Will an Infectious Disease Dr. Do???

[alex3619]

Some of us DO have provable and treatable viruses. Those are the ones for which antiviral therapy is viable right now. Otherwise you need a clinic or doctor who runs specific programs to test and treat, and most doctors will not do that. In other words, one of the leading specialists. There is work to disseminate treatment wider from the major research clinics but its slow to expand capacity.

Anyone with acute encephalitis is most probably either delirious or unconscious, and untreated has a life expectancy of about 50% in the short term, as in hours to days. Some of us are encephalitis survivors like I am. However even with encephalitis survivors there is not much in the medical literature, no diagnostic workups, no treatments, and no cure, so far as I can see. Lipkin has identified a subgroup within ME that includes encephalitis survivors but has a more defined cytokine profile. Encephalitis survivors may be where ME was 30 years ago so far as research is concerned. Given that ME is where MS was forty or fifty years ago, this is not a great position to be in. The level of knowledge is almost zero.

To get antiviral therapy with most doctors without actual viral titres is unlikely. There is also very little evidence it helps. The success stories from Stanford seem to be mostly from patients who have provable viral presence. Now with a provable active or reactivating virus that has antivirals available the story can be different, and Montoya at Stanford recently implied the specific drugs that are useful might be useful because of microglial properties, not necessarily as an antiviral. However even at Stanford its science in progress, and we wont see good definitive answers for some time.

Spinal tests also come with risks. Be sure to discuss those with your treating doctor.

There is a lot of work on the molecular basis of PEM right now. It might be cytokine related. Publication is pending, and until then we wont know for sure.

 

[Daffodil]

The problem with viral infections is you need viral titres, not antibody titres, to establish infection in the thoughts of sceptics. There is no mainstream treatment for enteroviruses, including Coxsackie that are firmly established. EBV on the other hand is treatable if its an active infection or a regularly reactivating one. So I would not bother getting viral titres for enteroviruses, but it might be worth it for EB viruses. The main issue here is that at best most doctors will only prescribe short term antivirals, weeks to months. Stanford is getting results from antivirals continued for at least five YEARS.

wow! is this correct? 5 years?!?! I didnt get results until i was on antibiotics for 4 years. lol it looks like you can just take any old pathogen killing drug and get results if you take it long enough lol wtf

i remember many years ago, coming across a testimonial online from a woman who claims she was so sick they diagnosed her with non-HIV AIDS. then, she took Valtrex for 5(?) years and everything cleared up!

guess i shouldnt be surprised....its not like anything ever made any sense with this disease

 

[picante]

and Montoya at Stanford recently implied the specific drugs that are useful might be useful because of microglial properties, not necessarily as an antiviral.

I'd like to read more about that. Is there a discussion or an article? Thanks, Alex.

 

[picante]

Anyone with acute encephalitis is most probably either delirious or unconscious, and untreated has a life expectancy of about 50% in the short term, as in hours to days.

I was delirious. Not sure whether I was unconscious -- I was living alone 'cuz the roommate was gone for the summer. It was 5 days before someone got me to Urgent Care, where they threw antibiotics at me. I wonder what the survival rate is for acute EBV meningitis. It was mostly the first 3 days that I was delirious; it started to let up on day 4, but I still couldn't keep much water down, let alone any food.

Lipkin has identified a subgroup within ME that includes encephalitis survivors but has a more defined cytokine profile.

Are they sampling blood or CSF for the cytokine profiles?

Spinal tests also come with risks. Be sure to discuss those with your treating doctor.

Yes, thank you.

 

[picante]

Encephalitis survivors may be where ME was 30 years ago so far as research is concerned. Given that ME is where MS was forty or fifty years ago, this is not a great position to be in. The level of knowledge is almost zero.

This is really shocking. Especially when you consider that some of us have something transmissible.

 

[alex3619]

Are they sampling blood or CSF for the cytokine profiles?

My understanding is both, though in different studies, but blood seems to work now that they know what to look for. This information should be available after publication. Stanford recently published something, but only one cytokine is elevated, and one lowered, but many more rise as severity rises.

PS. I was referring to Stanford, Lipkin's methodology I no longer recall. I suspect just blood.

