By 2018, everything was difficult - walking, talking, swallowing, driving. A double vision (diplopia) was impacting my vision along with nystagmus and ocular dysmetria. I also have dozens of floaters in each eye. The progression of symptoms was relentless with no breaks and never seeing any improvement.
iVIG (Intravenous Immunoglobulin)
For several years, I had been taking prescribed tests and working with doctors to file insurance applications and appeals for the iVIG infusion therapy that Dr. Tavee had recommended I start 'right away' years prior (2015). With iVIG, they extract immunoglobulins (antibodies) from hundreds/thousands of blood donors, and infuse the antibodies slowly into the recipient via IV.
On my 5th application/appeal and just when I was at the end of my rope, my insurance company approved the therapy! I started in June 2018, and it worked! For the first time, I was seeing the regression of symptoms at the end of 5 days of therapy. I was really going 'downhill' when I started so the regression was so welcome. I am still doing iVIG, but I am now going for 2 days a month versus 5. I am not seeing the same improvement at this lower dose, but I do believe that it is slowing my progression and helping me to 'hold even'.
iVIG is created by extracting IGG antibodies from donor blood and infusing them to recipient. It is used to treat a variety of illnesses including auto-immune. It does not seem clear as to why it works, but I look at it like it is replacing your immune system and reducing my own body's attack. It is very expensive, and it is understandable (though unfortunate) as to why insurance is very reluctant to approve.
The therapy is not 'easy' and I suffered side effects such as severe headaches at the beginning and a probable case of spinal meningitis. And, it is very expensive, and the insurance coverage was critical for me.
iVIG is helpful for a wide variety of conditions including auto-immune diseases. The mechanism of action is unclear. It will not help with all causes of Ataxia, but if your cause is auto-immune or 'idiopathic' (unknown), it may be worth a try.
While I was waiting for insurance approval, I decided to try anything and everything that shouldn't hurt me and might help me. Since I knew my condition was neurodegenerative, I was particularly interested in treatments which might stimulate neuronal growth.
I read two books by Dr. Norman Doidge on this subject, and I highly recommend (Doidge Book 1 and Doidge Book 2). The books describe many therapies and the successes patients have had. The therapies met my 'do no harm' philosophy and included things like essential oils, sound therapy, neurofeedback, physical therapy techniques, magnetic therapy, light therapy, and more ... a potpourris of things for me to try.
I've tried many essential oils, but I haven't noticed a change. One day at the gym, someone came up to me and shared his miraculous story of healing. He had been confined to a wheelchair for many years, and he said a friend prayed for him and used essential oils, and he was walking when he woke up the next day, and he is perfectly well today.
A Religious Healing?
A friend offered to pray for my healing and conducted ceremonies which had helped others. While I was grateful to my friends for trying, this did not result in any improvement for me.
I've tried many things that may fall under the umbrella of magnetic therapy. I have read at least one study describing the benefits of TMS (Transcranial Magnetic Stimulation) to benefit Ataxia. TMS is FDA-approved for the treatment of medicine-resistant depression. But, the protocol for Ataxia is to direct the magnet at a different part of the brain than for depression, and the doctor would not or could not treat me for anything besides depression
I tried this magnetic chair at a chiropractor's office. The device sends a strong magnetic pulse through your chest. This therapy yielded some potential, and I need to try this further.
Another time at the gym, someone came up to me to share that his father was able to break free of his walker through a PEMF mat (Pulsed Electro Magnetic Frequency). So, I bought a mat that emits a low-level magnetic field, far-infrared heat (emitted through crystals), and red lights. While this mat is relaxing and I do feel that heat is good for detox, I do not think the magnetic field is strong enough or directed enough (like the red lights) to make a difference for me. I did get mild headaches when I first started so I take this as an encouraging sign that there is/was an effect.
I've also tried bio-magnetic therapy, I am not sure how this works, but I suspect magnets are placed on acupuncture points for stimulation. This did seem marginally helpful, but I stopped going when the COVID pandemic started, and I'll restart soon.
Speaking of acupuncture, this is something I do roughly once per month. While I do find it relaxing, I put acupuncture in the camp of something that helps my overall health so I have the strength and energy to fight Ataxia.
Recently, I started trying something called TaoPatch. The TaoPatch was invented in Italy about eight years ago and came to the U.S. in mid 2020. Many people with MS have seen improvements with the patches. You tape the patches to your skin at different acupuncture points. The patches convert your body heat to low-level light energy. I liken it to a combination of a more 'permanent' acupuncture and light therapy. I have seen some benefit, but it is a slow process for me.
Chiropractic / Massage / Sitting in Sun
I have been going to the chiropractor roughly once per month for many years. This is in the same camp as acupuncture.
