nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
When I went to the infectious disease doctor last fall, he told me I was positive for borellia HERMSAE, which is tick relapsing fever. Like a typical ID doctor, he said I never had borellia burdorferi or any of the other infections, which he made sure were negative. I was positive on the ELISA for Bh but the western blot was negative. He said Bh was my primary infection and the drugs I took for Bb took care of it.
I asked him if Bh can cause an EM rash and he said no. I must have been mistaken that I had 3 EM rashes after being bitten by the wood tick. I went home and read Bh isn't even carried by the same tick as Bh, but you know how stupid those doctors are and they will discard everything you tell them to make their diagnosis fit.
The tick that causes TRLF is a soft bodied tick, not the same one that causes Lyme Disease and co infections. It is very common in Colorado and other mountainous areas like where I live. It can go for ten years without feeding! It only attaches for 15 minutes and then drops off so most people never know they are bitten.
I trail ride in the mountains all the time. I got very sick after treating babesia, in the fall of 2011 I wasn't on any abx. I continued to get sick all winter. I was relapsing and thought it was a virus hitting me over and over. I had headaches, joint and muscle pain, fevers, chills, sweating, insomnia, weakness, stomach pain, nausea etc.
After about 6 months, it got better on it's own. I agreed with the ID doctor that this was not my problem any more because I was not having recurrent fevers at that time. Even though I didn't take any drug that would affect it, it probably resolved on it's own. My new infections was bartonella. Of course the doctor did not agree I had bartonella so I had to waste 6 months finding a doctor that did. I was finally diagnosed by Dr. M in Seattle. Something happened when I treated bart. My symptoms shifted. At my last Skype call, I was so sick I could hardly stand up. She thought I had something in addition to the bart - maybe babesia.
Then it hit me. I have been relapsing every 5-6 days. It hits me suddenly and I can hardly stand up when I have it. Then it goes away. I never treated the TRLF and it is back!!!! Of course it is back. Good grief, I never took anything to affect it. It goes in and out of being dormant. It is a spirochete and nothing I have taken affects it.
Dr. M readily volunteered to change my meds (so happy about that). I think she is going to work for me as a doctor. Anyway she gave me doxycycline and Rifampin, and doxy is one of the drugs effective against Bh.
There are so many infections! I have been infected three times, not just once. You have to be careful to examine what you have carefully to determine what is causing what. These disease are like fighting terrorists. You just don't know who the enemy is. It is always changing.
Look up the symptoms of relapsing fever. Maybe you have it IN ADDITION to whatever else you are fighting.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
You know the lyme tick also carries B. miyamotoi, which is in the relapsing fever group? Don't know if the relapsing fever test will pick this up; the lyme test will not, it is said. Miyamotoi has been found in the NE and in CA, so it is probably in between too.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks poppy. Maybe that is what it is. Who knows.
I got a box from the LLNP today. Inside was $1600 worth of supplements she never mentioned sending to me! Now I have to go to the post office to send it all back. I am freaked. How could anyone do that? She told me she was sending me some A-Bart and one other Byron White thing - maybe Burbur. That is $2000 for one phone consolation which I am supposed to have every month.
Will it ever end?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by nefferdun: Thanks poppy. Maybe that is what it is. Who knows.
I got a box from the LLNP today. Inside was $1600 worth of supplements she never mentioned sending to me! Now I have to go to the post office to send it all back. I am freaked. How could anyone do that? She told me she was sending me some A-Bart and one other Byron White thing - maybe Burbur. That is $2000 for one phone consolation which I am supposed to have every month.
Will it ever end?
Call her first to clarify, why don't you? I compleltely understand why you'd be freaked out!!
And, no, it appears that it doesn't ever end! I thought it would, but . . . I"m still waiting for the pot of gold at the end of the rainbow. Well, not really, but an end to this sure would be nice.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
$2000 is INSANE! Good lord. I hope this gets worked out. That's more than one of the highfalutin, fancy doctors in New York. I have a friend who sees one who's always complaining about cost.
Yes, co-infections (some of the less popular ones) are definitely something to consider. I have relapsing fever, and rocky mountain spotted fever in addition to Lyme.
Strangely, I have yet to have a fever, but I break out in cold sweats.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Those softbodied ticks are awful!
I remember them as a kid.
Always thought they were dirt or whatever, because they would be gone after a bit.
Really...ticks help the ecosystem how? If there is one pestilence aside from bed bugs that could afford to go extinct... Ticks are it. Grrr.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree!
I sent the box back and insured it - cost me $30. If I had not opened it or had opened the bottom, I could have just refused it. I called the credit card company to make sure it is refunded. I also sent 3 things back she put in my bag last visit and hopefully she refunds them too.
I am having a mild fever right now. I also get headaches, stomach pains, nausea and weakness.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Printer-friendly view of this topic