At A Loss Here... (A friend with Hidradenitis Suppurativa, or "HS")

[Mike]

Posted by Advancing HS Perception (here)
Hi Mike and all,

I have HS too. The following link may help your friend Mike.
http://www.hs-foundation.org/mental-emotional-health/

I should disclose that I am a co-founder of this above foundation, however I have not been formally involved with the org since the end of 2008.

On this next page your friend can watch a video from a new non profit focused on Hs support and advocacy, Hope for HS, in Detroit Michigan. The video was an eye-opener for me, and very beneficial for me from a mental health perspective.

http://www.hs-foundation.org/support/

HS is a difficult disease to come to terms with, difficult to live with. Medical studies confirm there is a high emotional toll taken by the disease. It is very painful. People with HS may have a higher risk for many things including anxiety, depression, and heart disease. There is a risk of completed suicide.

For over 20 years I have had many people, including the leading experts tell me what it is, and how it can be treated. I still have Hidradenitis Suppurativa. More research is needed.

Mike, it is a very difficult disease to talk about. My family do not even understand what I have gone through. People with HS may need professional mental health care, me included.

All my best,

Rob Howes
Melbourne Australia
robertjameshowes@gmail.com

Hi Rob

Hey thanks so much for posting here! It's very much appreciated.

The last suggestion I made to my friend went sideways. It was a little more than a suggestion - I actually sent him a bottle of a supplement called 'serrapeptase, which, on paper, looked like the perfect supplement for him because it's anti inflammatory and known for its unique ability to heal scars. Well he had a reaction to it with a nasty break out.

He doesn't trust my advice at the moment (and I don't blame him). Do you have any treatment suggestions? ...diet or supplement wise that you've had success with?

He has some success with a very strict diet, but he keeps lapsing on it. Tough situation. He really has to live like a monk.

[Mike]

Posted by RunningDeer (here)

Posted by Omni (here)
The current mental "health" system is largely about drugging an individual. I'm not sure what worked for you but I see it as a poisonous and toxic ideology in it's current state. Do you mean a therapist or self work? Because I mean psychiatry.

I was admitted for a three day suicide watch. It was a b s o l u t e l y, without a doubt necessary. I had weekly sessions with a therapist and took drugs. The most important part of my recovery was the self-work; part of that was to show my son you don’t quit.

The loss of my son is like no other. I say this as one that lived with all the colors of the rainbow across my body. I still have tender spots on my scalp some 53+ years later where I was picked up by my hair only to be slapped down again. When it was over, my job was to sweep up the hair off the floor.

I have an extremely high tolerance for all types of pain. Without a doubt, if it wasn’t for the timely suicide intervention, I would not have made it.

To those in pain: explore ALL options. Suicide is NOT one of them.

[RunningDeer]

Posted by Mike (here)

Thank you, Mike.
Everyone is resilient. Each needs to prove it for herself/himself and build upon the experiences.

Disclaimer: IMO



♡

[Foxie Loxie]

I always LOVE the "I am a work in progress" sign because it is SO true!!!

[Joe from the Carolinas]

Posted by RunningDeer (here)

Posted by Omni (here)
The current mental "health" system is largely about drugging an individual. I'm not sure what worked for you but I see it as a poisonous and toxic ideology in it's current state. Do you mean a therapist or self work? Because I mean psychiatry.

I was admitted for a three day suicide watch. It was a b s o l u t e l y, without a doubt necessary. I had weekly sessions with a therapist and took drugs. The most important part of my recovery was the self-work; part of that was to show my son you don’t quit.

The loss of my son is like no other. I say this as one that lived with all the colors of the rainbow across my body. I still have tender spots on my scalp some 53+ years later where I was picked up by my hair only to be slapped down again. When it was over, my job was to sweep up the hair off the floor.

I have an extremely high tolerance for all types of pain. Without a doubt, if it wasn’t for the timely suicide intervention, I would not have made it.

To those in pain: explore ALL options. Suicide is NOT one of them.

Well said RunningDeer - critical and extreme mood states require critical and extreme intervention, under the protections of the law, of course.

[Tomkoyote]

Posted by Mike (here)
The last suggestion I made to my friend went sideways. It was a little more than a suggestion - I actually sent him a bottle of a supplement called 'serrapeptase, which, on paper, looked like the perfect supplement for him because it's anti inflammatory and known for its unique ability to heal scars. Well he had a reaction to it with a nasty break out.

He doesn't trust my advice at the moment (and I don't blame him). Do you have any treatment suggestions? ...diet or supplement wise that you've had success with?

He has some success with a very strict diet, but he keeps lapsing on it. Tough situation. He really has to live like a monk.

Serrapeptase is an enzyme...

He can start with the following:
- Get 2 lb of Activated charcoal (preferably Food Grade, Amazon has it). Use it topically and internally.
Internally: 1 teasp 3x/day on empty stomach (1hr before meal, 2hr after meal). Put the powder in a glass, add water, stir, let it sit for 2/3 mnts, stir again and drink.
Topically: take AC bath - 1 cup in hot water. Sit in it at least for 30 mnts, longer is better. I know it's messy but worth it.
- Get 1 lb of Milk Thistle seeds. Don't buy the capsules of ground stuff (no potency left). Grind small amounts at a time enough for 4/5 days. Store in small glass jar in fridge. Take 1 teasp before each meals 3x/day

It is unlikely that he'll experience bad reaction. He should see some results in 8/10 days. If there is relief, post back and we'll move to the next step.

[Omni]

Posted by RunningDeer (here)

Posted by Omni (here)
The current mental "health" system is largely about drugging an individual. I'm not sure what worked for you but I see it as a poisonous and toxic ideology in it's current state. Do you mean a therapist or self work? Because I mean psychiatry.

I was admitted for a three day suicide watch. It was a b s o l u t e l y, without a doubt necessary. I had weekly sessions with a therapist and took drugs. The most important part of my recovery was the self-work; part of that was to show my son you don’t quit.

The loss of my son is like no other. I say this as one that lived with all the colors of the rainbow across my body. I still have tender spots on my scalp some 53+ years later where I was picked up by my hair only to be slapped down again. When it was over, my job was to sweep up the hair off the floor.

I have an extremely high tolerance for all types of pain. Without a doubt, if it wasn’t for the timely suicide intervention, I would not have made it.

To those in pain: explore ALL options. Suicide is NOT one of them.

This is why I said largely, it is like saying our tax dollars in America go towards good things, it isn't a full picture. Like standard corrupted models (e.g. the bible) there are valid mechanisms to rationalize it's necessity or goodness. For example I think suicide numbers are more prevalent with people who follow a psychiatrists advice (the drug route). I am not saying there is no validity in the entire system, anywhere in mental "health." You are missing the point......if people want to drug their minds into oblivion I said my piece. Mental health is a trap for relatively healthy people.

[RunningDeer]

Posted by Omni (here)
You are missing the point......

Omni, Omni, Omni…

Posted by Omni (here)

Posted by RunningDeer (here)

Posted by Omni (here)
The current mental "health" system is largely about drugging an individual. I'm not sure what worked for you but I see it as a poisonous and toxic ideology in it's current state. Do you mean a therapist or self work? Because I mean psychiatry.

I was admitted for a three day suicide watch. It was a b s o l u t e l y, without a doubt necessary. I had weekly sessions with a therapist and took drugs. The most important part of my recovery was the self-work; part of that was to show my son you don’t quit.

The loss of my son is like no other. I say this as one that lived with all the colors of the rainbow across my body. I still have tender spots on my scalp some 53+ years later where I was picked up by my hair only to be slapped down again. When it was over, my job was to sweep up the hair off the floor.

I have an extremely high tolerance for all types of pain. Without a doubt, if it wasn’t for the timely suicide intervention, I would not have made it.

To those in pain: explore ALL options. Suicide is NOT one of them.

This is why I said largely, it is like saying our tax dollars in America go towards good things, it isn't a full picture. Like standard corrupted models (e.g. the bible) there are valid mechanisms to rationalize it's necessity or goodness. For example I think suicide numbers are more prevalent with people who follow a psychiatrists advice (the drug route). I am not saying there is no validity in the entire system, anywhere in mental "health." You are missing the point......if people want to drug their minds into oblivion I said my piece. Mental health is a trap for relatively healthy people.

[Dennis Leahy]

Always remember, when dealing with people within the Western medical sphere, that the phrase "evidence-based medicine", logical sounding as it is, is a carefully-crafted filtering mechanism to ostracize alternative medicine. They only thing the medical establishment consider "evidence" are results from drug company studies. Just because some pharmaceutical company has not committed a couple of hundred million dollars to a study that ginger can calm an upset stomach, or that aloe vera can do near-miraculous healing to sunburn, or that any other tried-and-tested-true alternative can do what thousands of 'regular folks' have witnessed, doesn't mean they are not valid. But the medical establishment have accepted the "evidence-based medicine is the only valid medicine" gambit hook, line, and sinker.

