The Decline Continues — but perhaps Hope??

My number one symptom these days is dry mouth. I tested negative on both the Sjogren’s antibody test as well as the early Sjogren’s panel which goes back five years so most of my doctors don’t think I have it. It’s also a symptom of Pernicious Anemia which I was diagnosed with end of 2020. I’m literally only producing saliva under my tongue. It’s also a long hauler symptom of COVID which I had this past March but was over it in four days knock on wood considering I’m not vaccinated as every single one of my doctors said it was way to risky for me with mast cell activation syndrome. In any event, I’ve been horribly miserable. I can live with joint pain, the horrid spasms I get in my calves and hands and toes as it’s temporary but the dry mouth is from the second I wake up in the morning until I go to sleep at night — sleeping or making out with my husband is the only relief I get. I’ve been in a yahoo group of doctors who perform ozone treatments for many years now. I’ve become friends with one of the biological dentists in the group and she’s had success in her practice in Fresno using bio photomodulation (red light laser) even on Sjogren’s patients. She found me a local dentist and my first appointment with him for the treatment is this Thursday. My friend, Lety said her patients start feeling saliva coming back after three or four and it takes up to nine for it to really work and then they return once a year for touchups. I’m praying it works. I’m also seeing my old pain management doctor on Thursday morning to discuss doing stellate ganglion block injections to reset my autonomic nervous system. People with h-Ehlers-Danlos Syndrome have dysautonomia. Another symptom of dysautonomia is a cold clammy sweat. It happened twice to me last week. On Thursday by the time I got to Irvine for my IV’s, the back of my dress was soaking wet.

I also started wearing a medical alert bracelet. When I put it on last night I started to cry but I know it was the right thing to do as if heaven forbid I ever become incapacitated, the paramedics will know I have Pernicious Anemia and will know I need B12 shots for the rest of my life and they’ll know I have h-EDS and to not give me Cipro or Levaquin which could land me in a wheelchair. Drugs like those can tear up connective tissue in people like me as EDS is a genetic connective tissue disorder.

In any event, I do have a little bit of hope. I heard about a supplement protocol last night for EDS people called the Cusack Protocol. It was developed by a mother and her daughters as they all live with this. It uses supplements to support the mitochondria (the energy source of our cells) and to strengthen collagen and connective tissue. They developed this protocol until a cure is found for EDS which I hope happens in my lifetime. So far they still haven’t discovered the gene that causes the hypermobility kind of EDS. Hopefully if they do a cure won’t be far behind but sadly I’m not optimistic. I’m praying however that doing the protocol for the rest of my life will prevent me from needing joint replacement surgeries, the incredibly scary brain surgery which I’m borderline for because of cranial cervical instability. Because I have lax ligaments, my brain is literally collapsing and pushing on my brain stem. Before I began regularly getting stem cell injections I was getting what’s called cerebral seizures where I’d slur my words and either pass out or get super drowsy when I began having them during the day. It was terrifying. The first time it happened, Kris was watching me sleep to make sure I was breathing as he thought I may have had a mini stroke. The surgery is to hike up my brain and fuse it into place. It’s a dangerous and risky surgery that could cause me to become paralyzed. The other issue I’m having is that my rectum is prolapsing. When I have a bowel movement, I’m wiping and wiping and wiping and have actually lost control a few times. I’m crossing every body part that the Cusack Protocol prevents me from needing these surgeries as well as joints replaced. My right shoulder was subjugating this year but after getting stem cell injections in Cabo in March, it’s been okay and has remained in place. I don’t want shoulder replacement surgery — I’m pretty much done with ALL surgeries as well as being a professional patient, as my beloved now deceased Dr. Aron Bick used to call people like me. He always said his goal for me was to stop being a professional patient, and G-d knows, I’m ready to achieve that goal so stay tuned!!