A recent experience of a MCS attack and treatment outcomes

Over this last weekend, I had the misfortune to be exposed to someone whose clothes had been exposed to an auto oil-based air freshener, it could have been Febreze or some other brand. My wife was immediately effective. I was not — until the second day of exposure. I have had only one other incidence of MCS reaction in my life, and that was some 12 years prior. Having suffered from it once, I believe it is a very real condition.

Day 1: exposure – no effect
Day 2: re-exposure. following happen at about 2 hr intervals…
  1. Suddenly chilled, even in a warm room – I had confusion about why?
  2. Bronchial issues started appearing (i.e. IgE response, klaxon went off that it could be MCS reaction) – I immediately left the exposure area
  3. Noticeable cognitive issues
  4. Gut cramping, difficulty swallowing(throat was constricted significantly)
  5. Significant physical clumsiness (some nice bruises from the clumsiness)
  6. Disorientation, lack of focus
Day 3: Took some racetams (3 different ones) and anti-fibrins, anti-inflammatories. Detox with Olestra chips. I felt like I was living in a different body, mind was extremely scattered, did not feel normal, etc
Day 4: Kept up the above — dizziness, lack of mental focus continued. Attempted to do WII fit. On Day 1 I did over an hour with no problem; today, barely did 20 minutes before I had to sit down. Played against the computer for backgammon — instead of winning 90% of them, I was loosing 100% of them.
Day 5: Recall that I had significant improvement of cognitive issues with Neem and Tulsi, so I started taking 3 “00” capsules of one of them every two-three hours. Soon after taking them, had chills again, etc — I chose to believe that it was herx and that part of the MCS reaction was due to gut bacteria. Gut cramping also returned for about 1 hr.  After some five rounds, my cognitive abilities felt normal-ish. I was winning at least 50% of the backgammon. I could do 40 min of WII fit without any problem.
Day 6: Sleep in, sluggish. Once I had coffee and a WII fit session, I was close to normal. Slightly scattered (easy to loose focus).
Day 7: Awoke at usual time, a very little bit of sluggishness, much less scattered. Keeping on task and focused well – still not up to my usual standards, but close enough others do not notice.
This was not a control experiment. I do not know if the recovery would be the same if I had not taken Neem/Tulsi.  I am shifting my belief about MCS towards it having a significant gut bacteria component. The model of these synthetic chemicals being misinterpreted by the immune system may still apply, but these chemicals may also be acting as signals (or signal interference) to gut bacteria growth rate.
I do not know if this may also apply to asthma and food allergies, but I suspect it may be worth investigating.

A primer on Multiple Chemical Sensitivity for those unfamiliar with it

With the holiday season comes family gatherings, and with that — some challenges with MCS. Some of you family members that do not get MCS fully. MCS is an allergy but with one key difference: it does have have the pronounced IgE response that MDs normally see with allergies.

MCS is very much like a peanut allergy. “Oh, I cannot taste any peanuts in this food — so it is safe for Johnny to eat”. “Oh,  I can’t detect any smell so it’s safe to be around Mary” or worst (showing your ignorance) “It’s a psychological response to the smell” or better still “Johnny’s allergic response is psychological to the taste of peanuts and is attention seeking!”

MCS is not “smell base” – it is not multiple smell sensitivity or multiple fragrance sensitivity. It is sensitivity to certain modern synthetic chemicals. Often the chemicals are those used by the fragrance industry (and thus are not listed, or just listed as ‘fragrance’).

MCS impacts the brain

Recent studies have found that a MCS attack results in changes of SPECT brain scans:

MCS is in the brain, in the physical brain and not a psychological issue.

Symptoms

First, what is MCS symptoms – the department of Education disagrees with many MDs and believe that it is very real

From US Dept. of Education policy letter (2001)  (paper)

  • asthma or other breathing problems
  • autoimmune disorders
  • behavioral problems
  • bloating or other intestinal problems
  • cardiovascular irregularities
  • chronic exhaustion
  • disorientation or becoming “lost”
  • dizziness
  • dystonia (paralysis)
  • eye, nose and throat problems
  • fatigue and depression
  • flu-like symptoms
  • food allergies and intolerances
  • genitourinary problems
  • headaches
  • increased sensitivity to odors
  • inflammation
  • irritability
  • learning disabilities
  • mental confusion
  • movement disorders
  • muscle weakness and joint pains
  • numbness and tingling in limbs
  • persistent infections, especially yeast
  • persistent skin rashes and sores
  • seizure disorders
  • short or long term memory loss
  • visual disturbance

“Both the US Department of Housing and Urban Development (HUD) and the Social Security Administration (SSA) have recognized MCS, in some cases, as a disabling condition.”

The next question is to understand a bit about MCS — Studies from 1985 onwards has found that about 30% of people that have an allergic response (IgE response) also had coagulation triggered. If you look at most of the above symptoms, you will see that many of them are consistent with excessive coagulation happening: mental confusion, learning disability, irritability, etc

  • “This represents the first demonstration that cutaneous IgE-mediated allergic responses are associated with local activation of the intrinsic plasma coagulation-kinin pathways.” [1987]
  • “A patient presented with coagulation problems a few days after honeybee sting….She manifested signs of hypotension with disturbance of consciousness” [2004]

MCS can lead to transient ischemic attack and in rare cases to strokes, because of the massive coagulation produced. MCS attacks do not respond to anti-histamines (which is the normal treatment to allergies) because the IgE response is not dominant; coagulation is. Like with all allergies, if a person has had a recent attack, they may be hypersensitive for up to a year after a reaction. The “memory” of the reaction is carried in cells that have a life expectancy over 6 months. It is suspected that the epigenetics of a person changes due to the reaction.

If you are visiting with someone with MCS

There are simple rules that need to be followed precisely:

  1. Read this site on MCS
  2. Toss out every freshener in your house and car NOW.
  3. Toss out “Bounce” and every other type of dryer sheet and fabric care sheet
  4. Toss out everything that says “Unscented” – typically this means that a chemical has been added to mask the scent
  5. Do not use aftershave or perfume for at least 3 days before visiting
  6. Run your dryer on hot(not warm) for 3-6 cycles to drive out residue chemicals
  7. Use only Fragrance Free Laundry Liquid (for example biokleen) and wash the clothes that you are planning to use:
    1. With Laundry Liquid
    2. With vinegar
    3. With Laundry Liquid
    4. Store in a plastic bag until worn away from the rest of your clothes, ideally, outside.

If you cannot do this, then please contact the person and tell them you cannot be MCS safe and tell them what you are doing – assuming you are willing to do something more than just token steps (I would suggest it is said in an email — if it is not a long email describing many things, then a wise MCS person will simply say “forget it (and silently think: if they care so little for me — then the contact is not worth it)”.

There is no such thing as “I thought it would be ok” with MCS. If it is a family event, then the decisions become tough. If you are not willing to do it, then you need to decide: “Am I going to the event, or are they going to the event”  — it is an either/or.

If you decide to go, tell them and be frank and tell them you will not be MCS safe. End of story. End of visit for them likely. It is not a matter of them “inconveniencing you”, it’s a matter of putting their life at risk. You are giving a kid with a mild peanut allergy something that may be cross contaminated with peanuts (just a very little!) – you could be very luck and there is no response, mildly lucky and he has a mild reaction, or he could go into anaphylactic shock.

Black Friday/Cyber Monday Sale on Piracetam

I just got this via one of my regular suppliers. Piracetam is often hard to find.

Piracetam 800 mg 120 capsules (MSRP $34.99) $15.39
[Click here for a direct link:
http://cts.vresp.com/c/?CognitiveNutritionIn/98f757b7a6/db3f9b3f5f/0b026d451d/dispatch=products.view&product_id=60&utm_content=ken%40lassesen.com&utm_source=VerticalResponse&utm_medium=Email&utm_term=Text%20Version%20-%20Link%202&utm_campaign=Black%20Friday%20Nootropic%20Sale]

This is cheaper then the $25 for 60 capsules I paid back in 1999 from the Czech republic.

 

Multiple Chemical Sensitivity: Model of What it is, and treatment experience

Multiple Chemical Sensitivity has been an unwelcomed visitor at our house for 15+ years. During those years we have reviewed most of the literature and tried various treatments. This post summarizes our model of what it is and some possible ways of treating.

Bogus chemical signals of pending infection

Often CFS has been described as an unregulated immune system; an immune system on heighten alert. We assume that this is correct and that the chemicals being reacted to are mistaken as chemicals being produced by attacking infections. The body goes into defensive mode which includes trying to contain the infection until it can prepare appropriate antibodies. Containment means preventing the infection circulating — restricting blood vessels (often by inflammation)  and producing coagulation. These responses will typically produce headaches, nausea.

It has often been said that many CFS patients are sensitive or allergic to alcohol. My own experience with willing CFSers has been that alcohols with complex aromas (beer, wine, whisky) produce a reaction while others being favored pure alcohols (vodka, gin, ouzo) did not. In fact, the CFS could drink them without apparent ill effect. This appears to confirm the above model.

Our own personal experience of MCS causing coagulation came from full coagulation panels before and two weeks after a MCS exposure — the measure of the amount of active coagulation (a measure with a half life of 45 minutes) went from normal range to 6 standard deviations above normal.

We have also observed that the duration depends on whether the chemical is water soluble or fat soluble. A water soluble chemical typically flushes thru the system in a few hours. Many fat soluble chemical may persist for days or weeks!   Fat soluble chemicals are often preferred in perfumes because the scents will persist for the entire day or longer. This latter type is very nasty for MCS suffers.

The problem for recovery is getting the fat soluble chemicals out of the system. Fortunately, modern medicine has looked at removing some fat soluble chemicals from humans — typically PCBs. Items like oral activated charcoal have not been proven effective.   “Cholestyramine therapy, sauna bathing, and fasting have all been attempted and have proven unsuccessful (AAP 1999). In fact, PCBs stored in fat can be mobilized by the patients crash dieting.”[CDC]

I would never do this if there was an alternative…

” Now olestra may be set to take on a new role: as a way to rid the body of toxicants such as dioxin and polychlorinated biphenyls (PCBs).” [2005] Which is echoed in a variety of articles:

Getting Olestra is a bit tricky, you will never find it in a health conscious food store. In fact you will find pages on the web stating “Do not eat these products” – which fortunately tell you what products have it — like this one! Today, we depend on Walmart to have Olestra chips reliably available.

Our experience has been that Olestra chips greatly reduces the duration of a MCS reaction. It is nasty stuff — but it is the only thing available with proven benefits.

Phosphatidlylserine: A review and alternatives for cognitive improvement

Phosphatidlylserine is commonly used to help with cognitive issues in Alzheimer’s Disease and other memory issues. According to Mayo clinic “improvements in memory lasted only a few months and were seen in people with the least severe symptoms.” Because chronic fatigue syndrome often manifest with memory issues, some MD’s may speculate that it could help with CFS. I encountered memory issues last time around with CFS and my SPECT scan was read as early Alzheimer’s disease by the radiologist (neurologist that I subsequently saw disagreed about Alzheimer’s).

So, a CFS MD suggesting that as an experiment seems reasonable. A check of pubmed found the following:

  • Phosphatidylserine – 13700+ hits
  • Phosphatidylserine chronic fatigue syndrome – NO hits
  • Phosphatidylserine fibromyalgia  – NO hits
  • Phosphatidylserine Parkinson – 22 hits
  • Phosphatidylserine Alzheimer – 78 hits
  • Phosphatidylserine brain trauma – 17 hits, none examined the impact of phosphatidlylserine supplementation.
  • Phosphatidlylserine supplementation – 136 hits

The most relevant article that I could find was Fish oil supplementation alters the plasma lipidomic profile and increases long-chain PUFAs of phospholipids and triglycerides in healthy subjects [2012]. It implies that taking fish oil may be as good as phosphatidlylserine. Since there has been no published studies that found that phosphatdylserine is low in CFS or FM, IMHO, the prescription of such to CFS patients is highly speculative.

My own experience

Taking Neem and Tulsi (6 – 00 capsules of each per day) causes a dramatic change of cognitive functions after 7 days.   The choice of those two was based on the overgrowth of certain families of bacteria reported from Australia and the effectiveness of Neem and Tulsi as good or better than conventional prescription antibiotics reported in Indian studies on PubMed.

Before I went on disability last time around, I found that I could moderate cognitive issues with the following items (until the anticoagulant impact resulted in easy bruising).

  • Piracetam (and other Racetams)
  • Grape Seed Extract
  • Fibrinolytics (dissolves fibrin): Nattokinease, Serrapetase, Lumbrokinease
  • Anti-inflammatories: Boswellia(Frankincense) , Myrrh
  • Turmeric

Recent Experience

I’m working at present as a Principal Software Engineer for a pre-IPO company with 40% growth/year. This last week has been — well — hectic and stressful, with four deployments schedules that were messy and with complications.  I was actually surprised on how well I handled this week with no cognitive fade out and actually awesome focus compared to several prior weeks. What I took everyday was actually a pretty simple and a short list.

  • Multivitamin with Mineral
  • Double dosage of Lactobacillus Reuteri (at bed time)
  • Ashwagandha (2 – 00 capsules per day) – morning
  • Piracetam (2 x 800 mg) –
  • 500 mg of Niacin (flushing variety)

I know that Ashwagandha acts as an antibiotic against some gut bacteria, although the original reason that I took it was as an adaptogen to moderate the stress response. The Reuteri is the most common lactobacillus in health mammals. I do not know how others may respond to this mixture. For me, after a week, I still find that cognitive function appear to be improving more — in small ways,  but detectable.