Fatigue, dizziness, nausea following flu-like symptoms for nearly 4 months. Mono?

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Hi everyone,

Pretty new to these forums but I've been ill for about 3.5 months now..and have been doing a lot of research into CFS as some of the symptoms match mine and been paranoid about whether or not I have CFS or mono. I am a 28 year old male and used to be very healthy and in the best shape of my life before I suddenly came down with this and the last couple months of my life has been like hell and the worst thing I've ever gone through. I was wondering if someone could tell me if they think I have it or not...or if someone has any idea what I am suffering from. Please bear with me for this is going to be quite long.

Mid-December 2017 - Sudden onset in Korea

It all started when I caught a weird flu-like bug going on vacation to korea back in december and experienced sudden flu-like and food poisoning symptoms like diarrhea, nausea, severe bodyaches, chills, severe fatigue and weakness, loss of appetite, and sometimes shortness of breath that landed me in the ER a couple times. Despite the couple trips, doctors couldn't find what was wrong with me as urine samples, blood tests, flu tests, and xrays all returned negative. 

Late december-Early Jan 2018 - Return to US and seeming recovery

So I cut my vacation short and returned back to the states to get re-evaluated by my PCP. Immediately upon my return, I saw my PCP who told me he thinks I'm just going through the remnants of a bug I caught in Korea and should be back to normal soon after it runs its course. Couple days upon coming back, I realized a brief reprieve in some of my symptoms, diarrhea had subsided, appetite was slowly coming back, and I started experiencing some upper respiratory symptoms for a couple days such as cough, runny nose, congestion, but the debilitating fatigue, bodyaches, and weakness seemed to have dissipated.. then there were a couple days of feeling 90% normal aside for a very slight sense of dizziness which I attributed to just being bed-ridden for awhile and jet lag. Overjoyed with my recovery, I went out to go shopping at outlets, went out to meet with friends, and did some music practice...things I did normally before I became ill. I was still on vacation from work so there was nothing stressing me..

Early to late January - Relapse of symptoms

until I got into a big fight with my girlfriend and thought we were going to break up...which got me extremely sad...I remember crying myself to sleep that night. The following day I remember a relapse of symptoms similar to how I felt in Korea which included the severe fatigue, nausea, weakness, body aches, some heartburn-like IBS symptoms but no diarrhea, and again a decline in appetite, and on top of this, I had trouble falling asleep and staying asleep. Waking up in the mornings I felt unrefreshed, dizzy, and not too different from how I went to sleep the night before. Needless to say, I went back to my doctor who prescribed me so antidepressants (zoloft) to try and also did a full workup of my blood which came back normal again. He told me to give it another week or two and that I should feel gradually better.

Feb.-Mar. - Gradual recovery with periods of relapses in between

So for the next couple weeks I went through periods of briefly feeling better where I can run a couple errands outside like groceries and do some light exercise (walks) and "crashes" where I would be house-ridden and able only to do basic things like eat, wash up, watch tv, etc. I took a disability leave from work as I was unable to focus at work and the one day I tried to return, I ended up in urgent care with another attack similar to what I experienced in korea only to have the doctor send me back home saying everything is checking out fine. After about 8-9 weeks of this I did notice some gradual recovery with some lesser relapses in between:

- I would be asymptomatic for longer periods during the day (I would have a 3-4 hour window of "no symptoms" in the beginning of jan when symptoms first re-emerged...then at this point it was more like I would have 3-4 hours total during a bad day I would feel symptoms and sometimes no symptoms at all on good days)

-I started getting 7-14 day streaks of no symptoms.

-On days I would exhibit symptoms it would be a less severe form of it which would include:

-fatigue, but not quite as debilitating

-slight loss of appetite

-no more ibs or trouble falling asleep

-no more diarrhea

-no upper respiratory symptoms at all

However, about every other week, I would experience a return of symptoms lasting a couple days (occuring in 1-3 hr episodes during the day) that included:

-extremely tired (physically/mentally)

-unmotivated to do anything, would dread doing things at times as if impending doom

-usually cold

-slightly nauseous

-feel sensation of stuffiness but cold as if indigested

-tingly sensation throughout arms and body as if bloodflow is restricted

-happens more often in the afternoons after some exertion

-feel slight pressure in the sinuses

-usually accompanied with loss of appetite

-lightheaded/dizzy

-usually sad/moody/depressed/easily irritable/very sensitive

Reported all this to my doctor and although he still stood by his initial guess that it was just a bug that was working itself through my system, he referred me to an ID specialist who ran about 15 different viral/immune tests on my blood including HIV, EBV (active), CMV, HHV6, syphilis, ESR, ANA, blood cultures for blood bacteria, IgG, IgM, and a couple others which all came back negative...however for EBV I did show positive for memory EBV antibodies/antigens(?, forgot the exact test name...basically doc said that  most people have these in their system from a past infection they had when they were really young that may have been asymptomatic...however I don't remember ever getting mono). Following all the tests, both doctors stood by their initial guesses that I just may have caught a very bad form of the flu (influenza) that may have not been properly detected in korea that is taking a particularly long time to clear out of my system given I was under stress and time zone changes and different environment (record cold temperatures in korea...I was never exposed to such cold temperatures in my life as I am from Southern California).

Currently - Return to full-time work

Since the results of the viral testing has come back I haven't noticed (at least to me) any significant improvements in my symptoms... and so decided to try acupuncture for a few weeks which I have not noticed too much of a noticeable improvement in symptoms...stil couple days to a week of good followed by symptomatic days where I would experience the symptoms I mentioned above in varying intensities for 1-3 hours a day. My girlfriend and family suggested that I return to work and try to expose my body to normality again as I used to be a very active/healthy guy (would go to gym to do strength training 6 times a week, and sometimes play couple hours of full court, high intensity basketball on weekends on top of a 40+ hour work day and very involved in my local church community) and perhaps my body was just deconditioned from such a long period of inactivity and that maybe it was a mental/psychological thing.

So here I am having completed one full week of work (9 hour days) now and noticed the following things:

-I can get through a full day of work, albeit barely (yay!)

-some days are better than others.

-I am extremely exhausted after work...feel like I can't move a muscle.

-Current symptoms include:

*a constant dull pulsating pressure sensation behind my nose(sinuses) that causes mild to moderate dizziness and sometimes mild nausea, can last all morning and afternoon..I feel like this is the only symptom that has increased in severity perhaps because my uptick in activity?

*a drastic increase in appetite (i feel frequently hungry)

*increased urination..need to urinate every hour it seems like

*constantly slightly tired (sleepy)

*slight fatigue/body aches during the morning/afternoon..to pretty severe for about an hour or 2 after work.

*moments of unmotivatedness/difficulty concentrating

*moments of constricting of airways in nose making it difficult to breath productively but no mucus

It just feels like it's 2-3 times harder to go through a normal day of work than it used to be before I got this illness. I am no longer sad so I stopped taking my antidepressants and feel like I'm constantly operating on a deficit of energy since returning to work... I am so sick of tracking how I am feeling and not being able to exercise like I used to or hanging out with people like I used to because I'm so "tired" all the time...Now I'm telling people at work that I am "better" but I'm definitely not and feel like I may hit another major crash going on like this... Obviously CFS is a far-off assumption (says my doctors) but I have been really identifying with some hallmark CFS symptoms like post exertional malaise, extreme unrelenting fatigue, and unrefreshing sleep... however I have experienced a gradual degree of improvement too? Sometimes when I'm in the middle of my pain I forget the strides I have made. Regardless, there are some things that I have yet to be checked as my doctors have employed a "watchful waiting" strategy which has been very frustrating to me...but here are some things I am suspicious of:

-hormonal issues (thyroid problems or adrenal insufficiency/fatigue?)

-heart issues (sometimes i feel stuffiness in my chest as well as tingling sensation in my arms as if circulation is not happening as it should...I have an odd feeling my ongoing dizziness might be related)

-sinus issues (I have a history of sinus infections and thinking maybe it may be related...although my sinus pressure/dizziness doesn't come with any mucus, runny nose, discharge, or any of the classic sinusitis symptoms)

-neurological issues (I have had a history of 2-3 months of severe headache/facial pain episodes, some people told me the pressure in my sinus/head can be a migraine)

Seeing my doctor this coming Thurs and going to demand referrals to an ENT, neurologist, and an ECG, along with a hormonal test which I'm not sure why he did not do earlier... I mentioned some of these before but he would simply just brush me off saying those were highly unlikely and since I'm a healthy young guy, I don't fit the usual "demographic" of CFS or any other of these symptoms and keep insisting this is just a long-lasting flu. But 3.5 months to now nearly 4 months...really? 

Somebody please let me know if I am just going crazy or maybe it's time to change my PCP... but if somebody has gone through something similar like this for 3-4 months and recovered, please let me know so that I know I'm not going crazy. 

Also, I really value honest opinions and not people who just want to make me feel better. I really don't mind if what you have to say is negative as long as it's constructive...I have been suffering with this for awhile but if what worked for you is just having a simple change of attitude, please let me know what kind of treatment techniques worked for you or it just simply got better over time! I find that recovery stories are the most helpful and best thing to read about here.

If you made it this far..thanks so much for reading and I am looking forward to your responses. My doctors are "confident that I will make a full recovery and that this will be just a season for me" and I am surely hoping so...Thanks so much!!

0 likes, 17 replies

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17 Replies

  • Posted

    Hey there.  First and foremost you are not going crazy.  Many people on this forum have been through the same as you.

    I'm at 8 1/2 months and was initially diagnosed with mono.  But it was hard to believe one virus could make someone feel so bad for so long.

    I still suffer from fatigue, painful weak arms and legs, intermittent flu like feeling, and the tingling bad circulation feeling in my arms and legs. I've seen so many docs.  And now I'm trying to see a rheumatologist to rule out auto immune problems.  I totally completely understand where you're coming from.  I too was incredibly active and then totally debilitated.  It's so hard.

    I'm better than I was, I'm not bed bound anymore and can get through normal things during the day.  But I can't exercise and anything like two flights of stairs or speed walking will relapse me.  

    It's hard to measure the progress in days and you have to really look at it in months.  For adrenal support, I'm taking Ashwaghanda and I started taking CoQ10 for energy.  Both have helped.  Hang in there!  It's a slow slow recovery but people here have recovered and that gives so much hope! Also- a good naturopath doc is really helpful.  

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    • Posted

      Wow, thank you so much.  That was very helpful.  I was thinking of seeing a naturopathic doctor in my area but want to wait until I've finished the rest of my testing with my PCP.  

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    • Posted

      I was so disheartened with western medicine.  I was basically told they didn't know what was going on and to wait it out.  I refused to accept that and my naturopath didn't accept it either.  She helped me start a supplement regime and did some other testing (lyme, etc.).  

      Also- you're only acute with Mono/EBV for a really small window (like 4-6 weeks I believe) so it's really hard to catch it.  You can absolutely have had mono and they didn't catch it when it was acute.  Everything you describe sounds like what I've gone through. 

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    • Posted

      Hope you're doing a bit better Lisa, you're still in my thoughts and rooting for you. It's so hard when the world doesn't understand what this virus is like and because you look fine and can get up and walk about when not feeling too bad that you can't be that bad - if only they knew how it makes you feel and how debilitating it is, especially when you've been used to an active lifestyle. That's why I think the folk on the forum here are great, because they understand and help each other.

      Still believing in your full recovery Lisa, 100% believing that and trusting Jesus.

      Craig

       

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    • Posted

      Hi Craig! Again thank you for your sweet and comforting words.  You are the brightest light! 

      I’ve had a few decent weeks. Although today I’ve got that old familiar weak and painful leg thing upon waking up. 

      It’s funny/ people are anyways like ‘you look so good!’ and assume I must be back to normal. But of course you can’t see the post viral stuff. It gets frustrating. 

      I have one more Lyme test to do but so far everything has been negative. 

      I’m hopeful that things will just slightly less suck as time goes on and one day I’ll be like ‘hey! I don’t feel sick anymore!’ smile

      I hope you are feeling better with your back. Have they found anything that works? Is surgery an option? 

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    • Posted

      Thanks for your uplifting words Lisa, you are very kind too and I really love the warmth and generosity of people on the site, despite everyone going through a difficult time in their lives. Hopefully the unity and goodness of folk on the site can be one of the weapons which break down the mono and other woes affecting people's lives here, believing it can and will be.

      Hoping this pain settles down for you Lisa. Yeah I know what you mean when I had the virus I remember one of my family members saying I looked great as if I had been working out, because I actually put a bit of weight on rather than lose it.

      Thanks for the best wishes with my back too, still having some issues and bother now with prostatitis too which is worrying me - really hoping all this will pass.

      Thinking of you still and rooting for you!!

      Craig

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  • Posted

    Hi Peetz,

    I agree with Lisa, if it is mono / glandular fever that is causing these symptoms, then it is very normal for the horrible symptoms to be going on for this length of time. IN NO WAY does it mean Chronic Fatigue, it took me 9-10 months to start to see a real turning point from mono, but I did get fully better and return to full health, and I was a similar age to you when I had it. It was certainly one of the worst things I've ever been through but it did get better, and you do get back to full health after it, even if it takes a bit of time. Just want to offer some reassurance in this respect. If recovery doesn't come right away, don't panic because with mono it does come.

    Vitamins and herbs really helped me during recovery - a good strong multi-vitamin per day, high doses of Vitamin C (1000mg-3000mg per day), B complex (great for nervous system and energy levels) and immune boosting herbs like siberian ginseng / echinicea.

    Rest is really important during recovery from mono, a key mistake people make it to try and push through like a normal virus but that just seems to set things back further. You're doing the right thing to take some time out and to get checked with doctor - that's all you can do and remember if this is mono you will recover completely! Hang in there!

    Craig

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    • Posted

      Very encouraging.  Thank you so much.  My doctor tested EBV on me and I only had evidence for "past infections" and no acute infections and thus he ruled it out...does that mean it can't be mono?

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    • Posted

      I’m sorry to hear that your going through a really awful time and mono certainly does play tricks on your mind. Especially when Symptoms cross over from different conditions.

      I’m on month 8 and used to be extremely fit before I came I’ll - I just finished training for a marathon last May and became poorly in August - I’m grateful I achieve it before this.

      I understand how you feel become concerned that it could be something else - I was bite by a tick 2 years ago and I’m

      A bit paranoid that it’s lymes masking as EBV.

      Have you ruled out all infections disease from your travels ? 

      I’ve been reading and practising a good book lately. It’s all about gut bacteria - helping you heal from inside out. There’s loads of studies out there.

      Sounds a bit awful but you can send away a poo sample to see what your gut bacteria is like to help improve it.

      It’s called the Clever gut diet. There’s also a really good book called the plant paradox - again all about healing the gut.

      The one thing I have helped, being in control is eating whole foods, nothing processed and cutting down on meat. Yoga and acupuncture - use someone who practises in Chinese medicine.

      I think overall be kind on yourself. Is not working long days going to delay your recovery - can you reduce your hours.

      It’s a nasty business being unwell and not knowing how long it will take and what is really wrong but hopefully time will heal with a little help from yourself 

      Take care and recover fast 

      Catherine 

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    • Posted

      Hi Peatz,

      I get it how frustrating it must be not to a firm diagnosis. When I had mono, the blood test showed positive for it in the first few weeks but then after that it showed as fine, even though I went through a difficult time for months after it like you and many folk on here. It probably just showed the past infection at that point like what yours is showing now, so there is a possibility that it could be mono and that the infection was a recent past infection I think, although I'm not medically minded or anything worth talking the doctor about for sure.

      Getting other blood tests, etc, done was wise, and you're doing all you can right now - just hang in there and want you to know that I believe you will get better, I believe that God heals and that He will get you through this and restore you to full health again - just really hoping things settle and become more manageable at the moment. It's horrible when feeling so low and stressed about it, really thinking about you - there is hope without doubt because of God.

      Craig

       

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    • Posted

      That's some really interesting stuff there Catherine, do you think anything like that would be good for prostatitis type issues too? I'm having issues with that and my lower back at the moment unfortunately.

      Well done on achieving a marathon by the way, that is outstanding well done!! And although it seems maybe a distant memory now, you will get back to full health again still from this Catherine, I truly genuinely believe that - hang in there.

      Craig

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  • Posted

    Hello,

    I am sorry to hear you are unwell. Your symptoms and journey sound like what I have gone through. I was previously an active 25 year old working professional woman and in mid November I came down with what seemed like a nasty virus. At the beginning I had awful fatigue and weakness, chills, no appetite. Then I had continued weakness and fatigue (though not as bad), sore throat, sore muscles, aching joints, shortness of breath, chest pains, chills, on and off appetite. 

    I would also have days where I feel better and then for a week I will feel very ill. My blood tests have all been fine - only thing that is off is my urine has white blood cells and blood but no bacterial infection. I also have terrible flank pain on one side. CT, Xray, Ultrasound.. all clear. I am so depressed.. it is now April this is 5 months for me. I haven't been able to work. I feel like I will collapse at any moment. I am losing the support of family as they are confused why some days I am feeling okay and others not. 

    Doctors diagnosed me with post viral fatigue syndrome / CFS but my EBV and CMV show past infection. I feel so hopeless and alone. I wish you the best of luck, and I hope that you will recover very very soon. 

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    • Posted

      Hey Van,

      Just wanted to let you know I'm still rooting for you, I totally understand how you feel, it's very scary and frightening to go 5 months and feel so awful - it drains you physically and mentally, and that awful sinking and alone and helpless feeling is the worst in the world, I wouldn't wish it on anyone.

      I just want you to know that what you're going through is normal and typical for the virus, horrible as it is, and that I still totally believe that in another few months time things will be looking upwards - you're riding out this worst phase, after 5 months I was still quite unwell with it all but after 10 months recovery really started happening (that doesn't mean to say it will be as long as that for you, everyone is different and you're young and that's a real advantage).

      Hang in there and remember you WILL beat this, God is on your side and is gonna defeat this thing for you. Take care and be kind to yourself, do something stress free that you enjoy today that doesn't take loads of energy if you feel up to it - you deserve it, even if it's just relaxing watching tv or whatever.

      Craig

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  • Posted

    Hey Peetz,

    It’s been 5 months since you posted this and after reading your post it feels like I was reading my own symptoms.

    I am going into my 3rd month with mono and I have had most of the symptoms you have mentioned. Recently I have been feeling quiet good (about 90%) and I thought I recovered. Then for the last 5 days I have had symptoms return:

    -vertigo

    -nausea

    -Feeing generally ill for 3-4 hour chunks

    -loss of appetite 

    -mild throat raw feeling

    I have been off work aswell for 2 months but due to start back on Monday. 

    How are you feeling now? Have you returned to normal or Are you still experiencing symptoms? 

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    • Posted

      Hi Thomas,

      Yes. After 9 months of being initially sick I was finally diagnosed with an acute bartonella infection back in July.  I'm currently treating for it with an aggressive antibiotic protocol which includes multiple antibiotics, detox supplements, probiotics, and LDN.  I initially thought I had lyme but tests came back negative so my LLMD (lyme-literate medical doctor) tested me for the major known co-infections for lyme which are bartonella, babesia, ehrlichiosis, anaplasmosis, and a couple others. 

      If you haven't already been tested for these you should through a LLMD if you are still sick.  Do you recall ever being bitten by a tick?  Regardless, it has been known that you can get bartonella through many vectors (mosquitos, flies, fleas, ticks) so it would be good to get tested for these.  This is all after you've went through the gamut with other tests... I visited 11 specialists before I found my current LLMD who is treating me and starting to feel much better...planning to go back to work in a couple months.

      Hope you get better. Let me know if you have any questions.

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    • Posted

      So sorry to hear you've been going through this awful time Peetz, hoping and praying that things are going in the right direction now and that you can get much better from here on in. 

      Just to reassure Thomas too that if you have a diagnosis of mono, it is by far most likely that that is what the cause of your symptoms are and not anything else, so don't want you to think maybe it could be something else like the horrible thing Peetz has been through - symptoms of these types of things can be very similar I think.

      Hoping for a good weekend and period ahead for you guys.

      Craig

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