I just got my Igenex test results and need some help interpreting them. My naturopath (I ordered this test through her) said that it is negative but I have my doubts. I have many weird symptoms and many symptoms of Lyme, even doctors say that there is something wrong with me but can not pinpoint it since all my blood tests are normal, except white blood cell count which is really low.
Here are my IgeneX test results:
Multiplex B. Burgdorferi (Whole Blood and Serum): Genomic & Plasmid - Negative
IFA 1:40 - Indeterminate
IgM Western Blot - Positive: (only positive / IND bands are shown below): 23-25: ++ 31: ++++ 39: IND 41: ++ 83-93: +
IgG Western Blot - Negative: 41: +
My naturopath says that since IgG Western Blot is negative then I don't have Lyme, even though IgM is positive because IgG is responsible for the chronic Lyme infection. She suspects that I have some other infection that makes my IgM results positive. However, I suspect my body does not produce enough antibodies, e.g. my IgG allergy tests were all negative even though I do have food intolerances (and a lot of them). And I have many symptoms of Lyme disease.
Please help me interpret these results. I really do not know what else to do. I am sick for more than 3 years now, I am getting worse and doctors are not of any help.
Thank you very much!
Posted by Leelee (Member # 19112) on :
Hi Kive,
I am not even close to being an expert, but IMO your blood work indicates a high probability of Lyme.
In particular, bands 83-93 are Lyme specific.
Someone else will come along with a lot better information than I can offer, but I imagine most will suspect Lyme as well, especially since you have symptoms.
Posted by TF (Member # 14183) on :
Please read "Dr. C's Western Blot Explanation." It is near the top of the list of threads on "Medical Questions" forum.
Here are a few sentences from his explanation:
"Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result."
Kive, you have a positive IgM Western Blot, so you have lyme disease. Now, you have to get yourself to a good lyme specialist.
I suggest you look under "Support Groups" on the left side of this page and contact those nearest you for names of good doctors. You can also post in "Seeking a Doctor" forum on this site. But, there is nothing like a personal recommendation about a doc.
I recomend you find one who follows the Burrascano lyme treatment guidelines found here:
Read and study these guidelines to find out what good lyme disease treatment looks like. They will also teach you a lot about the disease you have.
When you call a doctor's office to make an appt, ask if he follows the Burrascano protocol. If not, I suggest you try another doc.
I and many of my friends and acquaintances got rid of lyme disease by going to a Burrascano type doc. The doc is the key to getting rid of this disease. That is the most important thing I can tell you.
The doc is the key.
Not all lyme docs are top notch. So, your job is to study the Guidelines and find out what good lyme treatment looks like, then find a doc who will give you good lyme treatment.
Posted by Ocean (Member # 3496) on :
Wow! You've got quite a few positive bands there, you need to find an LLMD. Most doc's know nothing about Lyme disease.
Before I spoke with my first LLMD about my results (his office had called and told me IgM was pos and IgG was neg), I too thought maybe I didn't have Lyme at first.
When I finally spoke with the LLMD (who is a very well known one), I told him my reservations about the neg IgG test, as I am an RN and know that IgG is what normally shows up with a Chronic infection.
He said that there are a few other illnesses that mainly the IgM shows up (I believe he said TB was one). He said that because the Borrelia Burgdorferi is constantly changing, the body is constantly creating new antibodies. Therefore if the body is making new ones every 2 weeks, it will stop making the old ones to become long term antibodies (IgG) because that same organism in the immune system's opinion is no longer there. It thinks it is dead.
Therefore, the body makes new antibodies until the darn borrelia gets attacked and changes yet AGAIN!
It's not a normal bacteria..at ALL!
It may not matter how much you try to explain to your ND, they may not 'get' it. Perhaps they would be willing to read literature on the real borrelia??
Good luck...please please please find an LLMD if you can or you can look into alternative stuff like rife if you want.
Welcome and good luck! Ocean
Posted by peacemama (Member # 17666) on :
Encourage your ND to become a LLND by working with ILADS. Clearly he/she is not one now.
I would say Lyme.
Posted by Geneal (Member # 10375) on :
The Western Blot is an antibody test.
It only shows a positive for antibodies to the disease.
So....you have Lyme specific bands.
Those are bands specific to Lyme disease and nothing else.
Clearly your body is trying to post an immune response,
Thus the positive bands.
Please post in Seeking a Doctor section with your
Your state and city and someone will direct you to a LLMD.
Your health depends on finding a doctor who knows Lyme.
Don't forget the probability of co-infections too.
Testing for those diseases isn't that accurate either.
Hang in there.
Hugs,
Geneal
Posted by Kive (Member # 20730) on :
Thanks all for answering. Yes, looks like it's Lyme. I can not say that I am happy but at least after 3+ years of being sick and going to all kinds of doctors I finally have some answers.
I will post in the Seeking a Doctor section when I process this news:-)
Thanks again,
Kive.
