Topic: I've Had Lyme Bands Since 2001....And Never Knew
Hambone
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I'll try to make this short...
I went camping A LOT in late 2000. By 2001 I was feeling REALLY drained and fatigued, and eventually panicky.
I went to Mayo Clinic in May 2001 really sick. I remember telling the Dr. I felt like I was slowly dying, and I always had a low grade fever when they did my vitals.
Lots and lots of bloodwork. Lots of appointments. Always in and out in 15 minutes.
I remember him mumbling something at one appointment about a Lyme test being reactive, but then he QUICKLY dismissed it and shook his head "no" while mumbling about the tests being so unreliable and needing a bullseye rash. I believed him. He was a Mayo doctor, after all.
He told me all my labs were fine, I was just depressed, and he left and came back with bookoos of samples for Sarafem ( an SSRI ).
It did help some. I did slowly feel about 80% better. I got back to work, but I never really felt like my old self, and I always felt like the bottom was going to fall out again someday. I even upped my long term disabiliy insurance because of this nagging feeling.
Then in early 2005, the bottom fell out. I crashed an burned. Had to take a leave of absense and then resign. Was told over and over it was "just depression" and drugs were changed/added/ripped away. I was a mess. It was embarrassing to have people think I went coo coo.
15 doctors and nobody figured it out until I found my current doc who diagnosed Lyme and got me started with treatment last fall.
All this time I've had that old conversation in my head with the Mayo doc. I could still hear him mumbling about Lyme and shaking his head.
So I called Mayo a few weeks ago and requested my old labs from 2001. Surprisingly they said "No problem!". I was expecting a hassle or a big fat no.
I received my labs today from 2001.
The Mayo western blot was REACTIVE and bands 41 and 58 were reported. But I was never told.
I was drugged with an SSRI instead and sent on my merry way.
My question is....
Do you think this was Lyme way back then?
How in the world could an SSRI have helped so much if it was Lyme? It must've been reeeally masking some symptoms, or chased it into dormacy for a bit. But it only helped until early 2005 before I was sick again.
I have to say, I'm sitting here looking at this lab work from 2001 and I am . All that time they made me feel like I was just depressed and it was all me.
The report straight-up says REACTIVE. Not positive or negative. Then it has bands 41 and 58 listed as reactive. But it never made it into my hands until now....almost 10 years later.
[ 02-10-2011, 03:19 PM: Message edited by: Hambone ]
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Hambone
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I guess I should add, they don't report IND bands. At least they didn't in 2001. Lord only knows how many of those I may have had.
And band 58 is still showing up after all this time. It was one that was ++ reactive with IGenex.
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sutherngrl
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Its just a crazy theory, but I wonder if this is why SSRIs can actually help some of our symptoms.
......Lyme affects the brain, and maybe the damage it does to our brains makes us feel bad. Then we treat the brain with brain meds, SSRI's, etc; and maybe these meds heal a part of our brain and we feel better for a time.
Its just a theory!
Example.......I developed a mood disorder while treating lyme. Obviously lyme took its toll on my brain. I had terrible back and forth mood swings and it made me feel very ill and very exhausted. Taking a mood stabilizer has greatly improved my fatigue. I have been very amazed.
All along I thought all the fatigue was lyme related. I still fatigue easily, but I don't feel like I'm dying anymore.
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Hambone
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My aunt had Bells' Palsy about 30 years ago. She ended up having a lip and eye lift 10 years ago because she still kind of drooped. After the Bell's palsy, she started having bad migraines and bad back pain.
She was put on Zoloft about 12 years ago and now she's all hunky dory and has never felt better. But if she tries to stop the Zoloft, she gets a million symptoms she never had before, so she stays on it.
Now she's on statins, Boniva, Zoloft, and Lyrica.
But I'll bet she really has Lyme and all these things are masking symptoms. She's been a total witch to me since I've been sick ( she thinks I just want attention ), so I don't really push much ( at all ) for her to be tested. She wouldn't listen anyway.
