[scooter]

I have been sick for 10 months now. I started with mycoplasma pneumonia that took a few months of antibiotics to treat. I still have terrible malaise and intermittent chest pain. I have Raynauds. I have repeatedly tested positive for anticardiolipin antibodies and I have a high B2 glycoprotein. My ana in the spring was "boderline positive" I saw a rheumatologist 2 weeks ago who felt I had something brewing and put me on plaquenil. When she examined me she also mentioned that I had livedo on my arms and noticed my face is red. (It usually is.) I spoke with her today and she said that my blood came back perfect and I have no signs of inflammation. Other than the antiphospholipid antibodes everything came back normal including esr, c reactive protien, cbc, rf, ssa and ssb, I forgot what else. She told me to stop the plaquenil and that I do not have an autoimmune condition.

Here is my dilemma, I don't know if I should continue to pursue this and get a second rheumatology opinion, or if I should give up on it. I don't want to convince myself that I have something I don't have, but I don't trust the doctors anymore.

Scooter:sad:

 

[KarolH]

Scooter,

In my humble opinion you need a second opinion. High Anticardiolipin antibodies along with a high B2 Glycoprotein is pretty indicitive of APS or Hughes Syndrome.

There is certain criteria you must meet and one of those is that the blood work be positive in 2 different draws separated in time by I think at least 6 weeks.

Raynauds, which sounds like something you may have has a high association with APS. Google APS, read all you can, see if anything sounds like you and then schedule a appointment with another doctor for a 2nd opinion.

I am sorry your dealing with so much for so long now and have no answers.

 

[granny weatherwax]

Hey Scooter

Welcome to the forum. I am sorry your feeling poorly at the moment and are having such a hard time, I think there are many on this site who can empathise with you. :grhug: You will find everyone here very supportive and have a wealth of knowledge to pass on.

It can often takes a little while to get sorted. It took me approx 2-3years of whinging to my GP (who was pretty usless). It wasn't until I changed surgeries and GP and got a nasty rash that they actually listened to me. My GP is brill and has been a great help to me. Looking back though I think I've been having symptoms for about 17 years or may be even longer.

I agree with Karol, push for a 2nd opinion and try to get copies of all your labs and stuff. Another tip that I have pick up from the forum is to keep notes or a diary (got a bit slack with that just lately), this will help when you get to see the rheumy you can list stuff. Don't give up, keep pushing and I will keep my fingers crossed for you.

Please let us know how you get on and take care of yourself.

Claire xx

 

[scooter]

Hi KarolH and Claire,

Thanks for the great suggestions. I think I will try to get a second opinion. I initially so relieved when she put me on the plaquenil becuase I felt like a doc was finally treating me, and when she told me to stop it was like someone pulled the rug out from under me.

This whole process is so lonely. It doesn't seem like I have anyone on my side. My GP tells me I am fine and this will probably go away on its own one day. He also suggests exercising. Ever try exercising when you feel like you have the flu all the time?

I do think I want someone to re-evaluate the APS. The more I read about the B2 glycoprotein, the more significant it seems. The normal range was up to 20 and my level was over 100.

Thanks for your warm replies!

xoxo Scooter

 

[KarolH]

Scooter,

Your smart to get that 2nd opinion and push forward for re testing for APS. Your [email protected] Glycoprotein is high and I am curious as to what your Anti cardiolipin levels were? What was high, IgA, IgG or IgM???

We all have to be our own health care advocate and move ahead until we find the answer. Eventually it does show up but unfortunately it can take time for this to happen.

Keep your chin up. It can be lonely but we are here for you, for each other.

 

[Clare.T]

I agree about getting a second opinion. As far as I know, the B2 glycoprotein indicates that the abnormal levels of antiphospholipids are due to an auotimmune process rather than to chronic infections such as Lyme disease.

Many people with lupus have these antibodies but the majority do not suffer from them. The repeated presence of anti cardiolipins or the lupus anticoagulant or positive VDRL can be a criterion for a lupus diagnosis if there are other signs and symptoms of lupus. If there are no other symptoms that are typical of lupus the lupus would not be diagnosed.
If there have been no "events" that could be attributed to the anti phospholipids / anticardiolipin antibodies, such as DVTs or strokes or repeated miscarriages then APS would not normally be diagnosed. The presence of antibodies alone is not enough for a diagnosis of either lupus or APS.

It's strange in my opinion that she prescribed Plaquenil then changed her mind. Plaquenil has a side benefit in that it slightly thins the blood which, along with a low dose aspirin that many of us take, might help prevent any "events".

Let us know how you get on please and good luck. It is important to feel confidence in doctors and to feel satisfied you have done all you can for your health.

What antibiotics were you on for the pneumonia ?

Bye for now
Clare

 

[scooter]

Hi Karol and Clare,

Karol, my anticardolipin IGM was 48 with a normal range of less than 12. The lab report considers 20-79 to be "moderate positive". This is the 4th time I have tested positive. The IGA was negative. The beta2 was positive for both IGA and IGM.

Clare, I was on 3 different anitbiotics earlier this year. I was on Levaquin on 2 separate occasions. When that didn't work I was given Doxycylene for 1 month. Eventually I had azithromycin for 2 months. I haven't been on any antibiotics since June.

I also use Qvar which is a corticosteroid inhaler to help with my lung inflammation. It seems to relive a lot of my pulmonary symptoms.

I saw my pulmonologist this morning to follow up (he was the doc that wanted me to see a rheumatologist) and I told him about the beta2 glycoprotein. He was very interested in it and said he was going to speak with a hematologist regarding it.

I also thought it was strange that she prescribed the plaquenil and then changed her mind. I guess based on the consultation she seemed to think I had something brewing, I but when she took me off the plaquenil I asked her why she initially started it and she said she put me on because she "expected to see more in my blood".

xoxo
Scooter

 

[KarolH]

I agree about getting a second opinion. As far as I know, the B2 glycoprotein indicates that the abnormal levels of antiphospholipids are due to an auotimmune process rather than to chronic infections such as Lyme disease.Clare

Something I did not know and my B2 Glycoprotein levels are through the roof along with anticardiolipin and phospholipids too.

Clare, your one smart cookie. I always learn from the people on this board, everyday!!!:wink2: