Antibiotic's - A Blessing and a Curse ?

[rosie26]

My feeling is that antibiotic's play a role in setting up the perfect conditions to contract ME in future years and perhaps other illnesses as well.

Wrong doses or incorrect antibiotic for the infection targeted, I believe can change the microbiota of the mucus membranes in localized areas throughout the body ( sinuses, lungs, gut, genital tract, bladder ). Causing inflammation that does not go away. The immune system is then constantly activated.

Over years the continual immune activation causes generalized inflammation throughout the body, weakening it so much that major dysregulation occurs and perhaps according to one's genetic makeup the pathway is set for auto immune illnesses.

Do you think antibiotic's to treat an infection is the beginning cause that started the ball rolling with your ME ? Did you notice a significant change in your body after a treatment of antibiotic's leaving you with an inflammation ?
I would be interested to know if others also think antibiotic's are a culprit in the early set up of this illness before onset ME occurred.

 

[minkeygirl]

In my case no. Mine was a perfect storm of cortef and a virus. I did not take ABX at that time.

 

[Gingergrrl]

@rosie26 Absolutely 100% in my case. I had a severe neurotoxic reaction to the antibiotic Levaquin that both injured the tendon in my arm and caused a systemic toxicity which I was hospitalized for. It took me a year and a half to fully recover including six months of physical therapy for my arm and my body was never the same.

Unfortunately exactly two years after my Levaquin disaster, I got a severe case of mono from EBV. This was the true cause but the effects were cumulative and it started a cascade that I have not been able to recover from. I wonder if I had not first had the Levaquin reaction, if I would never have gotten mono/EBV or if I would have been able to recover from it without going on to develop ME/CFS.

 

[Little Bluestem]

I have been prone to rebound infections after taking antibiotics all of my like. The rebound infection following the 'really nasty flu' was devastating. I sometimes wonder if could have avoided it, I might have avoided the ME.

 

[Hanna]

I do not know for sure. But prior to sudden onset of M.E , I had several courses of Flagyl for amybiasis, first course beeing 01/1997 - onset of M.E 06/1998. Can't speak about causality though.

 

[rosie26]

@rosie26 Absolutely 100% in my case. I had a severe neurotoxic reaction to the antibiotic Levaquin that both injured the tendon in my arm and caused a systemic toxicity which I was hospitalized for. It took me a year and a half to fully recover including six months of physical therapy for my arm and my body was never the same.

Unfortunately exactly two years after my Levaquin disaster, I got a severe case of mono from EBV. This was the true cause but the effects were cumulative and it started a cascade that I have not been able to recover from. I wonder if I had not first had the Levaquin reaction, if I would never have gotten mono/EBV or if I would have been able to recover from it without going on to develop ME/CFS.

Thanks Gingergrrl. Interesting to hear your experience. You must have felt absolutely awful with systemic toxicity.
I was never the same either after my experience with an antibiotic when I was 20 years old. My health seemed to slowly go downhill from there. I was a very healthy person and no reason to fall sick at a young age. It was a nasty flu that was the last straw for me years later.

The distance between the cause and then trigger onset into ME varies in us all - I guess depending on many other factors. I really don't think I would have got ME if I hadn't of had that antibiotic episode. Something major happened there that has undone my health.

 

[rosie26]

I have been prone to rebound infections after taking antibiotics all of my like. The rebound infection following the 'really nasty flu' was devastating. I sometimes wonder if could have avoided it, I might have avoided the ME.

Me too with rebound infection.

 

[rosie26]

I do not know for sure. But prior to sudden onset of M.E , I had several courses of Flagyl for amybiasis, first course beeing 01/1997 - onset of M.E 06/1998. Can't speak about causality though.

Thanks for your comments Hanna.

 

[Iquitos]

I don't think so, but who knows?

I do know that when I tried the Marshall protocol, using pulsed antibiotics, it eliminated my back pain, but didn't do a thing for the exhaustion and that's why I quit it. Then I moved to Central America and began taking doxycyline as a prophylaxis against maleria and I found it also lowered my back pain. At times I've stopped the doxy, either because I was out of it, or I wanted to see if it really made any difference, and I've found that back pain and muscle spasms increase when I'm not taking it. But that's just one type of antibiotic and there are several types so this might not apply to all types.

 

[maryb]

@Iquitos
I just read on Dr Myhill's page about some research on lower back pain and infections. If you search on 'chronic infection' it should bring up the page. Very interesting given your response to antibiotics and a decrease in pain.
I am currently in a great deal of pain with my back so it definitely gave me food for thought.
The antibiotic used was amoxiclav. (Augmentin)

http://www.ncbi.nlm.nih.gov/pubmed/23404353

just got the link if anyone interested.

 

[minkeygirl]

@maryb Interesting about the Augmentin since that is the ABX of choice for sinus infections.

 

[Gingergrrl]

Thanks Gingergrrl. Interesting to hear your experience. You must have felt absolutely awful with systemic toxicity.
I was never the same either after my experience with an antibiotic when I was 20 years old. My health seemed to slowly go downhill from there. I was a very healthy person and no reason to fall sick at a young age. It was a nasty flu that was the last straw for me years later.

The distance between the cause and then trigger onset into ME varies in us all - I guess depending on many other factors. I really don't think I would have got ME if I hadn't of had that antibiotic episode. Something major happened there that has undone my health.

@rosie26 I am extremely cautious and fearful of antibiotics after what happened to me with Levaquin but I also know that most antibiotics in other classes (not fluoroquinolones) do not cause that kind of systemic toxicity and tendon damage/ruptures. For me, Levaquin was the moment that my health changed and I truly regret taking it but I know that antibiotics can be life saving so I try to keep an open mind that others have not had my experience (but still try to warn others re: quinolones.)

 

[rosie26]

@Iquitos @maryb that was interesting about back pain and antibiotic's - ugh I have been getting lower back pain this year. Just have to figure out what is causing it - I do have a disc problem that keeps catching I think. But two other things possibly causing back pain too.

 

[Iquitos]

For me, the vagus nerve theory of causation works for me. Thread elsewhere here on PR. The infection can be anything from bacteria to virus to parasite.

 

[rosie26]

For me, the vagus nerve theory of causation works for me. Thread elsewhere here on PR. The infection can be anything from bacteria to virus to parasite.

Thanks Iquitos. I am interested in hearing everyone's theories. The more the better as far as I am concerned. I appreciate the time people take to say what they think may be involved. I think the bacteria one is another one for me as well. Bacteria + antibiotic's seems more likely in my case. But ultimately as you say 'who knows'.

I hope we get to the cause/s one day but I know the researchers have to work backward first.

 

[rosie26]

@rosie26 I am extremely cautious and fearful of antibiotics after what happened to me with Levaquin but I also know that most antibiotics in other classes (not fluoroquinolones) do not cause that kind of systemic toxicity and tendon damage/ruptures. For me, Levaquin was the moment that my health changed and I truly regret taking it but I know that antibiotics can be life saving so I try to keep an open mind that others have not had my experience (but still try to warn others re: quinolones.)

I know what you mean Gingergrrl. Even though I think antibiotic's were part of my beginning cause I still take antibiotic's when I need them I think we are so fortunate to have antibiotic's and they have saved me a lot of horrid pain many times. I don't know whether I have ever taken quinolones. I will have to find out all the names of them.

 

[Gingergrrl]

@rosie26 The main ones prescribed today in the U.S. are Levaquin, Cipro, Floxin, and Avelox. I would avoid those at all cost but please google so you are not just taking my word for it.

 

[rosie26]

Bacteria ... antibiotic's ... auto-inflammatory or autoimmune ... flu ... ME. I think that's me. Could be wrong though

 

[melamine]

http://well.blogs.nytimes.com/2012/09/10/popular-antibiotics-may-carry-serious-side-effects/?_r=2

Read through the responses to this article and you will feel like you're on PR. I am very curious to know what other peoples experiences with antibiotics of all classes has been. Significantly, the delayed effects are often not associated with the antibiotics that were taken weeks ago. Another important aspect is that doctors are unaware of the extent of risk and damage and will most often downplay the former and deny, deny, deny the latter. A black box warning now on fluoroquinolones is some insurance but not enough.

I have never been prescribed fluoroquinolones and yet I am experiencing the same pathological pattern of symptoms following the use of Amoxicillin, or Amoxicillin primarily, often, but not always, in conjunction with a pain killer, and often dental anesthetic as well, but not always. My impression is that the semi- and permanent post-effects have been more neurotoxic when a combination of drugs was involved, but my memory is not good enough to say for sure. This is not mere speculation that we are all prone to: I can trace new symptoms directly back to more than a few instances of taking antibiotics, most recently this past year. The link has been undeniable but complicated by symptoms that no longer follow a reasonable cause and effect pattern of expression.

It is my understanding that Amoxacillin would not be expected to cause the same widespread cellular toxicity as the fluoros because it does not contain BBB-penetrating fluoride. But the harm of fluoroquinolones is potentiated by other toxic drugs or substances in the body, and I believe the same is true with Amoxacillin and possibly other abx.

Because of my identical health-destroying pattern of symptoms vis-a-vis another class of antibiotic, it would be tempting to think a permanently altered microbiome is the culprit. Maybe it's a combination of things. My nervous system has become seemingly, irreparably sensitized, and the effects have been more than cumulative: there seem to be other factors that have joined the party: infections, other toxins probably, mast cell activation, an ever more burdened immune system...

 

[Iquitos]

I have been taking 100 mg doxycycline twice a day for over 6 years. I began taking it as a prophylactic against malaria when I went to live in a country where malaria is a big problem. I have never, as far as I know, suffered any bad side affects.

I have been taking 800 mg acyclovir twice a day for several years and it helped me so much that I will keep taking it all my life if I have to.

At one point I couldn't walk without hanging on to the walls, furniture or a caregiver. When I started the acyclovir I had a severe reaction to having done that. I spiked a fever of 104F and had the worst headache of my life. But after halving the dosage and keeping a bag of ice and water on my head for a couple of days, I slowly got better. I lot better. I slowly increased the dosage. It took about 6 weeks to see the beginning of improvement and by 6 months I could again walk normally. I got liver and kidney function tests for the first year but I don't any more because those tests never showed a problem.

I consider these drugs to be a substitute for a dysfunctional immune system. I used to get pneumonia two or three times a year. I haven't had that since I began the antiviral.

These are not the only treatments I use but they are crucial, I believe.