Discussions By Condition: I cannot get a diagnosis.

My daughter needs help, she's been sick for almost 9 years

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: mmkauffman
  • August 20, 2010
  • 03:29 PM

Before I got sick I was 32 years old, healthy, always on the go, worked, raised a family, and took care of ill grandparents. I had been diagnosed with hypothyroidism but it was under control with Synthroid, 150 mg a day for 6 years. I had saline breast implants in 1998. Then in February 2002 started with feeling lethargic, pulse around 50, blood pressure would drop to 70/40 and I would feel dizzy and just have to lie down. I went to my family doctor and had my thyroid checked, it came back normal. A few weeks later I started having severe abdominal pain and ribs hurting. I went to the emergency room 3 times that week. They took my gall bladder on the 3rd visit and I was hospitalized for 9 days. I was very sick and had a lot of inflamation, they gave me huge doses of IV steroids due to the inflamation. They also diagnosed me with celiac sprue. I was discharged and went home on a strict gluten free diet but never got any better and couldn’t even get out of bed.
By July I’d had enough and went to Indiana University Medical Center in Indianapolis where they did an EERCP. My sphincter was constricted so they put a stint in and sent me home. After I had the gallbladder surgery in February 2002 I had diarrhea 10-15 times a day, everyday which continued until December of 2003 no matter what medicine I was given. IU said that it was post infectious diarrhea and it could take 6 months to go away, yet it continued much longer.
After this started I spent 170 plus days in and out of the hospital and emergency room over the next 14 months. Meanwhile other symptoms started (list attached). I have been told it is all in my head. Throughout all of this I’ve had my father taking care of me and he watched all of this 24 hours a day along with family and friends. I have seen psychiatrists back then and again now as the illness has taken such a toll on me. It is so frustrating to be this disabled and don’t seem to be able to get better. I did have insurance the first year and because it was pre-existing they covered my medical expenses until March of 2003. Then Medicaid took over because of being disabled. My mother and family has spent over $30,000.00 out of pocket. We even had my implants removed in case that was what was causing me to be sick. It didn’t help. I have at least 5 psychiatrists that believe this is physical and not in my head. I have had some wonderful doctors but they have just said it is too complicated or they just do not know what is wrong. My options were limited because of being on Medicaid. I’m not allowed to seek doctors out of state or specialty doctors that accept cash instead of Medicaid. I guess what I’m looking for is a someone to look over my symptoms and my specialty testing results that has been done and maybe someone will recognize something so that I could be fixed. I know now that there are a lot of people who become ill and doctors don’t always know what is wrong. Testing can be wrong and a lot of diseases look like other ones. But I just have to keep trying because I have no life now and cannot take care of myself or my two daughters who would like to have a mom again.
I don’t know where else to turn. So if there is anything that you could do to help me please contact me. I honestly know that I am physically sick and am trying so hard to keep fighting to find out what’s wrong with me. Thank you so much for taking the time to read this. I appreciate it very much. I know this may not get me better but laying in bed my chances are zero so I have to do whatever I can to get my life back as a functioning person in society again.

These are the symptoms that are the most bothersome now but no two days are the same. I no longer have ER visits or hospitalizations as I did in the first 1 ½ years, but that was due to the constant diarrhea & vomiting which is no longer a problem. I was on prednisone as high as 50 mg a day which every time lowered even slightly I would be sick & have addrenal failure. Doctors have since slowly lowered the dosage.
A lot of my symptoms look like it could be Lymes Disease, Addison’s Disease, MS, Lupus among other things. We just don’t know. Just when one doctor will say they think it’s something another doctor will say it’s not. I don’t know what to do other than when I am able to function again I will know that’s what was wrong with me. I was bit by something back in January/February of 2002 and had a rash on my face. I had spent time in Kentucky and had just gotten back from a 2 week vacation in Florida.

SYMPTOMS: *feels like having the flu everyday (food poisoning, hangover); *severe malaise, fatigue, very weak; *stabbing pain, burning - especially in muscles; *lethargic, confusion, memory loss; *episodes of not being able to handle simple problems, yelling, crying, becoming over whelmed; *sleep deprived, no rem sleep; *night sweats, soaking wet when I wake up; *sensitive to noise, become very aggrevated; *red eyes, burn all the time (blood vessels in eyes break); *jerking & twitching, especially if touched (skin burning); *I fall asleep when eat food; *neck becomes stiff, creaks & cracks; *body temperature usually low (96.5-97.8); *very sensitive to smells; *rashes; *stomach distention (as if I look 6 months pregnant); *shakiness, anxiety, depression; *my symptoms are usually worse during daytime, seem to be able to function more at evening time; *weight fluctuation from 98lbs to 170lbs; *when doctors have tried to wean me off steroids cortical levels drop to critical levels and I get hospitalized.

PROCEDURES THAT HAVE BEEN PERFORMED:
*radiation for thyroid/graves disease (August of 1997); *breast implants (March of 1998); *gallbladder removed (February of 2002); EERCP / stint implanted (June of 2002); *7 colonoscopies (February 2002-2005); *7 endoscopics (February 2002-2005); *2 EERCP (August 2002-2004); *camera pill swallowed to look at GI tract (2004); *pancreas stimulation test at Mayo Clinic (2002); *intrathecal pain pump installed (August 7, 2008); *5 pic lines between 2002-2004; *muscle biopsy (May 2010); *Cpap, sleep apnea (2007) -- does not help.

MEDICINES:
*vitiman B-12 - dissolvable/Lorazapham 1mg-2mg as needed; *Lyrica 75mg 2x day (started 3/5/09); *Levoxyl 12.5mcg, 1 x day (started 1997); *Cytomel 12.5 mcg, 1 x day (started 1997); *Prednisone 2.5mg, 1 x day (started 2003 - changed dose 10/30/08); *Hydrocortisone 20mg (am), 20mg (pm); *Ibuprofen 600 mg as needed; *Vitamin C 1000 mg daily; intrathecal pain pump (with diladid) implanted August of 2008 through pain clinic.
I am aware that these medicines have a lot of side effect which have some of the symptoms that I have now but I was not on these medicines before this began.
I smoke one pack of cigarettes per day, but have stopped when hospitalized. I do not drink alcohol at all since I became sick and do not do any illegal drugs.

I’ve seen two Lyme literate doctors, one died so I went to New York which is a 10 hour drive from where I live. Both diagnosed me with Lymes, Babesis, Morgonella, Herpes 6 virus, E.B.V. I’ve been treated with Mepron - 800 mg + Z pack for about 1 month, but felt no better. For 4 years I was on huge doses of pain meds including Fentonyl patches and Oxycotin, I’m off both now. The intrathecal pain pump implant atleast allows me to be off all oral pain meds and gives me some relief. We are working on getting a pic line put in to start Rocephin for Lymes and due to the doctor who was ordering my treatment not having hospital priveleges as she is 3 hours away we couldn’t get it done yet. We would need to move to that area for about 1 month for treatment but don’t know for sure if I definitely have Lymes because one local infectious disease doctor says yes I do and yet the others say that I don’t. It has been this way throughout my whole sickness, whether it is the diagnosis of my celiac sprue or my sleep apnea.

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3 Replies:

  • The symptoms are like screaming lyme to me. Ive known many chronic lyme sufferers over the years and your post is so a like their stories. I'd take my guess at lyme with Addisons (or close to that) thrown in on top. Most with chronic lyme, dont get better with just one months worth of meds............ Possibly Chronic Fatigue Immunity dysfunction syndrome http://wwcoco.com/cfids/bernesx.html (thou i think you sound more lymie thou both of these conditions can drop BP and cause your symptoms). 10% of those who get Lyme.. end up with CFIDS...... Ive also read that saline implants have an outer coating of silicone!! which thou safer then the old silicone implants, the silicone of the saline ones can in some leak and end up causing many health issues
    taniaaust1 2267 Replies
    • August 21, 2010
    • 02:09 PM
    • 0
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  • Before I got sick I was 32 years old, healthy, always on the go, worked, raised a family, and took care of ill grandparents. I had been diagnosed with hypothyroidism but it was under control with Synthroid, 150 mg a day for 6 years. I had saline breast implants in 1998. Then in February 2002 started with feeling lethargic, pulse around 50, blood pressure would drop to 70/40 and I would feel dizzy and just have to lie down. I went to my family doctor and had my thyroid checked, it came back normal. A few weeks later I started having severe abdominal pain and ribs hurting. I went to the emergency room 3 times that week. They took my gall bladder on the 3rd visit and I was hospitalized for 9 days. I was very sick and had a lot of inflamation, they gave me huge doses of IV steroids due to the inflamation. They also diagnosed me with celiac sprue. I was discharged and went home on a strict gluten free diet but never got any better and couldn’t even get out of bed.By July I’d had enough and went to Indiana University Medical Center in Indianapolis where they did an EERCP. My sphincter was constricted so they put a stint in and sent me home. After I had the gallbladder surgery in February 2002 I had diarrhea 10-15 times a day, everyday which continued until December of 2003 no matter what medicine I was given. IU said that it was post infectious diarrhea and it could take 6 months to go away, yet it continued much longer.After this started I spent 170 plus days in and out of the hospital and emergency room over the next 14 months. Meanwhile other symptoms started (list attached). I have been told it is all in my head. Throughout all of this I’ve had my father taking care of me and he watched all of this 24 hours a day along with family and friends. I have seen psychiatrists back then and again now as the illness has taken such a toll on me. It is so frustrating to be this disabled and don’t seem to be able to get better. I did have insurance the first year and because it was pre-existing they covered my medical expenses until March of 2003. Then Medicaid took over because of being disabled. My mother and family has spent over $30,000.00 out of pocket. We even had my implants removed in case that was what was causing me to be sick. It didn’t help. I have at least 5 psychiatrists that believe this is physical and not in my head. I have had some wonderful doctors but they have just said it is too complicated or they just do not know what is wrong. My options were limited because of being on Medicaid. I’m not allowed to seek doctors out of state or specialty doctors that accept cash instead of Medicaid. I guess what I’m looking for is a someone to look over my symptoms and my specialty testing results that has been done and maybe someone will recognize something so that I could be fixed. I know now that there are a lot of people who become ill and doctors don’t always know what is wrong. Testing can be wrong and a lot of diseases look like other ones. But I just have to keep trying because I have no life now and cannot take care of myself or my two daughters who would like to have a mom again.I don’t know where else to turn. So if there is anything that you could do to help me please contact me. I honestly know that I am physically sick and am trying so hard to keep fighting to find out what’s wrong with me. Thank you so much for taking the time to read this. I appreciate it very much. I know this may not get me better but laying in bed my chances are zero so I have to do whatever I can to get my life back as a functioning person in society again. These are the symptoms that are the most bothersome now but no two days are the same. I no longer have ER visits or hospitalizations as I did in the first 1 ½ years, but that was due to the constant diarrhea & vomiting which is no longer a problem. I was on prednisone as high as 50 mg a day which every time lowered even slightly I would be sick & have addrenal failure. Doctors have since slowly lowered the dosage. A lot of my symptoms look like it could be Lymes Disease, Addison’s Disease, MS, Lupus among other things. We just don’t know. Just when one doctor will say they think it’s something another doctor will say it’s not. I don’t know what to do other than when I am able to function again I will know that’s what was wrong with me. I was bit by something back in January/February of 2002 and had a rash on my face. I