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zithromax , Biaxin and minocyclin


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Hi All

Sorry haven't posted much of late. Dad and older brother passed away rather suddenly in a car accident last month in the UK and I've been in a bit of a funk. Just been keeping insane busy at work.

But

Does anybody have any experience with zithromax plus minocycline or zithromax plus biaxin for their child could you please share dosages and herxing experiences. We're dealing with a sudden severe exposure to strep, bone marrow edema/inflammation in DS and minocycline plus augmentin combo is not working too well. I wanted to try mino and zith mostly but can also do mino and biaxin.All three are testing ok with ART so I have to make a choice.

Thanks in advance.

Jodie

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Jodie - I am so very sorry to hear of your tragedy. Please let me know if there is anything I can do! My daughter has been on zithromax 250mg and Minocycline 50mg daily since December. You are in my prayers!!

 

Thanks Melinda for the info and your kind words.One of our "big shot" LLMDs has been COMPLETELY missing a vital piece for the last 8 months. Its a specific tick borne bartonella biochemical piece which can't be picked up with ART. One needs LLMD experience for that and I unfortunately chose the wrong LLMD to stick with. During our travels to the UK inspite of all the precautions DS came in close contact with real bad strain of strep. His Bartonella symptoms ramped up immediately (strep Bartonella is considered to be a recombitant strain as a growing area of research).We received temporary band aids of so called treatment for this flare up from our LLMD at that point.Tons of ups and downs for poor DS with no real answers. ART kept picking up Bartonella and strep but meds were not doing anything and DS's inflammation markers continued to go up.

 

We happened to have an annual follow up appt with our previous big shot LLMD and that physician was immediately able to pick up the missing piece, put us on minocycline and we see wonderful improvements albeit with severe herxing. Dealing with that now. Its still better than having your child unable to walk, even move pelvis down due to excrutiating bone marrow pain and swelling. The cause of which is/should be an in your face answer for a real experienced LLMD that its blown my mind how this was missed. I kept picking up errors on ART but it was shot down with each revisit. Being a recent ART grad I gave in to the supposed 'famous" person's experience and it was a huge mistake. My poor baby. I had him upto 100% when I was following my own instincts but one stupid decision on my part was all it took.

Anyways, major lesson learned, DS is healing and I have to work on the herx.

 

Its extremely important more than I can reiterate to choose an LLMD who also really understands PANDAS if your child has that concern. Ultimately it was something Dr T had mentioned during one of our numerous converstions that helped me and our previous LLMD to figure this thing out for DS.

 

Jodie

Edited by sptcmom
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Jodie,

So so sorry to hear about your family loss. I can't imagine the pain. I hope you are able to comfort yourself with warm memories and the love of those around you. I'm glad to hear you've found a missing piece and are back on track. I hope the recovery is quick and complete. You're in my thoughts.

Laura

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So sorry for your loss..... a warm heartfelt hug as you work your way though this rough period.

 

Your motherly instincts have always been good in guiding your treatment choices for DS. Remember that no matter what a specific Dr. is telling you. I often feel it is the Dr. or Dr's that end up the finish line of recovery that will get our families accolades. But truly, it has been all Dr's and a lot of other families experiences that have helped every step of the way. I have been back and forth many times with extended herx's and I am always amazed at what is truly left to treat. I know you'll be back to full recovery soon for DS.

 

Prayers, Wendy

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Hi All

Sorry haven't posted much of late. Dad and older brother passed away rather suddenly in a car accident last month in the UK and I've been in a bit of a funk. Just been keeping insane busy at work.

But

Does anybody have any experience with zithromax plus minocycline or zithromax plus biaxin for their child could you please share dosages and herxing experiences. We're dealing with a sudden severe exposure to strep, bone marrow edema/inflammation in DS and minocycline plus augmentin combo is not working too well. I wanted to try mino and zith mostly but can also do mino and biaxin.All three are testing ok with ART so I have to make a choice.

Thanks in advance.

Jodie

 

 

Very sorry for your loss.

 

Son has been on the following ABX for several months:

 

Augmentin 1000mg XR X 2 daily

Minocycline 50mg X 2 daily

Azithromycin 250mg X 2 daily

Tindamax 500mg tablet Fri pm, Sat am + pm, Sun am only

 

Unhelpfully, my son does not herx or if he does, it falls within 'normal' variations such that we do not notice.

 

He is 13 years old, ~91 lbs.

 

bill

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To answer your original question: Girlfriends son was on Azithro/Biaxin combo to treat Bartonella initially. He was eventually switched to Biaxin/Cipro. After one year of treatment his bloodwork is negative 'again' for Bartonella but still positive via ART and is currently on Azitro/Omnicef. I am sorry but don't remember dosages.

