Medical Questions > Conditions and Diseases > Mononucleosis Forum

Long-lasting Mono Symptoms, Any Advice?? (Page 1)

I was a healthy 23 year old. I fell sick in december, and for two months had near constant headaches in the back of my head, and a vicious fatigue that felt like it was in my bones. Over time the headaches and fatigue are better, I also don't need as much sleep! All in all my body feels stronger.

It took the doc's 5 months to figure out I had mono. After almost 7 months of illness, I still experience severe and long lasting bouts of nausea. I am still not able to work, leaving the house can feel so overhwhelming and difficult, I am still fatigued but not as bad as before, my headaches are better, my body is stronger but still feels like i'm lacking in strength and vitality. From what I understand my doc seems to say that the virus is out of my body, but i'm still recovering from the bashing it gave my body. Should I expect to fully recover, I mean, there are times when I don't even remember what feeling ok is like. Improvement seems so negligable at times that I wonder if I will recover fully? Could this have developed into chronic fatigue(my doc tends to scoff at this). Anyone out there with similar experiences or advice???
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First Helper Somewhatrandom
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replied August 12th, 2006
I've had/am having very similar experiences. I got mono in january, 2004. It took a few months for the doctor to figure it out. I am now under the care of an endocrinologist, who says that sometimes symptoms/effects never go away or take many years to go away--it varies person to person.

You should strongly consider seeing an endocrinologist, if you have not already.
Message me back so I know if you have received this.

Alison
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Users who thank Somewhatrandom for this post: marymackmarymack 

replied March 30th, 2011
I will always be feeling like this );??!
its been 1 year already
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replied April 21st, 2008
Long lasting effects
I had mono in the fall of 1998. I know exactly what you are talking about with the hurting in your bones. I still remember that after all these years. I wouldn't have any energy, sore throats, etc. I would go to the doctor and they would give me a Z-pack that would make me feel better for another month. Each time I went they did the throat swab for mono and it would come back negative. This went on for 6 months. When I came home for Christmas break that year I went to my regular family sick again. This time she took 6 vials of blood and found out I had mono, said that I had probably had it since about June of that year. After this I finally got better to where I was sick all the time. Growing up I didn't get sick that much; since I had the mono I get sick all the time. The lymph nodes in my neck swell up at the least littlest thing. I catch every thing that is going around. Stress also bothers my body a lot more now. I have developed Crohn's, hypothyrodism, and asthma now as well. When I go to the doctor's with something it is hard for them to figure out what is going on. I jokingly say that I am a medical mystery but I personally believe that it is all related to the mono. My immune system is basically destroyed from the mono. I feel like if the doctor's would've been able to catch it earlier on that it wouldn't be so bad on me today. Also, I have now developed an allergy to the Z-pack and can no longer take it. I guess the doctor's overloaded my system with it back then. I still don't have as much energy as I think a 27 yr. old should. I have always wondered if there was others out there that were having the same long-lasting effects from the mono as me.
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replied March 30th, 2011
Your story
Dude did you ever get better? because your story sounds just like mine ):
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replied March 30th, 2011
Your story
Dude did you ever get better? because your story sounds just like mine ):
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replied April 6th, 2009
I feel the exact same way as the above post. I had mono in March 2003. It took the doctors weeks to figure out what was wrong with me. Ever since then, my immune system has been incredibly weak. I catch EVERYTHING, my lymph nodes swell...and I never feel 100% rested. I long to wake up and go through a day feeling completely awake and well rested. Will this ever go away?? It has been 6 years!
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Users who thank lad912 for this post: Kally24 

replied July 10th, 2009
Homeopathic treatment
Have u all tried homeopathic treatment? My wife found out 2 months ago and same thing it took conventional doctors some time to figure it out, it was actually my wife that suggested she do the glandular fever blood test... they said since its a virus they can't do much... but she's now doing a homeopapthic treatment to boost her immune system and fight the virus... she still gets tired but she must learn to take care of herself better... when she gets slightly better she immediately does too much and gets tired again... also consider reading the book You can Heal your Life by Louise Hay.
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replied July 10th, 2009
im 14 (almost 15) and i was diagnosed with mono a couple of weeks ago and it mostly went away but just recently (i think because my immune system is down) i have gotten some type of cold and some of the symtoms are back but mostly fatuige. I know what u mean by the feeling of your bones aching and just being touched hurts or feels uncomfortable. For me, i just took it easy, took everything that i could to stop the symtoms or slow them. One more thing, ever since i got mono, i lost my hunger in a way and got headaches every day after 1st period and i couldnt realy do anything about it untill school ended, i hope u get well soon. unless your better (its been three years).
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replied July 26th, 2009
My daughter recovered from her 8 months mono by taking a new anti-viral supplement called Gene-Eden.
it helped her with her fatigue and pain symptoms, she is like a new person today.
Good luck
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replied August 23rd, 2009
Still having mono- like symptoms years later.
Oh my gosh! I thought I was the only one! I feel the same way. I had mono twice: once when I was 13 (no, it wasn't from kissing), and once when I was 20 (still don't know how I got that). The first time was very different from the second. The first time, I was very ill, to the point where I was delirious and don't actually remember most of the experience. I was vomiting several times a day and couldn't move. The doctor diagnosed me and said there was not much i could do. I went to a chiropractor, who did work on my neck (took the 'crickets' out- I was a kid so she made it less scary saying that). Anyway, after that I felt better! I really did- she basically cured me- very strange but true. The second time around was different- I had more of the fatigue, swollen lymph nodes, nausea, HEADACHES, body aches, all that fun stuff. I didn't know I had it until a couple of months into it. I took 2 monospot tests the first one came out negative, a few weeks later I had another one that came out positive. I was taking summer courses at NYU Tisch school- the only way I made it through was taking high doses of ritalin (which I've been on for add/adhd for a while). So I finally "recovered" from the mono, but 4 years later I am still experiencing symptoms. I feel like it just comes back from time to time- like some days I'm fine but other's it is debilitating and I have no energy and actually CANNOT do the things I want/ need to do. My headaches are frequent, I often feel nauseous, tired, dizzy, feverish....just 'not right'. It is very frustrating. I have been to many doctors; regular physicians, naturepaths, acupuncturists, and chiropractors. They help, but it isn't permanent. I am convinced there has to be some sort of recurring syndrome. I have not been the same since the mono. I developed food allergies (Celiac disease), I am allergic/ sensitive to everything. I get unexplained rashes, I generally find it very hard to function. I have developed acid reflux, stomach ulcers, I am kinda depressed, I can't keep weight on, basically lost my appetite. I also have brought up possible chronic fatigue with my doc(s) and they look at me like I have 3 heads. CFS is the closest thing I have found online that matches my symptoms. I guess I don't have an answer for you (3 years later), but you aren't alone. I think there is something to this idea of recurrent mono or mono-like symptoms, or even just lasting effects of mono that doctors ignore or aren't aware of or label as somatic (all in your head). All I know is my body has not been the same since.
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Users who thank poulet60299 for this post: drumminator 

replied September 3rd, 2009
Mono
My son tested postive for mono in the summer of 2007 about the first of July. It took doctors about two months to figure out what was wrong. He had nausea, low grade fever, headache and really tired. They kept telling me it was the flu. As a result it took months for him to recover as his liver and spleen enlarged.
Well, he is 13 now and for the last month he has been experiencing stomach pain and nausea off and on. I never really thought about the fact he may have mono again. I thought once you had mono that was it. We have no family doc so I guess it is off to the outpatients for us......this site was very helpful
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replied September 4th, 2009
Experienced User
Hi Everyone.I am a 22 year old female. I have been experiencing some symptoms off and on for the past few weeks that are making me think Mono possibly, but I had Mono when i was a lot younger(I don't remember much about it. Just that I went to the doctor because on swollen glands in neck and throat, and my neck was very sore and stiff. They didn't know what the problem was then, so I was hospitalized, with a diagnosis three days later of it being Mono)and I know that it is apparently very rare to develop Mono more than once, so I'm not sure if what I'm feeling is that or not(even though I have developed the same symptoms quite a few times growing up ever since I first had mono, so I may have had it a few times actually if it's true you can get the symptoms more than once). For the past few weeks, my glands in my throat, under arms, around ear, and especially in the back of my neck have been swelling and getting a little sore off and on, but they go down for a while, then maybe like the next day or 2 days later, they swell back up again for a day or so. Just today, I noticed that the left side of the back of my neck is hard and a little swollen, and then my ears have been aching a little all day(they have been off an on for a few weeks too) and my whole neck is sore now and feels hard a somewhat swollen. I have also been experiencing cold-like symptoms for the past 3-4 weeks, but it never develops into a full cold, just really stuffy nose, off and on sore throat and flemm in my throat at times(feels like I have a head cold). The past couple of days I have felt really tired and out of it sort of too, but not so bad that I'm in bed all day or anything, just feel like I have to close my eyes and rest a little a lot of the time and my eyes are pretty heavy and tired feeling most of the time right now. I have also felt tiny twinges of pain in my lower abdominals at times too. I am hoping this is just a virus or my body fighting off an infection and not something like cancer maybe, that has been worrying me because I have also had a bump under the skin(not noticable unless felt for) at the back of my neck on the right side under the hairline for like 4 or 5 years now right where I think the lymph node is and it has always caused me discomfort and some sharp pains up into my head but I(and others) always just waved it away as stress or muscle tension or bad posture, but of course it is worse now that I am experiencing these other sypmtoms too and it's somewhat swollen around that area now. But my worry is that it is like lymphoma or something that's just beginning to spread or something, so I am hoping that my symptoms are closer to something like having Mono again instead of that. Anyone have any insight or ideas?
Sorry, I know this was really long, it's just been worrying me a lot lately and my fiance and I don't have enough money for tests if they happen to cost anything to have them done here in Alberta. I don't know how it all works. Any help here would be very much appreciated. Thank you!
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replied August 7th, 2011
Persistent lumps
Any bump/nodule that lasts over one month should be biopsied. You are right. I am a doctor, but I realize how most doctors don't listen --force the issue.
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replied August 7th, 2011
Persistent lumps
Any bump/nodule that lasts over one month should be biopsied. You are right. I am a doctor, but I realize how most doctors don't listen --force the issue. Sorry for your troubles, but I do think if has not changed in size, you probably don't have a serious issue, it's just a nuisance. All people need antioxidants to prevent and treat diseases. Try xango-- a fruit juice with 40 of them.
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replied December 5th, 2009
If anyone doesn't have alot of money and is worried about having mono ask the MD to do a CBC with differential and a Mono spot test, both of these require blood work and even without insurance should be less than $100. You can go to an out-patient clinic and might be cheaper. I have been diagnosed with mono for the second time 1st time=13 y.o. and 2nd time=25 y.o. I'm currently in nursing school. The first MD did only mono spot test-came back negative, 3 wks later did CBC with differntial and mono spot and surpirse, it was positive. Trust your gut and call around to places and price these tests and office visit if you think you might have mono for first time-or AGAIN. Best of luck!
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replied January 1st, 2010
I had mono for the first time when I was 17 in December 2008. My mono was so serious that my throat was so swollen I could not eat or drink. I ended up being admitted into the hospital for a week and with severe medications my swelling went down. But even to this day I still get sick to my stomach. I catch every little cold and I take vitamins every day, I do everything possible to boost my immune system by eating right and not staying out late. This new lifestyle has cost me friendships and grades in school. I feel as if I'm starting to feel depressed from all of this because it seems there is no hope. It's as if my life has completely changed and from
now on I will always be sick. Thanks to mono I have developed allergies, anemia, post nasal drip, dark circles under my eyes from chronic fatigue. Is there any hope that this will ever go away or am I gunna be like this the rest of my life?
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replied February 26th, 2010
mono
I've had the same experiences. Ever since I had mono, I get sick with every little thing, and a lot of things that doctor's can't explain. I've even developed an autoimmune disorder.
One thing I would like to say really quickly is that I'm a medical lab technician, and while the mono-spot test is cheap, it's also not completely accurate. About 10% of people will test positive when they really aren't. If you want to be sure, ask for the EBV titer (it measures the amount of the epstein-barr virus that's currently in your system). This will tell you if the virus is present, and how active it currently is.
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replied March 7th, 2010
VALTREX help my mono symtoms
I was dignosed mono positive and I had very painful sore throat. Lucky I found a very experienced doctor and he prescribed me VALTREX medicine and it is realy helpful. My sore throat went away the next day. I will do more test later. Anyway, hope this info will help someone here.
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replied March 10th, 2010
symptoms 9 months later
I had mono last summer. It started with massive fatigue through May and June and developed into the feverish, nauseous, epically-tiring, abdominal-pain-making loveliness that is Mono. I never had any of the strep symptoms so, again, it took the Drs 2 months (after multiple blood tests per week, ultrasounds, etc), to decide that what I had was, in fact, mono. My mono attacked my liver and this was what tipped my (second) Dr off because the blood tests showed that I had massive enzyme counts in my liver (apparently an advanced state of mono is hepatitis). By this point the worst of it was over so the diagnosis wasn't very helpful.
After the mono I developed massive canker-sore outbreaks in my mouth. The sores were persistent and continuous: at one point I remember counting 10 different raging sores. I went back to the Dr because it was affecting my eating and talking and she wasn't helpful in the least. My mother suggested it might have something to do with the mono (she reminded me that when my brother had mono a few years back he broke out in shingles afterwards). I still get canker sores frequently.

