This is one of the hardest things I've ever written. I've reached the lowest point of my life lately and I don't know what to do so I'm reaching out to the community for help. I've never asked for help like this before and it feels very difficult to do so.
Over the past 5 years my health has declined pretty dramatically and rapidly. It's all come on like the blink of an eye and can't believe I'm currently at this point. I have developed all of the symptoms of a deadly disease and I am seriously questioning how much longer I will be alive if I don't do something quickly.
I'm facing multiple serious medical conditions that have made life very difficult and dwindled my will to live to almost nothing. I have been too sick to work, I am living in my vehicle, I am in urgent need of medical treatments that my insurance won't pay for, I'm ~$20,000 debt, my van that I'm living is needing big repairs, and my credit cards are getting close to maxed out. Any support would mean the world to me.
I will attempt to explain my story in a brief way but it's been SO MUCH over the past 5 years. This will be as truncated as possible and if you want to read the slightly longer version I'll put that at the bottom of my GoFundMe.
I will leave these in case anyone wants to donate but doesn't want to read the whole thing
Venmo:
Cashapp: $ActivateTrueHealth
PayPal: paypal.me/activatetruehealth
5 years ago I was in Ecuador and I got a dental implant for a tooth that I was missing due to a failed root canal. The long story short is I ended up having pain where the implant was placed and I had to fly back there 9 months later for them to attempt to fix it. After they couldn't find anything wrong with it they had to remove it which was a pretty traumatic procedure in itself.
After months went by and I was still in pain, I knew something was very wrong.
Now it's been 4 years since I've had the implant removed and I'm still in pain everyday.
The pain is a sharp stabbing sensation in my jaw, right where the implant was. Like someone sticking a needle deep into the nerve. It usually only lasts for 3-5 seconds but it will come several times a minute. Other times the pain will come once or twice per hour. It varies. Sometimes it is an itching, burning sensation. It is absolutely excruciating and makes life very difficult.
After seeing over 10 practitioners, the only answers I got was that it is likely nerve damage, permanent, and nothing can be done. Until recently, a biological dentist found out I have a piece of foreign material (likely gutta percha from the root canal) right where my pain is. It can be removed with a surgery and will likely get me out of this agonizing pain, but it's $4,000 and I don't have the money for it, and they don't accept insurance.
Dealing with this pain has been the most difficult thing I've ever dealt with in my life. Through all of this difficulty I'm proud to say I've stayed sober throughout all of it and in June I will be celebrating 9 years of sobriety (including from cannabis).
I have really been trying to get my life together but so many health issues have not allowed me to do so.
At this point of my story I was already becoming suicidal because the pain was so intense and I couldn't imagine living the rest of my life with it. The condition I have is called trigeminal neuralgia and it is nicknamed "the suicide disease".
I honestly didn't think things could get any worse but unfortunately, this was just the beginning of my nightmare.
Over the following 4 years I developed pain in almost every joint of my body from a combination of injuries and Lyme disease, other debilitating chronic symptoms, and more recently, significant neurological dysfunction. Here's a quick recap:
- Left wrist - Broke wrist and damaged tendon from sandboarding accident.
- Right wrist - Tore a ligament from a work related injury.
Both wrists haven't fully healed and cause me chronic pain.
- Neck pain - Woke up in excruciating pain one day so bad I couldn't sleep and eventually landed in the ER after 5 days of it not improving. Later found out this was onset of Lyme disease which I'll explain more about. My neck has chronic pain now.
- Shin pain - Chronic pain in both shin bones and I have had to give up my favorite hobbies such as running and dancing. Last year I was in a wheelchair and crutches for 3 weeks because of it. This is from Lyme disease/Bartonella.
- Right knee - Jumped from a small boulder and landed wrong. It's healed somewhat but not completely.
- Left shoulder - This has gotten really bad in the past couple of months. I have to be really careful using it because it hurts so much. I'm mostly using my right arm for things. Likely Lyme.
- Lower back - Intense pain in my lower spine. Seeing a specialist soon.
- Right thumb - Tore a tendon or ligament at dance and it hasn't healed. Now I have pain whenever gripping things.
- Ulnar nerve entrapment on my right elbow. Causes the "funny bone feeling" frequently, and sometimes significant pain.
- Left big toe - Had intense Gout-like pain for over a month earlier this year. It was so bad I had trouble walking. So far it hasn't returned but there's a high chance it will.
- Right hand - On both the lateral and medial sides of my hand I have significant pain. I can no longer even write with a pencil or pen, or use tools without pain. Seeing a specialist soon.
About 2 years ago is when Lyme and other infections showed up. Half of my face became paralyzed and I was unable to smile or blink. That got better but since then I've been dealing with:
- Relapsing fevers and flu-like symptoms
- Daily headaches
- Extreme fatigue
- Cognitive issues
- Feeling faint/dizziness/light-headed
- Coughing
- Inability to catch my breath
- Recurring sore throats
- Skin issues
- Nausea
- Numbness in hands/arms
- Potential problems with my heart
- Neurological symptoms that I'll describe below
I found out I don't just have Lyme disease but I have 5 different tick-borne infections.
The past few months things have taken yet another turn for the worse and neurological symptoms have increased dramatically.
I've developed all the symptoms of ALS, which is a deadly disease:
- Extreme muscle weakness. My muscles start to tremble with the slightest effort. I've noticed sometimes while eating, the spoon will shake on the way to my mouth. My legs tremble just from standing. I can't easily sit up in bed. My arm shakes when trying to trim my beard.
- Starting to have trouble walking. I've developed a limp that has been getting worse which is a clear sign of neurological dysfunction.
- I can't stand for very long because my legs are so weak and shaky.
- Frequent fasciculations all over my body (muscle twitching)
This has definitely been the scariest part of all this and it came on suddenly and it is getting worse every month. I was in the ER 2 times in the past month because of it.
The cognitive problems have gotten worse as well. It feels like my brain is not working.
- Trouble finding words and forming sentences
- Trouble spelling words I've never had problems with
- Dyslexia type symptoms
- Terrible anxiety that is pretty much 24/7
- Sounds have changed and everything sounds very abrasive and annoying
- Startle response is exaggerated and every noise that is unexpected triggers my nervous system and makes me jump. This is one of the worst symptoms.
- Constant ringing in my ears
- Insomnia
- Trouble focusing
- Frustration and irritation at things that never bothered me
- Drastic reduction in vision over the past year. The vision in my right eye is completely blurry and I can hardly read the words on a screen in front of my face
To top it all off, earlier this year I had some concerning labs that showed a pattern that occurs in autoimmune diabetes.
- High HbA1c
- Low insulin
- Elevated zinc transporter antibody
- Dyslycemia on CGM
- Intense fatigue after meals
My last labs were a bit better but my doctors are still suspicious of type 1 diabetes. If it's true this was likely triggered by Lyme and/or EBV. I eat very well. Gluten free, dairy free, no sugar, and whole foods only.
I live in my minivan. I was planning to try to rent a place this year but since my health has declined so dramatically I realized there's no way. My van has problems and it's been very stressful since it's my home. I need:
- Diagnose + fix clunking noise on front end
- Axel work (car violently shakes when driving)
- Valve cover gasket replacement
- Spark plug seal replacement
- Diagnose + fix P0441 check engine light
- Windshield replacement
I have not been able to work because of all these symptoms - especially the relapsing fever, flu-like symptoms, headaches, and neurological dysfunction. There's no way I can be on a schedule where someone relies on me because I don't know when the next flare will come. When it does come I'm out for count and barely able to function.
I was doing gig work on days I am feeling well enough - like Walmart deliveries - but my car is not okay to be driving anymore, and now with the new neurological symptoms I'm unsure if I can even carry heavy groceries.
All of this combined has me at the lowest point I've ever been at and finding it very difficult to find strength to keep going.
Any support you could give would mean the world to me and could potentially be the thing that fully turns my life around. Even $5 helps. Getting out of pain and being able to live a somewhat normal life again would be the biggest blessing of my entire life and make my Christmas.
I would be perfectly happy if someone wanted to pay the practitioners themselves instead of the money going directly to me.
This is what money would go towards:
- $4,000 - Surgery to remove the foreign material, remove dead tooth roots, investigate cavitation and PRF injection to regenerate my nerve
- $3,000 - This would cover 12 months of appointments with my Lyme specialist. It's $500 every appointment and I have to see him once every other month. He said treatment could be up to 24 months.
- $3,600 - This would cover 12 months of my doctor prescribed herbs, supplements, and medications.
- $5,000 - Supportive therapies like ozone injections and SOT. My doctor said he doesn't feel optimistic about my neurologic symptoms improving with only the medications and herbs but other therapies might help.
-$3,000 - Car repairs as outlined above
- If anyone wanted to donate food gift cards or food in general that would also be appreciated. Although my diet is very strict right now for health reasons.
Thank you from the bottom of my heart for reading, caring, and helping me get a chance at my life back. I am wishing you all a Merry Christmas.
Longer version:
I've reached an all time low and wanted to give an update on how I'm doing since the last time I did was two years ago. Unfortunately things have gotten much worse since then. I'm reaching out for support in any way that anyone wants to give it.
If you're my friend, having you read this all the way through would be super meaningful to me, especially if you know me in person! I'm not looking for health advice. I'm looking for empathy, compassion, validation, and to be seen in what I'm going through.
I'll share the whole story but I'll try to be brief because it's been A LOT over five years. The stuff towards the end is what's been some of the scariest and most recent.
Five years ago, I got a dental implant for a missing tooth in Ecuador. Long story short is I ended up having a lot of pain in my jaw and after waiting 9 months for my visa to renew I flew back to Ecuador because they said they could fix it.
They tried a few different things but couldn't figure out anything wrong with the implant and even tried saying I might be making the pain up. Eventually they ended up removing the implant which was a terrible experience and I remember hearing and feeling my jaw crack when they finally got it loose.
I was bummed about needing to get the implant removed but was just so happy that I'd finally be getting some relief from my pain.. or so I thought. Weeks went by and the pain didn't change. The dentist said it's because I'm still healing. Okay, I thought. But then after months went by and I'm still in pain, I started getting extremely concerned. At this point I was pretty sure it was nerve damage but desperately didn't want that to be true.
Now it's been 4 years since I've had the implant removed and I'm still in pain just about everyday..
The pain is usually a sharp stabbing sensation in my jaw, right where the implant was. It usually only lasts for 3-5 seconds and then goes away. But sometimes it will come several times a minute. Other times I'll only feel the pain once or twice an hour.
On top of the stabbing pain, occasionally I'll get an itching, burning sensation on the bottom of my chin where the implant was. Sort of like having an open wound and then someone tickling it with a feather. Not pleasant! Fortunately this year has been the best out of the past five years regarding the nerve pain, but it's still terrible.
I have seen seven dentists, four oral surgeons, a neurologist, a neurosurgeon, a facial pain specialist and no one has been able to give me any answers other than it could be nerve damage and likely permanent. I finally saw a biological dentist and have new perspective and new hope. They found out I have a piece of foreign object right where my pain is. Likely gutta percha from a root canal.
The oral surgeon and pain specialist advised me against the surgery and said it will make my pain worse. The biological dentist disagrees and I am on the bio dentist's side. Gutta percha is neurotoxic and if I have a known neurotoxin right where I have nerve pain, that kind of makes sense there's a high chance that's what's causing my pain and it needs to come out! However the surgery is over $4,000 and I'm not able to afford it.
Dealing with this pain has been the most difficult thing I've ever dealt with in my life. Even more difficult than living the nightmare of heroin/meth/benzo addiction for 6 years. And I didn't think it could be much worse than that. At this point I already didn't want to live anymore because the pain was unbearable and I didn't think things could get much worse.
If you Google "what is the suicide disease?", the result you will get is called trigeminal neuralgia which is the condition that I have.
Unfortunately, this was only the beginning of my nightmare.
