Can bacterial infections last for several decades?

Arnie Pye

Arnie Pye

Senior Member (Voting Rights)
Is it possible to get a bacterial infection as a young teenager and then never lose it during the next 40+ years?

I'm not talking about Lyme, Candida or EBV, I'm talking about a group B streptococcus infection. I have no further medical details about the infection, other than the fact that it improves with erythromycin, and that eating sugary stuff makes it worse. However, even in ideal circumstances, it never stays away for very long.
 
Isn't this the whole basis of the concept of the microbiome? That some bacteria take up residence in our bodies for life?

I guess what you mean is: can infections that impede healthy functioning stick around? As I understand it, we are constantly keeping bacteria at bay. There are tolerable levels of many bacteria that cause no problems. But if our immune system is challenged in some way, those levels can get out of control and start creating havoc.

So I think the answer to your question is yes. But its not as if you can 'rid' yourself of the offending bacteria and be okay from then on. Bacterial infection is kind of an occupational hazard of being alive.

Edit: if you're constantly getting really sick from bacterial infections, make sure someone checks you don't have an immune deficiency disorder. Some IDDs take decades to diagnose.
 
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Whether Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) can persist into adulthood, the answer is uncertain:
PANDAS Network said:
Whether PANDAS can eventually become a chronic condition that will continue into adulthood, no one really has an answer for that.

Even practicing doctor and researcher, Dr. Tanya Murphy states in Clinical Factors Associated with PANDAS (pdf provided by the NIH). “Whether children with a PANDAS subtype typically will go on to remission or progress to a more chronic course of illness is not known.”

For this reason, parents MUST remain vigilant in protecting their children from contracting strep. Also, do not assume one can forgo treatment as a child in hopes that puberty holds the key.

http://www.pandasnetwork.org/understanding-pandaspans/long-term-prognosis/
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Should add that adult PANDAS is a real thing and very under diagnosed. Strangely, it seems that it's only a few psychiatrists that are diagnosing it. Primary care docs aren't looking for adult PANDAS.

But the question of whether one can get PANDAS as a child, and left untreated, have it persist into adulthood, remains unanswered.

Psychology Today said:
There is virtually no literature on adult P.A.N.D.A.S.
...
However, given the degree of pain and suffering so many people experience as a result of undiagnosed and or untreated P.A.N.D.A.S. I believe it is important to publish this information now. I will point out that not all patients with P.A.N.D.A.S. Have elevated antibody titers and this probably relates to different strains of streptococci.

Also, T&A (removal of tonsils and adenoids) is not always the definitive procedure for every patient. Foci of chronic/subacute infection may be in the sinuses, ears, mastoids, abscesses and other places.

And no, not every patient with tics, Tourette's, GAD, OCD, anorexia nervosa, and a plethora of other neuropsychiatric symptoms as P.A.N.D.A.S.

But, as we are told at the beginning of medical school, if one does not consider a diagnosis one does not look for the diagnosis and if one does not look for the diagnosis one does not make the diagnosis.

https://www.psychologytoday.com/blo...vil-pandas-part-ii-adult-affliction-treatment
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Psychology Today said:
PANDAS occurs in adults. Period. Is most of it new onset, or has it been there a long time, since childhood? Yes. Can one differentiate between the two? Not with any certainty in the preponderance of cases.

Let’s ratiocinate for a moment. If an adult can acquire Rheumatic Fever or Glomerulonephritis after a strep infection, that adult can acquire PANDAS. If an adult can acquire Lyme disease, mycoplasma, and a myriad of viral infections, that adult can acquire PANDAS.

https://www.psychologytoday.com/blog/attention-please/201501/adult-pandas-seek-and-ye-shall-find
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Webdog said:
Whether Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) can persist into adulthood, the answer is uncertain:
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I find this subject very difficult, embarrassing and long-winded to discuss which is why I deleted the text of my earlier reply. I'll have another go, and try to summarise more.

In my early teens I developed ovarian torsion. Very delayed diagnosis meant that the affected ovary became severely gangrenous and was removed. The problem arose in the first place because of a huge dermoid cyst which was also removed.

Dermoid cysts may contain teeth, skin, hair, lung tissue - pretty much anything that cells can grow into. These cysts are also packed with very nasty bacteria, and bursting them during surgery is (these days) strenuously avoided by any properly trained surgeon. Unfortunately, this wasn't the practice back in the 70s when I was going through all this. The surgeon deliberately burst the cyst, flooding my abdominal cavity with the contents of the cyst, because that made it easier to remove. I developed a post-operative infection which was treated with antibiotics.

From then on, I suffered with severe, disabling pain which was originally tied to my menstrual cycle, but it got gradually worse and worse over the following decades. I assumed for years that the problem was caused by adhesions and endometriosis.

I had further surgery a few years ago. Adhesions were removed, and looked for (and found) further afield from where the worst pain was. After surgery I developed pain in new places.

