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How long does it take to treat Bartonella?


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14 replies to this topic

#1 matis_mom

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Posted 12 April 2011 - 05:53 PM

OK, so... HOW LONG will we be at this? My kids are 6 months into Lyme/Bartonella treatment and I'm not seeing great results, I'm growing impatient!!!
This last weeks, PANDAS ds has been doing a lot worse. We had two kids with Scarlet Fever at the beginning of March. I got them checked and they are clear (or maybe I should take them back in again???). How can you tell a herx from a PANDAS flare? Right now DS13 is really struggling with obsessions and intrusive thoughts. The knee pain that he usually experiences at the beginning of a PANDAS episodes has not been mentioned, but now his heel hurts. His warts are out of control. I don't know what to do any more!!!


#2 lyme_mom

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Posted 12 April 2011 - 06:41 PM

If u have a good llmd try and have faith. It took my son two years and two months to get well from Lyme and suspected bartonella and he is totally well now 7 months after stopping all antibiotics. At times I wondered if he would ever get well. Heel pain is associated w bartonella. I have been told it can take a long time to get rid of bartonella-like at least five months. Each case is unique though and try anything that might help and won't hurt. Make sure the EMFs r not bad in his room. My son's bed had off the chart EMFs that I only discovered later on in treatment. Earthing.com has grounding sheets you can buy that apparently protect against EMfs by connecting you to the earth's energy while you sleep. We just started using these. I like them but not sure how much it is helping. Hang in there:-).

#3 cobbiemommy

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Posted 12 April 2011 - 06:50 PM

For me, this is a very timely post. We have been treating DS, 11, since late August and we seem to be having a flare of Pandas symptoms-paranoia, anger, anxiety. Doc wanted son on Bicillin shots again, which he is refusing to do. I refuse to try to hold down a 140 lb boy to make him get the shots. I begged the doc to put him back on Augmentin XR along with his Doxy and Zith. I'm trying to get her to do the "Saving Sammy" dose. The problem is, they haven't returned my last two calls. O believe that Augmentin XR uses the same type of med as Bicillin, but it is oral instead of injected.

If my assumption is faulty, anyone just jump in here and correct me. I have some Augmentin left from when they switched up his meds., wondering if I should give it to him or not......

Cobbie

#4 matis_mom

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Posted 12 April 2011 - 06:57 PM

If u have a good llmd try and have faith. It took my son two years and two months to get well from Lyme and suspected bartonella and he is totally well now 7 months after stopping all antibiotics. At times I wondered if he would ever get well. Heel pain is associated w bartonella. I have been told it can take a long time to get rid of bartonella-like at least five months. Each case is unique though and try anything that might help and won't hurt. Make sure the EMFs r not bad in his room. My son's bed had off the chart EMFs that I only discovered later on in treatment. Earthing.com has grounding sheets you can buy that apparently protect against EMfs by connecting you to the earth's energy while you sleep. We just started using these. I like them but not sure how much it is helping. Hang in there:-).

Thank you for the reply... It makes sense then to see a worsening of the mental symptoms along with the heel pain? I will take it as a herx and hold my breath. We did test for EMFs and everything looked good, but maybe I need to check again... he moved into the room with his older brother and I have to see where they have plugged things. At our house, all outlets are good if nothing is plugged in. But I bet they have the radio or something plugged right behind that headboard!!!

#5 matis_mom

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Posted 12 April 2011 - 07:06 PM

For me, this is a very timely post. We have been treating DS, 11, since late August and we seem to be having a flare of Pandas symptoms-paranoia, anger, anxiety. Doc wanted son on Bicillin shots again, which he is refusing to do. I refuse to try to hold down a 140 lb boy to make him get the shots. I begged the doc to put him back on Augmentin XR along with his Doxy and Zith. I'm trying to get her to do the "Saving Sammy" dose. The problem is, they haven't returned my last two calls. O believe that Augmentin XR uses the same type of med as Bicillin, but it is oral instead of injected.

If my assumption is faulty, anyone just jump in here and correct me. I have some Augmentin left from when they switched up his meds., wondering if I should give it to him or not......

Cobbie

Well, I don't know what to tell you... DS is on all of the above (Augmentin, Doxy (just switched to Minocycline because of the sun exposure thing), Zithromax), and still experiencing what seems like a PANDAS flare. We are waiting for the insurance to clear the Bicillin shots. As much as they hurt, they do seem to do something oral antibiotics cannot do. Doing them at home seems less traumatic than at the docs office, and the cream helps. They are dreading the weekly thing, but our doc wants to see if this gets them over the hump. I've seen my daughter start going down-hill and a Bicillin shot stopped it. I know it's hard, my kids hate it but they are very cooperative and non-violent (although my oldest goes nearly into a panic attack, I would not try it without my husband to help). I wonder how they'll look at us when this is all said and done, for all we've put them through...

