Hemochromatosis and Autoimmune Conditions

[Serendipity]

My thinking is that maybe the iron overload left you susceptible to a parasitic infection. From the way you describe it, it could be scabies too. I would have it checked since it is been months with this. Had you tried neem oil, coconut oil or anything?

I've been to a dermatologist and she said she found no sign of parasitic infection. She also did test for dust mites (Acarina) on my account, because I was worried it might be the cause, because some of the marks look whitish in appearance and I connected that with dust mites in my head, because I remember them being white when we had them as children. Parasitic infection was my first thought as well, but since then I realized that rash/bumps appear suddenly and sometimes even disappear as suddenly. I can even witness them appearing with my own eyes, if I look on my arm for few minutes for example. Another hint that it might not be a parasitic infection is that no other family member hasn't complained about any skin problems during whole of that time.

Dermatologist gave me some kind of cream/moisturizer that had bad chemicals inside so I didn't use it more then once, but instead I have been using Aloe Vera skin gel. Haven't tried coconut oil, but I will, and haven't even heard about neem oil. I also guess I'll get back in touch with my dermatologist, and probably get more testings prescribed. Yay :P

 

[Serendipity]

On the idea that there is something in the blood that your body is trying to remove - I think I would try ALA + NAC (ALA = alpha lipoic acid, NAC = N-Acetyl cysteine) 2-3X per day and see if that does anything. I might also try some external coconut oil on the rash sites.

Thanks for suggestion LQB, I have ALA at home, hadn't used it much in the past, but I'll start now and see if it helps. I'll get that coconut oil, and try not to eat it instead. ;)

 

[Gaby]

But, you're right, I should save my energy and look for second opinion, and that means trying my luck with private clinic, since there's pretty much nothing that I can do anymore with doctors that my health insurance covers, except do the tests, which I will because you never know what else might be going on. And wait...

Yeah, at least do the tests ordered to have more data.

Neem oil is pretty good stuff. If you do a search function here in the forum, you'll find how some members used it for some conditions.

Step by step

 

[Serendipity]

Yeah, at least do the tests ordered to have more data.

Neem oil is pretty good stuff. If you do a search function here in the forum, you'll find how some members used it for some conditions.

I will.

Step by step

Thank you :)

 

[Serendipity]

My thinking is that maybe the iron overload left you susceptible to a parasitic infection. From the way you describe it, it could be scabies too. I would have it checked since it is been months with this. Had you tried neem oil, coconut oil or anything?

Seems you've been right on the mark with your evaluation. I've did some investigation of my own, searches the net, checked other people symptoms, etc. and concluded with high probability that scabies infection is indeed what I have, just as I suspected from the very beginning, and then started taking steps to deal with it, until no less than 2 doctors said otherwise, which only sidetracked my thinking and doing, and left the disease untreated for so long. First my family doctor said that she saw no signs of scabies and then sent me away to dermatologist who examined me a bit more thoroughly and even conducted the so called "Acarus test" and didn't find anything. I bet they did it wrong. A personal note: Don't trust doctors again (not including Gaby). :P

Instead of that benzyl benzoate stuff, I will continue applying coconut oil and tomorrow will get some neem oil. Do you have any other suggestions? You really know your profession well, since it seems you've made the correct diagnosis just by reading the account of my symptoms, while the specialist who saw, examined and even did the tests, seems to have failed to make the correct diagnosis.

 

[monotonic]

I got scabies every time I walked into a forest near the house. It was terrible. There should have been no way for me to get it, but I did, and all the symptoms match.

The doctor gave me a prescription for a Permethrin cream, which worked even after I was squeezing drops out of the bottle the 3rd time I had the infection. BUT, we didn't have money to get more. A friend I have who lives where it's common says that everyone has a cheap bottle of flea/tick shampoo for dogs in their bathroom, and it doesn't get used for just dogs. It's not perfect at all, but it may be preferable to scratching your legs into bloody stumps and nearly fainting in the shower from the pain. Scratching does get rid of them, and at the time it was the only option I could think of. It spreads so quickly, you really do NOT want to waste a lot of time trying out different solutions before finding something that works.

While I was going through that ordeal, I did make a very helpful discovery though. If you turn the hot water on so it's scalding and reduce it to a trickle, and let it run down the rash, it will "cook" it and the itching will go away for several hours. It's the most effective way I know of to soothe the itch.

 

[Gaby]

Yeah, permethrin works like a charm. There is neem oil as well, but the standard prescription usually treats it effectively.

 

[Serendipity]

I got scabies every time I walked into a forest near the house. It was terrible. There should have been no way for me to get it, but I did, and all the symptoms match.

The doctor gave me a prescription for a Permethrin cream, which worked even after I was squeezing drops out of the bottle the 3rd time I had the infection. BUT, we didn't have money to get more. A friend I have who lives where it's common says that everyone has a cheap bottle of flea/tick shampoo for dogs in their bathroom, and it doesn't get used for just dogs. It's not perfect at all, but it may be preferable to scratching your legs into bloody stumps and nearly fainting in the shower from the pain. Scratching does get rid of them, and at the time it was the only option I could think of. It spreads so quickly, you really do NOT want to waste a lot of time trying out different solutions before finding something that works.

While I was going through that ordeal, I did make a very helpful discovery though. If you turn the hot water on so it's scalding and reduce it to a trickle, and let it run down the rash, it will "cook" it and the itching will go away for several hours. It's the most effective way I know of to soothe the itch.

Thankfully, my case isn't that severe. It's not itching too much, and it's not even very visible. Maybe that's part of why doctors didn't figured it out. It's only that it lasts so long, but at least now I can take steps to take care of it.

Yeah, permethrin works like a charm. There is neem oil as well, but the standard prescription usually treats it effectively.

Should I keep using coconut oil when I start using permethrin and neem oil?

 

[Laura]

Are you sure that scabies is what you have?

Scabies is contagious and can be spread by scratching an infected area, thereby picking up the mites under the fingernails, or through physical contact with a scabies-infected person for a prolonged period of time. Scabies is usually transmitted by direct skin-to-skin contact. It can also be spread through contact with other objects, such as clothing, bedding, furniture, or surfaces with which a person infected with scabies might have come in contact.[16] Scabies mites can survive without a human host for 24 to 36 hours.

 

[Serendipity]

Are you sure that scabies is what you have?

Scabies is contagious and can be spread by scratching an infected area, thereby picking up the mites under the fingernails, or through physical contact with a scabies-infected person for a prolonged period of time. Scabies is usually transmitted by direct skin-to-skin contact. It can also be spread through contact with other objects, such as clothing, bedding, furniture, or surfaces with which a person infected with scabies might have come in contact.[16] Scabies mites can survive without a human host for 24 to 36 hours.

Well, to be honest I'm not, but from what I've found on the internet (articles, symptoms, pictures of burrow marks, etc.) I give it a high probability that it's some kind of mite infestation. Also, I assumed that scabies are same as dust mites, because many articles describe the same symptoms only using different names: dust mites and scabies. Was I wrong with this assumptions? Perhaps it's indeed some type of dust mite, I heard and even doctor told me that there is thousands if not milions of them in each household (in bedding, mattresses, furniture), but generally don't cause an infestation, but can only cause allergic reaction to some, or something like that.

The thing is, my 'burrow marks', if that's what they are fit the descriptions/pictures I found while searching the net for 'scabies', they often appear in the line, etc. The rash would also increase during the night, and when showering with hot water. But, I really don't know for sure, and that's the words I'll have to use until I see a dermatologist again and hopefully know for sure. It could be just dust mites (they are different than scabies right?) infestation plus allergic reaction due to weakened immune system, which is supported by two facts: my family members haven't been infected plus I've not been feeling best last ~ 4 months or more, got sick few times, coughing even when not sick, tiredness, etc.

