posted
I am a little confused about my visit with my LLMD. I haven't seen him since 2001 cause all has been fine till this year.
After he looked at my test results, he said that the Western Blot will always be positive since I had lyme before and that it wasn't a good test to show a relapse. He was more into the Elisa which was High Positive (1.30) . He said that test would go up and down as well. It seems like he steered far away from the possiblity of a Lyme relapse even without listening to all of my symptoms. He only got a couple of the symptoms from me. He was most interested in the pain that I am having in my smaller joints (fingers & knuckles, toes & feet) even though I have pain in the bigger joints too. He said lyme would be more localized in specific joints rather than in both of my hands and in several different places at the same time.
He is doing a 8 different blood test to check for the possibility of different auto immune diseases. He gave me an anti-inflammatory (Mobic). I guess I will wait to see what all the tests come back saying. Some of these I have never have so I guess it doesn't hurt to see what comes up. Maybe he wants to rule all other possibilities out before considering Lyme again.
I am still on the 100 mg of Doxy I got from my PCP (3 week supply). He said to continue with that as a precaution.
Is this normal? Or could he now be one of the doctors who is scared to treat because of treatment guidelines & insurance companies?
I am just so scared of getting to the point that I was back in 2001 before I got treated.
Any input would be much appreciated.
Tara
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I think he was being cautious in trying to rule out other things before considering a relapse of Lyme. After all, he hadn't seen you in quite some time and people change a lot in 5+ years.
I would give him the benefit of the doubt and see what he has to say further..
posted
Can you talk a little about these autoimmune tests? I am thinking about having my LLMD test me for autoimmune stuff at out next visit. I think it's good that he is doing them, you never know.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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quote:Originally posted by Lymetoo: Autoimmune? RA...... I think he's bailing on you.
"RA" can be successfully treated with antibiotics in most cases .. if not ALL.
Though I'd wait to see what he says after the tests, I tend to agree with Lymetoo. I find it odd that he wouldn't listen to all your symptoms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Itsy_bitsyone
Unregistered
posted
After having Lyme for many years, I can tell you honestly that it does progress, at least for some people, into frank arthritis. I'm pretty sure that I read that it is a rare symptom of late stage, but occasionally does present. Actually, I got dx'ed with Lyme because my arthritis had a bad flare after pnemonia a few months ago, and the current GP doc tests lyme when he does an arthritis profile. My titer was 2.97 or something like that. He was like "WOW I've never seen one THAT high...at least we know its not a false positive!!"
Mine started in my wrist (1982). Then, my hip(1989). Then, my shoulder(1995). Eventually, my hands, knees, fingers and toes.( starting in 98)
Sometime during that time, though I'm not sure when, I ended up with degenerative disc disease of the cervical spine as well. That was dx'ed in 2001 (I think) though I am sure it was there longer.
That being said, my grandmother started osteoarthritis in her late 30's...so I could have that with Lyme. Its like having pie AND chips!!
So, Consider your family history as well!
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That is interesting you mentioning the Cervical Spine Problems. I was having a doozie of a problem last year. They finally did an MRI and found that my cervical spine had desication of the dics and the I had a small herniation of one of them.
Lymetoo is RA Rheumtoid Arthritis? I don't think he referred to it as an auto immune disease, but a couple of the test he is doing is related to auto immune diseases. Unless I miss udnerstood him.
He is repeating a few that my PCP did last month:
Comp Metabolic Panel CBC w Diff w Plt Sed Rate, Westergren Antinuclear Antibodies Rheumatoid Arthritis Factor
Thanks for the replies. Just wasn't sure how to take it. He is very old fashioned. But is very reachable and said he would most definitely call me as soon as he got the results.
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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When I first got my lyme symptoms I started getting joint pain in my left pinky (I know odd). I know how it symetrical and in both my hands, fett, and knees. I personally think its just the lyme. Your doctors probably just covering all bases before starting treatment.
Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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posted
When i first decided to pursue my symptoms, I went to a rheum who ran a full immune panel on me. It was 8 vials of blood and some urine. In addition to your basic CBC, she also ran tests for sjogren's and lupus, as well as lyme.
Posts: 22 | From Texas | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I think it sounds like he is a good doctor. I know my old LLMD would always run everything and if you are having autoimmune markers show up he would treat in a different way!!!!!!!!!! So I think he just sounds thorough- hopefully*)!*)!!
I'll cross my fingers*)!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Boy, I see red flags all over the place.
NOT, mind you, with his battery of tests. He should be thorough.
However, he didn't listen. That's very un-LLMD like.
What lab did he use? Why did he use an ELISA? Most LLMD's don't even use those. What would he have said if it had been negative, as most are in later stage lyme?
What about co-infections? Tests for co-infections?
I have never heard you would stay positive on a western blot forever -- possibly IgG, but certainly not IgM.
The symptoms you are having are extremely lyme-ish. Having had it before, with repeat symptoms and new positive tests, it seems like it would be a stretch NOT to call it a relapse.
This doctor is an ILADS member, right?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
****Lymetoo is RA Rheumtoid Arthritis? I don't think he referred to it as an auto immune disease, but a couple of the test he is doing is related to auto immune diseases.**** Yes....
I have arthritis....from Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by Michelle M: Boy, I see red flags all over the place.
---------------------------------- The symptoms you are having are extremely lyme-ish. Having had it before, with repeat symptoms and new positive tests, it seems like it would be a stretch NOT to call it a relapse.
I agree.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Itsy_bitsyone
Unregistered
posted
Just as a point of interest...
When I spent several years misdiagnosed as sjogren's, I came across some very interesting information from a study done in Canada that proves that a TRUE autoimmune process does exist. Now, I am in agreement that many autoimmune dx's are probably long term infectious processes. HOWEVER, a very neat study (which of course was halted by removal of funding, so you KNOW they were onto something...pharmacutical companies wouldn't want a cure for those chronic illnesses either, if that doesn't sound to conspirital!) was done on mice.
They found that they could both produce and cure Sjogren's in Mice. It has to do with a genetic marker of some sort, maybe I can find that link again. In any case, if you have a particular genetic marker, your body produces a certain type of protien. Different antibodies can be triggered by an accident, a trauma, an illness like the common cold, that will then attack the protien, which exists in certain glands and tissues in the body. In Sjo, its those SSA/SSB antibodies they test for. WHen they activated the gene in mice, they created Sjo. When they deactivated the gene, the mice got better.
They are pretty sure they can isolate the protien responsible for rhumetoid factor antibodies and antinuclear antibodies they may be able to cure autoimmune disease with genetic theraphy...alternatively, they will be able to tell which is an actual autoimmune issue and which is a result of infectious disease.
That being said, I firmly AM sure such conditions exist outside infection. It makes me more sure just knowing that they had to get private funding after finding this!!
If I can find it, I will post it. Very interesting stuff.
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Itsy_bitsyone
Unregistered
posted
Ps.
This is an article about it, but not the exact one I read before. Cannot seem to find it!
posted
My llmd is Dr. B in Lutherville MD. His name was given to me the first time around as an LLMD. Can't remember how I got his name back then.
This time around, I didn't get his name from the ones I got from the ILAD's website but his name was given to me by someone on this site as an LLMD along with a bunch of other names. I think mbroderick is the person who gave it to me.
I guess I will see what he comes back with and if I am not comfortable with what he has to say, I will look into another doctor. Unfortunately, none of the other doctors take my insurance. Hopefully I can at least get 80% covered since they would be out of network.
I did send his office a fax stating that I felt my visit, especially with how long of a drive it was, felt incomplete because I didn't get to inform him of my past symptoms and how they have changed to what I have now and my top complaints today. Here is part of what I sent:
It initially started in my left hip for a while and then it changed to a problem with my right shoulder and now it just seems to be all over but especially in the finger joints, wrists, feet and ankles on both sides.
I have also been having:
1. Facial, hand and feet swelling upon awakening, sometimes it fades later in the day, sometimes not 2. Low grade fever a lot of the time 3. Border line high blood pressure 4. Sleep disturbances - I wake up still feeling like I need sleep 5. Bladder issues - leaking easily with laughing/coughing, getting up 2-4 times a night to go even if I don't drink hours before bed time 6. Feelings of severe Anger/Rage 7. Daily exhaustion 8. Episodes of Vertigo 9. Trouble with speaking fluently 10. Word fining problems
Boy it really sinks in that something is wrong when you sit down and actually think of all the things that are bothering/hurting you.
