Aa
Loads of symptoms, no answers, please help!
Hello all,
I'm in the UK so things may be a little different here, so bear with me. I'm posting here because from reading the threads it seems like you get tested for things much more readily in the US and so may be able to advise me on what to ask to be tested for. Also I didn't know which section to put this in, so just guessed! If it belongs in a different one, apologies.
I'm 27 and have been severely unwell for the past 4 months. It actually all started in May last year (11 months ago). I suddenly got very unwell, at first they thought it was a kidney infection, I had numerous courses of anti biotics. Symptoms were:
Dizziness, nausea, muscle pain and weakness, brain fog/no concentration, heart palpitations and pain around my right kidney and recurrent urinary infections. Anti biotics didn't clear anything up except for the urine infections.
I had blood tests testing for all the usual things: full blood count, inflammatory markers, kidney & liver function, thyroid, glandular fever, and a few others I can't remember. Nothing showed up. Everytime I got a new urine infection I had anti biotics and gradually the other symptoms got better. I was in bed solidly for 6 weeks and housebound for the last 6 weeks, that took me up to August. I put it down to a 'virus'. Although then I was well I still had pain around my right kidney and had an ultrasound which showed nothing. The pain comes and goes and didn't bother me that much, I found if I cut out wheat and potatoes from my diet it helped. I didn't have any digestive problems though. Maybe it's just kidney stones? So yeah, I was absolutely fine from August until the middle of December. I was zipping about and enjoying life, really appreciating health!
Then in December I got the flu and it was normal flu for a week, then the flu symptoms subsided but the above symptoms started up again. Except no urine infection. I stayed in bed for 2 weeks and felt fine, so I went back to work after christmas and collapsed. Then I was much, much worse than I ever have been. I was vomiting every morning for a week or so, the room was spinning around me and I thought I was dying. I didn't have a urine infection at all, but a few weeks after all this started up again I got a bacterial throat infection. Anti biotics have helped but every time I come off them it just comes back. I've also had a lot more heart things this time. I get palpitations while lying down, and if I do anything physical like climb the stairs I get chest pains, shortness of breath and once I got really sweaty suddenly. When I feel more unwell my heart rate goes up, I once counted it as 110 beats per minute, where usually it's around 60. At the doctors it was measured as 106 bpm and my blood pressure was high. I'm not overweight and before all this started I was fairly fit as I walked about 5 miles a day.I'm having an ECG scan next week.
I've been ill with this for 4 months this time round and I'm just not getting better. I'm onto my 4th course of anti biotics for my throat and I've just been referred to an Ear/Nose/Throat specialist. My GP won't refer me to an immunologist or anyone else because my blood tests were all normal. The only thing that has shown up is a severe vitamin D deficiency. The number was 12 but it's meant to be 50 or 60 at least I think. I've been on prescribed strong supplements for a month now and I'm not feeling any better at all. The test for hyperparathyroidism also came back normal. (I had to beg the doctor to test for that). Apparently my calcium levels are ok too, although I don't know the exact figures.
I feel like it's an immune thing. For some reason my immune system just isn't working properly, but the GP won't listen. They just fob me off with more anti biotics.
Can it be to do with my immune system and a viral infection causing the underlying problems, and then opportunistic bacteria getting a hold because my immune system is struggling? Why is my WBC count and inflammatory markers normal then?
What can I ask to be tested for next?
I'm stuck in bed or on the sofa day in, day out. I find simple things like having a shower exhausting and make me feel loads worse. I've lost my job and had to move in with my partner because I couldn't look after myself. Now I feel depressed and like I'm just in the way. I'm sick of feeling so unwell and I'm sick of having no life. I haven't been out of the house apart from to go to the doctors since December, it's now April. I'm ridiculously desperate for any kind of hope.
Any ideas?
I'm in the UK so things may be a little different here, so bear with me. I'm posting here because from reading the threads it seems like you get tested for things much more readily in the US and so may be able to advise me on what to ask to be tested for. Also I didn't know which section to put this in, so just guessed! If it belongs in a different one, apologies.
I'm 27 and have been severely unwell for the past 4 months. It actually all started in May last year (11 months ago). I suddenly got very unwell, at first they thought it was a kidney infection, I had numerous courses of anti biotics. Symptoms were:
Dizziness, nausea, muscle pain and weakness, brain fog/no concentration, heart palpitations and pain around my right kidney and recurrent urinary infections. Anti biotics didn't clear anything up except for the urine infections.
I had blood tests testing for all the usual things: full blood count, inflammatory markers, kidney & liver function, thyroid, glandular fever, and a few others I can't remember. Nothing showed up. Everytime I got a new urine infection I had anti biotics and gradually the other symptoms got better. I was in bed solidly for 6 weeks and housebound for the last 6 weeks, that took me up to August. I put it down to a 'virus'. Although then I was well I still had pain around my right kidney and had an ultrasound which showed nothing. The pain comes and goes and didn't bother me that much, I found if I cut out wheat and potatoes from my diet it helped. I didn't have any digestive problems though. Maybe it's just kidney stones? So yeah, I was absolutely fine from August until the middle of December. I was zipping about and enjoying life, really appreciating health!
Then in December I got the flu and it was normal flu for a week, then the flu symptoms subsided but the above symptoms started up again. Except no urine infection. I stayed in bed for 2 weeks and felt fine, so I went back to work after christmas and collapsed. Then I was much, much worse than I ever have been. I was vomiting every morning for a week or so, the room was spinning around me and I thought I was dying. I didn't have a urine infection at all, but a few weeks after all this started up again I got a bacterial throat infection. Anti biotics have helped but every time I come off them it just comes back. I've also had a lot more heart things this time. I get palpitations while lying down, and if I do anything physical like climb the stairs I get chest pains, shortness of breath and once I got really sweaty suddenly. When I feel more unwell my heart rate goes up, I once counted it as 110 beats per minute, where usually it's around 60. At the doctors it was measured as 106 bpm and my blood pressure was high. I'm not overweight and before all this started I was fairly fit as I walked about 5 miles a day.I'm having an ECG scan next week.
I've been ill with this for 4 months this time round and I'm just not getting better. I'm onto my 4th course of anti biotics for my throat and I've just been referred to an Ear/Nose/Throat specialist. My GP won't refer me to an immunologist or anyone else because my blood tests were all normal. The only thing that has shown up is a severe vitamin D deficiency. The number was 12 but it's meant to be 50 or 60 at least I think. I've been on prescribed strong supplements for a month now and I'm not feeling any better at all. The test for hyperparathyroidism also came back normal. (I had to beg the doctor to test for that). Apparently my calcium levels are ok too, although I don't know the exact figures.
I feel like it's an immune thing. For some reason my immune system just isn't working properly, but the GP won't listen. They just fob me off with more anti biotics.
Can it be to do with my immune system and a viral infection causing the underlying problems, and then opportunistic bacteria getting a hold because my immune system is struggling? Why is my WBC count and inflammatory markers normal then?
What can I ask to be tested for next?
I'm stuck in bed or on the sofa day in, day out. I find simple things like having a shower exhausting and make me feel loads worse. I've lost my job and had to move in with my partner because I couldn't look after myself. Now I feel depressed and like I'm just in the way. I'm sick of feeling so unwell and I'm sick of having no life. I haven't been out of the house apart from to go to the doctors since December, it's now April. I'm ridiculously desperate for any kind of hope.
Any ideas?
Hey decima.
I have been doing biochemical and nutritional research for years.
My wife was a clinical dietitian for many years. It is a well known
fact that medical doctors - here in N.America anyways- are not
educated and trained sufficiently in these fields.
"You are what you absorb, assimilate and eliminate" has replaced what you eat.
And in recent decades western societies for various reasons are facing alarmingly increasing rates of related issues.
With all declining nutritional values of the foods we eat (it is scientifically proven- good book with sited research is "The End of Food"
Deficiencies are as commensurate with the incidence of chronic disease.
My opinion is to err on the side of supplementing specially with
vitamin D3 SUBLINGUAL, Magnesium (see my earlier post) as it's almost
absent from the soil and commercial fertilizers usually do not contain any.
So where do we get this invaluable mineral (used in 300 important bodily functions) and B (B12 sublingual) and C Vitamins. (C with Bioflavonoids)
Detoxification - yes GB is gall bladder- is a very overlooked aspect of
health care. Please do a search for this as it would take me a lot of time to explain this to you in a post.
JohnBarron.org has a good tutorial on this.
It is not very complex. It's just involving and one needs to do a colon cleansing first for obvious reasons.
Go to the Lyme Disease forum, to get a pulse of what is going on with dx of underlying undetected pathogenic infections. It is frightening to see how the medical societies are approaching this.
If you need more info do not hesitate to let me know.
Wishing you well.
Niko
I have been doing biochemical and nutritional research for years.
My wife was a clinical dietitian for many years. It is a well known
fact that medical doctors - here in N.America anyways- are not
educated and trained sufficiently in these fields.
"You are what you absorb, assimilate and eliminate" has replaced what you eat.
And in recent decades western societies for various reasons are facing alarmingly increasing rates of related issues.
With all declining nutritional values of the foods we eat (it is scientifically proven- good book with sited research is "The End of Food"
Deficiencies are as commensurate with the incidence of chronic disease.
My opinion is to err on the side of supplementing specially with
vitamin D3 SUBLINGUAL, Magnesium (see my earlier post) as it's almost
absent from the soil and commercial fertilizers usually do not contain any.
So where do we get this invaluable mineral (used in 300 important bodily functions) and B (B12 sublingual) and C Vitamins. (C with Bioflavonoids)
Detoxification - yes GB is gall bladder- is a very overlooked aspect of
health care. Please do a search for this as it would take me a lot of time to explain this to you in a post.
JohnBarron.org has a good tutorial on this.
It is not very complex. It's just involving and one needs to do a colon cleansing first for obvious reasons.
Go to the Lyme Disease forum, to get a pulse of what is going on with dx of underlying undetected pathogenic infections. It is frightening to see how the medical societies are approaching this.
If you need more info do not hesitate to let me know.
Wishing you well.
Niko
Hello!
Thanks for your replies! I had to read the longer one several times to take it all in, there was so much good information and advice!
I've made lists of the things I need to google, supplements I need to take, and things to talk to the doctor about next. It's made it all seem more manageable.
I've just been looking into seeing an immunologist privately (bypassing my GP), I've found one that's a long way from where I live, but sees private patients and is the head of a CFS clinic that researches the link between CFS and virus's. If anyone's going to be interested in my symptoms, it'll be him I think. Will wait until I see the next GP, I'm seeing a female one this time on the 14th, (I've found female doctors are far more interested and don't fob me off because they don't instantly understand what's going on.)
I'm already on vit D supplements as that was the one thing that did show up. I haven't been tested for any other vitamin/mineral deficiency. I was told that 'you should get everything you need from your diet'. When I asked about malabsorption, the doctor just pulled a funny face and said it was unlikely and then moved on to something else.
The one thing I didn't understand, what do you mean by liver, lung, kidney and GB (Is that gall bladder?) detoxification? How is this done?
Thanks again :)
Thanks for your replies! I had to read the longer one several times to take it all in, there was so much good information and advice!
I've made lists of the things I need to google, supplements I need to take, and things to talk to the doctor about next. It's made it all seem more manageable.
I've just been looking into seeing an immunologist privately (bypassing my GP), I've found one that's a long way from where I live, but sees private patients and is the head of a CFS clinic that researches the link between CFS and virus's. If anyone's going to be interested in my symptoms, it'll be him I think. Will wait until I see the next GP, I'm seeing a female one this time on the 14th, (I've found female doctors are far more interested and don't fob me off because they don't instantly understand what's going on.)
I'm already on vit D supplements as that was the one thing that did show up. I haven't been tested for any other vitamin/mineral deficiency. I was told that 'you should get everything you need from your diet'. When I asked about malabsorption, the doctor just pulled a funny face and said it was unlikely and then moved on to something else.
The one thing I didn't understand, what do you mean by liver, lung, kidney and GB (Is that gall bladder?) detoxification? How is this done?
Thanks again :)
Hi again!
I just wanted to add:
For the vitamin D deficiency , taking sub lingual D3 emulsified is
probably best up to 50000 i.u. daily is safe to build up your stores, but have this checked first.
Also for magnesium-you're probably deficient - note that 99% of the bodies magnesium in the bones and tissues, so a blood test wouldn't give accurate results ( there's a mechanism that keeps it around 1%in the blood). Transdermal delivery of Magnesium Oil (Magnesium chloride flakes + water) is the preferred method of delivery-you also avoid any laxative effects bypassing the digestive and g/i systems.
Cheers,
Niko
I just wanted to add:
For the vitamin D deficiency , taking sub lingual D3 emulsified is
probably best up to 50000 i.u. daily is safe to build up your stores, but have this checked first.
Also for magnesium-you're probably deficient - note that 99% of the bodies magnesium in the bones and tissues, so a blood test wouldn't give accurate results ( there's a mechanism that keeps it around 1%in the blood). Transdermal delivery of Magnesium Oil (Magnesium chloride flakes + water) is the preferred method of delivery-you also avoid any laxative effects bypassing the digestive and g/i systems.
Cheers,
Niko
Hi decima.
This will be a long post. Please be patient!
Fundamental reasons for ill health.
1. Lack of nutrients (nutritional deficiencies) needed for normal functioning
2. Lack of oxygen at a cellular level and/or the inability of the cells to utilize oxygen.
3. Toxins, poisons, and waste products in the body because of an inability of the body to detoxify.
4. Lowered energy due to stress, shock, injury, emotional upsets, losses, worries, etc., and a lack of energy at a cellular level.
5 Genetic predisposition to illness.
Have you investigated any of the above, and if yes, what were the findings
and what was done?
My suspicions:
Originally: (from above) #4 +#1 --> imbalance and lowered immunity--> infections.
Following Antibiotic treatment: Antibiotics--> temporary relief from infection, immune system compromised further, possible yeast infection,
#5 expression, #2 inefficient breathing, #3 compromised lymphatic function, #4 decreased capacity for energy production--> All bodily systems functioning below capacity. (Not necessarily all in this order.)
In order to save a step I'm proceeding b4 you send me any answers or details.
Suggestions (disregard what has been addressed already):
a.Complete nutritional panel including tissue analysis for minerals.
Deficiencies of:
Zinc, magnesium, B12, Vitamin A, Vitamin D, copper, are suspect!
b. Complete detoxification starting with colon cleansing, followed by liver
& G.B, kidney and lung cleansing.
c. Breathing retraining -visit the normal breathing website.
Co-enzyme Q10-water soluble- supplementation.
d. Check for yeast infection. For self testing do a YouTube search for Candida saliva test. fast results. let me know the results
e. Do the Dr. Coca's Pulse test for reactions to anything ingested- even
delayed and hidden reactions. Free download. Takes a week to complete and get answers.
f. Have a blood volume test. If 15% lower than normal ranges* , it is indicative of an undetected serious pathogenic infection.
*25ml - 35ml red blood cells per Kg in body weight.
g. Ask if you can have a 24H Holter ECG. (This you take home-cannot shower or bathe for 24H!)
They have to look for abnormal T-Wave patterns-instead of peaks, there are inversions and valleys. Regardless of voltage being normal or not.
This again is very significant as it is indicative of undiagnosed serious pathogenic infectious conditions.
h. Distress! Do EFT, meditation, go to bwgen.com (binaural beat generating
software for relaxation, meditation, sleep induction) etc.
You asked:"Why is my WBC count and inflammatory markers normal then?"
It is because the undiagnosed pathogens are INTRACELLULAR and disguised as regular cells by wrapping themselves in cellular membrane
avoiding detection by standard blood tests. Your doctors wouldn't know much about this, as they are not up with this research and have no training in this field.
Very good observation though!
Your suspicions may be "right on the money"as they say.
However all this must be very overwhelming. Do you have anyone that can act as your health coach, to help you put together a plan of action
and see it through? The medical system WILL NOT do it for you.
It it very dysfunctional in cases like yours- I'm sure you figured this out already.
