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» LymeNet Flash » Questions and Discussion » Medical Questions » Anyone Here on Dapsone?

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Author Topic: Anyone Here on Dapsone?
canbravelyme
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Hi guys,

Hope everyone is as well as possible [Smile]

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.

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sammy
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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.

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unsure445
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Would be great to hear from someone it has helped!

Anyone?

--------------------
unsure445

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hammer
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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.
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canbravelyme
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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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triathlongal
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Had no response to it. Yes I'm a patient of Dr. H.
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Lymedin2010
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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.
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unsure445
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Anyone else try this?

--------------------
unsure445

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Lymedin2010
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I have been on it & have not experienced any changes/benefits so far.

http://lymewhisperer.com/2015/12/13/kripalu-closing-in-on-the-8/


"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 ]

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unsure445
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Thanks Lymedin2010 for the information.

I hope some benefits kick in for you soon!

Anyone else?

--------------------
unsure445

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canbravelyme
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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.

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nomoremuscles
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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%.

**edited name of LLMD**

[ 09-05-2016, 10:52 AM: Message edited by: Lymetoo ]

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Nula
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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 ...

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Lymedin2010
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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.

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canbravelyme
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Lymedin2010 – how are things going? Are you still taking the Dapsone?

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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desertwind
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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.

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WakeUp
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quote:
Originally posted by Lymedin2010:
I have been on it & have not experienced any changes/benefits so far.

http://lymewhisperer.com/2015/12/13/kripalu-closing-in-on-the-8/


"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 ]

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Haley
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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.
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BBinme
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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!

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Mystictreeoflife
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It helped my friend. I think it hits Bartonella which would make sense based upon your (BBinme's) increased neuropathy and foot pain.
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Lymedin2010
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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.


http://www.omicsonline.org/open-access/the-use-of-dapsone-as-a-novel-persister-drug-in-the-treatment-of-chroniclyme-diseasepost-treatment-lyme-disease-syndrome-2155-9554-1000345.pd f

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Nula
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Lymedin,

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 ...

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unsure445
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I get the impression its not a quick fix by any means. But if it gets the job done, wow!

Anyone?

--------------------
unsure445

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willbeatthis
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I am interested in hearing on this as well.
Thanks for feedback!

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BBinme
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Up
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me
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Up

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

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paleogal
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It put user Melz in the hospital:

"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. "

From this thread: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=134406;p=0#000001

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Tcoach1
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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?
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lightfoot
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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 [Smile] [Smile] [Smile]

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Tcoach1
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Check out my new post on this.
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Charlie Fitzgerald
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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.

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beck
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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.

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