posted
Question for those of you who have taken Dapsone: have you had an issues tolerating the folic acid-induced anemia that comes with it?
After a few weeks of Dapsone, my hemoglobin had dropped by 3 grams / dL (which Dr H says is normal), but I started to get a whole host of anemia-like symptoms: my heart rate would spike easily, I would have shortness of breath, headaches, and I would get severe leg cramps.
I was on all of the supportive supplements and medications that Dr H recommends.
I stopped the Dapsone and haven't restarted yet. (It's been a month or so.)
I was previously very optimistic about Dapsone, but dealing with the severity of these symptoms while I take it would be pretty rough. Kinda wondering... is it just me?
(editing out doctor's last name per Lymenet T&C)
[ 10-06-2018, 04:31 PM: Message edited by: Robin123 ]
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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I have been on this protocol for several months. I too have anemia, but I wonder if it is not hemalytic anemia due to either bartonella or babesia - the testing for both suck. Then again, dapsone can cause hemalytic anemia, too.
It is also difficult to know if the crappy symptoms since embracing the protocol are from herxing, or the dapsone etc, or from the resultant anemia - or some combination of them. OR, from another tbd, or something else.
It's hard sometimes to see the forest for the trees on this therapy.
Posts: 228 | From Unitied States | Registered: Jul 2015
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posted
Thanks, Duncan. It's very helpful to hear from you. This treatment is very new so I don't think most Drs (except "H") have much experience.
I don't think my anemia was hemolytic.
IIRC, H says in his book that of the many patients they've treated, even ones with G6DP deficiency, they haven't seen Dapsone-induced hemolysis.
I'm still very much on the fence about whether or not to restart the protocol. Can you share any more about your decision to continue?
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
After so many years of struggling with Lyme, I could not justify to myself not trying. That does not mean I don't second guess myself. I think for some of us, no amount of known abx will resolve Lyme & Co. As you seem to suggest, it is a personal decision if only because of the unknowns.
That was my logic, though: I have to give it a go.
Posts: 228 | From Unitied States | Registered: Jul 2015
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posted
Cool, thanks again, Duncan. If you're open to chatting more, would you mind sending me a PM? No worries if not.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
It's been years since I have attempted to pm someone on this forum. I will try to figure it out tomorrow.
It may help if you pm me and I just respond.
I would like to discuss dapsone and the 3 other parts of the protocol with someone else who has embraced them. It is a small population, I think. This is the second time I've been on dapsone.
Posts: 228 | From Unitied States | Registered: Jul 2015
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Any more positive or negative responses to dapsone? I just started to see a new doc who has seen many good results for those with borrelia miyamotoi.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Sorry, I don't spend much time on this forum and didn't see your post until now.
I have not taken Dapsone since posting this thread, but might try again. I am now sick/desperate enough that I don't care about pesky anemia symptoms while I am taking it.
My general sense is that there are probably 10x as many patients using Disulfiram as are on Dapsone. There are Facebook groups for each.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
Willy, I am afraid that you are missing the point. Anemia on Dapsone is due to its effect on folic acid, supplementing with iron will not remedy this.
With regard to side effects, I respect that with any treatment there are potential risks to weigh, however, the two treatments you mention are also the ones with the latest and strongest research behind them. (Which is still not very strong, which is a shame.)
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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