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Oxygen while on Dapsone

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Posted 4/25/2022 1:39 PM (GMT 0)
Anyone used Oxygen while on Dapsone due to low Oxygen Saturation? If so, did the supplemental oxygen make you feel better? More energy, breath easier, etc.


My RBC and Hemoglobin are low. Was put on RX of Lipid Acid to increase levels. Oxygen staying about 88-91. Dr gave me RX for Oxygen due to my concern of falling. However, curious if the oxygen is worth the expense.
Posted 4/25/2022 1:55 PM (GMT 0)
dapsone is linked to a condition called - methemoglobinemia - as a common side effect

methemoglobinemia interferes with how the oxygen transporting protein in the blood called haemoglobin works - and could therefore result in low oxygen saturation

methylene blue is used by Horowitz who pioneered dapsone treatment for Lyme - in low oral doses to counter that effects of dapsone

https://emedicine.medscape.com/article/204178-treatment#:

if it were me i think i would investigate whether methemoglobinemia is causing the low oxygen saturation ( there are tests for this i believe ) and if so whether MB could help
Posted 4/25/2022 4:49 PM (GMT 0)
Maybe discuss getting tested

Hb M Blood Test
(Hemoglobin M Blood Test)
Posted 4/25/2022 4:51 PM (GMT 0)
I recall being worried about it when I was on Dapsone.
I was in rough shape - dapsone just about had me going to the ER one night.
Posted 4/25/2022 5:18 PM (GMT 0)
Thank you Garzie and Girlie….

We know it is the Dapsone. My dr had me stop Dapsone for 4 days to try help my RBS and Hemoglobin. O2 sat back up. I will ask him about the Methylene Blue and dosage.
Posted 4/25/2022 5:19 PM (GMT 0)
Girlie…

Do you mind explaining rough shape on Dapsone? How long did you take it?
Posted 4/25/2022 6:27 PM (GMT 0)

BlondieStrong said...
Girlie…

Do you mind explaining rough shape on Dapsone? How long did you take it?

I believe it was 6 months.

I almost went to the ER one night.
I had such horrible - allover, head to toe body pain - my scalp was even sore to touch
Had a high fever.
Then my arms just started jerking… scary stuff.

I toughed it out - my husband stayed home from work the next day - he was worried.

I just took in fluids that day and the next two days.

The symptoms slowly subsided. I think it took a week to fully subside.

I think at that point my llmd had me reduce the dapsone to just every other day. (It was daily for one week a month)
I believe I ended up taking it Mon/Wed/Fri

We’ve been junking out/organizing our stuff and I can’t find all my old paperwork from those days.
Posted 4/25/2022 7:14 PM (GMT 0)
Thank you Girlie for sharing! Now I know if this happens to me to tough it out. Last place I want to go is hospital.
Posted 4/25/2022 8:01 PM (GMT 0)
Are you on daily dosing of dapsone? I only took it for a month, and worked up to 100mg. I was in a bad headspace when I was taking it. I was trying to do Horowitz's Double Dapsone protocol. I was having lots of troubling symptoms but I also felt I was having a hard time getting a breath at times. Some of that might have been anxiety. Hard to tell.
Posted 4/26/2022 1:59 AM (GMT 0)
Lymie24- currently on 100mg of Dapsone daily along with other meds (need do a signature like you and others). After 3 weeks at 100mg daily, weaker, hard to breath, increased fatigue. Blood test indicated my RBC & Hemoglobiln low. Also noticed o2 stats 85-91 range. Stopped Dapsone 4 days, o2 stats back at 98%. We know Dapsone the cause. Dr put me on RX increase Lipid acid. Can take up to month for levels get back normal. Dr said I could get oxygen but today found out he prescribed Methyothis Blue. Hopefully that does the trick so I can stay on Dapsone. Trying treat Babesia at moment.
Posted 4/26/2022 3:58 PM (GMT 0)
Hopefully that does do the trick for you. Keep us updated!
Posted 4/26/2022 4:07 PM (GMT 0)
Dr Horowitz also find it necessary to use high dose folate supplements to prevent issues whileon dapsone - he uses some strong prescription type folate supplement

the details are in his book - "How can i get better" and i think in some of his online videos if you search for stuff in the last 2-3 years or so ( when he has been doing dapsone trials )
Posted 4/26/2022 4:19 PM (GMT 0)

Garzie said...
Dr Horowitz also find it necessary to use high dose folate supplements to prevent issues whileon dapsone - he uses some strong prescription type folate supplement )

Same with DrJ
I had a prescription filled for leucovorin - took it every day that I took the dapsone
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