Kava allergy + Can someone send me a sample of kava for research puporses?

[nhoeg]

Hello all.

So, some of you maybe remember me posting about consistent reactions to kava which continued when I stopped drinking (flushing, irritated eyes, hives, etc.).

Right now I am visiting an allergy research clinic, and they are taking my 'condition' very seriously. They have never heard of kava before. So I went to the clinic with a bag of kava, and they made a so-called histamine release test on me together with kava (they took some kava and somehow mixed with my blood), and the test was positive - I had a allergic reaction to kava.
I have always been allergic to pepper plants, so it makes kinda sense that I am also allergic to kava (which is a pepper plant). This, however, is something completely different from what my dermatologist said about it just being rosacea. This is allergy, and when I look at my symptoms they also seem a bit different from rosacea so there is definitely 'something' allergy-like going on. So far so good.

I have no conclusion yet, because I am still being tested at the allergy clinic. They are taking my "condition" very seriously and they are also very interested in kava. They will make some more advanced tests with me and kava in the next month. The clinic is connected to a wide range of scientists and researches on allergy, so there is potential for something interesting in regards to research on kava allergy here. @Henry

When I have finised my tests at the lab and I have complete results and conclusions with data, I will make a longer post here. However, I don't have any kava anymore (since I dont drink it), and the clinic would like me to bring another sample. Buying a whole new bag of kava would be overkill for that purpose I think. So I am kindly asking, if any of you (from Europe) would like to send me a small bag of fresh kava root to my address? I will of course pay postal service and the cost of the kava. Let me hear what you guys think.

Anyways, I hope you guys are doing well.

 

[The Kap'n]

Hello all.

So, some of you maybe remember me posting about consistent reactions to kava which continued when I stopped drinking (flushing, irritated eyes, hives, etc.).

Right now I am visiting an allergy research clinic, and they are taking my 'condition' very seriously. They have never heard of kava before. So I went to the clinic with a bag of kava, and they made a so-called histamine release test on me together with kava (they took some kava and somehow mixed with my blood), and the test was positive - I had a allergic reaction to kava.
I have always been allergic to pepper plants, so it makes kinda sense that I am also allergic to kava (which is a pepper plant). This, however, is something completely different from what my dermatologist said about it just being rosacea. This is allergy, and when I look at my symptoms they also seem a bit different from rosacea so there is definitely 'something' allergy-like going on. So far so good.

I have no conclusion yet, because I am still being tested at the allergy clinic. They are taking my "condition" very seriously and they are also very interested in kava. They will make some more advanced tests with me and kava in the next month. The clinic is connected to a wide range of scientists and researches on allergy, so there is potential for something interesting in regards to research on kava allergy here. @Henry

When I have finised my tests at the lab and I have complete results and conclusions with data, I will make a longer post here. However, I don't have any kava anymore (since I dont drink it), and the clinic would like me to bring another sample. Buying a whole new bag of kava would be overkill for that purpose I think. So I am kindly asking, if any of you (from Europe) would like to send me a small bag of fresh kava root to my address? I will of course pay postal service and the cost of the kava. Let me hear what you guys think.

Anyways, I hope you guys are doing well.

@nhoeg sincerely, thank you for letting us know, and do keep us up to date. This is extremely interesting.

 

[Zaphod]

Hello all.

So, some of you maybe remember me posting about consistent reactions to kava which continued when I stopped drinking (flushing, irritated eyes, hives, etc.).

Right now I am visiting an allergy research clinic, and they are taking my 'condition' very seriously. They have never heard of kava before. So I went to the clinic with a bag of kava, and they made a so-called histamine release test on me together with kava (they took some kava and somehow mixed with my blood), and the test was positive - I had a allergic reaction to kava.
I have always been allergic to pepper plants, so it makes kinda sense that I am also allergic to kava (which is a pepper plant). This, however, is something completely different from what my dermatologist said about it just being rosacea. This is allergy, and when I look at my symptoms they also seem a bit different from rosacea so there is definitely 'something' allergy-like going on. So far so good.
.

I look forward to hearing the results of this. While I would not consider myself to be allergic to kava there is definitely times where I feel the symptoms are similar to a release of histamine. Itchy skin (different from the dermo), dry red scratchy eyes, runny nose. In my case these are all minor but noticeable. They also vary depending on the batch of kava - so you might want to try having them test different batches if you can get them and are willing to spend the money...I am in the states so sending you kava won't work well but I am willing to chip $ in for additional testing if needed. Maybe kavaforums should start a gofund me account for things like this to help fund our own testing.

 

[skippykava]

@nhoeg You may have hit the jackpot with me and I'll save you years or decades or searching! I think you may have Mast Cell Activation syndrome. It is a condition I believe I also have. You will not get diagnosed no matter how many allergy clinics you go to. You need to see a professor of immunology at a university or somebody that specializes in this because it is relatively newly discovered condition.

I remembered your post from many months back talking about having to stop drinking kava as I did years ago as I started to get bad side effects (being allergic to it). However, I had already been ill with a condition for many years which I believe is Mast Cell Activation syndrome and only in the last month figured this out. I was avoiding many foods high in histamine recently and researching that when I discovered this syndrome. You can find many videos about it on youtube and information on the Internet. My symptoms started getting very bad when I was eating canned oysters every day. Anything canned meat is very high in histamine and shell fish is extremely high as well, so those things must have been super super high in histamine looking back.

For me I already had vestibular, neurological and muscle pain problems. One reason I thought kava would be nice is because it could relax my muscles when I get a flair up. I had been suffering with this condition for over ten years with extreme health problems. I may have also had this condition my hole life as I had other symptoms which the cause was never found which were also symptoms of Mast Cell Activation Syndrome.

I came back here and I'm glad I remembered and found your post. I went to your latest post which is this one and I'm replying here. Your symptoms sounded similar to mine. It is interesting now that you have continued to develop your search and have settled on histamine. I also found one other post by somebody on here mentioning flushing with kava. A person responded to him saying it was likely histamine related. I told him about this mast cell activation syndrome as well, but not as much detail in the post.

You need to go to https://tmsforacure.org and email the closest support group and ask them who is the doctor for your area that can see you about this condition. In my area it is a professor of immunology at a state university. I am scheduled to see them soon.

As I said I've had this for many years. I've had the unusual flushing for many years and the myofascial pain syndrome all over for many years. The flushing is often on arms and torso for me, not face. It is a very unusual looking flushing. However, face is very common for the condition. I've also had an issue of feeling very cold all the time and fainted in recent years, all symptoms of Mast Cell Activation Syndrome along with the muscle pain and neurological symptoms. Chronic blepharitis is also a symptom that I'm reading on a blog of a person who has MCAS and I have that too. Chronic eye burning/dryness (blepharitis) and being sensitive to a little cold like indoor AC are perhaps some of the worst symptoms.

Good luck and you may be able to contact me in the future if I get an email notification, however I don't come to this forum very often because I don't drink Kava. There is no cure for mast cell activation syndrome as it may be genetic. It is possible that certain infectious diseases may cause one to be sensitive to mast cell activation, so that is something you could look into, but the specialist may not have interest in that and that may not be the cause or you may not be able to figure out what infection it is. Some resources out there talk about this. I think I may have seen one person who said they cured it by eliminating some kind of infection, but I'm not even sure.

For many years I was investgating infection with Borrelia, or Bartonella and similar infections. I've been atigen tested for Borrelia by the Ceres Nanoscience technology developed at George Mason University and I'm negative for Borrelia. I'm also PCR negative for Bartnella from Galaxy Diagnostics. Though, I did have an IgG ( I think) positive response to bartonella, but that isn't much to go on. If Ceres Nanoscience relaeses an antigen test for Bartonella I may take it in the future.

Either way, this is something I may have had my whole life. I had other symptoms when I was young like strange visual problems where things would go all weird grey and high contrast and also get these very strong heart palpitations in my chest that felt like electric shocks. All of that could have been mast cell activation syndrome I think now. I've tried going gluten free and the muscle problems did not resolve either, so it is not a celiac variant from what I can tell.

 

[violet]

@skippykava It looks like you've been through a lot trying to source the cause of your issues. I'm sorry to hear of your maladies and I deeply empathize with you. Sometimes when doctors aren't able to help us we have to keep trying to reverse engineer through our symptoms until we find resolution or more information that will guide us.

A few things for you:

Have you been checked for MTHFR defects? They are not uncommon and will definitely complicate issues, if not directly cause them. Unblocking methylation is vital in the presence of any chronic illness.

Have you ever treated for parasites? They cause major, major issues and are highly associated with mast cell dysfunctions. Testing is much worse for them than anything else (you could literally send an obvious specimen in for testing and it would still come back as negative!). People tend to the think they are not an issue here in the US, that probably makes them an even bigger issue. At least "back in the old days" there were a lot of folk remedies/foods taken on a regular basis to purge them. Any immune suppression (comes with bodily dysfunction) will allow them to proliferate. Treatment has to remain ongoing in chronically ill people, as like any pathogen they are never fully eradicated, the body's immune system just keeps them in check.

Have you considered CPN (Chlamydia pneumoniae). It is a stealth type infection much like lyme, bart, babs, etc that can cause a lot of symptoms and has a specific treatment regimen as well.

Secondary porphyria (or maybe even primary porphyria?)... This is much like MCAS in that there is often an underlying trigger. Porphyria does not always affect the skin, and probably goes hand-in-hand with MCAS. It takes specialized, specifically timed tests by someone who knows what they are doing to catch it with testing. LINK HERE discusses the link between CPN and Secondary Porphyria. When it gets down to discussing B12 deficiency, folate and homocysteine levels, that part of the discussion also directly applies to MTHFR defects. The blocks in the methyl cycle are often associated with elevated homocysteine and H&H (hemoglobin & hematocrit) and can lead to the same symptoms.

Are you familiar with CIRS? Chronic inflammatory response syndrome, treatment aims to address the inflammation process in a specific way so that the body is able to clear inflammatory cytokines, biotoxins, and correct the faulty processes which cause disease and completely impede healing. A really good functional medicine doctor who has expertise in treating CIRS patients might have a broader scope to be able to see what could be causing the mast issues. Finding curative care is difficult because the interplay of the human organism is so complex and many practitioners and specialists are too narrow in their views to see all the connections of what is causing what.

Mold exposure can be pretty major. If you genetically can't clear mold toxins (very common, about 25% of US population) any exposure will remain with you causing a lifetime of problems until proper intervention is taken to alleviate it. Mold toxicity affects vision and contrast in certain ways.

That bartonella IgG bothers me. Most of the time those infections never travel alone especially here in the east, but the Nanotrap and Galaxy's PCR are supposedly be the best we have right now. But really anything that causes a chronic stress response to the body will lower the immune system and allow stealth infections to get a hold, which will also further depress the immune system in an awful negative feedback loop. What about babesiosis (from mosquitoes) or erlichia? The MD of this BLOG is well known for his excellent smears for babs if you ever need to revisit testing for these types of infections.

Mycoplasma might be another consideration. Most anybody who's ever had a chest cold will have titers for it, but a high amount could implicate it as actively causing issues at the time.

 

[skippykava]

@skippykava It looks like you've been through a lot trying to source the cause of your issues. I'm sorry to hear of your maladies and I deeply empathize with you. Sometimes when doctors aren't able to help us we have to keep trying to reverse engineer through our symptoms until we find resolution or more information that will guide us.

A few things for you:

Have you been checked for MTHFR defects? They are not uncommon and will definitely complicate issues, if not directly cause them. Unblocking methylation is vital in the presence of any chronic illness.

I've been tested for MTHFR by the immunologist I saw the mast cell stuff. I'm actually thinking mast cells are not the primary problem, though the immune system is somewhat involved and I'm explain at the end of my reply and what I really think is going on. There are various levels of MTHFR mutations and it gets quite complicated, but I don't test positive for the primary one.

Have you ever treated for parasites? They cause major, major issues and are highly associated with mast cell dysfunctions. Testing is much worse for them than anything else (you could literally send an obvious specimen in for testing and it would still come back as negative!). People tend to the think they are not an issue here in the US, that probably makes them an even bigger issue. At least "back in the old days" there were a lot of folk remedies/foods taken on a regular basis to purge them. Any immune suppression (comes with bodily dysfunction) will allow them to proliferate. Treatment has to remain ongoing in chronically ill people, as like any pathogen they are never fully eradicated, the body's immune system just keeps them in check.

I've considered parasites and various vector borne infectious diseases for many years. There are none I'm currently considering. I've tested negative for Borrelia and Bartonella as far as I'm concerned.

Have you considered CPN (Chlamydia pneumoniae). It is a stealth type infection much like lyme, bart, babs, etc that can cause a lot of symptoms and has a specific treatment regimen as well.

Yes, and although I've never been tested this is something I followed for a bit along with the vector borne infections. I don't really suspect this at this time. Though, it is possible I had such an infection in the past which led to disease onset.

Secondary porphyria (or maybe even primary porphyria?)... This is much like MCAS in that there is often an underlying trigger. Porphyria does not always affect the skin, and probably goes hand-in-hand with MCAS. It takes specialized, specifically timed tests by someone who knows what they are doing to catch it with testing. LINK HERE discusses the link between CPN and Secondary Porphyria. When it gets down to discussing B12 deficiency, folate and homocysteine levels, that part of the discussion also directly applies to MTHFR defects. The blocks in the methyl cycle are often associated with elevated homocysteine and H&H (hemoglobin & hematocrit) and can lead to the same symptoms.

It is interesting you mention oprphyria because somebody commented on the book by Martin L. Paull on Amazon on the topic of the NO/ONOO cycle that this was an outdated theory and had been replaced by porphyria. I also researched porphyria and there are various forms, perhaps some that are subclinical or not documented or similar. I had really forgotten about this until you mentioned it and I don't think I'm going to look into this more.

Are you familiar with CIRS? Chronic inflammatory response syndrome, treatment aims to address the inflammation process in a specific way so that the body is able to clear inflammatory cytokines, biotoxins, and correct the faulty processes which cause disease and completely impede healing. A really good functional medicine doctor who has expertise in treating CIRS patients might have a broader scope to be able to see what could be causing the mast issues. Finding curative care is difficult because the interplay of the human organism is so complex and many practitioners and specialists are too narrow in their views to see all the connections of what is causing what.

No, I'm not familiar with this.

Mold exposure can be pretty major. If you genetically can't clear mold toxins (very common, about 25% of US population) any exposure will remain with you causing a lifetime of problems until proper intervention is taken to alleviate it. Mold toxicity affects vision and contrast in certain ways.

I've heard about mold exposure being a big factor for Mast Cell Activation Syndrome as one cause. I've had the condition and don't believe there was mold always present as I've lived in different locations. I checked my current living quite thoroughly and found nothing. The carpets will also be replaced soon.

That bartonella IgG bothers me. Most of the time those infections never travel alone especially here in the east, but the Nanotrap and Galaxy's PCR are supposedly be the best we have right now. But really anything that causes a chronic stress response to the body will lower the immune system and allow stealth infections to get a hold, which will also further depress the immune system in an awful negative feedback loop. What about babesiosis (from mosquitoes) or erlichia? The MD of this BLOG is well known for his excellent smears for babs if you ever need to revisit testing for these types of infections.

I also thought the bartonella IgG was somewhat suspicious, but it is not enough to go on for treatment. It can also mean past exposure which may or may not be causing disease. Or, it may simply be a cross reaction to antibodies, which is why diagnostic testing should be done with antigens, not antibodies. However, such testing is not commercially available though the technology does exist. I've referred Ceres Nanoscience which makes the angiten gest for Barrelia to Galaxy Diagnositics and Ceres Nanoscience is aware of Galaxy Diagnositics and maybe they will work together some day.

Mycoplasma might be another consideration. Most anybody who's ever had a chest cold will have titers for it, but a high amount could implicate it as actively causing issues at the time.

I believe CPN is a mycoplasma.

** What I really think is going on is a dysfunction of the hypothalamus. I believe the best theories propose this to be the cause involved in Fibromyalgia / Myalgic Encephalopathy / Chronic Fatigue Syndrome.

I believe correct treatment is Desmopressin which could even be curative with enough therapy. This is very similar or perhaps is a masked form of Central Diabetes Insipidus.

I will mention that there is a very unusual symptom of thirst which happens as a result of pressing on the muscle pain. Also, the lacrimal glands in my eyes are not secreting enough tears so they are dry and burning. Also, my skin is much more sensitive to being dry. Also, my autonomic nervous system is not functioning quite right, including feeling very cold and fainting. Also, the immune system seems to be messed up at least in the past and being linked to neurologic dysesthesia brought on by upper respiratory infections causing year long neurologic pain of burning and stinging.

The hypothalamus falls under endochrinology. It is the bridge to the nervous and immune system.

See these links on the connection of the hypothalamous and desmopressin for ME/FM/CFS:

(Scroll down to the entry "An (Old) New Drug for ME/CFS and POTS?-Bateman-Horne Center")
https://www.healthrising.org/blog/2...me-mecfs-iacfsme-conference-overviews-part-v/

"I was just informed that desmopressin is the precursor for CRH and ACTH in the HPA axis. It’s perhaps now surprise then the Irish study concluded that desmopressin was capable of “normalizing the pituitary-adrenal response to corticotropin releasing hormone” in ME/CFS."

"One of the earliest chronic fatigue syndrome studies – way back in 1991– suggested that problems with a CRH deficiency or “some other central stimulus” was present in ME/CFS. A 2001 study also found evidence ofreduced CRH secretion."

https://www.ncbi.nlm.nih.gov/pubmed/27401397

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3022475/

https://books.google.com/books?id=k...epage&q=fibromyalgia and desmopressin&f=false
"Paul Cheney has found that many of his CFS/ME patients have diabetes insipidus and he treats them with desmopressin."

@violet What exactly is your connection to all of this? You seem to have come across much of what I have already looked into. Do you have ME/FMS/CFS?