Stem Cell Diary...part 1

 

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.

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 bag, 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 Express, 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 Express or the car rental since that wasn't a cost related to stem cells.

I FINALLY have a diagnosis!

 2025 was no fun and I'm glad it's over! As for the diagnosis...I'll get to that in a bit.

Last time, I left off with a new plan. Better Brain and Body and EBOO. I finished treatment at BB&B and was going to PT once a week. Things were going great and so on May 13th, I went to PT and was doing so well my therapist pushed me for the whole hour. I should have stopped after 30 minutes.

I cried at the end because I had overdone it. I couldn't walk the next day or the next.....

The following week my husband went on a hunting trip for 5 days. He had breakfast, and lunches prepared and dinners completely made and everything was set out. In the past, I was able to get to the kitchen and make toast or a smoothie, etc. This time, I could barely walk.

I was so upset that I did this to myself for not knowing my limits. I cried in despair every day. 

My husband came home for a few days and then went to our mountain house (we had a leak at the house a few months back, so he had to check on things. Looking back, I should have asked him to stay.

Of course, I was still not able to walk very well and cried every day in despair.

When he got home on May 30th, I was waiting in the chair by the door to the garage. 

I think I'm having a heart attack. So he called 911.

Ambulance came and they did an EKG? Was taken to the ER in Pineville.

Again, an EKG was done and I was immediately taken to the Cath lab. 

Turned out, I didn't have a heart attack, but a Takotsubo Cardiomyopathy event. What is that? I had never heard of that. It's also known as broken heart syndrome or heart failure from stress. I had no idea crying in despair could cause that!

Doctor said my heart would recover and was sent home on Monday.

On Thursday I was having weird, horrible heart symptoms. Again, an ambulance was called and I was taken to the ER in Charlotte.I was in Afib. Oy, that was no fun and I was admitted for several days. I was given Amiodorone and I couldn't feel my feet, it made my neuropathy worse and I felt dizzy.

I was given a bunch of different drugs that I had reactions to.

I was talked into going to a Rehab hospital and left CMC on Tuesday. What the hell was I thinking?

The Rehab hospital expected me to do THREE, 1 hour sessions of PT. I could barely stand or wall 5 feet! I noticed that I got worse an hour and a half after taking the Amiodorone and I planned to stop taking it and to go to a nursing home for easier rehab. (another mistake)

Finally got moved to the nursing home on Wednesday (a week later). This place looked very nice and had decent food, but I wanted to go home. On Friday or Saturday, they said they were going to have a meeting the following Wednesday about my treatment plan and I said I wasn't going to be there that long. 

I couldn't get out of bed or the bed alarm would go off, so I had to ring for help every time I had to go to the bathroom.

On Saturday night/overnight, I called several times and no one came. It had been more than 30 minutes, so I struggled for my walker (which was put out of my reach), but I finally got it and jumped out of bed.  The bed alarm went off, but I was on my way to the bathroom. The CNA finally came and was surprised that I was already in the bathroom cleaning up because I had gotten there too late. 

That is the only time I've ever yelled at a CNA. I  WAS ANGRY and crying.

The next day, I texted my husband and said I wanted out of there. He came as soon as he could.

I told the nurse I wanted out of there today. Some other people came in and said since it was Sunday, there was no doctor to release me and told me if I left that Medicare wouldn't pay for my whole stay if I left against medical advice. I was PISSED!

Hadn't had Afib since I left CMC, but started having Afib later that afternoon. I finally let the nurse know after about a half hour. My husband got my things ready while we waited for an ambulance.

Got to the ER and was there for about an hour or so. The doctor came in with a syringe of Metoprolol and was just about to give it to me, but my heart had returned to normal sinus rhythm and I was free to go HOME. So I went home! HAHA! I got to go home anyway. Thank you Lord for the Afib!

