rowingmom

I will PM you.

For this reason I have purchased a near-infrared sauna (not far ir). It's been too hot out to try, but we will begin using it this fall. I will report on how it goes for DD and myself. 104 eh? Thanks for the information SF Mom.

Freeze cooked liver/heart and shave it into casseroles. No one will know it's there . They won't notice a little red palm kernel oil either. After reading Buhner's book on the mycoplasma/bartonella coinfections and his comments on the universality of those infections, I truely believe that at the very least. we are all infected with mycoplasma of one species or another. His suggestions that these bacteria act as parasites, scavenging nutrients and leaving us with deficiency symptoms, and Terry Wahls huge improvement in MS/autoimmune symptoms from using a nutrient dense diet really hit home for me. I no longer get excited about mainstream news articles on diet. Careful of that "dietician"! Terry Wahls / real food is something we all need. I think her new book is either out or coming out soon. I'm glad she changed her stance on soy and PUFAs. DD quite loves her usual breakfast of squash, beets, greens and an egg yolk!

DD used it through the winter last year, but it was in combination with a couple other things. She had no problems. Our LLMD discontinued it 7 days before DD made a trip to Disney Land this spring. All of DD's abx protocols have been combinations.

I noticed a similar response to the die-off / detox cycle. Shortly after starting a new herbal or abx protocol that would hopefully properly address her infections, DD would begin ticcing. The higher the dose or stronger the antibiotic, the more ticcing we would see. After some time, usually 3 days to a week or so (with as much detoxing as we could handle), ticcing would start to resolve. Tindamax produced pronounced ticcing for DD. So bad that it wouldn't resolve on a continuous dosing regimen so our LLMD put her on a pulsed protocol, giving her body a chance to recover inbetween pulses (3 days on, 4 days off). We then started to see the herx / detox cycle again. Each successive pulse of abx produced a smaller and smaller herx response, and after several months DD wasn't reacting to tindamax and it was removed from the combination. This was close to the end of her abx treatment in April.

A nutrient dense, evolutionarily appropriate diet can do wonders for helping to heal autoimmune disease. https://www.facebook.com/Dr.Terry.Wahls http://robbwolf.com/blog/

I have taken exemptions for all vaccinations for both my children. PANS and non-PANS.

Stephen Buhner's book Herbal Antibiotics: Natural alternatives for treating drug-resistant bacteria lists several different formulations, depending on the type of strep infection involved (throat, topical necrotizing fasciitis, intestinal, meningitis, glomerulonephritis). Some of the herbs he uses include: cryptolepis, sida actua, alchornea, rhodiola, eleuthero, juniper, echinacea, berberine, isatis, knotweed, astragalus - a lot of things that he uses for the treatment of lyme/bartonella. We used 2 years of multiple, combination abx along with herbals to treat DD's lyme/bartonella infections. Only now are we trying to keep them from relapsing using exclusively herbal protocols. Buhner says that using herbals instead of/along with antibiotic therapy decreases the chance of resistance because herbs contain many different antibacterial substances, not only one or two. Several of the herbs he uses can act as proton pump inhibitors, reducing resistance in this way. Some of his herbs help to boost a compromised immune system, and some act as anti-inflammatories. If you are going to use a strictly herbal protocol, I would find a trained herbalist and have them read Buhner's information. If they think it will work, you could go from there. We are still working with our LLMD and a TCM trained naturopath. I wouldn't try this on my own.

We are using the Buhner bartonella protocol now, and are slowly adding back A-Bart per the LLMD. DD was taking Japanese knotweed the whole time she was on abx, but probably at too low of a dose (1 cap SourceNaturals BID). She is now taking 3/4 tsp decoction throughout the day and 1/4 tsp tincture TID. I suspect that dosage of knotweed may have helped with herx produced inflammation, but I didn't see the real difference it could make in brain inflammation until I increased the dosages. After 2 years of multiple combo abx she weaned off in April - 5 months now, and is doing really well. We are having blips ramping A-Bart but they have resolved in 3-4 days (some headache, shin pain, emotional lability, but executive function and ticcing are fine). She had a herx reaction with panic attacks when I tried to increase her dosage of houttuynia to 1.5 tsp decoction taken throughout the day. After talking to Buhner's associate, she said a lower dose (3/4 tsp) was fine for a 75 lb child, but that we would have to stick with it for a year or so. DD is taking 1/4 tsp sida actua tincture TID and 5 drops teasel tincture TID. We are using low dose astragalus (500mg QD, Mon, Wed, Fri) and ColdFx (extract of American ginseng) (2 caps Tues, Thurs) to boost the immune system - these infections can't be overcome without some immune function. Buhner's associate suggested cordyceps instead of astragalus, which is less stimulating on the Th1 pathway. This gave DD a huge boost of energy, too much really as she is no longer dealing with fatigue. Because of this I haven't given it to her again, but should perhaps try at some point as Buhner thinks it is important. However the dosages he suggests (1 tbsp TID) are a lot larger than what I had used (1/2 tsp BID). Not sure what the reaction to that would be. I use the protocol myself and had the same initial jolt with cordyceps, but this reaction seems to have leveled out as I keep taking it (1 tsp BID, morning, afternoon). I also herxed with 1/5 tsp houttuynia, but my reaction was more body/muscle/joint inflammation which resolved by decreasing the dosage. I seem to tolerate the same dosages of the herbs as DD. Not sure what that means as I weigh twice what she does. We continue with some of the other supplements we had been using during abx treatment. Liposomal glutathione and methyl B12 QD, NAC and l-glutamine QD 3x weekly, methylfolate and P-5-P QD 3x weekly, TransferFactor QD, phosphatidylcholine QD, curcumin QD, CoQ10 QD, probiotics or fermented vegetables daily. After all that, DD continues to improve after discontinuing abx in April. Whether or not this can be attributed to our present protocol, I am not sure. Would she be at this place if we hadn't used abx, initiated methylation and immune boosting protocols, and could we have gotten here with Buhner alone? IDK. I notice the difference Buhner has made in my brain fog, foot and muscle pain, but I have not been tested for bartonella/lyme, so don't have a positive diagnosis. If you don't have the book and are thinking of using the protocol get his mycoplasma/bartonella coinfections book. It is very informative.

We were prescribed Virapress (bovine albumin/globulins) drops. It caused a large inflammation reaction for me - muscle and joint pain, flu-like symptoms - like my immune system was in overdrive. I didn't even bother to try it on DD. The reaction was substantial and very quick. We had been prescribed 4 drops daily. My reaction was to two drops. We seem to have more success using herbs to stimulate our own immune systems ie., low dose astragalus, COLD-FX (extract of American ginseng), and cordyceps.

Just some things that came to mind as I was reading. Please understand that I am seeing all this through my lyme/bartonella infection lens. I am very familiar with these symptoms, but they could well be caused by other infections or conditions: - continuing sore throat - chronic unresolved strep - chronic shin pain at age 15 - by that age, most females have nearly reached their growth potential so this was probably not "growing pains". This is a very common symptom of bartonella as these bacteria invade bone marrow, in DD's situation her bone pain included shins, forearms and skull. - anorexia, anxiety - can be a PANDAS/PANS symptom. DD had anxiety attacks, but not anorexia. Her OCD symptoms included drawing the same pictures over and over. - movement/pain disorder - lyme can be misdiagnosed as MS, ALS, Parkinsons, all of which have an autoimmune neurological (pain) component. DD did not have this symptom. - tachycardia - bartonella effects endothelial tissues including that of the blood vessels and heart and can cause heart symptoms. DD had palpitations and some tachycardia. - fatigue - this was one of DD's main symptoms. Any exertion ie, bike riding for 1/2 mile would result in her having to sleep for a couple of hours in the afternoon. She was unable to play with friends and had to watch from the curb. - severe insomnia - DD always had trouble getting to sleep at night, and while she was young we resorted to a white noise machine. For the two years before her treatment started, she would wake around 1:00am and be up until 4:00am. I always insisted that she stay in her room, and so she did. Reading the night away. Poor little thing. - reoccurring infections - lyme and the coinfections are very immune suppressive.

I agree with LLM about the self diagnosis (I thought I was dealing with simple mid-life hormone swings for a long time), and self treatment. I do a lot of googling and come up with some different treatment ideas, but will always run them past our LLMD or naturopath first. Your achy/flue-like (with no fever) symptoms could be a gram-negative bacterial die-off (herx) produced by the anti-biotics. Lyme/co-infections often cause stiffness at the base of the skull and other meningitis-type symptoms (light/sound sensitivity, headache). These do not necessarily result in full blown meningitis, but my daughter had this symptom for months before her diagnosis. It cleared pretty much as soon as she started proper treatment. Penicillin for strep did nothing to alleviate her neck stiffness although the first round of penicillin did help her motor ticcing and ADHD/raging behaviours. During the second round all symptoms, including sore throat, came back while still dosing. When our daughter started treatment the LLMD OKed our use of Japanese knotweed along with the abx protocols, and as Buhner says that using his herbs together with abx is not a problem, we have used knotweed since the get go. It is an excellent anti-inflammatory, but needs to be used in sufficient amounts. Buhner's associate says that the powdered herb is as effective as the tincture, although we use both. We get the organic powdered herb from 1st ChineseHerbs ($15/lb) and the tincture from WoodlandEssence $40/4oz. We use 1/4 tsp decocted powder and 1/4 tsp tincture 3x daily. While we were ramping on the Buhner protocol DD did have some herxing, and in my bid to reduce the herx quickly I discontinued all the herbs (knotweed, sida actua, houttuynia, teasel). After about day 5 I started to see some atypical behaviour from DD. Hyperness, talking back, generally being nasty. I gave her 1/4 tsp knotweed and things eased a little, but still not the best. I then gave her 1/2 tsp knotweed tincture and my angel was back in 1/2 hour. It was amazing and made me a believer. The proper dosage does make a difference. I find that overdoing knotweed will produce low blood pressure though, so only use as much as you really need. I feel that knotweed is the reason DD has done so well on abx. It helps reduce the cytokine-induced inflammation produced by the bacteria as well as the inflammation produced during bacterial die-off. It has just made everything go a little easier. If you think you are dealing with lyme/co, go ahead and buy Buhner's books. I guarantee you will not be sorry. And even if you don't have lyme, according to Buhner, the bartonella and mycoplasma species are pretty much ubiquitous. Many, many people are asymptomatic carriers that will sooner or later have an event that supresses the immune system, allowing the infection to florish.

Yes, a steroid taper would be diagnostic of brain inflammation, but inflammation can be caused by different things, antibodes, cytokine cascades. If you have an active bacterial infection that is not being properly addressed by the correct abx, you risk exacerbating the infection with the immune- suppressing effects of the steroids. Steroids have worked for many here, but if you are not sure of the infections you are dealing with, I would be cautious.

Some good links for this type of diet: http://perfecthealthdiet.com/ http://www.thepaleomom.com/ http://www.marksdailyapple.com/#axzz2e1lS80HB http://www.againstallgrain.com/

Has your LLMD tested him for lyme and co-infections (Igenex test)? Even though his strep titers are high, his symptoms do not have to be necessarily caused by strep, there could be other infections playing a part as well. The joint pain could be caused by strep or lyme. Have him tested for MTHFR deletions. Many here use 23andme. Addressing methylation blockages often helps. Our daughter reacted with PANDAS symptoms to strep infections although this was not her primary infection. Lyme and bartonella suppressed her immune system and allowed other infections to become problematic. If you have lyme/MTHRF deletions, there is a distinct possibility that your son is dealing with these issues as well.

We use both Japanese knotweed tincture and powder decoction.

Even with the genetic testing available today, doctors don't know enough about how different alleles impact the metabolism of these drugs, and waiting until they do was not an option for us. And then there is the stability of the gut/BBB which can be effected by diet or by the cytokine cascades produced by different infections. When starting different drug protocols (abx or psych), be aware of the possibility of these negative reactions and change your protocol if necessary. "Start low, go slow". A herx reaction is produced by gram negative bacterial endotoxin release and the results of it's inflammation on the body and brain. It is not produced by gram positive bacteria. If methylation/detox pathways are functional the reaction should resolve over time (the amount of time depending on the capabilities of the pathway). I agree that a large herx reaction may cause a great deal of inflammation and perhaps become even more dangerous than the infection itself. In our case, each change in abx protocol produced an initial herx reaction which gradually resolved while remaining on the protocols. I think we would not have seen the same type of resolution if DD had been dealing with a drug reaction. She did have an allergic reaction to bactrim, which started out as what I thought to be a herx, but which escalated over the course of a couple of weeks to hives and facial swelling. We discontinued that one. PANS reactions are caused by inflammation. In our case the inflammation was caused by endotoxin release and not so much by the production of antibodies. DD's PANS reactions which flared with protocol changes/herx's, resolved with detoxing and the use of anti-inflammatories. She still has positive bartonella igg antibodies but in no way is she a candidate for IVIG/PEX.

DD had them as well, darkening with exacerbations. Nothing specific we did to get rid of them, they just gradually resolved as she healed.

You will not have much luck convincing a non-PANDAS believing doctor to treat PANDAS properly. Please don't waste your time trying to do so. Look for a specialist.

Are you seeing a PANDAS specialist? Many children here respond positively to anti-inflammatories (steroids - not in the case of bacterial infection please, ibuprofen, curcumin, japanese knotweed in our case), which would point toward inflammation as one cause of symptoms.

One exacerbation was never like another. It depended either on the infection (viral? bacterial?) or on the new antibiotic protocol were we initiating. The exacerbation seemed to last as long as it took her body to detox, and would decline to a present but low level. While on abx treatment ticcing was always present, waxing (to level 8/10) and waning (to 2/10) with infections and changing abx protocols (especially tindamax). The only time they disappeared was when DD started treatment with malarone (anti-protozoan). Why this was, IDK. She tested negative for babesia but we never tested for other protozoan parasites. Perhaps there was some anti-inflammatory action to malarone. After weaning from abx and continuing with anti-inflammatory/bartonella herbal protocols she is at a level 1/10 for ticcing. I ask her daily if she has had ticcing. She replies no, and I see no evidence of it, but she is still forced to tic once when I ask (and we giggle), so I know it's still there. In the beginning I kind of assumed that antibodies to the infection were producing brain inflammation and thus symptoms (the description of PANS/PANDAS), but over the course of the last two years (and recording daily in my handy dandy Excel chart ) I realized that her symptoms were more likely the result of bacterial die-off caused by the fever. Usually the exacerbation would last a few days to a week, probably not long enough for her body to clear inflammation-causing antibodies, but long enough for her body to clear endotoxins. This was true in our case, but perhaps not for others. We also used Japanese knotweed daily for inflammation and continue to do so. If you are addressing any methylation defects and detoxing daily (we use lemon water, epsom salt baths, daily psyllium away from supplements, probiotics) and find no resolution to the exacerbation you may be dealing with true antibody-induced brain inflammation. To boost DD's immune system we use COLD-FX (a Canadian supplement of American ginseng extract) daily as well as astragalus 3x weekly. Buhner says not to use astragalus in chronic lyme as it stimulates the Th1 pathway too vigorously, possibly resulting in inflammation (and an exacerbation of symptoms), and suggests the use of cordyceps , but we find low doses of astragalus to be effective. DD is also taking 3 mg allicin (garlic extract) TID.

DD had the exact responses to infection/fever that you describe both before and throughout most of her treatment. She no longer gets the after-fever exacerbations. Sorry I can't be of help because I don't understand the responses either, but with healing these reactions do diminish. Interesting about similar reactions in syphilis patients, I didn't know that. Perhaps fever kills off gram-negative spirochetes releasing endotoxins and there is a herx afterward.

Thanks for this. No more guessing, just figure out which ring you're in. I especially like the "no advice" part.

Just a thought, probably not helpful at the moment, but for the future.... For the last 3 summers I have had DD practice typing (we use the Mavis Beacon DVD) when time allows. She has memorized the keyboard and flies through composition now. DD is also a fast thinker, but had significant gross motor issues. Printed letter formation was a challenge for her and she would spend most of her allotted time trying to form the letters properly. As a result her answers were generally very short and lacking in coherence. DD (now grade 7) has an accommodation for typing if necessary. Before this she had an accommodation for extra time (even time at home) for completeing written work.

Strep is a gram positive bacteria (single cell wall) and doesn't contain endotoxins between a double cell wall the way gram negative bacteria do. If you find a decline in your symptom flare with decreased or discontinued abx dosages, the abx you are using may be treating other underlying gram negative infections.