Hidradenitis Suppurativa

[Yas]

Very sorry to hear about this, Yas! Hang in there. I think you are doing all you can. Cold baths may also help. Keeping the boils drained is important too, as you say, especially the osmogel because it pulls stuff out, instead of pulling it further into the body (I don't know whether DMSO does that or not). Guillem also recommends never squeezing the boils (that can cause more pressure on one side and create a fistula). Only draining them out.

Yes, osmogel seems to pull the stuff out and then there's a wound that remains open so DMSO helps with that.

I can't even think of squeezing the boil because it is painful even without touching it.

I've been taking cold baths and holding the water in the area for a few minutes. That also helps alleviate the uncomfort.

Concerning the fistulas, what Guillem actually does is, once the patient is under anesthesia, he injects a contrast solution right inside the boil, and watches to see if it spreads around in tunnels (that would be the fistulas). I think it's important to say this to your doctor. Atreides actually had a boil removed "completely", and a month later it flared up again. When we found Guillem, he had to cut that area again, and get to the fistulas, so that it would take care of the entire network of risky areas.

Thanks for this information, I will discuss it with the doctor.

Oh, even if the surgery is only in December, make sure you have pictures. I don't know whether your doctor will do it or not, but Guillem uses the pictures as a reference and, if there are flare ups in the same area, and when the patient goes see him there is no inflammation, he stills injects the contrast solution there to check that it's not just "boiling inside". Usually he will do that if the patient has had a boil in the same area twice (once is not enough to worry, he says).

Yes, the doctor asked me to keep record of flare ups with photos and I'm doing that. He also said that he only does the surgery when boils appear in the same place four times or more. In my case it's been 10 times or so only in the last 2 months... :(

Thanks Chu!

A to you too!

 

[l apprenti de forgeron]

Hang in there, Yas!. You are doing it very well for improve your health, which is admirable.

 

[Laura]

Bless your heart, I know how you are suffering and hope with all my heart that you come to a resolution of this very soon.

Diet helps a lot, but the main thing we have observed with Atriedes condition is that stress is a primary trigger. And HS IS an autoimmune thing. So when stress activates the cytokines or whatever, the ball gets rolling. If you look at it as an autoimmune condition, then finding those things that tend to calm down other AI conditions can help: diet, supplements, things like low-dose doxycycline, etc. You can break zinc tablets up into smaller doses and take them throughout the day. It really helps.

 

[Chu]

Forgot to tell you to let us know if you need more Osmogel soon, and we'll ship it to you!

Have you read "When the Body Says No", by Gabor Mate? He makes some very interesting points that you can extrapolate to HS.

 

[Yas]

Thank you so much Chu, Laura and I apprenti de forgeron.

Don't you worry... I'm alright and I'm handling it. I still have plenty of Osmogel, but I can't find the second one I had. It got lost when moving from one house to another... but I'll find it. :)

Zinc is really helping. I took a smaller dose today and didn't feel sick so I'll be taking it like that.

I think that I should also restart exercise since it seems to help with cytokines.

Well.. that's it! Don't worry please. I will let you know of any updates. Thanks again.

 

[Horseofadifferentcolor]

A big bear hug to you Yas. Take care and like Laura said stress is a major part of it. I know it is easier said than done but try to keep away from anything that is stressful. A product called Calmoseptine helps a lot with discomfort.

 

[Oxajil]

Take good care of yourself Yas! In case it helps, I've found that a cold shower in the morning strengthens the immune system for many hours during the day. Hope the condition will continue to improve

 

[SeekinTruth]

Don't know if it matters for HS, but is there an optimal form(s) of zinc? Some are much more bioavailable than others generally. Like zinc picolinate and orotate, but also zinc monomethionine are very good. Also, just a reminder that when supplementing zinc, it is important to take a bit of copper (a trace mineral measured in micrograms) about once a week (a few hundred mcg) - this can be done skipping zinc one day a week or taken away from zinc doses that day. Otherwise there can develop a copper deficiency/imbalance.

Hope you get well soon, Yas.

 

[Yas]

Thank you guys! You're head ups help a lot!

Don't know if it matters for HS, but is there an optimal form(s) of zinc? Some are much more bioavailable than others generally. Like zinc picolinate and orotate, but also zinc monomethionine are very good. Also, just a reminder that when supplementing zinc, it is important to take a bit of copper (a trace mineral measured in micrograms) about once a week (a few hundred mcg) - this can be done skipping zinc one day a week or taken away from zinc doses that day. Otherwise there can develop a copper deficiency/imbalance.

Hope you get well soon, Yas.

I didn't know that SeekingTruth! I'll get some copper then. Thank you!

 

[NevadaCat]

Sorry to hear, I've battled my share of boils and flare ups. They show up in times of stress, for me. I've been lucky for the past year or so after eliminating wheat. What did work on some of the really nasty ones, that remained "blind" and hurting for a long time, was an Epsom Salt Bath soak for a long time and then immediate application of a drawing salve containing ichthamol. It's an old remedy for them.

I have a pot of Kiehl's acne remover, a blue paste that has the ichthamol in it, that works best. It really stinks, i think it's a by-product of shale production but it's an old remedy used by my family for a long time.

 

[Yas]

Sorry to hear, I've battled my share of boils and flare ups. They show up in times of stress, for me. I've been lucky for the past year or so after eliminating wheat. What did work on some of the really nasty ones, that remained "blind" and hurting for a long time, was an Epsom Salt Bath soak for a long time and then immediate application of a drawing salve containing ichthamol. It's an old remedy for them.

I have a pot of Kiehl's acne remover, a blue paste that has the ichthamol in it, that works best. It really stinks, i think it's a by-product of shale production but it's an old remedy used by my family for a long time.

I'm glad to hear that the problem was for you solved by not eating wheat. At the moment, it seems that the trigger isn't wheat in my case, because I'm gluten-free for at least two years by now. What I noticed is that stress really IS a trigger in my case, and also... I was using a lot of stevia in fat bombs, teas, etc... Last week I stopped using stevia and the inflammation has been down for longer that it's been lately, so I suspect that was triggering it as well... Nevertheless, now there's a painful lump under the skin in another place, not even close to the usual place, so I won't say it's a victory yet. :/

Anyway, I'm reading the Hidden Plague and it's a very interesting book indeed, it gives a lot of helpful advice.

Thanks for your tips, NevadaCat :)

 

[NevadaCat]

Truly hope you feel better and can conquer this. I am getting this book right away! After reading Tara's blog and a link to chapters in the her book on another website, she is definitely on to something regarding trigger foods way beyond eliminating wheat, etc and tying in leaky gut and dysbiosis and the rest of the plagues of modern diet.

 

[Horseofadifferentcolor]

Yas, I thought I would point out this. It is information for Ebola, but this part caught my attention. When the tunnels start forming from these and create fistulas, they can rupture causing a bunch of bad bacteria to be released in the blood stream causing sepsis. All my surgeries here in the U.S. were treated as an emergency because of this reason, to protect my organs. I think you said your surgery was not till December? Anyways, I thought this might be one more protocol to add to the list incase you were not taking it already. I had never heard that melatonin had this use. It is good to know.

http://cassiopaea.org/forum/index.php?topic=35034.270;topicseen



The purpose of this report is to emphasize the potential utility for the use of melatonin in the treatment of individuals who are infected with the Ebola virus. The pathological changes associated with an Ebola infection include, most notably, endothelial disruption, dissiminated intravascular coagulation and multiple organ hemorrhage. Melatonin has been shown to target these alterations. Numerous similarities between Ebola virus infection and septic shock have recognized for more than a decade. Moreover, melatonin has been successfully employed for the treatment of sepsis in many experimental and clinical studies. Based on these factors, since the number of treatments currently available is limited and the useable products are not abundant, the use of melatonin for the treatment of Ebola virus infection is encouraged. Additionally, melatonin has a high safety profile, is readily-available and can be orally-self administered; thus, the use of melatonin is compatible with the large scale of this serious outbreak.

 

[Chu]

I hope this new one is not too much of a problem, Yas. Take care!!! And thanks for sharing what worked for you, NevadaCat. So sorry to hear that you also have had problems with this.

I think that HS is giving us some important clues as to how autoimmune diseases really work. Some other problems get resolved with the ketogenic (or gluten/dairy/night shades-free diet), but in this case, it seems that stress is even more of a trigger. Or perhaps things "boiling inside" emotionally. And a combination of all. So, dealing with the problem from different angles can only help, I think.

 

[Yas]

Yas, I thought I would point out this. It is information for Ebola, but this part caught my attention. When the tunnels start forming from these and create fistulas, they can rupture causing a bunch of bad bacteria to be released in the blood stream causing sepsis. All my surgeries here in the U.S. were treated as an emergency because of this reason, to protect my organs. I think you said your surgery was not till December? Anyways, I thought this might be one more protocol to add to the list incase you were not taking it already. I had never heard that melatonin had this use. It is good to know.

http://cassiopaea.org/forum/index.php?topic=35034.270;topicseen

Thanks Horseofadifferentcolor, I've seen that, yeah! I usually take melatonin for a better sleep. ;)

I hope this new one is not too much of a problem, Yas. Take care!!! And thanks for sharing what worked for you, NevadaCat. So sorry to hear that you also have had problems with this.

I think that HS is giving us some important clues as to how autoimmune diseases really work. Some other problems get resolved with the ketogenic (or gluten/dairy/night shades-free diet), but in this case, it seems that stress is even more of a trigger. Or perhaps things "boiling inside" emotionally. And a combination of all. So, dealing with the problem from different angles can only help, I think.

Don't worry Chu! It seems that it was just a false alarm, it is gone today :) I'm trying to be extremely careful with what I eat so that I can detect possible triggers.

About the boiling inside... well... that actually describes a bit of my inner landscape right now, but I'm trying to be consistent with EE so that I can process all that without stress cytoquines flooding my body. And...