Am I imagining this ?

[James472]

Hi @EllieM

No, have never been tested for allergies, and right now, I'd be very keen to see which ones I pass / fail. I think I might start lighting their system up right now with seriously flashing lights !

But I guess, that's one of the things I'm beginning to think - that maybe some of our recognised allergies might actually be connected back to this soup mix I'm talking about - e.g. maybe, just maybe, our understanding of pollen allergies, is more that pollen attaches to our clothing while out and about, which possibly hosts dust mites, and we will definitely bring in pollen and garden material underfoot onto the hall rug or carpet. Like I say, it's only theory, but lots of things have to start with a theory.

See, I've never had any specific problems with Lantus, and I was using it for quite a long time. It's just that right now, doing what I'm doing with trialling the Eucalyptus effect etc., basal could kick me, and I don't need any extra problems.

If I can't get any further with the investigations into this, and I'm stuck with this, then I'll have to consider other options, such as pump therapy, and I'm confident the Diabetic team would help all they could. If the modern pumps are capable of linking to the CGM and backing off the dosing when bloods drop, then that could be the perfect answer. But like I say, running on high dosage numbers at the moment.

I don't even see this as a simple insulin resistance - because it see-saws all the time. Sometimes there is no resistance as such, and I've long ago played with the possibility of injection sites etc., and found no correlations there.

For the moment, I'm focussing on the fact that utilising Eucalyptus oil seems to have significant effects, and Eucalyptus (& Lavender & Tea Tee) Essential oils are all known to halt dust mites. And the fact that nasal rhinitis and escalating bloods too often seem to be hand-in-hand.

And I'm pretty certain Demodex mites are part of the bigger equation as well !

Thanks @EllieM

 

[lovinglife]

Be careful with the essential oils - they may be natural doesn’t mean they are innocuous , they can still cause problems with overuse, some quite nasty - including breathing problems. Essential oils are not regulated like medicines are.

Just an example from personal experience, I have psoriasis and evening primrose oil is recommended by my dermatologist to help control it, but I can’t use it as hubby has epilepsy and Evening Primrose Oil can bring on seizure’s

Essential oils – Health warning

Essential oils are any plant-based, volatile oil that contains a mixture of chemical compounds and have an aroma characteristic of the plant. Commonly used essential oils are eucalyptus oil, clove oil, tea tree oil and aromatherapy oils.

www.healthywa.wa.gov.au

 

[Fenn]

I have tried stopping basal, took me an age to get thing back to “normal” the hospital put me on Bolus only pump a few years ago and that also made a mess of my bg, I was just in the 30s all the time. I hate that your doing that but I like that you are trying to figure yourself out so who am I to say what’s right for you, interesting thread, best of luck.

 

[urbanracer]

Hi @James472

For the past year or so, I have been waking up with a blocked nose and high blood glucose levels (+18mmol/L) but had not made any correlation between the 2 symptoms.

Recently, both have eased. And now that I've read your messages and had a chance to reflect on the situation, one thing that's changed is that Mrs Urb' bought new pillows a few weeks ago.

So whilst I'm cautious of making a cause-and-effect type claim here, my experience may lend some credence to your hypothesis.

Not specifically about dust mites but there is some interesting evidence on-line relating allergies to glucose to raised levels.

 

[ajbod]

Change your pillows to anti-allergy ones, fit an anti-allergy mattress cover. Ensure you vacuum thoroughly with a full hepa vacuum. Carpets are far better for allergies and asthmatics than hard flooring, (they act as a filter, and if your problems are very bad, should be cleaned at least twice a year with a good anti bacterial agent added), UNLESS the hard flooring is mopped at least 5 times a day. That's the line the advertisers left off when claiming laminate was healthier than carpet. But the carpet must be cleaned at least annually.
Sweden started the laminate craze, and saw asthmatic levels rise 400% in 3 years, Germany saw the same effect. Both countries then went almost exclusively to carpeted floors. The British asthma society, didn't believe johnny foreigner could possibly know better than them, so ignored the research done in each of those countries.
Have you moved your bed and thoroughly vacuumed under it, especially the headboard end, i have cleaned carpets for a living for nearly 30 years, and you would be horrified with the amount of fluff and mold spores i see under beds.
Where everyone goes wrong is the carpets filters the air in the house, but they don't get the filter cleaned, that's when the allergies really hit home. Your vacuum however good or expensive, can reach only so far down into the carpet, my very expensive machine easily reaches the backing. Allergy problems have increased dramatically since people started moving away from carpet.

 

[Grace04]

There are quite a few articles out there on allergies and diabetes. This is just one of them.

Treatments to relieve allergy symptoms may impact blood glucose

Get relief and stay safe during allergy season.

www.canr.msu.edu

 

[In Response]

People on pumps DO use basal
We do not use long acting insulin but we do have a background insulin from the constant "pumping" of fast acting insulin
I find high BG can exaggerate all sorts of symptoms including blocked or running nose regardless of any allergies. But if you think allergies are to blame, have you tried taking anti histamine?
If it was me, I would definitely resume basal insulin. And then investigate the allergies of necessary.
The other thing to remember is that you are base alot of this on a CGM. If your BG is high, a CGM becomes inaccurate - they are designed to be accurate at "normal" levels.

The absence of basal insulin makes me very concerned for you.
In addition, I am concerned by what appears to be an obsession with dust mites with no proof.
I recommend seeking medical help

 

[Jaylee]

Hi @James472

For the past year or so, I have been waking up with a blocked nose and high blood glucose levels (+18mmol/L) but had not made any correlation between the 2 symptoms.

Recently, both have eased. And now that I've read your messages and had a chance to reflect on the situation, one thing that's changed is that Mrs Urb' bought new pillows a few weeks ago.

So whilst I'm cautious of making a cause-and-effect type claim here, my experience may lend some credence to your hypothesis.

Not specifically about dust mites but there is some interesting evidence on-line relating allergies to glucose to raised levels.

Oddly, recent new firm mattress, pillows & all the other stuff too.
I’ve been forced to sleep unnaturally on my back for a couple of weeks with 3 busted ribs.
I use Lantus & Novorapid.

I’ve woken bunged up, but put that down to a cold probably caught having 10 hours in A&E? (Investigating ruptured internals.)
BGs haven’t been too bad with the odd minor hypo during the night.. (but that’s just “sick day rule” over calculation on the amount of pain I’ve been in.. & the weird cold.)

 

[JAT1]

In my opinion, if I were you, I would record a detailed investigation of how much and when insulin is taken, when and how many carbs in the food consumed, and what the blood sugar readings are before and after eating as well as before going to sleep. You may be overlooking something obvious in your ongoing battle against microscopic organisms.

 

[James472]

Folks .......... I've got a bit of work to do here, to get through all these posts ! Don't you realise you're interrupting a very intensive cleaning routine !!!

OK, so I will try and get through each post, but if I don't manage to give you as full an answer as you feel it deserves, I apologise. As always, time is a limiting factor.

@Antje77 , now you realise why I said way back at the top, that I needed to take time to decide how best to put this 'stuff' together - there was no perfect way to do it, and I may have failed in my approach ........

But let me handle the basal thing first, coz it seems to be attracting the most attention, and I never posted looking for a solution on basal. I posted because I could see some interesting trends, and I felt it was time to share what I was seeing, and I also needed more eyes on the picture. There's simply too much stuff to analyse here, for one person in one house. It really needs lab work, where you can have e.g. 5 factors, but only altering one at a time, and keep the other 4 factors stable, to observe what changes. I am doing it, but it's very time consuming, very exhausting, and there's always the risk of misinterpreting, or being subjective instead of objective.

OK ........ the basal.

I have absolutely no problem with basal - if anybody had suggested not using basal to me years ago, I'd have thought that would be dangerous, possibly very dangerous ? And I'm not recommending my approach to anyone else - please don't anyone else follow this routine. This just happens to be what I'm doing, for very specific reasons.

Having background basal is as far as I understand, a fairly standard practice in diabetes - it keeps your levels nice and steady when you're not injecting bolus doses, it covers you during the sleeping hours when levels might slowly creep upwards, and to some extent, it sometimes is even enough to allow you to have a small nibble during the day, without absolutely requiring to take a faster bolus dose until later on. No problem.

Now, I'm getting through a fresh 300 unit refill every 1.5-2 days. So it's around 180-200 units per day, and I'm pretty certain I've been higher than 200 - no kidding. Every day is pretty horrendous, but some days are just more so. So I don't think I'm over stating anything when I declare I'm having to deal with a lot of insulin. If anybody thinks I should just leave the blood glucose levels high, and not worry about chasing with extra doses, then do please step forward now, and explain your rationale.

Now, basal isn't going to reduce my insulin requirement. Basal isn't some magic wand, it's just insulin, but slower. So if I'm currently needing 180-200 units, I'll still need that, except some of it will be bolus and some basal. But that's a large amount, so proportionately, if you want basal to perform its normal function, it will need to be a sizeable dose of basal.

Except that, in my situation, where I am doing this investigative test, and from time to time, finding periods (which includes sleep times) where I get much improved flatlines, not requiring so much insulin, that starts to become more dangerous, having a large dose of basal taking me even lower through the night. Now, I know someone will say ........ oh, but you could allow the Libre to alert you during sleep etc. etc. Yes, that is a possible option, except I preferred to stay on the initial version of the reader, as I found with the newer reader, because it was communicating so much, it seemed to keep needing recharged much more often. I'm sure that's what it was, so I have the newer reader, but preferred to stick with original reader. But that doesn't matter, that's my choice. And in any case, if I was too tired, and too deep in sleep, I could miss the alert of the new reader.

I just don't want to have a large dose of basal running in the background when my bloods drop suddenly as they do when I eliminate the 'unknown issue'.

3 scenarios:

Diabetic on relatively low amounts of insulin (maybe not a heavy carb eater), and the diabetes is stable or even a little erratic, but not too much - yes, basal would be a normal part of the equation.

Diabetic on high amounts of insulin, but stable, BG readings are consistent and dependable - yes, basal would definitely be wanted, otherwise your in-between readings, and particularly your night time readings could climb to undesirable levels.

Diabetic on high amounts of insulin, but totally unstable, up and down all 24 hours long - I would suggest not upping basal too much, or you could cause more of a problem. Particularly if they can drop like a stone, the way mine do once I eliminate the source problem.

I do agree with all of you that basal is the norm, but I'm simply not running a 'norm' right now, and haven't been since March / April 2016. If I could get in a time capsule and go back, I would - I really don't want to be dealing with this.


(having some tech posting problems at the moment - not sure if I've included some kind of formatting error or something - but hopefully this one will post OK). OK, for some reason, it's not accepting my Smilies ???

 

[James472]

OK, so on the basal thing, I don't want folks thinking .......... OK, that guy just won't listen etc. etc. And sometimes in life, you need to choose which battles to take on, and you also need to sometimes (not always, but sometimes) make a compromise, so .........

To those of you who are particularly basal focussed, I'll offer this, but I would ask something of you in return (I can't demand it, but I will ask it):

To keep you happy, I will re-commence using basal. Now, if I say I will, then I will. And if at a later stage for any reason, I change my mindset, then I will come back and report that. I used to use 16 units, and when my diabetes was stable, as it always was (relatively) pre March 2016, 16 was fine. But with the levels I'm now on, there is no way I intend to raise the basal. In fact I will lower it for my own safety, down to 12 - so half a unit per hour. Oh, wait a mo .......... maybe I should make it 11 units, as Lantus only lasts approx. 22 hours ! Little bit of 'bas(al) humour there !!!

So, I will go back on basal of 12 units, and if at a later posting, someone says "I don't think you're on enough basal James", could someone else jump in and point them at the post above here ?

So, now, in return, what I'm asking is this - for those who don't believe there's anything in this hypothesis (good term @urbanracer ), could you at least try and keep an open mind for now. I'm not by nature an obsessive type, I am with this at the moment, but purely because my eyes (and nose) have been awakened to something that appears to be going on, and I'd like to get to the root of it.

OK, run out of time, but will try and respond fuller tomorrow.

@EllieM - sorry, PM'd you there as my posts were failing - is OK now, but for some reason, I can't click / include the Smiley's option ? Not a problem.

 

[Jaylee]

Hi,

I’m going to throw this into the mix on basal…

I use Lantus.
I’ve mentioned my observations on it to my endo for years, but he won’t have “it.” (Hasten to add, the Novorapid for me works great.)
So, Lantus for me (more often than not.) loses potency halfway/two thirds down the cartridge.
When this happens causing a dodgy management day. I change it the next night..

Some cartridges can go all the way…
The tail off around the 22h mark. (On a good cartridge.) Depending on my activity around that time (gigs mainly.) I can delay the basal shot by 5 hours & still cruise at 5mmol.
Other nights I can do my shot at the usual hour, go to bed & be woken at 1 or 2am low. Then it can recur an hour or 2 later..
So it looks to me like a potential “stacking” effect for 3 or 4 hours with the basal. The previous dose should have wore off along with the bolus for supper..
that's when it works.

When it don’t. I might as well have not given the dose…

I can Appreciate the topic is about a hypothesis regarding “bed bugs” causing erratic BGs.
I’ve tested a few theories myself, including pen dosage testing…

Best wishes on your quest!

 

[In Response]

So, I will go back on basal of 12 units, and if at a later posting, someone says "I don't think you're on enough basal James", could someone else jump in and point them at the post above here ?

I have read your comments and given the guidelines is that our TDD (Total Daily Dose) in made up of 50% basal and 50% bolus, I am confused what difference 12 units of basal (less than 10% of your current TDD) would make when your levels are running high.
You took 16 units in 2016 when your diabetes was stable (have I missed the part that explains why you stopped taking it?) so why take less now? I do not understand why you would take less because your bolus is high - taking basal insulin to keep your levels stable in the absence of food and exercise, should enable you to reduce your bolus. It is not in addition to your bolus but instead of some of your bolus which you are using to constantly correct your levels because you don't have any background insulin to "mop" up the glucose your liver is dripping.
Given high BG makes us insulin resistant, I understand why you would not want to take 50% of your current bolus dose but 12 units will be a drop in the ocean which I would not expect to make any difference.

I am not a doctor and, like most people on here, only have my own experience to go by along with things I have read along the way.
Is there a reason why you are not talking this through with an endocrinologist who has experience of treating many people?

 

[Antje77]

I have read your comments and given the guidelines is that our TDD (Total Daily Dose) in made up of 50% basal and 50% bolus

While I agree in general with your post, please be careful sharing this 50/50 thing as a guideline.
It may be a rule of thumb initially, and it can be useful to look at the percentages of basal and bolus if things aren't going right as part of a clue to what's going wrong.
But no guidelines say it should be 50/50 for everyone, and different percentages may well work better for some.

I've read too many posts by people who were anxious about doing something wrong because they read about the 50/50 thing and their insulins aren't evenly spread, even though they had great results.

 

[In Response]

While I agree in general with your post, please be careful sharing this 50/50 thing as a guideline.
It may be a rule of thumb initially, and it can be useful to look at the percentages of basal and bolus if things aren't going right as part of a clue to what's going wrong.
But no guidelines say it should be 50/50 for everyone, and different percentages may well work better for some.

I've read too many posts by people who were anxious about doing something wrong because they read about the 50/50 thing and their insulins aren't evenly spread, even though they had great results.

I thought this was the meaning of “guidelines”.
And my response clearly mentioned take less than 50% basal.

Maybe I could have been clearer than Google when searching for basal bolus ratios.

 

[Jaylee]

I have read your comments and given the guidelines is that our TDD (Total Daily Dose) in made up of 50% basal and 50% bolus, I am confused what difference 12 units of basal (less than 10% of your current TDD) would make when your levels are running high.
You took 16 units in 2016 when your diabetes was stable (have I missed the part that explains why you stopped taking it?) so why take less now? I do not understand why you would take less because your bolus is high - taking basal insulin to keep your levels stable in the absence of food and exercise, should enable you to reduce your bolus. It is not in addition to your bolus but instead of some of your bolus which you are using to constantly correct your levels because you don't have any background insulin to "mop" up the glucose your liver is dripping.
Given high BG makes us insulin resistant, I understand why you would not want to take 50% of your current bolus dose but 12 units will be a drop in the ocean which I would not expect to make any difference.

I am not a doctor and, like most people on here, only have my own experience to go by along with things I have read along the way.
Is there a reason why you are not talking this through with an endocrinologist who has experience of treating many people?

“Previously on 24.”

Our friend went from 16u back in 2016 to around 180 to 200u. James has gone back to taking 12u of basal as I surmise certain folk were concerned about the basal omission…

I share concern too.

I tried doing what @James472 was doing a number of years back? (With regards to cruising souly on Novorapid. As a trial for a number of days.)
It doesn’t work with pens… I feel @James472 is on a hiding to nothing with this technique..

That’s putting aside the allergy to “bed bugs.”

 

[EllieM]

Is there a reason why you are not talking this through with an endocrinologist who has experience of treating many people?

@James472 , I would just like to say that I 100% agree with this comment from @In Response . I strongly recommend a visit to an endocrinologist who will be able to make suggestions, ideally armed with records that illustrate the dust mite effect...

Maybe I've just been lucky with my diabetic teams, but they've mostly been helpful.

 

[jjraak]

Interesting topic .

Just to say I'm not T1, and honestly am utterly unqualified to suggest how anyone uses insulin.

But having suffered asthma since childhood to my 60's...

Can I just point out the point made that when we're ill our BG goes up.

I see my asthma as an additional condition I suffer alongside T2D.

I got tested ages back & use sprays (brown to aid prevention & blue for more immediate relief )

If I didn't (as in Undiagnosed ) I'd expect to struggle managing my BG, because literally, I'd be 'ill' every day, without the meds I use to assist me.

Perhaps, a possible part of the solution is to get the allergies tested & then IF diagnosed, get them under some control ?

Perhaps until that happens and leaves a more even keel, the task of balancing the vagaries of insulin, basal, etc
Is going to continue being an ongoing difficult battle.

As said my experience here is purely allergies, (namely dust mites)

Just a different viewpoint.

Best of luck managing this as best you can, whatever way you find works best for you.

 

[James472]

Ahhhhhhh ........... so much work to do !!!!!!!!!!!!! Hope my Smilies are working OK tonight - sorry folks, I'm not fully up-to-date with all the latest emoticons, so most of the time, you'll probably get the same old-style ones !

Where do I begin ???????

My offer last night to go back on basal ........... in response to @In Response , yes, you are right - 12 units would be a drop in the ocean. I'll try and explain it again below. But, as I said last night, sometimes you have to compromise, and sometimes not. And I see now, that my compromise position was probably pointless, so I'm going to retract it, and stand firm. 12 units is not going to make a difference, and right now, injecting as much as I require to daily, one less injection will be welcome. Today, for example, has been one of the difficult days, where you are searching for where the problem lies, and hopefully, you eventually find it. But because you're using a vacuum cleaner and a lint roller, it's difficult to know when you remove the problem. 2 things help you - your nose (nasal rhinitis), and your CGM reading. But you can't see what's getting vacuumed up (not in the level of detail that I need), and although the lint rollering is better, it's not perfect. Why ? Because first of all, I still don't know which are the significant 'items' - I'll detail aspects of that shortly. Secondly, you see too many different things - a hair from your forearm, a hair from your head, an eyelash, an eyebrow hair, maybe an occasional nasal hair etc. etc. Maybe a tiny bit of skin, particularly if anyone in the household suffers from dry skin. Some sebum, although think more of that tends to be more attached to the hair follice, but not always. The list goes on - trust me, all households have it, but not everybody is having to do this dreaded routine I'm involved in, using a lint roller. Also, while the lint roller gives better visibility, it's not so good at getting e.g. smaller bits of skin that are more likely to drop down into the carpet a bit, so whereas the vacuum would suck it up, the lint roller might not even touch it. This is the nightmare I am living.

I have been dragged in (kicking and screaming) to this obsessive routine, because my eyes have been opened, and I now realise that the answer to some aspects of my out-of-control T1 are in here somewhere. And when I go through the whole exhausting routine, I get results, and my so-called 'insulin resistance' stops happening.

So, IMHO, maybe insulin resistance is not simply insulin resistance - it's maybe this ! My question, pushed straight back out there would be, if I really had insulin resistance, why would it switch off and on ? Whereas, my suggestion above, starts to explain it with some logic.

As I said way back in the thread, if dust mites and / or demodex mites are in the equation, every household will be different, with different population numbers, so just because one person never sees any of this, or doesn't see it quite as dramatically as I do, probably just means you have a smaller population number. You want mine ? Hey - just send me a section of carpet, and I'll see if I can encourage them to move house !

Incidentally .......... they're not the same as 'Bed Bugs'. Paris (France) was suffering bed bug infestations within the last few weeks, so they could tell you all about those critters ! Bed bugs aim straight for us, and are almost vampire like - wanting blood. But bed bugs are at least visible, whereas dust mites are outside our vision - too small, and opaque. There are plenty of sources about them on the net. I think if we could see them, and the numbers there are, it could mentally scar us !

Have to say, this always had the risk of becoming a bit of a 'gross' subject matter, but sometimes you have to dig deeper (into nasty subject matters) to get some of the answers to certain things. I am not here by choice.

I'll try and put some more detail down below if I get time, but first of all, let me try again to explain my basal reasoning.

I have no problem with basal, and if I can resolve this issue, which I am in the process of trying to do, and I can get back to stable readings again, I'll be straight back on basal. No question. Absolutely no question.

But, I'm on approx. 200 units of insulin per day. Don't want to be, but am. And I actually need more than that most days, but I have to err on the side of caution when playing with these amounts.

So, say I played the 50/50 suggestion that was made earlier, and aimed for 100 units of basal. Let's for now ignore the Lantus shortcomings of 22 hours, and calculate based on one of your preferred 24 hour basals, so that would be 4.16667 units per hour, and over 7 hours, that would be approx. 29 units of basal.

Now, me being (for now anyway !) Mr Clean, I 'stumble' upon the source problem by doing a quick lint rollering just before bed, or I spray some Eucalyptus on just the right bit of furniture, or the right section of carpet (it's a lotto when you can't actually see the critters), so now the so-called insulin resistance is no longer there, so off I go to sleep, with 29 units heading my way.

Any suggestions where that scenario might be heading ??? ;-)

I hope, I really do hope, I have explained why, just until I get stability in some form, I'm safer off the basal for now. If I haven't, try me again, and I will try and think of another way to explain it.

OK, will break this for now, I do have more to add, and will see if I need to answer any specific points from last 2 days ........

 

[James472]

Be careful with the essential oils - they may be natural doesn’t mean they are innocuous , they can still cause problems with overuse, some quite nasty - including breathing problems. Essential oils are not regulated like medicines are.

Just an example from personal experience, I have psoriasis and evening primrose oil is recommended by my dermatologist to help control it, but I can’t use it as hubby has epilepsy and Evening Primrose Oil can bring on seizure’s

Essential oils – Health warning

Essential oils are any plant-based, volatile oil that contains a mixture of chemical compounds and have an aroma characteristic of the plant. Commonly used essential oils are eucalyptus oil, clove oil, tea tree oil and aromatherapy oils.

www.healthywa.wa.gov.au

Hi @lovinglife ,

Yes, thanks for that. I confess I am not an expert on them. I was forced into finding about them because of all this, and noted what I needed. I know you should not be applying directly onto skin etc., you need to dilute them. But I am sure there will be other aspects to be aware of. Also, I'm not spraying all the time, I'm still in the process of trying to find if it's a particular area of the house that works best. And if I spray, I try and keep it at floor level, or seating level, and leave overnight. And sometimes, it just works so well, and I wish I could pin down exactly what the formula for success is, but there is so much going on, it's quite exhausting.

I found that one of the supermarkets sells a Eucalyptus Honey, and thought ........ mmmmm, might be worth seeing if that helps, i.e. getting some Euc effect from inside out, but I never managed to see any significant improvements.