Ciprofloxacin again - a never ending story

[Martin aka paused||M.E.]

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You definitely have some homozygous mutations there. And what does your doc do about it?

 

[SWAlexander]

You definitely have some homozygous mutations there. And what does your doc do about it?

So far nothing for 60 years besides cortisone for psoriasis and prednisone for low cortisol. Now I suppose to check in to the hospital 21 days ago, for a full exam, but there is no bed available.

 

[Boba]

So far nothing for 60 years besides cortisone for psoriasis and prednisone for low cortisol. Now I suppose to check in to the hospital 21 days ago, for a full exam, but there is no bed available.

Wow. I have a pathogenic mutation in the abcd1 gene as well. Just had genetic counseling for it. They are checking my blood now to confirm.

 

[SWAlexander]

Wow. I have a pathogenic mutation in the abcd1 gene as well. Just had genetic counseling for it. They are checking my blood now to confirm.

The most important part after the blood results is to read the lab recommendations. See blue mark area.

 

[Boba]

The most important part after the blood results is to read the lab recommendations. See blue mark area.
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Thank you! Unfortunately they are just doing another DNA Test with the blood to confirm that I have the gene. They also mentioned that they will check the percentage of sth with the gene. I simply forgot to ask what that exactly means. My theory is that the base for my suffering now is this faulty gene/adrenomyeloneuropathy. Age onset and symptoms match with my vita.

 

[SWAlexander]

Thank you! Unfortunately they are just doing another DNA Test with the blood to confirm that I have the gene. They also mentioned that they will check the percentage of sth with the gene. I simply forgot to ask what that exactly means. My theory is that the base for my suffering now is this faulty gene/adrenomyeloneuropathy. Age onset and symptoms match with my vita.

I hope they check for Myasthenia Gravis (MG) / Eaton-Lambert-Syndrome at the same time. This could also be one of the other ABCD1 markers.

 

[Martin aka paused||M.E.]

I hope they check for Myasthenia Gravis (MG) / Eaton-Lambert-Syndrome at the same time. This could also be one of the other ABCD1 markers.

That was excluded in neurology at least

 

[SWAlexander]

That was excluded in neurology at least

Huhhh, what a relief.

 

[Shanti1]

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I'm not saying ABCD1 isn't a concern for you because clearly your phytanic acid is elevated, but when looking at results from 23andMe raw data, it is important to recognize that being homozygous for a SNP mutation is most of the time none health impacting. 23andME tests for >150 ABCD1 SNPs, most of them are DNA regions that do not impact protein structure, protein productions, or the active binding domain. The key is knowing which of the SNPs in the long list of the ones tested is the impacting SNP and then checking that one specifically for a mutation.

 

[SWAlexander]

I'm not saying ABCD1 isn't a concern for you because clearly your phytanic acid is elevated, but when looking at results from 23andMe raw data, it is important to recognize that being homozygous for a SNP mutation is most of the time none health impacting. 23andME tests for >150 ABCD1 SNPs, most of them are DNA regions that do not impact protein structure, protein productions, or the active binding domain. The key is knowing which of the SNPs in the long list of the ones tested is the impacting SNP and then checking that one specifically for a mutation.

Thank you Shanti1. This is the reason why I will test again, as soon I can travel to the lab directly.

 

[Shanti1]

This is the reason why I will test again, as soon I can travel to the lab directly.

You are on it

 

[SWAlexander]

You are on it

The reason I pursue the Phytanic acid test is I would like to know if I´m genetically preconditioned for all Sulfa-based antibiotics. I always end up in an anaphylactic shock when doctors disregard my warnings.
Shanti1, please would it be possible for you to explain the connection between Phytanic acid and Sulfa-based antibiotics, in a lesser complicated language? My brain is a little foggy.
Reading "Breakdown of 2-hydroxylated straight chain fatty acids via peroxisomal 2-hydroxyphytanoyl-CoA lyase: a revised pathway for the alpha-oxidation of straight chain fatty acids, did not really answered my question. https://pubmed.ncbi.nlm.nih.gov/15644336/

 

[Shanti1]

@SWAlexander Hi- I am not aware of any link between phytanic acid, ABCD1 gene, and allergy to Sulfa-based antibiotics. The paper you posted also does not describe such a relationship. Unfortunately, I do not know of a way to genetically predict who may have an allergic reaction to sulfa antibiotics.

 

[Gingergrrl]

I hope they check for Myasthenia Gravis (MG) / Eaton-Lambert-Syndrome at the same time. This could also be one of the other ABCD1 markers.

