Sjögren's syndrome

[EchoTango]

I tried antihistamines for three and a half days plus ivm. My parotid gland swelling went way down and I realized my eyes were a lot brighter/open (because the swelling above my eye was also gone)

However, I am two days out now and it's coming back. I have a headache, confusion, fatigue, more gland swelling, this time with a need to clear my throat for a while after eating. I really think its attacking my kidneys too. It is kind of like diabetes but not hungry/thirsty or aggitated. Just forgetful and confused. I hope to go to the dr soon...but if it is sjogren's, i'm not sure treatment will be all that helpful.

Maybe treating underlying stress/cortisol? This sucks. I'll be following the thread

Thanks for sharing your report. Did you use the IVM paste?
I'm not sure if anyone is interested, but maybe it helps to map out the course of the symptoms.

For me, my eyes began being dry about 3 years ago while I was camping extensively in a windy coastal environment. I also drank some spring water during this time. I think the parasite approach is interesting. But, on the whole I chart my cycles and see that dry eye is always worst when estrogen is high.

About a year later I was accidentally poked in the eye. I was abroad and the infection was painful and increased over 3 days so I went to get medical treatment. They saw a scratch on my eye (corneal abrasion) and prescribed a venoumous horrible drug, called cyclogel which inflamed my eye and caused me to lose sleep for a week.

Then I went to an ophthalmologist - still abroad - gave me cortisol drops- which saved my eye from the severe inflamation.

Then another doctor -also abroad - was happy to diagnose me with this genetic condition. Of course she didn't listen to my story. That I noticed the symptoms correlated with my menstrual cycle. Or that I had had a terrible reaction to the cyclogel. She was a wicked witch contented to doom me to a life of genetic disease. Well, she was wrong.

Back in my home country. I still had dry eye, corresponding at times of high estrogen. I went to the ophthalmologist who discovered a tiny eyelash growing the wrong way - scraping my eye, making it red.

The fifth opthamologist - the oldest of all the doctors - finally confirmed last year that my eye looks perfect, and that yes, cyclogel often cause serious reactions such as the one I reported.

So my story is confusing, but shows how complicated things may get when the root of a health issue isn't addressed. Having dry eyes, made them more prone to infection. I think while cortisol can save your eye in case of emergency, it is the best course to work on lowering estrogen and cortisol and getting out of the stress cycle for the long term, at least for me I see great improvement. I think it takes time to build the body back after these difficult times, but it can be done.

Have you tried progesterone? Are you a woman?

 

[skuabird]

@EchoTango

I may have spoken too soon. So I did feel dreadful but I've bounced back. I really cringe at trying to report my problems because they do tend to come and go, the improvement may have been hormonal. I am a woman, and I do notice the paratoid gland swells around ovulation and/or afterwards (recent development since 2021, before it was mostly dry eyes and an increase in digestive issues, fatigue and joint pain- though the joint pain is not reappearing since adopting bioenergetics from carnivore). I was taking progesterone at night (and when I first got it- mega dosing during luteal multiple times a day) but was not taking it in the morning until recently (with very small doses of pregnenalone and dhea) as recommended by @Nemo. I also have started taking smaller doses of desiccated thyroid all through out the day instead of one small scoop in the morning as well. I think thyroid and progesterone have helped halt arthritis and the deterioration of my spine.

Because my symptoms often get worse during the luteal phase- especially fatigue- and I believe your immune system is hampered(?) during luteal, the parasite idea maps pretty well.

I took anti-histamines June 27-30, ivm (horse paste) 28 and 29. Felt better during but could not sleep well. Swelling went down but I felt my cortisol was off track. (I started taking holy basil tea at night and in mornings soon after).

July 2nd, felt like garbage, seriously contemplating just taking the hit and going to the Dr. Gland swelling back, heart pain, frequent urination of very small volumes, feeling like something is bothering/sitting in my bladder.
I decided to try charcoal (with ACV and a tbsp of coconut oil) before bed followed by some senna tea.

July 3rd, feeling pretty good. A little heart pain. Passed some clear flesh-like object during urination (sorry tmi). And I've been feeling really great since the charcoal. I have regained my tolerance to different foods and alcohol. (When I get really sick I cannot drink green tea without getting pain/nausea - probably liver related).

Could be endotoxins, could be hormones changing (today is day 1 for me), could be lowering cortisol through holy basil tea and meditation.

 

[Dr. B]

Thanks for sharing your report. Did you use the IVM paste?
I'm not sure if anyone is interested, but maybe it helps to map out the course of the symptoms.

For me, my eyes began being dry about 3 years ago while I was camping extensively in a windy coastal environment. I also drank some spring water during this time. I think the parasite approach is interesting. But, on the whole I chart my cycles and see that dry eye is always worst when estrogen is high.

About a year later I was accidentally poked in the eye. I was abroad and the infection was painful and increased over 3 days so I went to get medical treatment. They saw a scratch on my eye (corneal abrasion) and prescribed a venoumous horrible drug, called cyclogel which inflamed my eye and caused me to lose sleep for a week.

Then I went to an ophthalmologist - still abroad - gave me cortisol drops- which saved my eye from the severe inflamation.

Then another doctor -also abroad - was happy to diagnose me with this genetic condition. Of course she didn't listen to my story. That I noticed the symptoms correlated with my menstrual cycle. Or that I had had a terrible reaction to the cyclogel. She was a wicked witch contented to doom me to a life of genetic disease. Well, she was wrong.

Back in my home country. I still had dry eye, corresponding at times of high estrogen. I went to the ophthalmologist who discovered a tiny eyelash growing the wrong way - scraping my eye, making it red.

The fifth opthamologist - the oldest of all the doctors - finally confirmed last year that my eye looks perfect, and that yes, cyclogel often cause serious reactions such as the one I reported.

So my story is confusing, but shows how complicated things may get when the root of a health issue isn't addressed. Having dry eyes, made them more prone to infection. I think while cortisol can save your eye in case of emergency, it is the best course to work on lowering estrogen and cortisol and getting out of the stress cycle for the long term, at least for me I see great improvement. I think it takes time to build the body back after these difficult times, but it can be done.

Have you tried progesterone? Are you a woman?

does progesterone help your symptoms? do you think it increases or converts to cortisol in some cases?
did you have dry eyes alongside a dry mouth? from my understanding its both dry eyes and dry mouth in sjogrens. if you only have one of those, it may be something else?

@EchoTango

I may have spoken too soon. So I did feel dreadful but I've bounced back. I really cringe at trying to report my problems because they do tend to come and go, the improvement may have been hormonal. I am a woman, and I do notice the paratoid gland swells around ovulation and/or afterwards (recent development since 2021, before it was mostly dry eyes and an increase in digestive issues, fatigue and joint pain- though the joint pain is not reappearing since adopting bioenergetics from carnivore). I was taking progesterone at night (and when I first got it- mega dosing during luteal multiple times a day) but was not taking it in the morning until recently (with very small doses of pregnenalone and dhea) as recommended by @Nemo. I also have started taking smaller doses of desiccated thyroid all through out the day instead of one small scoop in the morning as well. I think thyroid and progesterone have helped halt arthritis and the deterioration of my spine.

Because my symptoms often get worse during the luteal phase- especially fatigue- and I believe your immune system is hampered(?) during luteal, the parasite idea maps pretty well.

I took anti-histamines June 27-30, ivm (horse paste) 28 and 29. Felt better during but could not sleep well. Swelling went down but I felt my cortisol was off track. (I started taking holy basil tea at night and in mornings soon after).

July 2nd, felt like garbage, seriously contemplating just taking the hit and going to the Dr. Gland swelling back, heart pain, frequent urination of very small volumes, feeling like something is bothering/sitting in my bladder.
I decided to try charcoal (with ACV and a tbsp of coconut oil) before bed followed by some senna tea.

July 3rd, feeling pretty good. A little heart pain. Passed some clear flesh-like object during urination (sorry tmi). And I've been feeling really great since the charcoal. I have regained my tolerance to different foods and alcohol. (When I get really sick I cannot drink green tea without getting pain/nausea - probably liver related).

