How do you know if you have "real" M.E.

[Aerose91]

I've been extremely sick since March but I don't seem to be followig the typical path of this disease. I got hit with what was thought to be encephalitis (never had any flu like symptoms) but that never got officially diagnosed- only based on symptoms. I immediately lost about 50% of my cognitive function, memory and became badly dissociated.

I also developed POTS, neuropathy, screwed up sleeping cycles, headaches, nausea, bright light sensitivity and the biggest one- extreme exercise intolerance. But here's the weird part which no one has been able to explain to me; If I overexert at all it leaves me with permenant brain damage. Every time I have an "episode" after overexertion which may take as long as 4 days to hit me (usually happens while I'm sleeping; bad nerve pain, racing heart, headache, and a severe reduction in brain function) my brain function reduces but NEVER comes back.

I have been on a constant downward slide now for 7 months. Physically my muscles will eventually recover (even tho I'm consistently worse now than I was in the beginning) but my brain never does. Also, it's the same part of my brain that was effected by the initial infection- my limbic system. I am so dissociated and have slipped so far from being able to feel reality that I'm bordering on psychosis. I can't feel time, where I am in the world and my entire life prior to this is so far from me it ony feels like a concept- my brain cant even grasp it.

Anyway- my question is- the one symptom I barely have any of is fatigue. My energy isn't great but it's not too bad. Trust me- I WISH I had fatigue instead of this brain damage. Upon reading stuff about M.E. tho; namely hfme.org and Dr Byron Hydes website it seems that I fit exactly into this criteria: such as overexertion causing permenant disease progression and lack of fatigue. Also, brain damage being the central symptom.

I read tho that "real" ME has to be caused by an enterovirus. I have seen Dr Endlander in NYC and the only enterovirus he tested me for was coxackie and all were negative. I did test positive for HHV6, EBV, Parvovirus B16 and M Pneumoniae. If this is caused by one of these for me and not an entero does that mean I have an chance of recovery from this? My diet is perfect, I lay down all day now and do DR Enlandrs protocol but I still don't get better. I've never seen or read about anyone who's brain symptoms/damage was as bad as mine and progressive like this. Is there any way of knowing which ME I have and if there's any chance of recovery? Because as of now things look very bleak and I'm desperate for some improvement.

Oh and BTW, I had an MRI done which came back clean so I will be going for a SPECT scan next week. My other doctor I saw told me I probably have neuro inflammation which has never gone down and that combined with lack of blood flow to the brain is causing this. Whatever it is I'm living in misery. Can anyone resonate with this?

 

[caledonia]

The Canadian Consensus Criteria is a pretty good definition. http://www.cfids-cab.org/MESA/ccpc.html
See if you think you fit this.

The International Consensus is a further refinement of the CCC. http://www.meassociation.org.uk/201...ia-journal-of-internal-medicine-20-july-2011/

Enterovirus or any particular kind of virus is not required.

Assuming you do have ME and not something else, I've never heard of anyone with permanent brain damage. Even people who are severely afflicted, such as Mary Schweitzer, when they get on Ampligen, recover their brain abilities.

I think what's happening is your overexertion is causing further depletion of glutathione or other nutrients that your brain requires to operate well. I suggest trying to pace and not overexert.

Watch my Methylation Made Easy video series and see if it makes sense to you, as far as a cause and treatment. A lot of us here are trying various methylation treatments and some people are having various degrees of success. The link is in my signature.

 

[Aerose91]

Thank you for that info. What is ampligen? I just started Valcyte recently but have seen no progress yet because hhv6 was suspected to be in my brain.
I do take NAC and lipo glutathione but still have only gone downhill. Based on what u said it seems like everyone you have heard of with this recovers their brain function? I was under the impression that no one with true ME recovers, I sure hope I'm wrong!

And for what it's worth- I had an extremely acute onset. I took 1 pill of phosphaditylserine and about 2 hours later got slammed with all if this. I could tell u when it started down to the minute.

 

[Aerose91]

Caledonia-

I just read your links and I have almost every single symptom. However one thing stands out- the post exertional malaise. Physically I will recover in about a week but my brain does not. Ever. I over exerted in July of this year and I never bounced back even 1% of my brain function- I have only continued to deteriorate. Every time I over exert- even if it's minor my brain function will not rebound.

 

[Seven7]

I have strugle the most with my head, burning, I have balance issues, my eyes rolled back, memory, concentration, finding words, brain forg...
. In my case I think is the HH6 that has caused the most neuro symtoms, the reason I say this is because I am on famciclovir (antiviral) and I have seen my head symptoms improved as my titters keep going down (I used to have coasaxie which was more stomack symptoms, and Parvo wich is more muscle body pain).

I am not 100% ok but my head is Soooooo much clear and I feel my smarts are back as pre-illness.

I also Have OI (POTS like) so I use florinef and Midodrine for that. That helped the head a lot also.

 

[caledonia]

Thank you for that info. What is ampligen? I just started Valcyte recently but have seen no progress yet because hhv6 was suspected to be in my brain.
I do take NAC and lipo glutathione but still have only gone downhill. Based on what u said it seems like everyone you have heard of with this recovers their brain function? I was under the impression that no one with true ME recovers, I sure hope I'm wrong!

And for what it's worth- I had an extremely acute onset. I took 1 pill of phosphaditylserine and about 2 hours later got slammed with all if this. I could tell u when it started down to the minute.

Ampligen is an experimental drug that you can only get if you're in a drug trial and pay big bucks. It's been very helpful for a subset of people, but not so much for others. The FDA killed off approval for it earlier this year after about 20 years of trials and waffling about approval, so it's political and a sore point for many patients.

Some people with true ME do recover, at least well enough to go back to a normal life. They may have to be careful about overdoing so they don't relapse.

If you do recover, the brain should recover too.

In my own case, my brain is a lot better than it was at the beginning. I don't need to take supps for it any more. You could try what worked for me for many years, which is Co Q 10, 100mg. For some, it helps with the brain, for some it helps energy, or it may seem to do nothing. If it does work, you'll know within a few days.

Phosphatidyl serine will lower cortisol. If your cortisol was already borderline low, perhaps it brought your adrenals down further and that's what caused the crash.

 

[Valentijn]

Aerose91
Have you tried spending any significant time laying down? Most ME/CFS patients end up with orthostatic intolerance, and laying down a lot can restore much brain function after a bit.

Fish oil omega 3's, with EPA and DHA, can help with headaches due to reducing swelling. Maybe it can help with cognitive function as well, if swelling is the problem?

Most of us don't really get "fatigue", which really make the "CFS" name a rather bad joke. Post-exertional malaise, orthostatic intolerance, GI symptoms, sleep problems, swollen lymph nodes, etc, are generally part of it.

 

[Aerose91]

Thanks for the response guys.

From everything I've read about "true" ME it sounds like a death sentence in a way. What bothers me the most is that I had 2 periods of overexertion which caused major setbacks to which I have never recovered from at all. Both of which threw my brain function down in a major way and I continue to decline.

Valentijn. I lay down about 22 hours a day, every day. Still no progress. I do get POTS sometimes but not all the time. I wear a HR monitor at all times so I can tell if I'm having OI but it doesn't seem to bother me much actually.

That's interesting to me tho that not everyone here suffers from fatigue as a primary symptom. I just assumed if fatigue isnt a part of this that cfs isn't the right diagnosis which is why I fear ME so much. Since this whole thing started with (probable) encephalitis for me it's been so tough because I have all of these horrible symptoms as well as every symptom of limbic encephalitis (severe dissociation, loss of time, intense apathy and anhedonia, psychosis etc..) so no one has been able to tell me definitively what's going on with me and why the limbic symptoms don't resolve. And yes, I've been tested all over the board for limbic encephalitis.

I have heard various places that if it is a type of PVFS then everyone pretty much recovers eventually. Is that true? I sure hope so....

 

[Aerose91]

For you guys here- do you have a definitive diagnosis of your illness and a definitive cause?

 

[heapsreal]

There is know definitive diagnosis for 'true' ME or for cfs either, they just dont have a diagnostic marker yet but promising biomarkers are generally immune dysfunction such as low nk function which has been known about for along time as in decades but at this stage its not 100% either, in australia they have broken nk function down further into bright and dim nk function and have also found low cd8 t cell function. Another promising test seems to be the 2 day in a row exercise tolerance test(cant recall the actual name for this at moment.

 

[Hip]

I've been extremely sick since March but I don't seem to be followig the typical path of this disease. I got hit with what was thought to be encephalitis (never had any flu like symptoms) but that never got officially diagnosed- only based on symptoms. I immediately lost about 50% of my cognitive function, memory and became badly dissociated.

I also developed POTS, neuropathy, screwed up sleeping cycles, headaches, nausea, bright light sensitivity and the biggest one- extreme exercise intolerance.

And for what it's worth- I had an extremely acute onset. I took 1 pill of phosphaditylserine and about 2 hours later got slammed with all if this. I could tell u when it started down to the minute.

I am right is assuming that you were hit twice: once when you got suspected encephalitis, where you say you lost 50% of your cognitive function; and then you were hit again later, when you took a single pill of phosphatidylserine?

Or did the encephalitis appear at the same time as taking the phosphatidylserine?


I was myself hit with what I think was viral meningitis eight years ago, where I immediately and semi-permanently lost quite a bit of cognitive function. About three years afterwards, I also developed ME/CFS, which further worsened my cognition.

Based on my various symptoms, I suspect the virus I caught that caused my meningitis and ME/CFS was an enterovirus. Enteroviruses are the most common cause of viral meningitis, and are strongly linked to triggering ME/CFS.

Note that testing for chronic enterovirus infections is very difficult, as most commercial blood tests cannot detect them. Only the ARUP Lab blood tests are sensitive enough to detect chronic enterovirus infections. So if you were not tested by ARUP, then your negative enterovirus test results are probably meaningless. In other words, you could still well have a chronic enterovirus infection.

I don't have any long term problems with exertion. After mental exertion I do get some PEM (post-exertional malaise) for two days, but I then recover back to normal. My PEM is mainly caused by mental exertion, not physical exertion.

If your encephalitis/meningitis was caused by an enterovirus, then note that enterovirus infections seem to worsen when you do exercise. So it is best to rest. This is pure speculation, but perhaps there are small islands of enterovirus infection left in your brain, and when you do exercise, these infections flair up again, causing more problems.

Your body may slowly get this infection under control after a year or two.

In the mean time, it would seem prudent to do everything to minimize brain inflammation. There are many supplements that can help to reduce such neuroinflammation. Potent COX-2 inhibitors like propolis 4000 mg, and NF-κB inhibitors like curcumin 1000 mg and grape seed extract 200 mg will help calm brain inflammation. High dose probiotics are also very helpful, since these reduce gut inflammation, which in turn lowers brain inflammation (the vagus nerve communicates any inflammation in the gut to the brain, and in this way, gut inflammation triggers brain inflammation).

My guess is that any damage to your brain that worsens your cognition is caused by the inflammatory response of the immune system. So this is why I think it may be a very good idea to take and anti-inflammatory supplements.

 

[Aerose91]

Hip.

Thanks a lot. This all happened for me at once- I took the phosphaditylserine and that night got hit with the encephalitis which gave way to the ME. I don't know if the ME stated right then or a few days later but it was definately around the same time because it's like I never recovered from the encephalitis.

Is it worth trying to get tested for enterovirus then? And if so is there even an anti-viral for them? I'm on Valcyte now because HHV6 was the suspected culprit but again, there's no proof for anything. I had a spinal tap done and everything came back clean- which is good but bad at the same time.

I have a great anti-inflammatory diet but I will look into those supplements.

How are you doing these days? Healing?

 

[Hip]

It could be that phosphatidylserine played no part in your encephalitis/meningitis, as these brain infections can sometimes just spontaneously arise. In my case, I caught the virus that caused my meningitis about 2 years before the meningitis occurred. It just occurred spontaneously.

