rowingmom

If I understand correctly, your daughter was being treated by Dr J for bartonella and lyme, right? Did you ever use rifampin? I know you have seen several experts in the field of lyme/coinfections. Our daughter always had flares with strep infections, but Dedee is right, that all cleared up with bartonella treatment and has not resurfaced. We didn't treat specifically for strep (or PANDAS) because the treatment is not offered through the Canadian Healthcare System, and we could not afford out-of-pocket treatment in the US. We treated bartonella-induced PANS by treating the infection with antibiotics. We did not do any immune modulation treatments (ie IVIG or PEX). I am not saying that IVIG or PEX would not help your daughter, as she seems to have a large amount of brain inflammation. But DD's PANDAS (strep)/PANS (other bacteria/virus) symptoms resolved with bartonella treatment alone. @ Dedee - The new Buhner book on mycoplasma/bartonella coinfections is wonderful. The best book he has written yet, IMO. If I am understanding correctly, he states his premise that the cytokine reactions (produced by bacterial infection) which are responsible for symptom etiology, are produced by the bacteria for a specific reason. These bacteria are parasitic. They scavange nutrients from cytokine-damaged tissues/cells/nerves to aid their own growth and reproduction. Buhner feels that probably the most important step in healing is to stop the cytokine cascade (inflammation reaction of the body), depriving the bacteria of nutrients. At that point immune enhancement and herbal antibiotics can be used to clear the remaining infection. What an interesting concept! Some LLMDs suggest withdrawl of certain minerals/nutrients from the diet in an attempt to starve or weaken the bacteria, ie magnesium, fat, etc. Buhner says this will not work, as our own tissues require the same nutrients, and cellular integrity and function will be compromised without them. A nutient dense diet is necessary. So instead of depriving the whole body of nutrients, deprive only the parasitic bacteria of nutrients by decreasing the inflammatory cytokine cascades with herbs that specifically address the different cascade pathways. In the case of bird flu which appears to be more lethal in people with healthy, functioning immune systems, the immune response produced by the bacteria and the subsequent cytokine cascade are responsible for tissue damage. In people with under-functioning immune systems, the response is less drastic and also less lethal. So this leads me to wonder whether lyme/bartonella decrease immune function to gain a foothold, or whether it is simply our body's attempt at decreasing the cytokine cascade (inflammation) and resulting destruction. Sorry, off on a tangent !

Maybe talk to your doctor about it first, and if the idea is OK'ed give the gym a try to see what his response is.

We were not. But we have always used probiotics, and lots of them.

In our case the LLMD told us that bartonella was causing DD's PANS/PANDAS/Tourette's/autistic reactions. After 2 years of combination bartonella treatment including: biaxin, rifampin, azithromycin, minocycline, tindamax, plaquinel, malarone, A-Bart, and A-L (not all at the same time), her bartonella IgG titers have decreased from 160 to 80 (so still there). Her PANS/PANDAS symptoms have almost totally resolved. She has been off abx for almost 3 months now, but we are still treating with herbals. If you are treating PANDAS you are treating strep infection and it's resulting inflammation. If you are treating PANS you are treating other bacterial/viral infections and their resulting inflammation. Inflammation is the result of the cytokine cascade produced by the bacterial/viral infections. Glad to hear Dr T is still treating her for bartonella.

Sorry, I had to chime in when I saw mention of JRA. The original outbreak and subsequent isolation of borrelia (Lyme) bacteria from the children in Lyme, CT, gives the bacterial infection it's name. We also have no other instances of Tourette's in either my or my husband's family. I spent at least a year modifying diet (gf/cf, low histamine, low salicylate, low oxalate) and made reems of food/reaction charts. Sometimes I would find improvement, and sometimes not. It was never lasting. We did multiple allergy tests; food, environmental etc., and the only test DD reacted to was the histamine injection. Ticcing would escalate with infections, especially strep. If a fever was involved, the ticcing would decrease during the fever, but resume shortly after. After years of daily charting using an Excel stacked bar chart of symptoms (levels 1-10) with protocol change/illness notations, I have come to the conclusion that our daughter's motor/vocal ticcing is the result of toxin buildup, resulting from bacterial die-off caused by either the killing action of abx or increased immune response. DD's MTHFR deletion may be somewhat responsible for this inability to detox, and we are using methylated versions of the suggested B vitamins, although that and the use of a paleo-type (gf/cf) diet never made a dent in ticcing when there was a die-off reaction due to protocol change. We have never done any other genetic testing, perhaps we should. There were times, especially when DD started pulsing tindamax (or grapefruitseed extract) that her ticcing (and other PANS symptoms) would ramp from 1 to about 6 in a couple of hours. After a couple of days (and several epsom salt baths later) ticcing would resolve to baseline. We have been weaned from abx for almost 3 months now, and are using herbal protocols to address her still positive bartonella titers. I am seeing the same reaction, albet at a much lower level, with increases in her herbs. It seems that now her infections are at a lower level, bacterial die-off is reduced, and I see a corresponding decrease in ticcing. Most of the time it is absent. With an increase in herbals, ticcing increases for two days, and then declines back to 0. These are just my observations, but in our case motor/vocal ticcing is definately linked to bacterial die-off and her inability to properly handle the resulting toxins. Sorry, Chemar for posting on your board if it isn't appropriate. I know you do a wonderful job helping others with genetic Tourette's!

Thanks LLM. You are so good at putting words to paper! Just what I would have said (if I had my act together like you do) . When we started out, our pediatric psychologist suggested PANDAS because DD was having considerable strep-associated flares. The first strep treatment resolved all of her issues (rages, ticcing, other PANDAS symptoms - urinary frequency, loss of handwriting/spatial abilities etc.). They then returned when the abx was discontinued. After the second strep infection, the abx (penicillin v) only worked for about 5 days, and then symptoms started creeping back. Whether this was the beginning of a herx reaction, or whether she had developed resistance to the antibiotic, I don't really know. After that the prescription ran out and we were back at square one. Because we are Canadian and there is no PANDAS treatment to be found here - and the treatments (ie IVIG, PEX) really put it out of our reach financially - I figured a LLMD was our next best option. We travel to upstate NY to see ours. Tests for the coinfections are indeed seperate from the Lyme test, and our LLMD ran several of them. DD was positive for Bartonella hensalae (there are many bartonella species), negative for babesia microti, ehrlichia, and anaplasma. She was IND - indeterminate or low level of reactivity for the lyme specific band IgG 39 kDa. The LLMD felt that she did not react strongly with this band because lyme and the coinfections can severely reduce the functioning of the immune system (ie low IgG, IgM reactions). Because the 39kDa is lyme specific, lyme had to have been present at some point. So we ended up treating mostly for bartonella, and didn't concentrate too much on lyme. DD saw her most pronounced improvement with the addition of malarone (which is used to treat babesia). Babesia tested negative, but perhaps another protozoan infection was involved - it's not feasible to test for every possible bacteria/virus out there. That's where LLMD's come in handy. They are familiar with treating using clinical symptoms and don't just rely on test results. They are not averse to a little experimentation and I am truly greatful for that. The LLMD wanted to give malarone a trial because DD was still not holding onto her improvements after 1.5 years of treatment for lyme/bartonella, and felt another infection could be involved. We have never tested for toxoplasmosis, although because it's another infection associated with cats (and DD has a huge affinity for them - kissing them on the mouth etc.) it is certainly a possibility. 6 months after the addition of malarone we were able to successfully wean DD from abx. We are continuing herbal protocols for lyme/bartonella because her bartonella titers are still positive. As for probiotic usage, we dosed abx before breakfast, probiotics before lunch, abx before dinner, and probiotics just before bed. We were using approximately 150 billion cultures/day of multistrain probiotics and had no problems, even while using combinations of up to 4 different antibiotics at the same time. I know that sounds drastic, but we have our daughter back. Now we just have to keep her here.

Rifampin is used by LLMDs, in combination with other abx, to treat bartonella infections. Our main combination was biaxin (clarithromycin) and rifampin. To that tindamax was eventually added. Emotional lability - raging, decreased tolerance for frustration - can both be symptoms of bartonella infection. Our LLMD believed that bartonella was causing DD's PANS symptoms, and they have decreased to almost zero after 2 years of treatment for lyme/bartonella. DD's herx (die-off) reactions generally happened within 2-3 days of changing/increasing protocols (1 day with tindamax). Her first was the worst, taking almost a month to recover from. The following were shorter and usually resolved within 7-10 days. If you haven't tested for bartonella, I would suggest that you might.

We are from the Niagara area and are seeking help in Buffalo, NY. Ticcing (both motor and vocal) were one of DD11's PANS presentations. Her ticcing started in Sept of the year that she had an unidentified rash from an insect bite (non-EM) (in August) and her MMR booster, also August of that year. She had the full contingent of PANS symptoms, except for noticable OCD. She did have a little OCD, but only I would really notice (drawing the same picture over and over). Our LLMD said that DD's PANS symptoms were caused by her bartonella infection and that lyme/bartonella treatment would resolve the PANS. It has. We have weaned off combination abx after 2 years and are continuing with herbal protocols. During treatment, DD's herx reactions (toxins released by bacterial (especially gram negative) die-off can produce or increase symptoms) was emotional lability and ticcing. At times when her ticcing became quite bad, she was unable to speak in sentences or read aloud. At other times she was unable to read to herself because the eye-blinking and head jerking made it impossible. When we started treatment 2 years ago, I began charting using an Excel stacked bar chart (thanks to one of the Moms here for the suggestion) plotting symptoms on the y-axis against date on the x-axis, with notations on changes in abx/herbal protocols or other illnesses whenever they occurred. This charting made it obvious to me that motor/vocal ticcing was the result of toxin release during bacterial die-off (whether caused by abx or by the immune system itself). IE - 1-2 days after changing or increasing abx protocols, ticcing and emotional lability would increase significantly, and then gradually resolve while the protocol remained unchanged. DD's ticcing became quite significant during abx treatment and I am sure that if we had chosen to go that route, her dx of motor tic disorder would have become a Tourette's dx, as she had both motor and vocal ticcing for 2 years. Our pediatric psychologist suggested the Tourette's Clinic in TO, but shortly after that we were headed in another direction . Our LLMD does suggest a gf/cf diet to decrease inflammation, so we do that. I'm not sure we saw a real difference, but continue with it anyway.

We have purchased a near-ir sauna for just the reason you mention - DD doesn't have much of a fever response. When she was still sick, any time she would develop a slight fever her PANS symptoms would decline significantly and mental functioning would improve. But once the fever had resolved her symptoms would return. The fever response obviously had some effect on her PANS reactions. If you google fever response there is quite a bit of information on activation of the immune system. Since we have weaned from abx, and would like to continue on a more natural path, sauna made sense to me. I chose near-ir because you can generate the same temperatures with little of the EM exposure you get from far-ir. There is also some skin penetration of energy (like far-ir), although whether it is to the same extent as far-ir, IDK. We haven't set it up yet, and probably won't until the weather gets colder. One thing - when I mentioned to the manufacturer that I was ordering it for our daughter (I will probably spend a bit of time in there in the winter too ), he told me that younger children (before puberty) do not have the sweat response that adults usually have. There can, therefore, be some danger of them overheating. He suggested that I take DD's temperature intermittently while she is using it.

Good. Glad you are going to see Dr T. Just please don't dismiss her bartonella infection, it is probably an important piece of the puzzle.

DD11 also had increased alt/ast upon starting bactrim, although significantly higher than you are reporting. She had an allergic reaction to it and we ended up switching to biaxin. With the addition on milk thistle her alt/ast numbers decreased to normal within a month. Your ast number is a little out of range, but not significantly. I wouldn't panic, but keep an eye. We tested liver enzymes every month while on abx. Now every 2-3 months on her new herbal protocol. If I am not mistaken, a babesia infection can be responsible for increased liver enzymes.

If I was you, I would include houttuynia. I think that is the main herb that addresses bartonella. We are using the powdered herb from 1st ChineseHerbs as mentioned on the Buhner website, and it has really helped me to feel calmer, and helped my foot pain. I just jump out of bed in the morning now! It's a lot cheaper than HH and at $15/lb, will last for ever. 1st ChineseHerb organic powdered japanese knotweed is wonderful for inflammation. I can row now and not have the overall body inflammation/pain I used to get from it. Just the expected leg/biceps/back pain.

Yes. Recovery is possible. I know our daughter was not as badly effected as yours, we weren't dealing with too much OCD. Just a little, but large amounts of motor/vocal ticcing, bone pain, headaches, raging, brain fog, an inability to think or plan anything for herself, extremely low threshold for frustration. Any frustrations would set off screaming, hitting, pounding her head. I can't imagine what her reactions would have been if she had been older and more aware of the cutlery drawer. After 2 years of abx, mostly for bartonella, but some for lyme too, her bartonella titers are half of what they used to be. If I didn't know that she was still testing positive, I would think she was cured. Happy, helpful, outgoing, able to get along with peers. She comes home from school, sits down and completes homework without me having to walk her through every step. There is no longer raging at the slightest frustration. In fact, sometimes I will try pushing her buttons just a little bit, and she handles it very well, very maturely. She makes her bed and sorts her laundry every morning. Brushes her teeth, gets school things organized and is out the door for the bus ON TIME. EVERY DAY. Without me having to mention a thing. Two years ago, I could not even imagine being in the place we are now. We are still treating bartonella, but with herbals now. She is herxing a little from them, and I develop anxiety every time that happens, but they are all appearing to resolve after a couple of days. I really don't want her back on abx, so I am hoping we can keep the infection at bay with our present protocols. Only time will tell. I imagine bartonella will always be lurking so we will have to take special care of her immune system by eating right, continuing with detoxing and supplementation, but that's OK to me now. I used to panic, thinking what if we don't manage to kill every last bacteria? But now I know that's not even possible. Nobody is aseptic. We all have bacteria. We just have to make ourselves healthy enough to deal with them.

Yes. He mentions this in both of his books. Japanese knotweed is the herb he uses to produce this effect. I though knotweed was good when I was taking 500 mg/day (1 Source Naturals capsule), but now that we are making tea from the organic powdered herb from 1st ChineseHerbs, and my dosage is 1.75 tsp, I really do feel amazingly pain free a lot of the time. DD is using the tincture from Woodland Essence, but I have added a little of the powdered herb to her houttuynia tea as well. Please do keep us updated. Our LLMD is fine with us using Buhner's protocol, but knows little about it. I am on a waiting list to be contacted about a consultation with his associate - sounds like it may be a while.

Greg Lee is also available for consultations, but you will need to physically see him for an intake first. Other than that, he can give general information, but nothing really specific.

Are you still with your LLMD? You might want to get the OK from him before you proceed. Buhner's website is wonderful, and all of his protocols and dosages are listed there. http://buhnerhealinglyme.com/ We have been having great luck with his complete protocol and as DD is ramping up with houttuynia, she is experiencing some herxing, so we know it is working. The herxing is a lot shorter lived (2days) than the herxing from abx. Although, we were at a pretty good place when we started herbals, after being on combo abx for 2 years. Our LLMD is quite happy that we are continuing her treatment herbally, but she is leaving the protocols pretty much up to me. She is not really informed about herbal treatment other than the Byron White series. Buhner has an associate (Julie) that does phone/e-mail consults. I actually have my name on her waiting list at the moment. The book mentioned above is a good one: Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma as is his older one: Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections Both books are available on his website. Another practitioner that uses similar herbal supplementation to treat lyme/coinfections is Greg Lee of the TwoFrogsHealing Center. He also has a good informative site: GoodByeLyme.com Great information in the drawdown "free articles" section.

When DD11 was initially rx penicillin for strep - she had a horrible sore throat, but at that time I had no idea that all the other symptoms she was suffering from were infection related - she improved significantly after about 3 days and remained that way until 2 days after the prescription had finished. All symptoms returned. Sore throat came back and I was given a second round to take only if the second swab was positive. It returned negative, but I gave the penicillin anyway . Again her symptoms declined, but began returning before the second round had ended. Only combination abx treatment worked for us. As mentioned by others above, please find some help with a specialist. Last fall Elizabeth Wray was removed from the custody of her parents (who had been getting her treatment for PANDAS-related anorexia) by BCH to be treated the way the hospital saw fit. I have heard no updates about her condition. The mainstream will stop at nothing to prove PANDAS/PANS doesn't exist.

Check out the Tourette's forum. I think Chemar has mentioned that steroids can exacerbate ticcing.

DD11 was taking A-Bart and A-L while she was on abx, as well as the part Buhner protocol. She was at 30 drops of each 2x daily before we weaned abx. For a while there we weren't going to see the LLMD every 4 weeks, and ran out of Byron White. The LLMD's assistant couldn't manage to get it in the mail with proper postage, so I ended up driving down, just to get the A-Bart/A-L. At that point DD had been off A-L/A-Bart for 2 weeks. When I reintroduced it at 10 drops 2x daily, we had a herx the next day that went away after 2 days. I can't believe that after 3 months of high dose BW, she is still herxing on it. Our LLMD works pretty closely with Dr J. I think she visits him a few times a year, anyway. She really wants to try and treat with herbals alone - thinks this is possible. I told her I would be her first patient after we fix up DD11, but you know, I think I've fixed myself on the same protocol as DD . I love self-experimentation. I learn a lot from it. Start charting. You will see if she is having new baselines.

