Tuesday, April 18, 2017

New Pain Drugs?

Some interesting findings coming out of China regarding pain signalling.  While these experiments were done in mice and rats, the human nervous system is similar enough that the scientists expect a similar system to be in operation in humans but needs to be proved. The upshot is that both GABA and ion channel gates seem to be involved in pain signal regulation in the peripheral nervous system: i.e. the intensity of pain is regulated locally in the body rather than in the brain. If this proves to be true, the authors claim that an entirely different class of pain drugs could be developed that help relieve pain locally rather than using opiates and the like that affect the brain. I somewhat have my doubts about this last blanket statement since both GABA and ion channels exist in the brain as well as in the peripheral nervous system so a drug that affects one will probably affect the other unless they make it so that it can't cross the blood brain barrier. Anyhow, greater minds than mine are working on this and it is exciting for CRPS, fibro, CFS/ME and any other chronic pain patient.
"After spending five years studying ganglia cells taken from mice and rats in the lab, they found that they could actually exchange information with each other with the help of the signalling molecule GABA - an ability that was previously believed to be restricted to the central nervous system.
More than that, when the researchers stimulated pain signals in rats, they found evidence through this GABA pathway that the ganglia cells were communicating with each other, and regulating and changing the signal they sent on to the central nervous system."

Monday, April 17, 2017

A Long Hard Year

It has been a crazy year both on a health front and personal front.  At the beginning of 2016, I started with a new CFS/ME doc which triggered a cascade of new doc apts.  However, these were all in Boston or south of Boston in Jamaica Plain which all meant pretty bad crashes both from the car trips and the lengthy appointments.  I had a running tally of all the apts and hospital visits and it was quite ridiculous.  Undoubtedly in random order: CFS/ME doc at MGH, the head of neurology at MGH (this was a Dr House style visit with him and his staff), sleep study, multiple sleep doc visits, pulmonary doc and cardiologist.  This was on top of my regular doc, chiro and shrink visits.  I ended up in the ER several times due to a kidney infection and almost dying from the morphine they gave me in the ER and a recurrent UTI that they were scared would end up in another kidney infection.  Then of course when I managed to get through all of that I went in twice for procedures that I had been putting off due to all the other doc visits.  So I went under anesthesia for the first time since having CFS/ME.  The doctors and anesthetists were great.  They read the literature I brought and dosed me properly and I had very little side effects from the surgeries.  I think I crashed more from the stress of it than the actual procedure.  Lets just say the near death experience didn't help allay my fears about going under anesthesia for the first time since having severe neuro symptoms from my illness.  Anyway, this has all wound down for now.  I came out the other end of all of this with a diagnosis of severe sleep apnea which resulted in a CPAP machine and a diagnosis of an enlarged uterus which the doc wants to take out.  I'm still on the fence about that one.

On a personal front we were house shopping and fixing up our current house while all this medical crap was going on.  Last spring we decided that the kitchen had to be gutted completely and a new kitchen put in for us to sell our house at the price it should go for in this market.  So hubs proceeds to demolish stuff.  Dust everywhere and then the bad thing happened.  He opened the wall up when I was sitting on the couch next to the kitchen.  Black mold filled an entire bay.  Turns out the roof had been leaking probably for one to two years but the leak was inside the wall.  It was damp inside and covered in mold.  I immediately started coughing hard.  A year later and I still have a bad cough.  The pulmonologist who isn't mold savvy tried me on three different inhalers before we found one that didn't send my neuro symptoms into a tailspin.  It didn't help.  All I could do was eat cough drops all day.  And of course my CFS/ME got WAY worse.  I also gained weight due to both increased inactivity and eating take out almost everyday.  I was off my normal semi-healthy diet.  I got worse.  Instead of the 2-3 months we were quoted it was closer to six months for everything to be complete.  Everything trigger coughing fits: dust, walking, breathing.  Hubs stopped the cleaning lady from coming over during construction so the place got outrageously filthy.  The dust was staggering.  The house was open concept so even with the plastic sheets up (which the cats ripped doors into so they could access the kitchen) the dust, noise, and fumes were a daily problem.  Then there were the times I had to chase the cats down in the backyard when the construction guys accidentally let them out. I got worse.  On the weekends we were going to open houses which meant I was often climbing stairs to see the other floors if we were going to bid on the house.  This also meant more car trips.  I got worse.  We kept being outbid so we had to keep shopping.  It took us three years of shopping but we finally closed on a new house in November.  Now the packing started.

But the mold contamination was a problem and hubs wanted to ignore the whole contamination thing.  I did manage to talk him out of bringing the upholstered furniture to the new place.  We threw tons of stuff away but this was a large house with 16 years of stuff accumulated and I couldn't help.  Ideally everything should be washed and encased in plastic before moving.  HA!  Like that was going to happen.  The stuff that would take forever to decontaminate should go into the basement while the easily cleaned stuff go into the living space.  Again HA!  Hubs really doesn't take this seriously.  I'm being paranoid.  Imagining it.  However, every time I went to the new house, even though it also had construction dust I didn't have the nasty coughing fits I would at the regular house.  Hubs put together a huge list of repairs that needed to happen before he would let us move to the new place due to dust and smells.  It was torture knowing that I had a pristine place to move into but I had to wait.  My mom came to visit and she helped me clean and pack the kitchen up.  I also managed some of my clothes.  I labeled the boxes "washed" and "needs washing" since our washer decided to kick the bucket and put a halt to all laundry proceedings.  I couldn't get out to the cleaners to get stuff washed so I gave up.  Just pack it and I'll deal with it at the other end.  Not ideal but there was nothing I could do.  I was tired.  Oh so very very tired.  I often had days with the shakes or days I could NOT get out of bed.  My muscles literally wouldn't work and I couldn't get up.

Good news is: I'm moved.  I'm coughing less.  I'm improving.  Still eating way too much take out and processed foods.  I've had to use instant meal stuff like premade meatballs or trays of mannicotti or boxed pulled pork.  Not ideal but a tad better than takeout.  The deck on the new house has full sun in the afternoon so I literally step out the backdoor and can sunbathe.  I don't need to be able to get up or down steps, walk over to a sunny patch, haul a chair around.  I just walk two steps out and sit down.  I'm also facing the woods so naked sunbathing is an option.  I've done it once so far.  Topless has been happening regularly though.  My old yard I could only go topless in certain spots where I was hidden from the neighbors and even then I had to be lying on the ground.  Much easier here.  My new furniture isn't bothering me from a chemical standpoint which is a minor miracle.  The new couch is wicked comfy and I ended up sleeping on it until the water bed made it here.  A stair lift was installed so I have complete access to the second floor and the master bed & bath.  I have  a walk in shower with a handheld head which makes showering so much easier than it used to be.  While the tub is difficult to climb into and out of with the help of hubs it isn't impossible.  I had my first bath the other week and OMG it is awesome!  It is a soaking tub with jets.  I didn't turn the jets on but to be in a large tub with lots of water was divine!  My old tub was tiny because the bathroom was tiny.  As I got bigger I no longer fit well in the old tub.  Now I've got tons of room!

Life is getting better.  I'm slowly improving.  I managed to cook an entire dinner today mostly by myself.  That is the first time in many many many months.  I'm slowly getting my diet back on track.  Slowly taking my supplements again.  I've noticed I can read for longer and read more complex material.  I seem to be able to write again.  Not very organized but still I'm writing again!  It has been a tough year.  I love my new house though.  I still have to go through the exercise of finding new docs near me.  I've lucked out and found one that treats mold illness that is the next town over.  Haven't gone yet since I have to do extensive tests prior to my first visit.  Hubs is still playing with the old house prepping it for sale.  My kid moved to NYC so transportation is a problem.  Plus I just want to settle down first.  I want a couple of weeks without apts or places to be.  I want to eat better food for a while.  I want to improve a bit more before starting another doc apt barrage.

So that is where I've been for the last year.  In and out of hospitals, doc apts, renovations, moving, etc etc.  Things are settling down and I'm enjoying things again.  I have so many plans.  I hope I continue to improve.  I would like to be able to cook again.  I also want to start sewing my own clothes.  There is shite available when you get over size 28.  It sucks.  I have plans.

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.