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

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?'.

hey there

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

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?

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

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.

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

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

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?

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.

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?

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.

i do have private insurance anyway just in case?

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

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

From reading some of your descriptions of your illness, i have to say that my illness started and exists almost in the exact same way! About a year and half ago, I had a really bad faint spell at work one night...never felt anything like it in my life. At the time, I just figured it was the flu, I went home and suffered through it for about 10 days. One of the remarkable things I noted was that all the dizziness, faintness, weakness, and nausea and vomitting slowly but surely lifted in the next coming weeks. My anxiety remained behind though, but not as bad as it was during that period. I was really into weighlifting at the time so as soon as I thought I could handle it again, I started again. Little did I know that this was pretty much the end of me--after that workout session, I suffered a major relapse but this time, the symptoms never cleared. I continued working as long as I could but eventually had to stop...the anxiety, panic attacks, negative thoughts, faint spells, flu symptoms, terrible sleep, exercise intolerance, post-exertional malaise, brain fog, and poor memory has never left me since. There were times where I felt better...last spring and early summer...but it didn't last.

Early on in the course of my illness, I was diagnosed as having Lyme Disease...ok, I thought, a few weeks of antibiotics and I'll be fine, right? Wrong! They immediately started me on IV Rocephin for six weeks....it did virtually nothing for me. I took Doxycycline after this for another six weeks...felt terrible the whole time I was on it....after stopping, I started feeling better and better...not great but better...It was also getting warmer at the time too...hmmmm...I'll tell you about my theory on that later. I relapsed after attempting allergy shots. I was diagnosed with really bad allergies but the shots must have caused havoc to my immune system because they caused a MAJOR flare that I never recovered from totally. Bad news...don't even think about trying them. I was eventually diagnosed with having Post Lyme Disease or Chronic Fatigue Syndrome after major depression was ruled out. They decided to not try or continue antibiotics again because it wouldn't help.

Now, like I was describing before, I'm sure more than one of you has noticed that you feel much better in the warmer weather. I believe this has to do with the sunlight exposure. I've theorized that in the winter months, our body is producing excessive amounts of melatonin which is driving our serotonin levels really low causing increases in depression, anxiety, and other symptoms such as cold intolerance and oversleeping. I've done some research into Seasonal Affective Disorder and I believe that it may have a lot to do with it. The current treatment is Light therapy and/or antidepressant. I don't know about any of you, but I am extremely intolerant to antidepressants---they make me so sick and panicked even at a fraction of the total dose...completely unbearable. I'm going to try Light Therapy soon, hopefully it will help me...who knows...

Anyway, I'm really curious about also trying thyroid replacement therapy (even though my blood work looked normal) or trying Provigil (a mild stimulant). I've heard people are having success with them...Anyone tried these?

From reading some of your descriptions of your illness, i have to say that my illness started and exists almost in the exact same way! About a year and half ago, I had a really bad faint spell at work one night...never felt anything like it in my life. At the time, I just figured it was the flu, I went home and suffered through it for about 10 days. One of the remarkable things I noted was that all the dizziness, faintness, weakness, and nausea and vomitting slowly but surely lifted in the next coming weeks. My anxiety remained behind though, but not as bad as it was during that period. I was really into weighlifting at the time so as soon as I thought I could handle it again, I started again. Little did I know that this was pretty much the end of me--after that workout session, I suffered a major relapse but this time, the symptoms never cleared. I continued working as long as I could but eventually had to stop...the anxiety, panic attacks, negative thoughts, faint spells, flu symptoms, terrible sleep, exercise intolerance, post-exertional malaise, brain fog, and poor memory has never left me since. There were times where I felt better...last spring and early summer...but it didn't last.

Early on in the course of my illness, I was diagnosed as having Lyme Disease...ok, I thought, a few weeks of antibiotics and I'll be fine, right? Wrong! They immediately started me on IV Rocephin for six weeks....it did virtually nothing for me. I took Doxycycline after this for another six weeks...felt terrible the whole time I was on it....after stopping, I started feeling better and better...not great but better...It was also getting warmer at the time too...hmmmm...I'll tell you about my theory on that later. I relapsed after attempting allergy shots. I was diagnosed with really bad allergies but the shots must have caused havoc to my immune system because they caused a MAJOR flare that I never recovered from totally. Bad news...don't even think about trying them. I was eventually diagnosed with having Post Lyme Disease or Chronic Fatigue Syndrome after major depression was ruled out. They decided to not try or continue antibiotics again because it wouldn't help.

Now, like I was describing before, I'm sure more than one of you has noticed that you feel much better in the warmer weather. I believe this has to do with the sunlight exposure. I've theorized that in the winter months, our body is producing excessive amounts of melatonin which is driving our serotonin levels really low causing increases in depression, anxiety, and other symptoms such as cold intolerance and oversleeping. I've done some research into Seasonal Affective Disorder and I believe that it may have a lot to do with it. The current treatment is Light therapy and/or antidepressant. I don't know about any of you, but I am extremely intolerant to antidepressants---they make me so sick and panicked even at a fraction of the total dose...completely unbearable. I'm going to try Light Therapy soon, hopefully it will help me...who knows...

Anyway, I'm really curious about also trying thyroid replacement therapy (even though my blood work looked normal) or trying Provigil (a mild stimulant). I've heard people are having success with them...Anyone tried these?


thats to do with Seasonal Anti-Depression (SAD) (?) isnt it?
Its true that people do get depressed in the winter - some people get it very bad an its an illness - the one i described above i believe? i may be wrong?

I wouldn't mess around with your hormones (Thyroid replacement therapy) if you don't have an existing problem. You would just be further unbalancing your system.

From reading some of your descriptions of your illness, i have to say that my illness started and exists almost in the exact same way! About a year and half ago, I had a really bad faint spell at work one night...never felt anything like it in my life. At the time, I just figured it was the flu, I went home and suffered through it for about 10 days. One of the remarkable things I noted was that all the dizziness, faintness, weakness, and nausea and vomitting slowly but surely lifted in the next coming weeks. My anxiety remained behind though, but not as bad as it was during that period. I was really into weighlifting at the time so as soon as I thought I could handle it again, I started again. Little did I know that this was pretty much the end of me--after that workout session, I suffered a major relapse but this time, the symptoms never cleared. I continued working as long as I could but eventually had to stop...the anxiety, panic attacks, negative thoughts, faint spells, flu symptoms, terrible sleep, exercise intolerance, post-exertional malaise, brain fog, and poor memory has never left me since. There were times where I felt better...last spring and early summer...but it didn't last.

Early on in the course of my illness, I was diagnosed as having Lyme Disease...ok, I thought, a few weeks of antibiotics and I'll be fine, right? Wrong! They immediately started me on IV Rocephin for six weeks....it did virtually nothing for me. I took Doxycycline after this for another six weeks...felt terrible the whole time I was on it....after stopping, I started feeling better and better...not great but better...It was also getting warmer at the time too...hmmmm...I'll tell you about my theory on that later. I relapsed after attempting allergy shots. I was diagnosed with really bad allergies but the shots must have caused havoc to my immune system because they caused a MAJOR flare that I never recovered from totally. Bad news...don't even think about trying them. I was eventually diagnosed with having Post Lyme Disease or Chronic Fatigue Syndrome after major depression was ruled out. They decided to not try or continue antibiotics again because it wouldn't help.

Now, like I was describing before, I'm sure more than one of you has noticed that you feel much better in the warmer weather. I believe this has to do with the sunlight exposure. I've theorized that in the winter months, our body is producing excessive amounts of melatonin which is driving our serotonin levels really low causing increases in depression, anxiety, and other symptoms such as cold intolerance and oversleeping. I've done some research into Seasonal Affective Disorder and I believe that it may have a lot to do with it. The current treatment is Light therapy and/or antidepressant. I don't know about any of you, but I am extremely intolerant to antidepressants---they make me so sick and panicked even at a fraction of the total dose...completely unbearable. I'm going to try Light Therapy soon, hopefully it will help me...who knows...

Anyway, I'm really curious about also trying thyroid replacement therapy (even though my blood work looked normal) or trying Provigil (a mild stimulant). I've heard people are having success with them...Anyone tried these?

lamotta77,
I have thought the same. I feel much better in the warmer months, especially while swiming in a pool. During the winter my symptoms double as does the pain in my legs. What is very funny is the fact that a lot of CFS and Fibro Docs consider vitamin D as a contributar to the illness and recomend staying out of the sun. Have you ever heard of the Marshall Protocol? It is all about staying out of the sun. The reason they came up with this is the fact that we all, fibro and cfs patients, seem to have elevated vitamin D levels.

Im a little confused on lymes, if you have lymes without doubt you should be treated for it. Maybe there is a lyme specialist in your area that you could see. I have heard those with chronic lymes can take years to recover, but recovery normally happens.

I would stay away from the thyroid replacment. If you know without doubt you have lymes get a good LLD. If your thyroid levels are off they have good proven drugs to help.

Derek

Peregrine - Yeah, I totally agree. I had some advice from a private doctor that I should take a trial of thyroxine as my TSH is slightly raised (but only if you take AACE's guidelines of 0.3-3.0). My GP and endo said that it wasn't necessary, so I've decided against for the time being, despite having all the symptoms of hypothyroidism. If my thyroid is beginning to fail then it'll carry on and in a few years the TSH will be out of range.

