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mentalcompass
Regular Member


Date Joined Jan 2011
Total Posts : 127
   Posted 1/15/2011 8:10 PM (GMT -6)   
I just got the test in the mail today. Which panel do you suggest, we're talking serious money for some of these tests, I'd love to know what one has the best chance of catching this, if that's what I have.
 
Thanks,
Traci

mentalcompass
Regular Member


Date Joined Jan 2011
Total Posts : 127
   Posted 1/15/2011 8:10 PM (GMT -6)   
I can open the box and list the tests, seems they sent me the kit and allow me to pick the panel, at least it looks that way from the paper that's wrapped around the box.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4130
   Posted 1/15/2011 8:36 PM (GMT -6)   
To save money, you can just do the Western Blot IgM and IgG (I think test #188 & #189).

But if you want a more comprehensive Lyme panel, you can do the IGeneX Panel 6050, which includes the IFA screening test, Western Blot IgM & IgG, and PCR tests.

None of the above look for coinfections...IGeneX does offer some coinfection tests, but they don't test for mycoplasma. You might consider looking into MDI, Clongen or Fry Labs for coinfection testing.

I hope this helps...take care,
-Razzle

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, UCTD, Osteoporosis, etc.; G-Tube
Meds: Ceftin, Singulair, Claritin, Domperidone, Milk Thistle, homeopathy, probiotics, etc.

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/15/2011 9:33 PM (GMT -6)   
To save money we just did the what Razzle suggested for my husband, the Western Blot IgM and IgG. It was $260, I think. If you include the IFA and PCR it's definitely more expensive.
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel, Suprax, Malarone, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Liothyronine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec

http://forty-two-joann.blogspot.com/

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2050
   Posted 1/15/2011 10:25 PM (GMT -6)   
I did the PCR and IFA as well as the western blot and they were both negative while the western blot was positive SO I wouldn't waste your money. I would just do the western blot.
Lyme, erlichosis, bartonella. 4 years undiagnosed despite 10 drs.
Current meds: roxythyroxine, bactrim, amanatadine, neurontin, xanax, valtrex, cymbalta
Prior meds: amoxicillin, probenecid, minocycline, tetracycline, doxy. IV refused by insurance. Supplements: boluke, alpha lipoic acid, ag immune, magnesium, milk thistle

mentalcompass
Regular Member


Date Joined Jan 2011
Total Posts : 127
   Posted 1/16/2011 9:53 AM (GMT -6)   
Thanks everyone. My eyes popped out of my head when I saw that price list! I'll do the Western Blot and see if my insurance company will cover part of it, maybe. ;)

mlcc2
New Member


Date Joined Feb 2012
Total Posts : 9
   Posted 3/2/2012 1:11 AM (GMT -6)   
Anyone able to read Ignex Western Blot tests or know of a LLMD in California? I cannot get the ordering physician to interpret mine. Any help would be greatly appreciated!!

Ignex panel results were as follows:



(Lyme IgM Western Blot)

IGENEX IGM RESULTS NEGATIVE
CDC/NYS RESULTS NEGATIVE

18kDa -
**23-25 kDa -
28kDa -
30kDa -
**31kDa -
**34kDa -
**39kDa -
**41kDa IND
45kDa -
58kDa -
66kDa -
**83-93kDa -


(Lyme IgG Western Blot)

IGENEX IGG RESULTS NEGATIVE
CDC/NYS RESULTS NEGATIVE

18kDa -
**23-25 kDa -
28kDa -
30kDa -
**31kDa -
**34kDa IND
**39kDa IND
**41kDa ++
45kDa -
58kDa -
66kDa -
**83-93kDa -

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 3/3/2012 8:22 PM (GMT -6)   
just out of curiosity. I have alot of unexplained symptoms and a few years ago I had some sort of bite on my leg I am not sure what it was from but I developed a bruise like rash and since then I have had a lot of weird symptoms. I had respiratory failure in 2010 but before that had bellspalsy and strep in my lungs. I have had two lyme antibody tests which showed negative but I also had a mycoplasma testing by igm and igg...igm was negative but igg was positive for mycoplasma...can mycoplasma cause symptoms same as lyme
treacheal stenosis,fibromyalgia,panic disorder,ptsd and who knows what else

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1347
   Posted 3/3/2012 11:17 PM (GMT -6)   
mlcc2 - it looks like your test would be interpreted as negative, although keep in mind that even through the better labs likwe Igenex a western blot isn't always accurate. If you're looking for an LLMD I'd suggest starting a new thread, that way more people will be able to see it and respond!

nana68 - I'm not 100% sure of what symptoms mycoplasma causes, to be honest. I've had it come out positive in my labs for years now - it's at its highest now...my first doctor told me it meant nothing (great medical care, wasn't it?) and the doctor I'm seeing now isn't really addressing it that much...I've almost gotten the impression that it's a sort of secondary infection that'll clear up on its own after the Lyme is taken care of. Same advice as above though - you'll probably be more likely to get answers if you start a new thread about the topic (I'd be very curious to get to the bottom of this mycoplasma thing as well!).
Co-Moderator, Lyme Disease Forum

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 3/4/2012 12:23 PM (GMT -6)   
I feel like I have to hurry up because I am not at all sure what is wrong with me. they did find a lesion on my brain that hasn't changed in a year and my ear on the left twitches plus alot of anxiety. My doctors won't order anymore lyme tests since the two they did were negative I think thats very closed minded of them...is there anyway that my neurologist could find it,I'm having a lumbar puncture because of the brain lesion and I'm not sure of what its being tested for but can I suggest a lyme test in the spinal fluid?
treacheal stenosis,fibromyalgia,panic disorder,ptsd and who knows what else

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 3/4/2012 12:25 PM (GMT -6)   
one more thing. If I do/did have lyme I was in hospital for respiratory failure and on high doses of several different antibiotics and antifungals. Would that have gotten rid of the bacteria?
treacheal stenosis,fibromyalgia,panic disorder,ptsd and who knows what else

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1347
   Posted 3/4/2012 12:29 PM (GMT -6)   
Lumbar punctures are very unreliable as far as Lyme testing, more so than blood tests, I believe.

A regular doctor isn't going to take the possibility of Lyme seriously; you could try asking them to send your bloodwork to igenex but that's probably about as far as they'll go. Mycoplasma is pretty common in people with tick-borne infections, and if you're having symptoms you should see an LLMD (Lyme literate) so you can get thorough care. Please let us know if you need help finding a doctor!
Co-Moderator, Lyme Disease Forum

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 3/4/2012 9:37 PM (GMT -6)   
I probably need help finding the right doctor I live in a small town in michigan not too many choices here. If I was on flagyl for two months and vancomycin for a week would that kill the lyme virus. I ended up with c difficule from regular antibiotics and they gave me flagyl for two months to get rid of the c diff.
treacheal stenosis,fibromyalgia,panic disorder,ptsd and who knows what else

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1347
   Posted 3/4/2012 10:02 PM (GMT -6)   
It's hard to tell whether the antibiotics you were on would've eradicated the infection - it depends no a lot of factors, such as how long you've been infected, what, if any, coinfections you have (besides the mycoplasma), what types of antibiotics, etc. May I suggest starting a new thread entitled, "Looking for an LLMD in Michigan," that way any of our other members with personal experience with doctors in your area can make suggestions (you'll want to make your email address available - don't worry only our members here will see it!) under your profile section.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
phassan@optonline.net

If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Co-Moderator, Lyme Disease Forum

Wiseguy
Regular Member


Date Joined Jun 2011
Total Posts : 52
   Posted 3/4/2012 10:04 PM (GMT -6)   
Nana, where do you live in Michigan? I live in Michigan too and may be able to help with a doctor.

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 3/4/2012 10:14 PM (GMT -6)   
in port huron about forty five minutes from detroit.and thanx border lime. I had a bunch of antibiotics for respiratory failure.anything from leavaquin,sulfonimides,an antifungal called vorconazole(i think thats it) to flagyl and vancomycin plus piperacillin alot anyways because when I was on the ventilator it caused bilateral pneumonia(maybe thats where the mycoplasma came in)and a candida and aspegillius lung infection all of which were cleared up. I am suffering so many affects I just would really like to find the cause of all this. I've been to see a vascular doctor,rheumatologist,neurologist,dermatologist...I'm getting mini diagnosis but not the whole picture so I am still trying to figure it out. I do know however that it started with a rash on my lower leg that was ring shaped. Many organisms can probably cause this so maybe I will never know. I have one again now but my pcp isn't taking it seriously so I will do what you guys have suggested and find a lyme doctor or a infectuous disease doctor.
treacheal stenosis,fibromyalgia,panic disorder,ptsd and who knows what else

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1347
   Posted 3/4/2012 11:11 PM (GMT -6)   
It sounds like you're having a bull's eye rash - which in and of itself is diagnostic of Lyme disease! Please do take pictures of the rash so you have documentation of it for your LLMD! Sadly most pcps don't take much of anything seriously - such a shame! It sounds like you're getting the same runaround so many people get before they find answers - of course I'm not a doctor so I can't tell you anything for certain but a ring-shaped rash is certainly nothing to ignore (shame on your pcp!).

I would definitely go for an LLMD and not an infectious disease specialist - they tend to be the worst as far as their approach to Lyme - they follow IDSA guidelines which are outdated and basically completely incorrect regarding the diagnosis and treatment of Lyme. They'll tell you that since you've been treated with abx in the past, there's no way you could have Lyme, which is simply untrue!

I was diagnosed with Lyme for the first time almost 10 years ago (by a Lyme specialist) and when my insurance company referred me to an infectious disease doctor, they denied that I, in fact, had Lyme, and sent me on a 10-wild goose chase thinking I had all these diseases that I didn't - all the while the infection was growing and growing!

I don't mean to scare you - Lyme can be treated, but it's just really important that you get treatment as soon as you can, and not waste time being mislead by ill-informed doctors.
Co-Moderator, Lyme Disease Forum

Wiseguy
Regular Member


Date Joined Jun 2011
Total Posts : 52
   Posted 3/5/2012 4:45 AM (GMT -6)   
Nana, I can't post doctors names on here and your email address is not available so I have no way of sending you any information.

Click on my name ( wiseguy) and you will see my email address. Send me an email and I will respond with some doctors in Michigan who specialize in Lyme.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14858
   Posted 3/5/2012 4:06 PM (GMT -6)   
Micc2, please see your other post about this for what I said: www.healingwell.com/community/default.aspx?f=30&m=2187825
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14858
   Posted 3/5/2012 4:34 PM (GMT -6)   
Hi Nana68!
Mycoplasma infections can be quite dangerous if left untreated. This was taken from www.lymediseaseblog.com/mycoplasma-overlooked-lyme-co-infection/

"The most common specie, Mycoplasma pneumoniae, typically causes respiratory infections like pneumonia, bronchitis, pharyngitis, and asthma. But it’s a stealth pathogen that can also cause non-respiratory diseases affecting the nervous system, blood, joints, skin, heart, liver, and pancreas."

Those happen to be the same things Lyme and other co-infections can cause as well, so you would need to see a Lyme Literate Medical doctor to sort everything out properly so that you can get the right treatment.

Lyme bacteria are highly adept at hiding from the immune system - not only do they suppress it, but they can change what is known as the outer surface protein so that the body believes the infection is gone. It can also hide in other ways. High doses of specific abx are needed for extended periods of time to be effective with these infections.

Please do find a doctor who is truly qualified to treat these infections (an LLMD) so that you have the opportunity to heal.

As Borderlyme pointed out, it sounds like you are describing a typical Bull's eye rash - and Lyme is the only disease that produces this type of rash, because that is the skin form of this disease. This means if you've had the rash, you have Lyme.

You are so right about getting "Mini diagnoses"!! It seems that most of us go through the list of different types of doctors, getting those mini diagnoses until we seek out a Lyme Literate Medical doctor to help us sort these things all out!

I saw this posted somewhere else a while back. What the diagnosis would be for those doc's that just can't bring themselves to say Lyme Disease: Multiple Neuro Fibro Arthritic Myalgia Fatigue Syndrome .... or MNFAMFS for short! LOL!
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

nana68
Regular Member


Date Joined Mar 2011
Total Posts : 474
   Posted 3/16/2012 9:05 PM (GMT -6)   
I found out today it's not a lyme rash it's something else weird schamberg's disease. I had a lumbar puncture though and lyme's is one of the things the neuro is looking for as well as ms and lupus and who knows what else.
treacheal stenosis,fibromyalgia,panic disorder,ptsd and who knows what else
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