NEUROTOXIC DISORDERS

The infections in my body seem to be stable as long as I'm on the antivirals (high dose) and antibiotics (low dose). 

Right now my main issues are primarily neurological and toxin induced so I'll probably be focused on toxins and detoxing for a bit. 

There's some good info in this blog post written by Wayne Anderson ND (he's with Gordon Medical and Associates). 

Interesting that they are starting to look at CD57 count, typically used by LLMD's for assessing an aspect lyme disease. They are realizing the CD57 count can be used as a an indicator of mold illness.

It's worth reading the whole post and a great blog to sign up to get treatment information and updates:

Certain types of toxigenic mold can also be a major factor in neurotoxic conditions. Petrol-based pesticides, insecticides, and solvents are a third major contributor to neurotoxic inflammation. The extensive neurotoxic effects of pesticides, for example, have been well documented. Heavy metals are sludge toxins with some of the same neurotoxic effects as petrol-based chemicals. Mercury, lead, cadmium, and arsenic involve similar neurotoxic mechanisms of action and can cause similar symptoms.

Many of these intracellular pathogens proliferate very slowly, over months, years, or even decades. They gain access to the body’s cells through a simple process and can remain for years.

Step 1. Toxic build-up: Following exposure, the toxin is absorbed through the cell membrane and penetrates the cell. Our own cell membranes consist of two layers of fat (bilipid), which normally provide very effective gatekeeper functions, allowing into the cell what should be allowed as a nutrient and repelling what should be rejected as a toxin. However, because the pathogens also contain lipid molecules, they confuse the gatekeeper mechanism of cell membranes, penetrating the cell wall, and essentially hijacking the cell. 

Step 2. Immune reactions: The immune system is activated and tries to destroy or remove the toxins harbored within the cell, but frequently cannot do so. When the system cannot break up or destroy these microbes, inflammation results. As these efforts by the immune system become more and more intense, activity shifts from cellular immunity to antibody production. This frantic immune activity is often associated with the symptoms of autoimmune conditions. 

Step 3. Attempts at detoxification: Neurotoxins are typically detoxified through the methylation pathway. This pathway involves numerous genetic strands that all coordinate to remove waste from within the cell, through the cell membrane, to move toxins back into the bloodstream. 

If toxins build up within the cell, the cell’s function is diminished. These irritants can dysregulate the mitochondria, lowering energy production by the cell. No matter where the cell is located in the body, there will be reduced function or even lack of function. If the toxic cells are stored in muscle tissue, that may be experienced as weakness, pain, or an array of symptoms resembling fibromyalgia. If the toxins have accumulated within the brain, that will create symptoms related to functional neurological deficits such as impaired memory, cognitive processing, and brain fog, as well as mood instability resulting in depression or anxiety.

Experimenting

I'm not feeling well. At all.  This past week I've been indoors most of the time because of the weather. I wonder if that explains the recent emergence of new/old symptoms.

Monday I started getting the chills off and on but no fever. That night I had bad nightsweats. The chills have continued to today. While showering I was having chills!

I'm also having a lot of nausea which started suddenly yesterday and has persisted. Nausea, lightheadedness, feeling mildly off balance at times, and increase in POTS symptoms. I'm also have moderate muscle pain in most of my body.

Last night I had light, sound, smell sensitivity along with those lovely migraine like headaches.  I felt (and feel) like I have both the flu and a bad hangover.

I had an episode like this for one day after being at my sister's house for about 6 weeks.  It was tough and I worried I would be stuck like that. This episode isn't as bad (I couldn't look at a computer screen or the tv).

Today I have sheering pain in the muscles in the back of my legs as well as my lower back, and lower arms. It does not feel related to a disc issue.

I'm also having some shortness of breath at times.  Stuffy sinuses, dry gritty eyes, increase in fatigue.

For about 2 hours yesterday I had trouble staying upright. When the bad nausea started I headed out to the backyard thinking being outside would help. I had just been under the sink looking for a sponge. I believe the dishwasher has a mold problem (can smell it). The dishwasher is right next to the sink.

When I got outside the heat made me almost pass out. I had to sit until I felt confident I wouldn't pass out. As I started my journey upstairs to my bedroom I would take a few steps and have to sit down because of the lightheadedness and dizziness.

I emailed my doctor who suggested a biopsy for Small Nerve Fiber Disease. I looked it up and it looks like what my Dad has. Unfortunately I also have a majority of the symptoms. It has a genetic component.

I seemed to have developed heat intolerance also.

So I've been experimenting. I've taken note of my symptoms when I'm in my bedroom near the small amount of stuff left from the old water damaged/moldy apartment.

When I go outside I don't feel as bad. I come upstairs and start to develop symptoms.

How in the heck am I supposed to convince a doctor to do a biopsy when I can't even convince doctors around here that I have a real medical condition and need medical help NOT a referral to a psychiatrist.

Another link to small nerve fiber disease:

"Small fiber neuropathy has been associated with many medical conditions, including glucose dysmetabolism,³ connective tissue disease,^4,5dysthyroidism,⁶ vitamin B₁₂ deficiency, paraproteinemia, human immunodeficiency virus (HIV) infection,⁷ hepatitis C virus infection, celiac disease,⁸ restless legs syndrome,⁹ neurotoxic drug exposure, hereditary diseases, and paraneoplastic syndrome. While most of these conditions cause a length-dependent small fiber neuropathy, others (Sjögren disease, celiac disease, and paraneoplastic syndrome) can cause a form of small fiber neuropathy that is not length-dependent.^4,8,10"

Small nerve fiber neuropathies also may result in autonomic and enteric dysfunction. Patients often do not identify the relationship of these symptoms to their sensory complaints; however, when asked, they may report dry eyes, dry mouth, postural lightheadedness, presyncope, syncope, abnormal sweating, erectile dysfunction, nausea, vomiting, diarrhea, constipation, early satiety, difficulty with urinary frequency, nocturia, and/or voiding.

Interesting that neurotoxic drug exposure is listed as one of the causes. I wonder if neurotoxins produced by the mold can also cause this.

Toxin Induced Neuropathy:

Motor > Sensory Toxic Neuropathies:

1. dapsone 2. disulfiram 3. nitrofurantoin 4. organophosphates 5. lead 6. vincristine

Sensory > Motor Toxic Neuropathies:

1. cisplatin 2. pyridoxine 3. thalidomide 4. thallium 5. arsenic 6. polychlorinated biphenyls

Systemic Features Suggestive of Neurotoxic Disease

The neuropathies resulting from most neurotoxins are remarkably similar in both their clinical and electrophysiologic characteristics. Occasionally, there may be systemic complaints or signs which suggest the nature of the neurotoxic insult. Usually these symptoms/signs are apparent with either acute high-level, or chronic low-level intoxication. The following clinical characteristics may be the identifying feature that suggests a TxPN:

- acrylamide - dermal contact associated with contact dermatitis, excessive sweating of hands and feet.

- carbon disulfide - chronic low-level exposure associated with a variety of behavioral and psychiatric abnormalities along with peripheral neuropathy.

- ethyl oxide - cognitive impairment and neuropathy with prolonged low-level exposure.

- hexacarbons - acute, high-level exposure may mimic AIDP with prominent autonomic dysfunction.

- lead - Mee’s lines, blood abnormalities (basophilic stippling, anemia), GI abnormalities, and predominantly a motor neuropathy.

- mercury - tremor and ataxia with a predominantly sensory neuropathy.

- methyl bromide - corticospinal and cerebellar dysfunction along with an axonal neuropathy.

6- organophosphate intoxication - early cholinergic symptoms, may have intermediate syndrome preceding neuropathy, late emergence of corticospinal tract dysfunction as the peripheral neuropathy resolves.

- polychlorinated biphenyls - symmetric sensory neuropathy associated with brown acneiform skin eruption and brown pigmented nails.

- thallium - prominent GI distress with high-level exposure, alopecia, Mee’s lines, hyperkeratosis with more prolonged exposure, sensory greater than motor neuropathy.

Incompetent Doctors

I've been living here 3 months now and I can say for sure that it sucks. I knew it wasn't going to be ideal and I knew the living situation I was going into wasn't going to be ideal great but I didn't expect what I got.

I love the bedroom and the acre of land, the chickens, and the fact that it gets really warm.

My roommates are not warm though. They are a couple who clearly do not want a roommate. They want the money but that's about it.

I asked about water damage and mold and was told no mold nor water damage/leaks. In fact, they own the house and one of them rebuilt it so I thought I was safe.

I'm not. As I was going down the stairs last week I could smell mold. The laundry room reeks of mold. The dishwasher smells like mold as does the kitchen sink.

