Helped by an Herb: A CIDP Journey

Jeff Clark ND

January 8, 2024 Update

Happy New Year everyone. May peace and prosperity find each and all. For those facing health and physical challenges, may your world be accessible and your treatment plans be available and effective.

I am blessed to say that all of those wishes so far apply to me. Since stepping out of the front lines of the battle for fair treatment for my profession, I have been able to recenter and find daily internal peace. Age-wise I cross an important number this year, 65. Suddenly everything retirement is facing me down. In 2022 I thought I might be disabled and collecting social security by now. Instead I find myself with a growing naturopathic medicine practice with added new tools and insights. More and more I’m delivering benefit for chronic health problems especially affecting my age peers as we all continue on the path of aging out of this life. More about that below.

My current physical state is that I continue to regain strength in my legs. I’ve quit using my cane in many situations, but always keep it in my car for when I enter public areas with lots of people. My coordination is improving, but frequently I feel like a toddler learning (relearning actually) to walk. If I concentrate and am not having a bad day, I can appear without disability to the casual observer. On a bad day, I just take the cane and no one gives me a second look. The conclusion of my November visit with my MD neurologist is that I am “stable” according to the neuro-electrical tests. Very much stronger in all the in office push pull, nerve function tests.

My treatment plan remains steady. I’m taking ursolic acid extracted from Rosemary herb, 900mg 3 times a day. At each of these doses I also take fish oil and sunflower lecithin to maximize digestive uptake. This continues to be my main treatment. In addition to these doses I’m having a Near-infrared (NIR) PhotoBiomodulation (PBM) treatment most weeks. My NIR PBM treatments are focused on the cell bodies of my peripheral nervous system. Except the face, all these cell bodies are located along the spinal column making them extremely accessible to deep penetrating near infrared light. I also take daily multivitamins, and pursue a time restricted carbohydrate diet. Not eating carbohydrates past lunch time has cleared up my prednisone caused pre-diabetes. Since my last update I have also been experimenting with daily low dose methylene blue. My perception of this off label drug is that it has greatly improved my thinking, ability to start new tasks and complete tedious ones. A new tool for me to also apply to the cognitive health of my aging patients.

I’ve been using all of these same tools with the patients that have come to see me for help. NIR PBM has been providing significant help to those with long covid brain fog, traumatic brain injury, and cognitive decline, and of course those with neurological dysfunctions. Arthritis and other connective tissue pain have also been responding well to NIR. If its cloudy, slow or hurting, put NIR on it! My NIR suite now has 6 units with 12 treatment heads allowing significant coverage of the entire body.

Adding ursolic acid to the treatment plans of persons living with Multiple Sclerosis has produced examples of significant improvement in function and well being. With MS we have only added adjunctive treatments. MS patients I’ve so far encountered are all on a biologic or other immune suppressive therapy. I see no compelling reason to change that when they are stable and tolerating their allopathic treatment plan. Our naturopathic treatment goals are to complete the anti-inflammation picture and to encourage remyelination and nerve regeneration. Progress is mostly noted subjectively by the patient. With improvements in neuro function tests being the main objective measurement available — though subjective on the part of the clinician conducting them. MRI can only detect further deterioration of nerve tissues. No further deterioration is its own indicator of progress, together with nerve function tests allowing us to at least claim “stability.” Removal and diminishment of already present lesions detectable by MRI is not on anyone’s list of expected outcomes from any treatment plan. Many thanks to the neuroplasticity potential in all of us that can grow and work around these scar tissues in the brain.

My own treatment of my own CIDP is in contrast to how I am approaching my MS patients. I’m 100% on an alternative treatment plan for my CIDP. High dose prednisone and plasma exchange failed me. There are no specific identifiable antibodies in the case of me making me extremely reluctant to compromise my entire immune system in our current times based only on speculation.

IVIg and SQIg infusions are a lifeline, and remain the standard of long term care for most patients with CIDP. Leaving me reluctant to bad mouth those treatments here or anywhere. Nonetheless, these are treatment plans that come with a high burden of inconvenience and discomfort with significant financial cost ($100’s of 1000s per year). I’ve never said no for myself. I’m still delaying until the need for a new treatment approach becomes apparent. Alternative treatments are very much working for me as of now. So far, so good.

To 2024, to health, prosperity, peace, and well being for all!

July 1, 2023 Update

Happy Summer 2023 to All

In my January 2023 account of my health journey I promised to write an update mid-year on how my treatment plan was unfolding. Lets get the big reveals out first. My function and well being are greatly improved since January. But I’m not “cured” or in remission, as I believe the disease process is still lurking. If I skip doses, or prolong time between treatments I’ll talk about in a bit, I can have periods of days that seem worse. I’m also not “recovered” as I still have neurological defects that are obvious to me and anyone watching me moving around. Next is a review of what I’ve been doing to manage my condition aiming for both a remission and a recovery.

Current Treatment Plan

At the beginning of April 2023 I stopped taking Cellcept (mycophenolate mofetil) after 5-6 months of being faithfully on the drug at the prescribed dosage. My over all wellbeing had seemed off, and I was curious how much the drug was contributing to my slow but sure improvements in leg function. So I did a trial stoppage. The very next day my perceived wellbeing was better, and continued to improve for a few days more, until I achieved a new normal. After being off the drug for a week I could perceive no increase in disease process, nor was I losing function in my legs. So the trial turned into a permanent stoppage. Except for this recounting, I have not looked back since. I continue to improve and perceive no lacking from not having that drug in my system.

In addition to daily vitamins and a fat rich diet, I’m still taking 900 mg of plant extracted ursolic acid 3 times per day for a daily total of 2700mg. A bit more than the literature says is needed for my body weight, but an even number of capsules at each dose. The product I’m taking is an extract of pentacyclic triterpenoids from Rosemary herb. Each of the 3 capsules I take each time contain approximately 300mg of ursolic acid, 150mg of betulinic acid and 150mg of oleanolic acid. Each capsule also contains 1mg of piperine extract (black pepper) to enhance intestinal absorption of ursolic acid. I take each of these doses with 1200mg of sunflower lecithin and 1000mg of DHA/EPA fish oil to enhance absorption of the ursolic acid, and to continuously supply essential fat materials for myelin repair.

Another treatment 1-2 times a week that has been helping me is Near Infrared Photo Biomodulation along my spinal column and then the fleshy parts of my legs. This is a treatment I offer in my practice that has amazing effects on reducing inflammation and inspiring healing processes through stimulation of mitochondria at Cytochrome C of the electron transport chain. More ATP, more cellular function, more cellular repair, more recovery. Busyness has had me missing this treatment more than I wish. Its been a busy spring and early summer with haying and other essential ranch activities along with an ever increasing patient load in my naturopathic practice — causing me to not have a treatment every week. I’m not sure if I’m sliding backwards when these are delayed or just flattening out in my otherwise perceived long term upwards trend.

In the past 2 weeks I’ve started an experiment with methylene blue capsules from the compounding pharmacy. 25mg per day. It definitely creates blue urine. I think it is helping, and may be multiplying the positive effects of Photo Biomodulation. When I have done NIR Photo Biomodulation since being on the drug, my sense of wellbeing the next day after a treatment is amazing.

My other steady treatment has been weekly bodywork/massage from a talented practitioner. The circulation down my legs is greatly improved, muscles are no longer tight ropey cords and therefore not adding pressure to my peripheral nerves as they surely were before.

Current Recovery Status

As mentioned above, I feel the T cell driven inflammatory disease process ( I don’t have detectable antibodies) causing my CIDP is still lurking, simmering if you want. Perking up a little when I relax the most effective parts of my treatment plan. Very likely to flare up as it has before, should I become ill for some other reason, like catching covid again, or a cold or flu.

My neurologic function is improving in all measures apparent to me. I’m definitely stronger. I can walk and carry things with both arms heavily loaded — as long as there is no more than one step involved. But I can go both up, and more recently down with some confidence. My proprioception and balance are both significantly improved — though I easily slip into ataxia when walking and therefore continue to use a cane in public. Standing to work in the kitchen for instance has a demonstrated increase in endurance. I’m able to perform duties on my feet for 20-30 minute long stretches. Whereas in January it was 2-5 minutes at most, and I simply had to sit down.

Sensory improvement is most notable in my feet which were 99% numb before. I can feel things and am very seldom having shock/surprise sensations that make me jump and call out. This reaction was from delayed nerve conduction. My bodyworker can manipulate my feet and toes without that automatic cringe reaction. My lower limb sensory input is still “cloudy” however, with the feet still worst. Sensory perception improves from toes to knees and is nearly normal in thighs. Cloudy as in there is sensory perception mixed with persistent numbness. Perception at feet maybe 40% of “normal” lower legs 60%, upper legs 80%, waist and upper body 100%.

The Big Hike!

Those who read my original account to the end know that this was a major goal of mine. In May my family gathered in Montana to celebrate my mom’s 90th birthday. While there I had on the agenda, weather permitting, a hike to the top of Mt Helena. I did 90% of the way up. The very last bit to the very top included significant amounts of loose rock on a steep incline. I’m pretty sure I could have made it up. I would likely have been on my rear end scooting the whole way back down to the better trail. “Discretion being the better part of valor”, as my father used to say — I chose to end my ascent at the saddle over the cliffs. Then to enjoy the views out across the Helena Valley. Mount Helena and those views are pictured below.

I I expect to update this personal health blog again somewhere near the first of 2024.

Mount Helena is a city park in Helena, MT. I made it to the saddle area over the cliffs. The final peak that I did’t ascend is the slightly higher point on the top left.

January 1, 2023 account

The End of Denial
One evening in February 2022 I was unable to move my right leg. In one stunning moment all denial about what I had been experiencing, stretching back at least a decade, suddenly and abruptly ended. This began my medical journey and acknowledgement of disability.

I’m a physical guy. Always have been. Over an adult lifetime my activities have evolved from hiking, skiing and fly fishing into serious gardening, cycling and small scale cattle ranching. My home is in Oregon but I am born and bred Montanan. Looking back with my newly opened eyes I can see that the occasional numbness and tingling in my feet a decade ago were the beginning of this now obvious neurological condition.  

Pre-Covid
Sometime after 2017 I would occasionally have episodes of extremely tight and cramping muscles when I was in a stressful situation. But I always recovered. I remember bicycle riding with friends and noticing that my legs couldn’t muster their umpf like they used to on a hill or a sprint. Other than being annoyed about it, I never gave it a lot of critical thought. Not in good shape, needed more magnesium, is this what happens in aging?

As 2019, 2020 and 2021 unfolded the episodes of tightness became progressively more frequent.

January and February of 2022 my legs were constantly stiff and stiffening in the evening until that night when I couldn’t move my right leg at all. 

Facing my Facts
After my episode of complete loss of right leg movement I put my face to the wind and set out to find a precise diagnosis. I’m an Oregon licensed naturopathic physician. I began working on my health problem together with one of my ND colleagues.   High dose magnesium IVs did not bring much relaxation to my legs. We started making a list of conditions that could possibly match our description of this problem of mine. This is a technique in medicine called a “differential diagnosis” or DDX. We listed what was obvious to us general practitioners to rule out first. Brain tumor, nerve root impingements, multiple sclerosis, ALS, myasthenia gravis, and more obscure conditions: “stiff person syndrome” and chronic inflammatory demyelinating polyneuropathy (CIDP).

By now it was well into March and what was described as an “emergency” appointment with an MD neurologist could be had in 6 weeks.  A non-urgent appointment could be scheduled for October. Anything sooner could only be had through a visit to the emergency department at the hospital. My ND colleague provided a convincing description of my problem in a referral letter that acquired an “emergency” appointment which would be available in late May.

Rule Outs and Treatment Trials
Meanwhile we started me up on corticosteroids, scheduled MRIs and blood tests.  Prednisone helped at first.  There were no signs of nerve impingements, tumor, MS or granulations from infection on MRI. Blood tests all came back negative for any gross abnormalities pointing towards infections and cancers, negative Lyme, Stiff Person and Myasthenia gravis antibodies specifically ruled those conditions out. ALS could not be ruled out by these means and our DDX list was getting shorter.  We tried and failed other medications along the way based on various putative diagnosis. Baclofen for instance, a muscle relaxer that is used long term in MS patients did nothing for me.

Having COVID
Then I acquired a viral infection that tested positive for COVID. I have a repertoire of herbal medicines and supplements that I’ve used with my patients and family for more than a decade with great success for upper respiratory infections. This treatment peaks cellular and humoral immune responses and significantly shortens the time of illness. I was completely through the febrile phase of Covid infection in just 2 days.  It took another 5 days to clear all the associated “gunk” and cough. I cleared Covid in record time, but at the same time my leg problems became significantly worse. I lost function to the point that I needed hiking sticks to get around the house, just to stand up on my own and work my way slowly to the restroom.

I had stopped the corticosteroids while ill and taking the immune stimulating treatment. As I was recovering from COVID I noticed the immune stimulating treatments were continuing to make my leg stiffness worse. I stopped them and received some improvement in function. Prednisone did not help as much as it did before COVID, and we upped the dose way, way up to see if we could again achieve a meaningful benefit.

Neurologist Engaged
By the time I made it to that first neurologist appointment I had lost a lot of function. I had to be driven to my appointment and needed a valet to push me down the long hallways in a wheelchair to reach the doctor’s examination room. I could walk with my hiking sticks, i just didn’t have the leg strength or stamina to walk that far.

After performing nerve tests that showed nerve conduction delays, the neurologist ordered up a battery of additional tests to rule out more subtle signs of blood cancers, HIV, hepatitis, all culminating in a spinal tap to assess my cerebrospinal fluid (CSF). Where Lyme was tested again, chem screen, antibodies and hematology were assessed. Mildly elevated above normal pressure and protein, but no white cells or other abnormal findings in my CSF. A classic picture for CIDP when combined with the nerve conduction test indicating demyelination. Everything else tested returned negative, not present.

The nerve conduction tests ruled out ALS and all that was left on my DDX list was CIDP. The neurologist proclaimed the same at our followup after the spinal tap, a diagnosis of CIDP.

About CIDP and Its Treatments
CIDP is a rare condition that demographically is biphasic, striking children and then most often late middle aged men like me.   

The primary treatment in the standard of care for CIDP is IVIg. Antibodies are collected from blood donations and made into an infusion. For 100 grams of Ig 3000-7000 individual blood donations would need to be processed for their antibodies. An extremely expensive pooled blood product where a promise of sterility is not possible. Inclusion of HIV and hepatitis viruses declared “unlikely” but not guaranteed. Ordered for me was a 200g loading dose of IvIg over a few days then 100g every 3 weeks, possibly for the rest of my life. A prior authorization from insurance was going to be required after the infusion center returned with a cost statement.  My first year was going to cost $200,000 with subsequent years $180,000 on that treatment plan. This order was sent to my health insurance to pre-approve. An approval it turns out my insurance was not eager to make.

In the Meantime
While waiting on insurance I was researching and trying things on the theoretical basis of neuro-inflammation and demyelination. My focus was on how to quell the inflammation and support my body’s efforts at remyelination.

Herbal medicine is full of substances that modify the activity of the immune system. What I quickly noticed is that anything that provoked or stimulated my immune system aggravated my condition. My ability to walk, a function with more qualitative steps between full capability and complete disability than I had previously appreciated, was my subjective measure. Anything that stimulated my immune response reduced function. My COVID remedies did that, and so did many other herbs and drugs like low dose naltrexone (LDN) that were supposed to be modulating, not strictly stimulating of the immune system. My struggle to walk worsening over 3 days on an herb or drug, then improving over night after stopping, was compelling evidence for me to declare a fail. It also pointed out an important ah ha!  Though my peripheral nervous system had suffered demyelination, the severity of my symptoms was being driven by an ongoing inflammatory process that could be caused to wax and wane.

Finding the Plant Compound
During this rapid process of trial and error I came across a plant compound that had been used with stunning success in a mouse model of multiple sclerosis. CIDP and MS share features of demyelination and neuro-inflammation. CIDP sufferers experience this in the peripheral nervous system while MS sufferers the central nervous system. 

Learning about a substance from the science literature and sourcing it in a sufficient dose quantity are two very different problems. The peer reviewed science is full of compelling research on this plant compound in cell cultures and animal models. I began to call it the “wonder substance.” I wondered why I had never heard of it before? Why big pharma had not made it into a patented drug already?

