unrelenting flu feeling

[perrier]

Yes I always have the flu like feeling, and yes it fluctuates through out the day,
Usually I feel better in the evenings
I have started coq10 200mg but think I am going to double the dose to see if that helps.
I am just about to have a Mitochondrial profile test done with Dr Sarah Myhill,so that will be interesting.

Dear Jessie,
Best wishes with the testing. Thanks for the information. I am truly trying to see if most folks have what our family member has. And from the posts it does seem most do have this unrelenting flu feeling.

 

[perrier]

High dose Q10 is one of the PEM Buster supplements reported to reduce PEM.

Dear Hip
You are truly one of kind, my friend. Thanks for all the hard work.

Is there a particular (perhaps liquid) Coq which you can recommend which might not irritate the GI tract so much?

 

[perrier]

I've tried a lot of things, haven't found anything that works for me so I am looking at alternatives to supplements at the moment.

Dear Runner

Our family member has trouble tolerating supplements, and also reports not much effect, though I keep purchasing them. What are you looking at?

 

[perrier]

I have feelings of flu and feverishness nonstop for the last two years. Only agressive resting slightly helps. Will be trying more antivirals soon.

Thanks for the info. Yes, our family member is always doing aggressive resting, but the flu feeling never goes away. I'm having trouble understanding what brings it on. Is it the immune system? Or is it the mitochondria? Or what?

 

[perrier]

I also experience flu-like/viral-type symptoms every few days.This looks like worsening of existing ME symptoms, (glands more swollen, legs hurt more, sore throat, in-bed fatigue) plus sneezing and runny nose. When I get them it can put me in bed for a couple of days. Hard to distinguish at first if my PEM always felt like flu, if the viral-type symptoms were able to surface when I had overdone it, or if it was literally a new virus being caught every few days. Being in the uk and so not able to try pharmaceutical antivirals, I have consulted a medical herbalist to try a combination of broad-spectrum antiviral herbs. As of a few weeks ago he started me on a new variety and as I type, I can state that I have not had viral symptoms now for 11 days. This is a record for me since my relapse just over a year ago. I am also being treated for viral infection by my acupuncturist as of the last few weeks. I decided to focus all my treatments on the viral symptoms for a while, as I felt I couldn't get an accurate picture of what the ME was doing underneath all the fluishness. I now know that I can have PEM without viral symptoms, so it wasn't just a case of PEM "appearing" to be like a virus. Just to confuse matters, I was also on the CoQ10 + grapefruit protocol for a few weeks before I had to stop due to running out of CoQ10 and funds simultaneously! Am back on it now. I know not everyone is interested in complementary treatments for ME, but there's little else to try in the UK, happy to discuss further with folks if they want to message me.

Dear Blueberry
Thanks so much for all the details. Much appreciated indeed. In Canada there is no help whatsoever. Same medical system as the UK.
My daughter has been driven to the brink with this high flu feeling, and we can't seem to get it down. It's much higher now than in the past too.

 

[perrier]

There are it seems liposomal coq 10 products now available. But how to determine which is non irritating, or which is truly effective, is a puzzle for me.

 

[Hip]

Is there a particular (perhaps liquid) Coq which you can recommend which might not irritate the GI tract so much?

Not that I know of. The only thing I can think of is using Q10 suppositories like this one, (unfortunately very expensive) which would bypass the stomach and small intestine, and so might be less irritating to the GI tract.

You can also apply some supplements transdermally to a large area of body skin, where they are often absorbed. A supplement whose molecular weight is less than around 500 daltons will often be absorbed transdermally. Unfortunately the molecular weight of Q10 is around 860 daltons, so that's too high for transdermal absorption.

 

[perrier]

Not that I know of. The only thing I can think of is using Q10 suppositories like this one, (unfortunately very expensive) which would bypass the stomach and small intestine, and so might be less irritating to the GI tract.

You can also apply some supplements transdermally to a large area of body skin, where they are often absorbed. A supplement whose molecular weight is less than around 500 daltons will often be absorbed transdermally. Unfortunately the molecular weight of Q10 is around 860 daltons, so that's too high for transdermal absorption.

Dear Hip
Thank you. Very interesting product, indeed.

Another point: I keep reading that it is important to take Ubiquinol rather than ubiquinone. Doctors like Mercola and others like Dr Whitaker all talk about the need for Ubiquinol, and not the other. Please enlighten me.

 

[Hip]

I keep reading that it is important to take Ubiquinol rather than ubiquinone. Doctors like Mercola and others like Dr Whitaker all talk about the need for Ubiquinol, and not the other. Please enlighten me.