A couple of years ago I had antibiotics for something totally unconnected with any of the above. Streptococcus bacteria had been found in a culture. I was prescribed erythromycin. The effect was like magic. I felt 90% well for the first time in many, many years, and all the pain I had, no matter what part of my body it was occurring in, reduced or vanished.

Unfortunately, the pain comes back sooner or later (usually sooner), when I run out of erythromycin. I've been on several courses of it, but my doctor won't prescribe anything other than the lowest possible dose. I want to fix the problem for good. I am now convinced that the pain I've suffered from for years can be traced back over 40 years to the gangrene and the burst dermoid cyst i had as a young teenager. But I seriously doubt I would find a doctor who would believe me.
 
Gosh, @Arnie Pye, that sounds absolutely awful!

I don't have the expertise to advise you on this. But I did read that lately, people have been challenging the received wisdom about antibiotic use. It used to be that you were supposed to use the lowest dose possible, and finish the course whatever happens. That was supposed to reduce the chances of developing antibiotic resistant bacteria strains. But now I think some medics are suggesting using high doses over shorter courses?

My own experience, which is from recurring bladder infections, is that if I hit them fast (at the first tiny sign of trouble) with a big dose of ABs, I can get on top of the infection quickly, with the lowest possible total quantity of antibiotics. If I leave it for just a few days before starting, and use a lower dose, I have to use it for longer.

This is probably not helpful, but I do think you need to talk to another doctor.
 
I only went on about PANDAS because I suspect that I had it recurrently from kindergarten into adulthood (never diagnosed, never treated, Strep A).

Now that I've read @Arnie Pye 's detailed description, it's probably not very relevant. Carry on. ;):)

And I hope you find answers.
 
Arnie Pye said:
Is it possible to get a bacterial infection as a young teenager and then never lose it during the next 40+ years?
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I have one or two thoughts.

Bacterial infection can certainly remain in tissues for years. Typical examples are tuberculosis in the lung and staphylococci in chronic osteomyelitis. However, I think it would be misleading to generalise from that. These are very specific situations with specific bacteria and specific types of site. Most bacteria do not do this and most tissues do not harbour long term infection.

The microbiome is not an infection. When bacteria live on external body surfaces that is called colonisation. Infection is where bacteria occur within tissue compartments where they should not be. If that compartment is at a surface, as for peptic ulcer and Helicobacter, at least the implication is that tissue is being invaded and damaged.

Dermoid cysts are not normally infected. I am not aware of them being reported to contain bacteria, except perhaps in exceptional circumstances. Most remain undiscovered for years. An operation involving torsion and gangrene is quite likely to be followed by infection but it is not particularly likely that the infection comes from the gangrenous organ. Most infections come through the surgical wound.

Streptococci normally infect tissue in a spreading fashion, producing diffuse swelling, rather than forming pockets of chronic infection. There may be exceptions as for dental root infections but a longterm nidus of streptococci in the abdomen is not a common problem. Also I do not see any reason to think a nidus of streptococcal infection would cause pain anywhere else.

The best known chronic illness following streptococcal infection is rheumatic fever. However, the streptococci are normally eradicated in the first week of the illness. The illness itself is due to sterile inflammation as part of an immune response and, after the first acute phase, from scarring to heart valves. Streptococci are not present at this stage.
 
Hi @Arnie Pye I have abdominal adhesions and diseased fallopian tubes which cause a fair bit of pain. I had a miscarriage, followed by a DNC 25 years ago which gave me an infection - I react to metals, surgical steel included it seems.

The adhesions are sticking everything to everything else down there; my womb, tubes and bowels are all knitted together and tied to the wall of my abdomen. This causes causes me a fair bit of pain, especially period pain. I can't use tampons any more without awful cramping.
My fallopian tubes are diseased because they are blocked by scar tissue. I'm not aware of the tubes themselves causing me pain, but I'm not sure how I'd be able to differentiate between that pain and adhesion pain.

I've also been on antibiotics, Doxycycline, for 7 years now because I get horrible itching, weeping acne rosacea every time I stop. They've also stopped my cystic breast tissue problems which is an added bonus. I have a break from them every now and then but have to start again within 2 weeks usually.

It's ok to post about gynaecological things here on S4ME. Please don't feel awkward about it.
 
@Jonathan Edwards

Thank you for your reply. Sadly, it puts me back at square one, with no understanding of the causes and mechanism behind the pain I get, unless I go back to my previous theory of adhesions and scarring from surgery, post-operative infection, and endometriosis being the cause.

But then I don't understand why erythromycin should reduce or eliminate my pain so well, when I've had other antibiotics which have done nothing. If it was just a placebo response I would have thought it would occur with any antibiotics.

I also find that eating a low-sugar diet, when I succeed in keeping to it religiously (which is not often), helps the areas where I have long-term pain. I had convinced myself that this was because bacteria were feeding on the sugar and multiplying - but from what you say my interpretation of what happens must be wrong.

I got my information on dermoid cysts being infected and causing adhesions within 15 minutes of spillage occurring from a website for surgeons I found once and didn't bookmark - and have never been able to find since. *Sigh*
 
@Liv aka Mrs Sowester

I can sympathise and empathise. My post about the ovarian torsion and its after-effects is only a tiny part of my gynaecological horror story - I've had rather a lot of surgeries. I have no reproductive organs left any more, and I find this extremely distressing. I sometimes tell people that I've been "neutered" or "castrated" or "spayed" and they don't immediately understand what I mean. Doctors, and society in general, think that hysterectomies are no big deal, and since the results are hidden internally there is no understanding of what effects they have.

http://www.hersfoundation.com/effects.html

A little anecdote : I told a gynaecologist about the severe pain I got in the area where the ovarian torsion happened, and about the cyst and the ovary removal.

His comment was a classic : "You can't be feeling pain because there is nothing left there to feel pain."
 
What is it with male gynae doctors telling us our reproductive regions don't hurt?

I was very lucky to have my daughter a year before my miscarriage, but I was desperate to have a second child and tried IVF in 1999. I remember a male technician giving me a vaginal scan to monitor my ovarian follicles and jabbing the scanner from ovary to ovary, it made my eyes water it hurt so much, I said 'oww!' he told me 'that doesn't hurt!'. 'Oh yes it does!' said me.
Then again with the egg retrieval, they gave me the anaesthetic where you're awake, but 'really relaxed'. They collected 27 eggs from my ovaries via a hollow needle through the vaginal wall, I felt pain every time and cried silently through the whole procedure, too drugged up to move or say oww. My ex-husband told them they were hurting me, 'She can't feel anything!' they told him. Another week long infection, pain and vomiting.

Adhesions hurt, no two ways about it and anyone who tells you otherwise is probably the owner of a penis!

I found IVF too traumatic to continue after the second attempt. I over reacted to the meds and I suspect the drugs that shut down my pituitary contributed to my ME onset.

I did have counselling about 3 years ago where I was finally able to grieve for the babies I never had and for myself. It was such an unburdening, I had no idea I was still holding so much pain.
Have you had any counselling @Arnie Pye? You've gone through far more trauma than I have. I know I grumble about my 'pointless cycling' but I'm sure it's nothing compared to the loss of having your womb and ovaries taken from you. :hug:
 
I've been through IVF, and I remember the horrors of egg collection while still being aware of what was happening and also being aware of the pain. When I still had an ovary I developed chocolate cysts galore as well as lots of functional cysts. Each time I did IVF the cysts got in the way and they were drained via the same method as was used for egg collection. Sometimes I had to go through cyst drainage twice in one IVF cycle, as well as the egg collection. I believe that draining cysts this way is no longer done because the risk of infection is so high, but it was standard practice in the 1990s.
 
I remember how they made me feel like a reproductive system with a body attached, you had it so much worse than me @Arnie Pye.
How many cycles did you have? I stopped at two because I felt like I was breaking, mentally and physically.
 
Liv aka Mrs Sowester said:
How many cycles did you have
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Five.

I was utterly exhausted, demoralised and more depressed than I had ever been by the time I stopped. IVF completely dominated my life for about five years. I got pregnant three times and lost all three, so I'm childless. I was told by the IVF clinic that success rates for people with severe endometriosis were very low - I vaguely remember that I was told I had about a 9% chance of having a live birth.
 
Oh @Arnie Pye I so want to give you a hug! To lose 3 babies, that's just so awful.

I'd wanted to adopt, but my ex-husband wanted us to try IVF and at the time adoption agencies wouldn't consider people who'd tried IVF first.
It killed our marriage. When the time came to decide what to do with the remaining 7 embryos I couldn't face more IVF or giving them away and the only thing I could do was have them destroyed. I resented him so much for putting me in that position.

Funny thing is that ME finally stopped my yearning for another child, which was a relief in some ways. But I'm now left with a fear of allowing myself to hope for recovery from ME in the same way that I learnt to fear hope for a baby.
 
@Liv aka Mrs Sowester :hug::hug::hug:

My husband and I decided not to even attempt to adopt. The idea of having total strangers poking around our lives and judging us to decide if we could adopt a child just made both of us shudder. And we were also aware of some failed adoptions where the personalities of the adopted child and the adoptive parents didn't work together at all, so we feared the outcome even given the remote chance we were approved. But in reality we would have failed the vetting process because of all these doubts we had anyway.

That must have been a terrible decision to make with your remaining embryos. I was "lucky" in that respect - I never had enough embryos to have "spares". On one occasion I had one embryo put back. I ended up in hospital with a query ectopic pregnancy because I was in so much severe pain. An obs and gynae consultant asked me "How many embryos were used?" and I said "One - it was all there was." This was at a time when the standard procedure was to use three. The consultant's response to me was "I'm surprised they bothered."

The pain I had turned out to be caused by two large functional cysts - one was 5 inches across and the other was 4 inches across. It turned out I was pregnant in the right place. So I'm glad the IVF clinic "bothered" to put the one back, even though it didn't last.
 
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