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peabody88
@peabody88

Posts: 57
Joined: Sep 16, 2018

What if it is "All in My Head"?

Posted by @peabody88, Wed, Sep 19 11:00pm

I'm sure the phrase "it's all in your head" is very familiar to most Mayo Clinic patients. But how do you KNOW it isn't all in your head, or a psychosomatic condition?

I've been having chronic health issues since June. I had some definite abnormalities in the beginning with an elevated WBC count (although not outrageous), but now, I have weird test results (mostly on the infectious disease side, or non-specific markers like CRP or lactate dehydrogenase), but as time's gone on nothing that is like wildly abnormal or shouts "DING DING DING" or explains everything.

Mid-July, after a ton of testing and the only thing consistently abnormal in my blood work for two weeks was a slightly elevated CRP, my primary care doctor said if the multitude of specialists I was seeing didn't come up with anything else, I either needed to "just push through it" or apply to Mayo (the slightly elevated CRP could be from something as minor as gingivitis, she said). In August, after the results of my Upper Endoscopy biopsy was negative for H. Pylori (although that's another side story), the gastroenterologist suggested my gastritis could be caused by anxiety.

Ironically, I wasn't all that anxious until it was suggested that my problems were all the result of anxiety. I made an appointment with a psychologist specializing in somatic disorders (although I wasn't able to get in until 9/25), but I've been agonizing over that possibility ever since. That fear, as well as a feeling that "I'm not quite sick enough", is a large part of what kept me from applying to Mayo for so long despite urging from family, colleagues and two of my specialists.

I guess at what point SHOULD a person accept "it's all in my head" as the diagnosis? There's two totally different stories — person A persists through every "all's fine" diagnosis and finds out she has XXXX, or person B persists through every "all's fine" diagnosis and finds out she really IS fine, it's psychological. Is there a way to know before you run out of tests/money/disability and embarrass yourself in front of your friends, family and Mayo which you are? Anything that is a red flag for psychosomatic or psychological illness as a cause rather than physical illness? How do you stay confident that what you feel is real and you're doing the right thing?

Would appreciate any insights, especially from anyone with a somataform disorder or long journey to diagnosis at Mayo.

REPLY

Good day, @peabody88 Interesting post and something I believe is true … every person, at some time or another, has uttered the words 'is it all in my head?' I am Scott and my wife was a patient at Mayo all her adult lie as were several others of our family members. Based on our experiences I can say it is a great place with marvelous medical professionals at every turn!

To me, one of the best things about Mayo is they see the obscure, rare, difficult, and different basically all the time so if there is something they will most likely be the ones to diagnose it! Second, if you do get a full 'thump and tap' at Mayo and they say you are healthy, you can pretty much take that to the bank and know you are A-OK!

Sounds like it might be a good idea, especially since you say your anxiety is increasing.

Strength, courage, and peace!

@peabody88 this is an interesting post and at one time my doctors also had me convinced that it was all in my head (over three years) despite the continued progression of my symptoms. Could you share with us your symptoms and exclusions thus far?

The Mayo Clinic is touted as one of the best medical facilities in the world, however, I can tell you that they have their inefficiencies as well. After a couple years of pondering whether to go I finally submitted my application in May 2018 and I was accepted in less than a week. The following month we flew down from Canada and started my appointments with doctors. After the first appointment the lead doctor overseeing my file advised that she had to leave the country for a family emergency. I don’t understand why she did the initial consult if she already knew she was leaving. I was advised that another specialist would be taking over my file. Unfortunately, that person called in sick the next day and in the end no one was overseeing my file. There were several other mistakes as well and some of the worst came from the billing department. By the end of day three my husband lodged a complaint with the facility and we are still dealing with invoices that were double and triple billed. I’ve sought legal advice from an American attorney about the invoicing issues and his advice was to stop paying the invoices.

In the end, we wasted over $20k and we walked away no further ahead. My application was for hyperammonemia with unknown aetiology so they actually had something to go off of but rather than refer me to genetics, metabolic, etc. they literally did all the same tests that my doctors had previously run in Canada. I was never questioning the tests and procedures that were conducted back home but I realized that we put all our trust into these doctors and I truly thought they would use their best efforts to help me. Unfortunately, I feel like we were duped and we are not the kind of people that are easily pushed over, I’m a lawyer and my husband is an eye doctor. So in the end, would I recommend the Mayo to provide you with a diagnosis? NO, I would not, unless they provide you with a clear path of exactly what tests/procedures they plan to do and why. Unfortunately, if you ask for detailed information prior to seeing a doctor the response will be “you need to be seen by a doctor first”. Don’t waste your money and instead find yourself a new primary doctor that believes you and wants to help you find a solution. I did this upon returning home from Mayo and it’s made a world of difference and I finally have a doctor and a geneticist advocating on my behalf.

I hope this is helpful and if you want to reach out to me directly, feel free to do so.

@IndianaScott

Good day, @peabody88 Interesting post and something I believe is true … every person, at some time or another, has uttered the words 'is it all in my head?' I am Scott and my wife was a patient at Mayo all her adult lie as were several others of our family members. Based on our experiences I can say it is a great place with marvelous medical professionals at every turn!

To me, one of the best things about Mayo is they see the obscure, rare, difficult, and different basically all the time so if there is something they will most likely be the ones to diagnose it! Second, if you do get a full 'thump and tap' at Mayo and they say you are healthy, you can pretty much take that to the bank and know you are A-OK!

Sounds like it might be a good idea, especially since you say your anxiety is increasing.

Strength, courage, and peace!

Jump to this post

@IndianaScott – Oh for sure, I've already sent in my physician's referral and submitted an insane amount of medical documentation; this question just continues to haunt me and I thought I'd see if anyone else had any insights or advice. Beyond the emotional toll, the possibility of going to such an extreme and forking out such a hefty chunk of money just to be told "you're fine, it's all in your head" is terrifying to me and would just be devastating, not to mention something I can't really afford (especially considering you'd then have to go home and spend another fortune on counseling lol). In addition, I have some decisions to make in the meantime about whether to continue pursuing answers here in the interim, particularly when what they want to pursue is fairly invasive/unpleasant (cough, colonoscopy, cough cough). If that's going to be the answer, I'd prefer to cut to the chase and start dealing now, but I just don't know how you know.

@legallyred

@peabody88 this is an interesting post and at one time my doctors also had me convinced that it was all in my head (over three years) despite the continued progression of my symptoms. Could you share with us your symptoms and exclusions thus far?

The Mayo Clinic is touted as one of the best medical facilities in the world, however, I can tell you that they have their inefficiencies as well. After a couple years of pondering whether to go I finally submitted my application in May 2018 and I was accepted in less than a week. The following month we flew down from Canada and started my appointments with doctors. After the first appointment the lead doctor overseeing my file advised that she had to leave the country for a family emergency. I don’t understand why she did the initial consult if she already knew she was leaving. I was advised that another specialist would be taking over my file. Unfortunately, that person called in sick the next day and in the end no one was overseeing my file. There were several other mistakes as well and some of the worst came from the billing department. By the end of day three my husband lodged a complaint with the facility and we are still dealing with invoices that were double and triple billed. I’ve sought legal advice from an American attorney about the invoicing issues and his advice was to stop paying the invoices.

In the end, we wasted over $20k and we walked away no further ahead. My application was for hyperammonemia with unknown aetiology so they actually had something to go off of but rather than refer me to genetics, metabolic, etc. they literally did all the same tests that my doctors had previously run in Canada. I was never questioning the tests and procedures that were conducted back home but I realized that we put all our trust into these doctors and I truly thought they would use their best efforts to help me. Unfortunately, I feel like we were duped and we are not the kind of people that are easily pushed over, I’m a lawyer and my husband is an eye doctor. So in the end, would I recommend the Mayo to provide you with a diagnosis? NO, I would not, unless they provide you with a clear path of exactly what tests/procedures they plan to do and why. Unfortunately, if you ask for detailed information prior to seeing a doctor the response will be “you need to be seen by a doctor first”. Don’t waste your money and instead find yourself a new primary doctor that believes you and wants to help you find a solution. I did this upon returning home from Mayo and it’s made a world of difference and I finally have a doctor and a geneticist advocating on my behalf.

I hope this is helpful and if you want to reach out to me directly, feel free to do so.

Jump to this post

@legallyred – I'm so sorry; that's awful! I'm glad you ended up finding your answers though, and I hope you're doing well now.

Hmm, where to start? At the end of May I went hiking in the woods in Missouri, sans bug spray (idiotic move, I know), and developed a rash on my chest several days later (it initially looked/I initially thought I had been scraped by a tree branch or something, but then the area around it developed into a slowly expanding red circle). Not itchy, not painful — I just ignored it. Near the end of the week, I developed a really sore throat, nasal drainage, a headache, chills, extreme fatigue, a slight cough and decreased appetite. Went to the doctor, figuring I had strep again (had a recurrent or chronic case I couldn't kick for the first half of last year) or a sinus infection (which I've struggled with all my life), and thought I'd asked about the rash while I was there too. Strep test was negative, and the doctor actually seemed more concerned about the rash then the sinus stuff. Her office note officially diagnoses pharyngitis, cellulitis and rhinorrhea, and she started me on Sulfamethoxazole-Trimethoprim. Cool, whatever, I head off into the sunset and take my first dose. About an hour later, I develop INSANE urinary frequency, being barely able to hold it for 10-15 minutes before I have to go. After about an hour of this, I called both the doctor's office and the pharmacy (I couldn't even hold it while I was on hold for the pharmacist — I had to put it on mute and pee, which I've never done before) and asked if this could be a side effect; they said no, and told me to "keep pushing fluids". A miserable night ensues; in addition to everything already mentioned, I get these like crazy swings between hot/cold and when I eventually take my temperature it's 100.8. I take a Tylenol and suffer agonizingly until the Urgent Care opens the next morning (a Saturday) at 8am. The on-call doctor I phone again reiterates this isn't a reaction to the Sulfa and tells me to visit Urgent Care, so I begin to think maybe it's another kidney stone (I've had two prior). The doctor at Urgent Care says "it's an allergic reaction to Sulfa" and my rash is poison ivy and sends me on my way. The on-call doctor is skeptical of this and puts me on Doxycycline to replace the Sulfa for the rash. The peeing does improve somewhat by that evening (can maybe last 45-an hour between pees). Meanwhile, my rash has been expanding (the doctor had told me to draw a circle around it in permanent marker and call if the redness expanded beyond the marker after 48 hours on the antibiotic) so I return on Monday and they draw blood work (High WBCs, Neutro # and slightly high CRP). That Friday I'm still complaining of urinary frequency (every 1-2 hours when awake, 3-4 when trying to sleep), fatigue, chills and now nausea too. Doctor does a pelvic exam, says there's a lot of discharge, and puts me on an antifungal for an acute vaginal or yeast infection (this later comes back negative).

So, I just realized my "brief summary" is not going to be all that brief lol. To make it simple, I suppose since then everything's stayed pretty much the same — I have alternating periods of low-grade fever (peaks at 99.7-100.8, not even considered officially a fever by some), extreme fatigue, nausea/lack of appetite, odd bowel stuff (some mucous during flatulence, some constipation, some unusual chunks of red or white colors), hot flashes where I get super hot all over and flushed, still the vaginal discharge/redness and some discomfort, and a variety of other random but mostly temporary things like a swollen tongue, bloating, skin sensitivity, etc. I've been on two months of Doxycycline for potential Lyme (initial Western Blot was reactive to one band, most recent Western Blot increased to three — neither of which are the five the CDC requires for official diagnosis); several courses for anti-fungals because everyone who does a pelvic exam thinks I have a yeast infection (though the test has only come back with "slight growth" once); several meds for overactive bladder; multiple supplements and a week and a half of Tetracycline that I'm not even sure what it was supposed to be for, just that the test eventually came back negative so they stopped it. The urinary frequency is a matter of debate — I've been trying to hold it longer, and I can last 2-3 hours now, which the urologist said cool, that's normal, you're all good, but what bothers me is A) this holding it is painful where my bladder feels uncomfortably full, and then when I do go it's hard to start and burns slightly — which worries me that it's not healthy; and B) I find the idea that I could have a camel bladder one day (I literally would go all day at work without using the bathroom — I know, I know, but I just get really into my work), and then suddenly can barely hold it to make it every 2-3 hours? Even if it was an aging thing, usually it would come on gradually, not just one day you can hold it all day and the next you can barely hold it an hour. So, it's up to you whether you agree with the urologist and consider it an improvement or "normal".

Lab work wise, nothing is insanely abnormal. My CRP has been elevated the whole time, peaking at 2.8 (max in reference is 0.9) near the end of June and alternating between 2.2 and 1.5 in measurements since (could be something as innocuous as gingivitis, my primary care said). ESR is elevated, peaking at 33 mid-July (max in reference 20) and apparently on a downward trend since (last measurement at 22 mid-August. MCH consistently but only slightly low; RDW has been increasing and was flagged high at last measure on 8/24 at 19.3% (max reference is 14.5%).

