Something that's helping me.....

[twilight7]

Hi,

I just want to share a chance discovery that I've made in the hope that it might help some of you. My doctor has been willing to prescribe sodium cromoglycate (Nalcrom) off licence to help severe food intolerances I have. Firstly - it has helped. The crushing fatigue I normally get with eating yeast , sugar etc. just doesn't happen. But the more important discovery I think is this - in the past I have tried just about every probiotic going because I am convinced that that would be the route to recovery for me, I know my gut is seriously unhappy, yet I have had to abandon all attempts because they make me so ill. However, with the nalcrom for the first time I am tolerating probiotics. No reaction whatsoever. I'm only taking those yogurt drinks at the moment (actimel) but I intend to try more potent ones soon. But already my muscles seem to fatigue less.

Be interesting to hear of any similar experiences. But I would say that, for those of you that have severe reactions to food, Nalcrom, if you can get it, is worth a go. It's the first drug I have actually been able to tolerate. Hope this helps some of you,

Gemma x

 

[Mary]

@twilight7 - I'm really glad you found something to help you. I am wondering, since you react so strongly to yeast and sugar, whether you have systemic candida. My sister cut out all wheat and sugar for a couple of weeks, and then when she ate some during the holidays, it made her very tired and not feeling well, and she thinks she has a candida problem.

Have you tried cutting out all wheat, gluten products, dairy and sugar to see how you do?

 

[twilight7]

Hi Mary,

Yes, I'm sure that I do. I've cut all those things out for the past 10 years and that's what enabled me to go from being bed-bound to having some sort of life. Even though I cut them out though there was never an improvement in symptoms when I re-introduced them , I always reacted just as badly until now. I'm really hoping that the nalcrom might enable me to treat the root of the problem with probiotics and it's just nice to actually enjoy a wider range of foods for once after following such a strict diet for years. I think what it points towards it having some sort of mast cell activation disorder as I also have pots and ehlers danlos.

 

[Valentijn]

I took the inhaled form, Intal, when diagnosed with Exercise Induced Asthma (maybe just mild ME/CFS) about 5 years prior to moderate/sever ME/CFS onset. It was the only drug which helped me - corticosteroids made me feel worse, and albuterol just made me jittery.

It's one thing I'd like to try again some day, if other treatments leave some lingering symptoms.

 

[garcia]

@twilight7

Hi Gemma,
very interesting feedback on Nalcrom!
Which form of Nalcrom did you use? I notice that there are 100mg capsules available. Its also available as nasal spray, inhaler & eye drops.
If you were on the capsules what dosage were / are you taking?
Many thanks!