It’s difficult, if not impossible to explain the misery one with Late Stage/Neurological Lyme Disease endures. Words just don’t seem adequate. I will give it my best shot, though- solely to help loved ones try to grasp what we deal with, as well as help other Lymies feel like they’re not alone and that there is hope. No part of me is looking for sympathy- only awareness and an attempt for others to understand how destructive this disease is, if not caught early. It can be deadly. Please take prevention and early detection seriously.
I remember my darkest days (sometimes weeks) as the most excruciatingly painful, terrifying, and seemingly endless times in my life. Sure, I would have good days once in a while, but my standards for ‘good’ were so low, most people would probably cringe if they knew what I was dealing with. On my worst days, I felt like I was going to die, and that is no exaggeration. My health had deteriorated so quickly that I was literally bedridden and could not even get up to get myself water at times. I was completely dependent on my parents to care for me, which is something I never envisioned my life would be at 28.
Aside from fighting a horrible illness, one of the hardest parts about having this disease is that people just don’t understand it or know much about it (doctors included). Lyme Disease is an invisible illness- people can’t see the symptoms, so they don’t believe they’re real…or maybe they do believe it, but they think we’re exaggerating. They don’t realize that it really and truly destroys every part of you. Also, many people don’t understand how we can have good days and bad days. They assume that if we’re sick, we should always be sick, but that’s not how this disease works. Sometimes it flares up, and sometimes our bodies are strong enough to fight it. I don’t understand it either, but that’s the way it is.
Anyhow, I was staying with my parents, who took such great care of me (and still are) and have continued to love me unconditionally through all of this madness. One of the worst things was seeing how much it broke their hearts to see me in such a horrible condition and be unable to help. If no doctors could or would help me, how could they? There were times when all I could do was lie in bed with tears streaming down my face. I was in so much pain I couldn’t even move or talk.
I was having constant fevers, vision problems, hallucinations, memory loss, confusion, chest pain, trouble breathing, etc. I could feel needles stabbing me all over my body, even in my eyes. My muscles felt like they were being ripped apart by knives and burning on fire at the same time. Then came the joint pain- intense aching in my wrists, hips, knees, ankles, etc. Sometimes I’d also be itchy, or I’d feel like worms were crawling under my skin (which drove me absolutely crazy). And then there were the muscle spasms and the crushing pain. If I tried to get out of bed, the soles of my feet were so sore, it was unbearable to even stand on them. Oh, and painkillers were absolutely useless. All pharmaceutical drugs I tried seemed to do nothing.
I could feel the Lyme attacking my entire body and mind…it had taken over. I was having severe anxiety and panic attacks (who wouldn’t?). I was at the point where I couldn’t even carry on conversations at times- or I’d be looking at someone who was speaking to me and be unable to process anything they were saying. I was trapped in this hell inside my body. I was hopeless and felt like there was nothing that would ever be able to save me. I thought I was too far gone and I honestly don’t know how much longer I could have lived in that condition. Also, my insomnia was so bad that I couldn’t even sleep to escape the constant pain and misery (I was taking high doses of Ambien, but would still lie wide awake in agony). I could go on, but I’ll spare you any further details. It’s difficult for me to write about this, and I’m sure it’s difficult to read.
Deciding how to treat this monster was quite the challenge. So many with the ‘Western Medicine’ mindset have tried to push me to do a short course of antibiotics. I have NEVER taken any antibiotics for Lyme, and probably never will. A short course of antibiotics is not enough to eradicate the disease (and is all most doctors will prescribe), and I see the suffering caused by long term antibiotic treatment.
My client (my angel)- the one who got me accurate testing for Lyme, also recommended that I try this supplement called Mitosynergy. Her son is a few years older than me and was bitten when he was only 3 years old (poor thing). I think it took doctors (and he had probably been to hundreds) about 20 years to diagnose him, and by that point he was almost dead. He did the IV antibiotic treatments and tried almost every other treatment available. Nothing helped him, at least not for long. If anything, some of the treatments prolonged or increased his suffering and almost killed him.
When I first met my client’s son, he was VERY ill (this was before I knew I was sick). I had heard about his condition, but couldn’t imagine all he had been through, especially being sick for almost his entire life. I have now seen the horrors of this disease and it breaks my heart that anyone would have to suffer so greatly, but a child? I could barely handle it as a full grown adult.
Anyhow, my client’s son had been taking Mitosynergy for a few months, and every time I saw him he said he felt better. He also looked so much more healthy and happy. If he could come back from how sick he was (which was much worse than me), then maybe I had a chance. I started on the Mitosynergy, and because of my client’s son, I finally had some hope.
My client warned me about the herxing, which is basically a worsening of symptoms due to treatment (if you can imagine anything worse than what I previously described). What happens is that the treatment causes the bacteria to die so quickly, your body can’t get rid of the toxins fast enough, so it makes you feel much worse before you start to get better. That was really, really tough to go through- especially because you wonder if the treatment is helping or if you’re just continuing to deteriorate.
It took at least two months or so before I started feeling better (some people feel better after just a month or even less), but I was VERY sick, and had been for quite some time. Mitosynergy saved my life, but I really owe all credit to my client and her son for getting me the right testing and introducing me to Mitosynergy. Without them, I don’t even want to think about where I’d be today.
Mitosynergy is made from natural ingredients, and basically helps to get your cells to process energy properly (which they were unable to do before). It has helped people with all types of chronic pain (Lyme, MS, Fibromyalgia, CFS, spinal cord injuries, etc.). Before my liver surgery, almost all of my Lyme symptoms had lessened or completely disappeared, and without ANY side effects. I still had a few lingering symptoms, but I was starting to feel alive again! 🙂
My fear was that post surgery, my symptoms would return because of the trauma on an immune system that was already compromised. I was hoping I’d catch a break, but have been experiencing increased symptoms (a relapse) since my surgery. However, it is nothing as severe as what I was once dealing with. My hope is that these symptoms do not get any worse, and will disappear as I continue to heal from surgery, and I will be completely healthy soon. I am very hopeful and optimistic about the future. I think I have survived the worst of this and I finally see the light.
I am still seeing my LLMD, and may start taking the Byron White formulas again (also all natural) for detox and treatment of co-infections. I had started the Byron White formulas just before finding out about my liver mass, at which point I stopped taking everything other than the Mitosynergy.
If you suffer from Lyme or any sort of chronic pain, please consider trying Mitosynergy and give it at least a month to see the benefits. I cannot express how much this product changed my life, and so many others have similar stories. Please let me know if you would like more information.
We are so glad to hear about your progress. I have a book that would also help in your recovery Qui Gong. Would you like to look at it? I could drop it off to you and follow up with how to do it.
Thanks for your kind note to us. We do want to have you over to the cottage when it warms up. Keep strong in your progress.
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Wow that is an encouraging story, I am glad you have made great progress! The fact that you had liver surgery makes me cringe, I hope you have jump started your healing process again. I am sorry that you relapsed. One thing that you have got going for you is your positive attitude, it’s so good to read a story from someone with a great perspective on life, even in a rough situation. Who knows maybe in the next few years there will be a proper way to treat this disease, but in the mean time there is always hope. You are on my prayer list!
Thank you so much! I know you’ve been dealing with this monster, too, and I hope you’re doing well, healing, and staying positive. Do you have a blog? I want to educate everyone I can about this horrible disease, fight for the rights of Lyme patients, and hopefully help in changing the way Lyme is (un/mis)diagnosed and treated. Keep hoping, and keep fighting!
Howdy! This blog publish could not be written any better! Reading via this post reminds me of my previous roommate! He continually kept preaching about this. I most definitely will forward this post to him. Fairly certain he will have an excellent read. I value you for sharing!
Are you based in the uk? I think I may have Lyme but trying to get tested is hard my gp doctor won’t test me but also heard its fairly inaccurate anyways. Can you point me in the right direction I live in East Yorkshire but not sure where I can find a llmd. Your help would be much appreciated.
I’m actually in the US, but yes, I’m sure the test they use is horribly inaccurate. Have you seen the documentary ‘Under Our Skin’? If not, I highly recommend watching it. The most accurate test I’m aware of is the Western Blot IgG/IgM. I had my blood sent to the Igenex lab in California. There are only a few labs in the country that do this testing, but from what I know, Igenex is the best. My advice for you would be to contact Igenex and see if there are labs in Europe they could recommend. Of course, insurance wouldn’t cover it, so I had to pay out of pocket for this testing (around $250 USD). Do you know how long ago you were bitten? The problem with the Western Blot is that it is not capable of detecting the Lyme, but it can detect antibodies to the Lyme. Therefore, if you were bitten recently, you may have Lyme, but there’s a chance you wouldn’t have enough antibodies for it to show up yet. Also, I know there are different strains of Lyme in Europe, so I’m not sure if they would use the exact same test for you. Your best bet would probably be to contact Igenex or possibly someone at ilads.org (an international organization that is very progressive and has really fought for the rights of Lymies). I wish you all the best! Please keep me posted:)
I was bitten back in 2011 but didn’t start getting symptoms as such until march 2012 my symptoms were dizziness migraines, numbness, pain, etc then April this year I got skin issues tender skin to touch like I had been burnt but nothing to look at. I get crawly feelings, itchy feelings, nettle feelings, spark feelings burning inside my body burning / sore feet. Jolts / twitching vision problems etc. I have a test kit from igenex but waiting for the funds so I can get it done. I emailed igenex before and they said they have a lot of people from the uk who order the test so I’m sure it’s the right path. Our tests I think they use to ELISA one first which is very inaccurate and only if a positive comes up they they test via the western blot. So it’s very hit and miss her. We don’t have many Lyme doctors either in uk so if I had Lyme then treatment will be hard to get but better to know what I’m dealing with. X
Yeah, it’s the same way here, and the ELISA misses most positive Lyme patients. So infuriating! Lyme should be a clinical diagnosis, anyhow. I’m no doctor, but those sound like a lot of Lyme symptoms to me. I’m so sorry to hear of anyone dealing with this horrible disease. Keep me posted on what you find out/ your progress, and let me know if you have questions or anything. Be well and stay strong, xx!