posted
I'm not one of the pro's here, but my husband tested positive for ehrlichiosis even after 8 weeks of IV Doxy + Bactrim. He took that 2 1/2 years ago, but our problem is that after he starts taking abx he gets pancreatitis so we haven't knocked anything down yet. We are spinning in circles.
I am trying to go to the lyme evaluation at Columbia University and here is a link I was just reading on erchlichiosis. I believe he has the adult respiratory distress symptom as well as coagulopathy (that based on antibodies in his bloodwork).
I thought that would have been easy to knock out also. One of the great docs weve seen said no way he still has it after that course of doxy and didn't test, then another one tested again and it was positive.
posted
I can't remember which tests were positive for us.. When I get home I need to open up my 24" tabbed binder and check that out again now that I'm back on the lyme path again...
Posts: 159 | From Toms River, NJ | Registered: Nov 2008
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Don't know what the dose of doxy is, but pretty sure that it should be taken every day or it may not work on the ehrlichia. I have heard of others who have it as a chronic infection.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
My 10 yr old daughter tested pos. for Ehrlichosis (actually.. she tested pos. and the lab didn't send the positive result for a FULL YEAR!)
She had been treated with Zith. for Lyme disease when we finally got the lab report and our LLMD didn't seem too concerned since she had been treated with Zith...which is what he would have used for Ehrlichosis anyways.
Not sure how hard it is to get rid of. My Aunt got it from a tick in Arkansas and she was pretty darn sick for months. Hers was caught early though.
No idea how my 10 yr old got it... maybe from fleas? Because she has no known tick bite and none of the rest of us tested pos. for it.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
I have had a hard time with Ehrlichia despite the fact that it is supposedly easy to get rid of. I have had doxy as part of my treatment for probably a year now and I just tested positive again for Ehrlichia.
I tried Rifampin before as well but couldn't tolerate it. So not sure where that leaves me with Ehrlichia treatment since Doxy and Rifampin are the usual treatments for it.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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beths
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Member # 18864
posted
Just checked my notes-2 months after bite I was on 200 mg doxy for 2 weeks then 300-400 for another 4 weeks, then 100 mg doxy daily WITH 600 mg rifampin for 3 months-I think that would have knocked it out.
IckyTicky -your LLMD said zith also is used for it? Hadn't seen that, but maybe that's what they use in kids.
The alternative practioner used one of those machines-not sure what it's called, you hold 2 rods while he checks nosodes???
Also told me I had signs of hepatitis-although my liver enzymes were fine, and my eyes aren't yellow! (I did have the hep vaccine many years ago for work)
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
I have long time ehrlichiosis, together with chlamydia and Borrelia. In that order. They have messed me up completely. I'm being evaluated neurologically, points to Bulbar MND. I was bitten a stunning 7� years ago but the real problems did not start until 2007 when I was stressed. Ehrlichia lies dormant. Chlamydia kills your breathing and makes you hypoxic. Lyme is number three in my book.
-------------------- My blog about my condition - http://borreliawenttofar.wordpress.com - Diagnosed with cellular activity for Borrelia, Ehrlichia, Chlamydia Pneu. Also have the herpes simplex virus. Posts: 52 | From Sweden | Registered: Feb 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here is what Burrascano says about chronic ehrlichia and its symptoms:
"GENERAL INFORMATION While it is true that this illness can have a fulminant presentation, and may even become fatal if not treated, milder forms do exist, as does chronic low-grade infection, especially when other tick-borne organisms are present. The potential transmission of Ehrlichia during tick bites is the main reason why doxycycline is now the first choice in treating tick bites and early Lyme, before serologies can become positive. When present alone or co-infecting with B. burgdorferi, persistent leukopenia is an important clue.
Thrombocytopenia and elevated liver enzymes, common in acute infection, are less often seen in those who are chronically infected, but likewise should not be ignored. Headaches, myalgias, and ongoing fatigue suggest this illness, but are extremely difficult to separate from symptoms caused by Bb." (page 25)
Here is what Burrascano says about treating ehrlichia:
"TREATMENT Standard treatment consists of Doxycycline, 200 mg daily for two to four weeks. Higher doses, parenteral therapy, and longer treatment durations may be needed based on the duration and severity of illness, and whether immune defects or extreme age is present. However, there are reports of treatment failure even when higher doses and long duration treatment with doxycycline is given. In such cases, consideration may be given for adding rifampin, 600 mg daily, to the regimen." (page 25)
So, maybe you need to take much more doxy with the rifampin. Notice, Burrascano says to add rifampin "to the regimen." Since the regimen is much more than 100 mg doxy daily, I am thinking that increasing the doxy while taking the 600 mg rifampin may do the trick.
Burrascano also says that it may take IV ("parenteral therapy) to get rid of it.
You certainly have a difficult case there--if you actually have it. Maybe when you clear the other tick-borne diseases, it will just go away. I base this on the following section in the Burrascano quote:
"milder forms do exist, as does chronic low-grade infection, especially when other tick-borne organisms are present."
How did the alternative practitioner determine you had it? I'd want some real proof before I went after it any further--proof like "persistent leukopenia" (an important clue, per Dr B.)
Also "Thrombocytopenia and elevated liver enzymes."
Posts: 9931 | From Maryland | Registered: Dec 2007
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beths
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Member # 18864
posted
When I first got bit-I was on doxy 100 mg bid for 2 weeks then 2-300 for 4 weeks. I also took 300 mg rifampin PLUS 100 mg doxy for 3 months. Tha was about 5 months after bite...one would think it would have knocked it out.
My blood work was fine...I will mention it to my LLMD-see what he thinks next visit.
I know alot of people believe in electrodermal testing...I don't know.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
I wouldn't rule it out. Like I said I have had a problem with chronic Ehrlichia despite treating it for over a year now.
At times I have tested negative only for it to turn around and show right back up again. The test I had done last month again came back IGM positive.
And by the way...I don't have leukopenia, thrombocytopenia or elevated liver enzymes so the absence of those doesn't mean that you don't have it.
I would talk to your LLMD about this.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
What are the symptoms? My original IGENEX test was negative, but I will mention it to my LLMD. My lyme test was also negative, LOL
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
We have just been using Quest since we test frequently. Quest does seem to detect it for me.
However every once is a while my LLMD tries to use a better lab to check out the status of infections. I can't afford Igenex right now so last month we used MDL since it is covered by insurance.
MDL was the IGM positive that I just got for Ehrlichia last month but as I said it also shows up through Quest for me.
I don't know which symptoms are being caused by the Ehrlichia. With having multiple infections it is hard to tell which infections are causing which symptoms. Seems a lot of symptoms overlap with several infections.
Here are the symptoms that the CDC lists for it...as you can see they are also symptoms that could be caused by other tick borne infections.
* Fever * Headache * Chills * Malaise * Muscle pain * Nausea / Vomiting / Diarrhea * Confusion * Conjunctival injection (red eyes) * Rash (in up to 60% of children, less than 30% of adults)
OH and I don't know if these symptoms that the CDC lists are mainly for acute infection or not. Chronic infection may present differently but I have no clue. Fatigue is also supposed to be a symptom.
When I first got sick I had the first 6 symptoms they list there but now not so much. Malaise, fatigue and mild muscle pain are still daily issues (and those could also be caused by lyme etc) but the rest are either infrequent or aren't an issue at all any more.
So really it is hard to say what my Ehrlichia symptoms are since at this point the symptoms I have could be caused by a number of different things.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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nefferdun
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posted
I have chronic ehrlichia too. I believe my dry irritated eyes are connected to that infection. I have also had cnofusion and severe muscle pain and cramps.
The LLMD told me my shin pain, lumps along the shin bone and headaches could have been caused from ehrlichia rather than bartonella (diagnosed by another LLMD but did not test postive).
In dogs, after the cute phase ehrlichia will go dormant in the spleen for several months (or years). When it emerges again, it is very hard to treat and sometimes requires lifetime antibiotics.
The LLMD said I can be reinfected from my animals, specifically horses. He says horse flies can pass it to me. I disagree that I am being reinfected. I believe I just have not gotten over it.
I find it strange that the vet world admits one of these infections can be chronic and need long term, even life long abx but the same strain in humans is easily cured!
I had two months of doxy - 400mg a day. And three months of Rifampin 600 mg a day. I have had zithro with one drug or another for over a year.
-------------------- 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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posted
Ehrlichia is a real pain it seems. I took the Elispot test in Germany and it showed a real high activity. It lies dormant for a long time then it attacks and causes real neuro damage. Ticks oh god I hate them. Why can't they just find a cure that eliminates the spirochetes and the other infections that invades our bodys.
-------------------- My blog about my condition - http://borreliawenttofar.wordpress.com - Diagnosed with cellular activity for Borrelia, Ehrlichia, Chlamydia Pneu. Also have the herpes simplex virus. Posts: 52 | From Sweden | Registered: Feb 2011
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beths
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posted
I have never tested for it again..my initial titer was negative.... Maybe I will ask for a titer from Quest of MDl just to be safe
But I think the 3 months on rif & doxy which were 5 months after the bite would have knocked it out.
Posts: 1276 | From maryland | Registered: Jan 2009
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beths
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posted
I have never tested for it again..my initial titer was negative.... Maybe I will ask for a titer from Quest of MDl just to be safe.
Looked at my bloodwork after bite-it was fine-never had any persistent leukopenia
Just freaked me out when the homeopath said that-plus the hepatitis thing..despite low liver enzymes
But I think the 3 months on rif & doxy which were 5 months after the bite would have knocked it out.
Posts: 1276 | From maryland | Registered: Jan 2009
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jackie51
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posted
Ehrlichiosis was the first thing I ever tested positive for. Lyme didn't show positive until 3 years after I was sick. Because ehrlichia was present, my primary concluded that I had been bit by a tick and treated the babs too.
My LLMD had me on a 2/2x a day doxy to hopefully kick it out. I still have the lump on shin, painful shins (sometimes) and one ankle is swollen. The headaches I got from ehrlichia have managed to go away, though every now and then I feel some pain in my right temple.
I don't feel I have fully gotten rid of the Ehrlichia, but will deal with Babs and Bart first.
For you, it sounds like it might be more on the front side since you have the awful nausea.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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beths
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posted
Do most people usually test positive for it? (I was negative for it initially FROM iGENEX-never has been retested)
Ithink my nausea is from babs.
I was in remission last year-relpased a few months ago from ? lyme and babs.
I don't get headaches. I did do doxy 2 months after bite. I will still ask my LLMD to run a titer-can't hurt
Posts: 1276 | From maryland | Registered: Jan 2009
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jackie51
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Member # 14233
posted
I thought, and I could be wrong here, that the testing for ehrlichia was somewhat accurate. Again, it always depends on what lab, what day, where you are in infection, what's considered positive, would the doctor even know how to read it, blah, blah. So, a negative doesn't necessarily rule it out. You would think Igenex would get it right, but there are so many variables.
Be glad you don't get headaches. :-]
Remember, this stuff lies dormant until we are stressed too. If you were still building up your immune system after your last round of treatment, maybe it's something else. I.e., food, mold,allergies, or other infectios, myco, chlaymdia pneumonia.
It sounds like, and I'm no doctor, that your original treatment did not get you fully in remission. Babs is a ***** to get rid of and by far is the worst for fatigue, at least for me.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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nefferdun
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Member # 20157
posted
apljack, I also have one ankle that is swollen - actually above the ankle there is a swollen lump.
I am not experiencing ehrlichia symptoms very often now. My main concern is trying to get rid of the babesia duncani. But it is still there.
-------------------- 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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