The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=30&m=2418746
Posted By : Dani07 - 5/14/2012 4:10 PM
I've had the Western Blot test done many times. This is my most recent one for March & this is what it says..
IgG P93- Absent
IgG P66- Absent
IgG P58- Present- Abnormal
IgG P45- Absent


IgG P41- Present- Abnormal
IgG P39- Absent
IgG P30- Absent
IgG P28- Absent
IgG P23- Absent
IgG P18- Absent
Lyme IgG WB Interp. - Negative
Positive: 5 of the following Borrelia-specific bands: 18, 23, 28, 30, 39, 41, 58, 66, 93

IgM P41- Present- Abnormal
IgM P39- Absent
Igm P23- Present- Abnormal
Lyme IgM WB Interp- Positive- Abnormal

In another section of the test it says..
EBV Acute Infection Antibodies
EBV Ab VCA, IgM - 1.7- High

I have a very vague understanding of the results. I know IGm is current, active exposure & IgG is a past exposure. I would just like an opinion from someone else, or a similar experience to share

Also..My symptoms include..
Joint pain
Stiffness/pain in back and neck
Headaches/migraines
Burning sensations
Extreme fatigue & weakness
Numbness
Motion Sickness
Dizziness
Difficulty thinking/concentrating
Eye floaters
Hard time remembering things
Panic-Anxiety attacks
Insomnia
Nausea
Sore throat/ enlarged tonsil
Pain in ears
Light sensitivity
Heart palpitations
Chills
Low-grade fever
Muscle spasms
Pain in shoulder

I also had a rash on my back during the summer, in August, when I started to feel ill. Then it went away, I was feeling good up until this past October. I've been home schooled since February. Thanks in advance

Posted By : springsjean - 5/14/2012 7:20 PM
Hi Danio and welcome to the forum. Sorry to hear you have been sick. I dont' know if you have had a chance, but I would recommend reading the first thread on the forum entitled "New to Lyme - Start Here." It contains an unbelieveable amount of information.

As you know, you have a positive test. I had a similar test result but band 39 came up on my IGG which gave me a negative reading, resulting in years of misdiagnosis. Hopefully, you are in the early stages as you say you just started to feel ill in August? Did all of these symptoms start since there? Your symptoms are very common and familiar to those of us with lyme. Are you in treatment?

I would strongly recommend seeing an LLMD which is a lyme literate medical doctor. If you haven't researched lyme, you may not know that there is great controversy involving lyme diagnosis and treatment. Believe me, it will be so worth it to immediately see an LLMD rather than waste your time, energy, health and money with any other doctor. Do not let anyone convince you that an infectious disease dr. will treat the same or proper way.

I hope we can be of help to you here and you can get proper treatment fast. Many of us here have gotten well and you will do.
Co-Moderator
Lyme, HME, HGE, bartonella. 4+ years undiag. despite 10 drs.
Current meds: neurontin, cymbalta Prior meds: roxy, bactrim, doryx, amantadine, amox, minocycline, tetracy. IV refused by ins. Supplements: boluoke, alpha lipoic acid, AG immune, magnesium, milk thistle, resistant microbes, grapefruit seed ext.

Posted By : Dani07 - 5/14/2012 7:42 PM
Hey! Thank you so much. I did look over the "New to Lyme- Start Here" thread. Very helpful. You are the first person to agree with me that I'm positive, you don't know how happy I was to read that. The symptoms have worsened over time, but the headaches started in August..then came along all the others symptoms. I'm not being treated unfortuantley, I've gone an infectious disease doctor and he doesn't think I have Lyme. I'm getting a second opinion from a different infectious disease doctor this Thursday. I was also considering going through the Igenex Lab in California to get a proper diagnosis.

Are LLMD's covered by insurance? I know it depends on the insurance company in most cases. I am very well aware of the controversial matters. I watched the DVD called "Under Our Skin" That was when I realized I need to advocate for myself and not depend on these doctors that are trying to tell me I have Chronic Fatigue Syndrome. I have also seen a Neurologist, Cardiologist, Chronic Fatigue Specialist, Infectious Disease Dr, Adolescent Medicine Dr, etc. I feel myself getting worse. I'm really hoping for a diagnosis, but I feel like I'm stuck where I am.

Thanks again for the kind words!

Posted By : borderlyme - 5/14/2012 10:09 PM
Hi Dani - welcome to the forum! I know it can be tough navigating all of this lyme stuff, but we're here to help however we can. While I'm sure there are exceptions to the rule, generally infectious disease doctors will tell you it's not lyme, almost robotically. Just out of curiosity, was the rash you had a typical bull's eye? That's usually the one red flag that'll at least get an ID doctor to pay a little attention.

As far as LLMDs, there might be some out there that take insurance - a lot don't though. Good news is most insurance companies are good about reimbursing visits - mine have been reimbursed at 100% (which is actually cheaper than my in-network copay, which I've always thought was somewhat odd). If you need help locating one, you might want to try posting a new thread: "Looking for LLMD in ___ your state/city," that way members can send you recommendations (you'll also have to make your email available through the profile section - we don't post doctors' names on here).

Otherwise, 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


Best of luck!
Co-Moderator, Lyme Disease Forum

Posted By : Razzle - 5/15/2012 2:22 AM
"I know IGm is current, active exposure & IgG is a past exposure."

True for most infections, except not true for Lyme.

Lyme changes its outer surface frequently, causing the immune system to continually make new IgM antibodies. Thus, many with chronic Lyme actually have more or higher IgM bands/titers than IgG.

But no matter which (IgG, IgM) shows positive, it is still a positive result and should be interpreted in light of symptoms.

BTW, all of your symptoms are common in those with Lyme. If I were you, I'd run, not walk, away from Infectious Disease doctors and go to an LLMD as soon as you can get in to see one.
-Razzle
Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Claritin, Singulair, Andrographis & other herbs, homeopathy, supplements, etc.

Posted By : Dani07 - 5/15/2012 11:14 AM
Thank both of you so much. Lyme isn't the easiest thing to understand, so I've learned. But I'm trying to inform myself as much as possible. Does it matter if I see an LLMD or an ILADS doctor? I know of an ILADS doctor but I'm open to hear about other doctors as well. I'll definitely check out those websites. I've heard that first visits are like $300-$500 then the price goes down after the first visit. Do you know if all insurance companies reimburse all visits? And lastly, does it take a long time to get appointments?
As I said, I'm stuck with this appointment at the Infectious Disease Doctor this week, but I won't take what he says to heart. I have a feeling it will be a waste of my time anyway.
-Dani

Posted By : Scott Larson - 10/7/2012 11:52 AM
Greetings All --

I'm new to this forum but have read the previous posts and wanted to share some of my experience in the hopes of shedding potential light on what I have been going through recently.

For the better part of 18 months, I have been experiencing a host of non-specific symptoms, ranging from: severe panic/anxiety, bi-lateral chest and shoulder pain, neck discomfort/tightness, dizziness/light-headedness, mental confusion and difficulty focusing, brief/acute pain in the extremities (feet/fingers), intermittent facial numbness/tingling, involuntary muscle spasm/twitching, temperature sensitivity, and heart palp's, etc - just to name some of the moreprominent.

Obviously, I have been racking my brain trying to make some kind of sense of these unusual symptoms. Regrettably, these efforts have been largely fruitless.

I've had numerous EKG's and two separate full cardiac workup's, including a stress test and echo cardiogram. All were negative and revealed nothing beyond the fact that my heart and cardiovascular system are perfectly healthy. I suppose this should not come as any great shock given that I am a competitive marathon runner and tri-athlete having completed upwards of 10 marathons and an Ironman last summer.

I also had an abdominal CT which similarly revealed nothing, as well as an abdominal ultrasound to rule out a potential abdominal aortic aneurysm. The head scratching continued.

My PCP put me on a 10mg dose of celexa for depression/anxiety and sent me on my way. Told me I was health-obsessed, proclaimed me a "healthy stud", and instructed me to take up yoga and register for my next Ironman. In a word -- dismissive.

Most recently, the dizziness and light-headedness have become more pronounced and the pain/discomfort in my left shoulder and chest more persistent. Seems/feels musculo-skeletal. For a time, I thought that the constant cradling/holding of my newborn son in combination with the weightlifting regimen I follow may have been at-play, but I really feel that's a bit of a stretch. Like many of you, I'm sure, I am constantly "grasping at straws" trying to make sense of the things I'm feeling.

Of course, the collective impact of all this has taken an enormous emotional toll on me, as well as my wife, and has transformed me into a person I often fail to recognize. I'm in a constant state of worry, anticipating when the next "bout" will ensue. I assure you, this is no way to live.

Several months back, suspecting that Lyme may be at-play (again, grasping at another straw), I went to a Naturopath and he ordered a Western Blot Serum. Of course, the CDC guidelines on a definitive Lyme diagnosis are both highly controversial and hotly debated. In any case, the results came back and revealed "Present" for 2 Bands: IgG P-41 (not Lyme specific) and IgG P-18 (Lyme specific and often cited by Lyme experts as a very likely and highly reliably indicator of Lyme by itself). However due to the fact that only two bands (vice the CDC-mandated five) came back positive, the Naturopath decreed that I did not have Lyme. He did concede that the presence of the 2 IgG Bands was "peculiar", but did not take it any farther than that.

Several days ago, I "bit" the proverbial "bullet" and went for a "Virtual Physical." The CT-scan (no contrast) revealed slightly enlarged cerebral L/R ventricles (which I now know is medically classified as "hydrocephalus"). No evidence of tumor/lesion or stroke was apparent and there was no indication of brain atrophy. On the "brighter side" my coronary calcium score was a perfect Zero. Unfortunately, this was of little consolation. The remainder of the scan was clear and unremarkable.

Presumably, I will now go for a follow-up (once I meet w/ my PCP on Tuesday) with a Neuro, who will likely order a more comprehensive work-up that will prob' include a contrast MRI to help determine whether the hydrocephalus is "communicating" or "non-communicating", and also whether there is any noticeable blockage or ventricular stenosis at-play. For my part, I have not experienced chronic headaches, gait disturbance, visual impairment, urinary incontinence, dementia, or any other of the classic symptoms usually associated with hydrocephalus. This is as puzzling as it disturbing.

So...I have thus revisited my Western Blot results from LabCorp. As one of the several causes of hydrocephalus/ventricular swelling is bacterial infection, one thought I had is that Lyme could be playing a potential role in all of this. Again -- perhaps grasping at the proverbial straw, but various medical threads I have read and Lyme/Hydro blogs have suggested a plausible and clinically demonstrated link between these phenomena.

I have no idea what, if any, traction I may get with my PCP on this theory, and I have no clue whether the Neuro I will eventually consult with may consider these cases linked. As we all know, assertions of Lyme are often dismissed and marginalized by the mainstream medical community. However, the fact that I have tested positive for 2 IgG Bands and have a host of other seemingly related symptoms leads me to think (hope) that I am not indulging in utter self delusion with all of this.

In the end, I just want my life back and to be able to enjoy the bliss that "should" accompany a newborn. I have been fundamentally deprived of these things for too long and just desperately want some peace of mind.

Any thoughts from the broader audience?

I genuinely appreciate any thoughts/considerations you may be willing/compelled to offer.

Many thanks an blessings to all of you...

Posted By : jwjjtt - 10/7/2012 12:11 PM
Dani07,

If you can get to see an ILADS doctor, it's probably a good idea to go there.

LLMD simply stands for Lyme Literate doctor. They may, or may not, be associated with ILADS which is the International Lyme and Associated Diseases Society, www.ilads.org.

An ILADS doc is often up on the the latest research/treatments/etc. regarding the Lyme Complex. If you go to website, you can learn a lot more about the whole ILADS thing.

Posted By : T34flygirl - 10/7/2012 1:42 PM
Hi Scott, I'm fairly new as well but your story is all too familiar to me. What I have learned in my quest to find answers, is that lyme disease and coinfections are not going to be comsidered by a PCP...i am surprised at the the response from your ND...i actually had the same bands positive as you, on my igenex labs, along with band 58...even the LLMD that i have recently started going to agreed that it is neg for lyme. However, she did test me for an unbelievable amount of other things. Here is what came back positive: anaplasma and mycoplasma, coinfections of lyme, yersinia, EBV and candida....so the combination of these bacteria and virus explains my symptoms and they sure sound a lot like yours. She is going to treat me with iv antibiotics, which i understand is the best way to go. I have always been a very active person and I'll say halfway intellegent :-) but have been reduced to not being able to use my brain for much and rarely see much outside the house except for going to doctors. This time last year I was flying my a## off but now i cant even drive to the airport. You are right, this is no way to live. So you gotta keep looking for answers and dont stop until you get them. As recommended by Dani, you need a LLMD, period! Dont waste your time with a neurologist. What state are you in?

Tracy :-)

Posted By : worriedinvt - 10/7/2012 7:43 PM
I used an LLMD who is a Family Practice dr. As an MD she works with antibiotics but her philosophy is more holistic in approach. Bc she is an MD and family dr, she accepts my insurance. I would def see if you can find someone who does even if its a couple hours away bc it can get pricey with the number of meds and visits.

My son is seeing a naturopath and she also takes our insurance.

Posted By : Scott Larson - 10/8/2012 8:48 AM
Thanks for the reply, Tracy. I'm in Southern Maryland. I haven't had much success locating an LLMD in my area, but I will continue to investigate.

Essentially, I asked the ND to order the Western Blot serum on a hunch due to what I perceived as abnormal, nonspecific symptoms -- facial numbness, muscle spasms, twicthing, and balance issues -- along with the chest/shoulder soreness. I didn't notice a bullseye rash or anything that resembled a bite of any sort. Truthfully, some of the symptoms abate and reappear at random intervals with seemingly no rhyme or reason. Because I am a self-confessed fitness fanatic, I suppose I often "will" myself to get to the gym or hit the pavement, though my energy levels have definitely suffered as a result of all this.

I don't necessarily fault the ND. He was clearly outside of his comfort zone and resolved to defer to the CDC guidelines, which I clearly did not meet. In hindsight, I suppose it would have been appropriate for him to have referred me to an LLMD or something like that. In many ways, I think most MD's and NDs, alike, dismiss my concerns as hypochondria due to my seemingly good overall health and the palpable anxiety I demonstrate at my various appointments. All I know is that it's extremely distressing and frustrating.

I will have to follow up with a Neuro, regardless, in order to investigate the ventricular enlargement more thoroughly. The fact that I'm not presenting with any of the classic neuro symtptoms (balance/light-headedness not withstanding) gives me hope that I am not confronting anything serious/scary, but I just don't know. As I said - no gait or visual impairment, bladder incontinence, speech problems, headaches, or dementia seem to present. But, yet, my CT still showed ventricular enlargement. Infection is one possible cause, and one I am hoping to explore further. Unfortunately, I am stuck in limbo for the time being.

The Western Blot results I received from Lab Corp are confusing, to say the least. And the lack of agreement on what constitutes "lyme specific" bands is equally frustrating. I have combed the web looking for anything that might offer a definitive consensus, to no avail. It seems most agree that Band 41 is non-specific, but often an early (reliable) indicator. The real debate sees to involve Band 18. My IgM was positive, as I said, but while some contend that this IS definitely a Lyme-specific band, some are not as adamant. Co-Infection is certainly a possibility. I suspect the challenge will be finding a Dr. wiling to pursue it further.

Thank you for indulging my questions and concerns. I've burdened my family (both immediate and extended) with all of this to the point of emotional exhaustion. Until someone has walked in our shoes, they really just don't understand the tol this takes. Not their fault, but is what it is. I hope you find a peaceful path and a much-deserved reprieve from your own trials soon.

Blessings and Health...

Scott

Posted By : Carrie48 - 10/8/2012 9:27 AM
Scott,

I am so very sorry that you are having to deal with all of us when all you want to do is be of "sound mind" with your newborn baby. I think about wanting to be rid of worry all the time and I get angry that I have to deal with all of this. You are not alone

I wanted to tell you that I too have the facial symptoms. They come and go but were one of my first symptoms when I new something was not right. My lyme became "active" after I had gallbladder surgery. I know for a fact I had a tick bite many years ago (when I was 14-15 and I'm now 50). Anyway, I do believe that a stressor to our bodies plays a role in allowing the lyme to be uncontrolled by our immune system. Was there a stressor in your life that you can remember prior to your symptoms starting up?

When my symptoms first started, I had a numbness under my left eye with a tingling feeling. It was so disturbing and I was unbelievably scared. That was followed by a LOT of other neuro symptoms in my feet, legs, etc. I saw two neuros who told me it was all anxiety and sent me away with an RX for antidepressants. Sound familiar? Anyway, long story short, my GI doc sent me to UCSF and an MRI later and tons of tests revealed 20+ lesions on my brain..but not MS. Scary, right??!! Interestingly though, the first neuro asked "have you had lyme disease". Anyway, they tested me and did a lumbar...not lyme they said. Sent me on my way...no explanation. SO...I wound up getting my own test at Igenex labs and tested positive for Lyme with Co-infection and am now in treatment.

Wow...I got on here to explain the face stuff....and I'm way off base now.

Anyway, my face symptoms have changed and now I feel a pulling, tugging feeling in my cheek. I feel like I look like Elvis sometimes with the lip pulling up only I don't think it's noticable by anyone else but it's very scarey to me. Also, at my initial onset of symptoms, like you, I had real pain in my hands and feet. That did go away, but I still get all these neuro things going on...it's really scarey to me.

Keep up on your journey to finding out what is wrong and keep us posted!
DX with Lyme and Erlichosis in January 2010. January-August: Biaxin and Amoxicillian. September 2011 - ? on Rifampin and Zithromax. Symtpoms mostly neuro and have 20 small lesions on brain.

Posted By : Scott Larson - 10/10/2012 11:49 AM
Thanks, Carrie.
 
It always helps to dialogue with those who have had to walk a similar path. It's a powerful feeling to know that you're not alone...
 
Recent developments to share: I've had my CT read by three seperate and independent (highly trained and reputable) Radiologists (one of whom happens to be a neurological rediologist trained at MGH), and all have unanimously decreed that my head scan is perfectly normal. NO evidence of excess fluid in my lateral ventricles. They have also unilaterally dismissed the contention that I may have suffered a "lacunar infarct" or have anything remotely resembling encephalomalacia.
 
The scan was originally read by a purported Radiologist at a "Virtual Physical" office in Maryland. The other Doctors I've consulted with in the last 2 days have all expressed dismay (and anger) not only at his irresponsible diagnosis but also the manner in which it was conveyed. As an aside, I suppose it is ALWAYS sound practice to consider the source of any diagnosis one receives. I was initially reluctant to consult one of these places in the first place, and it would appear I should have followed that instinct. But I digress...
 
My PCM was "less-than-pleased" with the "end around" I executed by consulting Virtual Physical. She expressed no small amount of frustration over the fact that I voluntarily (and unnecessarily) exposed myself to a year's worth of X-ray radiation in 10 minutes, but she'll get over it eventually. She has, however, ordered a follow-up Lyme test based on the Lab Corp results I showed her that revealed IgG-18 and 41 Reactive. I "think" she said that it would be an ELISA (??) test. I'm not really sure what that means, but she was less-than-optimistic that it would come back with anything conclusive. Dismissive as usual. I guess all I can do at this point is get re-tested and hope for the best.
 
Will let everyone know what unfolds.
 
Thanks very much again for the collective thoughts and insights. Blessings and Good Health to all...
 
Scott
 
 

Posted By : Carrie48 - 10/10/2012 3:58 PM
Hi Scott,

If you don't get any concrete answers from your Elisa test (and I doubt you will to be honest), I would pursue a test from Igenex Labs in Palo Alto, CA. If you call them, they will fedex you a test kit. You have your doctor sign the lab slip, then you go to a lab and get the blood draw. If you have lyme, you most definitely want to start treatment. It's not going to go away on it's own.

Carrie
DX with Lyme and Erlichosis in January 2010. January-August: Biaxin and Amoxicillian. September 2011 - ? on Rifampin and Zithromax. Symtpoms mostly neuro and have 20 small lesions on brain.

Posted By : Traveler - 10/10/2012 4:15 PM
Hi Scott,
Please do a little research on the testing that's available for tick-borne infections. You will find that the ELISA is useless and even the Western Blot will miss 50% - or 60% of those that are infected with Lyme or other tick-borne infections. They just aren't sensitive enough. This is why the best LLMD's will diagnose based on symptoms (clinically diagnosing).

There are several reasons for this. There are over 100 strains of Lyme in the US alone (300 world wide), 30 different species of Bartonella, 20 different species of Babesia, and 20 different species of Rickettsia (think Rocky Mountain Spotted Fever). The best labs will only test for about 4 or 5 Lyme strains, and only 2 or 3 strains of the rest. If you happen to have one of the other strains, there's no way you will test positive. Those tests were designed for tracking the disease, not for diagnosing the disease. Unfortunately, the CDC has forgotten how important that info is and has taken it down from their website.

This is not to mention that Lyme and Bartonella both can impair the immune system so that it doesn't even recognize the bacteria as an invader, allowing it free access to the body, and no antibody response will happen - which is what these tests are designed to look for.

Also, Lyme has not only a cell wall deficient stage (the cell wall is what the immune system uses to identify different cells), but also has a cyst form where it is protected from practically everything!

I do hope that you can get the care you need to recover. There's nothing like the joy of your own children to keep you going or lift your spirits!
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List" for Lyme disease.

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

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name

Posted By : Scott Larson - 10/11/2012 1:29 PM
Thanks Carrie and Traveler. I appreciate the feedback and have every intention of implementing it. One of the most frustrating things I have encountered with respect to Lyme is the lack of anything resembling a consensus about a) how to diagnose it, and b) how to treat it. For every blog or site that claims that one band is specifc, there's another that refutes it. For every site that says Western Blot is better than ELISA, there's another that makes the exact opposite claim. It's a tireless search through an endless abyss of conflicting information, and no one in mainstream medicine gives a darn -- to say nothing of the stance Insurance Companies take when dealing with suffering patients. My search will continue and I will be a boil on my PCP's a@@ until something resembling an answer is found...

Many continued blessings and peace/good health to all...

Posted By : Traveler - 10/11/2012 1:48 PM
Scott,
You are so right about all the confusion out there! It's a shame, but it's because there doesn't seem to be one right answer to a lot of this stuff. I would encourage you to seek out scientific articles and articles that have been written by researchers other than Infectious Disease docs. Most of them have their own agenda it seems.

I would encourage you to also look into things that ILADS (International Lyme and Associated Diseases Society) backs. Here is a link to their website: www.ilads.org/lyme_disease/treatment_guidelines.html

May you have a smooth healing path!
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List" for Lyme disease.

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

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name

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

Advertise | Privacy Policy & Disclaimer