had spent time in Kentucky and had just gotten back from a 2 week vacation in Florida. SYMPTOMS: *feels like having the flu everyday (food poisoning, hangover); *severe malaise, fatigue, very weak; *stabbing pain, burning - especially in muscles; *lethargic, confusion, memory loss; *episodes of not being able to handle simple problems, yelling, crying, becoming over whelmed; *sleep deprived, no rem sleep; *night sweats, soaking wet when I wake up; *sensitive to noise, become very aggrevated; *red eyes, burn all the time (blood vessels in eyes break); *jerking & twitching, especially if touched (skin burning); *I fall asleep when eat food; *neck becomes stiff, creaks & cracks; *body temperature usually low (96.5-97.8); *very sensitive to smells; *rashes; *stomach distention (as if I look 6 months pregnant); *shakiness, anxiety, depression; *my symptoms are usually worse during daytime, seem to be able to function more at evening time; *weight fluctuation from 98lbs to 170lbs; *when doctors have tried to wean me off steroids cortical levels drop to critical levels and I get hospitalized. PROCEDURES THAT HAVE BEEN PERFORMED:*radiation for thyroid/graves disease (August of 1997); *breast implants (March of 1998); *gallbladder removed (February of 2002); EERCP / stint implanted (June of 2002); *7 colonoscopies (February 2002-2005); *7 endoscopics (February 2002-2005); *2 EERCP (August 2002-2004); *camera pill swallowed to look at GI tract (2004); *pancreas stimulation test at Mayo Clinic (2002); *intrathecal pain pump installed (August 7, 2008); *5 pic lines between 2002-2004; *muscle biopsy (May 2010); *Cpap, sleep apnea (2007) -- does not help. MEDICINES:*vitiman B-12 - dissolvable/Lorazapham 1mg-2mg as needed; *Lyrica 75mg 2x day (started 3/5/09); *Levoxyl 12.5mcg, 1 x day (started 1997); *Cytomel 12.5 mcg, 1 x day (started 1997); *Prednisone 2.5mg, 1 x day (started 2003 - changed dose 10/30/08); *Hydrocortisone 20mg (am), 20mg (pm); *Ibuprofen 600 mg as needed; *Vitamin C 1000 mg daily; intrathecal pain pump (with diladid) implanted August of 2008 through pain clinic.I am aware that these medicines have a lot of side effect which have some of the symptoms that I have now but I was not on these medicines before this began.I smoke one pack of cigarettes per day, but have stopped when hospitalized. I do not drink alcohol at all since I became sick and do not do any illegal drugs. I’ve seen two Lyme literate doctors, one died so I went to New York which is a 10 hour drive from where I live. Both diagnosed me with Lymes, Babesis, Morgonella, Herpes 6 virus, E.B.V. I’ve been treated with Mepron - 800 mg + Z pack for about 1 month, but felt no better. For 4 years I was on huge doses of pain meds including Fentonyl patches and Oxycotin, I’m off both now. The intrathecal pain pump implant atleast allows me to be off all oral pain meds and gives me some relief. We are working on getting a pic line put in to start Rocephin for Lymes and due to the doctor who was ordering my treatment not having hospital priveleges as she is 3 hours away we couldn’t get it done yet. We would need to move to that area for about 1 month for treatment but don’t know for sure if I definitely have Lymes because one local infectious disease doctor says yes I do and yet the others say that I don’t. It has been this way throughout my whole sickness, whether it is the diagnosis of my celiac sprue or my sleep apnea.Have you had a Gastric Emptying Study? I am thinking about the abdominal distention. Could be a Gastric Motility problem along with other problems. Just a thought.
    Anonymous 42789 Replies
    • August 24, 2010
    • 07:18 AM
    • 0
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  • Have you had a Gastric Emptying Study? I am thinking about the abdominal distention. Could be a Gastric Motility problem along with other problems. Just a thought.I believe back in oct 2002 at mayo they had done that test.Yet back then I weighed 98 lbs. & had malabsorbtion w/ chronic diareaha.I now weigh @178lbs.The biggest problem is I have had so many test done in the last 8+ yrs. most of them in the first 2 years. I am still so sick yet some of the symptoms have changed.When I do go to a doctor who trys to figure out something they have suggested starting all over again as some diseases can not show up for awhile.Other drs. will say :you have had all the tests done.They do not have to be sick everyday.I am in the process of going to Cleveland clinic in Sept. & considering the long term picline antibiotics for Lymes.I get so frustrated as I just want my life back, to be able to function in society again.I never realized how many sick people there are until I got on this website.It helps to know I am not alone when it comes to not being able to get a diagnosis,yet I feel so bad for others.I have been sick for so long now that there are times when I let things go (thinking it is just part of all my symptoms)when there has been something new. I will suggest to my family dr this test as my stomach has been like this for 2 yrs. now.Thankyou for your input I really appreciate any suggestions that could possibly help.
    Anonymous 42789 Replies
    • August 25, 2010
    • 02:23 PM
    • 0
    Flag this Response
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