littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Hey all, lots of new names since I've been around last. So much going on.
Anyway, just saw my LLMD this week and she believes I may now have developed Sjogrens Syndrome. From the reading I've done it is common with other autoimmune disorders (Lupus, RA-which who knows, could be misdiagnosed Lyme).
All of the symptoms fit what has started or gotten worse over the last few months despite treating the Lyme.
I have Lyme and Bartonella for sure, past that who knows.
I am planning on getting the blood test done as soon as I can plus I need regular blood work done anyway.
But does anyone have experience with this? Obviously my LLMD would not recommend any steroids or anything else that would harm me for that matter. She wants me on more immune boosters and more anti-inflammatories (natural).
I've had Lyme for over 7 years and have NEVER had problems with my eyes or dry mouth.
The symptoms obviously overlap (Lyme, Bart, Sjogrens) but the ones that have been progressively getting worse or have been new over the last few months are those of Sjogrens.
Any advice, thoughts?
Prayers that everyone is doing ok (as good as we can).
posted
I have it. Was diagnosed in 2008 but the symptoms didn't get really bad until a few years ago. I don't take anything special for it as far as prescription meds. My body rejects more meds of any sort.
Over the past two years I've been using a product called ReMag and ReLyte and that has balanced my minerals to the extent that the Sjogren's symptoms are much better.
My eyes are the worst, but I just use Systane ointment in them at night and I'm good to go. I've also found that eliminating foods high in histamine has helped. I didn't know that those foods would dry out the eyes!
Even if you don't buy ReMag, be sure to supplement with magnesium glycinate or citrate.
PS.. I thought immune boosters would make auto-immune worse?
I hope you find what works for you. Beware the lip biopsy. I would not put myself through that. Nope.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I'm not sure about the immune boosters, may have misunderstood. My brain is crazy lately with lyme plus stress. I definitely trust my LLMD so I'm probably screwing that up!
I HATE, absolutely HATE putting anything near my eye. If I have to use eye drops I have to lay down with my hands under me so my husband can put it in, lol! This is not OK at all! My eyes have progressively getting more and more dry and painful.
And no no lip biopsy, she just wants me to get the ANA ( I think that's the one, I need like 5 different blood tests).
And this may sound stupid but the Remag I'm guessing is something I take right, not put in my eye...lol. I'll look it up!
Thanks for your advice. And really hope you're doing alright, it's been a while!
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
And I'll definitely have to google what you said about histamine in food because I don't have the slightest idea what foods that would be in.
Again, I really appreciate the ideas.
As I said I still need to get the test done but literally every single symptom that I've been complaining about as either being new or worse (joints) fit to a tee.
Hopefully I'll be able to get the blood work done next week, I can't get it done this week, it's going to be $200 total, ugh!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
That's what I meant to ask you, about the test. I've had an ANA test years ago and it was normal but again that was years ago. My doctor definitely treats based on symptoms like a good LLMD. Heck she was the first one to take my bartonella seriously because I test negative but have classic bart sx.
I hate getting near my eye, just shoot me lol!
And thank you so much for the website, I will check it out after I finish my math homework and give my poor eyeballs a break from this screen.
Again, thank you so much Lymetoo. I definitely didn't want to add yet another DX but your information will be very helpful!
I had contacts for 30 yrs, so putting things in my eyes got easy after awhile!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Lol Lymetoo, I told my husband he better still love me if I ever have to wear glasses because I would wear the glasses and never touch contacts! Haha!
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
My blood tests (ANA, and both Sjogrens specific tests) were negative despite many symptoms, so I had the lip biopsy, which was a HUGE mistake.
It took 6 painful weeks to heal and left a permanent pulling pain behind. The doctor did not do it correctly, and the pathologist did not read it correctly, which my Rheumy later said happens all the time, so it was a waste.
He says I have the sx, so he is treating as best he can, since I also do not tolerate drugs or synthetic supps. well. So far, all prescription drugs have been intolerable, but supps. and OTC meds okay.
I must use eye drops 2 x daily plus ear drops 1 x week, since the wax hardens now that there is no liquid, plus a Neti pot, and mouth spray, since I have two painful, enlarged salivary glands which no longer produce saliva, plus estrogen cream to keep my urethra from bleeding.....had to have a cystoscopy to prove I don't have bladder cancer (ouch!).
Worst is the neuropathy, which is by far the worst pain I've ever felt in my life and besides Fibro and Lyme, I have had the two most painful surgeries there are (abdominal hysterectomy and knee surgeries).
It makes my face, arms, legs and feet burn and freeze simultaneously, keeping me awake at night. It makes my stomach burn on the inside, my lungs fill with gunk, my blood pressure and pulse go up, and my vision blurs.
I feel hot all over despite goosebumps, and even my pee feels like it's been cooked, despite a below normal temp. I had burning for years, but never thought anything of it except that it was another Lyme thing I'd have to live with until this year when it got so much worse.
I take R-lipoic acid, benfotiamine, NAC, Methyl B12 sublingual and Methyl folate sublingual, plus Mg citrate 4 x daily, turmeric with piperine, L-glutamine powder, and lots of digestive enzymes.
