"Mono" with neurological symptoms = Not EBV, but what then?

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I wrote a few posts on this forum last spring, after having many months of debilitating flu like symptoms and nervous system related symptoms. After a while of obsessively looking for recovery stories on the forum, and feeling discouraged when I didn't find many, I promised myself I wouldn't return to the forum until I was well and could provide you all with an uplifting recovery story of my own. Well, since I am still not well and have come to realise a few things about this virus, I have to break that promise in order to discuss my thoughts on this virus/illness/condition with you. Not sure what I am looking to achieve, but hopefully get some further understanding on the mechanisms of this mystery virus, or whatever it is that is causing these strange symptoms.

My story

Summer 2016: Brain fog, memory problems and a buzzing/electrical feeling in my whole body started. Occasional nausea and irregular heartbeats. Chalked it up to not enough sleep. 

Oct 2016 - April 2017: New job and new relationship.

Started getting sick a lot with flus, colds, stomach problems, fungal infections and recurring cold sores (had them all my life but they increased in frequency).

March 2017: Stressed out from my new competitive job and from having to call in sick all the time. Developed shingles (not common at the age of 26) along with headache and flu like symptoms. 

April 2017: After the shingles had healed I started feeling dizzy, nauseous, nervous, had joint and muscle pain and was extremely fatigued. Quit my job as I felt my body was breaking down and I couldn't keep up with work.

May 2017 - Aug 2017: Started a new low-stress job. Had occasional joint pain, pain between my shoulder blades and random burning on my skin during the summer. General health check only showed slightly elevated liver enzymes.

Sep 2017: Moved in with boyfriend and started exercising several days a week. Soon got neck pain and a pressure like headache that stayed with me 24/7 for seven weeks straight and wasn't relieved by pain killers.

Oct 2017: Caught a nasty flu-like virus with cold symptoms that stayed with me for 4 weeks.

Nov 2017 - Apr 2018: The October flu never really went away, or rather, it morphed into the following symptoms:

- Muscle twitches and a restless/buzzing feeling in the whole body

- Muscle weakness

- All over joint pain and burning muscle pain

- Sharp nerve pains in forearms, hands and head

- Tingling, pain and numbness in whole left facial nerve + jaw tremors

- Intense pain and soreness in thoracic spine

- Burning sensations on skin (felt like shingles but without the rash)

- Blurry vision, light flashes, eye floaters, sensitvity to light

- Sound sensitivity and high pitched tinnitus

- Nausea and loss of appetite

- Periodically severe anxiety and feelings of depersonalization

- Brain fog and dizziness

- Racing heart for no reason, irregular heartbeats

- Breathing problems, felt like the breathing reflex sometimes just stopped working

- Insomnia despite exhausted, night sweats

- Low grade fevers and sore throat almost daily

- "Chemical smelling breath"  according to boyfriend

- White tongue (brushing and scraping made no difference).

- Petechiae in throat and on neck, chest, arms and dermatographia

- Hair loss and beau's lines on my nails

All symptoms worsened dramatically after any kind of physical exertion. 

I saw several different doctors and specialists and had ALL the tests done (Lyme disease, MRI of brain, spinal tap, ophthalmologist, blood panel, liver enzymes, STDs, allergies etc etc... ) Everything looked absolutely normal. In april 2018 I demanded a monospot test despite already having had mononucleosis in my teens. The test turned out to be positive and I was SO relived to finally have an answer to my symptoms and knowing I would eventually get well. But the months came and went and I still had severe relapses after any kind of physical exertion. At best I felt 85% better for up to 5  days before crashing again. I saw an infectious disease doctor and told him about my never ending symptoms and the positive monospot. He said it was highly unlikely that I had had active EBV for over a year and that what was causing these kinds of symptoms. He said that the monospot test is very unreliable and often shows false positive due to other reasons such as inflammation/other viruses etc. He thought it sounded more like ME/CFS, and said that one CFS-theory is that an infection throws the immune system off balance and causes it to attack the bodys own nervous system. When they didn't find any measurable amount of EBV in my blood nor spinal fluid I went with the CFS/ME theory. I started taking really good care of myself in hopes of being one of those who actually recover from it within the first few years, before it becomes chronic. The severity of my symptoms have definitely lessened since April. My hair has stopped falling out (phew!), my body aches have lessened, brain fog is lighter etc... But I still have some level symtoms each day and I can definitely not do any kind of straining activity without relapsing big time. So yeah, it does seems to be along the lines of CFS/ME. 

But here comes the mysterious part... My boyfriend has been experiencing a few similar symptoms to what I have had the last year: Night sweats, sharp shooting pains in his jaw and ear, muscle twitches, pain in hands and forearms and dizziness. They seem to have been mild, he has only mentioned them occasionally and he hasn't felt sick or flu like with them, so I have hoped that they were only coincidences and convinced myself  that I was being paranoid about them sounding similar to mine. (Note: he hasn't been aware that I have had these specific symptoms as I have had so many different ones that I have feared sounding like a crazy person if I told him about them all..) Anyways, now one of my closest friends has told me about these exact same "mystery symptoms" that she has been experiencing on and off for the last two years! (again, she doesn't know that I have had these specific symptoms either. I have just told everybody that I have had mono for a ridiculously long time as this is what I have believed). And now that I start thinking about it, I can think of a couple of more people in my social surrounding that have fallen sick with  some unknown virus this last year and been sick for an unreasonably long time. These people are all over the age of 27 which makes it highly unlikely that it is EBV going around since 95% of adults already have had the virus and reactivation is very uncommon. And the symptoms don't really match up with those of mononucleosis, as much I would like to tell myself that they do.

When I read on CFS/ME forums (warning: don't do it!) they do have the exact same symptoms as I do... But so do war veterans affected by "Gulf War illness"... And so do people who believe that they have "chronic lyme disease"... And so do people who believe that they have "chronic EBV".... 

Could all of the above really be caused by the same thing? What they all have in common are the symptoms and that no one has yet to found an explanation for them. They all seem to be somewhat contagious, since they all seems to cause occasional cluster outbreaks. This makes me wonder if there is some sort of undetectable virus that some people are more vulnerable to, and others are immune to, since not everybody are affected?

What are your thoughts?

And to those of you who have the same kind of symptoms as I listed, does anyone else in your social environment also seem to be affected?

All I know is I don't believe that my symptoms and the symptoms affecting some of my friends are due to EBV. But what then...?

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  • Posted

    Wow, sorry for an incredibly long post...redface  The questions at the bottom is really the important part.
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  • Posted

    Hey Isabelle. I’m on month 14 of the acute sickness starting. I was diagnosed with a positive mono spot 5 weeks into being sick And after seeing countless doctors. It took an ER doctor to finally think to test for it. Since then yes I have all your same symptoms. I go through constant ups and downs. I’ve mostly been able to drive through all of this thank God and clean the house and do a grocery run. But I can’t do anything physical and if I do a an evening out with dinner and a movie I will pay for the next day or week or several weeks. I too have had all the tests done. My EBV test doesn’t make any sense because it shows high antibodies for IgG but I’m still negative for the nuclear antigen and that should’ve gone positive by now. I just had Another round of tests done and I actually show reactivation for human herpesvirus number six. It’s like EBV where almost 100% of the population has it by adulthood but it lays dormant. Mine is apparently reactivated so I also have that going on. Have they checked your ferritin levels? Low iron doesn’t show up only in the CBC but you need to check your ferritin. Mine turns out is really low and today I’m going in for an iron IV and hoping that could be part of my muscle pain and fatigue and numbness. 

     I also am going to do an in-depth lyme and coinfection test just to try and rule that out. 

     No one else in my family or social circle has seemed to catch what I have but my 13-year-old daughter did start getting some weird symptoms around the same time I did. Mainly low iron and fatigue. But she’s been tested and she doesn’t have EBV. 

     If you haven’t checked out the Cortene lab, check them out. They are running a human trial right now with what they think is a cure for CFS. If it proves true it makes a lot of sense and would help a ton of people like us. It gives me a little bit of hope :-) hang in there. 

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    • Posted

      Hi Lisa,

      I have actually had ferritin levels checked (and more) and they were fine. What they did find was somewhat low B12 so I am on supplements for that. I also started taking probiotics as I read a study about them lowering inflammatory levels not only in the gut but in the whole body, specifically a kind called bifidobacterium infants. I bought a kind that contains specific type and a few others.

      Thats very interesting about the HHV6. I have read about tons of people with our symptoms that have reactivations of several of the latent herpes viruses. I haven't checked my antibody levels but my symptoms actually started off with constant cold sores (HSV1) and then shingles (VZV) as the final hit that kicked off the full body aches etc. So it definitely seems that I had some sort of multi reactivation of herpes-type viruses too at that point. 

      Thank you for the info on the Cortene lab trial, I read about it and it sounds very interesting! Fingers crossed that they are on to something! :-) 

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    • Posted

      Hey Lisa, as far as the nuclear antigen go, I have it the same. I read one scientific work where they stated that low levels of anti ebna are related to chronic ebv illness. Im in month 29 since falling ill and month 36 since my health startrd going downhill. Im studying 1500 km away from my home. Some days I manage to go to school, some not. Im playing in the band. I crash quite often. I usually recover within a week though. Have little bit of burning sensations and muscle twitching, irregular heatbeat. The only symptom that bothers me is this drunk like state I have constantly. Personally, I think its just that virus absolutely mangled my immune system and even if its not active these autoiimune/inflamatory processes still take place. Fun fact: when i get ill my sympzoms disappear for a while. Im taking transfer factor (immunomodulatory thinj) and i get these fevers from it. Every time I get fever my symptoms almost disappear. That just proves my immunity is f****d. Either it struggles to keep the virus at bay or its some kind of cfs thing. Either way the rexovery is th3 same. Do what you can without crashing and slowly increase activity. I hope Im not overdoing it now, but if i didnt go to uni, i would commit a suicide.

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    • Posted

      Lob, 

      I'm so sorry to hear things are so hard right now. I am also going through a very hard phase which has just hit me all of a sudden with sciatic pain which has brought on a real depression and fear again. Words can't describe these feelings Lob I know, please hang on and hang in there - I wish we understood better why suffering happens like this - I know for sure I don't want to be rich or have tones of material things, just want to be healthy and able to be well enough to fulfil God's purpose and be thankful to Him for how He's brought me through. 

      I pray He brings us both through these hard times Lob - thinking about you and remember just hang on. There is still hope with God even when it feels like there is none. 

      Craig

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    • Posted

      Hey Lob.  Holy moly yes. Every time I get a cold all my other symptoms go away. It’s like taking a vacation. No one knows why and you’re the first person to get it.  Also so interesting to hear about your similar EBV tests. The nuclear antigen should have gone positive by now- and stay positive forever. It’s just so bizarre. 

      I also have this HHV 6 that’s deactivated so my body feels overrun with infection. 

      My quest symptom is the bone deep fatigue that also causes this constant pain. Doesn’t matter if I’m sleeping or resting or what. It’s just always there. Then some days it disappears and I feel relatively normal.  I’ll do normal things (never exercise) and it’ll feel so good. But always within a week or two I’ll crash.  And it starts all over again. 

      I understand the depression. I’ve worked a few jobs (I’m an actor) and being on set makes me feel so so good and productive even though it’s a struggle. And I write while at home. And play a lot of video games. Luckily the brain fog never hit me so if I can distract myself from the misery of this virus I can keep the depression at bay. 

      I’m so sorry youve been sick so long. I’m only at 15 months and I’m still in denial. Here’s hoping science makes a breakthrough. 

      I’m currently on acyclovir and now am going to try an IV therapy with a drug called artemisinin which apparently is a hard core anti viral.  My doc mentioned ozone treatment but it’s just too expensive.  

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    • Posted

      I cant do anything without thinking about it cause I always feel like a dream, cant think straight, cant remember thinks and cant visualize images or colors. I feel like Im detoriating here cause Im tired and Im pushing through. Im very close to suicide. I made a deal with myself few months ago, either I make a major improvement or Im gone by the christmas.

