Advice needed regarding RA and Lyme’s

[jlynne]

I have been reading and reading in the forum. Some of the posts have got me thinking I might have Lyme’s in addition to RA.

Just a brief summary, I received labs back that my primary physician said indicated RA. I was referred to a rheumatologist but since have found this site and am going to an AP doctor on Jan 25th for my first workup.

I went to my primary doctor and she gave me a prescription for minocycline 100mg 2 times per day. I decided not to take it just yet because I have read where it can make labs look worse and I want labs that determine what my current condition is.

I changed my diet to no sugar, wheat or dairy. Added, Flax oil, Vitamin D3, tumeric pills, ginger root pills, eat an anti-inflammatory diet and have to say since I started, I have had only minor aches and pains and no major flares…except since this past weekend, I have had a sore, stiff neck. I can’t seem to get rid of it. It’s not in the cervical column, its in the muscles of my neck. Stretching and moving it helps but it comes back.

So I google sore neck and that and reading here, I suspect lymes. I looked at all the lyme’s symptoms and I have a lot of them. Thinking back, I was in the mountains about 2 years ago and had a tick on me. I brushed it off me as it wasn’t attached and didn’t think anything of it. I never had a rash but a couple of days later I was so sick with a high fever and flu like symptoms. Went to the dr. They cultured my urine, gave me antibiotics and sent me on my way. Culture came back as an e coli infection.

Since then I just haven’t had the get up and go that I use to. Then in October started experiencing joint pain in hands and wrist and dr. ordered a rheumatoid panel which brings me to today.

I have my first appointment with an AP doctor on Jan 25th. I would like to have him test me for lymes also. I am from Wyoming and he is from Denver, Colorado and am hoping he is familiar with tickborne illness but if not, what test should I ask for? Also is there an LLMD near me? I am willing to travel to Montana, South Dakota, and Colorado to find someone to treat me if it does come back that I have lymes.

[Maz]

@jlynne wrote:

I have my first appointment with an AP doctor on Jan 25th. I would like to have him test me for lymes also. I am from Wyoming and he is from Denver, Colorado and am hoping he is familiar with tickborne illness but if not, what test should I ask for? Also is there an LLMD near me? I am willing to travel to Montana, South Dakota, and Colorado to find someone to treat me if it does come back that I have lymes.

Hi JLynne,

In order to get tested for Lyme through IGeneX labs, you can just put a call through to the lab and have them mail you a testing kit. The basic western blot test is test #s 188 and 189 (two part test for IgM and IgG) and it’s about $200 out of pocket unless your carrier will allow you to put in a claim for it, as some do. The kit comes complete with all the paperwork, instructions, packing materials for the blood sample and return mailer. So, you just fill out the paperwork prior to your appt, have the doc sign the lab req (results get returned to ordering doc in a couple weeks and important to get a hard copy even if doc says results are neg), and either have the doc or a local blood draw place draw the sample and pack it for you as per the instructions. Then, just place paperwork, sample and payment in the return mailer and drop it off at your local FedEx drop-off point. Best to get sample drawn early in week, so blood doesn’t degrade in mail over weekend.

http://www.IGeneX.com

Very sorry to say that LLMDs are very slim on the ground in the mid-west and there is nothing listed for South Dakota or Wyoming…the other two states have a couple LLMDs, but we’ve had no feedback on their experience level and whether or not they are actually ILADs-affiliated/trained. The best LLMDs are located along the west and east coasts…can you travel to these locations by any chance? I’ll send you a PM with what we have listed for Colorado and Montana, JLynne. 🙂

You’re wise to check into the Lyme angle, because treatment of tickborne infections does vary significantly from low dose monotherapy for AP. However, minocycline is a bona-fide treatment for both RA and as a central mainstay for Lyme treatments, so once you get your baseline labs run, you should be set to go while you wait for your Lyme labs to be returned. We have some links to help you interpret your results, so be sure to get your hard copy as some bands are highly specific for Lyme and can provide very good leads as to which treatment path to pursue.

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