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» LymeNet Flash » Questions and Discussion » Medical Questions » Help!! Newbie here with Lyme test results

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Author Topic: Help!! Newbie here with Lyme test results
Peyjad
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Please help me understand my lab results. I am new to this and want to find answers. I JUST got my Lyme test results today and I was told I am negative. (All my symptoms point to lyme disease) the Lyme Ab test is : Lyme AB: equiv, negative; Lyme ISR: 1.010 with expected results 0.000-0.900; Lyme IgG/IgM Ab: equiv. So they did the western blot which says ALL bands are nonreactive in Lyme IgG WB, but the Lyme IgM WB is reactive in 41 KD IGM band only. Please give me advice, would you persue llmd? Thanks for your help!
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massman
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Lyme is a clinical diagnosis.

That means positive tests are NOT required to make the diagnosis. Many docs seem to think otherwise.

Access Dr. B's symptom survey with a google search, take it and see how you do.

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steve1906
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Hey Peyjad,

Sorry to hear you're sick! Can you tell us what your symptoms are and how long you've been sick?

Thanks,
Roy

--------------------
Everything I say is just my opinion!

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steve1906
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You also need to brake up your sentences. A lot of people here can't read long paragraphs.

Thanks,
Roy

--------------------
Everything I say is just my opinion!

Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Peyjad
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Hi everyone! 7 years ago I found a deer tick in leg. Thought it wasn't in long enough and never got a rash. 4 years later I noticed pain when standing in the morning in my feet. I can't say for sure if there was other symptoms until January 2008.
Than everything broke loose:

Dizzy for 3 weeks
Flu like achiness
Ear fullness and popping
Buzz sensation in head
Sensitive to sound
Medicine head or foggy head

This gradually got better and disappeared by late summer 2008

Than another episode 7/2009 with the following symptoms:

Mild dizziness for a day than
Ear pain, fullness and popping
Sensation of stuffy sinus
Trouble reading, jerky eyes
Post nasal drip
Foggy head
Sensation of Pressure on nose
Crunching and grinding noise in neck
All I am left with from this episode is ear and sinus symptoms
Occasional dizziness when I look up, and crunchy sounds in neck.

I was diagnosed yesterday with vitamin d deficiency. All other blood work and a sinus CT scan are all ok. I have been told I have Eustachian tube dysfunction, TMJ, sinusitis and allergies.

Thanks for taking the time to read this!

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steve1906
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Hi Peyjad,

I think your question is should I see a LLMD? It never hurts to see an LLMD when
No other doctors can answer our questions.

So yes, I would see an LLMD.

Good luck,
Roy

--------------------
Everything I say is just my opinion!

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IckyTicky
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wow... def. Lyme symptoms. I've had all those and more. BTW.. EVERYONE has a Vit. D deficiency.

You need to find an LLMD for sure.

--------------------
IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND
IGG: 31+, 39IND, 41+
Also positive for Mycoplasma Pneumoniae and RMSF.
Whole family of 5 dx with Lyme.

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Peyjad
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I forgot at least one...

heart palpitations

Like I said, I don't remember too many symptoms prior to 2008. Maybe it was 'just a tick' in 2002. (although it was teeny tiny, and I'm 100% positive it was a deer tick)

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sutherngrl
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Definetly see a LLMD. I only had IGM band 41 in the beginning, then later after a year of treatment tested again and got band 23, which is very lyme specific.

Lyme is a clinical diagnosis as someone has already mentioned. The test are very inaccurate!

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Shosty
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In your case, I would not see an LLMD as first choice.

I would look into those sinus/eustachian tube issues, which can explain the dizziness.

Also have an MRI of your neck if possible, and see someone about that. Neck issues can cause dizziness, because there are nerves in the neck that have to do with balance. Did you have whiplash or do you have osteoarthritis?

The jerky eyes can also come from the neck. Look up cervical vertigo.

That said, you could try antibiotics to see if they affect your symptoms. But I would not commit myself to a longer-term regimen of several antibiotics, because it is very possible that your symptoms have other causes besides Lyme.

