Dry eyes and autoimmune questions

Sorry I have been posting so much lately, but I'm almost 3 weeks into treatment here and I'm a complete mess, I only have about 11 days left of antibiotics and I've only gotten worse, no improvement at all. (amoxicillin 2000mg a day for 30 days) getting my blood drawn for igenex test on Wednesday this upcoming week.

I'm starting to question if I even have lyme. Now I'm going back to possible lupus or sjogrens.

I have such dry eyes lately and thinking is that even a symptom of lyme?

The more and more I think of it the more my symptoms sound like autoimmune lupus or sjogrens. I don't really have any nerve or neuro symptoms that is why I question it. Just joint pain, muscle pain, joint cracking, dry eyes, headaches , fatigue and a touch of anxiety.

I had my ana tested it was 1:80 homogeneous. A low positive. Then I tested negative for all those other autoimmune diseases, but what if they are wrong? My doctor didn't think I had them based on this blood work.

Why would ana be positive for someone with lyme. That only makes me question it more.

I hate this so much that these stupid diseases are so similar. I know I am so sick but i can't do anything but wait.

I had positive Ana in speckled pattern but mine was 1:160 I believe. I'd have to go back and look. But then I did other auto immune tests and it came back negative. I then did Lyme western blot through Igenex and it was PCR positive. I do have Lyme and my doctor told me that the positive Ana is basically your body saying hey something is wrong here. He said it's a marker basically. Then they do more investigative testing.

I get dry eyes and mouth and sometimes dry burning feeling on skin sometimes. I've been finding out it is a herx reaction for me. Not sure if it's your case, but for a while here when I had die off it was pretty bad for a week or so. And I thought maybe sjogrens. Even one of my docs thought it could be. They also said its not uncommon to have both. I backed off the medicine for a week or so because it was pretty bad and it calmed down. Thank God!

Hope this helps!

I'd call your doc.

Leah

evian - now that I think of it, your Dr. did do all the autoimmune tests and they came back negative, correct?

And - you had a known tick bite just prior to symptoms?

I had an ANA of 1:80 and tested negative for all autoimmune conditions, and told it was in my head! One of my main complaint was dry eyes (a year before I had any neuro symptoms). They gave me restasis but it is very expensive and didn't really help.

I finally got my Lyme diagnosis by an LLMD. When I questioned my doctor regarding the elevated ANA, he said that usually indicates that the Lyme was dormant at least for 7-10 years and is emerging due to new favorable conditions, stress being one of the big issues. Stress is a huge problem that taxes your immunity. One of the things that exacerabates stress is the worrying about not knowing. I definitely have been there. I suggest getting a therapist who can help you navigate the emotional rollercoaster that Lyme brings. My heart breaks for all of us that have been through this. Good luck. And start detoxing - sounds like you are herxing. It took about 2 months of intensive detox to get so that I felt like I had some normal hours during the day...

evianangel said...
Sorry I have been posting so much lately, but I'm almost 3 weeks into treatment here and I'm a complete mess, I only have about 11 days left of antibiotics and I've only gotten worse, no improvement at all. (amoxicillin 2000mg a day for 30 days) getting my blood drawn for igenex test on Wednesday this upcoming week.

I'm starting to question if I even have lyme. Now I'm going back to possible lupus or sjogrens.

I have such dry eyes lately and thinking is that even a symptom of lyme?

The more and more I think of it the more my symptoms sound like autoimmune lupus or sjogrens. I don't really have any nerve or neuro symptoms that is why I question it. Just joint pain, muscle pain, joint cracking, dry eyes, headaches , fatigue and a touch of anxiety.

I had my ana tested it was 1:80 homogeneous. A low positive. Then I tested negative for all those other autoimmune diseases, but what if they are wrong? My doctor didn't think I had them based on this blood work.

Why would ana be positive for someone with lyme. That only makes me question it more.

I hate this so much that these stupid diseases are so similar. I know I am so sick but i can't do anything but wait.

One month of antibiotics might not be enough to start feeling better...
It took me about 2,5 months before I started to feel somewhat better... but I still get horrible headaches, neck pain, muscles ache, cracking joints my eyes are extremly dry and the right eye is bloodshot, conjuctiva is inflamed..., my hands get numb when I sleep... however, I do have some good days and I hope there will be more and more of those. I was on Doxycycline- first at 100 mg twice a day for about 2 months, then increased the dose to 200 mg twice a day. However, when I was on higher dose of doxy, I started having issues with blood pressure rising, and pressure in my eyes was high when I went to see ophtalmologist.
Now I am transitioned to Cowden's herbs.... Samento and Enula. It is challenging, I would say even more than antibiotics... but I have high hopes.
I do not have Lyme proven 100% by my blood tests, it is a clinical diagnosis...but I do have co-infections that normally come with lyme such as Mycoplasma and a bunch of viruses that I do not have an idea where could I get them such as EBV, Citomegalovirus.....I did test negative to all of the autoo-immune diseases and went to see multiple doctors and most of them were saying that it is all in my head...

We can not be 100% sure if we do not have 100% positive tests, or we can doubt in acuracy of our tests as labs do make mistakes, but at least, we can try to use the right treatments to get better....

Good LUCK to all of us...

Post Edited (Planny) : 3/18/2016 12:25:45 PM (GMT-6)

E.Angel - did you get your Igenex results yet? Tell you something, well after getting my positive results for Lyme I decided to get tested through another form of alternative testing and that person told me that I have Lupus. The testing person went on to read the description of lupus whilst holding the dictionary and was adamantly saying stuff that just did NOT entirely apply to me. They were trying to convince me that Lupus is what I have instead!! I did not fall for it - my gut was just MOT having it. I then questioned the testing device and actually made this person aware that Lyme does not come in one form only - apparently, the testing device ONLY had Borellia burgdorferi on it. I put the pieces all together after I contacted the company who makes the device I was tested on. We all know that co-infections exist - which I have - and unfortunately, the device does not have all the Lyme co-infections on it, And, PLEASE REMEMBER THAT LYME IS A GREAT IMITATOR OF A LOT OF OTHER DISEASES. That is why a lot of people are suffering for years without any progress because they are told by doctors they have lupus or rheumatoid arthritis or whatever - if you are taking ABX for years for whatever and getting worse, you must take your own health into your own hands and be your own advocate and detective and keep asking questions. You know your body and symptoms best - better than any doctor you visit. Trust your gut- it'll never steer you wrong. As for the eye dryness - you ight want to check out Demodex parasite - My immune system was so friggin down last August that somehow I got that - started with such pressure in the eye, by AM eye was so swollen and after that dryness. Just so uncomfortable. We really need to strengthen our immune systems - bottom line.