Any way, as always, thanks for everyone's input and advise. I just feel so anxious and impatient, guess because the pain is getting stronger every day.
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I agree with Michelle and tutu, I see red flags.
What about co-infections? Have you ever been treated empirically?
As far as autoimmune, 2 lyme doctors that I know of have said that lupus can be induced by an active lyme infection. I've no doubt that other autoimmune problems can also be induced by lyme.
I would want a doctor who listened carefully and treated empirically if I were in your situation.
Sounds like you have good common sense about this and will seek another doctor if this one does not act appropriately.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
In my opinion, number 1 is the only symptom that COULD indicate RA. (but could definitely point to Lyme) All of the others point to Lyme.
"1. Facial, hand and feet swelling upon awakening, sometimes it fades later in the day, sometimes not 2. Low grade fever a lot of the time 3. Border line high blood pressure 4. Sleep disturbances - I wake up still feeling like I need sleep 5. Bladder issues - leaking easily with laughing/coughing, getting up 2-4 times a night to go even if I don't drink hours before bed time 6. Feelings of severe Anger/Rage 7. Daily exhaustion 8. Episodes of Vertigo 9. Trouble with speaking fluently 10. Word fining problems"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Sadly enough, I have never, ever been tested for co-infections. I have asked but it always seems to be pushed aside by both my PCP & LLMD.
When I had such a long and painless remission, I also assumed it was just lyme.
Just wish there was a way for them to know if it was a relapsing infection or a new infection.
Seems ridiculous they haven't gotten any further with reliable testing in 7 years!
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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posted
Well my LLMD left me a message saying that my all of my tests came back normal.
Didn;t say to call him, just said I hope you feel better.
Now what!!!!!!!!!!!!!
I could scream.
Tara
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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tailz
Unregistered
posted
I would find another doctor - he has evidently gone political and decided to deny chronic Lyme.
If you are going autoimmune, you have INFECTION - whether it's Lyme or one of these other bugs.
They were getting ready to dx me with myasthenia gravis, because my anti-striatal muscle antibodies were equivocal (borderline positive).
Basically, I had antibodies to smooth (involuntary) muscle like my heart and lungs.
I would find another doctor. I don't care if you've seen him daily or once every decade - if you had Lyme years ago, you still do.
I would have eventually died of respiratory failure had I developed anti-acetylcholine antibodies - my brain not being able to signal my lungs to expand and contract.
I think it's significant that WOMEN are more likely than men to develop these 'autoimmune' syndromes. It's obvious to me that PARASITES wanting to reproduce would select women over men, but apparently our male-dominated medical community hasn't figured that out yet. Pretty sad. I personally think there needs to be a major gender shift in medicine really soon.
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posted
thanks. I am just so disappointed. A couple of people have contacted me via PM so I will see what I can do.
This just really sucks.
Thanks to everyone for your support and replys! It is nice to be able to come to a place that other people truly understand what you are going through.
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
YIKES!!!!!!!!!!!!!!!!!!!!!!!!!!!
DOUBLE YIKES!!!!!!!!!!!!!!!!!!!!!!!
Get another doc asap!! Sorry to read it!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Dizzyygirll: Well my LLMD left me a message saying that my all of my tests came back normal.
Didn;t say to call him, just said I hope you feel better.
Now what!!!!!!!!!!!!!
I could scream.
Tara
HUH?
I presume what that means is that all your other tests were normal.
Your LYME test was NOT normal. You had a high positive ELISA. An ELISA, yet!! Your symptoms scream "relapse."
This is not an LLMD.
I'm so sorry that you're disappointed. No matter - at least you'll have those other tests out of the way and can hand them to a REAL LLMD when you finally meet one.
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Dr L is also in Lutherville - is a very good ilads doc and will hear what you say.
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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Vermont_Lymie
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Member # 9780
posted
Yes, get yourself to a real llmd soon! A new doctor, that is. Sorry you had to go through this!
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