You've got it there! I feel like PTSD is setting in every time there is a little herx to the increase in herbal protocols. But as I faithfully chart (excel stacked bar chart) her symptoms daily, it's becoming more and more obvious that that is what's happening; herxing and not relapse. She caught the stomach flu from her brother a month ago, and other than a headache, nausea and one barf (in class - what mortification!), she was fine. We tried removing all but one abx and Byron White herbals, 6 months into treatment. 3 months later she was not just relapsing a little, but fully back to square one. Which makes me think we might have a (tenuous???) handle on it this time. She is at, and remaining at, an all time low in both PANS and bartonella symptoms. And except for herxing, the basline appears to be stable.

As I recall, several parents have mentioned vaccinations being the obvious tigger for their children's PANS reactions. Just my idea, but I think underlying infections react to the vaccination in some way, producing the brain inflammation. Our DD lost speech and fine motor/spatial ability with her first MMR. Makes you wonder about the causes of autism, doesn't it? I would try to get in with one of the PANDAS specialists mentioned on this board: Dr T, Dr B, Dr L. Or as suggested earlier, try getting into the NIMH trial. I don't think anyone here has found lasting symptom resolution with short-term abx treatment.

Just the first thought that came to mind, if your daughter is being treated for lyme/bartonella. Is she being treated for babesia? One of the more pronounced symptoms being "air hunger". I have heard mentioned that as you treat one co-infection, symptoms of others might begin showing up.

It's all about getting the immune system back and running isn't it? Thanks for the update. Glad things are going well.

Wow! Glad to hear your good news! Our DD has been off abx for lyme/bart since the middle of April, but we are continuing herbal protocols. We are doing the full Buhner bartonella protocol for at least 9 months. I am making an appointment for a consultation with his associate. Right now the protocol looks like this: Astragalus 3x weekly, sida actua tincture 1/4 tsp 3x daily, japanese knotweed tincture 1/4 tsp 3x daily, japanese knotweed powdered herb 1/2 tsp daily as tea, houttuynia powdered herb 1.5 tsp daily as tea, milk thistle and hawthorne daily, as well as allicin 3mg 3x daily, bolouke and Interfase daily (for biofilm). Also daily as per our LLMD, taurine, phosphatidyl choline, magnesium taurate and calcium citrate, liposomal glutathione 2x daily, sublingual methyl B12 2x daily, P-5-P 3x weekly, L-methylfolate 3x weekly, NAC and l-glutamine 3x weekly, curcumin 3x weekly, Vit C daily. We are continuing with multiple probiotics and eat fermented vegetables. We pretty much follow the Wahls diet. I have also ordered a near infrared sauna to address the remaining infection with fever response. According to Stephen Buhner (his books are wonderful, by the way) you don't ever eradicate lyme - there are too many hiding places. Just bring it to a place where the immune system can manage on it's own. If you are asymptomatic, the immune system is probably handling it. If symptoms creep in, it's time to address the infection again. DD's symptoms are down to practically nothing, with just a tiny bit of ticcing in the evenings. She is so happy and helpful, and could dance and run all day if you let her. Her executive function is wonderful and I no long have to remind her to do any part of her morning or evening routines. She has been having herxes with the ramping of Buhner's protocol. 5 days ago I brought her up to 1/2 (1.5 tsp) the suggested adult dose of houttuynia (she had been on full dosages of the other herbs while on the last part of her abx protocol). Being she weights 76 lbs, the LLMD thought this would be good. She had a big herx 2 days later. Shin pain, fatigue, headache, moodiness, increased ticcing. She was a wreck. Not being used to these reactions (they haven't been this bad since starting to pulse tindamax), my first thought was RELAPSE, but 2 days later and several epsom salt baths later she is back to baseline. I know she hasn't kicked bartonella yet as her titers are still positive. We will not be discontinuing herbal procols for some time to come. Buhner actually suggests that some people may need to remain on low dosages indefinately. Check out his website. He is very free with his knowledge and sells nothing other than his books on the subject.

Yes, hang in there. Keep researching and you will be even more confident of your questions when you finally get to the doctor. Chart, chart, chart. Daily charting with an Excel stacked bar chart has worked well for us. Symptoms (y-axis) vs day (x-axis) with notations on protocol changes/illnesses. Makes it so easy to observe herx reactions etc. Makes it easy for the doctor as well.