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ron davis ME & you & us and glucose?

humanrising

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I am still hoping that someone might know what Ron Davis figured out ... keep fingers crossed.

I wanted to know this because I was considering keto. I decided to go ahead and give it a try keto/elimination with "anti mold" diet with Bulletproof coffee. It was a bugger. My sugar craving was terrible. But, I had some interesting experiences.

I had mold free decaf coffee with a couple of teaspoons of regular coffee ( i am really sensitive to caffeine so i wanted just a tiny bit in my decaf) with grass fed butter and MCT oil first thing.

I then kept to three meals a day with more protein then "bulletproof diet" and a bit more carbs mostly yam. I also kept my feeding time limited to about 8 hours.

I was still hungry a lot of the time and i probably was not getting as much fat as i should have. hard to eat fat with out bread!

the first thing i noticed was my constant headache was gone. I have had a headache every day for more then ten years! over time i might get a mild headache in the back of my head from my neck but the constant migraine type headache was gone.
then it was my POTS gone!
then my brain woke up a bit. easier time finding words not feeling as loopy.

the down side my joints at night felt like someone was taking a blow torch to them. some of the worst pain i have ever felt. I was on this for 9 weeks and it never went away. I was thin to begin with and I lost another 10 plus pounds, every rib is showing. I am looking a little creepy so I quit a 5 days ago.

I should have started adding one food at a time going off it but I was pretty weak and so thin it was easier to just eat. happier too.

Its early days but going off it I ve noticed that my overall body and neck pain has been worse, headaches are back, been dizzy a bit and the night time blow torch is gone.

I had this very interesting experience with banana bread. ( sounds like a bad joke) My second day off I had a beef patty, white rice and brussel sprouts for breakfast and went grocery shopping. The lines were long and I thought I needed to eat to get home. there are no food bars now so eating on the fly is hard. I decided I would splurge and get a piece of banana bread and a decaf coffee. I had about half the banana bread and I felt like I threw back a shot of Jack Danials. I honestly felt dizzy, fuzzy and a little drunk.

As I drove home "altered" I realized how many times I felt like this and didn't put it together that it might be sugar making me loopy. I don't eat candy ( just dark chocolate) or a lot of sweet treats but I still probably eat way more then my body can metabolize properly.

My new plan is to get some weight back on and start over. I think I will try to figure out how to use a glucose monitor and maybe keto strips. I will then play with what my 'numbers" mean. Eat maybe more carbs and maybe even some grains but keep to eating more healthy fats and keeping my feeding time condensed. I don't think a strict keto is doable for me but eating what I was before clearly has repercussions. Mold is an issue for me so I know i have to keep the "moldly" foods out. raisins, chocolate, coffee

It gets to be so challenging if you take out grains, legumes, most nuts or a lot of nuts, night shades, dairy and carbs I, can't even eat a lot of crucifer veg since I have thyroid disease..... there is only so much meat you can eat.... even kale isn't great for you ( anti nutrients) I think there is probably some general things that might be good for a lot of us and then the rest is hit or miss and for me it looks like its going to be a lot of trial and error.
 

Wishful

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It gets to be so challenging if you take out grains, legumes, most nuts or a lot of nuts, night shades, dairy and carbs I, can't even eat a lot of crucifer veg since I have thyroid disease.....
Yes, being sensitive to several food families really does make it difficult to 'eat healthy'. Back when I tried a rotation diet, I found out just how few families of foods our supermarkets contained. Rule out some more foods just because we think they taste horrible. I can't even supplement with multivitamins, because I'm sensitive to niacin, and they all seem to have lots of that (probably cheap). I'm glad that I don't have a problem with whole grains.

It's kind of painful to look at pictures of delicious-looking meals...containing things I need to avoid. :(
 

ellie84

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Hi @Zebra,

I've gone through what you describe and have talked about it previously on these forums (2-3 years ago now). I know what you mean, the hypo events came on insidiously and eventually progressed to complete inability to think or remain upright , even sitting. Other symptoms involved cold sweats, inappropriate hunger, inappropriate thirst, bradycardia, wildly swinging blood pressure, blurred vision, extreme somnolence etc. I would eat a snack (usually carbs), lie down and come around 20-30 mins later feeling absolutely fine. This would happen 3-4 times a day and again waking me once in the night. BG readings were sometimes borderline low on fasting, but never notable.

It was a complete mystery to me and I hadn't made the connection with what I had been eating until I saw a very knowledgeable Endocrinologist, who diagnosed reactive hypoglycemia and made dietary interventions. Until that point I just assumed my CFS/ME had gotten worse. It was not classic diabetes of any variety.


The advice I got from the Endo was that you cannot spot these problems with random BG tests. You might show something unusual if doing a Glucose Tolerance Test in hospital with insulin monitoring, I recall there was at least one other member here who had one done with surprising results. Apparently a mixed-meal GTT is more sensitive if GI motility issues are involved in the underlying cause. There's multiple things at play, for me it seems like autonomic dysfunction best characterised by hyperadrenergic POTS was to blame. With late rapid gastric emptying (2-3hrs after eating) causing an excessive insulin release, and then an overly enthusiastic sympathetic system over-reacting to regulate it. In the literature the thoughts are that the problem is more to do with rapid/excessive changes made by the body causing the symptoms, rather than prolonged low BG as per diabetes.

This sort of issue is only really recognised by mainstream docs in patients that've had bowel resections or other major GI disruptions. 'Normal' patients will be told its a none-issue and 'just eat less cake'. This advice works until a point, you can increase protein/fats, but eventually if things are messed up enough this won't help. You'll be riding that carbohydrate roller coaster every time you eat. Thankfully my Endo treated a lot of patients with Orthostatic Intolerance/POTS and knew how significant this can be for us.

He 'prescribed' ketogenic diet and literally within a few days all the issues stopped. I remained on a very low carb diet for a couple of years, but have since been able to reintroduce small amounts of carbs again without too much issue. I am still too sensitive to eat a normal amount of carbs, if I go too far I start with the 'food coma' symptoms, but know to reign it back in before it progresses to the hypo events.

Unfortunately it seems that in some of us these alternative energy pathways don't work so well and nutritional ketosis can be very hard to obtain. I know of one case where there was significant symptoms and ketogenic diet could not be achieved, so the patient was treated with Octreotide with good results.


Absolutely, just be prepared for the crash a couple of hours later!

Hope that helps,
Ryan
I have this, plus impaired glucose intolerance (glucose too high at 2-hours), but I don't know anything for sure about my stomach and bowel motility (bowel motility is probably faster than normal). Actually I just got up from bed from one this food comas, at 6.30 pm.
My insuline curve was normal during the glucose tolerance test though, I'm still scratching my head about this, where does all that blood glucose go, from too high to too low? But maybe the explanation is simple, it's just that I don't know.
Endocrinologist suggested: multiple smaller meals throughout the day, avoid sugars, complex carbs spread through all the meals, high intake of fibres (whole cereals, vegetables). I just can't avoid sugars completely, I manage to do it for a while, then always relapse. These dietary suggestions did close to nothing for me, except making my IBS much worse. I found out after a year by myself that a high intake of fibres can cause diarrhea, because no one told me. So now I cut back on fibres.
Also, I've been underweight my whole life without restricting, always been hungry every 2-3 hours no matter what I ate. I'm now normal weight, but I only managed to gain weight with a hypercaloric diet and need to eat quite a lot, I think, to maintain this weight. I'm 50kg x 153cm, female, sedentary at the moment, and I'm eating around 2000-2200kcal. It still takes just one day eating a tiny bit less to lose a lot of weight and it takes months to gain it back. Always been like this, but I developed chronic fatigue only at 30 years of age.
I want to try low carb, but I'm scared to do it by myself, but will consider it.

I don't follow the research so I can't help with the original question, but I do have all of this in my personal experience.
 

Frunobulax

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the down side my joints at night felt like someone was taking a blow torch to them. some of the worst pain i have ever felt. I was on this for 9 weeks and it never went away. I was thin to begin with and I lost another 10 plus pounds, every rib is showing. I am looking a little creepy so I quit a 5 days ago.
The thing with ME/CFS is that we react differently than almost everybody else to some things. Still, I'd like to pitch a few ideas here.

