This blog post is a follow-up to the previous article that I wrote entitled “Loss of Bone Density in Thalassemia: Part One.”
I want to begin by saying that this article will contain as much scientific proof as I can possibly find, along with my own educated hypothesis and opinions.
My advice should never replace the recommendations provided to you by your doctor. He or she has received a medical degree and I have not.
With that said, I will remind you that the thalassemia (thal) population is very small. Thal is considered a “rare disease” for a reason.
There has not been much research done on thalassemia and osteoporosis, primarily because so few patients have lived long enough to be studied.
Even though some of my opinions and findings are unpopular in the heavily prescription-based medical world, I’m still going to share them with you because I believe in them.
As you know from my last article, I haven’t been impressed with the answers I’ve been receiving from doctors.
Please read my last post to learn more about the adverse effects that osteoporosis drugs have had on research subjects, as well as myself.
Before explaining alternative treatments, let me give you some backstory:
Several months ago, I was sitting in a lounge chair at the hospital while receiving a transfusion.
I wanted to put the foot rest up on my chair, but the handle to pull the footrest up was stuck in place.
I pulled on the lever with as much force as I could… then something terrible happened.
I heard a rip, then a pop on the right side of my ribcage.
My nurse was watching the entire episode unfold.
She asked me, “are you alright?”
I was in shock.
That’s when I realized that my muscles were much stronger than my bones — at least in my ribcage.
“No,” I said. “I think I just broke my rib.”
“Yeah, that looked like it hurt.”
That was all that was said.
I went home that night and could hardly sleep (or breathe). I wondered if I should have gotten an x-ray.
Wouldn’t the nurse have mentioned an x-ray if she thought I needed it?
When I woke up I could hardly get out of bed.
I bought an ice pack and held it to my rib cage while sitting at my desk at work.
This went on for at least a week.
I was miserable.
The pain finally subsided after about 6 weeks.
This whole debacle made me hungry for answers.
I thought back to each of the doctors who told me I should be taking Forteo, even after I told them how sick it made me.
Was I being a whimp?
Should I be taking another type of bone drug and just put up with any side effects that may come?
No, maybe the answer was to just avoid all footrests on armchairs?
Sigh. The answers to these questions made me feel really sad.
Then I started digging through Google with more specific questions about alternative treatments for osteoporosis.
What I found was an interesting study that improved the bone density of thalassemia patients without the use of drugs.
In 2010, the Cooley’s Anemia Foundation (CAF) provided Dr. Ellen Fung, Ph.D., R.D. of Children’s Hospital and Research Center at Oakland, a 2-year $60,000 grant to study the effects of vibration therapy on thalassemia patients who have osteoporosis.
The results looked promising.
Subjects participated in the study for six months, using the device for 20 minutes a day, and showed an increased bone density of a few percentage points by the end of the study.
“I need to talk to this doctor,” I thought.
I found Dr. Fung’s email address online and sent her a note.
One or two days went by… silence.
OK, I’ll look into buying a machine on my own. That way I can test it and share my results with everyone on my blog.
I asked my nutritionist for advice on which machine to buy.
She told me that the really good vibration machines cost over ten thousand dollars.
OMG! Now what was I supposed to do?
I thought about the large sum of money that CAF gave to Dr. Fung for her research and became inspired to reach out to Gina Cioffi, Director of the Cooley’s Anemia Foundation, with my questions.
I told Gina about my idea to use funding to buy a vibration machine that CAF could keep in their office.
Perhaps all of the adult thals in the community could come to the office whenever possible to get their shake on?
Gina very kindly reached out to Dr. Fung asking for details on the vibration machine used in her study.
Dr. Fung immediately responded stating that she used a company that is no longer in business, but which now has a spinoff company that sells an FDA approved machine for osteoporosis for $1,995.
That price was DRAMATICALLY lower than the prices of machines I had been looking at.
Gina sent me Dr. Fung’s email responses and said that she didn’t think buying one for the office was the best idea.
I agreed — especially since this new price made it more possible for patients than I initially thought.
Gina reached out to the company to see if they could offer a discount to any patients interested in buying a machine.
I followed-up with Gina after a few days. Turns out, the company agreed to offer a discount to patients!
