Verneuil's disease AKA Hydradenitis Suppurative

[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.

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.

I have not spent much time in water. Normally I do when the weather gets a little warmer here in New York, as it is starting to now. I don't do hot soaks in the tub very often and haven't at all lately because the tub is broken, doesn't drain. I'm trying to find someone to fix it. I think spending time in water would help me tremendously. It explains why I never get HS in the summer when I am at the beach and swimming every day for at least 30 minutes. This is from June through beg. of October. I'll go in even if it's cold water.

Now I see where you have made the connection with the supplementing with iron and the recent HS. I've backed off on the iron considerable this past week, maybe only took it one night. Forgot to take it. It's hard to remember it since it's three times per week and must be taken away from other supplements.

I've also been taking kelp and bladderwrack capsules recently to increase my iodine more naturally and help the hypothyroid issue. I was wondering of a connection with HS there, too.

 

[Gaby]

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.

Be careful! With that panel, you definitely don't need iron supplementation.

For a short version of the story, see this article:

Iron overload - the missed diagnosis

http://www.sott.net/article/260752-Iron-overload-the-missed-diagnosis

"The most common symptom of iron overload is weakness, lethargy and a fatigue that is disabling. As the iron builds up it disturbs other body processes and depletes certain minerals and vitamins such as zinc, and vitamin E and vitamin C."

If you have a methylation problem, you definitely don't want to have an excess of iron. It is really a bad combination.

You'll find more info in the books suggested and the "Iron toxicity" thread:

https://cassiopaea.org/forum/index.php/topic,20265.msg203157.html#msg203157

Iron supplementation with your panel and your genetic mutation is a deadly combination.

 

[cdwrites4]

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.

Be careful! With that panel, you definitely don't need iron supplementation.

For a short version of the story, see this article:

Iron overload - the missed diagnosis

http://www.sott.net/article/260752-Iron-overload-the-missed-diagnosis

"The most common symptom of iron overload is weakness, lethargy and a fatigue that is disabling. As the iron builds up it disturbs other body processes and depletes certain minerals and vitamins such as zinc, and vitamin E and vitamin C."

If you have a methylation problem, you definitely don't want to have an excess of iron. It is really a bad combination.

You'll find more info in the books suggested and the "Iron toxicity" thread:

https://cassiopaea.org/forum/index.php/topic,20265.msg203157.html#msg203157

Iron supplementation with your panel and your genetic mutation is a deadly combination.

OK, no more iron supplementation for me. I'll have to heal adrenals another way. However, from a little reading on these links, I don't think iron overload is my problem. My ferritin is not that high and my saturation % is 15. Those who had iron overload were much higher. I did just get tested again after having done the supplementation for a few months. I only started it in January. I will see where my numbers are, too.

I'm wondering if when they do a blood draw at the doctor's office and they fill so many vials of blood, like 20, does that qualify like a blood donation, getting rid of iron also?

Also, I have a regular menstrual cycle, every 28 days, so that would help with this issue, too. I'm thinking it's good that I know about this now but I don't think it's something I currently have going on. I'll keep reading.

Thanks for the advice. I'm still suffering with the HS and the two nodules. I did some more compresses tonight and nothing drained out but one is still opened. THe other seems to have formed a skin over the hole and despite some squeezing and poking, didn't drain anymore. This is unlike past experiences where I have been able to resolve and drain fairly quickly within a few days. This has now been going on for 2 weeks.

I did more grounding today, walked barefoot in the sand and water at the beach for about 20 minutes, that's all the time I had to spare.

 

[cdwrites4]

My husband and I did the zinc challenge.

I came up deficient, low zinc. (no taste)

He came up with adequate zinc (strong metallic taste)

I thought this was very interesting.

Claud

 

[Pierre]

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)

After reading "The Iron Elephant", If I had those numbers I would go to a blood bank a few times to drop my ferritin level around 10 (each 480 ml donation reduces ferritin by roughly 30 points) while making hemoglobin and hematocrites don't drop too much (10 and 30 respectively) and I would stop any kind of iron supplementation.

 

[cdwrites4]

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)

After reading "The Iron Elephant", If I had those numbers I would go to a blood bank a few times to drop my ferritin level around 10 (each 480 ml donation reduces ferritin by roughly 30 points) while making hemoglobin and hematocrites don't drop too much (10 and 30 respectively) and I would stop any kind of iron supplementation.

Thank you so much. What about my recent labs that were done at the doctor? They took a lot of blood, 20 or more tubes of it. Would that suffice as a "donation" that would reduce ferritin?
I have stopped all iron supplementation. I haven't read the book but will try to get it at the library. They are asking $180.00 for it on Amazon.

 

[Lindenlea]

Hi cdwrites4

Just in case you haven't been able to get The Iron Elephant from the library, the following link was posted by Alana in April for a much cheaper version of the book.

http://www.bookch.com/6371.htm

Hope this helps :)

 

[cdwrites4]

I donated blood yesterday. I told them about my "low" iron and they test everyone who is donating because if you're low you can't donate. So, they told me my hematocrit was 46 and not low at all. "You have the level of a man," she said to me.

I hope donating helped. Is that a high level?

Claudia

 

[Gaby]

I hope donating helped. Is that a high level?

Claudia

Yes, that was a high level. See if you can check your iron storage levels (i.e. ferritin). See the hemochromatosis thread for more info. I'm sure it was helpful to donate :)

 

[Kelly79]

I just stumbled onto this forum while researching HS. I've been suffering with the condition for 16 years, although thankfully I'm still a late Stage I/Early Stage II. Antibiotics haven't worked for me, but I've found that warm compresses relieve the inflammation and pain. I've also stumbled upon a somewhat helpful, slightly preventative application---Gold Bond powder. It contains zinc, and also doubles as a cooling, moisture-reducing, antiperspirant. However, a few words of caution; do not apply to open nodules. Additionally, if your HS is near your groin, try to apply the powder sparingly (a Q-tip helps) to avoid getting it IN your groin (it burns, take my word for it). Used correctly, it seems to extend my periods of "remission". Also, try very hard not to squeeze or poke the nodules, as this can spread the bacterial matter, resulting in the formation of channels under the skin. I've found that applying a VERY hot compress to the area and then making a puncture with a small needle works much better. The heat serves to loosen the matter inside and allows the fluid to drain naturally; it's slightly more time-consuming, but the end result is less irritation and inflammation, and may help reduce the formation of channels.

 

[Chu]

Just found this paper, in case anybody is interested:

Hidradenitis suppurativa. Glucose tolerance, clinical, microbiologic, and immunologic features and HLA frequencies in 27 patients.

O'Loughlin S, Woods R, Kirke PN, Shanahan F, Byrne A, Drury MI.
Source

Department of Dermatology, Mater Misericordiae Hospital, Dublin, Ireland.
Abstract

Glucose tolerance, lymphocyte populations, and HLA types were studied in 27 patients with untreated hidradenitis suppurativa; 18 of these patients had a negative history for acne vulgaris. Six patients (22%) had an increased incidence of impaired glucose tolerance. We failed to confirm a previous report of high incidence of flat glucose tolerance curves. The frequency of HLA-A and HLA-B antigen loci and the median values of peripheral blood T lymphocytes were similar to the control population. However, seven patients with moderate or severe clinical disease had a marked reduction in T lymphocytes and these patients had an increased frequency of the HLA antigens, A1 and B8. These results suggest that T lymphocytes may play a role in the pathogenesis of hidradenitis suppurativa and that HLA-A1 and HLA-B8 may predispose the patient to more severe disease, but further research is necessary to clarify this.

I couldn't download the entire paper, and it's quite a complex jargon they use there, but what my "internal medical dictionary for Dummies" says is: If you have HS, you are probably carb sensitive!!

 

[Laura]

Just found this paper, in case anybody is interested:

Hidradenitis suppurativa. Glucose tolerance, clinical, microbiologic, and immunologic features and HLA frequencies in 27 patients.

O'Loughlin S, Woods R, Kirke PN, Shanahan F, Byrne A, Drury MI.
Source

Department of Dermatology, Mater Misericordiae Hospital, Dublin, Ireland.
Abstract

Glucose tolerance, lymphocyte populations, and HLA types were studied in 27 patients with untreated hidradenitis suppurativa; 18 of these patients had a negative history for acne vulgaris. Six patients (22%) had an increased incidence of impaired glucose tolerance. We failed to confirm a previous report of high incidence of flat glucose tolerance curves. The frequency of HLA-A and HLA-B antigen loci and the median values of peripheral blood T lymphocytes were similar to the control population. However, seven patients with moderate or severe clinical disease had a marked reduction in T lymphocytes and these patients had an increased frequency of the HLA antigens, A1 and B8. These results suggest that T lymphocytes may play a role in the pathogenesis of hidradenitis suppurativa and that HLA-A1 and HLA-B8 may predispose the patient to more severe disease, but further research is necessary to clarify this.

I couldn't download the entire paper, and it's quite a complex jargon they use there, but what my "internal medical dictionary for Dummies" says is: If you have HS, you are probably carb sensitive!!

Which then means that if you have HS, you should severely limit carbohydrate consumption.

Seems like the Paleo/keto diets are showing themselves to be optimal for a LOT of conditions.

 

[Chu]

And there is also this interesting paper (It's hard to find much about HS, so any time there's anything, it's worth grabbing!)

Acne vulgaris and hidradenitis suppurativa as presenting features of acromegaly.

Here's the PDF for download:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1549472/pdf/bmjcred00578-0030b.pdf

Here's a definition of acromegaly:
http://en.wikipedia.org/wiki/Acromegalic

And on the paper above, it says that although it is rarely mentioned, quite a few patients with acromelagy have greasy skin, severe cases of acne, and a high rate of secretion of sebum.

 

[Yas]

Hello!

I'm so glad I've found this thread, and somehow sad to know that there's not other 'solution' than surgery for this condition.

From what I read so far, I also have it.

I started having cysts in the groin region last year. I associated them with cycling first and then with diet. I went to a doctor in one occasion at that first time when I had multiple acne-like lessions in the region. He told me they where only lessions due to friction with clothes and probably cycling as I mentioned, so I treated it locally with calendula cream and turmeric and the 'boil' disappeared only to appear and disappear again periodically - generally it got inflamed with my period and then disappeared as I put the cream and turmeric, also when I did a lot of cycling. It never drained until one time when I had cysts in both sides of the groin area, they got inflamed and suddenly opened up and drained by themselves. At this moment I thought that I had a hair conduct that was inflammed for some reason and that I should see what it was. Once again, the doctor just said it was a minor lession and that it should be OK.

I started noticing that it was related to my diet. So I got very very strict in my diet, strict with any sort of carbs and also some things as pepper and other spices. I noticed a lot of improvement with this, since I stopped having inflammation for a long time, although I sometimes felt the cyst when I cycled, it wouldn't get painful or it didn't really bothered me. So I let this thing pass... :/

Recently I had a flare up in one side of the groin area and it coincides with a less strict diet, a long cycling day and my period. The inflammation was huge and very painful. Searching on the internet I found about the bartholin gland and that many women get recurrent inflammation of it so I thought this could be my case as well. I went to the hospital that night because the pain was awful and the doctor that saw me thought it was the bartholin gland as well, but it couldn't be drained so I had to see another doctor the day after. She gave me an intravenous painkiller and I could sleep that night.

I went to the doctor the next day and I also reported the situation to Psyche, asking for advice. She has been really helpful, though I didn't tell her that it was a recurrent issue.

The doctor said it wasn't the bartholin gland and that it was a lession that got inflammed. He prescribed antibiotics and a topical gel that was supposed to help with the pain. I couldn't walk properly at this point.

I continued applying magnesium chloride and hot water in the region. It alleviated the pain but not for long, and the inflammation seem to be getting bigger, though one little black spot appeared meaning that it could be drained now. That evening, after starting the antibiotics the pain was so extreme that I was taken to the hospital again. A female doctor attended me and she was very impressed by the inflammation. She proceded to drain the pus after telling me that it was useless to put any anesthesia, so you can imagine how painful this process was. But I certainly felt alleviated after the drainage. Then she injected an antibiotic and a painkiller and prescribed more painkillers and antibiotics.

The next day I felt better, with a headache probably due to the drugs in my system. I called my doctor and he told me to take only one antibiotic (Cefixima 400mg) once a day for 7 days and no painkillers unless I had pain, which I didn't have since the drainage. For the next four days I felt OK, I had diarrhea due to the antibiotic, I took probiotics and it calmed down. But on Thursday I had to travel 6 hours for work and I started a fever on the way which went really high and, once again, I had to go to the hospital where they gave me intravenous dipirona to lower the fever and did some blood tests. The next day I still had fever but it remained low and the diarrhea was horrible. I came back home and slept the hole day.

Yesterday I went to my doctor, but I was feeling much better, with no fever. He told me this was due to antibiotics, that I didn't have an infection according to the tests and that I had to restore my gut flora ASAP, and drink A LOT of water. So I'm taking several types of probiotics now and drinking lots of water. I'm feeling allright now. I have some weakness and feel tired with the least effort but the diarrhea is getting better.

The thing is that another cyst appeared in the other side now. It's small and it doesn't hurt, but it made me search for some answers since I couldn't stay with the ones the doctors gave me so far. This is how I found this thread and I went through it all now. According to what I read, surgery and the hyperbaric chamber are the key elements to this condition. Unfortunately, I don't think I'll be able to find something like it here in my country. I'll research some more about what are my possibilities and maybe collect some of the information from here into a document and print it so I can take it to the doctors and see if I can find some sort of specialist who can give me some advice according to the available options for me. And also make sure that it isn't something else. But from what I read it seems to me that HS is the diagnosis. My mother also has problems with acne and the dermatologist told her that it's due to an overproduction of sebum from the sebaceous glands, so it makes sense that I also have this, even though I never had terrible acne problems.

For the moment, I realized that it has a lot to do with the diet, as I mentioned before... when I eat something that my body doesn't like it manifests pretty fast in my skin in the form of small acne and the inflammation of this cysts, so I'll be more strict again with the diet while I find other options to treat this condition over here.

I was frustrated because I got so sick even though I eat very well and my health in general is very good, but I guess it happened for me to pay attention to it now, while things aren't so ugly, instead of leaving it for later, as I tend to do with my own health problems.

I'm sorry if I got too much into details, but I wanted to share this experience feeling relieved because here there are people who understand the issue and the pain it can provoke. I also want to thank you all once again for putting the information available and, as you know, this can be of great help to a lot of people who suffer this condition quietly and get confused by doctors who don't have a clue.

 

[Chu]

I'm so sorry to hear this, AcidYazz! It sounds like you've just had a horrible experience! And if HS is what it is, the fact that after one cyst got drained and the other emerged so soon very likely means that you have a fistula, already. That is very common with recurrent cysts that you've had for a long time, such as you described. If at all possible, you should find a surgeon who can take care of this asap, I think.

You could print out the articles we have here, and Atreides' experience, and show them to the doctors (some of them really mean well and do similar surgeries, but they don't know about HS). If it can help, we can ask Dr. Guillem to speak to your doctor. He is so nice and caring that he would agree, I think. I can also ask if he knows anybody in South America. He attended an international conference about HS, so we might get lucky.

Atreides hasn't had any recurrence for more than 1 year now (touching wood...). So, the surgery really saved him.

But if for now it is not an option, then I strongly recommend that you have some Osmogel at hand, and put some on the minute you feel a small cyst forming. It is a gel made with Lydocaine and Magnesium sulfate. So it also stops the pain. That should keep them small and prevent them from forming too many fistulas in other places. If you can't get it in Paraguay, we can send you some.

Do you have follicles that look like a double black head, like the one you see in the picture I posted here? If so, then it most likely is HS. And you can scrub them hard in areas where there are not cysts, and even squeeze them and remove the black keratine, then keep the area very clean. And don't wear tight clothes. That also has been helping keeping everything at bay.

Take care!!!!