Random random disease taking over...ideas?

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myping
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Random random disease taking over...ideas?

Postby myping » Mon Jun 06, 2016 6:51 am

Hello all - just as a foreword to this lengthy post, just want to say this is not a call for diagnoses, just a hint or general direction I could search in - I have a fantastic team of doctors and other health professionals looking after me but they are a bit baffled. Thought since c.diff can cause all kinds of issues you guys might have some idea about some of the weird things happening to me.....here goes....
Two months ago I got a cold, which turned into bronchitis. That's all cleared up but other weird things started happening at the same time and haven't stopped. For instance, a weird purple colour creeping up my nail beds, vascular changes on my hands (prominent spider veins), now some of the fingers start to tingle, left sided chest pain, feeling cold all the time/chills, sometimes burning under the skin, dizziness, tiredness, heart palpitations. Now also nausea and terrible joint pains. Also low BP 110/70 (this is low for me).
Sometimes now my lips and tongue also look a little bit blue/purple, and the lips tingle.

I suspected an infection lingering or autoimmune disease or the former causing the latter even, but no bloods have shown anything abnormal.
Just for a bit of extra history, for those who don't know my story, I gave birth 5 months ago and had pneumonia at the time followed by c.diff from the prolonged antibiotic use. My lung dr says I have asthma now too from all that's happened.
Any ideas as to what is happening to me or what we could test for? Sorry for big rant but after five months I'd love to start getting my life back. Thanks in advance to anyone who reads/comments.

Ps: I'm 90 days post vanco! So far so good :)

amyc
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Re: Random random disease taking over...ideas?

Postby amyc » Mon Jun 06, 2016 11:06 am

Please order Dr Afrin's book Never Bet Against Occam, available on Amazon. You can start reading some of the research here on Dr Theoharides's site: http://www.mastcellmaster.com/publications.php. Dr. T's NeuroProtek supplement gave me a headache, so I am sticking with my antihistamines instead. Dr. Afrin's argument is that people don't suddenly develop a whole host of rare diseases all at one time, and all the symptoms you describe can be attributed to mast cells.

Mayo now has a mast cell disorder group in MN. Dr Afrin is a prominent hematologist at U of MN in Mineapolis. Dr. Castells leads a large group studying the condition at Harvard, and there is a mast cell guy at Stanford. My doctor is wonderful and is in OKC, and I found a name of a doctor in Austin because I am moving there soon. Dr Theoharides's is a MD/PhD at Tufts Med School. This isn't medical quackery.

I believe Dr Afrin's nurse will return calls and his group will respond to emails from primary care doctors. But order his book, just for the medical dictionary at the end. And the ability to look up symptoms in the index.

The good news is that mast cell disorders respond to treatment pretty dramatically, and as Dr Miner told me, this disease will drive you nuts, but it won't kill you.

Long article out of the group at Harvard:
https://thedysautonomiaproject.org/gi-s ... re-a-link/

I am not a doctor, and I won't play one on the Internet, but treatment for a mast cell disorder radically improved my life. I highly recommend Dr. Afrin's book, and you can find his contact info online to start a dialogue with his nurse if you are interested.

NanciT
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Re: Random random disease taking over...ideas?

Postby NanciT » Mon Jun 06, 2016 11:17 am

First I want to say 90 days Post Vanco!! Fantastic, so happy you have that behind you.

You mention a "team" of doctors and symptoms that probably should be evaluated by a rheumatologist. If you already have one....maybe a second opinion from another. There are MANY blood tests they do to check for autoimmune diseases so I imagine you have had them, if not you can research online. I do want to add sometimes its very difficult to know exactly what is going on especially with the various autoimmune illness there are. I am not saying this is what you have, it does sound like random symptoms and nothing specific. The BP would not concern me, ,monitor it, maybe it is a new normal for you. If you lost weight during CDIFF and can lower your BP.
I would check into another opinion (rheumatologist) and bring all your lab with you. Sometimes it takes a second opinion and new eyes to look at everything.
Hope you feel better soon, I know it can be frustrating when they cannot come up with an answer but so happy Vanco worked for you!!
NanciT

Ril
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Re: Random random disease taking over...ideas?

Postby Ril » Mon Jun 06, 2016 12:24 pm

I just want to echo a few things NanciT said.
Congrats on your 90 days of recovery from c diff.
Although we constantly stress that we don't give medical opinions, we do share experiences and from that the same things she said come to mind for me. Some posters in the past have developed autoimmune problems, which sometimes also look like some of your symptoms. You mentioned that you already have that in mind. You can use the search bar to look for some of those posts if you are interested.
I also think it is good to get a second opinion and would go the rheumalogist route.
Best of luck.
Rita

Lisa33
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Re: Random random disease taking over...ideas?

Postby Lisa33 » Mon Jun 06, 2016 2:25 pm

Congrats on the 90 days! Woo Hoo! So sorry you are going through all of these weird symptoms. I echo the others as well about seeing a rheumatologist.

amyc
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Re: Random random disease taking over...ideas?

Postby amyc » Mon Jun 06, 2016 2:37 pm


amyc
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Re: Random random disease taking over...ideas?

Postby amyc » Mon Jun 06, 2016 2:56 pm

http://www.ncbi.nlm.nih.gov/pubmed/26194403

Gut. 2016 Jan;65(1):155-68. doi: 10.1136/gutjnl-2015-309151. Epub 2015 Jul 20.
The role of mast cells in functional GI disorders.
Wouters MM1, Vicario M2, Santos J2.
Author information
1Translational Research Center for Gastrointestinal Disorders (TARGID), University Hospital Leuven, Leuven, Belgium.
2Neuro-immuno-gastroenterology Laboratory, Digestive Diseases Research Unit. Vall d'Hebron Institut de Recerca, Department of Gastroenterology, Hospital Universitari Vall d'Hebron & Facultat de Medicina, Universitat Autònoma de Barcelona, Barcelona, Spain Centro de Investigación Biomédica en Red de Enfermedades Hepáticas y Digestivas (CIBERehd), Barcelona, Spain.

Dr. Wouters appears to be in Belgium. I would guess he knows Dr Molderings, so I hope you can get in to see one of them.

getwellsoon
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Re: Random random disease taking over...ideas?

Postby getwellsoon » Tue Jun 07, 2016 6:39 am

Myping, Are you taking any other meds? I would investigate these also if you are. Hope you get some answers and feel better soon but at 90 days out I still felt pretty bad. Its a long haul for a lot of people.
CAROL

myping
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Re: Random random disease taking over...ideas?

Postby myping » Tue Jun 07, 2016 8:09 am

Thanks all for replying!!! Perhaps I was silly to think once I got the cdiff under control things would be "back to normal"!
Now I wonder what that even means :)
Also thanks for the congrats - my massive dose probiotic strategy seems to have gone well and I'm reducing them slowly now! Yay for less pills.

Wow amyc, Thankyou for all that fantastic information about MCAD, something I'd honestly never heard of until you mentioned it! I've also never heard of that dr but might be an option if I don't get any results with Drs here. Leuven isn't that far but with two small children the organisation gets a bit mental :)

getwellsoon - I don't take any meds besides Chinese herbs, and I've been switching them around with my practitioner to no effect. Don't think it's them. My two sons who were sick at the same time as me also have the purple colour slowly creeping up the nailbeds, which is why I suspected something triggered by infection. They're a bit too small to tell me if they're feeling the other things though :)

Looks like I'm back on the doctor roller coaster merry-go-round again. Rheumatologist it is. Can't help but think cdiff just wrecks the immune system. I'll do what you suggest Ril and read up on others' experiences. FMT might still be on the cards.

amyc
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Re: Random random disease taking over...ideas?

Postby amyc » Tue Jun 07, 2016 12:14 pm

Are you giving your sons the same herbal remedy you are taking? I would advise stopping anything you are all taking to see if that helps. Purple nail beds in all 3 of you sounds very odd, and I would suspect you guys just can't tolerate a medication.

roy
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Re: Random random disease taking over...ideas?

Postby roy » Tue Jun 07, 2016 2:35 pm

One symptom of carbon monoxide poisoning is purple nails.
There's lots of other reasons for it but if 3 people in the same house suffer the same unusual symptoms you should not ignore it and hope it gets better.

amyc
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Re: Random random disease taking over...ideas?

Postby amyc » Tue Jun 07, 2016 4:38 pm

Roy, wow, excellent that you know that. CO poisoning also causes headaches, dizziness, could certainly cause cardiac and respiratory changes too. Did you PM the OP? Or do you want me to do so?

roy
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Re: Random random disease taking over...ideas?

Postby roy » Tue Jun 07, 2016 5:23 pm

PM if you think it will help.
Hopefully the poster reads her thread.

Reason I know this is because when I gave up smoking I used to go to the Dr once a week for a breath test that detected if I was still smoking!
Remember anti smoking meds here (UK) are free if you prove your doing your part.
About 10 of us attended the same session's.
One of the other people insisted she was not smoking at all but her breath test said she was and she had the purple nails, cough etc of a 40 a day smoker as well as a high co2 breath test.
It turned out her heating boiler was poisoning the whole family!

myping
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Re: Random random disease taking over...ideas?

Postby myping » Thu Jun 09, 2016 2:36 am

Hi, I am reading the thread!
Amyc we don't take the same herbs.
Roy thanks for the clue, CO is very scary - actually I am not the only person in the building who has been sick so perhaps the central heating??? Not that we're using it at all now. CO would explain why I go purple but pulse oximetry is normal. I'll get my blood levels of CO checked asap.
Last year we had a problem with the hot water heater but I promptly had that fixed. Maybe it's time for another service.

Bobbie
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Re: Random random disease taking over...

Postby Bobbie » Sun Jun 12, 2016 8:56 pm

Roy,congrats on quitting smoking. What helped you? My younger son is an asthnatic who smokes,


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