EBV Nightmare/still dealing with symptoms @6months!
Posted , 9 users are following.
Hello to everyone,
I got hit by this mack truck of a Virus AUGUST 14,18.
I was doing yoga one night- next day, whack! I'm hit hard, fever, burning, throbbing body- I thought I was dying or poisoned . From that point on the most scary horrifying syptoms came about. Never had low back pain, severe low back pain started three days later, leg pain, arm pain. Diahrea , headaches, all my muscles were like feeling encased in concrete could barely move-tight stomach muscle nausea-the full blown works of this virus are relentless. I barely could function running from DR to DR wondering what was happening. No diagnosis until 4 months in! EBV numbers high- I had a hunch it was something like that. Started on antivirals- seemed to help a little. Still dealing with muscle pain, back pain, muscle fatigue, weakness. My immunologist says I don't have antibodies to the streppocaucal bacteria, which cause sinus infections-could be adding to my length of time for healing. I let her give me a Strepoccaul vaccine. BIG MISTAKE! Caused a relapse, made me sicker made old symptoms surface that were long gone-started getting fever, night sweats, debilatating fatique.
I regret gettin this shot so much, what it made me realise is that I was improving, just hard to notice. I have taken steps back and am hoping to get back on track. What has been my main symptom is leg pain/low back pain,pain in arms-this seems to stick. Hard to function really have to pace myself daily. I'm depressed at times, cry daily at times-its been so hard this thing! I started a strict diet when it hit me- I juice,fresh produce- drink water, really trying to move forward but feel stuck!!! This forum has given me hope and relief- unlike all of these Doctors! I've been to every specialist known to man-before I got diagnosed-this has been so scary, traumatic and brutal-
I feel as if I'm in the middle of the ocean treading-going no where!?
When will I recover?
sorry for long story....
THANKS !
StarrA
0 likes, 67 replies
lori93950 starrA
Posted
so sorry you have relapsed i too just relapsed and realize now how much better i was doing . right now though i cant get off the bed and feel oh so ill.
i too have spent many days crying wondering when this nightmare will end .
from what ive read its very common to relapse and most people say each time its shorter and doesnt last long .
please God this is the case as im so fed up of this awful awful virus .
starrA lori93950
Posted
thank you LORI!
sorry to hear of your struggles-
i feel great comfort from all of you that actually feel what i feel as it is hard to fathom-
I hope you feel much better soon and I will include you in my prayers-......My heart goes out to you-
........yes, I have heard about relapses
just was concerned because I got that vaccine and it triggered an immune response and gave me not only new sysmptoms but resurfaced very old ones?
the shot scared me and my anxiety is very high over it- worrying all over again- will it mess with my immune ststem etc?
I'm losing my pateince and wanna give up
i'm doing well with food etc eating healthy but at 6months just wanna give up
strange how peoples symptoms vary?
my biggest complaint is low back pain, leg pain/arm pain- tired muscles/fatigue
i pray all day everyday
I LOVE GOD, but feel tested in my faith with this event-
been healthy all my life-39 years old- never have been this sick
the stories online are discouraging to say the least-
CfS, EpV /CHRONIC
MAKES ME FEEL MORE NERVOUS-
I FEEL AS THOUGH GOD IS ALL i have right now.....& this forum-:-)
starrA
lori93950 starrA
Posted
yes i have literally crawled to church begging GOD for some relief . i was doing so much better then bam! its just like when all this started. the stress of all this is making me drink more than i ever have ! not that im downing a bottle of wine a night but a glass or two t just relaxes me and gives me a break from thinking about this 24/7.
no i would NEVER get any kind of vaccine they are just poison but can fully understand why you did it ....id take anything right now if it would cure me .
my family arent close by but are at a loss on how to help me .
its an awful awful virus youre not alone suffering many others going through the same horrendous experience .
starrA lori93950
Posted
I too, beg God for a speedy recovery..... I feel your pain
I am about to drink myself, it is non stop 24/7 full time job these symptoms! I don't blame you at all....sanity is important/destressing.
The vaccine was a bad call, they cornered me and didn't give me a chance to think on it, I was insticntivly nervous and wish i could go back-all i can do now, is move forward. EpV and pnemmocacal bacteria go hand in hand-so the immunologist thought it would help in the long run. I have horrific sinus infections from not having the antibodies to this bacteria Dr said it was adding insult to injury and it might make me better- ugh
lies all lies
Doctors dont know that much
the body is so complex *
maybe it will help-but so far just made me worse! My immune response is still in gear, we'll see what these next weeks bring*??
I got the shot 5 weeks ago, and have been trying to re-recover ever since. It makes sense but bad call while sick with EPV
she knows i have this and did not care- stirring the pot while having epv bad idea.-
I wonder why no cure for EPV?
Dr's act like no big deal-it has ravaged my life for 6 mos
I quit my job, can't work-can't walk too much have to be on light duty all the time-
I had no idea there was something like this in this world
Dr's act like it doesn't kill you-yea it just kills your life-that's just as painful!
.....Lori, How long have you been dealing with this? Have you gone to immunologist to dive deeper into your immune system?
just dont get shot-:-)
the immunlogist did say to me that glitch in my immune system-which that shot was suppose to "fix"-
was the only thing wrong
the rest of my immune system is robust and she said it will eventually handle this virus-
but i stress over what that shot triggered-as far as my immune-system function/coordination
i was a worrier before this EPV
NOW COMPOUNDED!!!!!
time will heal.....so it seems
I wish the cdc would put funding into a cure/vaccine for EPV
they have a handle on HiV/the prep pill-the funding is there
as long as dr's treat this like nothing-the funding will never be there and we keep suffering-
sorry i write books!
lori93950 starrA
Posted
im at 11 months now and had it once before i now realize 12 years ago . it was slightly different though i had no fatigue just an awful mental weirdness anxiety that time .
this time i believe i got it from working out too much my body was amazing but i was obviously doing too much.
there is no talk of ebv on the tv ever and i know as ive watched so much these past 11 months.
bianca79779 lori93950
Posted
if only they spent as much research money on EBV as the do Erectile dysfunction...
lori93950 bianca79779
Posted
its insane ! i cant believe nobody talks about this ? when you mention it everybody seemed to have it at 18 for a 'few weeks' getting it at 52 is a different story .
yolanda hadid from real housewives has lyme and was in a robe for 14 months she said. lyme is similar to ebv ....apart from that no celebrities ever speak of it .
lori93950 starrA
Posted
yes and youre right ! the drs just say 'good luck' '
i can just about do a few errands sweep the floor and i live alone so things are getting neglected ....lightbulbs out .. fence needs fixing after storm . i mean wheres the life lesson when youre younger? This stuff should be made more public !
starrA lori93950
Posted
yea...so sorry to hear youve had it twice now~Lori-
i've read on runners forums that a lot of athletic people get this too! i think the virus likes a healthy host and working out is healthy but we run our body down and dont know cause we feel good from working out~?
ive heard that if you have it as a teenager its easier but as adult it sticks longer-
i never had it in highschool if i had i would have antibodies to it?
i do a ton of yoga etc before getting this and stressed out before it hit hard. I think i got it from work-i (was) working in dental office -living down in a sub-tropical climate-in the south/US -been in field 20 years never problem in moutain climate-now in humid climate i hear it spreads easier
i got this acute infection from work im sure of it-!
EBv does not get enough attention
its unfortunate
i had no idea there was something this awful out there?!?
starrA lori93950
Posted
agree!!!!!
bianca79779 starrA
Posted
Hi StarrA!
So sorry to hear about your relapse. I am very familiar with it as I am in my 14 month and I don't know how many relapses I've had. But I can tell you it gets easier and the relapses become less frequent and shorter in duration.
As far as the vaccine goes, I totally understand. When I first got it, I thought to myself, well if I'm gonna be sick I might as well switch up my thyroid treatment too. Adding that foreign substance to my system when it was on the extreme defensive caused a violent immune reaction with daily hives, welts and angioedema (my faced swelled so much I was in the hospital for 3 days). After I finally realized the new drug was the problem the response started to ease up. But then I started to have new allergies (mind you I didn't have 1 allergy prior to this virus). So now I can't take any NSAIDs (ibuprofin) or my face swells up. So yes introducing new things while acutely sick can lead to horrible effects. I still get hives daily but haven't had face swelling in 10 months.
I too was super active and very healthy prior to this virus. You have to give it time, try to relax and not rush your healing. Your body really needs you to be patient. Just resign yourself to the fact that it's gonna take 1 - 2 years to be back to normal. I know this is daunting and believe me, I thought at month 10 I was healed. I'm not, and have just finally submitted to letting my body have all the time it needs. For me this means facing my greatest fears of being out of shape and overweight. I know this is vain and trivial but it's the truth. I'm terrified of that happening and so I've never really stopped moving during this recovery. Always doing something even though I should have done nothing.
I too find comfort in this forum. And bouncing things off of others who have gone before me helps. I include many vitamins in my daily regimen along with alternative healing modalities such as acupuncture, Chinese herbs, and yoga. In my opinion Western medicine can do nothing for this virus. I also eat as well as possible and try to limit my alcohol to a glass or two a month. I'm done with being sick and I'm finally starting to put my actions where my mouth is.
