rowingmom

I'm sorry too. Sometimes things can be so hard.

Emotional lability has always been one of DD11's herxes as are her Tourette's symptoms. Herx reactions are more common when gram negative bacteria, like lyme, die off. These can become quite severe if MTHFR deletions or other methylation cycle blockages are present. She has next to no symptoms now, but it has taken two full years of combo abx to get here. PANS is real. Have your daughter read the forum, she is old enough to understand. Have her read Saving Sammy or Brain on Fire. At this age it will be hard to help her if she doesn't want to be helped. Bands 39and 31 are borrellia specific and will not show up unless lyme is present. Lyme doesn't disappear. Your immune system either handles it or it doesn't. You may find a point of remission, but with stress or a depressed immune system it will return (kind of like chicken pox/shingles).

Yay! I wonder how long this will take to become mainstream knowledge?

I am sorry to hear about your poor son. It is so heart wrenching to see our children suffer. You are here now - know that help is possible! I would at least try for a phone consult with a PANDAS/PANS specialist or LLMD. They are the only doctors willing to put their practices on the line by treating with the long-term antibiotics needed to resolve these infections. You can talk until you are blue in the face and not convince mainstream doctors about the connection between psych disorders and infection/brain inflammation. Our LLMD (ILADS recommended) understands PANDAS (PANS) can be caused by strep, but also by other infections (Lyme and it's co-infections, mycoplasma, viral infections). In our case it was caused by bartonella. I have heard mentioned here of having a nurse visit the house to collect blood samples from children unable to leave the home. There are a couple of parents here with children suffering from an inability to leave the home because of high level ocd issues. I'm sure they will chime in. I know I haven't been of much help but you have started here on the road to some recovery. Maybe start another post mentioning high levels of OCD.

@ lismom - sorry about that. My posts would be SO long if I listed every abx we used! DD had been on biaxin/rifampin for 6 months or so (and doing so well) and remained on that when we introduced the pulsed tindamax. We found no resolution of the herx this produced until we started pulsing all abx and she was allowed time to detox. We did have a change in her procol at this time to pulsed azith, minocycline, plaquinel, malarone and tindamax (3 days on, 4 off). This brought her to the best place ever. We continued this from Nov 12 to Apr 13 when we weaned off everything, except Buhner herbals. As we ramp on the herbals we are continuing so see a small amount of quickly resolving herxing. DD still has positive bartonella titers, so I am not surprised. We are using the herbals continuously and not pulsing them. Buhner suggests Japanese knotweed for inflammation (not just resveratrol). We started with Source Naturals resveratrol (derived from knotweed and not grapes) tables, but have since switched myself to the organic ground herb from 1stChineseHerbs. It's disgusting but works. I make it into tea at the dosages suggested by Buhner. DD uses the tincture from WoodlandEssence. For glutathione we use NAC/l-glutamine every other day and liposomal glutathione BID. Does he have a negative reaction to epsom salts (which may indicate a type of methylation mutation) or is it an OCD thing?

Our daughter was first diagnosed with a motor tic disorder. The pediatric psychologist said that if vocals showed up and lasted for 1 year that DD would have a dx of Tourettes and we could then seek help at the Tourette's Clinic in Toronto. She was also rx ritalin and clonidine, which I declined. She has had motor/vocal ticcing for 2 years now, so if I chose to pursue it, she would have a dx of Tourette's. DD11's bartonella pain symptoms showed up approx 1 year later (motors and vocals were waxing and waning with bacterial/viral infections) and we started treatment with a LLMD who found positive bartonella (lyme coinfection) titers, and a MTHFR deletion. The LLMD feels that the bartonella infection is responsible for DD's Tourette's and other PANS symptoms. DD11's motor ticcing is highly correlated with her toxin load and increases with herx reactions due to bacterial die-off from abx (or herbal) protocol changes. As her body is allowed to detox the ticcing decreases. I chart daily using an Excel stacked column chart (symptoms (1-10) against date with drug changes/illness notations), which has been an invaluable visual representation of reactions to drugs/herbals/illnesses. Doctors love it too. One of the Moms here was kind enough to give me the template - I don't want to think about where we would be now without the help of this forum. There have been times when, shortly after changing/increasing a protocol she has been unable to read and has trouble speaking because of vocals or head jerking/eye blinking. After 2 years of combo abx treatment the LLMD decided to wean off abx, but continue with herbals (we are using Stephen Buhner's bartonella protocol). Within one week of weaning, her ticcing was non-existant - proof to me that when nothing is dieing off and no toxins are produced her Tourette's vanishes. But now as we ramp up to treatment doses of herbs it comes back a little with each increase in the herbal procol. She seems to detox from this more easily and is back to a low/non-existant baseline within two days. It has taken a long time, but it's so obvious to me now that DD's Tourettes results from die-off toxins and her inability to detoxify quickly. Her PANS symptoms seem to be associated more with inflammation.