I tolerated an SSRI just fine in 2001, but in 2005 I all of a sudden couldn't tolerate them anymore. Each time I try one now, it's like acid burning my brain. EVERY single doctor I told this to looked at me like I was nuttier than a squirrel and said they've never had anybody with this problem.
I wonder if this reaction is because of Lyme?
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steve1906
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Hi Hambone
It certainly sounds like you've had Lyme from the beginning. We hear these story's over and over again.
I'm glad you found a doc that is helping you, you needed that.
Now, you said you found a doc that diagnosed you with lyme, is he/she a LLMD?
It seems most of us can not forget about the past, so many years of mis-diagnosed. I for one am still very bitter at the system!!!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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sutherngrl
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Me too Steve....bitter at the system. Its hard to get over the abuse.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Sure you've had Lyme all this time. I have a similar story regarding the SSRI... (but I have never taken that form of anti-deps)
I managed to live almost my entire life while having Lyme. Once when I crashed I was put on an anti-depressant and was able to get myself out of the hole and go on ... for AWHILE.
Also consider that the test they used was NOT Igenex and did NOT test for all possible bands. You probably had more bands than that.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Hambone
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Steve...yes, my doc is an LLMD. Thank God! I didn't know he was when I went to him. I just went to him because he's Integrative and is an MD and an ND.
quote: Once when I crashed I was put on an anti-depressant and was able to get myself out of the hole and go on ... for AWHILE. [/QB]
Yep. This is what happened to me. This story of mine just keeps unfolding a little bit at a time. So maddening! I lost my freakin' career over this, not to mention friends, family, income, self worth......ahhhhhh!
Preaching to the choir. I know you all feel the same way.
Now I wonder if there is such a thing as antidepressant poop out. Do they truly poop out, or is it Lyme that can't be band-aided anymore?
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Hambone
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quote:Originally posted by Lymetoo: Also consider that the test they used was NOT Igenex and did NOT test for all possible bands. You probably had more bands than that.
I noticed on this Mayo Clinic western blot, it states that it's not FDA approved. Do you know how many people snarked at me for getting the IGenex test because it wasn't FDA approved?
!@#$%%&^%$#
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BoxerMom
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Hambone - Hang on to that test result. The Mayo clinic policy is "anything but Lyme." I think insurance payments and bonuses hinge on never diagnosing Lyme, even with positive test results.
Mayo has abused and led astray tens of thousands of Lyme patients, and may be required to answer for that someday (read: huge lawsuit).
Release the anger for now. It is not conducing to healing. But keep those results.
As for the SSRIs, many of us have maintained a certain level of functioning on these meds. It's the same with supplements.
When I was finally diagnosed, I was so pi$$ed at all the natural medicine doctors and SSRI dispensers who kept me "just functioning" with the implication that if I stuck with it, I would fully recover.
Nobody had the guts to say, "You are not getting well. Clearly I don't know how to diagnose you and you should look further."
BoxerMom
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Also, Hambone - what happened to your previous signature line, "God shut one door and opened an oven door." Wasn't that you? It was my favorite.
Thanks again for your note. I am going through the same thing right now. Told me that zoloft is no longer working and want me to move onto cymbalta. I love these people. She asked me if I felt the zoloft was working anymore? How do you answer that when you have been sick for 3 months and symptoms elevating in the last 2 weeks. It's getting hard to speak without sounding like an idiot. I just can't find the words. Hope this llmd turns this around for me on Monday. I'll keep you all posted. Thanks to all who post here. This may have saved my life.
Murph
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I only had testing done two weeks ago and am waiting for results, but was curious if you are seeing Dr. K in FL? I have had a similar experience with SSRIs that stopped working. I went to see Dr. K out of years of frustration with seeing so many different specialists, but was kind of weirded out when he said he thought it was lyme (although I've had plenty of bites, and definitely at least one with a rash). I didn't go to see him because I suspected lyme, just that I was tired of (and nearly ran out of) the local doctors.
