[KarolH]

Hi Everyone,

I went to the Rheumy doctor today and Acute Lymes was confirmed. I am now on a 3 week course of Antibiotics and go back to him July 2nd.

He told me that I have to be re-tested all over again for Lupus because Lymes can cause false negatives in the blood when your looking at Lupus.

Needless to say I am frustrated and do not have a dx of Lupus.....but I have Lymes for sure.

Anyway, I would love to hang out here at this forum if it is ok as I really do not know if I have Lupus and afterall, this is a Lupus forum.:lol::lol::lol:

I hope you are all well and thank you from the bottom of my heart for being so caring, supportive, informative and patient with folks like me.:wink2::wink2::wink2:

 

[KarolH]

Thanks everyone.

I do hope treatment for the Lymes works.

Hardest thing for me is that I am extremely "A" type personality and I am driving myself crazy trying to figure out how the **** I got Lymes???

Bit by a tick, when???? Where???? How????

And, where the **** is that tick? Is it crawling in my house somewhere?

I like concrete answers when something goes wrong and with this I just do not know. Wish I were not "A" type person right now!

 

[KarolH]

Did he discuss the APS issue with you? I'd be wanting to know what is going on there, as these problems have been a long term issue (since the probable MS diagnosis at least), which predates the lymes by years right?

It is entirely possible to have APS without having lupus, and given your bloods and symptoms should be seriously considered.

No, he did not discuss APS which I found odd. He said my elevated IgM was because of the Lymes and because it was IgM and not IgG or IgA that proves that the Lymes disease is fairly new to my system.

MS dx was in 2005 so if the IgM levels tell them I RECENTLY caught Lymes then it can not be the reason in place of MS............make sense?

I will again say and I stand my ground that I have never accepted the dx of MS as I always felt they were missing something BIG!!! Also, the Interferon drugs and oral drugs used to treat MS never helped me. If anything I got worse and continued to progress with symptoms so I stand my ground and will always say, "Keep looking because this IS NOT MULTIPLE SCLEROSIS"!!!

By the way, my ANA screen showed positive yet when they did the ANA Titer it came back normal but they did say Lymes can really mess up your blood work and show false positives or negatives.

I am on treatment now for the Lymes and the doctor did say that we will re-visit LUPUS once I treat for the Lymes. I guess if I do not feel a lot better when treatment is done then they will test again for Lupus.

Some of my blood work points to Lupus and APS and I meet 9 out of 11 of the criteria yet Lymes has stopped us from moving forward right now.

Eventually I will have answers and I will not stop until I get them. I am just hoping that the Antibiotics I am taking do not make me sick considering I no longer have a stomach and suffer with severe ulcer disease. I take triple doses of Nexium, Zantac and Carafate Suspension everyday of my life!

I know with Doxycycline it can really make you sick to your stomach.

 

[KarolH]

Well the antibiotics for the Lymes is kicking my butt with some sickening side effects but I keep telling myself that I will be done the meds in a 3 week period so it will pass quickly.

July 2nd I will go back to the Rheumy doctor and re-visit Lupus.

I will keep you all posted and thanks for the offers to stay with the Lupie family.

 

[KarolH]

I am curious about what the 9 are are if you feel like saying

I do not mind at all, here we go:

1. Malar Rash, not at present but previously.
2. Discoid Rash that has left me scarred on my legs, near my ears & the border of my lips around my mouth.
3. Severe Photosensitivity!!!!!!!!!
4. Ulcers in my mouth and nose.
5. Nonerosive Arthritis
6. I had pericarditis last year in 2007 discovered after I had surgery.
7. I have tested positive for protein in my urine on and off since 2003.
8. CNS involvement shows on MRI
9. High Sed Rate and C reactive protein on and off for years along with recent elevated RNP and anticardiolipin antibodies.

Not to mention a lot of other things that point to Lupus yet are not listed as the 11 criteria..........ie: hair loss, visual disturbances, etc....

Hope I answered your question Clare. Take care of yourself.

 

[KarolH]

Hi Karol,

I hope the antibiotics work for you the first time around.

Don't give up on getting the correct diagnosis. You need to know if you really have MS, Lupus, both or something else. Did your neuro try you on any of the other drugs for MS? Not getting a response from one medication isn't enough to go by. Also it is my understanding that Progressive MS does not respond. Many of us have to try several drugs before we get one that helps.

You mentioned having a positive MRI. Where did the lesions show? Were they in the Dawson's finger shape or just random? Dawson's finger shape is usually pretty conclusive but random could mean MS or something else.

Take care,
Lazylegs

I was on Rebif and Betaserone and neither one worked. I have done several rounds of IV Steroids and one round of IVIG that damn near killed me.

I am allergic to the Interferon drugs that are provided for MS so I can not try the other 2 out there.

My lesions are not in the Dawson fingers shape. They are located in the Periventicular and Frontal Lobe regions of the brain, but they have not changed since 2005..................one of the reasons I do not think it is MS.

Just curious, do you have MS??? It sounds like you do by the way your talking and your knowledge of MS. I am relapsing remitting MS, or at least that is what they say. I am not Primary Progressive so if in fact this was MS I should have responded to medicine a long, long time ago.

Take care Lazy Legs.................just love that user name.

 

[KarolH]

Hi Cath,

No, I never had the skin biopsied but when it happens again I will.

Yup, right now I am working on kicking the Lymes bug out of me.

It is a un-welcomed guest.

 

[KarolH]

Thanks Lazy Legs.

 

[KarolH]

Claire, do you mind elaborating on your experience with Lymes? How bad was it? How long had you had it? Did it go away after the IV treatment? Did you get worse during the treatment than better afterwards?

If I do have it it means I have had it for about 7 to 9 years. I hope is it something they can get rid of.

If you think you may have LD then make sure your doctor does the Western Blot testing.

I sent you a pm with the LD forum I joined. Go register and check it out.

See you here or there...:wink2: