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Discussion Starter #1
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:
 

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Yes, Lyme can cause false negatives although you had a fairly strong positive ANA already plus a positive APS antibody right? That combined with symptoms can be enough for a lupus diagnosis but I think your doctor is taking the best approach by treating you for Lyme and then reassessing.

Lyme can cause false negatives because it does what it can to **weaken** the immune system so this can sometimes cause auto-antibody tests to not test positive. You may also be interested to know that Lyme is associated with positive anti-phospholipid antibody tests.

Good luck with everything and you are more than welcome to hang out with us while you and your doctors are trying to determine if you also have lupus along with Lyme. It certainly is possible - I had lupus then Lyme. At least I think in that order! ;) Please stay in touch & let us know how it turns out.

Best wishes for a successful Lyme treatment. It's definitely quite possible to treat it successfully!
 

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yup, stick around, this forum is for people with lupus, people who might have lupus, and people we just plain like.

You definitely fit in the last two categories.

Fingers crossed that the antibiotics do the trick

cheers

raglet
 

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I hpe the teratment for he lymes hepls you feel a bit better Karol.
Sorry that you are going to have to go throught the testing and then the waiting game bit all over again, that really is the worst bit!!!!
But i hope you get everything sorted out soon.
I am not diagnosed yoet either and am still on here nearly everyday cause this really is a great crowd of people.

:) :) :)

Good Luck

Cassie

(sorry for the ty[pos!!
 

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Discussion Starter #5
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?:eek::eek::eek:

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!:mad::mad::mad:
 

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I'll swop you some of my Type L ?

:lol:

It will probably remain a mystery.

The thing won't be in your house because their life cycle is outdoors. Unless it's attached to something else with warm suckable blood but I don't think they go from one host to another. When they are sated they drop off I think.
Isn't it endemic in your region ?
I got mine just standing in a garden barefoot , short grass, one day for about 10 mins in a part of Germany where it wasn't all that prevalent compared with other areas. It's well worth taking precautions and checking over each other , kids and pets too, even in the UK after being outside, where we rarely think about it. Lyme disease is on a phenomenal rise in the UK probably because of milder winters. Awareness is low so it could go unsuspected and never diagnosed.

I had IV doxycycline over 10 days which got rid of the antibodies.

I hope the AB's do the trick for you too

Clare
 

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Hey glad to here that they found something. But lupus could also be a underlining issues for you. I hope that the meds work and that they do retest your ANA and other blood work. Good luck!!!

CooCoo

Please always talk to your doctor and if you have a question get a second opinion..My suggestion are just that a suggestion always talk to a health care provider
 

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Hmm! I would be questioning that too

Ohh please don't leave this forum! You belong here now as many of us do. The doctor may have diagnosed you with acute lymes and placed you on the antibiotic to see if that takes away any problems you are having. Basically giving you a test here. If it is true Lymes disease then you should get better. But if it's lupus the antibiotic is going to not work except if you have an infection. So I would not count lupus out just yet. But I hope you don't have lupus at all. Nobody in here wants to see another person diagnosed with lupus. But we see it all the time. Wishing you my best and sure hope that antibiotic does the trick and makes you well again. :)
 

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Hi Karen,

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.

Still, it makes sense to have the antibiotics and give your body tome to get over the lymes infection before looking again at what labs and symptoms are saying.

Don't stop searching for answes if you are still having problems8)

All the best,

X C X
 

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Discussion Starter #10
cath;510616 said:
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!:mad:

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

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Hi Karol, I think that you are doing the right thing by standing your ground on the ms. I think that you should go all the way thru the Lyme disease treatment, wait
about a week or so to let your body settle back to feeling "normal?", and then keep
pursuing Lupus. If you have any doubts at all in your gut, about this Rheumy, then
get a referral to another Rheumy. And don't go anywhere, you are part of this Lupie family, and we want you to stay. Keep posting.
 

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Discussion Starter #13
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.:p:p:p
 

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Hi Karol
I'm sorry about the sickness from the Doxy. Are you able to take 'live' yoghourt or probiotic yoghourt pills ?

I meet 9 out of 11 of the criteria
I am curious about what the 9 are if you feel like saying :) It's quite hard to have so many and not have lupus ! Naturally, because they are a description of what they are going to call lupus as opposed to any other CTD

All the best
Clare
 

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Discussion Starter #15
Clare.T;511311 said:
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.;)
 

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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
 

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Discussion Starter #17
lazylegs;511334 said:
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.;););)
 

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Hi Karen,


Thanks for posting the extra information about the problems you have or have had. From what you write, it seems almost impossible to come to any conclusion other than that you pretty certainly have all 3 - lymes, APS and SLE. Were the discoid lesions or your malar rash ever biopsied?

Obviously you need to kick the lymes before starting steroids or immunosupression, but after that has been achieved, you need to put the hard word on your rheumy to make a firm diagnosis of your connective tissue/ autoimmune diseases and start treatment.

Remember I am not a doctor and cannot diagnose, but the statistical likelyhood of someone having lupus if they have 4 criteria is more than 98%. Having 9 is pretty conclusive, and if the rashes can be proved to be lupus on biopsy, there is not a shaddow of a doubt about the diagnosis.

I hope you get to the bottom of all this soon,

X C X
 

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Discussion Starter #19
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.:mad::mad::mad:
 

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Hi Karol,

My name came from my family. My legs just give out whenever they want so it seemed to fit for my screen name.

I don't have MS, but I mimic MS very closely. When my neuro and I go over the MRI's and other testing she explains what she is looking for and the differences. She also had me check out the MS sites so I would understand why we retest every year and how other people deal with the same situations.

I hope the medication wipes the Lyme's out quickly.

Take care,
Lazylegs
 
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