Here is the link to the actual science paper on CFS/ME/SEID causing the immune system to go into hyperdrive during the first three years of illness. Hopefully this will be the game changer for my illness. We now have a potential biomarker if the illness is caught within the first three years. Now to wait not so patiently for treatments.
http://advances.sciencemag.org/content/1/1/e1400121
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Sunday, March 1, 2015
Tuesday, March 5, 2013
SIBO and CFS
Coincidentally (a little too coincident if you ask me) there has been quite a bit published in both the journals and in the patient forums regarding gut health and CFS lately.
A group in Australia has done poop transplants on CFS patients and had a 70% success rate (undefined in the free abstract) and a 53% extended remission rate (again undefined in the free abstract available).
Dr. Hornig has been looking into the gut/CFS connection as well. She has already discovered problems in the guts of autistic kids which would explain why the GAPS diet works for some of them.
A group in Australia has done poop transplants on CFS patients and had a 70% success rate (undefined in the free abstract) and a 53% extended remission rate (again undefined in the free abstract available).
The GI microbiome and its role in Chronic Fatigue Syndrome: A summary of bacteriotherapy
Dr. Hornig has been looking into the gut/CFS connection as well. She has already discovered problems in the guts of autistic kids which would explain why the GAPS diet works for some of them.
Infection, Autoimmunity and PANDA’s: Dr. Hornig on Chronic Fatigue Syndrome at Dr. Klimas’ NSU Conference
There is also a study on guts health in CFS patients about to be published by Sanjay Shukla.
Here is Dr. Teitelbaum's take on CFS and SIBO.
Where am I going with all of this? Well I have continued my decline. I'm back to being on the couch unable to read, drive or even ride in the car short distances without having severe symptoms. The B12 shots and the Equalibrant aren't the cause of my miraculous recovery since I'm still taking them and I'm back to my shitty old self.
Today I got my test results back from Dr. Komaroff and a chronic bacterial infection is indicated by my blood work. He is suggesting I go to an infectious disease specialist. My treating CFS doc Dr. W. also thinks my miraculous recovery was due to bacterial infection of my guts. Then suddenly all this stuff shows up on the interwebs about SIBO. Coincidence!?! Weird if you ask me. So I've emailed my primary doc asking if he will send me to my infectious disease doc over at Tufts or just start treating me for SIBO. There are two treatments for it: 1) Xafaxin and/or 2) Paleo and/or GAPS diet. Another coincidence!?! I think I'll do both. I'll go on the Xafaxin since my insurance covers it and start GAPS. I had planned on doing GAPS about a year ago but was too sick to actually go through with it. If I can get a head start with the antibiotics then I'll be able to cook again and start with GAPS and end up on Paleo.
I'm groaning at this. I've been eating wheat products again because I've been craving them. My son and I sneak out the house while hubs is sleeping and go get roast beef sandwiches at 1am since we are both night owls. It has become a social ritual with us. We also go out for breakfast at two in the afternoon when we get up and go on random coffee runs. We have bonded over coffee and donuts. This all leads to toast, muffins, donuts and sandwiches. None of which I'll be able to eat on GAPS or Paleo. I won't be able to cheat for a long time. At least months if not a year or two. Since I am so limited in what I can do physically, food has become our social time. The time to get Mom out of the house for an hour or two. I will have to look hard for new rituals to replace these. Things we can do together where I won't be as tempted to eat cheat foods. Perhaps even stuff we can do together that doesn't involve food. If my head clears up we can always go for car rides together. He loves driving around.
I. Am. Dreading. The. Diet!!!! This is going to SUCK!!!
Wednesday, July 11, 2012
My Big Toe
Finally made it to the dermatologist this morning. 8:30am UGH!! We were only a little late. I really liked the doc I saw. He smiled a lot and was very happy to discuss my toe with me. I even explained CFS being causing all sorts of problems with the immune system and he agreed that the CFS might be playing into the sudden appearance of the rash.
So the diagnosis:
bullous tinea pedis
Which is an odd type of athlete's foot fungus. It creates small blisters and inflammation which makes it look like an allergic reaction. However he took skin scrapings and looked at them under a microscope and confirmed the presence of the fungus. He was 100% sure of his diagnosis.
Easy treatment, just put on some cream. Ironically it is the same stuff that I've been using for two years to get rid of the rash along my bra line. He didn't recommend pills yet as they are very toxic to the liver. I agreed I didn't want to go that route until I had tried the cream first. He told me that it would be 2-4 weeks before it would clear up since it is on the foot where there is reduced blood flow.
On the one hand I like the idea of taking a pill and getting rid of all of my various rashes at once but the fact that they are a liver toxin doesn't bode well. I have enough trouble detoxing as it is without adding something that is a known toxin to my system. I'll just stick to the cream for a month and see what happens.
I have added apple cider vinegar foot baths to my routine. Apparently the stuff is a fungicide. Woohoo!! It does stop the itching for a while. Maybe I'm going to have to paint the underside of my boobs with it. I'll smell like salad dressing ;-)
So the diagnosis:
bullous tinea pedis
Which is an odd type of athlete's foot fungus. It creates small blisters and inflammation which makes it look like an allergic reaction. However he took skin scrapings and looked at them under a microscope and confirmed the presence of the fungus. He was 100% sure of his diagnosis.
