Robyn lives a couple hours away from the Infusio clinic in Los Angeles, so she’s been able to have in person, follow up appointments since her 100 day mark earlier this year. She emailed me an update on July 28th, which included a detailed recap of what’s happened in the 10 months since her treatment in Germany. I will also include the links to her previous updates at the bottom of this post. Here’s Robyn’s most recent update:
Treatment dates: September 21 – October 2, 2015
I know everyone is hopeful about Infusio’s stem cell protocol. Unfortunately, at 10 months post treatment, my symptoms have NOT improved and continue to be chronic insomnia, chronic daily headaches, and fatigue. I’m sad that the blood stem cell treatment did not work. I’ve restarted a Chinese Herb protocol as per Dr. Sara of Infusio. Here is my summary. I hope it helpful to someone else.
Consultation to 10 Month Summary Post Infusio
July 2015: Consultation with Dr. Philip at Infusio, Beverly Hills. The Global Diagnostic showed a “2” for Borrelia2 (they test for Borrelia and Borrelia 2) . “2” for Babesia and “2” for TBE (Tick Borne Encephalitis). I had been on antibiotics, Ceftin, Azithromycin, Plaquenil, and Mepron for 4 years. For 2 of those years I was added the Buhner protocol herbs. I was on all of these during the Global Diagnostic Consultation. Most of my systems were heavily taxed including my immune system. I went to Infusio Germany in late September 2015 for the 10 day IV treatment and stem cells treatment. The stem cell treatment extracts your stem cells from a pint size blood drawn and grows your stem cells for a week, in a culture.
- I stopped all antibiotics and herbs 2 months prior to arriving in Germany.
- I did 11 shots of Thymus prior to arriving in Germany. I had another 10 shots of Thymus while at Infusio.
- I had 605,000 stem cells harvested from my blood
- 7 days later, after growing in a culture, I received 2,740,000 stem cells back via injection in my upper left arm
- Jen here, I thought it’d be helpful to share a couple other stem cell recipients counts after one week. From what I understand the more that grow in a week, the better the outcome.
- Me: Original amount of stem cells harvested was 1,390,000. Dr Michael said the “vitality” of my stem cells was at 90%, which is lower than average, most people have a vitality of 95%. After one week of culturing, the vitality increased to 100%, and my count increased to 5,220,000. He said the that amount is higher than they usually see in women, and was a good sign.
- Richard: Original amount of stem cells harvests 700,000 and after one week, his increased to 5,000,000. I’ll try to get stem cell counts from others and update this post later.
Post Infusio Updates
- January 22, 2016 – 113 days post stem cell treatment: Global Diagnostic showed a “1” for Lyme and “0” for all other co-infections. I was encouraged but I still had severe fatigue, daily migraines and chronic insomnia. I was getting 4 -5 hours of sleep a night with herbal and pharmaceutical support. I was told not to take any supplements other Vit. K2, digestive enzymes, and thyroid medication.
- May 6 and 7, 2016 – 7 months post stem cell treatment: Global Diagnostics scan showed I had a “4” for Borrelia, a “1” for Babesia, a “1” for Borrelia, and “4” for Borellia 2 and a “4” for MycoPlasma. Dr. Philip said it wasn’t “raging lyme” but was the cyst form showing (notice that the Global Diagnostic showed the different strain of Borrelia than the month before). Dr. Philip said my immune system knows what to do and he recommended the 10 pass ozone for extra support.
- The next day (May 6, 2016), I did a 10 pass Ozone, the laser photon bed, and cold laser on my shins and sternum. Following treatment, the Global Diagnostic scan showed ”0” for Borrelia, “1” for Borrelia2, “0” for Babesia, and “2” for MycoPlasma.
- June 3, 2016, – 8 months post treatment: Global Diagnostic showed Borellia as a “4”, Borrelia2 was “0”, Babesia “2” and Mycoplasma P. “1” and Mycoplasma L was a “2”.Over the past 2 months, my fatigue had worsened, my migraines were still daily, and I had chronic insomnia. I was now having anxiety attacks, outbursts of rage, depression, daily heart palptations, and air hunger similar to prior to being diagnosed with Lyme. I received treatment through the Global Diagnostic machine, laser photon bed, and cold laser on my shins and sternum. Dr. Sarah, put me on their Borrellia tincture. I added some Buhner Herbs that weren’t in the tincture.
- July 22, 2016 – 10 months post treatment: Taking the Infusio Lyme Tincture and Buhner Herb Protocol for 1 month and my energy is improving some. My headaches are daily and I’m doing acupuncture. My insomnia continues. I get about 4-5 hours of sleep nightly but wake up several times. I take 100 mg Trazodone +15 mg Temazepam + 500 mg Phosphytidlyserine + Calm (magnesium). Other herbs such as melatonin or hops don’t seem to help and may make sleep worse.
- My diet is organic, mostly gluten and sugar free. I don’t have any digestive issues or food allergies, including gluten. I take digestive enzymes, fish oils, collagen powder, vitamin B complex, and glutathione daily. I have done a lot of emotional work. My biggest stress is dealing with this illness and the insurance companies. I cannot hold a job due to chronic insomnia, fatigue – especially post exertion such as cleaning the house or going to lunch with a friend. I pace myself during the day to spread my energy throughout the day, although I’m usually exhausted by late afternoon and unable to do much at night. I continue to have difficulty watching TV as the quick motions make my brain spin.
I see Dr. Philip in August and we will see what his plan is for me. I haven’t read many long-term success stories.
As always, I’m extremely grateful for Robyn’s willingness to continue to share her story even if Infusio has not been as successful as she hoped. I think it is important to share all experiences, as it helps other make a better educated decision on if treatment at Infusio is right for them. Here’s the links to Robyn’s previous updates:
After Infusio – 30 Day Update – November 8, 2015
After Infusio – 100 Day Update – February 15, 2016
August 15, 2016 at 9:28 pm
Robyn, I’m so sorry to hear that your health has not improved following your stem cell treatment in Germany. Our symptoms sound very similar and I myself did not experience any noticeable improvement (with the exception of a few weeks directly after the trip) following the treatment in Germany. I wanted to let you know that I had moderate success with an IV treatment called the ‘PK Protocol’. I noticed some improvement in general (somewhat more energy, more consistent sleep, a decrease in my body-wide joint and muscular pain), though my headaches and migraines remained unchanged. After several months of this protocol, though, I noticed that I was not continuing to improve. I am no longer using this protocol as it is quite expensive and I was never able to get past this plateau in my health.
Most recently I have been doing an anti-Candida diet (aka Candida Control diet) and have noticed quite a bit of improvement in my energy and sleep patterns! I’ve even been able to drive myself to the store (for the first time in over 3 years), go to knitting club with my grandma, help my cousin with some back-to-school shopping, etc. This is UNHEARD of for me. I have been housebound (and often bed bound) for 3.5+ years. There are many versions of the anti-Candida diet But I used the one found in a book called Sinus Survival by Dr. Robert Ivker. I am fortunate in that Dr. Ivker is only about 20 minutes away from me, so he is the one who suggested and walked me through the diet and supplements. As far as supplements go, he had me take a garlic supplement called Allimed (2caps three times per day for 4 weeks, then 1cap three times per day for 1-2 months. The active portion of the garlic is called Allicin.), a supplement called Candisol which breaks down the yeast’s cell wall (2caps twice per day (morning and night) WITHOUT food), a good probiotic with at least 25 billion CFUs (twice per day on an empty stomach). The whole idea is to starve the yeast that had taken over the GI tract because of the crazy amount of antibiotics used to treat Lyme. Even if you have been diligent in taking probiotics throughout your antibiotic regime (and I was!), yeast can quickly take over. The yeast can grow into the lining of your intestines which creates microscopic ‘holes’ of sorts (leaky gut), allowing portions of food and other ingested substances to leak into your bloodstream which sets off a body-wide inflammatory response! In addition to this, Candida can release 79 different toxins into your body which, as you can imagine, wreak all sorts of havoc! As with Lyme, killing off the yeast in large amounts causes you to feel much worse before you feel better (a herx from all those nasty toxins). To help combat this, my doctor recommended that I get a colonic 1-2 times per week for about 6 weeks. This will help clear out large amounts of yeast and their toxins. I had never had a colonic before but I did find them to be helpful throughout this treatment, especially since I also have MTHFR and do not methylate/detox properly on my own. This may be too much information, but I was actually able to see large pieces/colonies of Candida being expelled during my colonics! After a month of the diet and supplements I went on a short camping trip with my family where I was not strict about my diet (I had banana bread, marshmallows, brownies, fruit, and other no-no items) and noticed a HUGE difference in how I felt. It took me about 5 days to recover! Needless to say, I’m back on the diet again and feeling like I was prior to the camping trip.
I’m sorry about the length of this comment, but I wanted to let you and others know what is currently helping me…just in case it can help someone else as well! I still have a ways to go until I’d consider myself ‘healthy’ or ‘normal’, but this is the closest I’ve been in years.
I hope this is at least a little bit helpful and I wish you the best of luck on your journey! We’ll be going through it together 😊. I am headed to Seattle in a couple weeks to meet with some new doctors (on the recommendation of my LLMD) to see if we can figure out why I continue to hit plateaus.
August 15, 2016 at 9:45 pm
Kaylie, THANK YOU so much for this comment and sharing this information! I am so glad to hear that you are feeling better and found the root cause of one of the things that was keeping you from feeling better.
It is interesting that the dioxychlor they give everyone at Infusio didn’t kill off the candida.
Thanks again for the update, it was great to hear from you!