rowingmom

If this is the case you will have to find a PANDAS specialist or ILADS LLMD for long term abx treatment. If your son does not test positive for a strep infection I would suggest testing for other infections: lyme, bartonella, viruses.

Aren't we all ! If it works, bring it on!

Often if there are gram negative bacteria involved (ie. lyme, bartonella) bacterial die-off will release endotoxins that can create a herxheimer reaction. This toxin buildup results in an increase of existing symptoms, with perhaps some new ones added in. This is frequently seen in the treatment of lyme (a gram negative spirochete, like syphilis). The time frame you mention is similar to those seen by many of us treating lyme/coinfections. When a new abx protocol is begun, bacteria begin dying off. After 1 to several days the body is unable to eliminate the resulting endotoxins at a rate faster than the bacteria are releasing them as they die, and a herx reaction is the result. If the abx dosage is decreased (or in our case pulsed) the body - with the help of various detox methods - is able to deal with the die-off properly and symptoms resolve. If an increase in symptoms is consistantly observed with changes in abx protocols, I would also suggest testing for lyme/coinfections.

We used biaxin (instead of bactrim which caused an allergic reaction) and rifampin for 1 year. Then added mino, azith, malarone, palquinel and pulsed tindamax. All for Igenex IND lyme and positive bartonella. All other co-infection tests were negative.

I always associate increased ticcing with die-off toxin buildup (herxing). I would notice an increase with each protocol change, and it would then slowly go away as DD's body detoxed. When we started tindamax nothing I could do could detox her enough to resolve the ticcing, which just ramped and ramped. We ended up having to pulse tindamax (3 days on, 4 days off), giving her body some time to deal with the die-off. Only then did they resolve. During our last combo abx protocol DD was pulsing tindamax, minocycline, malarone, azithromycin and plaquinel. The first round of 3 days produced a significant herx which had dissapated by the end of the 4 days off. The succeeding rounds produced smaller and smaller herxes, and by the time we had gotten to the point where she was no longer herxing at the start of a round, our LLMD suggested weaning the abx. We have been doing pretty well since then (April 15).

I agree. Now you know one piece of the puzzle! You are getting there. The pieces will fall together if you keep at it. Just wondering about your lyme test. DD was IND for kDa 39 which is lyme-specific. Because it showed up at all, the LLMD diagnosed lyme. The test otherwise stated her lyme result was CDC and Igenex negative. Are any other lyme-specific bands positive? Did you test from any of the co-infections?

51 with an 11 yo PANS girl. Japanese knotweed and bioidentical progesterone all the way !

So, yes, in reality, we have not been treating lyme long enough to be done. But I am only seeing things worsen. I love this kid. I know that she has a soft heart in there. She was most soft-hearted kid when she was little. But I can't seem to get her out of this hole or even get on the right path. And I know that my husband is quickly losing patience with how expensive it is to treat this...not to mention that we are all positive for Lyme (including him) and 4 of 6 of us for Bartonella, all of us for Babesia. Thank you for listening. I know this was a long post. I am exhausted, you all are the only ones who get it. Many Blessings I agree with LLM about bactrim. DD had a huge herx with bactrim which went on for about 3 weeks, when she then developed an allergic reaction to it. We used biaxin from that point onward. If your whole family is dealing with lyme and multiple coinfections I (not being a doctor) would suggest not going the IVIG/steroid taper route before the high bacterial loads have been properly addressed. For us this meant long-term multiple abx protocols. Steroids are contraindicated with bacterial infection, and improvement from IVIG may be short-lived because the body will keep producing antibodies to the still-existing infections. Our DD flared with every strep/viral/other bacterial infection before her lyme/co treatment began. She no longer has these reactions. I really think, in our case, that the immune suppressing characteristics of both the lyme and bartonella bacteria were a major cause for these reactions.

I'm not sure if we have delt with mycoplasma or not, but according to Stephen Buhner, there is a high probability that most of us have been exposed to at least some of the species. His book "Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma" is very informative and I would suggest that you read it. According to Buhner these bacteria act as parasites and scavenge nutrients from the body, resulting in various nutrient deficiencies depending on species - a good reason to use a nutrient dense diet. All of his supplements can be used along with abx or other treatments, and DD has been using them from the get go.

If you know bartonella is the problem, can your doctors change abx combinations to address the same infection? Perhaps the bactrim (a sulfa drug) is causing problems. Three weeks after DD11 started bactrim she had an allergic reaction to it, with hives, facial swelling etc. For the 3 weeks before the allergic reaction she had some of her worst herxing ever - we actually had to put her in a wheelchair. This was at the beginning of her treatment, however, and I had always assumed the large herx was due to the first big die-off. Just thinking about it now, perhaps her system was just incapable of handling bactrim. We switched to biaxin and added rifampin, and stayed on this combo for a year before variously adding plaquinel, azith, mino, malarone and pulsed tindamax for another year - all the while using A-Bart, A-L, japanese knotweed for brain/systemic inflammation and lots and lots of probiotics. While she was on bactrim her sleep did not improve. The only thing that helped at that point was the benedryl we gave her for the allergic reaction. We kept that up for 2 weeks (I didn't want to give it up, she was sleeping so well). Melatonin eventually worked for us and we used it for 2 years. We discontinued it this summer.

DD had all these symptoms, resulting from a lyme/bartonella infection. Her neck pain was at the base of her skull.

