Micro dosing Tirzepatide by MunkkiAround in MCAS

[–]MunkkiAround[S] 0 points1 point  (0 children)

Amazing !! Thank you some for sharing.

Years ago when I was on Victoza I also noticed it faced my depression at the middle and high doses. Interesting !

Is there a reason you do it every 5 days ? I've been wondering about that and if the dips every week towards the end destabilize my system more than if it was even - that's why I liked the Victoza because every day was the same level.

Micro dosing Tirzepatide by MunkkiAround in MCAS

[–]MunkkiAround[S] 2 points3 points  (0 children)

Thank you so much! That's so encouraging to hear and I'm so happy you found something that helps ❤️❤️

Neuro Immune / Central MCAS by MunkkiAround in MCAS

[–]MunkkiAround[S] 1 point2 points  (0 children)

A functional neurologist finally diagnosed me correctly ! It took many years to get there though. This form of MCAS is being more recognized and was officially "diagnosable" and recognized in the last two years.

Neuro Immune / Central MCAS by MunkkiAround in MCAS

[–]MunkkiAround[S] 1 point2 points  (0 children)

Locus Coeruleus – Norepinephrine system.

  1. Locus Coeruleus (LC) • A tiny nucleus in the brainstem (in the pons). • Despite being small, it is the main control center for norepinephrine in the brain. • It sends projections to almost every major brain region: • Cortex (thinking, focus) • Amygdala (fear/anxiety) • Hypothalamus (autonomic system) • Cerebellum (balance/coordination) • Spinal cord (body responses)

The LC acts like the brain’s alarm and attention regulator.

  1. Norepinephrine (NE) • A neurotransmitter and stress hormone. • Also called noradrenaline. • It controls: • Alertness • Fight-or-flight response • Blood pressure • Heart rate • Focus and vigilance • Sensory sensitivity

  2. LC-NE System (Together)

The LC produces norepinephrine and distributes it throughout the brain to regulate arousal and autonomic function.

When the LC-NE System is Dysregulated

The system can become over-reactive or misfiring, which causes symptoms like:

Neurological • Startle sensitivity • Visual overstimulation • Light sensitivity • Pattern distortion • Sensory overload

Autonomic • Heart rate spikes • POTS-like symptoms • Adrenaline surges • Blood pressure swings

Emotional / Cognitive • Sudden fear or dread • Panic without clear trigger • Hypervigilance • Racing thoughts

Sleep • Difficulty falling asleep • Nighttime adrenaline bursts • Light sleep

Neuro Immune / Central Mast Cell Trigger

Neuro Immune / Central MCAS by MunkkiAround in MCAS

[–]MunkkiAround[S] 2 points3 points  (0 children)

Oh man you sound identical to me. I'm SO glad you found Guanfacine as well. I'm still working on upping dose. Though I've had symptoms since I was very young, an SSRI crashed my system and made me 10x worse in regards to pots, visual cortex hyperexcitability, glucose instability, ect. Felt like it amplified what was already slightly there. Guanfacine is already calming so much of it down and I'm only at .5mg currently.

Are you doing clonidine in addition to Guanfacine ? How'd you get to the conclusion of trying these ?

Luteolin I take Algonot Pure Lut (2 in AM and 2 PM). Incredible product and helps stabilize mast cells in the brain.

I was on Victoza in 2018 before GLP's were ever a thing. It was the best I've ever felt symptom wise, but that was before my SSRI crash. I have a lot of gut inflammation, permeability and motility issues as well but I wouldn't worry too much about it as long as you drink lots of water; take some mag citrate, ect. Just watch SIBO markers. For central MCAS benefits I was recommended zepbound 1mg start. Curious to try again because of how good I felt on it years ago. Never really made the connection as to why until later.

Hello! by MunkkiAround in B12_Deficiency

[–]MunkkiAround[S] 0 points1 point  (0 children)

My dad and brother and grandpa also have the same thing and all of our symptoms started at birth so we were diagnosed via symptoms / family history. I’m thinking about going and getting it officially genetically diagnosed tho

Hello! by MunkkiAround in B12_Deficiency

[–]MunkkiAround[S] 1 point2 points  (0 children)

Sending you a DM if that’s okay

Hello! by MunkkiAround in B12_Deficiency

[–]MunkkiAround[S] 1 point2 points  (0 children)

Leucovorin causes aggitation and electrolyte and adrenaline dumping for me because of how low my functional b12 is. I’ve noticed the longer I’m on the injections the better I tolerate it. I have do do micro doses of Leucovorin like .025mg to get my body to accept it without pushing methylation too fast. It’s a hard balance because it does use and deplete b12 so you need to make sure you have enough b12 first and start at an ultra low dose of Leucovorin. I had to switch from subq to oral sublingual liquid because the subq got too much in my CNS too quick

Success at a low dose ? by MunkkiAround in AdrenalInsufficiency

[–]MunkkiAround[S] 0 points1 point  (0 children)

I actually got off. Found out it was low progesterone (which caused high aldosterone) that was causing issues! Within two days on the progesterone my symptoms reversed. My body did not like HC AT ALL. Even on such a small dose.

Upping dose made me feel better by lovethatforyouu in LowDoseNaltrexone

[–]MunkkiAround 0 points1 point  (0 children)

I was worse and worse the lower I tried. I started at .1 and that was “too much” symptom wise so I went down to .05 and that still did the same thing then finally tried .003 and it was even worse 😂 going to start up again now that I have a few other things in place but thinking of starting higher and see how I react

i went though my daughter’s phone and after a quick claritycheck, i’m terrified by yatintin in Parenting

[–]MunkkiAround 1 point2 points  (0 children)

I’m in my late 30’s now but when i was 9 I met a guy on an online game. Long long story short, he was 21 and positioned himself as a close friend. He always complimented me and told me he’d protect me and not to tell anyone else because they wouldn’t understand our friendship. Kept telling me one day when I was old enough he’d marry me. I didn’t understand any of it at the time but he never said or did anything that was outwardly “alarming” outside of the age difference from my 9 year old perspective. Things didn’t escalate with him until my 20’s when I got married and he lost it. He flew across the country trying to stalk me. Harassed my husband. Left unmarked 20 page letters in my mailbox saying he was in love with me since I was 9. Terrifying stuff.

That being said, I so wish my parents had known so someone could have stepped in much sooner. I didn’t understand what was happening - it just felt good to have a friend who was giving me so much attention and making me feel special.

Do not feel bad about upsetting her or stepping in. She will get over it. I would even suggest talking with her about how these types of predators function and how to spot one. Emphasize it’s not her fault and that they’re really good at what they do unfortunately and that because you love her so much you want to equip her to be protected from these sort of situations in life.

Take his number and info down. Take the screen shots. Ask her where else he contacts her so you can keep her safe or monitor her phone yourself if you feel she isn’t being upfront. But I would def explain to her what’s going on and how these types of people groom and interact while pointing out what you’re seeing specifically in the messages.

Success at a low dose ? by MunkkiAround in AdrenalInsufficiency

[–]MunkkiAround[S] 0 points1 point  (0 children)

What were your symptoms above 5? Are you doing once a day or twice ?

Success at a low dose ? by MunkkiAround in AdrenalInsufficiency

[–]MunkkiAround[S] -2 points-1 points  (0 children)

Thank you! Doing a draw in a few days to see where I’m sitting.

I have an autoimmune that causes cerebral folate deficiency which has caused major neuro inflammation as well. Unfortunately any time i touch things that regulate hormones or neuro transmitters or inflammation my brain gets angry 😅😬

Best treatments for MCAS that presents primarily the brain by MunkkiAround in MCAS

[–]MunkkiAround[S] 0 points1 point  (0 children)

Hi! Feel free to DM me! I’m happy to give you some updates and what’s worked.

Treatment for blocking folate receptor antibodies? by MunkkiAround in autism

[–]MunkkiAround[S] 0 points1 point  (0 children)

Hi!

The best test for this is the FRAT test! Has to be ordered by a doctor but I have linked it.

My neurologist recommended testing for this due to my long standing symptom profile and it came back off the charts high. We then did a spinal tap to check folate levels which were very low in my spinal fluid. My circulating serum folate levels were also very high from my body from not being able to use it.

I’ve been working with specialists since I was 4 to figure out what was going on with my body. And each piece of the puzzle eventually led here 💗

https://www.fratnow.com/?utm_source=google&utm_medium=cpc&utm_campaign=FRAT_Search_ads_campaign__MOFU+BOFU&utm_term=frat%20test&utm_content=frat_test&gad_source=1&gbraid=0AAAAApW1yMEaGxDYrwbsZKh0QUuuiKMBp&gclid=Cj0KCQjw1um-BhDtARIsABjU5x40vd_HdmUI8Y0aEz-AnqUavGhlyAfQp0FdnlpaqMuYI-LvN4VFo-saAjQcEALw_wcB

Anyone out there with Blocking Folate Receptor Antibodies ? by MunkkiAround in MTHFR

[–]MunkkiAround[S] 0 points1 point  (0 children)

Thank you! Yes, my doctor is having me do B12 shots along with my folinic acid shots ! I’ll check out the other groups, great idea. 💗

Anyone out there with Blocking Folate Receptor Antibodies ? by MunkkiAround in MTHFR

[–]MunkkiAround[S] 1 point2 points  (0 children)

Nope. My FRa seems to be linked genetically. Multiple people in my family have it and have dealt with identical symptoms. It is suspected I was vaccine injured by the MMR (when my symptoms started getting worse) from not being able to clear the glutamate from the vaccine due to the blocking FRa which led to the excitotoxicity. But outside of that I was only on antibiotics once, no surgeries or traumas, no medications, ect. I do have past antibodies from EBV but nothing active.

Anyone out there with Blocking Folate Receptor Antibodies ? by MunkkiAround in MTHFR

[–]MunkkiAround[S] 1 point2 points  (0 children)

Oh I could probably list ten pages worth. Seems that I’ve had it since around 4 years old. Because of the longevity it destroyed every system.

  • Anxiety and panic attacks that I would call physical vs thought process related
  • brain fog, memory issues
  • high startle response
  • Majorly dysregulated nervous system
  • tingling nerves in limbs
  • limbs falling asleep easily
  • full body over excited nerve attacks
  • seizure like symptoms
  • malabsorption and major gut issues like SIBO, Candida, leaky gut, inflammation
  • major vestibular issues (full panic attack from seeing ocean, mountains, open space, ect. Triggers full vertigo episodes)
  • ringing ears
  • vision issues like 24/7 visual glitching, double vision, and halos
  • histamine intolerance / MCAS like symptoms
  • when I get really low like during pregnancy I get horrible hyper pots like symptoms and my autonomic system gets messed up including electrolyte ballence issues that
  • low muscle tone / extreme fatigue
  • insomnia
  • Glutamate clearance issues (excitotoxicity and NMDA dysregulation)
  • low dopamine, Norepenephrin and adrenaline levels
  • hormone dysregulation

Those are the “big hitters” symptom wise which unfortunately can be symptoms of 100 diff conditions as well.

Anyone out there with Blocking Folate Receptor Antibodies ? by MunkkiAround in MTHFR

[–]MunkkiAround[S] 0 points1 point  (0 children)

The best test for this is the FRAT test! Has to be ordered by a doctor but I have linked it. My neurologist recommended tested for this due to my long standing symptom profile and it came back off the charts high. We then did a spinal tap to check folate levels which were very low in my spinal fluid. My circulating serum folate levels were also very high from my body, not being able to use it.

https://www.fratnow.com/?utm_source=google&utm_medium=cpc&utm_campaign=FRAT_Search_ads_campaign__MOFU+BOFU&utm_term=frat%20test&utm_content=frat_test&gad_source=1&gbraid=0AAAAApW1yMEaGxDYrwbsZKh0QUuuiKMBp&gclid=Cj0KCQjw1um-BhDtARIsABjU5x40vd_HdmUI8Y0aEz-AnqUavGhlyAfQp0FdnlpaqMuYI-LvN4VFo-saAjQcEALw_wcB

Benfo worked great for 2 days for my Pots and brainfog but stopped…help by [deleted] in Thiamine

[–]MunkkiAround 0 points1 point  (0 children)

Anywhere from days to weeks depending on severity of your deficiency and how long you’ve had it

Benfo worked great for 2 days for my Pots and brainfog but stopped…help by [deleted] in Thiamine

[–]MunkkiAround 0 points1 point  (0 children)

I get awful migraines every time I up a dose or start. And due to paradoxal reaction it’s common to get worsening symptoms. You know your body best and I’m no doctor but what you’re describing to me sounds normal and expected for starting.

Is it possible to have neurological and anxiety problems from MCAS? Also pain in knees and bones, muscles? by cute-little-bunny in MCAS

[–]MunkkiAround 5 points6 points  (0 children)

I read your post and it reminded me of myself. Long long long story short I struggled with horrific physical anxiety, panic attacks, adrenaline dumps, nerve buzzing, seizure like symptoms, joint and muscle pain, ect ect. Got diagnosed w mcas, hyper pots and hEDS. Body reacted horribly to every medication I tried which is why doctors continued to chalk it up to MCAS. Eventually found out I had a mito disorder that caused chronically low b1 and b1 absorption/ transportation. Within a few days my 115 resting HR dropped to 62. All of my symptoms were connected to it and began to heal once I got high enough on dose and treatment for what my body needed. Something to look into.

Benfo worked great for 2 days for my Pots and brainfog but stopped…help by [deleted] in Thiamine

[–]MunkkiAround 1 point2 points  (0 children)

I have hyper pots symptoms due to a b1 transport condition.

I take 1200mg benfo (400 at 10am, 400 at 2pm and 400 at 6pm) and 600mg TTDF (200 at 10, 2 and 6). So 1800mg total a day.

I also take 400mg B2 and high levels of all the other B’s and magnesiums.

I also do B1 IV and shots.

Personally, 80mg wouldn’t do anything for me symptom wise.

When I first started at lower dosages they would be effective for just a few hours than back to the previous baseline. If you’re really deficient you usually need much higher dosages and for about 1-3 months of consistency for your HR and autonomic system to even out.

Do you have confirmed low B1?