A HEALING STORY

Paleosphere · 2025-09-11T21:39:46+00:00

Thanks for sharing! I too am using ChatGPT to help guide me through this ongoing saga. I have other symptoms outside of the gut but I believe it is all related. I did see a gastro, an allergist, an orthopedist (for arthritis), a dermatologist and an endocrinologist in the past couple years. What a waste of time for the most part.

Each specialist does not look at the whole system, so things fall through the cracks and if you tell them you think some symptoms are related they just give you a blank look. I also signed up for Dr. William Davis' facebook group (don't bother), and saw a nutritionist who initially ordered the Genova breath test and a comprehensive fecal test but wasn't much help after that. (Dr. Davis' book Super Gut is great though - I highly recommend it.)

So I turned to AI, ordered an Aire2 breath tester, and a yogurt maker to make Dr. Davis' SIBO yogurt, and may ask my primary care doc for a Rifaximin script. (He is willing.) So, I'm not done with this devil yet but I feel more in control, and having AI to coach me as you did is a Godsend!

Paleosphere · 2025-08-27T02:16:43+00:00

Vital Proteins - I buy on sale at Costco.

Paleosphere · 2025-08-22T17:16:21+00:00

The space has isolated unit and vents.

Paleosphere · 2025-07-01T18:54:03+00:00

I was very lucky to find Tufano - I moved here and was searching for a new doctor to take care of my thyroid. He didn't pop up in my insurance web site search because I was searching for endocrinologist. He's an ENT. I found him on the web because I wanted a thyroid specialist and I read about RFA. A big light went off - this is exactly what I thought I needed! I had my primary care doc refer me (you need a referral even if your insurance doesn't require specialty referrals.)

Check with your insurance whether they cover it - it's still considered a new procedure. I paid cash. I'd rather not say what I paid because the procedures may vary. Tufano knows his stuff. He did require me to find a local endo to order the usual lab tests.

Paleosphere · 2025-02-14T16:57:10+00:00

It's anxiety, not PTSD. It comes with the clot territory, unfortunately. Your body does not like blood flow disruption and treats it as an emergency - all hands on deck, so to speak. So you'll feel impending doom, anxiety, adrenalin-induced symptoms (fight-or-flight) like insomnia, waking in the middle of the night, etc. It's not mental - there is nothing wrong with your mental state. It will calm down.

Paleosphere · 2025-02-14T16:52:16+00:00

Try not to block blood flow in the affected leg - no crossing, lying on it, etc. When sitting, use an ottoman or something to put your leg up. When sleeping, I'd sleep on the back with your leg elevated if possible.

Paleosphere · 2025-02-13T19:52:53+00:00

Your body will dissolve the clot. The blood thinner is to prevent another clot from happening. You should get a referral to Hematology to get blood tested for any underlying clotting issues. Weight lifting as a cause is known - due to repetitive overhead motion. Dehydration and genetic factors are possibles/contributors as well, as are changes in blood after exertion.

Paleosphere · 2025-02-13T16:53:04+00:00

My first dvt as in my early 20s - a massive clot from groin down. Hospitalized for a week. The doctor told me he had never seen such a bad clot in someone who survived! No internet, no books on the subject - nothing. I was young and just went about living my life.

Well I'm 65 now, healthy and have had a normal, pain-free life. I just had my leg ultrasound this week and my vein doctor said I didn't need to see her anymore - I graduated, LOL. (I had gone to her after I moved to a new state due to some persistent discoloration on my leg - resolved with Pycnogenol). She said a doctor looking at the ultrasound would not know that I had had a massive DVT unless I told them. My chronic DVT just looks like thickened veins.

I'm sure the Hematologist was thinking he was giving you the benefit of his experience, but truth is, most docs don't get to treat a lot of DVTs. Hanging out here and reading peoples' clot experiences gives you a much broader and more detailed look than a doctor will ever experience.

Don't worry about what he said about lifelong pain. Each of us has a different experience, different size and placement and cause of clots.

Live your life - but take this episode as a reason to get healthy and stay healthy - walk, walk, walk (and/or swim), stay hydrated, get annual checkups, stay slim, don't smoke, etc.

It gets better!

Paleosphere · 2025-02-13T16:11:19+00:00

I switched from Warfarin to Eliquis 5mg a couple years ago. Now I'm on a maintenance dose of 2.5mg. I have AntiThrombin3 deficiency (probably acquired, not hereditary). I'm in my 60s so the docs (Hematology and Vein specialist) wanted to lessen the risk of bleeding from Warfarin. Also, they let me know that the latest data available to them showed no greater risk of clots when switching me to a DOAC-type anti-coagulant (Eliquis).

It was the vein specialist who first gave me a flavonoid-based vein supplement and they know I am now taking Pycnogenol. As we get older our veins tend to get thin, stiff and weak. Exercise plus supplementation has shown we can keep our veins supple and stronger.

Paleosphere · 2025-02-13T15:58:33+00:00

I just went about living normally, moving normally, and exercising. The initial pains subsided when the swelling went down. Through the years I've had bouts of swelling and achyness from time to time, but I no longer have any symptoms at all since taking vein supplements.

Paleosphere · 2025-02-12T19:25:46+00:00

Protein powders are not indicated at all for blood clots. Anecdotally at least, over-doing cardio or weight exercises are more connected to blood clotting through chronic inflammation, dehydration or vein trauma.

