Lyme Disease

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Hello! I’m Officially Your New Co-Leader!🥳🌻🥰

My name is Wendy, and I have been an active member on The Mighty for a few years now. This is my first time being a group leader, and I am so excited and honored to serve in this capacity.

I am a positive, vibrant person who lives with M.E./CFS, fibromyalgia, Epstein Barr Virus, hypothyroidism, and multiple chemical sensitivity (MCS). I have been sick for 20 years, but my illness progressed throughout the years, to where I could no longer work, and now it’s been five years since I worked. As you well know, living with chronic illness changes everything, but I insist on living my best life everyday and enjoying what I can!

I love movies, hanging out with family and friends, unique tasty foods, working on my YouTube Channel, gardening, rich conversations, and being creative!

I want the best for us all and wish you peace and love on your journey!🌻💞Wendy #MyalgicEncephalomyelitis #Fibromyalgia #ChronicEpsteinBarrVirus #LymeDisease #MultipleChemicalSensitivity #HypothyroidismUnderactiveThyroidDisease #MentalHealth #ChronicIllness #CheckInWithMe #DistractMe

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I received some more bad medical news today. I wasn't mentally or emotionally prepared for it and I need time to process the information. I'm terrified, devastated and it put me into an immediate depression.

My chronic Lyme Disease seems to have never gone into remission, like I thought. I'm still infected with Chronic Lyme and Bartonella, assuming Rocky Mountain Spotted Fever too, but that one wasn't tested. I have a lot of unresolved trauma from treating my Lyme disease, and suffering for years.

It took two years to get that diagnosis when I was in my early 20s, having insane symptoms and that's when the suffering really started. I was 21. I started treatment at the age of 23. It was hell, the treatment was intense, painful and made me much sicker. I didn't have the long list of diseases and complications that I do now. I was also much younger and had more energy and spirit then.

Going through that again, with the body and physical ailments I have now, it's seriously frightening. I'm devastated that I didn't find out sooner. I knew that Lyme Disease caused a massive amount of damage in my body, I didn't know that it was still doing that to this day. It's a ton to process for me. I was 24 when my treatment ended. I'm 38 now. I'm feeling hopeless and I have already been tired of fighting. This body doesn't seem to want to live. It's very hard now, the idea of making it harder isn't fathomable to me right now.

I stopped reacting to new diagnoses a long time ago. The last time that I was truly afraid and shocked was when I had a Pulmonary Embolism in 2018. I survived. They are normally deadly. I remember getting the call 6 months later that I had a rare autoimmune blood clotting disorder and a genetic clotting disorder. Blood thinners for life. I didn't react. I literally laughed on the phone. Not because it was funny or not serious, because I couldn't take it anymore but I also wasn't even surprised that something else was wrong. Another one to add to the list.

I had internal struggles when I thought I had lung cancer in 2021. But I knew that I would fight it and I had a plan to be strong like I always am. 5 months later, I found out that it was Sarcoidosis. Also rare and can be deadly. It's a terrible disease. Add it to the list. Later in 2021, Autoimmune Polyneuropathy all over my body - small and large fiber nerve damage everywhere. I was just happy to get it over with and have it in writing finally, rather than my doctors and I just assuming that's what it was. I seem to get a new diagnosis every 12 to 24 months. I've grown used to it.

Today was different. I'm at my max. I just had my nerves burned from my spine a week ago. I'm still in recovery from that. My doctor gave me steroids while I was under without my knowledge or consent, knowing I'm allergic. I don't know why this is my life and why I was chosen to live in my own personal hell since childhood. I started crying while the doctor was talking about treatment options. The idea of going through that again is what set me off. I told her that I barely want to keep fighting now. I don't want to make my life harder.

Yes, I get depressed very often in the last year. I'm overburdened and overwhelmed. I'm angry and I'm sad. I am scared. I live one day at a time. Making distant plans is hard for me. When I get my handouts emailed to me for my intensive trauma class 24 hours prior, I don't even look at them. I don't know what tomorrow brings. I'm here today. Everything that is planned must be in my calendar or it's not real to me.

I hold onto those bit of love that I have in my life. That's what keeps me going. My animals and the important people in my life that share love and compassion with me.

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Ways to make friends

I have social anxiety and a chronic illness so I don’t leave the house unless it’s a family outing. I’m 19. Not in school. Basically I’m disabled. I’m so lonely. I have some online friends but still I feel so alone as they’re busy a lot. Anyways any ideas on how to make friends within my comfort zone? I won’t just overnight start going to a social group. But within my limitations I need a way to feel less alone. Also I don’t like using social media it makes my anxiety worse. #LymeDisease #SocialAnxiety #Loneliness #Depression

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Flare Friday

I accidentally gave myself a double dose of MSM this morning which I think led to today’s flare, but this painting has got me wondering if Medusa was actually another misunderstood Spoonie 🤔

#DistractMe #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #Lupus #LymeDisease #Endometriosis #EhlersDanlosSyndrome #CrohnsDisease #InflammatoryArthritis #MyCondition

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I'm new here!

Hi, my name is Heterodyna. Actually, that's a nickname my father gave me a long time ago and I like it better than my actually name. I came here out of curiosity and loneliness. I have been ill for 9 years now but got my diagnosis last year. It's chronic Lyme disease which for me occurs as chronic pain and numerous neurotic complications. There are some people in my life that care for me but it kind of feels lonely none the less. They are all healthy, they cannot understand how it is to wake up in excruciating pain and you must keep going. I feel lost. I don't know what to do. In my country, getting bitten by a tick is seen as much less important than cutting your thinger by a postcard. Only a few doctors treated like heretics by the rest of medical community. It took me so much time to realise that I am in need of help, not exaggerating, not seeking for attention. Even though I was the one who felt the symptoms, who fell into that bottomless den of pain and exhaust, all of the doctors for years told me I'm just lazy or dramatic. I want to know if there is someone out there who could make me see that I am not alone. I want to feel less odd and more like "normal" as my normal does not mean the same for my friends and family. It's my first time doing something like this, especially on the Internet. It feels weird but I'm joining this site in the middle of a breakdown, contemplating whether to take my painkillers or if maybe I could manage for now. Too desperate? Sorry, that's how I'm feeling right now. Maybe next time I'll do better. I just would like to exchange some experience or get to know someone in similar situation. Please, take care of me🙏🏻


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We are in need of a new co-leader for MHC to encourage, empower, & support our members. I make a APPEAL to current members - PLEASE read below!

We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We are growning fast and just passed 2,200 members. This is really exciting to me, however to be honest, I have been very frustrated that there is less activity recently and as our membership grows steadily the number of comments & replies has actually diminished. Our old co-leader Chris is no longer with the group and we need to have others step up and make up for her commitment to regularly respond to posts and comments. This means a collective effort from everyone in the group! I have had numerous layers of serious physical & mental health challenges recently and not been as active as I would like in order to step back and focus on self-care. This is a time having another co-leader to pick up the slack is essential!

My last post about hobbies was actually first posted 16 months ago (when we had at least 1,000 less members) and it got over 200 ❤️ & 👍and 100 comments then! It got only ONE this time. And Laura made a great post about disability after that and it got only two responses as well. When new members open up and post to introduce themselves and then get very little response that is even worse. I fear that new members will see this and not be active moving forward. This is OUR group everybody and it functions best when members support other members. We all have our varied health histories and with them the knowledge and wisdom we’ve garnered along the way! PLEASE let’s share these with each other. Without this empathy and understanding this group is falling short of what I first envisioned when I started the group and what it’s capable of.

For a co-leader I am looking for someone to welcome new members, comment or respond to posts and other comments & replies, and make new posts to the group. It is important for the group to have distinctly different voices to support people because people might relate more to either of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.

Offering your own posts provides more content for the group. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like, will comment on your posts to get the responses going to best support your efforts, and I can help finding memes or images.

I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people.

You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from your personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!

In service,

#Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #BipolarIIDisorder #Bipolar1Disorder
#ObsessiveCompulsiveDisorder #ADHD #Schizophrenia #AspergersSyndrome #Autism #Dementia #Concussion #Addiction #AddictionRecovery #Cancers #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #Suicide #ChronicFatigueSyndrome #DistractMe #HIVAIDS #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorder #Headache #Stroke #Cancer #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #CocaineDependence #drugaddiction #Alcoholism #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Selflove #Selfcare #MentalHealthHero #TheMighty #RareDisease #MightyTogether #RareDisease

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3 migraines

I have had migraines since I was 12 yrs old. For yrs it went away but recently due to lyme disease and mold toxicity they have returned. Yesterday was one of the worst days I have ever had. I had 3 within 24 hrs. No matter what I took or did the pain was still there. Even this am I still had a headache. I have never had this before. Anyone else?

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On Wednesdays I Go Diving 💁‍♀️

Arrived early for my hyperbaric oxygen therapy today and snapped a quick selfie. I thought it would be a good opportunity to post about what it’s like, for anyone who is interested in giving it a go.

The first thing worth noting, is that Chronic Fatigue is categorised as a neurological disorder by The World Health Organisation. I don’t know if this applies to all countries, but under U.K. legislation and prescribed NICE guidelines doctors have to follow, healthcare providers are required by law to recognise it as such. In the U.K., there are around 50 Multiple Sclerosis Therapy Centres and because CFSME is classified as a neurological disorder, they are usually happy to treat people who have a confirmed diagnosis.

Hyperbaric Oxygen Therapy (HBOT) involves breathing pure oxygen under pressure in a purpose built chamber, usually for an hour. Most people do a weekly session, but for some conditions like cancer where HBOT is proven to make chemotherapy more effective, 3-5 sessions per week may be recommended. This pure supply of oxygen is delivered *above* normal atmospheric pressure, so that the oxygen is delivered is in excess of what you would normally breathe in everyday.

Under normal circumstances oxygen is transported around the body by red blood cells. But with HBOT, the pressure increases the oxygen carrying capacity of the blood stream which induces oxygen levels to increase in ALL of the body's fluids, including blood plasma and lymph fluid.

The benefit of this increased level of oxygen is that the oxygen can more effectively reach damaged tissue and areas where circulation is poor or sluggish, as is the case for anyone suffering from long term chronic illness who is not able to take regular exercise. Another benefit is that it enhances the ability of white blood cells to kill infections, and oxygen is both antibiotic and antiviral. HBOT also helps to reduce swelling and inflammation. Delivery of extra oxygen encourages the rapid growth of new blood vessels into the affected areas which are then available to stimulate healing and repair.

This makes oxygen like little cheerleaders for your body 😍

Recent studies suggest that increased oxygen levels can help release stem cells from bone marrow. These stem cells have the potential to transform into any cell of the body and so there is the possibility that damaged tissues can be renewed, and I assume this is probably one of its many benefits for Mutiple Sclerosis sufferers. Depending upon the pressure level or “diving depth” as it’s commonly referred to—the body is provided with between a 10-20 fold increase in normal oxygen delivery, making it a painless and non invasive treatment.

In terms of what to expect, you will likely need to have your doctor or GP, endorse your condition and give their blessing for you to do HBOT. You may asked to visit the centre in advance of doing any sessions so they can show you how it all works, but my husband was able to do this on my behalf.

The “depths” of pressure can vary between 16ft, 24ft, and 33ft. You start off at the lowest and the instructor will let you know when you can increase to a higher pressure—often after about five dives. The chamber itself has space for around 6 chairs. At my centre they are like padded office chairs, so you need to be able to sit upright for roughly an hour and a half, but they do also accommodate wheelchairs.

You get given a mask and you attach the nozzles on each side which you can just see in my picture. One is for O2 in, and the other for breathing CO2 out. You have to create a seal on your face so there are adjustable straps to help you achieve this. I have learned that taking the mask off, often upsets the seal so it’s best try keep you mask on. The mask may leave your face with some pressure marks but these fade within 10-20 minutes after your session.

At the start, the chamber gets pressurised for about 15 minutes. Your ears feel like you’re on an airplane and you may need to yawn a few times to clear them. In my first 10 sessions or so, I would get really hot in the first half hour. Some people bring a small towel with them, if they are excessive sweaters but I have since stopped experiencing this side effect.

Putting the chamber under pressure is a loud affair and feels very similar to taking off in an airplane. The noise stops after the desired pressure has been reached, and then your hour begins...

I like to take a book to read, but in the beginning I just focussed on my breathing. If you are familiar with yoga and meditation breathing exercises, these breathing techniques can help you to maximise the benefits of breathing in concentrated oxygen. My local centre has a camera and a PA system fitted in each chamber, so the instructor can monitor and communicate with you. So if at any point you are in distress or need medical attention, you can wave and or shout to get their attention and they will depressurise the chamber for you.

After the hour is up, it takes another 15 minutes to release the pressure. Sometimes it can get quite cold in the cabin and occasionally a bit fog like—and then you’re done!

In terms of the benefits, it has really helped my energy levels. In my first few dives, I wasn’t capable of putting on makeup or fixing my hair which I am able to do again so that at least once a week I get to do some mild socialising. There is however the potential to induce a herxheimer / healing crisis. I found this out when I tried to go to 33ft—the detox and die off effect became too much, so I have dropped back down to 24ft for the time being.

For those who know about my hyperthyroidism hair loss experience; the combination of DMSO and oxygen has helped to stop any further hair loss, and is slowly helping to regrow my once thick locks (my eyebrows and eyelashes are thankfully back to normal from the DMSO!) It is also really helping me to tackle my airway infection from yeast and mould/mold mycotoxins, so that I no longer have the constant stuffy feeling in my nose that I’ve had for the past 20 years.

The wonders of DMSO are too numerous to detail here—deserving of its own post. But I hope that this post helps anyone who has been thinking of trying Oxygen Therapy, a better idea of what to expect and perhaps give you the courage to give it a go.

I wish I had done it sooner rather later, and I’m very happy to answer any questions anyone may have 🤗

#ChronicFatigue #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #Fibromyalgia #MyCondition #HypothyroidismUnderactiveThyroidDisease #Hyperthyroidism #MultipleSclerosis #Cancer #LymeDisease

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