Patient Stories - Audrey Leavitt

My sweet friend Audrey made a video about what injecting vitamin C has done for her rotten case of hEDS. She has had a great turnaround in her health. Yay for Audrey!!!

I created a new category:

Patient Stories

If you have benefited from intramuscular shots of ascorbic acid, my readers would like to know. Wanna write something for my blog? Send it on over so I can publish it!

lessflexible at gmail dot com

This reminds me I have not checked my blog’s email in months. Oops.

EDSers do write to me and tell me they are trying intramuscular ascorbic acid shots. I tell them, “Good luck!”

I also get asked if I am keeping track of these people and how they are doing. Nope.

Why?

I’m not a medical person.

I’m also kinda busy, being no longer disabled and all. Let’s jump for joy over that!

Hey, my thighs are looking good!

I’ve been doing leg lifts with weights since I broke my foot last year. That is great exercise and very 1980s. I’m from last century. Did you know that Jane Fonda’s workout is on Amazon Prime? I borrowed some of her moves.

Leg lifts are wonderful for building core stability, which we all need more of. Pilates does not. The machine does the work. Lying are you back and barely moving is not exercise. Don’t crunch your neck or low back either, unless you want more spine pain.

Intramuscular shots of Vitamin C may only work as a treatment for patients who have the same deleterious gene I have, meaning the same molecular cause.

Don’t know what this gene is yet.

The good news is I have a very straightforward and clear case of autosomal dominant hEDS, 2017 criteria.

My face shape is very similar to many EDSers. That is important because genetic disorders tend to produce the same facial features. So it would seem I do have a genetic defect that is very commonly causing hEDS among us. But who knows. Note how Audrey and I look alike. I look more like EDSers than my non-EDS close relatives. So there may be a lot of us this could work for.

In any event, the more C that is available, the more collagen your body makes. I read that in PORTER, so it must be true. They neglected to provide a reference. I have learned a ton about collagen from fashion magazines. Skin care is big business.

So, injections of Vitamin C could possibly help many different connective tissue disorders, as it is so crucial for collagen formation. Last I heard there were about 50.

Maybe they could even be a beauty treatment. With all this C I inject, I don’t need Botox or a facelift, and I spent my entire childhood in the sun. I will rush out to get both as soon as needed.

Vitamin C degrades in heat and light so it’s not stable in a cream, even at a high price. I make my own, mixing powdered C with old school PONDS, as I am from last century. That’s only one step in my nightly, Korean-inspired beauté regimen, which involves maybe 10 layers of creams, oils and serums and work with two face rollers. And a Talika collagen stimulating light device I bought in Asia. I learned a lot from those magazines. It’s fun to take care of yourself. It’s also an antidote to all the self-hate that comes with pain and disability.

I cannot say enough good things about my Talika Light Duo. It’s a workhouse that has keep on a chugging for years now.

One night I dropped it — having Ehlers-Danlos it slipped out of my soft hands, as things do — and it broke into pieces.

I screamed.

I cried.

I cursed my wretched EDSness.

I ran to the iMac to book a flight to Hong Kong to buy another and began packing my bags.

In a few minutes, Mr. Pennington put it back together, and it has kept working just fine. He is my hero. And that device is f*cking awesome.

The shots are a bit painful and very scary.

That’s definitely a problem, especially if one wanted to treat an EDS child.

I still get a little palm sweat before I do one. I’ve done over 3,000. Just a guess. Shots everyday for 7+ years, sometimes twice per day like when I was in drug withdrawal. Or when I’ve had pneumonia, which used to be a lot, before I went on low dose naltrexone, which is an immune regulating drug.

Although, I would do those C shots if they hurt 10 times more and were inconvenient — which they are not! they just sting sometimes! not even always! — I do not enjoy being disabled. I do not want my old life of endless pain and fatigue back.

This treatment must be done with your doctor who has to prescribe the C and various accoutrements.

Diseases should be monitored by a medical doctor.

Do not accept internet medical care.

Go talk to your doctor!

The C shots plus exercise and plus getting all my symptoms well-managed with treatments that push my body in a healing direction was necessary for me to become undisabled.

Not just C shots.

Treatments that push the body in a healing direction?

What does that mean?

Well, we have digestive issues. What helps with that? Avoiding foods that irritate (for me that’s too much vegetable fiber, too much fat).

The very best treatment I found: Low Dose Naltrexone, which is an immune regulating, inflammation regulating drug that is probably the safest pharmaceutical out there.

Circulation, exercise and building core muscles to support digestive organs also helped so so so much!

If you treat GI symptoms by going on a proton pump inhibitor, there are risks: accelerating osteoporosis, malabsorption and possibly stomach cancer. Could there be a better choice?

EDS is hard to treat because it is so easy to aggravate other problems when you try to address one. Hello, we are not normal!

One must be cautious, judicious and and make the least destructive medical decision.

Antihistamines cause more brain fog and fatigue. I am extremely sensitive to anticholinergic drugs, so I avoid them as much as possible. They make me stupid, tired and have food cravings. Anticholinergic drugs seem to cause dementia, as they are so hard on the brain.

MAST cell activation (part of allergic response) is an inappropriate, overreaction of the immune system.

Low Dose Naltrexone helps regulate the immune system. So does ketamine. And Vitamin C. These do not stop inflammation or blunt healing responses, like NSAIDs do. I avoid all NSAIDs, another type of drug with too big a downside. I need to heal! Read more Inflammation Can Help or Harm.

But this section is about antihistamines, which doctors love to give us because they give us some relief and it is so hard to help us.

Going on long-term antihistamines will make your brain fog and low energy worse, and will do nothing to help your immune system function better. You can get a rebound of worse allergies when you go off them. That’s a problem.

Same can be said for joint fusions and surgical interventions.

The pain and trauma of surgery can make the pain feedback loop stronger and lead to more chronic pain. Also, what the surgeon is trying to fix may not even be the cause of the pain. Pain is complicated, especially in us.

Good physical therapy, stabilizing exercises, getting small supporting muscles to engage, light myofsacial release techniques, and prolotherapy worked for me, after injecting C daily. Yes, even for painful cervical cranial instability. I used to beg for a guillotine, it was so bad.

Now I get to enjoy my fully functioning musculoskeletal system, because I refused to let any surgeons “make it better.” I can move, carrying things, walk tons and take care of myself, since I have said no thanks to many many surgeries I have been offered since I was a kid. Which I declined mostly because surgery scares me.

Here’s a horror story.

Any human (even non-EDSers) having a lumbar spine surgery where the surgeon goes in through the abdomen can expect a big disruption in their digestive function, which may never be the same.

What is this mean for an EDSer? We already have GI problems. Could end up with an ostomy, which means more limitations and risk of infection plus less fun. Did the surgeon mention this? Probably not. They don’t understand how fragile we are, that we are the ones most likely to suffer all the bad consequences.

Don’t be afraid.

Be informed.

Ask questions of the doctors, of EDS patients, of non EDS patients. Read research, not blogs. Ignore idiots trying to sell you a supplement or expensive foods.

Victims of EDS are so sick and have so many extremely difficult symptoms that we are very susceptible to the placebo effect and also — there’s no better way to put it — being conned.

I have been there myself! AARRRRRHGHGHGHGHGHG!!!!!!!!

So, I don’t want to convince anyone of anything. Do what you think is best. Get informed. Learn about long-term effects of treatments. Think about your future.

Pay attention to your symptoms and your level of disability. Are you able to do more?

And . . . I just have to throw in . . . exercise and keeping BMI below obesity are some of the best things any human can do for health. Obesity causes a state of chronic inflammation. Elevated blood sugar damages fibrillin, an important part of connective tissue. We don’t need more of that, thanks.

Circulation heals. Tendons and ligaments have no direct blood supply so you must get nutrition there by getting your circulation up every! day! This is hard with the gyms closed due to Covid. Walk stairs, do jumping jacks, run in place, kettlebells, get a stationery bike.

Circulation relieves dysautonomia and POTS, in my experience. Get that blood up to your brains.

And now . . . on to Audrey.

So happy you are feeling so much better, Audrey! Yay!!!

Listening to your health history was cathartic.

It’s very difficult to put EDS into words. It is so much more than pain, fatigue, dislocations, MAST activation syndrome, all those labels.

It really does take that much time to explain what life is like for us. Your story could be mine.

Audrey, I hope you are not traumatized by retelling it. I get depressed if I write too much about my life of disability. Your story helped me process, so thanks!

Audrey is a lot younger than I am.

I think that’s why she bounced back so quickly from injecting ascorbic acid. I was near 40 years old when I started my daily shots. I had been disabled since the age of 14, with crushing fatigue and joint pain. To make it all worse, I had spent many years on opioids, which gave me enough relief not to resort to suicide, so that was good. But they have absolutely devastating health consequences. So that was another major, major health problem to recover from.

We make the best decisions we can.

Audrey tried intravenous C and also liposomal C.

They did not help.

I have never tried IV C. Many years ago, I was told that IV nutrition is poorly utilized by the body. I have not researched that myself (by reading the PubMed) so don’t know if that is still thought to be correct.

Liposomal C is the best absorbed oral form. I am curious about it but I would not go off my C shots to try it because the C shots work so well and I don’t want to go backwards. Good to know Audrey’s experience.

What is your story?

If you have benefited from intramuscular shots of ascorbic acid, my readers would like to know. If you want to write something for my blog send it on over.

lessflexible at gmail dot com