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SEEN 10 DOCTORS, ALL TELL US WE ARE A MEDICAL MYSTERY?? PLEASE HELP!
I'm DESPERATE, I've seen 10 doctors and I have been told I am a medical mystery. I'm going to try and make this as brief as possible. I'm 25 (165 lbs), my health had been good for years. On October 14th 2006, I was traveling for work, I was in NYC in a hotel. I woke up the next morning and my life has never been the same. All my symptoms started on 10/15/2006. Since all my symptoms started, I had a short 1 year relationship with someone, we were tested for all STDS (HIV etc) before becoming sexually active, after we had sex they too developed the same exact symptoms! Then that relationship ended and a year later I met my current fiancee, we both also got tested for STDs, all came back normal.. 2 days after we became sexually active, they also developed the same symptoms! I noticed a pattern but doctors didn't seem to know what was happening. Before October 14, 2006 I was on Minocycline 100mg 2x day for about 5 years for moderate acne, while on the anti-biotic I never caught colds and never felt sick. I stopped the Minocycline for good on October 1st 2006, but before I stopped it In September of 2006 (a month before the all symptoms started) I started to develop an orange coating on the back of my tongue that would alternate between orange and white depending on the day, I could brush it off, but it would come back hours later again. All my other symptoms that started in 10/2006 are as follows.. I caution you it's very long and I tried to be detailed, these symptoms are all shared by my fiancee and old ex, and the symptoms only started after we became sexually active, even after negative STD results, they also developed the same tongue coating!
1. Head pressure - Random at times often followed by blurred vision and confusion.
2. Acne - When I stopped the minocycline in 10/2006 my skin began to break out again like back in my teens, I can keep it under control if I avoid sugar and or greasy foods and follow a strict diet.
3. Boils - I began to keep a journal, if I consumed Soy, Cottonseed oil, Safflower oil, Soybean Oil, Palm oil, Processed sugar (organic sugar does not seem to cause this) etc. within hours I would get large painful boils on my back and chest that would take weeks to heal. If I eat any fruit I get the boils specifically on the back of my neck?!? Just to re-iterate, all the following symptoms started at the same time in October, 2006:
4. Cold hands and feet - In 2009 I began taking Niacin to help correct this, I understand it's a vaso-dialator but if I don't take it my hands and feet become ICE cold again and numb.
5. Sinus pressure - My sinus's become stuffed and it's almost impossible to breathe through my nose, I also feel pressure in my upper jaw, around my eyes, and temples. This is random and I can sometimes go weeks without this symptom, but it has been ongoing for years now. Interestingly, my fiancee and I will sometimes wake up with the exact feeling of head pressure, and it's always when it starts raining?!??
6. Depression/Anxiety/Brain Fog/Confusion - Since that day I woke up in October 2006, it's as though I woke up to a different world, there was no real stress going on in my life and I suddenly felt as though I was in an altered state of consciousness.. This has never changed and I have felt like this everday of my life since 2006. I've tried L-Theanine, L-Tryptophan, 5HTP, Sam-E, Etc. Nothing helped. I tried marijuana out of desperation and it will remove the brain fog, head pressure, and anxiety only temporarily (2 hours of relief), I do not like being dependant on anything so I do not actively use marijuana, it was sad that marijuana seemed to be the only thing that stopped the anxiety.
7. Alternating constipation - On and off, it takes me about 30 minutes to have a bowel movement, there is no pain, only occassional bleeding (spotting) if I force it to come out if I am in a rush.
8. Coated tongue/Phlegm - I have noticed that when my symptoms are at it's worst, the tongue coating is the thickest, also there is very thick phlegm in my throat/esophagus, I always feel as though I have a large ball of phlegm in my throat and I can always cough up thick phlegm no matter how much water I drink. I also cough up "curds".. white balls suspended in saliva, I also cough up tonsiliths, the the small white balls that smell putrid. Conventional doctors said my coating does not look like thrush it doesn't resemble cottage cheese just a coating on the back of the tongue and sometimes it covers my entire tongue. It varies from day to day. I went to a few alternative doctors who said it is candida in my mouth due to all the antibiotics I was on for so long and they said that is why the coating came a month before ALL these symptoms started. They believe the candida is systemic caused by mold exposure in my adolescence and high prolonged antibiotic use.
