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A Few Questions: Plaquenil & Doxy Sun Sensitivity & Sjogrens
Hello everybody....
I have a couple issues going on that I was wondering if you all have any thoughts on:
1. I saw my LLMD for follow-up on Friday and she has now given me a script for Plaquenil (pending clearance from an ophthalmologist first) to work on the cysts is what I think she said... Was wondering if any of you have taken this for Lyme and what I can expect as far as side effects? I don't really like taking meds so being on Doxy plus this is making me nervous. But... I'm getting better so the meds seem to be working!
2. I was having a week where I almost felt like a normal person but.......Now that we are de-frosting here in PA I was outside twice for short times and got burnt on my face. And I'm wondering if I even got burnt through the car on a 2 hr drive b/c the sun was driving me crazy! Never had this before. Could this be from the Doxy? I've read that sun sensitivity can be a side effect. It doesn't feel like normal sunburn either- hard to explain.
I just went through testing via my rhumatologist. I have a pos+ ANA & SSA so I surely have an auto-immine element going on here too which I wonder is related to my sun issues. The rhumie said b/c all my other blood work does not show "active disease" and b/c of the lyme, he does not feel I need any auto-immune type meds now. He just wants me to re-do my blood work every few months to be sure nothing changes. My Vit D was one of the lowest he's ever seen at a 9 so I am on a cript for that. LLMD says her bet is that some or all of my auto-immune issues could resolve with lyme treatment. Apparently lyme often triggers auto-immune diseases/responses.
3. My unprofessional diagnosis for myself is that I'm having some sjogrens with my lyme. Has anybody else out there had this or heard of this happening?
I have a couple issues going on that I was wondering if you all have any thoughts on:
1. I saw my LLMD for follow-up on Friday and she has now given me a script for Plaquenil (pending clearance from an ophthalmologist first) to work on the cysts is what I think she said... Was wondering if any of you have taken this for Lyme and what I can expect as far as side effects? I don't really like taking meds so being on Doxy plus this is making me nervous. But... I'm getting better so the meds seem to be working!
2. I was having a week where I almost felt like a normal person but.......Now that we are de-frosting here in PA I was outside twice for short times and got burnt on my face. And I'm wondering if I even got burnt through the car on a 2 hr drive b/c the sun was driving me crazy! Never had this before. Could this be from the Doxy? I've read that sun sensitivity can be a side effect. It doesn't feel like normal sunburn either- hard to explain.
I just went through testing via my rhumatologist. I have a pos+ ANA & SSA so I surely have an auto-immine element going on here too which I wonder is related to my sun issues. The rhumie said b/c all my other blood work does not show "active disease" and b/c of the lyme, he does not feel I need any auto-immune type meds now. He just wants me to re-do my blood work every few months to be sure nothing changes. My Vit D was one of the lowest he's ever seen at a 9 so I am on a cript for that. LLMD says her bet is that some or all of my auto-immune issues could resolve with lyme treatment. Apparently lyme often triggers auto-immune diseases/responses.
3. My unprofessional diagnosis for myself is that I'm having some sjogrens with my lyme. Has anybody else out there had this or heard of this happening?
Perhaps you should see a rheumatologist for the sjogrens? there are things that can help with the symptoms from what I hear.... eye drops. saliva mouthwash etc.
My opthalmologist and oral surgeon both said I do not show signs of sjogrens at this time... Oral surgeon mentioned that sjogrens is really severe dryness and does impact the gums so you should keep up with your dentist too.
My opthalmologist and oral surgeon both said I do not show signs of sjogrens at this time... Oral surgeon mentioned that sjogrens is really severe dryness and does impact the gums so you should keep up with your dentist too.
If you google 'LLMD North carolina' or wherever you are willing to travel, you may find some links. Also try truthaboutlymedisease [dot] come and ilads [dot] org websites for their referral functions.
I have also had problems with massive amounts of antibiotics -- the yeast-based probiotic my LLMD insists on led to a systemic yeast infection that I am still dealing with. I am looking at herbal remedies soon, since I think long term abx are not in the picture for me. (Other kinds of probiotics that are not yeast based are okay and that's what I'm taking now.)
Perhaps if you could locate an immunologist who is also broadminded about Lyme it would be helpful to you...?
The bot here blocks email addresses in the open, as it did with yours. There is a private message function on this website (click on 'inbox' in the upper right hand corner of the screen, then click on 'compose', and address the message to the screen name for whoever you want to send to.)
I have also had problems with massive amounts of antibiotics -- the yeast-based probiotic my LLMD insists on led to a systemic yeast infection that I am still dealing with. I am looking at herbal remedies soon, since I think long term abx are not in the picture for me. (Other kinds of probiotics that are not yeast based are okay and that's what I'm taking now.)
Perhaps if you could locate an immunologist who is also broadminded about Lyme it would be helpful to you...?
The bot here blocks email addresses in the open, as it did with yours. There is a private message function on this website (click on 'inbox' in the upper right hand corner of the screen, then click on 'compose', and address the message to the screen name for whoever you want to send to.)