Easy treatment, just put on some cream. Ironically it is the same stuff that I've been using for two years to get rid of the rash along my bra line. He didn't recommend pills yet as they are very toxic to the liver. I agreed I didn't want to go that route until I had tried the cream first. He told me that it would be 2-4 weeks before it would clear up since it is on the foot where there is reduced blood flow.
On the one hand I like the idea of taking a pill and getting rid of all of my various rashes at once but the fact that they are a liver toxin doesn't bode well. I have enough trouble detoxing as it is without adding something that is a known toxin to my system. I'll just stick to the cream for a month and see what happens.
I have added apple cider vinegar foot baths to my routine. Apparently the stuff is a fungicide. Woohoo!! It does stop the itching for a while. Maybe I'm going to have to paint the underside of my boobs with it. I'll smell like salad dressing ;-)
Saturday, April 16, 2011
Chronic Pain Amplification Syndrome
This is my official diagnosis from the rheumatologist. It includes fibromyalgia as a subset. I'm still looking into it but here is a short summary.
Saturday, April 9, 2011
How Many Licks Does It Take to Get to the Center?
35 Office visits
countless emails
4 Phone consultations
9 Doctors
3 Med students
1 Psychologist
1 Psychiatrist
11 Months
>50 Vials of blood (I lost count after 30)
2 Cortisol tests
1 Urine test
1 MRI of brain
1 CT scan of abdomen
2 Ultrasounds: one kidney and one thyroid
~12 X-rays: chest, neck, shoulders, ankle, knee
Diagnosis: CFS and Fibromyalgia with secondary depression
Other things found: kidney cyst, remnants of whiplash in neck, nodules on thyroid, calcium deposit in right shoulder
Unrelated stuff: osteoarthritis of the thoracic spine, sprained ankle, rotator cuff tendinitis (from calcium deposit)
Now to start on the healing part of the journey....
countless emails
4 Phone consultations
9 Doctors
3 Med students
1 Psychologist
1 Psychiatrist
11 Months
>50 Vials of blood (I lost count after 30)
2 Cortisol tests
1 Urine test
1 MRI of brain
1 CT scan of abdomen
2 Ultrasounds: one kidney and one thyroid
~12 X-rays: chest, neck, shoulders, ankle, knee
Diagnosis: CFS and Fibromyalgia with secondary depression
Other things found: kidney cyst, remnants of whiplash in neck, nodules on thyroid, calcium deposit in right shoulder
Unrelated stuff: osteoarthritis of the thoracic spine, sprained ankle, rotator cuff tendinitis (from calcium deposit)
Now to start on the healing part of the journey....
Thursday, March 31, 2011
It's Official
It is official. I have Chronic Fatigue Syndrome. I saw my cool new doctor today. He is half regular medicine half holistic doctor. He went through the CDC criteria with me and we decided together that I had CFS. I've known this since last year I've just never had a doc that was willing to admit it, particularly in writing. He just looked at me and said that I have all of the symptoms used to diagnose it and also many of the CDC 'extras' (symptoms that are common with CFS but not used to diagnose it).
He is tweaking my supplement list. He said that my chiropractor did good putting me on the FM supplement protocol. Between my supplements and meds I have not gotten as sick as most of the CFS patients he normally sees.
He is also having me consult with an infusion specialist at the same center. This means I have to make the one hour trek back the office in a week and a half. I also have to pay out of pocket for any IV treatment I decide to go forward with since insurance doesn't pay for any of it. Since I've heard good things about this from other patients I'm willing to give it a go.
He is tweaking my supplement list. He said that my chiropractor did good putting me on the FM supplement protocol. Between my supplements and meds I have not gotten as sick as most of the CFS patients he normally sees.
He is also having me consult with an infusion specialist at the same center. This means I have to make the one hour trek back the office in a week and a half. I also have to pay out of pocket for any IV treatment I decide to go forward with since insurance doesn't pay for any of it. Since I've heard good things about this from other patients I'm willing to give it a go.
Tuesday, March 1, 2011
F##ked Again
Once again I have been fucked over by a doctor. This time it is the high ranking, top of the line, rheumetologist at Tufts. My lawyer called her today. Turns out she is back pedaling on my Fibromyalgia diagnosis.
When I was in the exam room with her, she tested all of my tender points and put me through the roof with several of them, most of them were sore but tolerable and a few had no reaction. She looked at me and said "you have fibromyalgia." My husband was there he witnessed this so I'm not making it up or having to rely on my faulty memory. She then proceeded to tell me that she didn't do CFS so couldn't comment on that. She also told me that she wouldn't be taking me on as a patient and that I would have to find another rhuemetologist to treat me. I asked her if she knew any CFS doctors in the area and she told me that she would check. When we talked on the phone she told me my lab test results: low D and no parvovirus and that she didn't know any CFS docs. When I got the letter there was this wishy washy statement:
Today suddenly she says that she can't tell if I have fibromyalgia from just one exam. She would need to see me over a course of time to come to that diagnosis but she won't take me on as a patient. She told my lawyer that she doesn't get involved in legal cases.
So the trip in to Boston, the wait for the appointment, the wait for the diagnosis all was a colossal waste of time. I now have to find another rheumetologist that will actually keep me on as a patient, properly diagnose me and be willing to write a letter saying that I have fibromyalgia.
When I was in the exam room with her, she tested all of my tender points and put me through the roof with several of them, most of them were sore but tolerable and a few had no reaction. She looked at me and said "you have fibromyalgia." My husband was there he witnessed this so I'm not making it up or having to rely on my faulty memory. She then proceeded to tell me that she didn't do CFS so couldn't comment on that. She also told me that she wouldn't be taking me on as a patient and that I would have to find another rhuemetologist to treat me. I asked her if she knew any CFS doctors in the area and she told me that she would check. When we talked on the phone she told me my lab test results: low D and no parvovirus and that she didn't know any CFS docs. When I got the letter there was this wishy washy statement:
"Based on the constellation of signs and symptoms, she has some features that are consistent with fibromyalgia. As far as chronic fatigue syndrome, some of her symptoms can be associated with this. There is some overlap between the two and the treatment is usually mutifactorial. It is a diagnosis of exclusion."The letter was your basic "cover my ass" variety. She had included stuff in it that didn't happen, such as claiming she went over all the side effects and hazards of taking Celebrex (never happened), messed up some of my symptoms and then no solid diagnosis of FM.
Today suddenly she says that she can't tell if I have fibromyalgia from just one exam. She would need to see me over a course of time to come to that diagnosis but she won't take me on as a patient. She told my lawyer that she doesn't get involved in legal cases.
So the trip in to Boston, the wait for the appointment, the wait for the diagnosis all was a colossal waste of time. I now have to find another rheumetologist that will actually keep me on as a patient, properly diagnose me and be willing to write a letter saying that I have fibromyalgia.
Saturday, February 26, 2011
Hitting Bottom
This was a cumulative effect. The colonoscopy crashed me harder and longer than I had anticipated. I figured a couple of days and I'd be back on my feet and back to my old schedule. Boy was I surprised when I loaded the dishwasher last Saturday and had to sleep for three hours afterwards. I managed to make ONE and only one dinner this past week. Again this was a combination of events. My son is now working as well as attending college in the afternoons. He is no longer around to run errands and then help me with dinner. Since I was crashed so badly from the surgery, it was impossible for me to cook and we didn't have any groceries anyway. And cooking that one very easy meal sent me back to bed for hours again. I didn't even have the energy to hold up the butcher's knife I was using to skin the chicken. I kept having to put it down since it was too heavy for me. I have never been crashed that badly before. Scary!
This lead to the next nasty event. Hubby threw a grand mal hissy fit and stopped talking to me. He was furious. He hit his peak on the day my migraine started. So there I was on the couch with my knitted wristies over my eyes because I couldn't stand light or motion, with the TV on low so that I could listen to the quiet tones of the documentaries on PBS for distraction and unable to move so that I wouldn't make the pain worse than it already was. Dinnertime came and he was crashing around the kitchen. Every door slam made me wince in pain. He made himself dinner and once he was done finally came in the room and said "Want anything?" in that 'I dare you to answer' tone of voice. I asked him what was for dinner and he told me he already ate and since I didn't say anything he assumed that I didn't want anything. WTF?? When have I ever skipped dinner? I live for food. We've been married for 20 years so this is not secret information. And here I am parked on the couch unable to move or talk above a whisper and you have been avoiding me since you got home from work. So how the hell was I supposed to ask about dinner? More crashing about the kitchen produced a bowl of ravioli and another question "Am I taking you to the Hospital?" again in that 'I dare you' tone with an undercurrent of 'gee can I get rid of you?' He left me alone the rest of the night and eventually snuck off to bed leaving me in my misery. I was starving and thirsty and reluctant to move. My son made me a bowl of oatmeal and got me a drink which helped tremendously. Boy does he make terrible oatmeal but I was happy for the food and the lack of abuse.
For the next several days I got the silent treatment. No concern. No hugs. No 'how are you feeling today?' Nothing. Then Friday comes and I have my neuropsych follow up. Two weeks ago I took a series of tests for memory and cognitive functioning and Friday was results day. She did a thorough job with the report. I had gone there to see if I had deficits that would qualify me for disability or at least a test that showed that something was wrong. The testing did show problems with slowed motor skills and poor working memory and the tests showed that my brain was intact and physically functioning just something was interfering with the memory and motor skills. Now this is where things go horribly wrong. She says that this all can be fixed by proper sleep, vitamins, exercise and cognitive behavioural therapy. She says that I am fine to go back to work barring any physical problems. This just sent me over the edge. I fell down the well very suddenly and very unexpectedly. On the drive home I hit bottom. The thought that it would have been so much better and easier if I had just died a year ago rather than get horribly ill. We wouldn't be burning through our savings account. CJ wouldn't be mad at me. The kid would have his college fund. I wouldn't be wasting their time driving me to specialists who all tell me I'm okay and I just need cognitive therapy to stop me from benefiting from being ill. It would be so much easier if I just disappeared. The house would have been paid off with my life insurance policy. CJ could go live where ever he wanted and probably even buy a new business with the leftover money. It would have just been easier.