Endocrinology: Low Luteinizing Hormone (

Endocrinology: Low Luteinizing Hormone (under 0.2) and low FSH (under 0.7); ACTH was normal (8 with range of 6-50) and total cortisol normal (9.1 with range of 4-22). Hemoglobin A1c normal at 5.4. I will forever believe I have some kind of thyroid abnormality, but everything's technically in range. TSH just seems to have huge fluctuations (reference range .47-4.68): 0.8 pre-illness at end of February; 1.58 in June; 1 in July 10; 2.93 two weeks later on July 23; and 1.81 a month later Aug. 24. TT3 was slightly high July 23 (1.71 out of max 1.62), but insignificant according to endocrinologist. Free T4 was 0.77 on July 23 and 1.2 July 10. Thyroid Peroxidase (TPO) Ab negative at 0.5 and Antithyroglobulin (TG) Ab at 0. Historically, I was subclinical hyperthyroid in 2004 when I couldn't maintain a healthy weight and had slightly increased iodine uptake and two small lesions; 2009, suddenly gained 30 pounds and both thyroid lobes were enlarged and small nodes in both lobes with normal iodine uptake; now, both lobes normal size with three nodules in left lobe. My mom had a thyroidectomy for suspicious nodules and now takes thyroid hormone.

Gastroenterology: Upper GI endoscopy showed "Striped moderately erythematous mucosa without bleeding was found in the gastric antrum"; biopsy for H. pylori was negative, but I've been on Pantoprazole for years and research shows that can cause false negatives in H. pylori biopsy. My gallbladder was removed for gallstones in 2016 and they took my appendix out too because it was in the wrong place; CT of abdomen and pelvis shows a fat-containing incisional hernia at my umbilicus now. A biopsy of my liver at that time showed "The surrounding liver shows mixed inflammation of the portal tracts, which is mild to moderate, and contains neutrophils, eosinophils and lymphocytes, predominantly. Foamy histiocytes are also seen in association with the portal tract." Still not sure if that's potentially involved somehow. Imaging today shows a 4cm focal nodular hyperplasia, benign-appearing, but it can't tell you the pathology of the liver. My LD5, which is correlated with the liver and skeletal muscle, was elevated at 25% with range of 3-14% (LD1 was slightly low at 18% with range of 19-38%; LD2 was slightly low at 27% with range of 30-43%; LD3 was normal at 20% with range of 16-26%; LD4 was high normal at 11% with range of 3-12%). Alkaline phosphatase was slightly high at 134 (ref 38-126) in early July, but dropped to 93 on 7/26. ALT and AST have been normal, although AST was slightly higher than ALT at 28 to 26 on 6/25. Total bilirubin has been slightly low at 0.1 on 6/8 and 7/26. Celiac biopsy and blood panel were negative. I've been having some abnormal bowel stuff, and mom has ulcerative colitis, so now they want to do a colonoscopy. I also had a bad episode of abdominal pain last Friday, so am debating hernia repair surgery.

Infectious disease: Other than the Lyme mentioned above, only other weird thing was a randomly positive Quantiferon Gold TB blood test, but the chest X-ray and CT were both normal and I'm low risk, so my infectious disease specialist is thinking it was a false positive (just re-tested yesterday); I had negative TB tests in 2015 (skin) and 2011 (skin AND blood). Everything else has been negative – blood cultures, CMV, Epstein-Barr (showed pattern of past infection — last negative in 2007), Q fever, histoplasmosis, ehrlichia, baronella, tularemia, West Nile, Cryptococcus, hepatitis, ASO. Immunoglobulins and procalcitonin were in normal range.

@peabody88

Endocrinology: Low Luteinizing Hormone (under 0.2) and low FSH (under 0.7); ACTH was normal (8 with range of 6-50) and total cortisol normal (9.1 with range of 4-22). Hemoglobin A1c normal at 5.4. I will forever believe I have some kind of thyroid abnormality, but everything's technically in range. TSH just seems to have huge fluctuations (reference range .47-4.68): 0.8 pre-illness at end of February; 1.58 in June; 1 in July 10; 2.93 two weeks later on July 23; and 1.81 a month later Aug. 24. TT3 was slightly high July 23 (1.71 out of max 1.62), but insignificant according to endocrinologist. Free T4 was 0.77 on July 23 and 1.2 July 10. Thyroid Peroxidase (TPO) Ab negative at 0.5 and Antithyroglobulin (TG) Ab at 0. Historically, I was subclinical hyperthyroid in 2004 when I couldn't maintain a healthy weight and had slightly increased iodine uptake and two small lesions; 2009, suddenly gained 30 pounds and both thyroid lobes were enlarged and small nodes in both lobes with normal iodine uptake; now, both lobes normal size with three nodules in left lobe. My mom had a thyroidectomy for suspicious nodules and now takes thyroid hormone.

Gastroenterology: Upper GI endoscopy showed "Striped moderately erythematous mucosa without bleeding was found in the gastric antrum"; biopsy for H. pylori was negative, but I've been on Pantoprazole for years and research shows that can cause false negatives in H. pylori biopsy. My gallbladder was removed for gallstones in 2016 and they took my appendix out too because it was in the wrong place; CT of abdomen and pelvis shows a fat-containing incisional hernia at my umbilicus now. A biopsy of my liver at that time showed "The surrounding liver shows mixed inflammation of the portal tracts, which is mild to moderate, and contains neutrophils, eosinophils and lymphocytes, predominantly. Foamy histiocytes are also seen in association with the portal tract." Still not sure if that's potentially involved somehow. Imaging today shows a 4cm focal nodular hyperplasia, benign-appearing, but it can't tell you the pathology of the liver. My LD5, which is correlated with the liver and skeletal muscle, was elevated at 25% with range of 3-14% (LD1 was slightly low at 18% with range of 19-38%; LD2 was slightly low at 27% with range of 30-43%; LD3 was normal at 20% with range of 16-26%; LD4 was high normal at 11% with range of 3-12%). Alkaline phosphatase was slightly high at 134 (ref 38-126) in early July, but dropped to 93 on 7/26. ALT and AST have been normal, although AST was slightly higher than ALT at 28 to 26 on 6/25. Total bilirubin has been slightly low at 0.1 on 6/8 and 7/26. Celiac biopsy and blood panel were negative. I've been having some abnormal bowel stuff, and mom has ulcerative colitis, so now they want to do a colonoscopy. I also had a bad episode of abdominal pain last Friday, so am debating hernia repair surgery.

Infectious disease: Other than the Lyme mentioned above, only other weird thing was a randomly positive Quantiferon Gold TB blood test, but the chest X-ray and CT were both normal and I'm low risk, so my infectious disease specialist is thinking it was a false positive (just re-tested yesterday); I had negative TB tests in 2015 (skin) and 2011 (skin AND blood). Everything else has been negative – blood cultures, CMV, Epstein-Barr (showed pattern of past infection — last negative in 2007), Q fever, histoplasmosis, ehrlichia, baronella, tularemia, West Nile, Cryptococcus, hepatitis, ASO. Immunoglobulins and procalcitonin were in normal range.

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Rheumatology: She's considering seronegative Sjogren's Syndrome; my tear osmolarity was off the charts (right eye 357 and left eye less than or equal to 357 with range of 275-307; Schirmer's was 7mm in both eyes after five minutes, which is mild to moderate, but they're something about the way it's done can cause false high readings so they're retesting in two weeks after I've used eye drops daily. ANA panel and Sjogren's antibodies have been run twice, negative, and RF factor and CCpeptide were negative; early Sjogren's panel was all negative except for Carbonic Anhydrase VI (CA VI) IGG Antibodies, which were slightly positive at 22 (normal

If you have a positive Lyme this could explain everything. Did all of your symptoms start shortly after your hike in the woods? What Lyme test did they use? The gold standard comes from a lab in Germany.

Liked by Jamie Olson

@legallyred

@peabody88 this is an interesting post and at one time my doctors also had me convinced that it was all in my head (over three years) despite the continued progression of my symptoms. Could you share with us your symptoms and exclusions thus far?

The Mayo Clinic is touted as one of the best medical facilities in the world, however, I can tell you that they have their inefficiencies as well. After a couple years of pondering whether to go I finally submitted my application in May 2018 and I was accepted in less than a week. The following month we flew down from Canada and started my appointments with doctors. After the first appointment the lead doctor overseeing my file advised that she had to leave the country for a family emergency. I don’t understand why she did the initial consult if she already knew she was leaving. I was advised that another specialist would be taking over my file. Unfortunately, that person called in sick the next day and in the end no one was overseeing my file. There were several other mistakes as well and some of the worst came from the billing department. By the end of day three my husband lodged a complaint with the facility and we are still dealing with invoices that were double and triple billed. I’ve sought legal advice from an American attorney about the invoicing issues and his advice was to stop paying the invoices.

In the end, we wasted over $20k and we walked away no further ahead. My application was for hyperammonemia with unknown aetiology so they actually had something to go off of but rather than refer me to genetics, metabolic, etc. they literally did all the same tests that my doctors had previously run in Canada. I was never questioning the tests and procedures that were conducted back home but I realized that we put all our trust into these doctors and I truly thought they would use their best efforts to help me. Unfortunately, I feel like we were duped and we are not the kind of people that are easily pushed over, I’m a lawyer and my husband is an eye doctor. So in the end, would I recommend the Mayo to provide you with a diagnosis? NO, I would not, unless they provide you with a clear path of exactly what tests/procedures they plan to do and why. Unfortunately, if you ask for detailed information prior to seeing a doctor the response will be “you need to be seen by a doctor first”. Don’t waste your money and instead find yourself a new primary doctor that believes you and wants to help you find a solution. I did this upon returning home from Mayo and it’s made a world of difference and I finally have a doctor and a geneticist advocating on my behalf.

I hope this is helpful and if you want to reach out to me directly, feel free to do so.

Jump to this post

@legallyred, Thank you for posting and welcome to Mayo Clinic Connect. I'm so very sorry that you and your husband went home without the help you expected from Mayo upon arrival. Stories like this are hard to hear and I'm disheartened that your experience wasn't a good one but very glad to hear you found someone that is advocating on your behalf. That's wonderful to hear.
On the flip side, I just spoke with a patient who has had 14 surgeries at multiple facilities by qualified surgeons all ending with the same outcome- the patients issues were not resolved. They called to tell someone about their "life changing experience" that they had at Mayo- the surgeon they consulted with here at Mayo Clinic found something that the other 14 didn't. At the end of the day, I agree with your advice about taking the time to find a doctor that believes in you and wants to help you find a solution. Advocating for your own healthcare should be top priority for everyone. Keep looking for a doctor that fits your needs- you will find them, it just might be after the 3rd, 4th or 8th interview.

Also, to be safe, I edited your post to remove your personal email per community guidelines. Please, by all means, feel free to use the private messaging function on connect to communicate with other members.

@peabody88

Rheumatology: She's considering seronegative Sjogren's Syndrome; my tear osmolarity was off the charts (right eye 357 and left eye less than or equal to 357 with range of 275-307; Schirmer's was 7mm in both eyes after five minutes, which is mild to moderate, but they're something about the way it's done can cause false high readings so they're retesting in two weeks after I've used eye drops daily. ANA panel and Sjogren's antibodies have been run twice, negative, and RF factor and CCpeptide were negative; early Sjogren's panel was all negative except for Carbonic Anhydrase VI (CA VI) IGG Antibodies, which were slightly positive at 22 (normal

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(Ctd.) Rheumatology: She's considering seronegative Sjogren's Syndrome; my tear osmolarity was off the charts (right eye 357 and left eye >357 with range of 275-307; Schirmer's was 7mm in both eyes after five minutes, which is mild to moderate, but they're something about the way it's done can cause false high readings so they're retesting in two weeks after I've used eye drops daily. ANA panel and Sjogren's antibodies have been run twice, negative, and RF factor and CCpeptide were negative; early Sjogren's panel was all negative except for Carbonic Anhydrase VI (CA VI) IGG Antibodies, which were slightly positive at 22 (normal is less than 20). Complement C3 was normal at 160 (reference 83-193) on 7/2, then slightly elevated at 200 on 8/16. Complement C4 was normal both times at 37 and 40 (reference 15-57). Total tryptase was slightly elevated at 12 (max 11).

MRI of brain and spine was all normal except for mild disc bulging at C4-C5 and mild mid-cervical spondylosis. Other than the mentioned abnormalities above, like the liver lesion, linear gastropathy of stomach and umbilical hernia, the rest of the imaging was fine. The only thing left would be to re-do the CT or ultrasound of abdomen and pelvis, with a note not to focus on everything but the liver lesion, since that's was focused on last time; or a transvaginal ultrasound – it's just curious that two people doing the pelvic exam have felt absolutely confident there was poor borderline.

I don't know why I wrote this all out. I think I was hoping putting down the abnormalities something would jump out at me, or a pattern would be evident, but still nothing. I will forever question the thyroid I'm sure, since it seems to flip when I'm having some weird symptoms. I wonder about the liver inflammation from the biopsy in 2016 — if that could have been the result of the gallstones, or something else. I do find Lyme suspicious, since this all started with that rash and I've jumped from one positive band to three, but I've been on the treatment for it and while I feel like I see a temporary dip in temperature (max for the day was 99.4 one day), I don't know if that's actually causal or just the way it seems to cycle. I find Sjogren's Syndrome very compelling; I've been tested previously for autoimmune disorders because I seem to have constant health problems and a really poor immune response; I've had issues with dry eyes and dry mouth since I was a teenager and dry skin since I was a baby; it would explain the vaginal issues as well (your body can put out excess discharge trying to accommodate, the same way your eyes can tear/water without reason when you have dry eye, and you're at increased risk of yeast infection from the dryness); but I don't know how you differentiate between medication-caused dry eye/mouth and Sjogren's. Some type of mast cell activation disorder also intrigues me, as I've been plagued by lifelong allergies and sinus infections, and it can be associated with hypersensitivity to some medications (which maybe explains the seeming "trigger" of Sulfa). I'm convinced that some day they're going to diagnose me with a thyroid disorder — whether it eventually stabilizes, or they test for thyroid autoantibodies and find that it's fluctuating back and forth between hypo- and hyper-thyroid. I'm interested to see what the repeat TB test shows — if it's still positive, I would be more inclined to believe it's an extrapulmonary version (particularly urogenital) than latent TB since I had such a recent negative test. I suspect a combination of some of these things might be at fault rather than one thing explaining everything — for example, underlying Sjogren's made me more susceptible/high risk for catching TB, or I did have a skin infection or Lyme initially, and then the treatment triggered insane response due to a mast cell activation disorder.

And then of course, the one that scares me most — I don't think there's any doubt I started with some type of infection, since I had the elevated WBCs, but then the theory would be starting in July, I developed some kind of unconscious anxiety or obsession with being sick, and either by expecting symptoms, caused them, or am over-blowing or over-experiencing them from focusing on them. Maybe my temperature is naturally higher, or my thermometer is faulty. Maybe my CRP is naturally elevated (I haven't been able to find it was ever measured before, although I did find a normal ESR), or maybe it is high due to gingivitis or my birth control pills or being slightly overweight. Maybe that liver inflammation in the biopsy is due to non-alcoholic fatty liver disease and that's the cause of the elevated LD5, or it was just due to the gallstones at that time and if you did a biopsy today it would all be gone and the benign liver lesion is causing the elevated LD5. Some days I feel very confident it's not all in my head — that's a lot of maybes to make this psychological, and there's a lot of reasons I could refute them (I used two different thermometers, I read that my range of CRP typically indicates an underlying inflammatory issue regardless of other factors like birth control pills, etc). But there always seems to be that little devil on my shoulder, sometimes whispering/sometimes shouting, "but maybe…"

Kudos to you if you're still reading this. It reminds me of "You've Got Mail", when she says "I don't really want an answer; I just want to send this cosmic question out into the void."…Although if you have any answers, advice or observations, please, feel free!! Good night, void!

@legallyred

If you have a positive Lyme this could explain everything. Did all of your symptoms start shortly after your hike in the woods? What Lyme test did they use? The gold standard comes from a lab in Germany.

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@legallyred – Sorry, my posts kept getting cut off. Yes, everything did start about a week after my hike in the woods, which is definitely suspicious, but I've been on an extended treatment for Lyme (Doxycycline; two weeks initially in June, then four weeks in July, and another four started September) and while I feel like I see a temporary dip in temperature (max for the day was 99.4 one day), I don't know if that's actually causal or just the way my low-grade fevers seem to cycle. They've done the Western Blot twice now; first on 7/2 — a month after symptom onset — had one band positive (Lyme 45 Kd IgG), which on the one hand that's a very non-specific band, but on the other I had been on Doxycycline for two weeks almost immediately after symptom onset, and that can affect your result/ability to produce the antibodies. The second was on 8/24 — almost three months after onset and following two Doxy treatments (six weeks of Doxy total at that point) — and had three bands positive (Lyme 18 Kd IgG, Lyme 45 Kd IgG and Lyme 58 Kd IgG). It's still not the five bands the CDC requires, and while it is suspicious as perhaps the culprit behind my initial infection, by now starting my third Doxycycline treatment it should have resolved by now if that was the entire cause.