I've been getting a massage every two weeks for a couple of years. And, I sit in the sun for twenty minutes a day on sunny days - free sauna in the summer. These two things are some of the more favored things I do for Ataxia, but they just keep me healthy and geared up for my fight.
I met Bob Cafaro at a Wahls seminar in Iowa, and I bought his book 'When the Music Stopped'. I loved reading about his own battle with MS. He fought very hard, and he helped me to feel less neurotic about my own battle. I was inspired to fight harder, and I picked up new ideas.
One thing Bob did was to drink copious amounts of water. I thought this was something I could add to my routine. I read 'Your Bodies Many Cries for Water' for further inspiration, and I increased my uptake.
Another thing Bob described was his use of meditation. I had already started meditating twice per day, but I started visualizing the growth and healing of my brain, and I continue this practice today.
Time for Healing
All of my healing practices are very time consuming, and there are not nearly enough hours in a day. I've had to figure out how to multi-task. For example, I might meditate while sitting in the sun.
tDCS or transcranial direct current stimulation is another practice linked in a study showing benefits for Ataxia. With tDCS, you use a device to apply a 'mild' electrical stimulation to your brain and back. I've found a routine allowing me to lie on my PEMF mat while doing tDCS and a form of meditation or self hypnosis. I was seeing slight improvement with tDCS but not cumulative; I am now relying on the TaoPatch for a light but continuous stimulation.
LDN (Low Dose Naltrexone)
About six years ago in 2015 (before my illness was readily apparent to others), a friend suggested I look into LDN. At the time, I thought I was fairly knowledgable about alternative medicine, but oh my, my eyes were opened. I had never heard of Naltrexone or LDN, but tens of thousands were taking LDN. Naltrexone is a drug approved many years back (and now out of patent) as an opioid blocker. It can help someone recover from an opioid overdose by blocking the receptors (and thus the high and negative effects. It can also be used to help people recover from addictions. Naltrexone is made in 50mg pills. LDN is compounded, and the dosage is reduced to 4.5mg or less. Because the drug is out of patent and compounded into very low doses, it is quite inexpensive, and no insurance coverage is necessary. Because there are no drug rep's educating doctors about, most doctors have never heard of it.
But, LDN is used for a wide variety of conditions from Aids to cancer to auto-immune to anxiety and much more. LDN is generally taken at night. The philosophy is that it temporarily blocks opioid receptors (like for two hours in middle of night) and this 'tricks' your body into increasing its production of endorphins. So, your body and health can benefit from the additional endorphins without having to run marathons.
Side effects seem to be minimal and includes things such as more vivid dreams at beginning. I'm not clear on the benefits, but my thyroid antibodies went down to 'normal', and most of my brain lesions disappeared after I started the LDN. I can't be sure if LDN is to credit, but I've had no side effects so I continue.
Ampyra (or Fampyra outside the U.S.) is the brand name known as the 'walking drug' for MS. Like many medications which may be helpful for Ataxia, it is FDA-approved for MS. It is sometimes prescribed for Ataxians, but it is rarely approved by insurance. Ampyra is produced in 10mg, time-release capsules.
Dalfampridine is the generic manufacture of 'Ampyra', and it is more often prescribed and covered by insurance. It is less than Ampyra but still quite expensive for those doing self pay. And, many MS patients find good results with the Mylan manufacturer but not the others.
4-AP or 4-Aminopyridine is the compounded version of this medication and is far less expensive. It can be compounded into different strengths and into standard release or timed release. For example, I am currently taking standard-release, 7mg capsules 3x/day.
All of these medications must be prescribed.
I took timed tests (like a walking test) before and after starting this medication. And, I am glad that I did because my response was to walk quicker (about 15%) which I would not have noticed without the timed test. But, at the beginning, my walking was sloppier, and it took some time for my muscles to catch up with my new speed. Without the test, I likely would have stopped early. I've also measured a similar impact with the speed of my speech.
Hydroxychloroquine (aka Plaquenil)
Hydroxychloroquine is the generic name for the medication sold under the brand name Plaquenil. It was made famous as the drug frequently touted by Trump for COVID (not supported by studies). The medication does seem to help auto-immune diseases such as Lupus and Rheumatoid Arthritis though the mechanism of action is unclear. With my condition seeming to be an unknown auto-immune disease and the relatively small risk of side effects (though there are some), my doctor prescribed a small dose. I'm not sure if this is helping, but I am continuing in case. It can take months for this drug to take effect or leave your system, so it is very hard to measure results.
A friend noticed that my symptoms worsened around the time of menopause, so she speculated that estrogen might be playing a role. Since Estrogen is known as a neuro-protective hormone. So, I have been taking estrogen and progesterone. It is very difficult (perhaps impossible) to measure a neuro-protective effect, I am not sure if these hormones are helping. But, they don't seem to be hurting.
Physical Therapy / Exercise
Many with Ataxia are helped by physical therapy and/or exercise. I am going to physical therapy once per week and 'walking' laps in a pool for two days per week.
Since mold seemed to initiate my illness, and my urine mycotoxin tests were high, I have worked extensively on mold detox with Dr. Bauerschmidt at Deeper Healing. Dr. B said that my mycotoxin levels were indicative of either a current/ongoing mold exposure or an internal colonization. So, I had my current house tested, and it did not seem to be the source. Rather, as I suspected, I had colonization from my mold exposure from 2003 to 2008. As a result (I believe), I was frequently gasping for air over recent years.
So, my mold detox protocol has included taking liquid glutathione, Lauriciden, and nebulizing twice a day with a combination of silver hydrosol mixed with two drops of Biociden. Through the course of the detox, my breathing has improved. My Mycotoxin levels are lower, but not gone, and I am due to test again.
I've done many other things to detox, and I am in a perpetual state. With Dr. B, I have also done many circuits which have included Live O2, the Juvent vibration plate, and an infrared sauna. I have also tried Ultraviolet Blood Irradiation.
Vitamin D Therapy
I've joined a couple of MS (Multiple Sclerosis) groups on Facebook to learn about 4-AP and the TaoPatch. Through these groups, I learned about two things which have stopped (and often reversed) the progression of their MS illness - HSCT and the Coimbra Protocol.
HSCT stands for Hematopoietic stem-cell transplantation. It is a fairly aggressive procedure where they harvest your own stem cells, kill off your immune system with chemotherapy, then use the stem cells to renew your immune system. It is very expensive (like over $60,000 out of the U.S.), and it is rarely covered by insurance. However, it has like an 80% success rate with MS. Without an MS diagnosis, this therapy is very unlikely for me.
So, in putting HSCT to the side, that left me thinking about he Coimbra Protocol (CP). I learned of someone named Michael Cawley who lives in Ireland and healed his own MS through his own version of a Vitamin D protocol. His background is acupuncture and nutrition, and now he helps others through a customized version of his protocol. I started working with his guidance in February of 2021 and my associated supplements include Vitamin D, magnesium, Vitamin K2, riboflavin, and detox supplements to help with the detox of molds and heavy metals.
Through this protocol and for the first time ever, I have seen continued improvement. I have tracked this primarily through speech timings but also walk timings. For example, my speed in reading the same set of sentences (an example list of Harvard Sentences) has gone from 44 seconds down to 35 seconds with a normal speaker setting my benchmark at 30 seconds.
I've tried many other supplements over the years. For most, there is a report or study showing benefits for Ataxia or mitochondria. I will update this section with brands/links and dosages as time permits, but every person is unique and trial and error is important to assess your personal value and nutritional lead.
- Lions Mane Mushroom
- Cordryceps Mushroom
- COQ10 (Usually MitoQ)
- Vitamin E
- Fish Oil
- Organ Capsules (e.g. liver, heart, kidney)
- Melatonin (various doses, high-dose melatonin along with aceytl-dl-cysteine) has been shown to stop the progression of Parkinson's)
One day a friend told me about her own battle, and how she was healed by Dr. Kate Keville in Greenville, SC. Dr. Keville is a chiropractor and homeopathic doctor. My friend was in a wheelchair and down to 95 pounds when she went to see Dr. Keville. The doctor was able to determine what was wrong and heal my friend who is perfectly well today. So, my friend wanted me to see the doctor to see if she could help me.
At the same time, someone in one of my Ataxia Facebook groups had suffered with Ataxia for a decade, but she was fully healed by Dr. Keville in a matter of weeks.
As one to take special note of coincidences, I rode with my friend to Greenville (four hours away), and I saw Dr. Keville that day and one other. And, I have followed her homeopathic remedies. But, it is very hard to get to Greenville so I'm not sure of my best next step.
I did enjoy this book Dr. Keville wrote with a wide variety of Healing Stories.
My War Continues
One day, I hope to provide an update that my war is over, and I have healed my Ataxia. At that time, I can provide details on the things I have done that have seemed to prompt the healing. But, for now, my battle rages on. Though many things might provide a 10% improvement, the math doesn't add up like I want it to. For example, if I do 5 things that have each yielded measurable improvement of 10%, the overall improvement doesn't add up to 50% ... more like 11%. I feel like I am fighting hard to hold even. But, with this progressive, neurological illness raging on, 'holding even' is a good thing.