Help! Symptoms are driving me crazy!

[alex3619]

I have only had a cytokine storm twice - once with a flu or something and once with food poisoning, never with meds. Eliminate each med one at a time for a day or two (or more if necessary) to see if that helps, but do ask your doc for advice first. Cutting off meds can be dangerous. Bye, Alex

 

[Crux]

Hi Ivana;
It's only recently that I realized that it could be excess copper that's been causing so many problems. I also have a long history of migraines, vomiting,etc.

For now, I'm even a bit afraid of chocolate.... 1 oz. or 28 grams, ( I'm from the US), contains 1/2 the RDA of copper. So I guess my strong negative reaction to it was because of that. ( One of my side-effects was flatulence that could even send dogs running away.)

Maybe in the future I'll try it, but I'll have to be away from people, surely.

But now that I'm taking zinc daily, I'm feeling so much better. I believe I've had zinc deficiency probably from birth. It helps balance copper when taken in good measure. Both zinc and copper are vital, but it's easier to have too much copper over zinc.

I'm also eating foods with higher zinc; beef and lamb...this news coming from an ex-vegetarian. There's still so much left to learn.

 

[Ivana]

hi crux.. Omg my copper levels are high, as revealed by my latest test results.. Ill try more zinc.. Thanks for that! Ps. Excuse the bad grammar, i'm using my phone as i'm too tired to use the comp

 

[taniaaust1]

Omg my copper levels are high, as revealed by my latest test results

See if you can find out your levels of the essential trace mineral molybdenum.... as molybdenum helps body with certain detox processes and if low.. high copper can result.

(I use a supplement called molyzinc (molybdenum and zinc) due to low molybdenum and my hair tests also show very high copper. This supplement has been helpful for me.

 

[rlc]

hi crux.. Omg my copper levels are high, as revealed by my latest test results.. Ill try more zinc.. Thanks for that! Ps. Excuse the bad grammar, i'm using my phone as i'm too tired to use the comp

Hi Ivana, what kind of test did you have that showed high copper was it a standard medical test like serum copper test etc???

All the best

 

[Ivana]

Tania- thank you for that, I'll have the test done.

rlc- it was a blood test which KDM did, it's under the 'Toxicology' section so maybe that's the test which checks it? It was just from a standard blood test, no special serum test... I hope that helps!!

 

[Anne P]

Hi all,

I was just wondering if anyone may know which of the following meds may be making me crazy.. Since I've started them, I've been experiencing really bad cytokine storms, which usually last 18+ hours, and ofcourse, as a result, the depression is sooo bad that I'm starting to worry myself.
I'm taking Inderal (beta blocker), florinef (fludrocortisone), slow k (this makes me feel sick), fluconazole, Nexavir injections, Zoloft, Rivotril, antioxidants, Glutamine and I've just finished a course of anti-biotics.

I honestly feel like I'm going insane most days, and when the cytokine storm hits, it's game over. I'm scared my doctor will want to put me in a hospital for depression, but they won't understand M.E and will dismiss it. I'm also seeing a psychologist and I'm generally ok when the symptoms aren't so bad (freezing cold, extreme weakness, migraines, nausea, vomiting etc) but when they hit, I feel like I'm going crazy. I am largely housebound.

Any help would be appreciated.

Best wishes,

Ivana

i know what u mean, crux.. Its soo hard without it.. Sometimes i slip up and have aa bit coz the craving is so bad.. U can try mixing rice milk with stevia, cocoa and cinammon and it tastes just like chocolate pudding.. Its the closest sugar free thing ive managed to come up with.. If ur in australia u can also buy something from woolworths called i'm sweet enough by sweet william.. Its sugar and lactose free chocolate.. Although nothing can replace kinder chocolatess (i had a few buenos the other day)

 

[Anne P]

Hi Ivana

Glutamine and chocolate are both extremely high in a natural chemical called 'amines' and cause huge cytokine storms for me. Glutamine is incredibly toxic for me and many with ME/CFS. Chocolate takes a couple of days to have a bad effect but the migraines, depression pain nausea are so extreme that I have no desire for chocolate any more. Hope this helps.

Anne

 

[hurtingallthetimet]

hello i dont know what cytokine is...but if your getting worse after taking something you should talk to doctor to change it...

i am like alot very sensitive to alot of medications, alot of side effects etc...one was the worse cant remember what it was it was suppose to help with depression social anxietys but i ended up in er two days in a row...

side effects can be terrible hope your doctor can help

 

[Ivana]

Hi Ivana

Glutamine and chocolate are both extremely high in a natural chemical called 'amines' and cause huge cytokine storms for me. Glutamine is incredibly toxic for me and many with ME/CFS. Chocolate takes a couple of days to have a bad effect but the migraines, depression pain nausea are so extreme that I have no desire for chocolate any more. Hope this helps.

Anne

Hi Anne,

You mentioned glutamine is bad for u, did u mean glutamate by any chance? My cfs doc gave me glutamine l supplements as he says they're meant to be good for the digestive system and healing the gut.. a lot of literature backs this up but now i'm a bit unsure after you mentioned glutamine. Hmmm, I wonder why I was prescribed that.

 

[Sushi]

Hi Anne,

You mentioned glutamine is bad for u, did u mean glutamate by any chance? My cfs doc gave me glutamine l supplements as he says they're meant to be good for the digestive system and healing the gut.. a lot of literature backs this up but now i'm a bit unsure after you mentioned glutamine. Hmmm, I wonder why I was prescribed that.

Glutamine is often prescribed for leaking gut, but for some it seems to morph into glutamate.

Sushi

 

[Ivana]

Hi Sushi

I've got leaky gut so it was prescribed for me. How does it morph into glutamate?

Ivana

 

[rlc]

Hi Ivana, the serum copper test is the standard test that they do for copper so it was probably that one. Don’t know what testing you have had done, but it is a test result that must be followed up on if it hasn’t been already, having high results on this test means you can have anyone of the illnesses listed here http://en.diagnosispro.com/differential_diagnosis-for/copper-serum-lab-increased/11099-154.html Some of them have symptoms very similar to ME and some are very rare and most doctor’s don’t know about them, like Wilson’s disease.

The body controls levels of minerals very well, and generally stops absorbing them if too much is ingested in healthy people. So it is very unlikely that your high copper levels are from eating too much chocolate, the test implies that something else is going on. So it is important that the copper result gets followed up on and other possible causes are investigated. Hope you’re starting to feel a bit better with being of the meds.

All the best

 

[Anne P]

Hi Anne,

You mentioned glutamine is bad for u, did u mean glutamate by any chance? My cfs doc gave me glutamine l supplements as he says they're meant to be good for the digestive system and healing the gut.. a lot of literature backs this up but now i'm a bit unsure after you mentioned glutamine. Hmmm, I wonder why I was prescribed that.

 

[Anne P]

Glutamine is probably fine for those who are not sensitive to amines. I took glutamine and it made me sick. The natural and added chemicals in food such amines, salycilates, bezoates etc: can make sensitive people intolerably ill. See www.fedup.com.au. Hope you find what is making you react Ivana
.

 

[TCP36]

I wish I'd read this a couple of weeks ago. I have recently modified my diet and started to take a protein shake full of amino acids mainly glutamine. I drank it for four days and my IBS started to flare. I felt unwell so stopped taking it. I am now suffering from severe nerve pain all over and my gut and back are very uncomfortable. I realise that this has been the cause and I wish I had never tried it.