In February 2010, I met with one of my doctors to determine what path to take next. In that appointment, it was suggested that we had gotten the majority of the benefit I would get from further antimicrobial or detoxification therapies. It wasn't that I wouldn't continue to need to address both infections and toxicity on an ongoing basis, but we seemed to be in "maintenance mode" with these aspects of my condition. I had done quite a bit of work on the emotional aspects of illness along the way as well. So, what next?
It was suggested to me that it was time to look for ways to reverse the 14 years of damage that had taken place as a result of having had Lyme disease; untreated for almost 9 years before it was diagnosed. In looking at regenerative therapies, stem cell therapy is one of the emerging options that appears to be quite promising. So, over the next several months, I started to do research on the various options.
Stem Cell Therapy Options
The first option was embryonic stem cell therapy in India. I had at least half a dozen friends that had already gone to India for therapy and the results were quite impressive overall. It was not a miracle for all of them, but it was probably the closest thing to a miracle I had seen from any one intervention. However, I never seriously considered this option as it would have required several months away from work which wasn't a viable arrangement for me at the time. For those that are interested in the India option, one of the best sources of information is available here.
The second option that I considered was autologous stem cell therapy which is available in the United States. This is a procedure where your own stem cells are obtained via a blood draw, activated, and then reintroduced into your body. One benefit is that they are your own cells so they should in theory not provoke any kind of a negative immune response. At the time I started my research, I only knew of one clinic doing this work with Lyme disease patients, and it was far too early for me to feel ready to take the leap. I knew a few people that were doing the therapy with unclear results so I crossed this option off the list. (Interestingly, I'm more open to it now and will discuss that later.)
The third option that I was aware of was umbilical stem cell therapy in Panama. The Stem Cell Institute was the same clinic where Dr. Paul Cheney had been sending his CFS patients with reportedly good results. The stem cells are taken from donated umbilical cords of healthy babies born in Panama or Costa Rica. About this time, I met a lady that had already gone once prior and had very promising results. She was a CFS patient but also had Lyme and related tick-borne infections.
I asked several different doctors for their thoughts on the Panama option and other than cost/potential benefit ratio, I got very positive feedback, including from one doctor that had personally toured the Costa Rican facility that had previously been run by the same company. So, after months of researching and weighing the options, I decided to proceed with umbilical stem cell therapy in Panama.
In late August 2010, I went to Panama to have stem cell therapy. I decided at the time that I wasn't ready to talk about it publicly and that I needed to have my own experience with the millions of new friends that would soon be running around within me. I also felt like I didn't really have anything to say early on in the process and honestly, I'm still forming my opinion on the benefits of the stem cell therapy.
So, while this is still a work in progress, I figured the six month anniversary of my trip to Panama was a good time to share my Panama journey. I went to the clinic in Panama each day from Monday through Friday. The first day was to get blood drawn and talk about the procedures with the doctors. The second day was the spinal tap and one of four infusions and the third, fourth, and fifth days were infusions only.
The following is a breakdown of each of the five therapy days in Panama from my notes taken while I was there:
Clinic Day 1: After arriving at the clinic, I filled out several consent forms and patient intake information. I then had about 10 vials of blood drawn. Many of these were being used to get the plasma which is mixed with the stem cells and then re-injected as part of the stem cell infusions. The remainder were for various blood tests that the clinic performs before one can get the therapy. After the blood "extraction", I met with the medical director and spoke with him for about 20 minutes. He took some basic vitals and performed a physical exam.
He shared with me that embryonic cells are pluripotent and can become muscle, heart, nerve, and other tissues but that they have a risk of uncontrolled tumor growth. Umbilical cells have limitations in that they do not become any specific tissue in the same way that embryonic cells do, but they can promote significant healing. They use a combination of CD34 cells and mesenchymal cells. CD34 cells affect blood vessel growth and promote angiogenesis. They improve circulation and oxygenation and are able to help the brain as a result. Most of us with chronic Lyme and other chronic illnesses have some degree of hypercoagulation and impaired blood flow.
Mesenchymal cells can improve connective tissue, bone, cartilage, and muscle. They are primarily anti-inflammatory and secrete various compounds that promote repair. They correct imbalances in Th1/Th2 immunity and are able to positively affect the immune system. He stressed the importance of adequate vitamin D3 in order to maximize the benefits of the procedures. He also stressed that adrenal function is important and that minimizing stress would be critical in optimizing the effects of the stem cells. He indicated that there were studies that showed that umbilical stem cells positively impact organs such as the liver and kidneys. Once the stem cells are introduced, they do continue to replicate. They have a duration of about 6-12 months to do their work and then they are done and no longer remain in the body.
After returning, I wanted breakfast! I had been fasting and it was noon. Unfortunately, breakfast at that time is a nearly an impossibility here unless you lay your own eggs. I thought for sure I could get the lady at the Rosetta Stone kiosk at the mall to help me, but her English was not very good. Imagine that.
Clinic Day 2: I was quite anxious the second day in that I was not excited about getting the spinal tap. With all the things I've done along the way, I was surprised to feel this way and did briefly ask myself if I really wanted to do it. Of course, I wasn't going home now, but there was some nervousness about getting a big needle shoved into my spinal cord.
At around 2pm, I had the spinal tap done. It wasn't nearly as bad as I had worried it might be. The doctor that did the procedure was superb. She told me that if I was good, I'd get a popsicle when I was done. Apparently "popsicle" in Panama is what we call a lollipop in the United States. I laughed.
Next, they did the infusion of stem cells. This simply consisted of a procedure much like a blood draw but instead of drawing blood, they push in the stem cells from a syringe into your body. I had to stay on my back for 3-4 hours afterwards to avoid a spinal tap headache. I felt very warm and flushed after the procedure. When I finally got up to go get something for dinner, I felt as though I was walking in slow motion. My legs felt as if they were not the same height and I could not quite tell where the floor was. It was nothing too extreme and apparently part of what people report after the procedure. I was glad that the spinal procedure was done. And yes, I have the whole thing on video....
Clinic Day 3:
Day 3 was uneventful in that the rest of the week was simply getting more stem cells via infusion. It is interesting how many kids with autism were getting the stem cell treatment in Panama. I then went back to the hotel, had lunch, and took a nap for a few hours. I could feel a warm sensation from the stem cells but it would take months to determine the eventual benefits. I had a very mild off and on headache, but nothing too notable.
Others had stronger reactions, but most people seem to be tolerating the treatment pretty well. I went to dinner that night with a few other folks that were also getting treatment the same week. The translation of the place we went to eat was "Mr. Fried Plantain". It was superb. In fact, we went back again later in the trip to the same place.
Clinic Day 4: Day 4 was the third day of receiving stem cells as day one was not a procedure day. So, I had only one more day of treatment remaining after this one. The infusion was the same as the previous days. Later in the day, we took a tour of the lab where the stem cells are actually prepared. It was a very professional operation located near the Panama Canal. We spent about 3 hours at the lab and learned a lot. Afterwards, we went to dinner with friends and had a nice evening.
Clinic Day 5: We went to the mall to get some chocolates as a thank you gift for the staff at the clinic. I had the fourth and final treatment and then started preparing to return home. It had been an interesting week and now it was time to sit back and watch for the benefits to emerge over the next several months.
Three Months Later
The three months following the stem cell procedure were quite a roller-coaster with many ups and down. I was still able to work and function well most of the time, but there were some difficult days. The day after I returned, I had an intense sore throat and viral symptoms that lasted for a full month. It then seemed to go away but quickly returned. Essentially, I had sore throats and night sweats that lasted for the better part of three months after I returned. My EBV and HHV-6 antibodies were highly elevated. When I talked with the clinic doctor in Panama, they considered this a very good sign indicating that my immune system was now fighting some of the chronic viral infections that we likely all carry.
I had retracing of some symptoms I have not experienced in years. For example, I used to have motor-like tapping sensations and vibrations in my left foot all the time. That had been gone for at least a few years but suddenly returned. I used to have burning sensations in my foot so bad that I couldn't wear shoes to work because it hurt too much. Well, twice for a very short period of a couple of days, these symptoms returned. Of course, my immediate thought was one of concern and as fast as they came, they went.
Fortunately, energetic testing suggested that it was the result of the stem cells and not a flare or relapse so I didn't worry too much. One thing I never had prior to Panama was headaches. It just wasn't, fortunately, something I often experienced. After the procedure, I had numerous headaches which also energetically tested were related to the stem cells. It seemed that the cells were busy at work clearing things away.
One headache got so bad I thought I was having a stroke or aneurism. When I left the movie theatre, I could barely get to the car, then I vomited all over the parking lot and then was fine. It was like nothing I had ever experienced before. The headache was very mild for another 2 days and then went away. It seemed that I was having both a significant detoxification event as a result of the stem cells and that my immune system was addressing some of the chronic infectious burden that I had not been able to do on my own in the past.
