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This is a message to all about a thoroughly under and misdiagnosed, yet severe health issue. If you are a vegan, vegetarian, raw foods fanatic, have or have had a lot of stress in your life, are getting older … (should I continue?), you should read this?

 

It is also about a condition that is caused by many different and unrelated illnesses.

 

And it is also a story of ongoing healing and recovery, of research and perseverance and maybe you or someone you know can benefit from this story and the information contained within.

 

In August of 2009 I was in the final phase of consulting on a project in Bermuda - a new spa opening for a resort. I was unusually tired and my energy level was low,but I wrote it off to the recent flu, our young baby, the death of my father and more and as many of us usually do, I pushed myself through the fatigue, opening date and to-do list in mind.

 

In the days that followed our arrival in Bermuda, walking and lifting was becoming increasingly difficult and I continued to write it off as stress-related, temporary and soon-to-be-over with the end of the project and my departure and following sabbatical. Usually a hands-on person, there was less and less I could physically do – quite a handicap on a project like this. The last few days I was dragging myself up the stairs using the handrail, pausing every two or three steps and taking an elevator wherever I could.

 

The project ended and we got on a plane to California. We had planned a 24-hour layover in Los Angeles on the way to Hawaii to have an extended vacation with our then 6-month old daughter. By the time we landed in LA, I could not lift our bags and could hardly walk, the weakness and lack of sensation was progressing up my legs and arms and I was experiencing a lack of coordination when walking (later termed “ataxic gait”), numbness in hands and feet (stocking and glove paresthesia) and incredible fatigue. At times I could not stop yawning. Things were getting serious. I cannot say how lucky I was that my sister-in-law who picked us up in LA had just started her residency at LA General Hospital and after a quick look at me, decided I needed to get to the emergency room ASAP to see what was going on.

 

Hopitalization
On August 25th I was admitted to the ER at LA General. This was the first time in my life I had every been in a hospital as a patient and thankfully I had been instructed what to say to even get admitted into California’s largest emergency room hospital. It did not take too long and I had a needle in my arm with nurses coming by regularly to take blood and send it off to the lab.

 

Diagnosis
To cut to the chase, after scores and scores of blood tests, spinal tap, painful nerve conduction tests and many questions, lying in the ER until on day 3 they transferred my to the Neurology department, the doctors came back with a final diagnosis and two possible reasons. The diagnosis was “acute demylinating peripheral neuropathy”.

 

Peripheral neuropathy describes damage to the peripheral nervous system, the vast communications network that transmits information from the brain and spinal cord (the central nervous system) to every other part of the body. Peripheral nerves also send sensory information back to the brain and spinal cord, such as a message that the feet are cold or a finger is burned. Damage to the peripheral nervous system interferes with these vital connections. Like static on a telephone line, peripheral neuropathy distorts and sometimes interrupts messages between the brain and the rest of the body.

 

The two possible reasons – both had sufficient indicators to be taken into consideration - were first, Guillain-Barré syndrome (GBS). GBS is a rare inflammatory disorder in which the body's immune system attacks the protective covering of the peripheral nerves (myelin sheath), preventing the nerves from sending signals to the muscles. It can develop over the course of several hours or days, or it may take up to 3 or 4 weeks. It is the most common cause of rapidly acquired paralysis.

 

The second was B12 deficiency. My level was at180 pg/ml, which is low. In the US the minimum level is 200, while in other countries such as Japan a level below 500 is considered too low. A lack of B12 damages the myelin sheath that surrounds and protects nerves. Without this protection, nerves cease to function properly and conditions such as peripheral neuropathy occur. Even B12 deficiency that is relatively mild may affect the nervous system and the proper functioning of the brain. The nerve damage caused by a lack of B12 may become permanently debilitating, if the underlying condition is not treated.

 

Healing options
Whether it was the first or the latter, did not really matter since what is more important is that I had sustained severe damage to my nervous system and the prognosis was that while the symptoms might get better over time, I should accept that there might well be some permanent damage.

 

My first message is that, even if you are living a healthy life, and you are experiencing one of the wide range of symptoms that are caused by malfunctioning of the peripheral nervous system, get your B12 level checked. Do research and be persistent with your doctor. If you need resources contact me. It is a very common deficiency that remains often undiagnosed.

 

GBS has no known treatment. In classical Western medicine, physicians address some of the symptoms but you would only want to undergo the treatments if you were about to go on a ventilator or were becoming completely paralysed - and even then the success rates are limited. Intravenous immunoglobulin and Plasmapheresis are the two treatments they try with severe cases.

 

I was released from the hospital in a wheelchair with a word of caution to return if I had trouble breathing! The final diagnosis was B12 deficiency, but I think they might have just chosen that because they were able to do something by giving me B12 shots and writing a prescription for additional self administered shots - daily, then weekly, then monthly. No harm done.

 

The B12 shots had little to no effect. So here I was with little to no knowledge of my disability, a prognosis of likely permanent nerve damage, a 6-month old child I could not even lift up, not to speak of the psychological issues I had to deal with – oh and then of course the financial part too. One of the most challenging issues was the lack of being able to concentrate for any significant length of time, which was particularly bothersome while trying to understand they technical and medical terminology surrounding my illness. It was a very hazy time.

 

There was no sense in traveling to Hawaii at this point. Not only did we not know if I would have to return to the ER suddenly but the healthcare in Hawaii was sketchy and besides, I could not drag myself for more than a block.

 

We sublet an apartment in LA and I started researching my options. I knew two things: First, that nothing was permanent and that my cells were renewing themselves consistently and that secondly, I could and would not accept that this remain the condition I was to spend the rest of my life in.

 

My first instinct was to find an acupuncturist to see what another approach would do since the B12 shots were really not cutting it as well as to find out how they treat nerve damage in other parts of the world. The progression of whatever I had that was causing the nerve damage has significantly slowed down by this point in time. The damage was slightly affecting my ability to swallow and I had tingling between my shoulder blades. My mood-swings were significant and one of the hardest things to deal with as it seemed I had no control over them

 

Starting the healing process
My first order of work was to make sure I did not get worse and that the side effects would not debilitate me even more.

 

Because I was not able to walk properly, I could feel the atrophy in the muscles predominantly my legs at beginning to start and knew I needed to work at that. Having a longstanding yoga practice I started doing what modified poses I could trying to at least slow down the attrition. Of course most of this was on the floor.

 

Next I figured I needed to make sure I was getting enough oxygen into my bloodstream if any healing were to happen and started daily breathwork sessions – sometimes yogic breathing techniques, sometimes what some call holotropic or accelerated breathing.

 

I also spent as much time as I could focusing on healing by bringing my attention to where I imagined the damaged nerves were and sending energy in that direction. Even if it was only minutes at a time, I felt it made a difference.

 

I found an acupuncturist and did sessions every other day including blood cupping during which the doctor punctures the skin with a kind of stapler and then places a vacuum cup over it to draw out stagnant blood. Quite a painful procedure and very odd to look at what they pulled out, but something definitely shifted in terms of tension (of which by this time I had plenty).

 

After 15 sessions I felt that I had reached the limit of what this practitioner could do. Besides that at $80 a session, it was tearing a hole in my wallet, not to mention having to rent in LA and eat out all the time.

 

I also found that in Germany they were treating peripheral neuropathy caused by diabetes with high dose injected Lipoic acid, an antioxidant that is said to bind free radicals and preserve cell function among a bunch of other things. One of the articles is here (in German) .

 

While in the study they gave it as an injection (600mg), I figured taking pills would be better than nothing. I finally found R-Lipoic acid, which I researched to be a more effective form at a vitamin store and started taking a pretty high dose every day.

 

I also started taking a general vitamin supplement. I had never taken any supplements since I assumed that the fresh variety of whole foods I was eating should supply me with everything I needed.

 

After two months in LA it was at least not getting worse and I was pushing through my yoga exercises and getting better at coping with the symptoms, making my life a little easier but far from normal. We decided to use frequent flyer miles and fly to Bali. Not only was the cost of living substantially lower, but we would be able to afford help with the house, childcare and I could focus on continuing the healing process. I could also get acupuncture at a much better price which helped to keep my energy levels up and my mood stable. Unfortunately the treatment only lasted about 12 hours and then I would take a dip again.

 

I joined groups and lists and read everything I could get my hands on. After 3 months I ran out of the B12 shots I had taken with me from LA and although they were not contributing to a healing process, I felt they were at least not allowing it to get worse.

 

To replace the injections I ordered two different kinds of sublingual B12 after hearing good things about the absorption as well as some complementary supplements I thought would be useful in the process such as Omega Oils, L-methylfolate which the body uses to reproduce DNA on a cellular level, a general vitamin B supplement.

 

In the mean time I was not really concerned with the original cause of the neuropathy but more with healing the nerve damage. I needed to make sure that my body had everything it needed to rebuild the nerves and nodes that had been damaged or died off. I am currently adding Zinc, Magnesium and Calcium to my regimen.

 

I continue to add and experiment with supplements to encourage the healing process.

 

Status
Nearly a year since the original hospitalization, I am happy with the results. I have no issues with strength, or any tingling or pain in my hands, my mood-swings have evened out and my overall health has improved. If I do not get enough sleep, get too stressed or walk long distances, my feet start to tingle and burn. I am currently focused on healing that part of my body.

 

My intention is to share my experiences with those suffering from similar conditions hoping they too and relieve some of their symptoms and completely heal themselves.

 

Results
Peripheral neuropathy is a common result of many different types of illnesses from rare autoimmune responses to diabetes and toxic poisoning. Each area with their particular experts are looking to moderate the symptoms, but there is hardly any exchange of results between the fractions. Different countries have different diagnostic benchmarks and allow and pursue different healing plans and practices.

 

I believe that this particular kind of nerve damage can be healed with the help of a positive attitude and understanding of the body’s capacity to heal as well as with addition of the proper elements that are needed to restore function to the nervous system. It pays to research the different approaches and think outside the box.

 

Action

1. If you are experiencing symptoms that you cannot pinpoint -check your B12

2. If you are told something that is wrong with your body is permanent, don't believe it.

3. If you are dependent on labor-based income, consider supplementing with residual income to reduce your risk of bottoming out financially if you are unable to work. (I will write more on how I approached this issue in the next newsletter)

 

Nicolay Kreidler

Email: director@spa-college.com