Your son did well to tolerate 2 weeks worth of tindamax before a herx reaction! DD11 usually reacted the same day with increased motor ticcing and emotional lability. When we first started tindamax we pulsed it for 3 days a week while keeping her other abx constant (biaxin/rifampin - which had done a good job with producing visable improvements in her lyme/bart/PANS symptoms). Her herx reactions kept ramping up, despite being off tindamax for 4 days a week, for quite a while. We didn't see a herx/resolution type of cycle until we realized that, along with other abx (ones that she had been able to detox from earlier), the tindamax had produced such a die-off that she was unable to detox from it while dealing with other abx as well. When we started pulsing all the abx together (3 days on, 4 days off), allowing her a chance to detox, was when we saw real resolution of her ticcing (well, except for the beginning of each pulse, but those herxes declined with every cycle she did). That and adding malarone to the mix brought us down to a baseline of almost zero.

DD11's Bartonella IgG titers where 160 with Igenex when we started treating 2 years ago. They had come down to 80 recently, just when we decided to wean from abx therapy. She continues to do well, 2 months out now, and we are actually seeing more improvement with emotional lability, executive function and energy while continuing with herbal protocols. I would be interested in retesting at some point in the future to see if they have fallen further. Here's hoping! I don't know about Quest or Labcorp. The Igenex bartonella test alone is not all that expensive and I think it would be more meaningful if you kept your testing with the same lab.

I agree with tpotter. If a your current treatment is not producing results further investigation is probably needed.

Glad to see you made it to ACN. DD11 and I were at the cottage all weekend, so I haven't gotten around to answering your e-mail. From your posts, it looks you have been searching the archives. Lots of good information there, Keep at it . It looks like you have found some help, and it is a really wonderful feeling when you think you have found someone who understands. However as Hopeny mentioned in her first post, the IDSA is usually averse to treating for more than a couple of weeks, and probably wouldn't think much of multiple abx combinations. Please make sure the LLMD you are seeing is recommended by ILADS. They know which tests to run according to presenting symptoms, and the area of the country in which you live. This group, as opposed to the IDSA, feels that longer term treatment is often required to treat these infections. The PANDASL that your specialist mentioned is called PANS. It is essentially a PANDAS reaction to other infectious triggers; these can include lyme, bartonella, mycoplasma (I'm sure I'm missing some) as well as viral infections. Even before tests were run, our LLMD told me that DD11's PANS symptoms were the result of her bartonella infection. We tested for lyme and several co-infections through Igenex. Lyme was IND, bartonella positive, babesia and ehrlichia negative. We treated bartonella/lyme for 1.5 years with biaxin, rifampin and pulsed tindamax and plaquinel, as well as a partial Buhner protocol (Japanese knotweed and cat's claw), A-L and A-Bart (Byron White). She improved, but always a few symptoms remained. It wasn't until we pulsed a combination of minocycline, tindamax, plaquinel, malarone and azithromycin that her improvement became obvious - a decline of symptoms to almost nothing, almost immediately. After 6 months of that the LLMD decided to give her a break from abx to see how she was doing. No sign of relapse yet, and her executive function, emotional lability and shin pain are still improving - makes me hopeful, knock on wood! DD11 didn't test positive for babesia (protozoa), but the fact she improved almost immediately with the addition of malarone makes me think some protozoan infection may have been involved. Not sure if we will ever find out what it was.

Our daughter's sensory processing disorder was present from birth, and has resolved with her treatment for lyme/bartonella, as has her ticcing (to a great extent), emotional lability and raging. This is one of the reasons our LLMD feels DD was born with a congenital lyme infection. That and her negative reaction to her 15 month MMR vaccination.

Glad to hear you and your daughter are in a better place.

Zith/rifampin will do nothing for babesia. Towards the end of treatment DD11 was pulsing (get ready): tindamax, palquinel, malarone, minocycline and azithromycin. Previous to that she had done 1 year of biaxin/rifampin. We started out with bactrim, but she was allergic to it. Bactrim produced a huge herx-like reaction and then several days later allergic urticaria. An increase in liver enzymes as well.

The poor dear, I'm so sorry she's feeling so badly. We tried to discontinue abx a couple of times earlier in DD's treatment, but she too would relapse fairly quickly. We are at 2 months without abx now, and just keep seeing improvements in temperment and executive function, so here's keeping my fingers crossed. Even though DD didn't test positive for babesia, we saw an immediate decrease in symptoms (including bart symptoms) when we started treating with malarone - the LLMD couldn't understand why after 1.5 years of fairly heavy treatment for bartonella we couldn't get rid of symptoms, so thought babs was lurking in the background. Perhaps DD had some type of protozoan infection that we had not tested for, but she really didn't have symptoms other than bartonella. You mentioned difficulty breathing which is a typical babesia symptom - perhaps something to look into as well. Don't feel badly, you are doing the best you can. Your daughter is very lucky to have a mom who is willing to go to great lengths to help her get better. Just run the supplements past the LLMD before you try them and chart, chart, chart. I know it's hard keeping track when you are throwing everything but the kitchen sink at these infections, but just try introducing one thing at a time.

