Hello

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Hello
« on: August 18, 2008, 05:48:11 PM »
[deleted]
« Last Edit: March 24, 2014, 08:02:47 PM by melikespi »

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Kathy11

Re: Hello
« Reply #1 on: August 18, 2008, 10:25:56 PM »
Hi Melikespi.
Welcome to the forum.

I would suggest you go to your doctor to have blood tests to adjust the electrolytes deficiency,

Find a therapist that will assist you in learning how to manage your life to minimise the stess.

you also need to start paying close attention to your dietary  intake because it plays a big part in maintaining god health and stability in your life.

The key to all the above is to research and learn, about the best way, to live a manageable life with thal Minor, It's not easy but it's possible.With  good management of this condition you can enjoy and live a fulfilling  life .

goodluck. this site is a good start for learning and friendships, It has changed my life I hope it will be the same for you.
Dont hesitate, we are all friendly and we will do our best   good luck.
Kathy

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Offline ak82

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  • 19
Re: Hello
« Reply #2 on: August 19, 2008, 10:51:05 AM »
Hi there friend.  I feel pretty much exactly the same.  Im looking for answer here too.  If you find any, let me know :(

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Offline Bigg

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  • 82
Re: Hello
« Reply #3 on: August 20, 2008, 02:02:50 PM »
Hi James,

As I wrote in this thread a minute ago

http://www.thalassemiapatientsandfriends.com/index.php?topic=1817.0

I also have neverending flu, and recently I also had attacks of shingles...
This is clearly immune deficiency. Of course tests for all "common" viruses were negative - HIV, HBV, HCV, EBV, so I have to look for the cause of this immune deficiency elsewhere.
I think the primary cause in my case is a complete drynes of throat, mouth and nose. Viruses and bacteria enter throat and nose and there is no mechanical defense (mucous), so the immune system has to deal with the infection and another and another...
This of course causes strange things to happen - immune system gets weaker, can't fight new infectons, so it gets weaker - and the result is that it finally gives up.
So in my case giving up meant shingles, in your case mono...

I have noticed also another strange thing. The dryness started around 2004, but about 2 years earlier I stopped having really high fever. Now when I'm ill I only have 37 degrees C tops, and usually during flu I do not have any fever at all. Do you have similar symptoms?

Weak immune system can be caused for example by stress and high cortisone levels, and stress can be caused of course by tiredness and exhaustion due to thalassemia...
I was somewhat tested for hypercortisolemia, but when I did closer investigation, I found out that this test was not done correctly, ie. it did not account for all the possibilities. Testing cortisone levels is quite tricky. Of course this is only one of many possibilities, but I'm just trying to give you some hints guys, where to start - so first testing for all the above viruses, then hormones and then... I don't know - any idea?

In the meantime how do you stop the vicious circle of flu-weaker immune system-flu ...?
I started taking megadoses of vitamin C (5000 mg). It causes immune system boost. It also causes
sores in my throat to heal, so one of the mechanical defences is rebuilt.

I also read that lauric acid, capric acid and caprylic acid can be helpful when dealing with different viruses (like mono); they are fats and just dissolve virus envelope. Some studies were performed:

http://jds.fass.org/cgi/content/full/88/10/3488
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1352223

Here, testimonial about mononucleosis.
http://www.coconutdiet.com/viruses.htm

Vitamin C worked for me very well. Caprylic acid, well I can't really tell, because I started taking it, but not frequently, and besides I found out that monolaurin is even better at this...

http://www.diagnose-me.com/treat/T167021.html

There are lots of other pages describing, how this works (google: caprylic mononucleosis, monolaurin mononucleosis)

So, that's all I can think of for now. I hope that one of these remedies will be effective for you, and let me now if it is or not (especially that monolaurin if you decide to use it).

Regards
B.

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Offline Prets

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  • 211
Re: Hello
« Reply #4 on: November 10, 2009, 10:15:29 AM »
I know this is an older post, but I wanted to write anyway. :-)

I also have started experiencing this mouth and throat dryness, and very frequent allergies/infections - sore throat, cough cold, low grade fever etc. This has been happening 5 times in the last few months.

At times i am even completely unaware of the infection - but i get very sick with symptoms i cant explain. I start to rub my arms/body like i have no blood left in me. My BP is usually low at 90/50 so i dont relate it to anything.

Finally we figure out its a throat infection (no pain or noticeable discomfort or fever), and the i am better right away with antibiotics.

Sipping water frequently doesnt help at all, i still feel dehydrated, and i can even feel the insides of my throat to be very dry each time i breathe. I also start licking my lips at such times by habit. (that doesnt help either).

One reason could be that i mouth breathe a lot due to chronic sinus problems, but i feel the mouth dryness is worse only when i am tired (which is always), regardless of whether my nose is blocked or not.


I also noticed that i rarely ever get high fever. Earlier i would get 104 fever immediately after any allergy to medicines. But when i'm very sick even with a viral infection or really bad cold/throat, I get a maximum of 100 degrees.

I also feel 'fried' very fast even with usual daily activities. My body is usually warmer than most people. I noticed this by chance when i realised that every single person i ever hug feels ice cold to me! :-) This is the case even when I am at my normal body temperature of 98.3 degrees.

Any thoughts?

:-)
Symptomatic Beta Thal Minor.

 

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