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Western blot was positive with equivocal Erlichia

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Posted 7/25/2018 2:12 AM (GMT 0)
I just got results today. I would kind like to know how to go forward.

Background I would have gotten Lyme about 12 years ago. It’s never been treated. My thyroid dr suggested to fibro dr to test Lyme. She agreed. I want to know for late stage how to go forward. The fibro dr will be treating me. If she refuses then it’s move or find an llmd. I’ve got other illnesses. We seemed to stabilize it then I got much worse over the last 2 years.

Feel free to just leave links on what I should check out and things I should know. Thanks!
Posted 7/25/2018 2:41 AM (GMT 0)
I tested through igenex. The Erlich was 80 for IgA Ifa IgG and over 160 is considered positive. I’m reading through the top thread now.

I guess I’m trying to figure out how long I should be on antibiotics. I highly doubt 28 days will work. I’m looking into buhler and the herbs. I don’t want to mess this up. I was thinking herbs plus antibiotics. I’m allergic to doxycycline. I’ve done some research but want to come up with a plan. I see the dr in 2 weeks. I’ve done some research now I need to nail it down. I’ve been told twice I didn’t have it so I delayed extra research until confirmed. Thanks everyone.
Posted 7/25/2018 7:30 AM (GMT 0)

Val319 said...
I just got results today. I would kind like to know how to go forward.

Background I would have gotten Lyme about 12 years ago. It’s never been treated. My thyroid dr suggested to fibro dr to test Lyme. She agreed. I want to know for late stage how to go forward. The fibro dr will be treating me. If she refuses then it’s move or find an llmd. I’ve got other illnesses. We seemed to stabilize it then I got much worse over the last 2 years.

Feel free to just leave links on what I should check out and things I should know. Thanks!

Is the fibro Dr. lyme literate? If not, I wouldn't have her treat you...as a lot of knowledge is needed....with chronic lyme.
What are your other illnesses? It's possible that lyme is the reason for them.
Posted 7/25/2018 7:32 AM (GMT 0)

Val319 said...
I tested through igenex. The Erlich was 80 for IgA Ifa IgG and over 160 is considered positive. I’m reading through the top thread now.

I guess I’m trying to figure out how long I should be on antibiotics. I highly doubt 28 days will work. I’m looking into buhler and the herbs. I don’t want to mess this up. I was thinking herbs plus antibiotics. I’m allergic to doxycycline. I’ve done some research but want to come up with a plan. I see the dr in 2 weeks. I’ve done some research now I need to nail it down. I’ve been told twice I didn’t have it so I delayed extra research until confirmed. Thanks everyone.

You didn't get a Western Blot? And did you not get a lyme test? Just an ehrlichia?

After 12 years, it will not be 28 days of abx. It will be months to years of treatment.

There are many combinations of antibiotics - doxy isn't necessary.
Posted 7/25/2018 9:19 AM (GMT 0)
I did get the western blot. Lyme western blot IgG positive. Band 39 + 41 ++
IgM 31 Indeterminate 41 +

Western blot and coinfections testing was ran. I won’t know until my visit in two weeks if the fibro dr is Lyme literate. My thyroid specialist is amazing and knows all of this. I would have to move states, I’m not close enough for him to handle this since he would be very hands on.


Other illnesses: Graves’ disease, Addison’s disease, panic, anxiety attacks, depression, PTSD, extreme fatigue, right knee diagnosed with runners knee 2 years ago (out of the blue it started acting up), tachycardia, plantar fasciitis that gets worse with exercise (the dr sucked so it may not be plantar fasciitis), fibro, heart murmur when diagnosed with Graves came out of nowhere, chronic pain, post exercise fatigue, just got anemia normal, working on raising low D was 26 while taking 10,000IU D3 a day, insomnia, lower back pain, sciatic pain, Stiff muscles, knots in my muscles I’m just really noticing them increasing in the last 2 years, osteopenia, seasonal allergies, bronchitis about 2 times a year, sinus infection about 2 times a year, my body clicks, nausea, dizziness, jaw pain, vision varies, oh yeah light sensitivity, heat sensitivity, my stomach of steel is no longer steel it’s doing better on probiotics and keto, loss of balance, lack of hunger, nothing tastes good anymore, I no longer care for most alcohol no meds added to cause this (this is odd because I used to be the 2 dirty gin martinis before bed now it sounds revolting), I have extremely weird drug reactions like Wellbutrin makes me want to drink, Tinizadine on day 3 ( was taking with topamaxj made me wake in the middle of the night feeling like my teeth were being ripped out with plyers , neurotin made my stomach twitch and raw, I cannot take anything like an SSRI due to severe side effects

My psychiatrist is running a dna thingy about medication due to my severe and odd medication reactions. Did the Horowitz Lyme-MSIDS questionnaire and tried to be a bit conservative 109.

Post Edited (Val319) : 7/25/2018 7:04:56 AM (GMT-6)

Posted 7/25/2018 10:17 AM (GMT 0)
Details- it’s long:Why we ran western blot. I’ve been sick for years. I started getting progress. about well 2 years ago it got worse. I could no longer go to the gym. I just leave home when necessary. My thyroid specialist is amazing. He said “it’s Lyme”. Asked primary dr to run western blot. I know most of you are thinking “I’m sure that went over well”. She threw a fit. How dare he suggest you have lyme. This isn’t Connecticut. I reminded her I moved here after getting really sick. She complained was rude and then said she’d run it “western blot” last October. Called me saying I was negative. I get copies of all tests. Saw no bands. Yes I’ve been searching for a new primary. Sent to thyroid dr “that’s not western blot it’s IFA you need western blot.” That was December. So I wanted a fibro specialist and got the referral. Waited a few months. She agreed with run western blot. She wants to be sure it isn’t Lyme too. I went to labcorp. Everyone cringe. Had blood drawn. A week later got a letter saying “you don’t have lyme”. Ran errands the next week and got a copy. No bands. Dr request for western blot, coinfections and black mold testing (saw the paperwork) they put in as only EIA with reflex and they looked at my blood for the mold. Turns out this is what labcorp does. So finally found Igenex. Fibro dr signed off no problem. Now we just got results.

My thyroid/adrenal dr is going off of years of my symptoms and me getting worse. We got my thyroid finally stable but I’ve had conversion problems and all kinds of weird things. I went through at least 5years of lucky to get 3-4 hours of sleep. Then due to dr having problems understanding what was happening I had to find a specialist. I found this specialist and started sleeping at night for 8 hours. The excess what I called a flare started this time last year. After the insomnia I slept 10 hours a day for 2 weeks. This came back in the fall hence my request for Lyme and then fibro specialist. January after all the stress I crashed. I was sleeping 12+ hours a day for months. Now I’m having insomnia. I’m having sleeping issues but went keto after Lyme testing.

I never had the bullseye rash. We never did tick checks. I get other weird funky rashes that everyone assumed was allergies other than thyroid dr. He said go gluten free. I did but they stayed. Gluten removal didn’t do anything.
Posted 7/25/2018 1:44 PM (GMT 0)
Hi Val319! whenever a patient has a vast array of symptoms across body systems it's def a strong sign underlying infections may be at play and should be carefully considered. Imo best doctors to evaluate possibility of tick-borne infections would be a quality lyme literate doctor.

A couple other resources. I've always liked Dr Horowitz's MSIDS questionnaire, it's just one more tool to help patient get an idea for how likely tick-borne infections are at play in their health issues: www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html

In regards to WB for lyme, here is how Horowitz breaks it down, if you have any of the following bands you have been exposed to lyme: /scontent.fphx1-2.fna.fbcdn.net/v/t1.0-9/1511672_818342531524591_924613633_n.jpg?_nc_cat=0&oh=7c16fa052b9d1e5d469adda046e9c05d&oe=5BD76FFE

Many patients never remember the initial tick bite. I didn't, and I don't recall a bulls-eye rash either. Bulls-eye doesn't happen in every case, plus given the vast array of species and strains they are each likely to manifest in different ways.

Post Edited (sebreg) : 7/25/2018 7:47:27 AM (GMT-6)

Posted 7/25/2018 2:59 PM (GMT 0)
Thank you!

I’m going to see the fibro dr at my appt and see if her or the other person in the office is qualified. I was impressed she actually ran a ton of tests to be sure it wasn’t something else. She had no problem with my western blot request.

I did take the MSIDS test. I tried answering conservatively. I got 109.

I will check out the other link. I only remember once when we had been in the woods the night before. That morning we saw ticks on each other. Not like either of us would have noticed a tiny one. It didn’t seem like Lyme was a word my friend or I knew at that point. I remember being asked to go to the beach with leaches and declined. Nothing about Lyme.
Posted 7/25/2018 5:00 PM (GMT 0)

Val319 said...
I did get the western blot. Lyme western blot IgG positive. Band 39 + 41 ++
IgM 31 Indeterminate 41 +

Western blot and coinfections testing was ran. I won’t know until my visit in two weeks if the fibro dr is Lyme literate. My thyroid specialist is amazing and knows all of this. I would have to move states, I’m not close enough for him to handle this since he would be very hands on.


Other illnesses: Graves’ disease, Addison’s disease, panic, anxiety attacks, depression, PTSD, extreme fatigue, right knee diagnosed with runners knee 2 years ago (out of the blue it started acting up), tachycardia, plantar fasciitis that gets worse with exercise (the dr sucked so it may not be plantar fasciitis), fibro, heart murmur when diagnosed with Graves came out of nowhere, chronic pain, post exercise fatigue, just got anemia normal, working on raising low D was 26 while taking 10,000IU D3 a day, insomnia, lower back pain, sciatic pain, Stiff muscles, knots in my muscles I’m just really noticing them increasing in the last 2 years, osteopenia, seasonal allergies, bronchitis about 2 times a year, sinus infection about 2 times a year, my body clicks, nausea, dizziness, jaw pain, vision varies, oh yeah light sensitivity, heat sensitivity, my stomach of steel is no longer steel it’s doing better on probiotics and keto, loss of balance, lack of hunger, nothing tastes good anymore, I no longer care for most alcohol no meds added to cause this (this is odd because I used to be the 2 dirty gin martinis before bed now it sounds revolting), I have extremely weird drug reactions like Wellbutrin makes me want to drink, Tinizadine on day 3 ( was taking with topamaxj made me wake in the middle of the night feeling like my teeth were being ripped out with plyers , neurotin made my stomach twitch and raw, I cannot take anything like an SSRI due to severe side effects

My psychiatrist is running a dna thingy about medication due to my severe and odd medication reactions. Did the Horowitz Lyme-MSIDS questionnaire and tried to be a bit conservative 109.


your test results back up a clinical disgnosis.

What is 109 on the questionnaire - is that a Probable or.....
I can't remember the breakdown

You've got a lot going on with your health - definitely multi systemic.
No doubt in my mind - you have Lyme disease.
Posted 7/25/2018 9:54 PM (GMT 0)
I was trying to remember how I scored on that test when I originally took it, I think it was in the 80s or 90s. Which got me thinking with your question Girlie, what were the parameters for the scores again...

Tracked them down here:
If you scored 46 or more, you have a high probability of a tick-borne disorder and should see a healthcare
provider for further evaluation.
If you scored between 21 and 45, you possibly have a tick-borne disorder and should see a healthcare
provider for further evaluation.
If you scored under 21, you are not likely to have a tick-borne disorder.
Posted 7/26/2018 12:03 AM (GMT 0)
It said highly probable.

Post Edited (Val319) : 7/25/2018 9:55:43 PM (GMT-6)

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