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my body is not handling the treatment well

patient.journey

Senior Member
Messages
443
guys my body cant handle most of the antibiotics now or antivirals , even some kind of probiotics !!
when i eat them my body hurts every were , maybe more before i started !! i didn't have this before ! at least not this much and fast !!

my LFT - RFT - CBC -ESR - CRP - urine analysis - stool analysis are fine i did the chick to make sure if any of those parts got any kind of trouble in function causing the pain ..

any one had this before ??
 

patient.journey

Senior Member
Messages
443
Can you say more about why you are taking them?

its been a long time ..

i take them rarely if thy are prescribed for me from a doctor for bronchitis or sinuses and the antiviral was Zovirax when i had rash and blisters and the doctor thought it was Varicella zoster and he started me and my test came back negative during taking them !!

i cant handle a number of antibiotics i used before like levofloxacin and flagyl as an example so what is happening do you think ?
 

Hip

Senior Member
Messages
17,824
Some antibiotics like levofloxacin are associated with causing mitochondrial damage, see this thread:

Drugs Linked To Mitochondrial Toxicity (Eg: Amitriptyline, Prozac, Xanax, Tetracycline, Metformin)

Fluoroquinolones like levofloxacin are also known to cause fluoroquinolone toxicity syndrome, an FDA-recognized condition (possibly linked to mitochondria toxicity).


There have been a few accounts of ozone therapy leading to recovery from fluoroquinolone toxicity syndrome (FTS). See here:

Bill’s Recovery Story – Avelox Toxicity

Ricardo’s Story – Recovery from Ciprofloxacin Toxicity

I think the treatments were by ozone autohemotherapy, which requires a doctor to do.

It's possible that the easy ozone application technique that I devised (see this post), which costs very little and can be done at home might be a good substitute for ozone autohemotherapy, but I am not sure.



It's not uncommon for ME/CFS patients to react badly to Flagyl (metronidazole) it seems: flagyl=crap.

It may be an idea to keep track of which antibiotics you can handle OK, and which you react badly to, so that next time you need them, you can ask your doctor to avoid the bad ones.
 
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patient.journey

Senior Member
Messages
443
Some antibiotics like levofloxacin are associated with causing mitochondrial damage, see this thread:

Drugs Linked To Mitochondrial Toxicity (Eg: Amitriptyline, Prozac, Xanax, Tetracycline, Metformin)

Fluoroquinolones like levofloxacin are also known to cause fluoroquinolone toxicity syndrome, an FDA-recognized condition (possibly linked to mitochondria toxicity).

It's not uncommon for ME/CFS patients to react badly to Flagyl (metronidazole) it seems: flagyl=crap.

It may be an idea to keep track of which antibiotics you can handle OK, and which you react badly to, so that next time you need them, you can ask your doctor to avoid the bad ones.

dear hip i know that about some antibiotics the thing is i used to handle some of them but now i cant !! did any one had that before this change is antibiotics and some antivirals ???

i have nerve problems since a while and am using Lyrica the only treatment for that , the cause is unknown- my MRI For brain and spinal are good while i have pains in head- neck and other parts of my nerves system - i have chronic Lymphadenopathy since one year with other symptoms that i had in the beginning of my illness and life is becoming hard ,tomorrow i will have CT scan for my hall body starting from neck down to legs hopefully things would be fine ..
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
i know that about some antibiotics the thing is i used to handle some of them but now i cant !! did any one had that before this change is antibiotics and some antivirals ???
Many of these are not meant to be taken long-term. Maybe you don't need them anymore and they are causing problems for you?
 

Hip

Senior Member
Messages
17,824
dear hip i know that about some antibiotics the thing is i used to handle some of them but now i cant !! did any one had that before this change is antibiotics and some antivirals ???

I have not had this experience with antibiotics and antivirals, but I know that my ability to handle certain psychiatric drugs like antidepressants has changed since I developed ME/CFS. Drugs that I had no problem in handling before I got ME/CFS suddenly started causing major mental side effects.

And even through the course of my ME/CFS illness (which I have had for around 10 years), the effects of psychiatric drugs have on me have changed over the years, so that a drug that was effective before may no longer be effective now.
 

patient.journey

Senior Member
Messages
443
Many of these are not meant to be taken long-term. Maybe you don't need them anymore and they are causing problems for you?

yes they do ,, a lot of medication is causing problems for me even some probiotics from GNC do !! i never had this before i even had long term course with valcyte once -and moxofloxain too and every thing was fine , and am afraid that some kind of damage have been happen to my body that wont make me able to take some kind of treatment that i should take any more !!

my body chemicals are fine , just renewed my tests and they are very good but this feeling like a poison and pain everywhere in the body with many of those medicine that i take is getting me crazy !!

between pain and me not having the ability to take a lot of treatment , i need a help i need some one to tell me if this happened to any one else or not and why could this be ??
 

Hip

Senior Member
Messages
17,824
a lot of medication is causing problems for me even some probiotics from GNC do !!

Some ME/CFS patient develop multiple chemical sensitivity (MCS), mast cell activation syndrome (MCAS), or allergies, all of which can make them intolerant or sensitive to drugs, supplements, foods and even chemicals in the air.

If you search this forum MCAS, you will see the sort of problems that patients with MCAS experience. MCAS can be treated so some extent with drugs like antihistamines, and mast cell stabilizer drugs.


As far as probiotics are concerned, a lot ME/CFS patients are initially able to tolerate these (and benefit from them) in the first few years of their illness, but then for some reason their body changes, and they can no longer tolerate probiotics (they may cause stomach pain and stomach bloating).
 
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rosie26

Senior Member
Messages
2,446
Location
NZ
@Omar88 There has been a change for me too. When I had a UTI a few years ago the antibiotics wiped me out - lots of heavy malaise. Normally antibiotics make me feel better and I can't remember ever having that heavy kind of malaise with antibiotics.

Then two years ago I became very ill after finishing a week on an antibiotic - major problems with my lungs, one lung hyper-inflated. The A & E doctor prescribed another antibiotic and down I went again but this time it was hideous in another way - I not only had the malaise but I had suicidal idealization for two days. I only recently realized that it was the antibiotic after reading of another member experiencing the same thing. I thought it was the illness. I think I was hallucinating at the time also. There were a few things that happened that didn't make any sense at all.

So you are not the only one. I have to be extra careful now.
 

patient.journey

Senior Member
Messages
443
@Omar88 There has been a change for me too. When I had a UTI a few years ago the antibiotics wiped me out - lots of heavy malaise. Normally antibiotics make me feel better and I can't remember ever having that heavy kind of malaise with antibiotics.

Then two years ago I became very ill after finishing a week on an antibiotic - major problems with my lungs, one lung hyper-inflated. The A & E doctor prescribed another antibiotic and down I went again but this time it was hideous in another way - I not only had the malaise but I had suicidal idealization for two days. I only recently realized that it was the antibiotic after reading of another member experiencing the same thing. I thought it was the illness. I think I was hallucinating at the time also. There were a few things that happened that didn't make any sense at all.

So you are not the only one. I have to be extra careful now.


hi rosie

what did your doctor think ? and what was the symptoms you had and was there anything that helped ?
 

patient.journey

Senior Member
Messages
443
Some ME/CFS patient develop multiple chemical sensitivity (MCS), mast cell activation syndrome (MCAS), or allergies, all of which can make them intolerant or sensitive to drugs, supplements, foods and even chemicals in the air.

If you search this forum MCAS, you will see the sort of problems that patients with MCAS experience. MCAS can be treated so some extent with drugs like antihistamines, and mast cell stabilizer drugs.