Liked by toomanyoars

Well, I have to admit I find myself completely baffled. I was so concerned about showing up and finding out it was "all in my head" (although I must admit I no longer am concerned about that after some more recent abnormal findings), but the possibility that Mayo might not accept me for an appointment never crossed my mind. I was initially told by the Infectious Disease department that they were referring me instead to Internal Medicine, so I completed their "survey/questionaire" and finally called them back when I didn't hear anything, just to be told that they were not accepting my case at this time. As I said, my abnormal test results haven't been like off-the-charts abnormal, but it's not as if I don't have ANY abnormal findings, plus two specialists (infectious disease and rheumatologist) sent in referrals. I just don't understand how I could not get an appointment; the infectious disease specialist was baffled as well (he thought maybe the potential Lyme component had turned them off). They said I could have the specialist(s) call in and speak to someone and maybe they would reconsider, which the infectious disease specialist is going to do, but I'm just very confused and disheartened. I was sure Mayo would have some kind of answer, even if it was just the dreaded "psychological" diagnosis, but to not receive any help at all never crossed my mind. Can anyone explain this? Did I do something wrong? Is there something else I should do? I sent in 100s of pages of medical records and two physician referrals. How can I get help?

@IndianaScott

Good day, @peabody88 Interesting post and something I believe is true … every person, at some time or another, has uttered the words 'is it all in my head?' I am Scott and my wife was a patient at Mayo all her adult lie as were several others of our family members. Based on our experiences I can say it is a great place with marvelous medical professionals at every turn!

To me, one of the best things about Mayo is they see the obscure, rare, difficult, and different basically all the time so if there is something they will most likely be the ones to diagnose it! Second, if you do get a full 'thump and tap' at Mayo and they say you are healthy, you can pretty much take that to the bank and know you are A-OK!

Sounds like it might be a good idea, especially since you say your anxiety is increasing.

Strength, courage, and peace!

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@peabody88 Don't feel that way you are not alone. Most of us seem that way with the medical system we have right now but l didn't know what was going on with me either and the doctors were also making me think it was in my head but l had to pray first then l went after them like l was in a war by myself and l was only defending myself, health and sanity because it's always you and your wrong. I have to say though l do have some wonderful doctors but it seems like when you have a good one and everything is going good he or she retires or moves. I have had so many doctors that they say on my chart she has seen many doctors with the same outcome especially one hospital and a majority of the doctors there because they are covering up because the mayo clinic found something and they didn't. So l highly recommend the mayo clinic since that where l went for a second opinion. And l had a doctor out there who also thought it was in my head because she didn't know the symptoms of the disease l have but after everything was done she had to say you were misdiagnosed. But they have a team of doctors and they listen. Their goal is to help the patient and to not make the patient feel like it's all in there head. I love it at the mayo clinic and wish l lived right in Minnesota. If l did l would save my insurance millions of dollars. But l am heading out there this Sunday finally after this year with my doctors. In my state we are rated a whooping 47 out of 50 in healthcare but l can say you will know something when you leave and that's always something good. I hope l have helped you. Good Luck

@techi

@peabody88 Don't feel that way you are not alone. Most of us seem that way with the medical system we have right now but l didn't know what was going on with me either and the doctors were also making me think it was in my head but l had to pray first then l went after them like l was in a war by myself and l was only defending myself, health and sanity because it's always you and your wrong. I have to say though l do have some wonderful doctors but it seems like when you have a good one and everything is going good he or she retires or moves. I have had so many doctors that they say on my chart she has seen many doctors with the same outcome especially one hospital and a majority of the doctors there because they are covering up because the mayo clinic found something and they didn't. So l highly recommend the mayo clinic since that where l went for a second opinion. And l had a doctor out there who also thought it was in my head because she didn't know the symptoms of the disease l have but after everything was done she had to say you were misdiagnosed. But they have a team of doctors and they listen. Their goal is to help the patient and to not make the patient feel like it's all in there head. I love it at the mayo clinic and wish l lived right in Minnesota. If l did l would save my insurance millions of dollars. But l am heading out there this Sunday finally after this year with my doctors. In my state we are rated a whooping 47 out of 50 in healthcare but l can say you will know something when you leave and that's always something good. I hope l have helped you. Good Luck

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Do you feel all Mayo campuses are similar? They all talk to each other on cases, right?

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