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JeanJean
New Member


Date Joined Feb 2018
Total Posts : 4
   Posted 2/22/2018 10:52 AM (GMT -6)   
Hello. I've been having misc. symptoms for about seven years: joint pain, confusion, issues with balance / depth perception, muscle pain, extreme fatigue, sensitivity to cold, various food intolerences, shaking feeling at base of skull and internally, I'm sure there are more I don't remember at this moment.
Everything started after I'd moved to a house on some acerage in SE lower Michigan. I'd never even seen a tick before but while living there had multiple tick bites / known exposures. I have had dogs for my entire adult life and an indoor outdoor cat. I was tested for Lyme when the symptoms initially started and was negative, I was then sent to a variety of doctors, infectious disease, rheumatology, I had X-Rays, MRI, sleep study, a ton of blood tests. Nothing significant ever came back positive. I was told over and over I did not have Lyme symptoms, I started getting all of my medical records and at one point noticed someone had written I had somewhat flat affect and every Dr. I saw after that said I needed to go to therapy. My primary Doctor did fill out FMLA paperwork for me as I was hoping to see someone on the east coast at the time for a second opinion but my employer refused to allow the FMLA time (which is another long story completely). I just quit going to doctors anymore at that point. I read everything I could on Lyme because it was the only thing that made sense to me for my symptoms. I started taking teasel extract, using the sauna regularly at the rec center and cut out all foods that seemed to be making things significantly worse (wheat, cow milk dairy, nightshades) and sort of limped along until the last couple of months.

A little over two years ago I moved to the northwest area of lower Michigan, near the lake. I continued to have pets. I continued to encounter ticks on them and on myself. I regularly hike on trails in the woods. I lost access to the sauna as there is no rec center here. Last fall I had a badly engorged tick on my back, there was no bullseye but it was extremely swollen, I had nausea, fatigue and worsening joint pain. I didn't see a doctor immediately. I had not found a physician here and figured I wouldn't get any help due to my previous experiences and the worsening of symptoms sort of faded back into what I had been experiencing prior to the bite. Recently though I started having episodes of worsened confusion, racing heart, vivid nightmares, I would wake up sometimes hourly with my whole body shaking and it would take a while to calm down. I could not deal with stress at all. It was like my body wanted to completely shut down with even minor stress, like making a small decision I would normally barely have to think about.

I found a new doctor and was given a series of tests. I asked for Lyme and she added it. Everything except Lyme came back normal.

Lyme results:
IgG IMMUNOBLOT Negative
IgG BAND(S) No bands detected
IgM IMMUNOBLOT Positive
IgM BAND(S) p41, p39, p23, kDa
INTERPRETATION SEE COMMENTS
Consistent with early infection with Borrelia burgdorferi. A new serum specimen should be submitted in 14-21 days to demonstrate seroconversion of IgG. IgM blot criteria is of diagnostic utility only during the first 4 weeks of early Lyme disease. -------------------ADDITIONAL INFORMATION------------------- CDC criteria require >=5 bands for IgG or >=2 bands for IgM for the Immunoblot to be considered positive. Bands (e.g.,p41) may be detected in patients without Lyme disease, and patterns not meeting the CDC criteria should be interpreted with caution. Immunoblot should be ordered only on specimens that are positive or equivocal by a FDA-licensed Lyme disease antibody screening test (e.g., EIA). Test Performed by: Mayo Clinic Laboratories - Rochester Superior Drive 3050 Superior Drive NW, Rochester, MN 55901

I was started on Doxycycline 100mg 2X/day. I'm on day thirteen of the fourteen day Rx.

I was referred to Infectious Disease. I saw the doctor there yesterday. He told me that my test was absolutely, no doubt in his mind, no further discussion needed, a false positive. He said I had no symptoms of Lyme (although the only symptom he could name was one swollen joint, he said people with Lyme have only one joint affected and it is always visibly swollen). He could not answer how the specific bands were positive just said I should have never been given the test because it is unreliable and the repeat test would not be ordered and I should stop thinking I have Lyme and immediately stop the Doxy. He also said that since I had seen a Rheumatologist previously that no one was going to be able to find out what was happening with me if she had not...

So anyway, obviously he sucked on many levels.

I guess my questions are: Are these Lyme symptoms? I mean it seems like they are from everything I've read but he is the second doctor to look me straight in the face and say that I do not have Lyme and none of my symptoms are consistent with Lyme. I've been told this so many times by people who seem to be contradicting themselves (many of my symptoms are actually listed on the Lyme handout I was given by his office on my way out) that these are not Lyme symptoms. I feel like I'm in a alternate reality in these office visits.
I updated my primary doctor and she suggested I see an allergist for the food issues I've been having and now a rheumatologist also but has anyone had any success with just continuing to see random specialists? I don't really want to repeat my previous pointless journey through a ton of expensive tests if these are all just Lyme symptoms.
Has anyone had a positive Lyme test and then found it was actually something else?

I am open to any thoughts or experience anyone would be willing to share. I feel (after starting the Doxycycline) that some of my cognitive issues are starting to clear. I spent years being barely able to read with any comprehension but didn't stop trying. I can read on unfamiliar topics without taking breaks and with some understanding now. I am concerned the Rx is not enough and I will go back to my completely clouded brain... I really don't know where to go from here.

Thanks for sticking with me I know it has been long. I have been looking at this forum for a while but have not joined and have been able to find a lot of useful information so thank all of you for that as well!

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 2/22/2018 11:19 AM (GMT -6)   
Welcome! Glad you decided to post. Your story is very similar to that of others I have read here. Your symptoms and history of exposure scream Lyme/tick borne infections IMO.

ID docs like the one you saw really really piss me off. You have a positive serology test and a laundry list of Lyme symptoms and he says to stop treatment right away. What the heck is the deal with these people? Why do most of them seem so hell bent on Lyme patients not getting any treatment?

Anyways,

Sorry to break the bad news, but 14 days of Doxycycline is probably not going to "cure" you (or as we call it, put you in remission).

Most of us have had to visit Lyme Literate (LLMD's) to receive PROPER differential diagnosis and testing and treatment. Sadly, most of the stories I hear from mainstream ID docs have a similar tune to your story.

I think you would be wise to make an appointment with an LLMD. People here can help you find one. Just start a new thread titled with something like "looking for LLMD in "your city/state". In the mean time read everything you can here and ask any questions you have.

Welcome!

Post Edited (Missouri) : 2/22/2018 12:42:24 PM (GMT-7)


JeanJean
New Member


Date Joined Feb 2018
Total Posts : 4
   Posted 2/22/2018 1:42 PM (GMT -6)   
Thank You!
I will make a new thread now.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33895
   Posted 2/22/2018 2:38 PM (GMT -6)   
JeanJean said...
Hello. I've been having misc. symptoms for about seven years: joint pain, confusion, issues with balance / depth perception, muscle pain, extreme fatigue, sensitivity to cold, various food intolerences, shaking feeling at base of skull and internally, I'm sure there are more I don't remember at this moment.
Everything started after I'd moved to a house on some acerage in SE lower Michigan. I'd never even seen a tick before but while living there had multiple tick bites / known exposures. I have had dogs for my entire adult life and an indoor outdoor cat. I was tested for Lyme when the symptoms initially started and was negative, I was then sent to a variety of doctors, infectious disease, rheumatology, I had X-Rays, MRI, sleep study, a ton of blood tests. Nothing significant ever came back positive. I was told over and over I did not have Lyme symptoms, I started getting all of my medical records and at one point noticed someone had written I had somewhat flat affect and every Dr. I saw after that said I needed to go to therapy. My primary Doctor did fill out FMLA paperwork for me as I was hoping to see someone on the east coast at the time for a second opinion but my employer refused to allow the FMLA time (which is another long story completely). I just quit going to doctors anymore at that point. I read everything I could on Lyme because it was the only thing that made sense to me for my symptoms. I started taking teasel extract, using the sauna regularly at the rec center and cut out all foods that seemed to be making things significantly worse (wheat, cow milk dairy, nightshades) and sort of limped along until the last couple of months.

A little over two years ago I moved to the northwest area of lower Michigan, near the lake. I continued to have pets. I continued to encounter ticks on them and on myself. I regularly hike on trails in the woods. I lost access to the sauna as there is no rec center here. Last fall I had a badly engorged tick on my back, there was no bullseye but it was extremely swollen, I had nausea, fatigue and worsening joint pain. I didn't see a doctor immediately. I had not found a physician here and figured I wouldn't get any help due to my previous experiences and the worsening of symptoms sort of faded back into what I had been experiencing prior to the bite. Recently though I started having episodes of worsened confusion, racing heart, vivid nightmares, I would wake up sometimes hourly with my whole body shaking and it would take a while to calm down. I could not deal with stress at all. It was like my body wanted to completely shut down with even minor stress, like making a small decision I would normally barely have to think about.

I found a new doctor and was given a series of tests. I asked for Lyme and she added it. Everything except Lyme came back normal.

Lyme results:
IgG IMMUNOBLOT Negative
IgG BAND(S) No bands detected
IgM IMMUNOBLOT Positive
IgM BAND(S) p41, p39, p23, kDa
INTERPRETATION SEE COMMENTS
Consistent with early infection with Borrelia burgdorferi. A new serum specimen should be submitted in 14-21 days to demonstrate seroconversion of IgG. IgM blot criteria is of diagnostic utility only during the first 4 weeks of early Lyme disease. -------------------ADDITIONAL INFORMATION------------------- CDC criteria require >=5 bands for IgG or >=2 bands for IgM for the Immunoblot to be considered positive. Bands (e.g.,p41) may be detected in patients without Lyme disease, and patterns not meeting the CDC criteria should be interpreted with caution. Immunoblot should be ordered only on specimens that are positive or equivocal by a FDA-licensed Lyme disease antibody screening test (e.g., EIA). Test Performed by: Mayo Clinic Laboratories - Rochester Superior Drive 3050 Superior Drive NW, Rochester, MN 55901

I was started on Doxycycline 100mg 2X/day. I'm on day thirteen of the fourteen day Rx.

I was referred to Infectious Disease. I saw the doctor there yesterday. He told me that my test was absolutely, no doubt in his mind, no further discussion needed, a false positive. He said I had no symptoms of Lyme (although the only symptom he could name was one swollen joint, he said people with Lyme have only one joint affected and it is always visibly swollen). He could not answer how the specific bands were positive just said I should have never been given the test because it is unreliable and the repeat test would not be ordered and I should stop thinking I have Lyme and immediately stop the Doxy. He also said that since I had seen a Rheumatologist previously that no one was going to be able to find out what was happening with me if she had not...

So anyway, obviously he sucked on many levels.

I guess my questions are: Are these Lyme symptoms? I mean it seems like they are from everything I've read but he is the second doctor to look me straight in the face and say that I do not have Lyme and none of my symptoms are consistent with Lyme. I've been told this so many times by people who seem to be contradicting themselves (many of my symptoms are actually listed on the Lyme handout I was given by his office on my way out) that these are not Lyme symptoms. I feel like I'm in a alternate reality in these office visits.
I updated my primary doctor and she suggested I see an allergist for the food issues I've been having and now a rheumatologist also but has anyone had any success with just continuing to see random specialists? I don't really want to repeat my previous pointless journey through a ton of expensive tests if these are all just Lyme symptoms.
Has anyone had a positive Lyme test and then found it was actually something else?

I am open to any thoughts or experience anyone would be willing to share. I feel (after starting the Doxycycline) that some of my cognitive issues are starting to clear. I spent years being barely able to read with any comprehension but didn't stop trying. I can read on unfamiliar topics without taking breaks and with some understanding now. I am concerned the Rx is not enough and I will go back to my completely clouded brain... I really don't know where to go from here.

Thanks for sticking with me I know it has been long. I have been looking at this forum for a while but have not joined and have been able to find a lot of useful information so thank all of you for that as well!


You had many tick bites, symptoms consistent with lyme and co's, and recently a positive lyme test.

If that doesn't indicate you have lyme disease...what the heck would? My goodness - those Dr.s are clueless.

As Missouri stated - you need more treatment than 2 weeks of doxy (at half dose only) - it will take many months...to years to fully treat your infection(s)

The good news...you now know for sure what you're dealing with and can start treating.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 230
   Posted 2/22/2018 3:30 PM (GMT -6)   
23 and 39 are Lyme specific bands. You need an ILADS or 'Lyme literate' doctor who can get you on a treatment protocol for these symptoms.

Spanish
Regular Member


Date Joined Sep 2017
Total Posts : 146
   Posted 2/22/2018 4:41 PM (GMT -6)   
Hi and welcome, Im sorry to say that I would guess its almost certainly lyme.

I too have been told by many doctors I dont have lyme but I do. The medical community really does fail patients with this disease.

The good side is you found this forum, there are many people here who want to help and recovery with treatment is completely possible.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2025
   Posted 2/22/2018 5:27 PM (GMT -6)   
Yes. Those are all common symptoms of Lyme. That doctor is an idiot. If willful ignorance was a crime, he should be imprisoned for stupidity.

So sorry for your suffering and welcome to the forum!

I'm not always so blunt. It just burns me when I hear the idiotic things that doctors have told people who are suffering obvious symptoms of chronic Lyme and multiple coinfections.

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2299
   Posted 2/22/2018 5:31 PM (GMT -6)   
Just wanted to stop by and say hello and welcome to our forum.

We encourage all new members to read our "New to Lyme" start here thread at the top of the page. It has tons of useful information on Lyme, Detoxing, testing, symptoms and more.


Take care and I wish you the best of healing, Jo
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