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    • Posted

      Hi lob12506

      We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

      If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

      Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

      If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

      Kindest regards

      Patient

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    • Posted

      Hey Lob, geez I’m so so sorry you feel you’re out of options. Just know you aren’t.  Do you have a parent or a relative or friend who can advocate for you with the doctors? Most people with what we have are on anti depressants and they help. Have you tried them? Please seek help. Let the doctors know your mental health is declining. If they don’t listen tell a different doctor. And if you’re too tired to keep pushing it, find someone who will do it for you. There’s a small drug company that believes they’ve found the cure to cfs. They are on human testing now!! Their name is Cortene you can google them. It’s looking promising and it’s curative if it works. There’s hope. Science is finally starting to get it together and put resources behind curing cfs.  As crappy as it is to suffer from- at least it’s not 20 years ago. I firmly believe they will have treatment if not a cure soon. 
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    • Posted

      I understand how you feel. I have pushed through just like you. It is so hard especially when you look at the life we used to have. I never got sick until this crap. I have had some of the same thoughts you have had. I just wake up and go again. I have a son that I am raising and it keeps me going. I went through a divorce also. Craig has kept me going with his words of faith. I hope you hang on and things get better for both of us.
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    • Posted

      Hi Lob,

      I'm sorry I haven't picked up your message before now, been going through a really low spell myself with things lately and just even been struggling to get on the forums to read comments and things. 

      From being in a dark place myself at the moment with pain, health issues, losing my job, finding it hard to have confidence to get up and do the basics, I just wanted you to know I know what the suffering is like and how deep the hurt goes when you can't think straight or positive or see hope for the future. Lob, please hang on man, things are awful right now but don't make a decision that is permanent I really urge you man, I'm just so sorry you're feeling that way and I'm in that kind of phase right now where I don't know how to keep going on at times - it doesn't mean that I want to stop living just finding it hard to live the way things are for me right now - and I just wanted you to know I'm thinking about you and still believing in our God who I have faith is going to intervene in your circumstances and say enough is enough with the intensity of this before you are pushed over the edge man. 

      As with Lisa and Brent I just want you to know I care man. I just pray there can be a change soon man, I know you are desperate Lob, I know how it feels to be desperate. You've shown great courage man even coming on here and I don't know how you have had the strength to even post when feeling so low at times. 

      There is going to be another side to all this man. It's hard to see or feel or grasp when in the midst of what you're going through now, but God tells us clearly that He has a good plan for each of us and His plan is to give us a future and a hope. It's hard to hold onto that when we can't see anything going right, I know that all too well Lob. We just need to trust God with those words, it's all we can do right now and just hang on and rest when you need to and talk to people close to you and those you trust when you can man, carrying this burden yourself is too much it's important to talk to someone and tell them how you're feeling man.

      Try not to put a timescale on things man, don't even think beyond the present day and moment man. Just coping with and surviving that is much more of an achievement than someone feeling good and flying high and seemingly swimming in their life. I'm still believing in recovery for you Lob and I believe it's going to happen. I believe God wants you to know that He is working behind the scenes on your circumstances man, and even though the manifestations aren't there yet, they are going to be - so just keep holding on for now and don't put yourself under any pressure or time restraints or anything man. 

      Your friend,

      Craig 

       

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    • Posted

      Thanks Brent, just with me hitting quite a low at the moment with stuff just your amazing call outs for me really warm my heart and it means so much to me. I know you were so low and where Lob is at the moment too, we must all keep each other in our prayers right now. You are a true friend man.

      Craig

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    • Posted

      Hi Lob,

      I also have a deadline, either I make a major improvement in these coming three months or I am signing up for a CFS recovery program on January 1st. I have done A LOT of research and picked one that I really believe in, an online course that runs over several weeks and doesn't cost too much. But first I am going to try recover on my own by making ALL the changes I can think of to boost my immune system and give my body the best conditions to heal itself. These are: Cutting all sugar, gluten, dairy, caffeine and red meats, only organic, whole foods. Taking vitamin A, B, C, D, E and probiotics each day. Sleep 8 hour or more EVERY night, no physical activity what so ever and meditation/relaxing exercises at least 20 minutes a day. I have done this consistently for the last three weeks which is already longer than I have stuck to any kind of diet or resolution in my life. But this time I have no choice but to stick with it, I HAVE to do what I possibly can to recover from this. If I can't do it on my own then the program is next. If you want to join me in this recovery project just send me a message. There are SO many things you can do to aid yourself in recovery and I think we owe it to ourselves to try them all (and consistently and for a long enough time) before considering giving up. Don't you?

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    • Posted

      Lob just hoping and praying for you still man, just hang in there for today and only deal with the day that is here right now. You are going to get through this storm man. You are I still believe it. 

      Definitely some good ideas and suggestions from Isabelle there, grateful for such positive influences for all of us. Thanks Isabelle you are amazing!

      Craig

       

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  • Posted

    Wow Isabelle! I have had all of these symptoms minus the fever.....I can say that all of my symptoms are neurological. I had a positive IgM for CMV and EBV in March (I was working in West Africa) and then Dengue Fever in May (contracted either in Jamaica or West Africa - this virus can lead to neuro complications). I also got mycotoxin poisoning while in Jamaica where I was also working. My naturopath thinks the mold is my primary issue but I am not so sure. My ID doc also said that my IgMs are now negative for the viruses and doesn't think I have them active anymore. My acupuncturist, who I think is very good says that my central nervous system is inflamed (neuro-autoimmune response) and therefore I have burning patches of pain that are rooted in my CNS. This would also explain the shakiness and headaches and yes - facial and jaw pain (finally someone else with that horrendous symptom!!!)

    Doctors only seem to know so much but I can tell you that my acupuncturist has actually made the most sense out of all the people I've seen over the last 8 months (tropical disease, ID, family practitioner, neurologist, kinesiologist, 6+ ER docs, mouth pathologist, osteopath, naturopath...) Viruses and mycotoxins produce waste that needs to be detoxed from the system. I am on a very clean diet and am taking binders to take out the toxins (chlorella, bentonite clay, chlorella)...detoxing may be less important in your case. I am also taking Chinese herbs along with the acupuncture treatments (meant to purify the liver as it is overloaded). This practitioner does a form of neuro-acupuncture and is targeting my head and CNS. He also hooks me up to electrodes. It is expensive however I think I am seeing improvements by going twice weekly. The re-wiring of the screwed up limbic system is talked about in ME-CFS recovery. Acupuncture helps with this mechanism somehow. I think the blood-brain barrier may be breached in cases like ours. Some virus gets passed it and all hell breaks loose. The trick now is to bring down the inflammation and purify the body - bringing our systems and organs back into balance. 

    I hate to say it, we need to truly REST and RECOVER (which can be a long process).  Despite me being 48yrs old - like you, I am typically a high energy person. I was kick-boxing in December, now have been debilitated since March. I would like nothing more than to go back to work but am not there yet. For feeling like crap I am still doing quite a bit just to re-organize my life so that I can take 6 months truly off and dedicate every ounce of energy on recovery. I am looking at this as viral meningitis (which I think I had but was not diagnosed with). In your case, there may be some kind of chemical or fungal/mold exposure given many people around you are experiencing similar symptoms?...something to think about. 

    Hang in there - eat clean, rest and more rest. I would add some sort of limbic system retraining (meditation, yoga, acupuncture, if you can find someone good)......wishing us both a road to recovery that is not too long. 

    Take good care,

    Kiki x

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    • Posted

      Hi Kiki,

      It definitely sounds like we have the same thing going on as well as a similar recovery strategy! Inflammation of the CNS (or viral invasion of the CNS) is exactly what it feels like and what I have been telling my doctors since day one. Sore spine, neck pain, head pressure and cranial nerve issues etc... How could it not involve the CNS?

      I have kept my diet incredibly clean for the last three weeks, taken supplements and probiotics, started meditating daily and getting plenty of sleep and rest. I am planning on sticking with this plan until the end of the year and if I haven't seen any major improvement by new years I am joining a CFS/ME recovery program that aims to rewire the nervous system to heal the body.

      Side note: I am going to China in december (live in Scandinavia) and will try to buy something called Oxymatrine while I am there. Apparently it is a powerful antiviral found in a some chinese herb that an infectious disease doctor (Dr. John Chia) used to cure his son from ME/CFS. This doctor thinks that CFS/ME is caused by a virus that is hiding in the body's tissues and nervous system. I saw a really interesting interview with him on youtube and I thought it sounded like the most plausible theory I have heard yet. Trying all the other stuff first though but am open to everything and anything that has ever helped anyone!

