Feedback on two year struggle and many tests

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

allcourter
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/15/2009 6:16 PM (GMT -6)   
Hello and thanks ahead of time.
 
Symptoms.
1. Weird twitching all over mostly in muscles but sometimes eye and on face
2. Chest pain
3. Numbness and tingling
4. Stomach issues.
5. Dry eyes and feelings of particles in eyes
6. Crawling sensations on body
7. Migrating joint and muscle pain.  Only last sec and goes from place to place
8. breathing difficulties (lasts for short time) Mainly in humid weather and large pressure changes in barometric pressure
 
This is a flare up condition and seems worse during barometric changes.  I'll be fine for weeks then get flare up
 
Have had all tests, Nerve conduct, MRI, blood.
1.Said not MS
2. After 4 lyme tests Mostly western blots from Quest or labcorp I was only positive on band 41 but just became positive on band 58
also.
3. Last year had Igenix test and positive on one band 41 and indeterminate on a couple
 
I do have cervical arthritis
Some gerd
Some food intolerances
 
Is this more like lyme or fibro.  I know fibro is the pressure point pain but it can be a whole syndrome of things.
 
Thanks!! 

PSR1
Regular Member


Date Joined Sep 2009
Total Posts : 67
   Posted 10/15/2009 6:22 PM (GMT -6)   
I am also positive just on Band 41. I also have many neurological symptoms

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/15/2009 7:15 PM (GMT -6)   
Hi allcouter,

Welcome to the forum! Here is a little info for you to read:

Lyme Disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest-growing infectious disease in the United States after AIDS. This is very significant, yet little is being done to educate people about its seriousness and prevalence. Many people who are bitten do not know it because ticks are tiny and they inject a numbing agent so you cannot feel them. Lyme Disease is difficult to diagnose because no test is completely reliable. As a result, it is grossly underreported. Many people have it and do not know it. Often, doctors falsely believe that Lyme exists only in the northeast, when in fact it has been reported in every state.

Below is a Lyme Disease symptom list:

SYMPTOM CHECK LIST

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/15/2009 7:19 PM (GMT -6)   
You should get tested through IgeneX. They test for more Lyme specific bands. Here is what each bands represents. Band 58 is on there as well.

Quoting ticker:

Western Blot Bands description:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 10/15/2009 10:29 PM (GMT -6)   
Hi allcouter,

Your symptoms are like mine, except my migrating condition is pins and needles; the pain is more persistant. Like you, my symptoms follow a flare/recovery pattern. I was diagnosed with fibromyalgia, interstitial cystitis, gerd, ibs, adrenal insufficiency, chronic dry eye, mild asthma, and a lot more. As it turns out, those things had a common cause - Lyme, babesia, bartonella. I'd been tested for Lyme in the past but was told the results were negative. I did not get an accurate Lyme test until I had the Western Blot done at IgenX lab and had it read by a lyme literate medical doctor (LLMD). Ironically, my IgenX Western Blot results were sent to both a general practitioner (who ordered the test at my request) and a LLMD (whom I was waiting to see). The MD called to say the results were negative, the LLMD called to say they were inconclusive and I needed a further test. The further test confirmed Lyme and then more testing found the babesia and bartonella. What I tell people now, based on my experience, is that to have the best shot at an accurate result get the Western Blot at IgenX and have it read by a LLMD. That sounds like a lot of trouble and expense but it's worth it to have an accurate diagnosis.

I don't know how the bands and symptoms correspond, if at all, but band 41 is one of the bands for which I tested positive.

Rose
I have Lyme; it doesn't have me.


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35695
   Posted 10/16/2009 1:54 PM (GMT -6)   
Hi allcouter,
Welcome to the board!!! I am sure that you will find us helpful, kind & goofy!! Lyme seems to bring that out of some!! You will

also find a great deal of compassion here - we understand all too well what you are going through.

The first time I went to see a LLMD, he did the blood work & I turned up pos. on only the 41 band. My LLMD was a great man!!

The late Dr. Ed Masters. He felt that was more than enough proof (along with the clinical signs) to put me immediately on a high dose of Mino & left me on it for a full yr.

Have you seen a LLMD yet? Even the CDC puts on their site that blood tests don't reveal enough to stand alone (or soemthing

to that effect). Clinical signs are very important when dealing with TBI's (tick-borne infections).

The whole sx changing with the weather is very typical for many Lymies. Definately irritating!!

The other suggestion I have is to read, read, read!!! We are our own best advocate!! A whole lot of docs just haven't a clue what

having Lyme is all about. It encompasses so many things, mimics sooooo many other conditions.

BTW - IMHO, it does sound like you are dealing with one of the TBI's. there are sooo many strains, many of which have yet to be identified. Talking with a good LLMD will give you a lot of info as well.

Glad to have you here with us!!!
Hang in there!
Trav
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, August 16, 2017 10:04 PM (GMT -6)
There are a total of 2,856,372 posts in 313,394 threads.
View Active Threads


Who's Online
This forum has 155050 registered members. Please welcome our newest member, CDanny20.
386 Guest(s), 5 Registered Member(s) are currently online.  Details
CDanny20, KidneyAngel, Girlie, hogo2000, KittyJ


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer