IV antibiotics

[Hopeny]

Has anyone done this with their child and was it successful? While my daughters major hip pain is gone, and psych symptoms have calmed down, she is in serious pain. We have been hard at it with abx since May, and I can't stand seeing her in pain like this. Her LLMD wants to give orals more time but I am wondering if we should discuss this topic again. Her case was missed by about 2.5 yrs, pain and psych are her main symptoms. She also has PANDAS complicating things.

[cdnmom]

I am still new to Lyme Disease but I attended a lecture last night by a renound Canadian Lyme doctor who spoke about using IV antibiotics if a patient is in the chronic stages of Lyme, which by his guidelines meant having Lyme for 7 years plus. This is probably not his only criteria, as I think Lyme doctors would also look at current symptoms. Are you sure she was only missed by 2.5 years, symptoms can remain at bay, even though the infection is present. I would speak to your LLMD about it if you don't see much improvement on the antibiotics, although I have heard from several people that it sometimes takes 5 - 6 months to see much improvement.

[mdmom]

Hopeny - I sent you a PM

[Hopeny]

I am still new to Lyme Disease but I attended a lecture last night by a renound Canadian Lyme doctor who spoke about using IV antibiotics if a patient is in the chronic stages of Lyme, which by his guidelines meant having Lyme for 7 years plus. This is probably not his only criteria, as I think Lyme doctors would also look at current symptoms. Are you sure she was only missed by 2.5 years, symptoms can remain at bay, even though the infection is present. I would speak to your LLMD about it if you don't see much improvement on the antibiotics, although I have heard from several people that it sometimes takes 5 - 6 months to see much improvement.

 

Thank you, the hard thing with her is she has had about 70% improvememnt in psych, anxiety and OCD, her bad hip arthritis went way with 60 days of Augmentin/Biaxin, but the other pains are still agonizing. So we have seen improvement, but not enough. It is possible she has congential Lyme and then got a bite in 2010. But prior to April 2010 she was a healthy, happy, outgoing, active child. She has a textbook presentation which my idiot pediatricin missed, fever, headache, leg pain, severe lethargy in April 2010. Heartbreakingly I got the bloodwork copy in Jan 2012 when she tested CDC positive, and saw that in April 2010 she had Band 41 IGM positive and the pediatrician should have retested and treated. In March 2010 there was a severe storm in my town (made the NY Times) and thousands of trees came down, were cut down. I can only imagine how many ticks were in the air at that time.The pain now is wearing her down.

[Hopeny]

Hopeny - I sent you a PM

Thank you

[rowingmom]

Just curious - your daughter's joint pain has subsided, but what other pain is she left with? My DD11's long bone pain (shin and forearm) and ticcing did not resolve until rifampin (for bartonella coinfection) was added to biaxin. Unfortunately it keeps reimmerging when we discontinue either Abx. Biaxin alone helped with her minor OCD, anxiety attacks, night sweats. Does your daughter have any coinfections?

 

Don't beat yourself up on the band 41 IgM - it is not lyme specific (only flagetta specific) and you could not have known.

[sf_mom]

Not to hi-jack thread but Rowingmom your DD has a lot of Babesia symptoms. I was wondering what your Dr.'s position on the possibility of treating. From your signature, here is what sticks out as Babesia: dizziness, chills and hot flashes, nightly fevers, pick like headaches 'especially if they are behind eye', pain and stiffness at base of skull 'usually includes stress in shoulder area can make it hard to hold up head'. Here is one of the better symptom descriptions for Babesia that I have found for BLO. Notice it is a Babesia like organism BLO. You are only able to test for two strains of Babesia and there are 17 known stains.

 

Overview: When a patients symptoms are predominately head and neck you must think of BabLo. When the patient has depression, anxiety, panic disorder, oCD, ADD with sweats that are worse at night, think BabLo. If the patient has severe memory and cognitive dysfunction with the same sweats as above, BabLo must be considered. For the patient (with any of the above) that also has temperature intolerance, layering clothing at night due to chill then throws off the bed covers due to overheating, BabLo cannot be ignored. If this same patient has racing or irregular heart rate and it is worse at night you are getting even closer to confirming BabLo. Air hunger can come with it. If the patient (with any of the above) describes their headache as weird, pressure, moving sensations, hot or cold, worse behind eyes, crown or in the occipital area consider BabLo. Babesia causes severe insomnia that is resistant to treatment.

 

 

http://www.wayneanderson.com/pages/diseases/babesia

[rowingmom]

Started a new topic

Edited September 19, 2012 by rowingmom

[Hopeny]

Just curious - your daughter's joint pain has subsided, but what other pain is she left with? My DD11's long bone pain (shin and forearm) and ticcing did not resolve until rifampin (for bartonella coinfection) was added to biaxin. Unfortunately it keeps reimmerging when we discontinue either Abx. Biaxin alone helped with her minor OCD, anxiety attacks, night sweats. Does your daughter have any coinfections?

 

Don't beat yourself up on the band 41 IgM - it is not lyme specific (only flagetta specific) and you could not have known.

Originally she had really bad pain in one hip, she was unable to sit on the floor (imagine how much of an outcast she felt in second grade as they were always on the floor and she was on a chair for half the year.) within 60 days of Biaxin/Augmentin that went away. I saw that as a huge victory but she tells me now she is in constant pain. I have been in a bit of denial I think but I need to face it. Her pain now migrates, knee, leg, arm, feet (constant and usually both feet but the other pains are one sided). She has lots of vision issues, blurry vision and seeing color swooshes on people/things. She gets the feeling of bugs crawling on her which goes away if she slaps the area. The suicidality is gone (so thankful for that!) but she still feels sad and asks what is the point at times. Anxiety and OCD mostly gone. Obsessive thoughts mostly gone, I would say all the psych stuff is 70% better. She tested + (some IGG and one IGM I think) for Anaplasmosis, Ehrlicia, ROcky Mountain Spotted Fever. Three negative bart tests, I want to do Galaxy but can't pull her off the meds for four weeks, she tanks in a few days if I take her off. Negative for Babesia at Igenex, Quest and Sonoma County, and doesn;t seem to have symptoms of that. High Myco, MTHFR 677T and elevated ASO (we see Dr B for PANDAS too). Our LLMD does seem to think there is some merit in trying Rifampin, and I am starting to as well. She has been on Abx for 5+ months I think includng 60 days of Doxy. We have had quite a number of happy days, she has even slept in her room by herself all night for a number of nights, but the pain is always there.

I totally blame the pediatrician first and am considering suing her, we live in NY and as I understand NYDOS guideline for IGM + Band 41 is to minimally retest or treat/restest. I am also considering writing here a long detailed letter with medical references so she never does this to another child. My moms instinct told me something was very wrong in 2010 but I listened to her. How I wish I had just thrown those symptoms into google! My biggest life regret.