Hw many had allergies 1st before their Rheum disease?

[A Friend]

@BG wrote:

AF,
I do hope my experience helps someone. I believe genetic research will be immensely helpful in guiding prevention as well as treatment in the very near future….

…..Also, since you brought up Linus Pauling’s work, I thought I’d share another finding of my DNA analysis. I am a carrier of the genetic condition hemachromatosis (excess iron buildup in the tissues/organs) I don’t have hemachromatosis myself, I just carry one gene for it, but if my chidren’s father also carries a gene for it, or has two genes for it, then my children may have it and should be tested for it so that they can prevent organ damage over time. One of the things someone with hemachromatosis must avoid is excess Vitamin C (oral consumption as well as IV infusion, especially IV infusions) because excess Vitamin C increases the buildup of iron in the organs and can lead to serious health problems fairly quickly. When discussing this with my father’s doctor, she informed me it’s common in the area where I live because of the high concentration of people of northern European descent. I am 57 years old and absolutely no physician has ever mentioned it before or tested me or anyone else I know for it. It can lead to very serious health consequences later in life, after age 40 or 50, including dementia and organ failure so I consider failure to test for this a serious form of malpractice….
Barb

Barb, I was curious to know if this subject was discussed by some researchers I was familiar with. This is the first one I skimmed through, but the two further down should prove very interesting. This link refers to input by some who are familiar with vitamin C research: http://www.doctoryourself.com/iron.html

These two may be of most interest, as they seem to be relating to a previous controversy on this subject:
These is Part 1, with Part 2 below it:
http://www.drpasswater.com/nutrition_library/frei1.html

http://www.drpasswater.com/nutrition_library/frei2.html
New Research Findings On Vitamin C Safety: An Interview with Dr. Balz Frei
Part 2: Vitamin C and Iron Overload Disorders
By Richard A. Passwater, Ph.D

AF

[lrobertson]

Interesting question and I’ve thought of it myself many times. Yes, I did have allegies for years. Always had a kleenex tissue in my hand. Then when I got RA, the allergies mysteriously dissappeared. I will take the runny nose and sneezing any day over the pain and joint destruction. If I could just find a way to switch my immune system back……………………….

[Trudi]

@BG wrote:

I consider failure to test for this a serious form of malpractice. I tried to get my adult children to get tested for it but because their doctors have never mentioned it before, they don’t think it’s necessary.

Barb–
I agree with you. Do your children at least test for their ferritin levels? I haven’t done the DNA test, but I think I may; my grandfather had hemochromatosis and my OBgyn told me never to take iron supplements because my iron level was high after giving birth. I’ve been monitoring my ferritin levels. I’m thinking now that this may not be enough.

Thanks for posting this information,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[cavalier]

Ditto to this Barb thank you!

I was wanting to check my ferritin levels and just recently did no results back as of yet, but now I wonder if this is enough. What would one do to find out if they have any indication of hemochromatosis ? This could be good info for my sons as well.
Was this only found out by this DNA test or otherwise?

Laura – i too had a close relationship with kleenex & now this has largely abated compared to what i was once like – i would like you trade & take back the former.

Best – Jill SD, Lyme & bartonella

[Krys]

I’m hesitating to post, because I don’t think it’s of interest to anybody within this thread. I’ll be happy to delete it!

Great question and a fascinating thread!
Yes to allergies.
Since 1 year old — allergy to cow’s milk + eggs, hyper reaction to insect bites.
I believe it was the result of impaired gut flora, denatured baby formula, heavy metal poisoning.
2 months old: double lung pneumonia, abx followed. At 4,5 months’ old switched to baby formula (cow’s milk powder: hence: denatured, pasteurized, difficult to digest milk devoid of enzymes). At 6 months of age probably lead poisoning (ate a bunch of newspapers followed by severe few days’ diarrhea).
Chemical sensitivity after 2 bullseye rashes at 8-10 years of age.
After 7 year long exposure to mold toxins, 2 years prior to my present onset of Lyme, chemical sensitivities sky-rocketed + new ones to dust mites, cats, etc. After the present onset of Lyme: additional allergy to gluten, food dyes, corn, starch, bananas, pineapple + occasionally more.

http://www.doctoryourself.com/iron.html

A known hemochromatosis (HC) patient should not take mega doses of C. As for the rest of the population, I recommend a low heme-iron diet, which is a low meat or meat-less diet. Vegetarian diet provides a non-heme iron, and even with mega C, there seems to be a normal iron absorption shut-off.(1) I think excess dietary heme iron may be the real problem, not vitamin C. The body can relatively easily absorb more heme (meat) iron than it needs. When and if vitamin C has a negative effect in HC patients, it is probably due to release of stored iron, not new absorption. (2)

I was pondering over my latest blood tests which initially did not make sense to me:
……………result……………………….reference range
WBC________3.5_____L_________________4.0 – 10.0
RBC________ 3.62____L_________________4.1 – 5.4
Hemoglobin_12.1______________________12.0 – 17.0
Hematocrit_35.4_____L ________________38 – 44
MCH_______33.5_____H_________________27 – 31 (mean corpuscular hemoglobin)
iron serum__109_______________________55 – 165
iron binding 188___L__________________257 – 369
ferritin_____72.5_______________________11 – 307
Ferritin level 5 days earlier, different lab 117 (range 13-150)
transferritin saturation 58________________ >= 15

Ferritin 117 (normal range 13-150) is the result of daily meat intake and I did not take any C for 2 days prior. I was slacking on all supplements that week.
Ferritin 72.5 (normal range 11-307) is the result after no meat for 3 days prior to tests. I wanted to have good results and kept my diet to vegetables, fruit and raw juices, took 7 grams of C, Quercetin 2x 3 caps, Curcumin 2x 3 caps a day.
I believe it fell down due to Low Iron Binding, which must have been due to increased intake of C. As Iron Binding was not tested the first time (I only tested prolactin and ferritin as autoimmune markers), my conclusions may be pure conjecture.
Krys

[BG]

Trudi, my children have never had their ferritin levels checked. No doctor has ever thought it necessary. My ferritin levels have never been checked either for the same reason. When I was younger, doctors told me I was anemic and to take iron supplements plus eat more red meat, etc., but they never actually tested my ferritin levels.

Jill, I learned I was a carrier of hemochromotosis through the DNA test. I had never heard of the condition before I got the results of the DNA test back.

Very interesting Krys. Thanks for sharing.

Barb

[Trudi]

@BG wrote:

Trudi, my children have never had their ferritin levels checked. No doctor has ever thought it necessary. My ferritin levels have never been checked either for the same reason. When I was younger, doctors told me I was anemic and to take iron supplements plus eat more red meat, etc., but they never actually tested my ferritin levels.

Barb–
As I mentioned in a previous post, I have been monitoring my ferritin levels for quite some time, so I have a good record of my numbers. I felt the very best when my levels were at 11. When I first saw the LLMD my #’s were 266. I couldn’t do phlebotomy because my hematocrit was too low. However, with treatment it did drop down to 69 (we think it was inflammation–ferritin is also an inflammation marker) and is now 116.

I asked my son to have his ferritin level checked. His doctor had no problem complying. His level was within the reference range, but to my thinking too high–hence my wanting to get the DNA test in hopes to put my concerns to rest. I spoke with my neighbor this morning who is in the medical field on her thoughts about genetic testing. She said “knowledge is power” and since the tests are not prohibitively priced she would go for it. Did you have any reservations about having the DNA testing done?

Thanks for sharing your information–
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[notabene]

Jill – I first got hayfever at age 12, which persisted for 22 years. Then, 27 years ago I moved to LA, Providence and Geneva, all places without the allergens that affected me. They stopped long before my scleroderma onset in 2011, but maybe that could partially explain why I have a relatively mild case.

Now I have a slight post-nasal drip, but only when I move suddenly. Who can explain all of this?

[BG]

Trudi,

I didn’t have any reservations about getting my DNA testing done because I already knew what would most likely be found based on my medical history and the medical histories of members of each of my parent’s extended families, all of which I had researched extensively and had found peace with (that is to say, acceptance of the inevitable). Also, I no longer have anything to lose since I no longer have health insurance or employment due to the severity of my health problems.

After reading all of the fine print carefully and thinking things over many times over many months, I decided I wanted to know bad enough and wanted science to learn from my DNA and health history bad enough so as to help future generations, maybe even my own children and grandchildren, that I went ahead with it.

I would not recommend having your DNA analyzed until you understand all of the potential consequences of doing it because it is all relatively new science and much is unknown (and it’s online forever, as is most everything else these days). I did learn something from my DNA that I would never have predicted and that was somewhat shocking at first but that I understand now after researching it. If you’re going to have your DNA analyzed through a commercial company instead of a medical provider, one needs to be prepared to deal with such info because there is no one to protect you from it, ease it to you gently, help you sort it out or understand it better, or counsel you about what to do about it. They do offer a genetic counseling service from another company that you can purchase if you need it. I didn’t purchase it so I don’t know any more about it than that. The offering of the service accompanied the revealing of certain kinds of DNA results. If you have such results, they also forewarn you that the information might be difficult to handle on your own and offer you the choice of learning about it or keeping the info sealed (unknown to you) so they do their best to prepare you for what you might learn before you learn it. In my case, I had one APOE4 gene which I already knew might be there based on family history and it was one of the reasons I wanted to have my DNA tested. I was relieved to learn there was only one such gene because I had mentally prepared myself to learn I had two such genes. Having only one lowered my risk of getting Alzheimer’s substantially.

I hope this helps you make a decision. I truly believe DNA analysis will be a permanent part of our medical records in the very near future.

Barb

[A Friend]

[If for any reason this post needs to be removed, feel free to do so. It can be shared privately. AF]

Regarding warnings about Vitamin C in the replies so far… While reading the replies on this thread, I realized how confusing the currently found and available reading on Vitamin C is — even by those in positions of trust that we need to rely on. For this reason, I feel I must post this further information found on this subject — hoping for the “truth” to be known, whatever that is.

I’m grateful for this thread, and for the information shared with us (by BG, Cavalier, Jill, Krys, Barb, Laura, Trudi), and for the important questions raised pertaining to it. From such as this sometimes comes even more knowledge than we had expected. Somehow, I couldn’t help think back on Dr. Thomas McPherson Brown’s own journey, work, book, etc. and all the naysayers (then and now) that continue their naysaying in spite of the progress of so many… and case-in-point… especially those with SD (Scleroderma) whose life expectancy back then was generally thought to be 5 years. Look how AP has drastically changed that! May Dr. Brown’s tribe increase!!! Now, for the reason for this post from me and why I believe it’s so important that the truth be known.

Hope this doesn’t cloud the issue… or confuse any of us further… but after reading this link below, it is believed it should be shared so we can get to the truth of the problems/actual results. Even after the book by Dr. Pauling, which I’ve quoted before (and in this thread), he later addressed the stance taken by many on Vitamin C. If you read about it, you will see where the truth appears to have gotten lost even back then.

Excerpt copied/pasted, and I consider reading all of it required reading for myself:

Creation of Orthomolecular Medicine News Service

http://www.doctoryourself.com/news/v5n2.html

Excerpt:

I see the creation of the Orthomolecular Medicine News Service as an increasingly necessary step to counter the pharmaceutically-biased factoids and vitamin misinformation that the media seem ever so ready to accept uncritically. The recent allegedly-negative E and C studies bear this out. ( http://www.doctoryourself.com/safety.html/ )

---

Larger Excerpt:

“It is a matter of common knowledge that any processing that foods undergo serves to make them more harmful than unprocessed foods.” (McDonald’s Corporation legal statement, shown in the documentary “Supersize Me”)

The DOCTOR YOURSELF NEWSLETTER (Vol. 5, No. 2 for January 5, 2005) “Free of charge, free of advertising, and free of the A.M.A.”

Written and copyright 2004 by Andrew W. Saul of http://www.doctoryourself.com , which welcomes 1.5 million visitors annually. Commercial use of the website or the contents of this Newsletter is strictly prohibited.

ORTHOMOLECULAR MEDICINE NEWS SERVICE

My long-time readers have likely taken notice that the DOCTOR YOURSELF Newsletter is now a monthly. Yes, after five years of twice- monthly publication, I am giving a nod to the reality of some 30,000 hits a day at the http://www.doctoryourself.com/ website. There is only so much time in a day.

The good news: I will continue to assail your ears about every four weeks or so with my edifying editorials and health hints. And, there is still NO CHARGE for the Newsletter. (To subscribe to the Doctor Yourself Newsletter: newsletter-subscribe@doctoryourself.com )

Here’s the really good news: With my copious new free time, I am beginning another project: the ORTHOMOLECULAR MEDICINE NEWS SERVICE. Like the Associated Press or Reuters, OMNS is a wire-service style news feed directed to members of the press, radio and TV news media.

We have authoritative scientific clout and plan to use it. The OMNS editorial board consists of:

Abram Hoffer, M.D. Hugh D. Riordan, M.D. Harold Foster, Ph.D. Bradford Weeks, M.D.

I see the creation of the Orthomolecular Medicine News Service as an increasingly necessary step to counter the pharmaceutically-biased factoids and vitamin misinformation that the media seem ever so ready to accept uncritically. The recent allegedly-negative E and C studies bear this out. ( http://www.doctoryourself.com/safety.html/ )

Now with many hundreds of media email addresses, both newspaper and TV, we will shortly go ahead with a mass e-mail press release and inaugural announcement.

YES, YOU TOO MAY SUBSCRIBE TO THE ORTHOMOLECULAR NEWS SERVICE, free of charge. To do so, you will need to promptly send a blank email to omns-subscribe@doctoryourself.com . (Requests to other addresses, such as my regular email address, will not be processed.)

