Flu feeling

[perrier]

hello everyone

My daughter has had no stop flu feeling for over 7 weeks now. She has had this feeling before,but not so persistently.

Any suggestions how to get this down?

 

[TigerLilea]

Your daughter should go in to see her doctor and get testing done to rule out any other illnesses. You can't always assume that something new is CFS/ME related. Hope she is feeling better soon.

 

[perrier]

Your daughter should go in to see her doctor and get testing done to rule out any other illnesses. You can't always assume that something new is CFS/ME related. Hope she is feeling better soon.

Hi Tigerlilea

I don think it's another illness.

 

[Daffodil]

@perrier has she had treatment for CFS/ME? I am in Canada also

 

[perrier]

@perrier has she had treatment for CFS/ME? I am in Canada also

Dear Daffodil
We have done the rounds in the USA and Europe. Seen CFS doctors.

I know things are marginally better in Ontario and BC. IVs are available, and alternative health care too.

But flu feeling is experienced often by ME sufferers. What is usually given to bring down this feeling?

 

[*GG*]

Has she ever tried LDN? (Low dose Naltrexone) it does seem to cause a flare up in most people, so probably not a med to try when so low!

I know of a Dr in Massachusetts who does IVs. Not sure if that is feasible.

GG

 

[caledonia]

Possibilities with surgery (no particular order)
1. stress from surgery impacts adrenals and causes adrenal fatigue or makes existing adrenal fatigue worse
2. anesthesia is the wrong kind for ME/CFS and is not well tolerated
3. antibiotics taken without probiotics causes candida overgrowth

I would guess based on the several weeks delayed response and the flu like things I've had and what worked for them, that it could be #3. When I had candida overgrowth the flu feeling was constant for weeks at a time. Sometimes I even had a low fever with it.

So in this scenario, she had surgery and took antibiotics for a few weeks, then stopped. Then the candida overgrowth occurred.

If this is the case, a broad spectrum herbal anti fungal such as caprylic acid or grapefruit seed extract should be helpful. You would know within a few days if it was going to work. I don't think it would hurt to take it if that wasn't the issue.

Then if that is the case, also start taking probiotics.

You can also do a stool test such as the one from Doctors Data to see if there is candida overgrowth or other dysbiotic gut bacteria. The test results should also give you ideas for what herbs or medicines will kill off the bad gut bugs. You can order this online such as at Integrativepsychiatry.net. or Directlabs.com (not sure if they're available for Canada?)

You can do a 24 hour saliva cortisol test for adrenal fatigue. There are various treatment options like adrenal cortex extract and replacing lost electrolytes.

If it's just general post exertional malaise, there might not be too much you can do except wait it out. Treat the pain with ibuprofin or whatever she tolerates so she's more comfortable.

If it was the anesthesia, I would think that would hit you right away with nausea and so forth.

 

[Daffodil]

Dear Daffodil
We have done the rounds in the USA and Europe. Seen CFS doctors. But she is highly reactive,and has trouble tolerating treatments,and pills etc. She tolerates IVs well. But nothing is pulling her out of the hell; just our bank account is eroded.

At the moment she's not on much due to 7 episodes of life threatening haemorrhaging.

Here in the province of Quebec there is no help whatsoever. None. The illness is dismissed or relegated to psychiatry,because as one nice doctor told me,they don't know where to put it!

Antidepressants and klonopin,and that's it..here in la belle province. IVs are not permitted here,except when hospitalized.

I know things are marginally better in Ontario and BC. IVs are available, and alternative health care too.

But flu feeling is experienced often by ME sufferers. What is usually given to bring down this feeling?

hi perrier. it is the same or maybe even worse in Ontario.

you say you have done the rounds in Europe..which doctors did you see in Europe? If you saw Dr. DeMeirleir, he would have given you IVIG or you could have taken home immunoglobulin for subcutaneous infusions at home. This is what I did. He gives it low dose to keep cost down. This will help your daughter tolerate the medicines.

The flu like feeling comes from the elevated cytokines and other inflammatory factors. There is a lot of debate as to why this is happening.

Everyone has their own opinions about this illness and generally, people do not want to be told what to do...so I will just tell you my experience. I got "mono" in 1993 when i was 22. Never recovered. Got so sick that I eventually could not get out of bed except to use the bathroom. Came very close to suicide many, many times. Saw several specialists in the USA...spent almost everything my mother had saved her entire life...but no one could help. Tried all sorts of things (some pretty toxic drugs too). Finally, as a last resort, I went to see Dr. DeMeirleir and now, 4 1/2 years later, I am at 40 -45% functioning. I am hoping to get even better but due to my age and length of illness before treatment, I cannot expect total recovery, I am sure.

Since your daughter is still young, I hope you can get her proper treatment.
xo
xo

 

[Daffodil]

@perrier one thing my doctor does is test for Lyme and he finds most people positive. You can send away for the LTT ELISPOT for Borrelia from Armin Labs in Germany (the test kit is free).

If your daughter is positive, you may also want to consider Dr. Maureen McShane who treats a lot of people from Quebec from her office in Plattsburg(?) I think. She is Canadian herself.

xo

 

[Seven7]

Any suggestions how to get this down?

In my case that means by immune system has gone too active. I do immune modulators drugs but there are things like acai tea (see list bellow).

Make sure she is not taking too much immune booster supplement (more than her body can handle), foods, teas or drinks. I am no doctor just my experience.

http://chestnutherbs.com/herbs-for-the-immune-system/
Immunomodulating Herbs
Astragalus membranaceous – Astragalus, root
Eleutherococcus senticosus – Eleuthero, Siberian ginseng, root
Cordyceps sinensis – Cordyceps, fungus growing on catepillars (only use cultivated, over-harvested)
Ganoderma lucidum, G. tsugae – Reishi, varnished artists conk, fruiting mushroom body
Lentinus edodes – Shitake mushroom
Ligustrum lucidum – Privet, fruit
Ocimum tenuiflorum syn. Ocimum sanctum – Holy basil, herb
Panax ginseng – Asian ginseng, root (only use cultivated sources, over-harvested)
Panax quinquefolius – American ginseng, root (only use cultivated sources, over-harvested)
Rhodiola rosea – Roseroot, root
Schisandra chinensis – Wu wei zi, berries
Withania somnifera – Ashwagandha, root

 

[perrier]

Has she ever tried LDN? (Low dose Naltrexone) it does seem to cause a flare up in most people, so probably not a med to try when so low!

I know of a Dr in Massachusetts who does IVs. Not sure if that is feasible.

GG

Hi GG
Yes she tried LDN for more than a year

 

[perrier]

@perrier one thing my doctor does is test for Lyme and he finds most people positive. You can send away for the LTT ELISPOT for Borrelia from Armin Labs in Germany (the test kit is free).

If your daughter is positive, you may also want to consider Dr. Maureen McShane who treats a lot of people from Quebec from her office in Plattsburg(?) I think. She is Canadian herself.

xo

She's done various Lyme tests

You are all so kind to me
Thank you

 

[perrier]

In my case that means by immune system has gone too active. I do immune modulators drugs but there are things like acai tea (see list bellow).

Make sure she is not taking too much immune booster supplement (more than her body can handle), foods, teas or drinks. I am no doctor just my experience.

http://chestnutherbs.com/herbs-for-the-immune-system/
Immunomodulating Herbs
Astragalus membranaceous – Astragalus, root
Eleutherococcus senticosus – Eleuthero, Siberian ginseng, root
Cordyceps sinensis – Cordyceps, fungus growing on catepillars (only use cultivated, over-harvested)
Ganoderma lucidum, G. tsugae – Reishi, varnished artists conk, fruiting mushroom body
Lentinus edodes – Shitake mushroom
Ligustrum lucidum – Privet, fruit
Ocimum tenuiflorum syn. Ocimum sanctum – Holy basil, herb
Panax ginseng – Asian ginseng, root (only use cultivated sources, over-harvested)
Panax quinquefolius – American ginseng, root (only use cultivated sources, over-harvested)
Rhodiola rosea – Roseroot, root
Schisandra chinensis – Wu wei zi, berries
Withania somnifera – Ashwagandha, root

Thanks inester
I need to try one simple thing at a time
I can get Acai juice or powder
I shall purchase it tomorrow
I have adhwaganda powder in the house
It's so hard when she is so sick

 

[perrier]

hi perrier. it is the same or maybe even worse in Ontario.

you say you have done the rounds in Europe..which doctors did you see in Europe? If you saw Dr. DeMeirleir, he would have given you IVIG or you could have taken home immunoglobulin for subcutaneous infusions at home. This is what I did. He gives it low dose to keep cost down. This will help your daughter tolerate the medicines.

The flu like feeling comes from the elevated cytokines and other inflammatory factors. There is a lot of debate as to why this is happening.

Everyone has their own opinions about this illness and generally, people do not want to be told what to do...so I will just tell you my experience. I got "mono" in 1993 when i was 22. Never recovered. Got so sick that I eventually could not get out of bed except to use the bathroom. Came very close to suicide many, many times. Saw several specialists in the USA...spent almost everything my mother had saved her entire life...but no one could help. Tried all sorts of things (some pretty toxic drugs too). Finally, as a last resort, I went to see Dr. DeMeirleir and now, 4 1/2 years later, I am at 40 -45% functioning. I am hoping to get even better but due to my age and length of illness before treatment, I cannot expect total recovery, I am sure.

Since your daughter is still young, I hope you can get her proper treatment.
xo
xo

I'm very deeply touch by your story Daffodil
I'm so sorry and so angry
That things are not moving faster all over the world
And people are just allowed to languish in neglect and pain
I send you love and positive energy and may your day be a good one tomorrow

 

[Seven7]

Thanks inester
It's so hard when she is so sick

Did you added any new supplement, any new tea or food she doesn't ussually have?

I gave you a list so you try with what you have ( don't buy new stuff) some do better w immune suppressant, some w booster some w modulators. The idea is to try of each group and see what she reacts well to.

I always crash on boosters and supresants. The reaction to mods is inmidiate for me.

 

[perrier]

Possibilities with surgery (no particular order)
1. stress from surgery impacts adrenals and causes adrenal fatigue or makes existing adrenal fatigue worse
2. anesthesia is the wrong kind for ME/CFS and is not well tolerated
3. antibiotics taken without probiotics causes candida overgrowth

I would guess based on the several weeks delayed response and the flu like things I've had and what worked for them, that it could be #3. When I had candida overgrowth the flu feeling was constant for weeks at a time. Sometimes I even had a low fever with it.

So in this scenario, she had surgery and took antibiotics for a few weeks, then stopped. Then the candida overgrowth occurred.

If this is the case, a broad spectrum herbal anti fungal such as caprylic acid or grapefruit seed extract should be helpful. You would know within a few days if it was going to work. I don't think it would hurt to take it if that wasn't the issue.

Then if that is the case, also start taking probiotics.

You can also do a stool test such as the one from Doctors Data to see if there is candida overgrowth or other dysbiotic gut bacteria. The test results should also give you ideas for what herbs or medicines will kill off the bad gut bugs. You can order this online such as at Integrativepsychiatry.net. or Directlabs.com (not sure if they're available for Canada?)

You can do a 24 hour saliva cortisol test for adrenal fatigue. There are various treatment options like adrenal cortex extract and replacing lost electrolytes.

If it's just general post exertional malaise, there might not be too much you can do except wait it out. Treat the pain with ibuprofin or whatever she tolerates so she's more comfortable.

If it was the anesthesia, I would think that would hit you right away with nausea and so forth.

Dear Caledonia

We have caprilic acid.

I will work on electrolytes
Thanks

 

[perrier]

hi perrier. it is the same or maybe even worse in Ontario.

you say you have done the rounds in Europe..which doctors did you see in Europe? If you saw Dr. DeMeirleir, he would have given you IVIG or you could have taken home immunoglobulin for subcutaneous infusions at home. This is what I did. He gives it low dose to keep cost down. This will help your daughter tolerate the medicines.

The flu like feeling comes from the elevated cytokines and other inflammatory factors. There is a lot of debate as to why this is happening.

Everyone has their own opinions about this illness and generally, people do not want to be told what to do...so I will just tell you my experience. I got "mono" in 1993 when i was 22. Never recovered. Got so sick that I eventually could not get out of bed except to use the bathroom. Came very close to suicide many, many times. Saw several specialists in the USA...spent almost everything my mother had saved her entire life...but no one could help. Tried all sorts of things (some pretty toxic drugs too). Finally, as a last resort, I went to see Dr. DeMeirleir and now, 4 1/2 years later, I am at 40 -45% functioning. I am hoping to get even better but due to my age and length of illness before treatment, I cannot expect total recovery, I am sure.

Since your daughter is still young, I hope you can get her proper treatment.
xo
xo

Dear Daffodil
You are not old. Life begins at 50 said Dostoevsky.and he's right.
It's just that I wish all the folks doing the had work would come up with something really soon.

 

[perrier]

Did you added any new supplement, any new tea or food she doesn't ussually have?

I gave you a list so you try with what you have ( don't buy new stuff) some do better w immune suppressant, some w booster some w modulators. The idea is to try of each group and see what she reacts well to.

I always crash on boosters and supresants. The reaction to mods is inmidiate for me.

Well, I have been making flower teas. Rose tea. Greek mountain tea. And such.
But they are mild.

 

[taniaaust1]

Thanks inester
I need to try one simple thing at a time
I can get Acai juice or powder
I shall purchase it tomorrow
I have adhwaganda powder in the house
It's so hard when she is so sick

Treat the herbs just like you would with drugs and only try a quarter of a dose and build up to whatever a child would take in case its one she may react too.

 

[taniaaust1]

Dear Caledonia
Yes, the surgery followed severe bleeding trauma, she stopped breathing. So, the adrenals certainly may be an issue. There were no antibiotics. And the anaesthesia was administered as per Cheney recommendations.

But she needs some help, and here in the winter wonderland none is to be found.
We have caprilic acid. But she has cut on most supplements because she had a serious bowel surgery.

I will work on electrolytes
Thanks

If you know anyone, a friend, neighbour or family member who is nurse, maybe you could get someone to give her an saline IV.

IV saline solution and IV equipment is available by ebay (you may have to order it in from overseas Ive ordered hospital approved stuff before from ebay, it is expensive but if it makes me feel a lot better and helps get me back on feet again its worth it). I wonder if due to the bleeds and the ME, low blood volume too could be knocking her around a lot and she may need more fluids then the hospital is aware.

When I get very bad, 2 Litres of saline really can help pick me up some (you probably wouldnt give a child that much though I guess things like that also would depend just not on how bad a person is with low blood volume but the persons size).

I guess if you tried this you could probably go by her blood pressure (take it and watch for shifts, when my blood volume is better and my body has had enough IV, my blood pressure stabilises and stops shifting dramatically to postural changes such as to sitting and standing from laying).. and how she feels with it to help know if you are giving her too much and test out if she's an ordinary sized teen say 500ml trial one day and 1L a couple of days later if the 500ml didn't seem to do anything.

I can tell when Ive had enough IV by feel. With so much (for me its around 1L) I can sit easier (by that point Im not feeling so dreadful) but with a bit more (another 1L) I can stand without it causing BP issues and other problems.

When my blood volume gets even worst then it usually is, I feel feverish (and often have fever), feel that horrible fluish kind of feel where one feels extreme malaise (over all unwellness sick feel and less energy). I will continue feeling like crap and this way till I get an IV (things like electrolyes, I just mostly pee out though they can help a bit at times but not if I'm too bad). So I wonder if some of her crash is cause her blood volume hasn't picked back up enough after the bleed and the surgery. It can be bad enough without having bleeds.

Other then that, there may not be a to which will help except to wait out till the crash is over and keep resting. (and yeah taking her anywhere in such a state could do more harm then good). Don't do anything which could risk making her worst. It could take her 6mths ... or a year to recover from surgery with this condition due to the stress her body has been through.