One drop on a toothbrush and all heck broke out the next day. @LLM - we seem to be in the same spot. DD is still showing bartonella titers of 80 (LLMD says that's positive), but she is in such a good place now; age appropriate behaviour, excellent executive function, capable of handling frustration, no PANS symptoms to speak of except a few (!) motor tics. Bartonella pain and fatigue seem to be a thing of the past, even with intense exertion, as are the rest of the 20 odd symptoms she presented with in the beginning. She is pulling off A's in school with no help at all from me. But then I see posts like tpotter's, and what her poor son is going through at the moment, and wonder if I should just keep at the antibiotics until IT'S ALL GONE!

Even after 2 years of combo abx treatment for lyme/bart, including tindamax (another cyst buster), we saw a huge uptick (from practically zero) in PANS symptoms (age regressive behariour, ADD, urinary frequency and motor/vocal ticcing - the likes of which I hadn't seen for 2 years) when the LLMD suggested we add GSE (1 drop/day) on DD's toothbrush for dental plaque - and we were at a point with pulsed tindamax that the herx reactions from each pulse were no longer even significant. DD was on 1 drop/day of GSE for a week before I realized it was the GSE causing her flare. What it was killing off, I have no idea. It could have been yeast as we never used nystatin or diflucan along with abx, but did use plenty of garlic, curcumin, oil of oregano, probiotics and fermented vegetables. We had discontinued curcumin at that point, but after adding that back in along with phosphatidyl choline and discontinuing the GSE we saw things calm down, but it took almost a month. It could have been a lyme or bartonella die-off as well, who knows. I assumed what we saw with the GSE was a herx reaction. When we initially started tindamax, we used it continuously. With no pulsed break, I found that herx symptoms just ramped and ramped with no resolution. It wasn't until we started pulsing and her body had a chance to really detox, that we saw the herx/symptom resolution cycle. Since weaning off of abx 15 April, the only thing that has caused a flare for her has been the readdition of A-Bart, which we ran short of for a couple of weeks. DD is currently on maximum dosages of the Buhner bartonella protocol, and we are ramping up the houttuynia (at 1/2 max dosage for that at the moment). The only herx reactions I see from houttuynia are emotional, and they occurr exactly 3 days after a dosage increase - interesting. I really believe that GSE and A-Bart, which are both causing herx reactions/flares for DD, need to be reinstated into her protocols. I will be talking with the LLMD - I think pulsing may be the way to go with these two, just as it was with tindamax.

Call them and ask. Try to get a brand with 75-85% carvacrol. I use drops (Joy of the Mountains) for myself but they are pretty strong. Nature's Way makes a capsule with the drops inside, so you don't taste them.

DD used to have trouble staying asleep and would wake at about 2:00 am and start reading. How she ever got to sleep first thing in the evening with the night sweats she used to have, IDK. Our LLMD said melatonin was fine to use (although they are notoriously heavy handed with drugs). We started using 1/4 of a 5 mg tablet and that seemed to keep her sleeping. After a year we were at 1/4 of a 3 mg tablet, and then I got drops so I could titrate down further. She now takes 1 drop of 3 mg/ml (more placebo than anything) if she has trouble going to sleep but she usually sleeps like a log now. I think the concern with younger children is that by using melatonin you will reduce the body's natural production of the hormone and then have trouble with discontinuation. However, our kids are sick and really do need their rest to assist the immune system in repair. Our reduction of the drops just happened gradually until she found she would forget to take it (I would forget to give it to her) and she would drop off naturally. She seems none the worse for 2 years of melatonin supplementation.

It's probably time to find a PANDAS specialist or LLMD. Don't waste too much time trying to educate your doctors or change their minds. Most are very resistant and will not think any better of you. Good luck.

My husband was the same way with lyme/coinfections. DD's pain symptoms started suddenly in Jan and DH's response was that it couldn't be lyme . . . it was too cold outside for ticks. This is from a PhD biologist. He actually told me I was crazy. I was undeterred. I decided that I didn"t need his approval to continue researching and finding an answer. I found a LLMD and DD started treatment. It did help that the bartonella PCR was positive, but he still didn"t believe that a bacterial infection could be responsible for neuro symptoms. Our marriage went through a tough couple of years, but with DD's healing has come an acceptance on his part, and he has had to admit that she is better. He has never thanked me for finding help for DD and now I don't expect him to.

Lyme et al. is notorious for messing with hormones of all sorts. I would investigate further into whether or not this is normal.

I agree with this as far as the point that any illness can trigger an episode, but am going to suggest that if strep tests were negative go ahead and draw titers on your 7yo. They will be high if there was a strep infection. The rash could have been viral in nature, triggering a PANS episode unrelated to strep. For all three of you to come down with a new allergic reaction seems a little unlikely to me.

This may sound horrible, but DD11 used 357 days of biaxin 250mgBID (she was allergic to septra) in combination with several other abx. We had no issues with it other than the initial herx.

Healing thoughts and prayers...

My father was an electrical engineer (and a little aspergerish) and his grandfather was a mechanical engineer. DD does not appear to have too much interest or ability in math however.