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Erlichiosis is positive!


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DS15 just came back positive on Igenex for Erlichiosis. When I read the symptoms to him from the internet, we both had a "no...duhhh" moment (headache, nausea, muscle pain.) He has had chronic nausea, terrible back pain that even the yoga teacher couldn't get to go away, and excrucitating headaches and it clears with the right kind of abx and also cleared with PEX.

 

Currently getting IV abx (started before we knew Erlichiosis was positive, because he had a very stubborn strep infection (ASO elevated). LLMD also convinced that there's bartonella, even though test results are negative, because 4 sets of stretch marks are fading while on IV abx.

 

Oh...btw...liver enzymes were getting very high (in 100s/200s) while on oral abx. They are now down to 40's/60's since treating with IV abx. I think that may help answer previous question seen (was it on Lyme or PANDAS forum) where someone wanted to know if increasing liver enzymes could be caused by abx. The doctor said that the enzymes may be going down, because we are not giving him abx that are going through the stomach.

 

BTW...also received IVIG the other day, and have extended the 2 weeks of IV abx to 4 weeks of IV abx, since we were seeing so many positive results (I've been keeping a log on it.) Only negative is that I have to keep getting up at 2 a.m. to give him the meds (every 6 hours), and then again at 2:45 to remove it! But, if this is what it takes, then I am more than happy (although terribly exhausted) to keep doing it.

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I think it's due to the cost $$$

 

Tpotter - can't believe it's been 2 yrs since we compared our sons' plasma in the PICU the way some moms compare baby pictures in the NICU! And here we are in lyme land together... So glad your DS is finally seeing results!! And that your 2 a.m. "feedings" hold such promise. :D We're not there yet, but hopefully, we'll both have war stories - but happy endings - when all is said and done.

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I am so happy that you have found some more answers and are seeing improvement with IV antibiotics! How come iv abx is not recommended more often for children...other than the ordeal of the procedure? anyone?

 

 

I think the ordeal is a big reason. TPOTTER's son is 15 which probably helps. My son is 13 and could probably handle it now but not so sure when his OCD was a little worse and he was not as mature. Add in smaller veins, risk of infection...

 

I think the above was the response I got from my doctor when I asked.

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I think it's due to the cost $$$

 

Tpotter - can't believe it's been 2 yrs since we compared our sons' plasma in the PICU the way some moms compare baby pictures in the NICU! And here we are in lyme land together... So glad your DS is finally seeing results!! And that your 2 a.m. "feedings" hold such promise. :D We're not there yet, but hopefully, we'll both have war stories - but happy endings - when all is said and done.

 

 

I know...I absolutely can't believe it's been that long...and what's more, it makes me so sad at times that we are still fighting this terrible thing (although I think I'm finally getting close to the bottom.)

 

In answer to the question about IV abx. There's no question it costs more, but it also requires a PICC line, and that's not the safest thing for everyone

 

 

Even then, there was no question my DS could not tolerate oral abx, and the first person who REALLY listened to me when I said that was our LLMD (DS had already had pancreatitis from oral abx last November, his liver enzymes have been elevated for the past 4 months, I wasn't seeing great improvement in symtpoms...just seemed to have a constant underlying of illness, and more recently, he went to the ER with enlarged spleen and low WBC, which indicates infection.) LLMD said (before the spleen issue) that maybe we should finally do the Igenex testing, because that could get him the approval needed for IV abx. Lyme came back negative, but he still had those pesky stretch marks.

 

It was a new dr. that I found out about, because I called to warn a friend who's son is in my son's class that my DS probably had strep, and we were having trouble getting rid of it (the other child also has PANDAS.) She told me about the doc about 45 minutes from here (a DAN doc), because our pediatrician (we shared the same one) was so not willing to treat, even though at this point, my DS clearly had elevated ASO's. We had another trip to the ER, where we found out about the spleen, and the next day, I called the other doc. He got us right in, and he was absolutely fantastic.

 

He convinced me to try a dose of clindomycin for a few days orally, and if that didn't work, he would order IV through home care. It was SO EASY!!! (I think I need the Staple's button now...whoops...am I going to get deleted for naming a company :-)?

 

But, I was positive we needed to try IV abx, because I knew that the only time we had had 100% improvement in the past was 2 1/2 years ago when he was admitted to CHOP for what they thought was ARF. He was there for 4 days, and was given IV abx. 100% improvement for about 1 week!

 

PEX came in a close 2nd for us (90%), maybe because it got rid of the toxins, so it might have worked like the IV abx...getting rid of the infection for awhile...just my opinion. But, he was 90% for about 6 months.

 

IVIG has definitely helped, but only for about 3 weeks at a time, but I'm sure that's because he still had all kinds of other infections he has been fighting.

 

That being said, I definitely think that IVIG is needed following whatever other tx is done, because it helps the immune system fight the illnesses.

 

At this point in time, we are CURRENTLY treating 1) strep (elevated ASO and symptomatic) 2) Erlichioses (postive Igenex, and certainly symptomatic) 3) probably Bartonella (stretch marks that are fading with IV abx), and who knows what else.

 

I have to completely thank those of you (and you all know who you are) who kept insisting that we check for Lyme, because I would never have thought to do it...plus initial symtpoms were following a severe sinus infection.

 

My fingers are crossed, because I really hope we can finally knock this thing out (but I know that it might just need constant fighting.)

 

I do highly suggest, though, that if oral abx are not working for your kids, consider trying to to get IV abx. Like I said, though, it is not risk free (then again, nothing we are doing here is risk free...including oral abx), BUT, for the first time in almost 2 years (since the PEX) my son is really, really feeling decent...not 100% yet, but I hope getting there.

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I am so happy that you have found some more answers and are seeing improvement with IV antibiotics! How come iv abx is not recommended more often for children...other than the ordeal of the procedure? anyone?

 

 

I think the ordeal is a big reason. TPOTTER's son is 15 which probably helps. My son is 13 and could probably handle it now but not so sure when his OCD was a little worse and he was not as mature. Add in smaller veins, risk of infection...

 

I think the above was the response I got from my doctor when I asked.

 

 

I agree...in part. My DS was 13 when he got it at CHOP. If he had gone in there at 7 with possible ARF, I'm sure they would still have given him IV abx, because he needed the intensity of the medication.

 

The bottom line is, if the oral abx is not working, and like my DS...actually making things worse (pancreatitis, enlarged spleen, increasing liver enzymes), then it may be time to fight for IV. Afterall, IVIG and PEX are not the "safest" things in the world.

 

But, if the child doesn't need IV abx, then I wouldn't suggest it (my DS18 does not appear to need it...he's tolerating oral abx well, and it seems to be working most of the time, along with IVIG.)

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I am so happy that you have found some more answers and are seeing improvement with IV antibiotics! How come iv abx is not recommended more often for children...other than the ordeal of the procedure? anyone?

It is an ordeal and it depends on whether Lyme is the prominent infection or not. My son had a picc line (it was stressful getting it put in) due to bells palsy that seemed to be spreading in spite of oral antibiotics. I was eager to get him the iv antibiotics because it crosses the blood brain barrier better. However after one month of rocephin he still had headaches and dr j recommended that my llmd treat for bartonella w rifampin. Within days his headaches went away so in our case the bartonella treatment was important too. It was the summer and it was hard for my active son to keep from getting really sweaty and to avoid exercising his arm. Several times we had to get X-rays to see if the line was still in place. Once a visiting nurse moved the line while changing the dressing. That was one of the most stressful things for me-watching the nurse change the sticky bandage without pulling the line out. Even the line is sticky from the tape so it is really tricky. My son ended up pulling it out in the middle of the night one night while sleeping. I guess he was itching it. He only had it 5 weeks at that point and the llmd switched to leaks at that point. If he had gotten it longer he might have gotten better faster but they don't want to install it twice unless it is absolutely necessary. Tindamax seemed to make all the difference in his treatment though and he got that much later. We spent a lot of time going to play games at chuck e cheese during this time because any other strenuous activiiy could have moved the line in his arm.

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Sorry tpotter, I didn't mean to hijack your thread. I didn't realize a picc line was involved (although, it makes sense :wacko: ). tpotter- it gives me goosebumps when I hear of his improvement--after all that he's been through!! Fingers crossed for ya!

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Tpotter - So happy you are getting positive results! Please tell your son how pleased we all are and that we are wishing him the best!

 

 

I agree with Lyme Mom. It is an ordeal, but one I knew was necessary at this point. I have a followup with his DAN doctor today (the one who prescribed it), his gastro (also today), and a telephone consult with his LLMD tomorrow. The big question is "what next"?

