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TOPIC: Dapsone > Lyme disease > ITP connection?

Dapsone > Lyme disease > ITP connection? 4 years 4 months ago #54254

  • Rob16
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  • Dapsone is roughly 50% effective in treating ITP.
  • The mechanism by which Dapsone is effective in treating ITP is unknown.
  • Dapsone is an antibiotic.
  • Certain infections, including Lyme disease, are suspected of causing ITP.
I have privately suspected that Dapsone is effective against ITP by treating some underlying infection.
However, I have not been able to find a connection between Dapsone and Lyme disease or any other chronic infection.
Until now:

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.pdf
The Use of Dapsone as a Novel “Persister” Drug in the Treatment of Chronic Lyme Disease/Post Treatment Lyme Disease Syndrome RI Horowitz - Apr 8, 2016

Abstract
Dapsone (diaminodiphenyl sulfone, i.e., DDS) is commonly used to treat dermatological conditions including
acne, dermatitis herpetiformis, and leprosy. Mycobacterium leprae, a known "persister" bacteria, requires long-term treatment with intracellular medications including rifampin and Dapsone. Other "persister" bacteria recently have been identified, including Borrelia burgdorferi, the agent of Lyme disease.

Objectives: We tested the efficacy of DDS in patients with chronic Lyme disease/PTLDS with tick-borne coinfections
including Babesiosis, who failed commonly used antibiotic and antimalarial protocols.

Methods: 100 patients with Lyme disease, 56 of who were Babesia positive, were placed on Dapsone and folic
acid in combination with either one or two other intracellular drugs, including rifampin, tetracyclines, and/or macrolide antibiotics. Several patients also took cephalosporins, and all patients were on protocols to treat cystic forms of Borrelia and biofilms.

Results: Patients completed a symptom severity survey before beginning treatment with Dapsone and then
again after at least one month of treatment scoring their complaints from 0 indicating “none” to 4 indicating “severe” for symptoms including fatigue, joint and/or muscle pain, disturbed sleep, and cognitive difficulties. Results
demonstrated that Dapsone significantly improved all patients’ clinical symptoms except for headache, where changes did not reach statistical significance. In addition, Dapsone, known to have anti-malarial effects, helped resistant Babesia symptoms of sweats, chills, and flushing. Lyme positive, Babesia positive patients also demonstrated significant changes in pain, disturbed sleep, and cognitive difficulties. Side effects included macrocytic anemia and rare cases of methemoglobinemia, which resolved by either decreasing the dose of Dapsone or increasing folic acid.

Conclusion: Dapsone is a novel and effective “persister” drug for those with PTLDS and associated tick-borne co-infections who have failed classical antibiotic protocols. Further prospective trials must determine the DDS dose, length of treatment and best combination antibiotic therapy in order to effect a long-term health benefit.


If my hypothesis is correct, and the mechanism by which Dapsone is effective is by treating "persister" bacteria, then given the fact that Dapsone is roughly 50% effective against ITP, it stands to reason that 50% or more of ITP cases are caused by latent infection. This would be huge!

In addition, Dapsone is used to treat a host of other autoimmune diseases. It is possible that those diseases as well are caused by some latent infection.

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Dapsone > Lyme disease > ITP connection? 4 years 4 months ago #54260

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I strongly believe that bacterial and viral infections play a role in autoimmunity. I think it's ignored by the medical community and will never really be addressed. They are too focused on treating symptoms instead of looking for underlying causes. If they do find an underlying cause by chance, they don't know how to treat it effectively. Antibiotics are not the answer. These four common viruses can play a role, as well as bacteria.

Varicella zoster virus (VZV) /Human Herpes Virus (HHV)-3
Epstein-Barr virus (EBV)/ HHV- 4
Cytomegalovirus (CMV)/HHV-5
Human herpesvirus type 6 (HHV-6)

Yeast overgrowth, such as candidia, is also a possible cause. That cannot be controlled as long as sugar is consumed. I never used to believe in underlying causes, thinking autoimmunity was mostly caused by predisposition and bad luck. I have much different beliefs now.

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Dapsone > Lyme disease > ITP connection? 4 years 4 months ago #54261

  • Rob16
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The fact that Dapsone is roughly 50% effective in treating ITP, tells me that the right antibiotics are the answer at least 50% of the time. But certain bacteria can exist in latent form, similar to herpes zoster lying dormant and waiting to cause shingles. Dapsone is useful as an antibiotic because it helps fight those specific latent bacteria.

I have no doubt that you are correct about those viruses and yeast, and sugar exacerbating Candida overgrowth possibly being a cause of drops in platelet counts and a trigger for other autoimmune flares.

Another fungus - pneumocystis pneumonia - also can lie dormant in the lungs waiting for our immune system to let down its guard. It is also treatable with Dapsone. It is more prevalent in patients receiving glucocorticoids for systemic autoimmune diseases. I cannot find research showing it to be causative of autoimmunity, but who knows?

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Dapsone > Lyme disease > ITP connection? 4 years 4 months ago #54273

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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But Dapsone treats ITP, it doesn't cure it, therefore, it doesn't fix the underlying cause which is why I don't believe that antibiotics are the answer. The result is temporary. I took Dapsone and it made me really sick. None of the treatments address underlying causes, they only mask symptoms.

Think of how many people happen to take antibiotics while they have ITP. If antibiotics were the answer, we'd have people with counts shooting up all the time. That doesn't happen. If counts do go up some, it isn't lasting. So should people be on long-term antibiotic therapy? That could be argued, but I think it would do more harm than good.

Interesting theory though. Your turn.

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Dapsone > Lyme disease > ITP connection? 4 years 4 months ago #54275

  • Rob16
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Thanks for "arguing" this topic with me, Sandi. It does help to clarify things.

If my hypothesis is correct - that Dapsone works against autoimmune diseases by attacking latent bacteria - then Dapsone does in fact address the underlying cause. Even when it cannot totally eradicate the bacteria and cure the problem, it is doing more than just treating symptoms.

If my hypothesis is correct as to the mechanism by which Dapsone treats autoimmune diseases, and if Dapsone is less than completely effective at killing the offending bacteria, then that suggests more research resources should be directed at improving on Dapsone, rather than spending tens of millions of dollars pursuing "me too" monoclonal antibodies to compete with Rituxan.

I disagree with your argument that if antibiotics were the answer, then other antibiotics should work as well. Dapsone works via a completely different mechanism than other antibiotics, and works by targeting latent bacteria (what the article called "Persister" bacteria) which other antibiotics have zero effect on.

I disagree with the argument that the result is temporary. What treatment is permanent? Rituxan? Nplate?There are very few "permanent" remissions with any of the known treatments.

You took Dapsone and it made you sick. Most of the side effects of Dapsone are reversible, especially if properly monitored. You took Rituxan and it caused permanent harm. By the same logic, why aren't you arguing against Rituxan? One of our forum members is having a bone marrow transplant, which his doctor thinks is attributable to Nplate, as I recall. Only time will tell what the long term risks are for Nplate and Promacta.

The risk profile of Dapsone is extremely well known, as it has been used for decades throughout the world. It is considerably safer than splenectomy. I do not have the data to compare it to Rituxan, but we know that Rituxan also has risks that are not negligible. Doing "more harm than good" is possible with any treatment. I do agree with your principle that the less treatment that can be used, the better.

It is important to note that Dapsone works equally well even when other treatments have failed. It is almost as effective as Rituxan, and for someone who is out of other options, it should not be overlooked.

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Dapsone > Lyme disease > ITP connection? 4 years 4 months ago #54279

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I'm actually not comparing Dapsone to Rituxan or any other treatment. The point is addressing underlying causes and none of the treatments do that. If Dapsone did, we'd see more remissions or there would be more studies showing the benefits of Dapsone long term. We're not seeing that.

I knew one person years ago who took Dapsone long term. She took it for a few years. She was not cured. It made me feel like I had the flu. I had fever, chills and aches. I thought it was coincidence so I stopped the drug and tried it again two weeks later. Same thing. I gave up on it. Wasn't worth it.

I know that all antibiotics do not work the same way, but you'd think that of all the antibiotics that are prescribed, there would be a few that did work similar to Dapsone. Or, a certain antibiotic might work if someone had a different bacterial underlying cause. We're not seeing benefits from any antibiotics, not even by chance.

We used to discuss mycoplasma here years ago. I think there is probably something to that, but it never got anywhere. Long term antibiotics can cause harm and benefits have not been seen long term, even with Dapsone, so I'm still not convinced.

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Dapsone > Lyme disease > ITP connection? 3 years 7 months ago #57945

  • Hal9000
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Ok, 'toys in the attic' comment forthcoming.

Reports seem to indicate Dapsone causes reactivation of latent/dormant Epstein Barr virus (EBV) (aka mononucleosis).
factmed.com/study-DAPSONE-causing-EPSTEIN-BARR%20VIRUS%20INFECTION.php

It is believed that the dormant virus lives in the B cells of bone marrow.
en.wikipedia.org/wiki/Epstein%E2%80%93Barr_virus#Transformation_of_B-lymphocytes

If the virus is reactivated (from Dapsone) that would mean the immune system would begin fighting the active/replication phase of the virus - which is a totally different fight then the latent phase.
en.wikipedia.org/wiki/Epstein%E2%80%93Barr_virus#Lytic_replication

So how to explain the mechanism of Dapsone on ITP? Perhaps the immune system fighting the EBV replication phase somehow causes Treg - Thelp balance in the platelet/TPO antibody immune complex. This might suggest the Epstein Barr virus was in the cascade of influences which caused the ITP disorder condition initially.

A quick Goo-Foo search indicates about 30% of the ITP population have (latent) EBV. It would be interesting to see a study as to whether those with a complete response to Dapsone (or perhaps steroids) universally have EBV.

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Dapsone > Lyme disease > ITP connection? 3 years 7 months ago #57946

  • Rob16
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Hal,

Read this and see if you can connect the dots:

link.springer.com/article/10.1007/s12016-007-8010-9
A Complex Interaction Between Drug Allergy and Viral Infection

Also, note the other herpes viruses that may be involved: HHV-6, HHV-7, CMV.

Oh, and this: There is a form of drug-induced hypersensitivity syndrome called dapsone hypersensitivity syndrome, and it is one of the main risks of using dapsone. Could it be caused by dapsone-related viral reactivation?

Edit: Corrected typo. HHV-6, not JJV-6

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Dapsone > Lyme disease > ITP connection? 3 years 7 months ago #57947

  • Hal9000
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Well done Rob. Very well done. The 'pit bull' term does apply. Got your teeth all the way in with that one. If I've got the dots right now, I'm barking up the wrong tree. Apparently my premise, reactivation of EBV, is the exception and not the rule. Therefore my conclusion is baseless.

Is that what you were thinking, or is there something else too?

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Dapsone > Lyme disease > ITP connection? 3 years 7 months ago #57950

  • Rob16
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Hal9000 wrote: Is that what you were thinking, or is there something else too?

Actually, I was too tired to make any sense of it but thought you might find it interesting and perhaps connect the dots for me!
:)

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Dapsone > Lyme disease > ITP connection? 3 years 7 months ago #57954

  • Hal9000
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LOL, that abstract was poorly written. I see you are very capable of resolving problems while dreaming. :)

I have to warn you. I've finished playing with toys up in the attic. Am now ready to do a little tree climbing and 'go out on a limb'. You've been warned, LOL

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