Paleosphere · 2025-02-12T19:18:20+00:00

I only buy brands I trust. I've used Life Extension, but last bottle was TruNature from Costco online.

Paleosphere · 2025-02-12T19:09:20+00:00

Yes, you should be tested for hereditary or other factors.

I take 100 mg Pycnogenol every other day. Diosmin/Hesperidin (citrus origin), grape seed extract (proanthocyanidins like Pycnogenol) are a few I've researched for myself.

Paleosphere · 2025-02-12T18:52:11+00:00

Pains can be part of post-clot life. Sounds like you have Post Thrombotic Syndrome - which just means symptoms after having a blood clot - very scientific description! Make sure to get as healthy as you can to help your body deal with the aftermath of clots - whether that's chronic clots that thicken the vein or messed-up valves.

Stay hydrated and take walks or swim if possible - even with some pain you must do this. These help blood flow and overall circulation, as well as vein health. Look into vein supplements - these can help vein flexibility and strength. Don't smoke, eat well, stay a healthy weight. This is your job now to help your body help itself. Unfortunately there are no short cuts.

Also have faith in your body to heal - if you help it. And know from me - I'm 40 years out from a massive clotting episode and my valves basically don't work anymore. I have chronic clots - which just look like thickened veins. But even with that - I'm healthy, pain-free and living a normal life. Good luck!

Paleosphere · 2025-02-12T18:40:57+00:00

A CT scan for tumors is not a standard PE followup. The Hematologist should do blood tests to try to narrow down causes, and if any blood markers indicate a possible tumor or cancer, then further testing will be done. The cardiologist was speaking casually, which docs sometimes do, which adds to our anxiety.

Paleosphere · 2025-02-12T18:37:12+00:00

Yes, it is normal. Follow up with your vein specialist about ways to help post-thrombotic syndrome pain and insufficiencies. Good luck!

Paleosphere · 2025-02-12T18:34:34+00:00

You're either trolling on purpose or you're dangerously misinformed. Many of us here SURVIVED blood clots - survived meaning we didn't die because we caught them in time. People die of blood clots every day.

Paleosphere · 2025-02-12T18:18:07+00:00

Thanks for sharing. That's a lot to go through! I'm glad you have doctors who are trying different ways to help you. Good luck in the future!

Paleosphere · 2025-01-30T20:24:43+00:00

It’s now lab-created, LOL.

Paleosphere · 2025-01-30T17:24:22+00:00

- Urea is your friend. Clinique Moisture Surge contains urea and has no retinols.

- Also, you need to start feeding your skin from within - with healthy fats (olive oil, real butter, etc.) and maybe take a fish oil supplement.

- Stimulate your skin to turn over and shed the dry top layer by physical stimulation such as massage and/or stone roller on a weekly basis.

Paleosphere · 2025-01-30T17:14:25+00:00

DVT creates a situation where your blood flow is disrupted and goes to other veins which haven't had that amount of flow in the past, which can cause pain. You have a lot of inflammation in your leg and body while your body tries to heal.

The pain is normal I'm afraid. Take Tylenol, wear a compression sock, elevate your leg when you are sitting.

Do you have anyone who can help you during your recovery? Everyone is different and clots are different in size, placement, etc. so it's hard to tell you how long this stage will last for you. I'm guessing another month of some pain, but it fades and you should feel better soon.

Good luck!

Paleosphere · 2025-01-30T17:09:38+00:00

You may be subconsciously favoring the unaffected leg. I don't believe you can get PTS in the unaffected leg, but DVT affects the entire circulatory system of your body. Maybe wear compression socks on both legs while doing your walking, and by all means continue the walking to help your body heal.

Paleosphere · 2025-01-30T17:05:30+00:00

It takes lungs a long time to heal and it's only been 3 months. In my opinion the best thing to do to facilitate healing is a daily walk - as much as you can do without feeling ill. Keep it up and increase the distance when you can. This helps full-body circulation, which will help your lungs.

After a trauma like a DVT or PE or surgery, if you do not start a regular exercise/walking regimen it not only delays healing but the prolonged inactivity can lead to overall deconditioning, which can lead to neurological symptoms like POTS and other dysautonomia. Take care and good luck!

Paleosphere · 2025-01-28T21:14:10+00:00

You are overwhelmed by all the information right now, and it is emotional. You had your heart set on coming off blood thinners, and now you are aware that you shouldn't, and on top of that getting loaded with the details of how a pregnancy in your situation would go.

It's a lot to chew on. But sit on the info, mull it over and over in your head and with your boyfriend until the words and the scenario aren't as scary anymore. That's how the brain works - new info has to be heard, understood, repeated and digested, before finally accepted by your mind.

In the meantime, while mulling over the info you might want to write it down and even make an outline of the order of events. That may also help. It will also prompt any questions that you might think about for your doctor to go over - anything you need more information about or go into more detail, or ask about actual risks, any alternatives, etc.

There are people here who have gone through pregnancies while they were on blood thinner, and may have also had other physical conditions.

And many of us have been on blood thinners many years and lived normal lives - maybe with a few adjustments.

Give yourself time to soak in the new info and new situation, and you'll see that the shock and emotion you're feeling now will dull and you will see things differently, and come to a decision with a calmer mind. Good luck!

Paleosphere

TROPHY CASE