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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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My body can't tolerate any medication?

Messages
39
Hello,
Since been unwell it seems I have a terrible reaction if I try and take any kind of medication (even supplements). All my symptoms become 100% times worse and it causes terrible pain & weakness everywhere. This is proving a big problem as I can't help any of my symptoms. Just wondering if anyone has had this happen to them or they have any information about this?
Many thanks for any help ☺
 

pattismith

Senior Member
Messages
3,926
Hello,
Since been unwell it seems I have a terrible reaction if I try and take any kind of medication (even supplements). All my symptoms become 100% times worse and it causes terrible pain & weakness everywhere. This is proving a big problem as I can't help any of my symptoms. Just wondering if anyone has had this happen to them or they have any information about this?
Many thanks for any help ☺

would you explain what drug you tryed for which you had side effects?

I have a Low T3 Syndrome, and got a lot of intolerance with many drugs.
CFS/ME in general is a condition that predisposes to many side effects with drugs.
 
Messages
39
@rwac my diet is good! I generally drink water not orange juice.

The things I have tried that have given me a terrible reaction are: low dose naltroxone, anti-depressants, kefir (home grown probiotic drink), Thyroid drugs, beta blockers and lots of different supplements. The same thing happens, all my symptoms get 100 times worse and I can't get out of bed.
 

pattismith

Senior Member
Messages
3,926
@rwac my diet is good! I generally drink water not orange juice.

The things I have tried that have given me a terrible reaction are: low dose naltroxone, anti-depressants, kefir (home grown probiotic drink), Thyroid drugs, beta blockers and lots of different supplements. The same thing happens, all my symptoms get 100 times worse and I can't get out of bed.

I got awful reaction from opioids, amitriptilline, and from antibiotics.

Reactions to Kefir might be a reaction to D lactic acid, so you must keep in mind to take only probiotics that doesn't contain lactobacillus Acidophilus which is the worst.

Bifidobacterium are the one to target and to chose.

I also had bad reaction to Thyroxine, which is consistent with Deiodinases unbalance.

Do you have your thyroid panel ?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Have you looked into Mast Cell Activation Syndrome, MCAS, which half of my ME/CFS specialist's patients have?

Tests include tryptase, histamine, Chromagranin A, and prostaglandin D2.

If not, doing a DNA stool test to look at your microbiome might offer clues.
 
Messages
39
@Learner1 no I haven't had these tests! I would be interested, but is there any help/treatment or would I be still in the same position I'm in now if the results showed a problem?

Thank you @pattismith my thyroid blood tests results were actually normal. I don't have a thyroid problem. I just got really desperate as to what was wrong with me and a private doctor let me trial some thyroid drugs to see if they helped at all anyway. However they made everything much worse and didn't help.
 

pattismith

Senior Member
Messages
3,926
@Learner1 no I haven't had these tests! I would be interested, but is there any help/treatment or would I be still in the same position I'm in now if the results showed a problem?

Thank you @pattismith my thyroid blood tests results were actually normal. I don't have a thyroid problem. I just got really desperate as to what was wrong with me and a private doctor let me trial some thyroid drugs to see if they helped at all anyway. However they made everything much worse and didn't help.
my thyroid panel were fine too
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
MCAS is treatable. I have MCAS-driven reactions to corn and milk, so I have to have most meds compounded.

I take Zantac, injectible diphenhydramine, compounded fexofenadine, and quercetin, curcumin, boswellia, pantothine (B5), cassava based vitamin C, 5-MTHF, and methyl B12. They have different roles in calming mast cells. You might start with one or two, and see how you do.

Attached is some info on diagnosis, symptoms, and treatment.

Best wishes.
 

Attachments

  • Afrin Drugs for MCAS.pdf
    891 KB · Views: 11
  • Afrin 2014 Presentation of MCAS.pdf
    1.9 MB · Views: 6
  • afrin mcas disgnosis.pdf
    1.1 MB · Views: 11
Messages
66
Location
Cornwall, UK.
Hello,
Since been unwell it seems I have a terrible reaction if I try and take any kind of medication (even supplements). All my symptoms become 100% times worse and it causes terrible pain & weakness everywhere. This is proving a big problem as I can't help any of my symptoms. Just wondering if anyone has had this happen to them or they have any information about this?
Many thanks for any help ☺
Very interesting statement I also have extreme reactions to ALL tried drugs (and that's more than 30 drugs) and cheaper supplements often leaving me with discomfort and pain for days and weeks I now only use TERRA NOVA and VIRIDIAN vitamins/minerals terra nova make only organic extract vitamins which the body interprets as food. Also there are lots of foods that I can't tolerate pure orange juice, any processed foods, non organic wheat, rye, corn and soya most of them are GM and many more so I eat only organic foods and only drink bottled spring water as I have strong reaction to tap water.
Sounds like you may have multiple chemical and drug hypersensitivity like myself?
 

pamojja

Senior Member
Messages
2,378
Location
Austria
..cheaper supplements often leaving me with discomfort and pain for days and weeks I now only use TERRA NOVA and VIRIDIAN vitamins/minerals terra nova make only organic extract vitamins which the body interprets as food

Usually that is only a promotion trick to be able to sell at a higher price. Whenever one investigates 'organic extract vitamins' one find they use the same synthetically produced vitamins as all other companies. Therefore got interested to check your TerraNova brand, since you really seem to tolerate it better.

Just looking at the 2 most common supplements, vitamin C or Magnesium, I found they indeed just add the usual chemical compounds to a mix of organic powders. So the negative reaction you get from other supplements might rather come from the other additives, than the synthetically produced nutrients also found in TerraNova brand.

NO FILLERS, BINDERS OR OTHER EXCIPIENTS
SUITABLE FOR VEGETARIANS & VEGANS

NO WHEAT – NO GLUTEN – NO SOY – NO YEAST – NO DAIRY – NO GELATINE – NO ANIMAL INGREDIENTS – NO ADDITIVES – NO ADDED SUGAR – NO COLOURS – NO FLAVOURS – NO PRESERVATIVES

An other much moreeconomical way to avoid such additives is to buy nutrients as 100% pure bulk powders. By adding these to organic foods where you get the same effect to your body, as with probably very expensive TerraNova products.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I'm allergic to corn, milk, gluten, and eggs, which seem to be in most medications, including steroids, antihistamines, and other medications used for MCAS, so I have to have most medications compounded with safe ingredients.

Ascorbic acid is generally derived from corn, and after a bad case of hives from B12 shots, I learned that they use bacteria to make it and I had to learn to ask if the bacteria live in a corn medium.

And, after reacting to a magnesium glycinate supplement, I earned that most magnesium supplements have natural arsenic contamination, so I've found I have to quiz manufacturers on their testing for heavy metals.

Manufacturers I've found with high standards which generally avoid these problematic ingredients are Thorne Research, Seeking Health, and Designs for Health. High quality brands with unique products I have to ask on a case by case basis are Allergy Research, Klaire Labs, and Vital Nutrients. And I've found fruit and cassava based vitamin C.
 
Messages
66
Location
Cornwall, UK.
Usually that is only a promotion trick to be able to sell at a higher price. Whenever one investigates 'organic extract vitamins' one find they use the same synthetically produced vitamins as all other companies. Therefore got interested to check your TerraNova brand, since you really seem to tolerate it better.

Just looking at the 2 most common supplements, vitamin C or Magnesium, I found they indeed just add the usual chemical compounds to a mix of organic powders. So the negative reaction you get from other supplements might rather come from the other additives, than the synthetically produced nutrients also found in TerraNova brand.



An other much moreeconomical way to avoid such additives is to buy nutrients as 100% pure bulk powders. By adding these to organic foods where you get the same effect to your body, as with probably very expensive TerraNova products.

Yes Pamojja it appears you are correct and I have mistakenly thought that the various organic extracts in the vitamins of terra nova were totally organic but upon further reading not the case and yes I do tolerate the vitamins very well so it must be the the fact that there are NO WHEAT – NO GLUTEN – NO SOY – NO YEAST – NO DAIRY – NO GELATINE – NO ANIMAL INGREDIENTS – NO ADDITIVES – NO ADDED SUGAR – NO COLOURS – NO FLAVOURS – NO PRESERVATIVES.
Well spotted and I will move on to Thorne Research, Seeking Health, and Designs for Health products as recommended by Learner1.
Thank you.:thumbsup:
 
Messages
66
Location
Cornwall, UK.
I'm allergic to corn, milk, gluten, and eggs, which seem to be in most medications, including steroids, antihistamines, and other medications used for MCAS, so I have to have most medications compounded with safe ingredients.

Ascorbic acid is generally derived from corn, and after a bad case of hives from B12 shots, I learned that they use bacteria to make it and I had to learn to ask if the bacteria live in a corn medium.

And, after reacting to a magnesium glycinate supplement, I earned that most magnesium supplements have natural arsenic contamination, so I've found I have to quiz manufacturers on their testing for heavy metals.

Manufacturers I've found with high standards which generally avoid these problematic ingredients are Thorne Research, Seeking Health, and Designs for Health. High quality brands with unique products I have to ask on a case by case basis are Allergy Research, Klaire Labs, and Vital Nutrients. And I've found fruit and cassava based vitamin C.
Excellent news Learner1 I will now have a good look at the products Thorne Research, Seeking Health, and Designs for Health.
Thanks for that info:thumbsup:
 

Judee

Psalm 46:1-3
Messages
4,398
Location
Great Lakes
My mom and I are exactly the same.

For supplements, I try to get the most hypoallergenic as others are saying and take micro doses whenever possible, buying powder or capsules so we can take pinches of most things--first to see if we will react and later to get the right dose for us.

For medications, you could ask your doctor to advise you on taking a lower dose or see if there is a compounded version he can prescribe.
 
Messages
66
Location
Cornwall, UK.
My mom and I are exactly the same.

For supplements, I try to get the most hypoallergenic as others are saying and take micro doses whenever possible, buying powder or capsules so we can take pinches of most things--first to see if we will react and later to get the right dose for us.

For medications, you could ask your doctor to advise you on taking a lower dose or see if there is a compounded version he can prescribe.
Thank you Judee, yes hypoallergenic/natural sups is the way forward I will look into powders etc. But regarding meds they are a complete NO they make me too ill I think it's a lot to do with bulking agents and additives.
And I find it very interesting that both you and your mum have the same reactions/conditions d you have any understanding about why?
Thanks for your input :thumbsup:.
 
Messages
66
Location
Cornwall, UK.
Mast cell diseases can be genetic or they can be autoimmune.
Well that's interesting as my mother died in the 1980s after suffering with an undefined illness that kept her in bed because of malaise for most of my childhood. She died at 60 through cancer throughout her entire body she was prescribed diazepam, librium and nortriptyline and I am convinced they made her worse and the Dr's said she had physiological issues but they came after taking the drugs for 30+ years!!
 

Judee

Psalm 46:1-3
Messages
4,398
Location
Great Lakes
Sorry I've taken so long to get back and answer your question. My mom and I both have MCS (multiple chemical sensitivies) and when we did the 23andme we both show a lot of polymorphisms (if that is the correct word) in both the stage 1 and stage 2 liver detox areas so I suspect that along with some candida and metal toxicity issues may be to blame.