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POTS & pulse pressure diagram

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(Credit: Primer on the Autonomic Nervous System) Shows the physical dynamic that occurs orthostatically; people with POTS are unable to properly compensate for this shift.

Heartbeat

More About Pulse Pressure…The full series of my posts on this topic can be found here: posts about pulse pressure. I hope this series is helpful to at least a few people out there.

23andMe LiveWello App [UPDATED]

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23andMeYou can find all of my related posts here.

IMPORTANT UPDATE

There has been yet another HUGE update to the Livewello Gene App.

This time, VERY IMPORTANT FEATURES have been added. Your Livewello Gene Report now contains useful links which can help you with understanding your 23andMe Results—>

  • Links in the “Gene & Variation” column now take you to Pubmed articles!!!
  • From your Livewello Gene Report, you can now share PubMed Articles relating to a particular SNP, in FaceBook conversations or in a Group. Just click on the SNP in the “Gene Variations” column of your Livewello Report.
  • Clicking links in the “Your Allele” column take you BACK to YOUR 23andMe Raw Data Browser.

Nancy at LiveWello contacted me about this through my blog, and I have tried it out and think its worth recommending. Below Nancy’s note is my information and links to my reports generated through the LiveWello 23andMe Gene App, Genetic Genie, MTHFRsupport and Promethease so you can see how they compare.


Hi Shae,
I’d like to inform you about Livewello’s 23andMe Gene App: https://liveWello.com/23andMe It was developed by Dr Iwegbue, himself the father of a child on the (Autism) Spectrum. We’d like you to add it as a resource on your Blog.

For people who have received their 23andMe test results, the LiveWello 23andMe App will run your 23andMe Raw Data through our Variance Report Software, giving you over 300 Gene SNPs on the: Transulfuration Pathway, Methylation Pathway, Liver Detox Pathways, Mitochondrial function, Thryoid disease, Alzheimer’s risk, Cell Membrane integrity, IgG, IgA, IgE Immune Systems, Clotting Factors, susceptibility to gut issues and much more…It costs only $19.95 for each Raw Data file and will generate your report in less than 5 minutes.
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Your report comes with active rsiDs & Risk Alleles. When you click on them, it takes you directly to SNPedia, NCBI and PubMed to research and read more about your SNPs/Risk Alleles.

We’re always adding more SNPs. Whenever LiveWello makes updates to their 23andme App, the changes are instantly reflected on all existing reports. This gives you the power to access more than 900,000 SNPs on your raw data so that as new correlations are made with diseases/symptoms and specific genes, you can figure out if you have the risk allele. This means that you will have this tool forever not just when you run the report.

Here is a sample LiveWello 23andMe report with all the 300 SNPs it currently translates (you’ll need to get a free Livewello account to view it- please do not modify):
Shae’s ZebraSoup Report (alternate link below)

If you have any questions please email: support@livewello.com
Our policy is to respond to you quickly and politely in less than 30 minutes during Business hours. We wish you the very best in attaining optimum health for yourself and your Patients.
Always here to help,
Nancy


As I mentioned, I gave this a test drive. My results are posted here (more options to view results linked farther down) so you can see what a report currently looks like. They add to the data as their information databank grows, which is included, so your report will also grow over time.

Once your raw data is converted, you can:
-Share access to it with your Health Village on Livewello
-Post SNPs directly to your FaceBook groups.
-Save it to your Documents Library (2GB free storage)
-View your report on your free iPhone/iPad Livewello App
-Discuss results with your Practitioner in a Comment thread
-Download your report to your desktop as a PDF
-Send by email
-Print your report
-Follow LiveWello on Facebook

They also have other features for tracking your health data, and you can store and share documents. You can upload and store,various types of documents and share them (or keep them private). You can allow commenting. You can also upload by emailing documents to your LiveWello documents account. You also get a journal, to which you can email entries if you wish. LiveWello has some nice features beyond the 23andMe app.

COMPARISON OF VARIOUS 23andMe RAW DATA ANALYSIS REPORTS

I have been asked if it is worth spending twenty dollars on this when there other resources out there for less. My personal opinion is yes. Why? Several reasons. The biggest is that LiveWello is unique in o e aspect: they keep your report and update it with additional information, so your report grows over time. The others don’t offer that. Another reason I suggest this (if you have concerns leading you in this direction in the first place) is that it doesn’t hurt to have a few different sources to compare, and twenty bucks is pretty cheap. Want to see what a few different reports look like?

See screenshots of these reports here.

I uploaded my own results from other apps that analyze raw data from 23andMe to my documents storage folder on LiveWello – please do NOT attempt to modify or regenerate these:

ALTERNATE LINKS TO VIEW MY REPORTS (added 2 Oct 2013) *
You may also view my personal reports using the sharing links below. No account registration is required; however, they are password protected. Enter the word ‘genome’ to view these files. Please do not distribute without written permission.

* If you have a LiveWello account and want to connect through their ‘village’ community, you can find me there as zebra.

LiveWello also has a free iOS app you can download. Access the LiveWello 23andMe App and give it a try. Requires registration and one time payment do $19.95, which I found worth it. There are several other LiveWello apps that come with this.

Other Useful tools in your LiveWello App:
What Else Can Your Livewello App Do? livewello.com/what-does-it-do
Download The Free Livewello Platform IOS App: http://bit.ly/RocPhA
Livewello Emergency Health Card: livewello.com/health-card
Practitioner Directory: livewello.com/practitioner
Livewello’s 23andme App: livewello.com/23andme
Livewello’s 23andme App Tutorial: https://vimeo.com/m/68028593
Tutorial on Sharing your Livewello 23andMe Report: https://vimeo.com/68664792
For The Latest Livewello App News: http://www.facebook.com/livewello
About LiveWello: livewello.com/press

ALSO HELPFUL: STERLING HILL’s EDS SNP LIST
This is a list of SNPs that are potentially related to EDS III (hEDS) including which allele is the ‘risk’ allele fore each and a link to further details for each SNP, in PDF format, 9 pages. (Added 2 Oct 2013) *


You can find all of my posts on this and related topics here.


Pulse Pressure: the ignored vital statistic

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I admit from the beginning of this post that pulse pressure monitoring is one of my pet topics, so there is a bit of personal bias here. Having said that, I firmly believe every Dysautonomia patient should be monitoring their pulse pressure in addition to heart rate and blood pressure.

iBP app

What is Pulse Pressure?

Simply put, pulse pressure (pp) is the difference between the upper and lower blood pressure readings, in other words, subtract the diastolic bp from the systolic bp like this:

systolic-diastolic=pulse pressure

A ‘good’ pulse pressure should be about 40 mmHg. Less than 30 mmHg is not so hot. Under 20 mmHg is ‘bad’ and if you get under 10 mmHg, I seriously recommend a trip to the ER. Speaking of which, get emergency help ANYTIME you have concerns about changes in your vitals or symptoms.

* This is a good spot to throw in that old disclaimer that this post (and anything else in this blog) is NOT medical advice and should not be taken as such. This is simply a collection of the observations, opinions and experiences of one Dysautonomia sufferer.

Why Does Pulse Pressure Matter?

That is a complex question, but as pertains to Dysautonomis (POTS in particular), it is important to keep an eye on this oft ignored reading for several reasons. Pulse pressure drops, also called pulse pressure narrowing, is very frequent with POTS, particularly (in my observation) with hyperadrenergeric and/or combination POTS patients. Personally, I experience pp drops under 10 mmHg and have gone as low as 1 mmHg. Not a good thing!

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United We Tilt!

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I have a favor to ask you all. PLEASE either do this simple test at home or ask your doc to do it when you go for your next physical exam…I strongly advocate the ‘Poor Man’s Tilt Test’ be a part of every physical exam from school age onward. This would avoid a lot of problems for so many people! If you have access to a bp cuff amd a pencil/pen, you can do this at home. I have instructions on my blog at the link below, and I will gladly help anyone with the process if you need it. Spread the word! Let’s make this a well known standard go-to test, and try to get as many people doing it and asking their doctors to do it as possible! It would seriously mean the world to me if you will do this…for yourself and your loved ones. Help screen for Dysautonomia / POTS (Postural Orthostatic Tachycardia Syndrome)! It has been estimated that as many as 1 in 100 teens may have the condition, so this is truly critical.

The PMTT: http://potsville.wordpress.com/2012/06/10/tilt-this-2/

 

Dysautonomia Information for friends, family, co-workers and anyone you’d like to inform

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This is a great article to share with family and friends (as well as co-workers, colleagues, or anyone you’d like to inform) to help them understand what it is like to live with Dysautonomia. Formerly titled Dysautonomia Information For Loved Ones,  this article was originally posted on a POTS support group. I asked permission to share it here…I have revised it and added to it over time, so it does vary greatly from Erika’s original post. I thank the original poster for her hard work and fantastic input, which formed the core of this article. I will continue to add to it and revise it, so you may want to check back occasionally here at http://www.ZebraSoup.me for those revisions. Your suggestions and input are very helpful…simply leave a comment below this article. Feel free to share it. I include a PDF version you can download here (last revision 3 May 2014).

 


HELPING YOUR FAMILY & FRIENDS UNDERSTAND DYSAUTONOMIA

Living with Dysautonomia is hard. So is living with someone who has it. Each brings unique challenges, and understanding what Dysautonomia really is and how it affects the body is crucial. The following is a patient’s perspective on Dysautonomia, compiled using both medical research as well as input from many other Dysautonomia patients. The information is meant to make coping with the impact of Dysautonomia easier, not only on the sufferer, but also on family and friends who are also vastly affected by the fallout of the systemic tornado that is Dysautonomia. 

What is Dysautonomia:

There are several types (and sub-types) of Dysautonomia. I have two types:

  1. POTS (Postural Orthostatic Tachycardia Syndrome; my sub-type is hyperMCA POTS, which is a rare subset of the hyper POTS sub-type)
  2. NCS/NMH (Neurocardiogenic Syncope, also called Neurally Mediated Hypotension, as well as a few other variations that all refer to the same thing)

Further information on various types of Dysautonomia are available at www.dinet.org

If you think you might have Dysautonomia, I have posted an easy home screening ‘test’ for this; all you need is a blood pressure cuff/monitor and pen/paper (ideally, print and use the sheet provided to record your readings at the specified intervals/positions). The instructions and sheet are posted under “Tilt This” at http://www.ZebraSoup.me (this blog).

Dysautonomia is a malfunctioning of the Autonomic Nervous System, which controls the unconscious bodily functions, in other words, all those functions we don’t think about to perform.  This includes your heart rate, digestion, breathing, blood pressure, pulse pressure, digestion, heartbeat, bladder function and narrowing or widening of the blood vessels, body temperature, sweating, bowel function and sleep patterns, among others. Dysautonomia can also be referred to as Autonomic Neuropathy. Think of it this way – Dysautonomia can interrupt the inner workings of the human body, sort of like a car that is mechanically sound but has wiring issues…and looks new!

A patient with Dysautonomia is sometimes bedridden (for varying periods of time; often we are housebound due to the effects of this condition, whether bedridden or not) or forced to lay down often because when we stand up, our brain fails to send the correct signals to the heart to pump blood to the brain. This can result in a significant drop in blood pressure upon standing, along with an increase in heart rate, because our heart is forced to beat overtime to get blood back up to the brain so we don’t faint (we sometimes call this a ‘face plant’ although the correct term is ‘syncope’ – by the way, most Dysautonomia patients never actually pass out, according to research which indicates that only about a quarter of patients actually experience syncope…I am one of those who does pass out).

For example, when I stand up and remain standing still, my heart rate typically reaches between 120 and 165 beats per minute within five minutes, without even having taken a few steps yet (my heart rate actually drops when I begin to move). This is often a target heart rate for someone that has been running on a treadmill for over 25 minutes. This dramatic climb of heart rate (tachycardia) upon standing is the hallmark characteristic of the condition POTS (Postural Orthostatic Tachycardia Syndrome), which is a type of Dysautonomia. To “qualify” as POTS, a patient must exhibit symptoms of pre-syncope (symptoms that typically precede actual fainting/passing out) in addition to a rise of 30 beats per minute in heart rate (some use 25 beats as the standard; most use 30 beats).

I jokingly say, “I can run a marathon standing still,” which is what it is actually like for my body when I do stand still, comparatively speaking. This is a hard concept for others to grasp, especially when they see no visible effects and I “look just fine” to them.

The autonomic nervous system, also known as the involuntary nervous system, regulates those facets in the body that occur automatically, such as breathing. It is composed of two branches – the parasympathetic nervous system and the sympathetic nervous system. There is actually a third branch, but for the sake of simplicity, I’ll discuss the primary branches as associated with Dysautonomia.

Sympathetic – The sympathetic nervous system is also known as our stress response system, or the “fight or flight” system. It is set into motion when we experience stress. It increases our heart rate and blood pressure (as well as pulse pressure), dilates pupils, restricts circulation, slows down digestion, relaxes the bladder, makes us more alert and aware and provides a boost in energy so that we are capable of dealing with the stressful situation effectively. It increases energy and is often referred to as the accelerator of the autonomic nervous system. (See also: COMT gene)

Parasympathetic – The job of the parasympathetic nervous system is the exact opposite. Once the stressful event is over, it brings the heart rate and blood pressure (as well as corresponding pulse pressure) back to normal, constricts pupils, improves circulation, enhances digestion, calms us down, contracts the bladder and puts us into a state of rest and relaxation. It conserves energy and is often referred to as the breaks of the autonomic nervous system. Since the Sympathetic is the “fight or flight” side, think of the Parasympathetic as the “chillax” side of things.

 

 

What Causes Dysautonomia Symptoms?

When the autonomic nervous system is functioning as it should, the sympathetic nervous system and the parasympathetic nervous system work in perfect harmony together to maintain balance in the body. The sympathetic nervous system provides us with the tools we need to respond to stress adequately and the parasympathetic nervous system restores us to our normal state of peace and tranquility. Those of us with this condition find ourselves stuck in “fight or flight” mode; we yearn for the “chillax” mode.

Dysautonomia, or autonomic nervous system dysfunction, occurs when these two systems fail to work together in harmony. The most common scenario is the sympathetic nervous system remains dominant most of the time and the parasympathetic never turns on. When this occurs, then the body remains in a state of fight or flight at all times. The intensity will vary, but it stays switched on. This variation is responsible for the wide variations in both symptoms we experience, as well as the severity, which fluctuates. A lot. A whole lot. The stress response system never fully turns off, but my increase and decrease. If the body remains in a state of fight or flight at all times, then many degenerative processes begin to happen and result in a variety of chronic health conditions and overall effects on our health like those in the list farther down, because the “fight or flight” side is only supposed to be “on” for limited times. It is only supposed to be used for brief emergencies, or when our bodies need that extra boost adrenaline provides.

The stress response system was designed to deal with brief emergencies that threaten survival. It isn’t supposed to last very long because the body cannot sustain itself for very long in this state, at least not without significant effects. The natural and preferred state of the mind and body is the parasympathetic state, because it is regenerative. However, it is willing to forgo its preferred parasympathetic state to deal with acute emergencies and will remain in that state if the emergency continues. If the brain and body remain in the sympathetic “fight or flight” state for too long and too often, it is degenerative; it breaks us down. If this cycle continues, then eventually the system burns out. It is this cycle that results in Dysautonomia or autonomic nervous system dysfunction. The actual causes can vary greatly, and can even be stacked; for example, I have at least seven distinct known ’causes’ of/contributors to my Dysautonomia. My list of diagnosis is here, if you are curious (and bored).

What is it like to live with Dysautonomia? 

Symptoms are widely variable, in both presentation and intensity. It is different for each person, and also varies greatly for each person suffers from Dysautonomia. We will exhibit a varying degree of symptoms within each day. Our symptoms may change dramatically over time, as well. Things like environment, stress, weather, diet, etc., will effect us greatly. Symptoms often include the following (more in-depth list farther on):

  • Sweating Abnormalities
  • Swollen nodules/lymph nodes
  • Syncope/Fainting/near syncope
  • Tachycardia (rapid heart rate)
  • Taste & appetite changes. Fruits & other acidic foods may taste extremely acidic. Foods may taste different if patient is tired, stressed, or post-syncopal episode.
  • Tremulousness
  • Trouble Breathing
  • Vertigo
  • Vomiting
  • Generalized Weakness and/or weakness in legs
  • Weight gain (or loss) regardless of diet modifications
  • White appearance of fingers – Some present with white patches of skin on arms and legs. Often have the appearance of blotchy like skin. (Vitiligo, Raynaud’s, nerve damage and other issues may also contribute to this)

Symptoms of Dysautonomia In-Depth 

Blood pooling in POTS

The quantity and severity of symptoms varies from day to day.

** Not all POTS or NCS/NMH  patients have all of these symptoms; while some may have most, others may have fewer. Also, according to most current research, only about 25% of POTS patients actually faint/pass out.

I am one of the lucky few who does pass out and experiences most of the following symptoms. Each person will have a unique experience, and it can vary greatly day by day, or even hour by hour or minute by minute. **

These symptoms have an impact that reaches beyond the patient experience; they can affect lifestyle, of course, but they also deeply impact all manner of interactions in our lives. That may keen the inability to plan activities (you don’t know what your body will be doing in five minutes, let alone five days). They even affect everyday conversations, much more than even most patients realize. For example, things like attentiveness (or lack thereof, to be more precise), brain fog, mood swings…all these can leave a footprint way beyond the patient. How others interpret and perceive is is very dependent on our words and deeds, and Dysautonomia is very invasive in these areas; it impacts everything we do and say, and changes faster than the weather and far more unpredictably. The result can easily lead to  misunderstandings, even arguments; hurt feelings, abandonment issues, and everything from anxiety to depression are just a few of the potential side effects of Dysautonomia…and not just for the patient. I believe that understanding the mechanisms of how Dysautonomia works and how it affects us, and like ripples in a pond, those around us (which is often bounced back at us in ways that make the Dysautonomia and it’s symptoms worse, resulting in a terrible escalating cycle) is the best key to mitigating the negative impact on everyone involved. It is still challenging, to put it in positive light, but the more we do to minimize misunderstandings and the stress they cause, the better off we all are.

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Legions of Lesions: in the trenches

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I’ve changed my ‘protocol’ significantly. I’ve learned a lot since first writing these posts. I’m finally on a better track with it. I have a long battle still ahead, but have found some good artillery to help in my ongoing war with it.

It is complex, although some things that do help are simple to do. I’m not yet able to write a thorough post on my experiences and what I’ve learned as far as what helps, what doesn’t, and my experiences of both success and epic failure as I’ve learned how this ‘enemy’ responds to various attempts to stamp it out (or simply cope with the misery it causes).

In the meantime, if you suffer from lesions like this (or Lyme and co-infections), here are a few key things…
– Alkalinity: check your ph level (you most likely need to raise it significantly).
– Increase your sodium intake (assuming there are no medical reasons to prevent you from safely doing so).
– Magnesium lotion is phenomenal. You’ll want to take magnesium supplements, as well.
– Supplements: there are several that help, and several I feel are mandatory. Magnesium, chelated iron, biotin, NAC (n-acetal-l-cystine), ALCAR, vitamin B Complex and C are some essentials.
– Baking soda (make a paste with either a carrier oil, like coconut oil or castor oil, or witch hazel or peroxide) also helps tremendously. Taking a teaspoon of baking soda in water daily also helps.
– Essential Oils/Extracts: Oil of oregano is another excellent treatment, as are black walnut oil/extract, rosemary oil, cat’s claw, grapefruit seed extract and others. Some of these types of extracts/oils can be taken internally, as well…you can blend your own tincture in a carrier oil.
– I highly recommend InspiredNutrition.com’s Ultimate Bio-Fibrin and their Monolaurin. That combo breaks down bio films and then attacks the culprits. I take this daily without fail.
– Soaking in Epsom salts is also a great help, as is saltwater (get in the ocean if you can; I have a saltwater pool at home…if neither is feasible for you, creating that environment in a tub will still help).
– Colloidal Silver: does help but I found it wasn’t enough without addressing other issues (especially my ph level, which needs to be raised considerably, as does my sodium level) and deficiencies.

There is more you can do…I will do a thorough write up as soon as I am able to do it justice. I can’t stress enough how crucial ph level can be. I had no idea before this how drastically it can affect you.

If you are fighting this, you’ll need to understand the Herx reaction…not only what it is, but what it means in context of your improvement. There is a good write up on Herx here.

I’ll be posting a much more detailed version as soon as I am able to handle doing it (may need to work on it in tiny bits over time and publish the post when it is complete). As far as jewelry making, it it will be quite a while before I can attempt that. I am also stalled on finishing up the remaining outstanding orders and/or refunds. Those will still be addressed, but I have to deal with my health first. My acetone levels were so high I’m lucky it didn’t kill me…the smallest tasks, like brushing my hair and basic rudimentary hygiene, are more than I can manage without help. I apologize to everyone who is still waiting. I am still unable to respond to any messages about any of that, either…and it is critical that I avoid stress of any kind so that I can have a decent shot at recovery. I realize that’s unfair to anyone who is waiting…but bear in mind that this whole situation and what I’m suffering through also isn’t what you can remotely describe as fair, either. Life is unfair and damned hard sometimes. All I can say about that stuff is I will get it all dealt with as soon as I am able to do it.

Meanwhile, back to my battle…

Embracing the Herx

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I’m pretty damn sick, pardon my vernacular. This will be a short, choppy post…no energy for a well written one. I’m on a complicated regimen to fight this lesion-causing stuff (may well be the Bb spirochete associated with Lyme). There is some improvement, but it is slow and hard won. And I be herxin‘ like a mo-fo. Again, pardon my semi-vernacular.

The Herx (herximer affect—in short, that’s when the treatment makes you feel rather awful) is brutal. Brutal. Joint pain like I’ve never experienced (and I’m used to a lot of pain). Night sweats, chills, fatigue worsening (although I occasionally feel slightly better briefly), brain fog magnification…all part of my Herx life. It can be grisly. Aspects of it are rather gross, so I’ll skip that stuff. Trying not to think about it, anyway.
The good part (I think) is that Herx means it’s having an effect. So my war goes on…I find myself resonating deeply with stories from the trenches during WWI. Yeah, it really is that hard. It’s already given me PTSD. I’d have to gross you out to explain, and I’m too spoon-less to gross you out even if I was so inclined. So believe it, don’t believe it…I’m too busy herxin’ to care much.
As for unanswered emails, jewelry updates, or anything else…it’s all on the back burner for a while. Can’t deal with anything other than fighting for my life right now. I’m not intentionally blowing anyone off, I just can’t do anything. That’s just how it will be for a while. It may take a long time. I don’t know. And that’s assuming a positive outcome. So until then, everything will remain in a state of unfinished chaos.
Me, I’m just hanging on with everything I’ve got, surviving hour by hour. It’s exhausting just doing that. Trying to stay positive…that’s pretty hard. The second front in a two-front war, I guess.
And so I fight on.

Stages of grief: recycled

I think the time has come for me to accept that I probably won’t beat this mystery disease…a disease doctors dismiss, at best…that I will likely suffer with it for the rest of my life, whatever that consists of. I’m not saying I won’t still try, only that reality is setting in hard. And it hurts. And pisses me off. And hurts. And pisses me off. Makes me wail and bawl like an idiot through long, dark nights…days, as well.

I’m grieving the loss of my life as I knew it. The loss of me, as I knew me. It’s a familiar process; I’ve been through it before with other diagnoses, but this is different. It feels like a real death. I want to lash out hard at the unfairness. I miss ME terribly. And I’m not talking about the pre-dx-list me…I’m talking about the ZebraSoup me, chock full of pain and fatigue and so on. I was okay with that. It sucked at times, but I always found my joy. I had my mission in life, I had my sense of self, and I was still ME.

THIS has stolen those things like a thief in broad daylight, in a crowded parking lot, while no one notices…and what I’ve lost is just not okay with me. It’s so much more than I am willing to part with. I don’t know how to make peace with this. It’s the hardest thing I’ve ever faced, and it’s kicking my ass. I’m a fighter, so that’s saying something. Not much can kick my ass like this.

It isn’t in my nature to quit and go off sniveling…but I can’t let go of that grief and anger cycle. I haven’t found the path through that yet. I only know that, if I ever want even a small piece of something like a shadow of my life as it was, I have to find that path. Because I am so sick of grief and anger and loss. I want joy again.

In the best of possible outcomes, I want to be cured of this…or at least have it become so manageable I am able to dismiss it most of the time. Reality says that in a world where neither the CDC nor any doctor will help me (no research, no medical support whatsoever….you’re on your own, baby) I am ill equipped to wipe out spirochetes like these; invasive bastards that leave nothing unsavaged. The daily regimen just to deal with the physical minimum takes hours, leaving me exhausted, leaving nothing for me…even simple basic self-care tasks are eaten away by this beast.

There was a time I would have thought of Dysautonomia in similar terms, when things were bad. But this is a whole new circle of hell. It’s something I cannot describe to you. It defies words. (Even if I could, I wouldn’t want to…it’s just gross). It is the kind of battle that pushes you to the edge of sanity, sometimes past it, daily. I can’t waive a white flag of surrender, because I can’t bear the idea of letting this beast just have me. I have to try to fight it, even if the odds are stacked so far against me, I might as well be a one-girl D-Day invasion. My odds are about that good. Which is to,say, they suck.

So I must find some way to make peace with life in battle; a losing proposition that I will continue to face every day, knowing that fact, and still find some piece of a life I want to have. A tiny piece is acceptable, at this point, because it sure beats the alternative.

This is not meant to whine, and I don’t want pity. It is what it is. It sucks hairy ape crotch. I just need to vent…give voice to my cycle of grief, and find something….it may require intense meditation, or perhaps a miracle (whipped or not). It just can’t be what it is.

Part of that means I need to change what I am doing. I can’t do this myself; I need help. Help with hygienic tasks, help with keeping the house in a manner that is conducive to living with this kind of beast (the kind of cleaning I need done involves a lot of sterilization, for example; even laundry mist be done in a certain rather labor intensive way that is far beyond my capabilities). So the help I need has to face a larger burden than they would in a home without this requirement for extra measures.

Hopefully, if I can find (and afford) the right kind of help, maybe the fight won’t be as daunting. Reinforcements would be so damn welcome in this battle.

I feel like I live in the trenches of WWI, dug into utter misery with no end in sight, and about that pleasant. Horrible would be a compliment.

I hope something gives…some wisp of sunlight filters into my room…something…

This is my reality. I feel no obligation to sugarcoat it. It’s not my duty to pretend it’s okay when it is anything but okay. Don’t ask how I am. You don’t want to know the answer, I promise you; and I don’t want to have to think about it to give the answer. I don’t like pretending, so it’s best just to skip all that. Stipulate that I am not at all okay.

Meanwhile, I’m still trying my heart out, still fighting…and searching for some kind of acceptance for what is going on (what may continue as long as I live). I hope it doesn’t get worse. Kinda way past my limit already. Now would be a great time for the cosmos to return some of that good karma. That would be appreciated beyond measure.

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Lyme and “Morgellon’s Disease” – likely components of a single condition

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Let me start by saying this is my theory; that in fact, both Lyme and a “skin disorder” that is referred to as “Morgellon’s Disease”, are actually two components of the very SAME bacterial infection. I feel strongly that I am right. I have limited evidence, at this point…mostly what courts would likely consider to be “circumstantial” evidence, but evidence, nonetheless. I suffer from both. The personal observations I’ve made (including material collected from my lesions, observation of different manifestations of ‘things’ in lesions, which I believe are this ‘biofilm’ bonded to the lovely little spirochete that is found in BOTH conditions, etc) lead me to the inevitable logical leap that these two horrifying and debilitating conditions are actually both aspects of the same infectious disease, caused by the same spirochete.

Recent research on the Morgellon’s front has confirmed presence of this same spirochete, along with collagen and keratin (which I believe comprises the ‘biofilm’ that can become lesions, whether in a brain of in skin). This article on Lyme, presented in Prevention Magazine, gives serious credence to my theory. Two key paragraphs that coincide with my hypothesis follow:

“Even if he had, the infection may have remained elusive. B. burgdorferi is a tough target. As soon as it infects a person, it disperses through the bloodstream. Then this coil-shaped bacteria, or spirochete, uses its *corkscrew shape to burrow into human tissue*, infecting joints, the heart, and even nervous system tissue. In the meantime, it *changes its appearance to escape detection by the immune system*. Because this bacteria doesn’t follow a familiar pattern, immune cells have no way to identify the invaders. So it makes sense that the CDC-approved tests, which look for Lyme antibodies for proof the body has encountered the pathogen, are far from 100% accurate.”

and…

“…In 2012, she and her colleagues announced a potential explanation for why the bacteria evades detection and, in her view, outwits treatment: They found *that Borrelia occasionally assembles into solidified, protective groups (called biofilms) that can make an infection chronic and very difficult to treat*. Some researchers are skeptical that we’ll ever find evidence of Borrelia biofilms inside patients, but Sapi and others think *the bacteria may use biofilms to hold fast within tissue in the body despite antibiotic treatment*.”

Full Article: http://m.prevention.com/health/health-concerns/truth-about-lyme-disease

Now, those two paragraphs, alone, are compelling…they potentially explain the embedded ‘things’ found in my lesions and the lesions of countless Morgellon’s sufferers. They also potentially explain the wide variety of ‘shapes’ seen, both with the naked eye and microscopically, of “foreign matter” found embedded in lesions.

I posit that this “biofilm’ the article mentions is the Morgellon’s culprit. Those of us with Ehlers Danlos, a connective tissue disorder affecting the body’s collagen, may be more susceptible to developing the Morgellon’s aspect of the disease because of our faulty collagen (one of the components found in Morgellon’s, along with aforementioned spirochetes and keratin). I’ve personally witnessed a number of Ehlers Danlos patients who have also developed Morgellon’s-like symptoms.

Morgellon’s is, to me, an evil word; it is a label for a misunderstood condition that has historically been considered delusional, rendering it’s sufferers unable to get any actual medical help for a condition that can become so horrific, it literally causes many to commit suicide in their desperation to escape it. This is simply unacceptable in today’s world of medical technology. Medicine gave up on understanding Morgellon’s, and took the easy route of explaining it away by labeling it’s sufferers delusional, and the ‘problem’ inconsequential; when, in fact, it has been recently proven that there is a physiological element…the same spirochete that is found in Lyme. Along with this spirochete, evidence of ‘biofilm’ materials collagen and keratin, also have been proven present.

Now, this seems to me the equivalent of a medical billboard screaming, “Hey, researchers!!! We are two aspects of the same disease!!! Maybe you should drop the labels and research us together!!!”

So I challenge every medical researcher dealing with either condition to prove me wrong. I challenge every doctor diagnosing either to prove me wrong. I feel pretty confident I am NOT wrong, and I think researching BOTH TOGETHER may be the KEY to finding the answers for both.

Here is an intensive research paper on the spirochete…it’s heavy stuff, but fascinating.

MedicalGear » LabGear — Medical Lab Tests Reference

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MedicalGear » LabGear — Medical Lab Tests Reference:
Award winning Pocket tool for Medical Laboratory Tests, LabGear packs in all that is needed for quick reference in clinical rounds. for iPhone, iPad & iPod Touch

Clinical rotations is where medical references are needed the most, with the highly intuitive interface of LabGear, you’ve got over 300+ lab tests at your fingertips in a way never presented before:

Intuitive User Interface with tabbed browsing, tag shortcuts
Support for Conventional Units (US) and SI units
Your custom reference intervals and bookmarks and notes are synced across devices via iCloud.
Inbuilt links to Lab Tests Online.org, Wikipedia and an inbuilt browser for searching online, straight from within the app
Fishbone schematic panel images

Categories for all:
Organ System
Tumor markers
Endocrine (Hormones)
Hematology
Cardiovascular System
Pulmonary System
Gastrointestinal System
Nephrology
Pregnancy
Immunology
Lab specimen
Urine sample
Cerebrospinal fluid
Amnion
Others (Synovial, sweat)
Lab Subtype
Electrolytes & Metabolites
Enzymes
Proteins
Lipids
Red blood cells
White blood cells
Blood Gases
Cardiac Markers
Drugs (therapeutic)

Link

Cindy Casey Morgellons Disease Diary

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Cindy Casey Morgellons Disease Diary.


MORE ON LESIONS LIKE MINE:
Legions of Lesions (part one)
Legions of Legions (the sequel)
-Legions of Lesions (war – part 3)
Research article linking collagen (EDS overlap?)
All posts related to lesions

On My Must Have List: HurryCane

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I actually use two HurryCanes when doing any significant walking (doctors orders), one for minor walking. Around the house I am usually okay without, since there is always furniture or a wall near me to lean on if I need it, although during a flare, I sometimes need one or both canes even then. I’ve used a variety of canes since age 24 (I am 45 now) and have to admit the HurryCane really does live up to the hype. I really do get asked, “Where’d you get that cane?” A lot. I have had to write the web address down for folks so often, I’ve actually considered ordering cards with the info. I just might…it would save time!

They really do make a big difference. I highly recommend HurryCane.

HurryCane

Lesions and EDS overlap explained?

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Interesting research showing that collagen is a primary component in the filaments found in skin biopsies of Morgellons patients…I have suspected that those of us with Ehlers Danlos (EDS) are more susceptible to ‘Morgellons’ because I theorized that our mutated collagen plays a key role. This research certainly backs up my brainstorming. It also finds spirochetes associated with Lyme, which I contracted in 2009. The descriptions given are consistent with my personal experience.
(download PDF file)

MORE ON LESIONS LIKE MINE:
Legions of Lesions (part one)
Legions of Legions (the sequel)
-Legions of Lesions (war – part 3)
Research article linking collagen (EDS overlap?)
All posts related to lesions

Legions of Lesions Part Three – War

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I’ve begun having success, finally, and may actually be winning my battle. It’s been an incredibly hard year (more than a year, actually). The biggest remaining lesion (which was originally almost the size of my palm, pictured above) is finally almost conquered. There are still many, many small ones…they are also improving. I am listing here the things I am using successfully.

Note: I have numerous photos of the lesions over time in a private album; if you are interested, I can invite you (leave a comment or contact me). Some of the photos are rather graphic, so I am not posting many publicly here.

Bear in mind this is NOT medical advice, merely my personal experience, so if you choose to try my ‘regimen’ please use caution and understand this ‘protocol’ is experimental. Having said that, the combination seems to really be working effectively.

It’s a lot of ‘stuff’ but I found it necessary to follow ‘harsh’ treatments that may dry skin, for example, with soothing ones (to moisturize, fight itch/pain, etc). If I had to pick just a few of these due to budget restrictions, I’d use the ones in bold followed by an asterisk, no matter what I had to sacrifice in order to do so. My life was completely unbearable before. I now hope to see a full recovery from this systemic nightmare that causes the lesions (which I believe is a result of long-term Lyme).

With a little luck, I soon may be able to finish some of the orders on backlog…as well as issuing the remaining refunds to anyone whose order remains unfulfilled.

Please click the ‘read more’ link to see the list of items I am using in my battle. Links are provided for most.

Continue reading

Link

2014 Morgellons Medical Conference Highlights New Research

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2014 Morgellons Medical Conference Highlights New Research.


MORE ON LESIONS LIKE MINE:
Legions of Lesions (part one)
Legions of Legions (the sequel)
-Legions of Lesions (war – part 3)
Research article linking collagen (EDS overlap?)
All posts related to lesions

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