Could be endotoxins, could be hormones changing (today is day 1 for me), could be lowering cortisol through holy basil tea and meditation.

does progesterone convert to cortisol for you? or does it lower it and cause any negative effects? does it increase dry eyes for you.
im a male and in my case, pure encapsulations drastically, drastically worsened my dry eyes/dry mouth, in just 10 days. i took 50mg a day, my dry eyes got so bad and the eyelids shrunk (seems they shrink/enlarge depending on eye moisture), i couldnt even place contacts in the eyes. also put on 12 pounds of weight in those 10 days of pregnenolone. i dont think it's safe to use. now very small doses of progesterone and dhea, like the 3mg prog/1mg dhea in the cortinon product, maybe those, taken just once or twice a day can provide some benefit. pregnenolone, in supplement form is like poison for me. the pure encapsulations brand is very high end, supposed to be highly pure, highly tested, priced well above other brands on the market...

 

[skuabird]

does progesterone convert to cortisol for you? or does it lower it and cause any negative effects? does it increase dry eyes for you.
im a male and in my case, pure encapsulations drastically, drastically worsened my dry eyes/dry mouth, in just 10 days. i took 50mg a day, my dry eyes got so bad and the eyelids shrunk (seems they shrink/enlarge depending on eye moisture), i couldnt even place contacts in the eyes. also put on 12 pounds of weight in those 10 days of pregnenolone. i dont think it's safe to use. now very small doses of progesterone and dhea, like the 3mg prog/1mg dhea in the cortinon product, maybe those, taken just once or twice a day can provide some benefit. pregnenolone, in supplement form is like poison for me. the pure encapsulations brand is very high end, supposed to be highly pure, highly tested, priced well above other brands on the market...

I'm not sure if progesterone is converted...but I doubt it because it does allow me to fall asleep (usually). Does not seem to cause dry eyes for me. My dry eyes were probably the very worst on a carnivore diet, vitamin c seemed to help a bit at that time *esp the liposomal ones (but you said you had problems with choline?) It got so bad I couldn't wear contact lenses a couple days a month (and then when I did they'd get dry/stuck in my eyes a lot)

Im using double wood brand for pregnenalone and dhea. I empty the capsules into a little glass jar and dab a finger in. I did gain a lot of weight since changing diets but I dont think its related to the pregnenalone particularly. (But maybe). Could be conversion to estrogwn thats the problem?

Have you ever tried coconut oil or castor oil on and around your eyes? Even though it didn't help in a permanent way it did feel really refreshing for some reason.

You sound like you're really suffering with dry eyes. I wish I knew something that could help. My eyes have not been so bad I couldn't wear contacts since my carnivore diet.

 

[Dr. B]

I'm not sure if progesterone is converted...but I doubt it because it does allow me to fall asleep (usually). Does not seem to cause dry eyes for me. My dry eyes were probably the very worst on a carnivore diet, vitamin c seemed to help a bit at that time *esp the liposomal ones (but you said you had problems with choline?) It got so bad I couldn't wear contact lenses a couple days a month (and then when I did they'd get dry/stuck in my eyes a lot)

Im using double wood brand for pregnenalone and dhea. I empty the capsules into a little glass jar and dab a finger in. I did gain a lot of weight since changing diets but I dont think its related to the pregnenalone particularly. (But maybe). Could be conversion to estrogwn thats the problem?

Have you ever tried coconut oil or castor oil on and around your eyes? Even though it didn't help in a permanent way it did feel really refreshing for some reason.

You sound like you're really suffering with dry eyes. I wish I knew something that could help. My eyes have not been so bad I couldn't wear contacts since my carnivore diet.

