Hopeny

I would highly recommend dr o in Connecticut who is about 60 minutes from NYC. She is an amazing pediatric integrative md who specializes in pandas and similar disorders and uses a combo of medical and supplemental treatment. From what others have posted dr t is amazing but very hard to reach/unavailable after the first visit and does not have Lyme and other related infection experience especially the cravings you describe, that's right up dr o's alley. She has really helped my kids and a number of others on this board. She went to a very good medical school and does both conventional and alternatives medicine. I will pm you her info if I can get my mall and login working properly

Hi and I am sorry if I am always ringing the Lyme and coinfections bell but it's definitely worth exploring. There is a lab infectolab in Germany that you can send blood to that can do a better test for Lyme. What makes me suspicious about Lyme in your sons case us that it got worse with steroids. Steroids are known to exacerbate Lyme. I believe there are some Lyme literate doctors in Germany and maybe elsewhere in Europe if travel is an option. Ilads.org should be able to give you a list. Typically combo antibiotics are used for Lyme and co for example rifampin/Zithromax, cefdinir/Zithromax, augmentin/biaxin. I am not a doctor, this is only my experience. As everyone else has said if treatment is not working and onset was sudden it begs exploring other infections. Good luck .

I think I am probably the only one but we continue to get the flu shot. Both my kids have really low general immunity and get sick too much as it is. Our new immunologist said only killed vaccines no live ones. My kids have not had any reactions before but that's just our experience. Tamiflu scares me so id rather have them do the shot.

An acupuncturist I worked with who used lots of natural remedies and even saw a shaman told me she only used antibiotics for strep. Our integrative recommended samento as a general anti microbial but antibiotics for strep

Unfortunately lice carry bartonella and other nasties so it's worth keeping in top of it ugh

I think i recall that your son had Lyme specific bands positive or ind, in this case I would think twice before using steroids which can exacerbate Lyme. Clindamycin, rifampin and mino are all used for Lyme so if I am remembering correctly about your test that may be worth a shot. Especially as the other treatments haven't had any significant impact.

Sorry to hear that. In cure unknown pamela weintraub discusses how she minimized costs for iv but I can't recall the particulars. Also you may want to try posting that question on lymenet as i know many people on that board have funded their own treatmebt. I had a very good result recently trying low dose arteminisin I compounded with EDTA from dr m (I know he has worked with dr h) even though my dd does not have babs we tried this for Lyme/Bart pain and her pain went away in a few days. Just throwing it out there in case you have not tried it, I know dr h is one of the best. Good luck

For us it was Lyme. We used it in combo with biaxin.i was skeptical because amoxicillin did nothing/made things worse but augmentin was very effective. Lyme tests unfortunately are complicated. What symptoms did augmentin alleviate? It's a powerful antibiotic and there are lots if infections it can treat.

I am wondering for those of you that have tested this how many do your kids have antibodies to? We just moved and though crossing fingers and toes we seem to be in the last mile of pans/Lyme treatment our new immunologist was alarmed by my dd's results of 3 of 14 antibodies . He is pretty much ready to call it cvid and treat. Thanks in advance

someone gave his name to me once as an llmd but I have no personal experience

Plain Amoxicillin does not seem to do much for my kids, we've had better success with augmentin (amoxicillin with another agent), biaxin , rifampin zith and cefdinir. I would more say amoxicillin is like trying to keep the dam closed with one finger

One consideration based on the nature if your symptoms would be to explore Lyme. I have read other accounts regarding Lyme with a similar group of symptoms. Many people do not see a tick/bullseye rash. Ilads.org has good information. Good luck to you

I would avoid miralax which has some type if link to autism. I was going to ask you about Lyme as well , which could explain the joint pain, psych issues and stomach problems. Lyme symptoms wax and wane. Was the cat disease bartonella by any chance?

Doxy may not be your best bet if its not a recent infection. You also may want to test for co infections in yourself and also look at concurrent herbal therapy. I wouldn't worry too much about the number of bands, that's author gary w's propaganda to protect his vaccine patents and insurance company finding.

Doxy may not be your best bet if its not a recent infection. You also may want to test for co infections in yourself and also look at concurrent herbal therapy. I wouldn't worry too much about the number of bands, that's author gary w's propaganda to protect his vaccine patents and insurance company finding.

My dd started needing to sleep in my bed right around the time she acquired Lyme ( we didn't know at the time, ped insisted it was a virus) she was age 7. If we moved her to her room after she feel asleep she wd wake up in middle of night and move to my bed. Several months after starting treatment around age 8.5 she finally started sleeping and staying in her room. My little one doesn't and has never slept well, we are trying to figure her out and are testing for yeast and tryi g magnesium. I feel for you. With my older dd where it was due to anxiety from infection nothing worked until she started to get better.

Maybe the reaction is a bartonella herx which comes from Lyme and also cats. Can you pull the bactrim and try rifampin instead? My dd had a horrendous rxn to bactrim. At least two md's I spoke to said bactrim should never be used. Have you tried burbur from nutramedix? It really seemed to help with Bartonella anger. We used five drops every four hours but usually only took one dose. Also I found too much mthf brought out a kit of symptoms in my dd. my husband has given me a really hard time about drs expenses too, where I have been able I have done without his knowledge. Also maybe you can call the town about your neighbor and those cats it's a real health risk. Hugs to you

My dd's myco levels have remained constant at igg>5 for the past 18 months, I have been to this high igg level indicates active infection. Aso has returned to normal but no matter what we do we are still dealing with it. Dr b told us cipro was a last option for this but I'm worried about side effects. I suspect dd got this from the same tick that gave her Lyme. Sorry I can't be more helpful I have the same questions

Beesknees the way most doctors in the Lyme literate community interpret the wb is that a Lyme specific band, be it one indeterminate which is a low reactive or multiple igm positive, is indicative of the presence of Bb. I have posted the Bb Lyme specific bands under a post called western blot, however from memory 31 is an "old Lyme" band meaning infection > 1 year and 39 is also Bb Lyme specific. Combined with symptoms your results would be interpreted as positive (my opinion based on experience and research). There us a very good explanation of the wb, conflicts of interests of those that wrote the CDC guidelines which I consider irrelevant, and reasons why results change over time in cure unknown by Pamela weintraub. There is also good information on ilads.org. My kids have both tested CDC positive but that was irrelevant for me, what was significant was the Bb specific bands that showed up and symptoms. One kid is now elisa highly positive but I am not treating based on no symptom. For the other, who still shows an igm positive Bb band (23), we are tapering off meds because her symptoms have gone away. My opinion would be if your DS shows symptoms consider consulting an llmd. Unfortunately uneducated doctors would te you the test was negative perhaps delaying appropriate treatment leading to failed treatment and ongoing symptoms. It has taken >18 months of continuous treatmebt for dd's symptoms to dissipate, that's longer than the length if time she was untreated! I know it's an ugly and unwanted diagnosis but IMO better to know the enemy so you can have the right team/tools. The other question this brings to mind is what co infections are you dealing with? Those can cause many symptoms as well. If your DS has no symptoms personally I would file the info away and wait/see. If there are symptoms then consider seeing llmd. We have been very happy with Dr M who llm also sees in CT. Good luck

At this stage past the basic boo boo I don't count on the ped for anything. Pretty much i am using specialists. Sorry I can't give you any insight into what it cd be but personally I wd consider starting with a pediatric cardiologist. Good luck

I don't know what happened to tbdalliance, they took the post down after getting swamped with negative comments but nonetheless it revealed something about the direction they are heading in.

I think you may mean .1%. In any case it's an acknowledgment of under reporting and a public health threat.

I think the cdc acknowledgement of the higher infection rate is significant into regards to getting research dollars allocated and to getting a new look at the treatment guidelines. The government is already funding pandas research with swedo's work. Since Lyme/chronic Lyme could be preventable education makes a lot of sense.

Laure I used to be a big fan of tbdalliance until they funded an interview with a doctor who toted the IDSA party line of 30 days of abx no more. There were hundreds of comments and eventually they took the interview down but never explained their position. Based on their hospital affiliations and affiliations with IDSA anti Lyme doctors I can no longer support them. It is very dissapointing what happened to them

My 4 yo had what we thought was mosquito bite and 30 data later a bullseye appeared. My friends dd got a weird rash at camp, famous renowned llmd said it wasn't lyme, a few weeks later kid had classic symptoms ( swollen knees, erc) and flaming CDC and ilads positive western blots. It's really hard to know for sure, personally I would err on the side of caution