-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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droid1226
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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
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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: 96222 | From Texas | Registered: Feb 2001
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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.
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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
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susank
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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
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droid1226
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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?
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
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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droid1226
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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: 96222 | From Texas | Registered: Feb 2001
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susank
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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
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droid1226
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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: 96222 | From Texas | Registered: Feb 2001
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sammy
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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
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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: 96222 | From Texas | Registered: Feb 2001
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sammy
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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
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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: 96222 | From Texas | Registered: Feb 2001
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sammy
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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.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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susank
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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
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"While it is an immune disease, it is not technically autoimmune. It can occur secondary to autoimmune disease or falsely elevate autoantibody levels, but MCAS is not technically autoimmune as there are no antibodies directed at the mast cells.
I generally describe it has an overactive immune system that causes mast cells to be trigger happy increasing the histamine load which causes the body to act as if it is allergic to almost everything even when not truly allergic to a substance."
"This is a GREAT explanation, thank you. I have a hard time explaining how I can have MCAS and immunodeficiency. I guess MCAS is allergic immune responses and immunodeficiency is bacterial/virus responses. To be honest, I still don't understand. But it is in Dr Afrin ' s book about it being a possibility."
"I tell people my husbands mast cells are normal numbers, but they are dysfunctional. They release too much histamine which causes inflammation. With enough inflammation, it attacks organs and systems until they become dysfunctional or damage. My husband is MCAS.
I and our kids are SM. I explain it the same way except our bone marrow produces too much of the precursor to mast cells...we have too many mast cells."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I think it's working. I have had a little easier time eating more foods, but then I overdo it and have setbacks.
I have resigned myself to begin using an anti-histamine on a more regular basis. I feel so much better when I take them, but I really don't want to take them!!
Thanks for asking. I hope that if this is an issue for you that you will be able to find someone to help you.
The cromolyn can take up to 6 months to kick in and I'm only beginning month 3 now.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TX Lyme Mom
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posted
LymeToo, This might seem off-the-wall and totally unrelated, but in our experience, our daughter has often suffered from multiple food intolerances anytime that her mold allergies were out of control. We had a recent reminder of this after she moved to Houston 3 years ago.
I worried that she was having a Lyme relapse, but she insisted that it was inhalant allergies instead -- primarily molds and pollens in the warm, muggy Houston climate. She went back to her old AAEM allergist and he suggested mold allergy shots, which she agreed to.
It was like flipping a light switch. She walked into his office so ill that I had accompanied her for fear that she wouldn't be well enough to drive back home again in the metroplex traffic, but by the end of the day after he gave her a neutralizing dose of mold extracts, she felt 100% better almost instantaneously -- well, within 30 min.
I couldn't have imagined it, and I probably wouldn't have believed it if I hadn't been there in person to witness it. It made a tremendous difference in her appetite and in her ability to digest foods again -- immediate effects, too, because we went out to eat together at the end of the day, and she ate voraciously.
You live in an area that has had a lot of bad storms this spring, with possible flooding which can lead to both indoor and outdoor molds. Knowing as we do how great an impact mold allergies can have on the GI tract and on allergies in general, I would encourage you not to overlook the possibility that mold exposure could be at the very root of your mast cell activation.
Remember, molds produce mycotoxins, and toxins are at the very heart of mast cell activation, if I understand the theory behind it correctly. Furthermore, we swallow the mucus from inhalant allergies, and those toxins enter the GI tract and impact our gut flora, so this idea is not as far-fetched as it might seem at first glance.
The best allergists for treating this are members of the AAEM (American Academy of Environmental Allergy), in our opinion. They do the old-fashioned skin testing called "provocative neutralization" (PN), and in our experience, it is the very best testing technique for treating mold allergies effectively.
One way that it is different, and this is VERY important, is that each mold is tested separately, and then your personalized antigen extract is made up of these various components by a compounding pharmacy just for you. These are NOT stock mold mixes, which other allergists use.
You can be exquisitely sensitive to one or two particular molds, but much less sensitive to other molds in the same group. That's why they are tested separately so that the dosage for EACH mold is calibrated (if that's the right word) precisely into your compounded mold extract so that you are not over-treating one mold while under-treating another one.
This form of allergy testing is more costly than routine allergy testing because it is very labor-intensive and time-consuming, but it is the most cost-effective method of treatment, in our opinion, for molds and other inhalant allergens, such as dust mites and animal dander, etc.
There is an excellent AAEM allergist in your area who also treats Lyme disease. You probably know whom I'm thinking about. I would encourage you to consider this possibility because I know how much it has helped our daughter with her digestive issues and food intolerances. Feel free to PM me for more details, if needed.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Thanks, TXLM .. I know I've had mold exposure but I think we are OK here. I tested for mold last year and nothing showed up.
Wouldn't SOMETHING have shown up on regular allergy testing? I've had it done twice in the past two years. Nada.
Joe .. No, it takes several months for the cromolyn to work. I felt better in a few days though so I was encouraged by that!
Yes, to low blood pressure. Very common with MCAS, but I also take Verapamil for my heart.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TX Lyme Mom
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posted
quote:Originally posted by Lymetoo: Thanks, TXLM .. I know I've had mold exposure but I think we are OK here. I tested for mold last year and nothing showed up.
Wouldn't SOMETHING have shown up on regular allergy testing? I've had it done twice in the past two years. Nada.
LymeToo, Check your PM for a more detailed response. For the sake of others who might be interested in an answer to your question, it all depends on what method of allergy testing was done?
For example, mainstream allergists often test for allergies in the blood, by the RAST method, which depends on IgE. But if you have low IgE, as some folks do, then you would get a "false negative" test result.
I don't want to bore everyone else with any more details than just this because I don't want to detract from the main theme of your topic. That's why I'm sending you a PM instead.
posted
Insurance pretty much covered it but unfortunately my insurance changes in a couple of months.
Is there a generic?
My stomach wasn't to bad today until I had some leftover veggies and I felt them.
I break into sweats after eating ,also gerd and congestion after eating,you?
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sammy
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posted
Cromolyn Sodium is the generic form of Gastrocrom.
It helps me greatly with the GI issues but is not a cure.
Be sure to take it at least 30 min before eating and on an empty stomach. You MUST do this consistently. If you skip doses, you won't see the positive results! I learned the hard way...
I still take Xyzal (RX new Zyrtec) twice daily, Pepcid twice daily, and 2mg Ketotifen compounded capsules twice daily.
The Ketotifen has helped the most as it is both an antihistamine and a mast cell stabilizer.
I still have significant symptoms. It would be nice if my doctor increased my dose of Ketotifen. Ideally, I would like to increase it until I could start dropping the RX H1 and H2 blockers.
If you are interested in Ketotifen, Infuserve America compounds the capsules with an RX. The pharmacists are super knowledgable and helpful. They have excellent competitive prices too, so no worries there! (My only wish is for my insurance to cover it!)
I try to avoid known triggers, including foods but that is hard. My symptoms are triggered after short bouts of activity (such as getting dressed and brushing teeth!), emotions, heat, and the biggest trigger seems to be Lyme and Co's (as I got reinfected last summer too).
For me, "trying" to avoid triggers is nearly impossible. I do my best. The medications help me to not react so strongly and inappropriately so often so I don't have to fear a bout of anaphylaxis.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I'm seriously considering trying MCAD treatment. The Cromolyn I was prescribed is inhaled via nebulizer 4x a day. Are the rest of you using an oral Cromolyn? I wonder if a nebulized version works faster or something...
Posts: 748 | From Texas | Registered: Feb 2015
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Silverwolf
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posted
Just Silverwolfi here,
I got a reminder to check this thread again, Thank You <<<<< TXLM >>>>>!!!
And <<<<< Lymetoo, and each replier >>>>> for getting the info' links and thot's, where we can find them to do more research!!!
I'll be back in to read thru these links.
Jus' that Silverwolfi here.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Sick Sam .. I would think the nebulized version would be for asthma. The Cromolyn I get is in "ampules" .. they are mixed with water and I chug it down. Pretty tasteless. Four times a day.
Silver .. I hope you can find a way to get better!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I think it usually is for asthma, but this was prescribed along with a -bunch- of other stuff for MCAD by a LLMD who treats MCAD frequently. The 4x a day does match up with what you do, though. Maybe it's just another route of administration.
He prescribed this almost a year ago and I'm just now getting around to thinking about trying it. I've realized histamine and mast cells are probably a much bigger problem for me than I originally thought.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
uuuugh,all the histamine food lists contradict.
What one do you follow?
Posts: 227 | From fairhaven ma | Registered: May 2015
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droid1226
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posted
Joe, you could try eating raw because in general it's lower histamine. Also take a couple antihistamines for the raw foods that aren't low histamine.
It could make all the difference, I think it's worth a try. This was my simplified way to go low histamine cause I was so frustrated with diet lists that contradicted each other.
posted
Sam.. The ampules are so the med gets into the gut. That helps prevent the mast cells from breaking down.
Everyone is sensitive to different things, so it's all trial and error.
Don't forget about Dr Afrin's book as being another great resource. It could be an eye-opener for you. If you tackle MCAS and Lyme at the same time you should recover more quickly!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Thanks Lymetoo I sincerely think I'm gonna do this. After all this time I feel like I might be able to get a handle on this disease finally, if my heart can hold out a little longer.
"LymeMD" is who prescribed the nebulized Cromolyn for MCAD, and he says people respond quickly to it. I also read a case of MCAD causing pericarditis and Cromolyn helping, so I'm really hoping this will help my heart.
When I had a strong response to a histamine wheal during allergy testing I realized I had a histamine problem. Then I realized the reason my face stays swollen is because of histamine. I think treating MCAD and Lyme together will keep my body from making a bigger mess of itself when Lyme is killed!
Posts: 748 | From Texas | Registered: Feb 2015
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posted
Also, I'm NOT saying I recommend this, but I just want to put it out there for anyone that might get an "aha" moment from it...
LymeMD told me that benzos (like klonopin) can inhibit mast cell activation. Since I was taking a benzo at the time, I was told to break it up and take the pill throughout the day to inhibit the mast cells.
I don't like benzos, I'm off them now, but if you've been helped by a benzo perhaps it was doing more than just stabilizing your mood. Maybe, possibly, it could've been stabilizing your mast cells too. More info can be found using our friend Google.
Posts: 748 | From Texas | Registered: Feb 2015
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Lymetoo, looks like maybe you're right about the nebulized version:
From http://lymemd.blogspot.com/2015/06/mast-cell-activation-disorder-mcad-new.html?m=1 ---- "Cromolyn however, is the most effective mast cell stabilizer. Cromolyn is available in nasal in oral inhaled forms which may not be terribly effective. In my experience, Gastrocrom, the oral form, is very effective. Only a small percent is adsorbed systemically but this seems to be enough. The drug comes in a liquid form needs to be dosed 4 times per day. Two ampules or 10 cc works best." ----
So now I'm left wondering why I was prescribed the nebulized version. I'm sure there's a reason. So many questions...
Posts: 748 | From Texas | Registered: Feb 2015
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I really don't think it was a cost thing. He assumed insurance was covering everything, so he never really paid much attention to cost. So I really don't know...
Posts: 748 | From Texas | Registered: Feb 2015
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I just found this case report. A woman with MCAD was on H1/H2 blockers and oral Cromolyn. She required the addition of nebulized Cromolyn for further improvement in fatigue and bone pain.
I'm still trying to put all the pieces together! Looks like the nebulized version does something at least.
Posts: 748 | From Texas | Registered: Feb 2015
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"It is poorly absorbed through all body surfaces apart from the bronchial mucosa where the entire drug reaching the bronchial mucosa after inhalation is absorbed."
That must be why she got better. I noticed it was the first time it was used for SM. Date was 2010.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Very interesting thread. Looking into this myself and trying to find a doctor that can provide a diagnosis.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6144 | From Columbus, GA | Registered: Jul 2004
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
OK, have an appointment for the 20th with an allergist. Hope he's the right kind of doc. Talked briefly with office staff and they said he does treat MCAS. Fingers and toes crossed!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6144 | From Columbus, GA | Registered: Jul 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I trying to read all this , sorry if I missed this one, but has anyone tried taking NeuroProtek ?
how was it and whats the difference between the original and the low phenol?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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The low phenol would be for those of us who are sensitive to salicylates. I'm still too chicken to try it. It's pretty expensive only to find out that one pill would make me ill for 48 hours.
I would suggest buying Dr Afrin's book and then get on one of the Mast Cell FB groups. They have lists of doctors who can help you.
It's like trying to find an LLMD, only worse. Hopefully, the news is spreading and more doctors are being educated.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I probably have this, since I react to everything.
But I find it interesting that lone star ticks can cause red meat allergies. I'm betting we become allergic to way more things than just red meat after being bitten by a lone star tick.
Maybe being bitten by a lone star tick plays a part in abnormal histamine reactions.
posted
---and lucky me, I've probably been bitten by about 100 of them .. at least.
We grew up going to our cabin in the woods and got tick bites every weekend. We had no clue they could be dangerous back in the 50's and 60's.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
My hand is up. I'm fighting chronic Cpn -> infection triggered asthma (IgE to Cpn is up.)
Cpn and Bb both trigger H2R. Remember Tritec?
Neutrophils release histamine and mast cell degranulation -> histamine release.
MANY foods are high in histamine which is harmful to a fetus, so pregnant mom's Cu DAO enzyme soars.
Look at the eating for your blood type diet...what you shouldn't be eating, but love.
There's an alternative...taking the lectin (a protein) blocker for your blood type (before a meal) and daily prebiotics and probiotics as well as a daily vit. supp.
Far easier for me (B+) than giving up chicken and corn...This is what I ordered to try:
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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.
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