oh my dry eyes improved when i took out the pregnenolone and iodine no doubt, but they only improved moderately, im still nowhere near how my eyes were pre iodine/pregnenolone, although i can wear contacts if i want to. they are still shrunken and dried up, it seems like my eyelids expand/shrink depending on eye moisture level.
i dont have a dry mouth but thats because ive had a stainless steel permanent retainer in my mouth from over 10 years ago, its on the backs of some of my teeth. i got it after braces. actually, ever since i got braces, and then the permanent metal wire retainer, both those things seem to unnaturally increase saliva production, when i had braces i would start drooling if i left my mouth open for even a few seconds or so. its probably the presence of the metal, encourages the body to produce more saliva to get rid of it somehow.
the options after braces were to get a removable plastic retainer you put on at night or even during the day if not eating, or a permanent wired metal retainer. im thinking both have drawbacks, the wire retainer being stainless steel means there's probably small amounts of maybe nickel, or tin, which over time leech into the body? like maybe a few micrograms per day are ingested due to having the permanent wire in there. I suppose its better than the plastic retainer which you may bite into and, being plastic, you may be ingesting some plastic everyday while its in your mouth?
choline only has an effect if its supplement form or creatine. if its high choline foods like liver, eggs, milk, i dont get the effects like increased anxiety, oily skin/hair, increased acne, maybe some increased salivation.

eh im not sure, the pregnenolone could turn to estrogen or probably cortisol, its hard to say if you did a big change of diet, but at the same time if you changed to a Peaty style of diet you shouldnt be gaining weight unless your calorie intake significantly increased. even then it shouldnt be the diet since switching over to a peat diet should increase metabolism.

 

[EchoTango]

does progesterone help your symptoms? do you think it increases or converts to cortisol in some cases?
did you have dry eyes alongside a dry mouth? from my understanding its both dry eyes and dry mouth in sjogrens. if you only have one of those, it may be something else?

Progesterone has been a panacea for me. It does help my eyes to produce more moisture. And for me it is really only the eye that had the terrible cyclogel poisoning that is sensitive. I think cyclogel caused a lot of trauma. It felt like the eye was exploding. My mouth is never dry.

I believe for me my imbalances arose from major life changes and chronic stress, some of them very positive, some draining, like living in more than a dozen different places, and enduring a toxic graduate school environment.

I've been taking progesterone since January, and will continue. I apply the medicine through every route possible. I mix a powdered product (anywhere from 400-800mg) with a coconut lotion and some annatto vitamin e to apply to my skin. I still have regular cycles and my health is much better. I can feel it working it's magic restoring my tissues and glands, it is very soothing like being in the womb again.

 

[Dr. B]

Progesterone has been a panacea for me. It does help my eyes to produce more moisture. And for me it is really only the eye that had the terrible cyclogel poisoning that is sensitive. I think cyclogel caused a lot of trauma. It felt like the eye was exploding. My mouth is never dry.

I believe for me my imbalances arose from major life changes and chronic stress, some of them very positive, some draining, like living in more than a dozen different places, and enduring a toxic graduate school environment.

I've been taking progesterone since January, and will continue. I apply the medicine through every route possible. I mix a powdered product (anywhere from 400-800mg) with a coconut lotion and some annatto vitamin e to apply to my skin. I still have regular cycles and my health is much better. I can feel it working it's magic restoring my tissues and glands, it is very soothing like being in the womb again.

where do you get the annatto vitamin E from?
so you dont take progesterone orally, only topically?
do you take any dhea or other hormones/supplements

 

[EchoTango]

where do you get the annatto vitamin E from?
so you dont take progesterone orally, only topically?
do you take any dhea or other hormones/supplements

I do take orally, vaginally and transdermally. I got my vitamin e from Forefront Health. I dislike their brash sales tactics very much, but have found some of the products to be reliable and of good quality despite that. People complain about the vitamin e pump, but I like it because it makes it easier to form the various delivery methods containg pure progesterone powder (that I get from suchlabs) I like to mix my own form of progest-e because I don't like using vitamin e from soy.

 

[Dr. B]

I do take orally, vaginally and transdermally. I got my vitamin e from Forefront Health. I dislike their brash sales tactics very much, but have found some of the products to be reliable and of good quality despite that. People complain about the vitamin e pump, but I like it because it makes it easier to form the various delivery methods containg pure progesterone powder (that I get from suchlabs) I like to mix my own form of progest-e because I don't like using vitamin e from soy.

interesting theyve got some interesting products on their website.
i have thornes ultimate E product which, they say its molecularly distilled to remove all traces of soy even though its originally from soy.
have you tried their thyroid, coffee or other products? it seems they have a very limited selection of just 16 products to choose from? which i think is a good sign and shows theyre focusing on specific products. some other companies youll go to their website and they have thousands of different herbs, vitamins, other products each listing out tons of benefits from it.

