canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi guys,
Hope everyone is as well as possible
Anyone here try Dapsone? I'm somewhat concerned about taking it because my Ferritin levels are notoriously low, despite the fact that my hemoglobin levels are OK...
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Do one else has answered yet, sorry. I didn't want to be the only one. It didn't help me at all. In fact, the protocol that I was given with the Dapsone set me back.
I was terribly disappointed as this drug was talked up to me. But I guess it works really well for some people. For them, the protocol is totally worth trying.
So try it and take my post as just one person's honest experience.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I am trying to get that same information as it was recently recommended to me as well. I have talked to only one person who said it did not help. It has many potential issues.
Posts: 69 | From Birmingham, AL 35242 | Registered: Sep 2008
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks, Guys!
Sorry for the late reply, but I just saw that there'd been replies to my question! Is everyone here a patient of Dr. H.'s?
Thanks for sharing your not-so-spectacular experiences. I've still not started the protocol, and will keep all you've said into account.
Sure would be nice to hear some positive results stories...?
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posted
Had no response to it. Yes I'm a patient of Dr. H.
Posts: 151 | From North East | Registered: May 2011
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Same here for the Dapsone & I declined it the first round due to potential side effects. Again it was recommended to me & I am debating on this still.
Posts: 2094 | From NY | Registered: Oct 2011
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"Dr. H and Ying Zhang from John Hopkins, it seems, are on the verge of a breakthrough. Using mycobacterium drugs–like those used in leprosy and tuberculosis–in hope of cleverly and mercilessily attack the four main persisters: Borrelia, Babesia, Bartonella and mycoplasma. As Dr. H explains, he is typically successful in getting 92% of his patients better. But there is an “8%” that are the most difficult to treat. Could this breakthrough break the code for closing in on the 8% of people that are most difficult to get better? It could. I’ll never forget those chilling yet cheerful words: “We are closing in on the 8%,” Dr. H whispered.
It works like this. Dr. H first combines 2-3 intracellular antibiotics to reach the persister bacteria hiding in cells. This would be the “triple persister” cocktail. Then he pulses with a cellular antibiotic. This pulsing has been shown to be effective based on the incredible work of professor and researcher Kim Lewis of Northeastern University. Dr. H has found this regimen to be very successful for people who continue to have symptoms or relapses. BUT FURTHERMORE, he has now found with the help of the work from Dr. Zhang that adding dapsone (pyrazinamide) to this regimen for the most difficult of cases…could be THE key to perishing the persisters for once and for all. Dapsone being that potential mycobacterium super drug used against Tuberculosis and leprosy."
**edited name of LLMD**
[ 09-05-2016, 10:51 AM: Message edited by: Lymetoo ]
Posts: 2094 | From NY | Registered: Oct 2011
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-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Lymedin2010 – How long have you been on the Dapsone? Which other meds are you taking?
I continue to postpone starting – please keep us apprised of any developments...!
Best,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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quote:As Dr. H explains, he is typically successful in getting 92% of his patients better. But there is an “8%” that are the most difficult to treat. [/QB]
Really?
How does he determine this?
Seems I've known an awful lot of people in that 8%, and not so many in the 92%.
posted
I'm a patient of Dr. H.'s. Dapsone was suggested to me as well. Would love to chat privately ...
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
I have been on it for over 2 weeks & it does not cause much herx & no side affects that I can detect aside from the million symptoms I already have. Perhaps if anything it might be attributing to intensity of existing symptoms, but it would be very hard to tell with the hell of symptoms & pain I am experiencing now. I took a 2-3 day break between the two week cycle & the symptoms were pretty much the same with & without the dapsone.
If anything I appear to be getting worst while taking Penicillin VK, Minocycline, Plaquinil, & other herbs.
Posts: 2094 | From NY | Registered: Oct 2011
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Lymedin2010 – how are things going? Are you still taking the Dapsone?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I've been a patient of Dr. H. for 4 years.
I had taken Dapsone along w/ the persister cocktail this past summer. No herx and no change in relaspe symptoms. I'm back to my "standard" pulsing regime that keeps my symptoms in relative check. Functioning @ close to 100% when not in state of relapse.
I keep my expectations realistic and know when I need to jump back on abx.s. I'm chronic but functioning very well at this point.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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"Dr. H and Ying Zhang from John Hopkins, it seems, are on the verge of a breakthrough. Using mycobacterium drugs–like those used in leprosy and tuberculosis–in hope of cleverly and mercilessily attack the four main persisters: Borrelia, Babesia, Bartonella and mycoplasma. As Dr. H explains, he is typically successful in getting 92% of his patients better. But there is an “8%” that are the most difficult to treat. Could this breakthrough break the code for closing in on the 8% of people that are most difficult to get better? It could. I’ll never forget those chilling yet cheerful words: “We are closing in on the 8%,” Dr. H whispered.
