[KarolH]

Hi everyone,

I am going back to the Rheumy doctor tomorrow to discuss my blood work results but I was able to get some of the results from my pcp.

A couple of things came back abnormal and was wondering if any of the brilliant people here could help me comprehend if it has to do with LUPUS specifically.

This is what I have so far that is abnormal:

B2-glycoprotein I (IGM) came back very high
RDW came back very high
Absolute Lymphocytes and Monocytes are very high
Complement C3C came back low

OH, AND I HAVE LYMES DISEASE BUT 2 MONTHS AGO WHEN I HAD MY SPINAL TAP DONE LYMES WAS NOT SEEN OR DETECTED.

I am really disgusted. I had this blood work done because the Rheumy doctor is convinced I have Lupus and now I have Lymes too.

 

[sam101360]

Hi:

I am no expert! I don't know what all the results mean, but the C3 being low can indeed be an indicator of Lupus, for me that's one of the only indicators as I am a serum negative Lupus person.

I am not sure about the LYME test - sorry, I am sure someone will be along to add more soon.

Stephanie

 

[KarolH]

Thanks Stephanie.

The Lymes test is clearly positive and I am not even sure when a tick bit me?

Frustrating!!!

 

[cath]

Hi Karol,

I'm sorry that these new results have thrown things into confusion. I remember from my own diagnostic journey how upsetting and confusing it is to think it is all going to be clear soon, only to have it get even less clear.

Lymes can cause many symptoms that mimic lupus. I would suspect that there is a good posibility that it could be lymes, not lupus given the blood results, but that is something for the doctors to work out. Of course it is possible to have lupus and still to catch lyme, or to have had lyme at some point and to later get lupus. I'm not an expert on this, but I'm wondering if the fact that the lymes test was negative but is now positive indicated that the infection is pretty recent.

Hang in there - hopefully your rheumy will sort out the confusion, and on the upside, if you have active lymes, antibiotics will help to a degree anyway.

X C X

 

[KarolH]

Thanks Cath.

I know your not a doctor but in your opinion you think the blood work is leaning towards the fact that it is Lymes?

I would take Lymes over Lupus any day.

I do say that yet I am not sure what Lymes does to you other then what I have googled and read.

 

[Clare.T]

Hello Karol

The only one I know a very little about is the B2- glycoprotein1 which I think might be a sign of antiphospholipid syndrome if other test results and symptoms fit.
Since tests for antiphospholipid/anti cardiolipin antibodies can be positive in cases of infectious diseases such as HIV, Lyme, and syphilis this specialised test is one of those that shows the result is due to autoimmune disease activity, not infection.
Many symptoms of APS resemble those of MS. Estimates of misdiagnosis of APS for MS range from about 3% to 30% depending on the source.

Out of normal range results for the lupus anti coagulant ( lupus inhibitor) and anti cardiolipins or positive VDRL under conditions can also count as a criterion towards a lupus diagnosis. See the ACR Criteria pinned at the top of this section.

All I know about Lyme disease is that it can be hard to diagnose and there seems to be a lot of controversy about the best way of testing. I dont know that there is only one Lyme disease test. It can be very hard to distinguish between Lyme and Lupus. Lyme can be quite as serious as lupus from what I read. Whether it's better to have Lyme than lupus depends on how you are affected.
I think that not realising you have been bitten and not having the typical rashes is very common.
It's hard to know what source is reliable. The emedicine article on Lyme says the tick has to sucking for at least two days to get infected but that's not true in my experience. I felt the tiny blighter bite me and at once removed it but I still got Lyme antibodies and the initial symptoms.

I don't think it's a good idea to get test results before seeing the doctor because it leads to speculation and often undue anxiety, not until you are a pretty experienced patient anyway.

Let us know how you get on and best of luck

Clare

 

[Maia]

Your bloodwork is fairly suggestive of Lyme Disease actually - they all are common in Lyme if I'm remembering correctly! Was it the Western Blot test that confirmed the Lyme or just the initial ELISA test? Lyme can produce abnormal MRIs and MS like symptoms too...

I had lupus for about 4 years and THEN got Lyme. No one picked up on the Lyme despite me asking about it as I had been bitten by on average 1-2 ticks each year that I knew about. It's pretty common to be bitten and never realize it and never see any rash. My husband plucked one out of my scalp almost 2 years ago now while I was driving as I happened to run my hand through my hair and felt it. Rash is only present in about 50% of confirmed cases of Lyme...

Definitely pursue treatment for Lyme, doxycycline for about 30 days is usually done and possibly a month longer. Even my dog tested positive for Lyme when he was tested this year and he's outside probably less than I am overall. Lyme and lupus have many similar symptoms, and Lyme is quite treatable especially if you treat it early. Hard to know how long you've had it though...

