rowingmom

Just googling around and I think I found that antihistamines are used by people with POTS and mast cell diseases to help regulate mast cell production of histamine (allergic response) and decrease inflammation. It helps regulate mast cell production in mucous membranes (of which the gut has plenty). Does it help downregulate mast cell production in an inflammed brain? IDK. This link about mast cell researcher Dr Thdoharides has been posted before, but I will link again: http://www.mastcellmaster.com/ There was some earlier discussion on the lyme board about luteolin/rutin/quercetin also being mast cell stabalizers. Vancomycin is used to treat C. diff cystic forms in the gut. It is a very strong antibiotic also used by some LLMDs to kill the cyst form of lyme. Xifaxan is a antibiotic related to rifampin. Lots of probiotics needed with these abx. Hopefully your doctor will check for C diff infection before starting vancomycin. Here is a link to a forum using different antihistamines to address POTS/mast cell disregulation and some discussion on the results: http://forums.dinet.org/index.php?/topic/17315-when-to-take-clariton-and-zantac/

Buhner has a new book out - Herbal antibiotics: natural alternatives for treating dug-resistant bacteria. Lots of info on treating bacteria other than lyme/co. Interesting because we really don't know what else we are up against. Last night I found: "Most plants contain both antibiotic substances and a potent synergist, quite often one or more efflux inhibbitors. Goldenseal, which contains berberine, is an example. Berberine, a strong antibacterial, is very active against a number of resistant organisms. It is considerably more active, however, in the presence of another constituent in goldenseal, ....5-MHC, which is a multidrug efflux pump inhibitor. It reduces or eliminates MRSA's ability to eject antibiotic substances that might harm it from inside its cellular membrane. 5-MHC has no known function other than to do exactly this, and it is one of the reasons goldenseal is so effective in the treatment of resistant infections..." I came across a blog the other day linked to one of the BCH facebook PANDAS respondants. This mother has a child with autism who has recently found out from Dr T that they are dealing with PANDAS as well. After several months of Abx, their doctor decided that they needed to go the herbal route (I think they tried homeopathy as well) and she has been treating with goldenseal, OoO, alimax, neem and a couple of other things. I'm not sure who their doctor is, but the mother gives the dosages and finds herself shifting back and forth from treating bacterial infections and yeast problems. Apparently they are having some luck resolving ticcing issues. http://www.regardingcaroline.com/tightrope.html I know I will eventually have to head down this path (treatment other than Abx) myself because we are using pretty much every last cent treating DD11 in the US. We can not keep this up for much longer - we are dipping into retirement funds, but I am lothe to quit Abx as she does so well on them. This s**t I would wish on no one, not even my sister who tells me to "take her off Abx, give her all the gluten and casein she wants and just let her be a kid". She has no children.

Thanks for the link. I need to read through a couple of more times, but this struck a cord: "Interferon treatment for Hepatitis C and other conditions is a good model for demonstrating inflammation mediated mental symptoms. Symptoms seen with interferon treatment include cognitive impairments, depression, anxiety, mania, irritability, impulsiveness, hostility, relapse of substance abuse and lassitude [19,20]." Funny thing is that one of the herbs that Stephen Buhner suggests for boosting the immune system against first time lyme infection in an endemic area is astragalus. He mentions in his book Healing Lyme that it boosts the body's production of interferon. He also cautions not to take astragalus if you are currently dealing with a lyme infection as it will increase your Th1 response, increasing cytokines and causing more fatigue, muscle pain and brain fog. On his blog a couple of people have written in asking if they could start astragalus while they are in lyme remission. He said, yes, that if you had not experienced symptoms for some time that it was OK to give it a try. As I was feeling pretty well this spring I thought I would try boosting my immune system with astragalus, and that if I did have low level lyme astragalus might help to get rid of it. The first 3 days of 3 capsules per day were wonderful, thinking was very clear. I was literally doing cartwheels in the back yard (hope the neighbours weren't looking), but after that I started developing fatigue and flu-like muscle soreness (I ended up quitting the herb after about a week) that has only now really resolved, and that was after taking aleve (anti-inflammatory) every other day all summer long. I also experienced over-all body soreness after bicycle riding (25 miles @ 20mph) which is weird for me, I usually only have soreness in my quads - exercise boosts the immune system as well and this seemed to be sending me over the edge into overall inflammation. The anti-inflammatories were not helping my cartilage renewal and for most of the summer my knees felt weak as well. I had a feeling that this was what was going on because of astragalus. The same thing happened when I experimented on myself with Virapress, the bovine immunoglobulin supplement, but the symptoms did not last for that long. I am just an experiment of N=1.

Interesting - DD11 tears her finger cuticles and then squeezes them until the blood wells out. She tears her toenails as well and there is a fair amout of nose picking (especially during a tic flare), the lips seem to be fine. I have always thought it was a bored kid thing. I have always noticed when her tic symptoms flare, but have noticed little OCD in her behaviour - other than drawing the same stick figure girl over and over and over (this type of drawing has decreased a lot with treatment). I will keep and eye out for this.

I was thinking about brain inflammation yesterday morning and ended up ordering some Lutimax Pediatric which contains luteolin and rutin (thanks for the links to Dr Theoharides work LLM - they got me thinking). It was a toss-up between that and Neuroprotek (which contains luteolin, rutin and quercetin), but reading on a couple of autism boards that quercetin was causing problems in some children, I went with Lutimax. Our LLMD has DD11 on DaVinci Enz-Flame which has a fair amount of quercetin and rutin, but not much luteolin (along with enzymes and curcumin). Can't really tell if it is making a difference.

I am so sorry this has happened to your poor dear son... You were so resourceful to find a doctor in Ontario that helped you for as long as he did, but that's not of much help now. I would second the stuffed sock/hat pin idea. Our family doctor just poo-pooed the very idea of lyme and stated that DD11's Igenex results were bogus - I did not waste my time trying to educate him. Our ped psychologist was the one that suggested PANDAS may be our problem (first time I had heard of PANDAS) but said that DD11 would not qualify for IVIG because she had to be quite incapacitated. It sounds as if your son may qualify if you can find a psych/ped that agrees with the PANDAS Dx and can Rx IVIG. The trouble is, even if you do find a ped that agrees with the previous Dxs, they will still be constrained to short term abx treatment. There is an alternative practitioner in Niagara Falls who studied ART under Klinghardt. He claims to treat lyme with positive results, although I haven't contacted him yet - I want to see what our LLMD can do for us in the upcoming year. Perhaps he might know of someone in your area that could help. I have seen no mention on his website of PANS.

Thanks, I will be listening.

I'm not sure a lot of LLMDs think kids with bart need to be on psychiatric drugs, but I am sure a lot of main-streams doctors do. Our family doctor and pediatric psychologist both wanted DD11 on them before we found a LLMD and started treating the cause and not just the symptoms.

Detox, perhaps ask the Dr about starting at a lower dosage and ramping slowly. We just pushed through it, although DD11 did not have the severe neuro herx your daughter seems to be having. We have not used any psych meds.

Our LLMD gave us this a few months ago. It's called Virapress and is a liquid that you dispense with a dropper ($90 a bottle). Tastes like viscous salt water. As a good experimenter I always try these things on myself first. The instructions on the bottle say 1ml 2x daily. The LLMD said to give DD11 7 drops twice a day, I tried 2 drops 2x a day on myself. Two hours after the second dose I developed quite severe flu-like symptoms (muscle pain, fatigue) which lasted the day and then started to resolve. The same thing happened on the second and third days - It appeared to be causing an inflammation-type reaction. Because DD11 was born with congenital lyme symptoms, I am not willing to give DD11 something that caused so much inflammation in myself. I ended up having to take some meloxicam (anti-inflammatory) to resolve the pain. Needless to say, it's still in the refridgerator. DD11 just read this and said, "herx reaction?" IDK

We have been treating DD11 for 1 yr, 5 months. We have run 2 rounds of rifampin/biaxin, pulsed plaquinel and tindamax, and are now using azith/mino/malarone. There has been a rapid reduction of symptoms with this last combo - a lot more rapid than with rifampin/biaxin, only 2 weeks to get to a pretty good baseline, whereas rifampin/biaxin took a good month, but she is still having long-bone pain with exertion. Motor tics are there but hardly noticable and other PANS symptoms are good. We have never seen stretch marks. Been wondering myself if this will ever end.

Good for you for wanting to help your boyfriend, he is lucky indeed! My DD11 (11 year old dear daughter) has PANS - like PANDAS, only her symptoms are caused by an autoimmune reaction to a different bacteria (not strep in her case, but lyme), although strep will exacerbate her symptoms as well. DD11 understands that motor and vocal tics/OCD/easy frustration(sometimes rages)/inability to concentrate/anxiety are some of the symptoms that she gets from her autoimmune reaction to infection. Although she understands this, if she is in exacerbation there is nothing she can do to stop herself from being angry and irritable, unable to do math, from ticcing, or from her decline in writing skills. Her autoimmune reaction to infection causes a physical inflammation of her brain which effects her ability to think and react as she normally would. If I mention that symptoms are showing up and she will say "I know, I know", but can do nothing to help herself. The harder she tries, the more frustrated she seems to get. Only reducing brain inflammation seems to help her. When she is out of a flare her symptoms resolve and it is so nice to see the real child that is sometimes hidden by her reactions to infection. Cognative behaviour therapy has helped her to understand how to react in a socially acceptable manner, but she finds this difficult when she has a viral/bacterial infection or a herxheimer (die-off) reaction to her antibiotics. I guess what I am saying is that there is probably little you can do in the way of helping your boyfriend to control himself during a symptom flare. His doctors will be addressing his PANDAS reaction with antibiotics and anti-inflammatories which should help his brain swelling and allow him to react in a more normal fashion. I think the best thing you can do, and you are a very strong young lady to want do this, is to find out everything you can about PANDAS - read these forums to get an idea of the physical/psychological symptoms and reactions to treatment, read Saving Sammy (the book, the blog, the facebook page, the YouTube TV interviews) and other blog sites on PANDAS. Your boyfriend will need a lot of understanding, but with treatment you should see his true personality come shining through.

We use RenewLife Ultimate Flora (50 billion) and 2x PB8 (14 billion) daily. We alternate additions of AOR ProBiotic3, Mutaflor and InnoVite DDS Plus through the week. Start slowly and ramp up through a few weeks, as there is a possibility of herx because of improper intestinal flora die-off. DD11 has never had a problem with probiotic supplementation.

Azithromycin (Wikipedia): "Azithromycin is used to treat many different infections, including acute otitis media, nonstreptococcal bacterial pharyngitis, gastrointestinal infections such as traveler's diarrhea, respiratory tract infections such as pneumonia, cellulitis, babesiosis, Bartonella infection, chancroid cholera, donovanosis, leptospirosis, Lyme disease, malaria, Mycobacterium avium complex disease, Neisseria meningitis, pelvic inflammatory disease, pertussis, scrub typhus, toxoplasmosis, and salmonellosis.[5] It is used to prevent bacterial endocarditis and some sexually transmitted illnesses post sexual assault.[5] It is also effective against localized dental infections. It has a similar antimicrobial spectrum as erythromycin, but is more effective against certain Gram-negative bacteria, in particular, Haemophilus influenzae.[citation needed] Azithromycin resistance has been described[6] and is endemic in many areas. Long-term use in treating Staphylococcus aureus infections with azithromycin may increase bacterial resistance to this and other macrolide antibiotics.[7] Azithromycin has been shown to be effective against malaria when used in combination with artesunate or quinine; the optimal dose for this is not yet known.[8]"

Our LLMD doesn't talk about detox either. She gave us some homeopathic liver/brain/kidney detox remedies to use but didn't go into detoxing any further. This forum has a wealth of information and I found some other things on my own - lemon juice in water - lemonade (sweetened with stevia), epsom salt baths (if DD11 is flipping out I send her for a bath with her dollies and she is much calmer afterwards). DD11 also takes 1 tsp metamucil (psyllium husk) daily in water to keep her bowels moving.

