• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Childhood illness & ME/CFS ?

daisybell

Senior Member
Messages
1,613
Location
New Zealand
I think I was pretty healthy as a child, although I did get ear infections on a fairly regular basis and need antibiotics. My health and stamina were never the same after I caught parvo in my thirties....
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
Interesting thread! I was talking to my mother and one brother on Sunday about possibilities as to why I am so sick and everyone else is healthy. Of course, I have two other siblings that had health issues I often wonder if it could be autoimmune, but they are both now deceased so no way of knowing.

I had brought up pollution, and my brother (whom is 10 years older) pointed out that cars were very dirty burning, and many pesticides and chemicals weren't banned yet. I (like gingergirl) can say that I had strep throat and ear infections constantly as a child, have had chronic issues with warts since maybe 8 or 10, and many things that I have wondered about. But my brother was pre vaccination era, so he had mumps and measles as a child. I didn't as I was vaccinated. Oh, also my mother had meningitis before she got married, so she was quite ill for a long time yet doesn't have CFS.

It is so confusing, I wonder so often what is different from me. I think it is more multi faceted than stemming from one or two illnesses. Yet so hard to know!

I hope all the new research eventually figures this out to some extent.
 

digital dog

Senior Member
Messages
646
Debbie, you have certainly had a difficult life in terms of health. I hate hearing about children with ME. It all seems so unfair that people can go through life feeling so ill.
Just wondering whether you have tried LDN and if so whether it helped you.
 

Debbie23

Senior Member
Messages
137
Debbie, you have certainly had a difficult life in terms of health. I hate hearing about children with ME. It all seems so unfair that people can go through life feeling so ill.
Just wondering whether you have tried LDN and if so whether it helped you.
Hi. :) No I've not tried LDN, it would be interesting to try it but tbh it's only really in this past year I've started seriously researching my illness personally after being so ill for so long, so I'm still relatively new to actively trying things beyond pacing. But it could be one for the future for me, I'm certainly interested reading other's experiences.

I have been on long term antibiotics for the various skin problems I've had in the past which clear the skin infections up but don't help my ME much at all. This has included Doxycycline which I think I've seen mentioned a lot. My skin issues get better but not much else unfortunately.
 

Debbie23

Senior Member
Messages
137
I think antibiotics can make things a lot worse.
I really hope that you find something that helps you.
I would definitely give the LDN a go...and thats from someone who tried it and reacted terribly to it.
X
Typically speaking I don't tend to take antibiotics unless my skin is really, really bad because I do worry about what they could be doing to my gut. Possible TMI alert but I'm talking huge boils that just will not go away and keep erupting putting me at serious risk of pressure sores because I'm bedbound and among other places they can erupt on, or around, my spine etc. and obviously I'm leaning on that and it's hard to remove the pressure from them. When I had them very close to becoming more serious and right on the edge of pressure sores, the district nurses said that because they were compromising my skin in that way and my body couldn't seem to manage to clear them up by itself, the priority was to clear them up ASAP and stop them from getting to that point in future, and the doctors I've had agreed. As I say, usually when I'm in a crash I can have bouts when my skin kind of explodes like this, and just doesn't heal without being on antibiotics. So me and my doctors and the district nurses etc. thought it's usually a case of 'it's probably not great for my gut, but it's likely the lesser or two evils!' For me.

It's like vaccines. My dad can't have them because of how they affect his ME, but he's in the category of ME where he barely gets any viruses or bugs at all since his ME started, so opposite to me where I catch everything going and struggle to shift it. But due to his job and our circumstances, it's inevitable that I will be exposed to somethings like colds and flu, no matter how careful we are. If i get it , and I usually do, it will make my ME worse, sometimes seriously. So I have the vaccine because although it makes my ME worsen, and for a fair while Afterwards, the worsening isn't as bad as if I got the full blown flu or even a cold, if you see what I mean. Again, lesser of two evils.

It's possible we are making the wrong choices, but like with so many things with this illness it's hard to know which way to 'jump'. I don't mean this negatively, but rather practically, but I often think it's not a case of 'what will let me avoid harm', because everything can but rather 'what will do the least damage overall? AB or long term skin infection and pressure sores? Or vaccine and crash or full blown flu and much, much bigger crash?'. It's hard to know what to do for the best a lot of the time! :)

But I will definitely look into LDN, thank you for sharing your experience And suggesting it, I really appreciate that, and discuss it with my new GP, it's funny because although moving from one side of the country to another has caused me to crash as expected. I've gained a GP who knows all about ME and the latest research including what's going on in Norway! My old GP was also lovely, but that was a very pleasant surprise so it could be worth a discussion. :)

Sorry again for a long post, I didn't mean to thread hijack!
 

digital dog

Senior Member
Messages
646
Wow, the fact that your doctor knows so much about ME is fantastic. I bet you he knows someone with ME personally. Are you in the UK or USA?

Yes, we all have to make difficult choices with ME. It sounds like you have to 'jump' in all sorts of directions which must be hard.

I really hope something you try helps. Have you tried gluten free? I only ask as I have recently gone gluten free and my digestion has improved which I feel can only be a good thing...maybe!
 

littlebird6180

Senior Member
Messages
119
I had scarlet fever as a child. I also had tonsilitis and had my tonsils removed. I've wondered about this connection as well because while I tend to pin puberty as the turning point for me, I wasn't a healthy child either.

I also got homofluos influenza.

Also, i'm on LDN now and am feeling significantly better. I too only started researching and really taking it all seriously in the last 4 months so it's a lot to process but luckily i am seeing a great doctor.
 

Debbie23

Senior Member
Messages
137
Wow, the fact that your doctor knows so much about ME is fantastic. I bet you he knows someone with ME personally. Are you in the UK or USA?

Yes, we all have to make difficult choices with ME. It sounds like you have to 'jump' in all sorts of directions which must be hard.

I really hope something you try helps. Have you tried gluten free? I only ask as I have recently gone gluten free and my digestion has improved which I feel can only be a good thing...maybe!

I'm in the UK, we are relatively close to Newcastle now and he said it's the work being done there which is largely informing how ME is regarded locally here, and which is transmitting the knowledge relating to latest research, so all good things hopefully! :) I have tried gluten free because my mum has coeliac disease, so for a long time I didn't eat a great deal of wheat anyway because she did all the cooking and it was easier to just cook everything gluten free. But recently one of the things I'm trying is a high fat, low carb diet or modified keto/ paleo. So I used to eat minimal wheat but now no wheat at all. It has helped some symptoms, I used to get racing heart beat and stomach issues after eating, which I tie to eating more carbs and less fat rather than wheat, if that makes sense. Because I wasn't eating that much wheat to begin with. I've also had blood test for coeliac and that was apparently clear so I'm assuming it's the lots of carbs in general, rather than wheat specifically, that doesn't suit me. My IBS also much better when eating like this, despite full fat dairy, so I'm assuming I'm not dairy intolerant despite that being in the family. It still early days and I know sometimes diets stop working for people but so far, knock in wood, it seems to be helping with somethings even though my illness has not improved hugely overall.
 

Gingergrrl

Senior Member
Messages
16,171
I also got homofluos influenza.

This is what they told me my tonsil infection was in 2010 after two tests ruled it negative for strep. It was the worst infection I'd had (prior to mono in 2012) which made the 2010 one look minor!

Can H. Influenza be related to ME? (assuming I even had that which I am not certain and think the ENT was just guessing at that point.)
 
