Has anyone seen a functional Medicine doctor. They are a MD. They treat the problem instead of the symptom. They do it with diet & supplements. I learned about from a book called the “Broken Brain”” Mark Hyman. They have a great success rate.
Designer16
I think if you can find one that can work alongside your main stream Hughes Syndrome/APS consultant, that would be the best result, I have seen one to check what I am doing, and also one of the best nutritionists in the UK, again to check what I am doing. It all helped improve me. MaryF
That would be great if we had enough docs here in the US that already knew enough about Hughes but that is a crap- shoot, aka: throw of the dice
Thanks Mary
I conosulted with one of Dr. Hyman's colleagues, Dr. Paris Kharbat at Cleveland Clinic's Functional Medicine. After submitting the most comprehensive med and psych history I have ever completed, and after they did a detailed blood analysis, they concluded: 1, I had a candida overgrowth, and 2, I have high, but not technically "toxic" levels of heavy metals -- which makes sense as I grew up in a coal camp in Southern WV playing on slag dumps and surrounded by coal dust. I was treated for the candid overgrowth, put on pre and pro biotics , their "detox" diet and the tummy issues I had disappeared. I have not undergone their chelation protocol to expel the remaining toxic metals; I am 5 hour drive away from Cleveland and I can not find anyone local who has good reviews to do the venous chelation. Plus I had that knee replacement (also at Cleveland) last summer and plan to re-address this heavy metal thing later. (I did find that sweating is a great way to detox and a side effect of this past summer is that I've done a lot of that! M y next oral trial chelation will hopefully reveal I have sweated out most of the crap.)
I highly recommend functional med! After going on their detox diet (basically, a keto diet on steroids) ) I felt a good 10+ years younger with more energy, focus and peace. Note: for the first 10 days or so on the keto diet one has what has been named the "keto flu.") One's carbohydrate craving body does not want to go into ketosis so your stomach will growl and growl and the emotional half of your brain will crave potato chips, or an orange, but your rational brain just has to put the metaphorical foot down on the rest ot the body and say "No. We are going through with this. Evidence says we will all be healthier for it!" And the evidence is true. 10-14 days in the weight begins to drop, the growling stomach stops, the energy and focus levels begin to rise and your rational brain turns to the rest of the body and says "See. I told you so!"
Since completing the diet protocol I have returned to eating carbs, fruit and dessert. But not in the amounts I once ate. And now that I have been in the proper carb burning/ketosis balance I can really tell when I am out of balance. I don't fall asleep very quickly if I eat too many carbs. I suspect this "too many carbs" things also contributes to bodily stress and an over-active immune system. Which brings me to another result: what I call my "therapeutic symptom line" for my INR was once 3. Then I went gluten free and that symptom line dropped to 2.5. After that detox diet my symptom line has now dropped to 1.7. Hooray!
Enough said.
I tend to agree with you Gina as I don’t eat a lot of carbs and I really don’t have any symptoms... I am on lovenox so I don’t acknowledge my INR anymore, however before lovenox when I was on warfarin my INR could be in the low 2s and I never had symptoms.
I am seeing dr Hyman colleague in the Massachusetts Clinic. I couldn’t get into the Cleveland Clinic its a 6 mo wait. The Dr I am seeing worked w/ Hyman for 20yrs.
I already eat healthily but despite what I do nothing helps
Designer16
How far along are you in this process? For example, Have you gone on a patient specific diet?
I see Dr. LePine on October 1. I have done the comprehensive questioner & spoke to the nurse & physician assistant. I have Dr Wahls MS diet which made me worse probably because of all the Vit. K.
Did the Dr. you saw know anything about APS Syndrome? In general do you feel like it helped.
Designer16
My functional med doctor knew about autoimmunity in general. When she strongly urged me to boost my leafy green veggie intake, my home doctors were all supportive and said " warfarin doseage should be adjusted to nutritional needs, and not the other way round." Initially I did need to up my warfarin doseage ( INRs every week) but then I tried lowering doseage and found, as mentioned above, that my ' tells' were not showing up until my InR was lower than 1.7- which is pretty low for successful treatment. But that number seems to have worked for me this past year, Do remember that vitamin K is needed in your body, especially for bone health. Not to mention all those B vitamons in green leafies which are essential for so much!
London Doctors/Differing Opinions
Need advise on moving doctors
Doing the rounds of doctors again.
Canadian doctors specializing in APS
