Sticky Blood-Hughes Syndrome Support

For all those who are curious about my Functional Med siuccess story:

check out this site: brokenbrain.com Next week starts a live docu series regarding the basic precept of you are what you eat, I know that nearly all of us on this site would like to know how in the h*** did I end up with this disease? The functional med approach may have the answer, along with a path toward supressing symptoms. I can attest that I have 10 times the energy level after consulting with one of Dr Hyman’s collegues in Cleveland, and my ever worsening GI problems just went away. Oh, And though I stubbornly cling to warfarin ( went off it once before to very bad effect,) I now remain symptom free even when my INR dips to 1.7! ( maybe it is time to try to stop?)

18 Replies
oldestnewest

That should be “ success” story. How embaressing! And how self-defeating when I wish to convey sharper mental skills by spectacularly mis-spelling a word in the title.

2 likes
Reply

It's wonderful news to hear you a feeling better I shall also be watching the said programme with interest. The spelling error made me smile I hadn't spotted it until you pointed it out.

Reply

So happy you are doing so much better. I have terrible GI issues and my dr. doesn’t seem to be helping them. I have ulcers Barrett’s esophagus colon polyps you name it I Have it. Also APS positive low titers. Take baby aspirin. Can APS cause GI problem?

Reply

I once had all of these, and then, THEN, by accident I discovered I was gluten sensitive. I gave up gluten and all the upper GI issues went away. And then, at age 45, I had more energy then I had at age 15. That dramatic change — by accident! — is what first atttracted me to alternative medicine. And as I researched why a gluten free diet had created such a difference I read that celiac tends to do its damage top down. So, the first GI symptoms (other metabolic symptoms often precede as it did with me — anemic at age 4) are in the stomach: esophogus issues, acid, ulcers. Then the damage begins to focus on the intestines. So for me, discovering I had celiac became my Occam’s Razor — that one thing has explained so much about my previous bad health.

Then — off to Cleveland Functional Med last year to make sure that I was treating my gut and my body prioperly. Blood tests, a specific diet and exercise based to mazimize the blood values which were a bit sub-par and now I feel better at age 62 then I did at age 42, 22, 12.

And to specifically addresss your query about connection between APS and gut issues:

I think that its the other way round. Gut issuers can cause autoimmune reactions due to a compromised gut allowing and random proteins leaking into your blood system.

Also, of course, since our sticky blood flows everywere in the body then symptoms are determined by exactly where blood clots. And yes, i have read — not often — on this site that some have had GI issues due to APS.

Reply

I tend to agree with you about gut issues causing auto-immune disease. I’ve had gut issues since I’m a child so they definitely came first. Thanks so much for replying I am gluten free a few years now and it’s not helped me so far. I have been tested for celiac disease and it was negative.

Reply

I too tested negative for celiac disease. But I became anemic at age 4. Iron pills, taking this foul tasting syrupy liquid iron for years, skin and bones thin and GI issues as a child so I had to keep a log and call my Mom to see every BM I had at home. Nothing worked. Being anemic and in a constant state of inflammation became my own personal normal All these symptoms were well documented. So, despite the negative GTT test (given 6 weeks after going gluten free) every doctor I had at the time looked at my now normal hemoglobin and hematocrit, and IGg and IGa #s urged me to stay off gluten and consider myselef celiac.

Since then, on those rare occasions when I accidently injest some gluten, I know within 30 minutes as I become nauseus followed by cramping, diarrhea and brain fog. Its as if my GI tract is clinching its fists, jumping up and down in rage and saying “No, NO, NO!!! We will NOT put up with this crap anymore. For years, YEARS we tried to tell the brain to stop throwing this S*** down here and NO, we are NOT going back to processing this poison!” The temper tantrums have worked. I’m very careful now.

Reply

Hi Nancy,

So you have been "Gluten free" and that has not helped with your problems? What do your Doctors do for your GI-issues?

I believe many of us feel better not eating Gluten or anyway not too much of it and also eat healty food and keep our weight. Like most people.

Kerstin

Reply

Going to watch with interest - thanks

Reply

Hi, don't be too quick to ditch your Warfarin. However I am with you with regard do what we eat. I have never looked back since giving up gluten and finding all the right drugs for myself, and of course making sure I regularly test myself to see what is going on with inflammation, D, B12 and Iron, plus of course my slow thyroid. I continue to eat a Mediterranean diet, plus supplements, minus gluten, with brazil nuts added in for the Selenium and make sure I exercise for a hour a day, even if it is 3 parts, if particularly tired. I trundle along on my LDN, and my NDT and my Aspirin. Keep well. MaryF

1 like
Reply

I would be prepared to trial giving up many of my drugs after becoming aware of many functional and natural medicine doctors reporting really good success with managing/reversing many conditions.

Warfarin is one if would love to stop but cling to more than many due to potential heart attack/stroke risk.

However I have been managing my winter ill health this year with high dose vitamin c, careful eating and bed rest when required. I have not had to visit a gp (although considered it quite a few times).

I have been educating myself on the benefits of vitamin c. Something I came across yesterday suggested that those with less than optimal levels of vitamin c were at greater risk of stroke or heart attack.

I don't know of anyway I could get my levels of vitamin c tested through the mainstream medical route. So if I decide to persue this I will be forced to look in other directions.

I think it is really sad that the NHS which is really struggling to stay afloat is not more prepared to look at nùtritional approaches to health.

Maybe they think patients would be unwilling to adopt changes, or maybe pharma companies have too big a hold on mainstream medical care and their medical model relies on selling ever more drugs.

One would hope that the good doctors would be up for helping their patients break the cycle of ill health and ever more drugs to manage ever more conditions.

But as many US doctors in particular have found it can harm your career financially to offer views that challenge the mainstream approach.

When most doctors start out with altruistic beliefs, it is concerning that some who may become aware that the medical model they are following may not be the best, sit tight and stay quiet.

For those patients who choose to look for alternatives, they are often scorned. But high dose vitamin c seems to have been useful for me this winter.

Maybe it's just luck or coincidence.

Reply

Dale Bredesen book, “ The End of Alz.” refers to a slew of tests, including Vitamin C levels, which patients should have but are rarely prescribed. BUT, Bredesen does list some private sources for testing which patients can -with cash- access themselves. Ill look back on that chapter, and if I find a soecific, I’ll let you know.

1 like
Reply

Thank you that would be good. Especially if there is a UK based resource. But anything could kick start a search.

Reply

Hi Gina,

Stop the Warfarin after so many years feeling ok on it ...........I would never take that risk myself I guess.

Kerstin in Stockholm

Reply

Very encouraging!

I'm having a functional medicine consult next Tuesday and am excited for the "whole body approach" to getting me well. To prepare, I've been reading two books by Dr Amy Myers (The Thyroid Connection and The Autoimmune Solution). Very enlightening stuff.

I have Lupus (SLE), Sjogrens, and hypothyroidism (that may or not be autoimmune related) and am now in menopause. Meds have helped but I would like to regain the drive, energy and motivation that I used to have as well as not be sick and fatigued all the time. I'm hoping to understand what is going on in my body and how what I ingest (food, meds, supplements, etc.) affects me.

Fingers crossed!

Reply

Are you a Star Trek fan? If so, you will understand the meaning of Kerplach! ( Klingon for “ success!)

Reply

😊

Reply

I’m using some of Amy Myers product they work

Reply

As always your posts are very interesting Gina, so glad that this is doing well by you and you are feeling in control of your own health, bravo!

Reply

You may also like...