I also think my lyme caused me to get sjogren's. I have dry eyes so bad it hurts to wake up in the morning... no oils on my scalp...my hair is fallingout... my nose is so dry it feels like it's going to bleed and I hardly have any saliva and my gums are now receding. I read that plaquenil is a treatment for both lyme and sjogren's. my problem is I am so suseptible to getting c diff. I've had it with oral antibiotics and i may have it now (i was on IM claforan shots)... or it could be from celiac disease... just found out I have that too. Glad to hear that autoimmune disorders can be reversible. By the way I'm looking for a good llmd as I just moved to North Carolina. I don't mind traveling out of state. Would you mind e-mailing me Kristi_m_nelson***@****
with who you see? Thanks
with who you see? Thanks
yup- already taking MG!
Ah! I too have Lyme and Ehrlichiosis. Got bit almost a year ago, but haven't taken any abx for it, because I couldn't tolerate the meds due to a systemic yeast infection I got from yeast-based probiotics. I'm supposed to be on doxy.
I have read that muscle twitching and aches and pains and heart palpitations can be due to low magnesium, since the Lyme bugs use magnesium in their reproductive cycle. I began to supplement with magnesium quite some time back, and the muscle problems went away entirely. You might ask your MD if you should try that.
I have read that muscle twitching and aches and pains and heart palpitations can be due to low magnesium, since the Lyme bugs use magnesium in their reproductive cycle. I began to supplement with magnesium quite some time back, and the muscle problems went away entirely. You might ask your MD if you should try that.
Forgot to mention I tested pos+ for ehrlichiosis too
I'm def. in the treat lyme first and then see what happens mode. Espec b/c the drugs for auto-diseases are so bad for lyme plus the doc says my labs are not showing active disease or other auto immune disease markers right now ,so sounds like he would not be willing to do meds even if I wanted to anyway. Also, I'm feeling really well so my Abx seem to be working. My neuro symptoms,muscle aches/twitches have decreased greatly in the past 2 weeks. They increased a little the past 2 days but I'm due for my period, wonder if that's a factor and I've been busy/ tired. But I suspect that if my main problem were an auto-immune disease/sjogrens, I would not be responding to abx this well. Just a guess...
If I were getting worse it would be a different story. Also, if my blood work for auto-immune changes for the worse, then we'll obviously we'd probably make the move toward meds. I'm glad the rhumie wants to monitor things so closely though. He seems on top of things.
He says low Vit D can cause muscle aches, usually of an entire limb or like half of it. My LLMD is running blood work on other vitamins too now. I told her that although I've always worn contacts since grade school I notice that since lyme my eye sight is worse. She said that is common w/ Lyme and can also be linked to Vit A. I will ask the eye doc about the sjogrens... good idea.
If I were getting worse it would be a different story. Also, if my blood work for auto-immune changes for the worse, then we'll obviously we'd probably make the move toward meds. I'm glad the rhumie wants to monitor things so closely though. He seems on top of things.
He says low Vit D can cause muscle aches, usually of an entire limb or like half of it. My LLMD is running blood work on other vitamins too now. I told her that although I've always worn contacts since grade school I notice that since lyme my eye sight is worse. She said that is common w/ Lyme and can also be linked to Vit A. I will ask the eye doc about the sjogrens... good idea.
Sounds like you're making progress! But annoying how uncertain and even scary the progress can be, huh?
Some have posted here about a sunburn-type effect, perhaps they will kindly comment on your inquiry. (Wonko? are you there?)
Were you tested for co-infections? I never had dry eyes until I got Lyme again -- and this time I also got Ehrlichiosis/Rickettsia -- as the disease fades, my eyes are a good bit better. Dry eyes are a symptom of Sjogren's, but also a symptom of other things. When you see the ophthalmologist, I'd certainly ask.
I read varying things on Vitamin D deficiency. For a while, MDs were dead certain low Vitamin D was bad, but lately have been reading that it is not something that needs the particular treatment that is usually recommended (tho some recommend D3 only). Your LLMD's comment that the auto-immune type symptoms may well resolve with Lyme treatment sounds reasonable, and that's the route I have followed for myself, but I'm not an MD or medically trained. Your rheumatologist sounds like a reasonable person to be willing to wait and see.
Let us know what you decide and how you do.
Some have posted here about a sunburn-type effect, perhaps they will kindly comment on your inquiry. (Wonko? are you there?)
Were you tested for co-infections? I never had dry eyes until I got Lyme again -- and this time I also got Ehrlichiosis/Rickettsia -- as the disease fades, my eyes are a good bit better. Dry eyes are a symptom of Sjogren's, but also a symptom of other things. When you see the ophthalmologist, I'd certainly ask.
I read varying things on Vitamin D deficiency. For a while, MDs were dead certain low Vitamin D was bad, but lately have been reading that it is not something that needs the particular treatment that is usually recommended (tho some recommend D3 only). Your LLMD's comment that the auto-immune type symptoms may well resolve with Lyme treatment sounds reasonable, and that's the route I have followed for myself, but I'm not an MD or medically trained. Your rheumatologist sounds like a reasonable person to be willing to wait and see.
Let us know what you decide and how you do.
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