posted
I haven't been here in quite some time. I was trying to live my life and follow my treatment plan without feeling "obsessed". Now, I am lost again.
I have been treating for Lyme and Bart since June 2009. Most recently, I was taking Plaquenil, Zithromax, Rifampin and Minocycline.
I have been feeling pretty terrible so my llmd said maybe we should stop the Rifampin and run some labs. MDL labs show a complete change from 3 years ago.
I have no chronic infection showing (which is good) and it looks like I have a NEW active case of lyme, 5 bands with the addition of anaplasmosis (which I didn't have before according to the MDL labs from 2009).
How does I get a new case of Lyme while treating my chronic case? Is it possible the Ehrlichia was present before but did not test positive?
LLMD starting me on Doxy (400mg/day) for a few months. Will add in others later.
My symptoms include: muscle pain and burning, intense headaches and neck pain, fatigue, joint pain, back pain and jaw pain.
How do I determine what is what?
Should I expect an intense herx when starting the Doxy???
I feel defeated today. Sad. Angry. So many things. I already have it in my head that I will get up tomorrow with my head up and a positive attitude...but tonight, I am a mess.
I am so careful with my children and myself when outdoors. We are diligent with our tick checks. We have a dog but I check him all the time too. What did I do wrong?
I appreciate any input anyone may have OR personal experience!
Thank you and it feels good to be back.
Posts: 114 | From Atlanta, GA | Registered: May 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
"My symptoms include: muscle pain and burning, intense headaches and neck pain, fatigue, joint pain, back pain and jaw pain."
Have you treated Babesia? Many of your symptoms sound like Babesia to me.
Have you been tested for FL1953? I don't know very much about this myself, but I remember reading to check into it if you can't get better and if you have a lot of pain.
Keep the faith, don't allow yourself discouragement (for too long). You will get thru this.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Hubby has been sick for 11 years and in treatment for about 8 of those years. During the last year he tested posiitive for HGA (human granulocytic anaplasma), RMSF (Rocky Mountain Spotted Fever), ehrlichia chafeensis and typhus. These were all positive antibody tests at low levels. All were IgG which supposedly indicates past infection.
I do not believe he has all 4 infections -- his LLMD actually thinks he may really have RMSF and the others are cross reactions. Never had positive tests for any of these things in the first 10 years of illness.
But IV flagyl brought on fevers which were a new symptom. Oral doxy did stop the fevers initially after switching to that from minocycline but recently he increased the flagyl dose and fevers have been trying to come back.
So my answer would be that it is entirely possible that the ehrlichia was hiding out in you the entire time.
As to the lyme -- I wish hubby would start producing antibodies to that. One person who I respect told us a long time ago that they thought you could never get into remission until you started producing antibodies -- which would mean your immune system recognized the infection.
I wouldn't worry about the difference in IgG and IgM -- in lyme that is not very meaningful.
Just be glad that now you have identified another infection which needs treatment and which may have been hindering your forward progress.
Bea Seibert
P.S. Hubby had very little herxing from the doxy. I started him at 100 mg daily and increased it by 100 mg per day every 3 days or so. He just felt better once the daily fevers of 6 months duration stopped.
Unfortunately Clongen lab saw what was probably ehrlichia on a recent bloodslide so the doxy alone has not cleared the infection. Hubby can't add in rifampin right now because it lowers the blood levels of his babesia meds (lariam and malarone).
Will be talking to the doc in a couple of weeks to figure out a new med combo for the ehrlichia or whatever is attacking his white blood cells.
Hubby also has had issues with low WBC since the fevers started and that had never been much of an issue before either -- at least not to this extent.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Do not despair! You are following a typical course in Lyme treatment. Infections that were "lurking" make themselves evident as other pathogen loads comes down.
I also tested negative for Erlichia. After treating for Lyme (negative), Babesia, Bart, parasites (also negative), viruses and yeast, guess what has shown up??!!!
I thought I was having a Babesia relapse, and I know I need to continue Babesia treatment, but I think my dominant infection is Erlichia right now. (I did not retest. My exposure was in OK, where Erlichia is rampant. I also think I have all the co-infections, regardless of testing. So far, I seem to be batting 1,000 in that regard. May as well overachieve in SOME area of life.)
I'm having similar symptoms to yours - fever/chills, headache, neck and back pain, joint pain, jaw pain, fatigue, lack of appetite, major flushing and sweating.
The cycling chills/fever, sweating and hip pain made me think Babesia, and the frontal headache made me think Bart. But some completely new symptoms are wet eyes in the a.m., dry eyes in the p.m. (this illness is too weird), low grade fevers with flushing, intense sweating (more than with Babesia), and nausea (never had that with Babesia).
I am not experiencing the air hunger that I associate with Babesia, nor the capillary rashes that I associate with Bart. I am getting the sole pain and fibula pain (bone pain).
I am having pain in the jaws and teeth, which I've had with all infections, but wasn't really intense until last year, when I think my Erlichia started to show up. My headaches are much more intense now, too.
My combo is Doxy, Rifampin, Zith, Diflucan.
I had a HUGE herx 2 nights ago, with chills and fever alternating every half hour or so, flushing with intense sweating, anxiety, fatigue, general malaise, pressure-type headache, jaw/teeth pain, sole pain, leg pain, dry eyes.
The next morning, I felt amazing. Better than in quite some time. My nausea is gone, as are the morning wet eyes. No fever, flushing or sweating in the last couple days. Big improvement in energy. No brain fog. No anxiety. Decreasing joint pain.
I like my current combo. This is my first time on Doxy (I was always on Mino). I know I need to continue treating Bart (sore soles and other typical symptoms) and Babesia (my main problem infection), and Lyme, of course.
Since Doxy, Rifampin and Diflucan all have some antimalarial properties, I think I can at least keep the Babs at bay. I know the Bart and Lyme are covered.
I think you'll need more than Doxy. I started with Doxy, Rifampin, Diflucan, and wasn't making progress. Two days after adding Zith, I got my big herx.
You should also do a test run of Zith/Mepron or Zith/Malarone, to see if you herx for Babesia. The three Bs travel together. Most of us have them all, regardless of test results.
You're doing great. You're making antibodies (Yay!) and uncovering more infections that need treatment. That's the name of the game here on Lymenet.
posted
Thank you so much for all the reassurance and positive words! It means a lot to me.
I have not been tested for Babesia. My LLMD did mention testing for other TBD in the near future.
It sounds like you all are managing your journeys well and I am so happy to hear that.
I know that it is a slow process and I am ready to start over and get back on track to feeling better.
Boxermom, I guess the antibodies are a good thing and hopefully that means I will be able to kill some of the bacteria and get rid of some of these new symptoms!
Thank you again!!!!
Posts: 114 | From Atlanta, GA | Registered: May 2009
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