A FB Group Focused on UNDERLYING Genetic and Subsequent Causes for Common Overlapping Symptoms of Environmental Illness

I'm prompted today to begin this new topic due to an interesting coincidence of timing where I'm learning of a provider who wishes for some resources about IC / insterstitial cycstitis (and other things that affect their special niche in the world of patient care and therapies (last night at bedtime), seeing the value in what I provide doing my research and sharing on Facebook) COMBINED WITH awakening this morning to look at Facebook and right up top in my feed finding a 15 month old thread about IC / interstitial cystitis.  

Since I know at least ONE person is wanting this information, so .... built it for their information and to use the resources mentioned within the topic and so on ..... and others will come and benefit to when doing their due diligence researching online. And may many be helped as a result.

A question from a member in a Facebook group about MTHFR gene mutation started a new thread in February of last year (2016) and it was 'bumped' today by someone finding it and revitalizing it with a new comment early this morning while I was sleeping (thankfully and not having to get up to pee many times as I used to, so many symptoms reversed, though this symptom creeps back in on me if I don't do enough 'ideally' and slack off on what I intake by mouth (AKA 'diet' but many disdain that word). 

Four letters and all, you know.  Grins): 

(Admin's name, who is a medical doctor who became ill and has been learning about innovative things not taught in MD school or continuing education and bringing it to now 20,000 people in a very helpful, functional group today) -- are you familiar with IC - Interstitial Cystitis..??..

I've been researching IC and joined a couple FB groups. These women are suffering and sound desperate for answers/remedies. I wondered about a SNP involvement and I did find a response to a question about MTHFR and IC from Dr. Lynch.

"MTHFR does predispose one to increased histamine, decreased healing (due to decreased DNA production) and a weakened immune system. In order for interstitial cystitis to subside, it needs to have tissue repair, immune system intact and functional along with normal levels of histamine."
 

Do you have any additional insight / suggestions to offer ..??..
 

 

The admin commented back then (with minor edits and bolding for readability added by me): 

YES...

Interstitial cystitis can be caused by what has been suspected to be the causative agent of "Gulf War Syndrome", the bacteria Mycoplasma fermentans.

Mycoplasma fermentans is generally found in the genitourinary and respiratory tracts. This bacteria lives inside cells [they lack a cell wall] so it is never picked up on a urine collection. This is why the person is always being told there is no urinary tract infection [UTI]. I have tried to ask urologists to take biopsies of the bladder to look for mycoplasma, but I have not been able to get any pathologist to do it. Probably because it won't be covered by insurance companies.

This bacteria is also found in ticks and is one of the associated co-infections associated with Lyme disease.

Usually what I do is to give my patients a prescription for Monurol which they take once every 10 days for 3 months and most people end up doing well thereafter. Monurol comes in sachet packets that get mixed with cold water. Monurol has no effect on the gut and no effect on any infection anywhere in the body except in the bladder where it accumulates and kills the mycoplasm bacteria inside the cells that line the bladder.

Other antibiotics that may work to kill Mycoplasma fermentans include:
Tetracyclines…Doxycyclin, Minocyclin
Azithromycin
Clindamycin
Lincomycin
Sparfloxacin
Ciprofloxacin

But, those antibiotics are OVER KILL, and can cause more trouble than they are worth, and are frankly unnecessary. Monurol every ten days for 3 months is all that is usually needed. Some patients have to repeat a treatment with Monurol as needed when they detect that their symptoms have returned.

Mycoplasma fermentans genomic DNA ...green, revealed by fluorescence in situ hybridization analysis

HeLa cells stained for actin (red), eukaryotic nuclei (blue), and Mycoplasma fermentans genomic DNA (green, revealed by fluorescence in situ hybridization analysis)

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At this point there was a PHOTO IMAGE provided that she found somewhere, which I won't put here as who knows who took it and if it has someone who would be upset their photo was used here.  But I wanted you to know what kind of information is shared in these wonderful Facebook groups these days. 

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A comment follows : "Interesting, I was in the Gulf war, navy said I had it. Discharged and spent 20 years in chronic illness. Was given cipro 3 times...damaged me bad. Repaired through education, research and awesome mentors." a member commented.  I'll call this person "Veteran", ongoing here.

Someone from the (very large and intelligent / high level learners group) said how sad that made them, to which the (Gulf war) veteran said:

I know ... but I learned so much. 

Other person:  Good attitude, but geeeeeez... the years of chronic illness where you're just wanting an EXPLANATION for why you feel so cruddy ......... that's the part that's frustrating. 

Veteran:  True, but you can heal your body with knowledge, resrouces, etc. .... the military did it.  No worries, they're paying for it.<<<<<< (I LOVE THIS ATTITUDE, showing she is doing her work, she's doing what she can and not just 'blaming' and being a 'victim', but also holding them accountable and being appreciative that they're providing the treatment she opts to take from them.  That's not the way all veterans approach things, but I think this is a very 'healed' person who's 'done their work'. 

Other person: Got to thinking about your Cipro comment. Back in the late 80's I was given SEVERAL rounds of Cipro for what my doctors - at the time - thought were SINUS infections. Turned out the pain in my cheek bones was from TMJ problems.

Fast forward a couple of years and that's when my autoimmunity presented. I had also had a tick bite a year before the Cipro ... and I've always wondered if THAT was the reason why I developed autoimmunity. [yes, I have the genetic predisposition for autoimmunity ... but I've wondered if it was the tick bite that sort of started the ball rolling... followed by the Cipro .... and probably other stuff we know better to do now. }

Veteran: Very true... Cipro damaged mitrochondria. Destroys the small intestine which houses our microbiome. (frown emoticon).  And yes, can cause great damage to the gut. A lifetime of repair here, but it can be done

Someone Else suggests a low oxolate diet be looked into, (see, there you go with that four-letter word! already, there's no escaping it just resign yourself to it's a big deal for wellness / illness level and work on compliance and if not, why, and so on).  They related how if you get an organic acids test you can see if the body has a build up of oxalates that it can't clear.  "For many this diet is a game changer for IC" they end.

Other person from the nice exchange with the veteran, above, comments: Yes... I've seen some posts where the women are trying the low oxalate diet. Just feel so bad for them being in so much pain.

Another person then says "Diet and stress reduction has helped me a ton with IC symptoms. I eat a Paleo diet. The only meat I eat is chicken though. I avoid foods high in histamine too. Alcohol can make the symptoms worse too, I avoid that as well."

Yet another person stops by as they'd just seen an article linking IC to Mast Cell Activation Syndrome / MCAS, and brings these links: 

From TAU - Translational Andrology and Urology, October 4, 2015, found at: 

www.ncbi.nlm.nih.gov/pmc/articles/PMC4708556/ [1]

Mast cell activation syndrome

Vicki Ratnercorresponding author
Author information ► Article notes ► Copyright and License information ►
See the article "Preface" in volume 3 on page 1.
See letter "Mast cell activation syndrome in pain syndromes bladder pain syndrome/interstitial cystitis and vulvodynia" in volume 5 on page 396.
See the article "Mast Cells, Mastocytosis, and Related Disorders." in N Engl J Med, volume 373 on page 163.
This article has been cited by other articles in PMC.
 

It has been over 30 years since the Interstitial Cystitis Association of America (ICA) was established in 1984. Although a great deal more is understood about interstitial cystitis/bladder pain syndrome (IC/BPS), the cause and cure of this condition remains unknown. One hypothesis regarding etiology that appears to have been overlooked or dismissed is a theory that involves mast cells. It is worthwhile taking a second look.

Mast cell activation syndrome (MCAS)
Mast cells are found in all tissues of the body and are typically in close proximity to blood vessels and nerves. “The clinical presentation of MCAS is very diverse, due to both the widespread distribution of mast cells and a great heterogeneity of aberrant mediator expression patterns, (therefore) symptoms can occur in virtually all organs and tissue” (1).

