Find a better doc, preferably a Functional Med Doc (www.functionalmedicine.org). I have lupus and fibro, (& celiacs), and what you describe sounds alot like one or both of these. Getting the right functional medicine doc on your side will be the beginning of your healing and getting your life back. Feel free to PM me if you want more specifics on testing to ask for, and solutions that have worked for me, but seriously find another doc, a functional med doc.
Where do you find one of these? And I wonder if my insurance Medicaid) will cover?
You can find one on the website I posted above, there is a Find A Practitioner button on the main page. My functional med doc is an MD and does take Medicaid patients. Itās up to the individual doc to decide.
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I have many of the same symptom and everything you guys have suggested has been ruled out include multiple MIās i, CTās many specialists.
Am I desperate ,yes and I continue to deteriorate so that now its difficult to have the energy to walk even on the flat.
You never want to be a medical mystery and probably donāt realize that maybe 50% of people get real ill and never diagnosed. I havenāt felt well for yrs but now its so bad I had to retire and last time I tried to ride my legs barely held me up when I got off. Iāve been fighting this for a long time by toughing it out yet stupidly never imagined it would get this bad.
Doctors have tried but the fact is our bodies are so complicated and if we donāt have cancer ,heart, lung.kidney or liver disease and nothing shows up on lab work then you are just left alone with the mystery.
Also it is not Chronic Fatigue syndrome or any of the common rheumatological diseases. I even had some genetic testing.
FYI its āonlyā $2500 now to have your whole exome tested by a medical lab but need physician referral. Invitae is the lab.
Anyway thats my sad story and I just canāt face not big able to ride. My horses are at my house and I have to have help now to care for them
Iāve tried everything and then in searching realize there are a million americans in the same boat. You never want to be in this boat.
One suggestions for OP is to have capsule endoscopy, had a horse friend who was not anemic and fecal test were normal but capsule showed she was full of roundworms. The only way to look at your small intestine (your largest intestine) is with the capsule endo and never rely on fecals.
@walkers60 - I am so sorry to hear about what is happening to you. It is absolutely zero fun to suddenly have your life as you know it snatched away. I havenāt gotten where you are and pray I donāt. And you are right - if it does not fall within the parameters of āwhat is knownā then you kind of get tossed under the bus or shunted aside in favor of āwhat we do know.ā I am watching a show called āSomething is Killing Meā and that will scare the pants off you. The last show said the CDC recognizes 7000 diseases but there are only ācuresā for around 400 of them. That was an eye-opener.
Wow, this post was really helpful! I came here to see how common it was for fellow equestrians to be diagnosed with parasites but saw the OPās thread and decided to read because Iām going through the same thing, with no answers yet. Iāve seen a Rheumatologist, gynecologist and cardiologist so far. Positive ANA and histone antibody but a wait a see approach in 6 months. Iām 32 and thin but my ejection fraction (how much heart pumps out) is 45.4% which is lower than my diabetic, 71 y/o dad who had a quadruple bypass 2 years ago! I have a sinus tachycardia arrhythmia and my holter
monitor showed a heart rate of 181 on a trail ride! But they have no idea whyā¦ ājust cut down on caffeineā. Ugh! Itās like pulling teeth to even get them to run more tests!
Next up is the gastroenterologist in 10 days. Definitely going to ask about the camera pill!
OP: the only additional advice I can give is get copies of every single test done in the last few years (even before you got sick if you can so that you can see whatās changed). Get copies of any and ALL imaging done put on a CD in addition to the radiologist reports.
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I second getting copies of all imaging on CD/DVDs. If you do that at time the image study is done, there is usually no charge. Just be aware that the software to read the images is loaded on the actual CD/DVD (since different imaging places may use different software to read the images) and the software is Windows only 
If you are Mac-only user, you may be SOL actually reading the images. You can copy them to give to some other healthcare provider but canāt actual read them. I have a Win laptop that at the moment is used only to read imaging stuffā¦ :rolleyes:
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@WhereāsMyWhite - yeah Iām familiar with the imaging to cd thing. I used to burn all the cds for the ER. I actually have my ankle pre- and post-surgery. Amusing in a gruesome kind of way. I bet I could use my connections that I still have to get all my other stuff. Esp interested in the recent thyroid study.
My appt is on 9/5 and I am going armed. She better plan on spending some quality time with moi.
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Oh good, tomorrow then. Fingers crossed!
Have you been checked for Fibromyalgia? I have it, along with Chronic Fatigue syndrome. These combined with too much stress, caffiene, etc, make me feel the way you do. Iāve been dealing with the same type of issues lately due to just too much going on in my life right now. My daughter, in her 20ās, has had a lot of the same symptoms. Check the side effects of your meds. I was on a medication that caused horrible night sweats. It was rare, but did happen so some people. Good luck, I feel for you currently dealing with a lot of the same issues.
@SLedbetter - what med were you on that caused the night sweats? (If you donāt mind me asking.) Because Iām starting to wonder about that as well as all the other stuff.
My understanding of Fibro and CFS is that theyāre both general catch-all terms for people who experience chronic fatigue and chronic pain. Before I realized that I was hypermobile and probably had a hypermobility syndrome disorder (maybe even EDS, though the wait list of genetic screening for that is outrageous - multiple years!), everyone thought that maybe I had Fibro. My doc, who I love to pieces, was reluctant to give me that diagnosis, though, because she didnāt want it to be on my chart for fear that future doctors or specialists would look at it and not take me seriously. Fibro apparently has a reputation as being an in-your-head disorder, which doctors giving it to patients with no real discernible causes for their pain. That was me for the longest time, until I realized that my ankles were literally subluxing as I ran, and I dislocated my hip during a martial arts test and then relocated it on my own. Iāve been to the rheumatologist once already where they ruled out all of the autoimmune disorders, and now Iām armed with that and about two years of medical history to go to another rheumy at the end of the month and try to get a hypermobility diagnosis. Though, re: fribro, Iāve seen some recent studies that indicate that we are able to locate a gene for it now, so there is that.
So got back from doctor visit and have a referral to an endocrinologist they are working and a boatload of blood tests to get done. I ran everything past her - she did not want to read all my info then but took it and said she would look at it later.
Now - she is floating fibromyalgia past me. Told me that I tested positive for Epstein-Barr (no-one told me that!!! :mad:) and that my mono titers were elevated. She gave me the ultrasound results and there in black and white is the note that there is a cyst on one side of my thyroid. She did not think it was affecting me, though. Also showed her some strange growths I have found on my skin (6 at least) that look like weird moles and she said I would get a referral to a dermatologist. Then she said she didnāt like the way they looked and left it hanging. I just looked at her and said āAND?ā She mumbled something about possible skin cancers (WTF!!!) and said the derm guy would confirm and she would give me a referral to he hospital general surgeon. SO - I have been handed a lot. Just what I need! MORE sh*t to worry about. oh yay meā¦grrrrrr
Iām really still trying to process this and donāt know whether to be mad or relieved or what. I need a drink - if I drank.
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I hear you on frustrations with medical diagnoses! Sometimes doctors frustrate me so, so much, with giving me the run-around and not being absolutely transparent with whatās going on. A good PCP is such an important part of a care plan, and it seems like they are few and far in between :c
My experience is doctors/medical professionals rarely want to hear what youāve looked up on the internet or researched yourself. Thereās that meme that goes around from time to time - āDonāt confuse your thirty minutes of Googling with my medical degree.ā But the rebuttal to that is, āDonāt confuse your medical degree with my x-amount of years living with this.ā
But hey, now you know about EBD, and you have an action plan to address the growths, and you are aware of the cyst in your thyroid and can actually do something about that (slowly, but surely - the wait always sucks). Thatās loads better than when you DIDNāT know.
I think you have a right to be mad, though - apparently you had a virus that nobody told you about, thatās known to cause fatigue issues (and actually I believe a lot of Chronic Fatigue Syndrome diagnoses are a result of this?) as well as viral Lymphoma. Thatās a big deal, and you should have been informed.
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A friend had a nodule on her thyroidāthey removed it and she was much better, had more energy. They also supplemented the surgery with certain vitamins (Iām not sure which ones).
I almost posted this earlier, but realized that you had worse symptoms than she.
Good luck! At least you seem to be on the right yellow-brick-road.
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OP, glad you have gotten some additional information and more steps to work on to identify your issues.
Donāt know how you feel about your relationship with your PCP but for me, based on what youāve said about the wishy-washy answers, I might be thinking about finding a different PCP. I have used DOs for many years and have liked them as, IMO only 
, they tend to take a more holistic, whole body view. They are Drs, just different path to practice medicine. Both my PCP and GI docs are DOs.
See the dermatologist. Get an affirmative diagnosis on the āweird molesā. There are many different types of skin cancer, some worse than others. Donāt freak out until necessary but please be timely
Glad also you are going to see an endocrinologist. A good step. Perhaps also discuss with endo if a rheumatologist is called for. As with any doc, if you donāt like the endo you see, find another one. I went through 3 orthopedic surgeons before I found one I liked and was comfortable with. Went to an endo for two issues, resolved one and he proceeded to change all my diabetic meds even though I was in good control. Kicked him to the curb and went back to my PCP.
As many have said, yeah, the docs have the training and the experience but you live in your body. If you donāt feel there is a connection with the doc, find another one.
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Another thing that occurred with my friend seeking surgery for her thyroid node was that she asked the Dr how many of these surgeries they had they done. The first Drās response was a dozen. She then found one who had done hundreds and his only job in the practice was this particular surgery.
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Oh man first nothing, now everything.
But seriously the cyst on your thyroid I would think would be first and foremost. Fingers crossed
Deep breath. At least you got some things to work with. IS this your regular doc?
I swear they all hate when we become involved in our care and diagnosis and treatment.
Takes that God like factor away from them.
I am hoping you get some solid answers Shiloh.
I mean I have colon Cancer, but at least it was diagnosed. not well, gee it might be this, or that.
Keep us posted! Kim
TOTALLY agree on the DOs. No doubt there are crappy ones out there, but on the whole Iāve also found them more willing to look at you as an entire person instead of body parts.
Iām reading this book called Arousedā¦itās about the history of endocrinology and how hormones work, and itās a cool read. But whatās MOST startling to me his just how NEW the entire field of endocrinology is. Weāve only even KNOWN about this stuff for about a hundred years or less. Thereās still so much we donāt know, and docs sure arenāt willing to admit that :no:
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Iām still processing. I guess Iām more mad that no-one thought to tell me that I had tested positive for a known fatigue causing disease and that other doc blew off cyst on thyroid. Both she and this PA I am dealing with agree that it probably isnāt causing problems but my response now is āoh? Really? Is that how I wound up on thyroid meds? Out of the blue?ā grrr
I donāt need this right now. I already have a crap cake thankyewverramuch and do not need it to be frosted.
