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Help Jake Defeat Dysautonomia!

$5,160 of $10,000 goal

Raised by 71 people in 6 months
Created January 30, 2019
Hello, my name is Jake and I am a disabled individual suffering from Hyperadrenergic Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia for about 2.5 years now. The reason for this GoFundMe is to hopefully raise the required funds to see a new medical “team” to get to the root of my health issues, and to treat the root cause or causes to give me a chance at getting my life back or as close to it as possible. Because of insurance issues, being financially ruined from my medical issues and subsequent medical debt, and healthcare issues unique to the United States, I will need help to afford this journey so I can get the testing and treatment needed to defeat dysautonomia!

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Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death. Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (POTS) is categorized by the excessive release and cycling of norepinephrine/adrenaline in the body causing rapid heart rate, orthostatic hypertension, and a myriad of other symptoms. POTS affects over one million people worldwide with hyperadrenergic POTS being the less common variant among the population.

My symptoms include:

-Blood pooling (blood vessels dialate instead of constrict; see picture of my feet for reference)

-Tachycardia (fast, beating out of chest due to poor bloodflow to the heart)

-Orthostatic Hypertension

-Extreme light and sound sensitivity

-Poor temperature regulation (feeling constantly hot from the constant adrenaline)

-Adrenaline surges

-Constant headaches/migraines

-Poor eyesight and eye pain (due to lack of proper bloodflow to the eyes)

-Constant thirst, poor liquid retention

-Difficulty standing or walking (currently use wheelchair and other mobility aids)

-Constant general pain and weakness

-Muscle loss

-Muscle spasms

-Deconditioning

-Dizziness (particularly when upright)

-Chronic fatigue

-Brain Fog

-Increased allergies / Mast Cell Activation

-Sleep issues / insomnia

-Chest pain

-Difficulty breathing

-Congestion

-Chemical Sensitivity

-Indigestion and other gut issues

-Difficulty speaking for long periods of time

-Anxiety

-Depression

-And many more

Other diagnoses include:

-Auricular Erythromylalgia

-TMJ

Dysautonomia is a debilitating illness that needs more attention and research in the medical community. What we do know is according to a study by Dysautonomia International, around 18% fully recover from dysautonomia. This may not seem like a large percentage, but it is a significant one. One common theme for those that recover - they find the root cause or causes that led to their dysautonomia and when that gets addressed and treated, it leads to recovery.

This has led me to search for a medical “team” to find and address my root cause or causes which as of right now are unknown. I am happy to report that I have found that team which includes a chronic illness specialist, a primary doctor, and more who all have some experience with dysautonomia. This team already has an idea of what may be going on with me and is very confident that they can help me find the root cause(s) of my heath issues and get my life back.

Unfortunately, this is where I need your help. This condition has financially ruined me and I am disabled and unable to work or live alone. My medical debt is currently over 45 thousand dollars and it continues to climb. I had several misdiagnoses before finding out I had hyperadrenergic POTS and as my health deteriorated I lost my home, my job, and I had to leave school with only a couple of classes left in my Master’s degree program.

Because of various healthcare related issues, this journey to get my life back will be expensive. My team is working with me as best they can but it will cost money and the testing that is necessary to locate and address the root cause(s) will be pricey. Here is a breakdown of some of my future costs. I do not have all of my costs at this point because I am awaiting preliminary testing and I will need some money to go to my next appointment to go over everything and discuss treatment options and further testing. Here is what I have so far.

Appointments with chronic illness specialist + more - $4000

Preliminary Testing / Blood-Work - $5000*

Comprehensive Lyme Disease + Co-Infection Panel - $1300

Additional Testing / Treatment - $3000*

Total: $13,300*

* - Subject to change. These values may potentially be higher depending on what I have and what the treatment entails. Additional testing and treatment is a rough estimate and will be updated following subsequent appointments.

Why am I only asking for $10,000 then? I have decided that although my total costs will likely be higher than 10k that this would be the goal for right now. It is already a steep goal to hit and if it eclipses that goal that would be even better.

I finally found my chance to get my life back or as close to it as humanly possible. I have a way to get there but I’ll need your help. I am putting it all out there and asking for help if you can. Will you help me defeat dysautonomia and finally be healthy again?

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Any and all questions are welcome. Thank you!
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We've passed the 50% mark!

I wanted to take a moment to thank each and every one of you for being responsible for making this happen.

I had no idea that this fundraising campaign would do as well as it has done and it is because of YOU that we have made it this far.

It has come down to all of the shares (670 currently), the word of mouth, and the auxiliary fundraising efforts that benefited this campaign that has made this a success so far and I cannot thank you all enough.

So what's next: I have a big appointment tomorrow the 23rd where I will be discussing the next steps with my mold toxicity specialist. We will be discussing further treatment options as well as testosterone injections. I have no major improvements to report but we are only a few months into a 1+ year process just to get the toxic mold out of my body. One positive piece of news I can report is I have been able to increase doses of my mold medications with very little symptoms.

I also recently had to get my parents' home tested since some bad pipes and potential water damage was discovered. Keep your fingers crossed that the results are favorable.

This fundraising campaign is the only reason I can afford even some of the care, treatment, and testing that I need. While it is still our goal to reach 100%, I am blown away by the support that led to the campaign to pass the 50% mark.

If you are concerned with receiving an email notification for this update don't worry. I don't plan on having that feature enabled for future updates unless another major milestone in the campaign is reached. I will not spam your inboxes.

I still have a long way to go. I am still in pain, disabled, and unable to do many of things I once took for granted. With that said, it is the success of this GoFundMe that has given me hope that I can reach the finish line. I don't know when that will happen. But I believe one day I will be healthy again and will get my life back.

Any additional sharing of this campaign is much appreciated. Any questions are welcome. Until then, I cannot thank you all enough!
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PART TWO: So what does my treatment look like? (long, expensive, but it exists)

Mold illness – I need to stop feeding this mold what it thrives on and take things to get it out of there. So I’m going to be on a medication called cholestyramine which will bind to the mold and I’ll get rid of it in the way you think I’ll get rid of it (although I just got word it’s on manufacturer backorder…). I will be on additional natural binders to take in between doses since it’s bad and I need to throw a lot at it essentially.

I also will be on a diet called the no-amylose diet. You can read more into it but mold thrives on sugars, grains, and more. It’s essentially a modified paleo with less stress on the organics and more stress on avoid these specific foods and avoid sugar for the most part. It’s not that different than what I eat now but RIP oatmeal, I’ll miss you.

For the mold in my nose I have to use a nebulizer with a special medication to help eradicate it. So I get to vape my mold meds – great…

SIBO – The best medication for SIBO is rifaximin but it is a multi-thousand dollar med thanks to bs drug patent garbage that is destroying American healthcare. I can’t afford it, period. So we’re hoping the binders help for that as well and we’ll monitor it. There is a natural method but it may interact with my beta-blocker so we’ll re-evaluate in a month and if I have to stop my beta-blocker I’ll do what I have to.

Vitamin D and Magnesium – supplements
Thyroid dysregulation – Liothyronine small dose working up, hopefully no issues

Low testosterone – as mentioned before, I get to inject myself with testosterone. However, I will be waiting at least a few weeks to evaluate cost, see what insurance may cover, blah blah blah. Anyway, not looking forward to that but again I’ll do what I have to.

Epstein-Barr re-activation – antivirals and supplementation

Additional supplementation to help with immune function and water retention (which is poor due to mold and dysautonomia)

I also have to get rid of anything porous from Norfolk. Clothes can be washed to the point where they’re fine using a specialty wash for mold but like plastics and things of that nature are gone. It’s not a crazy amount of things since I already got rid of a lot over time but it’s pretty much all gotta go now.

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What does my long-term outlook look like?

It’s going to take a LONG time to recover but it is possible and likely. Over a year is what was thrown out there. However, I will begin to feel better in some areas in a few months maybe sooner if I’m lucky. I can’t wait for that! I have the potential to fully recover but will need to be very careful about mold moving forward. No moldy houses, no moldy car, no moldy or mold-friendly environments (so sorry Norfolk, I don’t think you’ll be seeing me ever again). I may decide to just move out of Virginia when I am healthy enough to be safe but we’ll see. I hear Colorado’s pretty cool…but this is a long way away if it’s going to happen so who knows. Still, with being careful about things full recovery is still possible. My doctor is certain my blood pooling will begin to go away and all of my debilitating symptoms will reduce over time as well!

My doctor made a point to say she feels it is essentially a medical miracle that I have gotten to this point without being purely bedbound and I have made some improvements IN SPITE of all this. Mold illness alone puts people in the hospital and not able to do anything. I have that and several other things which have similar effects on the body/brain. I told her for over a year I couldn’t even lift my head up or get out of bed and she was surprised I wasn’t still in that position. Her outlook for me is even higher for this and commends me for doing all this through the pain, disability, and other debilitating issues. I hope and believe she is right on this. I can be pretty headstrong sometimes so I guess it’s helping.

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Do I need additional testing?

Yes – My blood tests also indicate post-Lyme, likely parasitic Lyme. I need to get tested to see if I have a parasitic issue and it’s expensive. I also will need blood work periodically to monitor progress. Let’s just hope that comes back negative and we’re all good there.

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What are the costs?

So if you see what the GoFundMe is at now – consider it gone.

The cost of all my future appointments, testing, meds, treatment, supplements, equipment, and more will run me at the overall goal of the GoFundMe through the year.

However, what it has already raised got me this far and I cannot thank you all enough. Without what it raised to this point I’d be really screwed and further in the hole to the point where getting here wouldn’t be possible.

I’m not asking for another round of shares but…I could probably use another round of shares. Thank you in advance to those that do.

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So my diagnosis is basically this – Mold Illness w/ thyroid dysregulation, low testosterone, SIBO, vitamin deficiency, re-activated Epstein-Barr, and dysautonomia (perfect storm making sense now right?)

I have the ANSWERS, I have a DIAGNOSIS, I have the ROOT cause(s), I have a TREATMENT plan, and I have a long-term roadmap to RECOVERY!

I cannot thank you all enough for the support. At one point I had no hope. Things are going to be rough but this is positive! I’m ready to be on the road to recovery. I’m ready to get my life back or as close to it as possible!
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After a several-hour appointment in which over a hundred different blood test results were gone over in detail one-by-one along with additional discussion I FINALLY have a concrete diagnosis. I have ANSWERS with PROOF. I have a plan in place and I have a decently composed roadmap moving forward but we had to uncover how all of this happened and what led to this point. What led to my debilitating health issues? What led to my constant pain? What led to me being disabled? We now know what led to all this.

So I have SEVERAL diagnoses now. There is a ROOT cause. However, this branched into several other things as well. You will begin to see that I have suffered through the perfect storm of illness in a way. This will take a while to walk through – but let’s get to the root cause first.
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My root cause is – Mold Illness (otherwise known as mold toxicity or CIRS)
Mold Illness occurs as an acute inflammatory response in the body and brain following exposure to toxic levels of mold and sometimes other toxigenic organisms. Mold is all over the place, but some of us are not able to essentially process it and get it out of our system which causes a host of health issues due to the mold sitting there, growing, thriving, and basically taking over.

An important thing to note here: Not everyone is susceptible to this illness. There is a gene that is responsible for “mold susceptibility” that approximately 25% of the population has. I had this gene tested – and I tested positive.

Toxic mold will destroy your body and it has done a great job of destroying mine. It leads to poor nutrient absorption, poor immune function, poor mitochondrial function, and can break the brain-blood barrier and wreak havoc on your brain. This can cause system failure, dysregulation, destructive autoimmune responses and more.

So how did I get mold illness? One word: NORFOLK

When I moved to Norfolk I was a grad student with not much money. I lived in some pretty crappy living situations housing-wise. I first rented a place with Jimmie and Danielle which I was thankful for the offer since I couldn’t have afforded living otherwise. This place was riddled with black mold…The bathroom I used had black mold so bad I remember trying to clean it little by little as time went on, only for it to come back like I never even did anything. This is in addition to having mice, cockroaches, and apparently under the house was a nightmare. Along with the moist and “floody” environment that Norfolk presents, this is likely where the toxic exposure began, but it didn’t end there. In 2016 I moved to another place. This place had been remodeled recently, but I later found out not properly. This place had flooding issues, some mold, roaches, and was remodeled using shoddy products and chemicals that were never disclosed to me. The previous issues with water pipes and flooding were also never revealed to me prior to signing the lease. I found out much later when a neighbor revealed this all to me and some investigating into it confirmed these issues. It didn’t take long for my health to slide in this new place.

On top of this I worked at a place with old buildings, poor maintenance, and flooding issues. I also had a car that had windows that wouldn’t close and flooded frequently. For someone with a genetic issue regarding mold, moving to Norfolk can be seen as a huge mistake. (although to be fair I could have not moved there and moved to a wet, moldy area later in life – I was always genetically susceptible)

What led to the gene testing though? Okay so a lot of things needed to be tested to get to that point. Based on symptoms, blood work was ordered for several potential indicators of mold illness.
-MMP9
-VEGF
-VIP
-TGF Beta
-C4a
-MSH

The list goes on and on. Well I get these back and boom – they’re all either massively high (TGF Beta was well over double the high end of normal range) or massively low (VEGF was near non-existent).

Then through these results it was pretty clear that this was what was going on but the genetics needed to be tested. They were twice to confirm and yep – positive for this gene defect.

I won’t go through every test and how it’s wrecking my body/brain but let me talk about one to show you how it lines up with my issues and with dysautonomia.

VEGF – Vascular Endothelial Growth Factor (near non-existent in me)

So this is responsible for a lot of things but one major one is this is responsible for telling your body to grow capillaries. Capillaries are responsible for helping blood travel and it helps keep blood flow going to the right places. So all my effort to build capillaries to combat blood pooling has been a waste since I’m not building capillaries! Plus no capillaries – no wonder my blood pooling is so bad!

You can look up the others and see how this can affect me so badly. I mean, without even explaining it all if I just said my body is full of toxic mold you can assume it’ll wreck me.

It was also determined through testing that this mold is very prevalent in my sinuses. This explains my constant congestion and more. It’s not going to be easy to get that out of there.

So we have Mold Illness which led to dysautonomia and SIBO – However, there’s a lot more going on that I had no clue about.

My family has a history of thyroid issues. Everyone on my mom’s side of the family is on thyroid meds. I had several of the general thyroid tests like through a CBC order and whatnot and it was all in normal range for the most part. I have cysts on my thyroid but they are benign. However, on a whim a t3/t3 reverse test was ordered and it was determined that I have thyroid dysregulation. To try and simplify, the thyroid is supposed to take what’s called T4 and make T3 which helps with energy and other important functions. T3 reverse is bad. You don’t want your thyroid making much of that. It was determined through more blood work that my thyroid is taking all my T4 and instead of making T3 it is making T3 reverse which causes several issues on its own.

Having no energy? Yea makes sense now. I will need to be on thyroid medication now.

In addition (crazy right?) my testosterone was tested and it is insanely low. This could be related to the dysregulation associated with dysautonomia, could have some intersection with mold taking over and mucking it up but it’s not clear. Your boy has to inject himself with testosterone soon…It also explains me hitting a wall with building any significant muscle and how even though I weigh okay my body fat % is very high. (Skinnyfat for those that have heard that before)

In addition my vitamin D and magnesium are SUPER low. I will be on supplements for both moving forward. This is likely due to the poor absorption from mold/SIBO but I need to be on it anyway. My IV yesterday included that among other things (they determined I needed it then and I wasn’t doing so great by the end of the appointment due to several factors)

In addition (last one I’m sorry) – I mentioned a long time ago it looked like I had Epstein-Barr virus and just never knew about it. Epstein-Barr virus can come back or re-activate. Blood work shows that it has re-activated. That alone can cause a bunch of issues but now with my weakened immune system, weakened state, and more it’s annoying but not surprising it has found a way to come back with force.

(there may be an additional issue but further testing is needed – I'll talk about this later)
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$5,160 of $10,000 goal

Raised by 71 people in 6 months
Created January 30, 2019
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