About a year after this I had a sandboarding accident and broke my wrist and damaged a tendon. The bone healed fine but the tendon did not and I still have pain whenever I put weight on that wrist.
Six months after that I twisted my other wrist and ended up tearing a ligament. That has not healed either and now my other wrist that I damaged in the sandboarding accident is my "good" wrist. I have to be very careful how I do things to not be in significant pain. If my wrists are flared up even doing things like turning my steering wheel or turning a door knob will hurt.
Six months or so after that I randomly woke up one day with terrible neck pain. I figured I just slept on it wrong and didn't think too much about it. I woke up the following day and the pain was twice as bad and now it was the worst neck pain I've ever felt in my life. But still I figured I just slept on it wrong two nights in a row and really tweaked it and it would start to get better in a few days. Instead of the pain getting better after a few days it got significantly worse and moved into my spine. I was in excruciating pain and I was only sleeping one to two hours a night because it was so bad.
It must have been on the fifth or sixth day I ended up going to the ER because something felt seriously wrong.
Around this time I also felt like I was getting the flu, but it stayed in that "getting" stage and never got to the "got the flu" stage if that makes sense (prodromal phase). I still had enough vitality to go out hiking and climbing mountains but I had a headache for two weeks straight at this point, was fatigued and spacey, I felt feverish, was getting chills and sweats and muscle aches.
I mentioned these other symptoms at the ER but they didn't make any connection, they did a CT scan and told me I was having muscle spasms which was didn't seem accurate and I know now it wasn't. They gave me some steroids and muscle relaxers and sent me on my way. I was finally able to sleep again and my neck got a little better but to summarize: ever since then my neck has never been the same and I have chronic pain there as well.
A week after that, half of my face became paralyzed and I couldn't smile or blink. I went to urgent care and I ended up finding out I have Lyme disease. There's a separate story with that where they made a really big mistake and gave me medication that would have increased the chance my face never went back to normal if I didn't look into the research on my own and find out.
I did the recommended three weeks of doxycycline and started feeling better but as soon as I finished I started feeling sick again.
A couple months after that I had a bad knee injury that hasn't fully healed, although it's healed more than other things.
Another few months and I was at a festival dancing and developed stress fractures in my left shin. I could hardly walk for three weeks and was using crutches, wheelchairs, and a walking boot. I didn't understand what was going on but now I know it's related to one of the tick borne diseases I have that is known to infect the shin bones. I now have chronic pain in my shins whenever I do anything impact related and have had to give up running and dancing which were some of my favorite things. Sometimes I have pain even when I'm just sitting around.
Every step along this journey of new pain, and new symptoms I thought there's no possible way it could get worse. I've asked God to take me out of this body because I don't want to do this anymore.
Another 6 months or so later I dislocated my thumb and tore a tendon or ligament. That hasn't fully healed and now I have pain whenever gripping things tightly.
At some point during this I noticed pain and dysfunction in my shoulder that was progressively getting worse as well.
Something happened with my lower back at the beginning of this year and I had terrible excruciating pain on the lower right side of my spine consistently for six months. That has been improving since I stopped dancing and modified my bed.
Some months after the back pain started I woke up one day with what I believe was Gout in my left big toe. It was so painful I could hardly walk for a week. That lasted about a month and thankfully has gotten better, but Gout returns about 70% of the time if people have it once. I believe all of this is related to tick borne diseases.
Okay.. so that's the majority of the physical pain I'm in but now I've been getting hit with some other really nasty stuff.
After thousands of dollars on many different tests I've finally found out that I don't just have Lyme disease but I have five different tick borne diseases, which makes a lot of sense. Since I've acquired these infections I've had an endless amount of symptoms. Just to name a few: daily headaches, fatigue, fevers, coughing, intense nausea, crazy skin problems, brain fog and lately things have gotten worse.
I'm getting fevers and flu-like symptoms ranging from twice a week to every other week and it usually lasts 2-3 days. And when it happens I'm out for the count and barely able to function. And the days in between are rough as well. I've had a headache pretty much every single day for the past two years.
Recently the infection has gotten into my nervous system and causing some really concerning symptoms. Over the past couple months I've developed tremors and muscle weakness and it seems to be getting worse every week. I'm starting to notice eating and drinking being a little more difficult because my fork and cup shake on the way to my mouth. It's not just tremors in my hands but my whole body. My muscles are extremely weak and shake with the slightest effort. I can't even sit up in bed to look out the window without my torso shaking.
My brain is not working as it used to and focusing on anything is extremely difficult. Sometimes it's hard for me to just hold conversations with people because it takes so much effort. I have constant anxiety that was never this bad. It feels like when you've had too much caffeine and your mind is racing and your chest feels tight. That's almost all the time lately. I have an exaggerated startle response. If there's a loud noise I wasn't expecting my entire body gets jolted and jumps, which is not how things have ever been for me.
On top of all of that I'm 95% sure that I'm at the very beginning of autoimmune diabetes, which was likely triggered by Lyme/EBV. For any of friends that are familiar with lab tests: I found out I'm pre-diabetic ( hbA1c 5.7%, which is weird because I don't fit the phenotype for type 2 diabetes at all), insulin was 2.3 (below range), c-peptide 1.3 (bottom of range), positive zinc transporter antibodies (indication of autoimmunity against my pancreas), and I wore a CGM twice for two weeks and my fasting glucose was anywhere from 90-115, but more concerning was spikes up to 180 after meals and occasionally crashing into the 50s and 60s afterwards indicating dysglycemia.
All of this combined has led to me welcoming death. I'm not able to live a normal life in the slightest bit. I have a terrible quality of life. The past five years of my life have been filled with significant depression and suicidal thoughts. My happiness was swept away just from the nerve pain in my jaw alone, but now all of the rest of it piled on top feels like too much. I want to go to sleep and not wake up.
I'm not able to work a regular job because of how sick I am. I'm consistently getting fevers and feeling like I have the flu and there's no way I could make it into work on those days when it's bad. There are days I'm feeling well enough to work, but that means gig work only which is quite hard to find, especially because I can't really plan anything because I don't know when the next fever is going to come.
I was doing Walmart spark but my car has so many problems right now that I really shouldn't be driving it, and I don't have the money to get it fixed. I'm planning to work on it myself when I have more time but I don't even have the money for parts.
I've been surviving off student loans, which ran out and now I'm surviving off credit cards. I've easily spent over $10,000 in trying to heal myself between all the appointments, MRIs, lab testing, supplements, healing devices, medications, etc and I'm no where close to finished.
I need ~$4,000 for the surgery on my jaw, the Lyme specialist that I'm going to is $500 per appointment which is every 1-2 months and I will be seeing him for the next 6-18 months. It doesn't seem like all the medications are covered under my insurance, he wants me on $300 of herbs and supplements a month, and there are many more tests I need to do to figure out how to get better and what's holding me back. Another $700 Bartonella test, stool testing, mycotoxin testing, heavy metals, just to name a few. All are $300-$500 a piece and insurance won't cover them. Taking my car to get fixed would likely be $2,000-3,000.
I'm already $3,000 in credit card debt and getting close to maxing them out and not really sure how to keep affording this. I'm already living in my van because there's no way I can afford rent.
I opened up a GoFundMe in case anyone feels called to support in that way. This is my first time in my life ever asking for support in this way.
Being able to get this surgery and potentially get out of the nerve pain would be the biggest blessing of my life. So would being able to afford Lyme treatment and appointments, or even getting my car fixed. If someone wanted to buy any of these tests or anything else directly for me instead of money going to GoFundMe that would be just as lovely.
For anyone who has read this whole thing just know I appreciate you deeply! Having people, and especially my friends know what's going on with me feels like something I desire and value quite a lot.
I know people are going to want to give all kinds of health advice but I'm not looking for that, and I would appreciate if people don't give any advice unless they've gone through something personally. That's not the reason I made this post.
I'm just looking for support, empathy, validation, compassion and to be seen in what I'm going through, especially with people who know me in person. Thank you. I love you all.