Desperate to find answers for my breathing problems and wheezing lasting almost an entire year non stop

[mostlylurking]

@pubh12 I found an article that you might find of interest:

Fixing Air Hunger in America

 

[pubh12]

@pubh12 I found an article that you might find of interest:

Fixing Air Hunger in America

That is interesting , I was trying to find that article actually , I had read it a couple of months ago and couldn’t find it again. They specifically mention no wheezing with this breathing issue , but that’s not the case with me.

Since my cheeks and face are kind of swollen , especially the inner lining of my cheeks, since I started Fludrocortisone, there must be some connection with a potassium deficiency causing edema in my airways. Like you’d look at my cheeks and think I ate something I was allergic to. If there is tissue swelling out in the pharynx or larynx from potassium defieincy that would make sense symptom wise , but doesnt exactly seem like a common issue with potassium deficiency. I wouldn’t be surprised a laryngoscope would miss something like that. I find if I drink something ice cold the breathing clears up for a couple of breaths before getting bad again (I have noticed this last night and another time a few weeks ago , I’ll have to experiment with it more)

Part of me feels like I’m close to figuring this out and part of me feels like giving up since it’s been a year with no second of releif. But as long as there’s edema in my mouth I can’t say for certain there isn’t more somewhere else along the way , despite nobody seeing anything on scopes.

 

[mostlylurking]

That is interesting , I was trying to find that article actually , I had read it a couple of months ago and couldn’t find it again. They specifically mention no wheezing with this breathing issue , but that’s not the case with me.

Since my cheeks and face are kind of swollen , especially the inner lining of my cheeks, since I started Fludrocortisone, there must be some connection with a potassium deficiency causing edema in my airways. Like you’d look at my cheeks and think I ate something I was allergic to. If there is tissue swelling out in the pharynx or larynx from potassium defieincy that would make sense symptom wise , but doesnt exactly seem like a common issue with potassium deficiency. I wouldn’t be surprised a laryngoscope would miss something like that. I find if I drink something ice cold the breathing clears up for a couple of breaths before getting bad again (I have noticed this last night and another time a few weeks ago , I’ll have to experiment with it more)

Part of me feels like I’m close to figuring this out and part of me feels like giving up since it’s been a year with no second of releif. But as long as there’s edema in my mouth I can’t say for certain there isn’t more somewhere else along the way , despite nobody seeing anything on scopes.

Are you still taking the Fludrocortisone? It sounds like a really nasty dangerous drug. Have you considered that you are having an allergic reaction to it?

 

[pubh12]

Are you still taking the Fludrocortisone? It sounds like a really nasty dangerous drug. Have you considered that you are having an allergic reaction to it?

No I took it for a couple months over a year ago and stopped last December. Stopping hasn’t reversed any of the edema issues or breathing problems. I’m guessing because of a Thiamine deficiency making me unable to retain potassium. If one were Thiamine deficient and potassium deficient , how much potassium would I need to supplement ?

 

[mostlylurking]

No I took it for a couple months over a year ago and stopped last December. Stopping hasn’t reversed any of the edema issues or breathing problems. I’m guessing because of a Thiamine deficiency making me unable to retain potassium. If one were Thiamine deficient and potassium deficient , how much potassium would I need to supplement ?

That question is above my pay grade. However, it is my understanding that potassium supplementation can have bad side effects so I chose to supplement potassium via orange juice.

 

[pubh12]

That question is above my pay grade. However, it is my understanding that potassium supplementation can have bad side effects so I chose to supplement potassium via orange juice.

What is your opinion on a b5 deficiency ? Is this possible to occur ?

 

[mostlylurking]

What is your opinion on a b5 deficiency ? Is this possible to occur ?

B5 (pantothenic acid) is available in many foods; liver and mushrooms are two of them. It would be most unusual to be deficient in it because it is found in so many foods. I think that getting it from food is a lot safer that taking a supplement of B5.

The one time I took a B5 supplement capsule, I reacted very badly to it. Evidently there's something about it that encourages the release and brake down of fatty acids. If there's toxins stored in your fat (think stored PUFA) this can cause negative symptoms which I think is what happened to me. It took 2 nights of high stress wakefulness + headache and general malaise at 3:00am-5:00am to get over that one pill. I used the time to research b5.

The B5 pill I took was 500mg; prescribed by my then doctor. I was going to her in order to get my prescription desiccated thyroid medication. I'm in a small town; there's not a lot of doctors to choose from. This doctor did a lot of weight loss counseling. Evidently, weight loss doctors like to prescribe b5 to help people lose weight.

Warning: When reading about vitamin b5, keep in mind that PUFA (polyunsaturated fatty acid) is very toxic and should be avoided; it breaks down into very toxic components. PUFA that is stored in the body fat should be considered as a dangerous toxin; it takes a healthy liver to detox PUFA and it needs to be done over a long time period; if too much PUFA is released and broken down at once, dangerous negative effects will be experienced.

Pantothenic Acid – Vitamin B5

Vitamin B5, or pantothenic acid, is naturally present in foods, added to foods, and available as a supplement. It is used to make coenzyme A (CoA), a chemical compound that helps enzymes to build a…

www.hsph.harvard.edu

"Vitamin B5, or pantothenic acid, is naturally present in foods, added to foods, and available as a supplement. It is used to make coenzyme A (CoA), a chemical compound that helps enzymes to build and break down fatty acids as well as perform other metabolic functions, and acyl carrier protein, which is also involved in building fats."

Ray Peat on PUFA:

Unsaturated fatty acids: Nutritionally essential, or toxic?

Ray Peat

raypeat.com

"The amount of polyunsaturated fatty acids often said to be essential (Holman, 1981) is approximately the amount required to significantly increase the incidence of cancer, and very careful food selection is needed for a diet that provides a lower amount."

"The fragments of deteriorating PUFA combine with proteins and other cell materials, producing immunogenic substances. The so-called "advanced glycation end products," that have been blamed on glucose excess, are mostly derived from the peroxidation of the "essential fatty acids." The name, “glycation,” indicates the addition of sugar groups to proteins, such as occurs in diabetes and old age, but when tested in a controlled experiment, lipid peroxidation of polyunsaturated fatty acids produces the protein damage about 23 times faster than the simple sugars do (Fu, et al., 1996)."

 

[pubh12]

B5 (pantothenic acid) is available in many foods; liver and mushrooms are two of them. It would be most unusual to be deficient in it because it is found in so many foods. I think that getting it from food is a lot safer that taking a supplement of B5.

The one time I took a B5 supplement capsule, I reacted very badly to it. Evidently there's something about it that encourages the release and brake down of fatty acids. If there's toxins stored in your fat (think stored PUFA) this can cause negative symptoms which I think is what happened to me. It took 2 nights of high stress wakefulness + headache and general malaise at 3:00am-5:00am to get over that one pill. I used the time to research b5.

The B5 pill I took was 500mg; prescribed by my then doctor. I was going to her in order to get my prescription desiccated thyroid medication. I'm in a small town; there's not a lot of doctors to choose from. This doctor did a lot of weight loss counseling. Evidently, weight loss doctors like to prescribe b5 to help people lose weight.

Warning: When reading about vitamin b5, keep in mind that PUFA (polyunsaturated fatty acid) is very toxic and should be avoided; it breaks down into very toxic components. PUFA that is stored in the body fat should be considered as a dangerous toxin; it takes a healthy liver to detox PUFA and it needs to be done over a long time period; if too much PUFA is released and broken down at once, dangerous negative effects will be experienced.

Pantothenic Acid – Vitamin B5

Vitamin B5, or pantothenic acid, is naturally present in foods, added to foods, and available as a supplement. It is used to make coenzyme A (CoA), a chemical compound that helps enzymes to build a…

www.hsph.harvard.edu

"Vitamin B5, or pantothenic acid, is naturally present in foods, added to foods, and available as a supplement. It is used to make coenzyme A (CoA), a chemical compound that helps enzymes to build and break down fatty acids as well as perform other metabolic functions, and acyl carrier protein, which is also involved in building fats."

Ray Peat on PUFA:

Unsaturated fatty acids: Nutritionally essential, or toxic?

Ray Peat

raypeat.com

"The amount of polyunsaturated fatty acids often said to be essential (Holman, 1981) is approximately the amount required to significantly increase the incidence of cancer, and very careful food selection is needed for a diet that provides a lower amount."

"The fragments of deteriorating PUFA combine with proteins and other cell materials, producing immunogenic substances. The so-called "advanced glycation end products," that have been blamed on glucose excess, are mostly derived from the peroxidation of the "essential fatty acids." The name, “glycation,” indicates the addition of sugar groups to proteins, such as occurs in diabetes and old age, but when tested in a controlled experiment, lipid peroxidation of polyunsaturated fatty acids produces the protein damage about 23 times faster than the simple sugars do (Fu, et al., 1996)."

Do you think 200mg of allithiamine a day is enough to replenish the body from a severe deficiency ?

 

[mostlylurking]

Do you think 200mg of allithiamine a day is enough to replenish the body from a severe deficiency ?

I honestly don't know. I hope so because my husband takes 200mg of TTFD allithiamine daily. It has helped him, I believe, but his thiamine deficiency and your own are most likely not the same. I'm sure that some people would need to take more of it. When I tried to take that type of thiamine, I reacted badly to a single dose because I was deficient in glutathione and TTFD allithiamine uses some glutathione to work. So I chose to stick with thiamine hcl and follow Dr. Costantini's protocol; he always used thiamine hcl to treat his Parkinson's Disease patients.

I think that finding the right dose of allithiamine would be a trial and error sort of thing. Dr. Chandler Marrs prescribes TTFD allithiamine for her patients; she has reported that some of them (with multiple sclerosis? other?) were taking more than a gram of it. There are videos of Dr. Marrs talking about thiamine here (the first four).

 

[maillol]

My breathing has improved over the last month while I've been taking Nystatin. Initially got worse which I assume was die off.

 

[pubh12]

My breathing has improved over the last month while I've been taking Nystatin. Initially got worse which I assume was die off.

Why do you think that was helpful in your case ?

 

[maillol]

Why do you think that was helpful in your case ?

I think I had/have a yeast infection. I also found lowering my iron helped. Yeast feeds on iron so the two could be connected.

 

[pubh12]

@mostlylurking

So is it essentially impossible to have good Potassium and Magnesium levels if you are thiamine deficient ? Would taking high doses of Thiamine without Mg or potassium contribute to the deficiency

 

[mostlylurking]

@mostlylurking

So is it essentially impossible to have good Potassium and Magnesium levels if you are thiamine deficient ? Would taking high doses of Thiamine without Mg or potassium contribute to the deficiency

I don't think so. You could be ok with your potassium and magnesium and also have a thiamine deficiency I think. Yes, high dosing thiamine will increase your use of potassium and magnesium so if you are borderline in them you could get a deficiency in them. Potassium can usually be effectively supplied via food sources easily; I rely on orange juice for it myself. I do take some supplemental magnesium glycinate as I quickly got magnesium deficiency symptoms when I started taking high dose thiamine hcl.

 

[pubh12]

I don't think so. You could be ok with your potassium and magnesium and also have a thiamine deficiency I think. Yes, high dosing thiamine will increase your use of potassium and magnesium so if you are borderline in them you could get a deficiency in them. Potassium can usually be effectively supplied via food sources easily; I rely on orange juice for it myself. I do take some supplemental magnesium glycinate as I quickly got magnesium deficiency symptoms when I started taking high dose thiamine hcl.

But thiamine deficiency causes intracellular potassium wasting doesn’t it? You’d think it would be quite difficult to get good potassium levels in that case

 

[mostlylurking]

But thiamine deficiency causes intracellular potassium wasting doesn’t it? You’d think it would be quite difficult to get good potassium levels in that case

I haven't had any problems with potassium levels. I drink around 24 ounces of orange juice daily and I eat a banana a few times a week. I take high dose thiamine hcl. There is concern that taking high dose thiamine can use up more potassium; I rely on my diet for my potassium.

I see that you said "thiamine deficiency" causes potassium wasting, not thiamine supplementation. I am not aware of that but it's possible I guess. Do you have a source for this info?

 

[pubh12]

I haven't had any problems with potassium levels. I drink around 24 ounces of orange juice daily and I eat a banana a few times a week. I take high dose thiamine hcl. There is concern that taking high dose thiamine can use up more potassium; I rely on my diet for my potassium.

I see that you said "thiamine deficiency" causes potassium wasting, not thiamine supplementation. I am not aware of that but it's possible I guess. Do you have a source for this info?

Thiamine Deficiency Causes Intracellular Potassium Wasting - Hormones Matter

Whilst I always suspected a link between potassium and thiamine, I hadn't found research elucidating the mechanisms. Thiamine deficiency causes intracellular potassium wasting.

www.hormonesmatter.com

 

[mostlylurking]

Thiamine Deficiency Causes Intracellular Potassium Wasting - Hormones Matter

Whilst I always suspected a link between potassium and thiamine, I hadn't found research elucidating the mechanisms. Thiamine deficiency causes intracellular potassium wasting.

www.hormonesmatter.com

thanks, I'll read it.

 

[mostlylurking]

Thiamine Deficiency Causes Intracellular Potassium Wasting - Hormones Matter

Whilst I always suspected a link between potassium and thiamine, I hadn't found research elucidating the mechanisms. Thiamine deficiency causes intracellular potassium wasting.

www.hormonesmatter.com

I think this explains why my edema disappeared after supplementing with thiamine for a few months; by the time I had worked my way up to my optimum dose of thiamine hcl, the edema was gone completely. Then my electrolytes were off and I got this problem straightened out by eating a little more salt.

 

[pubh12]

I think this explains why my edema disappeared after supplementing with thiamine for a few months; by the time I had worked my way up to my optimum dose of thiamine hcl, the edema was gone completely. Then my electrolytes were off and I got this problem straightened out by eating a little more salt.

Where did you have edema? My whole inner lining of both cheeks swelled up after Fludrocortisone and I’m thinking maybe it’s from potassium deficiency. But edema in the mouth or airway isn’t a common manifestation.