 

[EchoTango]

do you take any dhea or other hormones/supplements

I tried taking pregnenolone (small dose about 10-25mg/day) for a few days and the first day was good, but the next 2 days it made me all hyped up. I was hoping to get DHEA through conversion of pregnenolone, if I needed it, but I have discontinued that experiement for now, because I don't want to get stressed.

 

[EchoTango]

interesting theyve got some interesting products on their website.
i have thornes ultimate E product which, they say its molecularly distilled to remove all traces of soy even though its originally from soy.
have you tried their thyroid, coffee or other products? it seems they have a very limited selection of just 16 products to choose from? which i think is a good sign and shows theyre focusing on specific products. some other companies youll go to their website and they have thousands of different herbs, vitamins, other products each listing out tons of benefits from it.

The guy from Forefront is a follower of Peat. I have tried their b-complex, vitamin-e, vitamin-k, progesterone, and vitamin a,d,k and they have been reliable. Their marketing tactics are annoying, but I try to give them the benefit of the doubt, that maybe they are trying to help people with brain fog to remember to take their supplements.. Since, really the quality has been good. I get thyroid from lifegivingstore,progest from suchlabs and some things to try from idealabs.

have you tried the cortinon? I am interested in how the combination of DHEA and progesterone operates.

 

[Dr. B]

The guy from Forefront is a follower of Peat. I have tried their b-complex, vitamin-e, vitamin-k, progesterone, and vitamin a,d,k and they have been reliable. Their marketing tactics are annoying, but I try to give them the benefit of the doubt, that maybe they are trying to help people with brain fog to remember to take their supplements.. Since, really the quality has been good. I get thyroid from lifegivingstore,progest from suchlabs and some things to try from idealabs.

have you tried the cortinon? I am interested in how the combination of DHEA and progesterone operates.

who is he, is he on this website also? how did he manage to create all these products. what marketing tactics do you mean?

the dhea doesnt seem to aromatize, but this seems it could be both due to progesterone and due to how low the dosage of dhea is. it has a good small amount of dhea at 1mg per drop and progesterone 3mg per drop. i have to try it some more before knowing for sure. it doesnt have the same crazy side effects from 50mg-100mg pregnenolone, but that could simply be since the dosage is very low.

 

[EchoTango]

who is he, is he on this website also? how did he manage to create all these products. what marketing tactics do you mean?

the dhea doesnt seem to aromatize, but this seems it could be both due to progesterone and due to how low the dosage of dhea is. it has a good small amount of dhea at 1mg per drop and progesterone 3mg per drop. i have to try it some more before knowing for sure.

Like saying there is a sale going on with a clock counting down, markdowns, but the price never changes. He is Tom Brimeyer and he also writes articles that are condensed from Peat's ideas. They are clearly written so I can see why they may appeal to some and he offers a meal routine template too that may help those overwhelmed with how to implement these ideas in a practical manner. Of course it is best to read from Peat himself.

Your report of the cortinon sounds promising, I hope it continues to be helpful. From what I have read about it, it seems like a little can go a long way in such a complimentary formulation.

 

[Dr. B]

I do take orally, vaginally and transdermally. I got my vitamin e from Forefront Health. I dislike their brash sales tactics very much, but have found some of the products to be reliable and of good quality despite that. People complain about the vitamin e pump, but I like it because it makes it easier to form the various delivery methods containg pure progesterone powder (that I get from suchlabs) I like to mix my own form of progest-e because I don't like using vitamin e from soy.

finally, long time
can you discuss here or over DM have you used forefront healths dessicated thyroid product
I couldnt remember who introduced me to the site i was asking random people about their thyroid thinking they mentioned it before...
i ordered their 130mg thyroid capsules curious to see how well they work as far as boosting temps, digestion, energy, eyesight etc...
whats the source for their vitamin E, and what do you mean by brash sales tactics they dont seem to be aggressive with marketing?

 

[EchoTango]

finally, long time
can you discuss here or over DM have you used forefront healths dessicated thyroid product
I couldnt remember who introduced me to the site i was asking random people about their thyroid thinking they mentioned it before...
i ordered their 130mg thyroid capsules curious to see how well they work as far as boosting temps, digestion, energy, eyesight etc...
whats the source for their vitamin E, and what do you mean by brash sales tactics they dont seem to be aggressive with marketing?

I do remember talking with you about FH. I have not tried their thyroid yet. Right now my supply of thyroid comes from Life Giving Store, but it is loose powder (pro is that my dose during summer is too low for a capsule, con is that I have to measure dose with a scale). I have tried the FH brand progest-e type product, b-complex, vitamin K, ADK, and Vitamin E. My experience being that they were good quality.

I remember reading on the site that the vitamin E is sourced from annatto, but upon revisiting can no longer find that tidbit. If possible I try to boycott soy-based things because it is such a dominant mono-culture crop.

I think the marketing tactics suit some people, but not me. I think they have good things to offer, I suppose they don't want to get lost in the sea of internet. Suppose I can't blame them.

PS- if like their other products FH thyroid is probably worth a try if you are looking for a whole NDT product.

 

[Dr. B]

I do remember talking with you about FH. I have not tried their thyroid yet. Right now my supply of thyroid comes from Life Giving Store, but it is loose powder (pro is that my dose during summer is too low for a capsule, con is that I have to measure dose with a scale). I have tried the FH brand progest-e type product, b-complex, vitamin K, ADK, and Vitamin E. My experience being that they were good quality.

I remember reading on the site that the vitamin E is sourced from annatto, but upon revisiting can no longer find that tidbit. If possible I try to boycott soy-based things because it is such a dominant mono-culture crop.

I think the marketing tactics suit some people, but not me. I think they have good things to offer, I suppose they don't want to get lost in the sea of internet. Suppose I can't blame them.

PS- if like their other products FH thyroid is probably worth a try if you are looking for a whole NDT product.

isnt that product a ripoff compared to others like forefront health
forefront health is 130mg per capsule, 90 capsules for $35... that life giving store is just a powder form (less expensive to make than capsules) and its 5 grams for $35. 5 grams would be just 38 capsules of 130mg each

 

[EchoTango]

isnt that product a ripoff compared to others like forefront health
forefront health is 130mg per capsule, 90 capsules for $35... that life giving store is just a powder form (less expensive to make than capsules) and its 5 grams for $35. 5 grams would be just 38 capsules of 130mg each

It is a good point that the FH NDT would be over double the product for the price at 11.7g/$35. I wouldn't necessarily call LGS a ripoff, but in this context it seems overpriced.
I am not allergic to the excipients in FH thyroid (Other ingredients include: rice flour, cellulose, dicalcium phosphate, silica, gelatin, and purified water.) But it is good that maybe people who don't want that have options.. I'm glad there are enough quality options to choose from.

When my supply runs out, I'll certainly reconsider getting it at FH. Thanks for the calculations.

Now I complain about FH marketing tactics, but I seem to help promoting them a lot..

 

[skuabird]

Now I complain about FH marketing tactics, but I seem to help promoting them a lot..

Everything is on sale! Is that just a marketing thing or a legit once a year type of thing? We dont have money right now. I hope when we do FH will still have good prices for thyroid and progesterone.

 

[EchoTango]

Everything is on sale! Is that just a marketing thing or a legit once a year type of thing? We dont have money right now. I hope when we do FH will still have good prices for thyroid and progesterone.

Yes, everything remains on sale so long as I have paid attention which is over a year :) That is what I mean about marketing. It has also been convenient to get a discount using the subscribe option and fairly easy to cancel if need be.

 

[EchoTango]

isnt that product a ripoff compared to others like forefront health
forefront health is 130mg per capsule, 90 capsules for $35... that life giving store is just a powder form (less expensive to make than capsules) and its 5 grams for $35. 5 grams would be just 38 capsules of 130mg each

Just looked at my invoice from when I purchase LGS thyroid last year and they were previously charging $25/5grams. So it has gone up $10. That is a big mark up. I wonder if with everything going on, it is getting difficult to supply the grass-fed organs from New Zealand? FH remains reasonable though.