As far as probiotics are concerned, a lot ME/CFS patients are initially able to tolerate these (and benefit from them) in the first few years of their illness, but then for some reason their body changes, and they can no longer tolerate probiotics (they may cause stomach pain and stomach bloating).

i did read about them but mast cell activation syndrome get better with antibiotics said in some forums and the other one have no link to antibiotics
 

rosie26

Senior Member
Messages
2,446
Location
NZ
hi rosie

what did your doctor think ? and what was the symptoms you had and was there anything that helped ?
My reaction to the antibiotic that caused my lung to hyper-inflate has been recorded in my notes - doctor doesn't understand why that happened. I think I have just become very sensitive, unfortunately.

Hoping the cure for ME isn't long-term antibiotics now (for me, personally). A cure would be great but it could near kill me in the process. I think it is too late going the antibiotic route for me now. I think I need more a immune system regulator, reset.

I never mentioned to my doctor about the third episode - I was so exhausted for so many months I let it go.

My symptoms were; heavy malaise, felt like I was being over-sterilized, thrush in mouth and even felt like it was in my lungs as well. And I had the suicidal idealization and hallucinations with the third lot of antibiotics. I will come back to this post and add the name of the antibiotics I took later.

Edit: I had to change 'second' to 'third' in the third paragraph.
 
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patient.journey

Senior Member
Messages
443
My reaction to the antibiotic that caused my lung to hyper-inflate has been recorded in my notes - doctor doesn't understand why that happened. I think I have just become very sensitive, unfortunately.

Hoping the cure for ME isn't long-term antibiotics now (for me, personally). A cure would be great but it could near kill me in the process. I think it is too late going the antibiotic route for me now. I think I need more a immune system regulator, reset.

I never mentioned to my doctor about the second episode - I was so exhausted for so many months I let it go.

My symptoms were; heavy malaise, felt like I was being over-sterilized, thrush in mouth and even felt like it was in my lungs as well. And I had the suicidal idealization and hallucinations with the third lot of antibiotics. I will come back to this post and add the name of the antibiotics I took later.

got the same feeling for the long term antibiotics , some friend here sent me ( mitochondrial damage ) might be the cause and it look near to it but not sure ! i will try to start Q10 by tomorrow as they say it help
 

patient.journey

Senior Member
Messages
443
today i had to stop probiotics i started to feel body-bone-nerve pains every, lymph node are swollen , headache and fatigue are worse too - and gastric symptoms are going crazy - same symptoms when am on antibiotics !!!!

guys please any ideas what is happening ?? :cry::cry:
 

rosie26

Senior Member
Messages
2,446
Location
NZ
today i had to stop probiotics i started to feel body-bone-nerve pains every, lymph node are swollen , headache and fatigue are worse too - and gastric symptoms are going crazy - same symptoms when am on antibiotics !!!!

guys please any ideas what is happening ?? :cry::cry:
:hug:

I don't know your history of ME @Omar88 It sounds like a severe flare up. Have you had it this severe before? Take some painkillers for the headache if your not sensitive to them, rest for the fatigue and to ease all symptoms. Plenty of fluid, soups. Vitamin C in the way of vegetables, bit of fruit or little fruit juice if you can tolerate it.

I hope I am not giving advice, these are just some of what I do when really sick.

I don't know anything about Lyrica, which I see you are taking. Could it be causing you more problems symptom wise?

Please see a doctor if it feels like an emergency.
 
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patient.journey

Senior Member
Messages
443
:hug:

I don't know your history of ME @Omar88 It sounds like a severe flare up. Have you had it this severe before? Take some painkillers for the headache if your not sensitive to them, rest for the fatigue and to ease all symptoms. Plenty of fluid, soups. Vitamin C in the way of vegetables, bit of fruit or little fruit juice if you can tolerate it.

I hope I am not giving advice, these are just some of what I do when really sick.

I don't know anything about Lyrica, which I see you are taking. Could it be causing you more problems symptom wise?

Please see a doctor if it feels like an emergency.

thank you am better today , have some chest pain but everything is better , i stopped the probiotics and am only on vitamin C !!

i found that people with Lyme and other bacterial infections have bad herx even for probiotics !! i cant be sure if it is herx or something else but until i meet my doctor i will try hard to cleans