FQ antibiotics toxicity - a light bulb moment?

[Gingergrrl]

@slysaint I just read the study that you posted and it is by the same author, Joseph King, as the link that I posted last night. It literally shows how the FQ molecule adducts to human DNA both at the cellular and mitochondrial level. I am thinking about contacting the author and would love to have this test to know if my DNA was altered by Levaquin.

My life was forever altered on the day I took the 7th Levaquin pill and it was the first time ever took short-term disability from work (and am now five years later on permanent disability.) It took 1.5 yrs to re-gain functioning of my arm but I always felt "poisoned" which is the word that they used b/c the people who were affected were essentially poisoned. The study began in Aug 2013 (approx 3.5 years after I took Levaquin so this level of info was not known at that time.)

I have never felt that I matched the typical description of me/cfs and reading this makes so much sense to me, especially how you can develop autoimmune conditions and connective tissue diseases and even inherited genetic ones, you can get as an adult b/c of how the FQ affects your DNA. I am not sure how to pursue this other than contacting the author but he lists his e-mail and he might know how someone can get the test.

If the test proves that the FQ molecule has been added to your DNA, it seems like they have found the biomarker (for this) and game over. I don't know that there is anything that can be done! I can live with the arm pain and never having full strength on the right side of my body again but if this is behind my lung and breathing issues, then I want to know.

 

[Gingergrrl]

Alright, I need to do this. Thank you @Gingergrrl

Yes, Aaron and you definitely should as it is a solid research study and nothing like it of it's kind that I am aware of.

Can I ask, what were all your symptoms from Cipro (then and now?) Do you have a lot of autonomic problems?

I never took Cipro but took Levaquin and was severely injured on the 7th day. I never really know five years later what role it still plays b/c I have had so many other triggers (mono/EBV, severe mold exposure, etc) but it literally destroyed my health and life in an instant and I've never been back to the pre-Levaquin level of functioning and from 2013 to the present, it's been purely rapid down-hill deterioration.

 

[Gingergrrl]

Were you able to find doctors (in 2010) that believed that FQs had caused your medical condition?

There has to be a way to get the FQ out of a person's body IMO, as many people eventually recover...but how that is done is the mystery. I've read so many recovery stories, but many different methods for each individual to recover. I wish someone would get off their butt and figure out how to get the stuff out of our bodies (assuming it's still in there).

Does your right triceps tendon still bother you? My achilles still act up but with less severity.

Yes, I found many docs in 2010 who believed that Levaquin caused my injuries including the ENT who prescribed it as well as my chiropractor, my then PCP, an orthopedist who said he was willing to "Bet his career on it" b/c he had done surgeries on six prior FQ victims, etc. The only ones who did not believe were neurologists.

Whether it is causing my current medical condition, I do not know.

No one has figured out how to get it out of the body but there were some who recovered (in 2010) from glutathione which is one of the treatments I am finally doing now. You should read Dr. Jay Cohen's stuff if you have not already and I consulted with him back in 2010 and he also had no doubt that Levaquin caused my injuries.

And yes my right triceps is still very weak and painful. If I overuse it, my shoulder and neck compensate and I get severe pain on entire right side. I do not have normal grip strength and very hard for me to open a bottle of water or squeeze a shampoo bottle and require help with these tasks. Whereas I learned through six months of PT how to write with a pen again and smaller tasks.

 

[slysaint]

@Gingergrrl glad the info was useful.
I haven't read all of it thoroughly as it was a 'research session' that snow balled with one thing leading to another, then I had to go back and track down and save all the sites I'd looked at.
As I mentioned I had one week of 1000mg cipro when I was I'll with pneumonia in 2001 (the first lot of antibiotics hadnt worked). I briefly felt better but then started getting weird pains,cracking joints,twitching muscles, plus most of the things associated with ME. I was also taking a lot of ibuprofen (nsaids and corticosteroids make the impact of fx antibiotics worse). I had another round of cipro a few months later after my ME diagnosis but I was very ill at the time anyway so worsening of my symptoms wouldn't have been as noticeable. As it was years before the problem of toxicity was raised the cipro wouldn't have been even considered as a likely cause.
I haven't worked it out yet but it seems too much of a coincidence. I'd like to get tested just to know one way or the other.

