Ciprofloxacin again - a never ending story

[hmnr asg]

Yes, but that is typical. Side effects often occur months later. I can only explain this with the replication circle of cells in your body (more and more damaged mitochondria).
Trust me, I'm following this since 2019 as a Community Ambassador for OMF and have met dozens of pwME who have a similar trajectory.

Thanks for letting me know. I guess I should contact Fereshteh.

 

[SWAlexander]

That’s because I take Tenofovir which has Polysorbat 80 I think

Thrombosis made life hell for me. I´m taking blood thinner since May and I´m beginning slowly to function.

 

[J.G]

Due to a floxed friend who has still reservoirs of Ciprofloxacin after almost ten years in her cells I decided to do a test.

Are these reservoirs localised to any particular organ?

 

[SWAlexander]

Are these reservoirs localised to any particular organ?

See RX-List: https://www.rxlist.com/cipro-side-effects-drug-center.htm

 

[J.G]

See RX-List: https://www.rxlist.com/cipro-side-effects-drug-center.htm

That's an impressive list of effects and side effects, but I don't immediately see in that document whether there is one particular locus where cipro persists after one stops taking the drug.

 

[Martin aka paused||M.E.]

Thrombosis made life hell for me. I´m taking blood thinner since May and I´m beginning slowly to function.

That's interesting also bc Ron mentioned sticky blood years ago. But all do a always tell me that my blood looks completely normal.

 

[Martin aka paused||M.E.]

Are these reservoirs localised to any particular organ?

Good question. Not that I am aware of. They tested lymphocytes from peripheral blood.

 

[Martin aka paused||M.E.]

See RX-List: https://www.rxlist.com/cipro-side-effects-drug-center.htm

I think what is crucial to understand is that the added flourine to the quinolones let them penetrate nerves and tissues. So there could be even higher reservoirs in the tissues and nerves.
My GP has instantly said after my myopathy diagnosis that it's due to Cipro.

 

[Martin aka paused||M.E.]

That's an impressive list of effects and side effects, but I don't immediately see in that document whether there is one particular locus where cipro persists after one stops taking the drug.

Read my post above: potentially everywhere even in lymphocytes in high amounts

 

[SWAlexander]

That's interesting also bc Ron mentioned sticky blood years ago. But all do a always tell me that my blood looks completely normal.

"...blood looks completely normal." This is what my PCP told me. I demanded a D-Dimer. The follow-up Bloodtest showed the number 3003. A sonogram confirmed several clots in my left leg.
What I´m saying is, the road of discovery does not end with one or two tests. I was very glad I insisted because she tried to shrug it off.

 

[Martin aka paused||M.E.]

"...blood looks completely normal." This is what my PCP told me. I demanded a D-Dimer. The follow-up Bloodtest showed the number 3003. A sonogram confirmed several clots in my left leg.
What I´m saying is, the road of discovery does not end with one or two tests. I was very glad I insisted because she tried to shrug it off.

Many thanks! I will do a d-dimer too!

 

[Martin aka paused||M.E.]

Edit

 

[SWAlexander]

Martin, have you been tested for X-linked (ALD)? It is ABCD1 gene variant.
See if any symptoms would fit yours. but only a test can reveal if you have high phytanic acid.
https://medlineplus.gov/genetics/condition/x-linked-adrenoleukodystrophy/
The test is paid by US insurance but PCPs need instruction from the lab, just because most never heard of ALD.
The lab blood test code is "VLCFA"?

 

[Martin aka paused||M.E.]

Martin, have you been tested for X-linked (ALD)? It is ABCD1 gene variant.
See if any symptoms would fit yours. but only a test can reveal if you have high phytanic acid.
https://medlineplus.gov/genetics/condition/x-linked-adrenoleukodystrophy/
The test is paid by US insurance but PCPs need instruction from the lab, just because most never heard of ALD.
The lab blood test code is "VLCFA"?

I seem to have multiple snps

 

[SWAlexander]

I´m really surprised that ME/CFS research is not looking into X-linked (ALD). From what I have read so far I could not find hints compared with ALD.

 

[SWAlexander]

I seem to have multiple snps View attachment 44848

I know, I have one ABCD1 variant and border high phytanic acid but tested 10 years ago. Now I will test again if I can convince my PCP to take the blood sample. I will send it to the lab personally in Germany.

 

[Martin aka paused||M.E.]

I know, I have one ABCD1 variant and border high phytanic acid.

Have to test for phytanic acid but I don't have the symptoms except weakness but no wonder I'm severely ill

 

[SWAlexander]

Have to test for phytanic acid but I don't have the symptoms except weakness but no wonder I'm severely ill

Right. Don´t you think we should test, to exclude? Muscle weakness was my first hint after I saw ABCD 1 variant in my DNA.

You may also look a little closer: Characterization of breakpoint sequences of five rearrangements in L1CAM and ABCD1 (ALD) genes. https://onlinelibrary.wiley.com/doi/abs/10.1002/humu.10072

 

[Martin aka paused||M.E.]

Right. Don´t you think we should test, to exclude? Muscle weakness was my first hint after I saw ABCD 1 variant in my DNA.

Yes I think we should exclude everything what could possibly come on top of ME

 

[SWAlexander]