#6 sf_mom

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Posted 12 April 2011 - 07:28 PM

Hopefully they will never remember being chronically sick.

My girlfriends son has been treated for Bartonella since June 28th, 2010. He had 3 hdIVIGs in November 2009, February 2010, May 2010 for thought to be PANDAS (strep resolved after first hdIVIG). The Bartonella is still not completely gone and they are following titers since he tests positive. Their Dr. believes you treat co-infections really aggressively first. He follows CD57, C4A and titer response for specific co-infection (if present)... Once those labs normalize the specific co-infection is believed to be gone and then he attacks the Lyme with a cyst buster. He believes Lyme typically resolves rapidly once the Bartonella is completely gone. They are continuing to hold protocol and it will be at least one year of treatment before a cyst buster is even considered. They do not see their Dr. again until July.

Hope that helps to give you some perspective.

-Wendy

Edited by SF Mom, 12 April 2011 - 07:33 PM.


#7 fallingapart

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Posted 12 April 2011 - 08:39 PM

This is my exact question. I don't have an answer only our current experience.

We let grandma come to our house even though she is a known strep carrier. In the past DD has reacted violently almost immediately. This time, it took 4 days to see anything. After 4 days all PANDAS symptoms resurfaced and we thought for sure it was a flare. Once grandma left (she will not be welcome here again util if/when this ever gets resolved) we treated DD the way we usually do to no avail. Over the past 8 months we have treated DD homeopathically whenever she is exposed to strep and somehow she magically gets fixed. I am shocked but thrilled to have found this. However, this time, it didn't work. We tried 3 different doses and nothing.

We just returned from the homeopath a few hours ago where we gave DD a completely different remedy and I can't quite tell if this one worked, but I do think I'm seeing a positive change. Based on all of this, I'm going to call this a herx. That is scary as he!! to me because this looked IDENTICAL to a PANDAS flare. My adrenaline never seems to come back to normal.

How long is it going to take for this herx to end? My nerves are shot and I am hanging by a thread.

#8 smartyjones

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Posted 13 April 2011 - 06:25 AM

mati'smom -- have you added anything that would be a detox agent? for myself, i had a bartonella rash, weight gain, increase in migraines and an ear buzz 4 months into treatment. this was acually around the time i tried bentonite clay. is this coincindence? i don't know. did the bentonite pull something from my body into the forefront?

our dr talks about - my laymans description - of the 'alpha dog' of infections. if you have multiple infections, perhaps they keep each other in check. as you rid of the most prominent, you may see more symptoms of another, rather than an expected 'feeling better'.

just some thoughts. good luck.

#9 matis_mom

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Posted 13 April 2011 - 06:34 AM

My nerves are shot and I am hanging by a thread.

Ditto!

#10 sptcmom

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Posted 13 April 2011 - 01:29 PM

In my experience doing conventional meds and the amount that our kids need all by themselves are just not going to show us any improvement. Detox and drainage simply cannot be overlooked. Its a huge component. Many kids literally need to be taken off all conventional meds to detox and drain before they shed their so called herx symptoms.
Herxing is considered "good" because its a clue that the meds are doing their job. Its not "good" for the body by any means. Herxing as we know means toxins are flooding your body faster than your body can handle them. The child's body is clearly asking for help.
Rotating abx, etc and adding on new conventional meds simply won't do it.
In our kids with the entire biochemistry and physiology gone wonky, we need a huge helping hand from holistic meds.
Bartonella is the hardest coinfection to get rid of unfortunately.
Will pm you back later.
Jodie

#11 matis_mom

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Posted 13 April 2011 - 05:18 PM

In my experience doing conventional meds and the amount that our kids need all by themselves are just not going to show us any improvement. Detox and drainage simply cannot be overlooked. Its a huge component. Many kids literally need to be taken off all conventional meds to detox and drain before they shed their so called herx symptoms.
Herxing is considered "good" because its a clue that the meds are doing their job. Its not "good" for the body by any means. Herxing as we know means toxins are flooding your body faster than your body can handle them. The child's body is clearly asking for help.
Rotating abx, etc and adding on new conventional meds simply won't do it.
In our kids with the entire biochemistry and physiology gone wonky, we need a huge helping hand from holistic meds.
Bartonella is the hardest coinfection to get rid of unfortunately.
Will pm you back later.
Jodie

Thanks Jodie! I'd like to hear suggestions on how to detox, I am really getting confused (and financially drained) with supplements. It feels there is not enough time in the day to take all the meds and supplements and detox and live a life!
I am feeling more and more piling on the abxs is not the answer, but at the same time I'm looking at the possibility of dd8 having strep again, so this would not be the time to switch anything... I am really disheartened this week... Maybe it's because I myself started Doxycyline on Saturday??? Hey! Maybe I'm the one herxing and driving everyone batty!

