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Lymeymom
Regular Member


Date Joined Aug 2009
Total Posts : 33
   Posted 9/2/2009 7:46 PM (GMT -6)   
 Lyme diagnosis 8/7/9 by general physician - LabCorp results positive for Lyme. Referred to Infectious Disease, Concord NC 9/2/9 - Dr. F and his RN were both definately not objective in my opinion. In fact, both told me they felt I did not have Lyme prior to any questions/answers or examination, etc. I was given what I felt was 'anti - Lyme' information on a 3 page typed paper downplaying the 'numbers' of cases and likelyhood of Lyme before the doctor's consult even started. According to Dr. F, my elbow joint pain (I have never before in my life experienced until this year) which radiates down my forearm and up to the 'stiff neck' was attributed to tennis elbow? Ummm...is this infectious disease or orthopedics? My headaches were attributed sinus issues because I am a smoker. My knee pain was attributed to a car accident I had in 2002. My sudden weight gain has nothing to due with Lyme. My black tarry stool is due to to much iron in my Walmart multivitamin? The digestive problems and gastritis I was diagnosed with in January of this year has nothing to do with Lyme. Because I have family history of arthritis (Lyme has nothing to do with arthritis - yeah right ) they will test for RA. It was like this doc literally explained 'away' every symptom I have. Also, my confidence in my general practitioner was undermined when I was told ' GP's just don't know how to 'read' the lab results' The RN seemed aggravated and said 'we get 3 or 4 a week in here saying '' I've got Lyme" . I was pretty pissed off by the whole thing, but they told me the test I took was not conclusive. Several more 'bands' had to show positive. The RN even said of herself "I could take a test for Lyme right now and 'some' bands would show positive from previous exposure sometime in my life, but that doesn't mean I have Lyme.' I thought that was ridiculous. I allowed them 5 small viles of blood to test...testing - 2 different Lyme tests, testing for RA, something to do with liver function, and at this point, I don't even remember what else because I am so dumbfounded by the whole thing. Excuse me....it's not like I don't 'remember' a tick bite...and it's not like the tick was not nymph stage hidden between my toes for 4 days. It's not like I have been fairly healthy during my life and 'suddenly' since I was biten appx 1 year ago I have been in my doctor's office for a multitude of problems in the past year vs. one or two visits per year in the prior 4 years. The test results will be back in on Tuesday. What in the world does anyone/everyone think about all this!?!?

rcenters
Regular Member


Date Joined Oct 2007
Total Posts : 259
   Posted 9/2/2009 7:54 PM (GMT -6)   
You'd think an infectious disease specialist would be extremely knowledgeable about Lyme, but ID Specialist does not equal LLMD.

Lymeymom
Regular Member


Date Joined Aug 2009
Total Posts : 33
   Posted 9/2/2009 7:59 PM (GMT -6)   
Obviously not..and I did have an idea of that going in but I tried to be objective myself....no need. I will be very anxious to hear of their results and recommendations. They may or may not be anxious to hear mine....LOL
I was also advised to have my thyroid checked and I need to see the dermatologist about a slow healing place on my chin that may be a cyst...and yet further advised I could by my own testing kit and test my own stool for blood. WHAT???

tickbattler
Regular Member


Date Joined Jul 2007
Total Posts : 327
   Posted 9/2/2009 8:11 PM (GMT -6)   
Just further evidence to steer clear of IDSA docs. I would get an LLMD (ILADS) asap!

tickbattler

Lymeymom
Regular Member


Date Joined Aug 2009
Total Posts : 33
   Posted 9/2/2009 8:27 PM (GMT -6)   
I am trying to get one now battler....the closest one is over one hour away - no openings till January. The one that's 3 hours away has an opening October 21.

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 9/2/2009 8:38 PM (GMT -6)   
3 hrs is not bad at all (sorry, but it's true).

If you want to be ahead of the game, you could a Western Blot done by the Igenex lab. Nearly all LLMD's use Igenex.

Good luck!

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 9/2/2009 8:43 PM (GMT -6)   
Lymeymom, I'm sorry, but your experience sounds like total, incompetent, babbling BS. Do you have copies of the tests you took? Make sure you always get copies of your labwork from here on out! Can you post them? We are not lab experts or LLMDs, but we could sure offer our ideas and opinions -- and I betcha all of us have done more research on Lyme than all of them put together!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


strongmom
Regular Member


Date Joined Aug 2009
Total Posts : 79
   Posted 9/2/2009 8:49 PM (GMT -6)   
That must be just horrible for you, Im sorry to hear youre having to deal with that. After my primary doc told me that my massive bullseye rash meant nothing because it showed up after I was having the symptoms, and my IGM41 (this first thing to show up in early lyme) came back positive on the Western Blot, and was told that is considered negative for Lyme because I didn't have certain other bands, I went looking for another doc, and got help right away with the new one.

She said Lyme tests come back false negative all the time and that waiting until enough bands come back to get a positive means waiting until the disease has progressed too far. She didnt want to take any chances waiting, because you need to treat Lyme ASAP. She gave me Doxycycline right away and said it's foolish to be unwilling to give Doxy with all my symptoms and the rash because it is even given for other bacterial infections including acne.

You should go looking for someone else to help you. Hope you find them soon. Take Care

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 9/2/2009 9:10 PM (GMT -6)   
Sorry, I have been listening to that rubbush  for 5 years now. I travel 3000 miles to see my LLMD and this last time I am not sure how I feel about his ideas. I can not afford to travel for treatment. I have had 8 CDC Positive test and have been given the run around by at least 8 oregon Specialists. It should be a crime to treat people like this.
 
Good Luck on you new battle.
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


Lymeymom
Regular Member


Date Joined Aug 2009
Total Posts : 33
   Posted 9/2/2009 9:28 PM (GMT -6)   
That is really ridiculous Really. I am sorry to hear that. It 'echos' so many stories I have heard since I began researching Lyme in July of this year. Like I said, I had an 'idea' of the stuff I was going to hear at this appt....and there it was! So, what do I do now? I have been on antibiotics since June and still not well. That was Amoxcillan, Levaquin, and either Cipro or Cephlaxin - I can't remember. Immediately after that I was put on Doxy 200 mg per day for 30 days. I finished that this morning. I am still not 'me'. I am still not well..really no 'significant' change. +Lyme and Strongmom - I have a copy of the initial test by GP but cant scan. I will try to list some info...........

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 9/2/2009 9:51 PM (GMT -6)   
Yeah, Lymeymom -- just look and see what kind of test it was and give us an idea on the results. No need to scan all the details.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


Lymeymom
Regular Member


Date Joined Aug 2009
Total Posts : 33
   Posted 9/2/2009 10:51 PM (GMT -6)   
Thanks so much to all for replies...I really appreciate your input.
Here are the results from test GP sent to Lab Corp.


IgG P93,P66,P58,P45, - absent

IgGP41 - present

IgG P39,P30,P28,P23,P18 - absent

IgM P41 - present

IgM P39 - absent

IgM P23 - present

WHAT DOES THIS MEAN???

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 9/2/2009 11:26 PM (GMT -6)   
Infectious Diseases doctors who are trained via IDSA methods have no training in chronic infections. They are only taught about acute or short-lived infections. For Lyme, one needs to seek out an ILADS doctor.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, intermittant pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, homeopathy.


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 9/3/2009 3:27 AM (GMT -6)   
your test shows up just like mine and i am CDC positive. as the lab turned it in to the CDC and the health dept. if at all possable seek out a LLMD. this is what i am trying to do right now. and the closes one i have found is almost 700 miles away.

again it shows your IgM positive, witch means you show you have a new infection going on. but this can happen even if you have had it for many yrs.

i wish you all the best.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 9/3/2009 7:36 AM (GMT -6)   
Lymemom said...
they told me the test I took was not conclusive
Apparently what you need to tell them is that NO test is conclusive for lyme! It definitely sounds like they are anti lyme when they tell you you don't have lyme before they examine you or really listen to what you have to say.  Run, don't walk to the nearest LLMD.
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 9/3/2009 7:43 AM (GMT -6)   
LMom, I do not have the test results in front of me (you can look at all the bands in the Newbie section). But 23 is species specific for Bb and 41 indicates an infection w/ spirochetes.

I guess you could start by asking your Dr WHY you would have antibodies to Lyme if you don't have lyme?!

Yep, we can't diagnose your lyme, but this definitely needs follow up.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


Lymeymom
Regular Member


Date Joined Aug 2009
Total Posts : 33
   Posted 9/3/2009 12:03 PM (GMT -6)   
Thanks for all the replies. I will keep you all posted when I get the next set of results back hopefully by 9/8/9. I am trying to get in with an LLMD.

mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 102
   Posted 9/3/2009 3:25 PM (GMT -6)   
Hi Lymeymom,

I am so sorry about your terrible experiences. I recommend getting that appointment 3 hours away. I only had two bands present IgG 41 and IgM 23. My LLMD said my WB from Labcorp is not negative, but in fact positive because IgM 23 is present. Obviously, I'm not a doctor, but from everything you've said AND your lab results, I would say that you have Lyme. Maybe you could post a question on the board for an LLMD in your specific area and see if anyone responds. You never know. Yesterday, I checked the Lyme board and at the top was a person inquiring about Dr. J in Germantown and I had just seen him that same day at 11:45. So, you might get lucky and find the right doctor by posting.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 9/3/2009 6:22 PM (GMT -6)   
I am sorry about your experience but it is typical. I went to six doctors before I got to the LLMD and he was not just three hours away. He was 11 hours one way, a two night hotel stay plus meals etc. Good luck.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 9/3/2009 7:39 PM (GMT -6)   
Just a word of note - not all LLMDs are great either. The first one I went to was kooky and recommended by lyme disease assoc. In and out in 10 minutes after waiting 3+ years to get diagnosed. Never made eye contact and did not explain anything. I switched to infectious disease dr. who has been treating for 5 months now. Not totally in tune with him either, but just a note to be on your toes with ALL the drs.

Also, my test showed 3 bands in 2006 and I was told negative. Never know any bands showed up until I ask for copy 3+ years later.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/4/2009 10:03 AM (GMT -6)   
I'll be driving 12 hours one way. LLMD's are few and far between right now so sometimes you have to do what you have to do.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 9/4/2009 11:36 AM (GMT -6)   
I just had to respond to your story.

Like the other wonderful and knowledgeable co-lymies here have said. You are lucky to have a LLMD 3 hrs away and 1hr away.

It sounds to me like this is in an area where Lyme is a problem , since he is seeing 3 to 4 people saying it is Lyme a week.

I am horrified at the negative factory they are running.

I hope you understand about co-infections.

And that if you have had lyme a long it will take a long time to heal.

You can read Dr. Burrascano's 16th addition Lyme guidelines.

There are many supportive supplements to use to support the antibiotics to kill Lyme.

There is the issue of the protective jelly like substance surrounding borrelia burgdorferi spirochetes it is called a biofilm.

You must use something that breaks the biofilm up so that the abx (antibiotics) are more effective.
Like serrapeptase.

Lyme causes Vit D deficiency I have osteoperosis at 25 cuz of undiagnosed Lyme causing Vit D deficiency.

There is so much to know like Lyme goes into cyst form which is almost inpenitrable by certain abx.

Certain abx are cyst busters though. So you have alot of choices on a regimen/protocol that will be appropriate for you.

You must eat before you abx so you dont get sick, some give up because this is not know.

The serrapeptase i mentioned is on the morning on an empty stomach though.

OHHHHH so much to know darling have fun learning, and look at that nurse and let her know she is a part of something wrong.

Post Edited By Moderator (CajunGrl) : 9/4/2009 3:49:59 PM (GMT-6)


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 9/4/2009 12:39 PM (GMT -6)   
Not all abx are to be taken on an empty stomach. You need to speak wtih you Dr. as well as read up on the abx you will be taking.

Biofilm is still a true unknown. I would not worry about all of that for now.

Get in to see a good LLMD, get a plan of action, get on abx and then you can go from there.

Too much at one time is enough to boggle the mind!
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 9/4/2009 9:44 PM (GMT -6)   
noone said to take abx on an empty stomach. i said serrapeptase
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 9/4/2009 10:03 PM (GMT -6)   
What is known about biofilms is that its presence is a big reason antibiotic healing doesnt happen quickly.

Its a protective covering. and when they get together in a colony the biofilm combines and really builds up those spirochetes in the middle of the colony balls never get touched through the biofilm balls.

A theory is this these colonies atatch to body tissue walls or even bones and some of the lesions we see in testing are spirochete biofilm colonies.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.

Post Edited (veromia333) : 9/4/2009 11:02:00 PM (GMT-6)

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