Reporting improvement.

SWAlexander

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So is the recommendation to have a male sibling tested, too, when testing us females for certain genes?
If the same methylated gene comes from a Y (male) and X (female) chromosome more genetic clarity is provided and closer to confirmation. Depending, if the male has the same methylated gene. Only one of my 3 brothers has a very close genetic pattern to mine.
 
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Wow! Soooo glad to hear (and see) so much improvement!
wow, that is just FREAKY Intense......the rash... WOW.

I had a horrific rash on my legs that I cleared away with chinese traditional herbs, and it took ten months.

I gave up thinking it would clear out, but kept up the tea because it helped me feel better otherwise.

My rash did not compute with anyone or anything. Not eczema, not psoriasis not dermatitis. Scary. Disappeared over a period of two weeks.

Its never returned. Been about 12 years at least.
 

SWAlexander

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wow, that is just FREAKY Intense......the rash... WOW.

I had a horrific rash on my legs that I cleared away with chinese traditional herbs, and it took ten months.

I gave up thinking it would clear out, but kept up the tea because it helped me feel better otherwise.

My rash did not compute with anyone or anything. Not eczema, not psoriasis not dermatitis. Scary. Disappeared over a period of two weeks.

Its never returned. Been about 12 years at least.
2 questions about your rash. Did you had then thrombosis or do you have a celiac disease blood test? Both are possible when you have MTHFR.
 
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Did you had then thrombosis or do you have a celiac disease blood test? Both are possible when you have MTHFR.
no not tested for anything like that.

mostly I don't get tested.

Are medical doctors supposed to suggest such things regarding rashes? I'm now reminded how worthless was THAT OTHER doctor I saw during the rash era.

He tells me to put cortisone creme on it. On HOW MUCH body surface? NO I don t think so, thats very dangerous DOCTOR.

Nothing further happened.

I mostly do Chinese.
 

SWAlexander

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no not tested for anything like that.

mostly I don't get tested.

Are medical doctors supposed to suggest such things regarding rashes? I'm now reminded how worthless was THAT OTHER doctor I saw during the rash era.

He tells me to put cortisone creme on it. On HOW MUCH body surface? NO I don t think so, thats very dangerous DOCTOR.

Nothing further happened.

I mostly do Chinese.
Inflammation can tricker mast cells to react, leading to blood clots, which also can and causes a rash.
 

lenora

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I'm here to warn about the dangers of basal cell carcinoma (one of the lesser skin cancers).

I had a lesion (didn't look like anything out of the ordinary) across my nose. It was cancerous; I had it removed and 25 stitches later I looked just like a witch with a black nose.

Fast forward 20+ years later. I'd had a cyst that formed on the side of my nose, but my dermatologist said the Moh's surgery alone can cause that. I took his word....then a second cyst appeared beside it. This time I insisted upon a biopsy and, of course, it was cancerous.

It had worked its way through my nose, to just under my eye and across my cheek. A big deal to remove and I'm still deciding if I'll go for the second surgery to repair the damage. Probably will...I just needed a break.

MY point: Please be careful in tanning beds, outside as this can also happen to you. It gets worse with age as our immune systems fail even more and I've had to make at least 6 trips or more thus far to this specialist. Cancer doesn't always look like a bad guy....a white flake of skin that doesn't go away could be cancerous, cysts. Don't be me; insist on a biopsy if things don't go away. I've been told by doctors that I HAVE to stay out of the sun, so I'm left with Vit. 'D' and I suppose I should get a lamp. I'm in my 70's by the way. Yours, Lenora.
 

SWAlexander

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Here is a summary. I gathered this as a basic guideline after I found out I have C1orf167, MTHFR.
What does it mean to be heterozygous for MTHFR?
People with a mutation in 1 MTHFR gene are said to be heterozygous; if mutations are present in both genes, the person is said to be homozygous or compound heterozygous for the mutation(s).
What happens if I have MTHFR?
If you have an MTHFR mutation, your MTHFR gene may not work right. This may cause too much homocysteine to build up in the blood, leading to various health problems, including: Homocystinuria, a disorder that affects the eyes, joints, and cognitive abilities. It usually starts in early childhood.
What happens if I have MTHFR? How do you detox if you have MTHFR?
MTHFR Mutation and Healing
Incorporate methylfolate-rich foods.
Eat foods high in natural folate.
Support your body's natural detoxification process through infrared saunas, IV glutathione, exercise, healthy foods, and chelation supplements.
Remove mold from your home.
Avoid toxins.
Manage your stress.
What foods to avoid if you have MTHFR?
People with MTHFR mutations may want to avoid foods that contain the synthetic form of folate, folic acid — though the evidence is not clear that's necessary or beneficial. Be sure to check labels, as this vitamin is added to many enriched grains, like pasta, cereals, breads, and commercially produced flours.
1 The MTHFR mutation is also believed to predispose a person to certain cancers, birth defects, and autoimmune diseases.


