rowingmom

DH and I ended up in marriage counseling. DH was trying to control and side-track my efforts to help our daughter. Being a PhD biologist he felt that our well educated, highly regarded PCP was more knowledgeable about our daughter's problems than I was, and I can understand why he felt this way. But I couldn't accept the ritalin/clonipin/good spanking prescriptions, and certainly didn't understand how they would help in the long run. I knew there was some biological reason for DD's behaviour/symptoms, especially the more physical ones - IBS, deep bone pain, headache, dizziness, tingling extremities, anxiety attacks and palpitations etc. No doctor was going to tell me that these had a psychological basis. When the ped psych suggested PANDAS, it gave me a leg to stand on, but still no treatment options in Canada. Unfortunately she knew little about the disorder and in the end could only rx ritalin and clonipin (at least she didn't add spanking) as well. There were huge fights over my researching lyme/coinfections (it can't be lyme - it's January!) and the fact that I intended to go out-of-country to get help. It was really and truely horrible. Even more horrible than PANS. I found us a councilor. The councilor helped us to see that neither has the right to control the other. DH was pretty taken aback at this revelation, but since then has left me alone. He wouldn't involve himself in appointments or anything to do with our LLMD. I tried discussing things with him several times, but learned quickly that this lead nowhere. At least he didn't refuse me the funds to do what I thought was right. Life wasn't fun for a long time, and we no longer share the intimate portions of our lives. I have told DH that at any time he is welcome to leave if he feels he needs to, but that I will not be leaving our children. Our marriage is essentially over, but we are still partners in raising our children. The hardest thing for me was to realize was that I no longer have a life partner, someone that I can count on to take my back. That whatever happens will only happen because of the effort and time I put into it. That I can trust no one else to help; not doctors, not parents, not friends, not family. But in this game DD's life is ultimately more important than any of this. More important than my needing to be validated by anyone. We each do our own thing. I cycle and row/weight train. DH is involved with DS's sports and I do not begrudge him any time he wants for hunting, fishing, sports etc. We take the kids to their activities and support them wholeheartedly as a family. We no longer argue or discuss matters that could lead to argument. I deal with everything pertaining to DD myself, and I make decisions about myself for myself. DH and I have come to an acceptance of this new way of life, but whether or not it will last after the children leave home I don't know. Only now, 3 years later, is DH starting to acknowledge the obvious improvements in DD's health and behaviour. He is even on board with DD's continuing treatment with alternative herbal protocols, something that he previously would have dismissed out of hand.

I don't think a couple of extra days on abx would make the difference one way or another. Most children here are on extended courses of them. We never stopped abx to do blood tests (CBC, CMP etc), but for some lyme tests there is a requirement to be abx-free for some period of time.

I think this must be why DD's school put her in a weighted vest from K-2. The OT said it would have a calming effect. Good for your son to figure it out himself.

I think I made that post. Medical definition: http://www.merriam-webster.com/medical/jarisch-herxheimer%20reaction Stephen Buhner suggests that the herxheimer inflammation reaction is not associated only with spirochete infection, but also with other gram negative infections as well. It is not known to be associated with gram positive bacterial infection. Inflammation results when endotoxins are released during the die-off of gram negative bacteria (caused either by the immune system or by antibiotic treatment). This inflammation is responsible for many of the symptoms of gram negative bacterial infections. A herx reaction is an increase in symptoms caused by the additional inflammation produced by the endotoxins released during abx treatment. http://www.biostrategics.com/kpmgendo.pdf http://www.ncbi.nlm.nih.gov/pubmed/8477572 http://www.ncbi.nlm.nih.gov/pubmed/6384378 http://medical-dictionary.thefreedictionary.com/endotoxin Herx reactions are not usually that long-lived. You may be dealing with an abx intolerance, or if it is a herx reaction that you are seeing, pehaps you son is having difficulty getting rid of the toxins that are being produced. This is where detoxing and proper function of the methylation cycle come into play.

A simple lyme test will not indicate the presence/absence of coinfections: bartonella, babesia, ehrlichia, mycoplasma etc. Bartonella is especially implicated in the development of psychiatric symptoms. The absence of lyme does not infer the absence of coinfections. http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf http://www.schallermd.com/articles/bartonella-and-psychiatry.html

Why have you not throughly investigated lyme and coinfections? http://www.drjaller.com/ "Some of my patients have: fibromyalgia, chronic fatigue, headaches, multi-system disease, and metabolic disorders including obesity, neuro-endocrine disorders such as POTS, immunological disorders and psychological issues." These are all disorders caused by lyme and coinfections, especially bartonella and babesia. Not just lyme alone. Best of luck with Dr N, but often the mainstream doesn't understand that these issues are frequently caused by infection which first needs to be properly identified and then treated.

DD had fevers for months, but they weren't continuous. They did happen every evening at bedtime though, like clock-work.

Good luck with your next appointment. Please keep the possibility of an infection-based autoimmune/inflammatory brain reaction in mind. Please also remember that children with PANS/PANDAS can react negatively to normal doses of psych medications.

Although DD doesn't deal with trich, I have read a couple of forum postings (on a different lyme forum) indicating that increasing glutathione levels can help. We do use liposomal glutathione (EssentialNutraceuticals EssentialPro softgels) 250 mg BID (2x daily) and have not had any negative reactions to it. This might be an option. Another might be NAC (n-acety-l-cysteine), but this can cause problems if your daughter has a CBS mutation or is sensitive to sulphur. NAC will help the body naturally produce more glutathione.

If your pediatrician refuses to acknowledge PANDAS/PANS please seek the help of one of the specialists mentioned here. Don't waste time trying convince a doctor with a closed mind. Some of these doctors will acknowledge the possibility of PANDAS/PANS, but won't treat beyond the recommendations of the IDSA (Infectious Disease Society of America). Often our children require longer and more specialized treatment. Many of the PANDAS specialists are just that; specializing in autoimmune reactions produced by strep infections. If you get an inkling that your son is perhaps struggling with infections other than strep please consult with an ILADS (International Lyme and Associated Diseases Society) trained LLMD (Lyme Literate Medical Doctor). They have experience with many vector-borne diseases (lyme, bartonella, babesia, ehrlichia, mycoplasma, RMSF, anaplasma) and realize that these infections occurr more frequently than the IDSA will admit. LLMDs will often diagnose clinically because the presence of any one of these bacteria, especially bartonella or lyme, can be very immune suppressive. Most testing for bacterial infections is dependant on antibody reaction and is therefore not a good indicator of presence/absence if the immune system is not functioning properly. Our daughter's autoimmune reactions (please check my signature line) were the result of a bartonella infection. PANS is not always caused by streptococcal infection. Welcome to the forum. You are in a good place.

Our daughter's PANS reactions were the result of her bartonella infection. If you are finding that strep is not the issue, perhaps another infection is. In our case the underlying bartonella infection increased her PANS reactions to other viral/bacterial infections as well, and she would react not only with her own infections, but to those of others as well, even if she was not showing outward signs of infection. For some reason our children's immune systems are not functioning properly. The 15 month MMR vaccine resulted in a loss of fine motor ability and oral apraxia for DD, which she has overcame with intensive speech therapy and OT/PT . I am hesitant to further vaccinate in her situation.

Trinitiybella, they do look similar in the pictures. The first website was pictures of bartonella marks, the second of pregnancy stretch marks. What I mentioned was that stretch marks in areas of the body that haven't stretched significantly (like a pregnant belly does while expanding quickly) may be indicative of bartonella.

I won't kid you. It is a long haul. Many different abx combos and protocols. We tried to wean twice during the 2 years DD was in treatment and relapsed both times. It wasn't until our LLMD suggested treating for babesia along with bartonella that DD found real healing. DD had tested negative for babesia, but perhaps the malaria abx addressed some other protozoan infection that we hadn't tested for. We saw real improvements after about 6 months, but weren't able to hold onto them until 2 years worth of abx treatment, some of which was trial and error on the part of the LLMD. Pay attention to detox/MTHFR and inflammation. Proper dosing of Japanese knotweed was very helpful with herxing and just general healing for DD. Probiotics are essential. Having a visual chart of symptoms vs protocol is EXTREMELY helpful for both yourself and the doctors.

