Topic: Could you possibly have MAST CELL ACTIVATION DISORDER?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Great Thread. Thanks to all who have supplied me with lots of material to study. Certainly an important consideration. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by Lymetoo: TXLM... I'm afraid of that one too! (sorry!) .. I've spent so much money on supplements I can't take. I've not been able to take Vit C for more than 25 yrs now. I get acid reflux from it .. or bladder pain .. take your pick.
TooToo, Have you ever tried UriStat or UriSed for bladder irritation? One of them is Rx and the other OTC, but I can't remember which is which. They are a bit messy 'cause they turn your urine bright orange which stains your undies pretty badly. But hey, that's what Poise Pads are for. Ain't old age fun?
It does work like a charm though and is well worth the inconvenience of doing extra laundry.
Also, Cranactin with D-Mannose helps a lot of women with urinary urgency, especially so they don't have to wake up to pee in the middle of the night. Probably helps men, too, but I don't have any data points on men.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
LymeToo, Itching and eczema are often caused by a lack of the right fatty acids in the diet. Have you considered Udo's Blend or something similar?
What about a wee bit of a really good quality fish oil, one that's not rancid? Brands from the North Sea are usually highly rated for quality. They are also more expensive, of course, but you don't need a very high dosage. Just a wee bit is sufficient.
You'll know if it's rancid if you burp afterwards and get a rancid odor/taste coming back up. Or else just bite into the capsule. It shouldn't taste too fishy or nasty.
Coconut fat can be applied to the skin and absorbed that way. It's a saturated fat, of course.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
I read an interesting blog somewhere about making Kefiran at home, but I have no idea where I found that article. It might have been written by a tourist who was trekking through the Outback of Australia or New Zealand. I wish I could find it again because Kefiran sounds promising.
Heck, I still haven't even learned to make homemade sourkraut or Kimchi yet 'cause I'm too lazy. So why am I thinking that I would succeed in culturing Kefiran? It must be the challenge of discovering new ideas, I suppose.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
LymeToo, You mentioned having pretty bad GERD, so I'm curious if you are taking any kind of prophylactic anti-acid on a regular basis? The reason I'm asking is that these anti-acids can contribute to SIBO (small intestinal bacterial overgrowth) -- especially the stronger version of anti-acids known as PPIs (proton pump inhibitors).
SIBO patients have a VERY hard time getting the GI flora back to a healthy state. Unless the are able ot get off of their anti-acids, they often fail in re-establishing healthy GI flora.
Don't misunderstand me. I'm NOT suggesting that you do anything which you know would be harmful for you, and I trust that you are under better medical care now than before. I'm only mentioning this idea because it just one more thing for you to consider on your road back to better health.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Such great information on this thread. Has anyone tried LymeMD's protocol for MCAD?
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
TX, many people make their own kefir at home. I did it while I was in lyme treatment. The homemade kefir is much better than what you buy in the stores.
There are many websites for folks who want to make their own kefir. Folks will give or mail you the kefir grains you need. You put them in milk and let it sit on the counter and it turns into kefir.
There are a few rules to follow so you don't kill or contaminate your grains.
People from countries that drink kefir make it at home, so I got my grains from a Russian coworker.
Kefir is a very healthy food. It tastes like liquid yogurt. Burrascano says to drink some daily. So did the lyme doc who cured me. That is why I started making my own. I'm glad I did.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
- I do my best to stay away from taking more meds. I don't take anti-histamines unless I get really bad. Zantac makes my stomach hurt. I haven't tried Pepcid lately, but someone told me it's not gluten free. When I can't stand how I feel, I take Claritin. Zyrtec puts me 6 ft under.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
I need to add one other important caution and that is to avoid the temptation to rely too heavily on anti-histamines, especially the popular long-acting ones.
All they really do is prevent symptoms by blocking the histamine receptor sites, leaving all of the excess histamine floating around and accumulating, thereby increasing the underlying problem.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Kefiran is the clear or pale yellow polysaccharide gel exuded by dairy kefir or water kefir grains.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It would be great to be able to use fermented food. I used to .... but that was contributing to my high histamine levels. I have even had to be slow about which probiotics I add. I've finally upgraded from infant probiotics to adult probiotics.
Everything I was eating that was "healthy" was a problem for my histamine levels - fermented foods, dark chocolate, avocados, fish, cooking a healthy dinner and eating leftovers for lunch, etc.
But if you're going to make kefir, homemade is awesome! I got my grains at kefirlady.com .... I don't have them anymore ....
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by Lymetoo: What's the difference between Kefir and Kefiran? (sorry, I'm off to bed and not taking the time right now)
PPI's? Yep, been trying to get off of them for many years.
LymeToo, You'll definitely want to look at the links I posted earlier about Kefiran (vs. ordinary Kefir) when you aren't too tired. Those links explain it better than I can, and I don't want to misquote anything.
Regarding the problem with PPIs, you might want to visit the SIBOnation Yahoo group. I've known the moderator there for decades. She's a sheer genius and always very helpful -- really knows her stuff.
She's a PhD pharmacist (I think), but never mentions her PhD title at all, so very few folks know about her academic qualifications -- super smart when it comes to explaining medical concepts in simple layman's language. Also very pro-natural remedies vs. Rx meds. She's a former SIBO patient herself who cured herself naturally.
Another good idea for you would be LDA desensitization therapy for foods. (I don't remember if I've already suggested LDA to you yet or not.) There's a doctor referral list on Dr. Shrader's LDA website. (Click on Physicians tab in the menu at top of page.) http://www.drshrader.com/lda_therapy.htm
Even the MCAD expert Dr. Afrin recommends desensitization immunotherapy for MCAD, but he doesn't emphasize it nearly as much as I think he should, but then allergy is not his specialty anyhow.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Ketotifen is an advanced, 2nd generation H1 blocker and mast cell stabilizer Rx medication which looks very promising for severe cases of IBS and other types of food intolerances. Google it, but ignore the suggestion that it's primarily just for asthmatic kids because it is proving useful in many difficult forms of allergic and hypersensitivity reactions.
Because not many doctors are familiar with it yet, you might find this PubMed abstract about it helpful in case you decide that you might like to ask your doctor to let you try it: https://www.ncbi.nlm.nih.gov/pubmed/20650926
Take note that this article has 44 PubMed citations which are more current, if you want to investigate it further.
You might already be familiar with ketotifen in the form of ophthalmic eye drops for red, itchy eyes -- sold OTC as Zaditor, in a bright orange box. Not cheap, but a lot more effective than any other eye drops sold for badly inflamed eyes that are making life miserable for you during spring pollen season.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by TX Lyme Mom: [QB}[QUOTE] Even the MCAD expert Dr. Afrin recommends desensitization immunotherapy for MCAD, but he doesn't emphasize it nearly as much as I think he should, but then allergy is not his specialty anyhow. [/QB]
You might be smart to avoid food allergy desensitization after all, LymeToo. Take a look at what this blogger who is the mother of two severely allergic children has discovered about it through her extensive contacts with other mothers: http://home.allergicchild.com/food-allergies-mast-cells-hitting-your-threshold/
QUOTE: Additionally, with the Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) research that’s currently being done in an attempt to find a cure for food allergies, it concerns me greatly that children participating in a research study may not be aware that they might be trading one disease for another.
They may be getting rid of their food allergies, and end up being diagnosed with EoE or a mast cell disorder somewhere in their future.
In fact, some children have to cease participation in a research study because of a diagnosis with EoE, that later resolved after ending peanut desensitization.
Research on milk OIT was reported at the recent AAAAI meeting where patients were found to become more reactive to milk after three to five years of desensitization.
I’m wondering if this is because a threshold has been reached where their immune system has gone into a constant state of reaction – another way of explaining a mast cell disorder.
END OF QUOTE
My Comment: That's what persuaded me to research Ketotifen because I'd been reading about it in Dr. Afrin's book and how beneficial it is for difficult patients who do not respond to ordinary antihistamines.
So, I got curious to find out what Ketotifen's adverse effects and risks might be. You will surely want to research these side effects for yourself first before deciding whether to take a chance on it.
However, Ketotifen does sound very promising for desperate situations whenever its benefits could outweigh its risks.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
PS re: Ketotifen -- for LymeToo, I realize that you would prefer to avoid all antihistamines, if possible, but it seems to me that you are beyond that point in your illness now.
It seems to me that you might need to use antihistamines and/or Ketotifen as a crutch temporarily in order to be able to tolerate enough foods to get proper nutrition for your body to start to heal....
....and then gradually reduce these Rx crutches as your improved health allows you to do so.
That's how the Low Histamine Chef did it, remember? It worked for her. She didn't get well overnight!
It took her a decade to figure it out, but she blazed a trail for others to follow, so hopefully it won't take others that long to achieve optimum health again.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
For anyone interested in pursuing an MCAS/MCAD diagnosis, you will most likely need to travel out-of-state because there are not very many centers in the US yet which recognize this disorder.
"I’m wondering if this is because a threshold has been reached where their immune system has gone into a constant state of reaction – another way of explaining a mast cell disorder."
When I googled "Facebook + Mastocystosis", I got a whole bunch of different Facebooks groups. So, which FB-Masto group is it that you are referring to where one can find a list of Masto-friendly/literate doctors? TIA.
After all, it's no wonder there are more masto-friendly docs than LLMDs. The Powers That Be aren't trying to take away their medical licenses for treating it!
In fact, the AAAAI (mainstream allergists group) has embraced the Driscoll Theory 'cause that's where I first learned about MCAS.
BTW, let's not forget that Bb can activate mast cells. There are no less than 3 PubMed abstracts, plus numerous citations for each of them, and they date all of the way back to the late 1990s -- ie. nearly two decades ago.
In other words, it has taken a very long time for this concept of mast cell activation to catch on in the Lyme community. Lyme MD has a couple of fairly recent articles about MCAS. But that's because the concept of MCAS is still so very new -- just since 2007 when the first papers on MCAS came out.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Here's a great interview article with Dr. Diana Driscoll by the Low Histamine Chef about the Vagus Nerve and POTS and Mast Cell Activation.
NB - Be sure to remember to read the first comment posted at the end of the article because someone got into bad trouble (gastroparesis) from using the special nutritional supplement discussed in the article which Dr. Driscoll originated and which she sells on Amazon.
(Gastroparesis is gut paralysis -- no fun at all and leads to SIBO - small intestinal bacterial overgrowth.)
Here's a link to Dr. Driscoll's VNS (vagus nerve support) website which has more detailed info about her products: https://vagusnervesupport.com/
Here are links to the ingredients list for the questionable Parasym Plus product found on the VNS website, followed by another link to the FAQ about this Parasym Plus. https://vagusnervesupport.com/ingredients/
BTW, let's not forget that Bb can activate mast cells. There are no less than 3 PubMed abstracts, plus numerous citations for each of them, and they date all of the way back to the late 1990s -- ie. nearly two decades ago.
In other words, it has taken a very long time for this concept of mast cell activation to catch on in the Lyme community.
-
That is exactly why I posted about my experience. I'm hoping others here will figure out why they are having so many issues that antibiotics don't seem to help.
The Masto site is "Mastocytosis and Mast Cell Disorders Holistic Approach." I think that is right. It's one of the largest groups.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Someone on another board just posted this. I think it's relevant for my case. I'm having trouble with oxalates too.
-
"I believe that a lot of the post-cipro issues are due to it destroying all our oxalobacter formigines The oxalates that aren't being broken down then irritate our mast cells (a very simplified description). I am trying to gradually increase my good bacteria and using niacinamide to calm my system. I can eat a lot more foods now."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
When you think, it makes all the sense in the world. The lone star tick(ehrichiosis) causes an anaphylactic reaction when the person who was bit, eats red meat. This reaction could be a low grade allergic reaction through the intestines. Inflammation like that would cause a cascade of problems.
I think we'll find more correlations with tick bites & allergies as time goes on.
I suspect many of us will find that lyme was not chronic but triggered this disorder. Maybe in many of us it's both but can be managed so much easier on a low histamine diet.
For me, a a part of a zyrtec, (cetirizine) with food helps. Never would have thought an 88 cent medicine in the Wal Mart could have made such an impact.
Important to be open to new ideas. It's very easy to be married to the idea that it's chronic.
I know I was psychologically & financially invested in chronic lyme so I stuck with it. I still know so many sick who won't even explore this. It may not be a cure for some but it can turn an awful quality of life into a manageable one.
I'm curious to know what would've happened had I addressed Mast Cell early. Maybe no need for PICC or abx...
It takes a want to get better. I've noticed many don't want to which I understand. This illness will beat someone down. But get knocked down 7 times, get up 8. It also takes the one luxury you have which is an already limited diet & limits it further unfortunately. But maybe the foods that were being avoided could be introduced back into the diet as the histamine lowers.
Ironic that Mast Cell sounds awful but Multiple Chemical Sensitivity sounds like a walk in the park.
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Six, you say that histamine & MTHFR are all that's left. Do you think it's possible that this could have been the problem the whole time?
I find it hard to put myself back into my old body & think that a low histamine diet would have helped. But I have to consider it since bloating and rashes were always in the picture & my first symptom before lyme.
posted
I know .. it does give one "pause" .. Remember all the talk of the Claritin "cure?"
You would not believe how many Lyme patients are on the histamine and mast cell facebook groups. I knew I was in the right place when I began seeing all the Lyme patients there. It's mind-boggling.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by droid1226: Six, you say that histamine & MTHFR are all that's left. Do you think it's possible that this could have been the problem the whole time?
No. No way. I don't disagree with your statements and think it could be part of it from the beginning. Who knows whether addressing these issues in the beginning could help the body have strength enough to fight Lyme. I don't know.
But I've been living a healthy life for the past 5 1/2 years, healthier than most people my age, but have had a few ongoing issues. Addressing histamine helped with the random allergic reactions I was having, some of which put me in the hospital even though allergy testing only revealed "minor" allergies. These symptoms were different than "Lyme" symptoms. They were clear reactions to food.
I had more of a tangible result from addressing histamine intolerance than I did addressing MTHFR. Taking the MTHFR supplement made me detox more. I'm releasing heavy metals again, for example. Testing before hadn't even shown I still had metals. They were deeply buried. More recent testing showed mercury, so I'm detoxing that with the help of MTHFR supps. So far, I'm feeling worse from that as they are released, but like anything, it's ups and downs. My "downs" are still much, much different from the downs of Lyme. And my ups are days I even have more energy than my kids.
I haven't had that lead suit feeling Lyme gives ... or fibromyalgia, which I was diagnosed with ... or shortness of breath (except for during allergic reactions), brain fog, insomnia, etc., for over 5 years, yet it's only recently that I've addressed these other issues.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
All that being said, I do think it's our bodies that set the stage for getting sick with Lyme Disease. The two issues I have are both genetic. So with my body not methylating right and with being in a constant state of inflammation from histamine and toxins, the stage was set for when I got bitten for it to make me crash.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Am reading all this with interest.
I had an appt. yesterday with my allergist/immuno.
(Six years ago was Dx'd with immune deficiency ie HypoG/CVID - different doctors).
I asked this doctor about allergies and mast cells. He said it would be impossible for someone to be truly immune deficient but have IGE allergies and/or mast cell problems. ???
An interesting wrinkle...........more weirdness.
Dunno - maybe I don't have a Primary Immune Deficiency - maybe I have a Secondary ID - caused by Lyme? Thereby capable of producing Immunoglobulin E and whatever is involved with MCAD.
I'll write more about this under a thread I started a few weeks ago.
Suffice to say - I am supposed to be taking antihistamines. Which I have avoided in the past due to making my dry eyes/mouth worse.
And.....in the news lately - isn't there something about these drugs playing a part in dementia???
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Too, good to know. I'll check them out. Who knows...This could be the first major breakthrough in lyme treatment or at least a filtering process to lower the surging number of lyme cases.
Six, I guess I minimized actually how bad I was. I remember 2 yrs in bed too weak & sick to walk. Just wish I knew about this then. It's probably an unproductive question at this point but it really interests me.
Just thinking about before I crashed, I turned my body into the perfect ecosystem to get sick & now I know histamine enzyme levels were a trigger. But ya, they weren't the only factor though.
Maybe knowing this could "fast forward" others who are at the early stages of treatment. Or at least be an easy option for people to try before bombing the body with abx or whatever.
In retrospect, I can't say antibiotics helped, with certainty but it's hard to judge treatments objectively because results were so subtle & drawn out.
I do have the single MTHFR left to address as well but after so much research on it, it still seems very speculative as far a treatment protocol. Such a balancing act of so many variables.
For me, coffee enemas are the most universally effective treatment for MTHFR. Albeit, they aren't my cup of tea, so to speak..they can replace my inefficient liver. The benefits are endless. After consecutive months of daily treatments, my metals were significantly lower as well. I never found methylation/folate/B/Yasko supplements beneficial.
Also Six, I think I remember you talking about eating fermented sauerkraut with every meal, is that off the board now that you're managing histamine levels?
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
No, I wasn't thinking about how bad you were or anything like that .... I was just saying for me, I know it wasn't the problem. I think the time to have known about this stuff would have been before I was bitten! If our bodies had been healthy, maybe we would have been able to fight the Lyme before it took hold.
My homocysteine was high, so I'm taking Homocysteine Supreme for MTHFR. I did many coffee enemas, I don't feel I need that anymore and they're kind of time consuming. I take milk thistle and NAC for my liver. What works is probably different for everyone.
I did eat sauerkraut every meal for a while when I was rebuilding my gut. Not caused by it, but I got a kidney infection (four years ago) and contracted c diff when I was in the hospital and didn't know it. I finally found out 3 years later (a year ago) and treated it. So, as a result, my gut was destroyed again after all that work.
I was having random allergic reactions back when I was eating the sauerkraut every day. Had no idea they were related. I knew nothing of histamine then. I'm trying to ease back into taking probiotics.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
No, I know. I was sort of typing out loud, thought I had an ah-ha moment but you're right. I'd like to think that this was all just histamines the whole time, but I know systemically the problems run deeper for most people here.
That's awful about C-diff. I just read somewhere that hospital error is now the 3rd leading cause of death in U.S., right behind cancer. Reckless healthcare.
Anyway, good info.
That's good to know about sauerkrat. I know a few people who eat it regularly, it might be detrimental depending on what stage of recovery they're in.
In one of Lymetoo's links, I found this really cool. It's a very basic test to check if you're immune is overreacting with histamines.
posted
Yes, I have the dermatographic skin. At least it's not a problem, as such.
I did get myself into trouble by overdoing the sauerkraut. I was trying to heal my gut. That was not a good move, but as Six said... It didn't CAUSE the illness.
I have been taking Curcumin for years and I imagine it has lowered my DAO, but it is the ONLY thing I can take for pain and inflammation.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Tutu - thanks. Not sure what to believe. I think this doctor is saying maybe I don't have an immune deficiency and don't need IVIG.
I looked at old lab tests and the higher my total IGG - the higher my total IGE. My IGG of course goes higher with IVIG. I guess my body is making IGE antibodies against the IVIG.
So I will be off IVIG/SCIG for three months - get it out of my system - then do more testing.
Something going on - I feel certain triggered by Lyme and Co's. Allergies and mast cells and who knows what else.
FWIW I have read where it is possible to be immune deficient ie CVID - and still make IGE antibodies. Some gurus/doctors say that can't happen - some say it can happen.
Will continue to research the MCAD stuff - see what I can do on my own that regard. Thanks for the thread.
Oh - and while at the doctor - waiting - I saw a poster about Xolair. A friend of mine takes it for asthma. I was going to ask the doctor about it for me - had it in my notes to ask in regards to IGE. Interesting that Xolair used for mast cell degranulation - something like that.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Ya, in the past couple yrs turmeric has been shown to do everything but raise the dead. It's overwhelming health benefits outweigh one possible negative.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you Lymetoo, I do struggle with MCAS.
SusanK, not all allergists are knowledgable in all conditions (especially CVID & MCAS). Also, you do realize that your doctor has given you false information, right?
You need to see a doctor that specializes in Mast Cell disorders. Only they will be able to properly evaluate you and run the right tests needed to diagnose one of the Mast Cell disorders (there are more conditions than just MCAS!)
My Ehler's Danlos Geneticist referred me to my Mast Cell specialist after I had anaphylactic reactions to Toprol XL and Coreg, both beta blockers (prescribed for Autonomic dysfunction & low blood pressure).
Apparently, those anaphylactic reactions are common Mast Cell reactions. Big sign.
I've been allergy tested and have no IgE reactions. The only thing I reacted to was the histamine control and that formed a crazy welt!
The tests done by the Mast Cell specialist revealed that I have MCAS. The doctor suspects that I have a more severe form of Mast Cell Disease but would need a bone marrow biopsy to diagnose it.
To control my symptoms, I take compounded Ketotifen capsules, Xyzal, and Pepcid, all twice daily. I also take Gastrocrom 4x daily. These are my Life Savers!
Those who can chose not to take medication are blessed. I have no choice. It is dangerous for me not to take both mast cell stabilizers and histamine blockers.
I cannot eat any of the recipes that the Low Histamine Chef posts. They looks so yummy and healthy! But not for me. My body revolts.
Some days, all I can eat are whey smoothies made with milk or Boost! I know, some may people freak out and because it isn't low carb! When you don't tolerate anything else, Boost becomes acceptable.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
Good to hear from you, sammy. Very good information for all of us. Thanks!
I cannot eat what the Low Histamine Chef eats either. I'm glad I'm not the only one who has "failed" at that!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Also, since I'm posting, clearly you can have an Immune. Deficiency and have MCAS (or any other Mast Cell disorder).
Also, IgE allergies are not really involved or should I say, not the main cause of Mast Cell Disorders/Reactions. Mast cells can be triggered and cause reactions by foods, heat, activity, emotions, infection,...
My Mast Cell Specialist is the head Allergist at the hospital where I also see my Clinical Immunologist (Hematology/ Oncology dept.) for CVID. I'm told that people travel from far away to see my Mast Cell Specialist.
SusanK, why would you stop your IVIG? You don't need to stop it for Mast Cell testing.
Sounds like you need better guidance from a Clinical Immunologist. Is it possible that you can get a second opinion at maybe a University Hospital?
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
No IgE allergies here either. What's weird is that many years ago I was treated for tons of IgE allergies with allergy shots.
I hope Susan comes back!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
The blog mastattack.org has a wealth of information to help you understand the basics to even the most complex topics that involve Mast Cell diseases.
This has been the most helpful, concise source of information for me. It touches on topics that are not discussed elsewhere!
You can now search the blog by topics which is nice. (Some do contain personal experience which I like!)
For each topic you read, the original research articles are included as a reference so you can learn more if desired.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I feel pretty icky but will try to reply.
FWIW there has been discussions on the IDF forum about speakers at conferences saying folks with immune deficiencies don't have true allergies. If they mean IGE - don't know.
I could see if one had SCID that no IGE would be made.
But for HypoG/CVID - dunno. I think IGE is a different class of Immunoglobulin? Whereby low levels of G,A,M would not mean low/no IGE. But if they all start life as B and or T cells?
But yes I have read and others have said - that HypoG/CVID one can have elevated IGE levels.
Here are my labs this regard: (IGE and IGG)
Oct 2009 ~130 - no ID suspected yet July 2010~180 - testing - total IgG 560's Dec 2011 ~380 - had tried IVIG - off four months April 2013 ~1450 - 9g/week SubQ - IGG 1100's March 2016 ~320 - 2-3g/week SubQ - IGG 660
I had a horrible time with the 9 g/week so I ordered the GAME test myself. I remembered I had these results - so showed them to the doctor last week.
To me it looks like I make IGE antibodies to IVIG/SCIG. The doctor seemed to agree.
I don't know if IGE in 1400's is considered high. ?
Anyway, the doctor said to be off SCIG for three months to do testing. Check my IGG and IGE then.
Also....I never have done the vaccine challenge. I'll need to do that. (debating...)
When doing testing years ago Labcorp averages for IGG around 560. Quest one time 500. I have three subclasses deficient. Total IGA deficient but not terribly so.
Looking at labs results from previous years - I note that before my "crash" (Lyme?) my Globulin and A/G ratio normal on CBC/CP's. Then that changed - to Globs being low and A/G ratio high.
Could Lyme/Co have caused a secondary ID?
Around the time of my Lyme Dx - I was Dx'd with an immune deficiency - HypoG. Started on IVIG. Curiously around that time is when I started getting bad respiratory infections. Hospital/ER's for IV Rocephin etc.
The past couple of years I have not had these resp. infections - and curiously that during the time I asked to be on a much lower dose of SCIG.
Coincidence? All so complicated......
I know I am having allergies. IGE and maybe mast cell.
I am also a chemical sensitive and have been childhood. It hasn't happened since my early 20's but I would break out in hives when trying on new clothes or sleep on unwashed sheets.
And......my first IVIG of 30g. Did fine during infusion. The next day I went to blow my nose - as usual - with toilet paper. Felt like my head was going to explode. I was hot with infused antibodies and whatever chemicals in the toilet paper (I inhaled or just came in contact with) my body said a big NO to. That reaction defininitely caused by the IVIG.
I'm not so sure I want to continue with IVIG or SCIG. Perhaps too many side effects for me.
Whatever I do - I feel worse day by day.
Sorry I wrote so much - cannot condense.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
I think the time to have known about this stuff would have been before I was bitten! If our bodies had been healthy, maybe we would have been able to fight the Lyme before it took hold.
Printer-friendly view of this topic