between these two statements.

It's the Chinese whispers effect at work I think - many aspects of Lyme are complex and nuanced - and tend to get distorted into a kind of black and white truisms over time.

also, it worth noting that the people in his dapsone studies are typically the sickest patients who have been ill for the longest and have failed many prior antibiotics protocols ( it is an unpleasant treatment and rarely used unless the patient has failed several others first) - so who knows what else they are infected with and what other co-morbidities that may now be suffering that all hinder recovery.

I would not be discouraged by the findings/statement - i don't think it's really even new news - many of the people here who struggle to get well have confirmed or suspected Bartonella infections - myself included. Bartonella is just another factor that makes recovery more difficult whatever approach you take.

if you have a symptom pattern that suggests Bart - testing may help you and your LLMD feel more confident about selecting the right treatment.

testing for it does indeed have its limitations - but new tests are starting to become available -

which test were you planning on doing?
Posted 1/12/2021 4:53 AM (GMT -7)
Girlie

Thank you for all that info.
So you were on 10 mg also. But did you also take leucovorin? What about nystatin. My dr says he uses the Horowitz protocol but he does not have me on everything that Horowitz uses. Also I don’t think he plans on getting me up to 200 mg. I think is his plan is 100 mg.
My dr did test for the g6pd before starting. I was ok to start.
Posted 1/12/2021 5:31 AM (GMT -7)
Garzie

Thank you for your input.

That clarification was beneficial.

I am not sure if I really have Bart symptoms.

I have been diagnosed in the past with borrelia miyamotoi and bands 23 and 39 for Lyme.

I think my symptoms seem more of those findings and maybe babesia.

I was planning on testing just for babesia ifa Ducani and microti and for bart western blot igg and igm. Everything is just so expensive.

My symptoms:
Lightheaded
Head pressure
Head tingling
Eye twitching
Disequilibrium ( hard to walk due to it)
Wobbly legs ( somewhat new) they used to feel heavy. Now more weak and wobbly
Very shaky feeling ( new)
Freezing all the time ( new)
Air hunger (occasionally)
Night sweats (occasionally)
Upper arms into shoulders and back a weird weakf feeling. But neuro feeling ((new)
Nausea
Digestive issues
Sore little nodes under arms
Lower back pain ( possibly not related)

What’s bothering me the most right now is this constant internal shaky feeling and freezing all the time and an off balance feeling and weak legs. I’m having such a hard time walking as a result.

I’ve been worried sick that there is something else wrong with me.

I’ve been ill for years but right now I’m at my worst. It all started to get real bad when I started treating with herbs this past summer. I’ve never been the same. I’ve treated many times before and never had such a bad reaction. I was not even on full dose. Actually not even close.

Thanks for listening. This has become an obsession. It’s a horrible nightmare.

And this is the short version!! Lol
Posted 1/12/2021 5:50 AM (GMT -7)
Sounds like you may have pots as well. I personally do not like herbs anymore. I find they often activate the immune system, and a lot of your symptoms sound inflammatory/immune mediated. How intense are the night sweats? also where is the internal shaky feeling? chest/abdomen or exremities?
Posted 1/12/2021 6:57 AM (GMT -7)
Dcd

I don’t think it’s pots from my research on it.

My internal shaky feeling is internal. Not specific to a body part.

The night sweats are not extreme.
Posted 1/12/2021 8:00 AM (GMT -7)
which herbs did you try this summer - and what were your reactions to them?

sometimes reactions to treatments can be useful clues
Posted 1/12/2021 8:01 AM (GMT -7)
the skin nodules you mention might be somewhat specific

can you describe them in more detail - or post a photo ?
Posted 1/12/2021 9:58 AM (GMT -7)
Garzie

I do have some nodules on my thighs. Lipomas.

But I was referring to sore Lymph nodes under arms.
Posted 1/12/2021 11:28 AM (GMT -7)
“ I also heard that this treatment does not work if you don’t clear Bart. I don’t know if I have Bart. My Dr never mentioned this. “

The Protocol I was taking under the care of Dr J that had Dapsone in it was specifically for Bartonella/Persisters.
Posted 1/12/2021 11:42 AM (GMT -7)
Girlie.

Good to know. Thank you.

I appreciate all you do for this forum.

I hope you are still doing pretty well.

Stay safe of course!!
Posted 1/13/2021 5:04 AM (GMT -7)

aphysicalwreck said...
Garzie

I do have some nodules on my thighs. Lipomas.

But I was referring to sore Lymph nodes under arms.

sore lymph nodes is a classic symptom in Bart - but also can be present in many of the other co-infections
mycoplasma, rickettsia etc - pretty much any of the intracellular co-infection bacteria as i recall
Posted 1/13/2021 5:31 AM (GMT -7)
Garzie.

Thanks.

I’m getting blood work today sent to Igenix. I’m debating on whether or not to spend the money on Bart testing or just do babesia testing.

Big dilemma.

It’s just so expensive.
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