I could not discern any physical changes at that point other than I was able to go to the gym more than I did before and I could jog on the treadmill without having any problems. Then I did some weight training which I had never really done before. Both felt good.
I had times where I needed much more sleep than I did before and that seems to be common among the other people I've talked with that went to Panama at the same time. Maybe 1-2 hours a day more on average was what I seemed to need. Funny thing was the quality of my sleep was much worse and I had many unusual dreams for about six weeks. Then it seemed to pass.
My acupuncturist told me upon my return that my body was like putting your ear next to a bee hive - lots of "buzzing buzzing buzzing". After about 2 weeks, she exclaimed, "They have found their places". Recently, she said that she truly felt I was well now and I that I need to learn to trust my body and my body needs to learn to trust me. That resonated with me very deeply. It's difficult to become friends once again with a long-time enemy that previously turned their back on you. She told me that I was "creeping out from under the rubble".
My medical intuitive said she hadn't seen such shifts in a person in 20 years of doing the work she does. She said that the immune system's balance of Th1 and Th2 had been corrected by the stem cells and that she was seeing that my organs were becoming stronger after the procedure.
When I muscle tested, I got consistently that the stem cells were working on pituitary, thyroid, adrenals, and pancreas. That seemed to the where they were doing most of their work.
I went to my EAV practitioner who originally suggested Lyme may be my underlying problem in 2005 and asked her to scan me on her computer for any possible issues, treatments, etc. After about 20 minutes, she said she could find nothing wrong and nothing that my body needed at that time. She said, "We're done".
My LLMD shook my hand and said that I clearly had improved because I was no longer cold. The stem cells address circulation deficiencies. He said I need to really think about what I want to do next, if anything, in the world of Lyme disease as I was near the end of the journey. On a separate visit, he said that an analysis of my pulses indicated that I was much more balanced and had a stronger foundation.
Recently, I was at a conference with Dr. Klinghardt and shared that I had some strong reactions initially but that I still hadn't seen that big physical changes I had hoped for. He said that I may not see it but that to others from outside, it was very clear. He said that my "vitality" had notably improved and that he could clearly see the benefits of having done the procedures.
While all of the feedback from my practitioners was unanimously positive and I did feel some very profound physical things the first three months, I can't say that I had that miracle moment where one specific thing shifted.
I was hoping to see some improvement in some of my remaining visual issues as others had in the past, but that hasn't happened....at least not so far. That said, I do feel like I got some benefits in stamina and some additional reserves. The next question is whether or not to go back for additional treatment, and that's a question I have not yet been able to answer. My intuition is that the stem cells are still working within me though the reality is that this period of time should be ending soon.
In about six months, I'll consider what next steps to take with regard to more stem cell therapy, if at all. I will be working with a couple of my practitioners that do energetic testing to get a clearer picture as to whether or not I would get additional benefit from more procedures. Once I have that question answered, then I'll decide which option to pursue. I may return to Panama for another series of procedures, but I am also open to the idea of the autologous stem cell procedure I mentioned above.
It will still take more time to tell what the final benefit of the Panama stem cell procedure will be and what to do next, but I'm glad I went. The staff there is wonderful and I appreciate the blessing of having had the opportunity to go there.
Update January 2018: I've been asked a few times recently how I look now at stem cell therapy and if it helped. After I went to Panama as outlined above, I ended up going down other paths towards wellness. I did not return to Panama as had been suggested. So to be fair, my experience was based on only partial treatment. I did find the team in Panama to be very professional, but I can't say that I had any significant benefit from going.
In general, my observation has been that people that do stem cell therapy often do it too early in their recovery. They haven't explored mold, they haven't explored detoxification, they haven't dealt with the underlying emotional issues, and they haven't explored their microbial burden. I think stem cells have more potential the closer you are to being recovered. Many people see it as a "get out of jail free" card, and that rarely seems to be the case in my experience. Just because it costs more doesn't mean it works better.
Have I seen some people benefit from stem cells? Yes, absolutely, but this has been the minority in my experience. I can think of a few, but I've also worked with several people that have done stem cells and saw no results and are still looking for answers. I guess the bottom Lyme is that, like most things with Lyme and similar conditions, nothing is a magic bullet. Stem cell therapy isn't the first place I would look for answers.