Help! HFMD for three months and counting!

Children's health
1

Hi everyone,

I am literally at wits end! I am begging for anyones help I would appreciate it so much!!

In september (2015) I contracted HFMD, starting with large (r than normal) red blisters with white in the middle, on my hands and feet, with dehydration, mild temperature, tiredness, a lot of itching, and a bit of a sore throat, but hardly an issue around my mouth just one tiny bump and one tiny "leaking" lip area.

Three doctors saw me and all said, yep its hfmd it'll go on its on time don't worry! 10 days maximum.

Well! 

Here I am almost three months later with reocurring rash (and lip leaking) which over time the size of the individual bumps have lessened, however, I can rest and be good to my body for a few days, and then if I have to wake up early for work or go out with friends, it'll start to creep back. (but noting that never has the rash completely dissapeared)

as the rash goes back then i can start to get those flu symptoms but minimally. I swear its acting like herpes??? as if its chronic! :'(

I have to start my education in a month and I feel incredibly alone, I saw an additional two doctors that have never seen a case like this lasting so long and nobody knows what to do. 

Since i've got access to scholarly articles I read up as much as I could and from the limited info that was there, I decided to talk to my doctor to give me Acyclovine , which is usually used for herpes simplex, shingles etc, and although it is known to not have the same effect for coxsackie, a study and a case study indicate that it may help.

But really, this has turned into an absolute nightmare and if ANYONE else has experienced anything similar I would absolutely love to hear what happened to you and what you did, or if you have any advice.

Thank you so much

 

2

Hi Sandra. I developed HFM from one of my children who became exposed. Child#1 suffered longer than Child #2, whom I caught quicker and was able to knock it out. I caught it also, and here is a run-down of my symptoms: Day 1 loss of appetite and general feeling of malaise. Day 2: Moderate fever with mild sore throat . These lasted for a day. The worst part for me is the lingering fatigue that comes and goes, and I am currently on day 5 although it is getting progressively better and I am feeling stronger.

  I've studied Holistic Medicine for years and am currently working toward a degree in Natural Health. These are what I reccommend:

Probiotics ( preferably enteric- coated). I've been using 25 billion CFU 2X a day ( I normally take it once a day). Gut health is so important, since approximately 90% of your health lies there. 

Omega 3 (fish oil).

Sunlight on bare skin for 15 minutes a day to boost vitamin D.

To target this virus specifically, what I've found helpful is: Oregeno oil, 1 capsule 3X a day with food). This is a strong natural antiviral.

Lysine, 2x a day. Lysine is an amino acid helpful in the treatment of herpes. Since this virus is related, because it is a coxsackie virus, I am applying some of the same treatment you would use for any of the herpes simplexes viruses. Also Lemonbalm is very helpful with this type of virus- I take mine in tea form a couple times a day. I grow it in my garden but it can be found online and in Healthfood stores. As for the blisters, Lemonbalm tea is beneficial when brewed strong and applied with a soft cloth or sprayed on. Another good thing to use on these is coconut oil, which is antiviral and also will moisturize the skin and encourage healing where the lesions are. You can take it orally as well, 2-3 Tbs a day.

   Adequate sleep and hydration are so important to healing! To encourage relaxation a cheap help is Epsom salt baths. 1 cup per bath 3-4 times a week, rotating days. Also magnesium oil is great to use everyday in transdermal form, both as an aid for relaxation and to help boost your immunity. Most people are already deficient, and your body uses even more when faced with physical or mental trials. 

   Keeping your diet super-clean will help as much as medicine; eliminating sugar as much as possible ( 1 tsp drops immunity to around 50% for 3 hours!), processed food,

and caffeine. Incorporating alot of leafy greens and other fresh fruits and vegetables.

  Also keep in mind that if you have any underlying autoimmune problems this will

setback the healing process in varying degrees. 

 Hope this will be of some help to you!

 

3

Hi Sandra, I have had a similar experience.  I work with preschoolers, and got HFMD in April. Now 7 months later I still have it.  I am on medical leave from work because i just couldn't handle the exhaustion of working while being sick and because i wasn't getting better. I at first didn't realize that it was the HFMD reoccuring.  I just noticed that 2 of the original mouth sores never went away, and that i had a lot of stomach problems with alternating diarrhea and constipation, as well as nausea, terrible gas, stomach pain and stomach churning.  I never got very much of the skin rash but have had isolated bumps on various parts of my body- not just my hands and feet.  I have noticed that it seems to run a predictable course for 7-10 days like they say with sore throat, exhaustion, and nausea in the beginning, then the mouth sores, then the body sores and for me all of the stomach symptoms.  Then there is usually a day of feeling well, before i get hit with another whole round of it.  I am just wondering, do you still have it and have you found any answers? I have tried some natural herbs etc but nothing seems to help.  I want to try the suggestions mentioned below.  Thank you!! 

4

Right there with you! I am now on day 38 with hand-foot-and-mouth disease. I'm 57 years old and have seen the doctor several times. It even subsided for about 5 days but came back again with a fury! And I'm at a loss as well. My doc is doing a biopsy o Tuesday to confirm that it is nothing else

5

Melody, you have pretty much nailed my symptoms to a T minus the stomach distress. I'm well over a month into this viral infection and it has taken over my life! My boss won't let me come back to work while I still have any blisters and as you know they come constantly! I've had one stretch of 5 days since November 7th where I thought the symptoms were gone. The fatigue is the hardest part and flu-like symptoms. Please let me know if you find anything new. My doctor has requested a biopsy (this coming Tuesday) to rule out anything else even though I've seen her several times as well as an urgent care doc a d they feel strongly its HFMD.This is just horrible!

6

Same here. Mine started October 31st. I have a rash all over my legs, back, arms, pelvic area and a few on my butt. It’s november 11th and I still have the rash! Legs are the worst. It looks like i have chicken pox. They don’t itch or anything anymore but they’re very dry and flaky looking and red.  I don’t feel sick at all anymore. Some days I’m more tired than others. This sucks. I never went to the doctor. My 5 and 7 year old boys had it. Very mild and theirs was gone within 5 days. I just figured I caught what they had. Now I’m wondering if it could be something different....

7

Hello

I got hmfd about 3 years ago.. over mostly just my hands and feet. I had bad fever,extreme fatigue, upset stomache and dehydration. It lasted about 5 days and was cleared up.. or I thought it was. I think I now have reoccurring hmfd. Whenever I am stressed or my immune system is down I break out in a mini  blisters all over my hands and have extreme fatigue.   I am also in the school system as a teacher.. I don’t know if I contract the virrus new every time? Or if it just stays with my body and comes up when I am stressed/ immune system is down? 

8

I writing on behalf of my 25 year old son.  He is currently on my couch feeling awful. He first had symptoms in January (2018). He has sores on his hands, in his mouth and extremely red and swollen eyes ( similar to pink eye).  He went to urgent care after the initial outbreak was given prednisone which made things worse, then he was treated for pink eye.  Eventually things cleared up.  Since then he has had several outbreaks but none as severe as now.  He thinks he gets the outbreaks when he is really tired and his immune system is a little down due to lack of sleep, etc.  He has currently just returned from a trip to Japan for work and has his worst case of this yet.  He has all of the same symptoms as his initial outbreak with sores on his feet now too.  The effect on his eyes seems to be an unusual symptom unique to him. He went to Urgent care again yesterday but has received no new information.  We are trying to get him in to see an infectious disease specialist. This is going on five months now. Has anyone gotten any relief from this? I’m wondering if any of you have experienced any degree of recovery and if so, what helped you?  

9

Hi Diana, I'm 56 years old and was diagnosed with coxsackie A & B, all strains except one, with titers at 1600. I never presented with a rash, only extreme abdominal pain (morphine given) chills, joint pain, UTI etc. Not one professional including a week in the hospital could figure out what was wrong. After several visits the hospital I went to see an infectious disease doctor. I asked to have the test for viruses, coxsackie in particular, because I had it twenty years prior, and was grabbing at straws. I was right! The Doctor said, I could be sick for a year or more, and yes could have a relapse. I have been feeling good for three months and the past few days not so much, it's back. There is zero you can do but rest and take Tylenol like meds. Hope he is feeling better soon.