Messages
21
Location
Scranton, PA, USA
For many years--appx. from middle school through high school years--I would get Strep throat/Tonsillitis about 4-6 times a year. Occasionally it would get so bad so quickly that my parents would take me to the ER instead of waiting for our GP, etc...especially since I have been very prone to clinical dehydration since I was hospitalized for it around age 8-9 following a nasty bug & I would have immense difficulty swallowing at all during my worst bouts of Strep Throat Our family GP (he delivered both myself & my brother) told us I had some sort of Strep susceptibility issue yet I still struggle to recall the exact label/name he specified it was... :/ .
Anyway, I became resistant to "Step 1" (milder) antibiotics such as Amoxicillan
at least by the time I got to high school.
I have had to be given stronger antibiotics to knock out infections (such as Z-pak, Augmentin, etc.) ever since.
At age 20, I got Mono from my college roommate (she was very symptomatic for weeks before I was yet had a needle phobia and did not get it confirmed at the time but knew that not a lot could be done if she tested positive anyway as her mom was a nurse). I did get a blood test (mono spot) from a GP before a school break, and while back home & feeling fine again by that point, I received the news that my monospot test came back positive. I ended up returning to school after that break, and remember that much unlike the semester before, I was soon dealing with some immense new stressors in my life. Not long after getting my living situation debacle straightened out, I began feeling as though the Mono had come back--with a vengeance. I found a great PCP in the area & he finally surmised I had FMS/CFS. I struggled to stay at school, balancing a full course load while working part-time. I have not felt the same or 'normal' ever since. Over a decade later & I have recently been definitively diagnosed with Chronic Epstein-Barr Virus (Reactivating) as recent specific blood testing revealed an active EBV infection.
I am currently on an antiviral regimen under a Specialist's direct guidance in which he & my PCP have conference calls (he is in FL, whereas I live in PA) and so forth. Currently, I do not appear to be having any side effects from the latest anti-viral therapy but am still working my way up to the optimal daily dosage.
 
Last edited:
Messages
44
I had scarlet fever as child age 6/7.
Also had chicken pox 3 times tonsils probloms glandular fever. also from age 4 sposbly eperlisy partial seizes.

I am 25 i always been sickly child as mam says i wonder if these illness has caused it.
I had my two beautiful children (young i no) my lil girls just gone 3 i had 3 years of downhill pots cfs/me
Sure the anesthetic has caused my serve crash!(had c section with both my children.)
 

unto

Senior Member
Messages
172
absolutely no.....;
ME is just a viral illness (such as measles)
unfortunately for life .....
Which and how many diseases a patient has had in his childhood before the ME could affect how we see the ME (mild or severe) as well .....
as other factors (perhaps) can affect this, (genome, pollution, vaccines, nutrition, stress etc.. But even if you had all the childhood diseases, but have not met the "germ" that causes ME, you do not have the ME ...... even if you're tired
or vulnerable
 

brenda

Senior Member
Messages
2,266
Location
UK
Anyone born in the 40's or early 50's may have suffered mercury poisoning from teething powders which were taken off the market but it was covered up by calling it Pinks Disease and parents may have forgotten about it especially if it was not severe like mine. It would have lasting effects. I had immune and endocrine dysfunction since.
 

Jennifer J

Senior Member
Messages
997
Location
Southern California
I didn't have Scarlet fever or Rheumatic fever. I was always missing school or work because I was sick. School records from kindergarten on had me missing 20 days of school a year. I hated missing things and being sick. The only reason I didn't lose my jobs when I worked, and I almost did with a few, was because they liked me. My mom said the doctors couldn't find anything wrong with me most of the time, so she didn't think anything was either. I remember when working I would some times get sick before everyone else did. I was so relieved to hear they were sick with the same symptoms as me because I was always questioning myself about why I was sick so much when I didn't want to be. I just wanted to be well to the extent others around me were.

Dr. Chia thinks maybe because of my enterovirus load, I may have contracted the ones that I have (I can't remember the name now) when I was little so that may have played a role in all this. I did have a foaming at the mouth being hospitalized high fever seizure when I was 3. (They never knew what caused it, yet said it can happen among young kids without it happening again. Was that the case or is there something else that still plays a role in my health?) I also have had allergies since I was 2 or 3, mono and many times strep throat in my early teens, and multiple courses of antibiotics over 12 times in one year in my early 20's for sinus infections.

Many years later several things contributed to me being where I'm housebound and bed bound most of the time and unable to work. Part of me does wonder if I've had ME/CFS since a child. I don't know. It's hard to weed everything out. Did the allergies have me run down and more susceptible to bugs? Was my busy childhood keeping me run down so I'd get sick? Was my immune system already not in good condition? Is it hereditary, my grandma had multiple health problems? Was it an enterovirus? ....
 
Last edited: