Discussion in 'General ME/CFS Discussion' started by RedLineBoy, Jul 26, 2013.
You can check for yourself pretty well with a blood pressure monitor and/or heart rate monitor.
I wonder how it can be for sure when there is no reliable test to exclude it.
I asked the doc about what he's thought was regarding me having encephalitis. He said no. Also said encephalitis is usually accompanies meningitis, in most case.
I need to find another doctor. I wish I had financial support to constantly search for new doc or pay for all the visits.
You know how I know my current doc is a dum? Is because I asked him if I can get a medicine to keep these virus at bay and he said no medicine exist to treat cmv and ebv..wrong...Valcyte....He would not prescribe such med.
It's clearly becoming to know that CMV and EBV are causing majority of the symptoms.
CMV and EBV burn in hell. It's ruined my life forever.
I apologized if I sound like a little whinny kid, but I can't help knowing that my life is what it is. I'm losing faith in everything. I couldn't never get my mood start..Matter of fact I have no idea how I will feel tomorrow. Every freaking day is different.
I disappointed to hear about the uselessness of your doctor. Why on earth is he not giving you disability if you have solid proof of an ongoing infection?
I don't understand them.
Re: POTS, NMH, OH
I also suggest buying a blood pressure/heart monitor. They aren't expensive.
There is thread here on it with more links inside:
I am sure there must be more on the web.
For POTS alone I think it must be a rise of 30 beats on standing from lying down. It's quite simple to measure at home.
In addition you can try taking your blood pressure during the dizzy spell, write it down and then compare it to blood pressure when you feel well.
With respect I also am wondering if you have ME or something else undiagnosed because you do not mention PEM and your hours and job sound longer and harder than what most ME patients can manage. So that is why I am suggesting taking the blood pressure yourself. Maybe it will give you more of a clue to what is going on and more serious evidence to give to your doctor. He sounds almost as bad as the ones that neglected me.
I forgot to say. NMH and OH are defined differently to POTS. I can't remember how. But they are all done by using the blood pressure/heart rate checker while standing or lying down. They are all simple to check on your own.
Most of us have been through that. Sometimes dozens of times over years. It's hard to find good docs who know something about the ME/CFS, OI, etc
The difference is that NMH and OH are diagnosed by the blood pressure and POTS is diagnosed by what the pulse (heart rate) does.
One important thing I can say to that is to do not go and randomly seek out doctors (thats almost a sure way to waste money, energy and time), make sure you get patient recommendations from others who see doctors for the issues you have.
I was unfortunately young when I got this illness.. in my 20s and doing collage, I pushed too hard to get throu my course throu the illness and ended up bedridden for 9mths, having to be cared for by my own very young child as I couldnt even walk to a toilet.
I did get an opportunately to work when I had an remission for 2-3 years after several years of being very ill. As due to the ME I'd never graduated from my 4 year diploma, instead I got into doing stable work, gardening for people and also got a job with a care agency doing housecleaning and carework for the disabled/elderly. I also for a while had a full time job looking after a quadruplegic bedbound guy but quit that after 6 weeks as that guy was truely horrid to people (mind games, threatening to have his dogs killed etc.. he was horrific to work for).
When I crashed into this illness again after being completely free of it for a while, I had to cut my agency work back more and more. I never cut it back enough (I also had a gov agency pushing me to work more hours), so ended up on a slow downhill slide over a year or two, till i could only work 6hrs a week and then finally I was even struggling to do 1hr per week. My specialist ordered me to completely quit my job at that point. I loved my work, it was so hard to just quit, my boss too had been exceptional and emotionally supportive as I struggled and let her down over and over again, she did all she could to help me.
I do good in my life now and carry self value by helping others eg in sites such as this and by doing advocacy when Im ok enough to do so. If you loose your job you need to find other things to help you feel good about yourself and to still feel like you have value.
No not necessarily. You could have just some viral issues and something like dysautonomia which can be caused by viruses. Dysautonomia can get light headedness, concentration issues, memory issues, fatigue and headaches. Dysautonomia can make someone need to lay down during the day eg take a nap. There are other things too other then ME/CFS which also can give those symptoms, usually it takes seeing MANY of the right doctors before everything is tested for and ruled out.
From the things you've said, I too really query that your CFS diagnoses is corrrect (half of those with CFS probably cant work at all and you are currently doing a physical job full and seeing you said you can study too and get As, that too isnt normal for a CFS person). So I wonder if you could in fact be completely curable if you found the right doctor. (CFS or ME usually isnt curable but in your case, you could have something else).
I hope this is not too much off-topic but I just have to say this thread makes me relieved.
I've been reading all around about people working part-time and taking airplane rides half-way across the world, and going out to bars and claiming they have ME/CFS.
I still have not mourned my career, and probably never will, but even with trying (and failing) all kinds of symptom relievers from ICC Primer the most I have to look forward to is being able to take care of the basic hygiene on my own. I really felt like even people with ME/CFS don't get how sick I am.
But here I see I'm not the only one who had to give up everything.
Misery loves company
There also an immune condition (it may involve the NK cells.. ME too can involve the NK cells but it isnt the only illnesss), I cant think what the other is called (hopefully someone else will bring it up) but it can cause you to not be able to fight viruses properly and may give your symptoms too. Its a rare thing which only a good specialist probably would diagnose.
orthostatic intollerance is something most doctors dont know a thing about and you will need to see an automonic specialist or another specialist who is familiar with this condtion for.
Nope.. just taking salt is usually not enough for most of us who have an OI issue. I myself have an OI issue (like yourself I had bad mono/EBV as a teen). Due to my OI I not only just have to take salt and drink lots of fluid but I also are on two different prescription meds to help my blood volume issues of the OI and also have to wear medical compression stockings as well.. and my OI in my case still isnt being controlled well (I probably need IVs or something for it or a far higher dose of the OI meds).
(I also carry CMV. I havent found a good doctor to treat any of my reactiving viruses unfortuantely so in my case still looking.. I also get reactiving herpes. Im a clear ME case fitting the International ME criteria. Those with ME have more then just a handful of symptoms, I get over 90 symptoms. "the average total number of symptoms experienced by each patient some of the time (18.6 symptoms" ) http://wwcoco.com/cfids/bernesx.html ME/CFS is really one heck of a big bad illness.
Some here on having their OI treated, who hadnt been able to work before, they've managed to be able to now work.
Im going to second this post as its so important. IF you do have ME/CFS, it is very important not to put yourself in any kind of job in which you will have to work at your poor times or if you start to deteriorate, find yourself a job in which has flexiable hours in which you can cut back on if need be. Due to work committments, that is how most of us ended up severe with this illness. If you are lucky enough to have an abnormally mild case of it, dont put yourself into a situation where you are going to be playing russian roulette with it. When Im taken out shopping (this illness has affected me so much that I cant drive a car like many here), I have to use a wheelchair.
Pushing is how I ended up bedbound for 9mths..not even being able to walk to a toilet. That is how I also ended up back with this illness badly after I'd had a remission from it, trying to meet work commitments. If I hadnt been trying to do that maybe I wouldnt be where I are today with it. Nowdays I cant even look after myself due to it (Im only 42 years old) and hence have home support carers who have to come in and look after me. I cant even do my own dishes and struggle to just cook.
My case isnt abnormal but is the case for many of us here. Your case (how much you are able to work etc) is highly unusual.
One of the main differences is that with NMH (Neurally Mediated Hypotension, aka, Neurocardiogenic Syncope and other names) the main problem is a large drop in blood pressure. The patient's BP can start out either high or low. The problem is the drop of 25 points or more in the systolic pressure (top number).
Also, there can be a fairly long delay, maybe 20-40 minutes of standing, before this big drop happens. Symptoms will start before then, at maybe 5 minutes or so, but you won't see any big drop in BP before then.
Patients can have either type of Orthostatic Intolerance -- NMH, or POTS, or both. And one last point is that different medical experts sometimes use slightly different terminology, e.g., Chronic Orthostatic Intolerance and so on.
Here are a few links for anyone interested in OI information:
Research 1st article (CFIDS Assn of America)
(has links to the 2010 webinar by Dr. Rowe)
Johns Hopkins CFS/OI Handout
Article on OI by Dr. Stewart at emedicine.com
POTS Place (patient web site, also has NMH/NCS info)
I hope this is helpful!
