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Diagnosed with Cyclic Neutropenia around age 19; any Paleo ways to treat or prevent the symptoms, and/or overcome the disorder

Answered on August 19, 2014
Created November 09, 2012 at 5:40 PM

I was diagnosed with Cyclic Neutropenia at the age of 19 during my first year of college (I just turned 25). Cyclic neutropenia is a disorder that causes frequent infections and other health problems in affected individuals. People with this condition have recurrent episodes of neutropenia during which there is a shortage (deficiency) of neutrophils. Neutrophils are a type of white blood cell that plays a role in inflammation and in fighting infection. As an affected individual my neutropenia recurs every 21 days and lasts about 3 to 5 days, typically right before my cycle.

Neutropenia makes it more difficult for the body to fight off pathogens such as bacteria and viruses. The most common issue I have is the development of mouth sores inside my mouth and on my gums and tongue. I have found no way to prevent these. They just show up during an episode of neutropenia.

To show how rare Cyclic Neutropenia is, it is estimated to occur in 1 in 1 million individuals worldwide. Thanks to my fathers genes, both me, my twin, and younger brother have it. Ironically, my father did not know he had it until I was diagnosed with it.

When I was diagnosed with it by a blood specialist, he basically said the only remedy is to stay healthy, and if I wanted, there were injections I could give myself to boost my white count when it dropped during neutropenia. However, I declined the injections. I see no need for them unless I get a serious and/or deadly infection.

Honestly, I live a normal life. I think this disorder can affect individuals worse than others, especially if they live very unhealthy lives: lack of sleep, stress, poor diet, no exercise, smoking, binge drinking, etc.

Luckily, my only affects are mouth sores, getting cold easily, and bruising easily. And of course, I am more prone to catching a virus or bad bacteria.

I was hoping there may be a Paleo remedy(s) prevent or treat the mouth sores, or in fact a remedy to ultimately fight back against the disorder.

Now that I have started switching to Paleo, I think my new diet with aid the easy bruising and lack of enery. I'm a chick, so I think I am just stuck with getting cold easily :)

All suggestions and advice are welcome.

97d98cdf2f18fa2c0bd8567ea1159609

(1047)

on November 09, 2012
at 08:22 PM

Continued... I see no need to give myself the white count boost injections during neutropenia he suggested. I am totally for trying homeopathic remedies though.Thank you for your suggestions! I am just hoping to find something to help prevent and relieve my mouth sores since I get them almost every month. And hopefully, now that I've started Paleo, my new diet will help prevent me from getting infected from viruses and infections, and in a way kick start my immune system to counter the neutropenia.

97d98cdf2f18fa2c0bd8567ea1159609

(1047)

on November 09, 2012
at 08:20 PM

Continued.. It was passed down from my father who did not even know he had it.Are family was just used to getting mouth sores.Then we found out there was a reason why we continuously developed them. But honestly, I live a completely normal life, the doctor just said to eat healthy, sleep, exercise, stay as stress free as possible, & stay away from a lot of alcohol and such.I am just more prone to viruses and infections.

97d98cdf2f18fa2c0bd8567ea1159609

(1047)

on November 09, 2012
at 08:16 PM

ebgaky - Thank you for the informative response! I've never heard of pulling sores before. Typically to relieve the mouth sores I put salt on them or use l-lysine. The mouth sores are the most prominent side effect I get. Sometimes I feel really tired during neutropenia or I get sick since my white count drops. During my diagnosis the doctor took my blood twice a week for 8 weeks. he watch my counts rise and fall in a pattern every 21 days. For instance, a heathly white count could be around 4, but mine would be around 2.5 and drop to 2.1. I don't know if it is hormonal, but it is genetic.

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4 Answers

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1
28dab519706b8b296b600907c88bec16

on November 09, 2012
at 07:09 PM

I'm sorry to hear of your illness. I hope you can find some relief soon! You might try oil pulling for your sores. There are some posts on this site about it, and also some decent info comes up on google. Basically you swish ~1Tbs of oil (sesame, sunflower, and coconut are popular) in your mouth, like mouthwash, for 15-20 minutes in the morning on an empty stomach. Some people say you can do it multiple times a day, but always on an empty stomach. You could do it every day, as many people do, or maybe start a few days before you expect your symptoms to arise/when the sores begin? I kind of subscribe to the whole mind-body healing thing, so I like to listen to a 20-minute meditation (you can find tons on YouTube) and focus on "feeling" the oil heal my mouth. A lot of people report relief from ulcers, deep pockets, sensitive teeth, etc. I am not familiar with your disorder, however, so you should probably check with your doctor, if after further research you're unsure whether it is safe for you. It seems to be a fairly gentle treatment, though. It's not really paleo-related, but you could also do some focused meditation in bed before you go to sleep, maybe just a few minutes of deep breathing and repeating a positive thought, like "my body is protecting and healing itself" or something. Even if it's just a placebo effect, at least it can provide safe relief and maybe even help your immune function. The fact that your disorder is cyclic is very interesting, since you can predict when your symptoms will arise. You said the neutrophil deficiency basically coincides with your cycle... Do you know if the disorder is hormone-related? Hopefully someone will have some insight on that. Other things I would try if I had the same symptoms: sinus irrigation (like a neti pot), aromatherapy steam treatment (you can do this in the shower by rubbing a few drops of essential oil(s), diluted in a carrier like jojoba, on your chest and under your nostrils and breathing deeply; research different oils, only use high quality natural extracts, and check your skin for sensitivity first) These aren't really paleo as I understand it, but they give me relief from a lot of inflammatory symptoms in my mouth, nose/sinuses, and lungs, and topical use of certain oils helps when my skin flares up. Also, both the saline used in sinus cleansing and many essential oils have anti-microbial properties, which might help you fight off an impending infection. I understand that others on here might totally disagree with using these techniques, particularly in terms of killing beneficial microbes, and I do not necessarily consider contrary opinions invalid, I just do what seems to work for me.

Additionally, for prevention suggestions, maybe search on PH for "immune" or something similar and check what people have posted, although I think the immune system is a fairly hotly-debated topic on here from what I've seen. Best of luck and sorry for the rambling post!

97d98cdf2f18fa2c0bd8567ea1159609

(1047)

on November 09, 2012
at 08:20 PM

Continued.. It was passed down from my father who did not even know he had it.Are family was just used to getting mouth sores.Then we found out there was a reason why we continuously developed them. But honestly, I live a completely normal life, the doctor just said to eat healthy, sleep, exercise, stay as stress free as possible, & stay away from a lot of alcohol and such.I am just more prone to viruses and infections.

97d98cdf2f18fa2c0bd8567ea1159609

(1047)

on November 09, 2012
at 08:22 PM

Continued... I see no need to give myself the white count boost injections during neutropenia he suggested. I am totally for trying homeopathic remedies though.Thank you for your suggestions! I am just hoping to find something to help prevent and relieve my mouth sores since I get them almost every month. And hopefully, now that I've started Paleo, my new diet will help prevent me from getting infected from viruses and infections, and in a way kick start my immune system to counter the neutropenia.

97d98cdf2f18fa2c0bd8567ea1159609

(1047)

on November 09, 2012
at 08:16 PM

ebgaky - Thank you for the informative response! I've never heard of pulling sores before. Typically to relieve the mouth sores I put salt on them or use l-lysine. The mouth sores are the most prominent side effect I get. Sometimes I feel really tired during neutropenia or I get sick since my white count drops. During my diagnosis the doctor took my blood twice a week for 8 weeks. he watch my counts rise and fall in a pattern every 21 days. For instance, a heathly white count could be around 4, but mine would be around 2.5 and drop to 2.1. I don't know if it is hormonal, but it is genetic.

0
89f8698ef80a18594200f46b7932182d

(0)

on April 18, 2013
at 01:56 AM

Hi, my little girl 16 mo was just diagnosed with the same thing. I am happy to read that you have lived a healthy life, and you seem happy. Your parents must be so proud. Thank you for sharing your story.

0
Ce41c230e8c2a4295db31aec3ef4b2ab

(32564)

on December 30, 2012
at 09:15 PM

Get your D3 blood level tested. Ask for the 25(OH)D test.

Sun/supplement to a blood level of 60-80 ngl/ml to help boost your immune system. I haven't been sick in over 3 years, since I did this. I keep my blood level around 80 ng/ml.

More info at www.vitamindcouncil.org

0
Eb64373eb7893b9fe38da271ad0f3010

on December 30, 2012
at 08:27 PM

Hi there, My story is quite similar to yours. I was diagnosed two years ago when I was 20 and just starting my posgrad diploma. So not great timing! I'd always been prone to coughs, colds, sinus, infections UTI's, verrucas and coldsores since I was very young. My GP never investigated the recurring infections until I went to him with insomnia, severe weight loss and constant diarrhoea, he then ordered bloods to be done. Two days later I got frantic phone calls and went straight to his surgery to be told my neurtophils (something I'd never even heard of) were dangerously low at only 0.2. I didn't really understand the seriousness of it until I was in hospital getting a bone marrow aspiration to rule out any blood cancers. My levels never go over 0.8 and fluctuate to 0.2. Even with the GCSF booster my levels reach about 1.5. All autoimmune diseases have been ruled out and I also do not have the gene that causes cyclic neutropenia. So my haematologist is pretty dumbfounded as to why this is happening. I also refuse to become dependent on the GCSF partly because it involves pumping extra hormones into my body, but also because of the horrible side effects I get from it. My levels last month were 0.2 and I had a bad infection and as a result had to get the GCSF booster. I'm sick again now and I can look forward to spending my second New Years eve in my haematology unti for the second year in a row. Basically I would love to hear of some ideas that you have tried to try and naturally enhance your immune system. I've just started a new job, my dream job and I am increasinly paranoid that this condition could threaten my employment there. It is rare to come across another person with the same condition so I would love to hear some suggestions back :)

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