RA with a side of lymes and something else?...

[zbratianu]

Hi all, so I've been told for years now I have RA. I've gone through the treatment steps up to three biological hay I have FAILED in the words of my doc. Although I feel they failed me... but that's the power of semantics. I've been requesting imaging for years on my larger joints and now they reported spurring in my c6-6 and iflamation in my si. Although my rheum said nothing about the presence of a cyst or bone erosion that it said on my lab right up( why I always request copies. So now what? Do I have RA? Is this just that? She listed a long line of other diseases that it could be; but no diagnosis. And I also have three coinfecrions that they missed which left me to die almost from meningitis. Wow, yep now we'll treat you for lymes; but that means no more RA meds. Ugh. My hands hurt. They never swell too much by ppl who know me can see them. My ankles look sprained and I can't barely get out of bed. The only thing riding my horse is on of my chickens. Seriously; it was hilarious. Anyway, had anyone else experienced this... and they still don't think I should require the pain meds my precious rheum had prescribed. Wtf. And what do I do?? I'm going for injections on the si joint and new MRI of cervicle spine to check that out because she says it's just osteoarthritis. I'm 33.... but ok. Sure.

Sorry for the grump message. But sick of feeling like a junky for wanting to live my life. It's been three years. I've never upped my dosage and went med free for one year to breastfeed. I'm a committed mother. And that takes some level of physical mobility. Not to mention I keep getting denied for social security. Any good advice would be greatly appreciated.

Zoë

Anyone one else suffers from shhhhh...chronic lymes? Yes I said it. CHRONIC F*ing lymes.

[Ktltel]

Zoe,

Girl, you are so young to be dealing with all of this. How in the world have you kept your sense of humor, I don't know.

Where do you live? The reason I ask is because everything you said just sounds like they don't have a definitive answer as to what you have for certain. It sounds like several things going on.

Here in the U.S. there is The Ultra Wellness Center that has 2 locations. One I believe is on the East Coast and the other in Ohio. Both facilities have cutting edge Functional Medicine doctors who are determined to get to the root of your problems rather than slapping on meds to placate symptoms although they will certainly address your pain in the meantime too.

Give them a call. I've heard after a first initial visit, you can thereafter fax them labs they request and have Skype visits instead of physically traveling there.

It's just a thought and another option for you.

Take care,

Stella

Dx PBC 10/16

Dx RA 4/17

[Kai--]

Supplementally:

🤔 This search of HU (HealthUnlocked) forums for "Lyme" may yield some useful ideas: healthunlocked.com/search/lyme

🤔 This 'Pain Concern' forum may provide some pain management ideas as well: healthunlocked.com/painconcern

🤔 Young mother Jenn (scroll downward to view 'Meet Jenn' video healthunlocked.com/cure-art... ) & older mother Dr. Monica Aggarwal ( healthunlocked.com/nras/pos... ) may have some useful ideas for you too.

Very best wishes for speedy relief, zbratianu/ Zoë. 🙏 🍀 🌺 🌞

.

👍 2nd Ktltel/ Stella's Ultra Wellness Center recommendation: ultrawellnesscenter.com/cur... ☺️

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[Gloria814]

I am so sorry to read all that you are dealing with now. You must have had some reason why they put you on biologics--previous xrays or mri indicate RA? You are right--the drugs failed to work for you the way they should.

tests must have indicated lyme disease--it can cause many problems thruout the body. Dont think the spine issue but I don't know. I hope you can find a doc you trust and that listens to you

Try applying for soc sec disability again. Some people get lawyers to help them and many are denied the first or 2nd time so I would press on and try again

Wish I had more to add. I am new to RA--well about a yr and a half. On Cimzia biologic now for just about 3 months. Tolerating thus far. Hopefully your lyme disease was diagnosed correctly and that you get proper antibiotic treatment. Keep us informed on how you are doing. I hope your health improves!

The comment about the chicken on the horse was very funny.

[zbratianu in reply to Gloria814]

Hello, yes the chicken riding my off track TB was really funny. I had a rheumatoid factor <6,000 so that was a rip off. I went in to be tested for lymes but they didn't agree tear was negative but that's when the RF got me to rheumatology. First doc said probably RA. No significant swelling. But it was visible to me. She was unconcerned and I was BF my baby so wasn't going to take anything. Then I found my old doctor who was concerned about the osteopenia found in my hands and feet and high RF. She didn't care about the lack of major swelling or labs as they're not always accurate per individual. Said it's not always visible for damage to occur.

Anyway, that's how I started taking meds. Then she retired and the man whom replaced her said he didn't think I had anything maybe fibro.

Onto next doc; says beloved RA. Now she says some type of inflammatory arthritis and something like RA. Lol. Yep. Something like... wow

So then I get sick. ER sick and demand another lymes test; that comes back positive. Specialist I then see says I've had it for years and have two other coinfections

Idk

But that's the story

[Barbgalvin in reply to zbratianu]

The problem lies with the Lymes testing, there is no accurate testing from a "regular" physician. One would need to go to a Lymes spefic Dr. and pay out of pocket for EVERYTHING,treatment and initial testing. But, chronic Lymes is very real, have had it for years. Of course with an RA diagnosis and fibro.

[zbratianu in reply to Barbgalvin]

Yes the out of pocket is where I ran into a wall. But they are confident that's what it is and willing to treat. I just cannot afford the treatment. Did your RA go away after treating the lymes or is it an on going process.

[Barbgalvin in reply to zbratianu]

I went to the Lyme's Dr. Took antibiotics for 10 months after I tested positive through the IGenix lab, Dr. Wanted to treat more aggressively, I could not handle the side effects of the meds. But, while being Treated for Lyme's,all RS symptoms diminished, when I stopped eventually they came back.

Chronic... Still hurts still see RA Dr.

[Gloria814]

Do you live in the US since you mention soc security? There are 2 specific blood tests for lyme. If the first one is positive then they do the 2nd which perhaps is more accurate

I have inflammatory arthritis. My Rheum. told me that if RF in blood is neg. then it is called inflamm. arth. I did a 'google' search and you can have symptoms of meningitis with lyme and also osteopenia can develop with lyme. You prob have the arthritis and lyme but that would be for Md to confirm. Re. my inflamm arth, I also have no swelling and almost every single lab test comes back neg for RA so the diagnosis was made after xrays and MRI showed joint erosions and of course my pain was a factor in the diagnosis. So I hope you see a good specialist. Chronic lyme is treatable but you need the right antibiotics. Seems like they have not been great with accurate diagnosis for you but some of the diseases overlap ea other and can be difficult to obtain accurate diagnosis initially Good Luck!!

[zbratianu in reply to Gloria814]

I'm not sure why my rheumy is calling it inflammatory arthritis while I have a positive RF factor. ? Sillies.