nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I went back to the infectious disease doctor today and was shocked to find out I tested positive for antibodies against borrelia hermsii, tick relapsing fever. I know nothing about it.
I hope I got rid of it when I was treating Bb but I don't know for sure. Does anyone else have it?
I wanted to be tested for bartonella hensalae and he forgot to order it so I am still waiting on that test result. In the meantime I am going to bite the bullet and make an appointment to fly to see Dr. F. It has been very frustrating trying to get answers.
I am doing much better though just with HH2 capsules.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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GretaM
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Holy s*** Neff! Tick relapsing fever?! Wow! No wonder you've been not feeling too great lately!
Wow! I'm floored.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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nefferdun
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Maybe I don't still have it. He said you always have the antibodies even when the infections is gone. He said the doxy I took should have cured it. Of course he is an ID doctor, not an LLMD.
I was just shocked to have ANOTHER infection that I never even suspected. I was positive on the ELISA for Bb but didn't make it on the western blot. He said this means I never had Bb.
I asked him if you get a EM rash with Bh and he said no. I told him I had the rash and I tested CDC positive for Bb in 2011. He had nothing to say. Although he is a nice person, it is just too much to wrap his mind around.
So I know nothing about this infection except it is prevalent in the western states. He said it causes fevers that come and go and the only time it shows up in the blood is when you are having a fever. He said it can give you uveitis. There I am with my eyes so blood shot I look like I have been on a binge - but of course, nothing is causing it.
So I have tested positive for Bb, Ehrlichia, Babs duncani and now borellia hersii. I also treated Bart once before and think I have a different strain now. One tick bite!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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GretaM
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posted
Neff! Haha-you're right. Too much to wrap his head around. Imagine, a disease as rare as borrelia...and you are positive to two kinds, Bb and Bh. Poor guy, he must be floored. Perhaps, just perhaps, everything the CDC taught him of borrelia is wrong...
Judie
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posted
I have borellia hermsii (relapsing fever) along with Lyme and Rocky Mountain Spotted Fever (w/several other infections).
Yes, it does make you feel awful and it's chronic, but I think Lyme has been worse for me.
When I saw my first Lyme doctor, something I said made him run that test too.
Posts: 2839 | From California | Registered: Jul 2012
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nefferdun
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Thanks Greta! It just blows me away that I have ANOTHER infection I never suspected. I would agree with the ID doctor that my diagnosis of Bb was probably due to this EXCEPT that he admitted Bh does not cause an EM rash. I had three of them, not just one, and it was very distinctive - unforgettable. So I must have been infected with both. My IGENEX test was CDC positive.
Judie, what were the symptoms that made our doctor decide to test for this infection as well?
In 2011 I had a fever for two months. I thought I was having a thyroid flair. After that my temperature remained higher than my normal and I thought it was because I was taking LDN and it had helped regulate my thyroid so my body was more normal. I told this doctor I had this happen and I have not had abx since 2010.
My eyes were always a mystery - why are they so bloodshot and sensitive to light? Maybe I still have this infection.
Last night I went out to celebrate New Years, for the first time I can remember. I tried to dance and every time I had to stop to catch my breath and rest after just a short time. My heart was pounding so bad I thought it would burst. Obviously I am still sick - but after to many years of this, it can feel normal.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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GretaM
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Neff-right! I forgot about your EM rashes! Yikes!
This ID doc, did he test you for Bb as well this time around? Is that your ELISA positive?
Is it possible that you have Bb again as well?
I don't want to overwhelm you with these questions.
There isn't a lot of LL data regarding people who've had more than one strain of borrelia.
You and Judie are the only folks I've known that have caught two (or more) Borrelia species.
I looked at the soft bellied ticks (didn't know there were such things...) and aren't they ugly, like gray raisins when they aren't engorged?
Pretty sad that something resembling a raisin can cause so much sickness.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Judie
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"Judie, what were the symptoms that made our doctor decide to test for this infection as well?"
I don't know. He kept asking questions about mice and squirrels around my house.
I was obviously recently infected with Lyme when I saw the doc back in 2012 (I had the EM rash), however when my blood work came back I had IgG for Borrelia Hermsii which makes me suspect I had been infected well before the bulls-eye.
I don't recall ANY bites from anything.
I've had immune system problems for years. All hell broke loose after the EM rash and the reinfection this year. This is my indicator that Lyme must have made everything worse.
There were non-tick born infections that I had too in the blood work and my immune system was severely compromised by being poisoned 15 years ago.
Lots of layers to sort out.
I posted this thread a couple weeks ago about tests that I had the doctor run:
CD57
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Member # 11749
posted
Oh my goodness! were you bitten in MT, Neff? This is very interesting.
I don't blame your wanting to go see Dr F. Maybe he will have some new answers. I saw him once and he told me, get that PICC line out of your arm, you don't have Lyme or bartonella anymore!
Posts: 3528 | From US | Registered: Apr 2007
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nefferdun
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Greta, that is funny about something resembling a raison - I just can't stand the looks of ticks. They are so gross. The ELISA test for Bb was positive but the western blot was negative. However I was CDC positive for Bb in 2011 on the IGENEX test. The ID doctor said he doesn't use or recognize IGENEX.
Judie, 13 infections! That is mind boggling. I am having a hard time getting my mind wrapped around the five positive tests I had plus the Bart I treated and may have again. If you can get Bh from something other than ticks, maybe I got re-infected. There are no deer ticks hers - just the big wood ticks and those are only in the woods.
CD57, If Dr. F didn't recognize your having any other infections maybe he is not the person to see. I know I have PR. That is not my concern. What ELSE do I have? That is what I want to know.
I looked up tickets and it is cheaper to fly one way by Allegiant Air and then get a one way ticket back by Delta. It is really strange that Delta round trip is four times as much as a one way. Allegiant only flies two days a week but it is very cheap. There are some cheap hotels too. Dr. F himself is about half the cost of a regular LLMD.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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CD57
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And he takes insurance, or at least he did when I saw him.
Posts: 3528 | From US | Registered: Apr 2007
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nefferdun
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posted
That is good to know. I have medicare which so far has not covered anything.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Judie
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Member # 38323
posted
Neff - I'm so glad you were able to get out on New Year's and dance! It must have been so nice to enjoy some of life.
"Judie, 13 infections! That is mind boggling."
Yep, I wonder how I'm walking around sometimes. Oh, that's right, I have trouble walking(attempt at humor here).
After I got over the initial shock, I just figured, "Hey, now I have proof for all those people who thought I was faking. NA na NaNA na!"
Shockingly, medicare paid for all my blood tests except H. pylori. I believe I read that Dr. F can run his tests through medicare if it's the same Dr. F that I'm thinking of.
Posts: 2839 | From California | Registered: Jul 2012
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nefferdun
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I called an made an appointment and they said he does not accept medicare but they will send the tests to medicare and sometimes they pay for them.
I realized - and am stunned - that the relapsing fever did not come from my tick bite in 2006. I must have gotten it in 2012. I remember being very sick and having a recurring fever at that time. The tick that causes RF is a soft bodies tick that only feeds for 15 minutes and then falls off.
I am just blown away by this. I was thinking I had gotten bartonella from the cat and had no idea about this infections. The bartonella test came back negative from ELISA so I will get it again.
Now I realize I probably got protomyxzoa way before I was transmitted borellia etc. I thought it was just menopause but it lasted ten years. I had pain in my legs, insomnia, migraines, fatigue and memory loss.
I have asked my son to get tested as PR can cause type one diabetes. If I could get infected 2-4 times in a state with no deer ticks, he could certainly have picked up something too.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lyme in Putnam
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After all you've gone through with this stuff. Is there a break?youre so knowledgeable of it all you know your body well to tell the difference of infections. Feel better.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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nefferdun
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Thanks lyme in P. When I had the realization I had multiple infections, it was 2:30 in the morning. I could not sleep the rest of the night. I was just so shocked.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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CD57
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Member # 11749
posted
I was just reading some old posts of yours, Neff, from like 2009 where you were treating bartonella and despairing because it seemed to return on HH capsules and you had done some other stuff for it too.
Is your thought now that all those symptoms were actually PR and now this RMSF? so interesting that they can cause the same symptoms. Also I was just reading that afipia felis can cause same exact symptoms as bartonella, as can brucella. Have you been tested for either of those?
Posts: 3528 | From US | Registered: Apr 2007
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