posted
I have been and am currently being treated for chronic Lyme/Babesiosis since April of this year, unfortunately with little relief of symptoms. Because during these three months my dry eye/mouth symptoms severely worsened, I decided to see a rheumathologist and was diagnosed with Sjogren's. My dilemma is that my LLMD told me that my Sjogren's was caused by my Lyme and would go away when the Lyme was sufficiently treated and pleaded with me to stay away from any immunusuppressive drug. My rheumathologist told me I don't have Lyme because of now negative blood tests (only Band 23 showed, as always) and advised stopping treatment and starting on an immunusupressive drug to slow down my Sjogren's. I'm confused and afraid. What if my LLMD is wrong and my Sjogren's progresses. What if my Rheumathologist is wrong and my Lyme/Babesiosis goes wild and causes more damage? Anyone here have Sjogren's due to Lyme and can share about it? Any words of wisdom regarding any of this would truly be welcomed.
-------------------- ~M Posts: 20 | From Flander, New Jersey | Registered: Jul 2010
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Do you recall being bitten by a tick? Did you have a rash - bullseye? (Some people don't get bullseye rashes and some people never get a rash at all, but still get lyme.)
Anyway, if you had the famous bullseye rash, then you definitly have lyme. But you can have it even without a rash.
I really don't know anything about how to interpret Western Blot, but my guess is that the Rheumy doesn't either.
I would put more faith in the LLMD.
It takes time to see results, especially if you have been sick a long time.
Also, having both Lyme and Babesiosis means that your case is more complicated and will take a longer time to overcome.
I think you are giving up too soon.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
I had a rash and positive blood tests for both Lyme and Babesiosis 3 years ago, as well as for only Lyme 10 years ago. I was treated 3 yars ago for only two and a half months and told I was cured. Since then, I have had on and off what I called my "bouts of weakness" that lasted for days or weeks, with "remission" in between, consisting of, just to name a few symtoms bone-crusing fatigue, rashes, numbness/tingling, fevers, body aches, brain fog, blurred vision, tremors - you name it - along with a dry eye diagnosis. It got so bad this past January after a bout with the flu that I had to take a hiatis from my passion and sport of competitive road cycling and have not been able to ride even at a casual level since. There also has been no "remssion." I HATE taking all of these antibiotics and mepron and even my vitamins and probiodics. They make me nauseaus 24/7, my stomach hurts, and I have zero appetite. You are right. I was, maybe am, giving up, hoping that Sjogren's is the answer and I can stop all this medication. I guess that's silly because I would be trading the antibiotics for even crazier medication. I think the one symptom that I want gone YESTERDAY is the fatigue. I want to get back on my bike. I am fustrated that I don't have the energy to ride. I feel like my life is passing me by. I'm sad and discouraged and am giving up hope. How to you and everyone else stay focused, determined and positive...and stong? This is so hard.
-------------------- ~M Posts: 20 | From Flander, New Jersey | Registered: Jul 2010
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posted
For me, the number one symptom for babesia was the crushing fatigue. I don't think that is a hallmark of Sjogren's.
I think you really should not give up on the babesia treatment until you feel well! Just make sure you have a really experienced doctor. You need one who knows how to treat this as it can be a hard one to get rid of.
Here is a link with many links. You may want to look at what Dr Burrascano has to say about Lyme and babesia treatment.
posted
Thanks for all the info, which I have read countless time and, therefore, should know better. I know you all are right about keeping up with my treatment. Was just having a huge Pity Party yesterday.
I do have a very experienced LLMD, who by no means, wants me to stop treatment. She does believe that the Babesia are the cause of most of my symptoms, moreso than the Lyme.
Guess I have to start trusting my LLMD.
-------------------- ~M Posts: 20 | From Flander, New Jersey | Registered: Jul 2010
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Idk. I see tons of rheumatoid arthritis people on twitter who have lyme, they go mainstream and just get loaded up with steroids and they seem more functional than most of us.
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
With the infections we all have, I would never take immunosuppressants. Health can never be truly regained going this route.
Just about all of us have autoimmunity. I believe wholeheartedly in my smart LLMDs who tell us that once infections are eradicated autoimmunity disappears. I've personally seen improvements in myself.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Have you thought of stopping antibiotics for awhile and trying the lyme culture test?
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
I have thought about it, but my LLMD advises against it, not wanting to give the spirochetes and parasites a chance to further multiply and invade.
-------------------- ~M Posts: 20 | From Flander, New Jersey | Registered: Jul 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Don't go the steroid route!! That will make the infections run wild and be next to impossible to treat after that. Burrascano called it "Steroid Disaster" for good reason.
Yeah, maybe some on steroids have some small temporary improvement, but at what cost? Stay the course. Since April is a very short time, even though it doesn't feel like it.
Posts: 3766 | From around | Registered: Mar 2008
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Ditto what Rumigirl said. Steroids are the worst thing you can give a lyme patient. They drive lyme deeper, and slowly deteriorate patients ultimately making it harder for them to heal, if ever. Once you do them, you cannot take it back. It's a permanent thing. I am sorry I ever did them. Listen to your lyme doc.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
my mother has sjogrens and took steroids which set her back big time, she probably has LD, but never Dx'd with it and does not want to know.
Posts: 532 | From Texas | Registered: Oct 2004
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posted
Not to worry, I do not plan on taking any immunosuppressants.
I do believe, however, in severe cases/diseases where your immune system is destroying your organs, you really have no choice. I am not there, thankfully.
@Droid, enjoyed your videos and blog. Hope you're getting some relief. Even harder to be sick when you're so young.
@Rumigirl, I know four months, in the sceme of things, is not a long time. But every day when I swallow that disgusting thick, yellow mepron, it seems like an eternity! Just thinking about it makes me gag.
But, truly, thank you all for your replies. Gives me more strength to carry on.
-------------------- ~M Posts: 20 | From Flander, New Jersey | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: Minor surgery and steriods - complications from steroids that were not supposed to be administered. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Neither a boost nor a suppressant, but a help to BALANCE, LDN helps some with lyme (not all, though) while addressing tick-borne infections:
Medical Mushrooms -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I have Sjogrens and would never, ever take a steroid even if I didn't have Lyme.
I know it's shear misery. My eyes are as dry as the desert. It feels like a hair dryer is blowing on them all day. My mouth is always dry. My teeth are full of fillings even though I have perfect dental hygiene. Even so, I would never want to be on a steroid unless my life was immediately at risk.
My husband was put on immune suppressants prior to Lyme treatment and I saw the damage they caused. His mind was a mess, he couldn't sleep, he gained water weight which caused other problems, his labs went nuts...I don't know how anyone deals with being on steroids long term.
Even short term is misery. I had to take prednisone once for an allergic reaction to a med and thought I was going to die or go crazy...from the steroid!
Sadly, there is no magic fix to Lyme and co-infections. I suggest you look into the road back foundation. They use low dose antibiotics to cure Rheumatic diseases.
posted
Thank you all for the added information. Really appreciated. Lax mom - Sjogren's really is shear misery, isn't it...but I will take your's and everyone else's advice...no steroids! I don't have any RA joint symptoms, thank God, but I have heard before about treating it and even Lupus with antibiotics.
I'm scheduled for a lip biopsy and lymph node biopsy next week to further confirm Sjogren's and rule out Lymphoma. This, together with Lyme, is no fun at all! Question: Did your Lyme doc attribute the Sjogren's to Lyme like mine did?
-------------------- ~M Posts: 20 | From Flander, New Jersey | Registered: Jul 2010
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posted
Don't do the lip biopsy!! So many end up with a numb lip for the rest of their lives!
(and an inconclusive test result to boot)
Find out more about it first.. from those who have been through it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96205 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Do not do the lip biopsy. Just say "no, no, no" - say "no" to any invasive test. Focus on treating the tick-borne infections, what goes with those, and key support.
About the lymph node biopsy, I'd say "no" to that, too, UNLESS your LLMD suggests it. Lymphoma can be caused by lyme and other TBD, anyway. Ask about lymph support methods.
Talk to your LLMD about all this FIRST. If he / she thinks it's necessary, ask who they would suggest you see.
About "autoimmune" disorders, it does not matter what other doctors want to call the cluster of symptoms. They have no "cure" for all that, anyway.
They don't understand tick-borne disease (TBD) so they will never make the connection that the body is not attacking itself but TRYING to find the offender that they disregard. The "offender" lyme, et.al. can dismantle immune function.
Lyme literally "flips" parts of the immune system. LLMDs know this, other doctors do not.
Treat the cause. Support the body, don't cut away at it. Work with doctors who are ILADS educated and fully TBD literate.
The umbrella term, Sjogren's is very much like Fibromyalgia term (and even Lupus can be) - a cluster of symptoms. And tick-borne infections and other chronic stealth infections are so very often the underlying cause.
I was misdiagnosed with all three of those umbrella terms. But none was the true picture. You know about TBD. Start there to treat the real causes. Support the body.
It's true that not everything is lyme, though please don't be too quick to grab hold of umbrella diagnoses.
Your LLMD, if a good one, will know if & when to refer you to other specialists and then it would be to specialists who are a bit brighter than the average bear about TBD and the influences on the body. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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