RedLineBoy - you said you live in PA...have you been tested for Lyme? If not, please find a LLMD to consult with. PA is smack in the middle of the growing northeast US Lyme hotbed and all of your symptoms could be attributable to it, including the poor NK function and elevated viral titres. Just a thought.
I just came back from giving blood for whole bunch a test my doc wants to do. One of them is lyme test so well see what happens. He's also going to check for CMV and EBV titre.
I know my issues started all after contracting CMV and EBV at the same time. I know exactly how I got it too (kissing). I also know that in four to six weeks afterward I was sick, pretty bad. I recover from most symptoms except the ones i am currently going through. I'v been going through for last 10 years so I'm not sure if it can get any worse.
So correct me if I am wrong here. So my symptoms can become worse than what they are right now if I push my self? I've been dealing with these issues for 10 years now. I think I push my self a lot in those ten years. So I should cut down?
I've heard of dysautonomic before it was from my pulmonologist when I used to have shortness of breath. He did bunch a test and said its probably my autonomic system. I was told to relax and take deep breath and eventually that would go away. In fact did for few months then it returned. I still have breathing issues here in there. Kind of like I need to stop and take a deep breath once a while.
So I was thinking today should I approach each symptoms by taking meds specific to those symptoms. For example, if I have headaches then take Topamax, if I feel fatigue then take Nuvigil. I'm not sure if this is a good idea too.
My biggest symptoms are;
Headaches, light headed feeling, fatigue, lack of concentration, short term memory issues, mood swings. I tried all kinds of vitamins, nothing works to its fullest.
I will post my blood work in couple of weeks. Hopefully, you guys can analyze my ebv and cmv results....
At this point I have no choice to work. I need to pay bills.. I might hold up on the idea of going to school. I just thought my life would have been different. I wanted to do something in life. To be honest with you, my family thinks I'm lazy...My wife yesterday told me that I am the most laziest person she has ever met. That really made me feel like crap.
Stuff like that makes me feel like I need to push my self and become something of my self, but I just can't...My body just wont.
What do I do? I don't have a supportive family.
Have you returned to your pulmonologist since the breathing issues returned? Since s/he helped you once, s/he might be able to help you again.
And yes, if you have ME, your symptoms could become much worse. Cutting back until you have determined what your health issues are would probably be a good idea. Learn about pacing.
I'm really sorry to hear you family aren't supportive - that really stinks.
Can you show them what you have been writing here? You've been opening your heart to us, total strangers, we can feel your despair and frustration - perhaps if your family could understand that too, they'd see that it's not "laziness".
Not having their support is not good for your health; family is about supporting each other through the bad times as well as the good.
If you've been pushing yourself for the last 10 years, have you noticed at all that you have been going downhill?
If it was ME you have, you would have been getting PEM and/or getting worse and worse the whole time from that.
Have you had your heart properly tested?
I know now of two people whose ME/CFS was "cured" by the fitting of a pacemaker.
They had heart troubles all along, it never was ME/CFS.
Now that I think about it I do feel health issues going down the hill in last ten years. I think what really makes it worst is stress. I know if I stress about anything for a while I start to get headaches and sleepy feeling with fatigue.
What I've been noticing recently is Monday are start of all fatigue and not feeling feel then by Wednesday I'm feeling better with clarity. By the time sunday roles around I start to feel like crap again. So few days are good and few days are worse. But, nothing that keeps me bed bound or anything..Just headaches, fatigue, lack of mental acumen.
I have been to cardiologist who tested me for everything. Everything looks great according to him. Mind you this was back in 2009. I got CMV and EBV back in 2003. It gave plenty of time for both of these virus to cause damage that I would assume show up on cariod and neuro test.
MRI, EKG, EEG, CT Scan, Dizzy Test ( Where they put water in your ears and check for balance), Endoscopy, Sinus test, and all usual blood test. Every darn thing keeps coming back normal. Except, CMV and EBV.
I been to every specialist that can help in last few years, I just don't have funds any more to go through the cycle again.
My pulmonologist said nothing that he can do except that I should relax when I'm having breathing issues.
Hopefully, in few weeks my doc will review test results and refer me to someone appropriate until then I am thinking that I should address the symptoms by taking meds.
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