Last time I told you that I finally had a diagnosis and I was looking into stem cells. It took me several weeks, but after talking to people in Facebook groups, contacting a couple of clinics and viewing some youtube videos of patients who had my rare diagnosis, I made the decision to go to Dream Body Clinic in Puerto Vallarta. I wanted to go before the weather got too hot and humid. Here is the link to DBC's treatment protocol for Hereditary Spastic Paraplegia.
There were no direct flights to Puerto Vallarta from Charlotte, so I decided to break it up over 2 days with shorter flights and of course, take a few extra days visiting our daughter, son in law and grandkids on the way home.
We flew to Dallas on Feb 28th and stayed at the Westin. Our daughter was out of town, but we called Lance and he drove to our hotel with the kids. We were a surprise to the kids, since he hadn't told them we were in town. Kai had been asleep when got in the car and woke up when Tim and Lance were outside the car. Kai woke up and saw me sitting in the front seat. He blinked in disbelief, I said "hello" and gave me a big smile as he jumped up to the front seat into my lap and gave me a big hug and wouldn't let go for the longest time. I said "that is the best hello I've ever had". So great!
We all went to In n Out and had dinner, then Lance dropped us off at the hotel. We told the kids we'd be back to stay a few days on Friday.
We flew from Dallas to Puerto Vallarta on Sunday March 1st.. Since it was reported that the cartel burned several Oxxo convenience stores and cars in the street because the cartel boss was captured and killed, the plane was less than half empty - 62 passengers, I think the flight attendant said the plane had 172 seats. It was a quick flight. (we never saw any burned Oxxos, and we saw 6 or 7, the whole time we were in PV)
Upon arrival to Puerto Vallarta, since I was in a wheelchair, we were helped with our bags through customs etc. and out to the parking lot where a driver from DBC was waiting to drive us to our hotel. He gave us an itinerary with times I would be picked up each day.
Just as I was getting into my wheelchair/walker at the Villa del Palmar, the chair seat collapsed. Evidently one of the wires that held in the seat must have come out and lost during transport on the plane. Someone from the hotel brought a wheelchair out to me and told us we could borrow it during our stay. The driver also said he would bring a wheelchair for me the next day. We had arranged to rent a Rollator and have it delivered so I could use it at the hotel. It was waiting for me when we checked in.
After we got situated in our room, we went to their little convenient store and purchased water, cereal, milk and eggs for breakfast. We brought English breakfast tea and an infuser from home so I could have that each morning. That evening, we had a nice dinner at one of their restaurants that overlooked the beach at sunset
On Monday March 2nd, a driver from DBC arrived promptly at the hotel entrance at 8 am in a white Ford Expedition to bring us to DBC in Bucieras.
Once in the clinic, the nurse took my vitals, then drew blood for labwork. Then, an administrator came in and we paid for the stem cell treatment I'd get tomorrow. I also asked about cerebrolysin, which is a peptide good for the brain and added that.
Once all that was done, we were driven back to the hotel. We sat outside under an umbrella near the pool, ordered tacos poolside and Tim ordered a beer. We had another nice dinner at the Italian restaurant. Not sure why we didn't go to the other restaurant near the beach.
On Tuesday, another driver arrived at 10:30 to take us to the DBC Clinic.
Once there, a nurse took my vitals. Then we went to another room and talked to a female doctor about the labs. They had done a CBC, checked some hormones and a test that checked for cancer. I had none detected. They check for cancer because it isn't recommended to give stem cells within 5 years of having cancer.
The doctor explained about the treatment I'd be getting, 50 million stem cells injected intrathecally and 200 million stem mesenchymal stem cells via IV. The doctor gave me a box of 20 Tramadol and a small bottle of Tylenol should I have pain after the treatment. (I did)
I asked about MUSE cells and how long to wait until I came back for another treatment. Was told that stem cells take 3 to 6 months to start working.
I signed a consent, then was taken to treatment room for intrathecal injection.
I was put in a disposable gown. (took shirt off first) . Doctor, nurse suited up (mask, hair covered, gown and foot covers) and then since I have trouble walking, my driver suited up and helped me into the room and onto the table.
I sat on the table was given lidocaine, then given the injection in my spine while the nurse held me.
The injection hurt a bit and hit a nerve in my leg, which was an odd sensation.
After the injection I got dressed and was taken to another treatment room with recliners and got comfortable.
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| The view from the infusion room |
An IV was inserted in arm by the nurse; Tylenol given in IV, then melatonin added to IV to increase absorption of stem cells.
Doctor came in and prepared the stem cells in another IV beg, then started the stem cells at 12:30. The stem cells took awhile, but after I got a low dose of NAD and some vitamin C.
Getting the stem cell treatments took a couple of hours, then was driven back to the hotel.
I rested that day (Tuesday) and took Tramadol that evening. I was not hungry that evening and didn't eat dinner. At first I took 2 Tylenol, but 3 hours later I needed more, so I took a Tramadol before bed. My symptoms were worse - burning/freezing legs and feet, weak legs, had a headache, and crushing fatigue.
On Wednesday and Thursday I took Tramadol every 8 hours and stayed in bed. Had some pain in my lower spine whenever I put my head down. I needed wheeling to the bathroom by my husband. Not very hungry at all.
Of course opioids stop you up, so I took 3 Magnesium Citrate on Wednesday to keep things moving.
On Thursday, I noticed that it hurt a lot less when I put my head down and by the afternoon I could walk to the bathroom using the rented Rollator and didn't need to be wheeled there by my husband. The fatigue wasn't as crushing. I'm glad I had planned for an extra day at the hotel than was suggested.
Friday, we packed up and was picked up by a driver who took us to the airport for our flight to Dallas.
Puerto Vallarta airport is crazy, is LOUD and doesn't have a gateway to all the airplanes. We were taken on a shuttle onto the tarmac and had to climb steps up to board the plane. Of course, I can't do that many steps, so 2 men had to carry me up in a transport chair and was taken to my seat.
Back in DFW on Friday, we rented a car and drove to the Holiday Inn, which surprisingly very nice. It was a new hotel and the accessible room was large and the beds were really comfortable . If it had not been acceptable, we would have moved to the Omni Resort, which was nearby. The hotel was only a few miles from our daughter's house. She doesn't have a shower downstairs, so it was better that we stayed at a hotel. I also rented another Rollator and had it delivered to our daughter's house.
I was still tired and had increased pain while we were in Dallas, so I was still taking Tramadol or Tylenol when we were there. We had a nice time visiting with our grandkids, our daughter and her husband. We flew home on Tuesday.
I wrote in my notes that my legs were less on fire on 3/13.
As for the cerebrolysin, I waited until I felt betterer to start the injections. and I stopped because my legs were getting worse, and I couldn't take it anymore. I was supposed to get an injection 20 days in a row. I will look for a place near us that offers cerebrolysin administered another way.
...and now we wait, and pray...
COSTS:
Airline flights, bags, to & from DFW, then PV - $2,431.06
Westin 1 night - 179.99
Villa del Palmar, including dinners and lunch & market- $2620 + $323
Stem cells - $11,300 Cerebrolysin $600
Tips - drivers, porters at airports - $100
misc food at airports, parking - $82.48
Rollator rental in PV - $57.57
I didn't include the Holiday Inn or the car rental since that wasn't a cost related to stem cells.
