Aa
Digestive issues for 2 years. 140lb down to 90lb
Hello my name is Ryan I'm 31 years old I don't drink, smoke, use drugs or engage in alternative lifestyles. I'm just a simple guy from a small Texas town and I live a very quiet life. I've been fighting a mystery condition for two years. I've been to many doctors I've had many tests ran and lots of things have been uncovered, but I still do not have a clear diagnosis and I don't know where to go or who to turn to.
Instead of writing a novel I'm going to keep my initial post short and I'm going to withhold information at first so I don't influence your responses. I'm going to list the symptoms I'm experiencing right now and I'd like for you to give me your first impression. I'll explain things and answer questions as we go.
Note: This came from absolutely no where. August 1st, 2013 I was just fine, but by August 31st, 2013 I was fighting for my life and still am. There has been no improvement.
Current Symptoms - 9/8/2015
▪Flu like symptoms
▪Swollen sore tonsils
▪Tonsil stones
▪Red sores in mouth
▪Blood blisters in mouth
▪Swollen lymph nodes
▪Twitchy muscles
▪Weaknesses
▪Painful tendons
▪Difficulty breathing
▪Heart palpitations
▪Dark green stools (no green food is being ingested)
▪Constipation (Drinking lots of water and juice)
▪Cloudy urine with particles
▪Rashes
▪Hair loss on legs
▪Cold legs and ice feet
▪Purple toes
▪Sores on legs
▪Low blood sugar
▪Numbness
▪Dizziness
▪Sore bones
▪Sore joints
▪Food Allergies (that came from no where)
▪Abdominal pain/pressure/discomfort (right side just under the ribs near the sternum and it seems to worsen after some meals, but moving around makes it worse too).
I went from being an active young man taking care of a farm to being bound to a bed for two years. There's more to the story, but this is a good start.
Instead of writing a novel I'm going to keep my initial post short and I'm going to withhold information at first so I don't influence your responses. I'm going to list the symptoms I'm experiencing right now and I'd like for you to give me your first impression. I'll explain things and answer questions as we go.
Note: This came from absolutely no where. August 1st, 2013 I was just fine, but by August 31st, 2013 I was fighting for my life and still am. There has been no improvement.
Current Symptoms - 9/8/2015
▪Flu like symptoms
▪Swollen sore tonsils
▪Tonsil stones
▪Red sores in mouth
▪Blood blisters in mouth
▪Swollen lymph nodes
▪Twitchy muscles
▪Weaknesses
▪Painful tendons
▪Difficulty breathing
▪Heart palpitations
▪Dark green stools (no green food is being ingested)
▪Constipation (Drinking lots of water and juice)
▪Cloudy urine with particles
▪Rashes
▪Hair loss on legs
▪Cold legs and ice feet
▪Purple toes
▪Sores on legs
▪Low blood sugar
▪Numbness
▪Dizziness
▪Sore bones
▪Sore joints
▪Food Allergies (that came from no where)
▪Abdominal pain/pressure/discomfort (right side just under the ribs near the sternum and it seems to worsen after some meals, but moving around makes it worse too).
I went from being an active young man taking care of a farm to being bound to a bed for two years. There's more to the story, but this is a good start.
On a farm?? Work with lots of pesticides and such. I became chemically sensitive about 4 yrs ago. Never had probe in the past using stuff on my plant for bugs or in the house, but all of a sudden I did.
Took 2 years to get diagnosed.
Your symptoms sound so much like mine. Even the bloody sore in throat. Weak, joints ache. Weird bowels. Burning esophagus. Developed neuropathy in my arms and legs, made my feet and hands turn blue and ache. Burning chest and throat. Racing heart, shakiness, exhaustion. Too much to list.
I now find being around any chemicals like cleaning charms, even some soaps and perfumes and make it worse. Even car exhaust, air freshener plugs ins. Makes a diff if I can stay in clean environment. Just using water. Look up MCS
Multiple chemical sensitivty.
Some drs used to think it was all in the head, so did I, they are finding that isn't the case.
Look up environmental illness.
I hope that's not what you have *****.
Took 2 years to get diagnosed.
Your symptoms sound so much like mine. Even the bloody sore in throat. Weak, joints ache. Weird bowels. Burning esophagus. Developed neuropathy in my arms and legs, made my feet and hands turn blue and ache. Burning chest and throat. Racing heart, shakiness, exhaustion. Too much to list.
I now find being around any chemicals like cleaning charms, even some soaps and perfumes and make it worse. Even car exhaust, air freshener plugs ins. Makes a diff if I can stay in clean environment. Just using water. Look up MCS
Multiple chemical sensitivty.
Some drs used to think it was all in the head, so did I, they are finding that isn't the case.
Look up environmental illness.
I hope that's not what you have *****.
Hi Sharin and thanks for your response. My father did spray a lot of herbicides and pesticides around the farm (gallons). He would often spray much more than the necessary amount in high concentration. In this case he hadn't sprayed anything at the time I became sick since he was in the hospital for nearly a month, but while he was away in August 2013 I did spray a small amount of Hot Shot under the eve of the porch because of the wasps. So this is also a possibility.
Note: Before my dad died of "cancer" he had similar symptoms as me. Rashes, flu like symptoms, trouble eating. He kept complaining that it felt like he had a "never ending cold and strep throat." That's what I keep telling doctors about me. Also, the highest concentration of mold was in my dad's bedroom so if it's mold related he would have had the highest exposure and he is deceased now. When my dad got to the stage I'm at right now with my symptoms my dad only lived for three months.
My theory here would be that perhaps we were suffering from mold poisoning and didn't know it, but the stress of my dad's cancer diagnosis may have stunned our system enough to allow the mold and/or fungus to overtake our system. My dad did supposedly die of "bone cancer," but through my research I've found that fungal infections can be mistaken for bone cancer on MRI scans, which is what my dad was having done. Personally I do not for one moment believe my dad died of cancer. It seems as though he died from whatever is killing me.
When this began I went from 140lb down to 90lb, but my dad went from 244lb down to 110lb before he died. I've explained this to doctors and they ignore it completely because dad had "cancer" and was on chemo and radiation. They believe I'm just a hypochondriac mirroring my dad's symptoms.
I've handed my doctors the actual report from the company that tested my house. The company says if I'm sick I should definitely be tested because there are unusually high levels of mold in my house, but doctors have not ran any mold/fungal tests on me. They instead accuse me of printing a fake report from the internet even though it's 100% verifiable. My case has been mishandled by some fairly incompetent doctors.
Note: The chickens were sneezing and in poor health. The chickens, my dad, me, and my cat were all sneezing a lot in the few months prior to everything going to hell. The chickens basically all fell over dead one right after another mysteriously. My dad usually tended the chickens. I only did while he was in the hospital. I don't know if something like bird flu is possible or not. I've been walking around with this for two years whatever it is so I hope it isn't some kind of transmittible disease. I've been in doctors offices, grocery stores, and around small children. I've been living with my mom for a year and now she is getting down very sick. My step dad is doing the rapid sneezing thing too. This is basically a repeat of what happened to me and my dad on the farm. So I hope this isn't something transmittible. Doctors are not listening to me or taking anything I say seriously. They aren't running tests because they do not believe there's anything to find. They've even accused me of starving myself or doing something to myself intentionally for attention. So the doctors I've seen have fallen off the deep end. Instead of swallowing their pride and admitting they don't know what this is they would rather blame me.
I do live in Texas near Dallas where ebola first broke out in the United States so doctors here do miss big things on an unimaginably incompetent level. For example, one week before my dad was diagnosed with cancer he was diagnosed with a pulled muscle in his neck first. So my dad's diagnosis went from "pulled muscle in neck" to "terminal cancer with not long to live."
I do not trust the doctors here.
I'm about to reply to Niko and I'll provide a few more details, but poison is a possibility. So is mold/fungus and a dozen other things. Unfortunately...
Thanks,
Ryan
Note: Before my dad died of "cancer" he had similar symptoms as me. Rashes, flu like symptoms, trouble eating. He kept complaining that it felt like he had a "never ending cold and strep throat." That's what I keep telling doctors about me. Also, the highest concentration of mold was in my dad's bedroom so if it's mold related he would have had the highest exposure and he is deceased now. When my dad got to the stage I'm at right now with my symptoms my dad only lived for three months.
My theory here would be that perhaps we were suffering from mold poisoning and didn't know it, but the stress of my dad's cancer diagnosis may have stunned our system enough to allow the mold and/or fungus to overtake our system. My dad did supposedly die of "bone cancer," but through my research I've found that fungal infections can be mistaken for bone cancer on MRI scans, which is what my dad was having done. Personally I do not for one moment believe my dad died of cancer. It seems as though he died from whatever is killing me.
When this began I went from 140lb down to 90lb, but my dad went from 244lb down to 110lb before he died. I've explained this to doctors and they ignore it completely because dad had "cancer" and was on chemo and radiation. They believe I'm just a hypochondriac mirroring my dad's symptoms.
I've handed my doctors the actual report from the company that tested my house. The company says if I'm sick I should definitely be tested because there are unusually high levels of mold in my house, but doctors have not ran any mold/fungal tests on me. They instead accuse me of printing a fake report from the internet even though it's 100% verifiable. My case has been mishandled by some fairly incompetent doctors.
Note: The chickens were sneezing and in poor health. The chickens, my dad, me, and my cat were all sneezing a lot in the few months prior to everything going to hell. The chickens basically all fell over dead one right after another mysteriously. My dad usually tended the chickens. I only did while he was in the hospital. I don't know if something like bird flu is possible or not. I've been walking around with this for two years whatever it is so I hope it isn't some kind of transmittible disease. I've been in doctors offices, grocery stores, and around small children. I've been living with my mom for a year and now she is getting down very sick. My step dad is doing the rapid sneezing thing too. This is basically a repeat of what happened to me and my dad on the farm. So I hope this isn't something transmittible. Doctors are not listening to me or taking anything I say seriously. They aren't running tests because they do not believe there's anything to find. They've even accused me of starving myself or doing something to myself intentionally for attention. So the doctors I've seen have fallen off the deep end. Instead of swallowing their pride and admitting they don't know what this is they would rather blame me.
I do live in Texas near Dallas where ebola first broke out in the United States so doctors here do miss big things on an unimaginably incompetent level. For example, one week before my dad was diagnosed with cancer he was diagnosed with a pulled muscle in his neck first. So my dad's diagnosis went from "pulled muscle in neck" to "terminal cancer with not long to live."
I do not trust the doctors here.
I'm about to reply to Niko and I'll provide a few more details, but poison is a possibility. So is mold/fungus and a dozen other things. Unfortunately...
Thanks,
Ryan
Thank you so much for getting back with me Niko. I am certainly taking everything you mentioned into consideration. I'm writing everything down and I'm going to come up with some kind of plan.
I certainly agree with you that conventional medicine is not going to help me here because many doctors don't seem to think outside the box. Some of the doctors that do give me prescriptions are only treating my symptoms instead of trying to figure out what it is. It's also very clear to me that my doctors are not communicating or sharing information with one another.
My case certainly has a lot of complexities because of all the possible things that could have come from what I was exposed to in a short period of time. I was just trying to get everything done on the farm so when my dad came home from the hospital he wouldn't have to worry about anything. What happened is he came home and a few weeks later his son started dying from some mystery. My dad actually had to carry me into the hospital that one time because I was unable to walk and was shaking really bad. For no reason... All we were doing was sitting at home watching documentaries when some of this would occur. Nothing stressful or bad, but at that time I didn't know I was having allergic reactions to food and I was just trying to eat like I always have.
I believe those first ER visits were due to the beginning stages of anaphylaxis. Trouble breathing, wheezing, throat closing up, numb all over, and shaking. Doctors were misinterpreting it as a panic attack. They would give me something for anxiety and send me home. Most of my ER visits were basically a waste of time and I'm over $80,000 in debt now thanks to all of this.
This last ER visit a few months ago doctors said via x-ray that it looked like feces was stuck to the wall of my large intestines on my right side and new feces is struggling to get past it and that might be what's causing my abdominal pressure, discomfort and pain. Right, I told doctors in the beginning it feels like I have a bowel obstruction, my bowels are filling up, and my stomach isn't emptying. Resulting in not being able to get food and water in me resulting in dehydration and weight-loss. They ignore everything I say though. Instead of possibly giving me an enema or providing any help or just doing some simple investigation once they said it looked like I had a bowel blockage they gave me a shot of morphine (which makes no sense) and discharged me from the hospital.
I did do a follow up with my Gastrologist a week later and I provided him with this information, but since I'm not able to work and have no insurance he wanted to go the cheap route by prescribing me laxatives instead of doing a EGD/Colonoscopy and actually investigate. So if feces was stuck to the wall of my bowel a few months ago it's still there now.
Note: I have had three abdominal CT scans over the past two years that I insisted should happen. One with contrast and two without. The radiologist says all of my organs look normal. No blockages no nothing. No sign of gallstones, kidney stones, or swelling. They say the adrenal glands, spleen, and pancreas all look normal.
I did specifically request a heavy metal test about nine months ago and the tests came back negative. Although I'm not sure if it was just some basic test or if they seriously looked into it because just about every basic test they run keeps coming back "normal" or "within range." They only find things when they run advanced tests and they wouldn't run any advance tests had I not requested it. Had I not insisted on some tests being ran I wouldn't know anything right now.
When I told them to give me an HIV test they actually argued with me against it. Then when the test came back with abnormally low CD-4 counts there was a big HIV scare. All of my doctors were certain that's what this was. When 20+ advanced HIV screenings came back negative doctors basically told me to stop coming to their office as if I'm just wasting their time. Now they are convinced there's nothing to find, which is basically a death sentence for me if this doesn't get identified.
In the past two years I've been prescribed Flovent, BuSpar, Lorazepam, Pantoprazole, and Sucralfate. I took them for a year and got worse. I've also had Amoxicillin in the beginning when they suspected this was just siunitus and I was prescribed Clindamycin by my dentist before having a few teeth removed.
I'm having some kind of sexual issue strongly associated with this. I've had to stop doing anything sexual. I can't even think of anything sexual without a very severe reaction.
I haven't been in a sexual relationship for nearly a decade, but I did masturbate up until a year ago. Gradually masturbation started to cause very serious symptoms. As I begin to climax my heart slows way down, palpitates, I struggle to breathe, I feel pressure in my abdomen, my chest gets tight and my arms and legs go numb. It's followed by a sudden racing heart of 122 BPM or more. The one time I had to have an ambulance because of it and my heart rate was 32 BPM on the monitor. I thought I was going to die. Anything sexual causes my heart to slow down like that. I'm under the impression that if I had an orgasm my heart would actually stop. It's scary enough to cause me to stop anything sexual the past year. I've been masturebaiting twice per day everyday since I was really young and I never had a problem before.
