Verneuil's disease AKA Hydradenitis Suppurative

[Chu]

Where are you reading about the connection to Verneuil and hemochromatosis? I have been watching the hemochromatosis thread and did not make the connection.

Nowhere. What I meant is that both are somehow related to zinc absorption, not to each other. A protocol is used to cure some HS patients with zinc, as I said, and then, there are several articles showing there is a correlation between iron overload and zinc.
http://www.ncbi.nlm.nih.gov/pubmed/9801930
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC502110/

That's it. It's absolutely not clear to me yet. I'm just speculating that, therefore, both conditions might be related or share some mechanism/gene mutation. Just a possibility, but doctors (as usual) don't even seem to be asking these questions.

I am still using my cast iron pans and keep wanting to think this does not relate to me, but mabey I need to look into this more?

Well, I think it's worth a try. Apart from Atreides, there is another group member who has HS type symptoms, had his ferritin tested, and he is about as high as Atreides. So there might be a connexion or not. It would be good to know from more group members, to see if we can deduce something important.

On a side not the only thing that helped with the pain after surgery was a product that contained a lot of zinc called calmoseptine.

Aha! Yes, it seems to work for some.

 

[Chu]

A forumite here wrote this:

I received an email today from Ron Hoggan. Most of us know him as the co-author of "Dangerous Grains". He is also on the board for Hidradenitis Suppurativa. He gave me permission to post the following:

"I have long suspected that HS is another manifestation of gluten-induced skin lesion. At the very least, I suspect that gluten is a large contributor to HS. I also find its connection with iron metabolism most interesting. This is partly because gluten sensitivity and celiac disease are both associated with iron metabolism errors.

Maybe it would be worth contacting Ron Hoggan to see what else he knows about this?

And here, someone posted:

According to Prof. Revuz, the posology for zinc HS treatment should be total 90mg of zinc gluconate per day, in the form of 15mg pills taken throughout the day (6 times)- that's how the treatment was administered in the successful Nantes clinical trial.

By browsing the Linus Pauling Institute website, I found that extra zinc intake may influence iron absorption (and subsequent anemia) because of the interactions between zinc and copper. I then decided to also take a small supplement of copper every other day to be on the safe side. I hope this information helps."

So, if this is a clue, taking zinc might help lower your iron levels. Is it zinc that is helping with HS, or the fact that it prevents iron overload? We know "anemia" is not well understood, and that people can be anemic but actually have high ferritin levels. So, lowering iron by donating blood might help with HS without any risks? I don't know... But that's what I'm wondering, FWIW.

 

[Muxel]

This is partly because gluten sensitivity and celiac disease are both associated with iron metabolism errors.

Transferrin receptors (CD71) are overexpressed in both celiac disease and cancer (so iron-hungry cancer cells can take up more iron that way). In celiac, gliadin binds to Immunoglobulin A to form complexes. These complexes enter the gut wall (because transferrin receptors are overexpressed) and it is speculated that this causes the switch from tolerance to inflammation. (See http://www.nature.com/mi/journal/v2/n1/fig_tab/mi200875f4.html for the full thing.)

My thoughts: since transferrin receptors are being overexpressed, shouldn't increased iron uptake occur alongside IgA-gliadin uptake? (Or, do they compete with each other for the transferrin receptor?) Also, why are the transferrin receptors being overexpressed in the first place - for that to happen, musn't hepcidin be downregulated? And hepcidin is generally downregulated when (1) RBC production in bone marrow is upregulated, (2) in hypoxia, or (3) the body perceives a lack of iron.

So, if this is a clue, taking zinc might help lower your iron levels.

But what about this

Concentrations of certain non-ferrous divalent metals such as zinc and manganese are increased in the livers of patients with hemochromatosis; their transport into hepatocytes may be another consequence of transferrin or DMT1 pathways.

 

[cdwrites4]

Can anyone see my post? It's disappeared :(

 

[mkrnhr]

Hello cdwrites4, and welcome.
Did you click on "Post" when you wrote your post? In any case you can rewrite it if possible.
You can also introduce yourself in the http://cassiopaea.org/forum/index.php/board,39.0.html board :)

 

[cdwrites4]

Hi, I wrote a really long post (actually copied it so I could paste it somewhere in case it got lost) and then, hit post a few times and it's gone. I lost it in clipboard, too. Very frustrating. I am Claudia, age 44, mom to 2 young kids, and have had HS for 21 years since I was 23 years old. I have been eating a Paleo diet now for 4 years, quit smoking 13 years ago (that helped the HS a lot without me realizing it at the time). I started Paleo, quit grains and sugar, not to help the HS, but it definitely helped. I have been so much better, with occasional nodules but they were small and would go away fairly quickly. I knew that the diet was helping. UNTIL NOW, I have the worst flareup since I can't even remember when, probably more than 10 years. I have three at the same time right now, two are draining and open holes, they were HUGE like golf ball size and so painful and horrible looking. All of my HS is in the groin area, around the crease where underwear is, sometimes lower on buttocks.
Anyway, it led me to this forum to see help and it took me several days to read the whole thread. There was so much information, very interesting. But I also felt sadness for so much suffering with this HS. So sorry for everyone. I am getting the Elaine Morgan books. I do try to do grounding/earthing when I can. I am in the seawater every day in the summer here in NY. That's interestingn to me because I've always made a connection with HS and the colder months for me. I would not get flare ups in the summer soo could be all the swimming. Recently it is warming up here in the spring, but still colder, 50s, etc.

I am 0 positive blood type. My ferritin is high. I thought this just meant inflammation going on in the body. What's the possible connection, if any, to HS? Also, my iron is low (out of the range low). So I have been supplementing recently with chelated iron, 18mg, three times per week, to bring up the iron level. I am not anemic. But I have adrenal fatigue, a mild case, and bringingn up the iron is supposed to help.

I am also a little hypothyroid and taking t3 medicine for that.

Other than that, I avoid medicine and doctors. I haven't been to a dr. for my HS in probably 13 years. I used to go and they would lance and drain and leave awful scars. I had tons of antibiotics over the years, including Cipro and doxycline. I used Hibliclens and sulfur soap. I haven't taken antibiotics since then.

With the diet, I've managed on my own and just drain them myself. They do seem to drain and resolve much quicker and everything was ok until this recent flareup with three at once. I've never had three at once. I am frantic to figure out what I did to cause this, what triggered it. I had been letting more dairy get into my diet. Could that be it? I avoid all nightshades. I do use black pepper.

Any ideas?
I don't think surgery is an option for me with two kids to take care of and no family on either side to help out.

Thanks you for any other advice. This has been a very helpful thread.

 

[Laura]

Sounds like iron overload. Read "The Iron Elephant". You don't need more iron, you need B vitamins: B12, B6, B3, Folate. The thyroid problem can be related to iron overload. Since zinc helps HS and iron bogarts the Zinc binding sites, the healing of a leaky gut could have initiated a process of better nutrient absorption leading to too much iron and thus, kicking out the zinc, which aggravated the HS. You can see a doctor, get a prescription for phlebotomy, or you can check out oral chelating agents such as EDTA which pulls all heavy metals out of the body (a good thing!) though you have to do it in cycles where you chelate, then replace minerals, then chelate again. When you take minerals, you can take iron free versions.

 

[cdwrites4]

Thanks Laura. But why is my iron LOW if I have iron overload? I have high ferritin, not high iron. Not really sure about any of this, though.

I do cook daily with cast iron pots. I do have fillings with mercury in my mouth from childhood. I don't think I'm true hypothyroid but something else is going on.

Should I try supplementing with zinc gluconate? I'm afraid of throwing copper out of whack.

 

[cdwrites4]

You don't need more iron, you need B vitamins: B12, B6, B3, Folate

I also have MTHMR gene mutation c677T, homozygous. I've apparently been deficient in Bs all my life because of the mutation. So, since about January, I've been injecting methylcobalamin (B12) once per week. I also take all the B vitamins in a active form and try to eat some green leafy veggies every day. I think I'm slowly feeling better from all this. On my blood test, my B 12 shows up as super high out of range.

 

[cdwrites4]

Anyone else? I am feeling so desperate this past week. Today I tried the warm compresses again but the holes barely drained anything and it hurt worse when I applied the sulfur soap in a paste to the two that are now open. Since I haven't had any flareups like this I'm kind of out of touch with the illness and what to do. I am going to read the Elaine Morgan books but I haven't received them yet.

I am worried. I'm wondering if I've already progressed past stage 2 now.

What kind of zinc gluconate should I buy and should I start low with it and build up to the 90mg?

Thanks.

 

[Laura]

Thanks Laura. But why is my iron LOW if I have iron overload? I have high ferritin, not high iron. Not really sure about any of this, though.

I do cook daily with cast iron pots. I do have fillings with mercury in my mouth from childhood. I don't think I'm true hypothyroid but something else is going on.

Should I try supplementing with zinc gluconate? I'm afraid of throwing copper out of whack.

Your iron can be "loaded" in tissues and organs because the body is trying to store it as a defense mechanism. Reading the "Iron Elephant" can explain some things. Also "Exposing the Hidden Dangers of Iron."

If you have iron overload or heavy metal toxicity, taking more zinc may not help much though it can help some.

 

[Laura]

You don't need more iron, you need B vitamins: B12, B6, B3, Folate

I also have MTHMR gene mutation c677T, homozygous. I've apparently been deficient in Bs all my life because of the mutation. So, since about January, I've been injecting methylcobalamin (B12) once per week. I also take all the B vitamins in a active form and try to eat some green leafy veggies every day. I think I'm slowly feeling better from all this. On my blood test, my B 12 shows up as super high out of range.

It COULD be that iron overload is messing up your B absorption/balance.

 

[Laura]

Anyone else? I am feeling so desperate this past week. Today I tried the warm compresses again but the holes barely drained anything and it hurt worse when I applied the sulfur soap in a paste to the two that are now open. Since I haven't had any flareups like this I'm kind of out of touch with the illness and what to do. I am going to read the Elaine Morgan books but I haven't received them yet.

I am worried. I'm wondering if I've already progressed past stage 2 now.

What kind of zinc gluconate should I buy and should I start low with it and build up to the 90mg?

Thanks.

We use the lower dose ones: 50 mg broken in half and take half after a meal.

Have you spent much time in water? It seems that hot soaks in the tub are better than showers.

The Hemochromatosis thread gives a website to a company that has locations all over the US where you can get your blood tested without prescription for a reasonable cost. That would at least answer the question as to whether it is iron overload.

Since you have been recently supplementing with iron, and it is recently that this issue came up again, there may definitely be a connection.

 

[Pierre]

Thanks Laura. But why is my iron LOW if I have iron overload? I have high ferritin, not high iron.

Iron in blood (seric iron) only indicates the quantity of circulating iron. This figure can fluctuate a lot. For example it will drop if you've parasites, bacteria, tumors... because they are iron-hungry. That doesn't mean you don't suffer from iron overload.

While ferritin is a good indicator of iron overload, Serum transferrin saturation is an even better indicator since it is correlated to the amount of iron stored in your organs. Indeed, the main problem with iron overload is that the excess iron is stored in organs (liver, pancreas, heart,...) and eventually impairs them.

 

[cdwrites4]

Thank you everyone. The reason I have trouble with B vitamins is not because of iron issues, although that could contribute, but because of the gene mutation MTHMR c677t. I have methylation issues and I have to eat lots of leafy greens and supplement with active B vitamins because my body can't make them active. I have two copies of that gene and was tested just this January. I don't have problems getting blood tested and the dr. who I see is very thorough and will add on other tests if I want them. My insurance seems to be pretty good because so far they are paying for it. I pay a co-pay fee.

Here is my iron panel with ranges in parentheses: 46L (50-212 u/L); TIBC 315 (250-450 mcg/dL); UIBC 269 (155-300 mcg/dL); saturation % 15 (11-55%);
ferritin 113 (5-148 ng/mL); lipase 14 (11-82 U/L);
transferrin 213 (203-362 mg/dL)

I will explore the iron issue further but it's complicated because I am trying to heal adrenals, too, and that's why I am taking the low amount of iron just three times per week. I forget to take often.

What's the connection with Hydranitis Suppurativa and Iron?

Is the cast iron cooking a problem?

I purchased a zinc challenge product. It's a big bottle and you hold a few teaspoons in your mouth and depending on the taste you will know if you are zinc deficient or not. I think that could be handy for everyone supplementing with zinc gluconate.

I am just at the end of my rope with HS and I haven't tired zinc supplementation and I think that's a good one to try, certainly easier than surgery or antibiotics (which didn't reallly work anyway). I think the diet has helped much more than antibiotics ever did.

Today I am doing a little better, can walk around a bit better so I will try for a walk for mental health. I have two open and draining nodules. They are still red, open and hard. There's nothing coming out of them unless I squeeze and poke at them. Should I leave them alone now? I know there's more in there to come out because they are still a bit hard, painful, and raised. Usually when they are done draining, they are flat and there's no more pain.

When I applied the sulfur soap paste the pain was worse.