The mouse MS study specified in milligrams (mg) per kilogram (kg) of body weight an optimal dose to suppress neuro-inflammation and stimulate remyelination in mice. Calculating that for me added up to 2250-2500mg per day.

Ready to buy and consume, the largest dose size I could find was 150mg per capsule in a standardized extract of Chinese Empress tree leaves. That meant 15 capsules per day, going through a bottle of 60 every 4 days. I bought a dozen bottles and got started.

No aggravation was what I first noted. Not worse in 3 days. After a while worse only when I missed doses.  Soon I was able to stand up and slowly walk again without hiking sticks. I began looking to source a higher potency herbal extract of the compound. From a trustworthy supply chain I could only acquire it in bulk with a minimum order of many kilograms extracted from a different plant. So I bought some and started making my own capsules on the kitchen table with a small batch device. I was able to achieve 225mg of the substance per capsule by hand packing them and was down to taking 12 capsules per day, 4 at a time.

My Situation had Changed
All of this and still no word from my insurance company regarding approving IVIg. The infusion center finally called me to find out why I hadn’t scheduled with them yet. My question back was “have you received a prior authorization?” They followed up with the insurer to learn that the insurer failed to inform anyone that they did not like the specific brand of IVIg that was ordered. The infusion center re-submitted and the insurer gave prior authorization 2 weeks later.

You’ve hopefully learned a few things about me from reading this far. Had I been progressively losing function, I would have been on the phone running down that prior authorization. Instead, I had found a plant compound that was helping. I listened to personal accounts of IVIg on youtube, read the published literature, and joined a Facebook group of CIDP sufferers and their caretakers. I quickly realized that my response to the plant compound was on par with the best results people have reported from starting IVIg. There is a broad variability in responses to IVIg ranging from miraculous to nothing.

Approximately 2 and a half months after CIDP diagnosis and the prescription to start IVIg, I returned to my neurologist for followup.  I had only just received insurance authorization for IVIg and not yet started that treatment. Only now, I wasn’t so sure I wanted to do it. Prednisone had worked for a while. But I had weaned off of it soon after my official diagnosis because of all the long term risks. Good thing too, because in subsequent blood work it became apparent I had already developed pre-diabetes while on it. 

Lets Try Plasmapheresis Instead
The third treatment in the CIDP standard of care after corticosteroids and IVIg is plasmapheresis, also known as plasma exchange or plasmex for proper medical jargon. Plasmex is a procedure where your entire blood volume is circulated through a machine with a centrifuge. Only blood cells and platelets are returned, everything else in the blood is discarded. The returned cells are in an artificial plasma made from IV fluids, purified and sterilized human albumin. The albumin is also from blood donors, but far fewer donors per treatment. The conventional intent is to expel autoantibodies and inflammatory immune compounds called cytokines from the blood while preserving all the blood cells. My thought was perhaps also in my blood I had an unidentified trigger for all this neuro-inflammation. Heavy metals are notoriously difficult to excrete. Everyone has PFAS and other “forever” chemicals stuck in their plasma and to their albumin in particular. The more I thought about it, the more this treatment appealed to my holistic approach to medicine. Working with the knowns and possibilities of the unknowns, this treatment was compelling for me to try.

My neurologist was willing but surprised. In conventional medical thinking plasmex is the most invasive treatment plan because in my local health system they will only administer it through a dialysis port. This is a two-tube device that is surgically inserted under the skin over the collar bone and into the mid jugular vein of the neck ending in the superior vena cava entering the heart. I questioned out loud which was truly more invasive, installing that tubing? or infusing into my blood the pooled blood product from 1000s of donors every 3 weeks?

Port Surgery and Hospital Visits for Plasmex
Two weeks later the insurance pre-approval came through for plasmex and I was scheduled for a surgery to install a dialysis port. Then plasmex every other day for 5 treatments followed by 1 treatment a week for some undetermined amount of time.  I assumed from the start this treatment would be self limiting and not indefinite.