This is the one I was referring to: Just the placement of his feet in the clips of him walking, the way he has to adjust before he can move on, made me think of the movements you mentioned when referring to your son. The contemplation and readjustment before moving - just brought Sammy's video clip to mind. These movements do not look like the Tourette's-like ticcing we are used to. The ticcing we see are quick movements, usually a single movement, rarely a combination, with premonitory sensations, usually done with no thinking. I think there is really no contemplation involved. DD says she gets a tingling sensation in an area of her body (ie her mouth) which won't go away without doing the tic (stretching her mouth wide). After she does the tic, the sensation resolves, until it happens all over again. DD's ticcs are usually the same movement, over and over, with varying lengths of time in between, lasting for days or weeks and then on to another one which would last days or weeks. ie, facial grimace, or mouth stretch, or eye rolling, or shoulder shrugging, or arm pumping, or neck jerking. We had some vocals as well.

Before treatment DD used to seek motor sensory stimulation constantly. She was always hanging upside down, off chairs, off swings, spinning in circles etc. Life just seemed better moving in circles or upside down. She has never been coordinated enough to do cartwheels, but I'm sure those would have been good too. Even as a baby she would do as many of these things as she was capable of. I don't think they were all tics, although the summer before she started abx she did develop a spinning tic where she would have to spin around every so often while walking anywhere. For I while I just thought she was happy with life, but after a bit it became obvious that she had to do it. Not sure if it was a complusion though. I didn't know at the time about the premonitory sensations that go along with ticcing and didn't think to ask her about it.

We did not have these, but they sound very similar to the movements recorded in the videos of Sammy Maloney.

I would suggest testing for lyme and all co-infections (even if lyme result is negative) with a LLMD. DD's ticcing started approx. 1 month after an insect bite which left a 1 in diameter red rash with bright red border. There was no EM rash. We never found the insect, and assumed the bite to be a spider bite. Her ticcing was caused by bartonella.

I remember having a Parasitology prof at university who had a hate on for felines as well .

DD still uses ResearchedNutritionals Transfer Factor daily. For a while there she was taking the ResearchedNutritionals Lyme Plus as well.

Yes, that's why you're not supposed to change the kitty litter if you are pregnant.

2 years ago - penicillin VK worked very well at reducing my daughter's symptoms (bartonella pain, ticcing, raging, PANDAS) the first time she was diagnosed with strep. All symptoms cleared up for the ten days she was taking it. She was a new child. However, all symptoms (including sore throat) returned after the abx were discontinued. I managed to get another prescription in case the second swab was positive (which it wasn't), and gave it to her anyway. Again all symptoms disappeared, however this time they returned while she was still being dosed. Only multiple combination abx protocols were successful for us.

It's hard not being able to talk to anyone (doctors, family, friends) about the causes/treatments for our children's reactions. Even DH shuts down if I say more than one sentence, but at least now he is a believer and doesn't think I'm totally nuts. He would rather watch/play golf, football, hockey etc., and he can, so he does. I can't be too upset though because he's the one who has the well paying job . A couple of weeks ago I was talking to my cousin (an MD) and his wife. She mentioned that DD appeared to be doing so well this year (as opposed to the continuous ticcing and emotional lability of last summer). I said, Oh yes, she has just finished two years of bartonella treatment and is using an herbal protocol now - they both turned away and started talking to others. People, especially those in the medical field, don't want to hear it, they are in denial that these types of infections are even possible. You'd think there would be a slight bit of interest. This seriously makes me second-guess myself. What if I am nuts? It is so hard to be completely responsible for curing our own kids. Every sniffle, tic, bit of moodiness sends me for a loop. Even after a good 4 months, I'm still waiting for the other shoe to drop.

LLM is right. Our LLMD rxed methylfolate (1000 mcg), methylB12 (2000 mcg) and P-5-P (30 mg) daily. We do use the methylB12 (along with liposomal glutathione) daily, but the other methyl B's only Mon, Wed, Fri. While you are drawing blood for testing, please consider the lyme co-infections (bartonella, mycoplasma, babesia, ehrlichia) as well. Our daughter's PANS/PANDAS symptoms were caused by bartonella. According to Stephen Buhner, bartonella psych symptoms can often be diagnosed as bi-polar or schizophrenia.

I have been wondering about the toxoplasma thing myself because 1) DD has bartonella and 2) she has a strange and horrible affinity for cats.

Bartonella was DD's primary infection and fatigue was a problem for her also. CBC/CMP results were always within normal ranges. Multiple combination abx treatment for bartonella, as well as addressing methylation and inflammation have all helped immensely. Monotherapy abx treatment didn't work for us. If we had assumed that co-infections were not involved because of DD's negative Igenex WB result, I'm not sure where we would be now.

So your children haven't seen Dr. Bhakta yet? She should throughly investigate coinfections for you. Although DD's lyme results from Igenex were IND, and therefore considered positive by our LLMD, it was bartonella that seemed to be causing her psychriatric/PANS issues. Our daughter is also believed to have congenital infections. Antibiotic treatment for bartonella caused herx reactions of both her bartonella pain and PANS/psychological symptoms which resolved over time. She was treated for 2 years with multiple combinations of abx and has now been weaned from them for 4 months with no sign of relapse, only continued healing (knock on wood). We continue with a Buhner herbal protocol to address remaining inflammation and any remaining infection. I wish we could dispose of our smart meter as easily as you did - Ontario is very insistant that you follow all rules regarding updating of meters. No analogue meters allowed. I too have discontinued DECT phones and computer wireless.

Most ILADS LLMDs realize that psychiatric disorders and the other symptoms you report can be caused by bacterial and/or viral infection and the resulting inflammation. They will often treat on clinical symptoms alone, but will do a lot of testing as well. They are not hesitant to use antibiotic treatment.