Just an update for everyone. [My Dapsone Journey]

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LymeSick 🌟
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Date Joined Aug 2017
Total Posts : 234
   Posted 2/20/2018 2:53 PM (GMT -6)   
Hi everyone,

So I just wanted to give an update after my last post here.

After many attempts of getting better with herbs and antibiotics, as detailed in my previous post a few weeks ago. And after much thinking, I have decided I will soon be beginning the following protocol:

- Doxycycline
- Rifampin
- Dapsone

And to be safe:

- Folic acid (for possible anemia from dapsone)
- Blood work every 2 weeks (for possible anemia from dapsone)

I thought some of you might want to know. You guys were so nice to me last time.
I know this is a pretty aggressive treatment, but I just can't live with this Lyme anymore.

Please keep me in your prayers if you can. Thank you so much.

Any tips will be greatly appreciated.

Thank you.

Post Edited (LymeSick 🌟) : 3/10/2018 12:03:22 PM (GMT-7)


RedLabel
Regular Member


Date Joined Feb 2017
Total Posts : 216
   Posted 2/20/2018 3:21 PM (GMT -6)   
I really hope this will help you. Good luck on your new protocol
Lyme, CPN, Yersinia, Coxsackie, CMV and Bartonella after LLMD visit.
CD57 0, 2, 0, 3

Started treatment in May 2017
Currently on Azithromycin, Doxycycline, Plaquenil, Rifampicin, Delimmun

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2123
   Posted 2/20/2018 3:57 PM (GMT -6)   
Hi Lyme sick,

I wish you the best on your new treatment plan!!! I will be praying for you and remember to detox and take probiotics too.


Take care and thanks so much for updating us, Jo

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1134
   Posted 2/20/2018 8:07 PM (GMT -6)   
Hello, LymeSick 🌟:

I wish you luck with your new protocol. I've read some of your recent posts and know you've been having an incredibly difficult time. I pray that the changes will yield only great results.

I also wanted to remind you that Folic Acid and Folate are not the same. If you're sure that you don't have any trouble converting Folic Acid into Methylfolate, then no problem. If you're unsure, then you may wish to supplement with L-Methylfolate (5-MTHF).

From Ben Lynch, ND:

"Supplemental and enriched folic acid foods should be avoided by those afflicted with MTHFR C677T mutations because the MTHFR mutation has partially destroyed the MTHFR enzyme which is required to process folic acid completely.

Natural foods with folate should be consumed by all with MTHFR mutations as food folate helps make other forms of folic acid which are needed for various functions.

Those with C677T MHTFR mutations do not process folic acid into 5-MTHF.

If folic acid does not turn into 5-MTHF, folic acid levels build up. Elevated folic acid has potential to stimulate pre-existing cancer cells.

That said, it is unwise to provide supplemental folic acid to anyone with MTHFR C677T mutations.

However, what one should understand is there is an already methylated, active form of folic acid available. This is L-5-MTHF and is available via supplement form over the counter and is also available by prescription only."


Just FYI.

All the best,
The Dude

NicHostetler
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Date Joined Mar 2017
Total Posts : 622
   Posted 2/21/2018 9:01 AM (GMT -6)   
LymeSick 🌟 said...
Hi everyone,

So I just wanted to give an update after my last post here.

After many attempts of getting better with herbs and antibiotics, as detailed in my previous post a few weeks ago. And after much thinking, I have decided I will soon be beginning the following protocol:

- Doxycycline
- Rifampin
- Dapsone

And to be safe:

- Folic acid (for possible anemia from dapsone)
- Blood work every 2 weeks (for possible anemia from dapsone)

I thought some of you might want to know. You guys were so nice to me last time.
I know this is a pretty aggressive treatment, but I just can't live with this Lyme anymore.

Please keep me in your prayers if you can. Thank you so much.

Any tips will be greatly appreciated.

Thank you.


If you ask Horowitz he will tell you that

1. You will likely experience a terrible herx from Dapsone and
2. This is the closest thing to a "cure" for Lyme.

The combo really hits everything which is why I think it is so successful in people with persistent Lyme.

I asked my LLMD a few months ago if I could do this and she said no unless we sit and really discuss how dangerous this could be. Sounds like you are getting labs done every 2 weeks to look for anemia which is awesome.

I, personally, am very excited for you. I believe Horowitz when he says that this is the best combo to heal persistent Lyme patients.

Please please please keep us updated on progress!!

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2502
   Posted 2/21/2018 9:45 AM (GMT -6)   
What is your dosage on the dapsone? I would not start out high. There's a dapsone group on FB that you could join. I think some start out pulsing it at low dose. I believe Dr. H says 100 mg is the goal but nobody knows for sure if lower dosages are effective.

Spanish
Regular Member


Date Joined Sep 2017
Total Posts : 137
   Posted 2/21/2018 1:29 PM (GMT -6)   
Good luck please keep us posted!

1000Daisies
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Date Joined Apr 2016
Total Posts : 2438
   Posted 2/22/2018 9:28 AM (GMT -6)   
Wishing you the very best! Please do keep us posted on your progress!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 276
   Posted 2/22/2018 4:04 PM (GMT -6)   
I would be very interested to hear how the dapsone works out. Is it supposed to have side effects? I've haven't heard much about it.

HealMe123
New Member


Date Joined Feb 2018
Total Posts : 10
   Posted 2/22/2018 5:21 PM (GMT -6)   
Wishing you the best of luck!

I just started on a protocol with Dapsone and (a drug similar to) Rifampin as well - Rifabutin....

Pulsing Dapsone (5 days a week) - gradually building (25 mg/day first week, 50 mg/day second week, 75 mg/day third week, and 100 mg/day thereafter)

Taking Rifabutin everyday - Adding in pyrazinamide next week!
Before starting the dapsone, I had 3 weeks of only Coartem.....

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 2/26/2018 3:27 AM (GMT -6)   
Hi everyone.

I just wanted to thank everyone so much for their responses.

I'm not feeling very well right now, so responding to everyone individually is very hard.

Please know that I read every comment and that they were very helpful to me. Thank you so much.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32680
   Posted 2/26/2018 10:28 AM (GMT -6)   
Sorry you’re not feeling well - hang in there. Sending you well wishes and hope you feel better soon
(((Hugs)))
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 3/8/2018 9:58 PM (GMT -6)   
Thank you all so much!

Quick update:

After much delay, I finally took my first Dapsone dosage an hour ago (50mg).

No Rifampin or Doxycycline yet, I think I'm going to add them in slowly if needed, but I want to see what the Dapsone does first.

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 3/8/2018 10:00 PM (GMT -6)   
Oh and Stevia! I took some Stevia. Not sure if it's proven to help, but I figured it won't hurt.

ChickenArise
Veteran Member


Date Joined Nov 2015
Total Posts : 1507
   Posted 3/8/2018 10:13 PM (GMT -6)   
Hi LymeSick,

I wanted to send you good healing vibes and wish you excellent results on your new protocol. Please keep us up to date on how you are doing.

2014 Mold Sick,2015 Clinical Lyme and co.,2016 Morgellons,2017 Remission
YT: ClintFromNYtoVA2
Twitter: @ClintFromNYtoVA
Blog: www.fascinatingtimetobealive.blogspot.com/
" The path to disappointment is paved with expectations "

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 3/9/2018 9:18 AM (GMT -6)   
Thank you so much ChickenArise!

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2438
   Posted 3/9/2018 9:37 AM (GMT -6)   
I am totally rooting for you and hoping for the very best for you!!!

FWIW, we did a several week trial of stevia but did not see any results/effects (good or bad) from doing it. The results/feedback on this board are so-so. I know of one person with severe neuro issues and strongly reacted to just one drop of it.

Having said all of that, our functional medicine MD uses it and sees good results from doing so.
So, I really hope it helps you!

{{{HUGS}}}
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32680
   Posted 3/9/2018 11:29 AM (GMT -6)   
bumping for more views.


This is a new protocol - not many here have taken the Dapsone.


Thanks for posting LymeSick...I hope this protocol works for you.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 3/9/2018 12:36 PM (GMT -6)   
1000Daisies thank you so much!!!!!! I will keep that in mind about Stevia, maybe if I try on some days, and then go without on other days, I can figure out if it works. Thank you again!

Girlie thank you too!!!!! I really appreciate all your comments. I will use this thread to keep posting updates.

Today was Day 2 of Dapsone 50mg.

So far, I've been herxing (muscle cramps in upper legs), which is a typical herx for me. Pretty happy about it actually, it must be working or doing something.

Other than that, my body has been tolerating it very well, no side effects at all.

Depending on how it goes, I might build up to the 100mg dosage relatively fast. It seems my body isn't really having an issue with it.

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1522
   Posted 3/10/2018 4:14 AM (GMT -6)   
dapsone is probably the single best lyme treatment that you can take right now. that and vancomycin are the best working antibiotics. good luck and glad to hear you are not having side effects from it. make sure you take copious amounts of folic acid while under treatment with dapsone.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32680
   Posted 3/10/2018 11:13 AM (GMT -6)   
mpost said...
dapsone is probably the single best lyme treatment that you can take right now. that and vancomycin are the best working antibiotics. good luck and glad to hear you are not having side effects from it. make sure you take copious amounts of folic acid while under treatment with dapsone.


Folic acid...or Folate?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1522
   Posted 3/10/2018 11:30 AM (GMT -6)   
Girlie said...
mpost said...
dapsone is probably the single best lyme treatment that you can take right now. that and vancomycin are the best working antibiotics. good luck and glad to hear you are not having side effects from it. make sure you take copious amounts of folic acid while under treatment with dapsone.


Folic acid...or Folate?


Folic acid is a synthetic form of folate...
/www.healthline.com/nutrition/folic-acid-vs-folate

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32680
   Posted 3/10/2018 12:25 PM (GMT -6)   
mpost said...
Girlie said...
mpost said...
dapsone is probably the single best lyme treatment that you can take right now. that and vancomycin are the best working antibiotics. good luck and glad to hear you are not having side effects from it. make sure you take copious amounts of folic acid while under treatment with dapsone.


Folic acid...or Folate?


Folic acid is a synthetic form of folate...
/www.healthline.com/nutrition/folic-acid-vs-folate


And..shouldn't it be the Methyl-Folate we take ? or does it depend on what your genetic makeup is?

My LLND told me I should take the Methylated B's. maybe that was bad information.....(I've not had my genetic testing done)

So when someone is on Dapsone...should the folate levels be checked once a month?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 3/10/2018 12:53 PM (GMT -6)   
It's confusing to me too. I bought the 5-MTHF version, but it's only 300 mCg (not even MG).

My plan is to do testing in a week, and find what dosage works for me.

Horowitz suggests at least 30mg, but I find that a bit high to start of with.

This is from his book:

++++++++++++++++++++++

For my most resistant patients I now use several different combinations of intracellular drugs, including combinations of tetracyclines (minocycline and/or doxycycline), rifampin, macrolides (Zithromax or Biaxin), and Dapsone (two to three intracellular drugs, occasionally four), combined with Plaquenil and grapefruit seed extract (two cyst-busters), pulsed cell-wall drugs (Ceftin, Omnicef, penicillins or IV Rocephin), nystatin (for preventing yeast), biofilm busters (like Serrapeptase, Stevia, and monolaurin, which is a coconut oil extract), with extra folic acid to help prevent side effects of Dapsone. I use Leucovorin, a pharmaceutical folic acid, and a nutraceutical high-strength activated folic acid from Xymogen called 5-MTHF-ES (5-methyltetrahydrofolate extra-strength) or Folify-ER. A total of at least 30 mg of folic acid a day must be used (sometimes higher, i.e., 45 to 60 mg/day) to minimize the anemia associated with Dapsone. Average decreases in hemoglobin of about 2 to 3 grams can be expected with Dapsone using the above doses of folic acid, which stabilizes over time. Deplin (L-methyl folate) can also be included in the protocol.
Although Dapsone can be effective, it is not a benign drug without side effects, and the risks/benefits must be discussed with the patient. There are four main potential side effects—Herxheimer reactions, Anemia, Rashes and Methemoglobinemia—that can be remembered with the acronym, Do No “HARM.”
Herxheimer (JH) reactions are seen in the majority of patients using Dapsone, and they can be severe, in which case the dose will need to be temporarily decreased or held for several days, especially if the JH reactions persist despite using LDN, high-dose glutathione with NAC, alpha-lipoic acid, alkalizing the body and drainage remedies. Some patients take months to get to the full Dapsone dose secondary to severe JH reactions, but they still improve significantly over time. Although the full dose (100 mg per day) was the most effective dose in our studies to date, severe Herxheimer reactions with other intracellular medications may require starting at a low initial dose (25 mg every other day), and slowly increasing the dose (i.e., 25 mg/day for one to two weeks, then 50 mg alternating with 25 mg for one to two weeks, then 50 mg/day for one to two weeks (the minimum effective dose), until slowly getting to the full dose.
Another side effect is anemia, secondary to Dapsone interfering with folic acid synthesis. This will cause the size of red blood cells to increase, causing a macrocytic (large cell) anemia, which is the most common form of anemia seen with the drug. Rarely, Dapsone can cause a hemolytic anemia (where the red blood cells burst). You will need to initially have blood drawn every two to three weeks on the protocol (CBC, CMP, occasionally checking a Coombs direct antibody for hemolytic anemia) and consider getting checked for G6PD (glucose 6 phosphate dehydrogenase) deficiency, which can be an overlapping cause of hemolytic anemia. Certain antibiotic/antimalarial medications as well as ingestion of fava beans can cause anemia in people who are G6PD-deficient. Even though hemolytic anemia is possible with Dapsone, we have not witnessed it in over four hundred patients on the protocol. Once patients stop Dapsone, the anemia usually reverses and goes back to baseline levels within a month, as long as folic acid supplementation continues and there are no overlapping causes of anemia.
I also suggest treating iron deficiency anemia before starting Dapsone, and following iron levels (iron, TIBC [total iron binding capacity], and ferritin) in women of childbearing age, since heavy menstrual periods and iron loss will worsen anemia. Any woman prone to heavy menses must be on iron and contact her healthcare provider if there is any heavy bleeding, which may require stopping Dapsone, increasing folic acid, and increasing iron intake. Since Dapsone will cause on the average a 2 to 3 gram drop in hemoglobin (rarely more), women should aim to have an initial starting hemoglobin of at least 13 grams/dL, so as to not drop below 10 grams/dL. Despite the anemia, many women report that their energy level is significantly better!
Another side effect of Dapsone is rashes. It is a sulfa drug, and may cause a rash in those who are sulfa sensitive, although we have seen patients who can’t tolerate Bactrim, another sulfa drug, who can take Dapsone without any side effects. If you are sulfa sensitive, and the risk/benefit ratio requires doing a trial of Dapsone due to having failed multiple other antibiotic protocols, discuss with your healthcare provider using an H1 blocker (Zyrtec and/or Benadryl) with an H2 blocker (Zantac) prior to starting treatment, which may keep down side effects of rashes and itching. If, however, there is a history of severe sulfa allergies, it may be best to avoid the drug.
The last, significant side effect of Dapsone is methemoglobinemia. This is where the hemoglobin in our red blood cells, which carries oxygen, is exposed to increased oxidative stress and oxidizes the iron molecules so that they can’t effectively release oxygen to the tissues. This can rarely cause a “blue man/woman syndrome” where the lips and extremities turn blue due to low oxygen levels (hypoxia), with shortness of breath. This will usually not happen with methemoglobin levels below 10 percent, although levels between 5 and 10 percent can occasionally cause symptoms of fatigue, dizziness and shortness of breath. Levels below 5 percent are usually asymptomatic. Methemoglobinemia can resolve rapidly within twenty-four hours of stopping the drug and increasing folic acid with antioxidants. A pulse oximetry checking oxygen levels is a good screening test, and methemoglobin levels should be checked periodically during treatment. I therefore recommend high-dose antioxidants (like resveratrol, and/or curcumin), with liposomal glutathione, NAC and alpha-lipoic acid, since glutathione has been shown to be an alternative pathway to reverse methemoglobin. In severe cases, supplemental oxygen with a methylene blue 1 percent solution (10 mg/ml, at 1 to 2 mg/kg intravenously slowly over five minutes) can be used to quickly reverse methemoglobinemia. Tagamet (yes, the H2 blocker) can also be used to treat elevated methemoglobin levels. We have fortunately only seen high methemoglobin levels in a handful of patients (especially if they were using oxidant therapies on their own, such as ozone), and stopping Dapsone and reintroducing it at lower levels when the methemoglobin returns to normal, while avoiding pro-oxidant therapies with more glutathione support, has generally prevented a recurrence.
Despite the potential side effects, we have found Dapsone to be safe and effective. We don’t yet know if 50 mg versus 100 mg of Dapsone per day is superior when used in long-term combination therapy (higher doses of Dapsone usually have greater efficacy in our clinical studies), or the length of time of treatment required to effect a “cure” (if it is possible), or which combination of meds will produce the best long-term results. We are also not sure about the success rate once the drug is stopped at twelve months (which is the time frame of our ongoing study). This is the same length of time required to treat other persister bacteria like leprosy with rifampin and Dapsone. Why did we choose twelve months? We tried stopping Dapsone at two months, but symptoms relapsed. We tried again at four and six months, but the same thing happened, although symptoms were clearly better than when they started, with some patients getting neurological improvements not seen with other drugs. One woman could text and use her thumbs, which had been almost paralyzed from Lyme and Bartonella; another had been sick for twelve years, and her brain fog, joint, and muscle pain improved as she went from 20 percent to 80 percent of normal within a few months. One man with severe neuropsychiatric symptoms (psychosis) who failed all antibiotics and antipsychotic medications after taking Dapsone at 25 mg QOD for two weeks, woke up and started speaking normally after a severe Herxheimer reaction. Unfortunately, the beneficial effect didn’t last when the drug was stopped, and we are re-evaluating using Dapsone at higher doses with more detox support. Clearly, mycobacterium “persister” drugs like Dapsone are acting differently than other intracellular antibiotics I have used.
We have had some patients relapse at six months using lower dosages, and others who took it for seven months with other intracellular drugs who remained symptom-free. Some patients had greater clinical improvements with the Dapsone protocol than with any other drug regimen, but had PCR evidence of Lyme and Bartonella midway during therapy. We are therefore evaluating different dosages, combinations, and lengths of therapy. The combinations that seem to be the most effective usually involve taking Dapsone with a tetracycline and macrolide (Zithromax or Biaxin) or a tetracycline with rifampin, but there are some severely ill patients who failed multiple protocols who are on four-drug intracellular regimens (pulsing rifampin and Zithromax, with regular use of minocycline or doxycycline with Dapsone) who are doing extremely well. All of these patients were on Plaquenil and grapefruit seed extract (GSE) for cyst forms, pulsed cell-wall drugs (Ceftin or Omnicef) three days a week (Monday, Wednesday, Saturday) with nystatin BID (for yeast), and biofilm busters (Serrapeptase, Stevia, and/or Lauricidin).
By following this protocol, many of my sickest patients, as well as my Herx kings and queens, have started to improve. We have enrolled over four hundred patients on the Horowitz Dapsone protocol, and the vast majority are improving. Patients who have been sick for many years (five to forty) have reported that this was the best regimen they had ever taken. If you have failed classical protocols and you are disabled from tick-borne disorders, with chronic fatigue, pain, neuropathy, and memory/concentration problems, as well as sweats and chills (chronic babesiosis), then have an informed conversation with your healthcare provider. If you follow the above recommendations, Dapsone may help you.

++++++++++++++++++++++

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 3/10/2018 1:00 PM (GMT -6)   
My own update:

Day 3 of Dapsone

Moved up to 100mg of Dapsone since my body is tolerating the Dapsone very well. Still no side effects besides headache and a bit of weakness. Herx was suddenly gone today, which is a bit concerning. Not sure what that means.

I'm also taking 5-MTHF throughout the day, approximately 8 pills of 300 mCg.

Still taking Stevia but don't feel like it's doing anything.

Post Edited (LymeSick 🌟) : 3/10/2018 12:05:21 PM (GMT-7)

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