let's play guess my ailment!
Aug 15, 2013, 1:24 pm
#61
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I would want to look at your overall diet too and see if there may be some food intolerances, or simply something you eat a lot that might be resulting in low energy.
Aug 17, 2013, 10:13 am
#62
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I won't even hazard a guess. But I believe it's human nature for someone frustrated seeking a cause of illness to "slot" it into a predetermined notional box or possibly into something that "works well enough". It pays for a patient to be, well, patient and doggedly persistent.
As an example, I was pretty sure I had picked up a case of Entamoeba histolytica (amoebiasis) in my old home town - they use the usual Metronidazole / Flagyl to treat, but people there have a tendency to discontinue medication (due to some of its uncomfortable side effects) when they begin feeling better. That means E. histolytica in some parts of the world is quite Flagyl-resistant.
My US docs kept telling me my intestinal discomfort, shall we say, was because of stress, etc. etc. and it was even more frustrating because amoebiasis may not manifest itself other than periodically, respond to certain triggers (hot weather and / or stress for me) and it may manifest itself in different ways; most think "ah, diarrhoea!" but it can go the other way as well. Tests can be inconclusive - my doc would have me produce samples, send them to a lab in Oregon and wait 2 - 3 weeks for the results to come back, generally negative.
Well, you may not always have amoebas producing cysts, etc. and, though the microtechnology courses in Oregon may be good, they generally do not stress looking for amoebic cysts.
I was visiting Nairobi, and had a flash inspiration - you don't even need a doctor to get a lab sample processed, so I went to a recommended lab, gave them a sample, waited a bit and got positive results. These techs are used to seeing variously manifested E. histolytica every day, they could find a needle in a haystack if that needle were a sign of E. histolytica.
I've had similar experiences - picked up chikungunya fever (CHIKV) in Vietnam in 1965, the American docs were completely clueless (until later, when a doc who had served in SEA figured out what the symptoms were from).
A few years ago, I picked up dengue fever (in Quintana Roo, Mexico) and again the docs were clueless, until I told them I had been in a dengue-ridden area and had an experience - totally unprepared, wearing a dark tee shirt and no repellent - when we walked into the forest and clouds of day-biting mosquitoes - at Kohunlich archaeological zone.
(Of course, there's no cure for these related arboviruses, you have to sweat them out and they can persist; trust me you do not want that! They didn't not call dengue "breakbone fever" in the old days for naught. If you are going to tropical zones with these, protect yourself against mosquito bites; it's a lot easier and less trouble than dealing with the aftermath.)
I think you've had some good advice and examples here. So, persist, read, inquire, be pesky
and keep nattering. You are your best advocate, and who would care more about you and your health than you?
As an example, I was pretty sure I had picked up a case of Entamoeba histolytica (amoebiasis) in my old home town - they use the usual Metronidazole / Flagyl to treat, but people there have a tendency to discontinue medication (due to some of its uncomfortable side effects) when they begin feeling better. That means E. histolytica in some parts of the world is quite Flagyl-resistant.
My US docs kept telling me my intestinal discomfort, shall we say, was because of stress, etc. etc. and it was even more frustrating because amoebiasis may not manifest itself other than periodically, respond to certain triggers (hot weather and / or stress for me) and it may manifest itself in different ways; most think "ah, diarrhoea!" but it can go the other way as well. Tests can be inconclusive - my doc would have me produce samples, send them to a lab in Oregon and wait 2 - 3 weeks for the results to come back, generally negative.
Well, you may not always have amoebas producing cysts, etc. and, though the microtechnology courses in Oregon may be good, they generally do not stress looking for amoebic cysts.
I was visiting Nairobi, and had a flash inspiration - you don't even need a doctor to get a lab sample processed, so I went to a recommended lab, gave them a sample, waited a bit and got positive results. These techs are used to seeing variously manifested E. histolytica every day, they could find a needle in a haystack if that needle were a sign of E. histolytica.
I've had similar experiences - picked up chikungunya fever (CHIKV) in Vietnam in 1965, the American docs were completely clueless (until later, when a doc who had served in SEA figured out what the symptoms were from).
A few years ago, I picked up dengue fever (in Quintana Roo, Mexico) and again the docs were clueless, until I told them I had been in a dengue-ridden area and had an experience - totally unprepared, wearing a dark tee shirt and no repellent - when we walked into the forest and clouds of day-biting mosquitoes - at Kohunlich archaeological zone.
(Of course, there's no cure for these related arboviruses, you have to sweat them out and they can persist; trust me you do not want that! They didn't not call dengue "breakbone fever" in the old days for naught. If you are going to tropical zones with these, protect yourself against mosquito bites; it's a lot easier and less trouble than dealing with the aftermath.)
I think you've had some good advice and examples here. So, persist, read, inquire, be pesky
and keep nattering. You are your best advocate, and who would care more about you and your health than you?
Jan 31, 2014, 4:44 pm
#63
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My PCP left the practice she was in as of the end of 2013, so I switched doctors. I started seeing a doctor in an "ideal micro-practice," which is not quite concierge medicine, but also not revolving door medicine either. There's only 1 doctor in the practice, 2 medical assistants, and appointments are 30 minutes, at a minimum. If you need it, you get the full 30 minutes or full hour. There's no rushing you in and out of the exam rooms, etc. If you call because you are sick, they see you the same day.
I had my new patient physical yesterday, although I'd been seen twice previously, once for strep throat, once for a sinus infection. I mentioned to the doctor that I'm still always exhausted and am generally always in pain. While he now has all of my labs from last year, he has ordered basically all of the same labs again, so that he has current labs. If he finds nothing in those, he'll order other labs to try to rule out some other more obscure ailments.
Today has not been a good day. I've been in serious pain all day, and had to be up and down the stairs at work far more than in a normal day, so it was not an easy day. I think the only thing that has kept me from screaming has been that I finally feel like I have a doctor who is willing to consider everything and not just try to find an easy answer.
I had my new patient physical yesterday, although I'd been seen twice previously, once for strep throat, once for a sinus infection. I mentioned to the doctor that I'm still always exhausted and am generally always in pain. While he now has all of my labs from last year, he has ordered basically all of the same labs again, so that he has current labs. If he finds nothing in those, he'll order other labs to try to rule out some other more obscure ailments.
Today has not been a good day. I've been in serious pain all day, and had to be up and down the stairs at work far more than in a normal day, so it was not an easy day. I think the only thing that has kept me from screaming has been that I finally feel like I have a doctor who is willing to consider everything and not just try to find an easy answer.
Mar 4, 2014, 5:42 pm
#64
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I had a follow-up tonight, and other than a low vitamin D level, everything is fine. At least this PCP isn't blaming my vitamin D level. He ordered more bloodwork and wants me to see a different rheumatologist, because he doubts that the first one was right.
Mar 4, 2014, 5:48 pm
#65
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With the weight loss (and I assume improved diet) are you feeling at all better?
Mar 4, 2014, 8:10 pm
#66
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Mar 8, 2014, 4:00 pm
#67
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Appointment with another rheumatologist on March 27th. That's shaping up to be a crazy day for me--I drop Geno off for surgery at 8 AM, then head to my appointment for 9, then have to be at a vendor conference from 10-2. At 4, I can pick up Geno from the vet. At least I feel like I'm getting somewhere!
Mar 27, 2014, 1:59 pm
#68
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Rheumatologist thinks it's fibromyalgia. I start meds in the morning to try to boost my energy, and we'll see if those help.
Jun 9, 2016, 3:02 pm
#69
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Figured I'd post an update. I switched rheumatologists, because mine seemed to want to only push one medication, and I'd been feeling as if something else was wrong.
Tons of blood work, I'm now on Celebrex for my joint pain, and I have more tests scheduled for later this month.
Tons of blood work, I'm now on Celebrex for my joint pain, and I have more tests scheduled for later this month.
Nov 17, 2017, 10:03 am
#70
Join Date: Nov 2017
Posts: 1
Hypothyroidism Type 2, intestinal parasites, food allergies, and emotional wounds
Kipper,
I know this is an old thread but I think I may be able to help. In 2001 I came down with a mysterious illness two weeks after a SCUBA trip to the Caribbean. To make a long story short, I figured out I had fibromyalgia and chronic fatigue syndrome (CFS) which is sometimes called myalgic-encephalomyelitis (ME) especially in the UK. I had all kinds of tests done and I'd seen all kinds doctors. All results negative/normal. Extremely frustrating. I'll skip over all the stuff I tried that didn't work.
*** DISCLAIMER: I am not a medical professional - I am not offering medical advice - These are my experiences for informational purposes only ***
Things that did work for me:
1) I am hypothyroid type 2. Most doctors don't know there are two kinds. The first type is where your thyroid is in failure and produces little or no hormone, which is easily detected with a blood test (which I had done many times with the T3 and T4 and other options). With type 2 you test in the "normal" range but you need more. Dr. Mark Starr has a great book called "Hypothyroidism Type 2." I highly recommend you buy a copy and read it (used on Amazon for like $10). HT2 is hereditary so your parents, siblings, and children have a good chance of having it too. According to Dr. Starr, there's an easy test to determine if you are HT2 - take your basal/resting temperature. First thing in the morning, before you start moving around, put a thermometer in your underarm. Your underarm is usually one degree below 98.6. So it should be 97.6. Men and post-menopausal women can do this any day of the month. Pre-menopausal women can do it only on the 2, 3, and 4 days of bleeding. If you are less than 97.6 and have one or more other symptoms (fatigue, post-exertion malaise, brain fog, etc - see book for more) then you are most likely HT2. That's what happened with me. I've been cold all my life. Some people go the other way though and are dying of heat all the time - that was my ex-wife. She loved the AC on high. According to Dr. Starr, if you are HT2, take iodine for 4 weeks (3 drops a day - Lugols (no affiliation) off of Amazon for $12 for 2oz bottle that lasts a long time). Do that otherwise there's risk of damaging your adrenals. Then start taking thyroid. You can get a prescription from a doctor or go it on your own. There are two types of prescription thyroid: real and synthetic. According to Dr. Starr, the synthetic makes your blood test results good but doesn't actually help with your symptoms so he recommends not using the synthetic. I order "Ultra Glandulars Raw Thyroid" for ~$25 (no affiliation) from VitaCost, iHerb, or Amazon. I find a dose lasts about 8-9 hours so I take 1/2 a pill (100mg) every 8 hours instead of one big dose once a day. I can tell when I forgot a dose because I get cold. One bottle of 90 pills lasts me 60 days. It changed my life. I feel alive again instead of exhausted all the time.
2) I had intestinal parasites which I got during my SCUBA trip. I had at least four different kinds: 2 micro and 2 macro. Best medication I've found is colloidal copper (Ultra Colloidal Copper 100pm - $25 off of Amazon (no affiliation)). Copper kills invertebrates - ask anyone with a saltwater aquarium. I had a herxheimer reaction when I took it so I knew it was working. A herxheimer reaction is where your symptoms temporarily get worse. I had to go slow or just completely stop for a few days when the die-off symptoms were so bad. I took about 1-2 capfuls a day for months. Why so long? The eggs are almost indestructible. The copper will kill the adults and the juveniles but then I had to wait for the eggs to hatch. One adult can lay hundreds or thousands of eggs a day. It's marathon/war not a sprint/battle.
3) I have dairy and gluten allergies. Most people with HT2 have something similar. I love chocolate, cheese, and bread. I would have thought my allergy symptoms (rhinitis, gas - both ends, bloating, severe stomach and intestinal upset) would stop after a few days. It took 2-3 weeks for my insides to feel reasonably normal. Oh, no potatoes either. Something about them. I think this is what caused my fibromyalgia symptoms - joint and muscle pain. No dairy + no gluten + no potatoes = Much less pain.
4) I wasn't processing my emotions. I was stuffing and ignoring them. I recently discovered that my emotions don't have a half life. They don't fade and it takes energy to hold them inside. That was another BIG part of my fatigue issues (bad 7 year marriage that ended in divorce and having to leave a job after 16 years). One of the most beautiful and amazing things I have ever seen in my entire life that is helping to find and heal all these terrible emotional wounds I have stored up is "The Comfort Cycle." There's a book and DVD set by Milan and Kay Yerkovich titled "How We Love." (no affiliation) In the book and DVD set they explain and show the Comfort Cycle. Absolutely life changing amazing. I've been healed from so many emotional wounds with my new girlfriend and I've helped her heal so many of her emotional wounds. DVD set is $180 but it is soooooo worth it. I'm a recovering avoider/pleaser. I believe my ex-wife is/was a vacillator/controller. My girlfriend (hopefully soon to be fiance) is a recovering vacillator/controller. Also, the book "Keep Your Love On" by Danny Silk is awesome. A great question the book asks and answers is, "what is the goal of your marriage?" A bad marriage can destroy your health.
I hope that helps you or anyone else that finds this post.
God bless.
-KirkJT
I know this is an old thread but I think I may be able to help. In 2001 I came down with a mysterious illness two weeks after a SCUBA trip to the Caribbean. To make a long story short, I figured out I had fibromyalgia and chronic fatigue syndrome (CFS) which is sometimes called myalgic-encephalomyelitis (ME) especially in the UK. I had all kinds of tests done and I'd seen all kinds doctors. All results negative/normal. Extremely frustrating. I'll skip over all the stuff I tried that didn't work.
*** DISCLAIMER: I am not a medical professional - I am not offering medical advice - These are my experiences for informational purposes only ***
Things that did work for me:
1) I am hypothyroid type 2. Most doctors don't know there are two kinds. The first type is where your thyroid is in failure and produces little or no hormone, which is easily detected with a blood test (which I had done many times with the T3 and T4 and other options). With type 2 you test in the "normal" range but you need more. Dr. Mark Starr has a great book called "Hypothyroidism Type 2." I highly recommend you buy a copy and read it (used on Amazon for like $10). HT2 is hereditary so your parents, siblings, and children have a good chance of having it too. According to Dr. Starr, there's an easy test to determine if you are HT2 - take your basal/resting temperature. First thing in the morning, before you start moving around, put a thermometer in your underarm. Your underarm is usually one degree below 98.6. So it should be 97.6. Men and post-menopausal women can do this any day of the month. Pre-menopausal women can do it only on the 2, 3, and 4 days of bleeding. If you are less than 97.6 and have one or more other symptoms (fatigue, post-exertion malaise, brain fog, etc - see book for more) then you are most likely HT2. That's what happened with me. I've been cold all my life. Some people go the other way though and are dying of heat all the time - that was my ex-wife. She loved the AC on high. According to Dr. Starr, if you are HT2, take iodine for 4 weeks (3 drops a day - Lugols (no affiliation) off of Amazon for $12 for 2oz bottle that lasts a long time). Do that otherwise there's risk of damaging your adrenals. Then start taking thyroid. You can get a prescription from a doctor or go it on your own. There are two types of prescription thyroid: real and synthetic. According to Dr. Starr, the synthetic makes your blood test results good but doesn't actually help with your symptoms so he recommends not using the synthetic. I order "Ultra Glandulars Raw Thyroid" for ~$25 (no affiliation) from VitaCost, iHerb, or Amazon. I find a dose lasts about 8-9 hours so I take 1/2 a pill (100mg) every 8 hours instead of one big dose once a day. I can tell when I forgot a dose because I get cold. One bottle of 90 pills lasts me 60 days. It changed my life. I feel alive again instead of exhausted all the time.
2) I had intestinal parasites which I got during my SCUBA trip. I had at least four different kinds: 2 micro and 2 macro. Best medication I've found is colloidal copper (Ultra Colloidal Copper 100pm - $25 off of Amazon (no affiliation)). Copper kills invertebrates - ask anyone with a saltwater aquarium. I had a herxheimer reaction when I took it so I knew it was working. A herxheimer reaction is where your symptoms temporarily get worse. I had to go slow or just completely stop for a few days when the die-off symptoms were so bad. I took about 1-2 capfuls a day for months. Why so long? The eggs are almost indestructible. The copper will kill the adults and the juveniles but then I had to wait for the eggs to hatch. One adult can lay hundreds or thousands of eggs a day. It's marathon/war not a sprint/battle.
3) I have dairy and gluten allergies. Most people with HT2 have something similar. I love chocolate, cheese, and bread. I would have thought my allergy symptoms (rhinitis, gas - both ends, bloating, severe stomach and intestinal upset) would stop after a few days. It took 2-3 weeks for my insides to feel reasonably normal. Oh, no potatoes either. Something about them. I think this is what caused my fibromyalgia symptoms - joint and muscle pain. No dairy + no gluten + no potatoes = Much less pain.
4) I wasn't processing my emotions. I was stuffing and ignoring them. I recently discovered that my emotions don't have a half life. They don't fade and it takes energy to hold them inside. That was another BIG part of my fatigue issues (bad 7 year marriage that ended in divorce and having to leave a job after 16 years). One of the most beautiful and amazing things I have ever seen in my entire life that is helping to find and heal all these terrible emotional wounds I have stored up is "The Comfort Cycle." There's a book and DVD set by Milan and Kay Yerkovich titled "How We Love." (no affiliation) In the book and DVD set they explain and show the Comfort Cycle. Absolutely life changing amazing. I've been healed from so many emotional wounds with my new girlfriend and I've helped her heal so many of her emotional wounds. DVD set is $180 but it is soooooo worth it. I'm a recovering avoider/pleaser. I believe my ex-wife is/was a vacillator/controller. My girlfriend (hopefully soon to be fiance) is a recovering vacillator/controller. Also, the book "Keep Your Love On" by Danny Silk is awesome. A great question the book asks and answers is, "what is the goal of your marriage?" A bad marriage can destroy your health.
I hope that helps you or anyone else that finds this post.
God bless.
-KirkJT