 

[slysaint]

Found someone who can do the DNA adduct test in the UK
http://drmyhill.co.uk/wiki/DNA_adducts

 

[slysaint]

Turns out this is a Doctors website. But some very interesting info all the same.
The lab she uses is called Acumen and is in the UK. They also do Mitochondria testing.
The DNA adduct test is not that expensive (around £116)

 

[Gingergrrl]

I haven't worked it out yet but it seems too much of a coincidence. I'd like to get tested just to know one way or the other.

I agree it is too much of a coincidence as well. I am feeling that I would just like to know as well although it will be more information that I cannot do anything to change (unless a treatment comes out in the future for FQ toxicity/poisoning.)

Found someone who can do the DNA adduct test in the UK http://drmyhill.co.uk/wiki/DNA_adducts

Wow, that is great. I am still unclear how to get the test in the US but have not researched that part yet or contacted the author. Will probably look into this in the new year.

 

[slysaint]

Just found out that a lot of people on this forum have used this Dr Myhill.
Trying doing a search.

 

[slysaint]

Duh, theres a whole section on diagnostic guidelines...........I'm guessing that most of the research labs will do the DNA adduct test (I think they use it for some cancer patients).

 

[Gingergrrl]

Duh, theres a whole section on diagnostic guidelines...........I'm guessing that most of the research labs will do the DNA adduct test (I think they use it for some cancer patients).

@slysaint Maybe I will discuss this with you via PM some day (and several weeks behind on PM's now!) but am very interested in the info and how someone requests this test as I suspect it is very obscure. I had to do blood tests today for something much less obscure and the lab really struggled to figure it out.

 

[AaroninOregon]

Yes, Aaron and you definitely should as it is a solid research study and nothing like it of it's kind that I am aware of.

Can I ask, what were all your symptoms from Cipro (then and now?) Do you have a lot of autonomic problems?

I never took Cipro but took Levaquin and was severely injured on the 7th day. I never really know five years later what role it still plays b/c I have had so many other triggers (mono/EBV, severe mold exposure, etc) but it literally destroyed my health and life in an instant and I've never been back to the pre-Levaquin level of functioning and from 2013 to the present, it's been purely rapid down-hill deterioration.

I signed up for the study and now I wait.

March 4, 2014: The first symptom that I had was tingling/paresthesia from my waist down into my feet with the worst of it being in my lower legs and ankles. Within 2 days my ankles were so sore that I could hardly walk. Then came the bilateral achilles tendonitis. I gradually saw some improvement over a 2-month period as I began doing stretches and bought a stationary bicycle to try and stay in shape. In early May 2014 came the big crash when I went from sleeping 7-9 hours per night to not sleeping at all. Along with the insomnia came a whole cluster of symptoms: Tachycardia, anxiety, psychosis, dry mouth, fatigue, weak/shaky muscles, frequent urination, frequent bowel movements, pain in tendons throughout body, muscle fasciculations, TMJ symptoms, dry stuffy sinuses.

I was a disaster until around mid-June 2014 when my symptoms began to lessen. I thought I was out of the woods as I continued to improve during the summer of 2014. Then I overdid it on September 1, 2014 going hiking and swimming for a day and my insomnia came back followed by most of the old symptoms. None of the returning symptoms were as severe as they had originally been and they came and went until January 2015.

From early January until mid-May 2015 I saw a lot of improvement in symptoms (except for fatigue). I did, however, end up with bronchitis from a chest cold I had in March of 2014. I caught several colds and/or flus in March and April of 2014 and during this time I would feel awful for a day or 2 and then I would feel great and be nearly asymptomatic of floxie symptoms as I recovered from each virus.

On May 17, 2015 I hand tilled a small raised garden in our yard, which took me most of the day due to fatigue. The next day i woke up and my neck, shoulder and upper back muscles were sore, which was no surprise. That pain subsided as the day went on. When I woke up the morning of May 19, 2015 my neck and shoulders were killing me but not in the muscles....the pain was around the joints (tendons). The pain did not go away. I soon began to see an increase in past symptoms (insomnia, pain, fatigue, tachycardia, frequent urination, frequent bowel movements, TMJ etc.) along with a new symptom, brain fog/memory problems. I continued going to work on most days (I took a couple days off after nights that I barely slept) until June 5, 2015. I went home early that Friday and hit the couch. I spent the next 5-6 weeks more or less couch-ridden/house-ridden with my only trip out of the house to see a doctor.

Based on the way I felt this summer, I appear to have developed heat intolerance (I typically love summer but the summer of 2015 was awful). Other symptoms that I am currently experiencing are insomnia, fatigue, lightheadness, tachycardia, poor short-term memory, PEM?( I typically crash 24-48 hours after overdoing it), chronic bronchitis, dry mouth (sleeping meds exacerbate this) shifting pain/tendonitis, shaky/weak muscles. My brain fog seems to have dissipated since I started Testosterone Replacement Therapy earlier this month (Clomiphene Citrate).


I'm with you on the uncertainty as to what role fluoroquinolones play at this point. My paresthesia/tendonitis were definitely caused by Cipro but what about everything that came afterwards? did Cipro just weaken my body to the point that my immune system is out of whack? The biggest trigger for me is overdoing it physically, but other things trigger small crashes. I feel the same way about cipro, it ruined my life in a matters of hours.

Sorry for the novel.

 

[Gingergrrl]

I signed up for the study and now I wait.

@AaroninOregon Am glad you signed up for the study and I think the more people they get, the better. The researcher in charge of the study also is studying Gulf War Syndrome.

Thank you for sharing your story and it is not a novel to me, it is very helpful. I plan to reply in more detail later tonight and am sorry for all you went through with Cipro (and me with Levaquin .) It really is one of the biggest regrets of my life and don't think my body would ever have reached this current state without it.

 

[Gingergrrl]

@AaroninOregon

Sorry for the delay and I really wanted to respond to your post in more detail.

I signed up for the study and now I wait.

Awesome as I said earlier!

March 4, 2014: The first symptom that I had was tingling/paresthesia from my waist down into my feet with the worst of it being in my lower legs and ankles. Within 2 days my ankles were so sore that I could hardly walk. Then came the bilateral achilles tendonitis.

Did you take the Cipro in March and have an immediate reaction or was it delayed? In my case, I took Levaquin in March/April 2010 and my acute reaction occurred on the 7th day. I was taking the standard dose of 500 mg 1x/day for seven days.

It started with acute pain in both arms and legs (ankles, wrists, everything) but quickly became apparent that the most severe reaction was to my right triceps tendon. It became so heavy and weak that I could not write with a pen or do any kind of gripping motion. I couldn't push a pin into a cork-board or anything involving gripping. The tendon became very fibrous like a rubber band instead of smooth and my arm felt like 100 lb weight was attached to my body. It often tingled and vibrated or felt numb but always with pain at the same time.

I had every test under the sun to try to regain use of my arm and was hospitalized b/c they thought maybe a brain tumor or MS or Guillaine Barre was paralyzing my arm muscle but all were negative. Along with the arm injury, I had severe pain and pressure in my head and ears, tachycardia and chest pressure, insomnia, full body pain and weakness and an overall feeling that I had been poisoned. Prior to Levaquin, I was working out with a trainer at the gym 3/x week after working a full-time job and had no limitations on my health.

Along with the insomnia came a whole cluster of symptoms: Tachycardia, anxiety, psychosis, dry mouth, fatigue, weak/shaky muscles, frequent urination, frequent bowel movements, pain in tendons throughout body, muscle fasciculations, TMJ symptoms, dry stuffy sinuses.

I had a whole cluster of symptoms too but the overall feeling of being poisoned, profuse weakness, pain, and the arm injury were the most severe. Ultimately they felt I had an immune system response that triggered dysautonomia but absolutely no one knew how to reverse it. I did six months of PT to regain use of my arm although it will never be fully normal.

From early January until mid-May 2015 I saw a lot of improvement in symptoms (except for fatigue). I did, however, end up with bronchitis from a chest cold I had in March of 2014. I caught several colds and/or flus in March and April of 2014 and during this time I would feel awful for a day or 2 and then I would feel great and be nearly asymptomatic of floxie symptoms as I recovered from each virus.

I also had believed that I had recovered from being floxed after about 1.5 years (although I could no longer hike or climb multiple flights of stairs) but regained my normal life and worked full-time, etc, until I got a severe case of mono following surgery. I think the Levaquin reaction and the mono so close together was more than my body could process.

On May 17, 2015 I hand tilled a small raised garden in our yard, which took me most of the day due to fatigue. The next day i woke up and my neck, shoulder and upper back muscles were sore, which was no surprise.

I was similar in the sense that I would do a task but my triceps couldn't do it so my neck, shoulder and upper back muscles would compensate and I'd be in pain for days or even weeks.

