Hidradenitis Suppurativa

[Yas]

Just giving an update here...

The scars healed quite fast and I'm really glad I don't have those two constant boils that caused lots of discomfort.

Yet, three months after the surgery, I was feeling pain in the scars in the week previous to my period, and I know that women normally get the boils just before or after their period so there is something related to hormones there. Also, Stevia was one of my major triggers and I'm connecting it to the hormone factor because of what I've found in The Paleo Mom website:

Steviol glycosides are synthesized in the same pathway and end up being structurally very similar to the plant hormones gibberellin and kaurene. This means that steviol glycosides have a hormone structure. The majority of toxicological studies establish that stevia is safe, however there are some studies showing that it can act as a mutagen and may increase the risk of cancer (these studies are in the minority and tend to use quite high concentrations, so they are readily discarded in discussions of the overall safety of consuming stevia). Whether or not stevia causes genetic mutations is not the only cause for concern, however (even if safety studies focus on this particular property). For those with autoimmune disease, in which hormones have such a dramatic impact on disease development and progression, the impact of consuming stevia on hormone regulation is relevant.

There is evidence that steviol glycosides have contraceptive effects in both males and females. In particular, one specific steviol glycoside, called stevioside, has been shown to have potent contraceptive properties in female rats, implying that stevia may have an impact on estrogen, progesterone or both. In another study, male rats fed stevia extracts showed a decrease in fertility, reduced testosterone levels and testicular atrophy, potentially attributable binding of steviol glycosides with an androgen receptor. Although no studies have been conducted evaluating the impact of stevia on fertility in humans, the stevia plant was traditionally used to control the fertility of women by the Guarani Indians in southern Brazil. While small and occasional consumption of stevia likely has little to no impact on general health, it should not be consumed on a regular basis especially by those with altered hormone balance and dysfunctional immune systems.

So, maybe I have an altered hormone balance and that's why HS is very linked to my cycle (that's not the case for everyone)

Well... the thing is that I started feeling pain in the scars in those days, and then I had another painful lump quite close to surgery area... so I decided to get serious about the autoimmune protocol (I've been doing KD for a while but I hadn't really done an elimination diet to know which were my triggers in a more precise way) and EE to lower my stress levels. I also started taking lots of supplements again, including the Oak Wood Extract recommended by Gaby in the Ketogenic Diet thread. I also started doing some exercise again.

I've been doing this for a little more than a month and this month I didn't feel any pain in my scars, and I also didn't have any lumps, so I suppose it is working. I don't know which is the most important factor in the things that I've been doing but I'm happy to see that it is actually having a good result. That's why I keep you posted about it, in case someone with HS finds this thread. :)

Nevertheless, it's still too early to call it a victory because, according to the book The Hidden Plague, it can happen that you are one month without HS and then the next month you have it again. She says that we should be in a period of 6 months to 1 year without a flare up to consider that HS is in remission. So I'll be observing and hoping that I can call it a remission in 6 months from now.

 

[Chu]

Thank you for these good news, Yas! And I hope that it works, and that it goes on for more than just this month.

 

[SeekinTruth]

Good news, thanks for sharing, Yas. I'm hoping you lick it for the long term, too. :)

 

[Gaby]

Thank you for sharing, Yas!

IMO, the stevia research is very important. Plants can be evil!

 

[Horseofadifferentcolor]

Yas, I hope this is the last you see of this. Good to hear your new routine is working. Figures stevia is bad for some people. I forced myself to like that stuff for my sweet fix early on in the diet changes. Makes me wonder if I did more damage than good trying to do the right thing by abandoning sugars and replacing with stevia. There are so many hidden dangers out there parading around as healthy alternatives. Thank you for sharing.

 

[Meg]

That's great news, Yas! The stevia information was really helpful as well. I hope you keep getting better and better. :)

 

[Alana]

I am glad you found a culprit, Yas! and I hope you are flare-up free for the next 6 months. Let us know how it goes.

Yas, I hope this is the last you see of this. Good to hear your new routine is working. Figures stevia is bad for some people. I forced myself to like that stuff for my sweet fix early on in the diet changes. Makes me wonder if I did more damage than good trying to do the right thing by abandoning sugars and replacing with stevia. There are so many hidden dangers out there parading around as healthy alternatives. Thank you for sharing.

Yes, that's why is so important to try each food item for a period of time first, then go off it for at least 3 weeks, and then reintroduce it. It is so hard to know otherwise what is good for us and what is not. And each person has such a very individual reaction, we can never say: oh, if him/her eats it, then I can eat it too. There are so many things my husband can have without adverse reaction for example, that I can't. And there are the odd things here and there that I am fine eating, but my husband is allergic to. And sometimes the reaction takes a few days to show, so you have to guess and experiment to find out which was the "evil" food/substance. It's a tedious process, but better safe than sorry in the end.

 

[Voyageur]

Thanks for the update, Yas.

FWIW, when reading what you wrote, my eyes picked up a book my partner has on essential oils, so I looked in the index for HS. Although not directly found, hair follicles and boils came up. I checked on this thread for what was used with success, and it was not mentioned. So what it says in this book is to apply Lemon Oil (essential oil). It states that the next day it turned black and drained and then abated and disappeared.

It might be something to further research.

 

[Yas]

Thank you all for your encouragement! :)

I am glad you found a culprit, Yas! and I hope you are flare-up free for the next 6 months. Let us know how it goes.

Yas, I hope this is the last you see of this. Good to hear your new routine is working. Figures stevia is bad for some people. I forced myself to like that stuff for my sweet fix early on in the diet changes. Makes me wonder if I did more damage than good trying to do the right thing by abandoning sugars and replacing with stevia. There are so many hidden dangers out there parading around as healthy alternatives. Thank you for sharing.

Yes, that's why is so important to try each food item for a period of time first, then go off it for at least 3 weeks, and then reintroduce it. It is so hard to know otherwise what is good for us and what is not. And each person has such a very individual reaction, we can never say: oh, if him/her eats it, then I can eat it too. There are so many things my husband can have without adverse reaction for example, that I can't. And there are the odd things here and there that I am fine eating, but my husband is allergic to. And sometimes the reaction takes a few days to show, so you have to guess and experiment to find out which was the "evil" food/substance. It's a tedious process, but better safe than sorry in the end.

Yes, I've actually done a table in word document to keep track of this, following the suggestion in The Hidden Plague, maybe that's not necessary for everyone, but in my case it helps a lot.

So what I did is just a daily record of what I eat and any symptoms I feel that can be allergic reactions. In this way it is easier to find out what is actually a trigger, because otherwise, I can feel symptoms and then I don't really know which one was the trigger.

Thanks for the update, Yas.

FWIW, when reading what you wrote, my eyes picked up a book my partner has on essential oils, so I looked in the index for HS. Although not directly found, hair follicles and boils came up. I checked on this thread for what was used with success, and it was not mentioned. So what it says in this book is to apply Lemon Oil (essential oil). It states that the next day it turned black and drained and then abated and disappeared.

It might be something to further research.

Iteresting. It will be good to search in HS forums and websites to see if someone has tried it. Thanks for looking it up!

 

[Laura]

You might want to look at the "Autoimmune Diseases Caused by Amoeba?" thread. HS IS an autoimmune disease, after all.

 

[Yas]

You might want to look at the "Autoimmune Diseases Caused by Amoeba?" thread. HS IS an autoimmune disease, after all.

Yes, I was reading it and fearing I might have to try that protocol... But I thought I'll do the same as you did: I'll do a good blood testing before to see exactly where I am right now. Thanks!

I also found out I had symptoms of autoimmunity since I was very young already :/

I hope you are feeling better now

 

[Keyhole]

I will start a thread on methylene blue over the next couple of days because it is truly miracle stuff, but just came across this study and felt it was pretty urgent to stick it up here for those suffering with this AI condition.

In short, intravenous Methylene Blue with red light (635nm) led to 6+month full remission in 5 out of 7 patients with HS. From what I know about methylene blue, it can probably also be used topically directly into the lesion, or orally (but may be less effective).

Abstract

Hidradenitis suppurativa is a chronic inflammatory skin disease which has an estimated prevalence of 1%. It is characterized by the formation of recurrent painful suppurative nodules and abscesses in the flexural areas of the body. It is believed that its pathogenesis involves an aberrant, genetically-determined activation of innate immunity against the bacterial commensal flora of intertriginous areas. It has been found that the formation of antibiotic-resistant bacterial biofilms is a common finding in hidradenitis lesions. Photodynamic therapy with different compounds and light sources has demonstrated its efficacy in a number of infectious diseases such as nail mycosis and chronic periodontitis. We retrospectively report our experience in the treatment of hidradenitis with photodynamic therapy using intralesional methylene blue and a 635 nm light-emitting diode lamp in 7 patients. Two patients received one session whereas 5 patients received two sessions. At one month follow-up good response was achieved in 6 patients. After 6 months, 5 patients (71%) maintained remission of the disease in the treated area. In view of the results and literature review, we regard methylene blue as an ideal photosensitizer for photodynamic therapy in this disease.

Link: http://pubs.rsc.org/en/Content/ArticleLanding/2016/PP/c6pp00082g#!divAbstract

 

[Gaby]

In short, intravenous Methylene Blue with red light (635nm) led to 6+month full remission in 5 out of 7 patients with HS. From what I know about methylene blue, it can probably also be used topically directly into the lesion, or orally (but may be less effective).

Fascinating!

The research was partly conducted in Huesca, not too far from where I'm located. I didn't knew they did this on the public system. A quote from the paper:

The photosensitizer used was intralesional methylene blue (MB) 1% solution, injected into the abscess with ultrasonography guidance until the lesion became dark blue. After an incubation period of 15 minutes, lesions were illuminated using a 635 nm red light-emitting diode (LED) lamp (Aktilite, Photocure ASA, Oslo, Norway and BF-Rhodo LED, Biofrontera Pharma GmbH, Leerkusen, Germany as they are the lamps available in our Departments) at 37 J/cm2 to each lesion (8 minutes of irradiation time in average). Two patients received only one session; all other patients underwent two PDT sessions with a separation of a 15-day period.

 

[Keyhole]

Fascinating!

Yep! I can't find much research on some of the biomarkers in HS, namely nitric oxide, serotonin, or lactate dehydrogenase. But the fact that Methylene Blue seems to have such amazing effects suggests to me that it is not only due to photosensitization, but may also be related to nitric oxide mitigation at the level of the mitochondria.

MB not only dissociates NO from cytochrome C oxidase (increasing oxidative phosphorylation and decreasing glycolysis - thereby increasing NAD+ to NADH ratio), but also inhibits Nitric Oxide Synthase. When the mitochondria starts working properly again, the symptoms dissappear. So its starting to look more like Hidradenitis Suppurativa is a bioenergetic disease, (probably) linked with systemic bioenergetic decline, and simply manifesting in whichever organ system is hit first - in this case the skin. Basically, mitochondrial dysfunction.... just like most other chronic diseases.

 

[LQB]

Keyhole - although this does not apply directly to HS, it would be interesting (to me at least) to get your take on this interview with Dr Richard Veech:

https://blog.bulletproof.com/exclusive-interview-with-ketone-expert-dr-richard-veech-299/

His background is very interesting with much work in energy metabolism. [Near the end, a vegan describes getting his BHB up to 7-8mm] If you have the time, it would be great to get your comments.