And there's that dripping sound in the wall when I use the hot water. As I'm living here I can see how much the owners have neglected things that can result in water leaks.

Ever since moving here I've been trying to find a doctor and a psychiatrist. I was able to get a doctor's appointment for today. I had waited 2 months for this appointment. I did all the usual preparation.

I anticipated some skepticism regarding "cfs" but I didn't expect the hostility I was met with once I told him my diagnosis.

He hassled me on every single friggin medication I was on except for the gabapentin. He refused to fill my medications saying there is nothing wrong with me.

He said the reason my heart beats fast (POTS) is because I'm too thin. Ha!  I told him I was diagnosed when I was 40-50 pounds heavier (I'm 5'8 and weigh 119).

He proceeded to tell me that what I needed was a psychiatrist. I said great! He said but none of the psychiatrists in our system take Medicare so "here's the number to community clinics" see ya.

I told him that in all my years of being sick that I had never been hassled about my medications and illness like I was today (well the optometrist was also bad and weird about cfs) and then I did the ugly cry in spite of trying not to.  I'm not on any narcotics. He was upset that I'm on clonopin, flexeril, antibiotics, and antivirals. He said it was inappropriate and dangerous.

I told him I'm having severe back pain with sciatica going down my left leg and that I'd had back surgery in 2006 and that epidurals help. He refused to refer me for an epidural, refused to prescribe NSAIDS (told me to take Advil which I can't do for long because I have GASTRITIS).

I told him about toxic mold. He didn't believe me.

When I said I'm bedbound without the medications he sneered and said it wasn't because of any REAL illness.

I've been so isolated since moving. I thought living with people would ease that but its actually made it worse. Being pointedly avoided wears on a person's spirit.

I can't get any help in this shitty town.

So I'm bailing. I found someone who will buy my car. He said he needs to wait one more month which would have been fine but I need to leave sooner than later. A second guy is interested so I'm going to contact him on Thursday.

It's time to move on and it might be time to do something radical-like get a cargo van and convert it or an old U-haul and convert that and live a mobile lifestyle.

All I know is I can't tolerate much more of this. I have to do something differently.

Oh, the local paper had a series of articles on the higher than average rate of depression and suicides in this area along with reports of toxins in the environment.

"Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome"-Study Results

I've landed temporarily about 2 hours east of where I used to live. I'll post an update soon. In the meantime here's an interesting article.

That they found mycotoxins in 93% of ME/CFS patients is significant and can point towards another avenue to pursue in terms of treatment. Thirty percent have more than one mycotoxin present in urine.

Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome

Joseph H. Brewer ^1,* , Jack D. Thrasher ² , David C. Straus ³ , Roberta A. Madison ⁴  and Dennis Hooper ⁵ 

Abstract: Over the past 20 years, exposure to mycotoxin producing mold has been recognized as a significant health risk. Scientific literature has demonstrated mycotoxins as possible causes of human disease in water-damaged buildings (WDB). This study was conducted to determine if selected mycotoxins could be identified in human urine from patients suffering from chronic fatigue syndrome (CFS). Patients (n = 112) with a prior diagnosis of CFS were evaluated for mold exposure and the presence of mycotoxins in their urine. Urine was tested for aflatoxins (AT), ochratoxin A (OTA) and macrocyclic trichothecenes (MT) using Enzyme Linked Immunosorbent Assays (ELISA). Urine specimens from 104 of 112 patients (93%) were positive for at least one mycotoxin (one in the equivocal range). Almost 30% of the cases had more than one mycotoxin present. OTA was the most prevalent mycotoxin detected (83%) with MT as the next most common (44%). Exposure histories indicated current and/or past exposure to WDB in over 90% of cases. Environmental testing was performed in the WDB from a subset of these patients. This testing revealed the presence of potentially mycotoxin producing mold species and mycotoxins in the environment of the WDB. Prior testing in a healthy control population with no history of exposure to a WDB or moldy environment (n = 55) by the same laboratory, utilizing the same methods, revealed no positive cases at the limits of detection.




Brewer JH, Thrasher JD, Straus DC, Madison RA, Hooper D. Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome. Toxins. 2013; 5(4):605-617.

A Hummingbird Story (part II)

I've had hummingbirds around me ever since. It has been a source of comfort for me seeing these fragile yet strong beings.

For the past 6 weeks or so I noticed the absence of hummingbirds. I couldn't figure out what happened. I always look for them and usually hear and see them so this absence was puzzling. I missed their presence.

They are amazing creatures with rich symbolism.

Anyway, I became increasingly concerned that I wasn't seeing one. I have some major decisions to make and was looking for a sign.

I was standing in my kitchen one day and heard a hummingbird.

She was sitting on a branch of a tree just outside the window. She was hidden so I had to look for her. I grew concerned because not only was it a poisonous tree but there was a bunch of mold all over the ground along with standing water that had been there for weeks.  She would appear at that spot for a few days.

What I didn't know was she was pregnant and searching for a place to build her nest! Last weekend I took the trash out. I paused near a tree and felt and heard the whir of a hummingbird flying past me. Something about her behavior clued me in that there might be a nest near. 

And there was! Here she is feeding her babies and then sitting on the nest to warm them.

 Every day I would go outside just once to see make sure she and her babies were okay. Each time I would go look she'd sit silently nearby on a branch watching. I felt like I was being let in on this wonderful miracle of nature.  I would pray all throughout the day that they would make it.

Today I went outside to check on the nest and found it turned sideways. There were no birds. I was heartbroken. I didn't know if the wind did it or maybe they hatched and flew away.  I kept going back searching for some clue that they survived but found none.

I don't know what happened to the baby hummingbirds but I choose to believe they survived.

This afternoon I went outside and heard a hummingbird so I looked up and there was a little hummingbird flying sort of sideways. He/she was either sick or it was a new hummingbird still unsure of his/her wings.

A Hummingbird Story (part I)

I have a special relationship with hummingbirds starting two weeks after my mom died. I thought I wrote about it somewhere on my blog but I couldn't find it.

Briefly, my mom had a short bout with a very aggressive cancer that killed her 44 days after she was diagnosed. Those 44 days were precious and terrifying, tragic and deeply spiritual. Things got very simple. It was all about living in the present moment.

During those 44 days I would sit with my mom every night as she fell asleep. I would watch her reading her book. The cancer had metastasized to her liver by the time she was diagnosed. She felt extremely fatigued and weak as a result but she loved reading her book. She would try to stay awake as long as she could. I watched as she'd start to doze off, the book falling. I'd gently pick the book back up, put it near her hands in case she woke up again and then would sit for an hour while she slept. During that hour I prayed for a miracle.

During that time I would often find myself wanting to ask my mom if maybe she could send a sign letting me/us know she was okay (after she died). Because she loved hummingbirds that is the image that would appear in my mind. But I never gave voice to those words because I knew my mom was fading fast and I didn't want to use up any of her time talking about my wish to know she made it safely to Whereever.

There is a backstory. Two Christmas's before she died I decided to make everyone in my family a stained glass thingie. Because my mom loved hummingbirds I decided to make a hummingbird for her. They took longer to make than I'd anticipated. It was close to Christmas and I was working on my mom's. It was the last one I had to do. When I was trying to fit glass in the chest area of the hummingbird the glass broke. I didn't have any other color to use except for red glass so I put the piece of red glass near the throat and chest area of the hummingbird. I'd never seen a hummingbird with a red chest area so I hoped my mom would like it and she did.

Two weeks after my mom died I was sitting outside on the front porch talking to a friend on the phone when a hummingbird appeared in front of me. My friends voice faded into the background as I watched transfixed by this beautiful hummingbird hovering about 18 inches away as if she were trying to communicate something. She had a red patch on her chest.  I knew she was from my mom and burst into tears.

My Toxic History

I've temporarily changed the title of this blog. A few weeks ago (maybe longer) I was talking about how badly I need to move out of this toxic apartment but that I didn't have help and that I was restricted because I couldn't drive far. I was in contact with quite a few people (with this illness) who would inevitably ask "How far can you drive?" and my reply is/was "Three miles at a time".

These past two months have been, and continue to be, intensely reflective. I have pulled away from almost everyone while I decide what my next steps will be.

I've been in denial about how much mold, pesticides, and certain mysterious chemicals affect me. Seeing how much my functioning has decreased since being since being back in a moldy environment has been an eye opener.

I've gone from being able to do 10 loads of laundry, cook, go to the store, walk Chelsea, and socialize to being in bed 80% of the time. When I first moved here I would take Chelsea for a walk 5 times a day plus other activities. Now my legs are so weak I'm unable to walk around the block without stopping (especially my left left leg and especially below both knees) It has nothing to do with deconditioning. I'm so fatigued after I get up, take meds, and make breakfast that I have to lie down again. I cook one meal and make it last the next 4 days (quinoa).

Since moving to this apartment I have had a toxic chemical exposure (Chevron fire), had my car partially flooded by some underground creek (it smells like mold and has condensation like crazy), and am living in toxic soup. All in seven months.

I found out the previous tenant complained about mold and told the landlord. This was told to me by the property manager who was recently fired.

I remember when I looked at these apartments. It was a beautiful sunny day and people were milling about. My sister and I first looked at the studio that was advertised. As soon as I walked in and took a couple steps I had a strong visceral feeling to GET OUT. I glanced around the apartment noticing how messy it was as well as the smell of gas. The property manager was grumpily telling someone that the previous tenant had a family emergency and left unexpectedly.

As I heard him talking I looked in the bathroom noting the previous tenant's toothbrush. It was if he left thinking he was going to come back. The family emergency story didn't fit with what I was observing but that faded into the background once I saw the 1 bedroom apartment. It wasn't fantastically cute or anything but it was cute and in a great location central to everything I need.  And they would take a dog. Awesome. I moved in three weeks later.

I noticed that I felt okay in the apartment except when I looked at the kitchen. It felt dirty to me. So did the back porch area. I also noticed a strange musty odor. It didn't smell like mold or mildew just....odd and......... funky.

Interestingly enough I forgot to look under the sink. Big mistake. The dry rot was so bad it looked as if the bottom of the cupboard had melted (it had a thick coat of paint on it). The back area that I didn't like? It's covered in mold from the rain and dampness. The back porch, the steps covered with a coat of pretty green mold. During the spring and summer it was dry and clean.

What I didn't know was the previous tenant in that studio didn't have a family emergency. He had been on dialysis and died of kidney failure.

And that flood? It was the creek as well as sewage. It entered the garages of the apartment building leaving the floors covered in thick stinky slime. The whole area smelled faintly of sewage. It entered the area via a large crawl space underneath my bedroom. The sidewalks outside the front of my apartment are still stained.

But that's just the past seven months. I have worked in so many water damaged buildings. I didn't know it was bad for me. I think of one place where I worked where we had buckets in various places to catch the water. I remember trying to get the agency I worked for to pay for a new roof for one of the residential programs I ran. They didn't have the money and declined. A year later one of the residents had an asthma attack in the middle of the night and died.

In 2006 my then partner and I moved into an apartment in the bay area. It smelled moldy to me and I commented that something didn't feel right (I had no idea about mold back then). She really liked it and other than the odor and my gut feeling there wasn't any other reason to not take it so we moved in.

I was diagnosed on 11/2/2007 with ME/CFS. Later that year I found out I was living in an apartment that had toxic mold hidden in the walls. The only sign of any problem was condensation on one of the windows and mold around the calking of that window. Here is the mold report (in case the link doesn't work it's November of 2008). By December I was housebound.

In the 80's the bay area had a problem with medflies. So they sprayed the area with malathion and some other substance all the while reassuring everyone that it was safe. They did mention that people should stay inside on the nights they sprayed. The helicopters would fly all over spraying this pesticide like they were pouring water on a fire. In the morning my car would be sticky with the residue.

Malathion is an organophosphate and can affect the nervous system. One symptom is trouble swallowing. Right around the time they were spraying I had my first episode of a pill getting caught in my throat. Thank God my mom was there because I could not swallow, breath, or ask for help. Suddenly there I was standing in front of her motioning to my throat. She initially thought I was joking until she saw that milk was coming out of my mouth because my throat had closed. Realizing I was in trouble she jumped up and started doing the heimlich maneuver on me.  It was one of the few times I ever saw her cry. 

There is so much ignorance and misinformation regarding the consequences of mold/pesticides/chemicals.

According to Dr. Shoemaker 25% of the population has genes that make them susceptible to mold and/or lyme (I happen to have the dreaded genotype making me multisusceptible). He also states that 50% of housing has toxic indoor air. My guess is that figure is closer to 85% in low income housing.

These are some reasons why the past two months have been intense. I have a decision to make. I don't know-am I going to be someone who cannot remain functional living in conventional housing?