Developed POIS after antibiotic use

[Simon66]

Hi,

I've just joined and wanted to communicate what I believe the cause of this illness is, at least in my case.

I've been ill since aged 14 so maybe being sexually active started all of this for me. Initial symptoms were chronic fatigue but have progressed since then.

A year ago at age 30, I was on a course of a dangerous antibiotic called Ciprofloxacin. I have since developed a large number of symptoms like fibromyalgia, connective tissue damage, joint pain, fat padding loss. All of it worsens after an orgasm and the worst of it persists for about a week.

I believe high oxidative stress is the action in this illness. I find I sustain tissue damage in any part of my body that I put my bodyweight on for an extended period of time. I have lost the fat padding in my feet and am now severely flat-footed, I have lost the fat under my eyes and have prominent blue veins. I have to sleep on a doughnut shaped pillow so I don't lose further cartilage in my ears. My leg bones also hurt and I get bruising on my legs just from walking.

I have done tests which show a highly elevated Superoxide Dismutase enzyme, this measures oxidative stress. I also have abnormal bone inflammation markers called Osteocalcin and Beta-cTX. My cholesterol is also abnormally high suggesting high lipid oxidation.

I believe the cause of this oxidative stress to be from the loss of gut bacteria due to antibiotic use. There is a particular group of gut bacteria called "butyrate producers" that regulate inflammation in the body. I have tested my gut bacteria and have lost practically all of these butyrate producing species such as Roseburia, Faecalibacterium, Akkermansia, Copprocus.

I encourage people to check their gut bacteria using a "16S" test such as Ubiome or Atlas Biomed and see if they too are missing these crucial bacteria. Some tests just use cultures of bacteria and are useless, make sure it is a "16S" test which uses a technique called PCR.

Let me know what you all think.

Thanks,
Simon

[Muon]

Hi Simon,

Can you put this lab test data inside this thread?
http://poiscenter.com/forums/index.php?topic=2684.0

We need your numerical data results and a good overview of what has been found so far, so people like myself can check these out, post them in the thread above plz. How do they know you have connective tissue damage? How did they test this? Btw my leg bones hurt as well sometimes, it's mostly isolated to the center of my shinbones.

Interesting, I was reading today about Tregs and environmental factors and they mentioned butyrate producing species. I looked this up because specific T-regs can actually induce IgG4 and IFN-gamma production (which are both high in my case) See figure 1: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4332351/

Thanks for sharing this info.

[Simon66]

Sure, I'll add that later today.

Inulin is a prebiotic that boosts butyrate bacteria so might be worth trying. Since I've lost most butyrate species, it has only a minor effect on me and I can take much because I have bad reactions to foods and supplements.

I was looking at a faecal microbiota transplant to get missing butyrate species back in small numbers but there are a number of issues I have with the procedure including the safety of the donor samples and some of the preparation they require patients to make including having a colonic lavage which could worsen things.

[Simon66]

Any idea what b. f. stands for? Cannot find it anywhere.

[Muon]

Have you done a test for osteoporosis?
You could have bone resorption or turnover problems resulting in osteoporosis.
These beta crosslaps could be responsible for degradation of type 1 collagen. I wonder if POIS raises this parameter.
I will at least check osteocalcin and Beta cross laps for myself. Keep us up to date whenever you decide to get a faecal microbiota transplant.

b/f = brain fog

[b_jim]

I ate inuline every day and it seems no to help.
But anyway, I agree all what you wrote.
=> With the intestine all is possible.
LOT of disease starts in the intestine (few weeks ago scientists found that Alzheimer starts in gut....).

I always said my Pois starts in my intestine because each time, ~3 hours after orgasm, I have diahreas and i feel all my intestine start to liquifefy.

[Simon66]

Thanks

I did the following test for osteoperosis, everything was normal except the beta-CTx:

https://www.medichecks.com/oesteoporosis-tests/osteoporosis-profile

I did the osteocalcin test separately. I did also test calcitonin and that was normal.

I've done loads more tests but too many to write down. Some of my steroid hormone were high during a flare like Cortisol, aldosterone and sex hormone binding globulin. I'll add those to the other page as well. All the blood viruses and lyme disease were negative.

I have not had a formal diagnosis of tissue damage but it is a fairly common reaction to Fluoroquinolone antibiotics which are known to damage collagen. I can actually feel I have lost cartilage in my ear auricles and on the hyoid bone in my neck.

Do you know of anyone that has tested their gut microbiome? I have been considering going to the Taymount clinic for FMT but doubt I will have the procedure unless they remove the requirement for a colonic as preparation. They aren't actually medical practitioners so I really don't know how ethical they are and they don't accept liability for any diseases transmitted in the donor samples. They also reserve the right to cancel your procedure and keep your money, it's all a bit shady.

[Simon66]

B_jim,

If you test your gut bacteria as I described above, we can hopefully find a common cause of our issues.

