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A Injured Stem Cell Patient’s Story

A Injured Stem Cell Patient’s Story

I previously posted about a west coast stem clinic which had injured several dozen patients with its autologous based stem cell product. Here is a link to the prior post:
http://rickjaffeesq.com/2019/01/13/what-should-happen-if-a-stem-cell-clinic-harms-many-patients-revised/

Here is the story on one of the patients, written in her own words, with some deletions and redactions to de-identify the clinic.

The clinic told me I was an excellent candidate for their Lyme SVF stem cell treatment. They promised this treatment would boost my immune system to help my body fight off the infections and heal the damage from the infections. The thought of going somewhere and finally getting taken care of after 7 years of struggling sounded heavenly, but this place was anything but.

Before I signed up, I gave them all of my labs, genetic mutations, scans, you name it, they had it. I was still told I was “perfect for this treatment.” I was told there were “no risks” and it was an “85% success rate.” The only risk would be I might not notice any positive changes.

With this hope I scrambled to come up with the fee [in excess of 20,000]. I refinanced my home and gave them the last bit of money we had to invest into my health. It was scary, but I was reassured this would be what my body needed to heal from all of the neuro damage Lyme had caused. I was promised by several staff members and the doctors that I would heal from all of my damage. I have vision loss, hearing loss, loss of taste and smell, and neuropathy all over, just to name a few.

When I arrived my first day, I was greeted by friendly staff, but the person I expected to be introduced to, I never actually met, which was odd since that person was the face of the clinic and it was my impression that it was the person who designed the treatment plan for the patients.

They never ran any labs for me, just a body scan which I was told later that wasn’t as accurate as they made it out to be when I was there. I did ok with most of the IVs, but I did have a really bad reaction to two of the them. I did notice a bit of an improvement from the detoxing and felt hopeful. I woke up every night after the IVs gasping for air and being in a hotel alone like that was terrifying. I had never experienced that before and believed it was a good thing.

The day of my stems the procedure went ok, but I was bruised up pretty bad and ended up with a dent on both sides of my hips that are still there two years later. The night after the procedure I noticed my tinnitus got louder and everything sounded like I was in a fish tank. I was hoping this was a good sign of healing.

I went home and was told not to take any supplements, do not detox, don’t do any other treatments, and “just let the stems do the work!” This sounded really great after being on so many treatments and supplements for so many years. I was so hopeful!!!

I noticed a lot of ups and downs. Weird blood pressure dips, constant tingling all over my body and for the first time I was having a hard time sleeping. I took the tingling to be the stems working. I continued to believe I was healing.

Five months after stems, I developed mast cell activation syndrome after trying to work out. I took one small sip of white wine and five minutes later started having an anaphylactic reaction. I had never even heard of it before or had any allergies to foods or medications. I was so scared to be allergic to all foods, my environment, and anything I put on my skin.

I saw a local allergist first who was so worried for me and had never seen someone so overreactive. She was really angry and told me to contact the FDA. They wouldn’t explain what they gave me or the procedure. She didn’t know what to do for me so I was left to figure it out on my own. I researched it and found a mast cell specialist who put me on a mast cell stabilizer, Zantac and Claritin around the clock. It didn’t make all of my symptoms go away, but it made me not die!! I reached out to the clinic and they told me this was “normal and part of neuro healing.” I had a hard time believing this was normal, but stayed hopeful and waited for this to pass. They agreed antihistamines and a mast cell stabilizer were necessary. I was told there was no problem with adding these meds.

Months passed and I continued to get worse. I could not sleep or eat for two months straight. I don’t even know how I made it through it. I was so desperate and thought I was dying. The clinic doctors called it “neuro healing” for a long time. They said MCAS was a normal, temporary part of healing and I was to remain calm and hopeful. I was told to wait a year to 18 months for the neuro healing to be complete.

Somehow, I managed to change my meds and calm it down, but with every flare, my body would never be the same. It was even more confused as the month before. During this time, I started hearing the stem cell clinic changing its tune. Now genetics mattered, mast cell was not a good thing and we should never be on any antihistamines or mast cell stabilizers or it could make the stems continue to push out mast cells. They blamed all of my issues on my genetics when they damn well knew my genetics before I went! I was sent a ton of supplements hoping to help my body calm down, but I reacted to all of them. My throat turned red, I would get panicky and my throat would close up.

I believe the stem cell clinic doctor knew that they messed me up and offered free treatment and offered to pay for my flight. The doctor wanted to give me steroids and wouldn’t tell me what else. Steroids are extremely dangerous for someone with Lyme Disease and Mast Cell. I could not fly safely. It was risky to even go to the store. I was allergic to everything around me. I realized at this point I was on my own. So I was left to fend for myself closer to home. I begged for a refund since I spent everything for this treatment, but they wouldn’t offer one. It was devastating.

A year after mast cell started, I developed POTS and dysautonomia. Just when I didn’t think things could get any worse, this was way worse than I ever imagined. I faint all the time, I have vertigo when I fall asleep, and I cannot work alone anymore because it’s too risky. Traveling is impossible. I don’t go out to eat anymore. I’ve lost my taste completely. I have weird rashes and itch all over. I have SEVERE INSOMNIA and I cannot sleep without taking Xanax or my throat closes up. I have zero social life. I’ve lost half my hair and have bald spots. My skin is aging like crazy and I had great skin before this. I eat 10 foods and I react to almost everything. I have major digestive problems that I never had before this. My throat closes up and I have difficulty swallowing. Needless to say, I have been through HELL and I wish I could go back and not do this treatment!!

A full refund would be nice. I’ve asked them three times very nicely and they said no. I now have to raise money for all of my expensive medications and treatments needed to survive this. I cannot bind, detox or treat which makes me a ticking time bomb for death.

The stem cell clinic has people in all the Facebook groups trying to shut the sick patients up. They are all about marketing and control. They have threatened to sue two of my friends for sharing their experience in other Facebook groups. This is extremely stressful as you can imagine for a sick person to deal with. This is why I’ve chosen to stay quiet until now.

I messaged the clinic and asked them to take my positive posts down on all social media. I told them I was doing horribly and they responded with the option of exosomes. I would never trust them ever again or recommend anyone to this clinic. What a nightmare.

I am told that there are several dozen other patients with similiar stories of harm from this clinic. Although I support private stem cell clinics using autologous products, clearly there are risks involved and patients should be made aware of them. I doubt this paticular clinic is advising patients of all the horrible adverse events suffered by this an other patients, and that’s a shame, license sanctionable for sure, and possibly even criminal.

I’m hoping the folks operating this clinic get what’s coming to them. Even though I am a private stem cell clinic supporter, I’m going to do what I can to make that happen.

Stay tuned!

Rick Jaffe, Esq.
www.rickjaffeesquire@gmail.com
rickjaffeesquire@gmail.com

What Should Happen if a Stem Cell Clinic Harms Many Patients?

What Should Happen if a Stem Cell Clinic Harms Many Patients?

Here’s my core position: I support a patient’s access to his/her own stem cells for any use agreed to by the patient after proper informed consent which is not tainted by false or misleading advertising claims by the stem cell clinic.

My philosophical/public policy/constitutional thinking is that people do/should have a right to determine what happens to their own bodies, so long as that right doesn’t endanger public health or safety, or impinge on another’s protected rights. I don’t see why someone else or some government agency should be able to stop me from using my body parts as I and a licensed physician see fit. If I want to waste my money or endanger myself with unproven and even potentially harmful treatments, I think I should be able to do so. People make foolish decisions which are actually harmful, like smoking and drinking to excess. It’s their right, self-destructive as it may be.

Further, my experience of being involved with stem cell clinics and keeping my ear to the ground in the field tells me that autologous stem cell transplants almost never causes serious problems, if the treatment is administered by a competent physicians.

I think the few highly publicized stem cell blindness cases at the Florida stem cell operation was an outlier based on some incredibly poor judgement on the part of the clinic operators. The other infamous clinic/defendant in the FDA’s injunction actions, the California stem cell treatment group was accused of using a deadly vaccine toxin which could cause harm. I don’t know much about that their use of toxins, but I know is was part of a protocol for stage 4 cancer patients. And what I haven’t heard or read about was any actual harm to patients receiving that treatment. In fact, third or fourth hand and I’ve heard that the results are good. If so, too bad they’re not making more of that. That’s what I’d be advising them to do, if that’s really the case. (And as some of you might recall, I’ve got some experience with this. See chapters 1, 2 and 4 of Galileo’s Lawyer. http://rickjaffeesq.com/galileos-lawyer/

My sense of the relative safety of these procedures was confirmed by a recent published report which did a google search of all reported stem cell adverse events. I wrote about that study. Here is the link:
https://wp.me/p7pwQD-fd

Bottom line less that 40 reported serious adverse events, 11 or so deaths worldwide associated with stem cell treatment, one of which occurred in the U.S.

Of course, there could be and most likely have been serious adverse events not reported in the media, but still, the numbers of reported events seem to me incredible small based on the Knoefpler et al reported 700 plus stem cell clinics in the US alone.

All that being said,

recently I’ve been in contact with a couple of patients complaining they have been seriously harmed by a stem cell clinic.

I’m told that there are forty or more patients who experienced the same kind of injury resulting from stem cell treatments for Lyme disease. I’m not a doctor, but I have worked on a few Lyme cases for doctors, and it’s not obvious to this layman why stem cells alone would do any good for Lyme disease. And it’s possible that the harm is resulting may not be from negligent administration, but from the treatment itself causing MAST cell issues, exacerbating autoimmunity problems, and that would be a very bad thing for a Lyme patient.

The patients are starting to talk about a class action against the clinic (and hence the call to me). Supposedly, the FDA is looking into the clinic, and perhaps the state medical board. I think the FDA is too blunt of an instrument if there is demonstrable continuing actual harm. Rather, this should be initially and primarily a state board issue. I hear an investigation is underway, but if there are really several dozen patients who have been harmed, what the state board should do is start a summary suspension proceeding which stops the doctor administering the treatment immediately, pending a full board case.

The other disturbing aspect to this is that it could be that the physician isn’t even making the decisions in this case. The board needs to investigate that as well.

So even though I’m an advocate for private stem cell clinics, if you’re a Lyme patient contemplating any kind of stem cell treatment by a private stem cell clinic, here is my three-word advice: Don’t do it!

If you’ve taken the treatment and think you’ve been harmed, at least complain to your state board.

Rick Jaffe, Esq.
www.rickjaffe.com
rickjaffeesquire@gmail.com