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I am asking for input as I question my judgement today. I went to a recommended (LLMD?) last week near Atlanta. She is nice enough. During the exam she told me the CD-57 HNK 505026 is non-specific. (MY score was 80). I showed her some info about the test. She told me during the exam she would treat me with IV Rocephin regardless of the test results, western blots and co-infections. Today I spoke with her and she said all the tests were negative, and she wanted to refer me to a rheumatologist. I told her during the exam I have had four rheumys and don't want the immune suppression. No rocephin, I talked her into a couple of weeks of doxy. Now I am going to do what I should have done all along and get the test at Igenex. If that falls short I will be at a crossroads. I have stayed off the mino for about a month now trying to give the tests any and all chances to be productive. BTW- she did give me one meaningful morsel, my crp was 6.1. My knees are as swollen as ever, and I have allot of fatigue and stiffness in my neck is lately prominent. Somedays this journey is tough. Thanks in advance for anyone who can share similar experiences and give me some insight. Jim
Jim, no insight, no experiences, just wanted to say hello and I'm keeping you in my thoughts and prayers. I'm sure all these smart people on this board will chime in…Take care,
MichelleJim,
There are other LLMDs out there. I worry a little about the comment that she said she would give you IV Rocephin regardless of co-infections, etc. Perhaps it is taken out of context and she meant that she would treat aggressively? What you really want is an LLMD that tweaks the protocols according to how you respond and possible co-infections. Someone who follows a Burrascano style protocol. A lot of these doctors are trying to stay under the radar so sometimes when they see more complicated cases they may just decide to pass them off to a rheumatologist rather than risk treatment failures and possible censure.
I know my husband's LLMD had never seen a case like his. He may not have believed in the beginning that he could make the progress that he did and he always wanted my husband to have a rheumatologist on the side. We grudgingly found one and it eventually worked out for us only because we were able to get him to prescribe IVIG. Other than that the rheumie had nothing to offer us.
Don't be discouraged for long. Perhaps she's not a good fit and it's beter to find out sooner rather than later.
Jim,
I agree with Parisa completely–try not to get discouraged by your experience with this particular llmd. I think the most important thing is to find one who customizes treatment to you individually. I know this whole process can be extemely frustrating– a lot of times it seems like we take one step forward and two steps back. I don't think there's a blanket protocol that will help anyone, and sometimes you need to have more than just 1 doctor to manage your condition, particularly if it's complicated. I have a rheumy, an ND, an LLMD and an Internal Medicine doctor. I wish I could package them into one person because it would sure make my life easier but, I've found that this works for me right now because I want each individual person to concentrate on what they are good at. My llmd doesn't deal with Scleroderma, and my rheumy doesn't deal well (at least to my comfort and satisfaction level) with Lyme disease. My IM doctor does my monthly blood tests for my rheumy (since he's out of state), as well as signs off on my iv's, and prescribes my Minocin. My ND looks at things none of the doctors will consider. You're on the right path to get tested to see what your next step should be. If Lyme is in the picture for you, it requires different antibiotics than just the Minocin or Doxy. I, too, had VERY stiff knees and my neck always hurt. It wasn't until I started taking the lyme meds that I noticed a considerable difference in my body. I have virtually NO pain in my knees, and my neck is looser than it's ever been.
Hang in there–this isn't an easy journey by any means but, you will get the answers you need to make the right decisions for youself. I can so relate to what you're going through, and I'm sure there are many others who can as well.
Maria
To Michelle, Parisa and Maria, thanks for the kind words. It means so much when I know, that you know, what I mean. Does that make sense? I won't stay down long, I will start focusing on the Igenex test. There is a large part of me that wants this to be lyme so I can concentrate on fixing something. I thought having my blood sent to a famous clinic ( four letters, begins with an M and ends with an o) would be as good for lyme and co-infections as Igenex. My Gp scolds me and says I play intellectual games and have too much pride to admit it is not lyme. Wow, a part of me REALLY wants to prove her wrong, and if that's not being objective so be it. One thing for sure there are allot of persistent folks on the RBF site! jim:)
[user=1054]jims[/user] wrote:
I am asking for input as I question my judgement today. I went to a recommended (LLMD?) last week near Atlanta. She is nice enough. During the exam she told me the CD-57 HNK 505026 is non-specific. (MY score was 80). I showed her some info about the test. She told me during the exam she would treat me with IV Rocephin regardless of the test results, western blots and co-infections. Today I spoke with her and she said all the tests were negative, and she wanted to refer me to a rheumatologist. I told her during the exam I have had four rheumys and don't want the immune suppression. No rocephin, I talked her into a couple of weeks of doxy. Now I am going to do what I should have done all along and get the test at Igenex. If that falls short I will be at a crossroads. I have stayed off the mino for about a month now trying to give the tests any and all chances to be productive. BTW- she did give me one meaningful morsel, my crp was 6.1. My knees are as swollen as ever, and I have allot of fatigue and stiffness in my neck is lately prominent. Somedays this journey is tough. Thanks in advance for anyone who can share similar experiences and give me some insight. Jim
Hi Jims,
You've had some terrific replies already and I don't have much to add, except to share what came up as I read your posts…
You know what raised my attenae about this LLMD's assessment of your case? I think it's that the more experienced LLMDs know that Lyme is a clinical diagnosis and not one that is reliant on labs. Also, that she didn't use the IGeneX labs in the first place to at least see if anything might provide some further clues. Although a person with chronic Lyme can be very immune-suppressed and not produce enough antibody to test positive on any significant band, it's still worth running an IGeneX Western Blot just to take a look-see to see if it can provide some additional info to at least point to Lyme. With a CD57 test of 80, you're not horribly immune-suppressed (A very good thing! Some folk I've spoken with have had numbers down in the 20s and 30s), but a number over 100 surely would be better.
Sometimes LLMDs, as Parisa said, request that a patient also see a rheumatologist for a full work-up, because rheumatology may not be their field and it's good to have some kind of work-up to see what you're dealing with. However, it also gives pause for wonder as to why this LLMD did this in your case as you've already been this route. 😕 So, I have to wonder if she was palming you off? Is that how it felt?
Experienced LLMDs are all for doing therapeutic probes when the symptoms are a match for Lyme (regardless of tests) and with a stiff neck and swollen knees those are pretty classic indicators. So a few weeks of doxy doesn't really qualify in that catagory. Perhaps, as you are pondering, the next step is to get your IGeneX labs run and see if anything shows up to possibly give you some clue as to whether you're dealing with Lyme and then put this last doc visit down to experience and move on. Frustrating, but sometimes we just have to kiss a few doctor frogs before we find the right one. I was just speaking with a Mom of a young one with JRA and she went to two docs before hitting on “the one.” One of her frogs was the most experienced pediatric LLMD in the US, possibly the world…but Lyme is so political right now that some docs just aren't willing to stick their necks out too far.
Hope this helps…it's such a confusing mess this whole Lyme thing. :doh:
Peace, Maz
Maz I knew I could count on you. Yes I felt ditched when the tests came back all negative and she changed her mind (I knew she might), I am not angry with her as I realize this lyme dx can be risky, and without any testing to back her up she carries more potential liability. She asked me if I had an exposure. I told her I was bitten many times as a child, playing in the woods in Arkansas for days on end. I remember one instance where I had five or six on me all dug in. When you are a 10 year old boy in the summer time bathing and looking for ticks is afforded time only when forced by your mother. Running up and down the creek, fishing and going on all day adventures took all my energy…. Back to reality. I asked for the doxy because as of yet I haven't tried it, and thought after over a year on mino maybe the small/short change up might be productive. Now I am wondering who is qualified to sign off for the Igenex tests. I really don't want to ask my GP, and take that thrashing. I have a friend that will do the blood draw. As always, thanks Maz. jim p.s. I like the doctor-frog scenario, sometimes I feel like its more like doctor-toad.
Hi Jim,
What Maz said is most likely why you're getting the caution from this LLMD.
I was just speaking with a Mom of a young one with JRA and she went to two docs before hitting on “the one.” One of her frogs was the most experienced pediatric LLMD in the US, possibly the world…but Lyme is so political right now that some docs just aren't willing to stick their necks out too far.
That is shocking when the best in the country has to be cautious. He's under such scrutiny it makes me sick. I am grateful for those LLMD's who will take us on, even when tests are not positive.
Don't get discouraged, just keep following your instincts, because they are there for a reason. Just know, that this is a journey, and you are in charge of your health. Many of us have walked in your shoes, and know how frustrating it is to find the right mix of doctors and tools to get ourselves well. :headbang:
My recommendation is to go through with Igenex testing, and have the kit sent to you. Any doctor, including your PCP can sign off and draw blood. The only problem with having someone you know draw blood, its that they must spin the blood before sending it off. I'm surprised this LLMD took the results of m__o, and did not request you pursue further testing through Igenex. That doesn't make sense. I tested negative through Igenex, and required an additional 31 eptiope test to confirm diagnosis.
Also, you don't necessarily have to stay off abx pending testing. It didn't make any difference with me, and often is used to increase the chances of testing positive. You could call Igenex and ask, just to be sure. Maybe this LLMD could start you on something in the meantime, and see how you respond? Often this is a way to test to see if you have lyme.
Welcome to the quagmire of lyme:doh:
nancyMy last rheumy was recommended by my pain doctor. She said this doctor would “think outside the box” concerning my Lyme. I said that to him and he said maybe I should get back in the box, as he didn't think I had Lyme.
Always carry small boxes to doctors, easier to throw in the trash ~ in the box or out of the box: some don't know what they are doing or some don't want to find out about Lyme.
It can take awhile to find the right doc, much better than getting started with the wrong one. Also, your instincts usually kick in when you are not in the right place.
Just my two cents…
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