rowingmom

Holy doodle - Sherlock Holmes reincarnated! You are good!

I agree with pr40. The down-turn with azithromycin could have been a die-off reaction. You may have seen a turn around after several days if her system had been given a chance to detox. Many of our children have methylation blockages that decrease the body's ability to do just this, resulting in an ongoing buildup of toxic metabolites resulting from bacterial/viral/fungal die-off. With each change in abx protocol we have seen herxheimer reactions which consist of increased symptoms. Research detox protocols, they are important.

One of DD11's eye tics (usually blinking) has included an eye roll. She doesn't usually have eye tics unless she is ticcing very badly, but when the eye rolling starts she is unable to read or concentrate on anything visual - as you can imagine. She hasn't mentioned eye rolls causing dizziness, but I really don't see how it couldn't. I didn't ask her about this specifically. This has only happened a couple of times for her, and they have both been during herxheimer reactions from increased/changed abx/herbal protocols. These reactions usually start between 1-5 days after the medication change. DD11's motor/vocal ticcing is highly correlated with die-off or herxheimer reactions. At the moment we are weaning off combination abx for lyme/bartonella and her ticcing is almost non-existant. 2 months ago she was having trouble both speaking and reading. We try to increase new protocols slowly and wait until the initial die-off reaction has quieted down before we increase medication/herbal remedy/probiotics again. It usually takes a week of increased detoxing (herbal, epsom salt baths, lemon juice water) before her ticcing has calmed back down. You have made a lot of changes all at once, with the addition of 2 abx and two different probiotics, and I would image there has been a large die-off as a result. By adding more than one thing at a time, you don't know the culpret. I think I would ask your doctor if you could add these new medications in slowly. It helps to daily chart (excel) symptoms/reactions from 1-10, making notations on medication changes.

Wow, "months"! If she had said years, sign me up.

Our LLMD thinks DD11's stomach pain and cyclical IBS symptoms were actually bartonella. We treated bartonella for 1 year with rifampin/biaxin, and then added in a few more things in for babesia/lyme. Her pain would lay her out flat for 10-15 minutes at a time, and then resolve for a couple of hours. Pain and IBS symptoms were not part of her original herx. It was more shin/foot/skull pain and emotional lability. Her stomach pain has not returned since we began treatment 2 years ago.

Did the recent pencil incident occurr before or after you added clarithromycin? Herx responses are not only physical, but can be psychological as well.

Your mainstream doctor will most likely not be amenable to long term antibiotic treatment (we are talking months here). You should make an appointment with Dr L, especially if there is a wait, and get a diagnosis from a Dr who understands PANS and is able to rx proper treatment. You are so lucky to have a specialist close by.

I think this is it: https://www.freeconferencecallhd.com/playback/?n=-17-65-67-17-65-67117705049-17-65-67-17-65-67-17-65-677-50-8126-17-65-67;1NjQ2ODAxMDc=1

A sense of tranquility.....does this ever occur? We will have to give this a go.

Ticcing has always been DD11's herx reaction with change of protocol or increased dosage. I associate it with toxin burden. Her ticcing usually dies down after a few days and with plenty of detoxing. A couple of times ticcing has disappeared completely and I have gotten my hopes up, but it is now back at a pretty low level. I've almost resigned myself that she will always deal with this. The other PANS/lyme/bartonella symptoms are almost non-existant. There, now I've done it... The 48 hour time frame does seem like a herx to me. Especially if the ticcing was worse than before you began abx.

My concern is that we tend to assume the answers to these genetic tests show us a complete picture. While I agree that some results can give an indication of which type of supplements/foods/drugs may cause cause a negative response, but we have to remember that our understanding is far from complete. I was thinking about DD11's heterozygous MTHFR deletion the other day. While I was carrying her we had two ultrasounds indicating increased ventrical volume in her brain. She was born with deep bruising on her lower back in the area commonly associated with spina bifida. These markings remained for several years. The doctor said they were unimportant, and fortunately there was no problem with hydrocephalus. So I wonder if these potential complications were the result of my increased folic acid intake (as opposed to methylfolate supplementation) while taking prescribed prenatal vitamins. Specialists (mainstream and otherwise) are often ready to jump on the new bandwagon, so sure that any new information (ie at that time, the correlation of low folic acid levels with spina bifida) must be the definative answer. I certainly don't think our understanding of genetic signalling and the impact of diet, gut biota, the immune system, and it's responses to different types of infection are anywhere near complete. "Dr Bombay, come right away!" sometimes springs to mind here as well. The originals were my favourite as a kid.

Yay for the King! It took a year of treatment and the huge improvement we had gained by that point for my DH to agree with my insistance on treating "out-of-the-box". We saw great results with a combination of minocycline/malarone/azithromycin/plaquinel - symptoms declined to almost 0 . This was after 8 months of biaxin/rifampin which I thought was good and had reduced symptoms to a level of about 3/10. Addition of pulsed tindamax is still resulting in short-term herx reactions though. We have never used monotherapy, always abx in combination.

If you decide to use the abx, be ready for a possible herx reaction - either an increase of existing symptoms or the development of some new ones. Make a list of existing symptoms and rate them from 1-10. Note the day you start treatment, and start charting responses daily. Excel is good for this.

Do you want to investigate herbals? I think Raintree has one.

I just took a look at the BonTech ingredients and noticed that it includes the unmethylated version of B6 - pyridoxine HCl, as opposed to the methylated version - P-5-P, the unmethylated version of folic acid, as opposed to methylfolate. It doesn't list the type of B12 either. Anyone with methylation defects may have difficulty using regular unmethylated types of supplements.

EMLA

Our LLMD contributed DD's stomach pain, nausea, headaches, palpitations and racing heart to bartonella. Her stomach pain was so bad she would have to lie down in the nurse's office at school a couples times a day. These symptoms have completely resolved with combination abx addressing both infections. Not sure how she would have responded to one abx only. We are weaning now, so time will tell.

Thanks, I have read this as well. DD11's reactions seemed to be more yeast related - itching, giddiness, foolishness - things that haven't shown up with abx pulsing. She has never really had much in the way of lyme symptoms other than fatigue and some transient tingling, and neither of these showed up with the GSE dosing. Of course they don't show up with tindamax pulsing either. Her reactions to that constitute mainly motor/vocal ticcing and emotional lability. If only we weren't addressing so many issues at once!

Deleted, sorry

DD11, who has been on combo abx for 2 years now, developed an itchy rash (but not allergic urticaria), a huge upswing in motor/vocal ticcing and increase in giddy behaviour/urinary frequency when we added 1 drop of grapefruitseed extract to her supplements. I didn't figure that one out for a week! My first thought was yeast although she has never had yeasty symptoms and BM's are fine. There is no igg yeast testing available in NY or ONT. I told the LLMD I wanted to address yeast with a more natural protocol as we are weaning off abx. We have been using fairly high-dose probiotics since treatment started. DD is now taking 1 capsule oil of oregano capsule daily, 1 cap Life Extension Super Bio-curcumin daily and 2x caps ProtoCol C.Away (caprylic acid, paud'arco, black walnut oregano oil) daily as well as raw garlic. Her ticcing has decreased from about a 6 to a 3/10 (but still there) since beginning these supplements. The giddy behaviour/urinary frequency has disappeared. I, myself am now scared of grapefruitseed extract. If the GSE was indeed killing off yeast and causing the reactions I noted, it was much more potent than any of the other supplements I have mentioned. I am now scared of it. If we use it again, I will be applying it to the bottom of the feet to start off.

Sorry. DD was 9 and only on it for a short time before developing an allergic reaction.

Sorry, but I have to agree with Hopeny. You won't have much luck finding a PANDAS/PANS specialist or LLMD (lyme literate medical doctor) that accepts insurance. The treatments they use are often outside the scope of what insurance companies deem acceptable (long-term abx, multiple IVIG etc). Anyway, we are travelling from Canada to our lyme specialist in NY and don't have the option of using American medical insurance. DD11's treatments are costing us about. $1000.00 per month, or approx $25.000.00 for the 2 years she has been undergoing treatment. We plan to roll that amount back unto our mortgage when it comes due next month (rates are good at the moment). You will also have little or no luck persuading any mainstream doctor that your daughter's symptoms may be caused by chronic bacterial infections and the autoimmune reactions they can cause. Start reading the forum archives - there is so much hope to be found in the information available there. Please read my signature line. My DD11 suffered from all of the symptoms you list. She was so fatigued she couldn't play. Her executive function was minimal and she could not concentrate. Her doctor doctor said her pain was all in her head, that she didn't want to go to school, and that he would prescribe ritalin for ADD and clonapin for ticcing. Now she has more energy than most of her friends! She concentrates, is happy, compliant, getting along with her peers, is no longer regressing with viral infections, is getting A's in school, and no longer has pain (even with fairly extreme exertion). Her ticcing comes and goes depending on herxheimer reactions (all this new jargon you get to learn) she is having to protocol changes - it is at a minimum now as well. She is SO MUCH BETTER after 2 years of treatment that we are starting to wean her off combo abx. She has been treated by a LLMD in Buffalo, and we have recently added a naturopath in Southern Ontario to help us make the switch to a more natural protocol.

DD11 had an odor in her bedclothes and PJ's before she started treatment. I couldn't place it. Not urine or ammonia, but kind of along that line. Even in a clean bed /PJ's the night before, I would notice it in the morning (but with a dry bed). I wouldn't really notice it one her during the day though. Since starting treatment and detox protocols it has disappeared and not returned. We eat lots of raw garlic and don't notice anything garlicy (perhaps the neighbours might have a different opinion). She was not eating gluten at the time - I had removed it earlier in an attempt to track down her IBS symptoms. My thought is that it was an overload of bacteria and their toxins that the body trying to get rid of. DD does have a friend that she made before her diagnosis and starting treatment. A girl the same age who has been dx with aspergers, so she has some social delays/ocd/vocal ticcing. Her sister is quite autistic and her little brother has a dx of PDD-NOS. They all have the same type of odor. It's very noticable to me now. With treatment DD11 has matured far past this friend, and they no longer have much in common.

DD11 (lyme/bart/pans) has a positive ANA speckled pattern 1:10 "consistent with mixed connective tissue disease, scleroderma and sjoogrens sicca complex". DD11 had all the symptoms your niece has, except the bad ocd - hers was fairly minor. We have not retested since treatment began, but her symptoms certainly have improved. A quick search found: "Homogenous (diffuse) - associated with SLE and mixed connective tissue disease" My first thought a couple of years ago when I saw the positive ANA "consistent with mixed connective tissue disease" was that it was the result of the effects of lyme on her connective tissue - it just made sense to me. Doctor's don't seem to have a handle on the causes of autoimmune diseases effecting joints and connective tissues. Lyme seemed to be a good bet. I haven't followed that path any further.

We do use the protease enzymes for biofilm, but they have to be taken away from food so the enzymatic activity is not spent breaking down proteins in the stomach.