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2 and a half years of hell :( please help

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Chronic Fatigue Syndrome
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Posted 1/20/2009 11:15 PM (GMT 0)
Hello

My name is Paul, I am 22 years old and have been suffering from medical problems for the last 2 and a half years! Before my problems started I was in perfect health, went to the gym atleast 3 times a week and played 5 a side football and had a manual job.

It all started in september 2006 when I went to University, it was freshers week and had drank alot all week. I woke up on the Friday of that week feeling very unwell but put it down to a bad hangover and put my feet up. The feeling did not pass that weekend and carried on so I thought maybe flu or a virus? My symptoms were feeling sick, genrally run down, a swollen throat with white pathes at the back, loss of appatite and stomach pain and then within 2 weeks of initial symptoms I had a discharge from my penis which was a thick white colour and it hurt to urinate etc.

At this point I decided to go to the doctors who said go the the GUM clinic. I went and they said I had NSU so I took the antibiotics they gave me. Within days I felt 100% better and discharge had gone. However within 2 days of stopping the treatment, my symptoms came back. Since then I have taken numerous amouts of antibiotics but now seem to make things worse. I have been back to the docs more times than I can remember and have seen numerous specialists and had every test under the sum done! Been to the GUM clinic 10 times and only 7 of those times have said its NSU but never pinpointed anything.

Over time, other symptoms have developed such as constant phlegm at back of throat, pain in left side of chest and aches and pains down my left arm and left leg. Still got nausea problems which are worse in the morning

My pathetic doctor thinks that it is chronic fatigue syndrome even tho I have never read anything about someone with this constantly having discharge problems for no apparent reason

Tests I have had done are:-

Endescopy

Camera in colon

Camera down penis

barium meal

Numerous x rays

scan of kidneys

My eyes hurt when run down which is basically all the time. I feel depressed by it all, working for a day or being in uni all day really takes it out of me and my throat swells up again and I feel like I have a virus all the time!

Any advice by anyone would be much appreciated. GERD, Chronhs have also been mentioned

 

Posted 1/25/2009 8:49 AM (GMT 0)
You might want to investigate the tick-born diseases if you haven't done so already. The most common ones are Lyme, babesia, and bartonella. Lyme can cause symptoms on just one side of the body, as well as flu-like issues, fatigue, and GI issues. I have also known of people with Lyme that have that white stuff in the throat you talked about. Many patients do not see the classic bullseye rash or recall a tick bite (and still another group won't show positive test results until the illness is "prevoked" with antibiotics).

Not feeling well on the antibiotics could be because they are "stirring things up", but then you aren't on them long enough to eradicate the infection from the body.

Also, some people with Lyme feel worse on antibiotics before they feel better; this is called a Herxheimer reaction.

I think you should check Lyme out. I'll refer you to some websites below.

Sometimes if you've had the infection awhile the tests aren't very accurate. The ELISA test isn't accurate.

I would recommend going to this website, and ordering a kit from them. They send it to your house for free, and then your doctor writes the order for the blood to be drawn.

This is the most sensitive Western Blot test available currently. The website is www.Igenex.com

Call them, give them your address, they'll send you a kit. Ask the person on the phone exactly what you have to do to make sure the kit gets back to Igenex.....if I remember correctly, after the blood is drawn, YOU need to either call Fed Ex and they come to your home to pick up the blood, OR, you can trust the people that drew the blood to mail it off if you want, but everything has to be mailed back in the kit in a specific way, so it's up to you if you want to trust the lab technician with that task, considering you do unfortunately pay out of pocket for the initial test. (sometimes insurance will reimburse)

BUT, if you are desperate, this is the best, sure fire way to rule out Lyme that might not be showing up on the other tests.

At the least, have your doctor run a basic Western Blot on you. I recommend Igenex though, obviously.

I can't really comment on if I think you have Lyme or not, but I think it is an avenue you should explore, because a lot of the times Lyme can mimic other diseases. You will probably run into some doctors that don't believe Lyme can be there if the basic, cheap tests are negative.......but if you want more information on the controversy behind this, you can find that and more by googling ILADS (International Lyme and Associated Diseases Society) or going to http://flash.lymenet.org ....which is down now but should be back up in a couple days.

These are just some things to think about. Babesia also can cause lack of appetite, fatigue, and nausea.

A lot of patients do not recall a tick bite or tick attachment.
Posted 1/25/2009 12:51 PM (GMT 0)
Sounds like Lyme to me too. When you take antibiotics with Lyme, you get flu like symptoms and joint and muscle pain and feel really sick. The dead Lyme is a neuro toxin and until it flushes out, you feel horrible. And this reaction can repeat itself every few weeks. Google Lyme symptoms and you might be surprised how many you have.
Posted 2/10/2009 2:55 AM (GMT 0)
Paul...I have a 23 year old son. My heart goes out to you. He's had some health issues and it's really sad to see him struggle through school. His issues are different, but it's so hard to see a vital young man be so weakened.

I just saw your blog. Have you made any progress? I think the Lyme possibility is worth looking into. Another thought I had was regarding Candida / Yeast. Yeast is in our bodies, but it generally is kept in check by a bacteria... but certain conditions make it so the yeast takes over. Since your problem may have started with a hangover, I thought I'd mention that Alcohol is one of the worse culprits of Yeast. Also, extended use of antibiotics rob the body of the good bacteria that usually kills off yeast. This is why yeast then grows like crazy. it manifests itself in many ways. It settles in joints and muscles. It causes mucus which can explain the mucus in the back of your throat. Also it can cause discharge in men like you've described. Below is a website to look at. There's much info out there. Just google Candida in men or Yeast infections in men. You'll find tons of info out there.

http://www.candidasupport.org/symptoms_men.html

There may be much more going on, but it is very common to have Candida issues simply because of Antibiotics. Many Dr. are clueless to this. I use to have severe Candida. i had a constant cough, worn out joints, phlegm... extreme exhaustion... I have a friend who had constant bladder infections. she was given dose after dose of antibiotics. She'd get better, then sick again.. over and over. Then she started having strange things like swollen feet, joints, mucus, etc.. this was all caused because of overgrowth of yeast!!! And the Doctors never mentioned a word to her about it. If you have yeast, you might not show positive on the other tests you've been given. You need to research this out - you might find some real answers.

Sugar, alcohol, breads - all increase yeast in our bodies.

Hang in there... let me know if you find out anything.
Tracy
Posted 3/12/2009 2:28 AM (GMT 0)

I am 28 years old and had a very similar life style until one day I came down with much of the same symptoms you had. Let me guess - the 'flu like symptoms were in the summer, you got better, but then were never really the same.
Sounds like lyme disease to me. Please let me know if you need a recommendation for a doctor in your area. You can get better, you are young and there is no reason you should feel this bad.

L

Lyme disease often the root cause of Chronic Fatigue Syndrome and Fibro. Please try to see an lyme literate doctor. I think that as more research is done, my guess would be that over 90% of CFS suffers have lyme disease. Right now there is no known cause, but soon we wil find the truth. Please let me know if you need the name of a great lyme doctor in your area.

good luck.

Posted 5/29/2009 7:04 PM (GMT 0)
Hello and thankyou all for your replies. Its been 4 months since I posted on here and im no better. I looked up this lyme disease but it doesnt quite fit with my symptoms. My condition has got worse and I fear my health is deteriating badly! The pains I have have got worse and my whole abdomen is so sore in the morning after being lay down for many hours. I generally feel worse in myself and I cant stand it. I dont know what to do anymore! I changed doctors in November but its not helped. Been to see a rheumatologist recently I he thought possible reiters disease but i dont think so at all! My doc doesnt seem to take me seriously because to someone who doesnt know me I dont look really ill but my family and friends say i look ill all the time!!!
Posted 5/29/2009 7:25 PM (GMT 0)
Please email me for a good doctor.

Post Edited By Moderator (achievinggrace) : 4/29/2015 6:09:30 AM (GMT-6)

Posted 6/1/2009 5:11 AM (GMT 0)
You either have a bacterial overgrowth problem or a yeast overgrowth problem. Starve out either with the Specific Carbohydrate diet, and supplement with a good probiotic.

I experienced fibromyalgia/Chronic Fatigue Syndrome with my current colitis flare. I didn't take any meds, and after three weeks of being on the diet my CFS symptoms and colitis is gone!!
Posted 6/1/2009 7:56 PM (GMT 0)
what is the specific carbohydrate diet?
Posted 6/23/2009 8:05 PM (GMT 0)

blueclassring said...
You either have a bacterial overgrowth problem or a yeast overgrowth problem. Starve out either with the Specific Carbohydrate diet, and supplement with a good probiotic.

I experienced fibromyalgia/Chronic Fatigue Syndrome with my current colitis flare. I didn't take any meds, and after three weeks of being on the diet my CFS symptoms and colitis is gone!!

I went for some kind of breath test about a year ago and I had bacterial overgrowth. Had antibiotics for it but made no difference to symptoms. Could I possibly have colitis? What are your symptoms? are they similar to  mine? Would be good to chat to you about it all if possible

Thanks

Posted 7/28/2009 6:51 PM (GMT 0)
Oggy22,
At the very least, I think everyone on here feels your frustration and fear. It is truly upsetting to have to try to figure this out on your own, particularly while feeling so ill all of the time.

Regarding Lyme, it really is the great imitator, so that's why people have suggested it. It's worth the money out of pocket to get the test doen by Igenex and put your mind to ease about that idea. Or, you might get a positive result and then at least you know what you're up against.

Antibiotics kill off the healthy gut flora and can almost ensure that someone already in ill health will have to deal with yeast overgrowth. It can become a huge problem even if it's not he primary problem. Depression, fatigue, lethargy, pain, etc, all from the toxins that the Candida (yeast) give off.

I'm a big fan of shotgun approaches when one is entirely unsure of what's causing the symptoms. Cast a big enough net and see if you get improvement. For instance, we know for sure that this all started when you became ill with something. It could be that you had strep and that, while fighting the illness your immune system became worn down and hasn't been able to get things back on track. Or it could be that the initial illness was viral (not all white spots on the throat indicate bacterial infections) and that you've been stuck with it for quite some time.

Personally, I would begin some limited trials of Rx-alternative products that will kill off a wide range of viruses, bacteria and yeast and see if you benefit. I think one of the safest and most scientifically-sound approaches is to try Lauricidin first. This is a concentrated form of the antimicrobial, lauric acid, from coconunt milk isolated by a researcher at Michigan State University. Start slow and pay attention for die-off symptoms - a worsening of symptoms due to killing off pathogens - during the first few weeks. If you seem to get even a little benefit from this after a few months (should know within a month or so if you're moving in the right direction) then I would pursue adding a few other substances known, for sure, to boost immune system health. Transfer factors are a solid option but there are others.

In your case, there seems to be clear evidence that this problem involves the immune system at some level - worn down, fighting infections, and so forth. A six month trial of antimicrobials and immune boosters might make sense.

Best of luck and please let us know how you're doing!
Aaron
Posted 4/29/2015 8:32 AM (GMT 0)
Just stumbled accross this again and well, I'm still no better all these years later - it'taken me to the brink :(
Posted 4/29/2015 11:27 AM (GMT 0)
Did you ever look into getting treatment for tickborne diseases? Your symptoms and reaction to antibiotics do point to that as your issue.
Posted 4/29/2015 12:26 PM (GMT 0)
Hi,

No I havent looked into that as the likelyhood is very slim and it's almost unheard of in the UK I believe and I hadn't been to a foreign country for about 2 years prior to onset of symptoms.

Thanks for your reply though

Paul
Posted 4/29/2015 1:25 PM (GMT 0)

eat2bwell said...
The easiest thing to do is try diet. Your body needs vitamins and minerals to be healthy. You can get what your body needs from raw fruits and vegetables. Give up the alcohol, cigarettes, and process foods and give your body what it needs. Your body can repair itself if you give it the vitamins and minerals. One thing will not be able to get from the food is vitamin D. This is the sunshine vitamin and you have to get it from the sun or take a supplement. Get your vitamin D level check to see if you are deficient. Vitamin D is very important for good health. The four things necessary for good health are:

1. Proper diet to get the necessary vitamins and minerals.

2. Proper sleep which allows the body to repair itself

3. Proper exercise which increases the blood flow in the body.

4. Prayer and meditation to relieve the stress.

Stop putting toxins in your body like alcohol and process foods and practice the four things I mention and you can get your health back.

Hi,

Out of the 4 things above I do 3 of the 4 and my condition hasn't improved. I have literally tried everything
Posted 4/29/2015 2:49 PM (GMT 0)
There is more Lyme and other tick borne disease in the UK than you think. The NHS does not recognize that fact, but there are plenty of people finding treatment in spite of that.

This looks like a pretty good site for information:
http://www.lymediseaseaction.org.uk/

Good luck!
Posted 4/30/2015 12:26 AM (GMT 0)
Hello Oggy 22,

Oh my. A lot is being said here.
Overall, I agree with what
Achievinggrace/Forum Moderator has said. Look further into
Lyme/tic borne diseases. You said your symptoms 'don't line
up'. Many times, Lyme can be a clinical diagnosis. Some people
even test negative on the tests and still have it. (I was one of those
people though several bands were positive.) At least start with a
Igenex/Western blot and try to find a literate doctor.
I'm someone who has all three. Lyme, co-infections, CIFIDS,
and ongoing Candida problems. I feel they're all inter related.
By doing the work which I have, I'm so much better than I was
eight years ago. These things can be treated.
but you have to be proactive and persistent in your search
for answers. That's my opinion. Many are treated by naturopathic
doctors or those trained in Lyme.
Good luck with this.
Posted 6/27/2015 2:34 PM (GMT 0)
Wow- tough story. Know that there is a causes or causes which means there must be a cure. Its been a lot of years so I would guess you checked the basics. Here at the two things most people miss and have huge impact on your health-dental and parasites. If you have been sick for that long and havent looked into dental and parasites then shame on your docs. FYI-you are in charge not the docs

Just my experience-when you and your docs cant figure it out its usually dental an parasites and of the two dental is the most important.
Best of luck

Post Edited (magoo2) : 6/27/2015 6:06:36 PM (GMT-6)

Posted 7/29/2015 9:51 AM (GMT 0)
Hello fellow sufferers
here I'm with a broken heart and tears in eyes and with my sense lost i dont even know where to post this all i know is that i want this misery to stop permanently so i can live life again like i did always before all these started 2years ago and I've been suffering ever since. What i can say I've been sick for 2 years i say There are good times and bad times as well but i just never felt right different parts of my body aint working right and i am not in right sense its been 2years i posted in different online groups forums and been to doctors too but as i said it just doesnt stop. Ok lets say what i have. Its endless. Eyes pain feeling sleepy heavy head Theres something in my head i dont feel right to head . Headache off and on . At times my headache is at its worst my temperature goes up red itchy eyes burning sensations . It varies depending on weather. Weather is everything in my life its a very great factor. My symptoms changes as weather changes i feel much better on hot sunny days than rainy damp days although nothing is Perfect but relatively hot sunny days are better my skin itches i sneeze a lot i have asthma . Asthma is getting worse sometimes . My stomach is completely messed up . Diarrhea/constipation for 2years . Different parts of my stomach /abdomen hurt . I feel bad/good before/after eating. I go crazy when i have empty bowel i have panic attack from the stomach gases i burp/fart and do all sort of thing i have pain when urinating . I have dark urine on an empty stomach or on hot days i have muscle twitching jerking pains and a lot more and one thing medicines dont work good on me . I dont know what to do or what else to say. I was much stronger before . Now i have all sort of troubles and anxiety i even freak out on Hiv /cancer and so on i was doing good this year in some months but again collapsed . I live in Bangladesh anyway its a crapty country anyway.
Posted 7/29/2015 9:54 AM (GMT 0)
bro i feel u i am a guy too . We aint supposed to be sick at this early age this is so hurtful and painful. I've been sick 2years and it breaks my heart to see other guys walk past me
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