4th year of this nightmare
Posted , 5 users are following.
I used to be superhealthy until April of 2017, when I contracted the virus at the age of 29.
I got tested for everything under the Sun and by elimination arrived to Mono that summer.
Symptoms I had for the first 6 months:
- headache
- low grade fever
- fatigue
- uncontrollable desire to sleep
- constant pressure in head
- red eyes
- puffy area above eyes
- tinnitus
- scalp sensitivity
- skin hypersensitivity
- dry eyes
- stomach issues
- unformed stool
- chest pain
- spaced out lightheaded drunkish feeling
- dizziness
- pressure above eyes
That summer of 2017 I was also convinced it's chronic fatigue syndrome and as precaution took: Valtrex, Immunovir and Immunoglobulin beta for 6 weeks. I don't know if it helped or not.
Was not able to hold a job, was fired 5 times since the beginning of mono. Don't work now but I believe now I'm able to hold a job, because last 2 places didn't fire me, I left due to personal circumstances.
Symptoms I still have, now they come and go, 3 weeks sick, 2 weeks normal, 1 week sick, 1 week normal, etc. Symptoms are exacerbated by periods and ovulation and pms and common cold and lack of sleep, and potentially coffee/energy drinks:
- fatigue
- needing naps in the afternoon
- scalp sensitivity
- skin hypersensitivity
- dry eyes
- puffy area above eyes
I am in despair. I hope it will pass. 3 years 1.5 months and counting...
0 likes, 17 replies
bugbear123 gee63440
Edited
Hi I really feel your pain.
I am going to suggest that you get your thyroid tested for free T3 as its well know that EBV
attacks the thyroid often temporarily but sometimes permanently. NHS dont often check free T3 so it would be worth your while getting a full thyroid check. I was very lucky and have bupa so was able to see a brilliant endo who detected it.
If you are not sleeping well take something to help you get deep rem sleep. This is vital to recovery as there is lots of evidence that viral infections attack the central nervous system
and stop you going into deep sleep. This deep sleep is vital for recovery. Amytriptaline is best for this.
90% of immune health is in the gut. My feeling is those that don't recover well from EBV have some kind of IBS and the gut biome isn,t working properly. Alforex is a brilliant probiotic. But you may need to try lots of different ones to get the balance right. Collostrum is also good at
at reinvading your gut with good bacteria. You will know if you have good gut health by looking at the bristol stool chart.
The biggest break through for me was amytriptaline. The deeper I slept the better i got.
The hormone T4 is converted to T3 in the liver and as we all know the liver is attacked by EBV
so take milk thistle to heal your liver so that your hormones can start working well again.
Try cutting out gluten and dairy as these may be affecting your gut health.
Keep stress out of your life. Amytriptaline helps with that by calming the nervous system down.
Many of my relapses were due to stress.
I hope you find healing from this terrible virus. Keep strong
lisa29739 bugbear123
Posted
Wow Bugbear. You speak everything that I'm going thru. Did you make a recovery? I'm almost at year 3. I have been diagnosed with chronic fatigue syndrome and fibromyalgia. One doctor thought I had lyme disease. One of the biggest things is definitely getting into stage 4 sleep. This virus kept me in stage III where I would dream all night. If I take something like a very small dose of Xanax before bed, I sleep soundly and I always feel better in the morning. Also gut health is huge! My sickness comes with waves of gastritis and we are trying to figure out if I have a bacterial infection that’s causing it like H Pylori or if it’s fungal. Thyroid is also huge. Mine is totally out of whack (high t4, low t3) but I'm not tolerating thyroid meds very well (been on them for 10 years). They cause massive anxiety/shakes if i try to up the dose or add in t3. Its been frustrating. What a horrible weird virus. I went from super healthy and active to incredibly sick overnight. And Gee I have the same up and down pattern too. I had a decent 7 weeks (with limited activity) and just crashed out of nowhere last week. So frustrating and confusing.
lob12506 bugbear123
Posted
im ill for 4 years now and everytime I am too active too late I wake up after 5 hours of sleep and feel awful. basically the worse I feel the worse I sleep and then feel even worse. I need to try the amytriptaline
lisa29739 lob12506
Posted
Same Lob. Sleep almost always makes me feel worse. Have you tried massage? And if so does it make you worse? Anytime anyone loosens up my lymph tissue my body feels like I have mono all over again.
lob12506 lisa29739
Posted
no I havent, for me I get a bit of symptoms every time I feel a bit cold, or do too much activity without rest. Yesterday was a bad day like that for me, but I still managed to drive for lunch, write assessment for my uni for 3 hours (electromagnetics-lot of thinking) , played some video games and went to sit down with my friends in the wvening for a bit. Maybe the last one was a bit too much for me, but to be honest at this point its not such a big deal. Like maybe I would feel okay today if I didnt go, but now Im gonna feel alright tommorow or day after.
lisa29739 lob12506
Posted
wow – that sounds like such an improvement! On my good days I can maybe go to a movie or out to dinner. I just came off three weeks of the worst relapse. I had blood work done and my EBV antibodies were super elevated so I’m thinking that’s what my problem is. Just need to figure out how to get it to go dormant so it stops flaring and making me feel like I have mono. I hope you continue to just keep improving! What a long stupid miserable virus. But it sounds like you were coming out on the other end!
olivia30213 gee63440
Edited
Hi Gee,
I am sorry that you are still feeling this way four years later. I am on about a year and a half and I still will get random symptoms either during ovulation or right before my period. Mostly random aches and pains, bladder pressure/frequent urination and/or post nasal drip/extra mucus and of course generally feeling fatigued. I don't know how much of that is still the virus or if it has just left me extra sensitive to certain things. I have read many women's complaints that their symptoms seem to flare with certain phases of their menstrual cycles.
Have you ever had blood work done again to see if the virus is still active?
bugbear123 gee63440
Edited
i too thought i had fibromyalgia because of the pains i was getting.
i decided to try probiotics and cut out dairy and gluten and thats when i saw a dramatic improvement.
my mother died in february and my sister was close to death with covid and the stress made me relapse. Amitriptaline
has helped me to recover again. i dont think we need to worry about taking it forever. amytriptaline is used for nerve
pain and in a way our nerves have have been altered by EbV. we have to unlearn the nerve damage and tricyclic antipressents are good at that. in fact they are the first tablets recommended for fibromyalgia.
i noticed one difference this time with my relapse. my glands were very sore and hard behind my ears. this gave me hope
as they never had before but initially like a lot of others i thought i had lympoma they hurt so much. however i would say
if your glands dont hurt your body is not fighting the virus and winning. when our glands hurt that tells doctors our immune
system is working well.
i have decided to try and come off my T3 meds as i feel the low T3 was due to liver inflamation from EbV. i will keep you posted
lisa29739 bugbear123
Posted
A rheumatologist diagnosed me with fibro. He wrote me a prescription for gabapentin, a nerve blocker. I've been too nervous to try it as I'm so sensitive to everything. My naturalpath prefers Cymbalta. Which I think is similar to what you take. I'll look into it.
I adopted a keto diet and that helped. Although nothing helps when I'm in this kind of flare. The glands issue is interesting. I had one swollen one in the back of my neck for 4 months initially and now nothing. My flares seem to come on with physical exertion or stress (even good exciting stress). But they usually start with stomach issues then move into massive fatigue/fluish/pain in my muscle/joints. So it makes me wonder how my gut is involved.
I'm so sorry for your loss. That's so hard even when our health is good, let alone compromised. I'm glad your sis pulled through. And I hope your relapse is swift!
bugbear123 gee63440
Posted
Gee
Your high T4 and low T3 sounds like you are not converting T4 to T3 which is what my endo discovered. Maybe due to liver inflamation from ebv??.
. HE precribed T3 only to get me through the cfs. it really helped. unfortunetly my last post was moderated which showed
a redditt post from a person who cured her fibromyagia with probiotics. If you search you will find it. That was a light bulb
moment for me. Most of my ebv symptoms went once i fixed my gut biome. I hope you manage to figure out the missing link.
Also i dont know your age but are your hormones all normal. Hormones play a huge role in viral recovery.
Regarding my recovery I would say i now live a normal life and am over the worst but it took a lot of digging and searching.
It took two and half years. I feel lucky as i am 60 and we all know immune health deteriorates with age. I had to bring
my gut biome back to that of a young person to recover. ALflorex is a patented probiotic and only one manfacturer has the
rights to sell it as they took years to discover it. Lactobacillus infantus is what mothers give to babys in breast milk to protect
them. I think scientists are only at the beginning of discovering what all the millions of bacteria do in the gut. I really believe
one day there will be a probiotic for every illness. Most scientists say it is the most exiting area in medicine right now.
lisa29739 bugbear123
Posted
Oh shoot i missed this response- Yeah I am not converting. My liver tests have always been really good and I take liposomal glutathione so not really sure why I'm not converting. When we tried direct t3 it gave me massive anxiety, shakiness, too much frenetic energy and I would crash the next day. It's like my adrenals can't handle it.
I got mono at 37 and Im now 40. My hormones are slightly off. DHEA is low. And my estrogen to progesterone ratio is low for estrogen. Cortisol is also a tad low in the morning and sometimes spikes around 10:30 pm so i have to go to bed by 10.
We've checked so many things and I've tried so many treatments. I think I'm going to hardcore work on my gut. I'm pretty healthy but I'll try and add probiotics and cut back on dairy. Thank you for your responses!
bugbear123 gee63440
Posted
did you get regular blood tests on T3. The correct dose is very hard to get right as everyones dose is as unique as a finger print.
For example it took me 6 months to work out mine was 17.5 mg a day. Any more than that i felt terrible. You should also have had the strachen test to prove its your adrenals. My endo in london is excellent I can private message you his details if you want.
lisa29739 bugbear123
Posted
I was referred to the top Endo in Seattle. He helped a ton of people I knew. So what he did was lessen my levothyroxine and then add in T3. It started as 2.5 in the morning and a 2.5 tablet in the afternoon. It made me so crazy jittery and anxious. I worked my way up to 2.5 in the morning and 5 mg in the afternoon. It didn’t make me feel good at all. And after six weeks my blood work showed that my TSH went up to 4.5 - so basically in hypothyroid mode – and my T3 didn’t change at all. My body is being really really weird. I have been on levothyroxine for 13 years without any problems. Then I got mono and suddenly my body wanted nothing to do with it.
I have not had that test. I had a cortisol test that measured cortisol throughout the morning/day/evening.
If I was in England I would totally take your rec! That's amazing that you can tolerate the t3! I will keep trying to explore that avenue. I do take selenium and that's supposed to help t4 to t3 conversion.
bugbear123 gee63440
Posted
If you know you are not converting well then LEVO is not good idea. You may be better just taking T3 on its own like i do.
Levo nearly drove me insane. I would give T3 a try on it own.
lisa29739 bugbear123
Posted
I will bring this up! I had a benign tumor on my thyroid at 19 and when I was 27 they treated it with radioactive iodine. It mostly got rid of the tumor but it also killed part of my thyroid so I have to be on thyroid medication. I never thought to take just t3!