When mast cells degranulate, there are a wide range of inflammatory mediators released in various combinations. These include histamine, heparin, proteases, tryptase, cytokines such as TNF alpha, certain prostaglandins, leukotrienes and many others (1-4). In fact, there are over 200 inflammatory mediators that have been identified thus far.

MCAS is distinct from mastocytosis in that it does not include the entire body, but may involve a specific organ, such as the bladder or GI tract.

It is a condition of inappropriately activated mast cells (5). If MCAS does play a role in IC/BPS, the number of mast cells on bladder biopsy may be increased in IC/BPS patients or the mast cell population may not be increased, but may be hyper-responsive and degranulate more frequently in response to a trigger stimuli. It is also possible that mast cells may release inflammatory mediators without degranulation of the mast cell (1-3). Genetic abnormality is likely to play a role as well (5).

To date, I am not aware of any large-scale study that compares the number of mast cells in the bladder biopsy of IC/BPS patients versus the number of mast cells in patients with a normal bladder biopsy using up-to-date staining techniques. H&E staining is the typical stain used in the pathology lab, which is not adequate to identify the correct number of mast cells on biopsy. Some urologists request the use of tryptase or toluidine blue, and while this improves accuracy, the most sensitive and accurate stain available today is CD-117 (2).

In the bladder, mast cells are in close proximity to neurons, as they are in all areas of the body. They all communicate with each other. Mast cells can both degranulate as well as transgranulate via the formation of filipodia (thin, finger-like projections) that attach directly to the neuronal membrane (6). The inflammatory mediators, once released into the bladder could initiate urgency, frequency, supra-pubic pressure and pain of varying degrees.

This would depend on the number of mast cells that degranulate, those that release inflammatory mediators without degranulation, the type of inflammatory mediators released, and/or mast cells that are normal in number but are hyper-responsive and degranulate more frequently. Transgranulation has already been shown to occur in the normal bladder in vivo (7).

Via transgranulation, mast cell inflammatory mediators are taken up directly by the nerve via endocytosis and released into the cytoplasm of the nerve, or found in membrane-bound organelles within the nerve (6). This could trigger pain fibers in the bladder and the electrical impulses would then travel via the ascending pain pathway from the bladder to the spinal cord and on to the central nervous system (CNS), targeting the limbic system, thalamus and cortex.

In the CNS, transgranulation has been shown to occur as well (6), but what role the mast cell fragments play within the CNS is unclear (8). The phenomenon of transgranulation in the CNS has been found in both normal and diseased states. (6,8). This could be the case in other organs as well. However, we are primarily looking at mast cells in the bladder and mast cell degranulation in this case, with transgranulation providing a pain pathway to the CNS from local symptoms in the bladder.

Mast cells and mast cell degranulation may provide a useful way of evaluating patients who likely have IC/BPS. Products of mast cell degranulation in the urine, for example histamine, N-methylhistamine and others, can be extremely difficult to measure because of their short half-lives. This may contribute to false negative results.

However, accurate testing of many urinary inflammatory mediators have been successfully measured (3) and objective findings could yield results that might:

• Explain the etiology or an etiology of IC/BPS;
• Provide diagnostic testing, and/or a marker for the condition;
• Provide treatment directed at the specific inflammatory mediators found to be abnormally high;
• Reduce the amount of time to diagnosis, and possibly categorize the disease.

Measuring the number of mast cells in the biopsies of IC/BPS patients and controls using the stain CD-117 is a relatively simple trial that could be easily undertaken. Inflammatory mediators should then be measured in the urine of both IC/BPS patients and controls to further evaluate the potential differences between these two groups.

If there appears to be no difference between the two groups, next steps should include use of an electron microscopy using time lapse photography on bladder biopsies from IC/BPS patients and controls to see if the mast cells in the biopsies of IC/BPS patients are degranulating at a more frequent rate, or releasing inflammatory mediators without degranulating compared to the control group.

AND THEN, I'd bet if you read the entire article it would end with the usual 'more money and more study is needed about that'.  In the mean time, millions are rolling along going on the plethora of already-published information and drawing conclusions, trialing things, writing it up in various ways whether professional or consumer. 

Or, like me, somewhere in between ....... though anymore I'm truly operating as a consumer with a background as a professional in occupational therapy, health education (two years) and research program administration (8 years, age 24-32).  What ironically brought me back around to IC recently was that my work this summer was caring for and rehabilitating another dog -- this time a female, but very similar to O'Rio Grande when he was 2, from what I've gathered (he's 12 now, I started with him at 10) who I share about at the blog and one topic in the forums. 

She arrived in town and was taken by the owner without my knowledge to the veterinarian for ear scratching (common in laboradors and the diet she was to go on with me would have alleviated that, which was known to the owners) AND because "she's been licking "down there" a lot, the young woman transporting her for the family and going to the vet for them reported.  So she arrived with antibiotics to be given.  And I watched her licking and it occurred AFTER she scratched her ears, 90% of the licks were when she'd been scratching.  She needed to go outside and pee a LOT. 

This seemed more neurological.  I looked at her size and shape and the way she moved -- hypermobility.  She had a walk like Mae West!  VaVaVoom... when she walked slowly, which was rare.  She otherwise was a bat out of hell crazy dog running and hyperactive and misbehaving.  Literally the young Marley dogs in Marley and Me were what she looked like as a puppy and tweenager at 2 (in my way of thinking they're tween at 2, retrievers). 

I witheld the pills and would discuss with the owner if changes didn't occur rapidly with the diet change we went to immediately upon arrival.  And I was not surprised. Rapidly and dramatically.  And then further improvements were made when I got some education via YouTube on canine dysautonomia and tried something I learned there.  "She's so much better now" the transporter recently said to me (who now is living with the dog, who is back with the original family member who adopted the puppy.  What a wonderful success story. 

Here you have read what a group member was verbalizing about empathizing or feeling badly for people with IC symptoms.  I wish I could tell you the look that dog had in her eyes sometimes.  She'd get right up near me and just stare into my eyes ..... for second after second.... as if she was saying "I know I'm a mess, I know you're trying to help me........". 

I work as I do because I've been 'there', I've been as miserable as most anyone with these conditions in the past and I had the good fortune to get better.  Here are a couple of photos to demonstrate:

Me in the fall of 2003, in a relapse (and thinking "I see why people kill themselves, if this doesn't change I'd be really grateful to die" .....................................and  in 2005, after I moved to Grand Junction and was able to get things turned around (again).

            

 

And THAT is why I created Lumigrate. I was planning it a decade ago or more now, starting in 2007 and by Labor Day 2007 we were with a very successful live education group for providers and the area's consumers to come and learn together.  And now I'm doing it this way, and mixing in dogs. 

Here I am as a little girl with one of my parents' kennels' dogs -- it was a male, nobody could remember which one it was one returned for resale due to original buyer not being able to keep the dog moving forward in their life.  My family was like that with their return policy.  And boarding, they'd board dogs only if they were their pups originally or were in my mother's 4-H dog training group. 

OKAY THE BREAK IS OVER LOOKING AT KIDS AND DOGS, back to the research ----------

 

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and at PubMed, this link's overview is included here www.ncbi.nlm.nih.gov/m/pubmed/7648070/ [2] (note it was published in 1995) with the poster copying and pasting this paragraph to highlight why the suggestion of the article at the link: "Tryptase is an enzyme that plays a role in allergic reactions. It is found primarily in mast cells - specialized cells located throughout the body that become activated in response to the presence of an allergen. Mast cells can also release histamine, another chemical involved in allergic reactions."

Elevated mast cell tryptase in the urine of patients with interstitial cystitis.

Boucher W, et al. Br J Urol. 1995.
Authors
Boucher W1, el-Mansoury M, Pang X, Sant GR, Theoharides TC.
Author information
1Department of Pharmacology and Experimental Therapeutics, Tufts University School of Medicine, New England Medical Center, Boston, USA.
Citation
Br J Urol. 1995 Jul;76(1):94-100.
 

Abstract
OBJECTIVE: To investigate the number of tryptase positive bladder mast cells and the level of urine tryptase in interstitial cystitis (IC), a bladder disorder which occurs mostly in women and is characterized by suprapubic pain, frequency and nocturia.

PATIENTS AND METHODS: Bladder biopsies from 37 women with IC and 15 control women with other bladder conditions (age range 18-63 years) were obtained during diagnostic bladder distension and frozen immediately. Mast cells positive for tryptase were identified by immunohistochemistry and evaluated by light microscopy. Tryptase was measured by solid phase radioimmunoassay in urine samples, collected immediately (spot) and during a period of 24 h, obtained from normal women volunteers, controls and patients with IC. To adequately quantify tryptase, the physiologically active tetramer was dissociated to inactive monomers with supersaturated NaCl (6.0 M), and then dialysed.

RESULTS: The patients' spot urine sample tryptase levels were indistinguishable from those of controls, which included the normal women volunteers. However, the tryptase levels in 24 h urine samples were greatly elevated only in patients with IC, both before (P < 0.005), and especially after NaCl treatment and dialysis (P < 0.001).

CONCLUSION: These results indicate that the tryptase levels of 24 h urine samples, combined with methylhistamine levels and the clinical criteria presently used, may possibly help to better identify IC.

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The veteran had said this at the very start of the thread, but it fits overall here, so I'm juggling it down to insert at this point: "I have developed several natural "Healing Cocktails" and protocols for this issue.

With that said there are many natural anti histamines, that can be used. Repair the damaged tissue and regulation iron."

THEN somone ELSE comes in and suggests what I was going to add to the conversation, so instead I just add a reply under to say that it worked for my lingering UTI with mostly kidney symptoms years back: "Mannose powder or D-Mannose, is a miracle for IC. That and changing your diet to include noninflammatory foods."  

To which yet ANOTHER group member contributed their experience with d-Mannose.  "In my case d mannose made me much worse. It gave me diarrhea on top of the other issues which was horrible. I tried it lots, 2 brands -- one has no other ingredients. But I do react to most supplements. I could have mast cell issues, if that connects to some IC. People have it with various causes I believe.
And my whole body was itchy often, mostly after showers. Histamine?!!

                                                                                            ^^^^  --- oh, how I LOVE THESE MOMENTS of people learning and taking a big step forward in their learning because of one simple thread that mostly took place in February of 2016.  Did d-Mannose not present a problem for me and was a miracle cure for $30 a month for a few months and then I've needed a couple of times since (in almost 10 years, one being 7 years ago when my father was dying -- he passed on Labor Day 2010 and I appreciate the funds I got in his last years and after for a while that allowed me to keep 'doing what I started' in 2009 with Lumigrate and utilizing Facebook interrelatedly.  (So just wanted to honorably mention him here.)

And that's the last comment on this thread until the person who 'bumped it' last night, about 8:30 pm my mountain time zone. 

"I have IC and have dealt with it since 2003. Multiple surgeries, countless office procedures and tons of pain. I also have Lyme. The only relief I have ever had from my symptoms was to change my diet. But, the frequency to go all the time was still there. I haven't had any surgeries since 2013 but I still am always going to the bathroom. I found out something interesting this year. My Dr. believes that mycoplasma is responsible for my IC and I have started a treatment to target it." ^^^^ LOVE THIS, the providers are learning, this person's provider knows what the doctor administering this group said, which you see at the top. 

And then ---- drum roll please ---- yet ANOTHER group member had replied on this new comment "Have you been checked for mycotoxins and or glyphosate?"

To which I added a reply that said that glyphosate is so tomorrow -- meaning cutting edge of information today and that I'm tuned in to see the anser from the comment poster and any others' input from this amazing group of people working together, learning, teaching and getting better! 

So I wondered if Stephanie Seneff had ever said anything in her MANY presentations online or published about interstitial cycstitis / IC and found this GEM of a topic at a website about bladders (bladder help dot com).  I suggest you go ... check out this resource which at least had this valuable story, in my eyes and mind, at least.

bladder-help.com/227-2/ [3]

A portion that's targeted on glyphosate after the setup of the woman and man's history with this disorder and how much it affecte their lives.  (And as always for the Lumigrate users' tired brains and difficulties with any typos, grammar and punctuation or capitalization errors interfering with comprehension, I've made minor edits for that and bolded key things to add 'pop' and break up the visual information with a few extra paragraph breaks too).

Finally, after long last, my YouTube video addiction led me in March 2015 to view a conversation
between Jeffrey Smith and a Professor of Artificial Intelligence at MIT, Stephanie Seneff, PhD concerning
many chronic conditions and how they were being caused by something called “glyphosate” in our food
supply.  Titled ”The Health Dangers of Roundup (glyphosate) Herbicide. Jeffrey Smith &
Stephanie Seneff” ( www.youtube.com/watch [4] )

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Mardy's Note inserted here -- this is the information posted at the YouTube video, it's at The Institute for Responsible Technology's YT channel, and they posted this overview of the video which I wanted to insert here for your benefit.  I want to say that I'd not previously seen this video and I've sought out many by Dr. Seneff once I 'got onto her trail' in 2014, and this is one of my FAVORITES I've seen, so please take the time (it's just over an hour but the link above cues you to a point in the video the writer provided and not the beginning). 

[5]

The Institute for Responsible Technology [6]

Published on May 10, 2013

It was "supposed" to be harmless to humans and animals—the perfect weed killer. Now a groundbreaking article just published in the journal Entropy points to Monsanto's Roundup herbicide, and more specifically its active ingredient glyphosate, as devastating—possibly "the most important factor in the development of multiple chronic diseases and conditions that have become prevalent in Westernized societies."

That's right. The herbicide sprayed on most of the world's genetically engineered crops—and which gets soaked into the food portion—is now linked to "autism ... gastrointestinal issues such as inflammatory bowel disease, chronic diarrhea, colitis and Crohn's disease, obesity, cardiovascular disease, depression, cancer, cachexia, Alzheimer's disease, Parkinson's disease, multiple sclerosis, and ALS, among others." Enjoy this videotaped guided tour of Jeffrey Smith interviewing co-author Stephanie Seneff, PhD, a Senior Research Scientist at MIT.

Now, back to what the husband provided in the topic at bladder-help dot com........

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I viewed and reviewed the video multiple times and then contacted Stephanie Seneff at MIT to see if our “mystery chronic condition” know to us now as interstitial cystitis could be related to what she described in the video as “leaky gut syndrome”. It seemed to me that the parallels between the leaky gut syndrome and
perhaps a “leaky bladder syndrome” could be having the same intense pain inducing effects on the
bladder wall.

Stephanie Seneff acknowledged that she had not heard of Interstitial Cystitis, but then quickly via her
proficiency in Artificial Intelligence was able to analyze, correlate her resulting thoughts and give us
specific recommendations that were much less onerous than we had received from anyone over the past
10 years. She responded via e-mail with recommendations and PDF’s of several reference papers that
she had found relevant on the topic.

Following her recommendations, by September 2015 we eliminated as much as possible the GMO’s from
our diet, getting rid of all of Monsanto’s RoundUp (containing glyphosate), which we had actually been
using to control the weeds on our 700 foot long farm property driveway. My wife had actually been the
one doing the periodic RoundUp spraying during the immediately preceding 12 month period.

We switched to as much organic produce as we could, relying on our own organic “raised bed” garden
for much of our produce, while using organic producers for many of the other products we use. We
even followed one of Dr. Seneff’s “toss in” recommendations concerning sulphate deficiency that she
mentions in her video. As she explains, there are reasons why we cannot make up this sulphate
deficiency via oral products but recommended epsom salt baths to do the job.

My wife found that adding lavender to the bath water made this the lowest cost and most pleasurable way to get over IC!

 

We are getting there.  Together.  We are!  (Providers and consumers, learning from each other is a fabulous method that Facebook is very robust with in certain areas of you find them.  It's obviously what Lumigrate's foundational concept was based upon with the live education groups we conducted in 2007 within the large, mainstream building I contracted occupational therapy services from early 2005 until early 2008.

Today we can just do it through Facebook and reach more people, as long as they're on Facebook, of course.