Good luck - feel free to PM me again if any other questions come up for you again with respect to Lyme.

This doesn't mean you're out of the woods yet either though for some sort of autoimmune disease too. It's definitely possible to have both. Which makes treatment quite a bit trickier because you will likely want to treat the Lyme first then any autoimmune disease you may be diagnosed with. About the worst thing you can do to someone with Lyme is treat them with prednisone or strong immunosuppressant medication like Cytoxan.

 

[KarolH]

About the worst thing you can do to someone with Lyme is treat them with prednisone or strong immunosuppressant medication like Cytoxan.

Hi Maja,

Thanks for your reply. In reference to the above quote I am curious as to what ill effects prednisone or strong immunosuppressant meds have on someone with Lymes disease?

I have to say the support I have gotten from the folks here is amazing and I thank you from the bottom of my heart.

 

[KarolH]

Hello Karol

The only one I know a very little about is the B2- glycoprotein1 which I think might be a sign of antiphospholipid syndrome if other test results and symptoms fit.
Let us know how you get on and best of luck

Clare

Clare,

Thanks for wishing me luck. I do appreciate it.

My pcp called me to tell me that I had Lymes disease and indeed probably Antiphospholipid syndrome but as far as APS he wanted the Rheumy doctor to confirm it tomorrow.

I did test positive for the Western Blot and ELISA both.

 

[Lily]

Hi Karol,

You have probably already been to the Rheumy and I wanted to wish you good luck, so do let us know how you got along.

I know very little of Lyme disease unlike Maia, but I found the following for you regarding the use of Immunosuppressants and Steroids.

[SIZE=-1]More evidence has accumulated indicating the severe detrimental effects of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.[/SIZE]

http://www.ilads.org/burrascano_1102.html

Actually that whole page has a lot of helpful info on Lymes

love
Lily

 

[LBH]

I have heard that Lymes Disease can also come back

I have heard that Lymes Disease can also come back. Effecting the joints and causing fatigue. Had a friend that has had many problems with the Lymes. But those test also indicate Lupus too. Certainly looks like Lupus to me! Hope they give you answers soon and wish you well.

 

[KarolH]

Thank you so much Lily.

I will go check out the link and yes, I have been to a Rheumy doctor and I am going back today to talk with him about all of the abnormal blood results that came back and weather or not I have Lupus along with Lymes and APS..

 

[Allerian]

Low complement levels are not only seen in lupus and can be seen in general when there is immune activation. So the fact that it's low could be from the Lyme disease as well. I think if they were concerned about it being lupus you would want to see a pos ANA, and hopefully pos Anti-DsDNA or Anti-smith. But none of those blood tests you have abnormal are specific for lupus.

 

[KarolH]

Thank you lily.

I am sorry I am late to say thanks.

On vacation and was pretty sick from the antibiotic for the Lyme.

Your information was very helpful.

 

[KarolH]

Low complement levels are not only seen in lupus and can be seen in general when there is immune activation. So the fact that it's low could be from the Lyme disease as well. I think if they were concerned about it being lupus you would want to see a pos ANA, and hopefully pos Anti-DsDNA or Anti-smith. But none of those blood tests you have abnormal are specific for lupus.

Good to know none are specific for Lupus.

So what does it mean when someone says they are serum negative Lupus???

 

[Clare.T]

Hi Karol

Sero negative lupus means there is nothing in the blood work to back up a diagnosis of lupus. It is extremely hard to get diagnosed in those circumstances. However I am not quite sure if it means absolutely nothing abnormal in any blood work ever & whatsoever or if it means no lupus markers.
I don't recall what happened to the APS testing?

All the best
Clare

 

[KarolH]

Hi Karol I don't recall what happened to the APS testing?Clare

I am going to be seeing a new Rheumy doctor at the end of July. She was referred to me by my Neurologist and I trust him a lot.

The Rheumy doctor I have been seeing has left a bad taste in my mouth and I have stopped treating with him, by choice.

I will let you know what happens once I start treatment with a more competent doctor.

 

[LolaLola]

Dear Karol,
Good Luck from me too!
x Lola

 

[KarolH]

Dear Karol,
Good Luck from me too!
x Lola

Thanks Lola.:wink2::wink2::wink2:

 

[ercooley]

Lyme or Lupus

I'm also trying to figure out which I have. I tested positive for lyme on one and not on the western blot. I go to OHSU on Tuesday to see an infectious disease doctor, hope they figure it out soon. i recently have noticed I have a 99 degree temp alot, and a reactiont to the sun. Hoping for answers soon.