Lyme Update, August 30, 2017
It’s Lyme! – “Dedicated to the awareness & diagnosis of Lyme Disease through shared experience.”
“Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as Chronic Fatigue Syndrome, Fibromyalgia, Somatization Disorder and anydifficult-to-diagnose multi-system illness.” Source: ILADS (INTERNATIONAL LYME AND ASSOCIATED DISEASES SOCIETY)
Lyme Update, August 27, 2017:
On Lyme – “Our mission is to increase knowledge about, relevant research of, valid tests for and effective treatment of Lyme, by connecting all different groups with knowledge in this complex and tense field.”
The Amber Lily Fundraising Announcement:
This spring, from March 20th to June 19th, all the profits of all seeds sold through The Amber Lily will be donated to a friend of mine, Karli Bergen, and her family, as she heals from Lyme disease. Other donations can be made at the Bergen’s Go Fund Me page.
I’m Karli, a 30 year old stay at home mom to two amazing little boys. I’m married to Lonny, a hard working, super supportive husband.
Almost a year and a half ago, after the birth of our second child, Presley, I noticed something was very wrong with my back. I was in pain 24/7 and had no idea why. I went to my doctor, who wasn’t entirely sure what could be causing it but suggested starting physio, chiro and going on addictive pain medication. I did this for months and my symptoms only got worse instead of better. I went back to my doctor and asked if there was anything else we could do. He suggested keeping up with what I was doing and told me to make sure to take the pills I didn’t want to take while taking care of my children. The pills made me feel out of it, but still in pain. One time i passed out after taking one pill, with both kids in my care. Needless to say, i don’t take them anymore… I left the clinic in tears that day. The pain got so bad that I would end up in bed waiting for my husband to get home from work almost every day so he could take over looking after our boys. There were many nights I would lay in bed crying from the amount of pain I was in, begging my husband to let me take everything I had stashed in my bedside table. Of course, he did his best to make sure that didn’t happen. I went back to my doctor numerous times, finally getting him to agree to an MRI. While waiting for my referral to go thru, I went to physio, acupuncture, chiro, massage, even a neuro surgeon and physiatrist… all numerous times. Three separate ER trips in between, all with no relief and no answer. My first MRI results came in saying there was a spot of concern on my spine, and I was called back for a second. I felt a bizarre sense of relief thinking maybe an answer was around the corner. No matter what it was, I felt like as long as the cause was found, it was progress and something to embrace. I was wrong. The first MRI showed something, but the second didn’t. So, the unrelenting, painful mystery remained. What was going on with my back that could be totally disrupting our lives? How do I fix this? How much longer could I live like this? Those questions plagued me and my husband for over a year. Doctors were not taking my pain seriously and my depression worsened. Then, a friend told me about Lyme disease and that so many of my symptoms matched up. She told me I would most likely be met with skepticism from doctors as Lyme isn’t well recognized yet in the medical community. So, with hesitation and a lot of guts I asked my doctor for a Lyme blood test. The Canadian blood test is very simple, generic and not in depth. There are many co-infections that can be involved with Lyme, and the Canadian test doesn’t look for any of them. So, like almost everyone else who ends up actually having Lyme, I tested negative on the Canadian test. In order to get a complete Lyme test, I would need to get my blood drawn here and send it off to a lab in California called Igenex. These tests cost money. Money our family doesn’t have. We have been contemplating asking for help for over half a year… but the time needs to be now. My symptoms remain, and are now progressing and evolving… into chronic headaches, dizziness, fatigue, tinnitus, and more. We need to figure out what’s wrong. If we can rule Lyme disease out, we can focus on other possibilities, and vice versa. We need our quality of life back.. It’s been gone for far too long. Our children need their mom back, and my husband needs his wife to be healthy and happy, and able to function. Again, this isn’t easy for us to ask, but we have decided to put our pride aside for now. Thanks for reading this. If donating isn’t a possibility, just the acknowledgment that chronic pain is real is more than enough for us. Thank you!
Thanks to friends, family and even complete strangers, our target has been met! We are blown away by the amount of support we’ve received and how soon it all happened! We can’t thank you all enough. This money will allow me to get tested for Lyme and co-infections without having to go into any more debt and for that we are incredibly grateful! Last year we spent over $6000 just on my medical appts to try and keep my pain at bay. That was money we didn’t have! I will keep you updated on the testing and the results. If it turns out positive, this will lead to treatment options that will help me tremendously. And if it’s negative we can move on to other possibilities without having to wonder if this was the true cause for years and years. So many people who actually turn out having Lyme are misdiagnosed with conditions like chronic fatigue syndrome, fibro, MS, and more for years before they find out Lyme was really to blame. I can’t express enough how much weight has been lifted off my shoulders by your generosity. You are all amazing people! Good karma is coming your way 🙂 THANK YOU! Love Karli, Lonny, Liam and Presley Bergen. <3
I have Lyme Disease. No co-infections (which is actually what I THOUGHT I would have… Not Lyme). But, apparently having Lyme disease is easier to treat than the co-infections, so I guess it’s kind of good news. By CDC standards, I’m negative (like pretty much everyone else who actually has Lyme disease). But, according to Igenex and everyone else, I’m highly positive for Lyme.
So, what’s next? For now, I have supplements for inflammation and pain. These set me back almost $300 (including my appt). I have to make an appt with a Dr. In BC to get antibiotics. My Dr is guessing minimum of 3 months, but most likely 6 or more. And I only have to make the one trip. After that, I can get refills by phone. Thank God. The bad news – in most cases these antibiotics are, for whatever reason, NOT covered by benefit plans. This makes me so mad I can’t even think of any words for it… More bad news – my two little boys most likely have Lyme also… And I don’t even know how to wrap my head around this… I feel a lot of guilt.. And my husband. He could have it too. 🙁 My mind is spinning today. I do feel some relief because I have an answer, but I feel angry and sad too. I’ve had this for about 20 years and didn’t know it because these little f@c$ers can hide out and play tricks until you have some sort of traumatic event hit you. But so much makes sense now. Not being able to sit comfortably to watch a movie in theatres because my knees would ache, as young as I can remember. My anxiety and depression since that time too. The migraines I got in elementary and highschool from time to time. My lack of energy and fatigue and insomnia. And now the chronic headaches, back pain, bone pain and stiffness. The tinnitus, chronic sinus infections, weird skin problems, and pins and needles and bizarre vibration sensations in my body. It’s not in my head at all. It’s in my blood. That’s all I can seem to muster up today. Thanks again for all of your help and support. Love Karli and her boys. Xoxo
My trip to Ottawa for the conference went really well. I met so many ppl going thru the same thing. It was incredibly sad listening to their stories, but it was so important to get all of these patient stories on public record. I learned a lot about Lyme disease. It was an overwhelming few days in many ways, but I’m so happy I got to go. Hopefully something positive (besides new found friendships) will come from the conference. We need so many changes to happen in our health system in regards to this disease. It’s painfully obvious now. I’ve booked my trip to Vancouver to see my Dr to get my treatment. It’s coming up so fast, which is exciting buy nerve wracking too. I wanted someone with me in Ottawa (so many had a support person with them). And now I’ll be in Vancouver without my boys too. I feel guilty, and somewhat alone in my journey. But we gotta do what we gotta do, right. This disease is so many things. Isolating and financially devastating are right up at the top of that list. I really hope things are different for the next generation. Nobody suffering from a debilitating disease should have to navigate the medical system on their own, go thru being made to feel like we are a nuisance over and over again by doctors. I could go on and on about all the injustices people with Lyme face, but I’m too tired. We have to try to keep hope alive. With as little energy as I have, I can’t focus on the negative. I’ll update you on treatment after my trip to Vancouver. Cheers friends.
I have recently been taken off of antibiotics by my naturopath in bc due to some adverse side effects from long term antibiotic use. I’m currently working on getting my gut healthy again, with probiotics of course, parasite cleansing, to help with gut issues and also help the antibiotics better be absorbed by my body. It’s a bit complicated. But in short, Lyme has 3 different forms. Spirochetes, cystic and cell walls. In order to get every one of those taken care of, you need to approach treatment in different ways. The bacteria like to hide from antibiotics and can actually mutate to do so. This is why do many treatment forms are necessary to get the job done with chronic Lyme. There are numerous supplements that can aid in this process, which I’ve been doing for 6 months as well. It’s essentially like trying to get rid of bacteria that has been building up in my blood and entered almost every organ, tissue etc etc. It’s a massive undertaking. It requires a lengthy, complex treatment… and right now, that looks different for every Lyme patient, because of course, we are all unique.
That being said, I’ve decided to be referred to a Lyme specialist in Calgary who treats patients with chronic Lyme and really knows what he is doing. The wait list is long. About 8 months. So, in the meantime I will be continuing with my Lyme literate naturopath in BC. I think he’s phenomenal. But I think two of them working with me is my best chance at giving my boys their best Mom possible back. That’s my update for now. It’s a pretty happy one! I’m really looking forward to Calgary, but for now I’ll keep trying my best to make my body as healthy as possible with my NDs recommendations, along with clean eating best I can, and much much more. It’s not been easy, but hopefully this will all be with it someday. Thanks so much to everyone who has been following my journey and supporting me. It’s meant so much to me and my boys. Love and health to you all! Help spread the word!
Hi friends! … Anyway, I wanted to just let you know that I’m now in my 9th month of treatment (that sounds so long!), and it’s very slow and not that steady. I have days where I feel better than I used to a year ago, so I know that something is working. But to be honest, most of my days are still very trying. I’m physically and emotionally spent, and so is my husband. This disease is a real test of your strength, in both your own body and spirit, as well as for your relationship(s).
My husband has been, for lack of a better word, my caregiver, this entire time. Not only to me, but our children. I don’t know where we would be if not for him, but I try not to think of that. He is an amazing support, but he is tired. And I’m tired of it all, too. But, we can’t give up. And so, the next treatment step is to start doing injections of antibiotics, instead of orals. This route is taken when oral antibiotics are having am adverse effect on your stomach, which they are, despite all the probiotics in the world. I’m not looking forward to these needles. It isn’t a liquid. It’s a creamy substance, that takes about 4 minutes to inject, and usually leaves quite a swollen lump. I’m also not looking forward to the financial aspect. Right now, that part is uncertain. If my GP were to prescribe it, I would have the injections done and covered by MB health, no problem. However, I do not get in to see a Lyme literate doctor in Calgary (who isn’t my naturopath in BC) until this summer. So, these injections, as I understand, will have to either be done at a naturopath clinic here in Winnipeg (which costs money), or perhaps by my husband. I’m not sure yet. But that will start within a few weeks. Tomorrow I finally start rounds of trigger point injections into my back at the pain Clinic in Winnipeg. I’ve being waiting for these for 2 years! Up until now, I’ve had to pay for them out of pocket (so it didn’t happen much). …
Last May, when my journey began, I attended the conference to develop a federal framework for Lyme Disease in Ottawa. Hundreds of patients got to go have their say, tell their story, and try to convince the powers that be, that Canada needs to make changes in the testing, diagnosis, and treatment of this disease. This was just when I was first got my test results back, and let me tell you, I learned more in 2 days about a disease. And what I witnessed was horrifying. I am still in shock, somehow, at how many peoples lives have been torn apart. It was the most heart – wrenchingly emotional thing I’ve ever been a part of in my 31 years, next to the sudden death of a close friend 7 years ago. There was not a dry eye in the building, and there was not one patient who had anything positive to say about how they’ve been treated. It turns out, as we thought (but were holding a glimmer of hope for), that this conference changed nothing, and was pretty much just to placate us. The powers that be are still denying the existence of chronic Lyme, are allocating no money to help us out, standing by their old testing and dogma, and turning a blind eye to a serious problem that will only continue to grow … and now we only have until March 1st to try to get our voices out there. We need your signatures. What our government is doing is criminal and this “new” framework will only continue to perpetuate suffering in our endemic country.
If you have another spare moment, please sign this petition and share it if you can. Myself and thousands of others need you! Nobody this sick should have to fight so hard for humane treatment. Nobody. Help spread the word!
Here’s what’s new.
-was supposed to start injectable antibiotics (bicillin) this month. But my dr decided to try a pulsed regimen of 3 oral antibiotics.
– one of these antibiotics isn’t cooperating with me at all. It gave me severe dizziness, that left me pretty incapacitated for almost a week (which means I couldn’t look after my kids), so I had to stop taking it. I’m still on the other two in the meantime.
– I’ll be starting IV injections of glutathione on Monday March 20, to help my body endure the liver stress (from meds) or disease (Lyme) because with Lyme, you have significantly less glutathione. So it will help me in a few ways. It prevents brain and nerve damage. Rids you of health-threatening toxins. Protects you from DNA-damaging oxidative stress. Promotes longevity by protecting telomeres. Boost levels of active, protective glutathione. Improves the ratio of active versus oxidized glutathione. IVs of glutathione can be tremendously helpful for Lyme symptoms as well. It can give you energy, which we all know I desperately need more of.
-I will be getting these IVs and possibly other ones later, every two weeks for at least 3 rounds. Each round costs approx $110. If after 3 rounds, I’m not finding it helps, I’m to stop. If it works, you’ll know it. No need to keep going if it isn’t working for you.
-I’m also on many expensive supplements such as liposomal vitamin c, serenagen, tinctures like Japanese Knotwood and cats claw. And I would like to keep on them if at all possible. One box of liposomal vitamin c for instance, costs $45. That lasts me fifteen days. So monthly that’s another $90. Plus being on the necessary supplements and my recurring appts. Just the last two are in the hundreds per month. All in, this new stuff will cost us about $500-600 per month.
– I’m getting injections in my back and neck every two weeks to try to help with pain there. Thankfully, these are covered by MB health. Finally!!
As you can see, everything is really adding up again, but me and my dr think I need to go in as hard as I can and try to give it my best go. It’s time to get better. But having your help would very much make that more possible. We are having a hard time getting me better on one income (my hubbys). That one income is supporting two adults and two growing kids. As well as my treatment. We have no breathing room to do much else. It’s a struggle to get better, only accessing one part of my recovery. (Antibiotics.) With IVs and herbal protocols, combined with my antibiotics, I feel it could be a winning combo. But I really don’t want us to have to go even deeper in debt doing so. Any donation, whether it’s 5 dollars, 50, or 500… Would help us out tremendously. Also, if you want to donate, please feel free to send email transfers to forego the percentage this page takes from each donation. My email is firstname.lastname@example.org.
Thanks so much for taking the time and caring enough to read this. It means a lot to me and my family. Please donate, but only if you can. That’s why there’s the option to donate $5. Every 5 dollars counts. Every single dollar counts actually. Cheers to health! (I hope someone got to enjoy some green beer this St. Patricks Day!)
Sincerely and gratefully, Karli and family.