The first two have been proven to help neuropathy.
I avoid B Complex, since my B6 was too high, which can cause nerve pain by itself. My B6 has been normal for 6 months though, and this just keeps getting worse.
I found animal fats and large meals make it worse. Movement is required for me to stop the burning. I exercise for 10 mins. after each meal and never sit in one place more than half an hour.
I sleep with my feet outside the covers and get up at night at least once to run cold water on them in the tub until they go numb enough for me to sleep again.
The moral: don't let an ENT doc tell you a swollen, non-functional salivary gland is "nothing". If a scan shows it's not cancer, my understanding now is there is not much else it can be but Sjogrens.
I put up with that lazy doctor for 15 years before getting a second opinion and now it has progressed to where I can't bear the pain. Night used to be the only time I felt decent and now even that has been taken from me.
Please be aggressive about getting the help you need.
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
Oh, klutzo.. that is awful. You are really suffering. So very sorry to hear.
You may want to try the ReMag .. it has been amazing for me. I have some amount of neuropathy that is WAY better now. I think it's due to the ReMag but could be other things I did.
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Lymetoo- I was curious have you gone into remission from lyme? I honestly can't remember because I've been gone for so long. My other question is have you (or anyone else who sees this) known someone to go into remission with lyme and co-s and still have sjogrens sx?
I'm asking because I asked on my FB page and most are just like treat the lyme and the sx will go away. While I do believe some diagnosis are lyme with us (RA, Lupus, CFS, etc) I also do believe we can develop other conditions because of the lyme.
Of course I'm going to continue (or start again I should say, I've been taking a break) treating my lyme and Bart but I don't think that guarantees or even lessons the chances these sx will go away with (hopeful) remission.
I'm going on Wednesday to get the blood work done but it takes 3-5 days to come back. My LLMD definitely treats based on sx and takes the blood tests with a grain of salt.
I still need to look up that Re-mag, completely spaced it when I made my cart at iherb but haven't ordered yet so if they have it I should be good to go. Is there a specific brand you recommend?
Also I have some questions about sx. Sometimes when I cough I cough up this stuff. It doesn't look like phlegm, instead it almost looks like gel. I can pull it apart but it's usually white or clear.
I've also noticed my peeing habits have changed. For instance it doesn't matter how much or what I drink during the day, it also doesn't matter how much I pee during the day, at night I'm woken up at least twice having to go so badly it's painful. Does anyone know what this could be attributed to?
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Kutzo...
I can relate to everything you are reporting...I also had the nonstop burning, hot/cold parasthesias, Sjogrens symptoms, etc., etc., etc., and a flare of burning pain every time I stopped moving. I never sat down for more than a few minutes for 8 years, and had to pace constantly. When I tried to lay down at night out of sheer exhaustion, it was like laying in a fire pit under a shower of sparks...and I would have to pace again.
Please, please read the mild hyperbaric thread...all 9 pages if you can:
I was not long for this planet at that time, but I am 100% well now, pain and med free. I never, ever though it would be possible. You can PM me if you like...there is hope...
Posts: 1888 | From Earth | Registered: Jul 2013
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posted
Littlebit .. I've been in remission for over 10 years. I do not feel I have trouble with Lyme or Co's.. I think I am just suffering from all that Lyme can do for us.
Treating with antibiotics at this point would probably land me in a hospital or worse. Not from a herx, but from what it would do to my gut.
I don't tolerate any herbs either due to a salicylate sensitivity.
As far as I know, ReMag is only available on this site:
www.rnareset.com .. There is actually one other place but that guy is a crook... so avoid him! I hope by now the other product has a different name. He tried to steal it from Dr Carolyn Dean.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I just looked up the ReMag and unfortunately I can't afford to spend that much (yes I know it's only $30) right now because of all the other supps and meds I have to buy (plus blood work).
Do you know if another type of magnesium supplement would be helpful? Iherb has some for 10 from NOW and I haven't had any problems with that brand. But I don't know how different they are.
Sorry for all the questions Lymetoo, again I really appreciate the help. I need to find something for my eyes, this burning is getting ridiculous.
posted
I know what you mean about the price, but it is one product I hope to NEVER be without. It is that good. PS... The first bottle will last you at least 2 months.
Try Trace Minerals Mega-Mag. I hear it doesn't taste very grand .. but ...
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Thank you. It's just with all these new supps, plus meds, plus blood work (just paid $168 for blood work), tax season (self-employed-we owe).... lol Not that you want to hear all my problems hahaha. Hopefully next month I'll be able to get the ReMag because I really trust your opinion!
posted
My cooworker has sorjens and all I know is that her eys always look red. She takes plaqunil for years which has helped her joint pain quite a bit. She has no known history of Lyme though. Not sure if that helps.
Posts: 82 | From New York | Registered: Aug 2012
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I know you know lymetoo this disease is not cheap!
And overwhelmed thank you, yes the redness was actually the reason I brought it up at my last LLMD appointment.
posted
True on the redness... The eyes really hurt when they are dry.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Yes they do... And I tried visine the first few times it happened and it didn't help the pain just made them water. And I should say my husband put the drops in my eyes, I didn't do anything lol
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