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Old 02-11-2005, 08:09 AM   #1
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whats going on?

hey everyone,

I've been ill for around 15 months now, ive posted on these boards before (not this one but the inner eat one). My illness started with a virus at a time when i was stressed out with work, relationships etc. I also smoked some Cannabis (which i had a very very bad experience from) with my friend around the time too (he also strangely got ill 2 weeks before me - and is still ill, but not quite as bad as me - he can work, go out, smokes, drinks etc - just like a normal person). Anyway I never had time to rest at the time, and then WHAM, in November 2003 i was KO'd for around 10 days. It started with dizziness driving to work on the friday, i played football on the sun and that night i felt like i was going to die - and that is no lie. The next day i tried to go to work, but had to come home early, when i got home i couldnt move from my bed. I was totally exhasuted, dizzy, spaced out, confused, had tingling in my neck and head, was sensivite to light, vomiting, racing heart beat. The worst of it went after around 10 days, but i was left with this very bad fatigue, dizziness, mental confusion, lack of ability to concentrate, sensitivity to light, extreme spaced out feeling - like i didnt know what i was doing and even where i was at times.

My doctor said that i had had a dose of viral labyrnthitis, and that i should be ok after a while. Anyway the feeling never went, so i went to see an ENT (eyes, nose and throat specialist). He said that it looked like i had some kind of virus, and it was nothing to do with my ears as my balance was pretty good - after doing a few of the 'stand on the spot' exercises. I was referred to a neurologist - who said i had had a virus, i had many blood tests and a MRI brain scan. They all came back fine. Anyway it as now Jan 2004, i had not been able to work for and the specialist told me to try and get on with things to get back to normal. So i tried, building up from just walking 5 mins or so each day. I tried going into shops and places, but i got terrible dizziness and anxiety, and i just couldnt do it. At this point i was forcing myself to do these kinds of things, as i wanted to get back to normal. After about 2 months, i was getting no-where and went back to the neurologsit - who said that i didnt have ME/CFS and that the virus could take quite a long time to go. He sent me back to the ENT just for some more checks. The ENT sent me for balance tests, which all came back normal too.
In the end i was referrred to a rheumatogist(spelt right) who diagnosed me with CFS. At this time i was still very ill, but i felt like i was improving very very slowly. I was sent to a physiotherapist in June 2004, who set me off on a graded exercise/activity regime. Getting up, going to bed at the same time, setting rest periods throughout the day (NO sleeping, just resting), 1 hour on the pc - increasing the time every 2 weeks, i also started off by doing 2 ten mintue walks each day for 2 weeks, then increasing the exercise by 2.5 mins. Anyway after around 3 months i got up to doing 2X25 minutes of walking every day and was at 2 hours on the PC. Then in October i fell ill again, with what seemed like the same kind of virus that started it all off in the first place. I was gutted. The worst of it lasted around a week again. The physio started me off again at the beginning on my exercise regime and i worked my way back up to 2X25 minutes around christmas, but i felt like i was over-doing it again and am now just doing 2x10-15 mintues. Since November 2004 i just feel like that i am not getting anywhere. I cant tell if i am any better or not. I know that i am getting more depressed as time goes on, as i have really good days, where i do not over-do things, but the fatigue/spaced out feeling/brain fog/headaches/depression/anxiety/bad memory/frustration/inability to concentrate still comes back. I cant figure out a pattern to it. Im trying to keep to a pattern of rest/activity everyday and it does make me feel slightyl better - but even on good days the symptoms are still there in the background waiting to pounce on me.

I recently went to see a Cognitive behavour therapist as the bad experiences i had of going to shops etc in March 2004 had given me a slight phobia of going out to places - it helped slightly - but whatever is causing my symptoms of dizziness/anxiety/fatigue is still there, so until these go away then the problem wont be totally solved.

I also get this pain in my stomach - which the doc said is due to too much acid. I get bad wind too. I have taken 4 months worth of anti-acid tablets but it keeps coming back.

I also sent my hair to a woman in Wales - who apparently can tell whats going on in your body by testing your hair. She said that i had a virus and that it was still lingering in my body. She has put me on lots of herbal remedies - which make me feel a little brighter - but nothing considerable has happened. I have now been taking the supplements for around 3 months.

Anyway its now Feb 2005, and im getting really depressed. All i do is sit at home all day, exercise and rest, try and see my friends. But im always too ill to do anything. Im not even sure if this is an inner ear disorder, a virus, thyroid gland problems, bad depression/anxiety, CFS/ME - i just dont know. I have never really researched into any other illness, so i am posting here to see if my story is similar to yours, to try and get some answers. Can anyone relate to my story? Please help.

regards jonathan

 
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Old 02-11-2005, 08:28 AM   #2
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Re: whats going on?

I will answer this in parts: I don't want to sound like a old fogey but about the pot: The people who grow this stuff are like all farmers around the world, spraying it with pesticides for bugs. Some people are very allergic to pesticides. I believe thats a good thing myself as it keeps you away from that cancer causing stuff. Some people are allergic to pot you may have either just developed an allergy or it could be the type you smoked. It sounds to me like you have NOT done it again so there sounds to me like other issues at work here. You need to be tested for autoimmune diseases such as Lupus, RA ect.... I don't know if you have been tested for Lyme or Toxoplasmosis but your symptom's suggest you should be. Do you have a cat or a bird? Those 2 animals can spread certain illness to people (don't feed the pigeons LOL) Has your thyroid been tested? Read up on this site and see just what the symptoms of thyroid disease are. At the risk of sounding like your Mother I just have to say one thing though. When you smoke pot you are taking a huge risk, a lot of that stuff is grown by terrorists, they can put any chemical, biological thing on it that they want. Unless you know who grew it and if it was grown organically then don't buy it. Hope you feel better soon and please check out the Fibromyalgia CFS site on this board.

 
Old 02-11-2005, 08:44 AM   #3
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Re: whats going on?

hey there, thanks for you reply.

I know it was a stupid mistake and i wnt be doing ever it again. I have always thought that it was something to do with that as my friend got ill from it too which had worried me all along.

where can i arrange these tests? i've had had the following blood test done already:

blood film examination
c reactive protein
full blood count
glandular fever screen
glucose
plasma viscosity
thyroid stimulating hormone
viral screen
biochemisty profile
immunology(?) test

regards Jonathan

ps i dont have any pets

Last edited by jonathanp; 02-11-2005 at 08:46 AM.

 
Old 02-11-2005, 08:52 AM   #4
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Re: whats going on?

What you need is a good doctor. I know you don't want to hear this as its probably been already told to you, but you may very well have an anxiety disorder.

To rule this out first of all, I would like to see a total blood workup including CBC (blood count) CMP (metabolic panel), full thyroid panel, cholesterol panel, catecholamines, ACTH, DHEA, cortisol, prolactin, full thyroid panel, magnesium, ferritin, B12 (methylmalonic acid), glucose, IGFI, Testosterone (free & total), Tissue Transglutamine (test for wheat allergy and Celiac disease), Folate, Homocysteine, Hemoglobin A1C (3 month glucose), Helicobacter pylori Ab (IgG) -tests for stomach ulcers, Cardio CRP (C-Reactive Protein for heart attack potential), ANA Test - ANTINUCLEAR ANTIBODIES - Tests for Lupus and liver disease, Uric Acid, ALT, AST for liver function.

I know it sounds like a lot of stuff, but its really only a few vials of blood and if you have something strange going on in your system and you cannot isolate it, these tests will for sure, rule out tons and tons of potential candidates and if the results are normal, your anxiety might subsude knowing you are going to live to like 112! I believe everyone should have one of these "super tests" at least once or twice in their life. In addition to figuring out what's wrong with you, it also gives doctors a good bench mark for future health problems if soemthing should come up....they can say, hey, his A1C was only 4.8 2 years ago and now its 6.8....without the benchmark of tests while you are most likely healthy, they have nothing to compare to in the future and believe me, when these tests come back and you find you are healthy afterall, your mind becomes at ease.

 
Old 02-11-2005, 08:58 AM   #5
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Re: whats going on?

Ok that would rule out toxoplasmosis unless you have been eating dirt in the garden LOL! Have you ever been around ANY farm animals or petting zoo's since before this started? What was your TSH and when they did the immunology tests did it include Lupus. Do you live or have you been in an area where there are tick's?, if so where?
Your regular Doc can run the Lyme test and most others also. You might just have to come clean with your Doc and explain about the pot. As I don't know what country you live in this may or may not be a problem. It worries me that you and your friend have symptoms that are the same and started at the same time. You might write to the Lyme board on this site also if there is a chance that it could be it. You two did not go walking in the woods together or anything did you?

 
Old 02-11-2005, 09:04 AM   #6
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Re: whats going on?

Quote:
Originally Posted by nastyhashi
What you need is a good doctor. I know you don't want to hear this as its probably been already told to you, but you may very well have an anxiety disorder.

To rule this out first of all, I would like to see a total blood workup including CBC (blood count) CMP (metabolic panel), full thyroid panel, cholesterol panel, catecholamines, ACTH, DHEA, cortisol, prolactin, full thyroid panel, magnesium, ferritin, B12 (methylmalonic acid), glucose, IGFI, Testosterone (free & total), Tissue Transglutamine (test for wheat allergy and Celiac disease), Folate, Homocysteine, Hemoglobin A1C (3 month glucose), Helicobacter pylori Ab (IgG) -tests for stomach ulcers, Cardio CRP (C-Reactive Protein for heart attack potential), ANA Test - ANTINUCLEAR ANTIBODIES - Tests for Lupus and liver disease, Uric Acid, ALT, AST for liver function.

I know it sounds like a lot of stuff, but its really only a few vials of blood and if you have something strange going on in your system and you cannot isolate it, these tests will for sure, rule out tons and tons of potential candidates and if the results are normal, your anxiety might subsude knowing you are going to live to like 112! I believe everyone should have one of these "super tests" at least once or twice in their life. In addition to figuring out what's wrong with you, it also gives doctors a good bench mark for future health problems if soemthing should come up....they can say, hey, his A1C was only 4.8 2 years ago and now its 6.8....without the benchmark of tests while you are most likely healthy, they have nothing to compare to in the future and believe me, when these tests come back and you find you are healthy afterall, your mind becomes at ease.
thanks ill try to get my GP to get these done. Is that good enough? Or does it require someone else to get them done?

i dont really trust the NHS here(UK).

i must say that i dont think i purely have an anxiety disorder - i think whatever illness i have, inner ear, CFS, lyme etc, the symptoms i get from this illness definately make me get anxious. I dont think that all these symptoms are from purely anxiety. Plus ive had therapy for the anxiety - i know how to cope its just i feel too ill to go anywhere half the time.

 
Old 02-11-2005, 09:18 AM   #7
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Re: whats going on?

Jon, Do you have Lyme in the UK? I had a feeling you might be there. To tell you the truth I don't think your anxiety disorder is causing this, but could be a symptom of this. . Your symptoms would make anyone anxious and I get the feeling you are pretty young. (don't know why) Your living in the UK brings up questions such as: Have you been out of the country before this started? As for the inner ear troubles thyroid disease can cause it but so can Lyme so back to where we started.

 
Old 02-11-2005, 09:29 AM   #8
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Re: whats going on?

i went to New York in March 2002, i got ill in Nov 2003. But it was a sudden onset (viral - so the doc say) - about 1-2 months after smoking the cannabis.

what is lyme disease?

i am 22 (23 in May)

 
Old 02-11-2005, 09:32 AM   #9
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Re: whats going on?

Quote:
Originally Posted by jonathanp
i dont really trust the NHS here(UK).
Me neither! It can be really hard to find a GP willing to do all the tests listed here. My latest idea was to make the doc feel good about herself (saying that the consultant confirmed her diagnosis of CFS and that wasn't it good that there was nothing wrong with my thyroid? etc.) and I requested a couple of tests, backing it up with 'it would put my mind at rest' to have the tests done. What do you know? Two days later a form is ready for me to collect with all the tests on it!! Just play the doctor's game. I found to my cost (£140 of it) that private consultants don't appreciate patients coming in with ideas of what could be wrong and tend to class you as mentally ill in that you want something wrong with you, rather than actually being ill (which is more likely).

kiya

 
Old 02-11-2005, 09:37 AM   #10
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Re: whats going on?

Quote:
Originally Posted by kiya
private consultants don't appreciate patients coming in with ideas of what could be wrong and tend to class you as mentally ill in that you want something wrong with you, rather than actually being ill (which is more likely).

kiya
i know its a shame they think like that. We just want to find out what the hell is going on - im sure they'd be the same if they were ill for so long

 
Old 02-11-2005, 09:41 AM   #11
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Re: whats going on?

Lyme disease is a tick borne illness, symptoms start about 2 weeks to many months (even years) after being bitten by a tick (this disease is in New York..) If you went out walking in the country in a area that has a lot of deer then I would get tested. These ticks live on the deer but can jump off on to humans and bite them. The disease was first discovered in Lyme Conn. and has been found on most of the eastern seaboard of this country. It is NOT catching from human to human as far as I know. One of the first symptoms can be a red bull's eye type rash but not everyone gets the rash. If you were bitten by a tick or even if you were just in the woods in NY where there are ticks I would suggest a lyme test. Your regular Doc is the one to ask for this.

 
Old 02-11-2005, 09:51 AM   #12
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Re: whats going on?

Just looked it up and YES you have Lyme disease in the UK also, there are some good websites about it on the www. Please understand though that there are many things this could be, I assume you have had the test for Mono, that is very prevalant in your age group here in the States. The reason I hit on the Lyme was you do have a lot of symptoms of this. There are 2 tests available the Western Blot and ELISA. These are not conculsive tests though. Best Wishes For you Returning Health!

 
Old 02-11-2005, 10:11 AM   #13
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Re: whats going on?

ive was in Manhattan - never went to any woody areas.

Never got a rash or anything like that

is mono the same as glandular fever??

 
Old 02-11-2005, 10:36 AM   #14
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Re: whats going on?

Yes, I just looked it up. So you have been tested, I see you are now on the Lyme and Lupus sites, Good for You! The people on both sites are really well informed. Really doubt anyone ever got Lyme in NYC, but since its in the UK who know's? I seen a post to you about EB not sure what that is but you ought to do a little research on that one also. Have you been to the CFS/ Fibromyalgia site on this board yet? That is where I started I was having much the same symptoms as you are and a Rheumy diagnosed me with Fibromyalgia, he did a TSH (thyroid stimulating hormone) and had to back off the Fibromyalgia diagnosis because my TSH was 7.9 too high. I was put on a higher dose of Synthroid and guess what the Fibromyalgia is gone!!!! I would ask your GP for a Free T3 and Free T4 if you want to pursue the Thyroid thing. What was your TSH? I see you had it done. Get copies of those labs and post them here. I am not a numbers person, but there are 2 or 3 people on this site that are. PS they will need the ranges along with your numbers.

 
Old 02-11-2005, 10:42 AM   #15
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Re: whats going on?

Quote:
Originally Posted by Benzi
Yes, I just looked it up. So you have been tested, I see you are now on the Lyme and Lupus sites, Good for You! The people on both sites are really well informed. Really doubt anyone ever got Lyme in NYC, but since its in the UK who know's? I seen a post to you about EB not sure what that is but you ought to do a little research on that one also. Have you been to the CFS/ Fibromyalgia site on this board yet? That is where I started I was having much the same symptoms as you are and a Rheumy diagnosed me with Fibromyalgia, he did a TSH (thyroid stimulating hormone) and had to back off the Fibromyalgia diagnosis because my TSH was 7.9 too high. I was put on a higher dose of Synthroid and guess what the Fibromyalgia is gone!!!! I would ask your GP for a Free T3 and Free T4 if you want to pursue the Thyroid thing. What was your TSH? I see you had it done. Get copies of those labs and post them here. I am not a numbers person, but there are 2 or 3 people on this site that are. PS they will need the ranges along with your numbers.
yeah ive been to the CFS pages on here before. The thing is CFS can mimic so many different illnesses - and if the doc's dont find anything they just label you with that.

I need to have the full whamy of tests done, and then ill settle for thier diagnosis if the tests come back clear.

how can i get copies of those labs i ahd in November 2003??
These were done by a specialist not my general doctor (GP)

 
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