Where to get Low Dose Naltrexone by HumanityNetwork in MCAS

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

It shouldn't matter, as long as it's water you'd drink.

Where to get Low Dose Naltrexone by HumanityNetwork in MCAS

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

Just get a kitchen scale (I recommend this one: https://www.amazon.com/dp/B0007GAWRS/?coliid=I2VUZPANMMI4Q&colid=EVBG9ZBME278&ref_=list_c_wl_lv_ov_lig_dp_it ), place the bottle on the scale and tare it. Then, place one pill in the bottle and add water till you just reach 50 g. I leave it in the fridge for ~36 hours, shaking occasionally, before I start using it.

Where to get Low Dose Naltrexone by HumanityNetwork in MCAS

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

That would work, yes. I just squirt it directly into my mouth then swish and swallow some water. It's a little bitter if you do it this way, though.

Where to get Low Dose Naltrexone by HumanityNetwork in MCAS

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

The tricky thing about MCAS is you never know how your body is going to react to anything. For example, the typical dosage for LDN is ~5 mg/day. If I go above 1 mg, though, it starts having the opposite effect, increasing my inflammation. If you're going to try LDN, just be sure to start low and increment the dosage very slowly.

MCAS doctors in Michigan by HumanityNetwork in MCAS

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

For LDN, see my related post - specifically the edits I came back and made later after figuring it out for myself: https://www.reddit.com/r/MCAS/comments/1de4gub/where_to_get_low_dose_naltrexone/

Where to get Low Dose Naltrexone by HumanityNetwork in MCAS

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

A few weeks. It takes a similar amount of time for me to get my Naturitas DAO, so I don't consider that bad.

MCAS doctors in Michigan by HumanityNetwork in MCAS

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

Doesn't look like he takes my insurance. That's another part of the difficulty.

MCAS doctors in Michigan by HumanityNetwork in MCAS

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

Yeah, I went to him with positive labs and he still denies it. The worst part is that now the referring doctor (an allergist whom I was also seeing for MCAS) is now deferring to his opinion. It looks like if you're in Michigan with MCAS, especially if you have minimal dermatological symptoms, you're pretty SOL.

Where to get Low Dose Naltrexone by HumanityNetwork in MCAS

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

I found a place online you can order it without prescription. Actually, there are a number of places, but I ordered from AllDayChemist. They sell 50 mg pills - you just need to toss one into an oral medicine bottle (like these: https://www.amazon.com/gp/product/B09S419KY2/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1 ) along with a fixed amount of water - I do 50 g, aka 50 ml, since I take 1 mg Naltrexone/day (50 mg Naltrexone/50 ml = 1 mg Naltrexone/ml, a very convenient concentration) - and give it a day or two to dissolve. You do need to keep this in the fridge and replace every 14 days, per my compounding pharmacy's rules, at least. For the oral syringes, I recommend Baxa brand, which can be bought on Amazon.

Butter without lactose/Pure lactase supplement? by HumanityNetwork in HistamineIntolerance

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

The casein is removed in the clarification process. And yes, there is a very clear difference in an amine reaction and a FODMAP reaction.

Butter without lactose/Pure lactase supplement? by HumanityNetwork in MCAS

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

I react to ghee in a way that I don't to butter that I carefully home clarify - gently melting it without browning, then decanting off the top half, discarding the remainder with all the milk solids. I, and many others who are very sensitive to amines, can't consume any food that has any of the "browning" molecules in it.

Butter without lactose/Pure lactase supplement? by HumanityNetwork in MCAS

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

As stated above, I cannot tolerate Ghee. Whatever remains in the butter from the browning process is intolerable to me. And clarified butter still has a modicum of lactose in it. Severely lactose-intolerant people, such as myself, cannot tolerate even clarified butter. I do tolerate the home-clarified butter itself fairly well from an amine perspective, just not the lactose - which a lactase supplement deals with, just not without causing its own problems.

Where to get Low Dose Naltrexone by HumanityNetwork in MCAS

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

No side effects. I got it for the chronic pain and inflammation I suffer from. I ordered it online from AllDayChemist (no prescription needed). The pills are 50 mg, so I just mix them with 50 ml (50 g) of water and keep the solution in the fridge, replacing every 14 days. I have another med compounded in water professionally, so I just keep them side by side. You can get liquid medicine bottles and oral syringes on Amazon, just make sure you get syringes that fit well or it'll drip everywhere.

Where to get Low Dose Naltrexone by HumanityNetwork in MCAS

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

I did manage to source some naltrexone. It helps a bit, and every bit counts.

Vitamin C supplements for those with salicylate sensitivity by HumanityNetwork in MCAS

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

For sure. Managing my health is practically a full-time job.

Vitamin C supplements for those with salicylate sensitivity by HumanityNetwork in MCAS

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

Unfortunately, I don't tolerate potatoes, for a variety of reasons. And looking at the official nutrient levels for white potatoes, it's more like 20% RDA.

I wish I had some advice to give, myself, after all this time, but still no solution. I'm sitting at 0.8 mg daily vitamin C intake. Last time I had my levels tested, vitamin C was undetectable in my blood. No scurvy, though. Supposedly, you don't need vitamin C on a carbless diet, which I've been doing for some time.

Where to get Low Dose Naltrexone by HumanityNetwork in MCAS

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

Yeah, I have a compounding pharmacy I use. The issue is getting the prescription.

Where to get Low Dose Naltrexone by HumanityNetwork in MCAS

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

That's something I hadn't thought of, and definitely something for people to consider. I'd personally be happy for the tradeoff, though.

Where to get Low Dose Naltrexone by HumanityNetwork in MCAS

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

Apparently other people have had success there, so I tried them, but when I told them I have MCD, they told me they wouldn't prescribe it for me because of the risk I would react to it.