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    Old 01-24-2005, 10:51 AM   #1
    Bothrops
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    What should I do next?

    About 20 months ago I got ill and to this day have yet to recover. My symptoms are lightheadedness, dizziness, brainfog and fatigue, burning sensations in arms, back and shoulders. I have visual problems, full ears, sinusitis, kidney pain, frequent urination, sore throats, joint and muscle pains from lower back to feet. I almost forgot depression, anxiety, night and cold sweats

    I have had plenty of blood work, MRIís and CTís. So far the only thing I have tested positive for is chronic EBV, cytomegalovirus, sinusitis and a + ANA. My hemoglobin and cholesterol are a little high. I have been on all sorts of antibiotics, even though they have not seen infection. After being on doxycycline for three months my bowels were normal and on time and kidney pains stopped. I have been on paxil and effexor now beta blockers with very little help. I will say they have helped my headaches and allowed me to sleep a little better.

    I recently saw an ID Dr. who tested my immune system. Everything he tested me for checked out. He told me that was all he could do. I thought ID Drs. diagnosed CFIDS, does this mean I do not have this condition? He told me to get in touch with my GP. My GP was supposed to send me to a rheumatologist over a month ago. I still have not heard from her, after leaving messages twice.

    Has anyone been through this? I have to get better and go back to work. I have two kids. Our government does not think that I am disabled. I am really confused on what I should do next? Does anyone have a clue to who I can get a proper diagnosis from. Is there any supplements I can take? Is there any other test I should have done? Does this even sound like CFS?

    Sorry for whining

    Derek

     
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    Old 01-24-2005, 01:45 PM   #2
    Bothrops
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    Re: What should I do next?

    Quote:
    Originally Posted by Chrisgj
    Derek, all your symptoms match with hormonal problems, specifically I'm thinking you may have hypothyroidism and hypoadrenalism. Other condtions like Ebstein-Barr can affect these glands.

    The kidney pain may actually be adrenal pain (adrenal glands sit on top of kidneys)

    I recommend you see an osteopath. They are real good at finding causes and are very good with adrenals and thyroid. This site can help you find one.


    Approved by Mod 1
    [url]http://www.osteopathic.org/index.cfm?PageID=findado_main[/url]

    under specialty enter endocrinology and also enter family practise.

    Type of practice enter office-based patient care.

    When you get your adrenal tests you can post them on the Addison's board. Thyroid tests you can post on Thyroid board. Post with all ranges.

    Good luck,
    Chris
    Thanks Chris, I have twice had my thyroid checked, full panels both times. Does that rule out hormonal probs. The pains in my left kidney are difenately on top.

     
    Old 01-24-2005, 06:11 PM   #3
    lillypad
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    Re: What should I do next?

    You might want to google Dr. Jacob Teitelbaum. He is an internist and researcher in the field of chronic fatigue and fibromyalgia. He also has a book you could probably get at your library - From Fatigued to Fantastic. Lots of info on supplements in the book. I am so sorry to hear you are still so ill. Hopefullly, his book or website will be of some help to you, it sure was to me.

     
    Old 01-24-2005, 08:05 PM   #4
    Marsanne
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    Re: What should I do next?

    I am in the exact same situation you are in! You took the words from my mouth - it's been three years ago, since the birth of my daughter and I have yet to see the ol' me.
    My Internist sent me to a Rheumy, tests came up normal except for a +ANA, a + CRP, protein in urinalysis, and cholest. a little high. I am also on Lexapro for an antidepressant, and currently on an antibiotic Tequin for sinusitus. The one and only time I have felt good was when I was put on a dose of Prednisone, my GP thought I might have allergies causing all my symptoms. My thyroid is "mildly" enlarged according to an ultrasound, but they told me not to worry because my thyroid tests were all normal.
    I have an appt scheduled with Osteopathic thanks to a recommendation on this site. I have also considered PT so I can try to get back into some sort of exercise routine without having a flare up.
    Had kidneys checked and my creatinine levels were up but it didn't get a rise out of any of the docs either. I was told to deal with it that maybe it will clear itself up, and come back in 4 mos for a check up.
    If you wouldn't mind - let me know if you get any leads one way or another - I have three young kids to take care of and I too need to get back to money making again!

    Take care!!!
    Marsanne

     
    Old 01-25-2005, 03:30 AM   #5
    peregrine
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    Re: What should I do next?

    Quote:
    Originally Posted by Bothrops
    About 20 months ago I got ill and to this day have yet to recover. My symptoms are lightheadedness, dizziness, brainfog and fatigue, burning sensations in arms, back and shoulders. I have visual problems, full ears, sinusitis, kidney pain, frequent urination, sore throats, joint and muscle pains from lower back to feet. I almost forgot depression, anxiety, night and cold sweats

    I have had plenty of blood work, MRIís and CTís. So far the only thing I have tested positive for is chronic EBV, cytomegalovirus, sinusitis and a + ANA. My hemoglobin and cholesterol are a little high. I have been on all sorts of antibiotics, even though they have not seen infection. After being on doxycycline for three months my bowels were normal and on time and kidney pains stopped. I have been on paxil and effexor now beta blockers with very little help. I will say they have helped my headaches and allowed me to sleep a little better.

    I recently saw an ID Dr. who tested my immune system. Everything he tested me for checked out. He told me that was all he could do. I thought ID Drs. diagnosed CFIDS, does this mean I do not have this condition? He told me to get in touch with my GP. My GP was supposed to send me to a rheumatologist over a month ago. I still have not heard from her, after leaving messages twice.

    Has anyone been through this? I have to get better and go back to work. I have two kids. Our government does not think that I am disabled. I am really confused on what I should do next? Does anyone have a clue to who I can get a proper diagnosis from. Is there any supplements I can take? Is there any other test I should have done? Does this even sound like CFS?

    Sorry for whining

    Derek
    Derek,

    Read back on some of the threads here. There has been a lot of info. posted on CFIDS and the very questions you bring up. There is no definitive test for it, only tests that eliminate what it is not. An elevated ANA is common w/CFIDS and many doctors may suspect Lupus when they see this. But unless it continues to go way up (and you exhibit some of the Lupus symptoms) it is likely still CFIDS. Again, I suggest you go to the CFIDS Foundation home page for information about this illness and to see if you have the qualifying symptoms. Your Thyroid may be involved (because CFIDS affects every organ system) but Hypothyroidism and CFIDS are not the same (I say this from having both for many years). Even though a thyroid problem is treatable, the CFIDS symptoms will persist. Also, many people have CFIDS and no Thyroid problem at all. If indeed, you have CFIDS, I think the most important thing you can do is to become knowledable about it. Then you will have a better idea how to deal with the symptoms. Of course, first you must determine, to your satisfaction, what in fact you do have.

    Wishing you all the best

    Last edited by peregrine; 01-25-2005 at 03:41 AM.

     
    Old 01-25-2005, 06:40 AM   #6
    Bothrops
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    Re: What should I do next?

    Quote:
    Originally Posted by lillypad
    You might want to google Dr. Jacob Teitelbaum. He is an internist and researcher in the field of chronic fatigue and fibromyalgia. He also has a book you could probably get at your library - From Fatigued to Fantastic. Lots of info on supplements in the book. I am so sorry to hear you are still so ill. Hopefullly, his book or website will be of some help to you, it sure was to me.
    lillypad, are you completely recovered from CFS?

     
    Old 01-25-2005, 06:44 AM   #7
    Bothrops
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    Re: What should I do next?

    Quote:
    Originally Posted by Marsanne
    I am in the exact same situation you are in! You took the words from my mouth - it's been three years ago, since the birth of my daughter and I have yet to see the ol' me.
    My Internist sent me to a Rheumy, tests came up normal except for a +ANA, a + CRP, protein in urinalysis, and cholest. a little high. I am also on Lexapro for an antidepressant, and currently on an antibiotic Tequin for sinusitus. The one and only time I have felt good was when I was put on a dose of Prednisone, my GP thought I might have allergies causing all my symptoms. My thyroid is "mildly" enlarged according to an ultrasound, but they told me not to worry because my thyroid tests were all normal.
    I have an appt scheduled with Osteopathic thanks to a recommendation on this site. I have also considered PT so I can try to get back into some sort of exercise routine without having a flare up.
    Had kidneys checked and my creatinine levels were up but it didn't get a rise out of any of the docs either. I was told to deal with it that maybe it will clear itself up, and come back in 4 mos for a check up.
    If you wouldn't mind - let me know if you get any leads one way or another - I have three young kids to take care of and I too need to get back to money making again!

    Take care!!!
    Marsanne
    I will let you know anything I here. Are you still undiagnosed? I was put on prednisone and it made me more dizzy.

     
    Old 01-25-2005, 06:51 AM   #8
    Bothrops
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    Join Date: Jul 2003
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    Re: What should I do next?

    Quote:
    Originally Posted by peregrine
    Derek,

    Read back on some of the threads here. There has been a lot of info. posted on CFIDS and the very questions you bring up. There is no definitive test for it, only tests that eliminate what it is not. An elevated ANA is common w/CFIDS and many doctors may suspect Lupus when they see this. But unless it continues to go way up (and you exhibit some of the Lupus symptoms) it is likely still CFIDS. Again, I suggest you go to the CFIDS Foundation home page for information about this illness and to see if you have the qualifying symptoms. Your Thyroid may be involved (because CFIDS affects every organ system) but Hypothyroidism and CFIDS are not the same (I say this from having both for many years). Even though a thyroid problem is treatable, the CFIDS symptoms will persist. Also, many people have CFIDS and no Thyroid problem at all. If indeed, you have CFIDS, I think the most important thing you can do is to become knowledable about it. Then you will have a better idea how to deal with the symptoms. Of course, first you must determine, to your satisfaction, what in fact you do have.

    Wishing you all the best
    I tested neg. to lupus and lymes twice. The lymes thing makes me a little paranoid after reading how bad the testing is. How does one know that the test are not accurate? I have spent half my life in the SC swamps so it makes sense.

     
    Old 01-25-2005, 01:44 PM   #9
    lillypad
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    Re: What should I do next?


    lillypad, are you completely recovered from CFS?


    Hi, sorry, I missed your post! I am recovering, it will take a while, but I do feel much better. I didn't expect to feel wonderful immediately, as I have been so ill for so long! I had tried everything and didn't get results, so I am pretty amazed!

     
    Old 01-26-2005, 01:35 PM   #10
    Concerned Male
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    Re: What should I do next?

    Quote:
    Originally Posted by lillypad

    lillypad, are you completely recovered from CFS?


    Hi, sorry, I missed your post! I am recovering, it will take a while, but I do feel much better. I didn't expect to feel wonderful immediately, as I have been so ill for so long! I had tried everything and didn't get results, so I am pretty amazed!
    Lillypad,
    May I ask what things, such as supplements, have helped you with your CFS? Thanks.

     
    Old 01-26-2005, 02:49 PM   #11
    lillypad
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    Re: What should I do next?

    Lillypad,
    May I ask what things, such as supplements, have helped you with your CFS? Thanks


    Sure, CM, along with cytomel and levoxthyroxine, and ritalin, I am taking Dr. T's revitalizing formula - it is a powder I mix with water...you can find the ingredients on his website. Also am taking his B-vitamins, the sleep formula (along with ambien) and DHEA (25mg). I am seeing the doc again tomorrow and will probably start ENADA NADH, acetyl l-carnitine, COQ10 and creatine monohydrate - they all help with mitochondrial dysfunction.

    The powder has so many ingredients, if I were to buy them individually I couldn't afford them! Have you read anything on this approach yet?

    Last edited by lillypad; 01-26-2005 at 02:56 PM.

     
    Old 01-28-2005, 05:29 PM   #12
    Concerned Male
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    Re: What should I do next?

    Quote:
    Originally Posted by lillypad
    Lillypad,
    May I ask what things, such as supplements, have helped you with your CFS? Thanks


    Sure, CM, along with cytomel and levoxthyroxine, and ritalin, I am taking Dr. T's revitalizing formula - it is a powder I mix with water...you can find the ingredients on his website. Also am taking his B-vitamins, the sleep formula (along with ambien) and DHEA (25mg). I am seeing the doc again tomorrow and will probably start ENADA NADH, acetyl l-carnitine, COQ10 and creatine monohydrate - they all help with mitochondrial dysfunction.

    The powder has so many ingredients, if I were to buy them individually I couldn't afford them! Have you read anything on this approach yet?
    Thanks Lillypad,
    How did it go at the doctor's?

    I was actually put on Ritalin a couple of weeks ago, and I haven't noticed any improvement in my energy level. You would think that a stimulant would give me at least a little boost of energy? It's weird, cause I can drink/eat a lot of caffeine, and that doesn't give me any energy either. I had a total of eight Methylcobalamin B-12 shots, twice a week, and they didn't help me at all. I'm not sure if anything will give me energy. I had been taking the CO-Q10, but I stopped it. Maybe I should start taking it again and take more time to see if it helps. I've heard that acetyl l-carnitine can be good to take. I never took the ENADA NADH before, but I have read some postive things about it. Is the Creatine a powder?

    I have been to that Dr. T's website before, and it seems like he has helped many people with CFS. The problem is, I don't know what illness/disorder I actually have yet. I might have CFS, but there are still some other things that should be ruled out first.

    I'm going to go back to a naturopathic doctor and see what he has to say. I was given a homeopathic remedy recently, but I haven't started using it. Have you ever taken something homeopathic before?

     
    Old 01-28-2005, 07:07 PM   #13
    lillypad
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    Re: What should I do next?

    Hi CM, the doc put me on CoQmelt, 100 mg. If you search for it, you can read about why it is superior to other dosage forms. And acetyl l-carnitine - 2,000mg. It is important that it IS ACETYL-l carnitine, as some of the other forms can have negative effects. Doc said NADH and creatine monohydrate are not very effective and in his opinion are not worth taking.

    How much ritalin? What type - long acting or short acting? Seems some do better on one that the other, and you have to take enough!

    As far as homeopathic is concerned, no, I have not been treated with any. What did he give you? I only know one person who has had good luck in that arena.

    Can a naturpathic doc prescribe meds?

     
    Old 01-29-2005, 12:20 PM   #14
    woozyguy
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    Re: What should I do next?

    hi
    What does Acetly L Carnitine do?
    Martin

     
    Old 01-30-2005, 03:53 PM   #15
    invisible1234
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    Re: What should I do next?

    Quote:
    Originally Posted by Bothrops
    About 20 months ago I got ill and to this day have yet to recover. My symptoms are lightheadedness, dizziness, brainfog and fatigue, burning sensations in arms, back and shoulders. I have visual problems, full ears, sinusitis, kidney pain, frequent urination, sore throats, joint and muscle pains from lower back to feet. I almost forgot depression, anxiety, night and cold sweats

    I have had plenty of blood work, MRIís and CTís. So far the only thing I have tested positive for is chronic EBV, cytomegalovirus, sinusitis and a + ANA. My hemoglobin and cholesterol are a little high. I have been on all sorts of antibiotics, even though they have not seen infection. After being on doxycycline for three months my bowels were normal and on time and kidney pains stopped. I have been on paxil and effexor now beta blockers with very little help. I will say they have helped my headaches and allowed me to sleep a little better.

    I recently saw an ID Dr. who tested my immune system. Everything he tested me for checked out. He told me that was all he could do. I thought ID Drs. diagnosed CFIDS, does this mean I do not have this condition? He told me to get in touch with my GP. My GP was supposed to send me to a rheumatologist over a month ago. I still have not heard from her, after leaving messages twice.

    Has anyone been through this? I have to get better and go back to work. I have two kids. Our government does not think that I am disabled. I am really confused on what I should do next? Does anyone have a clue to who I can get a proper diagnosis from. Is there any supplements I can take? Is there any other test I should have done? Does this even sound like CFS?

    Sorry for whining

    Derek
    Derek,

    I have been dealing with lightheadedness, dizziness, brainfog, fatigue and muscle weakness for about 3 years now. It hit me pretty hard all at once and the one thing that I think made a difference was taking armour thyroid. Now, 3 years later, I still suffer from being "off balance", minor dizziness and minor fatigue but it is bearable and I work full time and have 2 kids.

    My thyroid level was not very much out of the range, but my doctor still put me on thyroid medication. I have a chronic positive ANA, the latest was 1:320 and I see a rheumatologist because of that and he is willing to treat me just based on the positive ANA and my symptoms even though I have not been diagnosed with any specific disease that a rheumatologist treats. I was on plaquanil for awhile but stopped because I was getting vertigo. I have an appointment with him in a couple of months and I am sure he will let me try another similar medication.

    So, my advice to you is to make sure you see a rheumatologist and get treated.....just based on your positive ANA. AND...a positive ANA is common in thyroid disease. Do you get copies of your blood tests?

     
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