AIP Diet & Hughes Syndrome: There are... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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AIP Diet & Hughes Syndrome

sheshells
sheshells

There are lots of studies that link AIP, Keto, and Carnivore diets with improvements in auto-immune diseases/syndromes. However, in most of the more commonly known auto-immune conditions there are easily identifiable symptoms -- things like joint pain, digestive issues, etc. But for those of us with Hughes, the main tool for diagnosis is blood tests, and no other self-recognized symptoms that I'm aware of would be a "tip off" that one has the condition. A year ago, much to the surprise of my cardiologist and myself, 4 pulmonary embolisms were discovered by a radiologist on a CAT scan looking at my heart health (which, BTW, was excellent.) I took Xarelto for the standard 7 1/2 month protocol, and didn't find out about my Hughes until 2 months afterwards, when the doc ran the appropriate blood tests (and then re-ran them 12 weeks later for confirmation). I haven't resumed taking the Xarelto (or the Coumadin my hematologist preferred me taking), because I'm considering doing an extreme elimination diet, carnivore, and wondered if I had my blood tests re-run afterwards, if there would be any change in my results. Does anyone have any experience with trying this?

Thanks for reading! :o)

85 Replies
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As someone who could never keep a stable INR, can't comment on diet. I have what I'd describe as a fairly healthy diet but even trying the low VitK or steady intake of veg containing this INR still fluctuated wildly on Warfarin. I had follow up bloods for a few years after and although they were never shown to be negative for APS (I am triple +ve) they also fluctuated from time to time. I was on RIvaroxaban (Xarelto) for a while until it was no longer recommended for APS and am back on Clexane twice daily and although it's pain at times I feel better (and safer) on this regime.

I, personally, wouldn't go off prescribed blood thinners to try a diet that may or may not work after being diagnosed with APS.

sheshells
sheshells in reply to Ozchick

Thanks! Unfortunately, I've gotten very little useful information from my hematologist thus far. I'm currently looking for a better doctor. What does "triple +ve" mean? Also, when was "Xarelto no longer recommended for APS"? Do you have a link to information online that addresses that point? Once again, thanks very much for your kind reply.

Ozchick
Ozchick in reply to Ozchick

tctmd.com/news/rivaroxaban-... Here's one of many links as to why Xarelto is not recommended for APS. There are some great answers here for you to go on with and I understand it can be overwhelming when first diagnosed-but please find a doctor who REALLY understands this disease before making drastic changes to meds or lifestyle. As one of the others explained I test positive to all three markers for APS and always have-but you if you are positive to only one or two they can go negative from time to time-doesn't mean you are cured or don't have it.

sheshells
sheshells in reply to Ozchick

Thanks very much for following up and supplying the link. I have already downloaded the article and look forward to reading it with great interest. I really appreciate all the wonderful support on this forum!

HollyHeski
HollyHeskiAdministrator

I personally would not pursue a diet over anticoageration, as there is no cure for APS and the risk of blood clot for me would be too high.

I maintain a healthy diet, swaying towards Mediterranean diet, over the years I have become intolerant to various foods, my main one is lactose.

My APS is treated with daily clexane, clopidogrel and aspirin.

Please talk this through with your APS specialist.

sheshells
sheshells in reply to HollyHeski

Thanks for your reply! You stated, "...as there is no cure for APS..." What I'm wondering is if these antibodies could have developed at any time during my life (a position my current hematologist and various relevant websites espouse), what's to keep them from going away? Has anyone here ever seen a significant improvement in their blood tests over time?

The only thing that works for me is Warfarin for my APS. I have had a PE and also mini clots on the brain and for me there was no way I would trust managing something so serious with diet changes alone. However I can only speak for myself as we are all different. What makes this so hard to discuss sometimes is that what works for one person might not for another. My general health, energy etc, and keeping my INR stable, has all improved since I went Gluten and lactose Free. I have never eaten meat or a high protein diet since I was in my teens (I am now in my fifties) but my family have always eaten a lot of meat and protein and they also have auto immune and clotting. I would be interested to know how you get on. To be honest, I now look the healthiest out of the whole family. My mother has rheumatoid and takes some serious drugs to manage that. My brothers are on all kinds of tablets for heart, blood pressure, cholesterol, sleep apnea etc. Myself and my cousin just keep taking the warfarin and we seem to tick along okay.

Hope you get it all under control soon whatever way you tackle it.

Kaz

sheshells
sheshells in reply to veganworld

I appreciate your reply! It's interesting you stated that your "general health, energy, etc..." have all improved since going gluten and lactose free. That's good news!

I have been intermittent fasting daily, and adhering to a HFLC (high fat low carb) Paleo/Ketogenic diet for 2 1/2 yrs. Consequently, I consume very little fruit, gluten, grains/starches, added sugars, unhealthy vegetable oils, legumes, tubers, root vegetables, and alcohol. I eat lots of meat and seafood, and healthy fats (avocado, olive, macadamia and coconut oil. (The jury's still out on my tolerance of dairy.) Since eating this way, all my lipid panel numbers are now excellent, my inflammation markers are also all excellent, and my CAC score is .5 (coronary arterial calcium measurement). I'm 68 yrs old and went from a BMI range of "overweight " to "normal" within just the first few months of changing my diet.

I've always believed than humans are meant to be omnivores. However, after extensive reading and research, I'm seriously questioning that belief and considering going strictly carnivore. But it's always good to hear about other folks who eat differently with positive results. Thanks again for your thoughtful reply!

veganworld
veganworld in reply to sheshells

You are welcome. I hope things go well for you going forward. Very interesting for me also to hear how your test results have improved. Thank you for sharing and raising the subject.

Kaz

hihannula
hihannula in reply to veganworld

Hi there. With being a vegetarian, and on warfarin, is your INR consistently stable. I would love to be more vegetarian but afraid my doses of warfarin would be very high and I’d rather take as little of that drug as possible! What’s a daily diet for you so I can get an idea! Thank you. Holly

veganworld
veganworld in reply to hihannula

Hi

My INR was all over the place for years and then two years ago I developed a load of digestive issues. Turned out I had a polyp growing inside my gall bladder which I ended up having removed. I went onto a lactose free and gluten free diet while waiting for it to come out as my body couldn't digest a lot of foods and for the first time in twenty years or so my INR stabilised. It was unexpected.

I eat porridge or gluten free toast or fruit for breakfast with caffeine free tea. Caffeine was the thing my body protested to most. For such I eat salad or yoghurt or leftover veg from dinner. I still eat eggs so I sometimes have an omelette. I have a bread maker and make my own gluten free bread which tastes a lot better than the cardboard stuff they sell in the supermarket.

Dinner is where I make sure I get lots of veg, lentils and pulses. I no longer eat pasta but I do eat potatoes or rice. I get most of my meal ideas from the deliciously Ella cookbook as she went through a lot of digestive issues. I also use the Bosh cookbook. There are also goodies and treats in both of those books. I actually enjoy my diet more than before. I feel healthier and my husband also likes the food and eats like me more and more. For me cutting out the caffeine was just as important as the diet changes.

Hope that helps a little.

Kaz

Would be interesting if someone tried just cutting out the caffeine to see if thier INR stabilised.

Kaz

hihannula
hihannula in reply to veganworld

It helps a lot. Thank you. I am on a paleo diet, but slip sometimes and will have a cookie or donut my naughty hubby brings home. I will have to get 100% serious about no gluten or sugar.

veganworld
veganworld in reply to hihannula

It is hard my hubby is the same. If you get the two cookbooks there are plenty of treats in there so you can create your own. It didn't work out for me until I could do that.

Good luck

Kaz

hihannula
hihannula in reply to veganworld

Thanks Kaz!💕

As you may already know, the diets you mentioned are linked to lowering inflammation markers. There are blood markers which point to high inflammation. C reactive protein is the most prominent and is usually included in standard blood tests. Also, bad fasting glucose levels and unhealthy insulin levels also point to conditions that foster inflammation.

I agree that you should not make any major dietary changes without coordinating with a doctor who has experience with treating autoimmune disorders in general and APS specifically.

But, based on my experience, I would say that making simple dietary changes (and I don't know your current diet) can have definite benefits. But, as my Grandfather used to say, "You deal with the wolf at your throat before you even consider the wolf at the door." And the wolf at the your throats is the risk of getting more tiny blood clots. So, keep taking those meds.

Easy but effective dietary tweaks which lower inflammation would include eliminating super high glycemic foods such as colas (including "diet" colas,) fruit juice (substitute whole fruit.) In my case, which certainly echoes Dr. Hughes' observations, eliminating gluten had a profound effect on my APS. I used to be a strong triple positive. But since going on a gluten free diet in 2004 I am now a "triple negative," but I stay on a very low dose warfarin just in case that wolf is hiding somewhere and tries to make a pounce on my throat. And reducing high glycemic foods and nixing gluten should have little, if any, effect on INR levels.

And as far as Vitamin K leafy greens are concerned: Yes, an increase in intake should be coordinated with your doctor. In the past warfarin patients were told to avoid all leafy greens, Today, heightened understanding of the microbiome and the bio mechanisms of Vitamin Bs, has lead most recently- educated doctors to urge patients to take whatever warfarin levels accommodates a healthy diet. But making a major switch in vitamin K intake requires more frequent INR tests! Which usually requires coordination with your doctor.

One more caveat: A common "mistake" that new-to-gluten-free dieters make (besides not recognizing all the ingredients which contain gluten) is to eat a lot of gluten free starches and carbs. I am happy that there are now so many gluten-free substitutes for gluten filled pastas, breads, flours, etc. However, HOWEVER! -- most gluten free substitutes are made with white rice flour instead of wheat flour. And rice has a higher glycemic index then wheat

So --- if trying a gluten free diet, stay aware of what kinds of gluten free substitutions you make. (Also -- sorry to tell you this -- rice tends to be grown in swampy fields, which end up being sources or arsenic. YEACH! So -- another reason to not overdo it on rice!)

sheshells
sheshells in reply to GinaD

Gina, thanks for your weighty reply! As I mentioned in an earlier reply to "ozchick", I've gotten very little useful information from my hematologist since my Hughes Dx . Would you mind explaining what your "triple negative" comment means? (Please excuse my ignorance.)

I also replied to "veganworld" that, on a Paleo/Keto diet for 2 1/2 yrs, my lipid panel numbers are excellent and my CAC score is 0 .5 (coronary arterial calcium measurement). Additionally, my inflammation markers are all excellent, and specifically, my C-Reactive Protein is 2.0.

I'm curious about your statement, "...but I stay on a very low dose warfarin just in case..." Would you mind elaborating just a little? I would really appreciate it. Once again thanks so much for taking the time to reply.

GinaD
GinaD in reply to sheshells

Triple negative is the opposite of " triple positive" -meaning the3 blood tests used to diagnose APS : LA, lupus anticoagulent; beta glycoprotein ; and cardiolipin antibody.

Given my current triple negative, some hematologists want me off warfarin. But, given the trauma I went through before diagnosis with mini strokes, that idea frightens me. I have a tell: when the back of my head feels s numb in the morning, that means my blood id too thick. Before going gluten free, when my blood work for APS was positive, Ihad to have an INR of 3-5 on order to be symptom free. Now, .i'm fine with an INR as low as 1.7. I continue to take wrfarin because.... well. I'm scared of stopping.

Lure2
Lure2 in reply to sheshells

Hi,

What do you mean with "stay on a very low dose warfarin just in case...". Your Specialist should have put you on a theratpeutic range of INR (thickness of the blood as to Warfarin) to follow. We need a rather high INR level to be without clotting risques. I need an INR of 4.0. You can not decide for yourself what dose of Warfarin (INR states thickness of your blood) you should take.

Please read "Sticky Blood Explained" by Kay Thackray if you have been diagnosed with APS that is.

If we are diagnosed positive to APS and stay on Warfarin there is a great risque to stop Warfarin as APS means too thick blood and we never know when we will clot if we do not follow the stipulated dose or stop take Warfarin. We very seldom bleed from APS. Triple positive means that all 3 bloodsamples of antibodies are positive but you could have a diagnose of APS on only one or two antibodies positive twice with 12 weeks between the bloodtests at a lab. Usually the Specialist look at the antibodies and also at symptoms when diagnosing APS.

Hi

There is a doctor in USA who has it and has the diet online. Substantial improvement

Dr.Brooke Goldner. She does not charge. If you try it let us know. I have been considering.

Thanks BeachHaven for the suggestion of Dr. Goldner. I took a look at her website, goodbyelupus.com, and her three books on Amazon. (I think you'll find her assistance is not free.) She is a proponent of a plant-based diet, a position with which I'm not in accordance. (But she does claim some very good results in many people, and there are some positive reviews of her books on Amazon.) I encourage you to check out Dr. Georgia Ede's research on the immune system and our diets. I wish you well in your search for good health.

nmousdic
nmousdic in reply to sheshells

My wife tried Dr Goldner's method and unfortunately it did not help

MaryF
MaryFAdministrator

Hi, any new diets need to be really discussed with your main Hughes Syndrome/APS specialist plus any other specialists involved. I am not on Warfarin, but still my GP(s) and all specialist know exactly what I am doing and what I am taking. I have a Low G.I Mediterranean Diet, and am also gluten free, I do fine on this regime and don't want anything more extreme, but this would not necessarily be the right diet for everybody, and I am not on Warfarin.

Also to further add, you do need to stay on your anticoagulation, and if it is not suiting you, you must discuss with the doctor/specialist who prescribed it to you.

MaryF

sheshells
sheshells in reply to MaryF

Hi Mary, if you're not on Warfarin, are you on anything else -- Xarelto, etc.? If not, how have you "gotten away with" (so-to-speak) not being on a blood thinner? Have you had additional blood tests to see if your APS "markers" have gotten better after going gluten-free? I'm looking for someone who has a seen their APS actually improve over time and eliminate their need for a blood thinner. In other words, they accomplished turning off this genetic expression, using diet or discovering they were sensitive to certain food groups (e.g. gluten, grains, etc.) Hope to hear from you. Thanks!

MaryF
MaryFAdministrator in reply to sheshells

I had deep vein thrombosis more than once during pregnancy, and since then, going back decades, (no diagnosis at the time), I then went onto 2 x Aspirin a day, however if I ever have another incident I would have to be on something else, (anticoagulation wise), and would comply with that. I have dire problems with drug allergy, so I am on something called low dose naltrexone (LDN), which has helped me, but is not an anticoagulant. Being gluten free helps, and also keeping my levels of B12, D and Iron good, plus a very good diet and exercise regime, however if I had your recent clotting problems. I would be insisting on help with some anticoagulation, until something was found to suit me, in the past Fragmin injections helped. I have many diseases alongside Hughes Syndrome/APS> MaryF

KellyInTexas
KellyInTexasAdministrator

I would certainly continue the xeralto WHILE you figure out a gluten free diet , and increase a protein diet, etc.

You need that protection of a thinner while you try to naturally reduce the inflammatory agents ( wheats/ glut and, sugars, possible dairy) .

Then... draw your APS panel again. Compare the numbers to your baseline before your inflammatory elimination diet. If your antibodies are drastically lower , you “might”

be safer. ( I have clotted with DVT’s when I’ve been very low in titers.)

All this needs to be discussed with an APS specialist ahead of time, and I very much doubt you will get a blessing.

It is however, your body. Of course you can do what you feel is right. However, statistics with APS with two positive tests results and unprovoked clotting show you are at greater risk of clotting than a bleed.

There are some patients that out of the blue have strokes with no lead up symptoms. APS can present like this in some patients. It isn’t as often though, is my understand.

The reason I say this is is I have an a APS specialty rheumatologist who trialed me on Apixaban. ( high dose apixaban.) Her idea was to “dial it up or down” with each dose depending on APS symptoms.

She said I was a good candidate because I had APS symptoms when my “Equivolent INR” got low. Some people couldn’t tell, so this would not be good for them- and they would be at risk of a stroke.

I failed her trial and clotted in a weeks time- back to warfarin.

So don’t think just because you didn’t have symptoms you would be safe- you weren’t before!

My feeling is this is not safe for you. My feelings are not medical advice. You need to only listen to an APS specialist.

My APS experts all lean toward a Mediterranean diet- and add to it no tomatoes, no green bell peppers ( red is ok) no sprouts, and caution with eggs.

Probably limit gluten, and casein , and they mimic one another and the body gets easily confused. ( this is where non celiacs gluten intolerance comes into play as I understand it- but I have a limited understanding on this.)

So as you can see... it can really get complicated quickly! Off to an APS specialist for you! ( but I agree with you to get inflammatory triggers out of your diet- know what they are, and why- and then track the progress with proper data by your specialist.)

Lure2
Lure2 in reply to KellyInTexas

Hi Kelly,

Your APS Experts say no brusselsprouts, no tomatoes and caution with eggs......?

Can you tell why because I eat tomatoes every day and very often brusselssprouts when my INR is too high. Also eat one egg every day.

KellyInTexas
KellyInTexasAdministrator in reply to Lure2

Because APS is in the same family as Lupus. It’s a cousin.

Often times what flares a lupus patient will also flare an a APS patient, but this is a “ trial and see” each patient.

Brussels sprouts are the top offenders, and lupus patients are taken off Brussels sprouts. I actually do not know why.

I was just diagnosed with a form of lupus, so I need to find out. Maybe someone can tell us both.

Tomatoes aid in joint pain via gastro pathway.

Eggs tend to be common Auto immune allergy.

If you are fine, then you likely do not have an allergy.

Lure2
Lure2 in reply to KellyInTexas

Hi Kelly,

So you are diagnosed also with Lupus now. Sorry about that. Not primary APS like me anymore. I do not have any flares, so I will eat brusselssprouts, tomatoes and eggs like before.

This site is quite different now, but it is still called "Hughes Syndrome - APS Support". I had to have an extra look above.

KellyInTexas
KellyInTexasAdministrator in reply to Lure2

Kerstin, I’ve just re read what I wrote.

I also eat Brussels sprouts. I meant to write alfalfa sprouts! I just wrote the wrong word. I saw the correct thing in my mind but wrote the wrong word.

Sorry for that confusion.

I also found an article from a lupus organization written by a registered dietitian explaining why alfalfa sprouts are not to be eaten by lupus patients ( or actually APS patients according to my rheumatologist) due to inflammation of joints. I’ll try to link it here.

Lure2
Lure2 in reply to KellyInTexas

Kelly,

Yeah, I knew that alfaalfa sprouts are no no for us.

Thanks a lot.

dawnzy
dawnzy in reply to Lure2

hi Lure2 i also eat eggs and i love tomato,s i do stay away from the greens my INR drops with just 1 brussell sprout and boy do i miss them but they realy do affect me badly i have allergies to fish.milk porridge and orange. i found eating what i can and the fresher the better

Lure2
Lure2 in reply to dawnzy

Hi dawnzy,

I eat greens and Warfarin together. We need greens and vegetables. BUT - you have to eat the SAME amount every day. You adjust your Warfarin after what you eat!

If you have got a selftesting machine it will be easier for you to follow your INR to learn how your INR changes all the time. What therapeutic range are you put on dawnsy?

Lure2
Lure2 in reply to Lure2

As you say brusselsprouts will lower your INR in a very effective way and within 15 hours for me. If you will eat brusselsprouts every day you just have to eat a little more Warfarin that is all.

Hi Kelly. I've been off Xarelto since March of this year (2020). Explanation is in my last reply to MaryF. Don't think my clot(s) were unprovoked. Previous birth control pills & HRT usage for many years. I've been doing intermittent fasting and a HFLC diet for 2 1/2 yrs. Lipid panel numbers are great. Inflammation markers are also excellent. In the process now of completely quitting grains/gluten, added sugars and casein. My considering the Carnivore diet would initially include no eggs or dairy. Just meat. Then a reintroduction of both independently, watching for reactions. The problem is, to my knowledge, I've never had a problem with eggs or lactose. However, a casein intolerance was suspected when I was in my 20s.

Wow, are you ever correct that this is complicated! Gotta find a better doctor!!!

KellyInTexas
KellyInTexasAdministrator in reply to sheshells

Where are you located? Maybe we can help you out?

Hi Kelly, I'm in the process now of getting in to see a doctor at the Mayo Clinic location in Jacksonville, FL. Allegedly, they have docs in their Rheumatology Dept who are APS specialists. We'll see... **fingers crossed**

I've been on Coumadin for 20 years. I get blood work every month. If my INR is off I go in 2 weeks later. Your diet will affect it, summers I need to raise it because eat more veggies, but you learn tip.. cucumbers, simply taking the skins off takes care of that. Surgeries, and antibiotics can make it go wonky. I only eat chicken or turkey. I haven't eaten red meat or pork in 35 years. Hated the taste, stopped eating in college. I'd stick with the Coumadin. It's the safest drug for APS. I haven't had any side effects. I sadly had 3 miscarriages(98,99), In July 2000 I had preeclampsia, a stroke( a week after my son was born), I was dx with PPCM a week before the stroke. (pregnancy induced heart failure). But the Coumadin has been stable for 15 years. If you have any questions please ask away.

I hope you find the answers.

sheshells
sheshells in reply to 3boys

Hi 3boys! Your mention of antibiotics making things go wonky concerns me. I've been struggling with chronic UTIs for the last couple of years. I've ended up taking either Cipro or Macrobid multiple times. Hate taking either one, but it's been unavoidable. I'm taking d-Mannose preventively now for the last several months and so far haven't had a UTI. *fingers crossed* It's a single sugar but doesn't spike insulin because it's processed through the kidneys and excreted in urine.

I had pre-eclampsia on both of my pregnancies, but thankfully, no miscarriages.

Glad to hear you've had good results on Coumadin.

All the best!

KellyInTexas
KellyInTexasAdministrator in reply to sheshells

I struggle with uti’s also, as well as Interstitial bladder disease/ syndrome. ( also known as Sjögren’s bladder.)

I only have trouble with this issue during an autoimmune “flare.”

I also recently started taking d mannose.

Hi Kelly,

What exactly is an autoimmune FLARE? How do you know you're having one?

I had heard of Sjogren's Syndrome, but as far as I knew it usually causes dry eyes and mouth, so I'd never paid much attention to it. Then I did some Internet digging and got linked to some Mayo Clinic articles:

mayoclinic.org/diseases-con...

mayoclinic.org/diseases-con...

I now think that's what's going on with me -- Sjogren's with the resultant vaginal dryness and all its lovely side effects, which I've been mistaking for UTIs. And taking antibiotics which I don't want, or need possibly.

I had heard that people with auto-immune conditions often have more than one, so maybe in addition to my APS, I've got Sjogren's. That could explain all my UTI's over the last year or more. RATS!!

SheShells in Florida

KellyInTexas
KellyInTexasAdministrator in reply to sheshells

This sounds like such an easy question, and it’s one I had when I was first diagnosed in late 2016.

In my opinion, it’s a very difficult question to answer because it has a different answer for each patient. And then... is it APS flailing ? Is it Sjögren’s? Is it Lupus? Is it a low thyroid issue? ( for those of us with that diagnosis- or unsure- or a low , mild, or early lupus) ...

Or does one of those flair and set off the others?

What if I’m just coming down with something, as in I’m actually just getting a cold, flu, stomach bug or food poisoning?

1. All of the above could be the case! And at the same time... oh joy. But usually that’s not the case.

2. Usually I feel a flare coming because I can’t get warm. I run a low fever. I’m only happy in a hot bath. This goes on for days. I also might break out in mouth ulcers. My skin will not like to be touched. I have stomach cramp/ diarrhea. Back flank kidney pain. But none of these symptoms will progress to a full blown viral illness the way a flu or cold virus will. ( you know... 12-24 hours later you are actually, like for real sick?)

Nope- I just hang in a state of suspended animation. Maybe for a week.

Then my superficial veins start clotting . My inr drops. For two and a half years I got new DVT’s every 8-12 weeks- slowly my inr was raised as I clotted and clotted. We tried different anticoagulants . So far back to warfarin, but very high INR. And now Rituximab infusions at max intensity every 12 weeks.

This has really helped. I have not had a DVT, but I do still get the superficial clotting with flares.

This is May particular flare pattern. ( and recently a flare will include Sjögren’s bladder.)

nmousdic
nmousdic in reply to sheshells

My wife had the same issues with recurrence Urinary Tract infection. I got her on to a product you can buy online called Julva (you can look this up and she uses this daily) and I added Estradiol Vaginal Cream which she initially applied literally a pea sized amount twice a week and then once a week with great success. You will need your doctor to prescribe the Estradiol f you wish to ry it. We had tried Mannose but that did not work for her. If it works for you thats great and you may want to consider the above as additional revention. Good luck. We started our carnivore diet on Monday and will see how it goes!

KellyInTexas
KellyInTexasAdministrator in reply to 3boys

I’m so glad you are ok after the stroke- and so sorry for the rough time you had.

My mother suffered APS and had preeclampsia also. My twin sisters did survive!

It’s unusual you are so relatively stable on warfarin with regards to inr. Usually we need to be checked by way of a blood draw more often than that, as the antibodies play havoc with inr. You are very lucky in that way! ( take your lucky breaks where you can them, I say! 😊😉)

I suggested earlier you should read "Sticky Blood Explained" by Kay Thackray. She has this illness and it is a very good book about this illness.

I must ask you a couple of questions; how many antibodies (they usually should take 3) did you have positive when diagnosed together with the 4 PEs. Have they diagnosed you with other autoimmun illnesses or have relatives had some autoimmun illnesses? Do you have neurological symptoms and high bloodpressure?

You have now known of this APS-illness 1 year. It is really very good that you did not have to wait several years to be diagnosed and find a Specialist and to be anticoagulated. Many APS-sufferers here have had to wait a lot of years.

I remember myself that I was very suspisius especially to take Warfaring which I knew as a "rat poison" when the Doctors suggested that. Stupid of me - it has been my lifesaver.

I understand you want to be ok and perhaps not have to have anticoagulation. But if I were you, I would not do anything in a rush. Now you are protected from having more PEs.

We are different persons with different sorts of APS actually. It is a tricky illness but it is good if we try to learn as much as possible. Healthy food etc is always good of course and also exercise. We do need a Specialist who knows what he is doing as to autoimmun illnesses and especially APS.

sheshells
sheshells in reply to Lure2

My PEs were found incidentally on a CAT scan a year ago in Sept 2019. I only took Xarelto for 7 1/2 months. I finished the initial Xarelto protocol in March of this year. My genetic testing was not done until May of this year (because of COVID and not being able to get into see a Hematology specialist.) The hematologist didn’t put me back on any blood thinners because I had to be off them for a specified length of time prior to having the genetic testing performed. The first round of genetic tests were actually looking for whether or not I had inherited the usual suspects for PEs (from my Dad who died from chronic PEs). I didn’t inherit those genes. However, those first tests included the antibody tests which diagnose Hughes. When they were suspect, those tests were repeated 12 weeks later. That was just last month, August, and that's when I received my confirmation of the 3 positive results. So I have only known about the Hughes for around 1 month.

My glycoprotein panel was normal.

My cardiolipin antibodies were only slightly high.

My LA numbers were high but appear (at least to me) to be only mildly so.

And my current hematologist didn’t take the time to discuss the numbers with me. Consequently, I’m looking for a new hematologist, or maybe a rheumatologist instead. Seems like quite a few Hughes folks see one. I’m in North Central Florida and also looking into seeing a Functional/Integrative physician. From what I’ve read, they are more interested in taking a holistic approach to health, including diet and lifestyle, rather than just prescribing meds.

I haven’t been diagnosed with any other auto-immune illnesses, have no neurological symptoms, and have normal blood pressure, without the use of any meds. I’m 68 yrs old with a typical bp of 125/75.

KellyInTexas
KellyInTexasAdministrator in reply to sheshells

I see this now.

Interestingly I know another lady in Florida who has APS and is doing a keto diet. However.... she is a highly trained Masters RN - she taught nurses how to be Specialized cardiac surgical nurses.

She had a stroke and is now retired.

She actually used a phenomenal Hematologist in Panama City that she recommended to me- so I flew up and had a consult with him. Dr Frank Lu. He knew NEVER let that inr go under 4.5 for me.

He knew of Dr Hughes.

Sadly he died unexpectedly about 6 weeks after I saw him.

The last I chatted with her she was about to try out a new rheumatologist. I’ll ask her who and how it went. She was looking for a new hematologist, but I think her GP was handling it all for her in the interim.

You will need both a hematologist and a rheumatologist.

Sadly I think Fl is a little skimpy on specialists.

Hi Kelly, I'd be very grateful if you can come up with a doctor's name in Florida who treats APS patients. :o) Thanks! SheShells

KellyInTexas
KellyInTexasAdministrator in reply to sheshells

I asked the lady with APS in Florida who her dr was. It’s a rheumatologist in Panama City . It’s Dr Keneway ( Kenaway?) in Panama City. He owns his own private practice and has his own infusion center.

She and I both used dr Frank Lu the hematologist there before he suddenly passed away. He was excellent with APS.

Hi Kelly, thanks for the info. Unfortunately, Panama City is more than twice as far as Jacksonville, FL from where I live, but I'll keep the information handy, just in case I need it. BTW - what does he "infuse" at his infusion center? Anything to do with APS, or is it cancer related? Thanks again! :o)

KellyInTexas
KellyInTexasAdministrator in reply to sheshells

So he infuses for example Rituximab. ( I receive these infusions.)

Are you getting it for Hughes, or RA, or something else?

MaryF
MaryFAdministrator

A mixture of the Hughes Syndrome/APS Specialist and the Holistic, perhaps you mean Functional Medicine doctor would be good. Perhaps KellyInTexas knows of specialists near to where you are, best of luck. MaryF

sheshells
sheshells in reply to MaryF

I think I finally found a doc who actually specializes in APS at the Mayo Clinic in Rochester, NY -- Dr. Ali A. Duarte Garcia. If anybody knows of him, or has any info about him, please let me know. THANKS A BUNCH!

sheshells
sheshells in reply to MaryF

Turns out that the Mayo Clinic has a branch in northern Florida, just 2 1/2 hours from us. I just spoke with their scheduler. She started a chart on me. I'm getting ready to email my records to their Rheumatology Department. She said I can probably be seen in a couple of weeks. Fingers crossed that I have a good experience!

I did not get that you had known your diagnose APS for only 1 month. So you are not even on Aspirin?

Get a Specialist who works with autoimmun illnesses like SLE and APS every day! I live in Sweden so I can not suggest where you should find a Specialist only that you should have one.

This illness means too thick blood that has to be thinned. Perhaps they did not test for APS on your father with his PE so you can not be sure that he did not have Lupus Anticoagulant.

It is a tricky illness but good that you have got no neurological symptoms yet and not high bloodpressure as to heart/lung-issues. Hope you can get something to thin you blood somewhat. Perhaps 75 mg Aspirin at least. PEs ar very typicall for APS.

Graham Hughes/Munther A. Khamashta has written ; "Hughes Syndrome: Highways and Byways".

sheshells
sheshells in reply to Lure2

I think I finally found a doc who actually specializes in APS at the Mayo Clinic in Rochester, NY -- Dr. Ali A. Duarte Garcia. If anybody knows of him, or has any info about him, please let me know. THANKS A BUNCH!

KellyInTexas
KellyInTexasAdministrator in reply to sheshells

Exciting!

I have never heard of this doctor- keep us updated please!

sheshells
sheshells in reply to Lure2

I mentioned that my current hematologist hasn't been much help so far. I actually figured out myself what my blood tests Dx was. He didn't even tell me when I was there last time. I put myself on aspirin. Had some 82 mg lying around, so I'm taking 4/day till they run out, then switching to Ecotrin coated 325 mg., at least until I can get some more answers. Thanks so much for all your replies!

Lure2
Lure2 in reply to sheshells

Hi again,

I have learnt that 75-100 mg/day of Aspirin is enough. You should talk to a Doctor if you take more and ask him what he thinks. Aspirin is not anticoagulation.

Hope you get an appointment very soon. I think you will succeed and Good Luck.

sheshells
sheshells in reply to Lure2

Thanks for your reply. I'm going to see my Internist today and ask that he write me a script for some blood tests to establish current baselines for Hemaglobin A1C, C-Reaction Protein, DNA (DS) Antibody, ANA Serum, RBW, Serum Protein Electrophoresis, SED Rate, and current lipid panel and fasting insulin. It's been a year since I've had several of these run.

I did some reading on aspirin and you're right, it's not an anti-coagulant, but it does inhibit platelet aggregation, helping to prevent clots. I'll discuss the appropriate dosage today with the Internist. I tend to agree with you now that I'm overdoing it with the 350mg/day. I know it seems like I'm trying to "play doctor" here, but until I get to see an APS specialist, I'm taking whatever measures I can to try and prevent any new clots in the meantime.

Please, everybody, bear with me as I navigate this process, and thanks again to everyone who has taken the time to reply to my posts. You are all wonderful and supportive!

Lure2
Lure2 in reply to sheshells

It does not seem like you are "playing a doctor" . We are no doctors here only try to help eachother with our own symptoms and experiences. We learn so much from your question.

If you ask your Internist (is that a GP in England?) for all those bloodsamples above I am not sure he will do all of them. Usually Doctors want to decide for themselves what bloods that are required. Hope you find a Specialist soon!

sheshells
sheshells in reply to Lure2

Thanks for your supportive words (re my "play doctor" comment.)

I think we Americans alternately use GP (general practitioner) and Internist because so many of our GPs are Internists by specialty. Some of our GPs are Family doctors and see all ages of patients, but are not necessarily Internal Med docs.

I'm fortunate to have a GP/Internist who usually writes me any imaging or blood test scripts that I ask him for. We usually discuss my reasons and he has rarely disagreed with me that a particular test or ultrasound, etc. is unnecessary. On this particular occasion, he let me know that 2 of the tests I wanted to have run (the Fasting Insulin and Serum Protein Electropheresis) would not be covered by my insurance, but he still wrote them. And I'm going to pay for them myself.

He also encouraged me to limit my aspirin intake to the 81mg/day dose. However, I remember my hematologist saying several months ago that 81mg was probably not going to be enough, and that I would need to take the 325mg tablet instead. For now though, I'm going to stick with the 81mg until I get to see another specialist.

My hubby and I went grocery shopping this morning and bought a TON of beef and we're going to both start today eating a meat only diet -- for the next 30 days. We've been gradually transitioning from a mostly Keto (HFLC) diet over to the Carnivore way of eating for the last couple of weeks. If we feel good at the end of the 30 days, we may try introducing eggs and dairy. We don't think either of us has any sensitivities to either, but we'll see.

I'll keep posting as things progress!

sheshells
sheshells in reply to Lure2

Just read Dr. Hughes' book in a few hours, taking notes furiously the entire time. Learned so much! Thanks for pointing me in that direction!!! I now recognize other symptoms that I hadn't previously attributed to APS. SheShells :o)

HollyHeski
HollyHeskiAdministrator

Whilst you are taking aspirin please ensure that you are not taking on an empty stomach. Take aspirin with a full glass of water with meals or after meals to prevent stomach upset.

Hope you get an appoitment soon.

sheshells
sheshells in reply to HollyHeski

Thanks, Holly. I never take any vitamins, minerals, med, etc. on an empty stomach, unless specifically directed to, but I really appreciate your looking out for me! Such a great bunch of folks on this forum!!

Hi

My wife has APS. We were both vegans and now heading towards Carnivore diet. We both feel so much better on avoiding Carbohydrates, processed foods Nightshades etc. The doctors at Paleomedicina.com claim that going on a strict carnivore diet with fat to protein ratio of 2:1 heals the Leaky gut and will solve or drastically improve most autoimmune conditions. We have done the leaky gut test through this organization and my wife does have a leaky gut. Anyway we plan to start a strict carnivore diet Monday. Would be interested too hear how you do? gluten and pulses like lentils and beans and nightshades certainly rigger arthritis in my wife case

Good luck

sheshells
sheshells in reply to nmousdic

So excited to hear about someone else with APS giving carnivore a try. How long has your wife been diagnosed with APS? What were her symptoms? Miscarriages? Blood clots? PEs? Did she take birth control pills and or Hormone Replacement Therapy prior to her diagnosis? I'm trying to find another woman where a physician thinks hormones might have been a catalyst for her APS. Does your wife take any anti-coagulants? I apologize for all the personal questions, but we're anonymous here on the forum, so I hope you'll indulge me.

I have read multiple books by Carnivore authors, medical abstracts, studies, etc. that promote the Carnivore diet as being beneficial for folks with auto-immune conditions. I've also read countless stories from auto-immune sufferers who drastically reduced or even eliminated their symptoms after going Carnivore (or Keto).

My biggest concern is that with most other auto-immune conditions, there are external symptoms like skin reactions, or internal symptoms like digestive issues or joint pain, that can be detected by the individual. In the case of APS, we can't tell if we have blood clots or PEs until they cause a potentially life-threatening problem. Leading to the question, how would a person with APS know if the carnivore diet is making a difference? Repeat blood tests? Seeing positives go to negatives? And would a reduction in APS markers equal lowering the probability of future clots?

Earlier in this thread, GinaD reported she, "used to be a strong triple positive. But since going on a gluten free diet in 2004 I am now a "triple negative..." That leads me to believe that by significantly lowering (maybe nearly eliminating) inflammation in the body, as much as diet can do that, one might be able to mitigate the probability of recurring blood clots. I'm sure you've already done the research (conversion from vegan to carnivore being the outcome) and know that eliminating gluten, grains, sugar, veggie oils, etc. has a dramatically positive effect on reducing inflammation.

Hope to hear back from you!

nmousdic
nmousdic in reply to sheshells

I diagnosed her in 1986. She had intrauterine death of our first baby, had only one small thrombosis and been on Wafarin since at least 1997. Gets migraines if off Wafarin and did have arthritis.

We have 2 children now healthy adults. When she went off gluten her arthritis cleared. She thrombocytopenia too unfortunately big controlled with Promacta.

One has to look at nutrition sleep excercise and stress management in a holistic manner. Dr Kroger out of Duke has found a bacteria in the gut that our body reacted to and hence leaky gut a biggy I believe.

Hopefully carnivore diet will sort this out. We tried vegan diet for 5 years it helped but we are better off on a keto diet.

Lure2
Lure2 in reply to nmousdic

Hi, So you are yourself a Doctor and diagnosed your wife? You put her on Warfarin and I wonder what therapeutic level you put her on? Has she been off Warfarin for some period of time?

You say she gets migraine when off Wafarin. Do you perhaps mean if the INR is too low as we should never stop anticoagulation as you know?

The most important thing with APS is that we are anticoagulated as we have too thick blood. Diets etc are important and make us feel better like exercise etc, but the vital thing is our blood that will clot from APS as you certainly know.

nmousdic
nmousdic in reply to Lure2

I strongly believe in leaky gut. Dr Kriegel out of Duke university has identified a gut bacteria called Roseburia Intestinalis although part of the normal flora of our bowels actually triggers the antibodies that are cause of APS. Beta 2 glycoprotein a protein made in the liver which is the real culprit in this condition Comes in 2 forms. Circular and closed, but when open has a shape of a fishing hook, the one end attaches to bacteria and the other end to phospholipids found in the membrane of cells like the lining of ones arteries, platelets etc which then are attacked by the antibodies ones body develops. Ones body is trying to get rid of the bacteria and in the process attacks ones own tissues. Exactly how it predisposes to blot clits has not been figured out. My wife’s blood tested positive for Zonulin an antibody that is formed that causes leaky gut Her LPS ( lipoprotein Saccharide) which Dr Steven Gundry calls Little Pieces of Shit is also positive and this is a protein that bacteria have in their cell walls. Putting all this together would strongly suggest to me that either right genetics one may have inherited one develops leaky gut from a variety of foods particularly gluten amongst others bacteria cross into the circulation ones body produces antibodies to the bacteria and these antibodies also attack beta2 glycoproteins causing this autoimmune phenomenon. I believe Dr Kriegel is trying to develop a vaccine But I think solving ones leaky gut is the way to go. The problem is going carnivore to do so is not easy and practical but we plan to give it a go. The above is my explanation from all the reading I have done but does not mean it’s definitely the cause for this frustrating condition. I wish everyone good luck!!!!

sheshells
sheshells in reply to nmousdic

Thanks so much for this post! I have done a great deal of reading about and investigating "Leaky Gut" as well and am convinced that leaky gut, inflammation and insulin resistance are at the core of most of our chronic diseases including auto-immune ones. How was your wife tested for leaky gut? From what I'm seeing online, it appears to be a combination of blood tests from a formal clinical lab, and some self-tests one can perform at home.

I agree, going Carnivore isn't easy, but my husband and I have been easing into it over the last couple of weeks. Already totally gave up gluten, grains, nuts, seeds and veggies/fruits. Now we're working on quitting dairy and eggs. Some carnivores eat anything that comes from animals (including honey, which Dr. Paul Saladino has recently been experimenting with, with promising results for night-time wakefulness.) Let's don't give up! I hope to stay in touch with you here on the forum, for support and to continue sharing information.

After 2 1/2 years of mostly Keto eating (HFLC), my inflammation markers and lipid panels are excellent already, so I'll be curious to see if they get even better on carnivore.

After a period of time eating carnivore, how will we test to discover if there's been any measurable improvement in our APS?

Your post pointed me towards Dr. Duke's research. Thank you again for that!

Looking forward to hearing from you. *SheShells*

nmousdic
nmousdic in reply to sheshells

Let me know how you do on Carnivore. Look up Paleomedicina.com

sheshells
sheshells in reply to nmousdic

Thanks, I'll take a look at Paleomedicina. BTW, I would be interested in knowing how your wife was tested for leaky gut.

sheshells
sheshells in reply to nmousdic

How will we know if eating Carnivore improves our APS, since blood clots are our primary "symptom"?

Through paleomedicina. They sent out a bottle and the medicine one takes and you send some urine back. They explain it to you once you order the test! Look up Szofia Clemens from paleomedicina on youtube and listen to her lecture on leaky gut and she explains further there

sheshells
sheshells in reply to nmousdic

Thanks very much. I will watch it.

Retesting your blood after 3 months of extreme elimination should show a decrease in the titers of your antibodies

sheshells
sheshells in reply to nmousdic

And does a decrease in antibody titers actually equate to a decrease in the probability of forming clots?

Lure2
Lure2 in reply to sheshells

Now you are asking questions that not even the Specialists know. This illness is not fully known. This is a tricky illness not known more than around 35 years. Kardiolipinantibodies and Beta-2-Glycoprotein 1 can be found in APS and also SLE. After a myocardial infarction these antibodies are higher even for those people without a Rheumatological illness.

I think you should try to find a very good Specialist to ask these questions to, as I doubt that we here do have the knowledge to answer your questions as we are not medically trained and no Doctors. What we know is that our sticky blood must be anticoagulated.

It is said that higher titres will give an increased risque for clots and (micro)embolies etc.

sheshells
sheshells in reply to Lure2

Seems like it would follow that if higher titers cause an increased risk, then lower, or even negative, titers would cause a decreased risk. Just wondering...

Lure2
Lure2 in reply to sheshells

That what they say. Probably correct but you have Primary APS and APS with other autoimmun illnesses like SLE (Lupus). It must be a very difficult illness to diagnose and treat sometimes.

Lure2
Lure2 in reply to Lure2

I think you told us that your Beta-2-Glycoprotein was negative. If that is a fact you are not triplepositive and they also say that triple-positivity means an increased risk for clots etc. I am primary APS (so far), triplepositive with persistently high titres. I am 76.

sheshells
sheshells in reply to Lure2

I don't have any other autoimmune illnesses that I know of. I tested Negative for Lupus a year ago, and again two weeks ago. I also think my 25+ years of birth control pills and hormone replacement therapy could have been the trigger which lead to my APS. My hope is that with the elimination of the hormone variable, and going on the Carnivore diet (which is basically an elimination diet of any foods which can lead to autoimmune reactions) I can reverse my titers from positive to negative, thereby removing APS as a cause of clots.

nmousdic
nmousdic in reply to sheshells

probably

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