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Does anyone know anything about Cromolyn or low dose Naltrexone?

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Posted 10/5/2018 8:32 PM (GMT 0)
Just saw a hollistic allergist today to determine whether or not lyme has triggered mast cell activation and food sensitivites, and while we’re waiting for the results (which could take 4-6) she prescribed me to start two meds to see if they are any help in the meantime.

The first is Cromolyn, which is supposed to be an immune system regulator. I am just wary to start it without a definitive diagnosis and wonder if it would do me any harm to try it if the results come back saying I don’t need it. The allergist assured me its fairly benign, but would anyone who is familiar with it be able to share their experience?

The second is low dose Naltrexone, which from looking into it seems to be an immunosuppressant. Dealing with an infection makes me EXTREMELY reluctant to take any sort of immune suppressing drug, but my allergist said she has prescribed it to lots of people dealing with lyme disease and coinfections and they haven’t had any problems. My immune system has been overreactive, but I am worried that suppressing it will only allow my infections to advance even further. Does anyone know anything about this drug and what exactly it does?

Post Edited (SicklySkald) : 10/5/2018 2:41:45 PM (GMT-6)

Posted 10/5/2018 8:49 PM (GMT 0)

SicklySkald said...
Just saw a hollistic allergist today to determine whether or not lyme has triggered mast cell activation and food sensitivites, and while we’re waiting for the results (which could take 4-6) she prescribed me to start two meds to see if they are any help in the meantime.

The first is Cromolyn, which is supposed to be an immune system regulator. I am just wary to start it without a definitive diagnosis and wonder if it would do me any harm to try it if the results come back saying I don’t need it. The allergist assured me its fairly benign, but would anyone who is familiar with it be able to share their experience?

The second is low dose Naltrexone, which from looking into it seems to be an immunosuppressant. Dealing with an infection makes me EXTREMELY reluctant to take any sort of immune suppressing drug, but my allergist said she has prescribed it to lots of people dealing with lyme disease and coinfections and they haven’t had any problems. My immune system has been overreactive, but I am worried that suppressing it will only allow my infections to advance even further. Does anyone know anything about this drug and what exactly it does?

There have been discussions about the ldn here - it has worked for some people but not everyone (including myself)

Low dose naltrexone isn’t an immunosuppressant drug.

It temporarily blocks opioid receptors

“The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production. “

If you do try it - start at low dose and slowly increase until you get results and then hold that dose.

I don’t know anything about Cromolyn.
Posted 10/5/2018 9:01 PM (GMT 0)
LDN has been helpful in my case. It supposedly helps the immune system and can be helpful for pain and sleep. Dr H uses it with quite a few of his patients.
Posted 10/5/2018 9:18 PM (GMT 0)
I see, if its thats its function I wonder what makes it such a gamble as to whether it will be helpful or not.
Posted 10/5/2018 10:21 PM (GMT 0)
While it can help some patients, others do sometimes feel worse on it. Per usual, it's a lot of trial and error with these diseases! I think it's one of those meds that is often worth trying just to give it a shot, since for some people it can be quite helpful.
Posted 10/7/2018 5:33 PM (GMT 0)
I used to take LDN for tick borne infections and I never noticed anything too significant from it, I took it before bed. I have never taken it for MCAS.

I take Cromolyn now for MCAS. It is a mast cell stabilizer. It is helpful for me at very low doses, decreases the severity of reactions and allows me to consume a slightly broader diet.
Posted 10/7/2018 6:07 PM (GMT 0)

sunny40 said...
I used to take LDN for tick borne infections and I never noticed anything too significant from it, I took it before bed. I have never taken it for MCAS.

I take Cromolyn now for MCAS. It is a mast cell stabilizer. It is helpful for me at very low doses, decreases the severity of reactions and allows me to consume a slightly broader diet.

It’s a pharmaceutical ?

Any side effects/risks?

And is it off label using it for MCAS or is that what it’s intended for?
Posted 10/7/2018 7:33 PM (GMT 0)
It is a pharmaceutical drug and it is a mast cell stabilizer meaning it prevents mast cells from releasing chemical mediators that cause allergy-type symptoms and anaphylaxis. It is used to treat mastocytocis and mast cell activation. Some people nebulize it, some take it orally to stabilize the many mast cells in the GI tract.

Often those with mast cell disorders react allergically to many medications including Cromolyn. You need to titrate up very slowly and if reactions occur you may need to stop the drug.

It has side effects as many drugs do, listed online.
Posted 10/7/2018 11:31 PM (GMT 0)

sunny40 said...
It is a pharmaceutical drug and it is a mast cell stabilizer meaning it prevents mast cells from releasing chemical mediators that cause allergy-type symptoms and anaphylaxis. It is used to treat mastocytocis and mast cell activation. Some people nebulize it, some take it orally to stabilize the many mast cells in the GI tract.

Often those with mast cell disorders react allergically to many medications including Cromolyn. You need to titrate up very slowly and if reactions occur you may need to stop the drug.

It has side effects as many drugs do, listed online.

This is great information to know, thank you! Its good to hear that it works for you as well. I have been prescribed the oral solution, though my symptoms are more upper respiratory than GI so I wonder if I shiuld look into getting the nebulized version. I’m also not sure how to start it slowly as the the RX packaging warns against altering dosage or missing a dose.
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