I am coming out of a MCS flare at the moment. Many people have ongoing MCS flares, or MCS flares concurrent with multiple other symptoms.  Being in pretty much full remission (aka zero CFS symptoms), I believe that sharing my observations as to cause, model, symptoms and treatment may help some people.

Triggering Event

I am currently renovating our old home after it had been rented out for many years. For painting the exterior and interior, I had no MCS issues (defined as symptoms that persisted for more than 30 minutes after stopping an exposure). It was time to paint the interior and we hired someone to do the painting. They used a different brand of low VOC paint than what I had used for exterior and interior painting.

On my first visit to the house after the painting started, the fumes were thick because it had been raining and the windows had been kept closed. A slight headache which cleared after leaving. The next day, I awoke with a feeling of not wanting to go back to the house which I ascribed to not wishing to deal with the fumes.  I decided that if I open up the house quickly and worked outside, everything should be fine.

It was, running some errands etc gave me breaks. About 6 hrs later, I started to do some electrical wiring in the house but on a different floor with windows open — there was no smell of fumes that I could detect .. about 45 minutes later I knew something was wrong. Initial symptoms:

• Stomach became very acidy
• Loss of focus, easily distracted
• Feeling off

Packed it in and headed home. Symptoms continue to worsen

• Whole body aches and pain
• Deterioration of cognitive ability
• Very easy frustrated
• Sore-raw throat
• Fell asleep on the sofa about a hour later and slept very hard for 4 hours
• Massive headaches across the front of the head
• Lymph nodes swollen in the neck
• Having mildly spice food cause a major over-reaction to the spice
  • Usually, I have no problem with Extreme Hot spices…
• Sleep was disturbed — not just restless or difficult, but
  •  Many dreams that were very unsetting

On the first night after exposure, mild night-sweats returned, second night — major night sweats…

Treatment

I am on the path to recovery. First item comes from lab tests done prior to and two weeks after a MCS episode of a friend.  The marker for active coagulation went thru the roof (from high normal range (1.5 StdDev) to 7 standard deviation above the average — extremely high). Looking at the literature for allergies, you find that 30% of patients also have triggering of coagulation. This is definitely a part of MCS (and I suspect the main cause of many symptoms).

I proceeded with anticoagulation supplements:

• Fibrin Breakers:
  • Turmeric
  • Piracetam
• Antiplatelet
  •  Aspirin (and the above)

These are effective in treating reducing many of the symptoms. These will be ongoing supplements because it can take days or weeks for the increase in coagulation to reduce. This then takes me to the second part of the model.

The sore throat and lymph nodes are typical reaction to an infection. IMHO, MCS is the detection of certain chemical in the blood system that mimics chemicals produced by some past infections. The body thinks that it has detected the infection returning and proceeds to defend itself, this includes starting coagulation to slow the spread of the (apparent) infection.

A second aspect is that the chemicals are likely chemicals that the prior infections used to farm the gut bacteria — hence the stomach upset  as these chemicals triggers the residue amount of bad bacteria to go into overdrive! This response has the risk of the bad bacteria taking over — hence I proceeded to start pumping as many different types of probiotics into my stomach as I had available.

The third aspect is how to remove the chemicals from the body. There is a good chance that the concentration may actually be higher than that resulting from prior infections. I have learnt by experience that high fat food tends to reduce the concentration of these chemicals. One item, Olestra, is well documented as being the most effective substance to reduce PCB levels in the body.  On  a more humane front, brie and other cheeses will likely serve a similar function and is easy to test.

• Have some and see if you are feeling better 15 minutes later. If the answer is yes, then you may wish to blow your diet and go on a cheese diet — or be real brave and go for an Olestra Potato Chip diet (which Walmart usually carry).

The symptoms are reducing, Brie is not bad medicine! But until the chemicals clear out of the body and the activated coagulation calms down,  it is working actively on reducing symptoms and encouraging the removal of the chemicals (and prevent re-exposure) on a day by day basis.

I recall from past literature that the reactivity of the body to an infection stays high for about a year and then slowly fades — which means that I need to minimize exposures to the same chemical for a year now that the body defense mechanism has been reactivated.

Please note that studies have found that sufficient chemicals can be capture by the moisture around the eye to provoke MCS. It is not a lung reaction — if the chemical gets into your system, even in very small quantity, it can provoke the immune system to believe that it is under attack…

Readers know that my own experience was having a SPECT scan that was read as early Alzheimer’s Disease during my last flare. Remission of CFS resulted from aggressively altering bacteria. A reader just posted me a new research articles that rings true to me — because CFS has been associated with walking pneumonia in me for almost 40 years (before CFS was known). This was likely Chlamydophila pneumoniae in my case. 

J Alzheimers Dis. 2014 Sep 2. [Epub ahead of print]

Bacterial Infection and Alzheimer’s Disease: A Meta-Analysis.