Unfortunately, Gina said it couldn’t go out to patients until the CAF board approved of the distribution of this information.
“That could take months,” I thought.
Time is my most valuable asset. So, being the impatient Sicilian I am, I called the company myself.
I spoke to a man named Patrick Foote from Marodyne about my situation.
I told him that I am the writer of a blog that serves thousands of people from around the world, most of whom have thalassemia.
I explained what thalassemia is and how we all seem to get osteoporosis at a certain age.
He already knew about thal and was very familiar with Dr. Fung’s research. I was super impressed with his knowledge.
This lead me to ask if Marydone would be so kind as to offer my audience with the same discount that was offered to Gina.
He very kindly said “yes,” but he also offered to send me the device to test out.
“Of course!” I replied.
So, I’ve been testing out their machine which they call “LivMD” (short for low-intensity vibration) for about 2.5 months now.
The device has an automatic countdown clock that starts at the 10 minute mark, which is the max amount someone should stay on the device at a given time.
I use LivMD in the morning when I wake up and again in the evening before bed.
After using the machine just one time, I noticed that the tension in my hips and back had dramatically reduced. I couldn’t believe it.
I turned to my boyfriend, Andrew, and said, “Can you try using that machine, because I can’t tell if I feel better because I want to feel better or because it’s actually working?”
Andrew is an avid runner and has a high stress job, so his back is always in knots. He used the machine for ten minutes, stepped off and said “Wow, it’s not just you. My back definitely feels less tense.”
Aside from the results found in Dr. Fung’s osteoporosis study, the LivMD website claims that the machine:
Restores motion to joints
Relieves aches and pains throughout the body
I absolutely believe it, because my body feels a lot less achy now than it did before using the LivMD machine.
If you’ve ever wanted to see what a vibration machine for osteoporosis looks like, check this out:
Hopefully that was entertaining. Lol.
According to the National Institute of Health, risk factors for osteoporosis in thalassemia patients include “the delay in sexual maturation, the presence of diabetes and hypothyroidism, parathyroid gland dysfunction, accelerated hematopoiesis with progressive marrow expansion, direct iron toxicity on osteoblasts, iron chelators, the deficiency of growth hormone or insulin growth factors.”
It basically sounds like everything is against us.
Add in the fact that the very blood that runs through our bodies has been irradiated and preserved with God knows what to make it last longer. Ugh.
Aside from risk factors that we can’t control, there are also dietary risk factors.
When a person is diagnosed with diabetes or a heart problem, what is the first thing their doctor asks? The answer: “What are you eating?”
Why is it that doctors don’t talk about diet to reverse osteoporosis? In my opinion, it’s because no one makes money when you change your diet (besides your grocery store).
The Indian Journal of Pediatrics published a study that observed 45,725 children exposed to high intake of fluoride in their drinking water since birth. The study proved that children who did not receive enough calcium while also drinking water ended up with bone problems, including osteoporosis.
Fluoride toxicity exaggerates the metabolic effects of calcium deficiency on bone.
Fluoride is in America’s drinking water (in most states), so we are exposed to it when we drink, cook, and bathe in it.
I bought myself a Stainless Steel Steam Distiller to remove the fluoride from my drinking water.
Here’s a cheaper Water Distiller.
In the book “The Gerson Therapy: The Amazing Nutritional Program for Cancer and Other Diseases,” Charlotte Gerson and Morton Walker state that regular filters remove much, but not all of the flouride found in water. Therefore, water should be distilled in order to remove all of the flouride salts found in it.
Read more about water purification systems on Gerson.org.
Heavy metals, like mercury, found in foods like fish could also be a risk factor. Mercury directly influences calcium homeostasis resulting from the suppression of bone cells.
Read this list to know which fish to avoid. I’ve basically stopped eating fish, except for maybe 5 times a year.
In a study done on postmenopausal rats with iron toxicity, Isomura, Fujie, Shibata, Inoue, Iizuka, Takebe, Takahashi, Nishihira, Izumi, Sakamoto (2004) discovered that “oxidative stress could be involved in the pathogenesis of metabolic bone diseases such as osteoporosis.”