Apologies if this is a dumb question but what are "ABCD1 markers" and how do they relate to fluoroquinolone antibiotics (Levaquin, Cipro, etc) and/or to Lambert Eaton Myasthenia Syndrome (LEMS)?

The very first trigger of my illness was a neurotoxic reaction to Levaquin (and in my case, I've never taken Cipro) but Levaquin & Cipro are basically identical in the context of being floxed or having "fluoroquinolone toxicity syndrome".

I went from basically perfect health to being floxed in early 2010 (followed by a series of other events over the next few years) and ended up with four diagnoses, one of them being Lambert Eaton Syndrome (LEMS). So this thread is all of extreme interest to me (even though I might not understand all of the science behind it )!

Edited to add: I am assuming it is a genetic test that links with both being floxed and possibly having MG or LEMS? Is this correct? Also, would it lead to a specific treatment or is it more for academic knowledge?

 

[Krokus]

@SWAlexander
A Sulfa-based antibiotic maybe a Sulfoamid antibiotic?
The fluoroquinolone antibiotics belong to a different class of antibiotics.

If you want to see how drugs interact, then visit Flockhart's table. Nowadays there are genetic tests in regard to these enzymes
Drug Interactions Flockhart Table

 

[SWAlexander]

@SWAlexander Hi- I am not aware of any link between phytanic acid, ABCD1 gene, and allergy to Sulfa-based antibiotics. The paper you posted also does not describe such a relationship. Unfortunately, I do not know of a way to genetically predict who may have an allergic reaction to sulfa antibiotics.

Thank you Shanti1. I must continue on this path because my whole family has a strong reaction, especially to amoxicillin. My mother, an RN during and after WWII, used extensively Peneciln before and during pregnancy. Later she fixed all "medical problems" we kids had with Peneciln. She lost her license in 1955 because of this uncontrolled use of Penicillin on returning wounded and infected soldiers, including my father, after the war. My younger brother died of ALS.
This paper was my first hint: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC151532/
"Peroxisomal disorders have been associated with malfunction of peroxisomal metabolic pathways, but the pathogenesis of these disorders is largely unknown. X-linked adrenoleukodystrophy (X-ALD) is associated with elevated levels of very-long-chain fatty acids (VLCFA; C>22:0) that have been attributed to reduced peroxisomal VLCFA β-oxidation activity."

 

[Krokus]

For those, who speak German:
Dr Pieper, who supports FQ patients, has written a book
Fluoroquinolone-Associated Disability FQAD: Pathogenese, Diagnostik, Therapie und Diagnosekriterien: Nebenwirkungen von Fluorchinolonen

 

[Martin aka paused||M.E.]

It's sth many practitioners do wrong. And it's wrong in so many ways. ANTIbiotic. If one thinks about why an organism produces what we take as a drug then one should be already more careful.

But it's not only this. The excessive use of AB has gotten us into real trouble bc of persistent bacteria. Some researchers say that we not only produce AB resistant strains but also super-resistant bacteria that are impossible to be cleared by our immune system. So I can only ask myself why we don't spend more money in phages. I think it's sheer lobby interests of pharmaceutical companies. AB are super cheap to produce.

Then thirdly there is the question what it does to our species. It's now well known that antibiotics can destroy parts of our DNA. So what does that mean not only for fertility but also for chronic illnesses of upcoming generations?

 

[SWAlexander]

For those, who speak German:
Dr Pieper, who supports FQ patients, has written a book
Fluoroquinolone-Associated Disability FQAD: Pathogenese, Diagnostik, Therapie und Diagnosekriterien: Nebenwirkungen von Fluorchinolonen

I know and thanks. I´m watching his 2-hour video explaining the 4 different
Fluorchinolone damages.
Just in case you speak German here is a link:

 

[SWAlexander]

It's sth many practitioners do wrong. And it's wrong in so many ways. ANTIbiotic. If one thinks about why an organism produces what we take as a drug then one should be already more careful.

But it's not only this. The excessive use of AB has gotten us into real trouble bc of persistent bacteria. Some researchers say that we not only produce AB resistant strains but also super-resistant bacteria that are impossible to be cleared by our immune system. So I can only ask myself why we don't spend more money in phages. I think it's sheer lobby interests of pharmaceutical companies. AB are super cheap to produce.

Then thirdly there is the question what it does to our species. It's now well known that antibiotics can destroy parts of our DNA. So what does that mean not only for fertility but also for chronic illnesses of upcoming generations?

My mother followed the instruction given by Dr´s. She was a Red Cross nurse until 1945 in the Lazaret on the Russian front, where gangrene was found nearly in every patient. Penicillin was the new wonder drug at the time and pills were handed out like candies.