 

[alex3619]

I was delirious. Not sure whether I was unconscious -- I was living alone 'cuz the roommate was gone for the summer. It was 5 days before someone got me to Urgent Care, where they threw antibiotics at me. I wonder what the survival rate is for acute EBV meningitis. It was mostly the first 3 days that I was delirious; it started to let up on day 4, but I still couldn't keep much water down, let alone any food.

That might indeed mean you were a meningitis or encephalitis survivor. I wish there were more I could say. I do know that in surveys about 70% cannot work full time, and 40% cannot work at all. Its not clear what pattern this follows, disease progression etc., due to lack of epidemiological studies.

The symptom list, which I have misplaced I think, is about the same as for ME but with no mention of PEM, and they added anxiety and depression to that list, which I am hugely sceptical of. Sick people can show up as sick on tickbox methods because the symptoms of illness are included in depression questions. Also anxiety might simply be from being unable to get a proper diagnosis or medical care, or even social support.

In classical terms, modified by more recent care such as antivirals, the death rate was about half, and half the survivors had severe brain damage ... but the half remaining magically got away with no damage, no problems, nothing to see here. Many of those wind up with a CFS or ME diagnoses, but again we don't have numbers because nobody has looked at this.

 

[picante]

That might indeed mean you were a meningitis or encephalitis survivor.

As with most things, I figured this out 20+ years after the fact. I wrote a summary of my illness that I give to all my doctors. It starts with my acute-stage mono symptoms:

June-July 1992 Infectious Mono. Age 35

• Raging, excruciating sore throat, white stuff at back of throat
• Vomiting – I couldn’t keep even water down
• Fever - 103° or possibly higher, since I was in a state of →
• Delirium
• Neck pain
• Light sensitivity
• Full-body rash
• Slept 20+ hours/day for the first 5 days; spent 6 weeks mostly in bed
• Day 5 got amoxicillin (?) from Urgent Care (no results), Day 10 got erythromycin from Urgent Care (still no results), Day 12 I insisted on a mononucleosis test. It was positive.

I threw away antibiotics per doctor's order. Post-illness, my activity level was 50% of normal, or less. In my case, "normal" included hiking, X-C skiing, figure skating, several kinds of dance, teaching at the university, volunteer work, and outdoor jobs in the summer with the Park Service or BLM. Now I'm at less than 5% of that, and my translation income is approaching zero.

 

[alex3619]

I had measles encephalitis in 1968, age 7. This was reported to me by my parents, as I have close to no memory of the event, only that there was a time when I could not wake up. From time to time I looked at the literature, but found little. I keep reporting it on my intake medical answers whenever I have to do that. Nobody has been interested. Then last year Lipkin found the subgroup with stable cytokines, and this group includes encephalitis survivors.

So I re-ran an internet search and found a UK survey which listed symptoms ... my symptoms. Post exertional relapse was missing, and anxiety and depression were there, but these symptoms were the common symptoms ... not everyone had them. I also wonder how they would pick up on PEM in a general survey.

Since then I have found a small number of other papers, but nothing outstanding.

The best hope is to push ME research. This might be just a variant, or it might be slightly different but share mechanisms. In any case the investigative techniques in ME may be useful. I do fit CCC and ICC criteria, so these criteria are selecting at least some encephalitis survivors.

I am also not even close to only ME patient who has had encephalitis. I know of at least two others on this forum.

In my case I joke I had the other ME, measles encephalitis. Since the symptoms are ME symptoms I am treating it as ME for now.

By my count there has been many decades of ignoring the problem in medicine, probably over half a century, and maybe much longer than that.

 

[picante]

. I keep reporting it on my intake medical answers whenever I have to do that. Nobody has been interested.

There are a lot of things doctors aren't interested in. Such as blood pressure plunging into the 80s/50s.

Then last year Lipkin found the subgroup with stable cytokines, and this group includes encephalitis survivors.
So I re-ran an internet search and found a UK survey which listed symptoms ... my symptoms.

That must have been a huge moment for you.

I also wonder how they would pick up on PEM in a general survey.

Yeah, I didn't pick up on the lag time after exertion for two decades. I kept thinking my symptoms (neck spasms, nausea, headaches, vomiting) were triggered by hormones, while other symptoms were triggered by eating (neuro-visceral pain, meteorism, drugged-brain state).

I do fit CCC and ICC criteria, so these criteria are selecting at least some encephalitis survivors.

So do I. I look like a textbook case of the ICC criteria, of moderate severity, but I'm not missing much on that list.

 

[pamojja]

I had measles encephalitis in 1968, age 7

Had a meningitis after an mumps infection 7 years of age too. Measles around that time, but don't remember if before or after. Have absolutely no situational memories of childhood before age 10. However, didn't have any ME/CFS symptoms in my youth or as young adult.

 

[alex3619]

However, didn't have any ME/CFS symptoms in my youth or as young adult.

I had inexplicable mild fatigue as a kid. I thought it was just one of those things ... you know, the bad throwaway line, everybody gets fatigued. It was a very mild problem in my late teens, a bigger one in my early twenties, and ended my full time work history by my late 20s, though extreme muscle pain played a part too. I think it gets worse over time, and it appears to get worse after each major infection or physical trauma. Its what I call staged onset, rather than acute or gradual.

Five years ago I was in hospital for a broken leg and had a titanium support implanted. Due to a variety of issues they kept me there for nearly two months. I also discovered I do not tolerate the blood thinner Clexane, which is a heparin variant. Then the real fun started. My serum ferritin went on a vertical climb, my blood sugar did too. Physically and cognitively I went into decline, and became a much less active advocate for ME. I started a search for answers, but really slowly as I could not travel.

I even tried a hospital specialist, but they thought CFS and ME were jokes, and kept trying to find other issues. Then they ordered two tests which are actually dangerous for me, and both of which cannot lead to treatable findings given my other health complications. I gave up on them.

Then I started Metformin with a private doctor, who I could only get to see because I was not wasting energy on the hospital, and my energy was on a slight increase. This was a disaster ... I was aware of potential problems, but more worried about my blood sugar. My left foot, below the ankle break, went black. The skin on my leg fell off. I developed multiple ulcers. The last of those only healed a couple of weeks ago, it took about four months.

Now my ferritin is normal and my blood sugar is almost at my long term level. Now I am classed as a diabetic, and for the last several years I had very high blood sugar, though not as high as some diabetics. I had always been atypical, that is I qualify for diabetes by technical measures, but don't generally get other blood results like a diabetic. My glycosylated haemoglobin, for example, was always almost normal except for the last year or two.

I actually think I am probably not diabetic as its usually understood, I just get caught up in a diabetic diagnosis. Now that they are looking at diabetes as possibly five or six different diseases, I wonder if I am in those subclasses or something else. Indeed Ron Davis has been quoted as saying that the metabolism of ME looks a lot like diabetes. I wonder if this is just another ME complication. In any case my blood sugar is almost back to normal, and I am hoping it will go that way .. but I still fulfil a prostprandial diagnosis of diabetes.

The point of all this is that we are highly atypical, whether we have ME or are an encephalitis survivor, or are both. Doctors do not do well with atypical. This is a problem for them as about one in five patients has complex disease issues.

The other cautionary tale is it took me five years to really start to recover from surgery.

 

[picante]

Its what I call staged onset, rather than acute or gradual.

That's a more neutral term than the one I invented (ratcheting down of metabolic function).

 

[picante]

Then I started Metformin with a private doctor, who I could only get to see because I was not wasting energy on the hospital, and my energy was on a slight increase. This was a disaster ... I was aware of potential problems, but more worried about my blood sugar. My left foot, below the ankle break, went black. The skin on my leg fell off. I developed multiple ulcers. The last of those only healed a couple of weeks ago, it took about four months.

Was the Metformin episode relatively recent? It's a horror story.

 

[picante]

I actually think I am probably not diabetic as its usually understood, I just get caught up in a diabetic diagnosis.

The point of all this is that we are highly atypical, whether we have ME or are an encephalitis survivor, or are both.

I actually think I am probably not hypothyroid as it is usually understood. It's the damn infections causing my thyroid metabolism to ratchet down (via RT3) to keep me alive. And the immune system going on the assault with TPO antibodies up in the 1300-1700s.

 

[alex3619]

Was the Metformin episode relatively recent? It's a horror story.

Yes, the end of last October, with the last ulcer healing last month.