Aa
Possible Auto Immune problem? No diagnosis
Hi all,
I would like to share my story in hopes someone here may be able to give me some guidance, or have had a similar experience.
Chronic constipation starting in October 2013 (bowel movements have not been the same since)
Root canal in November
Pregnancy in December( Started to feel spaced out, sort of like a drunk feeling/sensitivity to artificial lighting)
Miscarried after only 2 weeks, and felt ok for 3 weeks, and then randomly one day the spaced out/drunk feeling/artificial lighting sensitivity came back and has been constant since January (8 months)
I saw a gastro in February who found yeast overgrowth in my stool. He gave me nystatin, and my symptoms never changed. Started researching yeast, and was certain it was causing my issues. I went on a strict diet, and found a doctor who put me on nystatin/diflucan for a month, and i had no relief in symptoms.
Things i have tested for:
Thyroid-Fine
Diabetes-Negative (Although blood sugar slightly out of range)
General blood testing- Ok (neutrophils that fight bacteria 2 points out of range at last blood test), overall white blood count within range
CT head scan-Normal
Food allergy testing shows no allergies
Doctor has tried (Metronidazole)Makes symptoms 10x worse
Nystatin and diflucan make symptoms feel 10x worse
GP a while ago said i had a sinus infection. I had some post nasal drip and my nose runs a bit), so she gave me ceftin- This also made my symptoms feel 10x worse.
Western Blot for lyme-Negative
Symptoms
Constant drunk/high feeling
Lack of focus/ Poor memory
Loss of libido
Bouts of fatigue
Light sensitivity (Not so bad outside in natural light, much worse with indoor lighting) It feels like when you first wake up and turn a lamp on, but my eyes never adjust to the light, and it is constant.
Sound sensitivity
Head pressure around temples and eyes pressure sometimes
Stabbing sensations sometimes at temples
Undigested food in stools
Hard pellet stools/ mucus in stools
Carbs/Sugar/Caffeine make drunk feeling worse
Random itching over skin but with no rash
Heavy feeling eyes/Sometimes feel very sleepy after food
Feel at best first thing in the morning
Sneezing/runny nose
Post nasal drip (constant feeling of build up in throat)
Sore tip of tongue, sometimes middle/back area of tongue slightly white coated
Itchy anus/itching inside ears/nose
Chronic vaginal yeast infections/vaginal itching
Acid Reflux
Heartburn
Cold hands and feet sometimes
Tingling in hands and feet
Stabbing sensations over body
Recently chronic sore throat- Hurts to swallow/Swollen lymph nodes in neck
Recently doctor told me i have a heart murmur
Had a food sensitivity test that showed no food sensitivities, but a high IgE
Random body twitching all over. (in eyes, stomach, back, legs, and feet)
Urgency/frequency of urination- Saw urologist who saw no infection present, and did a cystoscopy which showed no issues with the bladder. Urologist suspects possible chronic cystitis
Stiff feeling hands
Back pain middle/lower area- stabbing sensations sometimes
Nausea sometimes
Tummy pain/bloating sometimes
Chest pain sometimes
Extremely achy neck most of the time
Motion sickness I never had before this started
Random vertigo, especially when tilting head
Positive test for Epstein Barr Virus
I want to have hope, but I am losing it rapidly. They did an ultrasound of my abdomen and found I have gallstones. The doctor called me and also said I have fatty liver which really scared me, because I know fatty liver can cause some threatening complications. I am only 25, and I feel helpless.
These past few weeks i have also had this weird sensation in my legs which is hard to explain. It is in the calf muscles. Stabbing sensations, pain, tingling, and sometimes it even feels like my legs are heavy and shaky to walk on.
I saw my Dr who told me: ANA and RA tests were negative, my cd57 (measuring immune health was 64), she said this is pretty low seems most healthy immune systems are 180+, and my ATP(energy to cells was 19), she said she likes to see this at 30.