Since my mono I've not felt the same at all. I'm 23 and have never been seriously sick in my life (before mono). I've prided myself in my general healthiness. Before mono I had never felt nausea: I didn't even know how to imagine the feeling when I heard people talking about being nauseous. Ever since having mono nausea is a persistent part of my life. The same symptoms I felt during mono pop up randomly from day to day: pain in my abdomen, nausea, general achyness, headaches, swollen lymph nodes, and chronic fatigue. Some days all I feel like doing is bursting into tears.
I've just begun thinking today that perhaps this all links back to my mono: all the symptoms are exactly the same that I experienced this summer.
I wonder, though, if any of you with long-term symptoms are worried that there is some bigger, more sinister problem going on? Evidently the Drs are not very good (or perhaps just not very concerned) with properly diagnosing mono: do you ever wonder if we never had mono in the first place and something else is wrong?

I'm so sick of feeling like this. I just want to be normal again.
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replied March 30th, 2011
Hey ecorrie,

Im a 17 year old male.
I swear.. Reading your story sounded like watching a movie of my life.
I began going out with some girl at 16, and i was healthy as an ox. But, one day i began getting these canker sores in my mouth and low grade fevers. I thought it was just a mild illness that would fade away in no time.
However, during last summer i was diagnosed with mono. I had fevers up to 108 i literally thought i was dying.. I contantly looked up information online, while i layed in bed in such pain. It has been 11 month exactly since i had it. And i never have felt the same since when i was 16 ;(..
I thought i was somthing else so i went to an STD clinic and did a test for all types of things i thought i had such as HIV, Ghonnarea, Syphilis, Chalmidia. However it all came back negative. Im so stressed and never got it off my mind. I feel so lazy, sleepy and sick all the time. I need your help please guide me on what steps i should take. Im literally killing my self thinking about whats wrong with me. I haven't gone a single day without thinking about it and having depression): I ask Again PLEASE, no doctor ever cared to helped me the just recommend pain killers. It only works for a little.
Thank you
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replied May 22nd, 2011
this was great to hear your story. I am 19 now, in 2011, and i got mono when i was 18, last october 2010. Ever since i have never felt well. I haven't been able to handle the same amount of workload or stress that i used to and started getting extremely depressed and having panic attacks. I looked online as to what could be wrong with me and i did the EXACT same thing with all the STD testing. I had nothing of course, and I am convinced it is still the mono having an effect. How have u been since you wrote this?? Have you slowly recovered or even been back to your normal self??
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replied August 14th, 2011
Hey,
great to hear the story of both of you. Ecorrie, exactly the same happened to me. I was the healthiest person in school, then had a girl, got mono. Tested for STDs, was extremely stressed during that time...but everything was negative. Tested also for many other things at a nuiversity hospital. Now, 5.5 months later, I have headaches, muscle pain, a mild sore throat and I doubt it ever will go completely. It would be nice to hear from both of you.
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replied October 24th, 2013
Thank you so much for your post! I'm 26 and I'm having the same exact issues!!!

This started second to last week of June this yeah and it's now the second to last week of October. Luckily, because it settled in my liver, I was diagnosed almost immediately with mono hepatitis. That doctor was a saint, but he wasn't my primary, just in urgent care.

Some of the symptoms have subsided at least on an off, but the ones that are still causing problems are pain in my abdomen, headaches, general achiness, massive back and neck pain and chronic fatigue.

AND I started getting canker sores! Not a lot, but enough where I think to myself "huh, that's not normal." My doctor chocked it up to stress and lack of exercising, but I started exercising a little while ago and I still need to take the Tramadol which I'm still on. She said I should wean myself off so I chopped them in half, and I took a half today. Not working for me at all.

I even switched out for a new bed and went to the chiropractor. All mildly helped, but without the support of my primary, I'm at my wits end. Whatever you have, I've got as well! I hope it's just mono, but I hope it clears up soon for the both of us.
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replied March 10th, 2010
Experienced User
Ecorrie, PLEASE DONT WORRY. Mono symptoms can sometimes take a year to 1 1/2 to resolve. What's happening now is exactly that, your symptoms are resolving not evolving. This is why your experiencing some of the same symptoms you've had since you first sick, only to a lesser extent.
The worst thing you can do is worry about how long your symptoms will last. I know it sucks, but the best thing to do is accept your disabled for awhile. Being disabled can be fun, you always have a good excuse to be lazy and watch movies. I've had mono for awhile too so I know how you feel. Hang in there it will be over soon enough.
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replied March 17th, 2013
This seems to be the big question- you say it can last a year to year and a half, whereas others on this forum indicate that they have been impacted for many years. So can you elaborate on the basis for the year and half time frame?

For me personally, I got mono about a year and a half ago, and ended up having chronic tonsillitis that led to a tonsillectomy. Following that I felt ok for a couple months, but then relapsed into pronounced mono symptoms again, which is where I am now. My take is that my ability to fight off the virus was compromised by the tonsillitis, so now that they're gone I expect to gradually get better.

But I'm concerned reading these posts- could this last for the rest of my life?
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replied March 13th, 2010
Yeah, Sporque!
Ecorrie, I'm gonna second what Sporque said...and try to believe it myself. I'm 22 (almost 23) at almost four months into EBV mono, and I'm serious, I have the EXACT same things pop up from day to day ....some days I will have swollen lymph nodes that I never had, even in the beginning of the illness! The general achy feeling is practically constant. In the beginning I got a lot of canker sores too...have you tried taking L-Lysine? That seemed to clear it up for me. Malaise,sore muscles, occasional nausea, fatigue, insomnia... I also constantly wonder if I have something else, and get way too caught up in reading about obscure syndromes (CFS, anyone?). I have noticed that stress/anxiety makes it MUCH worse for me, even more so than physical stress. I can walk 5-6 miles and be fine, but if I sit here and stress about how this may last forever, I feel terrible and all my symptoms flare. I'm writing this for myself as much as you!
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replied April 21st, 2010
Mono
Well everyone, as they say in the USMC, welcome to the suck,lol. I''ve had the same expeirence you''ve all had to, I was training for special forces at the time, I was running three miles with a forty pound vest several times a week, swimming three miles a day on top of lifting weights and pushups and pullups. I was in great shape, special forces shape,lol. Then one day I got mono, I haven''t been the same for a little over two years now, I''ve given up on the special forces for now. Ive seen several doctors they told me one day I will be normal again. When I first got the virus I couldnt even get out of bed, If I tried to walk I felt like the ceiling was going to come down on me, this lasted for about a year, until finally I started being able to get more rest, then I could at least function some what okay. Now, after like I said two years, I am starting to feel better, but I dont feel like the same guy, as a matter of fact, a guy that use to see me train, went on talking about how this one guy use to show up at the pool and how great shape he was in, the guy didnt know it was me. He was the life guard he use to see me there everyday. And he didnt recognize me after the mono,lol. But I started taking one a day mens vitamins and B12 vitamins, and I have to say I think the B12 worked really well, you can buy them at publix or any grocery store that sells vitamins, I even got a B12 shot once from the doctor, but I did notice that the B12 helps, also forcing yourself, at my doctors advice, to get atleast 10 to 15 minutes of exercise three times a week after the virus has settled will definetly help you feel better, at the start I vomitted a few times, but I would take a couple of days off and force myself back into it, now Im running again with my vest and doing my pushups,pullups and lifting, I lay off the swimming for now. I ran the other day with my vest for a mile and a half, but Im taking it easy for a little bit till I get more stored energy, but I sleep at least eight to nine hours a day. Thats a must. One day with proper exercise and rest we will all feel better, also make sure to give your immune system those vitamins it needs to function. B12 is Great, it encourages healthy white blood cells, which the mono layed a beating on, lol!
Good luck and remember it doesnt hurt to pray either, and maybe there is something else you can focus on in your life, for me I focus more on community and family now, not so much the military anymore, I like to work with kids and the elderly, I would like to be a good rolemodel one day,lol, find the postive and stick to it.
I may never get to jump out of helicopters or save some one from enemy fire, but I can still live and be a postive influence, a sysmbol of some one who never gives up, not many know what its like to lose part of yourself and keep going, not like us Mono People, lol, Good luck and pray.
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replied April 21st, 2010
One more thing, I use to wake up everyday and check my glands, I dont do it anymore, because it like a few others said, thinking about it just stresses me out and makes it worse, with my new postive attitude, hope and prayer, I feel better each day, but the minute I start to think about it, is the minute I get worse,lol. Also I just turned 23 as well, so im a youngin to.
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replied April 27th, 2010
Had mono when I was 16 and am currently 31 with extreme fatigue. Doctor thinks it is because of the mono and told me that you never get rid of the virus and things like a cold, stress and even a heavy period could bring the symptoms back. She said that the fatigue will probably last a few weeks or so and then get better but that I will likely have issues with this for the rest of my life. Haven''t felt energized in a REALLY long time!!
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