#12 mama2alex

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Posted 14 April 2011 - 10:02 AM

We've been treating Bartonella for 7 1/2 months and one month ago our LLMD said its not gone yet. He switched our Azith and added Cipro and also added TransferFactor LymPlus.

I haven't seen anything that I thought could be a herx until we added the Cipro yesterday. Then he was suddenly getting in all kinds of trouble at school and started getting easily upset and very angry. Here's what we've been doing for detox since before he started with the LLMD:

Futueplex Antitox - Cellular Recharge
Futureplex Antitox - Gentle Drainage
Adrecor from Neuroscience (adrenal support)
Thyroplex from Karuna (thyroid support)
Glutathione (transdermal) - he tested deficient
Lots of water
Exercise every day (unless he's sick)
Epsom salts baths 2 - 3 times a week
Bentonite clay - 8 Tblsp/day

This protocol was from our DAN doctor.

He takes other supplements for yeast control, immune support, neurotransmitter support, vitamin/mineral deficiencies, so I know what you mean about not enough hours in the day for all of it. I feel like feeding him supplements is my full-time job!

#13 ptcgirl

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Posted 17 April 2011 - 03:12 PM

It is strangely reassuring to hear that others are in this with us. My dd11 has pandas, Lyme, bartonella, and babesia. For the first few weeks after starting augmentin, rifampin, zithromax, enula and tindamax (2 days/week), she herxed so badly. She was barely able to move, severe brain fog, pain, extreme worsening of OCD, tics, etc. Now it has been almost two months and most of the pain is gone and her symptoms are better than when she was herxing, but still worse than when she started the antibiotics! I'm so depressed and frustrated. My dd has been through so much and she is right when she says her life sucks. This is a nightmare that just seems to not go away. She's had pandas since 2006 (was diagnosed then) and most likely the Lyme and confections since 2008 (although not diagnosed until march 2011. I feel hopeless and try to act like it is all going to be okay when I'm with her. I am praying for this to all go away and let my child have a childhood. I am questioning everything at this point and wondering if we are doing the right thing at all. Has anyone actually cured their kid of this stuff? I would love to have some encouragement in all of this. Thanks!

#14 matis_mom

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Posted 17 April 2011 - 07:09 PM

It is strangely reassuring to hear that others are in this with us. My dd11 has pandas, Lyme, bartonella, and babesia. For the first few weeks after starting augmentin, rifampin, zithromax, enula and tindamax (2 days/week), she herxed so badly. She was barely able to move, severe brain fog, pain, extreme worsening of OCD, tics, etc. Now it has been almost two months and most of the pain is gone and her symptoms are better than when she was herxing, but still worse than when she started the antibiotics! I'm so depressed and frustrated. My dd has been through so much and she is right when she says her life sucks. This is a nightmare that just seems to not go away. She's had pandas since 2006 (was diagnosed then) and most likely the Lyme and confections since 2008 (although not diagnosed until march 2011. I feel hopeless and try to act like it is all going to be okay when I'm with her. I am praying for this to all go away and let my child have a childhood. I am questioning everything at this point and wondering if we are doing the right thing at all. Has anyone actually cured their kid of this stuff? I would love to have some encouragement in all of this. Thanks!

Not much to offer here but just yesterday I was thinking: "If only I could fast forward and see them well again, some day in the future, then I could come back to today and say, "This is all going to pass, you are going to be ok"...and I could endure this a lot better. But, just like you, I don't know when this will end, and I feel like this has become our new normal... I don't want them to live like this forever! But I know, I know they will get well. I just wish someone could tell me exactly when that glorious day will be!

#15 sf_mom

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Posted 17 April 2011 - 07:32 PM

I'm going to bump up the news clip of ED. It will give you some hope on treating Lyme. He was very sick with TS, OCD and a few other misdiagnoses.... three years to get him well but he is off at college.




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