Good luck and I hope you heal fast!
starrA bianca79779
Posted
thank u so much Bianca for your info!
i was doing light yoga before shot
trying to do still but muscles wont let me-i get so sore stiff achy tired ugh-
1-2 years- for healing.....!?
i get it- but i will heal??!?
my freinds husbandhad mono a full year-he thought he was dying- took him that longto heal-
this is just non-sense! 2019 we know that saturn has 18 moons -lets put funding into space-meanwhile we're suffering-Bs! -:-)
yes the vaccine has dredged up old symptoms ! and created brand new ones*
ugh, i feel as if i keep sliding backwards- i wonder how long a relaspe typically lasts?-
not to mention putting my 6year old golden down last saturday
the stress of that i think is making things bad-
thank u for the advise and words!
hopefully we all heal soon and can put this awful experience behind us!
good health/luck/blessings to you!
lori93950 starrA
Posted
we are all unique so timing is different for everybody . i think a year of illness then maybea year just rebuilding your life ....learning to do things again .
so sorry about your doggie that must be awful and yes any stress heightens the symptoms it feeds off adrenaline .
starrA lori93950
Posted
ok!-......
good to know *
thank you-for your insight-
my infectious disease dr says 6mos-1yr with this typically-
it feels so long,like things dont change much- some symptoms have come & gone (until my relaspe) but i have some symptoms that i have had since day three- like the virus chooses one area and sits there?
my dr also said it attacks the spine, so all of the nerve signals to your muscles get confused, causing weakness/soreness/pain in arms/legs at least for me*
yikes!
thank u -my pup will be missed, i hyperventalated when he got sick-i couldnt handle it
i typically can handle things but not with having this-
i feel like the virus is like the goop on the movie ghostbusters two
it feeds off negativity and angst and hates when you are happy?-:-)
i guess it keeps you low by design to proliferate - evil!!!!!
i swear this thing needs to go back to the depths of hell where it came from & never return!
lori93950 starrA
Posted
you cant be happy with this virus and when youre around 'normal' people who are lively laughing it seems weird .... like youre an alien .
dont know how ive got through these last 10 months ... i can count on 2 hands the amount of 'ok' days ive had ..... not that many .
theres no figuring this out if i knew the answer i would do it ! it just has to run its course and burn out .
starrA lori93950
Posted
yes i agree with you-
people have no clue why health is wealth! its all that matters even before this i always valued my health!
i have a new found compassion for all of the folks that are ill with anything!
GOD heal us and make us whole once again.....amen
thank u for your replies and engagement
means so much Lori!
10 months is long....i feel like you, only just passed 6mos-
not a lot of good days
only good minutes that pass by quickly....
i just wish i didnt have mechanical issues- ugh
limiting
& the pain
i like how you put it" burn out"
makes sense- just gotta tread water until we're rescued!
this is a very sneaky, tricky virus for sure.......
im grateful i found this forum, i was ready to jump off a cliff--:)
torture!
lori93950 starrA
Posted
yes for the first 5 months it wasnt that bad for me i was unduagnosed and all bloodwork came back good . so i continued to workout hard and thought it was all hormones . a lightbulb went off after reading something on the womens forum about ebv and cfs. got tested and was positive.
i had a few bad days but nothing like ive had since i stopped working out...maybe the sweating was releasing toxins .
but im doing what im told ...short walks only for now and to be honest dont have the confidence to really work out ..scared .
starrA lori93950
Posted
hi LORI,
interesting how this virus affects us all differently?
it hit me so hard there was no way i could even function let alone work out.
yea i can walk very short spurts like around the house
my body just wants rest
i too have to listen and take it very easy
its no fun!
this has shaken my confidence so much-
mentally too.....
i wish you healing
lori93950 starrA
Posted
yes we must listen to our bodies and rest as much as possible ..it does get old after a while however . i manage a short walk every day and it does help . some days im so dizzy but i power through .
craig07920 lori93950
Posted
Remember Lori some days you will feel more able to do short walks and things than others - and that's okay - just listen to your body, when you need to rest, rest if you can, and when feeling a bit more energy then definitely keep up with the walking but taking everything only at the pace that is right for you just now. Still rooting for you!
Craig
lori93950 craig07920
Posted
thank you craig .... i had 2 really bad days with the dizziness could not do anything ...tried to do my walk but i panicked as was so woozy and off balance ...please GOD it goes away
craig07920 lori93950
Posted
Oh Lori very much hoping that the dizziness is settling down, you've had such a time of it and must be so fed up and tired of it all. It is understandable to feel panicked at that, dizziness is a very frightening and unsettling thing, just hoping so much it can be better towards the end of the week and over the weekend - look after yourself Lori still thinking about you and praying for you.
Craig
lori93950 craig07920
Posted
thank you craig ... yes it was really really scary ..im dizzy most days but can power through . this time i couldnt unfortunately and really does undermine your confidence.
craig07920 lori93950
Posted
I know Lori my confidence was also really affected by the awful time I went through with mono, it can take some time to rebuild but once a period of stability comes along (and it will), your confidence will grow and things will come back to you - so don't worry is the message (easier said than done though I know).
Craig