IGENEX test results are in. Interpretation?

A little help please?

IGG Result Negative
CDC/NYS Result Negaitve


Lyme IGM Western Blot
18kDa. ++
**23-25kDa. -
28kDa -
30kDa -
**31kDa -
**34 kDa IND
**39kDa -
**41kDa +
45 kDa -
58kDa -
66 kDa -
**83-93 kDa -


Lyme IGG Western Blot
IGG result Negative
CDC/NYS Result Negative
18kDa -
**23-25 kDa -
28kDa -
30 kDa -
**31 kDa -
**34 kDa -
**39kDa IND
**41kDa ++
45kDa -
58kDa +
66kDa -
**83-93kDa -

Multiplex B. Bergdoferi Serum
GENSOMIC - B BURGDORFERI - Negative
PLASMID - B BURGDORERI Negative

Multiplex B. Bergdoferi Whole Blood
Genomic - B Burgdorferi Negative
Plasmid - B Burgdorferi Negative

Thanks in advance,

Chris

Chris:

On your IGM, you have a positive 18 and a positive 41, as well as an IND on 34. IND means something is there. http://www.anapsid.org/lyme/wb.html

34 is specific for Lyme.

On your IGG, 41 is positive again, as well as another IND (again, they found *something*) on 39, which is Lyme specific.

I would agree with the suggestion to see a LLMD.
http://ilads.org/ilads_media/physician-referral/

Hey guys. Thanks for the quick replies.

I was recently diagnosed with Multiple Sclerosis. 31 yr old active male - The short of it, back in August 2014 i thought i was having a stroke. Right arm went numb, lost all strength in my right arm as well as fine motor control of my hand to the point where I couldn't even hold my cell phone and text. Also had slurred speech and partial facial paralysis. I went to the ER where they performed a CT scan, EKG and did blood work. The hospital staff were perplexed because i was showing signs of a stroke but all tests came back saying i was fine. These symptoms lasted roughly 4 hours and disappeared as quickly as they came on. I was immediately refereed to a heart and stroke clinic where they found my cholesterol was a bit high (higher than they'd like to see with somebody who could be prone to heart disease or stroke) so in the mean time they put me on 40mg of Lipitor and a daily baby Aspirin.

In the days that followed i had another CT scan, this time with contrast and the results from that came back as normal. Then I had an MRI. On the MRI scan they found one white matter lesion. The Neurologist had suggested he though it could be MS as the lesion matched the criteria. He then ordered a second MRI this time to be done with contrast. On the second MRI another new white matter lesion could be seen. Between the two MRI scans about a month had elapsed. Then i had an MRI of my theocratic spine, which came back normal. Somehow, they over looked scanning my cervical spine (booked for another MRI in the upcoming weeks.)

During this time they were also completing more blood work. Out of which some of the screening they performed one was for ELISA (false-positive) and the Western Blot - Canadian standards which came back as a negative.

In December i had another relapse. Slurred speech. This time the problem lasted about 3 weeks (to this day i have a problem annunciating large syllable words) followed by 2 months of bowel problems. Also a lumbar puncture was performed in mid December where they found oligoclonal bands in my CSF and certain proteins which are associated with MS. However, the lab dropped the ball as they were supposed to screen for Lyme but didn't.

At the beginning of January 2015 I had visual evoked potential testing completed. I registered 120 milliseconds in my right eye and 119 in my left. 116 is the norm, thus suggesting i am having inflammation around my optic nerve otherwise known as optic neuritis which is known to be another symptom of people with MS. I also started to get sharp stabbing pains behind my right eye that last a split second and come and go as they please.

It was in mid January that my Neurologist made the diagnosis of MS after all of my symptoms had painted a picture.

But i have questioned this diagnoses. Some of my symptoms are asymptomatic of MS and even my new neurologist who specializes in MS has agreed with me.

Thus leading me to IGENEX.

Some tests that were not ordered by MD that i have taken the liberty to pay for myself and have done;

Medical testing

IGENEX
CSF was not tested for syphilis - So i had blood work done on my own to confirm it wasn't. That blood work came back negative. Would neurosyphilis show up in blood work?
Candida blood serum test which came back as trace amounts in my blood.

Naturopathic testing

Leaky gut- positive
Candida via live blood screening - positive


Other weird symptoms I've had since this all began;

Head pressure & Headaches. Never used to get headaches. Now it seems i get them every second day -Something my neurologist is looking into

Fatigue - getting worse as time goes on

Stiff lower back and stiff neck - not everyday but comes and goes as it pleases. I can not contribute this or have seen any pattern related to this from physical activity.

Bowel issues. Kind of like IBS. The feeling of incomplete and or urgent bowel movements and diarrhea on and off- This has since subsided symptomatic from Dec-March.

Sharp pain behind right eye. Been to an optometrist and my vision, peripheral vision, and color test are all fine for somebody my age. Even had a retinal scan which came back as fine. Optometrist chalked it up to optic neuritis based on him not finding anything and the results from my visual evoked potential. Next step is to see a Neuro-Ophthalmologist.

Sinus pressure, post nasal drip and ear pressure. Ive had a constant issue with my sinus' for the past 6 months. This seems to be associated with a pressure i get in my ears. Best way i can describe it is like being in an airplane popping your ears only to have the pressure return immediately. THIS has been the most debilitating symptom for me so far as it seems to always be there. I've tried to remedy this with antihistamines, which don't really work, and Tylenol cold and sinus, which seems to work sometimes but tend to steer away from ongoing use of pseudoephedrine hydrochloride. It also causes very minute (mynute) stability issues. Can no longer walk heal to toe with my eyes closed.

A pressure in my floating rib on my right side. My chiropractor seems to have to adjust this on a weekly basis (probably not related to anything)

Anxiety out of nowhere sometimes on the very rare occasion also nausea.


A list of prescribed drugs and vitamins I am on

Soon to start (with in two weeks) a daily injection of glatiramer acetate (Copaxone) in the hopes to slow down the CNS lesions. I chose this method of therapy because A.) it is probably the safest, has the least side effects, and one of the most tried disease modifying drugs to treat CNS lesions on the market today. B.) it does not suppress the immune system like other disease modifying drugs should it be something else that i have.
5mg crestor daily
baby Aspirin every 3rd day
4800IU of oral Vitamin D3 daily
multi vitamin
omega 3
thinking about taking Vitamin K2 to compliment the D3




Previous symptoms i've had prior to August 2014 that may or may not be associated to whats going on but might help paint a larger picture

Pins and needles and in my hands and fingers especially when laying in bed with the laptop or driving for extended periods of time - this is an ongoing symptom that has been around for the previous 5 years

On occasion my wife would tell me i would have muscle twitching or spasms as I fall asleep.

Severe vertigo if i were to awaken (that place in between awake and sleep) then try to fall back asleep. This seemed to be remedied by getting up and opening my eyes.

Chest pain that was not associated with physical activity. Would tend to happen when i was laying in bed falling asleep - This started when i was 15. Was sent to see a cardiologist, did every test imaginable except a Angiogram/Cardiac Catheterization as he felt it was unnecessary. I still get the chest pain form time to time, however the cardiologist concluded it had nothing to with my heart.


...and that's about it LOL

As i stated above, I live in Canada. We only have one LLMD in all of Canada and unfortunately he's on the other side of the country. NY would seem like the best bet, however, seeing as I live in Canada and we have Universal Medical Care thus there is no need for private insurance..so...i do not have any insurance to help with the associated costs of seeking medical attention outside of my country. UGH.

I should also add, I have not experienced any fevers or "chills." My heart rate is usually around 65 resting and my blood pressure is 121/67.

Traveler,

Consider my email open for business. Thanks

Post Edited (Chris_1234) : 4/14/2015 12:03:06 PM (GMT-6)

Hi Chris - My first symptom was my left arm went numb and limp along with sharp stabbing pain in my left shoulder blade...radiating up my neck.
I didn't recognize it as lyme - was told it's a pinched nerve. My GP said from the cervical nerve root, my chiro said thoracic outlook.

A few months later, my symptoms exploded....
To date, the initial symptom is still my worst...gives me the most grief - not numb arm anymore, but nerve pain down to my hand and index finger....

It certainly sounds like lyme disease symptoms.

BTW I am in Canada, too, but on the West coast. I see a LLND in Richmond, BC. I don't know what's available to you where you are...but if you're interested in flying to Richmond for a consult, this LLND will do telephone consults thereafter. He has been treating me for 9 months, and I've seen him twice. My 1/2 hour phone appointments are $80 and they are every 4 weeks.
Our BC Medical doesn't pay for those appointments, but our Blue Cross pays for 80% up to $500 in a calendar year...definitely helps. All our antibiotics are 80% reimbursed - no limit.

I'm not sure if there is a LLND back East - I know there are other lyme disease patients from other Provinces going to my LLND. He is experienced, been treating for several years now, and his practice is something like 80 or 90% lyme treatment (can't remember which).

Good luck!

I know there are several forum members from Eastern Canada...maybe they know of a LLND there that can help you. Do you know if the ND's are licensed to prescribe antibiotics? (If you want to go that route). That is the bonus of my LLND - he can prescribe.

Chris - Can the ND's in Ontario prescribe antibiotics? They can in B.C. But that doesn't matter if you're interested in going the natural route anyway.

My ND is very successful at treating lyme disease...he is ILADS member...he does use antibiotics though, unless the patient just wants the herbal treatment.

There is a retired LLMD in B.C. - was constantly being investigated...so he retired and now he dedicates his life to lyme disease education.
There is also a Dr. in B.C. who does something very close to the Marshal Protocol. I don't know how knowledgeable he is.

Dr Harris at Igenex was kind enough to field some questions I had about my test results. He seemed concerned that my results were IND for both 34 IGM and 39 IGG and suggested not to stop looking in to this. He suggested i try Cumanda and Banderol for one (no LLMD and ND can not prescribe in my province) month and then have my blood re tested for Western blot IGG. Any body have any experience wither either of these herbal products?

Hi Traveler,

No Worries. Greatly appreciate the info you have provided me with. What would you suggest as far as treatment. Is one better than the other?

You should go see a specialist for ms.to confirm or deny it. Ms symptoms are not easily diagnosed. And from what I have read on ppl accounts sun proms typically last more 24hrs. But there are exceptions. You should look at the ms category on this sitr

Will LLMD's still treat someone with a negative Lyme test?

Cat - They very well could be - but I'm surely not comfortable telling anyone anything other than that.

There are reports of people being "cured" from MS, ALS and other things when they treat their Lyme & co-infections though. With no definitive tests for these things, who's to say that it wasn't Lyme all along?

zasz said...
You should go see a specialist for ms.to confirm or deny it. Ms symptoms are not easily diagnosed. And from what I have read on ppl accounts sun proms typically last more 24hrs. But there are exceptions. You should look at the ms category on this sitr

Hi Zasz,

I was diagnosed with MS in Jan 2015 after a long 5 months of testing.

My take on the disease after spending countless hours of reading other MS patients stories and symptoms, speaking with many Neurologists, Visiting one of the busiest MS clinics in North America and speaking with the Drug company that manufactures one of the disease modifying drugs that treats MS; I truly believe that there is an underlying condition (so does the drug company), either viral or bacterial, that causes an auto immune reaction in ones body. Eventually leading to the break down of the blood brain barrier and in my case then emerging as what we know as MS. What that cause(s) is nobody knows. What I do gather is all the information through every single test that has been completed on my myself along with my clinical signs and combining them together they are painting a picture. Leading me to look down the path of Lyme.

I am a person that asks questions, always have been. I inform and educate myself to the best of my ability. I've always said there is no stupid question, only stupid answers. I am not a person who will sit back and say "yeah, i have MS and possibly Lyme, and these are the drugs that i've been prescribed and be o.k. with it. So little about either disease is known how can anyone not ask questions? I don't have an issue with Doctors, but at the end of the day i don't rest my life in their hands as they are not the ones living my reality. Everyone is different and maybe this is how a reason with it, but i sleep better at night knowing I am trying something.

Im not trying to get off the topic of Lyme but here is an interesting article http://www.ottawacitizen.com/health/Ottawa+doctors+behind+breakthrough+multiple+sclerosis+study/8189161/story.html

Chris, I hope you don't mind but I'm going to throw in some questions. I'm new to this too so I have lots of questions. I have not yet had the IGenex testing done, because on the advice another forum member I am taking Olive Leaf Extract for about 5 weeks to build up the bacteria load (i think that is how it would be described but I could just be mixing a lot if info together and that's what my brain filed it under) in my blood stream to increase the chances of a positive test. You know there's a real problem when you are hoping for a positive result. LOL.

First, I have a question or two for you. You mentioned the headaches but didn't say when they started. At first it sounded like everything happened over the period of the last nine months, but then later you mentioned you were 15.

I'm interested for several reasons. Some research seems to indicate that there is a progression of the symptoms. I thought I had read headaches and possibly chills or fever were the first to occur. Someone with more experience, please correct me if I'm wrong. In addition to that, with the exception of the paralysis you could have been writing my story.

