Intolerance to meds since CFS?

[Ocean]

I've noticed since my CFS has gotten bad, my ability to tolerate medicines and even supplements is awful. I've had some pretty bad reactions including a very bad antibiotic reaction tonight that was quite scary. I'm scared that the infection I have will end up needing one of the antibiotics I've had a reaction to in order to be cured, then what will I do? So far one antibiotic I can tolerate has not worked on the infection and there are several I've had reactions to in the past so they have not tried them on me this time.

I'm the same way with most sleep meds, with antidepressant (that doctors are always trying to give for every kind of problem, never depression in my case) and other medicines. I notice with supplements that if I take one, right away I end up having symptoms of low levels of some other vitamin that competes with the one I'm taking, so I've mostly just given up on them all except for a multivitamin. Even vitamin D I have major problems with.


How do others deal with this issue if you have it? It's hard not being able to tolerate meds and reacting to everything, especially when it's less of an optional thing and you really just have to have medicine, like when you have an infection.

Also, some people here mention oxidative stress and gluthatione (spelling?) a lot (I admit I still don't understand and have no clue what these things are). Based on what I read after my bad medicine reaction tonight, I see that some med reaction can be related to that so I wonder if having CFS, that has something to do with how I react to some meds?

ETA: I also saw electrolyte issues or low B vitamins can affect some antibiotic reactions. I'm not sure if these may also be CFS related issues I might have. It's also a shame doctors mostly know nothing about CFS and how debilitating it is so they rarely seem to understand that the things they think are fine and will have no side effects may not be that way for a person whose body is already under severe phsycial stress and CFS related problems.

 

[u&iraok]

I didn't tolerate meds before I got CFS so I haven't taken them since I've gotten CFS because I think it would be worse. Advil used to make me feel bad. I have MCS, too.

 

[Ocean]

I didn't tolerate meds before I got CFS so I haven't taken them since I've gotten CFS because I think it would be worse. Advil used to make me feel bad. I have MCS, too.

I've kind of been that way most or all of my life too. I always get the supposedly rare side effects of any medicine or procedure it seems. I've always had a sensitive body, but it seems much worse these days. What do you do if you get an infection though? Or have you not had to deal with that since you've had CFS?

 

[xrunner]

In the past I experienced problems with some medications and supplements. I was also on antibiotics and at some point I could not tolerate those any longer. It became so bad I ended up in casualty a couple of times. I then was advised to see an autonomic consultant which I did and he explained that such reactivity was due to the immune system which impacts the autonomic nervous system. I don't understand how that interacts with the autonomic nervous system which generates the symptoms. I was advised to have low-dose immunotherapy to desensitise my system but it made it worse. I subsequently tried Naet which helped me overcome those sensitivities.

 

[richvank]

Hi, Ocean (and the group).

Drugs are viewed as toxins by the body, and are eliminated from the body by the detoxication system, operating primarily in the gut and the liver, but also in the kidneys, lungs and other organs.

Drug sensitivity prior to developing ME/CFS is likely due to inherited genetic polymorphisms in the Phase I detox genes (which code for the cytochrome P450 enzymes). The Genovations Detoxigenomic Profile characterizes polymorphisms in eight of these genes, including the ones most important for detox of drugs.

After the onset of ME/CFS, drug sensitivities often become more severe, because the partial block in the methylation cycle and the depletion of glutathione impact the detox system in major ways. The detox system depends a lot on the sulfur metabolism in general, and this becomes dysfunctional in ME/CFS.

When the detox system is not operating well, a standard dose of a drug will often cause the concentration of the drug to rise higher in the body, and to remain longer. Thus, if a standard dosing schedule is also used (which is based on assuming that the detox system will break down and excrete the drug at a usual rate) the doses will pile on top of each other, and raise the concentration even higher.

Generally speaking drugs are not very helpful in ME/CFS, though there are exceptions. It is more helpful to address the partial methylation cycle block, which in most cases will cause glutathione to come back up to normal and will restore the operation of the body's detox and immune systems, as well as other dysfunctional organs and systems. For more information, see the video and/or slides here:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

Best regards,

Rich

 

[ukxmrv]

I didn't have very much experience with drugs pre-ME as I was a very healthy child and teenager. However, when ME struck (acute onset) I had bad reactions to AB's, AD and many of the other things my doctor tried to treat symptoms with. It wasn't just drugs I developed food allergies, asthma and hayfever. Ended up with analpexic shock after eating prawns.

What I try to do is find natural alternatives to do the same thing that the conventional drugs should so. For example I had a chronic sinus infection and the ENT prescribed AB's which caused breathing problems and chest pain. I instead bought an Irrigator to use warm water, salt and tea-tree to wash out my sinus area.

Obviously there are not always natural workable alternatives so symptoms can go untreated for years until I either find a drugs that works without making things worse or find some other way of addressing the problem.

 

[Tristen]

No problems with any medications, supplements, nothing before me/cfs. After onset had severe intolerance's. This is very common for us. My med intolerance problem improved with the Simplified Protocol.

Hey Rich, I was on the protocol for 1.5 years and made significant improvements. At around that 1.5 year mark I plateaued and felt a break would be good. Now, I'm wondering if that was the best idea. I wanted to ask if you have like a general tx duration idea for the Simplified Protocol?

 

[richvank]

No problems with any medications, supplements, nothing before me/cfs. After onset had severe intolerance's. This is very common for us. My med intolerance problem improved with the Simplified Protocol.

Hey Rich, I was on the protocol for 1.5 years and made significant improvements. At around that 1.5 year mark I plateaued and felt a break would be good. Now, I'm wondering if that was the best idea. I wanted to ask if you have like a general tx duration idea for the Simplified Protocol?

Hi, Tristen.

I don't have controlled and tested clinical data beyond 9 months, and some of the people were still improving then. That's really all I can say about treatment duration, I think. If no more improvement is experienced after a year or so, I think other factors have to be looked at, including toxins and pathogens. They are probably what is holding up progress. Ritchie Shoemaker emphasizes that many patients have biotoxins from water-damaged buildings and don't realize it. High body burdens of toxic metals such as mercury are present in many cases. Lyme disease and coinfections have been present in many cases, too. The new work with nagalase and MAF suggests that there can be viral infections that are hiding from the immune system. I think these are the kinds of things that should be checked out. I still believe that the methylation cycle partial block is the core of the pathophysiology, but toxins and pathogens could be what brought it on, and could also have accumulated after this partial block became established, because it would lead to dysfunction of both the immune system and the body's normal detoxication system.

Best regards,

Rich

 

[Ocean]

Thanks everyone. I have tried natural things for my infection with no luck so far. I'll keep my fingers crossed that my third try at an antibiotic will do the job, until I have time to look into and possibly implement the advice above so hopefully I'll become less sensitive. CFS makes so many things so much more difficult!

 

[taniaaust1]

Do you mind saying what kind of infection it is? as I may be able to suggest something better then antibiodies depending on what you have wrong.
....

You can try olive leaf extract if you havent already done so (its antibacterial, antifungal and antiviral), it wont work immediately, just like antibiotics dont work immediately).

Also make sure you are taking plenty of vitamin C (if you are able) very regularly while you have an infection (several times a day or more.. with bioflavenoids to help absorption of it).

 

[u&iraok]

I've kind of been that way most or all of my life too. I always get the supposedly rare side effects of any medicine or procedure it seems. I've always had a sensitive body, but it seems much worse these days. What do you do if you get an infection though? Or have you not had to deal with that since you've had CFS?

I haven't had a serious infection bad enough requiring me to take antibiotics or medication. For regular infections I take natural things like oregano, collodial silver, olive leaf, mushrooms, grapefruit seed extract, etc. and high amounts of Vitamins A, C, D, Zinc. I also took MMS and that helped a lot.

 

[SueJohnPat]

I have not had any bad reactions to drugs at all with the exception of alcohol. Could not toe rate when a was moderately I'll. I guess I am in the minority.

 

[Hope78]

The medication intolerance preceded my cfs. Some years before it all begun I noticed I didnt tolerate the medication I was able to use all the time. Then histamine intolerance, alcohol intolerance and so on. I didnt have a sudden onset, it was more gradual. But I suffer constant insomnia & pain and being not able to tolerate my former medication is a nightmare.
By the way: my glutathione levels are fine, so for me that's not the cause

 

[cfs6691]

The medication intolerance preceded my cfs. Some years before it all begun I noticed I didnt tolerate the medication I was able to use all the time. Then histamine intolerance, alcohol intolerance and so on. I didnt have a sudden onset, it was more gradual. But I suffer constant insomnia & pain and being not able to tolerate my former medication is a nightmare.
By the way: my glutathione levels are fine, so for me that's not the cause

I had a severe reaction to antibiotics years before getting CFS and I suspect that my CFS is cholestatic liver damage caused by contraceptic steroids the symptoms of which can be mild:nausea,anorexia,malaise.The onset was gradual in my case too.Except for medication are you intolerant to other chemicals such as additives to foods(even meat and fish can contain chemicals without a label)?Do you have symptoms like nausea or irritation,pain,burning sensation in the right side of your belly?I can send you quotes from medical journals regarding the unreliability of blood liver function tests but since there is no alternative test doctors will not consider liver disease unless you can get a liver biopsy which is an invasive procedure.I get some relief for some of my symptoms with licorice root infusion and aloe vera gel.Maybe you can check and let me know if you get some relief too.