My doctor also did a neuropathy test due to the tingling etc and said that my numbers are in the 80's, but should be in the 100's, so i have neuropathy, but we don't really know why yet. She gave me ATP fuel which has helped significantly with the weird sensations, but i still get some tingling/weird vibrations in my feet. I am a bit upset that she has not done more tests as it seems my immune health is very poor. She suspects fibro/cfs but i believe there is more to this. I know this is a lot to take in, but has anyone else had a similar experience? I thought auto immune but my ANA was negative
I would like to share my story in hopes someone here may be able to give me some guidance, or have had a similar experience.
Chronic constipation starting in October 2013 (bowel movements have not been the same since)
Root canal in November
Pregnancy in December( Started to feel spaced out, sort of like a drunk feeling/sensitivity to artificial lighting)
Miscarried after only 2 weeks, and felt ok for 3 weeks, and then randomly one day the spaced out/drunk feeling/artificial lighting sensitivity came back and has been constant since January (8 months)
I saw a gastro in February who found yeast overgrowth in my stool. He gave me nystatin, and my symptoms never changed. Started researching yeast, and was certain it was causing my issues. I went on a strict diet, and found a doctor who put me on nystatin/diflucan for a month, and i had no relief in symptoms.
Things i have tested for:
Thyroid-Fine
Diabetes-Negative (Although blood sugar slightly out of range)
General blood testing- Ok (neutrophils that fight bacteria 2 points out of range at last blood test), overall white blood count within range
CT head scan-Normal
Food allergy testing shows no allergies
Doctor has tried (Metronidazole)Makes symptoms 10x worse
Nystatin and diflucan make symptoms feel 10x worse
GP a while ago said i had a sinus infection. I had some post nasal drip and my nose runs a bit), so she gave me ceftin- This also made my symptoms feel 10x worse.
Western Blot for lyme-Negative
Symptoms
Constant drunk/high feeling
Lack of focus/ Poor memory
Loss of libido
Bouts of fatigue
Light sensitivity (Not so bad outside in natural light, much worse with indoor lighting) It feels like when you first wake up and turn a lamp on, but my eyes never adjust to the light, and it is constant.
Sound sensitivity
Head pressure around temples and eyes pressure sometimes
Stabbing sensations sometimes at temples
Undigested food in stools
Hard pellet stools/ mucus in stools
Carbs/Sugar/Caffeine make drunk feeling worse
Random itching over skin but with no rash
Heavy feeling eyes/Sometimes feel very sleepy after food
Feel at best first thing in the morning
Sneezing/runny nose
Post nasal drip (constant feeling of build up in throat)
Sore tip of tongue, sometimes middle/back area of tongue slightly white coated
Itchy anus/itching inside ears/nose
Chronic vaginal yeast infections/vaginal itching
Acid Reflux
Heartburn
Cold hands and feet sometimes
Tingling in hands and feet
Stabbing sensations over body
Recently chronic sore throat- Hurts to swallow/Swollen lymph nodes in neck
Recently doctor told me i have a heart murmur
Had a food sensitivity test that showed no food sensitivities, but a high IgE
Random body twitching all over. (in eyes, stomach, back, legs, and feet)
Urgency/frequency of urination- Saw urologist who saw no infection present, and did a cystoscopy which showed no issues with the bladder. Urologist suspects possible chronic cystitis
Stiff feeling hands
Back pain middle/lower area- stabbing sensations sometimes
Nausea sometimes
Tummy pain/bloating sometimes
Chest pain sometimes
Extremely achy neck most of the time
Motion sickness I never had before this started
Random vertigo, especially when tilting head
Positive test for Epstein Barr Virus
I want to have hope, but I am losing it rapidly. They did an ultrasound of my abdomen and found I have gallstones. The doctor called me and also said I have fatty liver which really scared me, because I know fatty liver can cause some threatening complications. I am only 25, and I feel helpless.
These past few weeks i have also had this weird sensation in my legs which is hard to explain. It is in the calf muscles. Stabbing sensations, pain, tingling, and sometimes it even feels like my legs are heavy and shaky to walk on.