So, what is oxidative stress?
According to Andrew Weil, M.D., “Oxidation” is the chemist’s term for the process of removing electrons from an atom or molecule. We obtain energy by burning fuel with oxygen – that is, by combining digested food with oxygen from the air we breathe. This is a controlled metabolic process that, unfortunately, also generates dangerous byproducts. These include free radical — electronically unstable atoms or molecules capable of stripping electrons from any other molecules they meet in an effort to achieve stability. In their wake they create even more unstable molecules that then attack their neighbors in domino-like chain reactions.” You can read more about it here.
In other words, oxidative stress causes inflammation (an immune response) which then causes disease.
What causes inflammation in the body? Cigarette smoking, poor air quality, pain relievers like Tylenol, poor food choices, stress, toxins absorbed through the skin.. the list goes on and on.
The body of someone who has thalassemia is toxic. We require daily medication, do not produce our own red blood cells, have compromised immune systems, and are overloaded in iron.
The list is very long and this is why we seem to get more illnesses as we get older — because the body becomes more and more toxic as we age.
We need to remember that the body will store toxins wherever it can in order to continue to function properly. This is why some people have iron stored in their heart, liver, skin cells… and bones!
Because of this, we need to reduce our exposure to toxins wherever possible.
Start to think about the toxins that you are exposing yourself to.
Stop smoking, drinking, cleaning with toxic chemicals, and using hand lotions that do not contain natural ingredients (i.e., use coconut oil).
Your skin is your largest organ and anything that you place on it will get absorbed directly into your bloodstream.
More About Food and Diet
According to Buclin, Cosma, Appenzeller, Jacquet, Decosterd, Biollaz, Burckhardt (2001) “Acidifying constituents such as animal proteins may negatively affect calcium metabolism and accelerate bone resorption, thus representing an aggravating factor for osteoporosis.”
I hear a lot of patients saying that they are afraid to eat spinach because it has too much iron, but then they’ll feed themselves a chicken breast with a side of mashed potatoes or a hamburger with fries.
This is insane.
One reason why it’s insane is because the iron found in animal proteins is called heme iron or highly absorbable iron.
The iron found in plants is called non-heme iron or less well absorbed iron.
Also — almost all animal proteins are highly acidic, meaning they will use the calcium stored in your bones to reduce the acidity produced in your body when eaten.
Have you ever looked at the ingredients found in antacids? TUMS lists their ingredients as: 500 mg calcium carbonate/tablet (equivalent to 200 mg of elementalcalcium).
Taking antacids is not a solution, because they reduce the amount of natural stomach acid produced by the body.
Stomach acid is what breaks down food into absorbable vitamins, minerals, and proteins.Stomach acid is good — you don’t want to get rid of it.
Food acid/indigestion is bad and can be avoided by not eating acidic foods!
Read this book to learn which foods are acidic and which are non-acidic (alkaline): The Acid-Alkaline Food Guide: A Quick Reference to Foods & Their Efffect on pH Levels
People with thalassemia absolutely need to reduce their intake of animal proteins, salts, processed, fried, and non-organic (carcinogenic) (http://www.bloomberg.com/news/articles/2015-03-20/who-classifies-monsanto-s-glyphosate-as-probably-carcinogenic-) foods because this will lead to less acid and oxidative stress in the body.
Remember, acidity = toxicity. Reducing toxicity means that you are slowing down the progression of disease.
I wrote a health guide about diet and acidity, which I give away for free to anyone who signs up to my newsletter. If you haven’t already done so, please sign up and read it.
There is so much that I could write about this topic. I invite you to reach out to me (firstname.lastname@example.org) if you have specific questions.
I would like to thank Marodyne for providing us with a discount to their LivMD machine and for allowing allowing me to test it out for a few months.
Now that I’ve been using it, I can’t imagine not owning one. I’ll be right there in line with you to get one.
I also want to thank the Cooley’s Anemia Foundation for doing their best to provide patients with the support and services they need.
Please share this article with a friend or loved one who might find this osteoporosis information useful.
To your health,
p.s., here’s the vibration machine’s website: marodyne.com/livmd
p.p.s., be sure to take calcium + vitamin D supplements!
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