So glad to hear your daughter is doing better. It is so nice to see the real child behind all the pain and confusion, isn't it? We are using mino at the moment and have never used doxy. I'm sure you have answered this question before, but have you tried melatonin (esp. timed release) or a anti-histamine at bedtime? If you are up typing at 3am you are not getting much sleep either.

DD11 now understands that these are some of the symptoms that she gets from her infection (whatever it may be - lyme/bart/strep/myco). Although she understands this, if she is in exacerbation there is nothing she can do to stop herself from being angry and irritable, unable to do math, from ticcing, from her decline in writing skills, from lying on her back flailing arms and legs in the air talking baby-talk to the mini-schnauzer. I will mention that the symptoms are showing up and she will say "I know, I know", but can do nothing to help herself. The harder she tries, the more frustrated she seems to get. While she is in a flare I spend a lot of time asking questions: teeth brushed? Dressed? Backpack ready? Got socks? Shoes on? What homework do you have? I pretty much have to do her executive functioning for her. If I don't she will spend all of her time dressing and undressing barbies. When she is out of a flare she will say that she knew her symptoms were a problem, but that she was unable change her response/behaviour (other than to take herself out of the situation). This is an OK remedy for anger/frustration but doesn't work for handwriting and math. She just has to settle down and take her time. It often helps if I am sitting near her while she does homework at these times. Not to make comments, but just to be there. When she is out of a flare she is quite capable of doing all of the above mentioned executive functioning herself, with a little more besides - offering to help make dinner, bring the clothes in from the line, putting clothes in the laundry, sitting down and completing homework, all without being asked. She is happy and witty and a very good writer of english compositions.

I have told DD11 that her symptoms are caused by a bacterial (like sore throat, stomach flu) or viral (like chicken pox, cold virus) infection - all things that she has observed in other children. I explained that her body's response to these infections is somewhat different than the responses of others and this causes her symptoms to flare. I reassure her that, like she and her friends have recovered from lots of colds and stomach flues, she will recover from these infections as well, although it may take awhile and some help from the doctor. DD11 is scared of the word "disease" - as in Lyme Disease - so I call it an infection - she knows that infections are treatable, and that that is what we are doing, treating her infection. She does not have problems with contamination OCD.

Try the chowstalker and dessertstalker sites. They have some great paleo recipes. Some may have some cheese or butter, but they are few and far between. Lots of good stuff and yummy looking pictures there.

We got the same runaround from our family doctor (Niagara Ontario area) about DD11's motor/vocal tics, shin pain, cyclical IBS and fatigue. He put it all down to her not wanting to go to school and rx'ed ritalin and anti-seizure meds. Things are no better in Ontario, Canada. I am so frightened of what will happen if I have to take DD to a hospital and I tell them she is on long-term combination abx treatment.

For a couple of years, ages7-9, DD11's teachers kept asking if she should be tested for a UTI because she was asking to be excused from class so frequently. There was a wet bed a couple of times a week during that period as well. Urine specimens were always negative. We have gotten past the EMLA thing, but always do ask for a pediatric needle for blood draws.

Our LLMD was using biaxin/rifampin for lyme/bart. This resolved symptoms well, but after 1 year DD11 still relapses after 3 months whenever either abx is withdrawn - she seems to need the combination. We have seen a big reduction in baseline symptoms with axithromycin/minocycline/malarone for lyme/bart/assumed babesia, but with no die-off reactions, I think we may be treating inflammation more than anything, IDK.

