I thought I should give as brief as possible a synopsis of the medical issues I’ve been dealing with for the last few years (in the case that you haven’t already been subjected to reading them). Around 5 years ago I was dealing with a lot of stress. More stress than I’ve ever been through or hope to go through again. My body had the great idea to react to this by fighting itself and attacking its own cells, specifically in my digestive tract. I dealt with the symptoms for about a year, but finally, and reluctantly, went to a GI doctor who diagnosed me with Ulcerative Colitis. Prior to this I never went to the doctor, nor was I a fan of Western medicine. This whole ordeal just reaffirmed my original thoughts.
The first few drugs they gave me; Imuran, Pentosa, etc. didn’t work. Prednisone made me feel like ass. It made me feel fatigued but still unable to sleep and suppressed my appetite (the opposite of what happens to most people). It also made me much more injury prone. I was then placed on a clinical trial for a biologic, Etrolizumab, which worked for a few months but it elevated my liver enzymes so they had to remove me from the trial.
After that I was placed on an assistance program for Humira. This is when everything went to shit. Humira does work for some people, Casey Williams is proof of that, but it damn near killed me.
Here’s what Humira does as well as some of the side effects:
https://www.humira.com/rheumatoid-arthritis/how-humira-works-video-transcript
“HUMIRA is a medication called a TNF blocker. It works by binding to TNF molecules and blocking them from attaching to and attacking healthy cells. In this way, HUMIRA helps reduce the damaging effects of excess TNF. Remember no treatment can stop your body's overproduction of TNF, but a medication like HUMIRA can help reduce its effects.
What should I watch for AFTER starting HUMIRA?
· Blood problems (decreased blood cells that help fight infections or stop bleeding). Symptoms include a fever that does not go away, bruising or bleeding very easily, or looking very pale.
· Heart failure (new or worsening). Symptoms include shortness of breath, swelling of your ankles or feet, and sudden weight gain.
· Immune reactions including a lupus-like syndrome. Symptoms include chest discomfort or pain that does not go away, shortness of breath, joint pain, or rash on your cheeks or arms that gets worse in the sun.
· Liver problems. Symptoms include feeling very tired, skin or eyes that look yellow, poor appetite or vomiting, and pain on the right side of your stomach (abdomen). These problems can lead to liver failure and death.
· Psoriasis (new or worsening). Symptoms include red scaly patches or raised bumps that are filled with pus.”
These aren’t all of the side effects of Humira, these are just the ones that I was lucky enough to suffer from.
I was on Humira for about a year. Even early on when I began taking it I started getting horrible swollen joints, swollen hands, feet, and it eventually caused edema and put me into heart failure (although the doctors refused to admit that the Humira caused these issues). The GI doctor never did blood work and kept assuring me that these symptoms were just worsening autoimmune issues. At one point we called to make an appointment due to my difficulty breathing (due to the fluid build up around my heart from being in heart failure) and he told me to go to my GP. Regardless of his opinion I refused to keep taking it. When I worked with a functional doctor and he requested blood work it showed that I had 22 things out of whack.
The GI doctor switched me to Entyvio (another biologic) which was given through infusions in the cancer center every month for about a year. All of the biologics helped my gut issues, but they also all had worse side effects than the original disease including joint pain that continued to worsen. I ended up having to go to a Cardiologist (who prescribed 2 meds, an Ace inhibitor and beta blocker) as well as a Rheumatologist who finally took me off of the biologics and prescribed Methotrexate (the chemo med that Clint Darden has taken) and Sulfasalazine. Eventually I switched to another Rheumatologist and was prescribed Plaquenil (which is used to treat lupus which is what my symptoms and blood work seem to show I now have as well) and Sulfasalazine. I went from never going to the doctor and never taking meds to being dependent on 4 meds. I even had to have a bone marrow biopsy at the request of the hematologist to rule out cancer. I was now far worse than when I just had UC.
On my own I’ve taken (and continue to take) Kratom, CBD oil, high dose Turmeric, Boswellia, NAC, Vit. B, C, D, Beta Carotene, Milk Thistle, Saw Palmetto, ZMA, Fish Oil, and the list goes on. None of it did much, if anything. If there’s a supplement recommended for reducing inflammation, I’ve taken it.
I consider myself pretty resourceful and started looking online for other options. I don’t want to live the rest of my life feeling like shit while taking meds that just mask my symptoms. I also, if possible, would still like to have at least one last day on the platform. I started researching stem cells and their amazing restorative abilities.
Here’s an informative and entertaining video from one of Joe Rogan’s podcasts where he speaks to Dr. Neil Reardon who performs stem cell therapy in Panama and Mel Gibson (who I admit is a little crazy).
MMA fighters, NFL players and numerous other athletes have been traveling outside of the country for years (primarily to Panama and Mexico) to received stem cell therapy. Up until recently I thought stem cells could only be administered via IV outside of the country, but if you research enough, you can find locations here in the US that will.
What are stem cells?
https://www.google.com/search?q=Dictionary
“an undifferentiated cell of a multicellular organism that is capable of giving rise to indefinitely more cells of the same type, and from which certain other kinds of cell arise by differentiation.”
That’s right, they can become any cell that’s needed and hone in on areas of inflammation.
Are stem cells considered unethical?
President Bush put a ban on all stem cell research in 2001. The thought was that the stem cells were using fetuses to retrieve the stem cells. Most embryonic stem cells are derived from embryos that develop from eggs that have been fertilized in vitro—in an in vitro fertilization clinic—and then donated for research purposes with informed consent of the donors. They are not derived from eggs fertilized in a woman's body. Embryonic stem cells are rarely used anymore, and if so it is most often for research purposes.
However, most stem cells for therapy are isolated from the body in different ways, depending on the tissue. Blood stem cells, for example, can be taken from a donor's bone marrow, from blood in the umbilical cord when a baby is born, or from a person's circulating blood.
The cells I’ll be receiving are umbilical cord cells that are donated from the mother after birth. Cord blood, like bone marrow and peripheral blood, is a rich source of stem cells for transplantation. The transplantation of blood-forming stem cells is an accepted treatment to restore the body’s ability to make blood and immune cells. Blood-forming or “hematopoietic” stem cells (HSCs) can develop into any of the three types of blood cells: red cells, white cells or platelets. The benefit of cord cells is that they won’t potentially carry whatever the disease is that is circulating in the bloodstream. They are also very unlikely to be rejected.
Why aren’t stem cells approved in the US?
They are approved for some purposes, such as orthopedic (they have been shown to regenerate cartilage), but the IV use is a gray area. I think the biggest issue is that the FDA doesn't like stem cell clinics potentially making false claims.
They are also approved for treating childhood cancer:
"Pediatric patients with blood cancers have diseased blood-forming cells. For some patients, a hematopoietic stem cell transplant is their best treatment option. ...Umbilical cord blood is a rich source of hematopoietic stem cells that can be used for transplantation in treating childhood cancer."
What does that tell you? It tells you that they work.
There are few other schools of thought on why they're not approved for other uses. The claim is that there haven’t been enough clinical trials here in the US to prove their safety. It’s more likely that the pharmaceutical companies are “persuading” the FDA not to approve their use. Pharmaceutical companies make their money off of treating illnesses, not potentially curing them. I know that sounds a little like a conspiracy theory, but I think it’s pretty accurate in this case.
The doctors don’t even know what I have at this point. I was diagnosed with UC and at one point nonspecific arthritis. The Hematologist says I have Lupus, but the Rheumatologist says that it’s too difficult to diagnose. Whatever I have stem cell therapy seems to be my best option to get rid of it. Stem cells have been said to essentially reset the immune system.
"Stem cell therapy is one of the most promising frontiers in lupus research today, especially for people whose lupus doesn’t respond to other treatments (called refractory lupus)."
https://www.lupus.org/news/major-lupus-stem-cell-study-receives-funding
"Major Lupus Stem Cell Study Receives Funding. The Lupus Foundation of America will provide $3.8 million in funding over the next five years to support the first-of-its-kind clinical trial in the United States to evaluate adult mesenchymal stem cells(MSC) as a treatment for lupus."
Here’s a link to a clinical trial in China that was relatively successful:
https://www.ncbi.nlm.nih.gov/pubmed/24661633?fbclid=IwAR180dIFBCgKUaoPtkJoRpZSyIAfzkP_3wgU1wmviXowlgI5SMf6aNTMzpY
My digestive issues have been correcter for years, but the extreme joint pain has destroyed my Powerlifting career as well as my ability to lift heavy at all. I’ve lost over 20 lbs, a significant amount of strength, and almost all of my motivation. I’m fatigued, I still have joint pain and I’m still growing increasingly frustrated. As always, I realize my situation could be much, much worse, but if there’s something, anything, I can do to improve my situation then I’m going to do it.
I had a consultation with the MD who will be performing the stem cell treatment a few weeks ago. He's having me come off of the main med I take to treat my joint pain, plaquenil (a potent immunosuppressant) with plans to get stem cell treatment on March 11th. The 1/2 life on plaquenil is 40 days, so I need to be off of it for 3 months to prevent the stem cells from being blocked to sites of inflammation. So, for the next 3 months, I’m going to have to deal with even more joint pain than I have been. My hope is that after the stem cell treatment I’ll be headed back to normal and, at the very least, med free. I also hope to be able to help provide advice to people in the same situation as me. To be honest, this is the last option I have left. It’s expensive, really expensive, and of course not covered by insurance. If you had the chance of healing, not being dependent on meds that just mask your symptoms, and potentially getting back to where you were before you got sick, wouldn’t you take it?
If there’s one thing I’ve learned from this is that if you have to deal with a potentially life threatening disease, make sure you have a doctor who’s at least attentive enough to do regular blood work.
They say if you don't have your health you don't have anything. I plan to get mine back.
If you read through all of this then I applaud you.
As always, thank you to my wife, Trinity, for helping me to get through this.
Live, Learn, Pass on
https://www.lls.org/sites/default/files/file_assets/cordbloodstemcelltransplantation.pdf
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