I need help - just left hospital with deadly drug

[Eeyore]

@SOC - My tests indicate no exposure to EBV the vast majority of the time, although I had a questionable test result once (probably false positive, since the vast majority over many years show no reactivity to any EBV antigens). I never had mono either. I am probably not exposed. Generally the tests come back with levels near 0 - not even close to borderline.

I do have HHV6 - mom says I had Roseola as a baby, but it was rather ordinary, not particularly severe or anything, but she remembers it. The doctor diagnosed it. My antibody titers are extremely average for the general population.

I have never had a positive test for CMV - I am almost certainly not exposed.

It is uncommon to not have EBV - probably less than 5% of the population. Almost 100% have HHV6 - and I do have that. By my age, only about 60% of people have CMV (different studies quote different numbers - but lack of exposure to CMV isn't too rare - my sister is CMV negative as well).

My serum globulins are normal, IgG, IgM, and IgA are normal, and the subclasses are largely in normal range too (slight elevation in IgA2 which the doc and I believe to be insignificant, or possibly related to mild gut inflammation). My SPEP is normal as is my serum protein electrophoresis. I have positive titers for HHV-3 (chicken pox virus) in normal range, which I had as a child. My HSV1/2 tests were negative for IgG and IgM - so no exposure. I've never been tested for HHV-7/8.

I don't know why I have fewer herpes viruses than most. Pretty much just 2 - HHV-3 (chicken pox/shingles) and HHV-6. PCR for HHV-6 was negative, so the infection does not seem to be active, and I've never had shingles (not uncommon at my age, only in my 30's).

I seem to produce antibodies normally to vaccines, like Hep B, which I got vaccinated for in college, recently was tested and I am still protected.

Just interesting from the point of view that so many people associate ME with herpes viruses, and that may play a role for some. My ME was probably enteroviral. I got sick in June with an acute onset summer virus, high fever, etc. Based on symptoms and time of year, it was very likely an enterovirus. My PCP back then did a mono test and it was negative too.

 

[SOC]

EBV is a DNA virus and it's a pretty complicated one at that - all the herpes viruses are - and there isn't much strain variability because of the complexity and because it doesn't have sloppy replication. I don't think that's the issue.

Isn't the EBV strain more common in Africa sufficiently different from the one in the US that Burkitt's is many times more common there than in the US and Europe? I've also heard from immunologists that they're seeing Valtrex-resistant strains of EBV beginning to develop in the US as the result of poor treatment compliance in some HIV populations who are (theoretically) taking Valtrex prophylacticly. Maybe EBV strain variation is a bigger issue than we've previously thought.

 

[Kati]

I stopped Cipro, taking Macrobid instead. I just can't seem to handle my physical pain anymore. I can't leave the bathroom due to non-stop diarrhea - sorry for too much information. I can't keep anything down, I can't sit without terrible pain. It is very hard to act like I will get through this. I just opened all my birthday cards from April 30th today May 11th. My stomach pain is unbearable. I look outside at the sunny hot days feeling like I am outside of life.

I thank everyone for helping me out so much. I woke up crying due to my physical pain I have been going through for the last month. I can't bear to have another UTI

@starlily88 sending my best wishes that it does the trick for you

 

[Eeyore]

@SOC - It's not that strains in Africa are more virulent. It's a combination effect of malaria and EBV that usually causes Burkitt's Lymphoma, which is why we don't see nearly as much of it in parts of the world where there is little or no malaria.

There are 3 families of herpesviruses - alpha (HHV1/HSV1, HHV2/HSV2, HHV3/VZV), beta (HHV5/CMV, HHV6, HHV7), and gamma (HHV4/EBV, HHV8/KSHV). alphaherpeviruses are highly susceptible to acylovir (which is what valtrex becomes after you take it - it's modified in the liver). Gamma have some sensitivity, but limited, and very high doses are required. Beta are almost completely immune. The difference in susceptibility has to do with the viral thymidine kinase which converts acyclovir into an active form which is incorporated during replication, but cannot be extended, thus terminating the chain. Human cells do not activate acyclovir.

It's possible that some resistance is evolving in EBV against acyclovir, but it's already pretty resistant by nature. It may be getting even more resistant. EBV can grow pretty happily in people taking normal doses of valtrex which would be effective on alpha herpesviruses.

