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Surviving and Thriving with Chronic Illness

Thrombosis anyone? MTHFR results!

MUST SEE if you have an autoimmune or neurodegenerative condition. Our risk of thrombosis. Dr. Diana shares the results of her genetic tests from "23andme". Does she have the MTHFR genetic defect?
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Hi, thrombophlebitis for me.  Ijust skimmed my vascular surgeon’s report and I think that was my only diagnosis - awhile ago.  I looked up thrombosis and it seems to explain what I’d experienced - a ‘capsule’ in my arm vein.  I’m super suffocating exhausted and can’t watch the vid right now.  I hope I’m not super off base.  Just couldn’t help but mention in case it fits in, somehow, with your findings.

You are so funny! i enjoyed this so much. I could tell some stories of quacks who suckered me out of so much money, but I’m too embarrassed.

.Methylation has to do with more than MTHFR. For example: knowing my genome, I am +/+, +/- for CBS and have definitive sulfur issues so I cannot handle sulfur supplements. I have MtHFR +/-, +/- and this would normally call for me to be on high dose folate and methylcobalamin. But because I have COMT +/+, +/+ with no VDR present, I only need low dose folate and must trade in the methylcobalamin for the hydroxycobalamin. I do get sick of people saying: “you have MTHFR and let’s put you on a high dose folate.” And some of these doctors are giving folate out without the cobalamin which can be dangerous as well. I am working for “free” daily raising awareness.

I have Arterial/Vascular/Neuro Thoracic Outlet Syndrome and Factor v Leiden heterozygous with multiple Thrombosis regularly. Thanks for your video

My daughter has connective tissue disorder dont know which type.but is very ill at this time. the blood vessel to the brain is damaged and cant get anyone who knows what they are doing. if i can speak to you would be great as i feel time is what we dont have.I am from Ireland.

Angel, is your vascular TOS due to EDS? I have vascular (vein) & neurogenic TOS and dysautonomia & many symptoms of EDS including cervical & lumbar DDD, Fibro, CFS, etc. etc….still looking for answers and suspect EDS in my case. I had multiple thrombosis before and after TOS surgeries & nobody knew why this happened but I have no Factor V Leiden or any other abnormal blood clotting test results.

Hi Christina I have been dx with bilateral A/V/N TOS. I have DDD in C7/T1 and also C1 through to C5 as well. I have been told that my FVL is the cause of the clots but also that the compression of the subclavian area doesn’t help. I keep clotting even though I am on anti coagulants.  I also have arthritis in one of my disks. I wish you all the luck finding the cause for your clotting issues. Are you on anti coagulants?

Hi Angel, thanks for the reply…so sorry you have compression of veins & arteries & nerves from TOS…I had decompression surgery so stopped the clotting…they think that was the cause of the clotting anyway and have not clotted again since 2008 so don’t need anticoags anymore..just take daily baby aspirin & fish oil as they have not found a “blood clotting disorder”...I saw an expert in TOS in Denver CO…had to research and research till I found the best…my left arm & hand had swelled up turned purple and blue from the clot and was in severe pain for years prior to this…dr’s in my home state started procedures on me first but abandoned my care when I reclotted ...I was sent home to lose the use of my left arm and possibly my right one too….I then went to Denver CO to a surgeon who removed clots with lysis then did first rib resections to decompress the veins but by the time they did this my veins were so smashed they had to put stents in them to open them up so blood could flow thru because previous doctors had waited too long (not telling you this to scare you but just in case you have not discussed this with an expert want you to know how devastating this can be if not fixed right away)...when my surgeon got inside and saw everything going on with the compression he said there was NOTHING else that would have helped me..no amount of physical therapy or anything else…only decompression via rib resections would solve the problem…I don’t know where you live but if you have not seen an expert in TOS do not believe other dr’s until you have seen an expert…there are only a few in the entire country!...trust me I did the research…the doctor who did my surgeries is one who fixes all the “mess ups” that other surgeons do on patients! People fly in from all over the country to see him.  I had to be kind of sneaky about going there in order for my insurance to cover it…had to go thru the ER then get admitted since I had a purple arm and hand on left with DVT in both left and RT that was not too hard…because my insurance would not cover being admitted out of state unless it was via the ER and then the surgeon called the insurance and told them what had just happened to me in my home state when doctors abandoned me…it was a crazy ordeal but got through it all…please feel free to email me anytime if you want more information…would be happy to give you the surgeon’s contact info….looks like from what I have researched on EDS so far that sometimes surgery is necessary to fix an injury that is related…not sure what they do when a patient has clotting disorders but when I was admitted for future hysterectomy they just gave me lovonox right away after surgery to prevent clotting to be safe…well I am off to physical therapy this morning so gotta go…feel free to email me again anytime.

