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Flu-like Illness Onset Poll

If your ME/CFS began with a flu-like illness, did it come on rapidly?


  • Total voters
    30

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
SOC mentioned in another thread that she and her daughter came down with the same very sudden onset flu-like illness that began their ME/CFS.

When mine started, I went to bed feeling fine and woke up ill, then rapidly became more ill.
Another person who ordered the same thing for dinner the night before also became very ill. I do not know how soon he became ill; I think within 36 hours. This would require such a short incubation period that I have to admit that it could have been just a coincidence.

I am wondering how many others people with flu-like onset ME/CFS has a very rapid onset and if there is any significance to that.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Can't recall onset, too long ago, sorry
it wasn't a "normal" Flu though, it lingered for about 2 months, very very thick, choking phlegm hard to breathe, ick
bloody awful bug whatever it was, it was rampant around the area at the itme, and oen GP said that was when a ot of oflk came down with ME
Also have ot say we had some damp proofing put down around same time, and it was hellishly toxic (fumes) made me and the workmen terribly ill
I cna't say which came first or true cause as I was extremely FUBARed by all that crap and in a mess for years after.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Unfortunately, what is was has been lost in the brain fog. I kind of think it was seafood. I grew up in the Midwest and was vacationing in Florida, so that was a common thing for me to order when it was available.


ETA: Given how quickly we became ill, a toxin does make more sense than a pathogen. It felt a lot like 'flu' though, and my friend described her partner's illness as 'flu'.

Further thoughts: My 'flu' appeared to respond to antibiotics. The last day of the antibiotic, I was feeling fairly well. The next day I was hit by a rebound infection, which is common when I take antibiotics. The rebound infection was worse than the original and I suspect it is what caused my ME/CFS. Thus I also suspect that if my doctor had given me more antibiotics, as I had requested 2 days before, I might not have had the severe rebound infection and the ME/CFS. @&*# doctor! My other rebound infections have hit about 3 days after the end of the antibiotic and were not nearly as severe.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Here is one suggestion to this dilemma I have been thinking about. It is both a flu-like illness and a toxin in at least a subset.

That flu-like feeling is our immune system, not the flu. Its a common response to a range of immune stimuli. In ME we typically have elevated serum LPS (lipopolysaccharide). I suspect, but can't yet show, that the transition from just ill to having ME may occur when the LPS starts spilling over from the portal vein and gut into the regular blood supply, including the gut. Common triggers would include pathogens that target gut lining or blood vessels, or indeed the liver. One such group of pathogens are enteroviruses, many of which induce flu-like symptoms. Once LPS becomes systemic I suspect our immune system goes nuts and stays nuts. If this cannot be corrected rapidly a host of secondary complications ensues, resulting in long term high LPS.

This could be disproved by showing that correcting LPS does not affect ME symptoms in those who have a history of high LPS, not other subgroups.

However, it might be that serum LPS is just associated with the real cause/s and symptom severity, and is not causal.

I did not vote in the poll as I was sick prior to my problems increasing to full ME. I had, I think, sub-clinical (super mild) ME, possibly due to measles encephalitis as a child. However the transition to genuine mild ME came after/during several weeks with a severe stomach flu - flu with gastrointestinal symptoms. This was 1985. I do not recall details, I was too sick to be paying attention and my memory is fubar anyway.

Bye, Alex
 

SOC

Senior Member
Messages
7,849
My daughter and I came down with identical symptoms 7-10 days apart which sounds like an incubation period to me. We went from feeling fine to feeling hit by a truck in about an hour. We had extreme fatigue, major muscle aches, and some cognitive issues. I remember telling people that week to stay away from me because I had the worst flu ever. I don't remember having any respiratory symptoms. We had no GI symptoms.

We were both sick for 10-14 days. I never recovered entirely, but seemed mostly back to normal. My daughter appeared to recover completely. We both had relapses over the next few years. In hindsight, I think those relapses were probably reactivations of one or more viruses.

So we are certainly in the sudden onset viral subset. We got good results with antivirals, so at least that's consistent. :)
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Here is one suggestion to this dilemma I have been thinking about. It is both a flu-like illness and a toxin in at least a subset.
Gee Thanks, Alex. Two things wrong with me is just what I need. ;) Actually, after all of these years there are a lot more than two things wrong with me and I don't know if any of them were causal.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I have done/been doing Detox for probably 2 years, since seeing my Dr for 4 years. I do CSM with chlorella, he cut me down to 1 dose a day, and I think I quit doing it completely in a week or 2, need to check his notes!

GG
 

Enid

Senior Member
Messages
3,309
Location
UK
I've voted as "like normal flu" only because it was not as rapid as your Little Bluestem. It started as a sore throat and I carried on working but that would not go away and decline into full blown ME took about 2 to 3 weeks to bedbound very ill.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I have done/been doing Detox for probably 2 years, since seeing my Dr for 4 years. I do CSM with chlorella, he cut me down to 1 dose a day, and I think I quit doing it completely in a week or 2, need to check his notes!

GG
How much have you improved with the detox?
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
I drove to work feeling on differently than usual. I was at work doing my usual work when I became aware that I was so spaced out I was sitting there not getting any work done. I have no idea how long I was sitting there like that.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
How much have you improved with the detox?