A night's sleep cures many ills, particularly mental ones. I'm doing much better today. I'm in better spirits. I started my Celebrex again to stop the headaches and joint pain. I wasn't supposed to start it for another few days but I couldn't stand the pain any more. I'm back on my diet so I get to eat good carbs and fruit and salad again. CJ and I started talking again last night. I told him that it was okay to be angry. I get that. This whole thing sucks. However, it is NOT okay to take it out on me. He still isn't at the point of asking me how I'm doing but at least he is talking to me again and behaving more like a human being. He actually kissed me this morning. First time in days!
The sun is out and it is another day. I see a holistic doctor next week. He is part of an integrative medicine practice. I'm hoping that this will work better for me since I would love some help with my diet and supplements as well as better pain management. I'm even willing to try CBT. I will probably derive some benefit from it. However, I'm under no illusions that this will make me better or fix my brain functioning. That chick has no idea what CFS is or how it affects the brain. While I agree with her test results I don't agree with her interpretation or her recommendations. I sent all the information to my lawyer and I'm wondering if she can get the neuropsych lady to change her report. In the meantime I'm looking for papers that refute the CBT & GET model for curing CFS.
I might have hit bottom yesterday but I'm bouncing back up again pretty fast. Things are looking a lot better today. I still have a lot of fight left in me. I guess I'm not going away that easily after all.
This lead to the next nasty event. Hubby threw a grand mal hissy fit and stopped talking to me. He was furious. He hit his peak on the day my migraine started. So there I was on the couch with my knitted wristies over my eyes because I couldn't stand light or motion, with the TV on low so that I could listen to the quiet tones of the documentaries on PBS for distraction and unable to move so that I wouldn't make the pain worse than it already was. Dinnertime came and he was crashing around the kitchen. Every door slam made me wince in pain. He made himself dinner and once he was done finally came in the room and said "Want anything?" in that 'I dare you to answer' tone of voice. I asked him what was for dinner and he told me he already ate and since I didn't say anything he assumed that I didn't want anything. WTF?? When have I ever skipped dinner? I live for food. We've been married for 20 years so this is not secret information. And here I am parked on the couch unable to move or talk above a whisper and you have been avoiding me since you got home from work. So how the hell was I supposed to ask about dinner? More crashing about the kitchen produced a bowl of ravioli and another question "Am I taking you to the Hospital?" again in that 'I dare you' tone with an undercurrent of 'gee can I get rid of you?' He left me alone the rest of the night and eventually snuck off to bed leaving me in my misery. I was starving and thirsty and reluctant to move. My son made me a bowl of oatmeal and got me a drink which helped tremendously. Boy does he make terrible oatmeal but I was happy for the food and the lack of abuse.
For the next several days I got the silent treatment. No concern. No hugs. No 'how are you feeling today?' Nothing. Then Friday comes and I have my neuropsych follow up. Two weeks ago I took a series of tests for memory and cognitive functioning and Friday was results day. She did a thorough job with the report. I had gone there to see if I had deficits that would qualify me for disability or at least a test that showed that something was wrong. The testing did show problems with slowed motor skills and poor working memory and the tests showed that my brain was intact and physically functioning just something was interfering with the memory and motor skills. Now this is where things go horribly wrong. She says that this all can be fixed by proper sleep, vitamins, exercise and cognitive behavioural therapy. She says that I am fine to go back to work barring any physical problems. This just sent me over the edge. I fell down the well very suddenly and very unexpectedly. On the drive home I hit bottom. The thought that it would have been so much better and easier if I had just died a year ago rather than get horribly ill. We wouldn't be burning through our savings account. CJ wouldn't be mad at me. The kid would have his college fund. I wouldn't be wasting their time driving me to specialists who all tell me I'm okay and I just need cognitive therapy to stop me from benefiting from being ill. It would be so much easier if I just disappeared. The house would have been paid off with my life insurance policy. CJ could go live where ever he wanted and probably even buy a new business with the leftover money. It would have just been easier.
A night's sleep cures many ills, particularly mental ones. I'm doing much better today. I'm in better spirits. I started my Celebrex again to stop the headaches and joint pain. I wasn't supposed to start it for another few days but I couldn't stand the pain any more. I'm back on my diet so I get to eat good carbs and fruit and salad again. CJ and I started talking again last night. I told him that it was okay to be angry. I get that. This whole thing sucks. However, it is NOT okay to take it out on me. He still isn't at the point of asking me how I'm doing but at least he is talking to me again and behaving more like a human being. He actually kissed me this morning. First time in days!
The sun is out and it is another day. I see a holistic doctor next week. He is part of an integrative medicine practice. I'm hoping that this will work better for me since I would love some help with my diet and supplements as well as better pain management. I'm even willing to try CBT. I will probably derive some benefit from it. However, I'm under no illusions that this will make me better or fix my brain functioning. That chick has no idea what CFS is or how it affects the brain. While I agree with her test results I don't agree with her interpretation or her recommendations. I sent all the information to my lawyer and I'm wondering if she can get the neuropsych lady to change her report. In the meantime I'm looking for papers that refute the CBT & GET model for curing CFS.