      Let's keep each other updated on our progress!

      xx

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    • Posted

      Hi Isabelle,

      It is so good to connect with somebody who gets it. Yes, it does sound like we are on a similar healing path. I like the idea of saying that if things don't improve by the end of the year then join an ME/CFS recovery program. I have been looking into it as well. I can't imagine that staying like this. I find it so frustrating and strange that regular doctors don't talk about viral intrusion into the organs, tissues and CNS. I guess there is no drug that they can hand out so they don't bother.  I am going to show my acupuncturist the name of the herb that Dr. John Chia used for his son. I am intrigued. Maybe it's in my herbal concoction or maybe he can source it if it's not too rare. Toronto has a very large Chinese community.

      I couldn't help to smile about a couple things in your message....I am part Finnish (forgot to mention saunas are part of my healing protocol!)  and my ex-boyfriend is named Chia and lives in Helsinki (he is actually from Cameroon)....where are you in Scandinavia?....surely there is a sauna nearby that you should use!

      I would really like to stay in touch with you. Perhaps we can connect outside this forum if you are open to it. I live in Toronto. 

      Keep up the good work,

      We got this!

      Kiki x

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    • Posted

      Hi Kiki!

      I am sorry for the delayed response. I often find myself getting overly fixated on symptoms and on the possibilities of recovery when I read too much on the forums, then I just have to take a step back and not engage in it for a while. But of course I wanted to give you an update!

      Btw that's so funny that you mentioned the sauna! I am from Sweden and we actually have a sauna here in our apartment building that I have used regularly as a part of my recovery. I stopped about a month ago though. I really love it in the moment but I think it was a too big of a stressor on my body as I often felt a bit worse the day after. I have noticed that anything that "activates" my body in any way (exercise, excessive heat/cold, stress, sugar, hormone fluctuations during cycle etc..) leads to an increase in symptoms. Since I realized that I have steadily gotten better!

      Two weeks ago I actually joined that recovery program I mentioned in my last post. I figured why wait until January if I there is any possibility I could start my recovery now. It has already been way too long feeling like this. I am actually feeling really excited and hopeful about it. The techniques they teach and the theory behind it really make sense and I believe it is already making a difference for me. If this is the road to full recovery we shall see. I so hope it is! I will be sure to post a recovery update when I get there (when, not if)! 😉

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    • Posted

      Hi Isabelle,

      No worries about delayed response. I can relate and completely understand about the symptom obsession and online research that can render one a bit crazy! I just re-read your post from a couple of months ago where you outlined your health puzzle....as I said before, I really relate to what you have gone through. It sounds like you are a little ahead of me in the recovery process (I became sick overnight in late January 2018 and have been seriously unwell ever since). I would really like to know which online course you are doing. Is it 'ME/CFS unravelled'? I've listened to some of the recovery stories on that website and felt encouraged by some of them......yes, please post a recovery update when you are feeling like you again!....It's great to hear that you are seeing progress after all that you've put into recovering. I find it hard to see progress when I still have terrible symptoms, but I know I too must be on the healing path with all that I am doing.

      Take good care,

      Bye for now,

      Kiki x

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    • Posted

      Hey Kiki and Isabelle,

      I do empathise about finding the balance between wanting to read up on things to inform yourself and find things that can help with recovery and the awful cycle and phase of getting into reading people's scare and horror stories on google when that's the last thing you need or want. It's not easy I know, just remember that the vast vast majority of people get fully over mono and get well again and it is normal (unfortunately) to go through a bit of a struggle with it first and for things to take time - but I'm still believing that you are both going to make a full recovery and hoping the recovery programmes can help Isabelle and there can be some good stuff to share with everyone! Hope you have a great trip to China too and it can be something positive to look forward to and you feel well and strong at that time.

      Craig

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    • Posted

      Hi Kiki,

      Don't worry about not seeing progress quite yet. My first symptoms started in March 2017. Then I became really ill in October 2017 and stayed really ill until July 2018. During the summer I had more good days and a bit less severe symptoms but still crashed badly after any exertion. I wasn't until I stopped all physical activity (which was really only some walking) in September that I finally stopped crashing. So the turning point for me was 12 months after the onset of severe symptoms (about 19 months if you count the start of mild symptoms).

      I will send you private message about the program. (It might be against forum rules to mention specific programs etc. )

      xx

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