Hi strangers,
It's been so long since I have posted. I have been very sick for many months. No meds are working for me and my rheumy said that my next step would be Cytoxan. He does not want to prescribe that to me because I have not had children yet. (Waiting to get better first). So, my hands are tied.

I want to see what everyone thinks about this. I was watching a show on cable and it was like a mystery diagnosis show where you guess what the illness is at the end. I thought for sure that the girl had Lupus or RA - she actually had Lyme Disease "causing" Lupus. She was infectious from the Lyme and co-infections and it was causing the reaction and activating the antigens. I was amazed. I went to my rheumy appt that week and told him of what I learned. He said that it is definitely possible. The problem is that Lyme is very similar to Lupus and other autoimmune diseases - they are hard to catch on paper and have VERY close symtpoms. It is hard to differentiate between the two or if the Lyme is the primary condition. I have researched Lyme now and am amazed at the additional symptoms that I have. Plus the fact that I have never responded to the meds. The plaquenil helped only so far and the methotrexate helped the same. Other than that, it has been 3 years of torture for me. Steroids have been my best friend but I have Cushing's now and am still weaning after 5 months!

I made an appt with a Lyme's specialist in Michigan but the waiting list is 4 months to 2 years! It is worth checking out with our diagnoses. I do not want false hope, but I want to rule all else out too. Unfortunately, the only lab that can reliably test for lyme is in California called IGenex and my ins co won't let me send my blood there. The Elisa and western blot in area labs are not sensitive enough. The CDC had outdated info. I am having sympathy for Lyme patients and what they go through, just like us Lupus patients. We are struggling to get help and it makes us feel like junkies!!! I just want my life back! I know that I will be wheelchair bound in the next few years if things don't start improving. I am going downhill even though my expectations have been so high. I have officially given up hope for myself and don't feel like putting myself through something like Cytoxan. It would be great if I actually had Lyme, it's not a guarantee that the SLE and RA would go away, but they improve to have a high functioning life!
Hope everyone is doing well. I think the world of all of you and think of you all the time!
Love,
Leslie

Please don't give up on yourself:( . There is a light at the end of the tunnel, a silver lining, you just aren't where you can see it yet, but that doesn't mean it's not there:angel: . As for the Lyme disease, what is used to treat that condition? Maybe you could get your rhuemy to prescribe that treatment before the cytoxan, see if the Lyme treatment works?

Hi,
You are so sweet! I know the answer is there, it is just so hard getting there! If we had cancer or obvious condition, it would run like clock work!
My rheumy actually prescribed Doxycycline 100mg twice per day according the the CDC recommendations. It is outdated. From what I have learned, I would need 300-600 mg per day or even IV meds since it has been so many years. I have not taken it yet because of the underdosing. Plus they say it should be done under a close watch of a specialist. If it is Lyme, the bug can release a toxin that can make you really sick, like with seizures. I already have CNS involvement and this scares me!
Thanks for your support. I am sure the answer will jump out at me soon. I know things always work out with time, but it is just wearing me out.
Leslie :)

I was bitten by a tick about 2 weeks ago. I developed the bulls-eye rash, and went to the dr. He put me on doxycycline 100mg. 1x a day for 10 days. I have been carousing the net looking for anything I can on Lyme disease, and found that I am not taking enough a day, for long enough. For the last couple of days, I have felt like garbage. I have decided to try taking colloidal silver for it. I'm not sure if it will help, but I'm at the point I will try anything. Colloidal silver is said to be a cure all....anti-bacterial, viral and fungal properties. Just thought I would let you know about an alternative.

LMhart,

You said that the Plaquinil didnt work for you. Did you experience any side effects when you were taking it?

Leslie, Hi! I've been posting only spottily here for some weeks (havie been helping several close friends work thu some bog problems). But, gee, I'm sorry to read your posts about how you've been feeling.

I took doxycycline, too, when I first had rashes & they were possibly Lyme. Well, mine weren't, for sure, as they kept coming back & back. They were the SCLE "annular" (circular) lesions.

Question: does anyone know if doxycycline is a SULFA-BASED drug? If it is, could it adversely affecting a person with lupus? Have you taken any of it yet?

It's been so long. Could you refresh me? Which antibodies did you test positive for?

And is this the ONLY rheumie you've ever used?

I'll check back in soon, Leslie. Meanwhile, sending you my very best! I'm so sorry you're facing this conundrum. With huge hugs, Vee

Hi Leslie, so glad that you posted but, sad that you are still not feeling better! I went through the lyme testing about a year ago as I had lived previously up in the NW so it was entirely possible. However for me it didn't pan out. I hope that in your case it might be the solution you are looking for. It's certainly amazing how much the symptoms closing resemble each other.

Please do be careful on the doxycycline as it is after all an antibiotic (tetracycline) and will make any sun sensitivity & heat intolerance that you have worse. So the usual - stay out of the sun, away from high heat & stay hydrated especially while taking this.

I did take this med & amoxicillan for many years (starting as a teenager) and without a doubt feel that they contributed to my Lupus condition now 20 years later. Granted I took these for many years and obviously my body grew resistant to them & they eventually changed my how my immune system reacted to them. But, just something to keep in the back of your mind - it's never good to be on these for long but, if they help for now it's the way to go.

What meds have they tried? You mentioned cytoxan possibly? With the Lupus have they looked at results that the medications cellcept or imuran has? And I know this is very expensive but, there are some clinical trials out there but, a last resort might be rituxan which has shown some really amazing results in patients.

I couldn't tolerate plaquenil overall but, before I came off it saw some really positive results. (Granted starting to lose my eyesight was a bad result!). Imuran (Alzathioprine) has worked pretty well for me at least (some nausea though). I'm still on the Prednisone roly poly coaster & hopefully will be working my way off that as I'm starting Cellcept finally!

I'm just so sorry you are so frustrated & hitting a wall wellness wise. That's the hardest part & we can all understand that! Are you able to function well enough to get outside during the day? Meet with friends?

Sending a prayer your way. Keep us posted as we care!

Luv,
Suni

Hi everyone,
Thank you for your posts. I have been reading for the past month, but that's about it. I have news.
I finally got that Lyme's test. Guess what? It was positive!!! I knew that there had to be more answers. I had bee n tested 2x by local labs for Lyme. They were negative. A lyme specific lab called IGenex in California caught this. It's sick that these labs locally are not up to par. I would heavily recommend every Lupus patient doing the same.
I have Lyme Disease that is "triggering" the Lupus and RA. My doc is not promising that the SLE and RA will be "cured", but I will actually be able to control them. I have NEVER had even 1 day of remission since I started treatment, never. That's not normal. I knew there had to be more to my story. I am excited and scared. I am praying that I get relief from this pain and flaring. I am taking Doxycycline and pray that it works. I am sure that I will end up on IV Rocephin or something since I am so severe. I have a lot of neuro involvement. Maybe someday I will just be able to take Plaquenil and that's it. I take 10 meds right now (that are not working very well). I could only imagine how sick I would be if I stopped them. I tried that by the way a few months back - not pretty! I would not recommend it. If you ever have doubt about SLE or need proof that the meds are helping, that was the answer.
Just wanted to update all of you. I look forward to someday being a happier Lupus patient in remission!!!
Love,
Leslie :)

I'm so glad to hear your good news!:) It would seem only logical that if they get rid of the Lyme the rest would be much easier to gain control of. Best Wishes:wave: