Surgeries for Rare, Rapidly Progressing Disease

Update 6/8:

Several friends mentioned that it's a good idea to offer other payment options since I would be receiving the full amount of the donation with these options. 

-Venmo: @KristenAcroyoga (no space) (if it asks, the last 4 digits of my phone number are 6828)

-Cash app: $KristenAcroyoga (no space)

-PayPal: [email redacted]

Thank you so much for supporting me in this very challenging time and I can't tell you how much I appreciate you. ♡☆♡☆

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Surgeries and Treatments for a Rare, Rapidly Progressing Disease

Hi everyone,

 

I’m reaching out to the community for your help and support. This level of vulnerability is frightening for me and it takes a lot of courage to post this, yet I know that I need to reach out for help. For years I have been helping to guide others into a life of greater health and wellness. I’ve been sharing recipes, stories of recovery, exercises, yoga, acroyoga, volunteering, performing, nutrition, and inspiration. I’ve been training friends, family, and people in the community. Now I’m struggling with one of my greatest fears. I was diagnosed with a rare gum disease which I’m genetically predisposed to called Necrotizing Ulcerative Periodontitis. I take great care of my health and have excellent oral hygiene habits, yet I still face this disease. They said that there are no biofilms or smells and that my mouth appears clean, but I’m showing other symptoms that indicate that it’s NUP and two specialists diagnosed me with this recently. I need three or more surgeries for infections in my oral cavity that could potentially spread to my brain, heart, reproductive system or the rest of my body if not treated in time. This also affects the reproductive system if not treated in time, which is so alarming because I’d like to be a mother one day. My periods have been irregular lately, which is not normal for me. This is a rare condition that progresses within months, rather than years for normal gum disease, which is why it has advanced so far at my young age. I’m terrified of surgeries and the costs, pain, and changes needed to go through this. I Love to inspire others and help people and to lift them up; I wouldn’t want anyone to feel bad for me; I just know that I need to reach out for help and support. It isn’t easy for me, yet I understand the importance of asking for help when needed. I usually don’t, yet I know that it could really make a difference so here I am sharing my story. ❤

 

I take amazing care of my health, and I have excellent oral hygiene habits, yet I’m still facing this disease. The doctors, dentists, and specialists said that it’s not anything that I did wrong (it’s very abnormal for this to have progressed this far at my young age); they said it’s due to a dysfunctional immune system in this area and due to genetics. I have always thought that I have a strong immune system, and they said that this is where my weakness is (I was also told that it's an overactive immune system). It is an autoimmune disease: I believe in epigenetics and that certain genes can be turned back off. Also, the treatment is shown to stop the progression of the disease. I brush my teeth routinely, floss every night, often after each meal, use the waterpik without exception, and I’m very disciplined about this and have been for years (over a decade). Many people joke that I overdo it with my routines because I floss after meals regularly. I have had great habits and care for all of these years, except that I have not regularly gone to the dentist due to a bad experience with the dentist that was not corrected, fear of the dentist, and fear of spending money because I was trying to save for a home and new car (2009). (I have not been making much for a while and I have been mostly living off of my savings and losing money each month). I was afraid of extra expenses and didn't realize that I had this disease. So there is something that I did wrong, yet I didn’t realize that there were infections, that it was this bad, nor that I had a genetic predisposition to this disease.

 

I had a 3.98 GPA in my Bachelor of Science degree while working full time and paying student loans. My mother passed away when I was 20, and at certain points, I was living out of my car while in 4 honors societies and maintaining my high grades. They said that stress is a factor, and yes, I have had periods of high stress, yet I won’t focus on that. They said that it’s also definitely genetics because the bone loss shouldn’t be this severe even if I hadn’t been going in decades (and it hasn’t been this long). Some teeth look like they are about to fall out in my X-rays. It’s so sad because I take such great care of my body, I cut out refined sugar years ago, and I eat so healthfully with an anti-inflammatory diet, yet I have so much inflammation in my oral cavity to the point where several of my front teeth and molars look like they are going to fall out soon, along with others that are not far behind; I have infections and five teeth that need to be removed, a bone graft (1 at this phase of the surgeries), guided bone regeneration, and a ceramic implant and crown which are more compatible with my body than the original metal crown that was placed years ago and had become infected. This crown was on my first molar; as a child, the dentist told me that my first molars were “soft”; my mother said this was due to a medication that got on them when I was a child. She said that I almost died of a fever in the hospital and that a medication got onto my teeth. From what I can remember, my first molars have always looked whiter than my other teeth due to a lack of enamel, and later, my first molars were “stained,” meaning that they had a brown tint. They said that it’s not from decay; it is a stain. I haven’t had enamel on these teeth since that experience as a child.

 

The root canal was done on one of those teeth while in college. I didn’t know that the crown had become infected. All of this is so frightening and challenging to share; I wish that I would have been checked out sooner; I just had no idea that it was this bad, and I had so many other bills that have needed attention. I’ve been putting my funds into rent, necessities, and saving for a new car (mine is a 2009), yet I’ve been putting so much money into dental care, doctor bills, tests, an occlusal guard, periodontists, and prosthodontists lately. I had no idea that I had a genetic predisposition to these things or the infected root canal and an urgent need for surgeries. I have been doing my best and just didn’t imagine, for a moment, that it was this bad. So many people hadn’t gone to the dentist routinely, and they were fine when they were checked. My teeth are beautiful and in excellent health; the issue isn’t cavities or my teeth; it’s in my gums and jaw bone, which could cause me to lose over half of my teeth without the treatment. I had no gum recession at all until a few months ago and now there is so much recession that it’s frightening. I can see the underlying calculus now; I couldn’t at all before. I have been doing all of the right things, with one major exception, and now I’m so scared. My insurance will not cover major services and I was only offered $2000 in care credit, even though I have excellent credit; it’s due to my current low income. I have some savings, but not much, and this would make me have nothing. I was already losing money monthly because I'm not making much right now. I need a new car (13 years old) and hopefully a home one day. I pay half of rent when I live with a roommate or boyfriend. I have had help with some things along the way, but not with major expenses like the rent, car, insurance, etc. I live alone right now and rent is going up; someone recently purchased the duplex that I’m living in and they wanted more than double what I was paying before. I’ve had many moments of feeling so terrified since learning about this disease. I’m doing my best to deep breath, sleep well, and take care of my mental health, yet it has been challenging. I’m not sure what else to do but to reach out to the community for support. I've been taking care of almost all of my finances for most of my adult life and was doing okay at it, yet I wasn’t expecting news like this. I’d rather not be so independent; it’s just how things have worked out to this point. I think that interdependence is the goal.

 

I have had a hard time asking for help throughout the years and I realize that I need to surrender and do this now. I’m praying that I'll receive the collective support and funding required to have these surgeries done. I promise to continue to stay on track with my impeccable routines and maintenance appointments. Again, this is a rare condition that progresses within months rather than years for most people, which is why it is so advanced so far at my young age.

 

I’m also feeling concerned because I’m aware that another member in this community has recently posted about different but similar issues and requests for support. I was already planning to post this since February, when I learned of this condition, and I pray that this doesn’t cause harm or confusion in any way. It’s amazing how similar our story is and that I saw it right before I was about to upload this; maybe it gave me that last bit of courage needed to upload it and know that I’m not in this alone and that it’s okay to ask for help. I’m also aware that we only have a few mutual friends and have known many different people throughout our lives, most in different states and countries. I always intend the best for others and offer guidance, prayers, Love, and resources and wish the best for everyone.

 

I hope and pray that I will receive the funding and support needed for the surgeries and treatments; I will continue with my impeccable routines and follow up with the maintenance visits. I pray that one day I will be another success story.

 

Please give what you can. Any help is much appreciated. If many give, even a little. It may make a huge difference.

 

If you haven’t met me, I’ll share that many people say that I’m a ball of positive energy. I do my best to help others and bring goodness to the world. I’ve been told that people light up with joy when they see me, and I believe that it’s because I go out of my way to bring care and love to others. Also, it’s a mirror. I’m genuinely happy to see them too.

 

I believed in the power of community, faith, and trust. There is strength in numbers. The more people who can help, the better, even if it’s just a little. I’d love to step out of feeling alone in fear and trust that I’ll be supported. I would like to get the gum treatment and other needed surgeries and procedures. I have seen so many cases where bones have been restored, and I pray that my bones will restore back to health enough to save my teeth, reproductive health, prevent brain infections, heart valve diseases, and the list goes on. I’m taking bone supplements, added certain foods, and I’m doing everything possible to boost my immune system for restoration. I do believe in miracles, and I have seen many cases of restoration. In fact, the gum surgery is the only FDA approved surgery to cause regeneration, bone growth and gum tissue reattachment. It has restored the bone for many people and the research is strong. At my young age, strong routine, and discipline, I have faith that it will heal my tissues and save my teeth. At the very least, it will eliminate the infection and get this disease under control. Along with the maintenance cleanings every three months after the surgery, I should be able to save most of my teeth and eliminate the infections.

 

Please don’t send pity; I’m seeking guidance from elders, or others in the dental profession, stories of healing, and financial assistance. I’m needing time of rest, recovery, and low stress. I’m hoping that there won’t be too many emotional messages and I’d love to keep this positive. Feel free to send donations for support if it calls to you and please send healing prayers; I truly don’t want for anyone to feel sorry for me. I pray that others will share their blessings, faith, and positivity.

 

I would like to raise $7,716 by June 25th and 18,193 by September 25th. Please keep in mind that this doesn't include the crown that goes over the implant which was estimated to be $2000, but I'll shop around and look for someone with a better price. Please let me know if you know of anyone.

 

Thank you so much for your contributions in this most frightening and unfamiliar point in my life. Your generosity is so much appreciated.

 

I know that I’ve helped many people and have touched many lives throughout the years, and this helps me to share these vulnerabilities with more confidence, wishing for the best. I pray for trust and support, knowing that things will work out well. I’ll pray that I can save my smile. I’ve had many successes and failures throughout the years and this one is by far one of the most challenging.

 

I apologize in advance if there’s a delay in responding to messages; the first phase of surgeries will be starting soon. If someone could volunteer to help manage the GoFundMe, I'd greatly appreciate it. This is the first time that I’ve ever done this and I’m figuring it out as I go.

 

Please feel free to share this in your feed. I just ask that you please not ask about this in public right now. I’m trying my best to stay in high spirits at the moment and stay positive for healing, immune support, and a healthy nervous system.

 

Thank you so much for taking the time to read my story and for supporting my healing.

 

Blessings my friends ❤

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Update:

Sorry if the following is long or repetitive. I'm exhausted and trying my best to get everything put together soon so that I have have this done asap. It may not be perfect. <3

I have been doing a lot of research and I recently found a procedure called Regenerative Periodontal Endoscopy. With this procedure, they use a tiny camera to see inside of the pocket to make sure that they get everything out with ultrasonic tools. If anything is left in then there is no bone growth. They also place a protein in there at the end of the procedure called Emdogain to help with bone growth. I have looked at the case studies and testimonials and this looks better than LANAP. With LANAP, they use a laser and also clean things out with ultrasonic tools; however, there is no camera so there’s no way of knowing that everything is out. I asked one professional with the endoscope (one in Florida) if they ever see patients who have already had LANAP and still have the disease and she said “all of the time”. They go in blindly so there’s no way of knowing if everything is out. She said that once they go in with the perioscope, they can get the rest out so that the patient heals.

I asked each of the periodontists if they had before and after pictures of the bone growth and they said that not many people actually see bone growth (a tiny number of people). Their pictures were unimpressive. One said that it’s a way of selling the laser. They post the pictures of the best case scenario, but most people don't see much bone growth. I had faith that I could be one of the patients with bone growth. I now wonder if the reason they they are not seeing bone growth is because they can’t see in there to see that it is all out. One testimonial said she did the LANAP surgery and it was ineffective, they were told that the next step would be the cut and sew method osseous surgery, they opted out of that and did this and had amazing results. I’d like to go to Periopeak because I see their results and I believe in it. It makes so much sense to use a small camera instead of going in blindly.