The problem with taking thyroid replacement therapy when you don't need it, is that you run the risk of becoming hyperthyroid and get all the horrible things associated with that. I have been told that a very small amount of thyroxine if your TSH is high-normal, probably wouldn't cause hyper, but is it worth the risk???

What I have found that's helped is CoQ10 - it's relieved me of the worst of my aches and pains. I used to struggle getting up in the morning, but don't have as severe aches as I used to. Definitely worth a try despite the expense.

I've heard of the Marshall Protocol but I'm not to thrilled about it. First of all, having elevated Vitamin D doesn't prove that the illness is somehow fed by it...That doesn't make sense to me. I've read a lot of the posts put up by patients on it and the results were mixed at best. Remember that the protocol involves extensive use of antibiotics so that is where the benefit, if any, may be noted. Sunlight has always helped me feel better and the warmer it is outside, the better I feel. If anything, my vitamin D levels may be lower than normal although I have no proof of that. The reason I mention Seasonal Affective Disorder is that depression and anxiety are very common in CFS/Fibro and having this disorder will only serve to compound the problem. I always noticed that I felt better in the warmer months my whole life. Now that I'm sick, it seems a whole lot more of a problem. It feels like as soon as it turns fall, someone has punched a hole in my gas tank and my enegry slowly leaks out until I'm wiped! Anyone who has this condition along with CFS/Fibro should certainly address it...it could mean the difference between staying home all day in bed and being able to work again.

HEY !

ALSO, CHECK OUT " EPSTEIN BARR VIRUS " ! It can be detected by blood work.
EBV can cause all kinds of conditions, and it attacks the immune system, and our organs.
It's like anything else, I suppose, ' everybody is different ! '
I have been sick since June of 04' !

I did a post on this under ' Infectious Diseases ', as I am searching for answers myself.

Good Luck........,
Hope this helps,

Gee Gee

Hi Lamotta77,

Your symptoms are EXACTLY the same as mine. I am a 32 year old male and cought this thing in Sept 03. My first symoms were dizziness when leaning over, disequilibrium, like an altered state of conciousness that would come and go (not sure if brain fog is the right term, but I would get pressure behind eyes and forehead and my IQ would be affecterd. I couldn't think straight). Then a couple of months later, came the tinnitus, jaw problems, anxiety, depression and a wierd change in sleeping patterns (the first few months I couldn't fall asleep and would wake up frequently). Now, I can only stay asleep until 06:00 every day for the past few months (Sept - present). I don't have any problems getting to sleep. If anything, by 10/11pm I'm wiped out!

My symptoms were bad from Sept 03 until around Jan/Feb 04 when they eased a little (enough to carry on a pretty normal life). Then slowly in Oct 04 they came back big time. Same symptoms as before (chronic anxiety, negative thoughts - like P.T.S.D or groundhog day as I call it. My mind feels stuck in a loop. Every day the same. Cant concentrate on the future, just how I feel now).

The Anxiety part is *Really Strange!!!*. Every day I seem to panic if I have to look at somone to talk to them. I get real, physical symptoms and get very jumpy. It's like my body seems to get shocks or I just panic and need to get out of the conversation and be by myself. I don't even hear what they are saying half of the time even though they are talking and I am listening. I am too busy on the eye contact bit and that panic's me. Does this make sense? At times I've thought I am going mad. My worst fear is that I'm going to be like this for the rest of my life.

I too (like most) have tried Antidepressants. SSRI's, SNRI's, Tricyclics etc. The only one I could tolerate was Dothiepin (tryciclic) last summer. But it did neither any good or bad so I came off it. All the others, I have a MAJOR reaction after just one tablet even at a fraction of the dose. I've stopped taking them alltogether now. I'm just using St.Johns Wort and am trying Batch Rescue Remedy for the anxiety/panic.

I am still working full time after 18 months of this thing. My energy seems up and down at various times of the day, and this is when the panic and other strange symptoms come and go. The dizziness is there most days, but I am always allright for the first 20-30 minutes in the morning. Strange!
Recently, I've been noticing the muscle pains (especially in the backs of my leg and feet - at rest). It seems to last for days!

I have had all blood work done, Thyroid testsed, MRI's of Brain (2) and Cervical Spine and have tried absolutely everything immaginable to beat this thing. At times it feels like I have Brain damage even though MRI's are normal. I sure don't feel normal! Let's hope they do find a cause and cure for this thing soon. My answer to everything at the moment is that I'll end up either Better, Cured or Dead with this thing! I just hope it's the first two, even though I can't see a way forward at the moment. Still there are moments where life is worth living and that's what I'm grasping onto at the moment.

I am currently looking into the Adrenal Fatigue at the moment. Have you had a Saliva test for Cortisol? Mine is low and I've been referred to an Endo for further investigation. It'll probably come back as secondary failure which apparently is common in CFS anyway! They are not prepared to treat it unless it's pure Addisons (or Cushings!)

Things that have helped me have been Accupuncture and Accumassage, High Dose Vitamin C, Meditation and keeping my schedule as regular as clockwork.

I'm just praying for a good summer. I too, feel better in summer and warm weather (or did last Summer!). And, I'm going to by a SAD lightbox ready for next Winter!

Take Care,

Mike.

Mletters, wow, your story really interested me! Its amazing to note that our illness is almost exactly the same, even right down to the intolerance of antidepressants! I know exactly what you mean when you say that you feel like you have brain damage...I've often thought that about myself sometimes even though my MRI looked completely normal. I'm very curious about how you can tolerate St. John's Wort with no problems. I haven't tried that yet, but I have tried things like Sam-e and fish oil and they all seem to make me feel just as bad as antidepressants do. I was about to give up with those kinds of meds or herbs but maybe now I will try that one though...you never know. What does it seem to do for you and at what doseage are you trying it at? Also, about the Bach Rescue Remedy, does that seem to work as well?

I haven't tried a saliva cortisol test, but I heard that they are notoriously unreliable. I have done the AM Cortisol blood levels several times and they seem to be on the high end of normal, but nothing that concerned my doctors. I actually expected them to show up really low, but that wasn't the case at all. Also, my blood pressure runs a little high normal, so that helped rule out cortisol problems as well.

I haven't tried the Light Box Therapy yet, but I'm pretty excited about it. I've often wondered why I am so much more tired and sick in the winter months and the lack of light must be the reason for it. With little light, melatonin levels get high and that serves to drive serotonin way too low. While using an antidepressant is good enough for most people, since we can't take them, light therapy is probably the way to go. My doctor also gave me a script for Provigil which is a mild stimulant. Hopefully that may help clear up the brain fog and fatigue some...I will let you know how it works for me.

I'm glad I ran into you because this gives us both a great chance to compare notes and help each other out. Please, if you ever find anything that helps you, let me know because I could use all the help I can get. I will definately do the same for you...Thanks a million.

Hi'ya,

No problem. I will share whatever works for me with you and the rest of the board. I think we need to help each other out WHATEVER way we can, since doctors don't seem to be interested. You get the usual 10 minutes of ranting (or forgetting what you were going to say) and then get stuck on some waiting list for more tests! Anyway, that's my rant over.....He-He!

.... St John's wort took about two weeks to work for me. It's the BIOFORCE HYPERICUM COMPLEX. You take 30 drops, 3 times a day in some water. It costs around £7.99 for a 50ml bottle. Available in any good health shop.

I am also taking batch rescue remedy for the anxiety/panic attacks. I just take 5 drops whenever needed.

Recently, the dizziness has been pretty bad (not like a spinning vertigo, just wierd head sensations and forehead pressure), so I have been taking Betahistine Hydrocloride (2 x tablets) in the morning. This really settles the dizziness down. Granted it isn't curing the problem but at least it's letting me live a little.

At the moment, I'm just concentrating on work (still working full time as a computer analyst) and home life. Any social life is out of the window at the moment till I get better?

My routine in the morning is, St.John's Wort, Half a glass of water with half a tablespoon of sea salt, pro-biotic drink, high EPA fish-oil (morEpa), adrenal suppliment tablet, and source of life (energy greens drink with B vitamins - for energy). Then, I juice some carrots every morning religiously. Then, it's a good breakfast of high protein (Eggs etc.). I avoid all Coffee, Tea, Carbonated drinks, anything with sugar and processed foods. I think it does help!

Hope this is of some help.

My next appointments are Neurologist in March and Vestibular function testing next week. I'll let you know how I get on.

Just a couple of questions.....

1. Do you feel allright when you first get up in the morning, then does the dizziness start 30-60 minutes later or is it always there?

2. Does the back of your head and/or neck hurt or feel strange?

3. Do you wake up early in the morning with racing nonsense thoughts?

4. Do you bump into door posts and find you're more clumsy than normal?

5. have you got bad short term memory loss?

Take care,

Mike.

.... St John's wort took about two weeks to work for me. It's the BIOFORCE HYPERICUM COMPLEX. You take 30 drops, 3 times a day in some water. It costs around £7.99 for a 50ml bottle. Available in any good health shop.


Just a word of caution. St. John's wort is not right for everyone. It makes me (and everyone else I know who has CFIDS) feel worse, kind of a weird feeling as if it is doing the opposite of what it's supposed to do. Vitamins and herbs are not "one size fits all". I'm glad it works for you, but in the end, I think it's so important to listen to our bodies.