10

This is a follow-up to my initial post about my son.  He has now been diagnosed with Erythema Multiforme.  It is a nasty disease.  In his case, he has a rash mostly confined to the palms of his hands and his mouth with sores that make eating and drinking very difficult.  His eyes are also affected - extremely red and swollen with discharge. EM is known to recur in some people.  Triggers are often thought to be herpes simplex, or mucosaplasma pneumonia but this is not totally conclusive. In it’s worst forms, EM can be deadly.  We thought he had HFMD in the beginning because of his symptoms but he tested negative for the virus.  I hope this is helpful to someone.  

11

I've had HFMD for three months now and am at my wit's end.  My symptoms are that  it starts with being really tired and sometimes my stomach acts up.  Then the roof of my mouth starts to feel strange, almost like it is a little numb and has a film over it.  My mouth gets very dry and if I don't keep drinking water my tongue sticks to the bottom of my mouth.  My throat gets sore and scratchy.  I develop small dots on the roof of my mouth, towards the back then lesions develop.  Sometimes the corners of my mouth crack and bleed.  My tongue also hurts and I get bumps on my tongue toward the back of my mouth.  I have no lesions on my legs and have only had two on my hands, one of which looked like chicken pox.  Like others the worst part for me is the flu-like symptoms, mostly the fatigue.  No matter how much I sleep, I always feel major fatigue. I've been to the doctor and have had several tests none of which were indicative of anything.  I get better and I think I'm over it then it comes back.   I am totally miserable and starting to think this may never go away.

12

They can test you for a million things, but if you do t have the specific test for coxsackie viruses you will never know. Your symptoms are typical for coxsackie virus A. Hope you feel better.

13

Hi  Leslie. I just recently got HFMD, I went to the doctor last week and he said that’s what it was. The 10 days have gone by, and I just looked in the mirror to find another sore on my throat after my other two went away about 3-4 days ago. Should I be worried??? My throat just randomly started hurting so I looked at it with a flashlight and that’s when I saw it. What do I do? 

14

I'm sorry to hear you are going through this.  I have learned from my own experience that while the norm is 7 to 14 days for a bout of HFMD that is always not the case.   It is very frustrating to have multiple occurrences.  My experience is that there is nothing I can do but manage the symptoms.  For me Aleve helps with the pain of the sores.  It has also been suggested  to me that Mylanta provides a good coating and my doctor also said the pharmacist can make a concoction of Mylanta and Benadryl which can also help the sores.  The worst part of it for me is the virus symptoms -- major fatigue, body aches and sometimes a low grade fever.   This always lasts at least a week and the fatigue is terrible.  The best thing I can suggest is get as much rest and sleep as you can and try to manage your symptoms.  Also, try not to freak out.  I really struggle with not getting stressed out about this as about every 3 weeks I have an outbreak (since the beginning of March) and I feel like this will never end.  So try to relax if it is taking it's time going away or if you have a reoccurence.  I know it is hard but I really think stress is a big factor in my recurring outbreaks so I have tried to keep up with my regular yoga classes when I'm feeling OK.  Hope this has helped you --

15

I’ve got what I think is persistent HFMD.

Caught off 3 year old son.  

I’m in Australia - initial outbreak June 2015.

Initial presentation 2 doctors suggested HFMD.  Pathology for blister swabs returned A16.

3 years later still outbreaks, seems to be when I get run down - late nights, early starts.

Red spots on fingers, tender finger tips, especially thumbs.  The skin on the tips feels course, it’s like the virus kills the skin cells.  A week later some peeling.  Heels become red and swollen and painful to walk on, then skin shedding.

Stomach often feels bloated with a sort of burning sensation.

Have had chest pain at times also - cardiologist investigated nothing - but I’m not surprised if the virus is getting into the heart muscle?

Varying degrees of reoccurring outbreaks.

Frequency was about 3 weeks, but st times 3 months has passed.  Random.

Stress, and lack of sleep seems to trigger.   I also find I don’t sleep well, I don’t feel rested, I don’t seem to get the good REM sleep I once got.

I’ve visited, some of the best people in Sydney Australia - demonologist, microbiologist research sciencest doctor and a immunologist.  No one knows.  Lots of testing.

I’m 37 year old male.  I eat well.  Nothing like this effected me till the contraction of this virus.

Now waiting on blood test to see if antibodies should up on EV71, A16 and any other subgroups they can find to positively correlate a recent outbreak with antibodies in blood - my demands from doctor not their initiative.  I just want to know for certain which virus.

As to treatment i don’t believe any antivirual drug exists.

Why a healthy adult male of 37 would not be able to process this out of body like 98 percent of population I don’t know.

I do wonder if these centres around the world playing around with viruses manage to make strains that are released into the population by accident ( or not).  Big pharma and USA DOD Fort Detrick - what have you been up too ?

16

Hi Jack,

Thank you for your post.   Can you give an update when you get your test results?  Mine also occurs every 3 weeks and I'm looking for anything I can find to test for or for any explanation as to why this keeps happening.  Thank you, Leslie

17

Yes will post on results.  They are still pending.   Leslie are your symptoms similar to mine ?

18

Hi Jack,

My sores have been limited to my mouth and hands.  I rarely get them on my hands and it's mostly confined to my mouth.  The sores always come back in the same place as well.  I take Aleve for them and the worst part for me are the virus symptoms of major fatigue and body aches.  I start with just feeling really off with no appetite, then I get the major fatigue with the sores, then after 3 or 4 days I start to get a little more energy and the sores hurt a little less but  they take at least another week to go away.  It's a long process, then I have maybe 3-5 good days and it starts all over again.  I've had no long break in between.  Mine I believe is also stress related and maybe from being tired but I eat really well, exercise, and usually get enough sleep so I'm not sure why my body isn't recovering from this.  It's been very difficult and hard to plan things because I never know how I'm going to feel.  I've had a bunch of bloodwork which all turned out fine and my symptoms are so classic that I don't think it is anything else but this but I haven't investigated  much further beyond this.  I am always interested though to hear other experiences and thank you for posting what you did.  I look forward to hearing if anything else was discovered for you.

19

Copy all Leslie,

Yes it’s very frustrating to have a re-occurring problem and not be able to fix it.

Results back for blood test - negative.

As ‘enterovirus foundation states - ‘After the acute phase of an infection, enteroviruses can disappear from the blood and cerebrospinal fluid completely, but can remain in organs and other tissues. This makes it difficult to diagnose enterovirus infections without a biopsy, and even then, the tests are limited.’

Right now I’ve been feeling unwell and can’t walk in one swollen heel.  Finger tips bit tender, sleep has been bit ordinary and have had some chest pain last few days ( it’s like the virus gets into my heart for a few days.  Have had many cardiac tests in past  and all ok ) 

Like you say it’s hard to know a tigger if at all.  I eat ok, exercise ( when my feet don’t prohibit it ).  Maybe stress precedes it?  Stress is often a latent thing.

Not sure what to do.   

Another thing, I do seem to be bloated / swollen in stomach with each outbreak.  Maybe the virus lives in digestive tract and multiples largely  in outbreaks causing this.

I don’t know I’m at a dead end. 

20

Hello all,

I am sorry to hear about your experiences.

I was wondering if anyone received a further diagnosis? Or is feeling (permanently) better?

I had HF&M in April and have had the symptoms on a recurring basis since then - at varying intervals - usually when tired/too busy (although I am consciously trying to do the minimum - difficult with a toddler and work)

I recently had blood work done but there was no sign of infection (although there are thousands of viruses of course). My GP is concluding I have post viral fatigue syndrome - that could well be the case- but I find it strange to be getting symptoms in a very consistent cyclical way - itchy hands, headache/tiredness then the sore throat and stomach upset. I no longer get the bumps on my hand so I am hoping it is gradually improving.

What type of specialist has been most helpful to you? I am thinking of getting a second opinion.

Any advice would be helpful.

Thanks

Jac