What vitamins should you take if you have MTHFR?
Most people who have MTHFR benefit from taking methylcobalamin (methylated B12). In addition, consume more natural forms of B12, folate, and vitamin B6 (also important in the process of detoxification), such as beans, lentils, asparagus, broccoli, and avocado.

How long does it take to detox MTHFR?
It can take anywhere from 3-12 months to full detox the body, and regular detoxing thereafter to maintain energy and keep inflammation at bay.

Can you take ibuprofen with MTHFR?
Avoid medications that can deplete folate or interfere with methylation when possible: birth control pills, anticonvulsants, antacids, antidepressants, Ibuprofen, aspirin, Metformin, cholesterol-lowering medications like cholestyramine, colestipol and colesevelam, some antibiotics, and some estrogen replacement ...

What supplements help with methylation?
Important methylation support nutrients include:
Riboflavin.
Vitamin B6.
Methylfolate.
Vitamin B12 in the form of Methylcobalamin.
Choline.
Betaine (trimethylglycine, TMG)
Magnesium.
Zinc.
I'm here to warn about the dangers of basal cell carcinoma (one of the lesser skin cancers).

I had a lesion (didn't look like anything out of the ordinary) across my nose. It was cancerous; I had it removed and 25 stitches later I looked just like a witch with a black nose.

Fast forward 20+ years later. I'd had a cyst that formed on the side of my nose, but my dermatologist said the Moh's surgery alone can cause that. I took his word....then a second cyst appeared beside it. This time I insisted upon a biopsy and, of course, it was cancerous.

It had worked its way through my nose, to just under my eye and across my cheek. A big deal to remove and I'm still deciding if I'll go for the second surgery to repair the damage. Probably will...I just needed a break.

MY point: Please be careful in tanning beds, outside as this can also happen to you. It gets worse with age as our immune systems fail even more and I've had to make at least 6 trips or more thus far to this specialist. Cancer doesn't always look like a bad guy....a white flake of skin that doesn't go away could be cancerous, cysts. Don't be me; insist on a biopsy if things don't go away. I've been told by doctors that I HAVE to stay out of the sun, so I'm left with Vit. 'D' and I suppose I should get a lamp. I'm in my 70's by the way. Yours, Lenora.
"Don't be me; insist on a biopsy if things don't go away"
I´´ll. Thanks for your warning.
 

SWAlexander

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I have test it for one week and found it is true for me - symptoms worsen and hair thinning and hair loss in addition to eating dark bread, such as rye and barley.

"What supplements to avoid with MTHFR?
Avoid all products with added or fortified folic acid which is the synthetic form of vitamin B9 found in fortified supplements (pregnancy supplements) breads, cereals and commercially produced flours. Avoid processed foods that have synthetic folic acid added to them if you have combined with other hereditary traits, such androgenetic alopecia (AGA) or sickle cell."
 

SWAlexander

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Reporting small steps of progress. I was shopping and came back after 1 hour - tired but not exhausted.
Now for one month truly wonder about my eyes. It couldn´t be a cataract because this haze in my eyes appears after I´m up for about an hour. The haze started in Dec 2020. It was useless to ask a doctor. She told me to take eye drops for dry eyes. Then yesterday I remember something my eye-doc told me back in 2014. I called my eye-doc Albuquerque and I got the answer. In my med. records was a note "dry eyes related maybe to Sjögren's syndrome".
I know what Sjögren's syndrome is, but I never checked my DNA for it until this morning - and here it was.

1635430266215.png

Then I went to the website: https://www.sjogrens.org/understanding-sjogrens/treatment
Looks like I can´t win.
 

SWAlexander

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I mentioned cortisol a few times before.
Now more than ever I'm convinced that cortisol is playing a vital role in low energy. I stopped prednisone at beginning Oct. and my energy level went down slowly. The last 2 week I could not go to the tanning studio and only one time grocery shopping. Last Sunday I started with 5 mg prednisone again and feel much better.
I´m not alone believing that a cortisol test should be a part of the research.
These are some of the symptoms: https://www.mayoclinic.org/diseases-conditions/addisons-disease/symptoms-causes/syc-20350293
 
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lenora

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Yes, while you're on any steroid you feel like Superman....really, really good. Unfortunately, when you go off it, the bottom falls out of the world again for about 10 days.

Be especially careful of weakness and falling. I wouldn't even leave the house in case you hurt yourself during this period of time. Soon you'll reach your tolerable point again.

I've had this happen a few times....and each time I'm shocked at how weak I am, even though the hospital has given me plenty of warning. Not the time to try to be active and get out there and show 'em. This is seriously underestimated all of the time. Yours, Lenora.
 

SWAlexander

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Yes, while you're on any steroid you feel like Superman....really, really good. Unfortunately, when you go off it, the bottom falls out of the world again for about 10 days.

Be especially careful of weakness and falling. I wouldn't even leave the house in case you hurt yourself during this period of time. Soon you'll reach your tolerable point again.

I've had this happen a few times....and each time I'm shocked at how weak I am, even though the hospital has given me plenty of warning. Not the time to try to be active and get out there and show 'em. This is seriously underestimated all of the time. Yours, Lenora.
Lenora, you are always very caring. Thank you.
I know about the effect of cortisone, but what can I do? I live by myself and I must manage everything by myself. Lack of cortisol can cause adrenal crisis.
Just a few days ago found out, and still surging for a relationship between low Potassium and low cortisol. In 2016 I had, after surgery, frequently calls from the hospital that my potassium is “dangerously” (3.) low (hypokalemia). Getting too little potassium can increase blood pressure, deplete calcium in bones, and increase the risk of kidney stones.
At the same time my cortisol level was 2.5. This was the time all ME/CFS symptoms and POTS (blood pressure 196) brain fog had me down and nonfunctional.
 

Judee

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dry eyes related maybe to Sjögren's syndrome
https://www.snpedia.com/index.php/Rs10488631

If I'm reading that snp number correctly I also have C,T on it.

I have two family members with Lupus and have suspected Sjogren's at times for myself too but all the regular tests come back negative.

I asked a couple times for the "Early Sjogren's" test but none of the doctors at my clinic seem to know what that is. From what I've read online, the Early Sjogren's is more sensitive in detecting it. Ultalabs has the test but it's $1500. Yikes. Not gonna happen.
 

SWAlexander

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https://www.snpedia.com/index.php/Rs10488631

If I'm reading that snp number correctly I also have C,T on it.

I have two family members with Lupus and have suspected Sjogren's at times for myself too but all the regular tests come back negative.

I asked a couple times for the "Early Sjogren's" test but none of the doctors at my clinic seem to know what that is. From what I've read online, the Early Sjogren's is more sensitive in detecting it. Ultalabs has the test but it's $1500. Yikes. Not gonna happen.
Judee
Lupus can only be detected when symptoms are wild. Besides, it was a rheumatologist who finally looked for Lupus after I showed him my DNA and had a rash.
Only a dedicated endocrinologist will order tests for Sjogren's. I was told I would not need further test since I have an autoimmune disorder, even my eye Dr. asked for.
I wonder how much the healthcare system is worth, when we have to live with the systems and no help.
 

lenora

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Hi @Judee, I don't have anything to add that may help you...as if you need another problem, huh?

However, @SWAlexander.....why not ask your specialist about prescribing potassium med for you? I have to take additional potassium myself and it really does make a difference and is very simple. It may save you from a lot of worry. Also have a walker on wheels & a seat handy. You never know when you'll need it. You can buy one from Walmart....save you money instead of renting one. Yours, Lenora.
 

SWAlexander

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Lenora, all my tests and diagnoses came from specialists in the US. I live now in Germany, waiting now for 2 1/2 years to see an endocrinologist. If I’m lucky, I`ll see one on Monday. I`m not sure about their knowledge and how much they really care here.