A story about journey to an Autoimmun... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,402 members10,612 posts

A story about journey to an Autoimmune diagnosis .

Bloodredroses profile image
28 Replies

Please bear with , on link , scroll the whole article , ( don’t judge it first) . I do read TV personality stuff if they interest me (. I am shallow like that, 😂 ) but it leads to places. Read to paragraph that features this TV personality’s journey of illness and extreme autoimmune symptoms , the right Dr’s diagnosis and successful treatment ( not cure , as we know ) . Too much for me to screenshot just the related to ; and post on here .

The specific paragraph substititle is

JD Scott has battled a mystery illness behind the scenes

Read More: nickiswift.com/34712/reason...

Posts and lists of symptoms on APS threads very similar . (We need more Drs like this to recognise ‘mystery ‘ symptoms . )

I could relate ,to the sensitivity to heat ( and cold) heart afibs in the attacks , total unwellness . I found it very relatable .

Reasons We Never Hear About The Property Brothers' Other Brother

Read More: nickiswift.com/34712/reason...

Written by
Bloodredroses profile image
Bloodredroses
To view profiles and participate in discussions please or .
28 Replies
GinaD profile image
GinaD

Sadly, at least here in The States, most physician textbooks are financed, or even written, by Big Pharma. So most doctors have only a glancing knowledge of the relationship between diet and health! They know that salt is bad for high BP, but do they know how modern dirt effects health. For instance, wheat has been bread to increase longevity and so the gluten in modern wheat is much higher than what our ancestors ate! Which means wheat is now associated with autoimmunity! How many doctors know that? Our diagnosis founder, Dr. Graham Hughes certainly made that connection, which Is why I eliminated gluten from my diet snd my energy level soared --SOARED! --within days! I now pay extra for organic when I can and filter my tap water. And though I remain on warfarin with a low INR goal, all my APS blood markers have disappeared!

Bloodredroses profile image
Bloodredroses in reply toGinaD

Gina D Mine also in negative , but auto immune , fatigue bad , cold sensitivity ,( like gent in article ) .no gluten , sugar, alcohol or tap water . Bottled spring .

At least in USA you can find those Drs like the one mentioned in the article treat ‘Mystery illnesses - autoimmune; holistically , test , symptoms , treat . Even privately , not exist in UK, not in NHS that does this . I would love to consult with the one named in the article ( Las Vegas ) . My friend in Texas was cured of black mould in the body by this type of Doctor also . 🙏🏻

GinaD profile image
GinaD in reply toBloodredroses

Cleveland Clinic Functional Medicine tested and revealed that, probably because I grew up in a Southern WVa coal camp, I have high -- not toxic, but close - levels of heavy metals which ( coincidentally? ha ha) are the same heavy metals associated with coal production, This means that though the small levels of such metals in a water supply are considered acceptable; But since my levels are already up there, it doesnt take much to send me over the top and into symptom land. They suggested chelation, but I said No due to a then unidentified allergy to lots of meds. Now that I know its PEG allergy I will keep chelation as a possibility.

Bloodredroses profile image
Bloodredroses in reply toGinaD

Yes very interesting . We forget to take into account childhood environmental conditions . I grew up in sweet shop ! I would love to get all the tests and nec treatments . Maybe I will get to this Doctor in Las Vegas . Easy to get flights/ hotels from London . Fluoride was put in water in England for teeth decay prevention, in the 50 s 60 s ? I had a lot of the metal fillings ,( removed 10 years ago ) but the metals could have stayed in body . Heavy metals causes brain fog /fatigue . How does auto immune APS react to intravenous chelation therapy? Any news of that ? 👋

KellyInTexas profile image
KellyInTexasAdministrator in reply toBloodredroses

I recommend if you want to see a doctor that understands APS plus toxins and environmental triggers , you book a private appointment with Dr Jill Schofield. She is with center for multi system diseases in Denver Colorado,

She is an Auto immunologist / Rheumatologist. She specializes in ApS, MCAS, POTS, EDS, and is very thorough about getting to the bottom of environmental toxins as well.

She did a fellowship under Prof. Hughes at the London Lupus Centre,

Many doctors who are “Functional” do not always have the additional expertise in rheumatology, or understand the need for western medicine when appropriate.

Bloodredroses profile image
Bloodredroses in reply toKellyInTexas

G , I wonder does the Clinic in London PROFF Hughes is still head of ( though retired ) does all the same tests ? I live 30 minutes away 😂 . Thank you for putting into perspective and words what it is I need to do . ( on my backdoor no less . And no air flights ) my osteo arthritis is the trigger , but as not in pain from it all the time , should not be so fatigued. The secondary osteo arthritis sites , shoulders not primary sites of knees . Are painful all the time , The fatigue also . I had The honour of meeting Prof Hughes at a APS Book Launch . I can go to one of his team , it’s ridiculous I have not done it ( brain fog ) at least called up and asked which tests . You have helped to clarify what to ask for . Thank you 🙏🏻

Bloodredroses profile image
Bloodredroses in reply toKellyInTexas

HEAVY METALS DETOX .

Very interesting article .

Foods to include and Avoid .

healthline.com/health/heavy...

Bloodredroses profile image
Bloodredroses in reply toBloodredroses

Do any of lovelies on here know a natural sugar or honey/coconut sugar replacement to cook this yummy looking gluten free choc ( cocoa) banana bread ? Thank you 🙏🏻

rachlmansfield.com/delish-b...

MaryF profile image
MaryFAdministrator in reply toBloodredroses

For me as well as Hughes Syndrome/APS and Lupus, I had to really look into other things, one was gluten, it makes me pretty ill, tired, bloated and painful joints and sneezing, and also sorting out my Thyroid was key plus my B12 levels, a lot of us have a long journey to diagnosis. MaryF

Bloodredroses profile image
Bloodredroses

Yes true can take years . What is the thyroid test treatment? How did your sort it? Thnku

Pooky7 profile image
Pooky7

hi. I have been gluten free, egg free, no sugar, organic foods… for over 10 years now. Filtered or well water most of my life. Refused fluoride. See a naturalpathic dr. Did heavy metal detox safely with a combo of many things—mostly unda drops. I get hair analysis every 6 months. My naturalpathic dr watches my kidneys and liver via blood work. I also recently was diagnosed with limb girdle muscular dystrophy and walk 3-4 miles a day. My muscles don’t work like they used to, but I keep trying. My blood INR has been good. I don’t see a dr for my APS, as no one around. I really don’t have issues anymore:)

Bloodredroses profile image
Bloodredroses in reply toPooky7

Unda drops ?

Bloodredroses profile image
Bloodredroses

Thats great helpful info, thank you .

My last hurdle vegan chocolate . Negative bloods for APS but as EP years ago on 10 mg Rivaroxaban lowest dose , love to stop , but my Haematologist , known to Prof Hughes , she knows my blood type profile, does not feel to tell me to stop. I feel more awake in brain with thinner blood. ( My prehistoric Saxon thick blood I guess )

Yes I will find a good naturopathic Doctor also . In London will be.

Where do you send hair for analysis ?

What are unda drops ? Intriguing .

Thank you . 👋

Pooky7 profile image
Pooky7

UNDA drops are homeopathic. Different ones, for different organs and detoxing. I am in Minnesota. The naturalpathic office sends me an envelope for my hair analysis and it is mailed to a lab. The naturalpathic dr then interprets it for me. I also had all my mercury fillings removed years ago. I only use natural cleaners too

Bloodredroses profile image
Bloodredroses in reply toPooky7

Fabulous . Convenient .

Yes I got all fillings removed also . Helped fatigue . Also only baking soda to clean and hot water to wash dishes . If oily tiny drop of fairy. Shower hair naturals only . Clothes also. APS makes me fatigued , osteo arthritis in body ache . Need to improve that . Hard . Winter worse .

Pooky7 profile image
Pooky7 in reply toBloodredroses

The only medication I take is Warfarin. Only naturalpathic. No vaccines. I follow my naturalpathic dr. My neurologist has been impressed

Has anyone tried earthing for the blood? I have read a lot about it

Bloodredroses profile image
Bloodredroses in reply toPooky7

Earthing ? Roll around in soil? Walk in bare feet ? Hold A low power electric wire to earth ? Like to not , but nervous to stop covid annual vaccine , 2024 Winter , because clot history and disease APS . No covid as yet . No flu Bcuz flu shots . I like it.

Pooky7 profile image
Pooky7

hi. I have never had the flu. I had Covid. It was a cold. My INR actually was high. I lost my sense of taste and smell for about 1 1/2 weeks. I took melatonin to help that. I actually go in and help the elderly that have “Covid” and don’t get sick. Never had a shot. I am not afraid. My neurologist and his colleagues are writing a medical paper on how the Covid shot is linked to strokes. I know many people that have had strokes after the shot. Read. Ask questions. I have had at least 40 medical professionals open up to me on the dangers. I was in the medical profession before. Used to follow “ their” word. Now I follow my gut and research. I pray. A lot

Bloodredroses profile image
Bloodredroses in reply toPooky7

Prefer no vaccine, my clot history and clot danger of covid is the fear. How does Melantonin help with loss of smell?

Bloodredroses profile image
Bloodredroses in reply toBloodredroses

Britains oldest twins, ladies104, fit healthy , credit their health with a brandy and lemonade at night. That must be the missing key. 😆

Pooky7 profile image
Pooky7 in reply toBloodredroses

My grandmother believed this. Lived 98 years. All but last months independent at home

Bloodredroses profile image
Bloodredroses in reply toPooky7

How wonderful , my Mother who was doing OK with ageing factor , had her bottle of brandy for a nip . I include mine with cream - Baileys as less harsh on stomach . A large tot. Not great on the Cholesterol , great on the mind 😂

Pooky7 profile image
Pooky7 in reply toBloodredroses

Melatonin or nicotine do something to that receptor. Some tried it. It works

Bloodredroses profile image
Bloodredroses in reply toPooky7

Interesting , nicotine was an early suggestion for covid symptoms . Re prev reply . Maybe covid vaccines are less necessary if on bloodthinners if that is the fear . I don’t know if my Heamatologist would want to be pinned down to the question of covid vaccine or not for APS patients . 🤔 thinking 💭 🤔

Pooky7 profile image
Pooky7 in reply toBloodredroses

They may tell you “ off record”. Fear of loosing license 😳

Bloodredroses profile image
Bloodredroses

True . I have found ‘ no off record ‘ if I have read a fact in my treatment on google , They have confirmed it . ( already published ) . I have never asked, my Haematologist is quite eminent , has helped me so much with Bridgeing on Rivaroxaban With operations and procedures , during covid fear times . I don’t want to put them ‘in a position ‘ to ask . My dentist 70 , almost died with covid , 2030 long covid 2 years , beat it with rowing machine , bike and respiratory specialist . When I ask him , he has no hesitation for himself , as an elderly fit dentist , he masks and covid vaccine . I am so bored with it , I barely ever mention it , not to my medical saviours . I use both , modern medicine and natural organics , natural supplements . Gratitude and positivity humour .🙏🏻 😂 Thank you for this thread . It’s been great .

Pooky7 profile image
Pooky7 in reply toBloodredroses

God bless

Bloodredroses profile image
Bloodredroses

🙏🏻🙏🏻 you too and everyone on H U.

Not what you're looking for?

You may also like...

Trying to get a diagnosis

Hi, I am 19 and in May of this year suffered what’s believed to be a silent stroke. I then...

Is it common to need an increase in Coumadin ( Warfarin) during an APS " Flare?"

My family and I are still trying to figure this Syndrome out with regards to how it is affecting my...
KellyInTexas profile image
Administrator

Hoping for a diagnosis

Hi everyone, I'm hoping to get a diagnosis for my wife (F, 33). We have an appointment with our GP...
bpyoung999 profile image

My Story my road (shortened version) to diagnosis

As far back as I can remember from 18 onwards I think my first symptom was stomach pain In 1991...
TJSTICKYBLOOD profile image

My story from birth to now.

You could say I was a miracle when I was born, I was three months premature and weighed just 1lb...
xxkellywxx profile image

Moderation team

See all
KellyInTexas profile image
KellyInTexasAdministrator
HollyHeski profile image
HollyHeskiAdministrator
lupus-support1 profile image
lupus-support1Administrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.