Lyme, Other Infection or Autoimmune?

Hi everyone, thanks for taking the time to look at my thread. I'm feeling completely lost and not sure what to do, so I figured I would post my story as well as my test results and see if anyone has an opinion. It's a shot in the dark, but here goes.

I'm a 28 year old male, typically pretty healthy. It started about October-November of 2014. I moved into a basement apartment in Guelph, Ontario where I was attending school. The owner kept a few horses and other animals on the property. Things were fine for a while, however, I caught some sort of bad infection and I felt extremely fatigued for a few days, and then I developed a REALLY bad cough for about a month, followed by a weird chest infection. My chest felt very strange, and I visited ER several times worrying about a heart attack. That subsided after a while and things seemed fine. I decided to move out into another apartment, worrying about mold or something else causing the chest infection.

In January, I moved into a new apartment. This is roughly when things really started getting bad. I felt an odd pinch-like pain in my right wrist. I figured I may have sprained it from too much school or computer use, so I rested it best I could while toughing it out through school. I saw a walk-in doctor who suggested tendonitis, and a neurologist who said it's also dequervains tendonitis. A few weeks later, I felt an identical pain in my left wrist while carrying groceries. Progressively over last spring and summer the pain spread from my wrists, up to both shoulders and into my hands/fingers. In November/December of 2015, I started getting pain in the front of both ankles and up my shins/sides of my calves. For at least four months now I've been getting twitches in my muscles, and vibration/running ants feelings. I've also had bad anxiety, some chest pain, week long headaches. I have had very little visible swelling that I've noticed, but some joints sometimes appear red/inflamed.

I have NOT had any flu like symptoms or nausea, and no major fatigue (other than the initial few days). Nor do I recall any tick bite or rash, however I do go camping 2-3 times a year and as I said before I lived in the basement of a house that had various animals like horses. My pain feels like it's in my tendons, muscles and joints, and is very persistent. Typically worse at the end of the day. Feels like a deep pain most of the time, and sharp in specific areas such as my shoulders. It's really interfering with my life, and I'm not sure what to do from here.

Family doctor told me recently it could be "just in my head". He gave me some steroids to try to see if its autoimmune, but I have not taken them in case this is Lyme. From what I understand, steroids could exacerbate Lyme or other infections. A neurologist recently told me he does not believe it's neurological. I've been through three physiotherapists and a chiropractor to no avail. Unfortunately in Canada, it takes ages to see specialists and my rheumatologist appointment is not until the end of May. I'm terrified whats happening to me is becoming ever more permanent.

My question is basically, does this sound like some sort of infection like Lyme etc? Or does this sound auto immune? I've had a barrage of blood work from the family doctor for ANA, RF, etc and it's all come back negative. Brain MRI was also normal.

Below are my IgeneX test results. Thanks again for your time, and I appreciate any insight at all.

IgM:
VIEW IMAGE
IgG:
VIEW IMAGE

Post Edited (saiyaex) : 1/20/2016 3:19:54 PM (GMT-7)

sarahm620 said...
Hi saiyaex,

If you look at your IgG, you can see that both the 31 and 41 bands which are starred are positive. These bands are lyme specific. Do you need help finding a LLMD?

Even though they are IgG, that does not mean that you don't have Lyme anymore. You have an infection that needs to be treated, especially with the 41 response on your IgM.

lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

Thanks for the reply Sarah. I've been seeing a LLND here in Ontario, but she says my symptoms are not typical of Lyme. Perhaps it could be some form of other infection. Not sure what to do from here.

Hi Saiyaex,
Welcome to our community! I'm so glad you found us.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

I wouldn't say that it's an autoimmune issue that you are having, simply because you are dealing with mainly Neuro issues, but I would suggest that you may have Neuro Lyme and/or Bartonella as both of those infections can hit the nervous system alone.

Also, because you have positive responses or an IND response on your Igenex tests of bands 18, 31, 34, 41, and 58 - you have Lyme disease. According to the site I use to interpret these results (see below), bands 31 & 34 are both Lyme specific(also see below).

Here is the site that I use to help interpret these test results. I like it best because it gives supporting PubMed articles.: www.oocities.org/hotsprings/oasis/6455/western-blot.txt

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG means that the infection is at a later stage.

The more +'s you have beside a number, the stronger the reaction.

IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There is only one on the over 300 known strains of Lyme that is considered Bb, ss. Nothing else will turn a Lyme specific band positive other than Lyme disease - - even though there are over 100 different strains of Borrelia in the US that cause human illness.

Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

Band 31 is, for some odd reason, now disputed about being Lyme specific. Here are a few of the supporting articles showing that it's Lyme specific. :
www.ncbi.nlm.nih.gov/pubmed/1520966


www.ncbi.nlm.nih.gov/pubmed/9440203


www.ncbi.nlm.nih.gov/pubmed/8406878


www.ncbi.nlm.nih.gov/pubmed/8005219


www.ncbi.nlm.nih.gov/pubmed/10030131


And more references can be found here:
www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

Band 18 indicates a specific portion of the tail end of the bacteria.

Band 31 indicates OspA (Outer Surface Protein "A") and is Lyme specific.

Band 34 indicates OspB (Outer Surface Protein "B") and is Lyme specific.

Band 41 indicates a different portion of the tail than band 18.

Band 58 is thought to indicate Borrelia Afzelii - a European strain of Lyme disease.

I would encourage you to email our Moderator "Girlie" as she has some options for doctors that you might be able to take advantage of - or I have a few options as well. You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your province and area that you would like to find a LLMD in and I will be happy to share the names I have.​

In order to get recommendations from other Canadians in our community, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

sarahm620 said...
Actually no, saiyaex. As I said, the bands are Lyme specific. That means it is not some other infection.

Has your LLND seen the test results? Because it's IND from Igenex.

Just trying to help.

I really appreciate it, I'm going to really look into this further.

Were you tested for any viruses (EBV, HHV-6, CMV, etc)? Sometimes those become re-activated with Lyme. Band 31 can sometimes cross-react with EBV and Igenex offers an epitope test on that band to rule out EBV. The test is about $100 if you ran it on the IGG. Igenex keeps your blood for a few months after so that you can add-on tests if you wish. Your doctor would just need to fax in the order form from their web site. I ended up having this test done and it came back Positive for Borellia B.

Also, did they test your CD-57? It is not a direct indicator of Lyme but possibly in conjunction with your IND Igenex test it would make you feel more confident in your diagnosis.

I too have an IND Igenex result and my CD-57 was 41. Anything under 60 points to a chronic infection of some sort. For me it just gave me validation that something was going on and it wasn't just "anxiety".

k07 said...
Were you tested for any viruses (EBV, HHV-6, CMV, etc)? Sometimes those become re-activated with Lyme. Band 31 can sometimes cross-react with EBV and Igenex offers an epitope test on that band to rule out EBV. The test is about $100 if you ran it on the IGG. Igenex keeps your blood for a few months after so that you can add-on tests if you wish. Your doctor would just need to fax in the order form from their web site. I ended up having this test done and it came back Positive for Borellia B.

Also, did they test your CD-57? It is not a direct indicator of Lyme but possibly in conjunction with your IND Igenex test it would make you feel more confident in your diagnosis.

I too have an IND Igenex result and my CD-57 was 41. Anything under 60 points to a chronic infection of some sort. For me it just gave me validation that something was going on and it wasn't just "anxiety".

I wasn't tested for any other viruses, which was actually one of the main reasons I started this post. Didn't know where to begin with them. I believe I'll be doing some form of extra testing for Lyme, but my LLND is contacting me about it tomorrow.

Thanks for the advice.

k07, just want to echo what Trav said: they are lyme specific bands. They do not cross react with viruses.

I'm not sure why your LLND thought your symptoms don't sound like Lymes. In the "New to Lyme?...Start here!!" threat, I believe all of your symptoms are included in there. Many of us have all had symptoms very similar to yours.

Welcome, Saiyaex - I am a fellow Canadian from B.C.

I have a couple names of MD's treating LD in Ontario. i know one of them is not ILADS, but is 'lyme friendly' (unless he has become a member recently)
The second one - I have contact information, only...not info on whether she is ILADS member.

I also have names of some LLND's, and one practitioner trained in Traditional Chinese Medicine.

So, if you are wanting to go the antibiotic route...then you will need to go to an MD...as the ND's in Ontario aren't licensed to prescribe antibiotics. But, they will treat you with herbals

When my husband was tested, he only had band 31 and 41 positive (on the 'list') - so our LLND recommended he do the Epitope test - I think it was $100 for confirmation...he did and he was positive.
This same LLND refused treating another forum member because his/her WB test was not positive. Although, ILADS teaches that lyme should be a 'clinical' diagnosis.
I'm thinking the dr.'s are getting worried about being targeted...and want to have proof from the Igenex test that the patient was indeed positive.

You can email me saiyaex if you want the information on the Dr.'s in Ontario.

I have never had any flu-like symptoms...or fatigue...those are two common symptoms...but we are all different...
Unfortunately, that was one of the reasons I didn't pursue Lyme as a possible diagnosis...I kept reading: bulls eye rash (no), flu-like symptoms (no), fatigue (no)....

My very first symptom was radiculitis - neck, left shoulder blade area, arm, hand.
When I was suspecting lyme, I thought it was in addition to my radiculitis (pinched nerve symptoms)...until I did some reading...and that is a symptom of lyme.

That Dr. is incorrect...everyone's symptoms are different.

If you email me, I will give you some more options.

okay - I'll look for it.

"Lyme, Other Infection or Autoimmune?" - sadly for most of us it's not OR but AND here:

Borrelia never comes in alone, but with friends (co-infections), and it generates/maintains a remarkable palette of autoimmune disorders...