 

[Chu]

Well, from the symptoms you described first, and your tiredness, etc. my first thought was that:

a) you could be mineral deficient (are you taking enough salt and potassium?)
b) you may not be having enough fat and too much protein (+ the sweet potatoes)
c) the skin reaction could be a reaction to carbs. Some people are SO sensitive to carbs that they get rashes similar to the ones you are describing, just from eating a tiny bit. They come and go, they are a bit itchy, etc.
d) iron overload can also be connected to rashes and skin reactions.

And the above may explain why doctors haven't been able to tell you what it is. They don't know about these things!

FWIW, and I hope you find the answer and the solution very soon.

 

[Serendipity]

Well, from the symptoms you described first, and your tiredness, etc. my first thought was that:

a) you could be mineral deficient (are you taking enough salt and potassium?)

Plenty enough.

b) you may not be having enough fat and too much protein (+ the sweet potatoes)

I have less than 1g of protein per kg of body weight, and 30- max 50 grams of carb a day, mostly from a small portion of sweet potatoes, which I first started eating about a month after the itch first started. Also, I'm eating at least 200g of fat a day (if anything I might be eating too much of it). And, btw the fat bomb's awsome, thanks for the recipe.

c) the skin reaction could be a reaction to carbs. Some people are SO sensitive to carbs that they get rashes similar to the ones you are describing, just from eating a tiny bit. They come and go, they are a bit itchy, etc.

Could be, but than again, there were times when I didn't eat sweet potatoes for days in a row, meaning less than 10g of carbs per day. Worth checking though.

d) iron overload can also be connected to rashes and skin reactions.

That's one possibility.

And the above may explain why doctors haven't been able to tell you what it is. They don't know about these things!

Can't argue with that.

FWIW, and I hope you find the answer and the solution very soon.

Thank you for your thoughts, Chu :)

 

[truth seeker]

The thing is, my 'burrow marks', if that's what they are fit the descriptions/pictures I found while searching the net for 'scabies', they often appear in the line, etc. The rash would also increase during the night, and when showering with hot water. But, I really don't know for sure, and that's the words I'll have to use until I see a dermatologist again and hopefully know for sure. It could be just dust mites (they are different than scabies right?) infestation plus allergic reaction due to weakened immune system, which is supported by two facts: my family members haven't been infected plus I've not been feeling best last ~ 4 months or more, got sick few times, coughing even when not sick, tiredness, etc.

A couple of thoughts:

Since it gets worse at night, I'm wondering if you might be having an allergic reaction to your sheets or more specifically the soap or even fabric softener you wash them with. Perhaps you have increased sensitivity due to having a cleaner diet. This may also be the reason that other family members aren't experiencing the same thing.

Also, did you mean that the rash appears in a line on the skin? The reason I ask is because years ago I experienced a rash that also formed in a straight line. A paramedic I knew at the time mentioned that it could be related to a neurological reaction. Not sure how accurate this is or if it's relevant, but just thought I'd mention it.

Last, not sure if this might help, but I looked up mono and rash in the You Can Heal Your Life book by Louise Hay. It says:

Mono: Anger at not receiving love and appreciation. No longer caring for the self.

Rash: Irritation over delays.

I'm sorry you're not feeling well and hope you find some answers and get better soon.

 

[Serendipity]

A couple of thoughts:

Since it gets worse at night, I'm wondering if you might be having an allergic reaction to your sheets or more specifically the soap or even fabric softener you wash them with. Perhaps you have increased sensitivity due to having a cleaner diet. This may also be the reason that other family members aren't experiencing the same thing.

That's a good thought and I had the similar thought back when I first noticed white stains on my clothes. I've mentioned it to dermatologist and she said that it's a possibility. But, when I mentioned it's only on the inner side of my clothes and is probably just dead skin cells that stay in my clothes when I scratched, she agreed and a bit later added that I probably have a case of dry skin, or something like that, which I'm not sure I have, at least not at the moment.

Also, did you mean that the rash appears in a line on the skin? The reason I ask is because years ago I experienced a rash that also formed in a straight line. A paramedic I knew at the time mentioned that it could be related to a neurological reaction. Not sure how accurate this is or if it's relevant, but just thought I'd mention it.

In some places it shows up in pattern, like two marks next to each other, and few cases of three in a line (that's one of the reasons I thought the scabies or bed bugs might be the case, because it fits the description. well who knows), but mostly it's just random and appears mostly on legs and arms, but there's as well the rash on stomach and chest that looks a bit different and smaller than on arms and legs. Then, there are also what looks like small round red stains that I noticed on few places that remind me of allergic reaction I used to have when drinking juices with artificial colours years ago, only instead of full outbreak on arm or chest like before, now they appear randomly. I really must ask dermatologist to perform more thourough examination than last time.

Don't know what to say about the neurological reaction, but I did began to feel a slight headache recently, mostly in the front of my head. One of the 'abilities' I got after being on keto diet for more than a year is sensitivity to the inner workings of my body/organism, and I believe that many people here share it. Measuring instrument became more sensitive and I can more easily notice when something doesn't agree with my body. For example, before I would never notice the smell of teflon when someone is cooking on it, nowdays I must exit outside or I get sick. Same goes for the food that I'm sensitive to, I notice and have a reaction immediately. Well, this headache is there and I can notice it even 'louder' when I'm going to sleep. Now and then, and I can notice it upfront and try to 'control' it, if that makes sense, the pain increases and sharpens a bit. But, this could be connected to my scoliosis and the consequent effect and pressure on my neck and head bones.

Last, not sure if this might help, but I looked up mono and rash in the You Can Heal Your Life book by Louise Hay. It says:

Mono: Anger at not receiving love and appreciation. No longer caring for the self.

Rash: Irritation over delays.

I'm not sure why you looked up mono. Is it because I had mononucleosis, or some other reason that I missed? I'm not ruling out the mind/emotions body connection, but if I'm to be completely open I do notice some difference in myself during the last months, mostly that I'm less inhibited, more outspoken, less concerned of myself, and I thought that to be all good things, but maybe I'm missing something. Here's an idea: to make an appointment for a SRT with Patrick and Heather, that can't hurt right? I'm also waiting for Gabor Maté's 'When the Body says No' to arrive.

I'm sorry you're not feeling well and hope you find some answers and get better soon.

Thanks for the concern and your post, it made me think. I'm sure I'll be all right, I'm not feeling too bad, and it's certainly nothing compared to the average suffering of human beings on the planet, so I'll manage. I just have to take the proper steps. I'm also hoping and will take action to be appointed with the previous hematologist. I have a feeling she might prescribe the bloodletting if I ask her to do so when I bring the results of the other tests and they turn out to be OK. I have faith she will understand, when I explain that it can't hurt and since my ferritin is quite high, it's worth to try and see if I'll start feeling better after a few bloodletting sessions. She was a lot nicer and seemed more open minded than the other one.

I also remember what my father said when I talked to him about my blood test, ferritin level and the need for bloodletting to lower it. He said that when he gave his blood when he was in army, which was maybe 20 years ago, he immediately started feeling a lot better afterwards. He is constantly complaining to have lack of energy and feeling drained, but he is ascribing that to his mental and 'religious burdens'. He is also taking fairly large amount of medication for his PTSD, so it might be due to medication, but it is possible that he has an iron overload going on, which causes the lack of energy, clouded mind, etc, that he thinks is psychological in origin. So, step by step forward!

I hope there's some value in this post of mine, since it's long and mostly me talking about myself, bla bla. have to look into it as well, the need to talk to much. :/ Please say if I overdid it.

 

[truth seeker]

That's a good thought and I had the similar thought back when I first noticed white stains on my clothes. I've mentioned it to dermatologist and she said that it's a possibility. But, when I mentioned it's only on the inner side of my clothes and is probably just dead skin cells that stay in my clothes when I scratched, she agreed and a bit later added that I probably have a case of dry skin, or something like that, which I'm not sure I have, at least not at the moment.

