I think I smell a duck, but thought I'd ask you guys.

I've done 3 1/2 yrs total of abx, including six months of IV rocephin. Got completely well once, replapsed after the birth of my son, this past April.

This doc (ID and Internal med,) put me on Cedax and Doxy (I've never done doxy.) Flared big time with joint pain, but it's manageable now-just about to puke from the doxy =(

Went to see him yesterday for the second time. In two visits, he's never touched me or done blood work. All he has from my former doc is three pos. WB, and a slew of other pos. lyme tests. No CBC's, nothing. That is a BIG red flag to me.

He asked if "the doxy/cedax helped." DUH! I told him it made me flare, and he said to give it six more weeks, but I probably would have this (lyme)the rest of my life and just have to manage it. I asked him if that meant abx the rest of my life, and what if I chose not to do that, and he said, "then you'll have arthritis, and you're looking at pain managment" (I'm already looking at pain management.) I'm 29!! Yuck.

Then, he said if in six weeks if I was still having joint pain (I've had it since I was 12!) he would send me to a RA doc! Not that I had RA (I told him I was neg.) but that "he would have other tricks up his sleeves to get me out of pain."

What do you guys make of this?

My kids already go to jones, and we're in Houston, so traveling is out of the question. The choice of docs in Houston is so limited, and for those who live here, I can't see Dr.S, as I wasn't a former patient.

Any ideas?

My rheumatologist, whom I went to to investigate Raynaud's syndrome, diagnosed me with CFIDS (which I do have) but then when my mom, out of curiousity, asked about Lyme, he said "no, her symptoms are more consistant with Fibromyalgia/CFIDS, not Lyme."

I now know how ridiculous that statement is, seeing as I have both CFIDS and Fibromyalgia that were caused by Lyme, and many symptoms are overlapping.

Rheumatologists are not equipped with the proper knowledge in treating, diagnosing, or in some cases even recognizing possible Lyme.

And I'll add that my rheum lists on his business cards "Lyme" as one of the things he specializes in.

I'm sure there are some LL rheumatologists, but make sure if you go to a rheum they are one of few versed in Lyme.

Sorry I can't offer much advice as to alternatives.

take care!

He also assured me I didn't have Lyme, since I am seronegative. I was so comforted to know that. NOT!!!

He didn't know who he was dealing with. I queried "so what you are saying is that I trade my abx for pain mgt. meds which have the same or more side effects, or for possibly narcotics?" He gave me a blank stare, and I never returned to him.

Seeing that I was misd'xd with both CF and Fibro which resulted in the passing of lyme to my daugter, I think I'd have a hard time keeping a strait face (and my hands to myself!) at any doc that told me that was my problem.

Like you said, I know I have these things, but I also have a million pos. WB and 3 clinical dx's for Lyme Disease. I think my CF and Fibro are merely symptoms of this horrid disease.

I live in Va. and see an LLMD in NC. He has tried many things with me, but my case is complicated with Lyme, Babeseosis, Fibro, RA and Lupus and he is just not sure of what to do with me.

I continue to get worse again and cannot afford a further trip from home, but have got to get some help before I end up bedfast. I feel so close to that lately.

I'm scheduled to see Dr. C. in Missouri on November 10th. I don't have money so Angel Flight has agreed to take me there and bring me back. They will let one person go with you. They don't charge you a penny.

So if money is an issue, this is an option for you. Do you have a Dr. there who would be willing to go along with Dr. C.'s treatment recommendations? If so, you could probably get by with only going to see him every 6 months.

Feel free to e-mail me. I will try to help you if I can. Make sure to write Lyme or Lymenet in the subject line so your e-mail isn't thrown away.

God Bless You,

Thank you!

I emailed you privately.

Take the advice of hundreds, if not thousands, before you, and NOT see a Rheumy for Lyme Disease (LD).

I was two before I finally got my diagnosis of LD. One was at the Mayo in J'ville, Fl, and he said I probably had RA since 20% have it and test negative. NOT, I have Lyme Disease and Lyme arthritis.

The other, not knowing until I saw him, was considered one of the best in the entire state of Florida in private practice, was a former teacher of the one I saw at the MAYO.

His dx for me was Palendromic Rheumatism...I'm still Rolling on the Floor Laughing out loud (ROTFLOL)at that one.

Save yourself time and money get a good referral to someone (a real LLMD) with happy customers (patients).

Seriously, avoid a Rheumatologist like they have the plague!!!!! What you have is Lyme Disease and needs to be treated as such.

Most Rheumatologists are notoriously bad when it comes to Lyme. They tend to see everything as arthritis or autoimmune in nature. They will recognize ``post Lyme syndrome'' but they are not very proactive when it comes to treatment.

You need a doctor who understands or is willing to learn how to treat you properly. You need a doctor who has the goal of helping you get well as opposed to the common mindset so many auto-immune docs have of helping to make you comfortable because he believes your disease is incurable and he can only hope to slow it's progression.

I know I'm stating what you and everyone at Lymenet already knows, but this is a mindset that makes these doctors very bad news for us. I know that you have stated that you can't travel. Still, within the state of Texas we have some very good LLMDs. Is there anyone from your local Lyme support groups that you might be able to car pool to one of these doctors?

I was in the position of having to travel for years. I was fortunate enough to be able to find a friend or relative to accompany me. We would usually try to book appointments on a Monday so that we could drive in on a Sunday and be a bit rested. Monday appointments allowed for important lab work to be completed during the visit. Once I was an established patient, my doctor allowed me to travel quarterly and he gave me authorization allowing me to have my important lab work done locally at a satellite office near my house in between visits. The trips actually became fun because they weren't so frequent that they killed me. I even got to connect with old college friends who insisted that I stay with them during visits. That was really fun.

Perhaps if your out of town visits were in Texas a friend or relative could help you with your children while you were able to carpool and share expenses to a recommended Texas LLMD. I'm sure that Dr. H has other former patients who are now forced to travel and my find ride/expense sharing helpful.

If that doesn't work, you might try to find an Osteopathic doctor (D.O. versus M.D.) near you who is open to learning about Lyme disease. I've had good look with finding DOs (Osteopaths) who will listen because their training is often times more holistic in nature. They don't always have the same biases as M.D.s. One of my favorites used to give me adjustments that really helped. I have a friend who sees one who prescribes Crainial Sacral and Massage treatments that are covered by her insurance when she sees him.

I don't know how these docs can look at my 14 month old sone at my appts, and tell me I'm having an auto immune response. He tested pos. at 6 mo by way of PCR. He's hypotonic.He sure hadn't been camping, and no, there was no tick! LOL

He did, at this last appt. mention steroids, and I said NO. That's when my feelers went up.

This guy said "it's not in your blood anymore." Then how, in the heck, is it in my sons, despite my abx during pregancy?"

I would like to go to Austin to an NP- the only hangup is childcare- we don't have family in town, and all our friends have jobs or their own children and lives....

I have heard of a Dr. H in my old LLMD's group that is actually an oncologist, that some people like. I have an appt. with her in Dec. If that doesn't work out, I guess it's off to Austin.