Ciprofloxacin and other flouroquinolones

[pattismith]

hm okay... I don't know if it sounds stupid but I have to admit that I can not tell you if I have muscle weakness or just overall weakness... I can lift things like beer boxes or so. But my muscles will shake while doing this. And when overdoing it I will get bad crashes 12-24 hours later. Is this muscle weakness?

At this point I wont make any experiments with medications. After cipro I find this idea crazy. Not for others here on PR - don't get me wrong - but for me.

But again: I can't find the difference between being floxed and having ME. In my opinion, the floxed all have ME! So if one could understand what flouroquinolones exactly do, that might be helpful with ME as well...

Martin, you are young and your illness may disappear quickly all by itself, so you don't need to experiment any drug.
I am ill for 35 years (I had my first Minocycline treatment as a teen), so my point of view has changed over time.
My first muscles symptoms were some kind of cramps when I was contracting too long, and pain after exercise (pain for 2 days).

The question of seing floxed as a toxical model of ME is interesting, but fluoroquinolones have several ways of being toxic to many tissus and cells, so it is rather complex and not all elucidated yet.
I'm not sure that all the floxed have the same kind of symptoms, do they?

How did you get this tested? I always hit the wall when I try to convince any neurologist to diagnose damage done by the atbx.

-Tests for neuromuscular junction disorders diagnosis are:

• Repetitive nerve stimulation
• Electromyography (EMG)
• Nerve conduction studies
• Exercise testing
• Single-fiber EMG

the treatment is cholinesterase inhibitor (MESTINON...)

-Tests for HypoPP is a specific kind of electromyography (see here)

The treatment is DIAMOX or other carbonic anhydrase inhibitors.

I didn't have any EMG testing, but I talked to my GP and he agreed that a trial with these medications was worth doing, given the fact that they are not pricey and that the benefit/risk balance was good.

I tryed only two days with the first med (Cholinesterase inhibitor), and got worse so I stopped.

Then I tryed Diamox at low dose, and immediately found some relief. Now I take just the dose that gives me improvement, as I don't want to take too much.

I am very lucky that Diamox went fine for my muscles, because it released me too from the head pressure I have for more than 10 years.
In fact, Diamox is also the cure for intracranial hypertension, so It gave me the diagnosis of my central neurologic problem at the same time...

If you go to your doc with the publications showing how Azythromcin can attack the neuromuscular junction, he may listen to you, don't you think so?

If you need any help to pick the good documents to back up, I can do it for you, just send me a personal message

 

[JES]

I have had multiple fluoroquinolone courses to treat infections as have probably most kids in my country that were born in the 80's or 90's. I had my latest one week course in 2009 and I did not notice any negative side effects. If anything my neuropathy was slightly better after the course. With the current knowledge I would never have taken fluoroquinolones, but they had no negative effects on me.

 

[kangaSue]

Some ME patient have their muscle function improved by this drug.

https://www.healthrising.org/blog/2...nic-fatigue-vagus-nerve-stimulation-exercise/

 

[kangaSue]

I had toxicity from Doxycycline and Macrolides which seem to have impaired my muscular ion channel

Do you know which particular ion channel it is that is impaired in you?

 

[kangaSue]

How did you get this tested? I always hit the wall when I try to convince any neurologist to diagnose damage done by the atbx.

Do you have any signs or symptoms of Autonomic Neuropathy (or Small Fibre Neuropathy, same thing), impaired GI transit, constipated or rapid transit causing diarrhea, don't sweat much or too much or hot flash-like sweating, bp low or high or POTS? As AN can be autoimmune, it follows that antibody testing is a required step in confirming the diagnosis

 

[pattismith]

Do you know which particular ion channel it is that is impaired in you?

I wish I 'd know, it may be either calcium, sodium or potassium channels, it's hard to say.

I have a bunch of mutations on my muscle L type calcium channel CACNA1S, but nothing rare. Anyway, I wonder if one or several of those could have been a predisposing factor for my reactions to antibiotics...

(9 known mutations on CACNA1S are involved in Hypokalemic Periodic Paralysis but I don't have these ones)

 

[kangaSue]

I wish I 'd know, it may be either calcium, sodium or potassium channels, it's hard to say.

Tests for antibodies to voltage gated calcium channels and potassium channels are widely available commercially.

I looked into your mention above of Diamox, I see it's suggested as a remedy for POTS for some people with Ehlers Danloss Syndrome when POTS is from increased intracranial pressure.Is EDS something you have?

I think I might have mentioned to you before that you can get a subtle increase in intracranial pressure from having a compressed left renal vein too which can cause POTS, other issues of autonomic dysfunction and symptoms of chronic fatigue which has been taken to be CFS in a number of cases.

 

[Tammy]

When I first started hearing about all the cons on these anti-biotics , I have made sure that my Dr. has in my medical chart that I am allergic to Flouroquinolones. Might be something for others to consider.

 

[mariovitali]

@Jesse2233 @JaimeS @Janet Dafoe (Rose49)

Could this thread be -yet- one more case of Drug-induced CFS?

And when it comes to a viral infection (such as HBV or EBV) consider the following :


“liver injury caused by the viral infection affects many cellular processes such as cell signaling, apoptosis, transcription, DNA repair which in turn induce radical effects on cell survival, growth, transformation and maintenance. The consequence of such perturbations is resulted in the alteration of bile secretion, gluconeogenesis, glycolysis, detoxification and metabolism of carbohydrates, proteins, fat and balance of nutrients.The identification and elucidation of the molecular pathways perturbed by the viral proteins are important in order to design effective strategy to minimize and/or restore the hepatocytes injury."

In the same paper you will also find several entries about Unfolded Protein response, Endoplasmic Reticulum Stress.

Link :
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4168079/


Up next : There appears also to be a connection between vaccinations and ME/CFS :

Chronic fatigue syndrome and fibromyalgia following immunization with the hepatitis B vaccine: another angle of the 'autoimmune (auto-inflammatory) syndrome induced by adjuvants' (ASIA).

https://www.ncbi.nlm.nih.gov/pubmed/25427994

We can hypothesise that one reason this may be happening is because of the following :

Hepatitis B vaccine induces apoptotic death in Hepa1-6 cells.
....
....
We conclude that exposure of Hepa1-6 cells to a low dose of adjuvanted hepatitis B vaccine leads to loss of mitochondrial integrity, apoptosis induction, and cell death, apoptosis effect was observed also in C2C12 mouse myoblast cell line after treated with low dose of vaccine (0.3, 0.1, 0.05 μg/ml). In addition In vivo apoptotic effect of hepatitis B vaccine was observed in mouse liver.

https://www.ncbi.nlm.nih.gov/pubmed/22249285


People travelling outside of US need to be vaccinated with Hepatitis B Vaccine among others :


https://www.vaccines.gov/who_and_when/adults/index.html

@MartinDH

If you can, please take a Fibroscan test.

 

[Gingergrrl]

When I first started hearing about all the cons on these anti-biotics , I have made sure that my Dr. has in my medical chart that I am allergic to Flouroquinolones. Might be something for others to consider.

That is very smart @Tammy and I did the same thing after my neurotoxic reaction to Levaquin in 2010. All of my records, including with Medic Alert, state that I am allergic to FQ antibiotics.

 

[pattismith]

Tests for antibodies to voltage gated calcium channels and potassium channels are widely available commercially.

I looked into your mention above of Diamox, I see it's suggested as a remedy for POTS for some people with Ehlers Danloss Syndrome when POTS is from increased intracranial pressure.Is EDS something you have?

I think I might have mentioned to you before that you can get a subtle increase in intracranial pressure from having a compressed left renal vein too which can cause POTS, other issues of autonomic dysfunction and symptoms of chronic fatigue which has been taken to be CFS in a number of cases.

not all the antibodies to calcium channels are available, I didn't find a test for the L type. On the other hand I tested a big amount of antibodies of all sorts, and the rare positives were common positives auto antibodies that many people have. Nothing that could indicate an unusual auto-immune hyperactivity I think.

EDS I don't know, I don't have the hyperlaxity seen in the classic form and there is no test for this condition, so...

And yes we have talked previously about potential post-prandial abdominal vascular compression, and this makes sense to me!

Thank you Kanga for your help, your experience is precious to me

 

[kangaSue]

EDS I don't know, I don't have the hyperlaxity seen in the classic form and there is no test for this condition, so...

Classic form of EDS is just the biggest group, you can have it where you just have very flexible fingers or toes, it doesn't have to be all your joints. They can test for EDS but trying to get it done usually proves to be a difficult saga unless you display classic symptoms..

 

[Vphoenix]

I'm floxed too and all my issues stem from FQs. Symptoms list is endless. Ketogenic diet and lowoxalate has helped me