Here are some good examples: http://www.lymediseaseassociation.org/index.php/resources/medical-photos/category/27-bartonella Normal "stretch marks" can be found in areas that have stretched significantly - ie, expanding belly or thighs of someone who has put on large amounts of weight or girth through pregnancy or weight gain. I wouldn't think having stretch marks on the upper back, for example, would be usual. And I don't think they would be normally found in chidren. Bartonella stretch marks are usually a red - dark red colour and look like blood is trapped under the skin. Normal stretch marks resolve to a silver colour, while bartonella stretch marks just come and go. Here are some pregnancy stretch marks for comparison: http://pregnancy.about.com/od/stretchmarks/ig/Stretch-Marks-Photo-Gallery/ The main consideration would probably be, has the area of skin stretched enough to produce the tissue damage you are observing, or are the marks in an atypical area?

It is wonderful to see your child as he/she should be. Pain free, happy. It just makes everything you have gone through so worth it. Yay!

I agree, a classic symptom of bartonella. Although DD has never had them, she did test positive for bartonella hensalae. Headaches can also be a symptom. I think people need to stop focusing so much on lyme results and concentrate on the coinfections (babesia, bartonella, mycoplasma, ehrlichia, RMSF etc). These are the bacteria that are causing the real problems, JMHO. Glad you're seeing a LLMD.

Your son's eye movement seems more uncontrolled than the Tourette's-like ticcing that DD deals with. Her blinking and eye rolling seem to be somewhat controlled in that she is able to withhold them for some period of time before her premonitory sensation forces her to do the movement.

LLM - you have such a way with the written word .

I wouldn't just test for lyme, I would also test for coinfections. If your daughter's lyme results are negative, that doesn't mean she can't have the other coinfections. I think the coinfections play a greater role in PANS than does lyme itself.

JMHO - doxy alone is not going to do anything for bartonella. DD had an allergic reaction to bactrim, which I originally put down to a herx, but it kept escalating to urticaria and then I twigged. The LLMD switched her to biaxin and rifampin which produced a great improvement (well, after the initial herx).

Yes, wait until she is feeling better and start one at a time. Did you treat bartonella previously and then test negative? Is she being treated by a LLMD? I think they usually add rifampin to that mix. Chart, chart, chart to look for herxes and resolution. If you would like a copy of DDs Excel chart as a template, just ask.

Our daughter was highly positive for bartonella and has never had a stretch mark. If you think bartonella is involved, please contact a LLMD. The PANDAS specialists are just that - specializing in strep-related autoimmune responses. The LLMDs are aware of the autoimmune-type reactions caused by other infectious organisms.

Just my thoughts: If your child has an underlying infection that is actively producing antibodies, IVIG will dilute them, the result being a decrease in symptoms. The infection will continue producing antibodies and, as the effects of the IVIG wear off, will become more concentrated. So you may have been seeing a bit of both a decrease in IVIG concentration in the blood, and an increase of infection-based antibodies, producing symptoms. Die-off toxins often produce symptoms that are worse than those observed before treatment, but as these endotoxins are processed and removed from the body (assuming methylation is working properly), symptoms should wane. http://en.wikipedia.org/wiki/Endotoxin Humans are able to produce antibodies against endotoxins after exposure, but these are, in general, directed at the polysaccharide chain and can only protect against the immunoactivation from serotype-specific bacteria and/or their specific endotoxin. Injection of a small amount of endotoxin in human volunteers has been shown to produce fever, a decrease in blood pressure, and activation of inflammation and coagulation. Endotoxins are in large part responsible for the dramatic clinical manifestations of infections with pathogenic Gram-negative bacteria, such as Neisseria meningitidis, the pathogens that causes meningococcal disease, including meningococcemia, Waterhouse-Friderichsen syndrome, and meningitis. So I guess that if you are dealing with gram negative bacteria (ie. lyme/bartonella), you could be increasing the number of antibodies to the infection because of the endotoxins released with antibiotic use. This would further decrease the concentration of IVIG remaining in his system. Strep is a gram positive bacteria. A head's up - rifampin should not be used alone. There is an increased risk of resistance when it is used as monotherapy.

I was going to say Japanese knotweed, but that has to be discontinued before surgery as well.

Headaches are also common with bartonella and babesia infections.