chronic lyme disease with a taste of nut
To every great song there is a prelude, right? Every good book has a prologue. My prologue is that it has taken me 8 days to write this blog post. Between being sick and being busy plus just not having the mental energy to pound this out in 1 night like I would have done years ago, it has taken me 8 nights to do a little bit at a time. And honestly? I don’t know if I will finish it tonight. But that is my prologue. The epilogue will not be written until 6-9 months or a year from now…but I have high hopes that I’ll be pounding out many blog posts by then. And not blog posts about being sick.
August 14, 2017
Hello from Beverly Hills, California, where I am on Day 3 of my Stem Cell Treatment at Infusio.
So what the heck does that mean? Read on, taken from the Infusio Lyme brochure and web site:
(at the Beverly Hills location, the stem cell harvesting and infecting procedure takes around 2 hours total, a little more if you are choosing to have an extra injection, which I will tell you about later)
Before I get into the ins and outs of this, I want to clarify something that I only came to understand on day 1 of being at Infusio. I knew this wasn’t just any old stem cell treatment facility. Infusio does something that makes them stand out from the rest – and that is their pre-stem cell protocol: the 10 days prior to stem cell day where they optimize your cellular terrain by a plethora of supportive IV and other therapies.
But our nurse explained it best and I wish to explain it this way, too:
In the Lyme brochure from Infusio, it explains that instead of using pure stem cells, their Integrative Cell Therapy Program utilizes Stromal Vascular Fraction as a mode of cell therapy.
This is an extract, derived from fat tissue, which contains stem cells as well as a whole array of other important cells, exosomes and growth factors…Growth factors contained in SVF can turn off an inflammatory response. They can also cause cells to multiply and can call in specialized cells to perform specific functions. Studies indicate that stromal vascular fraction does much more than simply repair. Its application triggers a systemic response, activating the body’s ability to regulate cell function and promote healing.
The nurse explained to us on day 1 that rather than considering this stem cell therapy, it’s better thought of as simply Stromal Vascular Fraction. Of course, to the lay person, it is easier to say stem cell therapy or treatment, but I wanted to let everyone know what it is that Infusio does, what they believe in, and why I chose them. Their 10 days of supportive IV therapies as well as other supportive treatments (lymphatic drainage, detoxing, nutritional counseling, bodywork, and more) makes them stand out from the crowd. They have a follow-up procedure as well: weekly phone calls for the first 100 days. I liked their level of care, the interest they take in you as a person, and their understanding of treating Lyme holistically (meaning looking at the whole body, not just treating one symptom). I especially liked the idea of NOT targeting Bartonella or Babesia but considering your whole body ill (which it is) and treating the body. Not just an illness. Before I go further, let me emphasize: Infusio’s SFV Stem Cell Therapy does not cure chronic lyme disease. It gives you a “new” immune system so that your now-healthy immune system can best fiht off the lyme. And there are many, MANY success stories. And I truly believe I will be among them.
So before I go into my Day 1, let me invite you to my private Facebook group, “From Trying to Thriving” – there, I post pictures and updates as they occur. It is hard, I admit, for me to write out a whole blog entry. So if you are highly interested in this journey, please do put in a request to that group and I will happily invite you! Now, onward!
There are 6 of us ladies there now, 5 other co-warriors who are fighting this fight with me. The nice thing is — Infusio makes it widely known that the battle is not ours at this moment in time. We are there to LET THEM take care of us. To give us nutritionally-yummy IVs, bone broth, nettle tea…
green juice, warm cloths for our foreheads, calming music, massage chairs in which to sit and relax and chat with our neighbors.
I very much feel cared for there. And now that day 3 is here, I already feel very close to my 5 other Infusio sisters.
Day 1 was spent getting a tour, learning about what our days would look like, and understanding Infusio’s mentality. This really is not your typical doctor’s clinic. They know what we have been through at other doctor offices: disrespect, invalidation, complete dismissal. It has created trauma for many. So they invite us to come here…relax…and ask us to change our mindset from thinking we are our only advocate and must control all areas of treatment…to trusting that the Infusio staff knows what they are doing. And I will admit – for a person who likes to be in control….that is hard. For someone who has high anxiety, high social paranoia, high depression, and a low hope threshold…that is hard. After being mistreated and let down by traditional medicine, trusting any doctor or clinic to this extent is hard.
But that’s the beauty of Infusio. They get this. They understand it and let you know they understand it. And they will lovingly challenge you on the notion that you must be in control, know every CC of IV, know what comes next, know what comes after that, and oh, by the way, when the right side of my head hurts, that means I’m having a reaction, right? … Does it matter? It’s pain, illness, disease. This treatment will help that.
Some have a really hard time letting go of years of being their own doctor. It IS hard. The public often condemns the chronically ill for doctoring ourselves, doing so much research, and so much on our own. What they don’t understand is that…and I will only speak for myself, though MANY with chronic illnesses will understand…I really have been alone in all this. Doctor after doctor has dismissed and rejected me. It’s been awful. So of course trusting is hard. But the Infusio atmosphere is so welcoming…and the staff understand both the fragility and the strength which you bring with you.
And so Day 1 began. After the tour, we met the man who I consider to be the heartbeat of the clinic: Hollis, the RN in charge of all of our IVs. Along with an occasional assistant, it is he who administers our IVs, answers our questions, and calms our nerves.
On day 1, my husband and I had a very unfortunate mishap occur with a letter that was supposed to be taken care of. Hollis took hubby under his bro-wing and said, “My man, I will make sure this is taken care of for you.” And, ultimately, it was taken care of. And because I can absorb all the stress around me, including that of hubby, I was SO grateful Hollis made himself available to him so I could let go and focus on the IVs going into me.
For a detailed description of Infusio, go here.
So speaking of IVs, here is what I had on Day 1
By luck (sarcasm), I was first up for the infamous 10 Pass Ozone IV. From Infusio’s Lyme brochure, the 10 Pass Ozone therapy is described as this:
Ozone therapy is the use of ozone gas [intravenously]. Healthy cells are stimulated and multiply more rapidly. Ozone therapies are thought to stimulate white blood cell production, kill microorganisms, improve oxygenation, help the body to fight infections, and cancers, and stimulate the body’s metabolism.
Blood was circulated 10 times within my body and the machine beside me, opening up the cells.
Then, I received the Meyers’ Cocktail:
High intravenous doses of vitamins, minerals, and amino acids show a pharmaceutical effect and are traditionally used to [help] metabolic function by providing the body with vital nutrients. By bypassing the digestive system, the blood levels of micronutrients can be greatly increased allowing them to enter the cells.
I was told the Myers’ Cocktail was given after 10 Pass Ozone because it worked to close the cells after the ozone opened them.
I must say, as someone who has a reaction to EVERYTHING, I did not feel that much different on day 1 until I arrived back at the hotel that evening. Once “home,” I experienced intense neuropathy and psychological distress. I also noticed a swelling sensation in my face and arms and felt like Violet from Willy Wonka and the Chocolate Factory.
But although I inspected myself closely in the mirror, I did not look blue nor swollen. So I think it was just a weird temporary side effect. I would come to learn to just accept such weird side effects and not try to figure out where it came from and why it was happening. That change of thinking is major for me! This whole trip would be a game-changer in how I looked at life and perceived things.
Days 2 and 3 were different than Day 1 in that after getting your 10 Pass Ozone, you get between 4 and 5 IVs. So those days hit me harder.
The remainder of my days, I received (in rotation) the following IVs:
Dioxychlor is a natural antimicrobial ,which supplies oxygen to the cells. Administered in an infusion it may help eliminate toxins, parasites, bacteria, viruses and yeast.
Glutathione deactivates the most destructive free radicals and helps to recycle coenzyme Q10 – an enzyme found in the energy-producing mitochondria of all cells.
Is thought to have many benefits in the optimization of cellular functions, helping the cell rid itself of metabolic waste and toxins.
Are the basic building blocks of our cells. Given in combination with other substances, phospholipids can help with cell repair and detoxification.
This proprietary mix of vitamins, minerals, glutathione, L-arginine, L-carnitine, zinc, acetyl cysteine, and alpha-lipoic acid is compounded to help regulate cell and immune function.
This proprietary mix of amino acids is designed to support detoxification and repair of the nervous system. We commonly utilize this IV infusion in the treatment of neurological disease and central nervous system damage.
Liver Support Mix:
This proprietary blend of amino acids, glutathione, and homeopathics is designed to support liver function. This IV infusion is used in most of our programs to help support the metabolism of the liver during treatment.
Also known as wormwood extract, it’s commonly used in the treatment of Malaria. It is known to have antimicrobial and anticancer properties and is used in parasitic cleanses and fungal treatment.
A vitamin with brain restorative properties specifically for patients suffering from chronic conditions. It can contribute in the DNA repair process and improve cell-to-cell signaling. It is also known to assist the body in energy production.
Now anyone with lyme or anything close to lyme is likely thinking,
if you do all that to MY body, I’ll be like:
But I assure you, no herxheimer reactions! Honestly! Infusio prepares and distributes these IVs in such a way that is safe and does not leave you feeling… like, well the above gif.
That is not to say that I didn’t have any reactions. Of course your body is going to react to these IVs. As anyone with chronic lyme knows, a herxheimer reaction and your “immune system waking up” (a.k.a. feeling sick before feeling better) are difficult to tell apart. But with a whole week of treatment now behind me (remember, today is August 21) I can safely say that, while I did not become a fire-breathing-death-dragon, I did feel mighty awful.
BUT…it’s been a roller coaster. And so with the lows have been highs, too. We achieved my goal of going to the beach yesterday!! To give you an idea of how quickly the roller coaster goes, the above picture of me in bed was taken on a Saturday afternoon and we went to the beach on a Sunday afternoon! So to go from barely walking or lifting my head from the pillow to CAREFULLY walking down a steep decline to the beach — that’s a big deal.
Let me just say that my trip to the beach was a dream come true.
But the ride keeps going. Up and down, up and down. The point is, though — the ride WORKS! The motor runs, the cars go. So goes the body.
Of course, there are other treatments going on here – the laser bed, Global Diagnostic scans, lymphatic drainage,
and nutritional counseling — he said he highly recommended an anti-Candida diet which, if you are familiar with this problem, you will feel very sad for all I need to give up. BUT it will allow me to get better. Candida is yeast overgrowth all in your body and makes one VERY sick. We’ve always known my gut has been trashed. I’ve talked about this in many previous posts. And 70% of our immune system is in our gut so if the stem cells are going to wipe my old slate of an immune system clean, I better get my gut in order. That is why I decided to get an extra stem cell injection into my gut.
Yes, at the doctor’s strong recommendation and after talking to many former, now-healthy patients who got that extra injection – and after a financial miracle within 24 hours, we were able to garner the money needed for this extra boost. This gut injection will give me an even bigger advantage to getting better. So THANK YOU.
I just started week 2 today. Hard to believe that in ONE DAY I will receive my new stem cells.
In my next blog post (most likely written AFTER I receive the stem cells) I will go into how I receive them and what happens next.
Until then…take heart, friends. I have the utmost confidence in Infusio. They are on the leading edge of so much, it’s unbelieveable. My body feels it already. My spirit knows it.
My hope is that the CDC will acknowledge chronic lyme disease for what it is and treat it appropriately. That funding will go to places like Infusio and so many other cutting-edge doctors and clinics. My hope is that the general public can be educated on the REALITY of this epidemic and not just the fallacy that this is a well-maintained little illness controlled by 30 days of antibiotics. My hope is that people will open their eyes to their own mysterious symptoms and do their research.
I feel 100% confident that I am in the right place. And please keep in mind, this treatment I speak of is something I am choosing for me after much research and prayer. I am not a doctor and am not giving out medical advice. These are my opinions.
But if you ask me if I believe in this? I do.
Also…if you know me at all…
up next in future blog posts:
I hope you will tune in!
A Literary Magazine that gives platform to writers and artists with invisible illness.
Staying grounded while recovering from Lyme disease
A journey back to who I am
A Blog About Living with Lyme Disease
My journey in getting treatment for Lyme Disease
Advocacy is FREE and its never-ending ripples spread awareness for all worthy causes!
A Lyme Disease Blog from Bruce county ontario
Recovery from Lyme Disease, chronic pain, and fatigue
How the light gets in.