good sign??

[Nabo]

hi everybody

i have a question.
I am now almost 3,5 years sick from ME.
But i am never sick.

I started treatment with De meirleir 1 year a go.
Now i am so sick!
Everything hurts and a sore throat and i have a cold and have to sneeze the whole day.

So i think maybe it is a good sign?? Because my immunsystem is overactive and now i became sick??

I really dont know.. all i know is that i am feeling so sick i hate it

 

[justy]

Hi Nabo, sorry to hear that you are going through this right now.
I am also interested in this question and have been thinking about it a lot lately. I am the opposite to you, in the beginning i had one infection after another and caught every single virus and cold and gastric bug that was going - this went on for a couple of years (during my latest 3 year relapse) this last year i dont catch anything or if i do i just feel a little bit ill for a few weeks whilst everyone around me is getting very sick. I thought at first that it meant my immune system was strengthened and working well to clear bugs but now im not so sure. I have young children at home but i never seem to get ill.

I know that the disease progresses in different ways and i know that this immune over and underactive thing is important but ill have to leave that to someone else to explain.
All the best, Justy.

 

[Nielk]

Hi Nabo,

It's only a guess but, I think that you answered your own question.
Before, your immune System was overactive so it blocked all pathogens from invading your body.
Now after a year of treatment, your immune system is becoming more steady and is allowing
these colds in. But, I think your best bet is to ask Kenny De Meirleir to be sure.

It seems like from past threads here on the forum that patients fit into one of the two categories.
They either don't catch anything. (like you did before) Or, they catch everything.
It must have to do with the state of the immune system.

 

[taniaaust1]

Its kind of tricky thing. With ME it is said that ones immune system often swings one way and goes TH2 dominent (if you havent heard of this try searching TH1/TH2 CFS).. in this state one often dont get colds but at the same time we get more trouble with certain viruses when the immune system is more on the TH2 side eg EBV, CMV etc.

So maybe it is helping balance your system more..so its hard to know if it is a good thing or not. When we get a sore throat.. means our bodies are actually trying to fight something off (so it can be a healthy immune response).

 

[Sushi]

hi everybody

i have a question.
I am now almost 3,5 years sick from ME.
But i am never sick.

I started treatment with De meirleir 1 year a go.
Now i am so sick!
Everything hurts and a sore throat and i have a cold and have to sneeze the whole day.

So i think maybe it is a good sign?? Because my immunsystem is overactive and now i became sick??

I really dont know.. all i know is that i am feeling so sick i hate it

In the early years of "being sick," I caught everything--colds, flu all the time. Then for more than 10 years I caught nothing, never got the flu or colds. Now, with treatment, I am beginning to catch things again. It is only a guess, but I think this is a good sign of the immune system getting regulated and starting to do its job again.

Best wishes--I know you are feeling bad!
Sushi

 

[Nabo]

thanks everyone for your response! great!

Ok.. so it might be a possitive sign? i really really hope so!!
Yesterday i even had a little bit an elevation of temperature above my regular temperature. And i never have that!!!

About the th1 th2, many me cfs patients have low th1 and high th2.
Mine results where the opposite, i have high th1 and low th2.

De meirleir told me that just a very small group of ME patients have this.
He told me that i am the crohn/MS type of ME.

Sorry for my bad english.

 

[Athene]

Dear Nabo,

I started feeling worse and ill when I started treatment with KDM and it just kept getting worse and worse and worse.

What you have described could be a sign that your immune system IS beginning to react to infections instead of "ignoring" them. Or it could be a sign that you are having an allergic or intolerance reaction to some medication you are on.

If you want to list all the meds you are taking, I could tell you my experience with these meds, and that might help you to figure it out.

Since changing doctors, I HAVE been through the reawakening immune system experience. The most important signs for me were:
Fevers when I had a cold or flu (hadn't had fever for years)
Reduced allergic reactions (i.e. far less intense) as the immune rebalanced between the TH1 and TH2 reaction, and focused on what it actually did need to fight
infections progressively ending in less time than before (if you have not had any reaction before, then you'll need time to watch if this is how you are progressing)

For me I realised it was all wrong when it was clear I had cold and flu symptoms practically all the time and the slightest hint of a dust mite would almost suffocate me! KDM had me avoiding the sun to reduce my vitamin D level, whereas vitamin D is am immune rebalancer: Without enough, the body is literally unable to mount a response against infections and is stuck in a state of readiness for heightened allergic reactions. Now I take a D supplement and the change is very positive.