Thanks for your reply and clarification. I was also thinking about eczema for some reason when you were describing the rash. If it's not too much trouble, can you post a picture of it? Apologies if you have and I've missed it.

In some places it shows up in pattern, like two marks next to each other, and few cases of three in a line (that's one of the reasons I thought the scabies or bed bugs might be the case, because it fits the description. well who knows), but mostly it's just random and appears mostly on legs and arms, but there's as well the rash on stomach and chest that looks a bit different and smaller than on arms and legs. Then, there are also what looks like small round red stains that I noticed on few places that remind me of allergic reaction I used to have when drinking juices with artificial colours years ago, only instead of full outbreak on arm or chest like before, now they appear randomly. I really must ask dermatologist to perform more thourough examination than last time.

Don't know what to say about the neurological reaction, but I did began to feel a slight headache recently, mostly in the front of my head. One of the 'abilities' I got after being on keto diet for more than a year is sensitivity to the inner workings of my body/organism, and I believe that many people here share it. Measuring instrument became more sensitive and I can more easily notice when something doesn't agree with my body. For example, before I would never notice the smell of teflon when someone is cooking on it, nowdays I must exit outside or I get sick. Same goes for the food that I'm sensitive to, I notice and have a reaction immediately. Well, this headache is there and I can notice it even 'louder' when I'm going to sleep. Now and then, and I can notice it upfront and try to 'control' it, if that makes sense, the pain increases and sharpens a bit. But, this could be connected to my scoliosis and the consequent effect and pressure on my neck and head bones.

Understood. Those are very sensitive reactions. Perhaps your body is still purging residual inflammation and is continuing the process of healing (regarding the rash).

I'm not sure why you looked up mono. Is it because I had mononucleosis, or some other reason that I missed? I'm not ruling out the mind/emotions body connection, but if I'm to be completely open I do notice some difference in myself during the last months, mostly that I'm less inhibited, more outspoken, less concerned of myself, and I thought that to be all good things, but maybe I'm missing something. Here's an idea: to make an appointment for a SRT with Patrick and Heather, that can't hurt right? I'm also waiting for Gabor Maté's 'When the Body says No' to arrive.

Yeah, I was just thinking that perhaps there might have been some connection to it in terms of leaving you 'weakened' but am probably off on that. I was also thinking along the lines of the Gabor Mate book and thought to just mention it as a possibility. I'm glad to hear you've gotten the book as it's really interesting.

Thanks for the concern and your post, it made me think. I'm sure I'll be all right, I'm not feeling too bad, and it's certainly nothing compared to the average suffering of human beings on the planet, so I'll manage. I just have to take the proper steps. I'm also hoping and will take action to be appointed with the previous hematologist. I have a feeling she might prescribe the bloodletting if I ask her to do so when I bring the results of the other tests and they turn out to be OK. I have faith she will understand, when I explain that it can't hurt and since my ferritin is quite high, it's worth to try and see if I'll start feeling better after a few bloodletting sessions. She was a lot nicer and seemed more open minded than the other one.

I also remember what my father said when I talked to him about my blood test, ferritin level and the need for bloodletting to lower it. He said that when he gave his blood when he was in army, which was maybe 20 years ago, he immediately started feeling a lot better afterwards. He is constantly complaining to have lack of energy and feeling drained, but he is ascribing that to his mental and 'religious burdens'. He is also taking fairly large amount of medication for his PTSD, so it might be due to medication, but it is possible that he has an iron overload going on, which causes the lack of energy, clouded mind, etc, that he thinks is psychological in origin. So, step by step forward!

I hope there's some value in this post of mine, since it's long and mostly me talking about myself, bla bla. have to look into it as well, the need to talk to much. :/ Please say if I overdid it.

I hope the bloodletting brings some relief.

I'm glad you posted about it as it may help you to find some answers as well as possibly help others. Feel free to update when you can whether here or in a separate post. :)