Possible GCA with Lyme

[JManno]

Hello everyone. I am new to this site as I found it while looking up information. For approximately six weeks now I have had symptoms of GCA. My GP agreed and since my blood showed large platelets around Dec 10th, he told me to have my ESR and CRP tested at the ER. ESR was normal and CRP was low. I saw a rheumatologist who did an exam and said he doesn't think I have it (based on my age). I have swelling in the arteries on the left side of my head. They're not very visible, but I can feel them and I have a piercing and throbbing headache in the same areas, along with pain near my ear when I chew. The pain just started again today after subsiding for about four weeks. I also have pain in the left side of my chest, just under my collar bone, spreading to my shoulder and down my arm. I'm very worried and believe I have GCA as I was just told on Thursday that I tested positive for Lyme, Babesia, and CMV last month. I know that Lyme can cause GCA sometimes, but I don't know what the protocol would be since I just started doxycycline hyclate Thursday night. Everything I'm reading seems to say you can't take steroids with Lyme, so I'm not sure what to do.

[PMRpro Ambassador]

I think you may have misunderstood: Lyme disease can be misdiagnosed as many things, including polymyalgia rheumatica, and there are 3 cases reported in the literature where the diagnosis was made of GCA (giant cell arteritis) but in fact the patients had borreliosis. That isn't the same as Lyme causing GCA. It is more than possible that your symptoms of GCA are actually due to the Lyme infection.

You haven't said how old you are?

[JManno in reply to PMRpro]

I just turned 30. I might have misunderstood and honestly hope so because they are classic symptoms of GCA. I read of a few studies where a biopsy was done for GCA and it showed spirochaetes. Thank you for bringing that to my attention, though. I'm probably too busy being in pain and freaking out to read thoroughly. I only know Lyme can trigger autoimmune responses, and I thought that might be one of them.

[PMRpro Ambassador in reply to JManno]

You are pretty young for GCA - not that means it isn't. But see how the treatment for the Lyme goes. Though I did notice one of the papers suggested infusions for the GCA-type presentations as being faster than oral medication.

Good luck.

[mel-21]

Hi dear

I'm 38 years old and my GP says that I'm to young to have GCA but I think I might have it. Beacuse I too have a pain on the left side specially in the shoulder, side of my neck, back of the neck, pain inside of my ear, that travels to my left upper side of the sculp and then to my left eye, around the eye and eyebrows. Recently it causes my eye to see black dime sized shadow every time that I wake up or try to sit after sleeping position. If I sleep on my back my neck will get painful that the pain radiates to my eye and sculp. But when I walk or move I feel little better. But I can see the shadow still. This thing worries me to much. I did all kinds of tests like a full blood works for inflammation and immune system, carotid arteries and heart ulthrosound, EKG, halter monitor, brain MRI and eye tests all didn't show abnormality. But I still suffers here. I really don't know what can be the cause of this problem but google only take me to GCA.

[JManno in reply to mel-21]

Same thing for me. Age is not really a restriction on GCA, as people as young as 23 and 17 have got it. My GP understands that things are only "rare" because they aren't diagnosed enough. He wanted me to have a biopsy last month, but I couldn't find a Surgeon. Then the pain went away. Now it's back in both sides of my head (right started yesterday) and I have strange pain in my right arm. I have to hold my arm close to my chest or folded on my lap and my three last fingers are only comfortable in a closed position. If I open them and straighten my hand, it's like I'm stretching a rubber band from my in my middle and ring finger. You should tell your doctor you need a biopsy. They will be held liable if you lose your sight. I hope it works out for you.

[PMRpro Ambassador in reply to JManno]

"Age is not really a restriction on GCA, as people as young as 23 and 17 have got it."

You will rarely find a rheumatologist who would even discuss that concept never mind admit to it. GCA as we discuss it here is perceived to be a disease of old age that is never found in patients under 50. It is - but it is an exceptional doctor who will agree (I do know a few).

Then it is usually given a different name - there is one form of temporal arteritis (the other commonly used name for GCA) found in young patients which is not the same as the form found in older patients, it isn't a risk to sight and burns out fairly quickly.

There is a form of GCA which usually involves the lungs and other organs called Takayashu's arteritis but otherwise to all intents and purposes is identical. I do know of rheumies who will diagnose a younger patient with Takayashu's and then change the label when they get to 50.

You have an exceptional GP - there are many who will take the statements in the literature about disease incidence at various ages as gospel. I too believe that both PMR and GCA occur quite often in patients under 50 but they are not recognised because they aren't being looked for and are given other labels: fibromyalgia, ME, CFS, depression, somatisation and so on. In the case of GCA, I believe it can often present as what could be described as "PMR plus" without visual problems. But when a patient with undiagnosed GCA loses their sight or has a heart attack/stroke that kills them suddenly and it is found at post mortem it is claimed to be "extremely rare". Except it isn't really.

[mel-21 in reply to PMRpro]

Thanks for your reply. So what do you think that I'm dealing with.

Can GCA symptoms cone and goes? Does the pain gets better by messaging the effected area? How long it will give the warning sign until the finall attack? Does it effect the eye like in my case or it attacks the eye suddenly?

I really don't know what and how are the GCA''s signs or symptoms.

[PMRpro Ambassador in reply to mel-21]

I think I have replied to you before? I really don't know what it might be and I don't have the knowledge to answer most of those questions definitively - I doubt anyone does. You can google the signs and symptoms of GCA.

I don't think massage will improve GCA symptoms - there is no reason why it should. GCA generally starts and gets worse, it doesn't tend to come and go. There is no "warning sign" other than the visual symptoms we tell people to watch out for: loss of vision, even fleetingly, a sensation there is a curtain across the eye, various effects on vision. But people are different in how they present and anyone who has visual problems should see their doctor anyway - they are also signs someone might be having a stroke.

[mel-21 in reply to JManno]

Sorry to hear that dear. I know it's hard to deal with unknown and with doctors that don't listens to you. I after seeing so many of them could not convince them to even think that I might have this condition let alone to ask them for the referral to the Surgon. The pain that I suffer from recently is at the side of my neck which travels up to my head and eye then goes down to my leg and foot. The left side gets extremely painful sometimes. But I think there must be something that is happening during the pain that causes the eye sight problem.