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readbetweenthelyme · 2 years

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Hard to believe

After a decade of chronic illness, I’m still surprised sometimes. Not just 6 months ago, I was almost bed bound. I could maybe manage 3-4 hours upright daily with very minimal activity. I had to take a medical leave from work. Last week we spent in Colorado with my in-laws. We were outside doing something every day. Hiking, swimming, white water rafting. Granted, every day I had to lay down for…

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#chronicillness #chroniclymedisease #disease #readbetweenthelyme #spoonies #chronic #chronic conditions #chronic fatigue #chronic illness #chronic symptoms #Colorado #coping #health #life

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recentupdates · 5 months

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Lyme disease Has a Diverse set of symptom? - Lifestyle Physicians

Test for Lyme Disease: To contract the disease, the infected tick needs to attach to you for 36 to 48 hours – that’s about two straight days. If you find a tick on you, pull it firmly and upward off your skin with a clean pair of tweezers. Always check exposed skin after a hike or working outdoors for ticks that may have taken hold.

Source URL:https://lifestylephysicians.com/7-things-you-need-to-know-about-lyme-disease/

#lyme #lymedisease #lymewarrior #lymediseaseawareness #lymeawareness #lymelife #lymefighter #lymedontkillmyvibe #chroniclymedisease #lymesucks #lymetreatment #lymecommunity #autoimmunedisease #lymie #lymestrong #lymewarriors #health #lymesurvivor

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jmurphree · 1 year

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The new movie, “I’M NOT CRAZY, I’M SICK”, sheds light on the controversial issues surrounding Lyme disease and its treatment. This film provides an in-depth look into the medical community’s negligence when it comes to diagnosing and treating this serious illness. It also raises awareness about the lack of research and funding for finding a cure for Lyme disease.

#Lyme ChronicLymeDisease Medical Health Movie

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colitisandme · 2 years

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Well it was obviously getting a bit boring in my body so my body decided to turn up the danger and excitement just a little bit so… move over, Phyllis, (Fibro) Colin, (colitis) Phil and Burt (lung nodules) and (not so jubilant welcome to Larry Chronic Lyme disease and his 3 cuddly co infections! 🤦‍♀️🤦‍♀️🤦‍♀️🍋🍋🍋 I am guessing Larry and his cuddly pals love interior design because he seems to have rudely decorated my cells with his own unique art designs… and continues to rip down existing wallpapers to add his own features and painting style. I tell you now, I don’t like him, his arrogance, his haphazard art designs or the way he has made himself at home in all my cells, blood, plasma, brain, white blood cells … he’s also set fire to my immune systems pants, making it run about, whist on fire, in a blind panic bashing anything (god or bad) that it comes up against and subsequently setting it aflame… but I guess he and his friends have been living the life of Riley for 9+ sodding years…. Well Larry and pals you have very much outstayed your welcome don’t get too comfy … you are in for one hell of a fight! 🤦‍♀️🤦‍♀️🤦‍♀️ 💪💪💪💪#chronicillnesswarrior #chroniclymedisease

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thevoidandiarefriends · 5 years

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Am I trying to make up for the past few weeks of not posting? Maaaybe. Am I also just really excited about designing posts for my new theme? Oh definitely. Send this to someone who makes you believe in wishes come true 💛 ☄🐘🌫🌑🌙 #poetsofig #poetrycommunity #writingcommunity #bookstagram #poetsofinstagram #writersofinstagram #poetryisnotdead #sjblasko #readersofinstagram #elephant #selfpublishing #mentalhealthawareness #chroniclyme #chroniclymedisease #depression #hometown #growingup #indiepoetry #indieauthor #friends #friendship #nostalgia #amediting #poetrybook #poetrycollection #fairylights #graphicdesign #artofpoets #creativephotography https://www.instagram.com/p/B3K0mV6Fooj/?igshid=15tlioecroaxt

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modellmc · 5 years

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#Regram of a pic from @lamiabellamente - words from me: Oh so you mean in #LYME , Connecticut that this happened? Finally, #LymeDisease is being heard and fought for by #House representatives (specifically, #NewJersey #houseofrepresentatives speaker, #ChrisSmith). This is #GROUNDBREAKING. We #lymies THANK you!!!💚💚💚 #lymediseaseawareness #lymeawareness #lymie #hope #nytimesthisislyme #chroniclymeisreal #chroniclymedisease #chroniclyme #modellmc #butyoudontlooksick #thepentagon #ushouse #lymewarrior #lymewarriors #lymedontkillmyvibe (at The Pentagon) https://www.instagram.com/p/B0CYTlzHzII/?igshid=t2nnnkgn39y5

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jenicorn88 · 5 years

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This is so true. Always some level of pain happening. #cfsme #spoonie #invisibleillness #Repost @thechronicpainstory with @get_repost ・・・ always in constant pain..some days might be more manageable than others, but yes, always in constant pain. #stillinpain #imfine #thestoryofmylife #thechronicpainstory #thestruggleisreal #chronicillness #chronicpain #invisibleillness #fightingformylife #chroniclymedisease #lymedisease https://www.instagram.com/p/BqkJ2xGH2LR/?utm_source=ig_tumblr_share&igshid=zupgh93lxvel

#cfsme #spoonie #invisibleillness #repost #stillinpain #imfine #thestoryofmylife #thechronicpainstory #thestruggleisreal #chronicillness #chronicpain #fightingformylife #chroniclymedisease #lymedisease

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mylymedlife · 6 years

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This Story Will Make You Mad.

When you have chronic lyme disease, it can be very hard to know who or what to trust. This story is a perfect example.

When I was diagnosed with chronic lyme disease in 2013, I was also diagnosed with hypothyroidism, as I had low T3, which is a hormone produced by the thyroid gland. I had an unusual situation, as I had low T3, but normal TSH (Thyroid Stimulating Hormone). Normally, if you have low T3, you also have high TSH. But I didn’t.

Apparently, this was cause for concern, as one situation that produces low T3 and normal TSH is a brain tumor. So, my lyme doctor ordered an MRI of my brain. You can bet I was super relaxed about that. Thankfully, I did not have a brain tumor. Thus, my doctor said the lyme infection in my brain (it breaks through the blood brain barrier in the first 48 hours) was interrupting the communication between my hypothalamus and my pituitary gland. The two need to be on good speaking terms in order for the thyroid to function properly.

My lyme doctor recommended thyroid hormones. This turned into a major discussion, because a functional medicine doctor I was seeing at the time implored me not to take the thyroid hormone. He basically said it would goof everything up and that there were more natural ways of dealing with my thyroid issues.

At the time I was dealing with severe fatigue. As in, we were on a previously planned trip to Disney and I had to use a mobility scooter because there was no way I could have walked the park. That kind of fatigue. Can you imagine?

I didn’t know who to believe about the thyroid medication, but I knew something needed to change in the way I felt, so against my better judgement, I decided to take the thyroid hormone.

I have seen two different lyme doctors since the one who originally prescribed the thyroid hormone, and they both recommended I stay on it. Over the years, my T3 levels were closely monitored, with blood draws very six to eight weeks, followed by medication adjustments, if necessary.

Fast forward to fall of 2017. Suddenly, I’m having all sorts of issues with regulating my body temperature. I have a history of always being cold, but suddenly I was always hot. Like, really hot. I spent the harsh Minnesota winter in a sweat. Sometimes I’d walk around the house half naked. I’d be in a public space, and I’d note I was wearing a t-shirt while everybody else was bundled up in sweaters and jackets.

I know what you are thinking. Menopause. While I am of a certain age, I’m still menstruating, so that wasn’t the issue.

When you are being treated for chronic lyme disease, you tend to move away from traditional western medicine practitioners, because they look at you like you are crazy when you say you have lyme disease. It gets old.

But the body temperature thing was really bugging me, and I had a hunch it had something to do with my thyroid. So, I made an appointment with an endocrinologist.

After starting the meeting with the standard “I know you don’t recognize this, but I have chronic lyme disease” conversation, I told the doctor about my past thyroid issues, along with my current symptoms and medications.

He asked to see my blood work from before I started the thyroid hormones, which I had on hand. Sadly, I’m a pro at this, and anticipated his request. He then asked the million dollar question. He said “How much did you weigh when this blood work was done?” I told him I didn’t know for sure, as it was many years ago, but I guessed it was south of a hundred pounds.

To which he said “I don’t think you were hypothyroid. I think you were starving. When your weight gets too low, things don’t work right.”

When he said that, tears literally popped out of my eyes and rolled down my face. I didn’t even care. I was completely unselfconscious about it. Why was I crying? First, I never wanted to take those damn thyroid hormones in the first place, and it turned out I never needed to. So, that pissed me off. Second, it just reinforced how difficult it is to navigate the lyme jungle. I had not one, but three lyme doctors tell me I had lyme related hypothyroidism, and that it was critical for me to take the medication. In that moment, I was just so exhausted on navigating conflicting medical opinions.

The lyme doctors didn’t make any money off the medication, so I can only believe they had the best of intentions, but still. It’s just infuriating. There are many risks associated with taking thyroid hormones, and it turns out I unnecessarily exposed myself to those risks for four years. Not to mention, taking thyroid hormones is a huge pain in the butt. You have to take them first thing in the morning, one hour before any food, drink or other medication. Psychologically, it never made me feel good to roll out of bed and pop a pill first thing. It just sends the wrong message. I’m sick. I need medication to function. I hated starting my day that way, and I’m getting mad all over again as I write this.

But back to my appointment with the endocrinologist. Once he handed me a tissue and I stopped crying, he suggested I discontinue the thyroid hormones, and then come in for a blood draw in three weeks, once the medication fully cleared my system.

You can already see where this is going. My thyroid labs were completely normal. I was taking medication for no reason. In fairness, I have gained 26 pounds in the last two years, so that likely has something to do with my T3 levels coming back into the normal range.

Two things have happened since I discontinued the thyroid hormone:

Over the course of a few months, my body temperature issues resolved, and I am no longer overheating.

I started to gain weight at an increased clip.

When I noticed my increased weight gain seemed to coincide with discontinuing the hormone medication, I emailed the endocrinologist to ask if there was a correlation. He said there absolutely was. So, all these years, when I have been struggling to gain weight, the thyroid hormones were playing a role in holding me back. My GI system is still totally whacked, so I can’t put all the blame on the thyroid medication, but let’s just say it wasn’t helping anything.

I’m still pretty mad about all this. Yes, it’s true, I did have low T3 at one point. But I’ve learned it’s also true that not all thyroid deficiencies need to be treated, particularly if there is an extenuating circumstance, such as dramatic weight loss.

Here is the moral of the story. You know that expression “to a man with a hammer, everything looks like a nail.” I think that’s also true of many lyme doctors -- everything looks like lyme to them. And that’s my advice today -- if you have chronic lyme, or chronic anything, be on the lookout. It’s too easy for doctors to just blame everything on your chronic condition.

For whatever reason, I always had a nagging feeling my thyroid issue was not lyme related, but I never acted on my hunch because I had three people who had gone to medical school telling me I needed to be on medication, and I figured they were in a better position to know that than I was. Well, that turned out to be misplaced trust.

I am sad to say that after nearly five years navigating the mess of chronic lyme disease, I truly don’t know who to believe or who to trust. I think the fact of the matter is nobody has chronic lyme completely figured out. Not western medicine doctors, not functional medicine doctors, not lyme literate MDs. Nobody. Everybody has their own theories, and I believe they believe them. And I think most practitioners who treat lyme patients have nothing but good intentions. But I can’t help feeling like a human guinea pig.

We are still on the frontier of this epidemic, and until it gets more attention from the CDC and Western Medicine, there’s not going to be a standard treatment protocol, which means people are going to continue to struggle to get proper care, and will occasionally get sent down errant rat holes, as I did.

I realize this is more negative than I tend to be, but lyme disease is a bitch, and people who suffer from it have to work way too hard to get well, as they are simultaneously fighting the disease and the system.

I know things could be much worse, and I need to hang on to that perspective. I have learned so much from being sick, and I would never give those lessons back. But lyme disease has taken much from me, and I have sadness and anger about that. Buy I will never stop trying to regain what I’ve lost. Never. Ever.

#chroniclyme #chroniclymedisease #chronic lyme disease #lyme #lymedisease #thyroid #hypothyrodism

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lovesilentfury · 6 years

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Regrann from @thechronicpainstory - some times you just have to laugh at my short term memory loss!🤪 #thestoryofmylife #thechronicpainstory #thestruggleisreal #chronicillness #invisibleillness #fightingformylife #chroniclymedisease GoddessStrong (at Park Hill, Denver)

#thestoryofmylife #thechronicpainstory #thestruggleisreal #chronicillness #invisibleillness #fightingformylife #chroniclymedisease

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agirlwithlyme · 6 years

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Late afternoon kitten snuggles😻 •• Go follow my cats Instagram account— I’m going to be posting again soon! @its_a_cats_life_for_me •• #Cat #Kitten #Furbaby #Selfie #Adorable #CatsOfInstagram #LymeDisease #ChronicLymeDisease #ChronicPain #Spoonie (at Nova Scotia)

#cat #kitten #selfie #adorable #spoonie #furbaby #chronicpain #lymedisease #chroniclymedisease #catsofinstagram

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readbetweenthelyme · 4 months

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2024, Here We Come!

Our winter break has been busy. We weren’t out of school until December 21st. I don’t mind how late in the month it was (usually, it’s earlier), but I also do not have small children or grandchildren…yet. I think that makes it easier for me than for others trying to get ready for Christmas day. So, Friday December 22nd was a clean the house and rest day. Saturday we spent the afternoon with my…

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#chronicillness #chroniclymedisease #disease #spoonies #acceptance #blessing #Christmas #coping #Pico #puppies #winter

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randomlytaylord · 4 years

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This is the chaos that is my #craftcave and I think there are 2 blankets, (maybe 3) scattered around the area. This is how I normally work, 2-5 projects ongoing at once. Project work time varies, because of the #chroniclymedisease which makes it hard on my body to do a lot of repetitive tasks (#mmj helps me to keep doing what I love) I somehow keep things separated, and in the midst of the blanket mess, pjs in 4T (3 piece set) and an adult 2x tank also emerged. I’ll post photos of them later on. #smallsewingspace #randomlytaylord #wip #quilting https://www.instagram.com/p/CBLeguNp3de/?igshid=1g7420321yiyx

#craftcave #chroniclymedisease #mmj #smallsewingspace #randomlytaylord #wip #quilting

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sublyme77-blog · 6 years

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Think happy thoughts especially to get you through the tough times. Hugs 🤗

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modellmc · 4 years

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My modest contribution to #nationalwomensday that I'm seriously #gotrievering all over... I made a new word, lol! I've always called it "Golden Retrievering" and used it in the context of #cfs #chronicillness #chroniclymedisease #chronicillnesses #invisibleillnesses #invisibleillness #lymedisease and being #disabled when I was talking about how isolating #disability is. Whenever I have a good day somewhat free from #fibromyalgia #chronicpain #chronicfatigue I talk to strangers to the point that they get freaked out by me wanting SO BADLY to have some #humaninteraction that they shoo me away like they would with an overeager Golden Retriever. (Full definition in photo) 🤣 I submitted it once to #urbandictionary and they suggested that I appeal to a larger audience so I made it one word and whaddya know, it's now real!!! Haha this is so funny to me because I'm using my own word to react to @urbandictionary publishing it. LOL I DID A THING!🍒🔛🔝 GOTRIEVERING! Spread it like wildfire, my friends!👍😅 Sincerely Weird, Laura 🤷🏼‍♀️ #modellmc https://www.instagram.com/p/B9gPg53htiq/?igshid=1tlsqkmz6cg6v

#nationalwomensday #gotrievering #cfs #chronicillness #chroniclymedisease #chronicillnesses #invisibleillnesses #invisibleillness #lymedisease #disabled #disability #fibromyalgia #chronicpain #chronicfatigue #humaninteraction #urbandictionary #modellmc

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wholehealthclinic · 5 years

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~ ~~~ Lyme disease is transmitted to humans through a tick bite, which causes a bacterial infection. There can be a characteristic rash known as a bull's eye rash with associated virus-like symptoms. In order for Borrelia burgdorferi, (Lyme disease) to occur the tick must feed for around 36 hours. It can be extremely difficult to diagnose Lyme disease. However early symptoms can include flu like symptoms such as: • Fatigue, • Fever, • Chills, • Headache, • Rash, • Muscle pain and swollen lymph nodes, as they are common symptoms of a flu-virus. ~~~ On the whole one treats Lyme disease with antibiotics. For prolonged symptoms alternative medicine can be very effective. ~~~ Here are some effective organic essential oils, that might help eliminate the bacterium: • Garlic oil, • Clove oil, • Cumin oil, • Myrrh oil, • Tyme oil ~~~ Taking certain vitamins and minerals, can help improve energy levels and cellular repair, a small example of these are: • Vitamin C, • B12, • Coenzyme 10 and Folate, • Spirulina (a type of blue green algae) Chlorella (again a type of algae helps rid toxins from the body). ~~~ Herbs are also extremely and highly effective in treating Lyme disease, some of which are: • Osha root, • Rhodiola rosea, • Artemisia frigida ~~~ There are various types of herbs to treat Lyme disease, including treatments of all kind, some are more effective than others, as symptoms can vary from person to person. It's important that you receive guidance through a professional practitioner. . . . . #lymedisease #chroniclymedisease #lymediseaseawareness #lymediseasetreatment #lymesdisease #tickbite #garlicoil #cloveoil #cloveessentialoil #cuminoil #myrrhoil #tymeoil #osharoot #rhodiolarosea #artemisiafrigida #vitaminc #vitaminb12 #spirulina #coenzymeq10 #folate #bluegreenalgae #algae #fatigue #rash #headache #fever #chills #musclepain #swollenlymphnodes #bacterialinfection (at London, United Kingdom) https://www.instagram.com/p/B0BmzzDp14z/?igshid=1egah9vrwmw7x

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mylymedlife · 6 years

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Things Are Looking Up.

Last week was a good one. For starters, my raging nerve pain (you can read about it here) responded to my second cortisone shot. The pain is not completely resolved, but it has gone from excruciating to annoying, and I can live with that.

The real big news involves stepping on the scale, which I did last week for the first time in months. I weigh myself only sporadically, so as not to obsess about gaining weight, and to avoid disappointment, as the weight is coming on ever so slowly.

But it’s been a while and I just had a feeling the news would be good. Well, it was beyond anything I could hope for. I weighed a whopping (for me) 105. I stepped off and on the scale four times just to be sure it was real. And then I weighed myself again two days later. Again to be sure.

Getting this far is incredibly significant for me. If you’ve been reading for a while, you know I weighed 81 pounds a year and a half ago (I’m 5′6″). I don’t have the words to describe the terror involved in weighing so little. I could count every rib. My arm bones were protruding. My abdominal area was concave. My hair was falling out. Now I wish I had a good photo from that time, but it was not a moment I wanted to capture.

I weighed 118 when I first got sick. And that reflected a recent weight gain due to strength training. So really, I was about 115 before I added muscle. I long ago gave up on ever seeing 118 again, as it was a stretch to get there even when I was healthy. But I told myself if I could just somehow, some way get back to 110 I’d feel pretty good about life.

Well, I’m within spitting distance of 110. There were so many days when I never thought I’d get this far. For eight years all I did was lose weight in spite of desperate, frantic attempts to do the opposite. It was torture. And terrifying.

But here I am. 105. I don’t have the words to tell you how hard I fought, clawed, and scraped for every single one of the 24 pounds I have gained. It has taken maniacal, ruthless determination and dedication. And I had to give up most solid food. Yes, I’ve been on a primarily liquid diet for the past year and a half. I eat real food once per day, and the rest is a special, pre-digested protein shake called Absorb Plus.

And that’s where we come to the mixed blessing of all this. While my weight gain is fantastic, it has happened because of a band aid (liquid diet) and not because anything in my GI tract is actually fixed. Many have tried but none has succeeded in unlocking the mystery of why my GI tract shut down. The Mayo Clinic diagnosed a severe motility disorder of unknown origin, lyme doctors say it’s because of lyme disease.

The Mayo Clinic had no answer except hope and a feeding tube. I said no thanks to that.

Lyme doctors tell me if I can get rid of the lyme my GI issues will improve. Maybe they are right, but maybe they are not.

I’m in a very vicious cycle. Part of the reason I haven’t been able to kick lyme is because the road out of lyme goes through my GI tract, which cannot tolerate the medications commonly used to treat chronic lyme disease.

If I think about all this too much I become overwhelmed and afraid and it all feels so hopeless. Will I be on a liquid diet forever? Will I ever really solve my GI problems, or will I always be covering them up with band aids?

I don’t have any of those answers. And when I get overwhelmed, I simply bring myself back to the present, and focus on what I can control. I remind myself I’m gaining weight. I remind myself I’m not dealing with stomach pain, nausea and feeling unpleasantly full 24/7. Those are all big, important things, and are not to be overlooked.

I’m meeting with a new GI guy in a couple of weeks. Maybe he will have some new ideas and answers. Or maybe he won’t. Who knows? The only thing I know for sure is that I will never stop trying.

I have 110 in my sights, and I will not take my foot off the gas until I get there.

The rest will sort itself out one way or another.

#chroniclyme #chroniclymedisease #lymedisease #lyme #chronic lyme disease

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