Updated: Aug 8, 2021
I know you are all concerned for Lissa and wanting to help and we remain grateful for all the love and support we are receiving.
In an effort to keep you all in the the loop on what we are doing now and considering, below are the many tracks we are aggressively pursuing to try and slow the progression of her Motor Neuron Disease (MND).
1- Recent Amylex trials have shown that AMX0035 has slowed the progression rate in ALS patients. Drug is not yet available
And entering a phase 3 trial.
The drug is however made of two approved substances : Tauroursodeoxycholic Acid (TUDCA) and Sodium Phenylbuterate (PB). TUDCA is supplement and PB is an available drug. We are putting Lissa on both.
2- Neruologist (Independent)
Has put Lissa on multiple neuroprotective substances and she recently completed High Dose Methylprednisone 1000mg 3 consecutive days to see if that helps with possible inflammatory process. We are also going to discuss Stem Cell injection possibilities with him and any other cutting edge treatments he may offer.
3- A Duke University study showed clinical slowing of ALS symptoms with combination Of Theracumin, Resveratrol and Green Tea Extract. She is now on all three supplements.
4- LYME- We thoroughly tested her for Lyme through Igenex Lab, PCR, and Spinal Tap testing. All testing came back negative. Our Lyme Doctor who has an holistic approach to healing is administering Ozone treatments. She is doing Infared Sauna treatments as well at home.
5- Oncologist USC- has had her on Gazyva treatment for her Leukemia hoping that it was somehow related but treatments have not slowed progression so they have been discontinued. Her Immunoglobulins are extremely low so she is currently on IVIG treatment to support her immune system.
Glutamate is a known excitatory substance in the central nervous system and studies have shown an imbalance of glutamate/gaba in ALS patients. We are cutting out the main offending foods,- all condiments, sauces, all soy, turkey, tomatoes, mushrooms, grapes, peas and any prepackaged foods with the term "natural flavors" listed as an ingredient.
Gluten has also been identified as a possible player as it causes an inflammatory process in the body so we are avoiding gluten products as well- all wheat products etc.... We have also eliminated caffeine.
6- Sativa CBD/THC has known properties which calm brain excitatory function and she is taking that as well.
7- We are meeting with UCLA ALS Doctor to see what they have to offer and we will be taking advantage of UCLA ALS CLINIC and all supportive services - breathing, PT, OT, mobility as needed.
We are casting our net wide in an effort to find something that works for her. I'm certain our path will shift and change as we remain determined to remain flexible and open to whatever may help her body fight the good fight. As you all have come to know Lissa over the years she is loving, generous, constantly worried about her friends and family (four legged critters included) and can be one tough cookie when needed. She is drawing on that strength now as she remains hopeful for a reversal or at least a slowing of the illness.
We love you all and will need you all as this process evolves.