Abstract

The possibility of an infectious etiology for Alzheimer’s disease (AD) has been repeatedly postulated over the past three decades. We provide the first meta-analysis to address the relationship between bacterial infection and AD. Studies examining the association between AD and spirochetal bacteria or Chlamydophila pneumoniae (Cpn) were identified through a systematic search of the databases MEDLINE, EMBASE, PubMed, and Google Scholar. Data combined from 25 relevant, primarily case-control studies demonstrated a statistically significant association between AD and detectable evidence of infection of either bacterial group. We found over a ten-fold increased occurrence of AD when there is detectable evidence of spirochetal infection (OR: 10.61; 95% CI: 3.38-33.29) and over a four-fold increased occurrence of AD in a conservative risk estimate (OR 4.45; 95% CI: 2.33-8.52). We found over a five-fold increased occurrence of AD with Cpn infection (OR 5.66; 95% CI: 1.83-17.51). This study shows a strongly positive association between bacterial infection and AD. Further detailed investigation of the role of bacterial infection is warranted.

An earlier study reported “After the first report on the presence of Chlamydia pneumoniae (Cpn) in brains of patients with AD appeared in 1998, this bacterium has most often been implicated in AD pathogenesis. However, while some studies demonstrate a clear association between Cpn infection and AD, others have failed to confirm these findings.” [2010]

The association issue failure is the classic medical tunnel vision — believing that a single infection is responsible for a single condition.  My model is that an infection by “farming the gut” will cause similar sets of bacteria overgrowth that will result in the same symptoms being reported. 

Interesting also, that antibiotics are known to slow Alzheimer’s disease. http://www.webmd.com/alzheimers/news/20031009/antibiotics-may-slow-alzheimers 

Interesting that they are also the ones that have been effective for CFS – 

“a three-month course of the antibiotics doxycycline and rifampin“

While I had active CFS, I had a SPECT scan. The radiologist read the abnormal results as early Alzheimer. “Early” does not mean starting, but before the typical age of onset. At the same time, I was having severe memory issues (since disappeared).

In a recent New Scientist article, , I read how anti-tumor necrosis factor-α (TNF-α) was being used successfully for slowing the progress of Alzheimer’s Disease.  I was not surprise because I was talking several anti-TNF-α supplements as part of my research approach.

• Histamines and Anticoagulants: Turmeric, Alpha Lipoic Acid reduced TNF
• Ashwagandha
• Boswellia
• Tulsi (Ocimum sanctum) [2014]
• Neem [many studies]

On the flip side, some foods like honey [2003] increases TNF.

Also, in my series on Crohn’s disease, many of the supplements listed were known to reduce TNF .

So if you have memory problems, you may wish to increase your anti-tnf supplements (and make sure that you check all of them to see if any increases TNF )

A reader has both diagnosis and asked me about any relationships and the complexities of treating both concurrently. I’m not a MD, but I am a tolerable researcher.

Co-Morbid Instances

My first observation is that getting numbers may be challenging because a myeloma diagnosis may disqualify many people from getting a CFS diagnosis. If the MD attributes some of the CFS symptoms to myeloma — then the CFS diagnosis cannot be done with the research definition (see symptoms in red below).

Myeloma impacts red blood cells which can result in low oxygen delivery which will cascade into symptoms also seen with hypercoagulation and thus CFS.

“Some problems (e.g., weakness, confusion and fatigue) may be due to anemia or hypercalcemia. Headache, visual changes and retinopathy may be the result of hyperviscosity of the blood depending on the properties of the paraprotein. Finally, there may be radicular pain, loss of bowel or bladder control (due to involvement of spinal cord leading to cord compression) or carpal tunnel syndrome and other neuropathies(due to infiltration of peripheral nerves by amyloid). It may give rise to paraplegia in late presenting cases.” From Wikipedia

WebMd says “Multiple myeloma is a blood disorder related to lymphoma and leukemia, because it usually arises in the bone marrow. There is no cure for multiple myeloma, but treatments are available that slow its progression.”

There is an increased risk of cancer with CFS,  CFS-Ireland gives a nice list of studies, and the original Incline Village outbreak had a high incidence of cancer.

Mechanism?

We know that many cancers are associated with a virus, we also know that virus can alter gut bacteria (effectively farm it to support the virus). There has not been (that I could find) a specific virus associated with Myeloma.

At this point, if you have an apparent double diagnosis I would suggest trying to verify that CFS is likely, to do this, I would strongly recommend:

• A SPECT (not MRI) scan — which should show major issues in 80% of cases
• A Microbiome analysis — which should show almost no E.Coli and the typical shifts seen with CFS
• Vitamin 1-25 (not the regular Vitamin D) – which should show very high levels

If you are not positive on at least 2 of the above 3, then the CFS diagnosis is probably (95%) false.