The concern with valtrex is more resistance developing in HSV1/2 and VZV as these viruses are normally very sensitive to acyclovir. We have observed some resistance in these viruses. Valtrex is not generally considered to be a very effective treatment for EBV anyways, and if a patient presented with severe EBV in the hospital, and a doc wanted to use antivirals, he/she would reach for a different drug, most likely ganciclovir. It's not actually as effective on HHV1-3, but it's much more effective on the gamma and beta viruses. Other options would be cidofovir (vistide) or foscarnet - both of which are quite nephrotoxic, and generally avoided except in dire emergency.

There is a new drug that should be approved soon which will probably be extremely effective (and much safer) against a wide array of herpesviruses, including the beta herpes viruses. It's called brincidofovir - but it's still finishing up late stage trials and seeking approval from the fda. I very much doubt that it will not get approval - it's much better than what we have based on the preliminary data I've read.

 

[SOC]

I don't know why I have fewer herpes viruses than most.

Just lucky, I suppose. It happens.

By my age, only about 60% of people have CMV (different studies quote different numbers - but lack of exposure to CMV isn't too rare - my sister is CMV negative as well).

Yeah, that's not so unusual. Daughter and I are both CMV-negative, although we're constantly fighting reactivations of several of the other herpesviruses.

I was just thinking that having no exposure to either EBV or CMV is uncommon, but it certainly isn't unheard of.

Just interesting from the point of view that so many people associate ME with herpes viruses, and that may play a role for some. My ME was probably enteroviral. I got sick in June with an acute onset summer virus, high fever, etc. Based on symptoms and time of year, it was very likely an enterovirus. My PCP back then did a mono test and it was negative too.

It's likely true that the ME can involve any of a number of infectious agents. I'm not convinced either way that ME has a primarily infectious causation. I think it's easily possible that the root cause is a genetic immune dysfunction that requires a bad hit from some infectious agent to deteriorate into ME. Or it's possible the infections are simply secondary and while they may be the root of many of our symptoms are in no way causal for ME. Or there may be a causal infection. Who knows? There's still far too much research to be done before we can draw any solid conclusions.

 

[Eeyore]

@starlily88 - I'm glad you talked to your doc and got something that works better for you. Macrobid is usually well tolerated. My grandmother took it every day for many years in her late 80's - she had recurrent uti's when she got old - and it worked well and she never had anything noticeable in the way of side effects.

Sorry you are in so much pain, hopefully it gets better soon.

If you do have bad gastro issues, have you tried probiotics? I was a skeptic, but my endo got me to try them, and they helped a lot!

 

[Tunguska]

I stopped Cipro, taking Macrobid instead. I just can't seem to handle my physical pain anymore. I can't leave the bathroom due to non-stop diarrhea - sorry for too much information. I can't keep anything down, I can't sit without terrible pain. It is very hard to act like I will get through this. I just opened all my birthday cards from April 30th today May 11th. My stomach pain is unbearable. I look outside at the sunny hot days feeling like I am outside of life.

I thank everyone for helping me out so much. I woke up crying due to my physical pain I have been going through for the last month. I can't bear to have another UTI

Awful. I was in serious pain for a long time and looking for any way out, except for, like someone said above, probiotics can ease the gastro distress, it prevented most gastro distress for me, so it wasn't so much that sort of pain. On a separate occasion I was on two antibiotics and once and large doses of probiotics prevented diarrhea completely. It was a mix of cheap shelf-stable 5billions and some better ones, handfuls, hundreds of billions a day (away from the abx doses). It's probably not good for CFS/ME but you won't care.

 

[Hip]

I suffered a recurrent UTI that I had had for over 10 years. Antibiotics such as trimethoprim kept the UTI recurrences at bay, but as soon as I stopped taking the antibiotics, the infection would recur (flare up).

I finally was able to keep it fully under control, with no more no flare ups, using an old Roman cure for UTIs: horsetail herb (contains silica), which modulates glomerular function in the kidneys. More info in this post.

 

[AndyPandy]

Thinking of you @starlily88

 

[Eeyore]

Then again, one could argue it's recognized less than it used to be - the clinicians in Ramsay's time, especially in the UK, knew how to diagnose ME and it was in all the neuro texts. Now patients spend years and years going from doctor to doctor, and most eventually self-diagnose via the internet and then go to an ME specialist to have it confirmed, since modern docs are generally not very competent when it comes to diagnoses of serious diseases w/o a lab finding that is conclusive. The old docs didn't have the lab and imaging tech we have today, so they were comfortable making diagnoses based on physical exams, patient histories, and their own clinical experience. That art is rapidly vanishing.

One example is that my hand surgeon (I have carpal tunnel - but not bad) can diagnose you on the spot. He has this cool trick where if he just brushes his fingers against your arm in exactly the right place, it triggers a reflex that makes you lose strength in that hand for 30s or so. He authored a paper on how in a trial it was superior to MRI for diagnosis of median nerve compression, it was obviously faster (under a minute, across his desk in an office), risk free, and far cheaper than an MRI - yet his younger colleagues still order MRI's. In the meantime he's already treated the patient. In my case that was a corticosteroid shot on the spot that cleared it up in days. I've had to go back once in about 5 yrs - so it's worked great for me. Both times his diagnosis was fast and accurate and his treatment was fast and effective - great doc. He's in his mid 70's or so now though, so he is retiring. The younger docs now won't do it - they have to see the imaging studies!

 

[starlily88]

Awful. I was in serious pain for a long time and looking for any way out, except for, like someone said above, probiotics can ease the gastro distress, it prevented most gastro distress for me, so it wasn't so much that sort of pain. On a separate occasion I was on two antibiotics and once and large doses of probiotics prevented diarrhea completely. It was a mix of cheap shelf-stable 5billions and some better ones, handfuls, hundreds of billions a day (away from the abx doses). It's probably not good for CFS/ME but you won't care.

Thanks Tunguska so much for your support. I have been on Garden of Life Ultra Probiotics (2 kinds) plus a Country Life one (Prodophilus?).. I have now "doubled" down on the Garden of Life one that the owner created for his Crohn's disease! Thanks for your great support

 

[Eeyore]

Did they actually find autoantibodies? Did you end up developing organ damage from ME?

 

[starlily88]

Did they actually find autoantibodies? Did you end up developing organ damage from ME?

Yes to first question. Yes to second question.

 

[sianrecovery]

Hi Starlilly

I have experienced many years of urinary tract and renal infections because of a genetic disorder I have - medullary sponge kidney. Like you, and many others, I am now experiencing hard-to-treat, resistant infections. The reality is that many thousands of patients world-wide are now encountering some very tough bugs when it comes to UTI's. I personally developed an allergic response to Septrin in my 20's, which took two antibiotic families off the table. Nitrofugantoin is not a good choice for ascending infections, it doesn't achieve high enough serum concentrations in the kidneys. Cipro, apart from its appalling side-effect profile, is also subject to increasing resistance. There are other choices though, and a decent urologist should be able to pick through them for you. Has anyone suggested a longer term period of low dose, rotating prophylaxis? I have also benefitted from understanding the role of biofilm in UTI - one of the reason these infections persist is that they can lie dormant in the bladder mucosa or tucked into kidney stones in well-protected biofilm niches. Some tactics that have served me well alongside antibiotics are: excellent hydration, taking d manouse, herbal anti-infections, systemic enzmes. Angela Kilmartin also wrote about washing techniques to help reduce infection risk. Don't despair - there will be a way forward.

 

[sianrecovery]

Ps I did a year on interferon alpha and ribavirin to knock out my Hep C - which it did, with the 'side-effect' of greatly reducing my frequent kidney infections and on-going malaise. I thought that was purely due to the elimination of the hep, but over the years, have come to think it knocked a few other pathogens on their arse as well. For a while. Eventually the effect wore off, although the Hep stayed gone. Some people also develop an ME-type syndrome as a result of interferon treatment. It's a fierce experience, or I found it so.

 

[Eeyore]

Not sure if you said this already somewhere and I missed it, but what you are describing sounds a great deal like interstitial cystitis. Have you ever received that diagnosis? The ulcers you describe sound like Hunner's ulcers. There are some treatments but IC is a chronic and poorly understood disease. Many with IC don't have Hunner's ulcers, but they are considered pathognomic for the disease. IC is commonly associated with ME and that whole family of illnesses - my guess is you know all this already but just clarifying to make sure and so that we are talking about the same thing.

You obviously have had some of the treatments with the bladder instillations and such. From what I remember there is a drug they use that can help, elmiron / pentosan polysulfate, although it doesn't help everyone. It takes months to work but sometimes works very well. It is supposed to repair the lining of the bladder. It's taken orally. I don't know if it's expensive. I think they also use benzodiazepines (e.g. valium) and diet modification to treat it.

I think most urologists are useless on these matters. There are specialists though. Just like all the ME-related diseases, most docs prefer to get rid of you than help you. It's very frustrating.

You're also describing kidney stones - do you know what they are caused by? i.e. Did they ever tell you what the composition is? Uric acid, calcium, struvite, etc.?

Another thing that might be worth looking into instead of miralax is Linzess, which is a very newly approved medication (rx only) which is designed for daily use that can replace laxatives in many people. It might be worth trying. It's not absorbed into the body so doesn't have side effects outside the GI tract, and wouldn't end up in your bladder at all.

All the drugs mentioned are rx only so you'd need to discuss them with your doctor (which is a good idea anyways) - especially if you could find a decent doctor who specializes in it.

Most of the time, there is a cause for recurrent bladder infections, although we cannot always find out what. For one thing, you may need to make your urine more alkaline as the bladder is sensitive. This can increase the risk of UTI's though, so while you're fixing one, you're worsening the other. My grandmother had chronic, recurrent UTI's and took prophylaxis for them (she was old at the time, late 80's, but otherwise in good health). She used to drink cranberry juice by the gallon because it makes urine in the bladder more acidic and reduces the risk of UTI's. That's probably a bad idea for you with hunner's ulcers (if I guessed right and that's what they are). Sometimes you end up between a rock and a hard place.

Lots of people have bad reactions to sulfa drugs and it's one reason we don't use them too often. Allergy is relatively common. I haven't had a UTI, perhaps because of age and because I'm male, although I learned a lot about it because of my grandmother (I cared for her for years before she died when she could not live alone as I didn't want to put her in a home) - but if I did, I think I would probably go for the nitrofurantoin over the cipro or sulfas.

Most docs would probably not be worried about prescribing the pentosan polysulfate (elmiron) or the linzess.

There are surgical options for hunner's ulcers I think - but I'm not 100% sure - but you'd have to get a doc specialized in it (and it would probably have to be a urologist, maybe a gyn).

My grandmother had some luck with probiotics designed for women

 

[sianrecovery]

You have very clear and obvious risk factors for infections in both your bladder and your kidneys. There aren't any easy answers with structural abnormalities of this type, but good management helps you stay ahead of the game. Do you have an idea of why you are a stone former? And as Eeyore said - what kind of stones? Whatever their composition, I would seriously think about going low-oxalate, because oxalates can really irritate the bladder as well as form stones in combo with calcium. Also, you need certain gut flora to process them, and after a lot of abx, I guess the right stuff gets kind of decimated. I would also try the kind of anti-inflammatory diet they tend to recommend for IC - avoiding irritants like caffeine etc. I have found herbalists very useful in this process, and rather than aiming for alkalinity or acidifying the urine as end points, I try and move between the two. Sodium Bicarbonate often helps me with bladder irritation. Allicin max, olive leaf extract and lumbroknase in combo with abx also seem to increase their effectiveness. I also recently got a diagnosis of Lyme and babesia - there are a lot of bugs that can live in mixed biofilm colonies - viruses, bacteria, even Protozoa. Hospital acquired infections following catheterisation tend to be some of the most persistent - hospitals are like bug gyms really, where they go to get even tougher. I also find most consultants poorly informed on these topics. If it's just misery, rather than mortality, and you are a middle-aged female....

 

[sianrecovery]

Also - remember fungal infections can present in a very similar way to bacterial infections. Always get them to do a culture. Cultures are a not perfect process, and people can have symptoms without reaching a 'high enough' colony count. If you have had multiple episodes of abx treatment, it's very likely you will need to develop an anti-fungal strategy alongside whatever anti-bacterial stuff you are doing.
I had great results with a herb called kumis Kuching - a Dutch woman gave me some bags of it, saying it had saved her father's life in a Japanese prisoner of war camp when he had a kidney infection. I ran out, and haven't been able to source it since, but it really did help.

 

[Tunguska]

No problem starlily, just hope it calms down. Not a way to live.

My grandmother had some luck with probiotics designed for women

I'm a guy and I got some improvement that appeared to happen after taking probiotics designed for women. Took them in greatest numbers of them all.

+1 to urologists being useless - not (so much) because of FQs but a related story, along the lines of IC but for guys.

 

[Sushi]

Note: a new thread: Are Infections Just a Trigger of ME/CFS, or an Ongoing Cause of ME/CFS? was split from this discussion.