(1) I hope you recover your weight and can get rid of the headaches and carb "loopyness"!

(2) You really have to eat a lot of fat on keto, which can be tough at first.
But stay away from omega-6 fatty acids (grain-based oils). Linoleic acid, advertised as "heart healty", is in reality quite toxic. (But this is not the place to discuss this in detail.) I got quite used to eating meat and vegetables with enormous quantities of lard and butter, plus salad with olive oil. Give me a decent portion of green salad with good olive or flaxseed oil and I'll be satiated for a long time. I can also treat myself to "fat bombs" that have something like 80% fat, like homemade white chocolate (I do white chocolate to avoid the oxalates in cacao, using lots of cacao butter, a bit of milk powder, sweetener and some lecithin). Mushrooms fried in olive oil or butter/lard are really 90% fat (plus fiber), yet incredibly tasty.

(3) It's unusual to lose so much weight on keto (if you're not overweight). Any chance to distinguish between muscle and fat here? I wouldn't worry about fat loss. Even slim people can be "fat inside" (fatty liver), so they might lose fat/weight on keto. And some weight loss is water. We store up to 500g glycogen in up to 2500g water, so most people switching from high carb to keto will lose 4-6 pounds very quickly simply because they empty their glycogen stores. As for muscles, studies show that people typically keep their muscle mass on keto, or even build up muscle mass.

But assuming that you did indeed lose muscle mass, then you need to figure out why.
Hard to take a guess what exactly is going on, without knowing exactly what you ate and your health history. Is it possible that you have low stomach acid? Then you won't be able to digest enough protein, because we need acid to break down protein. Betain HCL can help in this case, or going ultra high fat with moderate protein. (We need only very little stomach acid to digest carbs and fat.)

(4) You can get a most of the benefits of a low carb diet if you eat some carbs but restrict them to once a day and to low glycemic index carbs. This way insulin will still be a lot low (in the grand scheme of things), although not as low as on keto. So maybe eating two "keto-like" meals and a third, carby meal is worth a try?

(5) The joint pain you describe could be an issue of oxalate detoxing. But I figure you already know about oxalates, judging from your post? Sally K. Norton has some great videos on that.
 
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Frunobulax

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I have this, plus impaired glucose intolerance (glucose too high at 2-hours),
[...] My insuline curve was normal during the glucose tolerance test though, I'm still scratching my head about this, where does all that blood glucose go, from too high to too low? But maybe the explanation is simple, it's just that I don't know.
[...] I found out after a year by myself that a high intake of fibres can cause diarrhea, because no one told me. So now I cut back on fibres.
There are basically 3 possible pathways to eliminate blood glucose:
1. Into our muscles. This is fast and requires little insulin. But we lose that ability with insulin resistance and possibly impaired glycogenesis (ability to store glucose as glycogen). And of course if you eat a lot of carbs, glycogen stores can simply be full.
2. Through the liver, which turns glucose to fat. This takes longer, and causes fatty liver in the long run. This is kind of the "overflow valve" if the glucose can't get into the muscles. (Nonalcoholic fatty liver is one of the best indicators for prediabetes.)
3. We excrete it via urine, which is usually the case only if you're diabetic and the above pathways don't work anymore.

If your insulin is normal but your glucose is high, I'm afraid the most likely explaination is diabetes or prediabetes (where the pancreas can't manufacture enough insulin). What's your HbA1C? Anything above 5.5 indicates that you have a serious issue with blood glucose. If it's closer to 5, you don't need to worry. Another measure is triglycerides, healthy is below 150, significantly higher is a red flag. It could be type 1 diabetes, which is completely different from type 2 (from a pathomechanical standpoint) even though the main symptom (high blood glucose) is the same. About 10% of all diabetes cases with adult onset are caused by type 1 diabetes, and doctors often forget to test for that.

Fiber is controversial. It's clearly not as beneficial as many people think. There are two kinds, soluble and insoluble fiber. My personal opinion is that too much insoluble fiber causes digestion problems and has little to no benefits. Soluble fiber OTOH can be quite beneficial, as our gut bacteria can turn soluble fiber into fatty acids that support our immune system.

If you want to learn about all this, here is a playlist on youtube I made: https://www.youtube.com/playlist?list=PLPxIHxsNKIZLcPj9YdGO_M43aWNROTxTf
 
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bertiedog

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https://ghr.nlm.nih.gov/condition/congenital-hyperinsulinism

Interesting that a heterozygous change in SLC16A1 (for MCT1) has been associated with migraines. I do suffer from migraines. I’ve had partial success with prevention by taking Vit B2 Riboflavin.
I have migraine type headaches almost daily and huge issues with my blood sugar. I couldn't get any result for SLC16A1 but I am homozygous for 3 out of 6 SNPs on SLC16A2

Pam
 

ellie84

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Hi @Frunobulax , thanks for your reply.

I don't have high blood glucose, my fasting blood glucose is always under 100. I only have impaired carbohydrates tolerance (which is impaired blood glucose at 2-hours mark after meal), without impaired fasting glucose. This increases risk for diabetes type 2 in the future. The diet is a preventive treatment for that. Supposedly ICT shouldn't give any symptom, only reactive hypoglycemia should, but I feel equally as bad. To be honest I care more about the symptoms than future risk. That's what bothers me and makes my life difficult. HbA1C was 5.4 last year (range 4-5.6) and has always been in range. Triglycerides are OK too. No fatty liver either.

So I'm still scratching my head here :confused:

But I'm waiting for the results of the endocrinological evaluation I did, so maybe I'll have some more elements.

Saved that playlist, thank you!
 

Frunobulax

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Hi @Frunobulax , thanks for your reply.

I don't have high blood glucose, my fasting blood glucose is always under 100. I only have impaired carbohydrates tolerance (which is impaired blood glucose at 2-hours mark after meal), without impaired fasting glucose. This increases risk for diabetes type 2 in the future. [...] HbA1C was 5.4 last year (range 4-5.6) and has always been in range. Triglycerides are OK too. No fatty liver either.
Sounds like you're doing OK :) HbA1c is a pretty good measure for blood glucose control (for the last 3 months). Maybe your glucose is a bit high after the oral tolerance test, but it seems you restrict yourself mostly to the carbs that your body can handle.

Having said that, fasting blood glucose is one of the worst measures for glycemic control. Blood glucose can be on the high side (say 100-110) even for people with perfect blood glucose control. My blood sugar is never over 120 even after meals (on keto), yet my fasting bg is ~105 (HbA1c at 5.0). The problem is that high insulin does as much damage as high glucose, but insulin is rarely measured. And the majority of the population has high insulin, with normal glucose. Many researchers argue nowadays (based on research from the last 20 years) that we should look less at glucose and more at insulin -- unfortunately it takes several decades until such research filters into education, and even longer until doctors in the field know about it. (The american diabetes association was among the institutions that completely ignored the research for decades, until they made a 180 degree turn last December and suddenly named a low carb diet as the best available option for diabetics in their new guidelines.)

To compare it with a burning house (insulin or glucose control is impaired), the indicators are in the following order:
  1. Any one of the following indicates that something caught fire but may not yet be visible from the outside (you're starting on a slippery slope towards diabetes, in most cases with high insulin): High fasting insulin (or HOMA-IR, a blood measure for insulin resistance), high triglycerides, fatty liver or a BMI significantly over 25.
  2. HbA1c rises over 5.5 when the fire starts to get out of control (your pancreas can't manufacture enough insulin for the carbs you eat, you have only a few years before you develop diabetes). Going low carb can reverse this.
  3. Fasting blood glucose is high (over 125) or HbA1c is over 6.5 is when you can see the flames from far away. (This is full blown diabetes, and irreversible for about half of the patients because the pancreas is severely damaged.)
Technically, we're talking about Kraft patterns (https://www.meridianvalleylab.com/kraft-prediabetes-profile-patterns-overview/) which measures both insulin and glucose. Kraft I and V are healthy. Almost 90% of the adult US population are II, III or IV, having high glucose, high insulin or both.

Dietdoctor.com has a lot of accessible texts and podcasts on this subject. For those more interested in research, check the "low carb down under" channel on youtube.
 

ellie84

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Technically, we're talking about Kraft patterns (https://www.meridianvalleylab.com/kraft-prediabetes-profile-patterns-overview/) which measures both insulin and glucose. Kraft I and V are healthy. Almost 90% of the adult US population are II, III or IV, having high glucose, high insulin or both.
Interesting. It looks like I am pattern IIIA, my insulin peaked at second hour instead of first (although it was lower than 50) and I have impaired glucose tolerance.
 

humanrising

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I am back to eating everything.... so happy! I am fatting up then will revist.
its hard to say what I lost ……. I drink water constantly pee a ton at night and feel dehydrated all the time, pretty common I believe. I have very little muscle left due to inactivity so my guess is I lost fat but I was still on the thin side before I started.... can't imagine I had enough muscle to lose. I believe I didn't eat enough fat and I am not sure I can pull the Keto thing off but not giving up yet.
I have a bit to learn about glucose and insulin levels. I will look at the sites you listed here hopefully my taxed brain can understand enough of it to apply it.
 

Dakota15

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@ljimbo423 I saw you referenced Zonulin earlier in this thread. Say you take a stool test for this & it registers high, signifying a "leaky gut". What would the theoretical treatment steps be..?
 

lenora

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My last hospitalization and med changes has left me like this: A carbohydrate monster....things that I usually wouldn't touch under any circumstances. Ramen noodles just broken up and eaten raw....I like that crunch, crunch sound.

A can of chicken noodle soup and a sleeve of crackers. I don't know how many sleeves of crackers I've eaten since this began. I keep hoping I'll make myself sick on both the crackers and the Ramen. I'm not even fond of that type of food BUT there is something about this that has me captured. It isn't even nutritious and that's my gold standard. Has this type of thing happened to anyone else....and what was the outcome? I can tell you that the outcome will be full blown diabetes b/c I have to watch my carbohydrates b/c of being pre-diabetic. No sweets, I'm completely and totally off them....my body is going haywire. A friend suggested that perhaps I was low on serotonin, which is a very real possibility. Of course being high has the same symptom....as if life isn't confusing enough. I did send a note off to one of my doctors' and hope to have an answer next week at some point. See if he agrees about the serotonin. Anyway, it's all bizarre, I'll weigh 50 lbs. more than average and once again, I'll have to buy new clothes! Only this time, I'm just not. Yours Lenora.
 

lenora

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Hi sb4......I don't remember the meds I was on b/c my husband was doing them. (My brain was in la la land.) I'll check with him....too many hospitalizations too close together, plus the IV's they gave me, have certainly upset something. I know that Keppra can put weight on you, but this is craziness. It's sweet of you to take time out to help me figure this out. I've given my neurologist the info about wanting Ramen (carbohydrates) and salads (crunchiness b/c we put everything in them), but it doesn't leave me in good form as far as nutrition goes...and I'll end up right back in the hosp. again. I didn't know the human body could have so many things wrong in 8 mos. Little do I know....about anything!

Ah, here's Rod with his list of drugs, etc., at least since January, wherein I was diagnosed with Autoimmune Encephalitis followed up by Congestive Heart Failure in April.

By the way, Rod's from Bath and used to live in Manchester when he was a boy (a very long time ago). So he know. Where do you live? We met in PA. in my mother's dining room. She was from London and Englishmen were in very short supply in the area I'm from. Many happy memories for both of us. Anyway, we're the old ones now, and everyone (just about) from my family has departed. That's been hard, but that's old age, although they were all younger than me...some very young when they went.

I'm glad you're part of a forum, it saved my brain from shrivelling up many, many years ago. Not this one, but I helped found ones for my primary illnesses. (On the attached if no end date it's b/c I'm still taking it. You can see it's quite a list...in a year I'll be able to get off some things but I'll probably be put on just as many more. Before all this, I was taking 5 meds./day & my vitamins/supplements. Thanks for your efforts & dont' worry if you can't figure them out. I'm tolerating them well, except for the Ramen and gaining weight. Thanks for any help you can give...it's most appreciated. Yours, Lenora.
 

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lenora

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Yes, being sensitive to several food families really does make it difficult to 'eat healthy'. Back when I tried a rotation diet, I found out just how few families of foods our supermarkets contained. Rule out some more foods just because we think they taste horrible. I can't even supplement with multivitamins, because I'm sensitive to niacin, and they all seem to have lots of that (probably cheap). I'm glad that I don't have a problem with whole grains.

It's kind of painful to look at pictures of delicious-looking meals...containing things I need to avoid. :(
And then you don't feel like eating, because where's the joy? It's just a lot of hard work. What if I give you half of my new-found weight. We'd both be just about right and it would save us both a lot of trouble. Yours, Lenora
 

ljimbo423

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@ljimbo423 I saw you referenced Zonulin earlier in this thread. Say you take a stool test for this & it registers high, signifying a "leaky gut". What would the theoretical treatment steps be..?
It depends on what's causing the leaky gut. Bacterial dysbiosis in ME/CFS is extremely common though. If the cause is bacterial, herbs like oil of oregano, berberine, neem, thyme and olive leaf extract have all helped me, with a low carb diet.

A word of caution though, many people experience die-off symptoms from killing the gut bacterial overgrowth. Which are a worsening of already existing symptoms.

That's not a bad thing, the goal is to kill the bad bacteria and minimize the bacterial overgrowth but it can be anywhere from uncomfortable to intolerable and is usually dependent on how big or small the dose of herbs you take is.
 

sb4

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@lenora I may not be reading that correctly but youre right, that is a ton of meds. You still on them.

I noticed that says pounding heart as a symptom which is my worst symptom. There is a massive increase in this after carb rich meals which for me ties in with this pyruvate dehydrogenase inhibition stuff. Do you notice worsening after carbs inparticular?

I also get significant noticable wieght gain with carbs but low carb my wieght stays steady.
 

lenora

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@lenora I may not be reading that correctly but youre right, that is a ton of meds. You still on them.

I noticed that says pounding heart as a symptom which is my worst symptom. There is a massive increase in this after carb rich meals which for me ties in with this pyruvate dehydrogenase inhibition stuff. Do you notice worsening after carbs inparticular?

I also get significant noticable wieght gain with carbs but low carb my wieght stays steady.
@lenora I may not be reading that correctly but youre right, that is a ton of meds. You still on them.

I noticed that says pounding heart as a symptom which is my worst symptom. There is a massive increase in this after carb rich meals which for me ties in with this pyruvate dehydrogenase inhibition stuff. Do you notice worsening after carbs inparticular?

I also get significant noticable wieght gain with carbs but low carb my wieght stays steady.
Yes, sb4, that is a ton of meds. Too many doctors are involved, although I now have a serious heart condition on top of everything else.

Well, for the most part I'm out of carbs (and told my husband not to buy more), and just had soup....I know, I know, salt's not good for BP, when I should have had one of the wonderful crunchy salads I so love. I also need meat.

I never noticed the pounding heart after having carbs, but as you can see I'm on anti-anxiety meds, which help immensely. And yes, carbs will give me a huge amount of wt. gain, and my weight hasn't been steady for years. Rod built me a closet the size of a room and I have clothing from x-small to almost large in it...I should have know when I gave the l. away that something like this would happen. I'll be able to go off the anti-convulsant, Keppra, next May if everything stays OK. In the meantime it has to be lowered b/c it's too high as things are now. It's a hard drug to regulate...or so it seems. I'll ask my neurologist to go over the list the next time I see him (which could be anytime) but is scheduled for July. I can call him & he'll see us at his office. My Internist keeps a pretty close eye on drugs also, but the cardiovascular guy is higher than her on the totem pole. Some of this may be until my body regulates itself, but it's difficult. Keep yourself healthy, exercise as much as you can (even if it's walking around the room), watch those carbohydrates and your weight...in other words, do a better job than I did. Mind you, I used to walk a minimum of 3 miles/day, often 6, bike ride and cook wonderful, healthy food for my family. The body breaks down as we get older....and that I am. Thanks sb4. Yours, Lenora. 's