I might have hit bottom yesterday but I'm bouncing back up again pretty fast. Things are looking a lot better today. I still have a lot of fight left in me. I guess I'm not going away that easily after all.
Tuesday, January 18, 2011
7 More Vials
Going to a new doctor is always such an adventure. You don't know where you are going. You don't know where to park. You have no idea if the office staff is wonderful or a bunch of form Natzis. Well after seeing three different specialist I think I just hit the doctor jackpot with number four. Today I went to see an endocrinologist at Lahey Clinic North Shore. I am in LOVE with this doctor. The facility itself is quite nice and very clean. The elevators are too small but hey I'll deal. She is a petite Asian woman that is smart as a whip and loves her job. She went through a lot of the papers I brought with me. Listened to my history. Quizzed me on all sorts of issues such as my own health, health of my family and generally grilled me on weird symptoms that I didn't even think to put down on paper. She did a thorough exam and noticed all sorts of stuff my regular doc missed such as my being dizzy, weaving when my eyes are closed, slight swelling in my ankles, etc. She even tested me for OI without my even asking her!! Woohoo!! She then proceeded to tell me her thoughts and her action plan. Did I mention I love this woman? I don't have OI but since I have all the symptoms she is thinking that my cortisol levels are totally whacked. She thinks I've had FM for a while even prior to my getting sick. Then, when I caught my virus back in May, my thyroid went into overdrive to the point where my immune system started attacking my thyroid (hence the elevated thyroid numbers that showed up during the ID docs blood panel). As I was recovering from the thyroid problems (the numbers went back to normal within a month) the FM flared due to deconditioning. She is now the third doc who suspects that some of this is neural so I now have two of them wanting a brain MRI. So the plan is: ultrasound of the thyroid, lots of blood tests for thyroid and pituitary function, testing of cortisol levels, MRI of the brain and a neuro consult. She is going to expedite the tests and get together a team of doctors to take care of me including her, a Lahey rheumetologist (the Tufts one said she was only consulting and didn't want to follow up unless needed), and a really really good neurologist (her words not mine). I am SO excited!! I mean over the moon excited! She wants to help me! She has a plan! She is getting a team together! This is so awesome!
Another awesome thing that happened was a girl thing. Since my body got really wacky in September I now cry at the drop of a hat. Prior to that point I was a stable human being and even though I am a girl I rarely cried. I mean only once or twice a year tops and it had to be something really horrible. Now anything will start the tears going and it just gets worse the more tired I am. I've now cried in my primary docs office and my councilors office. I came damn close to crying in the lawyer's office and in the ID Doc's office. Now guys have a universal reaction to this: I get the dumbfound look and then the inevitable "Are you depressed?" question. Guys just do not get the hormonal thing. When I burst into tears in her office while I was explaining how stupid and shaky I get she came over, held my hand and told me "what has happened to you is awful and life altering. I'm going to help you feel better." She didn't ask me if I was depressed. She didn't think I was a freak. I have a patient crush on her.
Oh, in case you were wondering, the blog title refers to the additional 7 vials of blood they took for testing today. I think I am close to 50 vials now. And, the first cortisol test requires me sucking on a sponge for two minutes so they can test my saliva. I just did my first one. I'm sucking another sponge tomorrow night. It has to be done at midnight.
Another awesome thing that happened was a girl thing. Since my body got really wacky in September I now cry at the drop of a hat. Prior to that point I was a stable human being and even though I am a girl I rarely cried. I mean only once or twice a year tops and it had to be something really horrible. Now anything will start the tears going and it just gets worse the more tired I am. I've now cried in my primary docs office and my councilors office. I came damn close to crying in the lawyer's office and in the ID Doc's office. Now guys have a universal reaction to this: I get the dumbfound look and then the inevitable "Are you depressed?" question. Guys just do not get the hormonal thing. When I burst into tears in her office while I was explaining how stupid and shaky I get she came over, held my hand and told me "what has happened to you is awful and life altering. I'm going to help you feel better." She didn't ask me if I was depressed. She didn't think I was a freak. I have a patient crush on her.
Oh, in case you were wondering, the blog title refers to the additional 7 vials of blood they took for testing today. I think I am close to 50 vials now. And, the first cortisol test requires me sucking on a sponge for two minutes so they can test my saliva. I just did my first one. I'm sucking another sponge tomorrow night. It has to be done at midnight.
Tuesday, January 11, 2011
First Real Diagnosis
I have fibromyalgia. This came as a bit of a surprise since I'm not really in much pain. I have some mild joint pain and muscle cramping which gets worse when I'm tired but most of the pain is well managed with Celebrex. For me the worst symptom out of the list is the debilitating fatigue. It stops me from doing anything.
However, during my rhumetology exam this morning she pressed on all the fibro points and every single one hurt. Some more than others but I had pain at every single site. The weird thing is that she doesn't treat CFS at all and knew nothing about XMRV. She didn't even know what it stood for never mind that it the virus probably linked with CFS. So I asked her point blank for a referal to a CFS doctor. How could a fibro doc not know anything about CFS when they are more than likely related??
Anyway, the upshot of this whole morning is that I'm being tested for the parvovirus (the one and only virus missed by the ID doc), vitamin D deficiency (how was this one missed) and the usual inflamation markers (to see if they are still trending downwards). Another six vials of blood and my first urine sample. She wants me to have a brain MRI and a neuro consult for the memory loss, brain fog and confusion. We discussed the usual possible meds for fibro including Lyrica, Neurontin and Cymbalta. Not sure if I want to go the med route yet particularly since I already have headaches and nausea and some of the meds make these worse and I'm not in much pain.
I am begining to suspect I have a high pain threashold. Not surprising after I worked in a garage for years as a mechanic. You have to be 'tough like bull' to work there. After four years I often didn't even know when I was bleeding all over the place. When I had my kid I lasted an entire day in full labor with no drugs. It was at my husband's insistance that I finally gave in and had an epidural. But I digress...
I just have to wait for the official letter and phone call with the test results which should be next week. Then it is on to a CFS specialist, the endo doc and a neuro doc. I just hope I get through all this prior to the deadline on my LTD.
However, during my rhumetology exam this morning she pressed on all the fibro points and every single one hurt. Some more than others but I had pain at every single site. The weird thing is that she doesn't treat CFS at all and knew nothing about XMRV. She didn't even know what it stood for never mind that it the virus probably linked with CFS. So I asked her point blank for a referal to a CFS doctor. How could a fibro doc not know anything about CFS when they are more than likely related??
Anyway, the upshot of this whole morning is that I'm being tested for the parvovirus (the one and only virus missed by the ID doc), vitamin D deficiency (how was this one missed) and the usual inflamation markers (to see if they are still trending downwards). Another six vials of blood and my first urine sample. She wants me to have a brain MRI and a neuro consult for the memory loss, brain fog and confusion. We discussed the usual possible meds for fibro including Lyrica, Neurontin and Cymbalta. Not sure if I want to go the med route yet particularly since I already have headaches and nausea and some of the meds make these worse and I'm not in much pain.
I am begining to suspect I have a high pain threashold. Not surprising after I worked in a garage for years as a mechanic. You have to be 'tough like bull' to work there. After four years I often didn't even know when I was bleeding all over the place. When I had my kid I lasted an entire day in full labor with no drugs. It was at my husband's insistance that I finally gave in and had an epidural. But I digress...
I just have to wait for the official letter and phone call with the test results which should be next week. Then it is on to a CFS specialist, the endo doc and a neuro doc. I just hope I get through all this prior to the deadline on my LTD.
Monday, November 8, 2010
Funny You Should Mention That
Talking of thyroids look what just popped up at Zenfully Delicious - Hashimoto's Thyroiditis This is the type of thyroiditis you typically get post viral infection. It also explains that my high TSH number means that I'm hypothyroid not hyperthyroid which makes way more sense.
Some more info:
http://en.wikipedia.org/wiki/Hashimoto's_thyroiditis
http://www.medicinenet.com/hashimotos_thyroiditis/article.htm
Some more info:
http://en.wikipedia.org/wiki/Hashimoto's_thyroiditis
http://www.medicinenet.com/hashimotos_thyroiditis/article.htm
Thursday, October 14, 2010
Check, 1, 2, 3
Test results report
Three things showed up in my first round of blood work done at the infectious disease office: high sed rate, elevated CMV (a type of mono marker) and low B12 (240 pg/mL).
Now my sed rate has always been something of a mystery to my docs. It is ALWAYS elevated. This is nothing new and my old docs used to dismiss it out of hand as part of my osteoarthritis or the latest bruise I had acquired. The ID doc didn't give me a number on this so I don't know if it significantly different now than before. I told my regular doc about it so he is probably going through my old blood tests now to see if it trending up or down.
The CMV test while elevated doesn't differentiate between something or other that I can't remember. Anyway it is significant enough that I need another blood test to see the difference between CMV IgG and CMV IgM. What this means to me I've forgotten already. I'll be reading up on it tonight.
I've been reading about B12 deficiency on Wikipedia. Yes, I know, not the most reliable source but it is usually my starting point before I do more research on more reliable web sites: I often get good search terms from the Wikipedia articles so I get better hits off Google. I'll post more about B12 later after I've done some more research on it. Suffice it to say they put me on 1000 mcg/day. I took my first dose today so it is going to take a while before I start feeling the effects. According to the ID doc, it will take four months or longer to build my blood levels of B12 back up to 'normal' levels. I will have to have a B12 blood test again in four months to see how I'm doing.
The ID doc didn't want to comment on my CT scan until the final report was available.
The upshot of the whole thing is that the ID doc suspects that a majority of my symptoms are being caused by a B12 deficiency. However, they don't know why it is so low. They are thinking along the lines of malabsorption in the small intestines but this can have several causes including but not limited to Celiac or Whipple's disease (yes, I had to look that one up and yes it is rare). They decided that they really wanted a second round of blood tests first before doing a small intestine biopsy for the other diseases. So I donated another four vials of blood to the cause and I have to wait another three weeks for the test results but at least I get to try out the B12 supplements in the meantime. I am so hoping this is going to be my magic bullet. I will be over the moon happy if I suddenly start feeling better just because of a vitamin supplement. I know this isn't the cure but at least I will be able to resume showering standing up. And that will make me a very happy woman.
Whatever the results, I learned a huge thing during this visit. My ID doc and I aren't speaking the same language. What I have is weird and hard to describe. We had the worst time trying to talk about my not being able to walk. It isn't really muscle weakness but a weird combination of lack of energy and lack of spacial awareness. If I close my eyes or I'm in a dark room then I seem to be floating in water and I can no longer tell which way is up. I'm not dizzy per say but I'm definitely having trouble with up and down. He kept asking me if I had 'gait disturbance' and I have no idea what that means. I think I am going to have to get very specific when I describe my symptoms. I can no longer use general but somewhat inaccurate terms such as dizzy or fatigued. They just don't fit what is happening to me. This was a huge breakthrough in communications.
Three things showed up in my first round of blood work done at the infectious disease office: high sed rate, elevated CMV (a type of mono marker) and low B12 (240 pg/mL).
Now my sed rate has always been something of a mystery to my docs. It is ALWAYS elevated. This is nothing new and my old docs used to dismiss it out of hand as part of my osteoarthritis or the latest bruise I had acquired. The ID doc didn't give me a number on this so I don't know if it significantly different now than before. I told my regular doc about it so he is probably going through my old blood tests now to see if it trending up or down.
The CMV test while elevated doesn't differentiate between something or other that I can't remember. Anyway it is significant enough that I need another blood test to see the difference between CMV IgG and CMV IgM. What this means to me I've forgotten already. I'll be reading up on it tonight.
I've been reading about B12 deficiency on Wikipedia. Yes, I know, not the most reliable source but it is usually my starting point before I do more research on more reliable web sites: I often get good search terms from the Wikipedia articles so I get better hits off Google. I'll post more about B12 later after I've done some more research on it. Suffice it to say they put me on 1000 mcg/day. I took my first dose today so it is going to take a while before I start feeling the effects. According to the ID doc, it will take four months or longer to build my blood levels of B12 back up to 'normal' levels. I will have to have a B12 blood test again in four months to see how I'm doing.
The ID doc didn't want to comment on my CT scan until the final report was available.
The upshot of the whole thing is that the ID doc suspects that a majority of my symptoms are being caused by a B12 deficiency. However, they don't know why it is so low. They are thinking along the lines of malabsorption in the small intestines but this can have several causes including but not limited to Celiac or Whipple's disease (yes, I had to look that one up and yes it is rare). They decided that they really wanted a second round of blood tests first before doing a small intestine biopsy for the other diseases. So I donated another four vials of blood to the cause and I have to wait another three weeks for the test results but at least I get to try out the B12 supplements in the meantime. I am so hoping this is going to be my magic bullet. I will be over the moon happy if I suddenly start feeling better just because of a vitamin supplement. I know this isn't the cure but at least I will be able to resume showering standing up. And that will make me a very happy woman.
Whatever the results, I learned a huge thing during this visit. My ID doc and I aren't speaking the same language. What I have is weird and hard to describe. We had the worst time trying to talk about my not being able to walk. It isn't really muscle weakness but a weird combination of lack of energy and lack of spacial awareness. If I close my eyes or I'm in a dark room then I seem to be floating in water and I can no longer tell which way is up. I'm not dizzy per say but I'm definitely having trouble with up and down. He kept asking me if I had 'gait disturbance' and I have no idea what that means. I think I am going to have to get very specific when I describe my symptoms. I can no longer use general but somewhat inaccurate terms such as dizzy or fatigued. They just don't fit what is happening to me. This was a huge breakthrough in communications.
Thursday, October 7, 2010
Blood Work
Just heard from my doctor. I don't have exotic or common infectious diseases. Yeah! However, there is a lot of unexplained inflammation in my body. Next up full body CT scan.
I'm a bit nervous since the last time I was in one I had a bad reaction to the CT scan dye. Hopefully they will pay better attention this time when I tell them I don't feel good during the scan.
I'm a bit nervous since the last time I was in one I had a bad reaction to the CT scan dye. Hopefully they will pay better attention this time when I tell them I don't feel good during the scan.
Wednesday, July 28, 2010
The Diagnosis
I'm not sure I totally understand my blood test results. I should get a copy of them so I can ask someone else what is going on. I saw my virologist today. He said that I have all the markers of having been exposed to Epstein Barr virus including markers for current viral infection but not mono specifically. Hence he declared that I have Mono and that it can take months to resolve. He said the longest he ever saw was an entire year. I asked about CFIDS. He said that it wasn't understood and that there is no proven link between EB and CFIDS. I'll have to do another lit search to get specifics but I'm pretty sure he is wrong on that count. While many people with CFIDS have markers for EB, well duh according to CDC 95% of humans have this marker, it is thought that other viruses can trigger CFIDS besides EB. After all, EB is the most common virus known to man and while CFIDS is more common than AIDS or cancer not everyone gets CFIDS. I guess my next question is when does chronic mono become CFIDS? Is there a difference? It looks like treatment is the same. Bed rest. So does the answer really matter?
http://www.cdc.gov/ncidod/diseases/ebv.htm
http://www.cdc.gov/cfs/
http://www.cdc.gov/ncidod/diseases/ebv.htm
http://www.cdc.gov/cfs/
Thursday, July 22, 2010
In a Black Mood
I'm in a mood today. I'm annoyed by being tired and dizzy all the time. Since my TB test my nausea and sore throat are back. Thankfully not in full force but just enough to be annoying. It bothered my throat to eat my toast this morning.
