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How do people get Pots??
Are they born with it?
Could be worth investigating I guess, right now though we have so many different theories and angles going on this thread it's impossible to keep up?
How are those who are addressing CFS going? Those taking a drug, NOT just a supplement??
Keen to know how you're going....
12 minutes ago, TrueJustice said:How do people get Pots??
Are they born with it?
Could be worth investigating I guess, right now though we have so many different theories and angles going on this thread it's impossible to keep up?
How are those who are addressing CFS going? Those taking a drug, NOT just a supplement??
Keen to know how you're going....
Pots can be a primary disorder or secondary and a lot of the secondary causes are being announced as autoimmune related. Many people have responded to prednisone/immunosuppressant therapies
We need to close in on the autoimmune aspect of this once and for all to be completely honest. Set other theories aside for the time being.Funny thing too is there was an entire thread talking about people getting diagnosed with PoTs after accutane...
On 8/25/2017 at 7:42 PM, TrueJustice said:Right now I want to see a Neurologist but I don't know what tests to ask for??
I can explain my symptoms easily enough:
# light sensitivity
# head pressure ( frontal lobes )
# extreme tiredness
# floaters in eyesBased on what's been done by others and the length of time ( 20 years post tane ) I'm going to say No to a spinal tap, No to an MRI unless someone can convince me otherwise!?
What would be the test one should ask for to see blood flow in frontal lobes though?? What are the tests called that showed brain damage/interference in Accutane patients, the ones that have been included in reports etc - does anyone know??
20 years post tane with your symptoms, Id get a Mri if it doesn't put you out too much cost wise. Make sure your able to look at the full report afterwards. This ties into whats been talked about recently with possible reduced blood flow to the brain. If there is any ongoing cerebral vascular issue, this could take its toll after a period of time. Loss of brain volume and neuron connections could be apparent on a MRI especially if its been going on for 20 some years. That feeling of head pressure, something is going on. It would be good for you to get a MRI over some people because of your advancing age and ongoing symptoms, as opposed to people that more recently took the drug that have the "head pressure" where gradual effects might not yet be apparent.
26 minutes ago, TrueJustice said:Yes but what came of those in the past who had frontal lobe blood flow issues??
All well and good to get diagnosed but then what??
Does anyone know what they followed up with in relation to these patients tested and proven to have brain issues??
The point is to find some real tangible things in common, make the connections, then go from there. We can only do so much just thinking about it.
im not sure who you are talking about, but there is no-one that I know of on here diagnosed with "frontal lobe blood flow issues" the best test to possibly look at blood flow in the brain or gold standard might be a ct scan with contrast, but there is a very small chance it can induce a stroke, so thats probably not going to happen. Theres been some abnormal spectral scans in the studies and that some with CFS have had. Babis had a PET head scan that showed some low grade brain inflammation was going on, interpreted properly only by Mayo Clinic. Theres no chance of getting these other tests though before a MRI from a neurologist, so thats where it has to start. Its called neurodegeneration, you want to catch this if its happening. Thats my point.
Theres also the POTS thing, theres alot in the past postings, I just dont have the time to go over it all again.
This test that I just mentioned a few posts back also could assist in diagnosing POTS , also there is a test called tilt table testing, to check changes in blood pressure when sitting and standing, which might look into reduced blood flow to the brain.
http://www.questdiagnostics.com/testcenter/BUOrderInfo.action?tc=93881&labCode=WDL
The G-nAChR antibody assay can also identify patients with limited forms of dysmotility, diabetic autonomic neuropathy, or postural tachycardia syndrome(POTS)
You make valid points, I'm just frozen in deciding where to go next....I'm exhausted. I threw everything at gut last year and got nowhere and yet there are still people swearing our problem is gut related!!?
You're right in that no one currently on forum has frontal lobe blood flow diagnosed but there have been tests posted numerous times on this forum over the years, don't ask me which pages but the tests posted talk of tane brain interference- where are these people now? What did they do about it??
Just this week I saw a Vascular surgeon about my varicose veins which I think stem from my tane/CFS syndrome. He has no clue on tane, his response to CFS even though I said to him I know it's not your field, I wanted his opinion anyway - he said diet, exercise, that was it. To the question of what causes varicose veins, again he said no one knows. I was hoping for more like do you know about Vit K deficiency and calcification issues - these people just don't know, I can't even ask anymore with any level of hope and yet I'm I'm not blaming him - they just simply don't have the knowledge....
Anyway, he says I need to have both legs operated on to remove the veins, if left untreated apparently it can start to negative affect the organs, I went to see him for more insight to our condition, but what do you do?
Thats why im asking about CFS, if I could get some relief I'd be able to seek out more specialist but I'm fucking exhauted
I think we could live with some of the physical side effects, its the mental ones we cannot tolerate. Thats why you should consider getting the MRI, especially if you never had one. I wouldnt recommend it for everyone, but for the people that are getting older that are still affected, we need to see if something is going on.
9 minutes ago, guitarman01 said:I think we could live with some of the physical side effects, its the mental ones we cannot tolerate. Thats why you should consider getting the MRI, especially if you never had one. I wouldnt recommend it for everyone, but for the people that are getting older that are still affected, we need to see if something is going on.
Literally what I thought the other day. If my mental sides were gone, I could most definitely "move on". The thing is I feel like everything is tied together so that once we find the "key", it could have the potential to help the lot of our symptoms. I believe once my depression/anhedonia/depersonalization/fog shit goes away, I can then begin to enjoy doing things again, I also think that will bring back a lot of my libido/interest in things. And will make the fight a HELL of a lot easier to get better. I also believe that once that stuff is fixed, the body can then start to finally take a break and repair itself (joint pain/muscle weakness) etc.
14 minutes ago, Colinboko said:29 minutes ago, guitarman01 said:I think we could live with some of the physical side effects, its the mental ones we cannot tolerate. Thats why you should consider getting the MRI, especially if you never had one. I wouldnt recommend it for everyone, but for the people that are getting older that are still affected, we need to see if something is going on.
Literally what I thought the other day. If my mental sides were gone, I could most definitely "move on". The thing is I feel like everything is tied together so that once we find the "key", it could have the potential to help the lot of our symptoms. I believe once my depression/anhedonia/depersonalization/fog shit goes away, I can then begin to enjoy doing things again, I also think that will bring back a lot of my libido/interest in things. And will make the fight a HELL of a lot easier to get better. I also believe that once that stuff is fixed, the body can then start to finally take a break and repair itself (joint pain/muscle weakness) etc.
Yeah im with everyone on that - fix the mental and our quality of life would improve tenfold.
I went to have an MRI in 2003, ended up moving around too much and the lady controlling it said it wasn't reading correctly. Had to get out as claustrophobia was unbearable....anyway I know they can zonc you out somewhat as apparently many people can't stand the claustrophobia.
Anyone else got experience with MRI's?? Fuck - the amount of money and time spent getting out of this web is staggering, the lack of help from Roche - staggering when you think about it over 20 years!! Incredibly dark times we live in, Roche are certainly not my people. I often wonder if anyone has ever left them after reading what they've created with tane? The devastation they've unleashed....
To be honest guys, I know this shit all sucks. But we can't deny that we're getting close to figuring this shit out. If I had been a part of this thread in 2010, I don't know what I would have done. Big thanks to everyone that contributes. Keep testing and working stuff out every day!
Forget the disease headline. The antibiotic might be the generic type causative factor.
Tell me this doesn't sound extremely, I mean extremely familiar. This was after antibiotic treatment.
Postural orthostatic tachycardia syndrome following Lyme disease.
https://www.ncbi.nlm.nih.gov/pubmed/21305487
A subgroup of patients suffering from Lyme disease (LD) may initially respond to antibiotics only to later develop a syndrome of fatigue, joint pain and cognitive dysfunction referred to as 'post treatment LD syndrome'. We report on a series of patients who developed autonomic dysfunction in the form of postural orthostatic tachycardia syndrome (POTS).
METHODS:
All of the patients in this report had suffered from LD in the past and were successfully treated with antibiotics. All patients were apparently well, until years later when they presented with fatigue, cognitive dysfunction and orthostatic intolerance. These patients were diagnosed with POTS on the basis of clinical features and results of the tilt table (HUTT) testing.
RESULTS:
Five patients (all women), aged 22-44 years, were identified for inclusion in this study. These patients developed symptoms of fatigue, cognitive dysfunction, orthostatic palpitations and either near syncope or frank syncope. The debilitating nature of these symptoms had resulted in lost of the employment or inability to attend school. Three patients were also suffering from migraine, two from anxiety and depression and one from hypertension. All patients demonstrated a good response to the employed treatment. Four of the five were able to engage in their activities of daily living and either resumed employment or returned to school.
CONCLUSIONS:
In an appropriate clinical setting, evaluation for POTS in patients suffering from post LD syndrome may lead to early recognition and treatment, with subsequent improvement in symptoms of orthostatic intolerance.
51 minutes ago, guitarman01 said:Forget the disease headline. The antibiotic might be the generic type causative factor.
Tell me this doesn't sound extremely, I mean extremely familiar. This was after antibiotic treatment.Postural orthostatic tachycardia syndrome following Lyme disease.
https://www.ncbi.nlm.nih.gov/pubmed/21305487
A subgroup of patients suffering from Lyme disease (LD) may initially respond to antibiotics only to later develop a syndrome of fatigue, joint pain and cognitive dysfunction referred to as 'post treatment LD syndrome'. We report on a series of patients who developed autonomic dysfunction in the form of postural orthostatic tachycardia syndrome (POTS).
METHODS:
All of the patients in this report had suffered from LD in the past and were successfully treated with antibiotics. All patients were apparently well, until years later when they presented with fatigue, cognitive dysfunction and orthostatic intolerance. These patients were diagnosed with POTS on the basis of clinical features and results of the tilt table (HUTT) testing.
RESULTS:
Five patients (all women), aged 22-44 years, were identified for inclusion in this study. These patients developed symptoms of fatigue, cognitive dysfunction, orthostatic palpitations and either near syncope or frank syncope. The debilitating nature of these symptoms had resulted in lost of the employment or inability to attend school. Three patients were also suffering from migraine, two from anxiety and depression and one from hypertension. All patients demonstrated a good response to the employed treatment. Four of the five were able to engage in their activities of daily living and either resumed employment or returned to school.
CONCLUSIONS:
In an appropriate clinical setting, evaluation for POTS in patients suffering from post LD syndrome may lead to early recognition and treatment, with subsequent improvement in symptoms of orthostatic intolerance.
That's the exact post I was reading earlier today. Super creepy
21 minutes ago, Colinboko said:That's the exact post I was reading earlier today. Super creepy
I'm actually from the future. Thats why I wear the spacesuit.Watch they find out this isnt post Lyme, the antibiotics might have caused this. This was years down the line, look how much faster or more potent accutane might have worked.
32 minutes ago, Nemesisbrady said:Igg4 telling u guys get it looked at
were close I feel it
What did your doctor say about your elevated igg4 blood level?
ive had a igg blood test. It was in range, but I have not had the subclasses tested.
I also have allergies, so im not sure if this test would be very meaningful for me.
Elevations in serum IgG4 concentrations are not specific to IgG4-related disease; they are also found in disorders such as multicentric Castleman disease, allergic disorders, Churg-Strauss syndrome, sarcoidosis, and a large number of other conditions.
He told me I don't want to scare u
but u could have dry eyes and stuff from an igg4 disease
and that is complicated can involve multiple organs
and got me a new rheum and. More
he said theirs treatments tho
but still scary...stress don't helo
but it's stressful when my skin flushing and eye dryness and bags and rashy dry skin
mirros pics avoiding people
now diet is stressful
this board makes me feel like I'm not alone...if I get off the board here and there
id like to keep in touch with u guys still some how
really wish we all felt better
Yea it's scary could be anything
he did mention thyroid
and I was told thyroiditis years ago but levothyroxine made me lose 30 pounds I was 150 pounds 5 feet 10
then old it was cured lol
so maybe it's still my thyroid
but that churg syndrome can happen from singulair and he wants me on it for allergies
i can't take antishiamines dryness...but I have urticaria hives
its nightmare
i for OCD depression anxiety insomnia
no was for them because side effects
accutane. Is why I'm this way why add more meds u know?
hey I want to give you an update on my progress: I finished my water fast 4 weeks ago and I can tell you it really helped. Before the fast I had really bad apetite, stomach pain, nausea caused by gastritis from stress.It has fixed that 50%. Sexual condition improved too little bit.
Dr.Pezzi send me his 2 books which I am reading now(very interesting).
Its a little hard for me to understand everything because I cant speak english perfect. I am starting a 2 week juice fast now and after that I will try Pezzis theory with finasteride. If anyone here would like to translate some short parts of the book into a more "understandable english" I would be very thankful.
On 8/28/2017 at 8:19 AM, tanedout said:Notice anything from the K2 @guitarman01 ? Assume you supplement D3 alongside it? I'm planning to get back onto the K2. Apparently K1 can be sourced easily from leafy greens like kale, and K1 is converted into K2 in the gut, but I'm not sure if that is the case with our screwed up microbiome, so I'll get on with 100mcg of K2.Apparently the strain of beneficial e.coli (which my gastrointestinal tests show I have no growth of) actually makes vitamin K in the gut, so I'm definitely going to be deficient. Beneficial e.coli also makes some B vitamins in the gut, so probably why I do a bit better taking an active B-complex.
It seems to be really hard to actually re-establish beneficial strains in the gut once they've been wiped out, but I'm eating a paleo diet now with loads of fermented vegetables so I'm hoping I can have another go with taking a load of mutaflor probiotic.
Also worth pointing out @mariovitali identified vitamin K as one of the main common factors using his analysis software.
https://healdove.com/disease-illness/Escherichia-or-E-coli-Intestinal-Flora-and-Bacterial-Infection
Heres my thought process atm. This could of course change. Yes im still taking k2 in the mk7 form. This is the only supplement im taking. if looking into this, I recommend a non-fermented form or synthetic for the purest version of this supplement. These are more rare and harder to find because they are fairly new. Your not really looking at the brand, your looking at the supplier. not trying to pimp brands but globally the options seem to be pharmapure menaq7 by nattopharma.(i cant even find this in the us atm) and K2Vital by kappa bioscience. These are pure trans forms free of cis isomers, so its as pure as a mk7 supplement you can get. For example the life extension one that is popular is an older supplement and about 50 percent CIS, tested by two different labs. These are considered contaminants or dilutions. so the 200mcg mk7 in life extension is more like 50mcg. Also k2 mixed with anything like a mineral is less potent or viable.
Theres also MK4 vs MK7. Ive tried both im sticking with mk7 for now. You could make an argument for either one. What might have happened though if the case makes more sense to me for mk7 atm. What I meant earlier is i dont think human bacteria are capable of synthesising mk4. It first comes from a longer chain like mk7. long chain menaquinones are found in high amounts in the liver and the colon (even if they are not absorbed in the colon, which is debatable, they are still there, and might serve a purpose.
Im not taking vitamin D, k2 might be able to raise vitamin d levels on its own and it might have something to do with vitamin d receptors. significantly raising Vitamin d blood levels have been mentioned on some reviews.
To wrap up here's some of the science. This was only just published this year, so its all pretty new.
Big disclaimer. The science makes sense, so have alot of things though, ive found more thats done harm, then anything thats helped. Ive looked into this enough, Ill just continue to take this until I can figure it out alittle more.
https://www.intechopen.com/books/vitamin-k2-vital-for-health-and-wellbeing
This book serves as a comprehensive survey of the impact of vitamin K2 on cellular functions and organ systems, indicating that vitamin K2 plays an important role in the differentiation/preservation of various cell phenotypes and as a stimulator and/or mediator of interorgan cross talk. Vitamin K2 binds to the transcription factor SXR/PXR, thus acting like a hormone (very much in the same manner as vitamin A and vitamin D)
im going to paste a couple chapters here. its all open access.
Chapter 2 
Vitamin K, SXR, and GGCXby Kotaro Azuma and Satoshi Inoue Keywords: ³-glutamyl carboxylase (GGCX), steroid and xenobiotic receptor (SXR), pregnane X receptor (PXR), protein kinase A (PKA), osteocalcin, osteoporosis, osteoarthritis
Chapter 5 The Impact of Vitamin K2 on Energy Metabolismby Mona M¸ller, Serena Tonstad, Tone Bathen and Jan Oxholm Gordeladze
Chapter 7 Vitamin K2 and its Impact on Tooth Epigeneticsby Jan Oxholm Gordeladze, Maria A. Landin, Gaute Floer Johnsen, H¥vard Jostein Haugen and Harald Osmundsen
Chapter 11 Vitamin K2 Facilitating Inter-Organ Cross-Talkby Jan O. Gordeladze, H¥vard J. Haugen, Gaute Floer Johnsen and Mona M¸ller
This last one is pretty interesting.
Chapter 14 From Protein Folding to Blood Coagulation: Menaquinone as a Metabolic Link between Bacteria and Mammalsby Brian M. Meehan and Jonathan Beckwith
When you think about it bacteria was the first form of life. Id just be careful if there was any negative link with this last one. There is no known toxicity though for k2 mk4 or mk7 at this time.
Thanks for the info on Vit K guitarman.
Whats your take on the "Pots" scenario further up the page?
As much we say, oh we've all got different problems after tane, I do believe the source of the problem is something we all have in common, if it turns out to be altered gut bacteria than we need to work on fixing it.
At some point though, someone's angle needs to take hold so we can eliminate some or all of the other therories circulating on the forum, you can spend months/ years barking up the wrong tree, remember how much time we debated the copper theory
And further to this point, if my ongoing frontal head pressure/tiredness is due to altered gut bacteria, what would be the point of getting an MRI?? I wouldn't be addressing the source of the problem. This is just my example, anyone on the forum could insert their own problem with the point I'm making here!!
Source of our problems, gee I hope we find it soon....
Thing that's hard is
most of these issues can be aggravated if not caused. Y stress and mental health stuff
the dryness is because it shrunk the oil glands completely
or hormones
not sure what it does to the brain....
some days I feel like it's never ending and will never stop
otjers I feel close to finding out
my case
looks like sjorgens thyroid igg4 disease
and liver damage
hormone issues
possible Rosacea and mental issues
I know some of us scoffed at the guy who came on forum all guns blazing saying "it's candida"
Lately, I know this much, if I back off the sugar I tend to feel less bloating, I sleep a bit better and I generally feel less irritated, over the last week I've eaten too much sugar and the candida has come back strong. I don't think it's the source of our problems BUT I do think with our gut health being out of whack we are very suseptible to candida.
On a slightly different issue, I've been saying supplements don't work but if you are going to experiment with Vit K, I think taking Vit D too would be ideal. The other supplement that comes up so many times with gut health is Glutamine!!
And one other good thing for gut health I'm told but didn't work for me is "Mutaflor" you may have more luck with it!?
I only consume sugar from apple and berries
and maybe almond butter and gluten free pasta
other than that notning
and I feel worse than ever
before accutane
i ate McDonald's frozen pizza mac n cheese
drank liters of Pepsi Mountain Dew
smoked two packs of ciggs
drank beers
and felt amazing slept amazing
1 hour ago, Nemesisbrady said:I only consume sugar from apple and berries
and maybe almond butter and gluten free pasta
other than that notning
and I feel worse than everbefore accutane
i ate McDonald's frozen pizza mac n cheese
drank liters of Pepsi Mountain Dew
smoked two packs of ciggs
drank beersand felt amazing slept amazing
Yep same - after tane just a mess.
but you can either add fuel to the fire by maintaining a crap diet or you can be vigilant and do your best.... I've got a job and and I need to perform and would like to keep it, in my mind if eating more sensibly equates to less irritability than I'm all for it, especially as I'm in sales and need to talk to a lot of people!!
After 20 years I'm at that point, I just trade one thing for another - life is not the same after tane that's for sure....maybe soon though we'll put all of this behind us....