 

 

BTW. on a slightly different note...I stopped taking abx last month, because my liver enzymes were also going up over a 4 month period. As soon as I did, I started getting thumb pain, numbness and tingling in my hands when asleep, again. I'll mention it to the LLMD tomorrow (I bet he's going to put me back on something,) but does anyone know what that's about? It's really bothersome, and sometimes my fingers are so swollen, I can't get my rings on. I tested negative on the WB (Quest), but LLMD thinks I have, at least Lyme, and I had mycoplasma pneum for probably 3 years, before it was probably diagnosed (only thing that would help was azith.)

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I too am excited to hear your son is making improvement. BRAVO on long hard fought battle to get your son well and finding a treatment that is finally working!!!!!!

 

When you mentioned your son's symptoms on the PANDAS forum I definitely felt like Babesia might be an issue for him (enlarged spleen, low WBC, high liver enzyems, etc) I too am worried about my climbing liver enzymes and fearful the next step will be a IV antibiotics if things do not settle down. Again, I am being treated for Babesia but show up negative via Igenex. VERY, very symptomatic for Babesia though even have waves of 'the chills' regularly throughout the day.

 

Wishing you continued success with treatment!!!!!!!!!!! I suspect you may get further converted results in the future if you keep testing via Igenex. Ehrlichiosis is thankfully easier to treat.

 

-Wendy

Edited by SF Mom
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When you mentioned your son's symptoms on the PANDAS forum I definitely felt like Babesia might be an issue for him (enlarged spleen, low WBC, high liver enzyems, etc) I too am worried about my climbing liver enzymes and fearful the next step will be a IV antibiotics if things do not settle down. Again, I am being treated for Babesia but show up negative via Igenex. VERY, very symptomatic for Babesia though even have waves of 'the chills' regularly throughout the day.

 

 

 

Wow. You are really right (I just looked up Babesia.) In fact, it sounds like my other son and me, too.

 

I have a followup telephone consult with LLMD this afternoon, and I just wrote that into my notes. Thanks for mentioning it.

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Right on the mark about Babesia. That's what's so great about this forum...we all give each other the pieces of the puzzle.

 

So, LLMD asked if the dr doing the IV abx could continue IV abx for 1 more month...decrease clindo to 1X/day (higher dose), and then 3X/week do Azith (he was going back and forth on which to do, because of the possibility of babesia, bartonella, and the elevated numbers for erlichiosis...finally decided on azith.) He decided on this time period, because I mentioned that my DS had some things scheduled for the summer, and the current schedule would preclude him from doing some of them. Our DAN dr. (who is prescribing the stuff), said "no problem", so it will be started.

 

What we know:

 

MycoP (IgG) is elevated, but coming down slowly

 

ASO elevated, but coming down.

 

Erlich on Igenex was 20 (means that it might be active, might not be, but he has the symptoms.)

 

stretch marks are fading (they were probably bartonella)

 

spleen does not appear enlarged anymore

 

WBC back to normal

 

liver enzymes dropped dramatically.

 

We know this is autoimmune, because ANA was way high.

 

CamK came back (2 years ago) in PANDAS range.

 

 

This tells us that there is both strep and lyme/co-infections going on + other stuff (like MycoP, and who knows what else.)

 

But, IV abx, so far (and my fingers are crossed will continue), seems to be the "magic bullet" for now, and then we'll see what we want to do after that. For now, we are happily seeing improvement, and I no longer feel that we need to get PEX (I was positive that he needed it, because it had worked so well last time.)

 

When he went in for his followup to the gastro, he was very pleased, and said that he didn't think we needed to come back, since this was obviously infection related (he's probably right), and our followup with the DAN doctor , noted that my DS looked so much better to him (had his color back, more energy, etc.)

 

I'll keep you all updated.

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Fantastic News!!!!! I'm so glad the IV antibiotics are helping. I had posted something while back about Bartonella's ability to suppress Lyme and Babesia antibody response.... once the bartonella is gone sometimes the antibody tests will convert. What it comes down to again is addressing one infection at a time 'even if its clinical diagnoses and treatment is helping'.

 

http://www.latitudes.org/forums/index.php?showtopic=13656

 

-Wendy

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