I saw my Dr who told me: ANA and RA tests were negative, my cd57 (measuring immune health was 64), she said this is pretty low seems most healthy immune systems are 180+, and my ATP(energy to cells was 19), she said she likes to see this at 30.
My doctor also did a neuropathy test due to the tingling etc and said that my numbers are in the 80's, but should be in the 100's, so i have neuropathy, but we don't really know why yet. She gave me ATP fuel which has helped significantly with the weird sensations, but i still get some tingling/weird vibrations in my feet. I am a bit upset that she has not done more tests as it seems my immune health is very poor. She suspects fibro/cfs but i believe there is more to this. I know this is a lot to take in, but has anyone else had a similar experience? I thought auto immune but my ANA was negative
Also, just noting that your issues started with a pregnancy. My first flare also started after childbirth (actually nearly 22 years ago) and I remember reading once that often auto immune illnesses develop when women are pregnant because the body recognizes the fetus as an intruder (not the right word but my brain isn't working it's best lately). I just wonder if there is some sort of hormonal/estrogen link to triggering these yeast/immune issues? I keep thinking there has to be some sort of specialists who have knowledge to help us. If anyone knows, I hope they share the info.
If it is any consolation (misery loves company NOT), I am going through similar things but at least you have had your MDs do some additional tests I haven't had. My blood panels show "normal", I have constant dry mouth and have repeat oral yeast infections (opportunistic disease caused by something you have to identify to make them go away I have read) so any MDs I have seen have just passed me off as one of the loonies, while I suffer weird flushing, exhaustion, aching legs, itchy spots and seems similar to a lot of things you have talked about. I don't have a clue where to turn but I understand, if feels like you are living in a private hell (my family had no understanding, nor much empathy about it either). I am trying to do lnoike you, be strict with my diet, no sugar, no high glycemic carbs to starve out the yeast. I have had 3 similar past "flares" which eventually my system re-normalized and that is the only thing that gives me hope to hang on now. A link I can figure out is that one was after childbirth, the next around menopause, now, not sure only I just read that chamomile tea which I have been dosing myself with daily for about 3 years spikes your estrogen levels and is dangerous for people with any gyno type issues (I had a biopsy last year and am waiting for an appointment to recheck. takes months for an MD appt. in my area). I wish someone could find answers for all of us with the mystery body dysfunctions. It makes you full of anxiety, frustrated and feeling so alone having to deal with it. Hang on, hopefully yours will resolve, like my other episodes have done in the past. Really, that is all that is keeping me going at this point.
Hi emzie.
Re: Candida testing.
--Stool testing will show if your levels of yeast are within a "normal" range,
a statistical model, which reflects an average of what is normal for many other people but may not necessarily indicate a level of yeast that is "normal" for your body.
---Blood testing. Besides allergic type of reactions, anti body blood tests will not reveal other types of immune responses and consequences in other body systems outside the blood circulation, which are also possible reactions to increased candida levels.
Light sensitivity causes to be considered are EBV -if still unresolved-, or
due to a complication arising from EBV, such as CFS, neurological issues and more.
I'll take another look at your post and see if I can find something more significant and relevant to this.
Where do you live? I can do a fast check for a Functional Medicine Doctor in your area, but note that most of them won't be covered by insurance.
If I find any links, I'll message you.
Best wishes.
Niko
Re: Candida testing.
--Stool testing will show if your levels of yeast are within a "normal" range,
a statistical model, which reflects an average of what is normal for many other people but may not necessarily indicate a level of yeast that is "normal" for your body.
---Blood testing. Besides allergic type of reactions, anti body blood tests will not reveal other types of immune responses and consequences in other body systems outside the blood circulation, which are also possible reactions to increased candida levels.
Light sensitivity causes to be considered are EBV -if still unresolved-, or
due to a complication arising from EBV, such as CFS, neurological issues and more.
I'll take another look at your post and see if I can find something more significant and relevant to this.
Where do you live? I can do a fast check for a Functional Medicine Doctor in your area, but note that most of them won't be covered by insurance.
If I find any links, I'll message you.
Best wishes.
Niko
Thank you Niko. This is all very helpful information. The problem i am running into right now is finding a doctor who takes insurance and who is very open minded, and who is willing to work with me and figure this out, and run many tests such as the ones you have mentioned here. I was seeing a holistic doctor but to be honest i didn't find her helpful and it cost me a lot of money for no results. I am not saying holistic practitioners are not helpful, but in this situation, this doctor definitely was not. One thing i cannot get my head around is the neuropathy and the light sensitivity. If i could take away any symptom it would be the light sensitivity. It is absolutely crazy, and i can't imagine any illness causing such a bizarre symptom. I wish i could
take it away, because it is extremely bothersome. Am i to assume that yeast testing is not accurate? Both a stool test and blood test show no yeast overgrowth. Also, do you by chance know any website where i can find a functional medical doc in my area? I can't seem to find anything on this.
take it away, because it is extremely bothersome. Am i to assume that yeast testing is not accurate? Both a stool test and blood test show no yeast overgrowth. Also, do you by chance know any website where i can find a functional medical doc in my area? I can't seem to find anything on this.
Hi emzie.
You sure have a lot of issues which paradoxically should help narrow down the search, since you should be looking at systemic conditions and their causes.
Before, I continue, you need to be aware that often, doctors miss critical
facts in diagnosis & treatment, due to flawed tests, ignorance & lack of training, professional bias, and worse of all, adherence to "established" procedures.
So this means that you may have to revisit for example Thyroid -which by the way is very suspect- due to flawed testing TSH, T3 and T4 and instead to get tested for free T3, free t4 AND reverse T3.
Adrenal stress/fatigue is NOT an "established" medical diagnosis-this is beyond me!- which is suspect because of all the unresolved biological stress going on in your body.
Candida (systemic) fungal condition which likely took years to develop, takes many months of comprehensive treatment and strict diet to eliminate.
Your drunken-like symptoms and your fatty liver can be easily to attributed unresolved candida, as your body manufactures it's own alcohol.
Candida helps produce ethanol (alcohol) as a waste byproduct of sugar and yeast fermentation processes in the intestine and anywhere else around the body. (Any source of carbohydrates is considered the same as sugar for this purpose)
As the alcohol is broken down, acetaldehyde is produced, which has toxic effects and it damages your brain and your neurological system, even more than the alcohol does.
Anti-fungals produced die off effects (Jarisch-Herxheimer reaction).
NO wonder you felt it was 10x worse!
I would suggest virgin coconut oil -best natural antifungal- one Tablespoon daily, week one, 2T daily week 2, 3T daily week 3 until you reach 6T for therapeutic purposes and taper down to 4T daily for maintenance after your successful treatment.
Complete avoidance of carbs and all sugars will expedite your recovery.
Veggies are in, alcohol,dairy, yeast, junk foods, artificial sugars are out!
Tough, but doable and once you feel better, then you know it was totally worth the sacrifice!
You will have to stick with this program for many months to see results.
If you have undetected gluten sensitivities, which are easily missed by allergy testing, gluten effects will linger around many months after going GF! Gluten is in shampoos, soy sauce, cosmetics & creams, salad dressings, sauces, soups, play-dough and hundreds of products without being listed as an ingredient.
And please try to de-stress! It just adds a lot more to your already numerous issues.
Listen to meditation CDs with binaural sounds to help you with this.
Probiotics would be very instrumental in your recovery, but they must be the highest quality you can afford!
Undetected nutritional deficiencies like B12, low gastric acid, underlying pathogenic infectious condition-possibly instigated by the root canal- hormonal imbalances ie low thyroid and/or low progesterone (which could help explain your miscarriage) are all very suspect, yet have not been truly ruled out. Low or dysregulated cortisol also.
Obstructive sleep apnea has to be ruled out as well.
Are you a mouth breather? Hyperventilate? This is tricky. look it up.
Do you sleep on your back?
Runny nose, post nasal drip, sore throat could be because of OBA.