 

He is or was positive for Bartonella, Ehrlichiosis via bloodwork and IND for Lyme. He is or was positive in the last six months via ART for Lyme, Babesia, Bartonella and recently Mycoplasma 'possibly new infection due to recent illness'. He was positive for Strep but that resolved over 1 1/2 years ago with PANDAS treatment. BUT, that is not to say strep won't be a problem in the future again. These new exposures can really rattle progress until the individual rebuilds immunity and infection is at manageable levels.

 

We too had a recent bacterial exposure in our household. 3 individuals got sick with similar symptoms, one individual 'the nanny' recovered within 48 hours with proper antibiotics. Its been over a month and we are still problem solving DD situation. We went from feeling like she was almost recovered with only the Livedo rash as obvious symptom to a completely different child. Unfortunately, we had lowered antibiotics at time of exposure because we felt she was doing so well. She was sick within 4 days of lowering. What was working prior to exposure, stopped working and are in the process of problem solving with LLMD. She seems to be pulling out of it in the last 48 hours due to change in antibiotics and refocus on Bartonella 'surprise, surprise'... We go back to Dr. in two weeks to further problem solve the situation based on her response.

 

-Wendy

 

Edit: Exposure consisted of high fever for two days, sore throat and eventually a cough. Older PANDAS/Lyme DS responded normally to illness but he was on Azithro/Omnicef/Mepron at time. We home cultured him and he was negative. Nanny and younger DD were not cultured. We are not sure if it was Myco, Staph, Strep, Chlamydia pneumoniae or some other bacterial infections. We have another ART session with older DS soon so we will see if there is any residual infection.

Edited by SF Mom
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I too am sorry for your loss. The magic bullet for my son is minocycline and rifampin. 4 months of herxing and he's turned a corner. He had previously been on omnicef, zith and rifampin. The mino seemed to be the key. The bart came out full force in every way. Even the rash blew up all over his back and elsewhere. Now with things improving, the rash is receeding too. He also had high step titers for 2 years, HHV6 and mycop. I did treat the cysts during this time but have taken a break from that for now. Kathy

I do feel the rifampin was key as well. It gets so deep into tissues and other places some abx can't. The anti-inflammatory properties of mino aid with the toxic overload as well as being able to cross the bbb and go deep.

Edited by lismom
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I too am sorry for your loss. The magic bullet for my son is minocycline and rifampin. 4 months of herxing and he's turned a corner. He had previously been on omnicef, zith and rifampin. The mino seemed to be the key. The bart came out full force in every way. Even the rash blew up all over his back and elsewhere. Now with things improving, the rash is receeding too. He also had high step titers for 2 years, HHV6 and mycop. I did treat the cysts during this time but have taken a break from that for now. Kathy

I do feel the rifampin was key as well. It gets so deep into tissues and other places some abx can't. The anti-inflammatory properties of mino aid with the toxic overload as well as being able to cross the bbb and go deep.

How soon into treatment does the rash generally come out if it does for Bartonella? Andrea

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Goodness, so sorry for you loss!

 

Regarding your abx question, I can't give you any direct expeirence, as I have never taken zithro or mino, and really have always treated bartonella from an abx perspective with gemifloxacin, a fluoroquinolone which, like levaquin, is likely thought to be inappropriate for children. In case you had not run across it recently, Burrascano's guidelines mention for that drugs like zithro are used for children due to this issue. Then in another section, he mentions biaxin as somewhat more effective than zithro, although potentially tougher on GI.

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Thanks a million you guys for all your kind words and advice.Your support is invaluable to me.

We have been out of power for four days and just getting back on line. Hurricane Irene did quite a number on my neck of the woods in NJ.

I did manage to manage the horrible herx with mino and yes I know, it goes deep and helps a lot but its also the first time for DS so its doing its job with a tremendous amount of herxing. Infact just a couple hours ago I finally came up with a correct lipid, high protein, minerals and electrolyte intake protocol for his size and age. Will start tonight and hope to reduce this herx soon I pray....

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Jodie,

 

I am so, so sorry for your tragedy.

 

I am taking doxy + azith, and now have also added in rifampin (rifampin M-F and Azith on weekends.)

 

DH and DS18 are taking minocycline + flaggyl (I know you didn't ask about that combo), but DS is suspected of having c-diff again, so I pulled him off minocycline while we test, and DH seems to be getting worse since switching to minocycline from doxy.

 

I will keep you in my prayers. If there's anything I can do, please let me know.

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