Lupus OR Lyme?

Hello everyone,

I post mostly on the Lupus board but really need some information on Lyme Disease. So I've been diagnosed with Lupus since Feb. 2013. Doc said with lab, clinical exam, and family history he thinks its Lupus. What you think its Lupus? I go to an arthritis clinic that has many different doctors who treat many patients so I don't always get the same doc every time I go. One doc will tell me its Lupus and another will tell me its MCTD. Wait I'm confused?You guys work in the same office and you can't even get on the same page! All they ever want to do is send me home with more pills that don't work for any of the symptoms I'm experiencing and they make me terribly sick. Everything in my body says its not Lupus.

In August of 2014 I was experience terrible brain fog, muscle and joint pain, and exhaustion along with other strange symptoms. Couldn't process information or have an intelligent conversation. I remember talking to my husband and him looking at me like I'm crazy. He said what are you talking about and wow your really out there today. Had all sorts of testing by Neurologist that said he clearly saw that I was having neurological symptoms but all the tests came back negative. Even the Lyme so I said it must be Lupus then.

This past Febuary, I was at the library and the Librarian said that her sister-in-law had Lyme disease. That she was ms-diagnoised for four years with Chronic Fatigue Syndrome. She said that the tests normally ran in doctors office is not accurate and that I should watch a documentary call Under or Skin which she ordered through the library. I watched that and a light bulb went off! I asked my husband when was that that I had that huge red bump on the back of my leg. He said it was the summer before I got sick because his parents were here in September from Florida and I was terrible sick with a headache and stiff neck and had all I could do to make it through dinner. I called the Rhyme next day and he said it was not related to my Lupus and he then went on to blame it on the air conditioner in my room. What?

Anyway, I had been sitting down by the lake on the grass watching the kids play in the water when I was bit by what I thought was a bug. It really didn't hurt but I swiped my leg and dismissed it. A few days later I felt this thing on the back of my leg that was huge and flaming red. I went in and asked my hubby to look at it. It was about the size of a silver dollar, hot, very red and had a bite mark directly in the middle that continued for weeks along with cold like symptoms. I never made the connection until I saw the documentary. I immediately called my Rhyme and discussed this with him but he said we ran the Lyme test and it was negative "you have to come to grips that your have Lupus" is what he said and hung up. Just because I have a family history of Lupus that's what it automatically is? No discussion of other possibilities? Was he upset because I questioned his diagnosis? Hello, this is my life doc.


I refused to accept this. I have two aunts that have Lupus and the symptoms do overlap but my Aunt says your really get some strange symptoms that I have never experienced. I would get a second opinion. My husband and I are getting the blood tested though Igex lab but kinda confused on what to order and how to go about getting this done. Any help would be greatly appreciated.

Thanks for letting me blab on and on,

K

Hi Newhouse!!
Welcome to our community!! I'm so glad you found us!

I too agree that you shouldn't just accept your diagnosis if the meds aren't working and others that have Lupus are telling you those things! And since you have a clear memory of being bitten by some thing, a rash and then cold (or flu?) like symptoms - that's exactly how Lyme starts, so you are wise to want to at least rule this out - or find out that's what it is so you can get the proper treatments!!

Girlie has already given you some great information and I'd like to add a bit more for you - don't worry, we all know that it can get overwhelming, so ask all of the questions you need to!! We are here to help!

To enable your email option in your profile, go to your profile, then you can find it under 'edit profile'. Be sure to click the submit button to actually save your preference.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can also email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org/​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


​ You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.​​www.ilads.org/lyme/ILADS_Guidelines.pdf​​

Again, we are here to help you the best we can, so please ask all the questions you need to!!

Doctors who treat Lyme Disease are MD's, who have had training on diagnosing, testing, treating for lyme disease and co-infections.

Most regular MD's aren't educated or experienced to treat Lyme disease. So, that's why you need a LLMD.

I'm not sure why you're asking about a Psychologist....

Yes I have had a positive Ana test the first time I saw the Rhyme plus my white blood cell count was elevated. Forgive me for I can't remember the numbers. I had swollen joints in hands, feet, muscle and joint pain, profound fatigue, headaches, mouth ulcers,light rash on face when I original went and previous DX o f rhynauld' s disease. I have two aunt's on mother's side who have DX of lupus, sister and brother DX of RA. My DX MCTD but like I said he thinks it Lupus so we're treating for Lupus. Meds are plaquil, folic acid, vit D, occasional steriod shot. He has wanted to put me on methotrexate or Imuran several times but I refuse due to its not a necessity yet. It's always we could try this or that. Not good enough for me. He doesn't wanna hear about tick bite anymore. Said the lyme test he ran was good enough.

K

Good luck to you Newhouse. It is VERY common for regular doctors to dismiss Lyme. There is a controversy regarding this diagnoses. It is really terrible and hard to find a doctor to treat it. You can do it, but not thru regular doctors. You have to fight for your treatment. It sucks, but you can do it and you can get better!

You have found a great community here and we will all help you.

Then it's clear you should find another doctor for this. I listed ways to find a LLMD that has ILADS training above. If I can be of help, please don't hesitate to email me!!