By the way, I also have twitching at night which I only found out about because one day my husband complained that I woke him. I asked him how long it had been occurring and his answer was at least a year (I wanted to strangle him). I also have the pain through one eye. That is by far one of the worse pain "symptoms" I have.

Traveler (or anyone else who want's to chime in),

I told you that we would be having many discussions. LOL.

I think something may have been overlooked because there was so many things to address. The paralysis in Chris's face got subsumed by the discussion about MS, but Bell's Palsy is a common symptom of Lyme. Does his description fit the presentation of Bell's Palsy? The research I did seems to indicate that Bell's Palsy is one of the first symptoms, or is that just the impression I got from people trying to sum everything up into a couple of paragraphs?

Do you know of any information for interpreting Igenex testing for the Co-infection panels? I particularly interested in Bartonella and Babesia. Or are they just positive or negative? Is Igenex the best lab to have the co-infection panels run?

Originally, I was going to hold off on getting any testing done for the Co-infections, but now I am reconsidering. I'm thinking that given the results I've had so far with the Olive Leaf Extract there is a high probability I will get a positive result, so why wait and have to get another order signed and have blood drawn all over again, when I can save argument (with my doctor) and time. The other reason is somewhat backwards logic, but here goes. If my Western Blot is borderline, but I test positive for a co-infection then my borderline result would be a stronger argument for a positive Lyme diagnosis (at least clinically).

Is there any information on the accuracy and specificity for the Co-infection panel? Actually, I think that as far as specificity goes I thought I read somewhere else that all labs test for a couple specific strains and then possibly test for a few others on a rotating basis. So if that's true would the test results indicate which strains were tested for?

You said that one of the bands Chris tested positive for was a European strain. Do a lot of people in North American test positive on that band? Couldn't a positive for that band require different treatment? I thought I read somewhere that the strains in Europe were different and there was little overlap. If that were true it would be interesting to see if Chris traveled to Europe at some time before his symptoms started. Sorry that's the Scientist in me - Questions? Questions? Questions? then try putting the puzzle pieces together.

Thought I had read somewhere else that people tested positive for MS due to lesions in the brain and then after being treated for the Lyme a new MRI showed no lesions. Is this why you cautioned about assuming the Lyme diagnosis was wrong and delaying treatment (for the Lyme)? I would expect that Chris would be able to treat for both, unless there were interactions between the medication for MS and medication/herbs for Lyme.

Chris mentioned difficulty pronouncing multisyllabic words. I know that Dr Burrascano's checklist has "word loss" as one of the items. When I first read that, I was like I definitely have that one. I have trouble pulling words out of my brain. My family is like "just say it", but even though I know what I want to say the word just isn't there. For me, this is the progression of one of my symptoms. At first when I noticed it, my brain would pull out the wrong word (although it still happens but less frequently). For example, I put my son's dinner plate down in front of him and told him "eat the refrigerator". Now I notice that I do have problems pulling out long words. I also didn't think about pronunciation problems until I read this but my son has been telling me I am pronouncing words wrong. Thank you Chris!

So I guess the question there would be, did I interpret the questionnaire correctly? or is this a symptom that comes up often?

Balance problems. I started out with walking into walls and have progressed to falling down from a complete stand still. Now, my son dreads trips to Target because I fall there a lot. I don't know what causes it, other than for some reason I end up studded stepping and sometimes lose my balance. Not sure why Target other than its possible that the flooring may be laid down on top of a concrete slab and there's no give so I over balance. The only other place it has happened seems to be when I was walking on a concrete sidewalk. So is balance problems a symptom that has been seen.

I actually would expect both the difficulty with words and balance to be expected for MS given the lesions, but if Lyme also causes lesions both of those could be a result of Lyme too.

Another symptom that Chris mentioned was rib pain. I have that as well and I'm sure that's on Dr Burrascano's checklist. Again, I know some of the symptoms on the checklist are specifically for co-infections. Does anyone know which infection this goes with?

I know there are more questions I have but my brain has officially stopped working for the night.

Chris thanks for all the info you shared. Thanks to everyone who responded.

Have a nice day (or more importantly a nice long, restful sleep.

Kim

gkamom: in terms of symptom progression, it is different for everyone. Really. None of us have/had the same experience with this disease.

Igenex does run co-infection labs, but they are less reliable than their Lyme labs. There is no gold standard lab for co-infections, which is why you need a good LLMD to diagnose by symptoms.

And yes, balance problems are common.

It is hard to differentiate what symptoms go with what infection as they often overlap.