So I guess my dry eyes cold hands feet
rashes and flushing are lupus
from accutane
what can I do? Anyone have lupus and did they clear rash up? Will lasers help or make worse

i csnt take meds for lupus too many side effects

Just had my first neurologist appointment today...

and let me just say there are still SO many great doctors out there looking to help us. She was an absolute gem and listened for an entire HOUR about my whole story and ordered SO many blood tests for me, MRIs, CTs, and an EMG..

She's really on board with this autoimmune stuff and wants to dive further. Funny part is she's an NP cause it was the earliest available appointment and I said sure why not and she knows more and has explained more than half of the doctors I've talked to. My blood pressure was really high today in my appointment. Will keep you guys updated on my tests.

On

4 minutes ago, Colinboko said:

Just had my first neurologist appointment today...

and let me just say there are still SO many great doctors out there looking to help us. She was an absolute gem and listened for an entire HOUR about my whole story and ordered SO many blood tests for me, MRIs, CTs, and an EMG..

She's really on board with this autoimmune stuff and wants to dive further. Funny part is she's an NP cause it was the earliest available appointment and I said sure why not and she knows more and has explained more than half of the doctors I've talked to. My blood pressure was really high today in my appointment. Will keep you guys updated on my tests.

Glad to hear some doctors are ttying
on blood prrssure
what was it? Was it too number
mine use to be too
mine was anxiety

Just going to keep posting some information about this until I feel its not a factor, which I dont yet.
Vitamin A, Vitamin D, and K2 are all related. We have all experimented plenty with vitamin A and D over the years.
This could be that missing x factor.

Where k2 (mk-4) accumulates is pretty striking. Menaquinones also accumulate heavily in the large intestine

Phylloquinone and menaquinone-4 distribution in rats: synthesis rather than uptake determines menaquinone-4 organ concentrations.

https://www.ncbi.nlm.nih.gov/pubmed/8632229

Abstract

The Essential Nutrition brand of Vit K2 is the Mk- 7 type!!

Is there a big difference between this type and the Mk-4 type??

Im unsure of the difference...

51 minutes ago, TrueJustice said:

The Essential Nutrition brand of Vit K2 is the Mk- 7 type!!

Is there a big difference between this type and the Mk-4 type??

Im unsure of the difference...

What they are saying in that study and other studies I have looked at is basically mk-4 distribution is not based on dietary intake of k2.
mk-7 should convert to mk4 via a k2 analog which is menadione. The long chain menaquinones (mk7) are what is synthesised by bacteria and then through a separate conversion process converted to mk4 at different tissue sites.
mk7 has a very long half life of 3 days. mk4 has a very short half life.
there isnt enough conclusive evidence if one is superior to the other.
you have a mk4 supplement (possibly most important menaquinone) that avoids any conversion process.
Or you have mk7 that hangs around for days and is possibly available on call to convert to mk4, and long chain menaquinones could be involved in yet unknown processes and interact with bacteria more so than mk4( mk4 is short chain)
basically all this means is experimenting with one or the other, or both.

im looking at mk-7 first. ive been taking a synthetic version at 300mcg to 450mcg so far, per day. its been slowing down my bowels though, but so do probiotics on average. A harvard study showed probiotics slow gut transit time by 12 something hours, but increase the amount of weekly bowel movements. Im going to stick with it awhile longer before looking at mk4. A long chain menaquinone (like mk7) is what might have been eliminated with the acne bacteria. This is what the body produces on its own, and then it gets synthesized to mk4. The body is not capable of producing mk4 from nothing. Pretty sure.

So anything I can do for drug induced sjorgens lupus?
not confirmed but my sed rate use to be 10 range is 0-10 no one said shit
and my Ana was speckled diffise

now it's positive Ana
speckled pattern

anyways I don't have joint pain luckily
i mean I lay down my ears hurt sometimes neck stiff
hands lock up here and tjere
use to have low back pain but nothing that bad
i am fatigued when waking up because I wake up every 2 hours

severe dryness though and rashy flushed face cold hands feet

anyways anything I can do I am not taking antimilarial drugs as I see ppl saying hair loss aging skin and more

1 hour ago, Nemesisbrady said:

So anything I can do for drug induced sjorgens lupus?
not confirmed but my sed rate use to be 10 range is 0-10 no one said shit
and my Ana was speckled diffise

now it's positive Ana
speckled pattern

anyways I don't have joint pain luckily
i mean I lay down my ears hurt sometimes neck stiff
hands lock up here and tjere
use to have low back pain but nothing that bad
i am fatigued when waking up because I wake up every 2 hours

severe dryness though and rashy flushed face cold hands feet

anyways anything I can do I am not taking antimilarial drugs as I see ppl saying hair loss aging skin and more

Tell them you'd like to be treated for it. Or experiment with immunosuppressive drugs...

Idk I really don't feel safe considering accutane did this to us

but I do want relief
however he immune meds don't help dry eyes and dry nose skin
that and insomnia and rash flushing is my biggest issue

Ana negative. Now I don't get this
it was positive speckled month ago. Now negative
all symptoms of sjorgens
fuckin drug
sOrry for swearing

just got medicinal marijuana however it makes me dry and paranoid so paranoid so I have to maybe take oil

Who here has actually had ANA testing done?

besides @guitarman01

Also @guitarman01,

I'm going to ask for that AAG test for shits and giggles. But I have been doing lots of research on it and I really don't think my problem has to do with autonomic nerves...

My doctor said that if I'm still gagging when I brush my tongue, sweating, and don't have orthostatic hypotension then it's a clear indicator that the autonomic system is generally okay. And I kind of agree with her. I was never a "sweater" much before accutane anyways.. and I feel like I sweat the same amount. It just evaporates quickly which is obviously down to low oil production I would assume?

On 8/23/2017 at 9:09 AM, Colinboko said:

Also @guitarman01,

I'm going to ask for that AAG test for shits and giggles. But I have been doing lots of research on it and I really don't think my problem has to do with autonomic nerves...

My doctor said that if I'm still gagging when I brush my tongue, sweating, and don't have orthostatic hypotension then it's a clear indicator that the autonomic system is generally okay. And I kind of agree with her. I was never a "sweater" much before accutane anyways.. and I feel like I sweat the same amount. It just evaporates quickly which is obviously down to low oil production I would assume?

You have alot of the symptoms I have. This test, [Edited link out]and the actylcholine gangliontic neuronal antibody might cover alot more then what she mentions or is aware of.
Have you had testing for orthostatic hypotension?
The most accurate test involves tilt table testing. Nerve pain, nerve damage, nerve disconnections, muscle weakness, head pressure, ED, hair loss even breathing could all be related to this antibody. So I would strongly enforce trying to get this test and just site multiple people that took accutane have tested positive for this specific antibody.

Orthostatic hypotension may be acute or chronic, as well as symptomatic or asymptomatic. Common symptoms include dizziness, lightheadedness, blurred vision, weakness, fatigue, nausea, palpitations, and headache. Less common symptoms include syncope, dyspnea, chest pain, and neck and shoulder pain.

Head-up tilt-table testing can aid in confirming a diagnosis of suspected orthostatic hypotension when standard orthostatic vital signs are nondiagnostic
In addition to assessing for symptoms of orthostasis, the physician should elicit symptoms of autonomic dysfunction involving the gastrointestinal and genitourinary systems.

autoimmune GI dysmotility
Investigating unexplained weight loss, anorexia, nausea, vomiting, constipation, diarrhea, early satiety, bloating or oropharyngeal thrush

New Hair Growth Mechanism Discovered

https://www.ucsf.edu/news/2017/05/407121/new-hair-growth-mechanism-discovered

This could be all the tooth and gum problems people start to have. This could be regulated autonomic by the brain.
(the hypothalamus/parotid axis) relays endocrine signaling to the parotid gland.This is saliva flow, clean mouth equals clean teeth and gums.

Its just a blood test. Its worth pushing to get this. One more person tests positive I would consider it a big deal.

2 hours ago, Colinboko said:

Who here has actually had ANA testing done?

besides @guitarman01

Ana as in antibody? I'm not sure what u meant

but my Ana was speckled in 2011
then negative
last mobth diffuse positive
now negative lmao
so told I'm healthy

Or or do I mean like autonomic thing?

I would get this test done

but my estrogen t levels Ana igg4 are all high and they brush me off

so no point in more shit

probably high for me to tho

On 8/23/2017 at 10:15 AM, guitarman01 said:

You have alot of the symptoms I have. This test, [Edited link out]and the actylcholine gangliontic neuronal antibody might cover alot more then what she mentions or is aware of.
Have you had testing for orthostatic hypotension?
The most accurate test involves tilt table testing. Nerve pain, nerve damage, nerve disconnections, muscle weakness, head pressure, ED, hair loss even breathing could all be related to this antibody. So I would strongly enforce trying to get this test and just site multiple people that took accutane have tested positive for this specific antibody.

Orthostatic hypotension may be acute or chronic, as well as symptomatic or asymptomatic. Common symptoms include dizziness, lightheadedness, blurred vision, weakness, fatigue, nausea, palpitations, and headache. Less common symptoms include syncope, dyspnea, chest pain, and neck and shoulder pain.

Head-up tilt-table testing can aid in confirming a diagnosis of suspected orthostatic hypotension when standard orthostatic vital signs are nondiagnostic
In addition to assessing for symptoms of orthostasis, the physician should elicit symptoms of autonomic dysfunction involving the gastrointestinal and genitourinary systems.

autoimmune GI dysmotility
Investigating unexplained weight loss, anorexia, nausea, vomiting, constipation, diarrhea, early satiety, bloating or oropharyngeal thrush

New Hair Growth Mechanism Discovered

Faulty Immune Cells May Play Role in Alopecia, Other Forms of Baldness

https://www.ucsf.edu/news/2017/05/407121/new-hair-growth-mechanism-discovered

This could be all the tooth and gum problems people start to have. This could be regulated autonomic by the brain.
(the hypothalamus/parotid axis) relays endocrine signaling to the parotid gland.This is saliva flow, clean mouth equals clean teeth and gums.

Its just a blood test. Its worth pushing to get this. One more person tests positive I would consider it a big deal.

I planned to get it tested if other things come back negative for sure. Didn't mean to offend you or your research on this by any means. I guess it just seems like something that is SUPER rare (obviously accutane can do a lot so I'm not surprised). But I'll still get it done, no worries.

^^^ this was mentioned with me
ans I do have frequent urination
dry eyes
flushing
slee issues

i use to be constipated
and i use to never sweat

now I sweat when anxious and hot which is normal

Just had soooo many tests done. 17 vials worth.. YIKES

Will keep you guys updated. If nothing shows on these I'm going to ask for the AcHr ganglionic one. I just get scared cause what if it isn't covered by insurance?

9 hours ago, Colinboko said:

I guess it just seems like something that is SUPER rare (obviously accutane can do a lot so I'm not surprised).

CFS that you have been looking at has shown some possible evidence of involvement of autonomic dysfunction. Im looking for any hard proof or blood markers of some things we seem to have in common.
You can go back to mayo's test link there and call and verify all the cpt codes with your insurance company beforehand. its diagnostic so it should be covered. Tell your dr you already checked with insurance and its covered if she gives you any excuses not to test. dont know if they normally test or are capable of treating this where you are going, so if she tells you this as well as a reason not to test, just ask if you can at least get the blood test and if it comes back positive, you can be referred to a clinic/university that does.

Being that you're in illinois have you been tested for lyme too btw?
Every single time ive had a western blot blood test, ive had one igm antibody come back positive. Could just be a false positive, but its very consistent.

2 hours ago, guitarman01 said:

CFS that you have been looking at has shown some possible evidence of involvement of autonomic dysfunction. Im looking for any hard proof or blood markers of some things we seem to have in common.
You can go back to mayo's test link there and call and verify all the cpt codes with your insurance company beforehand. its diagnostic so it should be covered. Tell your dr you already checked with insurance and its covered if she gives you any excuses not to test. dont know if they normally test or are capable of treating this where you are going, so if she tells you this as well as a reason not to test, just ask if you can at least get the blood test and if it comes back positive, you can be referred to a clinic/university that does.

Being that you're in illinois have you been tested for lyme too btw?
Every single time ive had a western blot blood test, ive had one igm antibody come back positive. Could just be a false positive, but its very consistent.

Just got tested today for it actually! Isn't the only cause ticks though?

28 minutes ago, Colinboko said:

Just got tested today for it actually! Isn't the only cause ticks though?

yes, you definitely don't get lyme from accutane. my girlfriend though found a tick in her head just from walking from our house to her parents, and we live in the city. they normally do the elisa test first, there is also a western blot blood test. ive lit up a few markers on both tests, not enough to be positive though. It could relate to accutane, being that some markers are nonspecific and showing that our body is fighting something, idk. it could also just be false positives found in the normal population.

here is something else i wanted to post for all.

On 8/22/2017 at 9:15 PM, guitarman01 said:

This could be all the tooth and gum problems people start to have. This could be regulated autonomic by the brain.
(the hypothalamus/parotid axis) relays endocrine signaling to the parotid gland.This is saliva flow, clean mouth equals clean teeth and gums.

Going back to this, clean mouth could equal clean sinuses and clean gut. I believe they are all related.
This is where I pulled this from.

Vitamin K2 and its Impact on Tooth Epigenetics

https://www.intechopen.com/books/vitamin-k2-vital-for-health-and-wellbeing/vitamin-k2-and-its-impact-on-tooth-epigenetics
Present hypotheses now focus both on the oral environment and other organs, like the nervous system and brain. The tooth is subjected to shear forces, nourishing and cleansing, and its present support system (the hypothalamus/parotid axis) relays endocrine signaling to the parotid gland. Sugar consumption enhances hypothalamic oxidative stress (ROS), reversing dentinal fluid flow, thus creating an enhanced vulnerability to the oral bacterial flora. The acid, produced by the oral bacterial flora, then leads to erosion of the dentine, and an irreversible loss of dental enamel layers. This attack brings about inflammatory responses, yielding metalloproteinase-based dissolution. However, vitamin K2 (i.e. MK-4/MK-7) may come to the rescue with its antioxidant property, locally (mouth cavity) or systemically (via the brain), thus sustaining/preserving hormone-induced dentinal fluid flow (encompassing oxidative stress) and boosting/magnifying bodily inflammatory responses. However, sugars may also reduce the tooths natural defences through endocrine signaling, thus enhancing acid-supported enamel dentine erosion. Vitamin K2 sustains and improves the salivary buffering capacity via its impact on the secretion/flow of calcium and inorganic phosphates.

^this is showing me k2 might or could be involved in autonomic functions.

Again here is a random k2 review on amazon, there are many more like this when describing tooth and gum health.
They are also looking at this as sole treatment for rheumatoidarthritis. A autoimmune disease.
This is an excellent product. I have been using it for 3 months. I know it's doing the job of putting the calcium where it belongs because my teeth are smooth and slippery and mouth feels soclean. Even before brushing in the morning. Because it is working so well in my mouth, I know it is probablycleaningmy arteries. And my RA is showing positive results. ( I do take other minerals as well for the RA but it needed the k2 mk4 to go with them). I do take 3 capsules a day because of my personal need for the total of 45 MG. I have had no side effects. I wouldn't be without this product.

^clean mouth on k2, this is showing me menaquinones might have a positive balance with some bacteria. or keep in check.

Back in year 2000 till about 2010 I used to get these stains forming onfront 2 top teeth, they were easily buffed off when visiting dentist every 6 months but he was unsure what was causing it??

I take oral health serious going to dentist twice a year, I've actually just been 4 times in last month to get all my mercury fillingsreplaced- I feel really good having done this, highly recommended

I do think good oral health is important, it surely helps the gut and if you have a clean mouth you should have less gut problems in theory especially later in life...

Just testedtotal, free and carnitine esters. All are normal.

No surprise i guess. Its been years since I used Accutane and ive taken carnitine a few times since.

My biotin test still needs interpretation. I feel it was too kow although within normal range.

My advice to you all. If you suspect a deficiency, get it tested. If your Doc wont do it, use an online lab like healthlabs or directlabs but there are others.

Will you please let me know the results of your biotin test after you've interpreted it.
kind regards Brendan

Update

my urine iodine levels were almost 2,000
should be under 500

i feel the same I've felt for 10 years tho
snxious hot insomnia dry

so doubt it's the cause

15 hours ago, MonsterDiesel said:

My biotin test still needs interpretation. I feel it was too kow although within normal range.

so you've had the biotin blood test, in range. Ive had the biotinidase enzyme blood test. Also in range.

2 minutes ago, guitarman01 said:

15 hours ago, MonsterDiesel said:

My biotin test still needs interpretation. I feel it was too kow although within normal range.

so you've had the biotin blood test, in range. Ive had the biotinidase enzyme blood test. Also in range.

I couldnt convince my Doc to run biotinidase. Wish I could test it on my own