I have some of your same symptoms by the way, and I still have them even though I did 6 years of antibiotics.

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steve1906
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I too have most of those symptoms + many more.

My feeling on taking antibiotics> if you don't feel better after 3, 4 or even six months then you will feel the same after 6 years.

Roy

--------------------
Everything I say is just my opinion!

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Peyjad
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thank you everyone! I am going to try to process all of this. I agree with you shosty- I told myself once I got these results back, I would look into an allergist and chiropractor. Thanks for the advice everybody!
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Lymetoo
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I would at the very LEAST pursue another Lyme test.. like from a good lab!!

Igenex is the best lab for Lyme testing.

www.igenex.com TEST #188 and 189

Go to Seeking a Doctor here to find an LLMD in PA.

I would NOT ignore band 41!!

READ this link .. esp the replies to it. There is one in particular that discusses band 41.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

Lyme disease symptoms list:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386

--------------------
--Lymetutu--
Opinions, not medical advice!

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Peyjad
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Thank you lymetoo! I will check it out!
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Elaine G
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You mentioned pain in feet? Where in the feet? Do you have pain in the soles or heels? Does the pain go away after walking around after waking?
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Peyjad
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It's like my feet hurt when I get out of bed in AM until I walk around a minute or two. They're stiff like.
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Pinelady
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Low Thyroid probably too. Yes I would seek LLMD.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Peyjad
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You are all SO helpful, I appreciate all the advice! Please keep giving it to me! [Smile]
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Pinelady
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Low body temp? Most lyme cases on avg. are a degree or 2 below normal.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Peyjad
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I haven't noticed low body temp. My feet are almost always cold and my house temp is 73deg and sometimes I'm freezing
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Elaine G
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Peyjad,

One of my symptoms was pain in the heels/soles of my feet upon waking in the morning. Once I walked around, it resolved itself. It also felt like my feet were very stiff with that first walk of the day.

I later found out this was a symptom of Babesia, a co-infection of Lyme.

Once into treatment, about 3 months, the pain went away.

I agree with Lymetoo, have the IgeniX tests done.

Seeing a LLMD will also help with other specific tests and a clinical observation. This way you will know for sure, either you have Lyme and co-infections or eliminate it and look for another cause.

During 12 years of illness, I had two Lyme tests done at local labs, both negative.

When the IgeneX test was done it was a different story and I now I am under treatment and responding well into my 5th month.

I've gone from the couch to walking a slow mile every other day.

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Peyjad
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Elaine g,

my feet do feel like you describe. It's like I can't 'roll' my foot heel to toe, when walking (when I get up), so I just lift my whole foot up insead of streching the muscle in my foot.
My symptoms don't seem nearly as severe as yours. At least most of the time I can function like nothing is wrong even if I don't feel good. The symptoms I do have right now come and go sometimes a couple times a day (ear, nose, muscle weakness, tingling to name a few) Thats what confuses me the most. How I feel fine one minute and the next feel terrible for a few hours. I'll get pressure in my jaws near my ears, they pop like crazy, ache, than my nose feels like someones pushing on the bridge-lots of pressure. I notice now when I rub my scalp lightly there's pressure there too. The newest thing I am noticing is I keep getting small painful bumps on my scalp, maybe 2 or 3 at a time, and a day or two later they are pimples. Sorry this is going on and on, I just wanted to explain deeper my symptoms. Thanks for reading!

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Pinelady
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Peyjad last Oct. I was so sick I could hardly go. My doc said I was just depressed and suffering

from vitamin D deficiency. I thought he is the one that was nuts. So I found someone who could

make me some homemade antibiotic, and I took it for 4 mths to stay out of a wheelchair and then I

tested at Igenex once I had convinced myself what it was after searching for 2 years. I had

believed my doc when he said I was neg. I did not know any better. Now I tell you if you think you

are sick you probably are and I would have preferred to take doxy for a month or so and then

retest. Or you can seek a LLMD to do this for you. It is that simple. If it is not lyme I do

believe this will enable them to find just what it is that is making you sick. Good Luck and

prayers.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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WildCondor
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Lyme is a clinical diagnosis, the testing is not necessary. A good LLMD will explain all of this to you.

Posters here posting western blot results in their signatures are misleading you into thinking that testing is essential for tick borne illness, when, in fact, the opposite is true, its reckless and irresponsible.

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Pinelady
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Reckless and irresponsible is what I consider drunk

driving. The IDSA and CDC have told us for 20

years we are nuts, and just suffering from

depression, psychosis, chronic fatigue, etc. etc.

because we do not have enough bands on a WB test

that will only pick up antibodies if the body is

making them in the first place.... That is

irresponsible. Not us who are trying to help.

Try explaining this to parents who have children

in wheelchairs because their doctors said it was

MS. Has to be because they do not have enough

bands. They took that girl to a park with rides

and she died there. It was her last ride. That is

the irresponsible we are trying to get across.

Just because you don't have enough bands you can

still be infected. If you think you can get your

doc to give you months of required antibiotics

to kill this after you have had it years good

luck. Because they won't treat something they

can't see. You will be labeled as MS/ or worse.

In the big picture a LLMD will treat

signs and symptoms, but not your avg. doc or IDS.

[ 11-16-2009, 08:20 AM: Message edited by: Pinelady ]

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Pinelady
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When they start teaching doctors to clinically

diagnose and treat I will. When they come up with a

better test I will. Right now Lyme is a diamond in

the rough and the time to polish and cut to make

it sparkle is now. Where it counts, at the top.

Not at the bottom where no one ever looks. We

have had this discussion before and we agreed to

disagree. Not accuse and cause confrontation. Take it to

the IDSA who made me be sick when I didn't have

to be. Take it to the teachers in colleges, and

hospitals and doctors who will treat something

they cannot see. There it would be best served.

To get all doctors not just LLMD's to diagnose

and treat. That is the big picture. Sure you can

send a patient to a LLMD to treat. IS that going

to change anything. No. Cost of treatment will

stay high, diagnosis will still be low, and

patients will continue to be sick with everything

but Lyme. Condor if you have been registered here since

2000 surely that should tell you that things are

not going to change by just sending people to a

LLMD. You have done a good job with that, still

it is the same.

[ 11-16-2009, 08:21 AM: Message edited by: Pinelady ]

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Peyjad
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I do understand now by reading all the information here and on other sites that it is a clinical ex.

For some reason I feel I have to get tested again to prove to my family that I am not just a hypochondriac and depressed. ( I have a special needs daughter so everyone thinks I am stressed about her, I am don't get me wrong, just nor fixated on something I can't change.)

I am going to post again to see if I can find more LLMD's in Maryland to give me more options. Just in case the one I am hoping to go to isn't accepting patients. (Dr. A. C.)

Thanks for ALL the help and all the views! I'll post more when I get an appt!

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Peyjad
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BTW, I understand also that chances are good I'd test negative again. So yes, I am going to follow the majoity here and just go right to LLMD and let him or her decide!
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Pinelady
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Good to hear Peyjad.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Pinelady
Frequent Contributor (5K+ posts)
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As patients continue to struggle with their

immediate health care concerns, the IDSA has

stepped up its efforts to try to silence treating

physicians and patient voices in DC. It does not

want legislation promoting research which can

help answer questions regarding diagnosis and

persistence but continues to promote "no chronic

Lyme" without adequate scientific backup for that

position.
November 15, 2009 Vol 2, Issue 9

www.LymeDiseaseAssociation.org

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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Lymetoo
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WC said... "A good LLMD will clinically test you and use lab data to support that diagnosis."

I agree with that!!! But the LLMD used a test for the "lab data", right? So testing is important. You are making it sound like nobody needs a test.

(love you WC!)

--------------------
--Lymetutu--
Opinions, not medical advice!

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Pinelady
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I suggest this thread be closed. Peyjad said he

will seek treatment so a good thing came. This was

neither the place or time to introduce conflict,

especially ones that have already been hashed out.

And especially in the presence of a new member.

Second opinions are great, it need not be an

attack of servitude.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
   

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