Friend just diagnosed with Sarcoidosis

[spacehoppa]

Hi everyone,

Sadly one of my best friends just phoned me last night to say she has been diagnosed with sarcoidosis. So far it's just in her nose and foot, and has not been seen in her lungs, but I worry that progression is possible.

So my question is, do any of you have sarcoidosis and have you had success with either the AP or a Lyme protocol? I'm going to see her next Friday and would like to be able to give her some useful info then.

I know Trevor Marshall had success treating his own sarcoidosis, but I am interested to know whether vitamin D avoidance is particularly important and whether a more regular version of AP can work in this disease?

Thanks so much everyone!! I am so worried for her. She has two kids roughly the same ages as my own.

ruth

[Mumof3]

Hi Ruth,

I am so sorry to hear about your friend. I know my doctor has a patient with sarcoidosis. The reason my doctor mentioned him is because we were discussing the different AP protocols. My doctor said that sarcoidosis is treated with the Marshall Protocol.

[vinny]

Ruth

My wife developed skin sarcoidosis real bad in 2006. It started with her eye, which required prednisone drops. It spread to most of her back, legs and face. It went into remission in the summer of 2008 and all her skin cleared up. I believe the trigger was when she stopped smoking or went off HRT. I can't say with any degree of certainty why it went into remission, but here is some of the things we were doing and still do.

1. Nature's Own, Maca Root Extract from Iherb.com  3/day

2. Colchicine 1or 2 time per day:she is taking this for gout; it has an anti-microbal effect killing Mycoplasma

3. Heliocare: used to block Vit D. No sunscreen was used. We dropped the Heliocare after one year.

I studied the Marshall protocol, but it is too complex for most people to follow. I would think that Minocycline would be a good candidate to try in view of the fact that Colchicine performs a similar killing action. It was my knowledge of the Marshall Protocol that lead me to this website and the treatment with Minocycline of my Psoriatic Arthritis that I developed in 2007.

vinny

 

Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

[spacehoppa]

Thanks Vinny!

That's interesting about colchicine being an anti-microbial – I didn't know that! And I've never heard of heliocare. I'll look it up. I'll also ask her about her hormonal status, but since she's recently had a baby, her hormones are probably all natural, but may be a bit all over the place from the recent pregnancy.

Do you know whether it's less likely to get organ involvement if you only have it in the skin? Did your wife's doctor say anything about that? It's so great that it went away. Is this the usual outcome do you think? What did it look like in the skin? Was it like psoriasis or did it look different? She has it in her nose and it looks like roseacea, and in her toenail, and it looks like a fungal infection there. They have told her they believe it started with an infection, which is why it amazes me that they don't think antibiotics should be part of the treatment!?!

My friend's doctor is saying they can get rid of it within a year or so, but I don't know whether that's realistic or they're just giving her the best case scenario?

Sorry for all the questions. It's just that I'm a real newbie to sarcoidosis.

Thanks also Mumof3. I have read about the Marshall Protocol, but doubt there's anyone offering it in the UK.

Thanks again! Any more info, greatly appreciated.

ruth

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