Thank you for your vids Dr. Diane. I’ve been pretty ill for most of my life. I’m pretty sure I have EDS, possible POTS and dysautonomia. I’m a fainter. I’m officially dxed hyper-mobility, FM/CFIDS, IBS, endometriosis, adrenal fatigue, occipital neuralgia, anxiety, depression, ridiculously high cholesterol levels, and who knows what all else… I’ve had multiple hospitalizations and work ups over the yrs. Some helpful, some not so much.  I’m in your corner of the world (practically in your back yard,) if you need a guinea pig please contact me. I think the studies that might apply to me, from what I’ve been able to gather, are full, but if someone drops out for whatever reason, or you start a new study, I’m handy. God bless and keep helping us, one brain cell at a time.

hello, saw the post about folate for MTHFR gene. how do Yoh take folate, I’ve read folic acid is not folate and could disrupt Your bodies ability to produce folate. also,how does one get tested for thAt gene and how do people know so much about what they can absorb etc. I can’t imagibe insurance lYing for these tests and if so how ddoes one request them?

For those of you that thought for sure you have MTHFR because of your symptoms or diagnostics. I ask that you look into getting tested for pernicious anemia.

thanks for the video and for reminding us that there are shameless, money grabbing doctors out there.
You’re hilarious Dr. Diana! I love the out-takes!!

I asked to be tested for this and it was negative but the activated protein c resistance was positive. I havent talked to my doctor about it yet but from what I have read I am probably more likely to get blood clots.

For MTHFR answers, see the website by Dr. Ben Lynch called mthfr.net

And I would strongly recommend you read it thoroughly before taking any folate.  Also, I suggest you get your genes tested at 23andme and then follow the instructions on Dr. Lynch’s site for getting the results loaded into some free software that gives you specific information based on the raw data.  I say this because if you have more than one of these mutations and you start taking folate (the activated—-bioavailable—-form of folic acid necessary for a whole host of repair and maintenance to your body) without knowing that information, like I did, you can cause symptoms that are seriously uncomfortable.  (i.e. migraines, etc.)

I had two mutations which makes it much more serious so I had to do some foundational work by taking a few nutrients that were at a low status for me and get my inflamed gut under control so that I’d be able to take the folate that is keeping me from having strokes, heart attacks, miscarriages, etc.  Dr. Lynch tells you how to do that.

Dr. Lynch’s site offers specific protocols to use while you are learning about what your personal needs are for folate and other nutrients which help folate do its work effectively in your body.  His site also tells you what to use if you take too much folate and cause issues like migraines, etc. 

Anyway, the inflammation inherent in TOS is also rampant in those of us with these mutations because we cannot do something called methylating in an effective manner.  It occurs to me that TOS may in fact be a result of these mutations that happens to come to our specific attention because these particular nerves/blood vessels are trapped between two bony structures which squeeze them and get our attention in a way you can’t ignore the spider veins, and easy bruising and other early nerve/cardiovascular symptoms connected with MTHFR gene mutations.  Also, sleep apnea has been correlated with the presence of TOS.  Strangely enough, they now believe that Sleep Apnea is related to issues with damage to your endothelial lining in your cardiovascular system…a symptom also correlated with MTHFR mutations.  I doubt these relationships are coincidental.  Not surprisingly, all of these conditions have improved with my folate use after a relatively short time period.

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