Still waiting for results but curious if we're seeing the same doctor. I'd like to know what others think of him. I don't go back until the first week of March. I'm thinking maybe I don't have lyme after all since they have not called me about the results--must not be anything conclusive to merit letting me know right away.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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Hambone
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quote:Originally posted by JunkYardWily: that so infuriating hambone i want to drive to minnesota to punch one of them in the face.
Drive to Florida and punch them out. It was Mayo in Florida.
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Hambone
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quote:Originally posted by sbh93: I only had testing done two weeks ago and am waiting for results, but was curious if you are seeing Dr. K in FL?
Yes. I love him. He is wonderful. I'm very pleased and impressed with his compassion.
I didn't go to him for Lyme either. I went to him because he looks for the root cause of illness. And boy did he find it.
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posted
That is so encouraging. Thank you, Hambone! I'm so sorry you've gone undiagnosed and untreated for so long when you clearly had evidence of the disease right away. I'm glad to hear you are getting the help you need now, and feel blessed to have found a doctor others have confidence in. Many positive, healing thoughts heading your way...
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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Hambone
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quote:Originally posted by BoxerMom: Also, Hambone - what happened to your previous signature line, "God shut one door and opened an oven door." Wasn't that you? It was my favorite.
That was me. And I'm still in the oven .
When I wrote that, I was thinking of that story of the glob of clay that was thrown in the oven to be made into a teacup. Have you heard that story? Just google the teacup story.
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posted
Here is a possible explanation for the action of antidepressants on people with infectious diseases:
Bacterial Infection & Serotonin
6.2 Bacterial Infection
The patient had developed a bacterial infection in the brain/nervous system. The bacteria were destroying the serotonin.
A Neurological Profile Test was carried out on the patient's urine using High Performance Liquid Chromatography (HPLC) for the reasons given above. The test was carried out by Neurotech International Limited.
The HPLC output for a typically depressed patient shows low levels of serotonin precursor, low levels of serotonin and low levels of serotonin non-toxic derivatives. In this case the HPLC test showed the neurological profile to be not just abnormal but pathological. Bacteria were present in the nervous system.
It showed the serotonin precursor was nearly normal but the serotonin level itself was close to zero and the non-toxic derivatives were very high. Therefore the serotonin was being produced but rapidly destroyed. High levels of neurotoxins were also identified along with an inflammation marker. This suggested that there was bacteriological infection destroying the serotonin.
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Hambone
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Thanks Lou. That's interesting.
I wonder if increasing inflammation is what made it impossible for me to tolerate antidepressants anymore. As my bacteria load got higher, so did the inflammation???
The higher my SED rates got, the more medication sensitive I became and I couldn't handle them anymore.
Does anybody think it's possible that if I can get the bacteria load down, the inflammation will go down, and I may be able to tolerate an antidepressant again someday?
I'm pretty bummed. I went to get a blood draw today ( fasting ) and came VERY VERY close to passing out. It was soooooo embarrassing and I've been so down in the dumps ever since because EVERYTHING has to be so difficult.
All day I've been wishing I could take something again, because if I wasn't depressed before when I started one back in 2001, I'm depressed as ever now. Nothing I do is easy and is such a friggin' struggle.
But I can't tolerate them anymore
Just wondering if it's because of inflammation from this blasted Lyme infection.
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See, this just makes me so mad! When the supposed "best doctors in the world" ignore the evidence. To be fair, they are uneducated. But whatever.
My sister-in-law works for Mayo Clinic and my brother is in college to become an RN and wants to go work there as well. (note)
So when I am going through all this Lyme stuff and tell them that even Mayo Clinic doesn't have their act together, they just got furious. "You mean to tell me that some of the best docs in the states would miss something....bla bla bla!!!"
They didn't believe me that I hear of these kind of stories all the time. I'm sure I don't actually need to say this, but they are very prejudice. And it disgusts me.
If you go to their site and look up Lyme, it is the same ball of bull wax! They don't know! Or choose to not know.
I'm so sorry about your experience!
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jackie51
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Sorry about your mayo results but at least you know now.
I also had success with SSRI's for a while. Prozac gave the worst headaches so it was Zoloft and/or Wellbutrin for a while. Then, once I learned it was lyme & co. and I did some research on SSRI's, I went off of them. I have them if I feel I need them, like when my dad was dying of cancer. I couldn't handle the extra load on my system so the SSRI's can help, at least for short periods.
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Hambone
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I am just SICK to my stomach because I know a guy who has had POTS for several years now and has gotten zero help. I keep trying and trying to get him to consider Lyme as a cause but he WILL NOT LISTEN because he was told he has POTS and that's what he's sticking with.
Now he has an appointment at Mayo in Rochester that he waited 4 months to get, to see a doctor who specializes in POTS. We all know Mayo is going to completely ignore any Lyme testing.
This poor guy is bedbound and is making a HUGE effort and sacrifice to travel to another state to a doctor who most likely will do nothing for him. But he just won't listen. He is so excited because he thinks Mayo is like getting to see the Wizard of Oz and he'll get his wish.
I am sad for him because he has no idea that what could be the root of his POTS will not be addressed. At all.
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Hambone
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Woke up today feeling like death warmed over.
Turn the tv on to Dr. Oz Show.
Imagine my disgust to see a guest on his show....a doctor from the Mayo Clinic lecturing people on preventative medicine.
These dolts missed my diagnosis 10 years ago and it's because of them I have now gotten so bad.
Hey doc, how about having one of your preventative medicine tips be to screen and properly diagnose Lyme Disease when a patient presents with classic symptoms, and not blow them off and send them away with an SSRI and pat on the head.
momlyme
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So sorry!
It is so unfortunate that so many think these big name places are so wonderful...
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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quote:Originally posted by Hambone: Woke up today feeling like death warmed over.
Turn the tv on to Dr. Oz Show.
Imagine my disgust to see a guest on his show....a doctor from the Mayo Clinic lecturing people on preventative medicine.
These dolts missed my diagnosis 10 years ago and it's because of them I have now gotten so bad.
Hey doc, how about having one of your preventative medicine tips be to screen and properly diagnose Lyme Disease when a patient presents with classic symptoms, and not blow them off and send them away with an SSRI and pat on the head.
- Brother!!
Have you considered trying a tricyclic antidepressant? They are very different from SSRI's.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Yup... when I was about 11 I had an antibiotic resistant sinus infection so bad with a stiff neck and migraine. In hindsight, it was probably shortly after I was bit the first time.
Three doctors were consulting with my mom about possible leukemia or spinal meningitis. You would think, being in southern New England, that ONE of them would think to test for lyme.
My lymie cousin warned me that there would be a lot of grief to work through, thinking of all the missed opportunities to treat and all the ineffective treatments I did get for different things.
I am praying for strength for you, me, and all of us who have these many, many lost years to sort through in our heads.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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Hambone
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I'm sorry seem so...****y. I'm the first to admit I need an attitude adjustment today.
sbh93, you're right. I do haved a lot of grief to work through....missed opportunities to treat...knowing that there was something wrong physically but being made to feel, all these years, like I must be doing something wrong and it was just me and I must just be weak and flawed.
I am trying to remind myself that these doctors didn't do this maliciously ( even though the test right in his hands said REACTIVE and he made a choice to discount it...and he's probably out playing golf right now ).
I just want to feel better. I want to feel better so badly so I can be of service and help others who are going through hard times. I want to do Meals on Wheels. I want to visit shut-ins and make them feel loved. I want to mow the old couple's grass when they can't do it anymore. I want to make an income again so I can get a new car and give the one I have now to the mom ( with 3 kids ) who makes $8.00 an hour, is on food stamps, and drives a 1995 clunker that is on it's last leg.
Soooo many things I want to do and can't because this stupid illness won't let me.
One thing Lyme has given me is a heart that bleeds for hurting people. I wouldn't trade that part for anything.
Lyme has been a huge curse and blessing at the same time. I just wish it didn't hurt so bad.
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