Very Severe Case - Please Help

[Stark1]

I have had MCAS since 2019, but was moderately well managed (was able to work full-time from home) until things went downhill very sharply this past January (I suspect a Covid infection kicked things off worse). I began reacting to all food, eventually culminating in two episodes of anaphylaxis. Thereafter, I could tolerate no foods at all and was hospitalized and put on a feeding tube.
I have been on the NJ tube since February and have tried every antihistamine and medication under the sun, but I react to the tiniest dose of everything. The only meds I tolerate are the ones I was on before this happened: 4 mg ketotifen 2x per day, a lose dose of clonazepam, and a thyroid medication.
I also have not been able to have a bowel movement without an enema since this all happened.

Can anyone provide any advice? I am bedridden and only getting worse over time. I have spent at least 25k this year seeing doctors trying to get better, but I have not made any improvements and am getting very desperate.

 

[LINE]

Have they done any stool studies? - (looking for pathogenic organism in the gut - the gut can harbor a multitude of different organisms such as bad bacteria, yeast/fungal/mold, parasitic infections and even viral infection).

The gut is a very good place to look for trouble - it plays a central role in many processes, for example, the immune system is very active there. I would suspect that the gut is troubled based on your food sensitivities. So, when you have infections, the immune system in the gut will activate.

That activation in the gut can occur from either 1/ localized infection (gut bug) 2/ can also be activated when there is a systemic infection. A systemic infection would be a virus that would attack the body and not necessarily the gut.

I would be curious to know if they ever tested your Vitamin D or Vitamin A levels. These 2 are critical for proper immune function and also serve to support gut immunity. This would be one of my primary check offs due to their critical support nature.

Selenium is another critical nutrient (mineral) that supports immune function, it is involved in a number of critical pathways. Without adequate levels, then the immune system will be deficient.

I have other things, but will stop here.

 

[dannybex]

You might consider glutamine. It helps not only with mast cell and histamine issues, but also helps with constipation, maintains immune function, and especially helps to stabilize/repair intestinal permeability, which is possibly/probably causing the other issues, or at least contributing to them.

 

[Stark1]

Have they done any stool studies? - (looking for pathogenic organism in the gut - the gut can harbor a multitude of different organisms such as bad bacteria, yeast/fungal/mold, parasitic infections and even viral infection).

The gut is a very good place to look for trouble - it plays a central role in many processes, for example, the immune system is very active there. I would suspect that the gut is troubled based on your food sensitivities. So, when you have infections, the immune system in the gut will activate.

That activation in the gut can occur from either 1/ localized infection (gut bug) 2/ can also be activated when there is a systemic infection. A systemic infection would be a virus that would attack the body and not necessarily the gut.

I would be curious to know if they ever tested your Vitamin D or Vitamin A levels. These 2 are critical for proper immune function and also serve to support gut immunity. This would be one of my primary check offs due to their critical support nature.

Selenium is another critical nutrient (mineral) that supports immune function, it is involved in a number of critical pathways. Without adequate levels, then the immune system will be deficient.

I have other things, but will stop here.

Thank you for your reply.
I did have a GI MAP done a few months ago. The results showed overgrowth of some opportunistic bacteria. Unfortunately this is difficult to address when I don't tolerate any supplements or meds.
Bacteria Result Reference
Pseudomonas spp. 4.87e8 High ↑ < 1.00e4
Pseudomonas aeruginosa 1.53e6 High ↑ < 5.00e2
Staphylococcus spp. 1.35e4 High ↑ < 1.00e4
Staphylococcus aureus 2.02e4 High ↑ < 5.00e2
Streptococcus spp. 1.23e4 High ↑ < 1.00e3


Vitamin A and Vitamin D are within normal range. Selenium has not been tested recently, as far as I know.

 

[Stark1]

You might consider glutamine. It helps not only with mast cell and histamine issues, but also helps with constipation, maintains immune function, and especially helps to stabilize/repair intestinal permeability, which is possibly/probably causing the other issues, or at least contributing to them.

I wish I could take that because I do think it would help since my zonulin levels are off the charts. It caused me terrible symptoms even at a tiny dose, unfortunately.

 

[LINE]

Good to know. Pseudomonas is a problematic bug as you likely know (I don't mean to frighten you, just giving some information to work from).

Did they do anything about gut permeability? I bring this up because, with heavy immune activation, toxic byproducts are produced from the immune system that attacks the gut lining. For reference, these are known as ROS and RNS and I am sure a whole host of other difficult molecules.

These chemicals (ROS etc) are strong oxidants, that means they destroy healthy tissue. The lining of the gut is very thin which means the ROS can damage the gut lining (poke holes). This causes more inflammation both systemically and locally which means you go back into a vicious circle.

There are a number of supports you can do to bolster the gut lining. Let me know if you want details.

 

[Stark1]

Good to know. Pseudomonas is a problematic bug as you likely know (I don't mean to frighten you, just giving some information to work from).

Did they do anything about gut permeability? I bring this up because, with heavy immune activation, toxic byproducts are produced from the immune system that attacks the gut lining. For reference, these are known as ROS and RNS and I am sure a whole host of other difficult molecules.

These chemicals (ROS etc) are strong oxidants, that means they destroy healthy tissue. The lining of the gut is very thin which means the ROS can damage the gut lining (poke holes). This causes more inflammation both systemically and locally which means you go back into a vicious circle.

There are a number of supports you can do to bolster the gut lining. Let me know if you want details.

I would love some details. I have seen every mast cell specialist in my state (some quite well-regarded) and they usually recommend some supplements or medications for me to take but then quickly get stumped when I don't tolerate any of them.

 

[LINE]

Could you list out some of the things that you have reacted to?

Do you think this is purely the gut responding?

Have the glutathione levels been checked?

Did they check cysteine levels or NAC? or the amino acid Methionine?

(Questions are to figure out if the liver is causing problems. This is quite common with high inflammation going on. The liver has to handle many substances including drugs (supplements), toxic waste products from the body, hormone degradation etc.) Glutathione plays a key role in regulating both immune and detoxification but is not the only detox pathway in the liver)).

 

[arctos]

https://pubmed.ncbi.nlm.nih.gov/23494818/
Anti-allergic effects of enzymatically modified isoquercitrin (α-oligoglucosyl quercetin 3-O-glucoside), quercetin 3-O-glucoside, α-oligoglucosyl rutin, and quercetin, when administered orally to mice

$21~22
https://www.amazon.com/Natural-Factors-Antioxidant-Cardiovascular-Vegetarian/dp/B00KNOW1AU
i try and comparate with the normal quercetin dehydrate no upset the stomach at all, even when the stomach is in flare up, but same with regular quercetin dehydrate dont improve food allergies at level of a cure o pogression to a cure, only helps a bit

 

[Stark1]

Could you list out some of the things that you have reacted to?

Do you think this is purely the gut responding?

Have the glutathione levels been checked?

Did they check cysteine levels or NAC? or the amino acid Methionine?

(Questions are to figure out if the liver is causing problems. This is quite common with high inflammation going on. The liver has to handle many substances including drugs (supplements), toxic waste products from the body, hormone degradation etc.) Glutathione plays a key role in regulating both immune and detoxification but is not the only detox pathway in the liver)).

I could not find any results of them testing cysteine, NAC, methionine, or glutathione.

I think it is probably more complicated than just the gut responding, since I have system-wide symptoms and also react to scents/odors, temperature, exertion, things absorbed through the skin (cosmetics, oils, etc.), and also IV medications.

Some things I've tried and reacted to (note: all were compounded, so no additional binders)

Cromolyn Sodium
Montelukast
Famotidine
Cimeditine
Loratadine
Bendadryl
Levocetirizine
Fexofenadine
Doxepin
Quercetin
Sodium Butyrate
Quercetin
Magnesium Oxide
Ascorbic Acid
Vitamin D/K drops (Seeking Health brand)

I'm probably forgetting some. Since getting home from the hospital, I have not been able to successfully add a single medication or supplement.

 

[LINE]

Those clearly point to the liver - liver congestion that is which is not a Western Medicine concept. TCM (Traditional Chinese Medicine) would consider that to be liver stagnation. In Western biochemistry terms, they would label that as Phase 1 or Phase 2 detoxification problems. It might be labeled as methylation issues as well in Western alt medicine.

If I were betting, I would place the odds on glutathione depletion. You can see the groupings of the things you are sensitive to are diverse, e.g. not a single grouping - gluten for example. Perfumes, scents, odors, cosmetics typically fall into the VOC category. VOC = volatile organic compounds, examples are spray paints, diesel fumes, scents etc. https://www.epa.gov/indoor-air-quality-iaq/technical-overview-volatile-organic-compounds

The liver contains a SuperFamily of enzymes called the P450. They call it a superfamily because there are many versions of the P450 in which each family deals with a specific family of toxins. VOC is one family and there is a specific version of P450 that helps detoxify that chemical family.

You seem to have a wide spectrum of difficulties. Glutathione plays an important role in both detoxification and immunity. Your body needs to manufacture glutathione and it does that through a series of chemical reactions that require specific nutrients, for example the amino acid Cysteine or Methionine. But for either to be converted to glutathione, it requires a number of steps, for example there needs to be adequate folate.

The primary issue with glutathione is that it is needed in big amounts during an immune crisis. You can read the PubMed articles on the need of glutathione during a Covid storm. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7402141/

Since glutathione is prioritized by the immune system first, levels will typically fall which leaves the liver deficient and when the liver becomes deficient in glutathione, toxins accumulate. As a side note, glutathione contains a chemical structure called thiols and these thiols work against toxic metals which cause trouble in the cells.

Toxic metals would include lead, arsenic, cadmium, mercury etc.

 

[LINE]

#2 But all toxins cause problems, and this seldom discussed in many health forums. Toxins impede the cell vitality.

Glutathione and Liver
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7997318/

I am not sure what kind of test can be run to determine glutathione levels but if it were me, I would investigate it. As I mentioned, glutathione is closely associated with some of the sulfur containing amino acids such as cysteine. I don't think that methionine and taurine are directly involved in glutathione production even though they are sulfur-containing amino acids but they are quite important for detoxification. I do know that methionine depletion will induce histamine release.

There are some specific ways to increase glutathione, I never had IV Glutathione, so I can't share the experience, but I did countless trials with raising levels at home. I can tell you with certainty that capsule supplement does not work, however Liposomal Glutathione worked great. It is advised to move slowly with dosages since there can be a strong release of stored toxins which can overwhelm the system.

P.S. I do know that certain bacteria can utilize cysteine for their growth. I cannot state that pseudomonas is one of those bacteria. I put this here in case you were to supplement cysteine and see some bad effects. It would be difficult to know if the bad effects are from toxin removal or from proliferation of bad bacteria.

 

[LINE]

Selenium and glutathione production go hand in hand. Selenium also is active in immune function; it can also detoxify heavy metals and other toxins.

 

[Stark1]

#2 But all toxins cause problems, and this seldom discussed in many health forums. Toxins impede the cell vitality.

Glutathione and Liver
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7997318/

I am not sure what kind of test can be run to determine glutathione levels but if it were me, I would investigate it. As I mentioned, glutathione is closely associated with some of the sulfur containing amino acids such as cysteine. I don't think that methionine and taurine are directly involved in glutathione production even though they are sulfur-containing amino acids but they are quite important for detoxification. I do know that methionine depletion will induce histamine release.

There are some specific ways to increase glutathione, I never had IV Glutathione, so I can't share the experience, but I did countless trials with raising levels at home. I can tell you with certainty that capsule supplement does not work, however Liposomal Glutathione worked great. It is advised to move slowly with dosages since there can be a strong release of stored toxins which can overwhelm the system.

P.S. I do know that certain bacteria can utilize cysteine for their growth. I cannot state that pseudomonas is one of those bacteria. I put this here in case you were to supplement cysteine and see some bad effects. It would be difficult to know if the bad effects are from toxin removal or from proliferation of bad bacteria.

Selenium and glutathione production go hand in hand. Selenium also is active in immune function; it can also detoxify heavy metals and other toxins.

Thanks so much for this information. Definitely informative and I will have to look into what testing is available and try to find a liposomal glutathione with very clean ingredients.

I also just had a mold inspector in today who confirmed some black mold in the bathroom of my residence. Now I'm wondering if that could play a role, but the mold stuff is such a rabbit hole.

 

[LINE]

You are welcome - I think testing is pretty straightforward. I cannot comment extensively on Lipo Glutathione except I tried ReadiSorb (1st round) and then some other brands.

I do see Lypo-Spheric brand on Amazon, that company produces liposomal Vitamin C which has a great reputation - (I did multiple liposomal C products).

Again, I would state the caution that using liposomal glutathione at recommended doses may be good at some point but for the initial phase, I would use a fraction of the dose. The answer is simple, in that glutathione (when depleted) is a very potent detoxifying agent and could likely push out the toxins at a rate that body cannot handle.

This simply is not a good idea. The body will reabsorb the toxins and send them to new storage sites and obviously put more strain on the body. We want to minimize that burden. Using some vacuums (things that can bind toxins) is a great idea, it minimizes the stress. There are a number of vacuums I can recommend.

 

[arctos]

forgot to mention that I also tried Quercefit (liposomal quercetin or Phytosome quercetin) is sighlty better than quercetin dehydrate(plain quercetin or regular quercetin) but not so much improvement maybe as a lasting effect, the better of three is definitely EMIQ (IsoQuercitrin).
I also found that arachidonic acid and vitamin A is It's something to try

I would also like to try the product Mega Gla -Life extension
I am currently trying vitamin A but I only go for a few days, a little better and it helps the circadian rhythm, it makes me more sleepy at night

 

[Stark1]

You are welcome - I think testing is pretty straightforward. I cannot comment extensively on Lipo Glutathione except I tried ReadiSorb (1st round) and then some other brands.

I do see Lypo-Spheric brand on Amazon, that company produces liposomal Vitamin C which has a great reputation - (I did multiple liposomal C products).

Again, I would state the caution that using liposomal glutathione at recommended doses may be good at some point but for the initial phase, I would use a fraction of the dose. The answer is simple, in that glutathione (when depleted) is a very potent detoxifying agent and could likely push out the toxins at a rate that body cannot handle.

This simply is not a good idea. The body will reabsorb the toxins and send them to new storage sites and obviously put more strain on the body. We want to minimize that burden. Using some vacuums (things that can bind toxins) is a great idea, it minimizes the stress. There are a number of vacuums I can recommend.

Excellent. I would be very interested to hear which toxin binders you would recommend as well.

 

[Stark1]

forgot to mention that I also tried Quercefit (liposomal quercetin or Phytosome quercetin) is sighlty better than quercetin dehydrate(plain quercetin or regular quercetin) but not so much improvement maybe as a lasting effect, the better of three is definitely EMIQ (IsoQuercitrin).
I also found that arachidonic acid and vitamin A is It's something to try

I would also like to try the product Mega Gla -Life extension
I am currently trying vitamin A but I only go for a few days, a little better and it helps the circadian rhythm, it makes me more sleepy at night

I had never heard of Vitamin A for this purpose. I will have to look into that more as well, thank you.

 

[LINE]

Best binders (and I sampled countless)

Chlorella but only 2 brands -Clean Chlorella from the Health Ranger or Earth Circle Organic. The reason I mention those is that they are tested for harmful pollutants. These were the lowest in terms of pollutants found.

Zeolite I personally like ResultsRna, a little more expensive but a 2oz bottle can last maybe 2 months. I have used various zeolite powders which would be good for scavenging in the intestinal tract. Heiltropfen is the preferred brand of the powder form.

Charcoal - I use in bulk. Charcoal is effective against certain classes of toxins but not all. I find it more effective to layer the binders.

Antioxidants also assist in removal. I can list some preferred ones if you wish.

 

[Stark1]

Do you think the binder should be started before increasing glutathione?
I would love to hear your preferred antioxidants as well.