I was supposed to see the virologist yesterday but the office staff messed up. They couldn't find me in the computer and kept asking me if I had been there before and if I had filled out their stupid forms. It didn't matter how many times I told them I had been there the prior week and that I did indeed fill out their forms. However, since I didn't exist in the system I must not have been there. I know I get a bit dizzy and confused but I'm not that far gone yet. Turns out they misspelled my name and all my information was in the computer under the wrong name. Since my file had been pulled for the doctor to consult with my regular physician they couldn't find my paper file either. It wasn't until they located this with the misspelled name on it that I suddenly popped into existence and my appointment showed up for the following week. I was there a week early. Ugh. I was looking forward to hearing about my blood test and TB test results. Now I have to wait another week.
I can not express how difficult it is to deal with the medical system while you are ill. I feel like I have to gear up for battle every time I have to see someone. Do I have my insurance cards? My referral? My copay? My records? My test results? My symptom list? The paper tracking my body temp? My list of questions? Have you filled out our forms (that no one reads)? Do you mind waiting for two hours for the doctor to see you? Why no I don't. Its not like I have anything better to do. But I do wish they put cots in the waiting rooms so I could have a nap while waiting. It just sucks the life out of me going to these places.
My mum was here for three weeks to keep me company. It was wonderful just to have her sitting in the same room with me. I would nap and she would read books. My hubby and kid are poor company. Unless I'm spry enough to entertain them they leave me after a few minutes due to boredom and lack of conversation. Both have fairly short attention spans. So I have been finding myself alone this week and it bothers me. Normally I'm fine with being alone but I guess I got used to having my mom around.
It has also been hot which makes me cranky even when I am well. The fact that I am uncomfortably hot and not able to get in my pool is hugely annoying.
So I am in a mood today. I'm alone. After three months I still have no idea what is wrong with me or how long it is going to take to get better. I have a virologist that has a ridiculous number of patients which makes it ridiculously hard to see him. And I have a weird mark at the TB test site. Did I burn my arm with pool chemicals by accident at roughly the same location of the TB test? I'm probably going to have to have another blood test to confirm the TB skin test results which means more waiting. I've been waiting for three months. When are things going to change?????
I'm starting a litany of ills. This is basically so that I can keep track of what is going on with my body. Feel free to skip entirely as it is simply a laundry list of what is bothering me today:
Upper back ache
Tender throat
stiff neck
A barely there headache
Slight nausea
dizzy
tinnitus in right ear
stiff jaw on right side
hot
foul mood
99.1F
I was supposed to see the virologist yesterday but the office staff messed up. They couldn't find me in the computer and kept asking me if I had been there before and if I had filled out their stupid forms. It didn't matter how many times I told them I had been there the prior week and that I did indeed fill out their forms. However, since I didn't exist in the system I must not have been there. I know I get a bit dizzy and confused but I'm not that far gone yet. Turns out they misspelled my name and all my information was in the computer under the wrong name. Since my file had been pulled for the doctor to consult with my regular physician they couldn't find my paper file either. It wasn't until they located this with the misspelled name on it that I suddenly popped into existence and my appointment showed up for the following week. I was there a week early. Ugh. I was looking forward to hearing about my blood test and TB test results. Now I have to wait another week.
I can not express how difficult it is to deal with the medical system while you are ill. I feel like I have to gear up for battle every time I have to see someone. Do I have my insurance cards? My referral? My copay? My records? My test results? My symptom list? The paper tracking my body temp? My list of questions? Have you filled out our forms (that no one reads)? Do you mind waiting for two hours for the doctor to see you? Why no I don't. Its not like I have anything better to do. But I do wish they put cots in the waiting rooms so I could have a nap while waiting. It just sucks the life out of me going to these places.
My mum was here for three weeks to keep me company. It was wonderful just to have her sitting in the same room with me. I would nap and she would read books. My hubby and kid are poor company. Unless I'm spry enough to entertain them they leave me after a few minutes due to boredom and lack of conversation. Both have fairly short attention spans. So I have been finding myself alone this week and it bothers me. Normally I'm fine with being alone but I guess I got used to having my mom around.
It has also been hot which makes me cranky even when I am well. The fact that I am uncomfortably hot and not able to get in my pool is hugely annoying.
So I am in a mood today. I'm alone. After three months I still have no idea what is wrong with me or how long it is going to take to get better. I have a virologist that has a ridiculous number of patients which makes it ridiculously hard to see him. And I have a weird mark at the TB test site. Did I burn my arm with pool chemicals by accident at roughly the same location of the TB test? I'm probably going to have to have another blood test to confirm the TB skin test results which means more waiting. I've been waiting for three months. When are things going to change?????
I'm starting a litany of ills. This is basically so that I can keep track of what is going on with my body. Feel free to skip entirely as it is simply a laundry list of what is bothering me today:
Upper back ache
Tender throat
stiff neck
A barely there headache
Slight nausea
dizzy
tinnitus in right ear
stiff jaw on right side
hot
foul mood
99.1F
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