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Old 02-11-2005, 08:01 AM   #1
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jonp HB User
whats going on?

hey everyone,

I've been ill for around 15 months now, ive posted on these boards before. 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, 09:02 AM   #2
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mletters HB User
Re: whats going on?

Hi Jonathan,

All I can say is 'Ditto!'. This is EXACTLY the same as my symptoms. Mine started 16 months ago with dizziness when leaning forward, then the 'altered state of conciousness', brain fog, mental confusion, tinnitus (ringing in the ears), TMJ (jaw problems), anxiety (now big time with panic attacks), depression (reactive obviously!), changed sleeping pattern (first couldn't sleep at all), now sleep 11-12pm until always 06:00 (wakey wakey!) every day! I used to be the best sleeper ever!.

As you describe, I too have done the rounds of GP's, specialists including ENT, Neurologist, Rheumatoligist (probably not spelt correctly!), Clinical Immunologist, Maxillofacial Consultant, Psychotherapist, Phsychiatrist etc.etc.etc.

First of all it started off as a dx of Viral Lab. Then as time went on the dx was changed to ME (by clinical immuno) and ME/Lymes disease (by Rheumo). I did improve after about 4-5 months and led a pretty symptom free Summer and then WHAM!, Sept/Oct Symptoms returned again and are still with me. It's like my Brain has been taken over. I get pressure behind the eyes/forehead, spaced out/brain fog, dizziness (feels like I'm going to pass out at times), Anxiety/Depression and panic attacks.

I know I'm not able to give a diagnosis but just thought it might help to know that you're not going nuts!, and are suffering a real, genuine condition (I hate to use the word illness!).

Things that have helped me have been Accupuncture and Accumassage, Ginko Biloba (to reduce the tinnitus and increase blod flow to the brain - also for Brain Fog?), and a regular routine. I also take Mag/Calcium, high strength B vitamins and drink 2.5 litres of water per day.

I am getting another Brain MRI and also one of the neck soon as I am suffering big time with neck pain, eye pressure/pain, focusing problems, and ear pressure (always feel the need to pinch my nose and releave pressure (Valsalva Maneuvur I think its called!).

You may also want to have an ASI (Adrenal Stress Index) test done. This is done by measuring your Saliva Cortisol level over 4 periods in a day. It tell's how much Cortisol/DHEA is in your body (Cortisol hormone is one of the main stress hormones). If you are too high or low in this, there could be Adrenal problems or Thyroid (they are connected in the HPA (Hypothalmic, Pituitary and Adrenal axis that work in a feedback loop in your body - hope I'm not getting too technical!). When this is out of sync in the endocrine system virtually any symptom can occur!. The most confusing part is that if you do have ME/CFS this is nearly always abnormal anyway. You then get in the vicious circle of Do I have ME/CFS or just Adrenal Burnout (stress, bad diet, late nights etc.etc). I am in the process of getting further endocrine testing done (24 hour Urinalysis for Cortisol) and Blood Cortisol and possibly ACTH test as my ASI saliva test came back abnormal.

Also, try to get to sleep before 10pm if possible. This is when you get whats known as 'second wind' when your adrenals kick in again to keep you up until 1-2am. The more you can do to support your Adrenals and let them rest/recover, in turn this will only help.

Also Try immune support (I think you already mentioned herbs you are taking). The more you boost your immune system the better.

I'll let you know how I get on with my tests. It's the hardest thing ever (as I AM Mr Anxiety, Depressed and constantly thinking negative thoughts - like I'm going to be like this for the rest of my life!), but if we give in, then It's won! Just think, when you do come through this, you will be stronger than ever for the experience!

Also, Chris is a lifesaver over on the Thyroid/Addisons board and is VERY clued up on anything related. So if it does turn out to be this, post your Thyroid (T3-T4,Free T3, Free T4 and TSH) over on their. He will almost surely help you out.

Take Care,

Mike (Newcastle, UK).

P.S Another simple test to do for Adrenal Exhaustion is the 'Torch Test'. You will find out how to do this on one of my posts (a couple down on this board I think - title 'DOES THIS SOUND LIKE ME/CFS?'.

 
Old 02-11-2005, 09:14 AM   #3
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jonp HB User
Re: whats going on?

hey there

thanks for such a lenghy reply. ill check out the stuff on adrenal glansd thanks

 
Old 02-11-2005, 12:00 PM   #4
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jonp HB User
Re: whats going on?

hey i treid the flashlight test - my pupils kind of go small, then large, then small - they never stay small or large - whats that mean?

 
Old 02-12-2005, 02:33 AM   #5
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peregrine HB User
Re: whats going on?

Jonathan, the relapses you describe are classic of CFIDS "flares".

 
Old 02-12-2005, 03:40 AM   #6
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jonp HB User
Re: whats going on?

Quote:
Originally Posted by peregrine
Jonathan, the relapses you describe are classic of CFIDS "flares".
Thanks yeah i know.

Im just trying to see if this colud be anything else, e.g. lyme's etc. not even sure if i have had the test done. Im trying to eliminate all other possibilities.

 
Old 02-13-2005, 01:23 AM   #7
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woozyguy HB User
Re: whats going on?

Yes I have got most of those symptoms in the past. Well I was better before actually as I only used to get fatigue and brainfog and maybe a bit of acheyness but now I get the balance problems which come on if I exert myself. This did not used to happen before. So doctors are wrong when they tell you ME usually gets better over time. It may get better overall, but some symptoms can be worse than others and symptoms can change over time. I have heard quite a few people say they never got too many brain problems in the beginning (just fatigue/pain) but then they started getting them. I have been taking the following since my relapse ( Essential Fatty Acids EFAs, T3 and now i am on antibiotics and metronidazole as I saw a doctor who thinks ME is something to do with Borrelia) Well I am managing better now but the symptoms can still come on so I have not completely got rid of them.

Anyone else had a similar pattern happen?

martin

 
Old 02-13-2005, 02:58 AM   #8
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Chris1968 HB User
Re: whats going on?

Hi Jonathan,

I have been like this for 6 and half years now. Mine started just like yours with the dizziness right out of the blue and it has gotten worse over the years with loads of other symptoms. I have had loads of different diagnosis's inner ear, chronic fatigue, low thyroid, borellia and now Im looking into adrenal fatigue. It seems there are quite a few of us with these symptoms. As Mike said I would look into adrenal stuff particulary because of your reaction to the torch test. It is supposed to indicate adrenal fatigue when you your pupil doesnt stay small.

Chris

 
Old 02-13-2005, 04:19 AM   #9
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jonp HB User
Re: whats going on?

Quote:
Originally Posted by woozyguy
Yes I have got most of those symptoms in the past. Well I was better before actually as I only used to get fatigue and brainfog and maybe a bit of acheyness but now I get the balance problems which come on if I exert myself. This did not used to happen before. So doctors are wrong when they tell you ME usually gets better over time. It may get better overall, but some symptoms can be worse than others and symptoms can change over time. I have heard quite a few people say they never got too many brain problems in the beginning (just fatigue/pain) but then they started getting them. I have been taking the following since my relapse ( Essential Fatty Acids EFAs, T3 and now i am on antibiotics and metronidazole as I saw a doctor who thinks ME is something to do with Borrelia) Well I am managing better now but the symptoms can still come on so I have not completely got rid of them.

Anyone else had a similar pattern happen?

martin

if the doc says its Borrelia, that means its lyme disease doesnt it?

 
Old 02-13-2005, 04:25 AM   #10
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jonp HB User
Re: whats going on?

Quote:
Originally Posted by Chris1968
Hi Jonathan,

I have been like this for 6 and half years now. Mine started just like yours with the dizziness right out of the blue and it has gotten worse over the years with loads of other symptoms. I have had loads of different diagnosis's inner ear, chronic fatigue, low thyroid, borellia and now Im looking into adrenal fatigue. It seems there are quite a few of us with these symptoms. As Mike said I would look into adrenal stuff particulary because of your reaction to the torch test. It is supposed to indicate adrenal fatigue when you your pupil doesnt stay small.

Chris
im going to go to my doc with the following requests for blood tests:


Blood tests to rule out other illnesses
The following tests may be carried out by GPs, because it is important to rule out other conditions before diagnosing someone with ME.
FBC (full blood count) – this is to exclude anaemia, leukaemia and other blood disorders. The haemoglobin level is low in anaemia. The while cell count (involved in fighting infection) may be raised in a recent bacterial infection but low in a recent viral infection. Otherwise you would expect the result to be normal in ME.
Paul-Bunnell (or IM) test – this is another test done on the same tube of blood and looks for recent Glandular Fever infections (infectious mononucleosis), which commonly causes post-viral fatigue and may sometimes lead to ME.
Cardio CRP (C-reactive protein), PV (plasma viscosity) and ESR (erythrocyte sedimentation rate) – are all non-specific markers for inflammation or infection. Inflammation could for instance be due to inflammatory arthritis, inflammatory bowel disease or rarely malignancy. Infection could be bacterial or viral. Unless one of these was a precipitant for ME, in general you would expect these to be normal.
U&E (urea and electrolytes) and creatinine – these are measures of kidney function. The urea and creatinine levels are raised in kidney disease. There may be minor abnormalities in these results with other problems such as dehydration or Addison’s disease (a deficiency of the hormone cortisol), and a few rare syndromes that alter potassium levels. You would expect results to be normal in ME. Blood or urine glucose is raised in diabetes - a vital illness to exclude in someone presenting with fatigue. Pathological hypoglycaemia (very low blood glucose) is rare. An Adrenal Stress Index (ASI) may prove useful- cortisol test.
Urinalysis – is a ‘dipstick’ urine test. It checks for protein (may indicate infection or kidney disease), glucose (which could indicate diabetes), ketone (raised with vomiting, r**** weight loss or untreated diabetes).
LFT (liver function tests) – this is a measure of enzymes produced by the liver, and bilirubin which is processed by the liver. If any of these are raised this could indicate hepatitis (including Glandular Fever) or other liver disease. A small percentage of the population normally has a slightly raised bilirubin, which can go up during infection but does not indicate any liver disease. This is called Gilbert’s disease. Uric acid, ALT, AST.
TFT (thyroid function tests) – this demonstrates normal, over or under activity of the thyroid gland. Thyroid stimulating hormone, thyroid-stimulating immunoglobulin, free T3, free T4 tests.
CK (creatine kinase) – a muscle enzyme. It may be raised with some muscle disorders and commonly after injury or bruising.
Endomysial antibody – this is a screening test for coeliac disease (affects 1:200 population) which can present with fatigue. The treatment of confirmed coeliac disease is lifelong complete avoidance of food containing gluten (a protein found in wheat, rye, barley and oats).
Viral titres – indicates past or recent infection of various viral infections. Titres of some ‘atypical’ organisms may also be measured, eg. mycoplasma or Borrelia (Lyme disease and also Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma).
RhF (rheumatoid factor), ANA (antinuclear antibody) and autoantibodies – a battery of tests that look for conditions such as rheumatoid disease, SLE and other auto-immune diseases, where the body erroneously attacks itself. e.g. lupus, RA. These tests should all be normal in ME.
Toxoplasmosis check
CMP Metabolic Panel
Cholesterol Panel
Catecholamines / Plasma Metanephrines
ACTH – adrenocorticotropic hormone test
Prolactin (PRL) levels
Magenisum levels
Ferritin / iron / Total iron-binding capacity (TIBC), total iron saturation, transferrin saturation
B12 (methylmalonic acid) / MMA tests - To help detect early and/or mild vitamin B12 deficiency, especially at the tissue level; to help diagnose methylmalonic acidemia, a rare inherited metabolic disorder.
IGF-1 (Insulin-like Growth Factor – 1), Somatomedin C
Testosterone (free & total)
Tissue transglutamine (wheat allergy / celiac disease)
Vitamin B12 & Folate
Plasma total homocysteine
Haemoglobin A1C (3 month glucose)
Helicobacter pylori Ab (lgG) – stomach ulcer test


ill ask him to take note of the thryroid, cortisol (adrenal insufficiency) and lyme diseased tests in paricticular.

Sound like a good idea??

my GP is pretty good so i hope he wont refuse.

 
Old 02-13-2005, 11:21 AM   #11
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Join Date: Oct 2004
Location: Pennsylvania
Posts: 560
Concerned Male HB User
Re: whats going on?

Quote:
Originally Posted by jonathanp
im going to go to my doc with the following requests for blood tests:


Blood tests to rule out other illnesses
The following tests may be carried out by GPs, because it is important to rule out other conditions before diagnosing someone with ME.
FBC (full blood count) – this is to exclude anaemia, leukaemia and other blood disorders. The haemoglobin level is low in anaemia. The while cell count (involved in fighting infection) may be raised in a recent bacterial infection but low in a recent viral infection. Otherwise you would expect the result to be normal in ME.
Paul-Bunnell (or IM) test – this is another test done on the same tube of blood and looks for recent Glandular Fever infections (infectious mononucleosis), which commonly causes post-viral fatigue and may sometimes lead to ME.
Cardio CRP (C-reactive protein), PV (plasma viscosity) and ESR (erythrocyte sedimentation rate) – are all non-specific markers for inflammation or infection. Inflammation could for instance be due to inflammatory arthritis, inflammatory bowel disease or rarely malignancy. Infection could be bacterial or viral. Unless one of these was a precipitant for ME, in general you would expect these to be normal.
U&E (urea and electrolytes) and creatinine – these are measures of kidney function. The urea and creatinine levels are raised in kidney disease. There may be minor abnormalities in these results with other problems such as dehydration or Addison’s disease (a deficiency of the hormone cortisol), and a few rare syndromes that alter potassium levels. You would expect results to be normal in ME. Blood or urine glucose is raised in diabetes - a vital illness to exclude in someone presenting with fatigue. Pathological hypoglycaemia (very low blood glucose) is rare. An Adrenal Stress Index (ASI) may prove useful- cortisol test.
Urinalysis – is a ‘dipstick’ urine test. It checks for protein (may indicate infection or kidney disease), glucose (which could indicate diabetes), ketone (raised with vomiting, r**** weight loss or untreated diabetes).
LFT (liver function tests) – this is a measure of enzymes produced by the liver, and bilirubin which is processed by the liver. If any of these are raised this could indicate hepatitis (including Glandular Fever) or other liver disease. A small percentage of the population normally has a slightly raised bilirubin, which can go up during infection but does not indicate any liver disease. This is called Gilbert’s disease. Uric acid, ALT, AST.
TFT (thyroid function tests) – this demonstrates normal, over or under activity of the thyroid gland. Thyroid stimulating hormone, thyroid-stimulating immunoglobulin, free T3, free T4 tests.
CK (creatine kinase) – a muscle enzyme. It may be raised with some muscle disorders and commonly after injury or bruising.
Endomysial antibody – this is a screening test for coeliac disease (affects 1:200 population) which can present with fatigue. The treatment of confirmed coeliac disease is lifelong complete avoidance of food containing gluten (a protein found in wheat, rye, barley and oats).
Viral titres – indicates past or recent infection of various viral infections. Titres of some ‘atypical’ organisms may also be measured, eg. mycoplasma or Borrelia (Lyme disease and also Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma).
RhF (rheumatoid factor), ANA (antinuclear antibody) and autoantibodies – a battery of tests that look for conditions such as rheumatoid disease, SLE and other auto-immune diseases, where the body erroneously attacks itself. e.g. lupus, RA. These tests should all be normal in ME.
Toxoplasmosis check
CMP Metabolic Panel
Cholesterol Panel
Catecholamines / Plasma Metanephrines
ACTH – adrenocorticotropic hormone test
Prolactin (PRL) levels
Magenisum levels
Ferritin / iron / Total iron-binding capacity (TIBC), total iron saturation, transferrin saturation
B12 (methylmalonic acid) / MMA tests - To help detect early and/or mild vitamin B12 deficiency, especially at the tissue level; to help diagnose methylmalonic acidemia, a rare inherited metabolic disorder.
IGF-1 (Insulin-like Growth Factor – 1), Somatomedin C
Testosterone (free & total)
Tissue transglutamine (wheat allergy / celiac disease)
Vitamin B12 & Folate
Plasma total homocysteine
Haemoglobin A1C (3 month glucose)
Helicobacter pylori Ab (lgG) – stomach ulcer test


ill ask him to take note of the thryroid, cortisol (adrenal insufficiency) and lyme diseased tests in paricticular.

Sound like a good idea??

my GP is pretty good so i hope he wont refuse.
Is your insurance going to pay for all those tests?

 
Old 02-13-2005, 12:08 PM   #12
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Posts: 263
kiya HB User
Re: whats going on?

Living in the UK, if the GP agrees to run the tests, they're absolutely free. A much-needed perk when private healthcare requires an NHS referral.

 
Old 02-14-2005, 03:35 AM   #13
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Join Date: Feb 2004
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jonp HB User
Re: whats going on?

i do have private insurance anyway just in case?

 
Old 02-16-2005, 06:20 AM   #14
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Location: Greenville, SC, USA
Posts: 578
Bothrops HB User
Re: whats going on?

Hey Jonathan,
It has been a while since I heard from you. I kinda thought you had recovered. Since the last time we spoke I have been somewhat diagnosed with CFS. My Doc said she would diagnose me with it but she beleives that there is something causing the problem that has yet to be found. I did test positive to chronic EBV, cytomeglovirus and I had a speckled pattern ANA. It seems to be common for those with CFS to test + for all that.

I have been refered to a rhumatologist, a lymes specialist and I am getting an impacted wisdom tooth removed. From your post it sounds like you have a good plan to all the bloodwork you will have done.

Let us know if they find anything.

Derek

 
Old 02-16-2005, 10:41 AM   #15
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Posts: 201
jonp HB User
Re: whats going on?

Quote:
Originally Posted by Bothrops
Hey Jonathan,
It has been a while since I heard from you. I kinda thought you had recovered. Since the last time we spoke I have been somewhat diagnosed with CFS. My Doc said she would diagnose me with it but she beleives that there is something causing the problem that has yet to be found. I did test positive to chronic EBV, cytomeglovirus and I had a speckled pattern ANA. It seems to be common for those with CFS to test + for all that.

I have been refered to a rhumatologist, a lymes specialist and I am getting an impacted wisdom tooth removed. From your post it sounds like you have a good plan to all the bloodwork you will have done.

Let us know if they find anything.

Derek

my GP refused me any bloodwork. Apparently from the 6 or 7 tests already done all is ruled out. basically he fobbed me off

 
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