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Posted 12/27/2022 2:28 AM (GMT 0)
I have Lyme and bartonella and Babesia the Dr. put me on dapsone one I hit 75 mg I started not feeling well the blood test came back that I have methemoglobin and its slightly higher then normal 4.3 to 4.7 till I took 100 mg methylene blue then I went to 100 mg of dapsone and again my methemoglobin went up and again I don't feel well now the DR,. wants me to take 200 mg of methylene blue. Number is is it normal to feel terrible even if if your methemoglobin is 4.3 to 4.7 and how high can you go on methylene blue if the hemoglobin keeps on going up every time you increase the dapsone ?
Posted 12/27/2022 2:29 PM (GMT 0)
Methylene blue is prescribed for methemoglobulimia -

but a lot of people find methylene blue a very strong antimicrobial for bart - which is in line with the studies that came out of Johns Hopkins by Zhang et al - that found it to be one of the strongest agents for bart in-virto of several hundred agents tested

often people have to start it at 10mg per day or less ( i did )

so it could be that wat you are experiencing is herx reactions from the anti-microbial effects of MB - rather than just the Dapsone

dapsone is however known to be a hard drug to tolerate for a lot of people

are you also supplementing with various forms of folate - as that is normally required to aid tolerability of Dapsone and prevent anaemia?
Posted 12/27/2022 5:37 PM (GMT 0)
thanks Garzie. I wish you can call me. I am taking 30 mg of methyl folate from blue bonnet daily. why is dapsone such a harsh drug to tolerate?
Posted 12/27/2022 5:39 PM (GMT 0)
also is is it normal to feel terrible from methemoglobinemia? by me I feel when my methemoglobinemia goes up a bit I feel terrible.
Posted 12/27/2022 9:50 PM (GMT 0)

SamBernie said...
thanks Garzie. I wish you can call me. I am taking 30 mg of methyl folate from blue bonnet daily. why is dapsone such a harsh drug to tolerate?

its just an old drug - many of the older drugs were hard to tolerate and then phased out as newer supposedly better or easier to tolerate drugs came onto the market( the reality is the patent situation will have had a lot to do with it - patents run out on old drugs - and drug companies need to keep making new ones to keep their margins high )

but many of these drugs are now found to be more effective for things like Lyme - so they are getting resurrected by LLMDS

methylene blue is an old drug too - was actually the first synthetic drug developed - and was used for treatment of malaria

as i mentioned, you could be feeling awful because of the methemoglobinemia - or you could be experiencing strong herxhiemer reactions from the antimicrobial effects of the drugs - or both at the same time - its very hard for random people on internet forums to be able to tell you which

people reactions to drugs differ quite dramatically

i have read that some LLMDs use the little inexpensive blood oxygen saturation meters - the little clip on ones that go on a finger - to measure how much of a problem the methemoglobinemia is - and stop the drug if blood oxygen gets below a certain figure - that may be worth looking into.

horowitz also writes about using several forms of folate 3 diff forms at the same time - to try to keep patient folate levels up while on dapsone - and again the amount each person needs seems variable - so there is no set formula.
i think he had to test and adjust as he went
Posted 12/28/2022 1:04 AM (GMT 0)
“ i have read that some LLMDs use the little inexpensive blood oxygen saturation meters - the little clip on ones that go on a finger - to measure how much of a problem the methemoglobinemia is - and stop the drug if blood oxygen gets below a certain figure - that may be worth looking into. “

We bought one of them - after my husband got Covid.
They work great.
Posted 12/29/2022 8:37 PM (GMT 0)
what can bring down methemoglobin except methelyn blue ?
Posted 12/29/2022 9:18 PM (GMT 0)
IV ascorbic acid has been used when MB is not available
(you will not be able to get plasma levels up to necessary levels via oral route unfortunately)

https://www.ijcasereportsandimages.com/archive/2018-pdfs/2018100077z01em-mohammed/100077z01em.pdf

but as per above you really need to determine if the methemoglobinemia is what's driving your symptoms or something else - ie "association is not causation"

have you been checked for G6PD before starting Dapsone - its generally contra-indicted if you are G6PD deficiency positive

what does the prescribing doctor say about the struggle you are having with tolerability of Dapsone
Posted 1/8/2023 11:51 PM (GMT 0)
i am herxing now day number 15 on methylene blue 200 mg how long can it last
Posted 1/9/2023 11:43 AM (GMT 0)
worst for me was over around 2 weeks after a step in dose - but i went in v small steps - 10 to 15mg per step

larger steps can result in longer duration of herx symptoms - but its very individual - some people have little or none - some people have huge herx reactions from even tiny doses of antimicrobials

all you can do is learn how your body reacts and adjust accordingly - dose can be reduced or even stopped for a few days if it becomes too much

some people swear by detoxification techniques to reduce herx
- epsom salt baths
- glutathione - or its precursors
- Alka Selzer gold
- sauna
- burber pinella
etc
there are several recent threads here with various recommendations

again it seems to be v individual - and others seem to find little or no benefit from these approaches
they are however mainly v safe so worth a try
Posted 1/9/2023 3:51 PM (GMT 0)
since i went up so fast from 100 mg to 200 mg daily can the herx be stronger and last longer?
Posted 1/9/2023 5:32 PM (GMT 0)

SamBernie said...
since i went up so fast from 100 mg to 200 mg daily can the herx be stronger and last longer?

yep - definitely can work like that - stronger herxes tend to last much longer than milder ones

if you cannot split the doses of MB - eg because you are using 100mg compounded tablets - you can also try adding 1 every other day or even every 3rd day as a way of reducing the step

i made my own capsules to allow me to go up in 10mg increments
Posted 1/9/2023 8:20 PM (GMT 0)
but eventually it may be hard to follow through but it will go away the herx with gods help.
Posted 1/9/2023 8:21 PM (GMT 0)
and what does much longer mean if i may ask. usually a Herx lasts by me 2 to 3 weeks
Posted 1/9/2023 10:34 PM (GMT 0)

SamBernie said...
and what does much longer mean if i may ask. usually a Herx lasts by me 2 to 3 weeks

there is no right answer Sam - everyone is different

most seem to be 2-3 weeks max - but there seems to be many factors involved and there are always exceptions
-some drugs or herbs seem to cause longer lasting ones than others
-some people have more herx reactions than others
-some people believe detoxing techniques can reduce the time and severity - other not
etc
i have had them last 2-3 weeks before - but i think if i took a big enough step in dose it could last longer - and i would say i am in the moderately sensitive to treatment category
so more sensitive people could have them for longer
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