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Granite

New revelation: HPPD cause also be part auto-immune

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I want to preface that my symptoms are/were severe.  Ranging from mild annoyances like visual snow, palinopsia, tinnitus, headaches, muscle twitching to severe problems like sicca dryness, mental disorientation, fatigue, chronic muscle tightness causing sharp pains, GI dysmotility and intestinal pseudo-obstruction.  I basically developed a brutal form of HPPD.

 

After some recent GI-related problems, I was tested thoroughly by a doctor looking for answers.  By stroke of luck, I tested positive for something that explains very well a large portion of my symptoms.  I have positive antibodies for Ganglionic ACHr (acetylcholine) alpha-3 receptor.  Here's a paper with more detail: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764484/

 

I'm not really sure how many others here would test positive for the same receptor.  It has been studied, and while very rare, does not accurately describe and represent HPPD-type symptoms of visual distortion (although I believe mood related problems are connected).  But, what I realized for the first time is that it's not just a problem of receptors not functioning properly, but also my immune system is actively involved in the process of disrupting my neural communication.

 

Antibodies connect to the receptor and therefore block my ACHr from working properly.  So, any discussion of my receptor malfunctioning is somewhat moot.  The receptor is targeted by immune system to block its function. Fuck you immune system.

 

Don't know what this means yet, but while I'm still working to make connections to all sides, it does explain why Prednisone (immunosuppresive therapy) has been effective for me in the past.

 

EDIT:  Don't know why I forgot, but the auto-antibody for acetylcholine actually DOES have implications on the visual system.  As shown in the paper, people with this antibody has impaired reflexive pupils causing photophobia.  Bingo.

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Autoimmune .... Aaaauuuugggghhh ... Ouch !!! ... sorry to hear that

 

Don't know if it will help, but thiamine deficiency is connected with autoimmune:

As you may have noticed, am on a thiamine-jag  :D - give this a look, perhaps it will help you http://hppdonline.com/index.php?/topic/5027-thiamine-cocarboxylase/

 

Here is a mystery article from 1953, see if you can find it and let us know - Cocarboxylase in the therapy of myasthenia gravis - http://www.ncbi.nlm.nih.gov/pubmed/13079420

 

 

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I didn't notice your Thiamine thread.  Glad you found something that's working great for you!  I will definitely look into it.  In the past, I had some very interesting reactions to B-vitamins; specifically B6 seemed beneficial (just for energy), and B5 actually caused my hives to break-out more in higher doses (must have been doing something with acetylcholine).  I do remember trying Thiamine (not sure the dosage or type), but didn't have anything memorable happen.  Maybe I will try it again.

 

I also found other supplements that were amazing for me (I mean complete reduction of almost all symptoms) within 10 minutes:  Bilberry, Dandelion Root, Wobenzym.  I knew they all had action on the nervous system, but it took me a long time to find a connection between all these supplements, and it turns out these are all connected as flavonoids.  And, flavonoids are major GABA(A) ligands.  https://www.researchgate.net/publication/234035096_Flavonoids_as_GABAA_receptor_ligands_The_whole_story.  Not all flavonoids ar beneficial for me though, I actually have a very negative reaction to Quercetin.  But, I've tried other drugs like Finasteride which also have action on GABA(A) and cured me temporarily.

 

EDTI: Oh, I don't want to forget alcohol which was a miracle for me in the beginning (GABA(A) receptor postive allosteric modulator).  Interesting though that eventually alcohol stopped being as effective, and I noticed alcohol creates thiamine deficiency.

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Both Quercetin and Rutin are anti-thiamine, so while they are good flavonoids and anti-inflammatories, they will aggravate thiamine deficiency

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Both Quercetin and Rutin are anti-thiamine, so while they are good flavonoids and anti-inflammatories, they will aggravate thiamine deficiency

 

Quercetin is awful for me.  Rutin is wonderful.  Well at first.  The thing about Wobenzym (Rutin) is that for the first 24 hours, I feel amazing.  Then, I have some kind of rebound effect.  My blood vessels dilate, my sicca dryness gets far worse, and then I have severe depression.  Quercetin is nothing like that.  It just worsens my mood right away and makes me feel awful.

 

Do you have anything on licorice root?  That was the only other supplement I tried that immediately made my visual palinopsia worse, bad anxiety, tremors, and panic.

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On 3/24/2016 at 2:41 AM, Granite said:

I want to preface that my symptoms are/were severe.  Ranging from mild annoyances like visual snow, palinopsia, tinnitus, headaches, muscle twitching to severe problems like sicca dryness, mental disorientation, fatigue, chronic muscle tightness causing sharp pains, GI dysmotility and intestinal pseudo-obstruction.  I basically developed a brutal form of HPPD.

 

After some recent GI-related problems, I was tested thoroughly by a doctor looking for answers.  By stroke of luck, I tested positive for something that explains very well a large portion of my symptoms.  I have positive antibodies for Ganglionic ACHr (acetylcholine) alpha-3 receptor.  Here's a paper with more detail: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3764484/

 

I'm not really sure how many others here would test positive for the same receptor.  It has been studied, and while very rare, does not accurately describe and represent HPPD-type symptoms of visual distortion (although I believe mood related problems are connected).  But, what I realized for the first time is that it's not just a problem of receptors not functioning properly, but also my immune system is actively involved in the process of disrupting my neural communication.

 

Antibodies connect to the receptor and therefore block my ACHr from working properly.  So, any discussion of my receptor malfunctioning is somewhat moot.  The receptor is targeted by immune system to block its function. Fuck you immune system.

 

Don't know what this means yet, but while I'm still working to make connections to all sides, it does explain why Prednisone (immunosuppresive therapy) has been effective for me in the past.

 

EDIT:  Don't know why I forgot, but the auto-antibody for acetylcholine actually DOES have implications on the visual system.  As shown in the paper, people with this antibody has impaired reflexive pupils causing photophobia.  Bingo.

Wow this is incredible. I’ve suffered from hppd for almost 4 years now and I’ve just discovered I have antibodies to my GABA-B receptors. This means I have autoimmune encephalitis and there is treatment for it. I had a suspicion if others with hppd also had a form of autoimmune encephalitis and this confirms at least some others do. Having anti achr antibodies means you have autoimmune encephalitis and it could be paraneoplastic. Please look on Autoimmuneencephalitis.net and look under the antibodies of autoimmune encephalitis section. It talks about all of them. To treat I’ve started doing IVIG therapy and will move onto a therapy called Rituximab which is an immunosuppressant. I’ve noticed some slight improvements from the IVIG but I have just started treating so nothing major yet. How did you hppd begin? 

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Wow! That’s really 8nteresting thanks for posting that so much! It’s very beneficial that we all share everything we know about ourselves and the condition for a chance at better understanding this.

 

wtf

ill add that I had asthma and eczema when I was young. So also autoimmune disorder.

Edited by dasitmane

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If we find out that hppd is a form of autoimmune encephalitis then that means there is treatment and remission can be achieved 

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interesting. I had brain fog before i touched drugs, maybe auto immune.  Ive booked a blood test for may 2nd but will only be for common types not brain types, so will probably have to get a brain ai test via a neurologist which on the nhs will probably happen when i can draw my pension.  Granite and hannah, what countries are you in?  How did you decide which tests to do, did a specialist refer you?

Edited by brendan

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interesting. I had brain fog before i touched drugs, maybe auto immune.  Ive booked a blood test for may 2nd but will only be for common types not brain types, so will probably have to get a brain ai test via a neurologist which on the nhs will probably happen when i can draw my pension.

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On 3/31/2018 at 8:16 PM, dasitmane said:

Wow! That’s really 8nteresting thanks for posting that so much! It’s very beneficial that we all share everything we know about ourselves and the condition for a chance at better understanding this.

 

wtf

ill add that I had asthma and eczema when I was young. So also autoimmune disorder.

I don't think I've ever really had any health problems like that.

I thought maybe I had PANDAS because I have pretty severe OCD but I confirmed that I never had strep as a kid.

Edited by TheMythos

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I was recently looking into autoimmune stuff as I seem to suffer from several issues relating to my system.... plus my t4 levels came back pretty low. Wonder what this will bring up.

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interesting. I had brain fog before i touched drugs, maybe auto immune.  Prompted by this thread, I went and had some blood tests for common and easy to test autoimmunes, which doesn't include cerebral ai.  They all came back negative which i expected.  However, my neutrophils were a bit low, which could indicate some sort of chronic infection or ai.  I have a neuro appointment in september so will see if they can test for any cerebral ai.  

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interesting thread...Please keep us informed.

I just wonder, what's the interaction then between hallucinogens and the auto-immune encephalitis ? 

how come one could trigger a reaction that was non existent before ? .

I'm not sur to understand the whole statement here.

Edited by olivier24445
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I am reading threads, and this one does have merit for discussion. I know of a few HPPD individuals also diagnosed with IgG and other immunoglobulin deficiencies. This is an interesting thought at best (at least at this stage), but while diving through articles related to this thread that ended up meeting up with research I intended on investigating. 

I don't want to bias the research (although, I think it would be difficult based on the protocol), but a measurement related to acetylcholine is a significant role in measured variables along with the system for Dopamine in an area of the brain alluded to in the discussion for using senemet for HPPD. 

Discovering Narcolepsy is autoimmune is still very new. 

 

 

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i would think it more likely that a preexisting autoimmune would be a predisposing factor rather than hppd causing an ai response.  However ai can occur after stress so maybe a trip could count as a trigger stress to an ai response and cause hppd or at least create some of its symptoms.

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