9. Food Intolerance - I started feeling bloated and get gas EVERY single time I ate food no matter what it was, it was as though nothing was agreeing with me. My hair became brittle, dry, and I noticed alot of it was falling out after I took showers.
1. Head pressure - Random at times often followed by blurred vision and confusion.
2. Acne - When I stopped the minocycline in 10/2006 my skin began to break out again like back in my teens, I can keep it under control if I avoid sugar and or greasy foods and follow a strict diet.
3. Boils - I began to keep a journal, if I consumed Soy, Cottonseed oil, Safflower oil, Soybean Oil, Palm oil, Processed sugar (organic sugar does not seem to cause this) etc. within hours I would get large painful boils on my back and chest that would take weeks to heal. If I eat any fruit I get the boils specifically on the back of my neck?!? Just to re-iterate, all the following symptoms started at the same time in October, 2006:
4. Cold hands and feet - In 2009 I began taking Niacin to help correct this, I understand it's a vaso-dialator but if I don't take it my hands and feet become ICE cold again and numb.
5. Sinus pressure - My sinus's become stuffed and it's almost impossible to breathe through my nose, I also feel pressure in my upper jaw, around my eyes, and temples. This is random and I can sometimes go weeks without this symptom, but it has been ongoing for years now. Interestingly, my fiancee and I will sometimes wake up with the exact feeling of head pressure, and it's always when it starts raining?!??
6. Depression/Anxiety/Brain Fog/Confusion - Since that day I woke up in October 2006, it's as though I woke up to a different world, there was no real stress going on in my life and I suddenly felt as though I was in an altered state of consciousness.. This has never changed and I have felt like this everday of my life since 2006. I've tried L-Theanine, L-Tryptophan, 5HTP, Sam-E, Etc. Nothing helped. I tried marijuana out of desperation and it will remove the brain fog, head pressure, and anxiety only temporarily (2 hours of relief), I do not like being dependant on anything so I do not actively use marijuana, it was sad that marijuana seemed to be the only thing that stopped the anxiety.
7. Alternating constipation - On and off, it takes me about 30 minutes to have a bowel movement, there is no pain, only occassional bleeding (spotting) if I force it to come out if I am in a rush.
8. Coated tongue/Phlegm - I have noticed that when my symptoms are at it's worst, the tongue coating is the thickest, also there is very thick phlegm in my throat/esophagus, I always feel as though I have a large ball of phlegm in my throat and I can always cough up thick phlegm no matter how much water I drink. I also cough up "curds".. white balls suspended in saliva, I also cough up tonsiliths, the the small white balls that smell putrid. Conventional doctors said my coating does not look like thrush it doesn't resemble cottage cheese just a coating on the back of the tongue and sometimes it covers my entire tongue. It varies from day to day. I went to a few alternative doctors who said it is candida in my mouth due to all the antibiotics I was on for so long and they said that is why the coating came a month before ALL these symptoms started. They believe the candida is systemic caused by mold exposure in my adolescence and high prolonged antibiotic use.
9. Food Intolerance - I started feeling bloated and get gas EVERY single time I ate food no matter what it was, it was as though nothing was agreeing with me. My hair became brittle, dry, and I noticed alot of it was falling out after I took showers.
Hi, well what a post, it sounds to me like you are suffering with systemic candida, and to get rid of this condition, takes a lot of time, and true committment to avoiding sugar and yeast,
The problems candida can cause are awful and debilitating, especially if you have a weak immune system as well.
You might need more anti -fungals, to try to at least bring this under control, and the die off period can be worse than he candida, causing a range off awful symptoms.
Candida can go on to cause allergies, and another condition alongside candida is leaky gut.
Try plenty of pro=biotics, and five-lac is very good. also a good garlic supplement is a good anti-fungal, and acidophillus, and grapefruit seed.
Also yeast infections, can come with abnormal hormone balance in he body, have you been checked for diabetes? and had a full hormone panel done?
Also an Ige for allergies,
They say it takes a long time to feel better, but in the long run, im sure it eases the candida overgrowth.
There is a good website candida uk, which may be valuable to you.
Hope this is off some help.
Nicola.
The problems candida can cause are awful and debilitating, especially if you have a weak immune system as well.
You might need more anti -fungals, to try to at least bring this under control, and the die off period can be worse than he candida, causing a range off awful symptoms.
Candida can go on to cause allergies, and another condition alongside candida is leaky gut.
Try plenty of pro=biotics, and five-lac is very good. also a good garlic supplement is a good anti-fungal, and acidophillus, and grapefruit seed.
Also yeast infections, can come with abnormal hormone balance in he body, have you been checked for diabetes? and had a full hormone panel done?
Also an Ige for allergies,
They say it takes a long time to feel better, but in the long run, im sure it eases the candida overgrowth.
There is a good website candida uk, which may be valuable to you.
Hope this is off some help.
Nicola.
also, we both randomly sometimes get a "tickle" feeling in the upper part of our head when the head pressure is active, almost feeling like something is moving around
Continued...
10. Sensitivity to Vitamins - We have tried DOZENS of vitamins, natural, organic, conventional, you name it, I kept a close journal and realized every time we took a multivitamin, if it contained vitamin A (either Beta Carotene, or Vitamin A Palmitate) it didn't matter which type of vitamin A, I would get HUGE boils on my back, chest, arms, and jawline, my skin would also dry out completely and within 24 hours my skin would literally FLAKE off like hyper exfoliation. I also noticed if I took a multi-vitamin containing Vitamin B12 or B5 the same reaction would happen, even in low low doses.. and even if I took vitamins that didn't contain B12 ot Vitamin A I would still feel extremely fatigued and horribly sick within hours, even taking them with digestive enzymes and food doesn't help.
11. Sensitivity to sound and fragrances - I suddenly became sensitive to all sound, I could hear frequencies other people couldn't, a buzz sound from a fluorescent light was debilitating, smells gave me mood swings, rapid violent angry mood swings, someones perfume would suddenly spark a fit of confusion, blurred vision, and mood swings.
12. Fatigue - We sometimes sleep 14 hours and do not feel rested, I get tired extremely easily now, and after I eat even a small meal, forget it, I need to sleep for hours.
13. Water - I found that drinking FIJI brand water made some of my symptoms go away temporarily. I experimented with this and found that normal spring water did not help the symptoms. I came to find that FIJI water contains 85MG of colloidal silica per liter. Was the silica helping my symptoms be less severe? I read that silica almost works like a detoxer.
14. Hot flashes/sensitivity to hot/cold - When we eat sugar we get hot flashes, cold sweats, hot sweats, but it seems random and the hot flashes are worse when our tongue coating is at its strongest coating.
A temporary remedy - Through trial and error I found that taking Colostrum (IGG containing supplement), Chlorella, niacin (for the cold hands and feet), made my fatigue much less, and cleared up my skin, as long as I followed a natural diet. If I ate red meat and or pork I would get boils on my back within hours and if I ate steak, it was a much faster response, within 35 minutes of eating steak I would get a dime sized red flat mark between my eyebrows that would fade gradually over 7 days. I tested this theory with the steak. Everytime I ate steak..flat, red, dime-sized mark between my eyebrows???.. What in the world could cause this? Hormones in the meat? This wasn't a food allergy my throat wasn't closing up. One of my doctors insisted it was systemic candida yet there was no blood work to prove this, they put us on nystatin for months, the tongue coating never went away and we felt worse, we tried the fabled "candida diet", we felt 10x worse. Finally we did a few rounds of diflucan with liver testing in between refills. We felt like we were literally dying in the first 2 weeks as every symptom was 100x worse. My doc recommended I take activated charcoal to help absorb the supposed "die off" that was occuring from the candida. Interestingly, my skin became crystal clear, no boils, even the tongue coating started to disapear. A month after stopping diflucan, the coating came back and the symptoms are even worse than before! They have tested us for everything from Thyroid T3, T4, TSH, Free T3 & T4, Cortisol, IGG, IGH, HIV, all STDS, ACTH, Lyme Disease, Sedementation tests, etc. All tests came back normal, including the immunity test, I thought surely my immune system must be compromised. My sister and alot of people in my family have a pituitary tumor, thyroid disorders, and adrenal disorder, but all the blood work related to those conditions are negative, and even if it was positive how would that explain how my fiancee and my old ex contracted this mystery illness from me after sex? The most important issue of all this is how my fiancee developed ALL the same symptoms as I did. Interestingly when were both young we lived in the basements of our parents house where we were both exposed