I didn’t want to go to the one in Florida because they don’t have the Emdogain or the results that Periopeak is seeing and the price is $6000 for the Endoscopy alone; this doesn’t include everything that Periopeak is including. Periopeak said it’s $6500 for everything which includes the procedure, testing for specific bacteria, fungus, molds, (ect), specific gene testing, local anesthesia, the Emdogain, the CBCT scan (like a cat scan), the dentist exam, (I'll add the other things that are included when I can). I would also need to pay for the flight, hotel, and Uber. I will not need IV sedation since this portion would be a nonsurgical procedure. I will be fully conscious and able to function normally. They will use local anesthetic. If we had a friend of a friend in the area who could help out with a ride from the airport and a couch to sleep on, that would be amazing. This would cut out some of the expenses and preparations. They also think that they can save more of my teeth instead of extractions so that would save money in the long run.

Here are some of the results and testimonials:

(I'll add these photos soon- once I figure out how to) for now, I'll place a links.

(RPE xrays) (LANAP, later did RPE review)(12 down to 2)(BBB A+)

Case Studies (before and after photos)  

https://periopeak.com/case-studies/

Testimonials:

https://periopeak.com/testimonials-patients-1/

I would have to split it up and do the rest of phase 1 later that week. So I'd do the first procedure (RPE) in Washingtosn state and the surgery (here), later that week, or in the following week since they don’t offer these services.

I was going to do LANAP (all 4 quadrants), extraction of tooth 30, bone grafting, and guided tissue regeneration in this phase. They also had irrigation, prophalaxis (I asked about this), and a stent on the care plan for $7716. LANAP shows bone growth for some people, but the perio's and specialists that I found had no before and after photos to show this. They said that it only happens for some people and doesn't happen often (one had a few before and after's of a tiny amount of growth). So if I went that route, I might have to do the Regenerative Periodontal Endoscopy later anyways and risk more damage and tooth loss in the long run.

I am now leaning towards the nonsurgical Periopeak treatment plan with Regenerative Periodontal Endoscopy, followed by a separate surgery later that week which includes the bone graft, extraction, and sedation (Total: $1581). This would prepare me to have a Zirconium implant placed later. (The specialists at Periopeak may be able to save my other teeth that were set up for extraction so I could skip the last phase if and when all goes well. We are going to see how I respond to the treatment. I’ll also know more once I have the CBCT scan (similar to a CT scan) and I can see if there are other infections. The RPE is also less invasive than surgery so there’s a lower chance for secondary infections. 

I’m still unsure if I will use the other office for the surgical portion since I learned yesterday that they don’t use PRF with the Augma bone and PRF is important for healing, especially with a large infection. Also, they said they don’t use ozone or chlorohexidine when cleaning the infection out. I may do it anyways so that a decision is made soon. I’d need to decide soon because they require 20% down to set the surgery appointment and they do fill up fast (I’ve been waiting 3 weeks to over a month for most exams so far). I may just go for it and trust that my body will heal ❤ Please lmk if you know of something else without a long waiting period.

 In the meantime, I will be finding a doctor who is more involved in my care. Periopeak may be doing a CBCT scan I assume it’s to see if I have other infections that aren’t showing on the xray. Some periodontists suspect that my other first molar might have one too since it’s at 5% bone left and I’m feeling pain there. I was told by one perio that after the first few phases and healing, they will do a “cold test” on me to see if my other first molar is dead. There’s more about my first molars in my original description.

Thank you so much for your support. If you have any knowledge of bone grafts or know someone who lives near Mount Vernon, WA, please let me know. I learned this morning that the airport that I’ll be flying into is further from the Periopeak location that I thought. I thought that I could fly into the Skagit airport, but it’s looking like it will be further away ( the Seattle-Tacoma airport/ SEA). If there is a friend of a friend in the area that could help out then this would save on Uber prices and the hotel. They said that due to the severity, I would need to be there for two days instead of one. I would also like to get there the day before the procedure and the day after.

I will update the totals when I find out. There are so many uncertainties so it’s so hard to predict. I’m just going off of the treatment plans in each moment which is why I left it at $7716. It’s actually looking higher now with the new procedure, but this may go down overall since I may not need other extractions. It may go up depending on how I respond and heal. For now for phase 1: the costs are $6500 + 1581 + airfair, the hotel, and uber.

Keep in mind that I have not included the blood tests, doctor fees and their treatment plans, all of the exams that I’ve already done, medications, medicated mouthwashes, supplements, the osseous guard or many other things. They also want me to find a new doctor who is more involved in my care to help to figure out how this got so severe. Several specialists have said that they have never seen this in their entire careers.

I do feel good about this treatment plan, whereas with the others I was literally trembling like a dog in the exam chair and researching for more options after making it back home. The options that I had did not feel right at all. I kept asking a million questions and asked if they can see in there to get it all out. One said "we don't need to see in there with the laser", yet with the laser (LANAP) there's still a need to scrape everything out, otherwise the bones won't grow back and the bacteria could recolonize. I'd prefer the treatment where we can see in there and get everything out so that I can heal and restore.

My top priority for now is getting this procedure scheduled, getting the airfare set up, and the hotel.

I know that this is a lot of info and that I’m so detailed; I have been trying my best to keep it short, yet this is just how I am. It’s a lot for me to take in and process too. I think it’s best to post updates as I go considering all of the uncertainties. If you have made it this far, thanks again for your support and I’ll do my best to keep everyone updated as I go. I feel like this is all of my fears packaged into one and I’m going to keep doing my best at navigating this the best that I can. Thank you so much for being here ❤

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Update: The Uber price is estimated to be: $141.97 per way from Seattle-Tacoma airport ($283.94) to Periopeak, plus I would pay to go back to the hotel each night in between appointments (3 or 4 nights total - depending on what's available for decent ticket prices) 

The hotel price:

The airplane ticket price: I found one for $1193. They are all very expensive right now. I found one for less, but there are so many stops and I would arrive at 8:50 on the day of the procedure. The airport is over an hour from periopeak. Is anyone good at finding lower prices for flights? Does anyone have mile discounts that will expire soon if not used?

I'll add these later. I'm doing my best to take this one step at a time. Thank you so much for your support. 

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Update:

I’ve purchased the plane ticket and have a friend of a friend who is willing to pick me up from the airport and take me to the office for the procedures next Tuesday and Wednesday. Thank you so much for all of your help everyone

Regenerative Periodontal Endoscopy: $6500

Plane ticket for the procedure: $1096.20

Oral Surgery in the following week: Prosthodontist: $1581.00 (I’m trying to get in with an oral surgeon. I have an appointment this Friday to meet with him for the exam and prices. I’d like to work with him because they have the Gem21 bone grafts. Gem21 is biocompatible and contains growth factors that stimulate healing.

I’ll be flying to Washington for the first procedure next Monday. Monday the 13th of June.

There are more details about the success of this procedure above including links to the before and after pictures showing bone regeneration.

Total by June : 13th: $7596.20

By June 18th: $9177.20

Thank you so much everyone for all of your help. I appreciate it so much

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Update July 7: I've been waiting for someone at  the oral surgeon's office to get back with me and they called yesterday. I'm so relieved. The surgery is on for this Friday, tomorrow. Please pray for everything to go smoothly

Thank you so much everyone for all of your support

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Update July 7:

Here are the estimates for the next surgery (the 3rd procedure). I've been taking it one step at a time and haven't shopped around for better prices for this step yet. It's based off of the prices from a few periodontists and a holistic dentist. If you know anyone who has better prices and great reviews, please feel free to share

-Zirconium implant + everything needed (CBCT scan, Abutment, Sedation, etc): $7000

-Nonmetal crown: $2000

This is just a quick update. I'll add more details sometime after tomorrow's surgery once I'm feeling better. I'll also edit this once I meet with the next surgeon who has the Zirconium (nonmetal) implant for the exam and treatment plan. I have called several places and I'm leaning toward one, yet I'm taking it one step at a time and decided to do that research when the first 2 phases are over.

Thank you so much everyone for all of your support