Posted by Lymeorsomething (Member # 16359) on :
Kive, visit the Igenex website as well. The site discusses the igm and igg portions of the western blot...it's worth a look.
Posted by kellyjk4 (Member # 19731) on :
There's really not much I can add that everyone else hasn't covered, except that I had the same issues.
My test was very strongly IgM positive, yet IgG negative - and I've been sick for many years. Once I read Dr. B's Guidelines, it all made sense.
You've come to the right place. I found my dr through lymenet, and everyone here is very helpful and informative.
I've only recently started treatment, so I know how confusing and overwhelming it all is.
When you have questions or need moral support, this is the place to be.
Good luck!
Posted by liesandmorelies (Member # 15323) on :
Welcome!
Not to be redundant, but it appears that you have Lyme.
Get to a LLMD as soon as possible.
Good luck. There are many wonderful people here who can answer many of your questions. There is so much to learn when you just find out you have Lyme. This is a good site to get questions answered and also receive support along the way.
Good Luck =)
Posted by Lymepool (Member # 15827) on :
Greetings Kive,
Here is a website that may help you to gather background information specific to dealing with Lyme in Canada.
quote:Originally posted by Kive: I can not say that I am happy but at least after 3+ years of being sick and going to all kinds of doctors I finally have some answers.
Your comment reminds me of what my LLMD said when he diagnosed me. "The bad news is you have Lyme. The good news is you have Lyme".
Now that you are going to find an LLMD your healing can begin.
Posted by feelfit (Member # 12770) on :
Hi Kive,
I would just add that your ++++ on band 31 is said to indicate a long standing infection. Band 31 rarely shows except in those who have been infected for a long period of time.
Ditto to everything else that others have suggested.
feelfit
Posted by Leelee (Member # 19112) on :
feelfit, you made a very good point.
And the four +'s is a strong showing, IMO.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by TF: [QB] Please read "Dr. C's Western Blot Explanation." It is near the top of the list of threads on "Medical Questions" forum.
Yes, be sure to read it!!!
Band 83-93 means you have the DNA of the Bb! That band alone means you have Lyme.. no question.... then you have other lyme specific bands. It's a no-brainer.
Posted by bettyg (Member # 6147) on :
welcome kive
glad someone referred you to CAN LYME for support!!
since you are from canada, you have many things going against you since ALL of canada only has 1-2 llmds !!
when you post in SEEKING DR. forum, please show the closest USA state to you & largest city in that state in SUBJECT line ok.
please copy your above post and paste it there for text.
go to bottom left hand corner and mark box to receive all replies ok; send
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
Wow, thank you all very much for your support. I didn't expect to get so many replies. Yes, I believe this is a long-standing infection, but I am still perplexed because I do not remember any tick bite or rash. I decided to get tested because I still have unresolved issues and weird symptoms after 1.5 years of gluten-free diet and I read on glutenfreeforum that Lyme is a possibility in this case (huge thanks to CarlaB if you are reading this forum).
I understand that I have very little chance to get treated in Canada, I am willing to travel to USA.
Thank you all very much. I will definitely read more about Lyme on this forum and will check links that you suggested.
Best wishes,
Kive.
Posted by Jin (Member # 11735) on :
Dear Kive, I know CarlaB, so I can pass the thank you on for you if you like! It will warm her heart to know she helped someone. She was the person who mentioned Lyme to me. I never would have thought of it before. Although I had only one positive IgG band, I had an IND on the 41 kDa band in the IgM, and another IND on the IgG for the 31 kDa.
I called Dr. C since I did not know about interpretation. Some people told me I was fine, and others told me I was not. Dr. C feels I could benefit from treatment. My appointment is October 13th. I suspect being bitten 12 years ago, so a long-standing infection would be probable.
I have food intolerances as well, and was told Celiac is an issue for me. Lactose and gluten make me violently ill, so you can imagine how difficult living with two gluten consumers can be. As far as your results go, my only thought was "How many times has this ND been dropped on their head?" It is very apparent you have Lyme. My results were very vague.
Sincerely, Jin
Posted by Pinelady (Member # 18524) on :
Kive they are right. You are positive. Glad your here finally. I am IgG neg. and IgM pos. Most think IgG means recent, IgM means latent. I do know there are Canadians seeing a LLMD here in the states.
Posted by Kive (Member # 20730) on :
Jin, yes, please thank CarlaB for me. I am very grateful that I finally found an answer.
I can not blame my naturopath for not knowing about Lyme disease, I just asked her to sign on my IgeneX requisition form because my family doctor is very uncooperative.
Thanks,
Kive.
Posted by Jin (Member # 11735) on :
Dear Kive, I will be sure to tell CarlaB how thankful you are for her help. She has been wonderful to assist me as well. Finding an answer is great. You do not want to have a terrible disease, but are so tired of wondering and worrying. I agree that PCPs are very difficult to work with. Fortunately, I have a chiro that is much easier to deal with.