Friday, February 19, 2016

Treatments with Unobtainium

"Unobtainium is a highly desirable material that is hypothetical, scientifically impossible, extremely rare, costly, or fictional, or has some of these properties in combination."  --Google

On the occasions that I can read, I read a lot of science paper abstracts and journal articles.  I learn about all sorts of potential cures that sound fantastic on paper.  However, I see very little if any movement towards these cures actually being developed or if they are developed they aren't available in the US.  It makes one wonder if the BigPharma has a stranglehold on the market and doesn't want us to have cures that don't involve popping pills.  Hum.....

Conspiracy theories aside, here are three unobtainium treatments:

1) Phage treatment for gut infections
This involves the use of a virus that is bred to take out specific strains of bacteria, C. diff for instance, while leaving the regular gut bacteria untouched.  This is a huge benefit since the health of our microbiome is tantamount to our overall health.  Since there is a possibility I might have Whipple's, which is a weird rare bacterial infection of the gut, I would greatly benefit from phage treatment if I tested positive.  The current treatment for Whipple's is IV antibiotics for several weeks followed by 1-2 years of treatment with doxycycline.  I can't imagine the damage to the microbiome from this treatment regimen.  UGH.
Clearing Gut Infections by Jyoti Madhusoodanan   The Scientist Jan 1, 2016

2) Vagus Nerve Stimulation
I've been reading about this one for a while.  I've long suspected vagus nerve involvement with CFS/ME possibly even a viral infection migrated into the nerve itself causing inflammation.  Anyway, there have been great results in fibro patients with vagus nerve stimulation with many patients going into complete remission.  Although there are subcutaneous stimulators that are implanted like a pacemaker via surgery and also noninvasive stimulators that clip to the ear lobes, neither one is available in the US.  The subcutaneous ones are in the US but only for seizure disorders and of course the easy peasy noninvasive clip ons are only available in Europe. Geesh!  Proven tech that isn't allowed in the US.  If I could travel I would take a medical trip to the UK to get my hands on one of these puppies.  WTF!?!!?  So much for the US being the center for medical excellence.  
Vagus Nerve Stimulation, Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) by Cort Johnson Health Rising Jan 11, 2016 
3) Hyperbaric Oxygen Treatment
Again proven not only to relieve pain in fibro patients but also to reverse brain damage caused by the illness.  Most doctors will NOT prescribe this treatment.  You would think that with the CDC taking away our opioid meds they would allow this safe effective pain treatment to become standard but no.  
Hyperbaric Hope for Fibromyalgia Sufferers by Mike Williams Rice University Jun 2, 2015 
 Hyperbaric Oxygen Therapy Can Diminish Fibromyalgia Syndrome - Prospective Clinical Trial by Shai Efrati et al  PLOS One May 26, 2015 

Tuesday, February 16, 2016


Why oh why do I HATE showering so much?  I used to like showers but not since I got sick.

Is it because:

  • it wipes me out just to prep for a shower; gathering towels, setting up the shower chair, fetching shampoo or soap, disrobing, combing out my hair, etc
  • i hate showering in a shower chair; spots get missed
  • it uses up tons of spoons to get clean; all that scrubbing and hair washing
  • i now have to shampoo my hair several times to get all the oil out of it
  • i have to use all sort of concoctions to get rid of the armpit stink
  • i almost alway run out of hot water before I'm finished
  • i can't reach everywhere that needs soap
  • the cat is slowly ripping apart my scrubbie and I keep forgetting to buy a new one
  • i can never dry myself off very well because I'm sitting on the edge of the tub while toweling off
  • combing my hair out makes my arms ache
  • my hair takes forever to dry
  • i only smell/look good for about 24 hours but can only shower once or twice  a week i.e. it is an enormous exercise in futility
  • i don't want to undress in the cold
That about covers it.  And yes I really should be in the shower right now instead of writing about how much I don't want to shower.

Thursday, January 28, 2016

CFS/ME vs Mitochondrial Dysfunction

This paper is a totally different take on mitochondria's role in CFS/ME than the standard idea brought forth by Dr. Myhill (mito ATP is broken and needs repair).  Of note, Dr Myhill is a general practitioner who treats patients in a regular clinical setting and is not a researcher per say.  This paper was done by genetics researchers using patient data from a central database.  Okay with that caveat let's proceed...

If.  IF! I am reading this paper correctly, then the authors looked at three things in the mitochondria (mito) of PWME/CFS and age/sex matched controls: the haplogroups, SNPs and heteroplasmy.  Think of haplogroups as the ancestral lines of the mito DNA.  If you come from the UK you will have slightly different mito DNA than someone that comes from Asia.  These lines can be traced back for thousands of years over hundreds of generations.  As an aside, the lineage of humans was traced back through maternal mito DNA.

SNPs are single nucleotide polymorphisms which are single locations on a gene.  Each location can have one of two proteins that encodes the genetic information for accurate cell reproduction or genetic recipe if you will.  A single SNP error can potentially lead to illness or disease but not always as the body often has work arounds and redundant systems in place to ensure survival despite coding errors.  A single disease often has clusters of SNP associated with it rather than a single SNP.

Heteroplasmy is the case where a single cell has mitochondria with different types of DNA.  Sometimes this diversity is good and can lead to long life and other times it can lead to disease.  I know too little about this in general to add to this.  Right now this is just paraphrased from the wiki entry on heteroplasmy.

So, this study looked at the ancestry of the mito DNA, the single genetic errors in the mito DNA and the number of different types of mito DNA in patients.  And some very interesting data popped out:

  • when all the variables are adjusted for there are no specific SNPs associated with CFS/ME
  • there were no significant differences in the heteroplasmy of CFS/ME patients and healthy controls
  • This is the interesting bit: while there were no significant differences between CFS/ME patients and healthy controls with regard to haplotype, each haplotype is predictive of the subclass of CFS/ME patients.  In other words, while a single or combination of haplotypes could not predict illness necessarily happening it could predict the symptoms once illness is present.  So one haplotype would have more neuro symptoms, while another would have more gastric symptoms while a third would have more energy production problems.  Wicked cool!!
The significance of these results is that...
 "The variation in symptom constellation that occurs in ME/CFS could be due to genetic variation in individuals, rather than differences in underlying cause of the disease."

which is VERY important to understand.  While there seems to be no difference in mitochondrial DNA between the sick folk and controls, the mito DNA haplotypes do affect how the illness presents itself.

Of course this research needs to be duplicated to be confirmed but it is super cool none the less.

Here is the link to the very technical paper:

Mitochondrial DNA variants correlate with symptoms in myalgic encephalomyelitis/chronic fatigue syndrome  Paul Billing-Ross1Arnaud Germain2Kaixiong Ye3Alon Keinan3Zhenglong Gu1 andMaureen R. Hanson2*

Wednesday, January 27, 2016

AMPK Triggers Mitochondrial Repair

This very interesting paper just came out of the Salk Institute.  It is a tad technical but it might be key to CFS/ME treatments in the future.

Mitochondria are the little power plants for ALL of our cells.  Every single cell in our body has mito in it.  It is fairly well accepted that mitochondria don't work properly in PWME but the mechanism by which it is broken isn't well understood..  See Dr. Myhill's page for more info on mitochondria and CFS/ME.

The paper that just came out from Salk shows the mechanism responsible for the dismemberment of damaged mito and its regrowth.
"Earlier research has shown that AMPK helps to recycle damaged mitochondrial pieces, and signals to the cell when to make new mitochondria." (1)
"When mitochondria are subjected to damage in the form of environmental stress, toxins, or genetic mutations, [which in turn causes AMPK to trigger] the cell [to] take the mitochondria apart, remove the damaged pieces, and re-assemble the mitochondria." (1)
"AMPK, which can be seen as a cellular fuel indicator, is activated by the diabetes drug metformin. Exercise and a restricted diet are also known to activate the enzyme, indicating that these therapies work, at least in part, by promoting mitochondrial health." (1)
This makes me wonder about the effects of prolonged fasting on PWME.  It looks like fasting not only would knock out B cells but also induce the production of fresh mitochondria.  Both of which could potentially be very good for PWME.   Now if I could only muster up the willpower to do a three day fast.  My blood sugar goes really wonky when I don't eat properly.

Oooh almost forgot the links to the papers:

  1. Mitochondrial Repair Mechanisms Seen in Study, Offering Insights into Diseases by Magdalena Kegel
  2. AMP-activated Protein Kinase Mediates Mitochondrial Fission in Response to Energy Stress by Erin Quan Toyama et al 
One thing I do want to look into are the SNPs that control MFF which might be part of my Genetic Genie report.  Not sure.   Will have to get back to you on that one if I remember.  

Tuesday, January 26, 2016

Immune System Reboot

There is a new treatment for MS that was developed in the UK where patients go for the standard chemo rounds to knock out the immune system and then are implanted with stem cells to regenerate it.  The new cells aren't damaged so the body stops attacking itself and the myelin sheath around the nerves regenerates giving the patients their health and functionality back.