Unfortunately doctors are misinterpreting my symptoms and not listening to me. This sexual problem has gotten me misdiagnosed with General Anxiety Disorder just because of the fast heart rate that occurs afterwards.
One of the first two doctors I went to in 2013 was a Cardiologist and he said everything looked great after running an 24 hour EKG monitor, nuclear stress test, and a sonogram of my heart and the arteries in my neck and abdomen.
The only additional information I can provide is genetic risk factors.
Genetic Risk Factors
▪PT Grandmother - Colon Cancer (deceased)
▪PT Grandfather - Stroke / Alzheimer's (deceased)
▪MT Grandmother - Stroke / Alzheimer's (deceased)
▪MT Grandfather - Prostate Cancer
▪Mother - Basal cell carcinoma / 12lb ovarian cyst.
▪Father - Kidney cancer, bone cancer, liver cancer, polyps in colon, type 2 diabetes, hepatitis (deceased).
▪ Family history of cancer and high blood pressure on my mother's side.
▪ Family history of gallstones/gallbladder failure
and cancer on my father's side.
That's basically everything. It's a nightmare. I'm not ready to die, but I've already started getting all of my affairs in order. I'm trying to stay optimistic, I have to be realistic. Even if they do find it I'll probably suffer from some long term damage from not getting it identified in a timely manner.
Any additional thoughts or ideas from you or anyone else would be appreciated.
Thanks,
Ryan
I certainly agree with you that conventional medicine is not going to help me here because many doctors don't seem to think outside the box. Some of the doctors that do give me prescriptions are only treating my symptoms instead of trying to figure out what it is. It's also very clear to me that my doctors are not communicating or sharing information with one another.
My case certainly has a lot of complexities because of all the possible things that could have come from what I was exposed to in a short period of time. I was just trying to get everything done on the farm so when my dad came home from the hospital he wouldn't have to worry about anything. What happened is he came home and a few weeks later his son started dying from some mystery. My dad actually had to carry me into the hospital that one time because I was unable to walk and was shaking really bad. For no reason... All we were doing was sitting at home watching documentaries when some of this would occur. Nothing stressful or bad, but at that time I didn't know I was having allergic reactions to food and I was just trying to eat like I always have.
I believe those first ER visits were due to the beginning stages of anaphylaxis. Trouble breathing, wheezing, throat closing up, numb all over, and shaking. Doctors were misinterpreting it as a panic attack. They would give me something for anxiety and send me home. Most of my ER visits were basically a waste of time and I'm over $80,000 in debt now thanks to all of this.
This last ER visit a few months ago doctors said via x-ray that it looked like feces was stuck to the wall of my large intestines on my right side and new feces is struggling to get past it and that might be what's causing my abdominal pressure, discomfort and pain. Right, I told doctors in the beginning it feels like I have a bowel obstruction, my bowels are filling up, and my stomach isn't emptying. Resulting in not being able to get food and water in me resulting in dehydration and weight-loss. They ignore everything I say though. Instead of possibly giving me an enema or providing any help or just doing some simple investigation once they said it looked like I had a bowel blockage they gave me a shot of morphine (which makes no sense) and discharged me from the hospital.
I did do a follow up with my Gastrologist a week later and I provided him with this information, but since I'm not able to work and have no insurance he wanted to go the cheap route by prescribing me laxatives instead of doing a EGD/Colonoscopy and actually investigate. So if feces was stuck to the wall of my bowel a few months ago it's still there now.
Note: I have had three abdominal CT scans over the past two years that I insisted should happen. One with contrast and two without. The radiologist says all of my organs look normal. No blockages no nothing. No sign of gallstones, kidney stones, or swelling. They say the adrenal glands, spleen, and pancreas all look normal.
I did specifically request a heavy metal test about nine months ago and the tests came back negative. Although I'm not sure if it was just some basic test or if they seriously looked into it because just about every basic test they run keeps coming back "normal" or "within range." They only find things when they run advanced tests and they wouldn't run any advance tests had I not requested it. Had I not insisted on some tests being ran I wouldn't know anything right now.
When I told them to give me an HIV test they actually argued with me against it. Then when the test came back with abnormally low CD-4 counts there was a big HIV scare. All of my doctors were certain that's what this was. When 20+ advanced HIV screenings came back negative doctors basically told me to stop coming to their office as if I'm just wasting their time. Now they are convinced there's nothing to find, which is basically a death sentence for me if this doesn't get identified.
In the past two years I've been prescribed Flovent, BuSpar, Lorazepam, Pantoprazole, and Sucralfate. I took them for a year and got worse. I've also had Amoxicillin in the beginning when they suspected this was just siunitus and I was prescribed Clindamycin by my dentist before having a few teeth removed.
I'm having some kind of sexual issue strongly associated with this. I've had to stop doing anything sexual. I can't even think of anything sexual without a very severe reaction.
I haven't been in a sexual relationship for nearly a decade, but I did masturbate up until a year ago. Gradually masturbation started to cause very serious symptoms. As I begin to climax my heart slows way down, palpitates, I struggle to breathe, I feel pressure in my abdomen, my chest gets tight and my arms and legs go numb. It's followed by a sudden racing heart of 122 BPM or more. The one time I had to have an ambulance because of it and my heart rate was 32 BPM on the monitor. I thought I was going to die. Anything sexual causes my heart to slow down like that. I'm under the impression that if I had an orgasm my heart would actually stop. It's scary enough to cause me to stop anything sexual the past year. I've been masturebaiting twice per day everyday since I was really young and I never had a problem before.
Unfortunately doctors are misinterpreting my symptoms and not listening to me. This sexual problem has gotten me misdiagnosed with General Anxiety Disorder just because of the fast heart rate that occurs afterwards.
One of the first two doctors I went to in 2013 was a Cardiologist and he said everything looked great after running an 24 hour EKG monitor, nuclear stress test, and a sonogram of my heart and the arteries in my neck and abdomen.
The only additional information I can provide is genetic risk factors.
Genetic Risk Factors
▪PT Grandmother - Colon Cancer (deceased)
▪PT Grandfather - Stroke / Alzheimer's (deceased)
▪MT Grandmother - Stroke / Alzheimer's (deceased)
▪MT Grandfather - Prostate Cancer
▪Mother - Basal cell carcinoma / 12lb ovarian cyst.
▪Father - Kidney cancer, bone cancer, liver cancer, polyps in colon, type 2 diabetes, hepatitis (deceased).
▪ Family history of cancer and high blood pressure on my mother's side.
▪ Family history of gallstones/gallbladder failure
and cancer on my father's side.
That's basically everything. It's a nightmare. I'm not ready to die, but I've already started getting all of my affairs in order. I'm trying to stay optimistic, I have to be realistic. Even if they do find it I'll probably suffer from some long term damage from not getting it identified in a timely manner.
Any additional thoughts or ideas from you or anyone else would be appreciated.
Thanks,
Ryan
Re: slow heart rate and palpitations when climaxing.
It is normal to have slow heart rate (yours was a little too slow perhaps) as the vagus nerve which is responsible for this, engages right after an orgasm, while your higher adrenalin output after sex is stimulating other parts of your heart and your cardiovascular system, possibly causing the temporary tachycardia symptoms (adrenalin has a very short half life).
I suspect an over- stressed vagus nerve and dysregulated adrenals are playing a key role in this.
Within all your suffering, it is good to know that there's no significant organ involvement and that your heart is OK.
Your low CD-4 count has probably due to the flu or other viral infection, at the time of the testing, which caused a temporary CD-4 decline.
Another suggestion, which I forgot to mention is to look into demulcent
herbs, rich in mucilage which can soothe and protect irritated or inflamed internal tissue. Look into aloe vera, slippery elm, licorice and others.
Also look into the GAPS program and SCD (specific carbohydrate diet),
as I feel you will find a wealth of valuable info.
You need to get your digestion and G/I function normalized , to the point where you can absorb and assimilate nutrients and vitamins much more efficiently, from everyday healthy foods.
My 2 cents of wisdom for today: You are what you assimilate and what you eliminate. Not just what you eat!
And you're welcome.
Niko
It is normal to have slow heart rate (yours was a little too slow perhaps) as the vagus nerve which is responsible for this, engages right after an orgasm, while your higher adrenalin output after sex is stimulating other parts of your heart and your cardiovascular system, possibly causing the temporary tachycardia symptoms (adrenalin has a very short half life).
I suspect an over- stressed vagus nerve and dysregulated adrenals are playing a key role in this.
Within all your suffering, it is good to know that there's no significant organ involvement and that your heart is OK.
Your low CD-4 count has probably due to the flu or other viral infection, at the time of the testing, which caused a temporary CD-4 decline.
Another suggestion, which I forgot to mention is to look into demulcent
herbs, rich in mucilage which can soothe and protect irritated or inflamed internal tissue. Look into aloe vera, slippery elm, licorice and others.
Also look into the GAPS program and SCD (specific carbohydrate diet),
as I feel you will find a wealth of valuable info.
You need to get your digestion and G/I function normalized , to the point where you can absorb and assimilate nutrients and vitamins much more efficiently, from everyday healthy foods.
My 2 cents of wisdom for today: You are what you assimilate and what you eliminate. Not just what you eat!
And you're welcome.
Niko
Hi RochRose.
Great advice pursuing insurance free coverage.
I live in Canada, where this is a non issue and therefore don't even think about it when replying to US based members.
The suggestion of a reputable clinic taking charge and figuring this out for Ryan is however, to my humble opinion, very optimistic.
A few points to support my opinion:
1. Lyme disease is NOT recognized as a chronic infection by the IDSA
2. Same for Pathogenic Mycoplasma and it's Co-infections
3. Leaky Gut Syndrome (Intestinal Permeabilty) is NOT an established medical diagnosis. Candida yeast infections (usually precede LGS) are rarely investigated.
4. Adrenal Fatigue is not an established diagnosis until it reaches stage 4
(adrenal failure/insufficiency)
5. Hypothyroidism type 2 (thyroid resistance) is NOT investigated!
Standard tests T3, T4 and TSH cannot detect type 2.
6. Neurological B12 and Folate (methylated forms) levels are not revealed by standard tests.
7. Hypomethylation is NOT in the diagnostic protocol of any specialty. ???
8.Therapy with Natural herbs and supplements (when prescribed medications do not or cannot bring the desired results) cannot be implemented, as it is not within established treatment guidelines.
Often it is illegal/criminal to prescribe a natural therapy.
9. PTSD and other traumatic/emotional imbalances are not considered,
nor investigated. Many conditions have a very strong emotional/stress component and will not resolve, until the emotional imbalance is cleared.
10. Most Autoimmune conditions are considered incurable, therefore only symptom management with drugs is the only treatment available.
I can go on, but I'm sure, I made my point.
My intend is not to be critical, nor negative and under different circumstances, where time and money were not an issue, by all means, this would have been another possible consideration.
Insurance coverage will not cover ALL his expenses, including the expenses of the person accompanying him.
I have no idea what the wait time is in order to get in such a clinic,
but if it is anything like here in Canada, it is very discouraging.
Cheers,
Niko
Great advice pursuing insurance free coverage.
I live in Canada, where this is a non issue and therefore don't even think about it when replying to US based members.
The suggestion of a reputable clinic taking charge and figuring this out for Ryan is however, to my humble opinion, very optimistic.
A few points to support my opinion:
1. Lyme disease is NOT recognized as a chronic infection by the IDSA
2. Same for Pathogenic Mycoplasma and it's Co-infections
3. Leaky Gut Syndrome (Intestinal Permeabilty) is NOT an established medical diagnosis. Candida yeast infections (usually precede LGS) are rarely investigated.
4. Adrenal Fatigue is not an established diagnosis until it reaches stage 4
(adrenal failure/insufficiency)
5. Hypothyroidism type 2 (thyroid resistance) is NOT investigated!
Standard tests T3, T4 and TSH cannot detect type 2.
6. Neurological B12 and Folate (methylated forms) levels are not revealed by standard tests.
7. Hypomethylation is NOT in the diagnostic protocol of any specialty. ???
8.Therapy with Natural herbs and supplements (when prescribed medications do not or cannot bring the desired results) cannot be implemented, as it is not within established treatment guidelines.
Often it is illegal/criminal to prescribe a natural therapy.
9. PTSD and other traumatic/emotional imbalances are not considered,
nor investigated. Many conditions have a very strong emotional/stress component and will not resolve, until the emotional imbalance is cleared.
10. Most Autoimmune conditions are considered incurable, therefore only symptom management with drugs is the only treatment available.
I can go on, but I'm sure, I made my point.
My intend is not to be critical, nor negative and under different circumstances, where time and money were not an issue, by all means, this would have been another possible consideration.
Insurance coverage will not cover ALL his expenses, including the expenses of the person accompanying him.
I have no idea what the wait time is in order to get in such a clinic,
but if it is anything like here in Canada, it is very discouraging.
Cheers,
Niko
Hey everyone! Thanks for the responses! All of the feedback I've been receiving here has been great. I've received more help here the last few days than I ever have at any of the doctors offices I've been to over the past decade.
My main goal with this thread is to just bounce ides around, see if there are any common themes, receive feedback on my thoughts, get an outsiders perspective, and ultimately come up with a plan. I'm currently looking for a holistic doctor near me that might be able to help.
Additional information...
When I first started seeing my PCP he said he's thinking this looks like Lupus. He and nine other medical professionals have over the past two years have suggested I see a rheumatologist. So perhaps I have something like Lupus or Multiple Sclerosis. My Allergist did suggest I see an Immunologist to obtain a better understanding of what my immune system is doing.
The big thing I'm leaning towards is stress as a trigger. In August of 2013 I was emotionally stressed and physically stressed with all the farm work. There is evidence to support Adrenal Fatigue.
What makes my symptoms worse?
▪ Movement - (standing up, lifting, bending).
▪ Sitting up right
▪ Riding in vehicles (going fast) **
▪ Bowel movements
▪ Watching action movies **
▪ Playing intense video games **
▪ Listening to my favorite music **
▪ Intense conversation or debate **
▪ Sudden loud noises **
▪ Stressful situations **
▪ Sexual stimulation **
▪ Doctor visits (anxiety) **
▪ Foods
▪ Anger **
▪ Night
The majority of those triggers deal a lot with the SNS, adrenaline, and other hormones. Any type of stimulation seems to make this worse, which as I've read does occur with Adrenal Fatigue, Adrenal Burnout, Adrenal Insufficiency Syndrome.
To touch on what Niko said some of the problems I'm having with sexual stimulation may be normal, but my body just can't take it at the moment. My body's reaction to that stimulation is very negative. One thing I did forget to mention is that sexual stimulation causes me to break out in a rash on my penis and across my chest, which to me sounds like a very bad hormonal imbalance and that is why I decided to go to an Endocrinologist, but my Endocrinologist would rather argue with me about whether I should even be seeing her rather than listening to me and assessing my symptoms.
That takes me to the insurance and clinics that RockRose suggested. It would be nice if we lived in a perfect world where simply having insurance and going to a facility with highly trained doctors guaranteed you a diagnosis, but it is my experience that unfortunately that's just not the case. My condition has gradually worsened year after year and doctors have gone further and further in the wrong direction.
Money is also a big issue here. I'm unable to work, I don't have insurance, I don't qualify for government aid. I've got a GoFundMe page where I'm taking donations and a lot of people are stepping up to give me some advice about programs and such, but I'm living with family and on these aid applications it asks "what is the total income of the household?" Even though we're in poverty my step dad brings in enough money to disqualify me for help.
If this is stress induced Adrenal Fatigue, what type of treatment options are there? Also, during the two years of researching my symptoms I've found evidence that mold/fungal infections can damage the adrenal glands and cause problems. I've looked into adrenal crisis and it sounds a lot like some of what happens when this suddenly intensifies.
Additional details
▪When I was born the umbilical cord was wrapped around my throat. My mom said my o2 sat dropped down in the 20s and I was the deepest blue she had ever seen a human being. I do have learning disabilities and I stuttered as a child.
▪I was diagnosed with scoliosis as a child. You can really tell now that I've lost so much weight.
▪I had a massive head injury in 2002 and never got medical attention. I can still feel where it dented the back of my skull in. I've had trouble seeing ever since. Doctors have never looked into this, but I do know that head injuries can lead to conditions like ALS. Just after I hit my head I lost the ability to see in the seconds after. I never lost consciousness, but my vision faded to black. It was like that for about 30 seconds and my vision returned then slowly faded to solid white. When my vision came back it wasn't normal after that. I had to get glasses the same month I hit my head, but the glasses don't help. Not long after that I began having significant memory issues, involuntary muscle movements, insomnia and a list of symptoms that eventually sent me to doctors in 2004 and they initially thought I had a stroke because I was having speech problems and I could only say 4-5 words and I would forget what I was talking about. My speech was very choppy.
Then in mid 2005 one morning while making breakfast I fell to the floor of my mom's kitchen (I have no memory of this). My mom being a nurse rushed in to tend to me. When I woke up she told me she has no doubt that I was having a seizure. She said my eyes were rolled back in my head and my entire body was shaking. After that seizure I got much of my memory back and regained more control over my body, but I would lose my balance still and drop things a lot. I often wonder if this is possibly causing problems. It did change my personality and some details about me changed as well. Apparently my favorite color was red before my head injury. I have no memory of that. As far as I can remember my favorite color is blue, but my family tells me my favorite color was always red.
▪Starting in 2007 I began having three odd symptoms. Sometimes my ears do not hear correctly when I wake up in the morning. It's like my hearing is turning on and off. It clears up pretty quickly. The other thing that started happening was while sitting at my desk I would suddenly lose consciousness for a split second. It would last for less than a second. I also began having trouble riding in vehicles in 2007.
▪Over the years I've had intense sugar cravings to the point where I became a binge eater. Before this sudden explosion of symptoms I basically ate nonstop all day and I never would gain any weight. In fact, I've had difficult time trying to gain weight my entire life. I weighed 96lb my senior year of high school and finally managed to get it to hover between 135lb and 140lb.
▪I started drinking coffee at the age of seven and coffee became my primary beverage up until 2009. That's nearly 20 years of daily caffeine. At least 5 pots of coffee per day with each cup containing 4-6 spoons of sugar. After I quit drinking coffee is when I became a binge eater. That's why I rapidly lost weight when I got to where I couldn't eat in 2013. (I quit drinking coffee due to heart palpitations).
There are lots of little bits of information and I don't know what is relevant and what isn't. If you could help me determine the most pressing issue I'd appreciate it. I need a starting place. My mom thinks I should start by looking at my circulatory system, but that doesn't make much sense to me. We are far too poor to waste any money on tests that aren't going to reveal anything that's for sure.
Thanks,
Ryan
My main goal with this thread is to just bounce ides around, see if there are any common themes, receive feedback on my thoughts, get an outsiders perspective, and ultimately come up with a plan. I'm currently looking for a holistic doctor near me that might be able to help.
Additional information...
When I first started seeing my PCP he said he's thinking this looks like Lupus. He and nine other medical professionals have over the past two years have suggested I see a rheumatologist. So perhaps I have something like Lupus or Multiple Sclerosis. My Allergist did suggest I see an Immunologist to obtain a better understanding of what my immune system is doing.
The big thing I'm leaning towards is stress as a trigger. In August of 2013 I was emotionally stressed and physically stressed with all the farm work. There is evidence to support Adrenal Fatigue.
What makes my symptoms worse?
▪ Movement - (standing up, lifting, bending).
▪ Sitting up right
▪ Riding in vehicles (going fast) **
▪ Bowel movements
▪ Watching action movies **
▪ Playing intense video games **
▪ Listening to my favorite music **
▪ Intense conversation or debate **
▪ Sudden loud noises **
▪ Stressful situations **
▪ Sexual stimulation **
▪ Doctor visits (anxiety) **
▪ Foods
▪ Anger **
▪ Night
The majority of those triggers deal a lot with the SNS, adrenaline, and other hormones. Any type of stimulation seems to make this worse, which as I've read does occur with Adrenal Fatigue, Adrenal Burnout, Adrenal Insufficiency Syndrome.
To touch on what Niko said some of the problems I'm having with sexual stimulation may be normal, but my body just can't take it at the moment. My body's reaction to that stimulation is very negative. One thing I did forget to mention is that sexual stimulation causes me to break out in a rash on my penis and across my chest, which to me sounds like a very bad hormonal imbalance and that is why I decided to go to an Endocrinologist, but my Endocrinologist would rather argue with me about whether I should even be seeing her rather than listening to me and assessing my symptoms.
That takes me to the insurance and clinics that RockRose suggested. It would be nice if we lived in a perfect world where simply having insurance and going to a facility with highly trained doctors guaranteed you a diagnosis, but it is my experience that unfortunately that's just not the case. My condition has gradually worsened year after year and doctors have gone further and further in the wrong direction.
Money is also a big issue here. I'm unable to work, I don't have insurance, I don't qualify for government aid. I've got a GoFundMe page where I'm taking donations and a lot of people are stepping up to give me some advice about programs and such, but I'm living with family and on these aid applications it asks "what is the total income of the household?" Even though we're in poverty my step dad brings in enough money to disqualify me for help.
If this is stress induced Adrenal Fatigue, what type of treatment options are there? Also, during the two years of researching my symptoms I've found evidence that mold/fungal infections can damage the adrenal glands and cause problems. I've looked into adrenal crisis and it sounds a lot like some of what happens when this suddenly intensifies.
Additional details
▪When I was born the umbilical cord was wrapped around my throat. My mom said my o2 sat dropped down in the 20s and I was the deepest blue she had ever seen a human being. I do have learning disabilities and I stuttered as a child.
▪I was diagnosed with scoliosis as a child. You can really tell now that I've lost so much weight.
▪I had a massive head injury in 2002 and never got medical attention. I can still feel where it dented the back of my skull in. I've had trouble seeing ever since. Doctors have never looked into this, but I do know that head injuries can lead to conditions like ALS. Just after I hit my head I lost the ability to see in the seconds after. I never lost consciousness, but my vision faded to black. It was like that for about 30 seconds and my vision returned then slowly faded to solid white. When my vision came back it wasn't normal after that. I had to get glasses the same month I hit my head, but the glasses don't help. Not long after that I began having significant memory issues, involuntary muscle movements, insomnia and a list of symptoms that eventually sent me to doctors in 2004 and they initially thought I had a stroke because I was having speech problems and I could only say 4-5 words and I would forget what I was talking about. My speech was very choppy.
Then in mid 2005 one morning while making breakfast I fell to the floor of my mom's kitchen (I have no memory of this). My mom being a nurse rushed in to tend to me. When I woke up she told me she has no doubt that I was having a seizure. She said my eyes were rolled back in my head and my entire body was shaking. After that seizure I got much of my memory back and regained more control over my body, but I would lose my balance still and drop things a lot. I often wonder if this is possibly causing problems. It did change my personality and some details about me changed as well. Apparently my favorite color was red before my head injury. I have no memory of that. As far as I can remember my favorite color is blue, but my family tells me my favorite color was always red.
▪Starting in 2007 I began having three odd symptoms. Sometimes my ears do not hear correctly when I wake up in the morning. It's like my hearing is turning on and off. It clears up pretty quickly. The other thing that started happening was while sitting at my desk I would suddenly lose consciousness for a split second. It would last for less than a second. I also began having trouble riding in vehicles in 2007.
▪Over the years I've had intense sugar cravings to the point where I became a binge eater. Before this sudden explosion of symptoms I basically ate nonstop all day and I never would gain any weight. In fact, I've had difficult time trying to gain weight my entire life. I weighed 96lb my senior year of high school and finally managed to get it to hover between 135lb and 140lb.
▪I started drinking coffee at the age of seven and coffee became my primary beverage up until 2009. That's nearly 20 years of daily caffeine. At least 5 pots of coffee per day with each cup containing 4-6 spoons of sugar. After I quit drinking coffee is when I became a binge eater. That's why I rapidly lost weight when I got to where I couldn't eat in 2013. (I quit drinking coffee due to heart palpitations).
There are lots of little bits of information and I don't know what is relevant and what isn't. If you could help me determine the most pressing issue I'd appreciate it. I need a starting place. My mom thinks I should start by looking at my circulatory system, but that doesn't make much sense to me. We are far too poor to waste any money on tests that aren't going to reveal anything that's for sure.
Thanks,
Ryan
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I've read through this thread and there doesn't seem to be any medical facility taking charge. Folks here on this thread are really helpful and suggesting things, but you need the Mayo clinic or some other clinic with an equal reputation for taking charge and driving this to ground.
It seems to me that all the medical professionals so far have run a few tests and shrugged their shoulders and passed you on.
Before you die, sign up for free health care and go to the Mayo where a comprehensive staff will care.
Best wishes, and prayers.