Why am I getting worse...viruses? Mould? Your thoughts!

[Mariposa]

Hello everyone,

I'm new to the forum (though I've been reading quite a lot).

I was wondering if anyone had any thoughts on what might be going on with me. I've been seeing a functional nutritionist for over a year now. For the first 6 months I was making slow but gradual progress, little by little, but then I got food poisoning and it was downhill from there. My gut was messed up (I had a bit of IBS before anyway), my sleep got worse, tested positive for SIBO, and have been on a protocol for that ever since - antimicrobials and diet. My gut has much improved, there is still a bit to go, but it's getting there.

However, my energy is so much worse. I've gone from being able to go out for up to 3 hours per day to being more or less housebound. Since about August last year, I seem to keep getting what I think are viruses, but it's so subtle, like I'll just have the tiniest of sore throats or maybe cough just once in a day, you can barely tell there's anything wrong, except I'm SO much more tired for no reason- suddenly I can't shower or get dressed, feel like I've been hit by a bus, etc etc. This lasts for days or weeks, and then I'll have a few days or weeks when I feel a little better, and like maybe this is it and I'm starting to improve again, and then another one hits me. This just goes on and on. As I understand, that's part of the ME - when your immune system is so overwhelmed that you don't get the normal symptoms of a cold/virus (I had a full on cold before I got the food poisoning, I was so happy!!) But it's just happening so often now, I can't believe it.

What do you think would be useful to do now? I feel like I'm stuck in such a rut and can't get out, and pretty disheartened with it all given all the work I've done to get well (including a whole lot of relaxation/calming the nervous system stuff). My nutritionist has suggested testing for viruses and mould toxicity (I lived in a room with black mould for a year in 2013, before I got ME), and hopes that healing the gut will make me stronger. She also mentioned Lyme, but these are all incredibly expensive and it's already been a year of paying for tests and supplements that are so pricey - I thought I would at least be improving by now, not worse.

Does anyone have any thoughts on what to prioritise, or if I'm missing anything?!

 

[Timaca]

This year, after getting a cold from my grandson, I've decided to be a bit more aggressive. When I feel the tiniest cold starting, I take some Airborne (I break the tablet in 4 pieces and take it throughout the day). I also take a zinc throat lozenge. I started doing those things again today as I noticed a slight runny nose and I don't want to get sick!!

The other thing I do to help my immune system (besides eating LOTS of fruit and vegetables) is watch humor on YouTube. Laughter is supposed to be good medicine so I'm giving that a try!!

I wish you better days soon!

 

[Hip]

For the first 6 months I was making slow but gradual progress, little by little, but then I got food poisoning and it was downhill from there.

Are you sure it was food poisoning (was it diagnosed by a doctor with bacterial testing)? Because enterovirus infection can cause a gastrointestinal upset as well, and enterovirus is of course linked to ME/CFS.

My nutritionist has suggested testing for viruses and mould toxicity (I lived in a room with black mould for a year in 2013, before I got ME),

There is an illness that Dr Shoemaker called CIRS (chronic inflammatory response syndrome) that can be caused by toxic mold. There is now one Shoemaker-trained doctor in the UK.

Dr Joseph Brewer thinks ME/CFS patients may have a mold infestation in their nose, and treats with an antifungal nasal spray. This thread might interest you.

 

[jason30]

I recognise the symptoms, hit by a bus, from a virus. What helps me a lot is liposomal vitamin c and lysine for the (EBV?)virus. Monolaurin works as well.
I have CIRS (and probably lyme as well) and detoxing is very important. In addition to the post of Hip, you might want to consider taking binders (to escort the toxins out of your body) and liver support.

 

[LINE]

Testing for pathogens can be hit or miss, I ran into this problem and decided to forget the testing and go with broad spectrum natural antibiotics, ones that can have broad killing ability. Things that would be in this class would be garlic, black seed, caprylic (or monolauric) acid, neem, lemongrass, thyme, goldenseal leaf (not root), hemp oil which is a powerful one (this is just hemp oil, the kind you can buy at Whole Foods etc).

 

[LINE]

I recognise the symptoms, hit by a bus, from a virus. What helps me a lot is liposomal vitamin c and lysine for the (EBV?)virus. Monolaurin works as well.
I have CIRS (and probably lyme as well) and detoxing is very important. In addition to the post of Hip, you might want to consider taking binders (to escort the toxins out of your body) and liver support.

Perfect, this is what got me out of the hole (addressing toxins and pathogens).

 

[poetessinmotion]

Thank you for writing this, @Mariposa, I'm exactly in the same place right now. 10 days ago I was enjoying my best two weeks in one year and then my period came together with a pharingitis and I'm back to housebound again with little activity.

Other symptoms that are back for me are very low blood pressure again (7/4 this morning, 8/4 right now even with pregnenolone and adrenal cortex) and worsening of hypoglycemia, which I'm having randomly no matter what I eat. I wonder if viruses mess up my HPA axis even more.

Thinking about adding lysine, reishi, colostrum. Also Florinef, that has been prescribed by my neurologist recently.

Which binders are a good option for ME? I also live in a very humid and moldy place, and have for years. Which is the nasal spray that Shoemaker recommends?

 

[Mariposa]

This year, after getting a cold from my grandson, I've decided to be a bit more aggressive. When I feel the tiniest cold starting, I take some Airborne (I break the tablet in 4 pieces and take it throughout the day). I also take a zinc throat lozenge. I started doing those things again today as I noticed a slight runny nose and I don't want to get sick!!

The other thing I do to help my immune system (besides eating LOTS of fruit and vegetables) is watch humor on YouTube. Laughter is supposed to be good medicine so I'm giving that a try!!

I wish you better days soon!

Thanks Timaca, yes you're right, laughter is such an easy thing to forget with this illness, but so important

Are you sure it was food poisoning (was it diagnosed by a doctor with bacterial testing)? Because enterovirus infection can cause a gastrointestinal upset as well, and enterovirus is of course linked to ME/CFS.

Yes, a doctor did a stool test and it was E coli

There is an illness that Dr Shoemaker called CIRS (chronic inflammatory response syndrome) that can be caused by toxic mold. There is now one Shoemaker-trained doctor in the UK.

Dr Joseph Brewer thinks ME/CFS patients may have a mold infestation in their nose, and treats with an antifungal nasal spray. This thread might interest you.

Ahh that's really interesting and good to know, thank you and I'll check out that thread

I recognise the symptoms, hit by a bus, from a virus. What helps me a lot is liposomal vitamin c and lysine for the (EBV?)virus. Monolaurin works as well.
I have CIRS (and probably lyme as well) and detoxing is very important. In addition to the post of Hip, you might want to consider taking binders (to escort the toxins out of your body) and liver support.

Thank you, that makes sense, I'll give those go!

Testing for pathogens can be hit or miss, I ran into this problem and decided to forget the testing and go with broad spectrum natural antibiotics, ones that can have broad killing ability. Things that would be in this class would be garlic, black seed, caprylic (or monolauric) acid, neem, lemongrass, thyme, goldenseal leaf (not root), hemp oil which is a powerful one (this is just hemp oil, the kind you can buy at Whole Foods etc).

Yes it seems a bit like shooting in the dark, there are so many you can get tested for...thank you that's useful to know

Thank you for writing this, @Mariposa, I'm exactly in the same place right now. 10 days ago I was enjoying my best two weeks in one year and then my period came together with a pharingitis and I'm back to housebound again with little activity.

Other symptoms that are back for me are very low blood pressure again (7/4 this morning, 8/4 right now even with pregnenolone and adrenal cortex) and worsening of hypoglycemia, which I'm having randomly no matter what I eat. I wonder if viruses mess up my HPA axis even more.

Thinking about adding lysine, reishi, colostrum. Also Florinef, that has been prescribed by my neurologist recently.

Hope you feel better soon @poetessinmotion, I've read good things about reishi

 

[Mary]

Since about August last year, I seem to keep getting what I think are viruses, but it's so subtle, like I'll just have the tiniest of sore throats or maybe cough just once in a day, you can barely tell there's anything wrong, except I'm SO much more tired for no reason- suddenly I can't shower or get dressed, feel like I've been hit by a bus, etc etc. This lasts for days or weeks, and then I'll have a few days or weeks when I feel a little better, and like maybe this is it and I'm starting to improve again, and then another one hits me. This just goes on and on. As I understand, that's part of the ME - when your immune system is so overwhelmed that you don't get the normal symptoms of a cold/virus (I had a full on cold before I got the food poisoning, I was so happy!!) But it's just happening so often now, I can't believe it.

That sounds very similar to what I've gone through for several years. My outward symptoms will be very mild, barely noticeable to anyone else, generally a little bit of congestion and maybe a tiny sore throat, but they're accompanied by horrible fatigue just as you decribe. I think it's a combination of a virus and strep.

A few years ago I discovered that the herb andrographis is very helpful for my immune system. I get sick every time I crash, and I generally crash at least once a weeks, so I would be sick literally almost all the time. As soon I might start to recover I'd crash again and start all over.

Andrographis is an immune modulator. Since I've started taking it, I get much less sick and I recover more quickly. Sometimes if I seem to need it, I will add in echinacea and goldenseal and it generally knocks out the bug. And once in a great while, if a sore throat is particularly troublesome, I'll use colloidal silver.

