Since I got my positive IGM, negative IGG, indeterminate IFA last week I have been poring over the results, reading all about bands and cross-reactivity, and trying to make sense of it all.
Having read what I've read about EBV and other infections I am beginning to wonder if it was a false positive. My symptoms have been mainly psychological (anxiety, MAJOR panic attacks, OCD-spectrum), and hormonal/adrenal (major hormonal insufficiency and adrenal exhaustion).
I've also had a lot of nausea and digestive issues, night sweats on and off since I was 18, dizziness and "off-balance" feelings, some mystery rashes/itching, tons of hives when I was a kid, etc.
I grew up in rural southeastern PA with dogs and horses and spent my summers at a camp in the mountains in VT. My mom has chronic Lyme and older sister almost surely does too. Dad has been successfully treated for "RA" with abx.
Never had a bullseye rash or deer tick pulled of me, but plenty of "regular" ticks when I was little.
It's obvious to me that there is SOMETHING going on with some sort of infection, but how in the world do I know it's actually Lyme?
My Igenex results are as follows:
IFA 1:40 IND
IGM 31 ++ 34 IND 39 IND 41 ++ 58 + 83-93 IND
IGG 23-25 IND 39 IND 41 ++ 58 +
I posted last week asking about help strategizing re: co's, EBV, yeast, etc but didn't receive any replies so I'm trying again.
How can I figure out if this REALLY is LYME and not some other conglomeration of chronic infections?
In your experienced opinions, do my results look like a true positive for Lyme? What are the chances of false positive?
THANK YOU!
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Well your test looks pretty convincing to me; but lyme disease is actually a "clinical" diagnosis. The test is just used to back up that diagnosis.
Seeing a LLMD and getting their expertise diagnosis is really your best bet.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I think the only way to know is to test by antibiotics. If you do a trial of two different antibiotics over several months, and do not herx, or notice any benefit, then maybe it's not Lyme.
Were you tested for co-infections? Any positive co-infections would push the likelihood of Lyme up.
And I agree, you need to be diagnosed by a LLMD. Quite often LLMDs who are unsure, still do the antibiotic thing as a test, to gauge how your body reacts.
Posts: 584 | From NY | Registered: Feb 2009
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My LLMD (I've only had two appointments so far) seems to be satisfied that it's Lyme. I am getting the co-infection tests done at my next appointment in about 3 weeks.
LLMD doesn't want to start me on abx yet -- he has me detoxing, working on getting my mercury levels down (I am not hideously mercury toxic but do have some exposure). He also wants me to correct a vit D deficiency and an iodine deficiency.
So -- I'm doing lots of supplements and detox right now.
Should I ask him for an abx "challenge"? Or the band 31 confirmation test?
I know my results do appear positive but it's all the potential for cross-reactivity that has me going crazy... since I only have "IND" on the lyme-specific bands.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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posted
You are struggling with the same question many of us have struggled with. Unfortunately your test results don't necessarily support or dismiss lyme. They are suggestive that it is possible you could have lyme disease and/or babesia given some of your symptoms. Unless we culture the bacteria from our blood, we can never be sure.
My test results were similar to yours...IgM positive and IgG negative. I can tell you I read every piece of scientific literature I could get my hands on. I spoke to some of the top doctors and researchers from both sides of the fence searching for a concrete answer to whether I had lyme or not. Ultimately my decision was to treat lyme and company WHILE continuing to search for other medical explanations/answers for my illness.
Over the course of time, it became clear that the antibiotics were working and some of the best doctors Boston has to offer could not come up with another explanation. Today I am well.
It is important to have a LLMD help you to sift through this as they have more experience with the clinical picture of tick-borne diseases.
Posts: 561 | From mass | Registered: Jul 2007
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posted
Thanks KS -- I feel like that's what I'm doing now -- reading everything I can get my hands on... and it's just confusing me even more!
I know I have a high-risk background given where I grew up, etc. And my mom has it. And most likely Dad and sister as well.
It is so frustrating not KNOWING.
I have been in the dark for way too long. I just want a concrete answer! So frustrating.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
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posted
All my test so far were completely negative. I showed no bands of any kind. I only have symptoms.
I spent six months looking for a concrete answer (and still am), but I began treatment for lyme a week ago and I must say I feel better. I went grocery shopping today with only a little feeling like I was going to pass out.
I know I wish this disease was different also. I wish someone would just come up with a test that said you got it or you dont, 100%. Hopefully, that will happen in our future.
It really depends on you... I went six months not knowing what was wrong with me and dr's saying anxiety or post viral syndrome. The suffering finally got to much and the only person with a plan for me to get out of this mess was an LLMD I saw.
People will say do this.. do that.. but you have to make the final decision. Also, I highly recommend not forgetting to live your life as much as you can. If you start ABX and feel better awesome... I would stick with that.
People will tell you, you have to detox, you have to take a certain supplement, you have to take these herbs, you need to use this machine, you need to keep your body hot, you need to keep your body cold, you have to follow this diet.
The information on these sites can be overwhelming. Honestly just do what you feel comfortable and good doing. Sometimes you can get so caught up in trying to feel better you forget youre feeling better. Your body is a miraculous thing.
I find it amazing reading the success stories. Some of those who got better took years and years of abx, supplements, diets etc etc. While some took abx for 4 or 5 months didnt worry about a diet really, never mentioned supplements, herbs and they got better. The mind body connection can be a wonderful or your worst enemy.
Stay positive you will find help soon and start feeling better. Go with your gut instinct, you cant feel any worse right haha.
Posts: 286 | From St. Louis | Registered: Dec 2009
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posted
My case started as a severe bout of strep b. I was on several different ab's without any relief. Kept having fevers, ongoing fatigue...doctor knew something was going on, but wasn't sure what. He sent me to an ID doc. I know what you are all thinking, but he turned out to be wonderful, and was a life saver for me. First visit he heard a heart murmur so thought it could be endocarditis from strep b, so I was sent for emergency echo. It was negative, but my heart was enlarged and obviously pumping really fast and furious. ID said he sees tons of cases that have same s/s of me, but that I looked "terrible". He ran every test known to man. I'm an Oncology RN, so I knew alot of what he was worried about. About 2 wks in if labs, scans, ultrasounds, he did a Lyme elisa. Asked if I remember a rash. No-he said that didn't really mean anything bc they like to hide. I life in Seattle, and we do walk our dogs in wooded areas. Although he didn't believe Lyme wasn't really around Seattle. The few cases he has had, have all been transplants. One wk later I get a call back that Elisa came back positive. He started me on Doxy. During this time, I was getting worse and worse. Terrible headaches, insomnia, fatigue unlike anything I've ever imagined before. I was on doxy a week and I went in to see him, I had been vomiting for 24 hours, photophobia, headache, fever. He was worried about Lyme meningitis. So he admitted me. They did a Spinal tap withou conscious sedation. Word of advice.....please do not ever to this to your patient. It is awful. Especially if the physician is trying to tell jokes, and I'm on telemetry,and you can just hear my heart racing. AWFUL EXPERIENCE, my back heart for two wks. Anyway, that came back negative. However, they forgot to do Lyme antibody on the CSF fluid, AND confirm Western Blot on blood after elisa. What the hell??? Anyway, I made them discharge me the next day I felt like crap and the pillows were made of cardboard. Although the care was good. A few days later, I go back in to my doc and he does a western blot to confirm and it came back positive. He decided to switch me to rocephin bc doxy was making me really nauseated. Two wks into IV rocephin he draws another Elisa, it came back negative. Then he begins questioning maybe I don't have Lyme afterall. Not knowing that you should not draw these test during antibiotics or within two wks pre or post. After 28 days of rocephin he dc'd it. I didn't feel much relief at all. In fact, things were very rough during this time, I had already lost 20 lbs in 3 months. He kept sending me to various docs, rheumatoid, oncology, etc. My vision begins to go blurry, having severe eye pain. He has another western blot drawn, it comes back positive. I decide it is time to go to LLMD out east, my doc agrees. My first appt was January 5. Treatment has been rough, but I'm feeling like it is worth it, and I will keep going,
Posts: 84 | From Seattle, WA | Registered: Sep 2009
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