If I had to guess, which is what I have to do, because I do not do only one thing at a time (got tired of that, had a major crash 3 years ago (massive pain, had Lidocaine infused into my blood stream), been sick 9 years now, so I went "nuts" doing all kinds of new things), I would say 10% possibly more. My Dr checks my hormones and vitamins etc....

He has me on DHEA 75mg/day, Armour Thyroid, (75 mg/day), CardioB, Crave Arrest. http://www.professionalsupplementce...tm?green=0726A962-D6C4-56C6-BC85-E67D84B99D71

I have okd with him to take Alpha Lipoic Acid (600mg), CoQ10 w/ L fumurate (60mg/340mg) (Pure Encapsulations), N Acetyl cysteine (600mg) from VitaCost. Vitamin D, 5,000 IUs to 10K in the winter, have it checked regularly. Quality MultiVitamin, used to take a "centrum", but that's not good quality. Take lots of Magnesium, various forms.

Take Mirtazapine for sleep, only at 30mgs now, sometimes go up to 37.5mg if I had a lot of rest that day, otherwise I have trouble falling asleep. Also take 3mg of Melatonin, LDN 4.5mg and a muscle relaxant at bed, with Vitamin C and Fish Oil (lovaza) prescription.

He just recently put me on Clomiphene citrate (Clomid) because my testosterone has been on the low side (I'm a male). 25 mgs 3 times per week

Been seeing him for 4 years now, made the greatest gains in the last 2 years, he also helped me get accommodations at work, later start time, so I can be to work on time!

GG, I do all of these supplements/scripts daily, unless otherwise noted. I pity my insurance company, I cost them big time! I also do oxygen at night with my vPAP machine. Off for a little bike ride. Hope this helps, your "active" CFIDS sufferer!

I used to have very bad brain fog, but much better these days, and after doing PT for the last 3 years, various occasions, for hip/back pain. I joined a gym and do a little 1/2 hour work out. I also work 30 hours/week

Cardio B website: http://www.orthomolecularproducts.com/ProductDetails.aspx?id=5d7a2537-f40a-44b1-938f-0121ff616a81 he said I will have to be on this the rest of my life do to a Methylation issue MTHFR genetic issue.

PS Also take a baby aspirin every day (81mg)

PSS Also had the 2 day in a row exercise testing done 2 years ago, because I thought I might need to go out on disability, and wanted to have good records, if necessary.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Hi Little Bluestem,
Please could you elaborate on the question a little please?
By 'sudden onset', do you mean that there were no warning signs, and that it went from feeling perfectly well into full-blown flu within about 12 hours?
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Well, by sudden I mean more rapidly than a normal flu. It has been so long since I had a normal flu that I am not sure what that time period is. It may also vary by person. I think that for me a normal flu could pretty well take me down in 12 hours. I guess it may need to be somewhat subjective. At the time that you got sick, did you think that that 'flu' had come on more rapidly than your usual flues?

Now that you mention it, I think the "no warning" aspect may play into it as well. With a normal flu, you often "feel a flu coming on" before you actually "get the flu".
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Thanks Little Bluestem.
It's hard to answer the question, because flu (as opposed to a bad cold) is such a rare occurrence.
With my ME, I certainly got ill very suddenly, one afternoon working on a hospital ward.
I thought it was flu or a bad cold when it first started. I remember feeling unusually weak, very quickly.
It certainly was very sudden, with no warning signs, but it's difficult to compare with normal flu.
It might have been more sudden than getting a normal flu/cold, but I think there may have been other times when I've got ill suddenly.
Interesting question. I hadn't really thought about it before.
Bob
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
When you say that you got ill very suddenly and remember feeling unusually weak very quickly, that sounds like a rapid onset to me.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Unfortunately, what is was has been lost in the brain fog. I kind of think it was seafood. I grew up in the Midwest and was vacationing in Florida, so that was a common thing for me to order when it was available.


ETA: Given how quickly we became ill, a toxin does make more sense than a pathogen. It felt a lot like 'flu' though, and my friend described her partner's illness as 'flu'.

Further thoughts: My 'flu' appeared to respond to antibiotics. The last day of the antibiotic, I was feeling fairly well. The next day I was hit by a rebound infection, which is common when I take antibiotics. The rebound infection was worse than the original and I suspect it is what caused my ME/CFS. Thus I also suspect that if my doctor had given me more antibiotics, as I had requested 2 days before, I might not have had the severe rebound infection and the ME/CFS. @&*# doctor! My other rebound infections have hit about 3 days after the end of the antibiotic and were not nearly as severe.

Flu is a virus.. antibiotics do not kill viruses. Antibiotics thou can treat secondary bacterial infections which one can get after catching the flu
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
The reason my physician refused me more antibiotics even though I was still running a fever was that my lungs were now clear. I must have had a lung infection (don't recall now). Would that have been bacterial? Because of the brain fog, I don't remember much of that period. I do remember why the doc would not give me the abx because it made me mad. My lungs may have been clear, but I still had a fever so I was still sick!

I did fly home from vacation the day I got sick. An airplane cabin is a great place to pick up a respiratory infection, especially if your immune system is already under attack.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
when one's lungs arent clear.. its usually gone bacterial eg flu can lead to pneumonia.. and the antibiotics then clear the lungs up. Sounds like the antibiotics did get rid of the secondary infection which your doctor gave them to you for.