You know where you were when JFK was murdered? I know where I was when I first heard the phrase "evidence-based medicine." I have mentally marked it because I quickly figured out that the intent was to invalidate everyone but pharmaceutical companies from modern, Western medicine.

Mike, have you StartPaged (we don't "google", do we?) this: Hidradenitis Suppurativa cannabinoid

If you do, you'll find this article I just found:
Declining Skin Surgery to Try Cannabis Oil

"...instantly relieved her pain. Within five months, all the HS related wounds had nearly disappeared, and Mandy also lost 50 pounds. She finally felt liberated and free. ...
...
...When I was suffering of large wounds I applied cannabis oil directly into the holes and watched it melt into the tunnel. A couple of weeks later and the tunnel had healed to the surface. Cannabis oil has given me my life back. I no longer dread waking up every morning. It is not agonizing to walk or wear clothes. I finally feel I am at peace with myself. Hidradenitis Suppurativa tried to take everything from me. Emotionally I did not know how to cope with my reality. Was I really destined to endure such invasive surgery all throughout my life? Should I really be consuming so many synthetic chemicals without ever truly finding relief? I had so many questions and so much pain. I got lost in the depths of my own self-pity and no longer felt worthy of anyone or anything. I have experienced something that must be shared with others. Cannabis can not only treat and heal cancer, seizures, M.S. etc. It can heal Hidradenitis Suppurativa. Now cannabis needs to be recognized so this medicine can be accessible to all sufferers. I feel I owe it to humanity to share my story and spread awareness.” – Mandy J."

-and-

Hidradenitis Suppurativa and Rick Simpson (CBD) Oil

"...I decided that giving CBD oil a try to see if it would help. Within 5 days my wound closed up and healed over!...
...
...I am not saying this is a cure all, or that it cures HS, but it helped me when nothing else has. I am amazed that CBD oil has done for me what no antibiotic, accutane, home remedies or other treatment has done. "

It sounds promising. Maybe it will give your friend some hope - real hope, not false hope. [[If he says, "yes!", then we need to talk about sourcing high-quality, fully extracted, CBD. ]]

[Mike]

Hi Dennis! Thanks for all that!

My friend with the HS is taking cbd. It's prevented a tragedy from becoming a hell. It's helped him quite a bit! I think youre spot on with everything you wrote, as usual.

I take cbd too. Twice a day. It really is a godsend

[Tomkoyote]

In my previous post I forgot an important detail: do not take AC with others products such as supplements, THC, CBD, etc.... Nothing bad will happen, just that AC will displace them.
Sorry for the omission.

[onawah]

Mike, your friend might find some encouragement and good advice from watching this series about cannabis : https://two.thesacredplant.com/docus...ff&oprid=46900

This Sacred Plant Prevents, Treats and Even Beats Cancer, Chronic Pain, Anxiety, Autoimmune Conditions, And Hundreds of Diseases

There seems to be a community building of people getting relief from CBD, etc. and perhaps it would help your friend's state of mind to become involved with that network, for emotional support. Great that he's taking CBD!

[Advancing HS Perception]

Hi Mike,

No suggestions for treatment. HS has been treated with a multitude of medicines, surgery, radiation, diet and alternative treatments & lifestyle modifications since first described in 1833. Hidradenitis Suppurativa is still around. I am hopeful though, always. All my best.

[Chris]

If you are interested in how Mike's friend's healing and recovery is progressing, I posted an update about it on my own thread:

https://projectavalon.net/forum4/show...=1#post1232473

[MrBlack420]

I wish you to find a solution. I think that you can start from here cannasos.com.

[happyuk]

Posted by Bubu (here)
Plus 1 on CBD and THC. I will add another wonder herb. goosegrass

I've been dispensing free tea and have witness the magic in almost all cases. I have once visited a friend who is suffering from high fever I made him a goose grass tea. While sipping he started perspiring and soon was dense and had to change clothes. Less than an hour fever is gone as if the goose grass kick out all the toxins, via perspiration, that is causing the fever. Goose grass is said to cleanse the blood and nerves. No wonder if toxins is the cause. also my number one immune booster, ganoderma mushroom.
To anyone who wants to try goose grass please read detox reactions I have witness or heard most of them from recipients. My conclusion after years of study and trials is that there is no single miracle cure. We need variety as in food. Well as I have mentioned many times our body works like a factory it produces all kinds of substance that the body needs CBD THC booldcells and all included therefore it needs raw materials, various raw materials. So that when I dispense I give a variety of veggies and known medicinal herbs. But in the modern toxic ages goose grass always comes first. Sheep sorrel and burdock roots and neem are also detox herbs.

+1 for mentioning neem leaves, a noted blood cleanser.

[CurEus]

I have a mild-ish form of HS. The only thing that helps is strictly controlling my diet no grains sugars, yeasts etc.
I have have had 3 surgeries to remove growths including on my tailbone.....VERY painful. I will often have a breakout in my inner thighs as large as a grapefruit that can make it impossible to walk. Stress is a factor.
Hopefully your friend finds some relief.

[CurEus]

I wonder if MMS would help???

[Tomkoyote]

Posted by CurEus (here)
I wonder if MMS would help???

Very likely, but not to be taken with other products like THC, CBD, antioxidants

[CurEus]

Although most cannabis products are legal as of Today I have never understood much about cannabinoids or how they are best employed for healing.

My general awareness about HS is that it is triggered for me by over consumption of grains, and processed foods and stress. As well as areas with skin contacting skin. I did have a lot of acne as a teen but that cleared up as my diet changed. I had a very severe skin condition develop from leaky gut and beer about a decade ago so am VERY careful with grains, legumes and nightshades. I literally had psoriasis, contact dermatitis, eczema....blisters, boils, acne. all develop over night.

If there is a gut connection.........I am staring right at glyphosates and a leaky gut connection. The TED video indicated that gentleman with this issue was also highly vaccine reactive.......I was as well.

Somehow they are related I expect. Dermatologists were useless......so were their ointments and creams.

My GP put me on an organic apple juice fast for a week, his reasoning is that the skin is also an organ that expels toxins so if the kidney and liver are over worked...........the skin will be used to eliminate things.
I think somehow toxins are being eliminated through the sebaceous glands and become clogged/inflamed similar to but not precisely the same way as cystic acne. This can be complicated with ingrown hairs, folliculitis, clogged pores.......there are literally 30 potential complicating/exacerbating factors.

They also tend to become "active" on something of a schedule....I am not able to ascertain if this is hormonal fluxes, cycles of hair growth..........or something else entirely.

I was informed that they diminish as we get older.

My management routine is
1. Diet NO SUGARS, NO GRAINS!!!
2. Keep meticulously clean......quality soap. alcohol, peroxide, colloidal silver,
3. I do not use scented or chemical laden soaps or fabric softeners for my underwear. I use a charcoal soap in that area.
4. I change twice a day 3 times if I work out or exercise
5. I gently exfoliate the areas
6. I keep the area DRY........some people use antiperspirant ( not deodorant) to some effect. Apply with a tool, if there is an infection it would obviously transfer to the deodorant stick
7. Bandage.......I use one that is much larger than the area to A. Prevent irritation B. larger ones means your taping/glue is not on the active area.
8. Warm compresses. I heat distilled water with peroxide.......sometimes it will motivate the area to clear if it presents
like a boil.
I will occasionally use tea tree oil, salycitic acid wash, colloidal silver, rubbing alcohol, peroxide.

I just bought Tumeric /Curcummin which some have mentioned is very helpfull in preventing flare ups but not for permanently "resolving" any active areas. A tumeric poultice may help.

I expect I will have the area ( about the size of a quarter) surgically removed in the winter.

All that I can add is that there seems to be a few "types" one is usually close to the surface and will eventually erupt and similarly to a cyst/boil/acne. The others are quite deep and they can take a few weeks to surface and clear. COuld be in agony for a few weeks......

I have used something called Pridd Drawing Salve which is "supposed" to draw an infection to the surface. I found it messy but some people find that it is very helpful. There are veterinary versions that are "stronger" Often used for horses with ulcers, boils, splinters. I think it is coal tar........

I would posit that if pores, glands, follicles are blocked........sauna and infrared therapies may be helpful. But again there are so many ways this presents medically it is difficult to say "this WILL work"

My next option is to look at Iodine...... PCOS which is a cyst forming condition in the ovaries and responds to iodine therapyy........ I dunno though.
Other option is laser hair therapy that kills the hair follicles.

Sometimes I want to chat with the drunk engineer who designed the human body.......seriously, you made some mistakes! Or maybe I should be chatting with the drunk vaccine scientist who probably knows better and chooses to be silent?