[Muon]

You can't diagnose osteoporosis based on the tests you have done. The only reliable method for measuring osteoporosis ,as far as I know, is this: https://en.wikipedia.org/wiki/Dual-energy_X-ray_absorptiometry

Doctors never looked at my microbiome. Don't know why, maybe it's a grey area for them or these tests aren't reliable. I have no clue where to get this tested.

[Simon66]

Yeah, a bone DEXA scan is the way to confirm osteoperosis but my tests are for initial investigations. I am waiting to see a metabolic doctor so maybe he will order a scan but I don't much care if I have osteoperosis, it is a symptom of a bigger problem.

Doctors don't even look at the microbiome, maybe wait 50 years and they will finally do their jobs properly. If it is a chronic disease that they don't understand, they just say it is mental illness and prescribe anti-depressants  We are on our own with this illness I think.

[Simon66]

If you live in the USA, there is a company called Ubiome. In the UK, there is a company called Atlas Biomed.

In whatever country you live, just find a "16S" microbiome test.

[Muon]

You mean this one? https://atlasbiomed.com/nl/microbiome
But does the medical community take these results serious? How reliable are these tests?

[Simon66]

As I said previously, I don't think you will get help from the medical community for something they don't yet understand. They should be treating autoimmune disease and maybe Alzheimer's or Multiple Sclerosis using gut bacteria but that will not happen for maybe 30 years. They treat autoimmune disease with steroids instead and that causes the patient's bones to die eventually.

The 16S microbiome test measures bacteria in a stool sample, it is a reliable test but bacteria do shift depending on what you eat so you might want to do it a few times.

If you talk to microbiologists, they will know a lot more about the importance of gut bacteria than doctors. You can also read medical research about the link between Celiac disease and low butyrate bacteria like faecalibacterium.

I have posted my results here as requested:
http://poiscenter.com/forums/index.php?topic=2684.0

[quotz]

Simon,

I live in the UK too! How did you find doctors that knew this much about your condition? I struggled to find NHS doctors about my brain fog and POIS, and the referrals take ages. Did you go private? Could you recommend some doctors? All GPs I went to so far just kept ordering simple blood tests and had no idea whats going on, and they finally referred me to a neurologist which I had to wait for months, and he came up with nothing and eventually stopped replying since I moved out for the summer. I am thinking of suing them for medical negligence.

Best,
Quotz

[Simon66]

Quotz,

I wouldn't bother suing, it won't help you and may prevent further NHS treatment. I've had no luck with doctors, I do have a distant relative who is a microbiologist and he helped me a bit.

In America, they have many "functional" doctors who can diagnose unconventional illnesses but I haven't talked to any in the UK. As I said previously, I developed this POIS after taking a fluoroquinolone antibiotic and there are thousands of people affected by it. I think it is due to gut bacteria loss and I am looking to fix it myself.

If you read this forum, there is a Dutch doctor that can diagnose this condition but I really don't need a diagnosis.

I do research myself and then order tests from Medichecks.com

[nanna1]

Hi Simon66,

  Thanks for posting your medical records. You mention some virus test that you took. Would you post the results of those virus test as well. I mention this because it could help rule out possible causes of POIS and put any correlations (positive or negative) on a statistical basis. Thanks again for sharing your valuable test! 

[quotz]

Simon,

I havent heard of any "functional" doctors in the UK. I need to find a doctor who knows what brain fog is, and possibly POIS too, as they are related in my case. If you know any, or you can give me any advice on where to look for them, I would be very grateful.

Also, check fecal transplantation. There are some people who swear by it.

Best,
Quotz

[Simon66]

Nanna1,

I have updated my results post.

Quotz,

I am pretty much self-treating myself right now so I don't know. Regarding faecal transplants, I've written a bit about it in my earlier replies. You could order a microbiome test from Atlas Biomed and see if the butyrate bacteria are missing like I found, that might give you an answer for your issues or it might not.

[Vandemolen]

About 18 years ago I started masturbating a lot. First after every ejaculation I would take a shower. But later I got lazy. I only used a towel and go to sleep. The next morning I took a shower. After a few months I got an UTI. The doctor gave me Ciprofloxacin. I helped against the UTI. It was at that time that my POIS got worse. I don’t think Ciprofloxacin is the reason why I got POIS. Later Ciprofloxacin didn’t help. I took antibiotics that are higher on the ladder. Now I am on Cefuroxim. I used to take onlye a break of 1 week and then started a new treatment with Cefuroxim. Now I developed candida. So now I try to take a break of a few weeks. And drink and eat pro biotics.

[Simon66]

Yeah, I agree. I think the POIS was there before Cipro as I'd had some symptoms since around aged 14. I did have antibiotics as a child so maybe that triggered it initially or maybe I was just born with it and symptoms started when I hit puberty.

I do think POIS is caused by gut dysbiosis though, antibiotics and steroids can do damage to gut bacteria and so can food poisoning.