Help! HFMD for three months and counting!
Posted , 21 users are following.
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
1 like, 40 replies
russ42482 sandra43030
Posted
Caught HFMD from 1 2 hour visit with grandson - days later had HMFD 9 days later I had what felt like 100 mosquito bites on each fott lower legs. Grandson went to Dr. 10 days cleared. I wasn't sure what I had only on feet no bumps, then hands with bumps. Had antibiotic on hand slightly improved. Then returned flaring at feet.
You can't tough this HFMD out, I'm saying this 7 weeks later. Dr. gave me antiviral called Acyclovir 400 mg 3x daily for 10 days, plus Amoxicillin 500 mg 2x daily because itching means underlying infection - redness. 2 days in right now not much has changed - still bothersome. I hope this helps some one else very soon !
And , Yes, grand kid's fingernail also grow over strangely in 8 weeks.
jack60109 russ42482
Posted
Have big phara and DOD been playing around with these viruses and released a mutated virus or something.
Maybe they release it and once millions infected an antiviral can be developed at billion dollar profit. I’m still getting reoccurring HDMD symptoms at random frequency and severity. Inflation spots on fingers and feet.
Best of luck with hopeful recovery.
russ42482 jack60109
Posted
Do not use alternative health store items some can triple the effects of your prescribed meds causing an allergic reaction..
Jack when you flare up Ice the feet and weave a hand towel between all toes and overlay the towel, for hands tap water immersed in a bucket 20 minutes each as needed.
HFMD effects lasts weeks not 3-5 days on kids as reported also.
russ42482
Posted
Update bumps and rash begins 3-4 days after taking Acyclovir HFMD turned to allergic reaction and worsened by 400% due to the Antiviral med that has no good effect. Edema next hand, arms and feet
Result, can't bend arms or fingers from swelling; to ER given allergy shots and 20 mg prednisone to insure edema doesn't effect lungs during recovery.
Lingering HFMD in some what sedimentary persons may have converted with rash,swelling and pain at night into a severe allergy - This is my history - it may be yours too. 48 hours later All has stopped, rash, edema still clearing on left foot. I can sleep finally. 350 blisters flat and drying out.
End of suffering.
Last Footnote: When your toes are rashed and itchy your liver is under strain and attack; see LV channel Accupoints these points give you more clues for any illness.
allasia40019 sandra43030
Posted
emma52323 sandra43030
Posted
My 10-year-old daughter contracted hand, foot, and mouth in early January this year, and it lasted for 13 weeks. She first had a fever and intense headache and stomach pain, and a few days later the blisters came up on her hands and feet. Her mouth was not much affected, although she did get blisters on her face and hands--they went away fairly quickly, although the rash on her hands and feet recurred over the 13 weeks. She had intensely burning hands and feet--we put lavender and avocado oils on them and rested them on bags of peas. She returned to school after a week or so and would go to school feeling ok, but call at noon complaining of dizziness and headache/nausea/stomach ache. She had some chest pains, but an x-ray showed no abnormailties. Her stool and blood tests were normal--although they did not test for HFM. One day after 13 weeks, she woke up symptom free. Two weeks ago (September) her symptoms returned with even worse headache this time. She has been going to school on and off, but we are afraid that the symptoms will last as long as the first bout and that this will be a recurring disease. The doctor said the first time that she just has to ride it out, but we are feeling desperate as it's incredibly painful and disrupting.
russ42482 emma52323
Posted
Go get checked out for the LIKELY lingering allergic reaction - get the shot. Don't go homeopathic on a kid she needs real treatment - Experimenting only compounds the allergic reaction.
emma52323 russ42482
Posted
leslied15 russ42482
Posted
Russ, I know you mentioned an allergic reaction to Emma - you think she had an allergic reaction to what? She didn't mention that she was taking medicine. Also you said for her to get the shot -- shot for what? I'm confused and wanted to know if you could clarify.
russ42482 emma52323
Posted
If you read above, My immune system over reacted to what was left of HFMD and created a lingering allergic response. After the ER last Tuesday that very day the pain, etc was gone.
Today 7 days later all is healing well.
Please do not substitute my experience or any other comments read here for a real Drs advise.
This ends my chain of any further response.
Good Luck, Be Well !
emma52323 sandra43030
Posted
Hi Everyone, I would also be very interested to hear people's follow-up experiences. My daughter's cyclical hand foot and mouth got worse with fewer good days in between the bouts. Her most difficult symptom to bear is the intense headache that does not respond to any drugs. She has the stomach pain, the pain just below the sternum, and the rash on hands and feet with swelling and burning. Did anyone find a treatment that worked and did anyone's symptoms just go away eventually? I would love to know. My daughter's doctors still disagree on her diagnosis, with the dermatologist diagnosing dishydrotic excema (her hands sweat profusely when she has a bout), and the neurologist diagnosing somatic symptom disorder. The infectious diseases doctor has referred her to a rheumatologist, as he believes the symptoms are not viral. I disagree, as she never had these symptoms before the onset of what was pretty clearly hand, foot, and mouth disease. We are seeing a new pediatrician next week. Thank you!
leslied15 emma52323
Posted
Hi Emma, I'm sorry to hear what is happening with your daughter. I'm going on 14 months of what was diagnosed as HFMD. Symptoms are headache, mouth sores, hand sores, excessive thirst and major, major fatigue. Would only have 3-5 day break between symptoms. I've been to four doctors, had tons of tests with no clear results. Two of my doctors have also indicated that they think that after the 1st it turned into something else as I haven't given it to anyone since my first episode (gave it to my best friend)! I also believe mine is viral as well. My last appointment was with an Infectious Disease doctor at Yale. The only thing that has helped me was changing my diet which I didn't do until January when I went to a 3 day workshop on strengthening my immune system. I cut out sugar, flour and dairy. The size of my sores dramatically decreased. The Yale doctor wants me to get a biopsy but the sores now because of the change in diet haven't been big enough (no complaints). Before this they would cover half of the roof of my mouth. I still have the rest of the symptoms (except only have one hand sore - really looks like a chicken pox when it pops up) but I recently started a medication called Nuvigil which is a stimulant that they give to people with narcolepsy which basically puts a layer over the symptoms so that I can function because I was barely functioning because of the fatigue. It makes me feel less tired and took away my brain fog. I have no break between symptoms now -- it's all of the time but between the medication and the diet change it's tolerable. I would someday like to find out what I have and of course my big hope is that it will eventually work it's way out of my system.Keep me posted on how things progress with your daughter and if I learn anything else I will let you know as well.
emma52323 leslied15
Posted
Oh my gosh, Leslie. That sounds so difficult. Thank you so much for responding--it's really helpful to know that we are not crazy thinking this is still hand, foot and mouth. It seems a biopsy is the only way to find out definitively whether it's HFMD or not, or perhaps a lumber puncture, which we have not had yet. Whenever there is a large enough blister, it seems to go before we have a chance to have it tested. She is not overly tired, but has been off school almost five weeks with the headache, stomach, chest and hand/foot pain (no mouth blisters). She also never gave it to anyone in the family, which we found very strange. Both she and her brother had had ordinary HFMD two and a half years ago (mouth blisters, but not burning hands and feet). We will definitely try the diet change--thank you for that. Have you tried the natural supplement Equilibrant, made by Dr Chia for enterovirus sufferers? He believes most Chronic Fatigue is caused by HFM and other enteroviruses and used to put his patients on antivirals till he formulated a natural product. We bought some, but have not tried it yet as it's not formulated for children. Might be something to try.
Good luck with your symptoms and I will keep you posted.
russ42482 sandra43030
Posted
In the end lingering HFMD symptoms required a 2nd allergy type shot and was said to be contact dermatitis - So watch those lotions and home remedies. Taking an antacid pill helps constrict skin redness - per Dr, An egg a day and doubled vitamin D helped, over many weeks. Another weird thing taking benadryl for months can cause you vision problems, as benadryl dry's your mouth commonly, it also dry's up fluid to your eyes and retinas !
Hope this extra info helps someone else'.
emma52323 russ42482
Posted
Thank you for the update. I am glad you found some relief. I believe you're right about vitamin D--it really seems to make a difference in the symptoms. Benadryl has never worked for us, so we only tried that once, and just use a really simple effective moisturizer, which seems to help with redness and peeling.