1. < Autoimmune Diseases

Figuring out autoimmune disease where to start?

Posted by cberner85 @cberner85, Jan 20 1:29pm

I have struggled with whole body inflammation that gets triggered by emotional or environmental stress. Muscle weakness and overall fatigue. Mental stress also worsens and chronic migraines with this. Have seen neurology but where’s a better place to start to cope so I can get back to daily activities? Not looking just for medication but root cause as well. Family and friends also don’t always believe I have anything going on. I have tried numerous modalities natural and medical including also seeing hormone specialist. Any ideas or anyone else have success with solving this?

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cberner85 | @cberner85 | Jan 22 10:04am
In reply to @jeggy "Hi If I knew your full diet I could suggest a few things and I mean..." + (show)
@jeggy

Hi
If I knew your full diet I could suggest a few things and I mean drinks as well list it all please , also are you on any meds ?

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Appreciate this. I know my diet needs an overhaul and am working with someone on that part. No meds currently. Reading most of these responses, I feel horrible for everyone going through these things and I might give it a little while and see if my issue resolves with improved diet and once I get off doxycycline (almost done). I meant no additional meds:). I’ve done elimination diet and all the typical things recommended.

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2 replies
cberner85 | @cberner85 | Jan 22 10:05am
In reply to @tuckerp "I think a rheumatologist can help. Here were the tests they ran on me. Most of..." + (show)
@tuckerp

I think a rheumatologist can help. Here were the tests they ran on me. Most of these rule out something else.
1.. CBC with DIFF
2. ESR
3. CRP, HS-CRP **
4. HBsAG
5. Interferon Gamma, Serum
6. Hep -B
7. Anti-Chromatin Ab, IgC (RDL)
8. CCP Antibodies IgG/IgA
9. 14-3-3 eta Protein
10. Antiphospholipid Antibody APS, APLS
11.RF test
12. ANA - antinuclear antibody
13. Aldolase - With CK, ALT, AST
14. Interleukin 2 and 6
15. Pet Scan for cancer.

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Wow that’s a lot of tests! I will keep in mind what to look for. Thank you for the information!

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Denise | @denisestlouie | Jan 22 12:00pm
In reply to @cberner85 "Thank you! I started with functional medicine, chiropractic, herbalist but have been thinking about looking into..." + (show)
@cberner85

Thank you! I started with functional medicine, chiropractic, herbalist but have been thinking about looking into a doctor/functional medicine who specializes in latent diseases. I’ve had Lymes mentioned before, which from what I read can look like PMR. I grew up on a farm, hunting etc and did have one event I can remember where I believe a tick bite got missed by a doctor. Didn’t present real typical. I do have the left side weakness and some other things that line up for this.
It would be chronic long term at this point. All this too started happening after a miscarriage 2 years ago and after having Covid at 7 weeks postpartum. Hence all the hormone stuff. I have quite the long long story of every practitioner under the sun…the one thing that has helped at all is a magnesium infusion.
Curious of anyone you’d recommend that is also knowledgeable on Lymes this way and PMR if that’s likely the diagnosis?

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I don't know much about Lyme disease but the holistic doctor I see talks about Lyme disease as a condition he can treat

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jeggy | @jeggy | Jan 22 5:51pm
In reply to @cberner85 "Appreciate this. I know my diet needs an overhaul and am working with someone on that..." + (show)
@cberner85

Appreciate this. I know my diet needs an overhaul and am working with someone on that part. No meds currently. Reading most of these responses, I feel horrible for everyone going through these things and I might give it a little while and see if my issue resolves with improved diet and once I get off doxycycline (almost done). I meant no additional meds:). I’ve done elimination diet and all the typical things recommended.

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I hope you work things out. One thing to look into which has helped me enormously and changed my health and life for the better was to avoid High Histamine food and drinks, I can not have Dairy sadly and I have just gone gluten free as I want to take that out of my diet a choice thing.
I do not drink Tea or Coffee or soft drinks, Alcohol, my main drink is water or a Herbal Tea and when I go out I will have an Almond milk Hot chocolate that contains no Lactose in it. I eat a lot of Fruit and veg, Tuna, Mackeral, white meat, Pork, but Red meat triggers me so I have it on the odd occasion, I keep my Meat portions small. I have to watch certain Protein's as they can be triggers. I am ok with nuts and seed proteins. I recommend looking up Histamine Intolerance not many people have heard of it but it is starting to get out there. Good luck and I hope you get there.

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say7418 | @say7418 | Jan 24 10:08pm
In reply to @tuckerp "Your primary can take you part way. Order the ESR and Sed rate. But as jeff..." + (show)
@tuckerp

Your primary can take you part way. Order the ESR and Sed rate. But as jeff mentioned its going to be very hard to get a diagnosis at your age. I am on 2 different PMR sites and even though the medical field likes to call it a plus 50 disease it is not limited to plus 50. Many younger people have it.

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Maybe the ANA test titers will reveal an autoimmune disease that they can diagnose and treat. I see everyone saying PMR, but maybe it’s something else too.

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jeggy | @jeggy | Jan 27 1:32pm
In reply to @cberner85 "Appreciate this. I know my diet needs an overhaul and am working with someone on that..." + (show)
@cberner85

Appreciate this. I know my diet needs an overhaul and am working with someone on that part. No meds currently. Reading most of these responses, I feel horrible for everyone going through these things and I might give it a little while and see if my issue resolves with improved diet and once I get off doxycycline (almost done). I meant no additional meds:). I’ve done elimination diet and all the typical things recommended.

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I hope you find your answer. Take care

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hara1 | @hara1 | Jan 27 7:44pm
In reply to @tuckerp "did they test you for PMR." + (show)
@tuckerp

did they test you for PMR.

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What is PMR please thx much. 🫶

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1 reply
hara1 | @hara1 | Jan 27 7:59pm
In reply to @docrea "PMR new drugs to treat" + (show)
@docrea

PMR new drugs to treat

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Hi. Can you let me know if you know which are the new drugs?
please, thx much. Cause drs told me I have Auto Immune Hemolitic Anemia. And I do blood tests every week. If my Hemagloben is less then 80 I need blood transfusion. If it’s higher then 80 the dr gave me Prednisone but it was killing me. Like I could not walk and got high Diabitus like 30 and was admitted to emergency room and was there did over a week until they got my Diabitus under control. And had to be lowering the Prednisone slowly to whin me of it. But I still go for blood tests every week. And Hemagloben went to 110 stil low bu no transfusion.

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