Then, a week later I started getting recurrent UTIs. One after the other. These were caused by the drug cholchicine. (I'm not going to explain how)

Had 8 rounds of antibiotics for UTI's  from June 29th - Nov 8h. Went to a Urologist towards the end of all that and was given Premarin cream, but I didn't want to take that. Found Interlude estradiol cream on the internet, it was prescribed and I started using it. I am also taking Uqora Defend and Flush and a cranberry supplement. Urologist prescribed methanamine, but I developed horrible hip pain and worsening neuropathy in less than a week. I also use progesterone cream 20 days a month.

Thankfully, the UTIs have stopped.

More doctor visits in between the UTIs; an Electrophysiologist and a Cardiologist. When I asked the Electrophysiologist how long I'd be on the Eliquis ($546 a month), he said forever. I told him that wasn't happening. That appointment felt like him selling me on ablation, or the implantable Watchman device, as if I'd have Afib forever.  I hadn't had Afib (at that point) for about a month) and believed it had been caused by the Takotsubo event. I told him the metoprolol I was making me dizzy, giving me a headache, making me itch etc.He said to keep taking it. 

I took Eliquis for about a month and a half, but decided to stop taking it because it started giving me a non stop headache. From what I had read, blood thinners reduce ischemic strokes by (I think) 10%, but the same study said it INCREASES hemorrhagic stroke by 30%. I was taking Eliquis to prevent a stroke due to Afib, but I had not had Afib (at that time) for 40 days. 

Later in August, I told my Electrophysiologist that I wanted off metoprolol. He said to just stop taking it, even though I had read to taper off. I started having high heart rate and some other symptoms, so I went back to 25 mg twice a day. It took me over a month and a half of cutting an 1/8th to 1/4 of a tablet off every 4 or 5 days to finally get off metoprolol.  I would lower the dose when my heart rate went down. 

So, needless to say  I have a long list of drugs that I have bad reactions to. My Cardiologist agreed that Pharma and I don't get along. 

An ultrasound of my heart in August revealed that my heart had recovered and my Ejection Fraction was 62%. A normal ejection fraction is 50% to 70%. 

In September I started weekly EBOO treatments. EBOO is Extracorporeal Blood Oxygenation and Ozonation. It detoxes your blood : parasites, viruses using a filter like dialysis and then ozone is added. In 2024 Covid reactivated Epstein-Barr, so EBOO would help that.

This brings us to November, Thanksgiving, then Christmas. We got to celebrate Christmas with our daughter, son in law and grandkids. Our youngest came home from visiting her fiance's family in another state and we all had several lovely days together. 

Which brings us to January. After 6 months, I had a long awaited appointment with a neuromuscular neurologist. He asked me a lot of questions, examined me and after 30 minutes, he suspected what I had and ordered a single specific genetic test for Hereditary Spastic Paraplegia. About a week later, the test came back and I do indeed have Hereditary Spastic Paraplegia, specifically HSP52. HSP explains all my symptoms; dizziness, muscle tightness and neuropathy from my toes to the middle of my chest. bladder issues, eye problems, etc.

Hereditary Spastic Paraplegia can start in childhood. Thankfully, my symptoms didn't start until I was in my 40s and it didn't start affecting my gait/walking until my late 50s. My neurologist said this disease takes two parents to carry the gene and then children have a 25% chance of getting it. I don't remember any of my relatives having neurological symptoms and none of my siblings have developed symptoms. Lucky me. HSP is a progressive disease.

I've already started looking into stem cell treatment. (from donated umbilical cord)

Every single symptom I have that I can think of:

Dizziness, Vestibular problems(eyes blurry), freezing/burning/spasticity paresthesia from tips of my toes to middle of my chest, weak legs paresthesia starting in the tips of my fingers. bladder issues, tinnitus, hearing loss. I cannot stand up without holding on to something. I tire easily and it's difficult to walk 30 feet and stand up afterwards. I use a walker at home and a power chair when I go out.

Thankfully, I had a wonderful husband who basically does EVERYTHING. Shopping, cooking, laundry, cleanup, etc. Thankfully, I still have my brain and can do things like our budget, taxes, order necessities, etc. 

Thanks for stopping by,

Pam