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» LymeNet Flash » Questions and Discussion » Medical Questions » Positive Lyme specific bands? Neg. diagnosis?

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Author Topic: Positive Lyme specific bands? Neg. diagnosis?
justwondering
LymeNet Contributor
Member # 12813

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I will try to keep my post short and sweet, even though it is a long story! I am a married mother of two (10, 4) and I'm 31 years old. For over a decade, I've been ill. After years of endless symptoms and visiting many different doctors, I finally received a diagnosis of fibromyalgia. (MS was ruled out through an MRI and by a neurologist) No doctor ever mentioned the possibility of Lyme. Some of my symptoms are:

Severe fatigue
anxiety and panic
depression
severe muscle pain (tender points and more)
cracking, popping joints
sore hips
painful foot bones (difficulty walking)
raynaud's (soles of feet)
irritable bladder
reflux
dry/bloodshot eyes
motion sickness
heart palpitations, skipping beats
sensitivity to light, odors
irritable bowels
liver hemangiomas
many visual problems - episodes of nystagmus, blurred vision, drooping eyelids
excessively mixing up letters while writing
poor concentration and memory
some weakness in arms and legs
very swollen neck nodes all the time
headaches
episode of facial numbness (entire bottom lip for one day)


I am sure I left things out. Most of these, if not all, can be attributed to fibromyalgia. Recently, I realized though, that these symptoms followed a penny sized sore (raised, outlined, black in the middle, volcano-like) on the inside of my foot below my ankle over a decade ago. It wasn't a typical bullseye rash, but at the time I knew it was very unusual. It took awhile to go away, and soon afterwards I became ill with flu-like symptoms and was taken to the hospital and was told I had a "virus."

I finally recently had a Western Blot and was told I tested negative for Lyme, but was found to have a low white blood count. I was not feeling well at all when I had my blood taken, so I am pretty sure my counts would be related to fighting a virus and hopefully not something too serious.

On my Lyme test, I tested positive on igg/igc bands 18, 23, and 66. On the igm I tested positive on band 39. (CDC requires 5 on igc and 2 of igm)

- Since I tested positive on some very lyme specific bands, do you think it is likely I am positive?
- Do you think lyme could lead to a low white blood count?
- Do you think I could still have lyme and had two healthy pregnancies AND a normal MRI?
- Do you think the rash/sore I recall is related to lyme?
- What should my next step be since I did not meet CDC criteria? Should I test at Igenex or just "demand" my primary doc to treat me?

THANK YOU!
JP

Posts: 209 | From maryland | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
treepatrol
Honored Contributor (10K+ posts)
Member # 4117

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Forget the CDC and get a LLMD looks Like Lyme too me.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
GardenLymer
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It's so sad that it's always the same story.

Find an LLMD.

The CDC's stuff is screwed up to say the least - Lyme is a clinical diagnosis, but don't think you'll get 1 from a GP - cuz your waisting your time & precious energy.

Start taking your temp - my guess is that it will vary between being much lower than normal - and low grade - but never close to a normal 98.6*

Get on this site as often as you can & read, read, search, search.

Good luck & keep us posted!

Posts: 176 | From Tenn | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
duke77
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Member # 5051

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quote:
- Since I tested positive on some very lyme specific bands, do you think it is likely I am positive?
- Do you think lyme could lead to a low white blood count?
- Do you think I could still have lyme and had two healthy pregnancies AND a normal MRI?
- Do you think the rash/sore I recall is related to lyme?
- What should my next step be since I did not meet CDC criteria? Should I test at Igenex or just "demand" my primary doc to treat me?

With your symptoms, where you live and a band 39 positive I would lean hard towards Lyme.

A bacteria infection usually raises the WBC but with Lyme usual is not always the case. There are many people who have low WBC counts with Lyme. It effects your immune system so it is very possible. I myself have never had anything but a normal red and wbc so go figure.

Yes, it is possible to have normal pregnancies and still have Lyme. Not to worry you but Lyme can sometimes take years to show itself. Normal MRI's are very common I have had three normal MRI's.

Who knows about the sore it could be Lyme or from Lyme. Lyme presents itself in so many different ways.

I would find a LLMD asap.

Posts: 649 | From United States | Registered: Dec 2003  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
Frequent Contributor (5K+ posts)
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I echo everyone else- I would find a good LLMD.

The low white count- leukopenia- can be caused by Ehrlichiosis/ Anaplasmosis which can be completely blood negative even in acute, fulminant cases!!! SO if treated for TBDs I would make sure you get a good course of Doxycycline in there, generally 400 mg a day if over 110 pounds-

Welcome!!! You may very well be one of us- could also be other things- but definitely could be Lyme-!!
Sincerely,

--------------------
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  |  IP: Logged | Report this post to a Moderator
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346

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I have a low white blood cell count as well.

It sounds like lyme. Those are a lot of bands.

Go to a LLMD for sure.

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Definately see an LLMD. If you got those results and it wasn't IGeneX, it sure seems likely to be Lyme! Don't waste your time with your primary, even if he would treat, you want someone who has experience.

I had all normal pregnancies ... I've had Lyme for 35 years.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
justwondering
LymeNet Contributor
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Thank you ALL who've answered me, I really appreciate it! My biggest fear is that if I begin treatment for Lyme and I don't actually have it that I may just get sicker.... But like so many have said, some bands are too Lyme specific to ignore.... THANK YOU!
Posts: 209 | From maryland | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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welcome;

please EDIT MY PROFILE allowing private messages; you are in control of who can send you or not; anybody bothering you, etc.


i was going to send you my newbie package of77 pages. you can private mail me, click on icon ith 2 people standing together, ask me to mail this to you and i will; 77 pages.

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justwondering
LymeNet Contributor
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Thank you again for all your help! I am ready to contact an LLMD but I don't know where to start. What do you recommend is the best way for me to locate one here in Maryland?

THANK YOU

Posts: 209 | From maryland | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
   

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