Cancer Treatment for MS Patients Gives "Remarkable" Results by Fergus Walsh BBC News 

There has been some speculation in the CFS/ME world wondering if this would work for us as well.  Trouble is we don't know if this is an autoimmune illness or just an illness that hijacks the immune system; i.e. is the body under attack from the immune system or is it just overactive and then underactive?  This is a critical difference.  There is some evidence that it is indeed an autoimmune condition in at least some patients as seen in the Rituximab trials.  Rituximab, another cancer drug, knocks out the b cells and works in some but not all CFS/ME patients.  If there is any lingering viruses in our bodies then once the immune system is knocked out the virus reactivates and a raging infection occurs so there are significant risks to CFS/ME patients particularly those that had a viral onset.

B Lymphocyte Depletion in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.  An Open Phase II Study with Rituximab Maintenance Treatment by Oysten Fluge et al 
Antibody Wipeout Found to Relieve Chronic Fatigue Syndrome by New Scientist 

The million dollar question is 'Is CFS/ME an autoimmune condition?'.

Talking of rebooting the immune system, turns out it can also be done without the drugs.  Prolonged fasting causes the body to 'eat' the white cells (b cells) which forces the body to replace them with new ones essentially rebooting the immune system.  I don't know if anyone in the CFS/ME community has done cyclic prolonged fasting.  Myself I get loopy very very quickly if I don't eat regularly.  Also I don't know if this works on women as well as men since they tend to react to fasting differently than men.  Anyway, here is the article on prolonged fasting and the immune system...
Fasting Triggers Stem Cell Regeneration of Damaged, Old Immune System by Suzanne Wu University of Southern California

I am SO tempted to try a multiday fast but I'm very scared of ending up bedbound.  If you want to give it a go drink LOTS of fluid.  LOTS.  Otherwise you get dehydrated and end up in hospital with other problems.

Friday, January 22, 2016

The Detoxification of Women's Bodies

Detoxing is all the rage.  However, its definition is a tad fuzzy and there are tons of  unscrupulous folk willing to scam you out of your money over it.  My first clue regarding the definition was when I told my CFS doc that I was having detox problems with my glutathione IVs.  He asked me what exactly I meant by that and I had to go into a lengthy explanation of what was happening to my body.  This should have cued me into the ramifications of detoxification language but I was messed up enough at the time to only get slightly aggravated with my doc for being so dense.  Lately, however, I've noticed something that I find disturbing.  I don't know if this is new since I'm relatively new in the chronic illness sphere.  It might have been around for years or decades.  Also, this is fairly difficult for me to describe since the evidence for my disquietude is subtle.  So let me start with language.

Language is a powerful thing and the way we use language can give us insight into how the mind is functioning both in a neurophysical sense and a psychological sense.  An example of a neurophysical glitch would be word loss/substitution.  Calling your pets your furbabies might be an indication that you are substituting your pets for actual children on a psychological level.  What is disturbing me is the way women tend to discuss detoxification.  

Our bodies do indeed have many real detoxification pathways that can break.  The methylation (MTHFR) pathway broke in me and I got very sick as a result.  I needed glutathione IVs, activated charcoal, bentonite clay and B12 to get thing working again. There are also liver pathways (CY9 SNPs), the lymphatic system and probably a few others I don't know anything about yet.  Our bodies can also break in another way; for example leaky gut, where toxins that normally wouldn't be allowed in, sneak in through gaps between the cells lining the gut.  So there are ways that we can break that allow stuff in (leaky gut or leaky brain barrier or even broken skin) and ways that we can break where we can't adequately eliminate toxins from our system (MTHFR, CY9 defects or even not being able to poop regularly).  These are biochemical and physical glitches in our system.  They can be tested for and for the most part fixed or worked around given the right supplements and/or meds and/or diet.
We can also reduce the toxic burden on our bodies by eating clean, removing toxins from our environment, using air and water filters, etc.  The idea is that the fewer toxins we are exposed to then the less the body has to work to eliminate because the toxins were never ingested/absorbed in the first place.

Now here is where it starts to get weird.  When I first started the B12 and folate protocol for MTHFR I started bleeding heavily for weeks on end.  It took me a while to figure out that it coincided with the vitamins.  When I asked about it I was told by several women "Oh that is just the body detoxing.  Don't worry about it.".  I accepted this explanation and tried to continue with the protocol.  This lead to anemia from the excessive blood loss.  I even ended up in the ER at one point with a UT probe up my hoohoo (very uncomfortable BTW) with no evidence that there was anything causing the bleeding.  Taking high doses of fish oil leads to the same thing for me.  I was put on high doses of progesterone to halt the bleeding and there was even talk about cauterization of my uterus to prevent it from happening again.  Not a route I wanted to go so I stopped taking fish oil, B12 and folate which stopped the bleeding.  But this idea that my uterus was detoxing started niggling at me.

Other women were experiencing the same side effects as me but I have yet to find a scientific explanation for it.  The male docs I talked to had never heard of it and the women assumed that their bodies were toxic/dirty and trying to self correct through a detox process that doesn't exist.  While you do indeed detox via breath, sweat, pee and poop, I've never EVER heard of detoxing through the uterus.  I certainly didn't bleed heavily while I was on glutathione IVs even though the detoxification was so drastic that I had to take charcoal or clay after a treatment to reduce the herxing.  

Now you have to realize that women have been told for centuries that bleeding is dirty.  Our lady parts are dirty.  They must be cleaned, deodorized and sanitized.  Companies make a fortune convincing us to use tampons, pads, deodorants, soaps, shampoos and, more recently, shaving all our hair off.  So the idea that our uterus must be detoxed isn't a stretch.  In fact I just found this article:

Doctors Warn Against Using Herbal Tampons To "Detox the Womb"

which describes little herbal sachets that go into your vagina to cleanse it.

I've noticed in some of the patient pages that women often go for the detoxing first.  They assume that their bodies are contaminated and dirty and need cleaning.  This is even before they get tested for ANYTHING, genetics, vitamin deficiency, glutathione levels, ANYTHING.  I never seen the guys do this.  True these spaces are mostly populated by female patients so my sampling is severely skewed, BUT given the history of "dirty women's bodies that must be cleansed" it isn't much of a stretch that women are now assuming that they must be detoxed with little to no evidence.  You see it in the huge sales of juice fasts, sugar detox diets, Whole30 resets, etc.   It is just assumed that our bodies are contaminated and must be fixed.

I'm still trying to work through these ideas.  There is some line that needs to be drawn between actual physical problems when the body breaks and this idea that we are necessarily dirty and must be cleansed at all costs.  If our bodies work properly, then they detox themselves just fine.  There are rumors about yoga gurus that can drink poison without any ill effects because they have trained their body to detox itself very efficiently, but I digress...  I guess I'm trying to get away from the idea that women are necessarily dirty, that our natural state is unclean or that because we are sick we must be toxic.  I keep seeing in the patient forums the language women use to describe detoxing in relation to their bodies and it often reminds me of the "women are dirty and must be cleansed" line of thought.  While we might break, we are most often fixable but we are not necessarily dirty.  It is very hard to find examples of the language I'm referring to since it is very subtle.  For me, it has been a cumulative thing rather than one big glaring example.   Never the less it still worries me.  We need to hold ourselves in higher esteem.  Get tested first.  Don't assume that you are dirty/contaminated.  Find out what is broken and fix that rather than going on random and possibly dangerous detoxification protocols that might not have any science behind them at all.  Our bodies are miraculous objects that can handle toxins when working properly.  And, no, you do NOT detox through uterine bleeding.  That is just plain nonsense akin to bloodletting with leeches.  If you are bleeding, stop the protocol before you get anemia.

However, I still have no idea why B12, folate and fish oil cause heavy bleeding.   In that regard, the medical mystery continues.   In the meantime, I do want to be more mindful about how I discuss and think about detoxification.  Language matters and my uterus does NOT need detoxifying, thank you very much.

Monday, January 11, 2016

Gait and CFS/ME

One of the hallmarks of this illness is the fact that we can NOT multitask.  One of Dr. Bell's tests was asking his patients random questions while clicking a pen.  That pen clicking was just enough to distract the patient and make them unable to answer questions.  It was one of his low tech tests for CFS/ME as no other patients would be affected by pen clicking as severely as PWME.  So from his unscientific country doctor test we go to the scientific study that show this to be true:

Reduced gait automaticity in female patients with chronic fatigue syndrome: Case-control study
 Jan b Eyskens, MSc PT, DO, Pr Ph;1* Jo Nijs, PhD;2 Kristien Wouters;34 Greta Moorkens, MD, PhD1,4

That paper basically says that when you distract a PWME while they are walking they stop walking as they can't walk and pay attention to something else at the same time.  Personally I've known this since my illness started.  On my severe days where I have trouble walking at all, the least little thing distracts me and I freeze in place until I can refocus on walking again.  It is like the pen clicking test.  The least little distraction causes me to stop walking and stand like a statue.  My brain can't handle processing that much information at the same time.  Walking is one of the more difficult tasks we do as humans which means that it takes a lot of brain power to perform the act of walking.  PWME just don't have the processing capability to walk, talk and chew gum at the same time.