Join the Conversation on
184 people
0 stories
14 posts
Explore Our Newsletters
What's New in

I'm new here!

Hi! I'm here because I want to learn more about recent diagnosis for chronic Lyme & dysautonomia (still figuring out what) & treatment options. I do have other co/chronic illness as well.

#MightyTogether #Migraine #Dysautonomia #CeliacDisease #LymeDisease #chroniclyme #sibo #EBV

1 reaction 4 comments

Chronic Illness

I’ve been sitting here thinking of all the symptoms of my chronic illnesses and how they’re so similar. It seems like everything is revved up going at the same time. How do we do it? It is ruining my day. Usually everyday. I’m doing my pain mgt which is clearly not working. I’m losing my joy. #spinal stenosis #CFS #EBV #Bipolar

2 reactions 3 comments
See full photo

Did food save my life? The right food did. PART 3 #ME #LymeDisease #parasites #PeripheralNeuropathy #mold #EBV #nutrition #paleo

(continue from part 2)

It felt such a long way. I had traveled through the ME tunnel and I had come out on the other side. After luckily treating IBS and giving up Western medications I was semi functional and could have a semi life.

After switching to macrobiotics diet I was even closer to an actual normal health. That normal health (or a close approximation) came to be only after a bioresonance therapist informed me about mercury poisoning and amalgams. I had my 6 (7? I forgot) amalgams safely removed, and after some months I felt NORMAL, for the first time in 7 years.

I was still happily on a macrobiotic diet, with some adjustment to accommodate my constant meat cravings (macrobiotic diet is mostly vegan, but it does include some meat, even if it's on the Super Extra Yang side of the spectrum).

My strength was more or less as I remembered it before getting ill (I was never very strong because of all the tranquillisers), the bouts of weakness that were still occasionally returning after my miraculous although partial improvement in 2009 had all but disappeared, Fibro pain was back briefly only after a lot of exercise, once every couple of months. I could do almost every activity I wanted. I felt healed.

In hindsight that was quite an achievement - only in 2015 I discovered a paper from 2005 that a doctor had misrepresented, demonstrating clearly that I had reactivated Epstein Barr all along. And some months before the onset of what had been diagnosed as ME, I had an insect bite (tick?) showing the fateful bullseye rash, which at the time for lack of better judgement I ignored. All this I learned only many years later.

So I had managed to send reactivated Epstein Barr and lyme into remission with just diet.

And juicing. And $80 per week of acupuncture and bio resonance and chiropractor. And 2 years of Chinese herbs. And frigging meditation, 30 to 60 minutes per day. And yoga, And running. And healing all my relationships/ dumping all bad relationships. And changing my sleep patterns. And oil pulling and skin brushing. And 1 month of physio rehab in spa waters every year. OK, maybe it wasn't JUST the diet. Still, as I didn't even know what the real problem was, it was still pretty impressive.

What I didn't know was that destiny had more s*, pardon me, challenges in store for me. In the form of some delicious sushi. That must had been off and gave me a really bad food poisoning. I didn't think much of that, but after some months the most terrible depression started. I had various reasons to be depressed, my life wasn't going at all i as I wanted it to be, in spite of those two years of good health, but still, I had gone through so many challenges in my life and NEVER felt such bottomless despair.

July that year was a wonderful summer, and I started crying then, all day, and never stopped. I knew better than running to some psychiatrist to get poisonous medication that would have defeated all my detoxification efforts, also because an impressive number of accidents piled up in the span of few months - a scooter accident that gave me two herniated disks, my career being basically destroyed by some nasty coworkers for no reason, pneumonia, two most important relationships disappearing, I mean, I had good reasons to cry.

But still, it felt odd, nothing like my usual self. In the same period I developed some intense allergies that I never had before in my life. Allergy to dust. To grass. To some foods.

Destiny kept turning its wheel, and I moved to another country, in a house with a very weird smell. I had immediate violent reactions, which I thought were due to dust. I cleaned and cleaned, but the reactions got worse. For some strange reason taking a shower was excruciating, the exploding pain in arms and legs would require hours of rest in bed to recede. I tried my usual remedies, juicing, superfoods, strict rice diet, nothing, it only got worse and worse.

After 6 months I was diagnosed with a shiny new condition, Peripheral Neuropathy, of idiopathic nature ("idiopathic" apparently means : appearing for no reason, in my book it means "diagnosed by an idiot"). Between the pain and the respiratory allergies and the brain fog and the depression that hasn't improved in all that, I was beyond miserable. After a while I changed home again, and I had some respite.

Finally I had gotten a diagnosis of Lyme and reactivated Epstein Barr and a couple of other beasties to substitute the useless diagnosis of ME and fibromyalgia (I mean, what use is a diagnosis if the only thing they can do for you is tell you to suck it up?!) and finally I had something to work on.

I started a protocol for Lyme, and in the new city where I had moved I discovered a lovely shop selling fermented food. I never had kombucha before. Or fermented vegetables. Or water kefir. It was a fascinating universe, full of mystery and possibilities. Live bacteria everywhere. Good bacteria winning over the bad bacteria. There was justice in nature. I was excited.

(trigger warning - we are now at the disgusting part of the story)

On day 3 of eating fermented food and drinking kombucha, I passed a spoonful of small worms just like my cat used to have (pinworms. they are called). I blinked like 15 times before my brain accepted the reality of what lied at the bottom of the toilet.

On day 6, I felt something weird, and looked back in the toilet : a 25 cm (almost 10 inches) long string of something that definitely looked like a worm was staring at me (ok it had no eyes so it couldn't stare, but you catch my drift). I could swear I lost consciousness for some seconds. Upon further examination, it was easy to recognise it as a tapeworm (the typical segments and appearance).

Food had done it again: it made all these parasites come out of hiding. I kept going with food. According to some sources, papaya seeds are given to children in some African countries to get rid of parasites. I took them. I doubled down on the fermented stuff. But then the parasite gave such huge jumps that I realised the problem was much bigger (or actually,

longer) than I expected.

There was no specialist to help me. Two gastroenterologists I visited vehemently refused to look a the specimen that i had preserved in a ziplock bag. The holistic doctor I was seeing literally close his eyes and kept them closed until I put away the photos. At the ER a terrified young doctor agreed that it definitely looked like a tapeworm, and, looking very shaken, after a short google search prescribed me one dose of a medicine that was usually prescribed for 7-14 days. Not enough. Stool tests came back negative, but I tended to believe my eyes, and the ziplock bag, more than tests.

Once again, I had to make do without medical care.

The Great Parasite War needs its own post, but to cut it short, after various (also pharmaceutical) antiparasitic medications and remedies, I kept the beasts in check thanks to a combination of fermented garlic, pumpkin seeds to paralyse them and Diatomaceous Earth to kill them.

(One small note; after I passed the whole beast, more than 6 feet without counting the first bit, and I was finally free, the bump I had at the level of my duodenum disappeared, my gallbladder issues disappeared, and the depression vanished overnight. My mental health was back to its original state (which doesn't say much, ok) but I didn't feel that despair anymore. I wish more people knew how parasites can affect a lot of functions in the body. End of note)

Again I was eating to get healthy. At some point while living in the smelly house, I developed an intolerance to my beloved brown rice. Or all rice. Little did I know that it wasn't much the rice, but the mycotoxins often found in the rice. Or miso. I was so sad to react to miso. I didn't know that Miso is made with one sub-species of Aspergillus. And that a far cousin of his was actually living in my bowels.



Four White Walls and Spoonie Things

I’ve been bedridden for 1 year 8 months and 9 days.
I’m on an indefinite pause while the world whirls past me.
It sucks not being a part of any of it. Being separated from everyone in the stale, dark, and yellowing rectangle room that I’ve memorized. While my friends, who have all moved on with their lives, eat, drink, and get married. (Pun intended).
I love them all so much. And still; I deleted all my social media accounts so I wouldn’t have to scroll through and be reminded of what I can’t have. At least for a time. It’s just too painful right now. (Plus I just downright do not have the energy whatsoever.) I wish I could confide in them about this but even they have told me that they don’t fully get it. (You know, my health stuff since I’ve gotten so sick). While watching a chronic illness tv show, it had a very apt quote which was about having a group of ppl who are sick go through the same thing, and other ppl, no matter how much they care will not fully get it unless it’s the same thing. So that’s why im here now. So Hi! Nice to meet you👋🏼 I’m Kay, a Spoonie like you. Sometimes I sleep 18-20 hrs a day because I’m up literally alll night long from severe pain, and simply because my body literally is dealing with 14+ diseases. And the elderly care home I’m at (despite the fact that I’m 25 yrs old) is not able to give me the care I really need to battle it. But im doing PT and trying to learn to walk again so I can be among the living again. I’m not sure what, how etc that will mean since this is my only place to live and I have no family to live with in the state, so it’s in Gods hands from here. Before I was bedridden I was a lab assistant and worked myself almost to the grave. I kept telling myself I wasn’t sick because I didn’t want to be. At the time I didn’t have any confirmed diagnosis’s other than Lyme and multiple forms of co infections so I felt like that wasn’t enough to stop working long and hard hours. I’ve always had 1-3 jobs and ALWAYS felt super terrible physically, I just told myself I was fine and pushed it down. I didn’t want to be sick, I wanted to live life.
Lol. Look how that turned out for me. 😂😆 YET, at the same time, I’ve learned a ton and although right now is an extra hard season, each season Jesus has taught me something, and always kept His promises to me. ♥️🤗
In closing, here’s the thing.
I don’t want to be on pause anymore. I’m doing my best to hit the reset button, but just as all you spoonies know, holy crap, does chronic illness kick butt. But keep going just like I am. (Not that I’m anything special). Don’t give up fellow spoonies. If I haven’t thrown in the spoons yet, after drs trying to literally kill me by illegal treatment, shaming me for losing my voice and saying I am faking it, refusing to read my text when it’s my only form of communication, and so SOOOOO much more that could fill a full series, and if other ppl, ppl I’ve read about and have endured much hardship can handle a lot, then so can you.
WE can. Together.
(You probably saw this the other day but I accidentally deleted it..technical difficulties😅.So here it is, again.😆💫✨)
#EhlersDanlos #EhlersDanlosSyndrome
#MastCellActivationDisorder #Viceralhyperalgeia #HypothyroidismUnderactiveThyroidDisease
#Fibromyalgia #raynaudssyndrome #TheBendyBunch
#hypermobileehlers-DanlosSyndrome(hEDS) #PainfulBladderSyndrome #ChronicPain

9 reactions 17 comments
See full photo

Here's Hope! Moderna started trials for EBV/MS vaccine

Things are moving fast. In the past month, a couple of studies show undeniably strong ties between having Epstein-Barr Virus (mononucleosis or "mono") and developing multiple sclerosis. (One researcher said that the ties are even stronger than those between smoking and cancer.) In a military study of 801 subjects diagnosed with MS, all but one had EBV first. If a vaccine could be found for EBV, would it prevent the mysterious disease of MS?

This morning, Moderna announced that even as those studies were going public it had started clinical trials. The mRNA technology that developed the Covid vaccines in record speed are being used. One of the study researchers in the next article even brings up "the possibility of a cure for MS by 'targeting EBV.'"


#Vaccine #EBV #Moderna #MultipleSclerosis #Wheelchair #Depression #newlydiagnosed #MightyTogether #ChronicIllness #Disabilities #Caregiving #Disability #Support


New #EpsteinbarrVirus diagnosis. Help!

So I've just gotten my #EBV results and the Dr didn't call to explain. I've scoured the internet but hoping my fellow spoonies can give me some insight with your experiences. I don't seem to fit the symptoms for #ChronicEpsteinBarrVirus so not really sure how this plays into my #Fibro issues.

EBV Viral Capsid AG IGM <36 (neg)="" ebv="" viral="" capsid="" ag="" igg="">750 (pos)
EBV Nuclear AG EBNA IGG >600 (pos)

I also have #Fibromyalgia . Tested neg for Lyme. Neg for ANA 7 years ago. Positive for HLA B27.

Secondary, I feel like my 7 year old just isn't right. He has low IGA and IGB #s so he gets sick a lot. He struggles with some fatigue and still needs a 2 hour nap every day on top of a full night's sleep. All bloodwork normal. Should I test him for EBV?

Thanks in advance!

See full photo

Sharing with people the truth about how unwell I am.

Shared on facey.

I barely remember who I used to be. For a long time I pretended to be the old me. Was it to fool others? No! I realise now, it was, without realising to fool myself. I did not want to feel this way.

Over the past 5 years you would see me on my better days, but those days I was still unwell but excited I could manage to see you.

I do not publicize my illness over social media because I do not want sympathy.

But what I do need is to be honest.
I have a chronic illness that has progressively got worse over the years.

Do I know exactly what it is, the answer is "kind of"... why "kind of"... because the medical system has failed me.

Each day is filled with my whole body feeling like I have a virus, aching, pain, facial drooping, exhausted, barely being able to walk or do small tasks.
No longer do I have a good healthy day, each day is a struggle.

How do I get through it?
Beautiful support from Johnny, never judging and always respectful and helpful. By finding positives in each day and resting.

I live for my children, regretful I don't have much to give.

Thank you for reading, please don't start calling. I'm not good on the phone.

Just wanted to be truthful to my people on facey.

Was a photo from 5 years ago that spurred this.
Was my girl nights I used to organise.
Ohhh I loved them, a bunch of amazing people who mostly didn't know each other but would respectfully enjoy their night together and make new friends.
This night I went home because of my illness.
The early stages of my chronic illness. Never new that 5 years later that I would be this unwell and what I enjoy most now is having a day I am able to manage my symptoms.

Thanks for reading. ##ChronicFatigue #ChronicIllness #Fibromyalgia #EBV