I take andrographis almost daily, 2 caps a day though when sick will take more. I'll take a break every few weeks (I'm not scientific about it!) I found out about it from my sister (who does not have ME/CFS). A few years ago she had a severe sinus infection that went on for weeks. Two courses of ABX only helped a little. Finally her NP gave her an herbal combo, the chief ingredient of which was andrographis and within 2 days she was 85% better. It was amazing. So I've been taking it ever since.

I also take l-lysine, vitamin D3, lots of vitamin C.

 

[Rufous McKinney]

Are you sure it was food poisoning (was it diagnosed by a doctor with bacterial testing)? Because enterovirus infection can cause a gastrointestinal upset as well, and enterovirus is of course linked to ME/CFS.

In the last two years I've had like four bouts of Norovirus-like terminal near death stomach flu which is NOT food poisoning. And despite the ER visit last July, I managed to leave without an actual real diagonosis: this is my fate it seems. Why diagnose her, she is not deserving or something.

So I"ve starting to really wonder if Norovirus type something is living in my intestines and is flaring into acute episodes caused by: the things that give us acute episodes of ME.. Each time: I think I will soon be dead. This cannot continue.

 

[Rufous McKinney]

I recognise the symptoms, hit by a bus

For years, I called it: run over by the football team. Its what I feel like after, say 35 big strong guys trampled your personage plus they are wearing cleats.

 

[Rufous McKinney]

However, my energy is so much worse.

Feeling worse, despite ALL THAT: is so frustrating here as well. This last year has really sucked.

Why, when it seems like maybe you got one part of this to do better (for me, that was IBS)....huge major dietary restrictions consistently applied, I've gone with some noticeable improvement and would now like to believe I have absorbed SOME NUTRIENT, yet? Not better.

Fewer and fewer occasional moments of: not totally ill.

And yesterday I got angry, I will just admit that I got really angry: watching the Golden Girls You Tube Clip, the outrage that was 1991, and its 2019, and still they say: they need to find a biomarker. YEs AWARENESS has increased tremendously: so I will try to hang on, a little longer. Reading about Kaiser Permanente, going with the PACE protocols...thats what actually made me really really mad. Apparently my insurance preferred to continue the: just ignore those people, approach. So nobody told me to take a hike.

And if they had? I'd have told them to: TAKE A HIKE

Of course, they told me to take the pill (anti-depressant). Then yes: they lied about side effects. While "staring".

 

[Hip]

In the last two years I've had like four bouts of Norovirus-like terminal near death stomach flu which is NOT food poisoning. And despite the ER visit last July, I managed to leave without an actual real diagonosis: this is my fate it seems. Why diagnose her, she is not deserving or something.

So I"ve starting to really wonder if Norovirus type something is living in my intestines and is flaring into acute episodes caused by: the things that give us acute episodes of ME.. Each time: I think I will soon be dead. This cannot continue.

It's enterovirus which is normally linked to ME/CFS, rather than norovirus (in the medical literature I've never come across anyone developing ME/CFS after a norovirus infection, but enterovirus is strongly linked to ME/CFS).

Chronic enterovirus infection of the stomach is common in ME/CFS (see Dr Chia's research), but this tends to be an ongoing low-level infection. I have not come across cases where it flares up again and becomes as ferocious as the original acute infection when you first caught the virus.

So it's hard to say what's going on in your case. I guess you could have caught several new viruses each causing stomach flu (viral gastroenteritis).

I don't know if IgG deficiency could cause such flare ups?

 

[Belbyr]

I need to follow this thread, gastro issues are 80-90% of my issue. I am trying to figure out how to send my endoscopy biopsies to him(Dr Chia) to check for enterovirus. I have low IGG and low IG subclass 1 and 3. I feel like I have a chronic stomach flu. My coxsackie Igg was elevated 5x higher than a healthy person's.

 

[Hip]

I am trying to figure out how to send my endoscopy biopsies to him(Dr Chia) to check for enterovirus.

The form for Chia's stomach biopsy test is here. It also includes instructions to the gastroenterologist on how to take those biopsies.

 

[Mariposa]

Andrographis is an immune modulator. Since I've started taking it, I get much less sick and I recover more quickly. Sometimes if I seem to need it, I will add in echinacea and goldenseal and it generally knocks out the bug. And once in a great while, if a sore throat is particularly troublesome, I'll use colloidal silver.

I take andrographis almost daily, 2 caps a day though when sick will take more. I'll take a break every few weeks (I'm not scientific about it!) I found out about it from my sister (who does not have ME/CFS). A few years ago she had a severe sinus infection that went on for weeks. Two courses of ABX only helped a little. Finally her NP gave her an herbal combo, the chief ingredient of which was andrographis and within 2 days she was 85% better. It was amazing. So I've been taking it ever since.

I also take l-lysine, vitamin D3, lots of vitamin C.

Sorry I’d missed this reply! Thanks Mary, that sounds brilliant, I’m going to give it a go