Ehrlichiosis

[browneyesmom]

Her specialist in CT called me today to discuss results of labs drawn in mid-February. Results:

 

Lyme (Igenex - third Lyme test we've run) = Negative

Myco P = Negative

Ehrlichiosis = Positive for exposure, which he said is viewed as positive and needs treatment. He called in 250 mg BID of Biaxin for four weeks.

 

 

 

My questions: I know Lyme and Strep can work together to prevent eradication of either. Is this also possible with Ehrlichiosis? If so, please let me know where I can find information on this to share with her docs - I've totally had it with the never-ending strep throat infections for over a year. Thanks!

[sf_mom]

Ehrlichiosis is not typically a stand alone infection. With TBI 80% of all those infected also have a co-infection. So more likely to have another TBI infection than not. With her IND results on band 31 and band 34 I would suspect the Lyme is there and not showing predominance due co-infection. I highly recommend seeing ILADS trained LLMD to help rule in or out the presence of Lyme with alternative testing. Treating with 14 days of Rocephin/4 weeks of Biaxin will not typically eradicate Lyme or Ehrlichiosis. You should anticipate a herx starting within hours of first dose or up to 72 hours. Often with extended herxs certain symptoms will build over time. We have had a worsening of certain symptoms for up to 12 weeks while magically one or two things improved. For others, the TICS and OCD have been worse for longer than 12 weeks.

 

I am not sure Ehrlichiosis binds to the same Facter H protein. The three specific bacterias listed in the article are M proteins of Streptococcus pyogenes, type 3 pneumococci and BB 'Lyme' binding to Factor H and hiding as compliment.

 

My friends son was on biaxin/rifampin for 4 months to resolve Ehrlichiosis and Bartonella. They are still treating Bartonella (10 months) and has always had similar indeterminate Lyme results. They continue to retest for Lyme looking for converted results. If they do not get converted results at the one year mark they will treat for Lyme based on remaining clinical symptoms. Again, very rare that Lyme is not involved when there is a TBI infection.

 

When you start Rocephin you could collect urine on days 2, 5, 7 and test for die-off. Igenex can provide test kit for Dot Blot/Urine PCR.

 

-Wendy

Edited April 21, 2011 by SF Mom

[sf_mom]

Oops.

Edited April 21, 2011 by SF Mom

[LNN]

Denise,

I know the overall Igenex test is negative and I know how anti-Igenex the other forum is - and you may be as well. I'm not defending the company and haven't done research on any criticisms against them. But I struggle with people who claim a lab would "throw in" some indeterminate bands to boost re-tests. My understanding of how this test works is that it looks for say, 50 antibodies to the protein measured in band 39. If it finds 0 bands, it's negative. If it finds 25 antibodies, it's indeterminate, if it finds 50, it's positive, 100 would get you a double positive (I'm totally making these numbers up for illustration).

 

So if the test finds 25 antibodies to protein 39, you get an "Ind". But something has triggered the body to make those antibodies. There's some sort of antigen present. Now, if it's band 41, it means the body has some sort of antigen with a flagella - a tail. Borellia isn't the only antigen that has this tail. So it's a hint, but not conclusive evidence that borellia is "it". However, other bands are more "exclusive" to borellia, including 31, 34 and 39. There are lots of reasons that only 25 antibodies may be floating around and detectable for the test to find. Maybe the other 25 antibodies are bound up in immune complexes and aren't being detected. Maybe the onslaught of antibiotics have put some of the bacteria into a cyst form or l-form. There's a popular quote in the lyme world - "the absence of proof is not proof of absence."

 

Now, the overall test result is negative, because no lab can go running around screaming lyme when just one band shows something. But there have always been a few things about your situation that made me want to encourage you to pursue lyme. First, as Wendy says, you have a positive Erlichiosis result. So at some point in time, a cesspool tick bit your daughter. With the less than perfect lyme panel combined with the positive erlichiosis, I'd be putting more weight into those "ind" and positive bands, even though there weren't enough positive bands to make the overall result positive. For your daughter to only have erlichiosis would be like seeing Patrick without Spongebob.

 

Second, your daughter has struggled with a chronic infection for over a year that isn't responding according to the "script". To have to treat with a PICC line and miss a half year of school says, IMO, the body is way overwhelmed and for strep alone to be the only reason seems unlikely. I'm no doctor and no expert, but everything I've read braces me for a long battle to eradicate these kinds of chronic infections in my own kids. A month of treatment may bring great relief. But be on watch for a relapse. A month would be a miraculously short time to defeat erlichiosis that's been there for awhile.

 

You're posting this on the lyme forum and you're obviously going to get a biased response. It's human nature for misery to love company and those of us who've been down the Pandas trail and then switched course will naturally want to say "come join us" because our "truth" and experiences make us see things from a certain perspective. Take everything I say with a grain of salt. I'm by no means objective, and I have no medical background. But just recognize that your doctors are doing the same thing. They are treating what they know and what they see every day. It's why you see any specialist. But if they don't see erlichiosis and lyme in all it's presentations, they're going to rely on incomplete information to chart a treatment plan. Trust your gut, but realize how you see things will change over time and be open to re-thinking the "negative" labs if you're still in a similar spot in a few months. If you haven't read Cure Unknown, I highly recommend it. It may help you understand where the moms on this forum are coming from.

 

We all just want our kids to be well. I hope the things you're doing now bring your daughter and your family relief. In this case, I'd be happy to have you tell me in June that we were wrong on this one

 

PS- Wendy -can you post the research about the M proteins and factor H, particularly anything about compliment binding? My daughter has compliments 12 times above normal (94) and I know this may skew her labs. Would be really happy to read up before our LLMD appt next week.

Edited April 21, 2011 by LLM

[browneyesmom]

Thank you for the responses! For all the reasons noted, I'm not completely persuaded that the Lyme is indeed negative myself, which is why I'm posting on both forums and will be calling an LLMD today for an appointment for further analysis.

 

She does have a significant IgG deficiency also, which docs have been telling me is the reason she is unable to clear the strep infections for so long. This explanation does make sense to me as her immune system would not be strong enough to fight off the infection even with all the antibiotics; HOWEVER, I just don't feel fully confident in what I see on her Igenex (even with what little I know about Lyme and related illnesses at this point). Also, I know Lyme and Strep can bind causing more difficulty eradicating it.

 

Further, because of her history of known positive strep infections (rapids); yet, her titers never rise... I'm even more unconvinced... and of course, determined to fight this to this finish and re-claim my child!

 

Question: Is it possible to have Ehrlichiosis from a tick bite in which LD was not carried by that tick? I've just started reading about it and in my sleepy stupor last night, thought I saw something about that.

 

Another Question: How does the prognosis look for this stuff? Are kids treated for LD getting better or do they never fully recover?

[Suzan]

Hi, I wanted to mention that my dd sounds similar to yours where she never mounted her strep titers even in the presence of documented strep. Her IgM results were exactly like your dd's IgG in the beginning. After 3 months on lyme treatment, her IgM are now positive. I know that IgG should represent older infection and IgM newer, but I also have heard this does not always show a clear picture.

 

Do you think she was bitten by a tick? Is there a possibility that you could have lyme and it was passed to her?

 

Susan

[sf_mom]

So this is a tough one and I've posted before. My grasp is the Osp E hides as a compliment and attaches to the protein Factor H 'This may help the spirochetes to adapt into various host environments'.

 

Similarly 'binding of factor H to the bacteria has been shown to be mediated via the surface-expressed M proteins in Streptococcus pyogenes (7) and by the PspC family member Hic protein in type 3 pneumococci'

 

http://www.jimmunol.org/content/169/7/3847.full

[sf_mom]

I am not sure if Ehrlichiosis can be passed congenitally. I do know my friends son who has Ehrlichiosis and Bartonella. The mother is positive for Lyme Disease and is/was sick. She is not positive for co-infections currently via Igenex but suspected of having Babesia/Bartonella. She grew up in WI on a dairy farm, drank milk from the can, had twenty furrow cats so her diagnoses and improvement fit.

 

There is enough proof that Lyme and Bartonella are passed in-utero from Mother to child. However the question of Ehrlichiosis and Babesia passed has not been proven. Our Dr. is cautious and always says my son's positive Babesia is only an 'indication' that our other children and me have babesia too. I have classic clinical symptoms of Babesia, am being treated for it currently, felt much worse before better, I am now feeling better six weeks into treatment..... I am negative per Igenex for Babesia as a co-infection.

 

Again, when you start the new antibiotic document any and all increase in symptoms or new symptoms daily. We'll be around to help you sort it all out if she appears worse and help with Detox suggestions.

 

-Wendy

[browneyesmom]

I gave her dose 8 of the Rocephin this morning; she has 6 days to go.

 

Ped called me first thing this morning to discuss... it is possible she was bitten by a tick and I just never saw it - he said they usually fall off the host within 48 hours. We are going to try to hold on pulling the PICC until we have more information. He sent me to an ID who we are seeing on Monday... had an opening, fortunately!

 

Thanks for the link, Wendy... printing that for him.

 

Very interesting about the titers, Susan... my thinking has been along those lines due to my daughter's IgG deficiency... I suspect she just can't mount a response to the Lyme, if she has it.

[ShaesMom]

Good Luck with the ID appt next week. We saw one last week and when I asked if she believed in PANDAS I got the "eye roll" and "face grimace" in response and then a 20 minute lecture about how it doesn't exist. I was then told that there was no reason for dd to be on propabx and that there was nothing she could do to help us. She did say she believed in Lyme when I asked but would not do any testing for us.

[MichaelTampa]

The lyme disease proper comes from borrelia, and the ehrlichia is a different but. For sure, it is possible to get ehrlichia from a tick bite without getting the borrelia. Not necessarily likely, but of course, it can happen, all depends on that one tick that gave the bite had inside it.

 

I haven't studied the ehrlichia so much, hasn't been an issue for me, but I thought that was a bit more common to get from whatever bugs/ticks hang out with horses. So perhaps in that venue, it would be easier to get ehrlichia without borrelia.

 

What I thought I read on the bands, IND versus positive, is they are actually reading lines/bands on a piece of paper, there are no numbers available, but the chemicals/proteins/antibodies/whatever end up making marks on a paper, and if there is nothing there for band 39 it is IND, and if there is a line "so thick" by band 39, then it is single positive (double thick is double positive, ...), and if it looks like there is some line there, not nothing but not thick enough to be what has been defined as single positive, then it gets IND.