to massive amounts of mold (black & green) for about 5 years each. The mold was thick in our old bedrooms and you could see it on the walls. The doctors think the mold exposure mixed with antibiotics created a breeding ground for candida. I wanted scientific proof so they did a culture on our tongues to test it for candida, it came back negative! Why would it be negative if the coating appears when all our symptoms are at it's worst? Why did my fiancee and my old ex develop ALL these specific symptoms only after they had sex with me? We have no stds, blood work for both of us looks normal, yet all these symptoms exist. We thought it might be the environment so we moved, symptoms stayed and have not improved. The one thing we both know for sure if that sugar consumption in any way, bread, candy, ice cream, alcohol, (organic sugar causes a mild increase), massively increases the severity of ALL symptoms. We've been tested for diabetes that is negative as well! We've both even become synchronized were when my head pressure is at it's worst, so is my fiancee's!.. What the hell is going on with us? No one seems to know. We both stay up until 5am everynight because we don't get tired before then, we both sleep till about 1:30pm and work 2-10pm. We've also had allergy testing, interestingly enough Soy, cottonseed etc. All came up as allergens which I knew I had before I got tested. The only symptom my fiancee doesn't seem to get as bad as me are the boils. If they get them they are not as bad as mine are and often only last a day or so where as mine last for weeks. But were both sensitive to vitamins, have cold hands, feet, depression, anxiety mood swings, etc.. & this all started for my fiancee after sexual intercourse, same as my ex. Were both in a very happy. calm relationship, we do have random disagreements (who doesn't?) but nothing warranting anxiety. I have felt as though my mind has been living in a dream world, detached, confused, with severe brain fog since 10/2006, my fiancee now feels the same way after we had sex, they said they had horrible head pressure a few days after we had sex the first time and woke up the next day with all the same symptoms. Did I transmit something to my partner, and to my partner from the past? Why isn't anything detectable through blood work and why do the doctors all say "I don't know whats wrong with you two"?. Are they missing some key tests? The symptoms seem to be getting worse every month and sometimes we both stay in bed all day and sleep 15 hours wasting the day till 8pm at night and it's like we can't even get out of bed were so fatigued. The only thing keeping the symptoms slightly at bay at the moment is that we are still taking activated charcoal. We don't want to take it long term, but why should have to? If the charcoal absorbs toxins etc. What is it absorbing that alleviates our symptoms? If we stop taking the charcoal for just one night, the next day the symptoms are all back full force and sometimes worse!
PLEASE GOD HELP US
10. Sensitivity to Vitamins - We have tried DOZENS of vitamins, natural, organic, conventional, you name it, I kept a close journal and realized every time we took a multivitamin, if it contained vitamin A (either Beta Carotene, or Vitamin A Palmitate) it didn't matter which type of vitamin A, I would get HUGE boils on my back, chest, arms, and jawline, my skin would also dry out completely and within 24 hours my skin would literally FLAKE off like hyper exfoliation. I also noticed if I took a multi-vitamin containing Vitamin B12 or B5 the same reaction would happen, even in low low doses.. and even if I took vitamins that didn't contain B12 ot Vitamin A I would still feel extremely fatigued and horribly sick within hours, even taking them with digestive enzymes and food doesn't help.
11. Sensitivity to sound and fragrances - I suddenly became sensitive to all sound, I could hear frequencies other people couldn't, a buzz sound from a fluorescent light was debilitating, smells gave me mood swings, rapid violent angry mood swings, someones perfume would suddenly spark a fit of confusion, blurred vision, and mood swings.
12. Fatigue - We sometimes sleep 14 hours and do not feel rested, I get tired extremely easily now, and after I eat even a small meal, forget it, I need to sleep for hours.
13. Water - I found that drinking FIJI brand water made some of my symptoms go away temporarily. I experimented with this and found that normal spring water did not help the symptoms. I came to find that FIJI water contains 85MG of colloidal silica per liter. Was the silica helping my symptoms be less severe? I read that silica almost works like a detoxer.
14. Hot flashes/sensitivity to hot/cold - When we eat sugar we get hot flashes, cold sweats, hot sweats, but it seems random and the hot flashes are worse when our tongue coating is at its strongest coating.
A temporary remedy - Through trial and error I found that taking Colostrum (IGG containing supplement), Chlorella, niacin (for the cold hands and feet), made my fatigue much less, and cleared up my skin, as long as I followed a natural diet. If I ate red meat and or pork I would get boils on my back within hours and if I ate steak, it was a much faster response, within 35 minutes of eating steak I would get a dime sized red flat mark between my eyebrows that would fade gradually over 7 days. I tested this theory with the steak. Everytime I ate steak..flat, red, dime-sized mark between my eyebrows???.. What in the world could cause this? Hormones in the meat? This wasn't a food allergy my throat wasn't closing up. One of my doctors insisted it was systemic candida yet there was no blood work to prove this, they put us on nystatin for months, the tongue coating never went away and we felt worse, we tried the fabled "candida diet", we felt 10x worse. Finally we did a few rounds of diflucan with liver testing in between refills. We felt like we were literally dying in the first 2 weeks as every symptom was 100x worse. My doc recommended I take activated charcoal to help absorb the supposed "die off" that was occuring from the candida. Interestingly, my skin became crystal clear, no boils, even the tongue coating started to disapear. A month after stopping diflucan, the coating came back and the symptoms are even worse than before! They have tested us for everything from Thyroid T3, T4, TSH, Free T3 & T4, Cortisol, IGG, IGH, HIV, all STDS, ACTH, Lyme Disease, Sedementation tests, etc. All tests came back normal, including the immunity test, I thought surely my immune system must be compromised. My sister and alot of people in my family have a pituitary tumor, thyroid disorders, and adrenal disorder, but all the blood work related to those conditions are negative, and even if it was positive how would that explain how my fiancee and my old ex contracted this mystery illness from me after sex? The most important issue of all this is how my fiancee developed ALL the same symptoms as I did. Interestingly when were both young we lived in the basements of our parents house where we were both exposed to massive amounts of mold (black & green) for about 5 years each. The mold was thick in our old bedrooms and you could see it on the walls. The doctors think the mold exposure mixed with antibiotics created a breeding ground for candida. I wanted scientific proof so they did a culture on our tongues to test it for candida, it came back negative! Why would it be negative if the coating appears when all our symptoms are at it's worst? Why did my fiancee and my old ex develop ALL these specific symptoms only after they had sex with me? We have no stds, blood work for both of us looks normal, yet all these symptoms exist. We thought it might be the environment so we moved, symptoms stayed and have not improved. The one thing we both know for sure if that sugar consumption in any way, bread, candy, ice cream, alcohol, (organic sugar causes a mild increase), massively increases the severity of ALL symptoms. We've been tested for diabetes that is negative as well! We've both even become synchronized were when my head pressure is at it's worst, so is my fiancee's!.. What the hell is going on with us? No one seems to know. We both stay up until 5am everynight because we don't get tired before then, we both sleep till about 1:30pm and work 2-10pm. We've also had allergy testing, interestingly enough Soy, cottonseed etc. All came up as allergens which I knew I had before I got tested. The only symptom my fiancee doesn't seem to get as bad as me are the boils. If they get them they are not as bad as mine are and often only last a day or so where as mine last for weeks. But were both sensitive to vitamins, have cold hands, feet, depression, anxiety mood swings, etc.. & this all started for my fiancee after sexual intercourse, same as my ex. Were both in a very happy. calm relationship, we do have random disagreements (who doesn't?) but nothing warranting anxiety. I have felt as though my mind has been living in a dream world, detached, confused, with severe brain fog since 10/2006, my fiancee now feels the same way after we had sex, they said they had horrible head pressure a few days after we had sex the first time and woke up the next day with all the same symptoms. Did I transmit something to my partner, and to my partner from the past? Why isn't anything detectable through blood work and why do the doctors all say "I don't know whats wrong with you two"?. Are they missing some key tests? The symptoms seem to be getting worse every month and sometimes we both stay in bed all day and sleep 15 hours wasting the day till 8pm at night and it's like we can't even get out of bed were so fatigued. The only thing keeping the symptoms slightly at bay at the moment is that we are still taking activated charcoal. We don't want to take it long term, but why should have to? If the charcoal absorbs toxins etc. What is it absorbing that alleviates our symptoms? If we stop taking the charcoal for just one night, the next day the symptoms are all back full force and sometimes worse!
PLEASE GOD HELP US
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