Azithromycin (Wikipedia): "Azithromycin is used to treat many different infections, including acute otitis media, nonstreptococcal bacterial pharyngitis, gastrointestinal infections such as traveler's diarrhea, respiratory tract infections such as pneumonia, cellulitis, babesiosis, Bartonella infection, chancroid cholera, donovanosis, leptospirosis, Lyme disease, malaria, Mycobacterium avium complex disease, Neisseria meningitis, pelvic inflammatory disease, pertussis, scrub typhus, toxoplasmosis, and salmonellosis.[5] It is used to prevent bacterial endocarditis and some sexually transmitted illnesses post sexual assault.[5] It is also effective against localized dental infections. It has a similar antimicrobial spectrum as erythromycin, but is more effective against certain Gram-negative bacteria, in particular, Haemophilus influenzae.[citation needed] Azithromycin resistance has been described[6] and is endemic in many areas. Long-term use in treating Staphylococcus aureus infections with azithromycin may increase bacterial resistance to this and other macrolide antibiotics.[7] Azithromycin has been shown to be effective against malaria when used in combination with artesunate or quinine; the optimal dose for this is not yet known.[8]" Minocycline (Wikipedia): "Minocycline is also used for other skin infections such as MRSA[9] as well as Lyme disease,[10] as the one pill twice daily 100 mg dosage is far easier for patients than the four times a day required with tetracycline or oxytetracycline. Its activity against Lyme disease is enhanced by its superior ability to cross the blood–brain barrier. In various models of neurodegenerative disease, minocycline has demonstrated neurorestorative as well as neuroprotective properties. Neurodegenerative diseases such as Huntington's disease, amyotrophic lateral sclerosis and Parkinson's disease have shown a particularly beneficial response to minocycline in research studies; an antipsychotic benefit has been found in people schizophrenia and minocycline is proposed as a possible addon therapy for some schizophrenics.[33] Current[when?] research is examining the possible neuroprotective and anti-inflammatory effects of minocycline against progression of a group of neurodegenerative disorders including multiple sclerosis (MS), rheumatoid arthritis (RA), amyotrophic lateral sclerosis (ALS), Huntington's disease, and Parkinson's disease.[34][35][36][37]" Although I also found this for minocycline (Wikipedia): "Occasionally minocycline therapy may result in autoimmune disorders such as drug related lupus and auto-immune hepatitis; minocycline induced auto-immune hepatitis when it occurs usually occurs in men who also developed minocycline induced lupus, however, women are the most likely to develop minocycline induced lupus. Significant or complete recovery occurs in most people who develop minocycline induced autoimmune problems within a period of a couple of weeks to a year of cessation of minocycline therapy."

Our LLMD has told me she thinks that lyme/bart is causing the autoimmune PANS reactions my DD11 has. She feels that treating the lyme/bart will address the PANS. It seems to be working so far - DD has been in treatment for almost 1.5 years now and is much better than she was when we started out. Although whenever we remove even one abx from the mix there is a relapse within 3 months. It scares me to think of having to take abx for years. We are some of the fortunate ones in that DD has only a very low level of OCD (drawing the same picture over and over, lining up Barbie dolls for days on end). Her PANS problems mostly involve motor/vocal ticcing (along with the other symptoms of age regressive behaviour, urinary frequency, enurisis, rages, frustration, loss of gross/fine motor control). We are Canadian and are not covered by any insurance so IVIG is definately out for us. I think with this round of abx either the minocycline or azithromycin is improving brain inflammation because DD is slowly improving from her last baseline, but with no herxing. There does not seem to be the die-off reactions we cycled through while pulsing tindamax, or when we started bactrim or biaxin. Glad to hear your daughter is sleeping. Sleep is so important, I don't think a child can heal without sleep.

When DD11 changes abx protocols, we usually see a herx reaction within a few days to a week or so. Her symptoms increase to a point where you think - this is not working, but then over the course of a week to two weeks things even out at a new better level. If I were you I would leave your daughter on the amount of abx that seems to be effective for a month or so. This will allow her symptoms to level out to a new baseline before you change anything else. Just a thought.