I don't get sores per say, but have numerous fleshy lesions that developed over time starting a few years ago. They do not hurt, grow, or go away. A number of doctors have looked at them for me, assuring me they are not pre/cancer, but no one is quite sure what they are. Even my LLMD is stumped with that one. The only consequence (so far) of these lesions is that the inside of my cheeks and under my tongue have a bumpy topography.
The sores/ulcers you describe sound more consistent with lupus, but I have no medical training and am just basing that on what I've read. I believe such sores can be biopsied, you may want to call your doc before they heal.
LLMD looked at them, wasn't sure either. Primary doc said it's an ulcer, fluid filled not of concern. I know its fluid filled b/c it popped! Primary said Def. not cancer. I'm seeing a rhumatoid next tuesday (at my request, my primary didn't feel it necessary). Hopefully they will still be there for the doc to see.
LLMD said people can often show signs like this of auto-immune disease and it often goes away after treating lyme. They do not know why or what the connection is yet b/w the diseases... My testing to date for lupus, RA etc has come up neg- but I'm anxious to see what the rhumie says next week.
Yes, I've been given the vague auto-immunse-y answer for my issue and my LLMD has also expressed it could improve with treatment.
I think you are wise to seek out a rheumatologist. I did so as well before committing to an LLMD and Lyme treatment.
Oddly enough my primary didn't think it was all that necessary to see one as I've already been tested and all the lupus markers are neg-. I used having psoriasis and the possibility of getting psoriatic arthritis as a means of pushing for the rhumie- you gotta do what you gotta do! I'm also starting the search for a new primary...
I saw my dentist today who said these do not lool like what you'd see with lupus or auto-immune and that they def. are not cancerous but yet he said it is a fluid filled cyst of an odd shape he's never seen. He said I should see an oral surgeon who will probably give me the option to remove it if I want. So I'll go but after I see the rhumie on march 2nd. I'm hoping the sores are still there for him to see by then. The cyst thing on the floor of my mouth actually changes sizes, comes and goes, bigger vs. smaller, very strange. I thought it had popped and went away on saturday but it's back. Dentist said he thinks all my mouth things are un-related- that the lip thing is b/c I bit it (and I do recall doing that), and that in my cheek it has something to do with the gland, he said it's of no concern and then the cyst. But I find it odd to have them all at the same time...
After doing some googling I've found that mouth sores have been assoc'd w/ Lyme.
I also found thru googling that mouth sores can be diet related. I saw mention of low protein. LLMD put me on a sugar free-yeast free diet- no dairy plus I'm vegeterian so I've been worrying about getting enough nutrition on this diet... Depending on what the rhumie says, I may explore that and seek the help of a nutritionist, well I should probably do that in addition to the rhumie actually. I'm finding this diet realy really difficult. It's worse than the meds for me...
What a prcoess this has been... But after the rhumie, I think I will have covered mostly everything. I already saw 2 neuros, 2 internal meds, my primary, dentist, soon an oral surgeon, eye doctor, & rhumie. Am I missing anything LOL?
I fear the eye doc will fidn stuff wrong too!
About your diet ... I was on a 'greens and proteins' diet for about 8 months, meaning (like you) no sugar, no yeast, and no dairy, but also no grains. Just vegetables and eggs and meat and seafood. Sounds dreadful, but it really wasn't bad. Or so I thought.
I was cooking only with olive oil, and it turns out (from what I read later) that there are some essential fatty acids (EFAs) that olive oil doesn't have. My skin was very dry and flaky (more than usual) and would even bleed slightly if I flaked the dry skin away. My memory was lousy, but I blamed that on Lyme. I seldom felt good, and it was getting worse.
I finally figured out (in my half-witted condition) that I needed to do something about it, and started supplementing with fish oil. NOT cod liver oil, but fish oil. I read in a bunch of places that cod liver oil is too unbalanced, and it can cause even more problems, leaching minerals from your bones or something awful. Oh yeah, and a lot of my hair fell out somewhere along there, but I don't know if that's related. Good news is, it's growing back in just fine.
You note that you are a vegetarian, but I'd strongly suggest that you consider making an exception for at least a while till you are feeling better. I'm not medically trained, so don't take this as medical advice ... just some hard-learned lessons of my own.
I even saw a nutritionist toward the end of the strict diet, and she wasn't all that helpful. She suggested selenium, which I am now taking, but she didn't say much else. She was trying to get me to up my calories, which I have kind of done by adding back some fruit (apples, blueberries, tangerines), but I'm still off grains. I also added sugar-free yogurt in the last couple of days, and it's sitting well -- I'm lactose intolerant, so I'm eating sheep's milk yogurt for the first time -- pretty tasty.
A lot of what I just said may not apply to you or affect you, but you might have a vitamin or mineral deficiency of some kind if your diet has been restricted. You can go back to being a vegetarian/vegan after you're well! You might google something like 'vitamin deficiency vegetarian' and see what pops up.
I've not heard of Lyme giving mouth sores, but it does a lot of unexpected things.
Let us know how you do and what you find out.
It's tough... I grew up vegeterian, started it as kid. Meat and fish just always totally grossed me out. Not sure if my body would even know what to do with it if I ate it now LOL. I'm now 35 yrs old so I've been a veggie for at least 25 yrs now. I was at least 10 when I stopped eating meat/fish, and even then what I ate wasn't much- checken fingers and hot dogs LOL.
Yeah- most symptom lists for Lyme did not include mouth sores, it's def. more in sink with lupus/auto-immune. But I did find a couple things mentioning it. LLMD said she had one other client with a mouth lesion. Hard to tell with these diseases that impact so much what's what. I changed my meds and diet all at the same time too. I'll let you know what the rhumie says next tuesday. It better not snow here in Philly so I can make it to my appt!
Not sure if I can post to two people on here, let's see if this works...
I saw the rhumie today. He told me his suspicion that my psoriasis could be cuasing some of me auto-immune type symptoms. I of course look of him strangely and he said I know, everyone thinks of it more as a skin disease but it is an auto-immune disease and can cause auto-immune symptoms when your body is overloaded (with trauma, infection etc). Now he did not specify what sympoms he thought were related to sporiasis and stupid me forgot to ask and thought of it when I left...
I asked him about lupus. He said it would be the last thing on his list of possibilities as I just do not for the lupus profile (but he also did not specify what would be tops on his list and again I did not ask or think of it until later).
He ordered blood work:
Comp ANA Panel
Complement Component C3C
Compelemt Component C4C
Vitamin D, 25- Hydroxy
Do you know if any of these can be impacted by Lyme? I know the sed rate can be. Wondering about Vitamin D? I go back for results March 16th.
So I feel better about my Lyme Dx at the moment and having these labs done might help too. But as you may recall I'm now taking the correct dose of my Abx and my stomach isn't handling it so well. I feel nausous all the time. It's awful! I'm taking acidopholus and ginger capsules with my meals. This isn't fun...
The one thing I really liked about this rhumie was that he seems to understand lyme disease, how bad it can be, how bad you feel, and how hard it is to treat.
This sounds like progress toward figuring things out. That's good!
I write down my questions before I go into my LLMD appointments ... even then I forget half of them, but if I have a little pad with the Qs written down, I'm more likely to remember. My LLMD has recently had the staff hand out a paper when you arrive for the appointment that asks among other things like what meds are you on: 'What three questions would you like answered today?'
I have to restrain myself from writing down "What are this week's winning lottery numbers?" and "When will I finally be well and never have to come back here again?" ... but I think it's a good approach esp since so many Lyme pts have such lousy memories (me included sometimes.)
Others here can speak to the tests ordered -- glad you like your MD! Hang in there.
PS By coincidence I was reading somewhere the other day about psoriasis having an autoimmune component to it. I like the Mayo clinic website -- it doesn't talk down to patients, and also has a little respect for alternative medicine approaches. You might look there and search for info on psoriasis. If the bot blocks my reference to the clinic website above, it's M as in Mary, A for apple, Y for yellow and O for orange.
Yeah- I make a list too of questions I know I want to ask but thinking on the fly seems to be my problem lately... I always think of things as I pull out of the parking lot! But I am making a list for the next visit already.
Psoriasis is technically an auto-immune disease though it is mostly treated by dermatologists though I learned today that rhumies treat it too apparently. I also knew that psoriasis gets worse with stress/trauma but did not realize its effects could go beyond the skin- that was news to me. And the doc even started off by saying you may not buy this, but I think some of your symptoms could be linked to your psoriasis, and I'm sure I did look at him as if he was nuts (usually the docs are looking at me this way LOL). I'll surely check out the mayo site.
Both c-reactive protein and SED rate are, to my understanding, non-specific markers for inflammation. I had abnormally high levels in both, which by itself is not diagnostic, just confirmed that I had systemic inflammation.
There are different forms of vitamin D in the body, the 1,25 "active" form and the 25 form. Some theories, including the Marshall Protocol, state that a high ratio of 1,25 : 25 is a meaningful test result. "Vitamin" D is not really a vitamin, it's a hormone, and its role in immune processes is not (to my knowledge) fully understood.
My vit D was very low when measured near my sickest point, I'm not sure of the units but my value was about 1/10 of the lowest normal value. My 1,25 was low, too, but it was about 4-5 times greater than my 25 value. I'm not sure if I just had a deficiency (like many North Americans, esp. ones like me who don't get much sun!) or if it was, at least in part, due to Lyme.
My ANA was always negative, but I've read many cases of Lyme patients with weakly positive ANA that often resolves with treatment.
I think my only other abnormal test result was the presence of thyroid antibodies, which could mean Hashimoto's. I'm not diagnosed with that, though I do suspect my Lyme/TBI has messed with my thyroid.
I do not have psoriasis, but from time to time I get odd breakouts on my scalp and in my ears where my skin seems to grow like crazy. This results in thick plaques and lots of dry, hard skin. I can be fine for months, then within a week it's like my scalp just falls apart. Then, usually months later, it slowly goes away again.
It seems too mild to be psoriasis, but whatever it is, it is annoying/embarrassing and I do suspect it's linked to my chronic infections. The last few months it's been in/around my ears. Often when I scratch away large pieces of skin, an odorless colorless liquid seeps out. It's like the inside of my ears got burnt, but without exposure to heat/sun. Just another one of my charming features!
Good look with the blood tests. If nothing else, always good to keep an eye out and look for changes over time.
Well, I got a call from the rhumies nurse on friday. She said they got my blood work back and that my Vitamin D was "extremely" low and that the doc wanted to call in a script to my pharmacy for something I should take once a month. I have not picked it up yet as I was in Wash DC this weekend but will pick it up today. I know Vit D has been linked to psoriasis too but I'm thinking it must be really low for them to call before my follow up appt on the 16th. So I wonder if Lyme could be making my Vit D even lower than usual. But I will not take it until I call my LLMD tomorrow just to be sure this is not something I should worry about mixing with all my lyme meds. I asked the nurse if anything else showed up in the labs and she said the vit D is the only thing the doc mentioned. I go to him March 16th for follow up.
Not sure what Vit D test was done. Hoping to get copies of my labs tomorrow.
The rhumie said the psoriasis can show up in the ANA so it sounds like I may always need more testing to see if it is my psoriasis or something else going on...
Wonko- have your tried ointments for your rashes?It sounds a little like psoriasis (mine started in my ears) but my psoriasis never goes away. In fact it broke out like mad when my lyme symptoms were at their worse, which is typical. Then it went away for a like a week, and that has not happened once since 1993! I told all of my docs then I know something is not right with my body, this never happens so I know something is up. They all gave me odd looks except the LLMD and derm of course. But then the psoriasis came back, of course, but in a different form, guttate psoriasis which is associate with strep infections- interesting huh? The rhumie wants to try some new hefty meds- IV/injection type stuff- Remicade or Humira for psoriasis.
I didn't realize that about the ANA. I also tested positive (although it was just a direct test so I don't know titer) . I've had eczema since I was 3 and wonder if this could cause it to be +. When my symptoms started in December my eczema also went away completely for a week. It was a bit freaky I remember telling my husband that my body must be really trying to kill something else off if it's leaving my hands alone for once!
I'm glad you got some answers. It really is like trying to put the pieces of a puzzle together.
Wow! That's crazy. I said the exact same thing to my hubby! I said my psoriasis is pretty much gone, my body must be really busy working on something else because nothing gets rid of this stuff! I knew then that I was not nuts and something was up with my body! But it's back with a vengeance now.... Should've known it would not last. I'm scared of these hefty drugs though- the Humira & Remicade. At the same time I recognize that my psoriasis is so widespread that the topical meds only have limited impact at this point.
Is eczema considered an auto-immune disease too? I was once told the eczema and psoriasis were like cousins. So I think it might be... If so, it may be that it is impacting your ANA. I know the derm and rhumie both said that the ANA can pick up psoriasis.
Have you been diagnosed yet or are you still in limbo? It is quite a puzzle.
It depends who you ask, but yes, eczema is widely considered to be autoimmune.
I was dx with lyme about 4 weeks ago. My llmd also ran an ANA test, so I was worried when it came up positive. There are just so many symptoms (aches and pains) that I wonder if the lyme is triggering an autoimmune response.
Eczema is definately back. Does your psoriasis flare with stress? My eczema does, but it is limited to my hands.
Yes, psoriasis def. flares with stress. I was Dx'd with Lyme in January but saw a rhumatologist a couple weeks ago b/c I was having some auto-immune type stuff popping up recently like reynauds in my feet and mouth sores. I was worried about lupus... But the rhumie seems to think that the Lyme is making my psoriasis over reactive and causing auto-immune type stuff and maybe even some psoriatic arthritis. He said lupus would be bottom on his list b/c it does not fit me. He did order more blood work which I go back for results on the 16th. But they called and told me that Vitamin D was extremely low and that they wanted to call in a script to my pharmacy. I should learn more next week...
From what I've read the ANA can come up pos+ for various reasons and in normal people too... I found seeing a rhumie helpful to put my mind at ease and having further testing helped too. My ANA came up with some funky "cytoplasmic speckling" but it didn't say pos+. The rhumie said this was probably the psoriasis showing up but at least with further testing we can see if somethign else is up...
I have Lyme Diease and I'm 11. I get these big white sores in my mouth every month and they don't really go away. But when they do I get another one the next day. I get up to ten in my mouth at one time!!!