I have large caliber veins throughout my body, and the port install was a breeze, said the kind surgeon. For me not a lot different from the discomfort I’ve endured in dental chairs throughout my life. Then came the series of plasmex treatments at the hospital emergency dialysis ward, the only place in town where this treatment could be received. After the first couple treatments I felt lighter somehow. Unsure if this was progress or not. I completed the first five and it was clear that I had become substantially weaker. By the end I was back to hiking sticks to move around the house and getting wheelchair rides too and from the treatment room at the hospital. After a week off before the 6th treatment I had recovered enough function to be able to walk into the treatment with sticks. But at the end of the treatment I was so weak that I couldn’t walk out, I had to be wheeled.

The week of the 7th treatment I needed to take care of some things at the ranch and required as much strength as I could gather. So I got a pass and skipped the 7th treatment. After a second week in a row of recovery it was impossible to not realize the plasmex treatments were making me worse. My recovery was from what they were doing to me and not from improvement in my condition. Confounding, and it bothered my neurologist enough to question her own diagnosis when we met again. I never had a 7th treatment because I asked to stop and have the port removed.

Plasmex no Good for Me
At that next visit with the neurologist she was frustrated that I had stopped the plasmex and was concerned that if I didn’t now do IVIg I was not doing anything to treat my condition, and I was certainly going to get worse. Never mind I had just gone through a bad case of getting much worse due to plasmex treatments, now recovering from that. I assured her if I was back on a precipitous decline in function I would be scheduling that first IVIg treatment.

So what is an explanation that fits all these facts? The plant compound I had been using doesn’t absorb easily through the digestive system. It is also subject to microbial degradation in the digestive system. It takes many days and faithful dosing to achieve a plasma concentration that has an effect — is my experience. Plasmex was throwing my plasma and everything attached to it, literally in the garbage. I faithfully dosed the herb orally every day I was in plasmex treatments. It took a week away from the last treatment to recover enough strength to walk into the hospital for the next one with hiking sticks, only to be rolled out again 4 hours later. My plasmex experience is confirming, if not proving, that in the case of my CIDP, it is inflammatory T cells, and not autoantibodies that are driving my symptom fluctuations and aggravations.

Lets Calm those T Cells Way Down
So my conventionally minded neurologist has bowed to the realities of patient centered care with me, and at my request has prescribed a hefty course of daily mycophenolate motefil. This drug is FDA approved as a solid organ transplant anti-rejection treatment, but is commonly used off label in lupus and other T-cell driven autoimmune processes. The drug’s proposed method of action is that it selectively suppresses activated T cells. Stopping their cell cycle leads to eventual programed cell death and prevents them from cloning themselves. As of this writing I’ve been on the drug for about 6 weeks. It is not aggravating me. I currently perceive that it is slowly additive to what the plant compound has been doing for me all this time. It is said to take 6 months for this drug to provide its full measure of benefit.

My Status as of this Writing
I’m again walking without aids, though my children gifted me the most beautiful wood cane at Christmas. Strength is returning to my legs. I can again feel my feet when I rub them together, and my balance is improving. I have an overall feeling of wellbeing. This moment is on a good trajectory.

My prediction is that by June 2023 I’ll know my destination. How much recovery is available to me. Dare I say it? If remission is possible?

This was not going to be a cheap disease once we identified it. $180,000-200,000 a year for standard of care IVIg. I’m now spending about $1600 a year on supplements that insurance will not cover. So far it feels like an easy economic decision. Lifestyle and convenience also feels benefited from not doing IVIg. Best case a day at an infusion center every 3 weeks versus daily pills (ok, a lot of pills) that I can take with me when I travel to visit family. I have not taken IVIg off the table. It remains available, providing my insurer’s blessing is renewable. I certainly cannot afford it out of pocket. I’m just going to go down this alternative path first, and hopefully never look back.

I’ve regained a lot of function and if I don’t improve from here I am less disabled than I might have been. I’m counting my blessings and remaining optimistic. I’ll add to this narrative how I’m doing in June 2023. I owe myself that honest accounting. If you are reading this, you are riding along with me.

View from the top of the cliffs looking to the northeast.

View from the top of the cliffs looking north at another mountain in the distance called the “Sleeping Giant.” Can you see it?