This virus I picked up was quite nasty: it gave me a permanent sore throat (that is still with me today, 10 years later), and a chronic sinus infection (also still with me), as well as lots of unpleasant mental symptoms like severe anxiety and anhedonia. You can read an account of the symptoms my virus caused on my website here. My episode of meningitis occurred 2 years after first catching this virus; I think this virus just spontaneously jumped from my throat or sinuses into my brain.

After I got hit with meningitis, the mental symptoms I describe on my website became much worse, and I also immediately lost a lot of cognitive function after the meningitis, mainly in the area of facial recognition, recognition of facial emotions, and in my empathetic skills. The facial and emotional recognition slowly returned after 3 to 6 months, but the loss of my empathetic perceptions seems permanent.


In terms of enterovirus testing, Dr John Chia is regarded as the world's leading clinical expert in testing and treating enterovirus-associated ME/CFS. If you search this forum, you will find lots of info on him.

The two enterovirus tests Dr Chia uses are detailed here.

There is not really much in the way of antivirals for enteroviruses. Dr Chia mainly uses oxymatrine to treat his enterovirus ME/CFS patients. Oxymatrine is not an antiviral as such; rather oxymatrine ramps up the antiviral branch of the immune system, and fights the virus that way. You can buy oxymatrine tablets online, so you don't necessarily need to see Dr Chia to try oxymatrine. I tried oxymatrine myself, but in my case it did not seem to help. It only helps around 25 to 50% of people, Chia found. Again, if you search this forum, you will find plenty of info on oxymatrine.

Dr Chia has also used intravenous interferon to treat his enterovirus-associated ME/CFS patients. This is a very strong and very expensive ($5000) treatment, that often has the side effects of significant depression while you are on the treatment.

I have not been tested for enterovirus, because unfortunately the ARUP Lab tests are not available outside the US.


You mentioned that you tested positive for HHV-6, EBV, parvovirus B19 and Mycoplasma pneumoniae, but you did not say whether your tests indicate you have active infections with these pathogens, or just dormant infections. Most adults test positive for HHV-6, EBV, but it is whether these viruses remain dormant or have reactivated that counts. It is your antibody titers that measure how active or dormant these infection are.

However, I presume that because you have been prescribed Valcyte, your doctors must have seen an active infection of HHV-6 and/or EBV.

Note that enterovirus infections are known to be immunosuppressive, so this might explain why you have high levels of HHV-6 and/or EBV infection.

If you have an active infection with parvovirus B19, this can be treated with intravenous immunoglobulin.


Although my ME/CFS has now stabilized (I no longer seem to be getting worse), I would still like to recover the lost cognitive function that arose from my meningitis.

One possible treatment that I think may help recover this lost function is hyperbaric oxygen therapy (HBOT). HBOT apparently allows neurons damaged in stroke or traumatic brain injury to repair themselves, even if the damage occured decades ago. So I wonder whether HBOT might be useful to repair damage caused by meningitis. An interesting article on HBOT for brain repair is here.

 

[Hip]

By the way, the very worst symptom that my virus caused was super severe anxiety — anxiety so bad that it would often push me into a state of mild psychosis. It took me several years of suffering before I worked out that the anxiety symptoms were driven by chronic brain inflammation.

I then investigated ways to treat this anxiety and psychosis by taking anti-inflammatory supplements. Details of my approach to treating brain inflammation are found on the two threads here and here. The anti-inflammatory supplements listed in these two threads may well be of benefit for you too.

 

[rosie26]

I have had that same kind of anxiety experience with ME @Hip .
In the severe years when inflammation in my brain and body were severe, the kind of anxiety you are talking about was harrowingly severe and I knew it wasn't originating in my mind itself.

It was triggered by the physical inflammation in my brain and body.

I don't suffer from it as severely now, as my ME is more moderate, but when I have a bout of moderate - severe the anxiety symptom shows up. I understand it now, so I know it will pass and just bear it out.

But it was very hard in the severe years as it took me awhile to understand that the anxiety was coming from inflammation in my body, not from the mind itself.