I spent the next 5-6 weeks more or less couch-ridden/house-ridden with my only trip out of the house to see a doctor.

This is about where I am now and I leave the house mostly for medical appts and people come to visit me vs. me going to see them like I used to. Do you have any lung weakness or shortness of breath?

I'm with you on the uncertainty as to what role fluoroquinolones play at this point.

It sounds like you are still in the early stages of Cipro toxicity and may recover like I did if you don't have another major hit to the body. I ended up living in a rental with a severe mold problem and that was the final hit to my immune system. My understanding though is that the FQ molecule never leaves the body and now we may have a test to prove it. Have you read the "Flox Report?" It is quite long but very comprehensive and explains things well.

My paresthesia/tendonitis were definitely caused by Cipro but what about everything that came afterwards? did Cipro just weaken my body to the point that my immune system is out of whack? The biggest trigger for me is overdoing it physically, but other things trigger small crashes. I feel the same way about cipro, it ruined my life in a matters of hours.

Levaquin also ruined my life in a matter of hours. I wish I had been allergic to the very first pill but I wasn't so I took the full seven days. From 2013 onward, my health has been in a steady decline and I relate to everything you said (except some of the symptoms are different of course.) The ENT who prescribed it regretted it deeply that he did not warn me of the consequences and urged me to join the lawsuits and file a report with FDA Medwatch. I spoke to four of the firms in the class action suit (back in 2010) and at that time you required a tendon rupture which thank God I did not have. I dropped it as I was not interested in the legal route as in regaining the use of my right arm.

Now I cannot breathe while standing and am trying to remind myself that I never, ever believed that I would regain the use of my right arm and I did so maybe it is possible to breathe and walk again, too.

Sorry for the novel.

Now it is my turn to apologize for the novel. I do wonder how much at the core is FQ toxicity syndrome versus ME/CFS but of course I will never know.

 

[slysaint]

@AaroninOregon are you on any of the floxie forums? If so, do any others know about the dna test?

 

[slysaint]

@Gingergrrl found this; thought it might be of use to you both
http://drsharonnorling.com/acumen-lab/

I'm a bit confused now though because I contacted Lisa B at Floxie Hope to ask if any of them had had the DNA adduct analysis test and her reply was:
"No, but I no longer think that's the damage mechanism. It would be nice for there to be a smoking gun of that sorts though. It would make getting justice a lot easier."

 

[Gingergrrl]

@Gingergrrl found this; thought it might be of use to you both
http://drsharonnorling.com/acumen-lab/

@slysaint She sounds great except that I am in the US (not the UK.) Do you know of anywhere in the US that does this test? I have not yet done any research on it beyond that one link that I posted. I saw a doctor this morning (for a totally different issue) and even though he was fairly old-school he immediately said that FQ injuries are very common and he was struck by the fact that I was in great health prior to the Levaquin. It was validating even though he had no clue of what to do about it (and it was more of a passing comment while gathering my history.)

I'm a bit confused now though because I contacted Lisa B at Floxie Hope to ask if any of them had had the DNA adduct analysis test and her reply was:
"No, but I no longer think that's the damage mechanism. It would be nice for there to be a smoking gun of that sorts though. It would make getting justice a lot easier."

That is interesting and did Lisa B. say what she thought the mechanism might be if not that? Have you read the letter that Dr. Jay Cohen (in the US) wrote to congress re: FQ damage? If not, I will find that link and post it for you later.

 

[slysaint]

@Gingergrrl
The doctors in CA ,(California?) see bottom right hand corner for address, but she uses the lab in the UK.
However, I emailed Lisa B. Again to ask if she'd read the doc I posted way back about the dna adduct trial and she answered that she thought the guy who wrote it was a fraud and that there were mistakes in the tests.
So I just don't know anymore.
(I thought I'd posted this yesterday but it was still sitting here.)

 

[Gingergrrl]

@Gingergrrl
The doctors in CA ,(California?) see bottom right hand corner for address, but she uses the lab in the UK.

Sorry I totally missed that and will look at the link again later!

 

[AaroninOregon]

@Gingergrrl Sorry for the delay, I'm planning on replying to you today...I overdid it Wednesday morning, so I'm still recovering.

 

[AaroninOregon]

@AaroninOregon are you on any of the floxie forums? If so, do any others know about the dna test?

I am not on any floxie forums. I didn't know there were any currently active floxie forums.