I don't know what's going on - treatment plan?

[chubbermommy]

I'm not sure how things are going with us.... it's hard to tell if we're making progress or not. Could someone please look over what we're doing and based on your experiences, if it's a good plan? should I just be more patient? Thank you so much!

 

I'll start with when DS was dx'ed with Lyme in May. He was not on any abx, tics were very bad - screaming tic, large movements (punching, kicking), biting himself and things. Did some herbals (Biocidin) but caused a big herx.

 

In mid-July, we started Augmentin (1250mg/day) and things settled down slightly and plateaued - no more screaming but still some biting, and still large movements.

 

In mid-August we added 500mg Biaxin/day. After 10 days, the tics decreased and the first week of September, the tics were 85-90% gone - so good! We were hopeful but the first weekend (Sept 6-7), he woke up one morning and all the tics were back. DD had a cold/cough and soon DS came down with it too. After a week of flaring, things settled down slightly again but he was back to like he was before he started the Biaxin.

 

So mid-Sept, the Biaxin was increased to 1000mg/day because he had a positive reaction to it. However we seemed to have plateaued again, with some flaring this week (full moon?).

 

My understanding is that with treatment, flares start to become less severe. I also hear from some that after adding this or that, all the tics were pretty much gone. I don't know if we're heading in the right direction? We do lots of detox, enzymes for biofilm, arabinogalactan and probiotics for gut, boswellia complex for inflammation. We're waiting on the results from Igenex for the co-infections panel. What am I missing? This is so frustrating! Thanks for any input.

[msegal7]

Hi,

First I want to say that I have felt like you feel more times than I care to remember. Hopeful for a time, only to have my hopes dashed by backsliding. I'm sorry you are going through this.

I can tell you that each time this happened, we did not see a resolution in ticcing or other behaviors until we made a protocol change. I don't know why that is, but I have hypothesized that there is some bacteria that is being treated by the current antibiotic and then something else rears it's ugly head. The approach is certainly not one size fits all. It's almost a game of trial and error and the error is so overwhelming that it can actually paralyze you from the effort.

My son, 13, is at about 90% right now and on a myriad of medication. I think that most of the last 10% is a detox issue. We have tried to add several detox agents recently, only to have an increase in symptoms. I realize that this might be a good sign but it is hard for him and for us frankly. We currently use milk thistle, japanese knotweed, magnesium and pro and pre biotics.....tried chlorella and had a major tic resurgence.

When we added Minocycline, things improved quite a bit. We had a great run with biaxin for a while but then it appeared to stop helping. I am not sure why. I am about to embark on some of Buhners anti microbial protocol in an effort to move away from all the antibiotics. I have a feeling that our other 10% may not get cleaned up from traditional meds. Even when we pulse tindamax, we see improvement but not to 100%. We've been treating for 2 years.

I know it is easy to get discouraged. It's a roller coaster of emotions and it's so exhausting. The good news is that so far the flares never bring us back to where we were before diagnosis. There is hope.

[Dedee]

It is so very frustrating when dealing with a flare. Just keep in mind that it takes about 6 weeks for the average flare to resolve (coming from a PANS specialist). So even doing everything right, sometimes we have to give Mother Time its due. Believe me, I know how hard that can be. It is important to use as many antiinflammatory agents that you can. We try to use natural therapy, although I also use ibuprofen when desperate.

 

I have recently started using some oils that have antiinflammatory properties to them. Also, Enhansa (Tumeric) is a good antinflamatory. It is very much trial and error. Just be patient and realize that you are doing a great job. Take it one day at a time. Make sure you are working with a specialist that is knowledgable in Lyme treatment. That is your best advocate. Best of luck.

 

Dedee

[chubbermommy]

Thank you for this; I needed to hear it. I feel like I'm always treading water, never really getting anywhere. I don't like this feeling of only surviving and not actually progressing. I'll take comfort in the fact that my DS is happy 95% of the time and able to go to school, be with friends and be (almost) like a normal kid.

 

I like to be in control so it's hard when I don't know why his symptoms are getting worse or not going away: is it the Lyme? does he have a co-infection? are we using the wrong abx? is he herxing, should I do more detox? has he picked up some virus from school? does he have parasites? sometimes I even think, does he even have PANS? what if he has a brain tumour? arrarrhghgarhghgh!!!

 

Whew! I just needed to vent. I'll try to be more patient and positive. Thanks.

[ktdommer]

I can tell you what we have done for Lyme and it is way more integrative. I'm wondering if you are with an ILADS s trained doc? I notice right away that there seems to be no cyst buster in the treatment plan. A good doc would diagnose coinfections clinically. For my son Igenex didn't pick up babesia but LabCorp,did. Also bartonella is there clinically with the scratch marks in a deep purple lab work never shows anything with that coinfection.

You didn't mention a virus treatment. Maybe waiting to start. Have labs been done?

My son is also treating low testosterone and thyroid, low immune system, vitamin deficiencies and poor sleep.

How old do you think the infection is? congenital? Have you been tested?

If I could go back in time, I would have sought out one of the top Lyme docs. It was puberty that made everything worse. I would have been more aggressive with IV. It was so scary at first and proved to be the most helpful. Would have done it for longer and pulsed different IV meds.

Lyme and PANDAS is a difficult journey to healing. I wish you and your son the best.

K

[chubbermommy]

Thanks ktdommer. I believe this started summer of 2013; I don't think it's congenital, but who knows? Unfortunately, we don't have an LLMD We have an LLND who trained with Dr. Jones here, but she doesn't/can't prescribe our abx. I realize we don't have a cyst buster too. I will ask at our next appointment.

[pr40]

i don't see any probiotics on your list of medicine.

I too would suggest change of protocol but perhaps after giving this one a bit more time.

We had some luck with Ceftin.

is it possible that your child has an autoimmune condition not only Lyme?

[chubbermommy]

Oh, did I forget probiotics? We do probiotics, 75 billion units (or whatever the units are), and also sacc. B.

 

He does have PANDAS/PANS. He was initially diagnosed with PANDAS b/c his throat swab was positive for strep (he was asymptomatic), but now I believe his immune dysfunction was caused by Lyme in the first place, and strep just happened to come along. But we haven't done other tests like Cunningham panel to say for sure he has PANDAS/PANS.

[pr40]

sacc B can often cause bad reaction. we can give it only once a week.

if it is an autoimmune condition is he on special diet?

if you are not doing that, it might be worth a try, both gluten and dairy free.

[chubbermommy]

He is gluten free, and very low dairy.

 

He's doing better today. I think he might have been going through a massive herx. We'll see what happens this week.

[rowingmom]

I think that most of the last 10% is a detox issue.

 

I would agree with this. Herbs for bartonella kept DD steady at 80% after she weaned bartonella abx.

 

Babesia herbs got her to 95% - we didn't know we were dealing with babesia because her Igenex duncani/microti tests returned negative.

 

3 drops of cilantro TID, with diatomaceous earth QD has gotten her to 99%. Cilantro/clays are often used for metal detoxing and we have found a big decrease in electrosensitivity since starting this protocol as well.

 

DD's remaining 1% is a suggestible mouth tic. It only occurs when I ask. All other PANS/PANDAS, bartonella, lyme, babesia symptoms have resolved.

 

Lyme is not often found on it's own, and the coinfections tests can return negative even if there is infection.

 

This may be because the immune system isn't strong enough to produce significant antibodies to the infection, or because there are sub-species involved that are not being tested for.

[chubbermommy]

What brand of cilantro do you use? Tincture?

[rowingmom]

We use Flower Fairy organic cilantro tincture. I order it from TheCanadianVitaminShoppe.

 

Do not use too much or you will mobilize too many metals at once. Make sure you are using a binder in the gut. We have been using food grade diatomaceous earth - 1tbsp 1x daily. Clays can be constipating so I mix the DE with the daily dose of psyllium.

 

Not sure how this will go over with a younger child. DD will drink it, but she is 13.

[chubbermommy]

Thanks rowingmom. I may not start using it yet, I'll consult with ND and file this info away for now. We use chlorella for binder; I'm not too sure about using DE on my son.

[rowingmom]

I would definitely consult before starting.

 

Cilantro was recommended to us by Buhner's associate Julie McIntyre. She also suggested using zeolite as a binder, but I am not happy with the amount of aluminum that can be present in zeolite, so opted for DE.

 

Although Julie has not yet let us astray, so we may try zeolite at some point,