ASCORBATE: THE SCIENCE OF VITAMIN C

“It’s not what we don’t know that harms us, but what we do know that ain’t so.” (Eubie Blake, 1883-1983)

What is it about a little left-handed molecule of six carbons, six oxygens, and eight hydrogens that ticks off so many in the medical community?

[To read the rest of the link, click on http://www.doctoryourself.com/news/v5n2.html

[cavalier]

Great info Barb! Alot of good thoughts. I feel much the same way about being prepared when one does these tests – I am still coping with what I already know so far & the more I dig seems to be not good, granted it is what it is & there regardless but emotionally so much one can handle sometimes at once – I think this has alot to do with why I have put this off but it is a reminder to me that better to face the things lurking if one wants to increase their odds of getting better.

Nancy – it seems to be at least one piece of the puzzle for many possibly putting the immune into dissarray & how the door got opened to opportunistic infections to take root.

AF will take a look at the links – Tx always open to anything about Vit C.

best – Jill SD, Lyme & Bartonella

[Trudi]

@BG wrote:

After reading all of the fine print carefully and thinking things over many times over many months, I decided I wanted to know bad enough and wanted science to learn from my DNA and health history bad enough so as to help future generations, maybe even my own children and grandchildren, that I went ahead with it.

I would not recommend having your DNA analyzed until you understand all of the potential consequences of doing it because it is all relatively new science and much is unknown (and it’s online forever, as is most everything else these days).

I hope this helps you make a decision. I truly believe DNA analysis will be a permanent part of our medical records in the very near future.

Barb–
Thank you so much for your thoughtful reply. I’m torn between getting just the hemochromatosis DNA test or the one that you took which includes so much more (and for only an additional $60). So I need to decide how much do I really want to know. I’ve thought about this for at least 8 years–and will continue to mull it over some more.
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[jaminhealth]

I “WAS” the allergy/sinus queen prior to 1995, had allergy problems all my life prior, went the whole 9 yards, allergist etc….no healing….

Then in 1995, I went to a lecture on Pycnogenol and we were told it “MAY” prevent cancer….that was good enough for me to
start on it.

A month or so on this antioxidant my allergies/sinus issues began to leave me…..I was not taking any allergy meds (OTC) types anymore….

Long story short, 17 yrs later, I’m allergy/sinus free and switched to Grape Seed Extract the 2nd yr and doing very very well on this antioxidant…..and no cancer either….

I don’t deal with RA, etc. with OA and Fibro issues…but no allergy misery.

grapeseedextract.com is a good site to learn more about Grape Seed Extract. I’m not endorsing the company, but I like what they say…. jam

[cavalier]

Barb & all – i wrote to 23andme in regard to if Systemic diffuse Scleroderma if on their genetic panel would it show up – this is their response below I posted their link 1st & then the message they shared – it is interesting that the limited would show up on their test but NOT diffuse SD. i am glad I asked while there well maybe other things & probably is – they saved me some money as that is specifically what I wanted to know if any markers for that might show up in the genetic profiling – leads me to think it is as some suggest more of a enviro issue perhaps – enviro encompasses bacteria etc. – Jill

http://spittoon.23andme.com/health-traits/the-war-waged-within-autoimmunity-in-women/

Tiffany B., Sep 14 02:26 pm (PDT):
Hello Jill,

Thank you for contacting the 23andMe Team. 23andMe currently reports on Limited Cutaneous Type Scleroderma, not the diffuse type. You can read our sample report for Limited Cutaneous Type Scleroderma at this link: https://www.23andme.com/health/scleroderma-limited-cutaneous-type/

Also may be of interest, during National Women’s Health Week in May, we published an article about autoimmune conditions and women: http://spittoon.23andme.com/health-traits/the-war-waged-within-autoimmunity-in-women/

The 23andMe Personal Genome Service is a personal DNA analysis service providing information and tools for consumers to learn about and explore their DNA. 23andMe does not provide medical advice and the service has not been approved by the FDA for diagnostic testing. Though many of our current and planned Health articles report on the state of the science related to studies related to specific health conditions, it is important to remember that the feature is neither an approved diagnostic tool nor a substitute for a healthcare provider’s advice.

23andMe believes that genetics is only part of the picture of any individual’s state of being. The state of the understanding of Genetic Information is rapidly evolving and at any given time we only comprehend part of the picture of the role of genetics. Only a trained physician or other healthcare professional can assess your current state of health or disease, taking into account many factors, which may include your genetics as well as any current symptoms.

[Author]

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