I don't know that much about it, other than ubiquinone converts to ubiquinol in the body, but some people speculate that the conversion pathway may not be working efficiently in older people.

 

[Hip]

@perrier: Looks like Dr Myhill recommends ubiquinol form of Q10 in the case of ME/CFS. I have never actually tried ubiquinol myself.

 

[Tammy]

Yes I had 24/7 horrible flu-like symptoms every day...........no breaks.......for 20 yrs. I no longer have those symptoms thanks to anti-viral protocol I've been on for a little over 2 and 1/2 yrs. I still have challenges..(nothing like before)............but no longer feel like death.

 

[ljimbo423]

Dear Jim
Thanks for the details. I am so delighted to hear you are getting your life back. But what did you take to treat dysbiosis, and mitochondrial dysfunction? And What brand of coq 10 are you taking?

Our family member has severe gut issues, and any coq we have tried caused intolerable GI pain.

Hi Perrier- I explain how I have treated dysbiosis and leaky gut here. I strongly recommend improving mitochondrial function first though.

Treating the gut will increase oxidative stress and worsen mitochondrial function, so that needs to be supported first to help prevent a worsening of symptoms.

I have been disabled for 27 years and spent 6-8 years 80-90% bedridden. Now I am physically active 4-6 hours a day and continue to improve, so don't give up hope on your family member!!

EDIT- for mitochondrial support I take mainly coq10. You might try starting with a very low dose of coq10, like 30mg and seeing if that is tolerated. If it is, slowly go up 30mg every 3-7 days? I haven't noticed any difference in brands of coq10. I take Swanson's Vitamins brand.

Jim

 

[caledonia]

When I first became disabled, I had a EBV reactivation. I felt like death for about 6 months. So that one was viral.

Later on I discovered that treating my candida further reduced flu like symptoms. I would rotate between caprylic acid, grapefruit seed extract and cat's claw. Each one would last about a year, and the flu like symptoms would come back, so I would rotate to the next one.

So that one was fungal. Some time after I got my last mercury filling out, I no longer needed the candida supplements.

Nowadays, I only feel flu like symptoms if I have PEM. I don't get fevers with it like in the other two cases, but I do get migrating joint and muscle aches, and extra fatigue.

I also used to take 100mg CoQ10, which helped my brain fog and concentration about 80%. I was also able to discontinue that some time after I got my last mercury filling out.

 

[Sushi]

It is like feeling one is injected with something, it is systemic. There is also a feeling of fever, yet normal values appear on the thermometer. It is also described as feeling toxic, poisoned.

It is there all the time, and has now also increased, and she cannot bear it anymore she says.

I see that you have been posting about results from Dr. Kaufman. He might be able to help with this set of symptoms. Perhaps check in with some of his patients? Since some have been able to lessen or heal the flu-like symptoms, it seems possible though how to approach it might vary from patient to patient.

Nowadays, I only feel flu like symptoms if I have PEM. I don't get fevers with it like in the other two cases, but I do get migrating joint and muscle aches, and extra fatigue.

That is my situation too. It is PEM that brings on this kind of symptom for me. Though I haven't been able to completely avoid PEM, I've been able to avoid the worst of it with lifestyle and supplements. Also, for me, cannabis will prevent severe PEM if I use it when I first get those "oh no, I've done too much" symptoms.

 

[Thinktank]

Yes, i have that. It feels like having the flu but the thermometer shows a low-normal temperature. When i do have a normal-high temperature (still within boundaries for normal people) i feel like death.
It's accompanied by a 24/7 drunk feeling and a hangover at once.

I have had every test and treatment possible for bacterial and viral infections, nothing has helped. The only possibility left is autoimmunity.

 

[perrier]

Yes I had 24/7 horrible flu-like symptoms every day...........no breaks.......for 20 yrs. I no longer have those symptoms thanks to anti-viral protocol I've been on for a little over 2 and 1/2 yrs. I still have challenges..(nothing like before)............but no longer feel like death.

Tammy
That really sounds pretty good; I'm very happy for you.

It seems from this thread that folks do different things. And that is very hard. When a person is very sick, it's so hard to keep trying things, for the side effects just augment an already utterly horrid state.

Thanks for indicating your history. I does seem as if this 'flu feeling' is there for many folks with this condition.

 

[perrier]

Hi Perrier- I explain how I have treated dysbiosis and leaky gut here. I strongly recommend improving mitochondrial function first though.

Treating the gut will increase oxidative stress and worsen mitochondrial function, so that needs to be supported first to help prevent a worsening of symptoms.

I have been disabled for 27 years and spent 6-8 years 80-90% bedridden. Now I am physically active 4-6 hours a day and continue to improve, so don't give up hope on your family member!!

EDIT- for mitochondrial support I take mainly coq10. You might try starting with a very low dose of coq10, like 30mg and seeing if that is tolerated. If it is, slowly go up 30mg every 3-7 days? I haven't noticed any difference in brands of coq10. I take Swanson's Vitamins brand.

Jim

Dear Jim
Thank you for the precise instructions. We will try to follow this.
I am very happy to hear things are on an upswing.

 

[perrier]

Yes, i have that. It feels like having the flu but the thermometer shows a low-normal temperature. When i do have a normal-high temperature (still within boundaries for normal people) i feel like death.
It's accompanied by a 24/7 drunk feeling and a hangover at once.

I have had every test and treatment possible for bacterial and viral infections, nothing has helped. The only possibility left is autoimmunity.

Dear think tank,
Thank you for this information. You describe it perfectly, even the temperature issue.

Our family member has also had every test, and treatment, and nothing has helped. But I am still looking and trying and hoping to find some relief for her.

 

[caledonia]

Yes, i have that. It feels like having the flu but the thermometer shows a low-normal temperature. When i do have a normal-high temperature (still within boundaries for normal people) i feel like death.
It's accompanied by a 24/7 drunk feeling and a hangover at once.

I have had every test and treatment possible for bacterial and viral infections, nothing has helped. The only possibility left is autoimmunity.

The low normal temperature thing is a result of thyroid and/or adrenal issues. For example, back when I had autoimmune thyroiditis, my temperature was 96.8F (instead of 98.6F). Nowadays, it's 98.2F.

Once again, getting out that last mercury filling was a turning point for this - my autoimmune thyroiditis cleared, and my adrenals got about 50% better (although I still have adrenal fatigue), and my temperature rose.

If your temperature goes above "your" normal temperature, and you feel like you have a fever, you have a fever, even if it's not above 98.6F.

You can do Dr. Rind's temperature graph to see if you have thyroid and/or adrenal issues.

 

[Avenger]

I also had Flu like symptoms, I also described them sometimes as an infection or even feeling as though I had been poisoned (which I now realize I had been).

I now have a diagnosis! I had been ill with systemic neurological symptoms and had been told that I had ME, CFS and even Fibromyalgia. I was diagnosed with D-Lactic acidosis secondary to Bacterial Overgrowth in February 2017. I have also diagnosed with Mitochondrial Dysfunction and mild Immune Dysfunction.

I am now under a Consultant and have been given a diet free from Carbohydrates and Simple Sugars. I have also been prescribed monthly cyclical antibiotics, but do not need them unless I fail the exclusion diet (Dr. Sarah Myhill has some good free advice and is treating all her ME/CFS patients with a Stone Age Diet. But please consult your Doctor before trying the diet to make sure that it is safe for you).

All symptoms including Flu or infection like symptoms, and other often serious symptoms have all abated. I also had periods of Hypoglycemia or Reactive Hypoglycemia symptoms and a number of Gastrointestinal symptoms which have all also stopped. I do still get some PEM but I had been ill for a long time.

My own belief is that there may be a number of different forms of Bacterial Overgrowth that produce different metabolites that are toxic, as is D-Lactic acidosis. IBS is a milder form of Bacterial Overgrowth.

I have included an abstract that has found D-Lactic producing Bacteria in CFS patients.

Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome.
Sheedy JR1, Wettenhall RE, Scanlon D, Gooley PR, Lewis DP, McGregor N, Stapleton DI, Butt HL, DE Meirleir KL.
Author information

Abstract
Patients with chronic fatigue syndrome (CFS) are affected by symptoms of cognitive dysfunction and neurological impairment, the cause of which has yet to be elucidated. However, these symptoms are strikingly similar to those of patients presented with D-lactic acidosis. A significant increase of Gram positive facultative anaerobic faecal microorganisms in 108 CFS patients as compared to 177 control subjects (p<0.01) is presented in this report. The viable count of D-lactic acid producing Enterococcus and Streptococcus spp. in the faecal samples from the CFS group (3.5 x 10(7) cfu/L and 9.8 x 10(7) cfu/L respectively) were significantly higher than those for the control group (5.0 x 10(6) cfu/L and 8.9 x 10(4) cfu/L respectively). Analysis of exometabolic profiles of Enterococcus faecalis and Streptococcus sanguinis, representatives of Enterococcus and Streptococcus spp. respectively, by NMR and HPLC showed that these organisms produced significantly more lactic acid (p<0.01) from (13)C-labeled glucose, than the Gram negative Escherichia coli. Further, both E. faecalis and S. sanguinis secrete more D-lactic acid than E. coli. This study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications.
Full Text Available.

Paul.