I gave you a lot of suggestions and likely, some of the answers you're looking for are within these suggestions.
Unfortunately, the difficulty will be to follow through and get this done effectively.
Your doctors ideally should be supportive allies, to help you with all this,
but judging from the results so far, you cannot count on it.
A good Holistic, Naturopathic or Functional Medicine Doctor, will probably
be your best bet.
I hope this helps and if you need any further information let me know,
however, my comments and suggestions I made here, are not intended to replace medical advice.
Best wishes.
NIko
You sure have a lot of issues which paradoxically should help narrow down the search, since you should be looking at systemic conditions and their causes.
Before, I continue, you need to be aware that often, doctors miss critical
facts in diagnosis & treatment, due to flawed tests, ignorance & lack of training, professional bias, and worse of all, adherence to "established" procedures.
So this means that you may have to revisit for example Thyroid -which by the way is very suspect- due to flawed testing TSH, T3 and T4 and instead to get tested for free T3, free t4 AND reverse T3.
Adrenal stress/fatigue is NOT an "established" medical diagnosis-this is beyond me!- which is suspect because of all the unresolved biological stress going on in your body.
Candida (systemic) fungal condition which likely took years to develop, takes many months of comprehensive treatment and strict diet to eliminate.
Your drunken-like symptoms and your fatty liver can be easily to attributed unresolved candida, as your body manufactures it's own alcohol.
Candida helps produce ethanol (alcohol) as a waste byproduct of sugar and yeast fermentation processes in the intestine and anywhere else around the body. (Any source of carbohydrates is considered the same as sugar for this purpose)
As the alcohol is broken down, acetaldehyde is produced, which has toxic effects and it damages your brain and your neurological system, even more than the alcohol does.
Anti-fungals produced die off effects (Jarisch-Herxheimer reaction).
NO wonder you felt it was 10x worse!
I would suggest virgin coconut oil -best natural antifungal- one Tablespoon daily, week one, 2T daily week 2, 3T daily week 3 until you reach 6T for therapeutic purposes and taper down to 4T daily for maintenance after your successful treatment.
Complete avoidance of carbs and all sugars will expedite your recovery.
Veggies are in, alcohol,dairy, yeast, junk foods, artificial sugars are out!
Tough, but doable and once you feel better, then you know it was totally worth the sacrifice!
You will have to stick with this program for many months to see results.
If you have undetected gluten sensitivities, which are easily missed by allergy testing, gluten effects will linger around many months after going GF! Gluten is in shampoos, soy sauce, cosmetics & creams, salad dressings, sauces, soups, play-dough and hundreds of products without being listed as an ingredient.
And please try to de-stress! It just adds a lot more to your already numerous issues.
Listen to meditation CDs with binaural sounds to help you with this.
Probiotics would be very instrumental in your recovery, but they must be the highest quality you can afford!
Undetected nutritional deficiencies like B12, low gastric acid, underlying pathogenic infectious condition-possibly instigated by the root canal- hormonal imbalances ie low thyroid and/or low progesterone (which could help explain your miscarriage) are all very suspect, yet have not been truly ruled out. Low or dysregulated cortisol also.
Obstructive sleep apnea has to be ruled out as well.
Are you a mouth breather? Hyperventilate? This is tricky. look it up.
Do you sleep on your back?
Runny nose, post nasal drip, sore throat could be because of OBA.
I gave you a lot of suggestions and likely, some of the answers you're looking for are within these suggestions.
Unfortunately, the difficulty will be to follow through and get this done effectively.
Your doctors ideally should be supportive allies, to help you with all this,
but judging from the results so far, you cannot count on it.
A good Holistic, Naturopathic or Functional Medicine Doctor, will probably
be your best bet.
I hope this helps and if you need any further information let me know,
however, my comments and suggestions I made here, are not intended to replace medical advice.
Best wishes.
NIko
I will have to try magnesium as i have not yet done so. Is there a certain brand you would recommend? Have you heard of similar stories to mine? it is tough and i am desperate for some input if anyone things certain symptoms sound like anything they have experienced
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