 

[Nabo]

it is not an allergic or intolerance reaction to some medication, because that feels so different.
It is reallt a cold/flu. But dont have a fever, never.

what kind of treatment do you follow?
And how did you restore the balance of th1 th2?? What kinds of meds did you take?
Can you tell me more about it??

Thanks

 

[snowathlete]

I think its a good sign, in so far as any change has the potential to be a good change. No change is...well...no change.

I dont get sick either, and everything my wife or child gets sick i hope i catch it, but it never seems to happen.

I figure that if there is something wrong with the immune system, then having an infection might cause it to reset, or something? So, very interested to see how you get on, make sure you keep us updated!

 

[Athene]

Hi Nabo,

I'm taking vitamin D, which is essential to rebalance to Th1 and Th2 response.
I also take vitamin A, which is so fundamental for the immune system that Vitamin A deficieny is classified as an immuodeficiency disease. You need A and beta carotene together (Kirkman is ideal)
I also take zinc, high dose Vitamin C of course, and vitamin E.

This article is excellent as an intro to everything I've been talking about:
http://my.clevelandclinic.org/disor...et_exercise_stress_and_the_immune_system.aspx

BTW snowathlete,
I am convinced when your family gets sick you ARE cathing what they have, you just don't realise it because your immune system is not reacting. The germs lurk in you and do far more serious and subversive damage, that you don't know how to identify as a cold or flu, for example. All the symptoms we associate with specific infections are cauesd by our immuene reaction, not by the actual pathogen.
EG If you catch a cold and your immune system does nothing, it can get in your heart and give you myocarditis without you ever sneezing of blowing your nose.

 

[snowathlete]

BTW snowathlete,
I am convinced when your family gets sick you ARE cathing what they have, you just don't realise it because your immune system is not reacting. The germs lurk in you and do far more serious and subversive damage, that you don't know how to identify as a cold or flu, for example. All the symptoms we associate with specific infections are cauesd by our immuene reaction, not by the actual pathogen.
EG If you catch a cold and your immune system does nothing, it can get in your heart and give you myocarditis without you ever sneezing of blowing your nose.

Interesting, yes you could be right. So you think we catch it but our immune system doesnt react to it, so they just stay in us and cause damage?
I had thought before that maybe our immune system was so high that when an infection comes in its obliterated at once, whereas usually it gets a chance to spread and then the immune system ramps up short term to get rid of it. But maybe thats not it. Its a scary thought that we may not be responding to these other viruses at all. Eekk.

 

[Athene]

Hiya,

Some people with CFS (and some who just have super-duper immune systems, like my husband) get high speed colds. They do go through all the symptoms and stages of a cold as it progresses, but incredibly fast. And it seems logical to me that these people have a very hyped up immune system, ready to pounce on anything.
My son used to be one of these, and blood tests always showed his innate immune system operating at levels five times the normal maximum.
So you are right that some PWCs do have a permanently Ready For Action immune system, but it is not able to function invisibly, because that is impossible.

The innate immune system means natural killer cells etc, which attack literally any alien DNA found in the body. If it works properly, it reacts very rapidly - that's why, if you cut your finger on something very dirty, it will be (should be) red, hot and throbbing within minutes.
Nobody's adaptive immune system can kick in in uder 4 days - this is when normal healthy people go into the latter stage of a cold, form antibodies which make sure they will not catch that particular cold again, and completely eliminate it from the body. The innate immune system holds to fort till then and, if it is very strong, the adaptive immune system comes along and finds nearly all the work has been done already.

 

[justy]

What i really notice the most for me now is that i do get a very very low level of whatever my kids have but i dont get properly sick. Instead i feel unwell (more than usual) for ages, never getting propely sick but never shaking it off either. The exception is stomach bugs which i never had at all as a child (iron stomach) now i get them all the time but they linger and linger for weeks. Everyone else in the family gets very sick for a couple of days and then better whereas 2 weeks later i still have mild stomach ache and feel dizzy.

Justy.

 

[snowathlete]

Some people with CFS (and some who just have super-duper immune systems, like my husband) get high speed colds. They do go through all the symptoms and stages of a cold as it progresses, but incredibly fast. And it seems logical to me that these people have a very hyped up immune system, ready to pounce on anything.
My son used to be one of these, and blood tests always showed his innate immune system operating at levels five times the normal maximum.
So you are right that some PWCs do have a permanently Ready For Action immune system, but it is not able to function invisibly, because that is impossible.

The innate immune system means natural killer cells etc, which attack literally any alien DNA found in the body. If it works properly, it reacts very rapidly - that's why, if you cut your finger on something very dirty, it will be (should be) red, hot and throbbing within minutes.
Nobody's adaptive immune system can kick in in uder 4 days - this is when normal healthy people go into the latter stage of a cold, form antibodies which make sure they will not catch that particular cold again, and completely eliminate it from the body. The innate immune system holds to fort till then and, if it is very strong, the adaptive immune system comes along and finds nearly all the work has been done already.

So as I dont get a thing, that means that my immune system is off completely? Surely those cold viruses and so on, would do more harm though and i would see some sign off that?

 

[mellster]

There is not an easy answer to this and I caution to come to conclusions prematurely. For example there are people who get sick a lot with all typical cold/flu symptoms, and it is believed that this is not a sign of a good immune system. Also there are people who catch colds and have minor symptoms only as they quickly get over it before there is too much virus replication and those are believed to have a good immune system. The "normal" range is wide and likely can go at least from one cold every 2-3 years to 2-3 colds per year. Only proper testing can tell you more and even serology immune function testing is limited in the information it can provide. cheers

 

[Nabo]

I think its a good sign, in so far as any change has the potential to be a good change. No change is...well...no change.

I dont get sick either, and everything my wife or child gets sick i hope i catch it, but it never seems to happen.

I figure that if there is something wrong with the immune system, then having an infection might cause it to reset, or something? So, very interested to see how you get on, make sure you keep us updated!

Thanks for response.

I am now 1 week sick and it is getting better. My troath feels better.
I really hope it is a good sign! cant remember the last time i had this.
Dec 5th back to KDM.

i really hope that i feel better in the next few days, so that i can sleep normally and the flu is gone!

 

[Athene]

So as I dont get a thing, that means that my immune system is off completely? Surely those cold viruses and so on, would do more harm though and i would see some sign off that?

Hiya,
I think the sign of the cold viruses is generally feeling grotty and tired all the time. A lot of damage they can do takes ages to show. The common cold is caused by any one of some 200 different viruses, including rhinoviruses, adenoviruses, influenza viruses, para-influenza viruses, syncytial viruses, echoviruses, and coxsackie viruses. So you could catch a cold from someone and just add it to your list of chronic viral infections, never knowing that it was the same thing that just made them sneeze for a week.
I had a blood test a year ago which showed I had pneumonia, there was no coughing, it was just quietly damaging my lungs and heart and mitochondrial cells, apparently.

 

[snowathlete]

Hiya,
I think the sign of the cold viruses is generally feeling grotty and tired all the time. A lot of damage they can do takes ages to show. The common cold is caused by any one of some 200 different viruses, including rhinoviruses, adenoviruses, influenza viruses, para-influenza viruses, syncytial viruses, echoviruses, and coxsackie viruses. So you could catch a cold from someone and just add it to your list of chronic viral infections, never knowing that it was the same thing that just made them sneeze for a week.
I had a blood test a year ago which showed I had pneumonia, there was no coughing, it was just quietly damaging my lungs and heart and mitochondrial cells, apparently.

Blimey, thats pretty scary!

Hi Athene, thanks for your answer. So, in our situations, blood tests are the only way of knowing if you have something that might be causing damage i take it?

Thanks for response.

I am now 1 week sick and it is getting better. My troath feels better.
I really hope it is a good sign! cant remember the last time i had this.
Dec 5th back to KDM.

i really hope that i feel better in the next few days, so that i can sleep normally and the flu is gone!

Hi Nabo, i really hope this is good news for you and that you improve along with the end of the virus. Good luck!
What is KDM by the way?

 

[Sushi]

What is KDM by the way?

KDM is Dr. Kenny De Meirleir in Brussels.

Sushi

 

[Athene]

Hi Nabo,

How are you doing? Better I hope!

Snowathlete,
Yes I think blood tests are the only way to be sure. Trouble is, you cannot test for hundreds of things. If you are lucky enough to find a doctor with a lot of experience with immunocompromised patients, they can spot the signs of certain infections and narrow it down. I think there are also certain viruses that are particularly troublesome if you harbour them long term. Old KDM in Brussels found about 4 of them and my current doc found another three.

My current thinking on this is that it is better to reinforce the immune system rather than take antivirals, which have variable success. I've had definite improvement but not spectacular results so far. At least my immune system does react, I get fevers again now after not having one ever for about 6 years.

I hope that is basically the same change that is happening to Nabo!