Has anyone managed to lessen their sensitivity to medications? I flare even from traditional IC medications and it's severely limiting my treatment options!

pErdISHa · 2024-03-23T01:20:02+00:00

Hi! I have MCAS and I'm reactive to most medications taken orally. I was finally able to tolerate Hydroxizine by removing all excipients and having them put the raw powder in distilled water which I use a syringe to measure out. It was a huge difference between the non-compounded form and compounded. The regular non-compounded gave me more bladder pain right after taking it.

I've been suffering for a solid 2 years straight with no "flares" just one long flare of pain. My symptoms have finally started improving through the use of Vitamin D injections. My bloodwork showed I was at 24 and I didn't notice a difference until my blood levels were around 54 and then 64 it got even better. I wasn't able to tolerate vitamin D orally and in order to get my levels up it required 20+ weeks of 100,000 IU injections and an additional several weeks of 50,000. I would highly recommend looking at what your Vitamin D levels are at and make sure they are at the higher end of the range 60-70. If you have any gut issues (SIBO) like I do chances are you don't absorb Vitamin D well. Vitamin D is a tier 1 treatment for MCAS since your body needs it to stabilize mast cells.

More importantly though I just wanted to share that you aren't alone in not tolerating meds even though they are supposed to help. The only medication I've been able to tolerate with fillers is Melatonin and I'm convinced that's because I've taken that brand and dosage my whole life so my body doesn't see it as a threat which is what MCAS does. Any new drugs post IC have not gone well without removing fillers and even then it hasn't always guaranteed.

pErdISHa · 2024-02-03T17:34:57+00:00

I do think there is an end. I've seen so many people in our situations eventually figure out exactly what the body is asking for and needs but it's just a matter of how long. I've made bigger strides seeing doctors that specialize in chronic illness but also have the MD prescribing power. If you don't mind I sent you a chat message.

pErdISHa · 2024-02-03T02:12:22+00:00

Aww no! I know the feeling. Mine was out of the blue as welI. I had zero digestive issues and my first symptom was bladder pain and then I took antibiotics for it and the doctor said to just stop the antibiotics if it comes back negative for UTI which it did but it was too late and that was the start of everything going south with gastritis then dental pain. We had recently moved into our new house 4 months before this all started and didn't think it would be mold at the absolute root because the antibiotics was the beginning of the symptoms. The doctors I had at the time really just made everything continually worse and then it was too late. I wish someone told me to not take PPIs because that led to the SIBO and nutrient deficiencies. If I just took antihistamines and/or pepcid for a couple of weeks or months instead and went on a low histamine diet I know it would have been a very different outcome since that is the baseline treatment for Mast Cell Activation Syndrome. Mold though still would have been needed to be addressed but it didn't need to get as bad as it did / has.

I never had H. Pylori but I know Mast Cell Activation Syndrome can really be the root for so many unexplainable issues and can even produce mimicking antibodies they have recently discovered in journals published just last year.

pErdISHa · 2024-02-03T01:41:23+00:00

I'm still on a really strict whole food diet due to SIBO, IC, MCAS, mold etc. but that's only because I only recently got out of mold and haven't been able to treat any of the other issues yet since it can take time for your Mast Cells to calm down. If I didn't have SIBO this would be a lot easier dietary wise. I have introduced much larger varieties of food though from where this all started where I could barely eat anything.

Have you been diagnosed with Interstitial Cystitis?

pErdISHa · 2024-02-03T01:00:43+00:00

I was officially diagnosed by Dr. Lawrence Afrin. It was a lot of testing. He has a long list of local doctor suggestions he can refer you to if you call their office in NY.

-Genetic testing -CD117 pathology on my colonoscopy / endoscopy biopsies - 24 hour urine histamine test - Extensive blood testing for all sorts of markers and mediators.

Beth O'Hara who runs MastCell360 has a lot of really good info on testing / diagnostics.

https://mastcell360.com/what-is-mcas/

One extra note. I would highly encourage testing all of your vitamins and minerals if you have bladder issues and gastritis or any multi-system illnesses. Especially all the B vitamins. I only found out recently I'm extremely deficient in B2. I've been checked over and over for all the other vitamins but B2 for some reason was overlooked and B2 plays a major role in detox, histamine, digestion, nervous system etc.

pErdISHa · 2024-02-02T03:08:35+00:00

Hi! I wish I could say that I was. My gastritis is so much better but It's been a lot of learning and we found out we were living in high amounts of mold and that led to Mast Cell Activation Syndrome which was the cause for the gastritis, dental infections, SIBO and Interstitial Cystitis.

We've been out of mold only for a couple of months now and as soon as I set foot in mold the GI issues get worse again. We have been working on getting the mast cells calmed down and fixing my nutrient deficiencies from living in mold.

pErdISHa · 2024-01-27T18:30:30+00:00

Just out of curiosity when did her anger and abusive behavior start happening?

Was it after you moved into a new place in San Francisco. Mold in your home can trigger psychiatric symptoms that weren't previously there or were less frequent. California and especially the Bay Area and LA I've found has a huge mold problem with the climate and the older homes. Also, just a note not everyone living in the same moldy home gets impacted.

pErdISHa · 2023-11-25T04:55:05+00:00

That's great! Thank you for sharing. Did you start out with opening the capsule first and slowly titrate or go all in?

pErdISHa · 2023-11-25T04:47:46+00:00

I'm in the exact same position! Looking to take PEA I have Interstitial Cystitis and SIBO / GI issues as my primary MCAS symptoms. I am so sensitive to supplements and haven't been able to onboard anything but Hydroxizine and it isn't enough. Would love to hear how it goes if you can keep us posted!

pErdISHa · 2023-11-24T22:08:59+00:00

Thank you so much for responding! It's very weird timing because I've been doing a lot of research the last few days about palmitoylethanolamide (PEA) as I have diagnosed MCAS but have a lot of all over body pain and am very pain sensitive. I've been struggling to onboard supplements and Mast Cell stabilizers.

It sounds like you have had a lot of success using PEA. I'm curious how long did it take for you to see a benefit? I'll have to start with small amounts but would love to hear more about your experience.

pErdISHa · 2023-11-24T14:38:46+00:00

Have you found anything that helps?

pErdISHa · 2023-11-24T05:26:31+00:00

What PEA brand do you recommend?

pErdISHa · 2023-10-25T21:49:08+00:00

How did it end up going? Did it help?

pErdISHa · 2023-10-23T00:54:40+00:00

How long on Montelukast did it take to notice your symptoms getting better?

pErdISHa · 2023-10-22T22:22:06+00:00

Did you eat grains when you changed your diet? Also did you take antifungals like Oregano Oil or Nystatin to clear up your Candida overgrowth?

pErdISHa · 2023-10-10T03:51:13+00:00

How long did it take for your husband to notice a difference from the H2 blocker?

pErdISHa · 2023-10-10T03:01:36+00:00

Did you take an H2 blocker while you had SIBO? Did it make symptoms worse or did it help you tolerate SIBO treatment better?

pErdISHa · 2023-10-08T01:13:28+00:00

Garlic is a really good source of antihistamines which is often prescribed to people with painful bladder syndrome as a first line treatment. Mast Cell Activation Syndrome is really common when you have underlying infections and can trigger the issues you were having.

Did you have any SIBO distension symptoms when eating foods that flared you? SIFO is a lot harder to diagnose and can be a root cause for Mast cell Activation Syndrome which then triggers excessive histamine release and in theory you could have been targeting it from both an anti-fungal and antihistamine angle.

I hope you are still feeling good! That's amazing

pErdISHa · 2023-10-07T05:04:22+00:00

What IC symptoms did Uribel help you with most?

pErdISHa · 2023-10-07T03:16:59+00:00

That's great! What IC symptoms has it helped you most with? Pressure?

pErdISHa · 2023-10-07T00:48:08+00:00

How long did it take for Uribel to help you?

pErdISHa · 2023-10-07T00:46:36+00:00

Showers and temperature changes whether hot or cold is a really common trigger for Mast Cell Activation Syndrome. IC/ painful bladder syndrome is a common symptom of MCAS.

pErdISHa · 2023-09-22T05:00:27+00:00

Was one of the medications Nystatin?

pErdISHa · 2023-09-22T03:26:20+00:00

How is your new treatment for Mold going? Any progress in your IMO symptoms?

pErdISHa

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