It works like this. Dr. H first combines 2-3 intracellular antibiotics to reach the persister bacteria hiding in cells. This would be the “triple persister” cocktail. Then he pulses with a cellular antibiotic. This pulsing has been shown to be effective based on the incredible work of professor and researcher Kim Lewis of Northeastern University. Dr. H has found this regimen to be very successful for people who continue to have symptoms or relapses. BUT FURTHERMORE, he has now found with the help of the work from Dr. Zhang that adding dapsone (pyrazinamide) to this regimen for the most difficult of cases…could be THE key to perishing the persisters for once and for all. Dapsone being that potential mycobacterium super drug used against Tuberculosis and leprosy."
Thanks, LYMEDIN2010 this is incredible information.
[ 09-05-2016, 10:53 AM: Message edited by: Lymetoo ]
Posts: 696 | From New York | Registered: Aug 2006
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Would someone post the dosage or PM me please. My thought is that those people probably have mycobacterium . Maybe this is something else that ticks carry.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Bumping this up, I just started dapsone, not sure if this is side effect or flare already( I only took one dose) I seem to be having increased paid , sharp shooting pains moving all over my body. Also my foot pain is worse, hurts when I walk, slot of tingling and burning. I wonder if dapsone can cause tendon issues. Anyone experience tendon issues? Any input would be great!
Posts: 79 | From Maine | Registered: Sep 2011
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posted
It helped my friend. I think it hits Bartonella which would make sense based upon your (BBinme's) increased neuropathy and foot pain.
Posts: 18 | From Maine | Registered: Dec 2013
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
So who are these people who got better on Dapsone? Anyone here? Not me, but I may consider taking it again for longer periods this time.
Yes, I wonder where they are ... the people who got better on Dapsone. Anyone out there?
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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posted
Up
Posts: 79 | From Maine | Registered: Sep 2011
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Up
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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"I am writing to you a day after a hospitalization due to methemoglobinanemia (induced by an antibiotic dapsone--> lack of oxygen to cells). Not fun. For some, this drug seems to be helpful but I guess my body couldn't take it. Plus my local lab screwed up and didn't monitor my levels properly, which ultimately led to this mess. "
posted
I have been on this for 10 days now. Nothing as of yet. It is a bit scary with all the stats on it. I was wondering if pulsing would be ok instead of daily?
Posts: 157 | From Tampa | Registered: Jul 2013
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
I am also very interested in this protocol. I understood it to be a life saver for people who herx constantly with any treatment, Herx Kings and Queens. I think I qualify on that account.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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posted
Ever since taking Dapsone, I'm more clear headed and energy levels have increase tremendously.
I took Dapsone with Stevia, completely believe Stevia makes it much more potent against biofilms and persister cells.
Definitely helped me get past a plateau... Traditional antibiotics weren't do much for me after 4-5 years of use.
Now on disulfiram, having a lot of success with this persister cell drug as well.
Sorry to hear people aren't having much success, for me it helped tremendously. I would try it with Stevia, even pairing it up with dox or rifampin. Start off low doses, even 25mg worked quite well for me in early stages of treatment with this drug. As your body tolerates it well and herxes go down, add in doxy and stevia. Maybe even rifampin if you can tolerate it.
Another tip, do some walking, running or some type of cardio to help antibiotics circulate through your system. Dapsone gave me a rush of energy and clear headedness soon as I got on it, instantly!
A very strong drug, so take carefully under doctors supervision. Taking high doses of folic acid to keep red blood cells up and detoxing are a must.
Posts: 108 | From Germany | Registered: Jul 2017
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quote:Originally posted by Charlie Fitzgerald: Ever since taking Dapsone, I'm more clear headed and energy levels have increase tremendously.
I have been taking Dapsone for over a year now and I have also had this same improvement. The higher the dose I am on the better I feel and think. Dapsone was the first antibiotic that I saw any improvement with.
Unfortunately, I am not able to take it everyday as my red blood cell count and hemoglobin dipped too low when I did. I pulse it every other day now and am still able to see a lot of benefits. I get labs drawn every two weeks to monitor my blood counts and so far so good.
I hope to continue increasing my dose because each time I do I see an improvement.
Posts: 91 | From USA | Registered: Apr 2014
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