So, check out my suggestions, research on your own as well
and should you have any questions please let me know.
I didn't mean to bombard you with information. take your time with all this.
Stay strong and keep your focus on your improvement.
You can do this! Step by step.
For more support come and visit also the " Surviving Neurological Limbo Land-No dx" Group.
Take care.
Niko
This will be a long post. Please be patient!
Fundamental reasons for ill health.
1. Lack of nutrients (nutritional deficiencies) needed for normal functioning
2. Lack of oxygen at a cellular level and/or the inability of the cells to utilize oxygen.
3. Toxins, poisons, and waste products in the body because of an inability of the body to detoxify.
4. Lowered energy due to stress, shock, injury, emotional upsets, losses, worries, etc., and a lack of energy at a cellular level.
5 Genetic predisposition to illness.
Have you investigated any of the above, and if yes, what were the findings
and what was done?
My suspicions:
Originally: (from above) #4 +#1 --> imbalance and lowered immunity--> infections.
Following Antibiotic treatment: Antibiotics--> temporary relief from infection, immune system compromised further, possible yeast infection,
#5 expression, #2 inefficient breathing, #3 compromised lymphatic function, #4 decreased capacity for energy production--> All bodily systems functioning below capacity. (Not necessarily all in this order.)
In order to save a step I'm proceeding b4 you send me any answers or details.
Suggestions (disregard what has been addressed already):
a.Complete nutritional panel including tissue analysis for minerals.
Deficiencies of:
Zinc, magnesium, B12, Vitamin A, Vitamin D, copper, are suspect!
b. Complete detoxification starting with colon cleansing, followed by liver
& G.B, kidney and lung cleansing.
c. Breathing retraining -visit the normal breathing website.
Co-enzyme Q10-water soluble- supplementation.
d. Check for yeast infection. For self testing do a YouTube search for Candida saliva test. fast results. let me know the results
e. Do the Dr. Coca's Pulse test for reactions to anything ingested- even
delayed and hidden reactions. Free download. Takes a week to complete and get answers.
f. Have a blood volume test. If 15% lower than normal ranges* , it is indicative of an undetected serious pathogenic infection.
*25ml - 35ml red blood cells per Kg in body weight.
g. Ask if you can have a 24H Holter ECG. (This you take home-cannot shower or bathe for 24H!)
They have to look for abnormal T-Wave patterns-instead of peaks, there are inversions and valleys. Regardless of voltage being normal or not.
This again is very significant as it is indicative of undiagnosed serious pathogenic infectious conditions.
h. Distress! Do EFT, meditation, go to bwgen.com (binaural beat generating
software for relaxation, meditation, sleep induction) etc.
You asked:"Why is my WBC count and inflammatory markers normal then?"
It is because the undiagnosed pathogens are INTRACELLULAR and disguised as regular cells by wrapping themselves in cellular membrane
avoiding detection by standard blood tests. Your doctors wouldn't know much about this, as they are not up with this research and have no training in this field.
Very good observation though!
Your suspicions may be "right on the money"as they say.
However all this must be very overwhelming. Do you have anyone that can act as your health coach, to help you put together a plan of action
and see it through? The medical system WILL NOT do it for you.
It it very dysfunctional in cases like yours- I'm sure you figured this out already.
So, check out my suggestions, research on your own as well
and should you have any questions please let me know.
I didn't mean to bombard you with information. take your time with all this.
Stay strong and keep your focus on your improvement.
You can do this! Step by step.
For more support come and visit also the " Surviving Neurological Limbo Land-No dx" Group.
Take care.
Niko
Hi Decima.
Welcome to the forum.
I can sense your pain and suffering through your words!
There are a few things that need to be explored.
I'll post later ,as I'm at work now, and ask a few questions, if you don't mind.
Hang in there. Your spirit is going to help you pull through this.
Cheers,
Niko
Welcome to the forum.
I can sense your pain and suffering through your words!
There are a few things that need to be explored.
I'll post later ,as I'm at work now, and ask a few questions, if you don't mind.
Hang in there. Your spirit is going to help you pull through this.
Cheers,
Niko
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