strange experience with LLD on list

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justlearning
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 10/1/2008 6:14 AM (GMT -7)   

So, I saw the doctor A.Y. in Norwalk, CT last week.  He was someone lissted on the LLD list I was given from someone on this list, I believe.  My current situation is my western blot says 2 abnormal IgMs - 41 and 23 and one abnormal Igg - 41 - I have not had a test through Igenex. 

I have really bad pain that started in my foot and has now spread to the sides of both legs, my knees, and my hips - and beginning on my arms now.  My back is so bad I can't sit down for more than about 15 minutes or so without lots of pain.  I am fatigued and losing words.  I have been to tons of doctors who have ruled out the normal back/spine stuff, such as herniated disk and am searching for answers.

I went to see him to discuss treatment - he took a very long history so I was thinking - oh, this is great.  But then he started saying well your address in Greenwich doesn't have deer with lyme ticks - we have found them at X place in Greenwich - I told him I actually have hiked at X place many times, but that didn't seem to matter to him.  He wanted to know how many times this year I have seen a deer in my yard - which I think I haven't.  He seemed very caught up on the idea that the deer would have to be right in my yard for me to have contracted lyme -

This is because I do not remember a recent bite or rash.   I said I think 2 years ago I may have been bit by a tick - he then said - well are you sure it was a deer tick, they are very small.  When I said the only other incidence I remember was 20 yrs ago a clear bullseye rash he said - well they knew about lyme disease then so you would have been told if you had it.  He really seemed to be trying to prove to me I  couldn't have been bitten by a lyme tick.

He did an exam and looked at my blood tests - he highlighted the part on the blood test report that said "a postive IGM test alone is not recommended for use in determining active diease in perosns with illness of longer than one month duration." - (I guess my Igg was considered negative, although I did have one band.)  He basically said the tests indicated no lyme

when I said my PCP had recommended additional testing in a few weeks he said I wouldn't do that - he said he was sure based on his experience that I didn't have lyme, and he would guess it was fibromyalgia - and get this as the reason - because I was having too much pain for it to be lyme - and the other reason was he tested my short term memory and said I had a loss of that and said that is a big symptom of fibromyalgia

What do you guys think of all this?????

 


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 10/1/2008 6:27 AM (GMT -7)   

Hi justlearning.  I am not familiar with the doctor you saw.  He does not sound Lyme knowledgeable to me.  I cannot believe he said "your address in Greenwich doesn't have deer with lyme ticks - we have found them at X place in Greenwich."  To me, this is so illogical!  Also, deer ticks are not the only ticks that carry disease.  Most people do not know when they were bitten and only about 50% of people who have Lyme ever get a rash.

I highly recommend getting another opinion by a doctor who comes highly recommended.  You can email me for a doctor recommendation.  It is also important to be tested for all the co-infections.


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 10/1/2008 7:13 AM (GMT -7)   
Justlearning,
That is a crazy story! Seriously, does he think people never leave their own backyards -- or that ticks can't travel half a mile?? What I've never understood about the IgM and IgG tests is how can anyone have positive bands but not actually have lyme? I mean, you can't be "sort of" pregnant, you know? How could someone "sort of" have been infected by the lyme bacteria??
OK, enough of my rant. Hopefully you didn't have to pay much for that doc. Can you get to another one? It really doesn't sound like he knew much about lyme. Sorry you had that experience!
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


justlearning
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 10/1/2008 9:41 AM (GMT -7)   
I was also quite shocked by him - my mom thought maybe he was getting all these hyper details about where I'd lived, and a lot of details about everyone who treated me, b/c he was going to write me up in some sort of study. One thing that does continue to make me wonder however, being new to this stuff, was don't some people with lyme have a lot of pain? (he said that was one big reason he didn't think I had lyme was b/c I have so much pain)

alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 10/1/2008 9:53 AM (GMT -7)   
Yes, a lot of people with lyme have a LOT of pain. It can be nerve pain, muscle pain, joint pain, tendon pain, whatever. I didn't have pain the way some people have described it, but I had tendonitis in like 13 places at once, plus bursitis and inflammation in my hips (as my orthopedist at the time diagnosed). I would definitely find another doctor!
Lyme and co-infections since approximately 2002. Diagnosed in 2005. Treated for two years solid. Diagnosed with Lymphomatoid Papulosis in October 2007. Currently back on abx.

Moderator for Lyme Disease forum


Scooterscooter
Regular Member


Date Joined Sep 2008
Total Posts : 66
   Posted 10/1/2008 10:15 AM (GMT -7)   
If you have pain, maybe the detox baths can give some relief to start some pain relief in the meantime until you find yourself a good llmd.

Chris L
Regular Member


Date Joined Aug 2008
Total Posts : 189
   Posted 10/1/2008 11:31 AM (GMT -7)   
Frango said...
Hi there-

I don't know which Dr. you saw, but just for general knowledge for anyone looking for an LLMD I do not think the think Lyme Disease Association or some of those other online Lyme networks have a good list of LLMD's.

The first two I saw, recommended by them did not know anything about Lyme. I think they maybe attended a seminar sponsored by the LDA or something and that is how they get their names, but that doesn't mean that they practice anything other than the IDSA's guidelines.

Hope you are feeling better soon...
Amen to this!  I when to some lyme organization (very possibly the LDA) website and got a recommendation.  The doctor they recommended had no clue about Lyme and never even heard of IGenex.  Once he got my results, he took 4 weeks to call me and explain, and after talking with him, he was obviously very confused.  When I had the results faxed, I was not "CDC" positive, but I was IGenex positive.  I had three IgM bands positive and two indeterminate and two IgG bands positive and two indeterminate. 

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 10/1/2008 2:19 PM (GMT -7)   
Fibromyalgia pain doesn't usually "spread" or "wander." RSD/CRPS can "spread" and usually is quite painful, but most people with it do not test positive for Lyme like you did (IgM Positive). I believe that Lyme can be very painful, both arthritic-dominant and neuro-dominant Lyme. There is evidence for elevated IgM in chronic Neuro-Lyme. I just got back from an appointment with my Allergist, who also doesn't believe in chronic Lyme. So frustrating, since I have the same results you do - the IgG has band 41 as the only positive, and IgM is positive at bands 23 and 39. IgeneX showed more positives on the IgM and on the IgG, but none of my doctors other than my Naturopath (who diagnosed me with Lyme because he thinks one positive band is enough) believe IgeneX is a good lab.

Bottom line, I think you need a second opinion... Good luck,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).

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