• 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.

Complete remission of symptoms when I have hay fever - anyone else had this?

Messages
3,263
Hi there,

This is my first post, although I’ve been following the forum for a few years now. I felt moved to write myself because I’ve noticed something important about my CFS that might be of use to other people.

Here it is: When the pollen is high here in New Zealand in the spring, and my hay fever kicks in, I remain well the entire time till it passes. In fact, during this hay fever period, I can even do quite strenuous exercise (1 hour walks daily). In fact, if not for the hay fever itself (runny nose, drowsiness etc.), I’d even say my health is 100% back to normal. As soon as the hay fever passes, things go back to crap again. If I could only bottle whatever pollen is causing the hay fever, I’d have my own personal cure!

Its as though the hay fever has a some sort of protective effect, as though it induces some change to my immune system that is helpful.

This goes against everything I’ve read about the mechanisms responsible for CFS symptoms (e.g. Th1 underresponsiveness and bias toward Th2 responding). The only stuff I could find to help make sense of it comes from recent stuff about the positive functions of mast cells, which we know are implicated in hay fever: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3343118/. But I’m making a huge jump here, it might not even be about the mast cells.

Has anyone else here noticed an improvement in their CFS symptoms while experiencing seasonal hay fever? Its the last thing any of us would expect, but in my case, I’m absolutely certain of the connection. Perhaps some of you have experienced it, but never thought it was important?

(Superquick summary of my CFS: Began with an unspecified severe acute viral infection in 1990, diagnosed with CFS by specialist physician in Australia in 1993, my CFS follows a relapsing/remitting pattern, with really bad phases (low grade fever, severe flu like symptoms, viral headache, unable to move), interspersed with relatively good ones (light fatigue, have to take care what I do). I tick all the CCC boxes except the neural symptoms, which I don’t get at all).

Woolie
 
Messages
61
Location
Germany
Well then buy the stuff, put it in a jar and sniff it 3 times a day. :p
I found some pollen on the net for 25€ per kg.

The mechnism by which you are feeling better is most certainly immunological. Finding the exact biochemical explaination will be nearly impossible though :/

mfg
EDIT:
this might be related:
Indoleamine-2,3-dioxygenase
 
Last edited:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
In my case since Ive had ME my hay fever has been a lot better... vanished. I used to have it all the time as a child and in my early 20s (before ME), now I basically never get it (may have an odd bout of it once a year if that.. my issue now is dust mite and molds).
 
Messages
3,263
Thanks, Gandalf, I'll definitely chase up your suggestion (only wish I could just buy that bottled stuff too - but I expect it has to be the right pollen at the right time and be airborne in just the right way... why is nothing ever easy with this disease?!)

Taniaaust1: very interesting that you don't get hay fever any more... hmmm... maybe the link is the other way round - my remission happens first, my immune system gets a boost, then the hay fever comes back.

There definitely seem to be very different mechanisms in different allergies, so doesnt surprise me at all to hear you are +++dist mite/mold allergies and ----seasonal pollen allergies!
 

Seven7

Seven
Messages
3,444
Location
USA
@Woolie Your observations are correct. I have the same phenomena but when I get a cold. I have immune issues and they put me in a immune modulator ( low NK cell, low Tcell, High Bcell, Inflammatory cytokines high). That is a clue for you that something isn't right on your immune system.
 

Aileen

Senior Member
Messages
615
Location
Canada
In my case since Ive had ME my hay fever has been a lot better... vanished. I used to have it all the time as a child and in my early 20s (before ME), now I basically never get it (may have an odd bout of it once a year if that.. my issue now is dust mite and molds).
. Me too. ME came and hayfever left. However, I now have all kinds of other sensitivities (non IgE) to odours, foods, temperature etc... That's a lot worse.

Lately I've been experimenting with old anti-histamines in the same class I took as a kid. Those are the first generation H1 blockers. Tried one that seemed ok at first but then I thought gave me headaches. Once this bitter cold snap is over I'm going to try the children's Dimetapp liquid I took as a kid. Who knows?

Never thought I'd say this, but as miserable as hayfever is, please give it back to me!!! (provided I get rid of the other stuff, of course)
 

DanME

Senior Member
Messages
289
Hi,

I made a similiar observation. Everytime I get a cold or another infection (often a pharyingitis), my ME symptoms nearly vanish and I feel much, much better. Though I feel ill from the cold and quite fevery, I am able to walk around for hours, able to enjoy shopping and housework and are suddenly very talkative (good bye brainfog). After the cold is gone, all my ME symptoms reappear and I feel crappy again. That is how bad ME is, feeling fevery, common cold-like tired or having severe pain from a sore throat feels like paradise against brainfog, OI and all the other hellish ME symptoms.

So what happens to the body? We can only speculate. Probably the body changes the concentration of a lot of cytokines, hormones as well as other transmitters in order to fight the incoming infection. The human immune system is so heavily complicated, I doubt any scientist could truly explain the phenomenon. If ME (or versions of it) is a kind of autoimmune disorder (which I strongly believe), maybe the immune system is distracted from attacking the body, if it has to fight another pathogen. There are some hints, that this is the case in other autoimmun disorders as well. For are example, there are studies, in which they cured Chron's disease with some harmless worms. The body started to fight the worms and 'forgot' to attack the gut. On the other hand, sometimes AI disorders like MS can be worsend through other infections.

It always gives me a lot of hope to get a cold. It is evidence that my ME symptoms are not permanent and reversible. If only somebody would find the key to unlock this mystery.

(sry for mistakes. english is not my mother tounge)
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Hi there,

This is my first post, although I’ve been following the forum for a few years now. I felt moved to write myself because I’ve noticed something important about my CFS that might be of use to other people.

Here it is: When the pollen is high here in New Zealand in the spring, and my hay fever kicks in, I remain well the entire time till it passes. In fact, during this hay fever period, I can even do quite strenuous exercise (1 hour walks daily). In fact, if not for the hay fever itself (runny nose, drowsiness etc.), I’d even say my health is 100% back to normal. As soon as the hay fever passes, things go back to crap again. If I could only bottle whatever pollen is causing the hay fever, I’d have my own personal cure!

Its as though the hay fever has a some sort of protective effect, as though it induces some change to my immune system that is helpful.

This goes against everything I’ve read about the mechanisms responsible for CFS symptoms (e.g. Th1 underresponsiveness and bias toward Th2 responding). The only stuff I could find to help make sense of it comes from recent stuff about the positive functions of mast cells, which we know are implicated in hay fever: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3343118/. But I’m making a huge jump here, it might not even be about the mast cells.

Has anyone else here noticed an improvement in their CFS symptoms while experiencing seasonal hay fever? Its the last thing any of us would expect, but in my case, I’m absolutely certain of the connection. Perhaps some of you have experienced it, but never thought it was important?

(Superquick summary of my CFS: Began with an unspecified severe acute viral infection in 1990, diagnosed with CFS by specialist physician in Australia in 1993, my CFS follows a relapsing/remitting pattern, with really bad phases (low grade fever, severe flu like symptoms, viral headache, unable to move), interspersed with relatively good ones (light fatigue, have to take care what I do). I tick all the CCC boxes except the neural symptoms, which I don’t get at all).

Woolie

I have a related phenomenon, which is that as my ME symptoms improved on a leaky-gut diet, I reacquired the allergy to wool (nothing personal!) that I had before becoming ill and which I had forgotten about.

I did some searching on the possible reasons, and found this abstract which could explain it.

Whilst other studies have not found lower IgE levels in ME/CFS than in controls, we definitely do have abnormal immune systems, and may vary between subgroups on which types of abnormality we have.

So could it actually be that you become susceptible to hay fever when your ME/CFS is less severe, due to changes in your immune activity, rather than the pollen or hay fever improving your ME/CFS? (Have just read other posts now that say similar!)

BTW I too felt much better when I had a cold, but then stopped getting them. :(

Then recently I felt like I was getting a cold or flu again. It gave me hope!
 
Last edited:
Messages
3,263
Thanks for the interesting article, MeSci! Yes, I do think it coudl be the other way around - better health, then hay fever. But there's still another explanation, and that is that the normal hay fever response, if your body is able to mount it, helps stimulate some sort of immune activity that is protective.

What people are saying here about light colds is fascinating. Again, it could be people only get light colds when they are in better immune shape. But, it could also be the other way around too - the immune reaction you get with a mild cold, if your body is able to mount it, protects against reactivation of latent virus(es). (that's taking a latent virus view of CFS, which I guess is just my opinion, but definitely seems the best account for the relapsing/remitting type of CFS).

My mum, who's an immunologist, once told me that normal folks can never have two acute viral infections at once. It just can't happen, because the response you mount to the first creates an extremely hostile environment for any others.

For, us, the take home message is if we can mount an immune reaction to something relatively unthreatening (so, not overly stressful to our immune system itself), then that might help create an unsympathetic environment for viral reactivaton.

Inester7: Great to hear I'm not alone on the hay fever thing! Can you tell me anything else about what happens when you get the hay fever?

Woolie
 

ukxmrv

Senior Member
Messages
4,413
Location
London
What happens in HIV infection then Woolie (your Mum's idea about 2 viral infections). People infected with HIV that I knew in the 80's displayed the purple lesions of Kaposi's Sarcoma which we now know was caused by a Herpes Virus.

I've also had friends with ME who have been tested for Shingles and EBV at the same time and are told titres are high in both. I've had high titres to EBV and CMV at the same time.

We just aren't normal I guess. Makes me wonder how many other "abnormal" groups there are out there.... Then again where has research been carried out that would prove her theory.

My experience is that I only developed hayfever (and severe reactions to things like prawns) when I developed ME after an acute viral infection. Bouts of hayfever don't have any noticeable effect on my ME so it's not protective and my ME doesn't get better with a cold.

I went from being a "catch nothing" patient to a " catch everything" still badly disabled with my original ME symptoms.

Patients have often asked for more research to be carried out on pregnant woman who have CFS or ME. Some are better, some worse and some stay the same. It may be a similar mechanism here.

ME patients have also looked at fringe treatments like bee stings to try and improve their symptoms. Not heard of any cures from this but there are always a few people who get better with anything.

Maybe your Mother would be in a position to get some bloods done on you that show what your immune system is doing differently when you have hayfever?
 
Last edited:
Messages
3,263
Hi ukxmrv, I think my mum's principle applies only to acute viral infections. You have to be mounting an acute response to a new viral pathogen at the time for it to be protective against other viral infections. So chronic HIV, EBV XMRV, CMV, HHV etc. infection wouldn't do it.

Wish my mum could help with bloods, but she's retired now :(

What you describe - increased allergic responses after ME - seems to be the most commonly reported pattern. Can I ask: Is the hay fever you describe seasonal (spring/early summer, when pollen count is high)? Does it get worse, for example, when you walk or lie in long grass? Does it respond to hay fever medication (antihistamines, teldane/telfast?) I wonder if different allergies have different mechanisms...

And yes, what you say about some things working for some and no for others is sobering. I was horribly ill during pregnancy.

I'm actually quite keen on the bee sting idea - has anyone tried it?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hi Woolie,

Yes, it is seasonal pollen hayfever. Grass is one of the triggers. Springs and summers are a misery for me but I have been better after going through a long treatment course of EPD at the Homeopathic Hospital in London.

I also developed an allergy to cats after the onset of ME. Dust allergy before ME. Stings from bees and insects swell badly.

I do have some limited help for the allergies from antihistamines but even the "non-drowsy" ones can put me to sleep. Been experimenting for decades now and take Clarayine in the Spring/summers at the moment. Doesn't help with ME symptoms. Sudafed is good for me but I am guessing that is the pseudoephedrine helping the POTS.

Benadryl is what some doctors are suggesting for IRIS type reactions (like when I took MAF314) and Daosin.

http://www.allergyuk.org/a---d/daosin

My family is very allergic though and has been for generations. We also have ME in both blood relatives and the in-laws.
 

Hip

Senior Member
Messages
17,824
@Woolie

At first glance, the fact that your hay fever temporarily puts your ME/CFS into remission does not make sense, in terms of the Th1 / Th2 theory of ME/CFS.

You can see in this study that the Th2 response (as measured by the IL-4/IFN-gamma ratio) gets stronger in the pollen season. This if anything would be expected to make your ME/CFS worse, since ME/CFS is underpinned by a undesirable shift towards Th2, and remission from ME/CFS is associated with a shift back towards Th1.

However, the cited study also states that granulocyte-macrophage colony-stimulating factor (GM-CSF) was increased during the pollen season.

Now it just so happens that GM-CSF has antiviral effects (see here and here).

So I wonder whether this GM-CSF may be responsible for your ME/CFS remission, a result of the GM-CSF fighting off your viral infections.

If so, perhaps we should all be snorting pollen grains into our noses to try to provoke hay fever!
 
Messages
3,263
Thanks, ukxmrv, yep, that sounds jut like mine.
It sure is puzzling, how different all our reactions are. Maybe that's the whole problem with this disease - finding stuff that works is damn near impossible, as what works for one doesn't work for another.
 
Messages
3,263
@Woolie

At first glance, the fact that your hay fever temporarily puts your ME/CFS into remission does not make sense, in terms of the Th1 / Th2 theory of ME/CFS.

You can see in this study that the Th2 response (as measured by the IL-4/IFN-gamma ratio) gets stronger in the pollen season. This if anything would be expected to make your ME/CFS worse, since ME/CFS is underpinned by a undesirable shift towards Th2, and remission from ME/CFS is associated with a shift back towards Th1.

However, the cited study also states that granulocyte-macrophage colony-stimulating factor (GM-CSF) was increased during the pollen season.

Now it just so happens that GM-CSF has antiviral effects (see here and here).

So I wonder whether this GM-CSF may be responsible for your ME/CFS remission, a result of the GM-CSF fighting off your viral infections.

If so, perhaps we should all be snorting pollen grains into our noses to try to provoke hay fever!

Thanks so much Hip, for taking the time to pass this on. I've read about the Th1<<Th2 model of CFS, but the GM-CSF research is totally new to me, and a way better explanation than my mast cell one. And I now have a paper trail to follow.

Will post back if I find out anything more.

I like the pollen snorting idea, just don't know exactly how to make it happen...

So far, though, the hay fever remission thing only works for me and Inester7. Others have mentioned their hay fever response has declined, and for ukxmrv, it has got worse with no upside. .. still keen to hear about anyone else's experience.


Woolie
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
ME patients have also looked at fringe treatments like bee stings to try and improve their symptoms. Not heard of any cures from this but there are always a few people who get better with anything.

That comment just reminded me of a ME/CFS guy I spoke to years ago who told he'd taken up hitting himself all over with stinging nettles as the reaction they invoked, caused his symptoms to disappear.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I'm actually quite keen on the bee sting idea - has anyone tried it?

Maybe a more humane treatment would help, such as stinging nettles. There's some info here:

http://www.eclecticphysician.com/archive.php?action=Nbr&Nbr=226

(I haven't checked out the bona fide of the site, but the info looks generally sensible.)

Here's an article about nettles for arthritis:

http://news.bbc.co.uk/1/hi/health/771563.stm

and more info here:

http://umm.edu/health/medical-refer...ternative-medicine-guide/herb/stinging-nettle

NB people need to be careful with bee stings and nettles in case they are seriously allergic to them.

PS just seen @taniaaust1's post! :D
 

Hip

Senior Member
Messages
17,824
Thanks so much Hip, for taking the time to pass this on. I've read about the Th1<<Th2 model of CFS, but the GM-CSF research is totally new to me, and a way better explanation than my mast cell one. And I now have a paper trail to follow.

Will post back if I find out anything more.

I also think your mast cell idea is highly promising as a possible explanation for the hay fever-induced remission in your ME/CFS.

In the study you cited above, it says:
"Mast cell activation by synthetic viral dsRNA led to the recruitment of CD8+ T cells to the site of infection that was absent in mast cell–deficient mice. Dengue infected mast cell–deficient mice had an increased viral burden within draining lymph nodes due to the lack of recruitment of NK and NK T cells to the site of infection".

So mast cell activation has an antiviral effect, and it is conceivable that mast cell activation triggered by a pollen allergy may act to fight off the viral infections of ME/CFS.


Furthermore, this study shows that mast cells can be activated by viral double stranded RNA (dsRNA), and they respond by producing type I interferons (like interferon-alpha, beta, and delta). Type I interferons help destroy viral RNA.

Dr Chia thinks that persistent non-cytolytic enteroviral infection of dsRNA and ssRNA in our cells may play a major role in ME/CFS, and so anything that helps destroy this RNA should help ME/CFS.

So... going back to mast cell activation by pollen allergy: one might speculate that if mast cells are being stimulated by a pollen allergy, this may conceivably also make these mast cells more sensitive to the presence of enteroviral dsRNA in our cells, and so elicit a greater release of type I interferons from these mast cells when they encounter this enteroviral dsRNA.

In other words, the pollen allergy may place the mast cells in a "battle stations" mode, so that these mast cells then produce a fiercer antiviral interferon response against the enteroviral RNA in our cells.

This of course is all very speculative. But if it were true, it suggests that ME/CFS patients might benefit from stimulating their mast cells, in order to get these cells to produce the type I interferons that can wipe out the viral RNA that Dr Chia believes may underpin ME/CFS.

Though note that generally people try to prevent mast cell activation, and in fact there is a whole sub forum on this site devoted to inhibiting mast cell activation.
 
Last edited:

Hip

Senior Member
Messages
17,824
I like the pollen snorting idea, just don't know exactly how to make it happen.

You can buy bee pollen grains as a dietary supplement. These grains look like this.

I would imagine that if you bought some of these grains, and then crushed them into a fine power, you could snort this powder into your nasal cavities via a wide drinking straw or similar.

Whether this would create the desired allergic response probably depends on what type of pollen the bees have collected. Hay fever can be caused by grass, flower or tree pollen. If it is possible, you might try to find some bee pollen originating from New Zealand, as this will more likely to contain the species of pollen you are allergic to.

I would use a very small amount of this pollen when you test it initially by snorting, in case it produces a strong allergic response.

"From March to May, pollens from trees are the most common cause. Trees, mould spores and weeds can also cause hay fever. From May to July, grass and flowers are in pollen, making these the most common cause of hay fever at this time."
Source: here.
I know you are in New Zealand, so your seasons are going to be six months out of sync compared to the UK.
 
Last edited:

Seven7

Seven
Messages
3,444
Location
USA
I do not get hey fever as often anymore (not sure if you meant other use). I do get one day mild colds.

I only get hey fever when I eat bananas. I think strawberries also, I am experimenting to make sure on the strawberries. is 100% of the cases with banana.