rowingmom

Go to the ILADS website and find a ILADS-trained LLMD in your area. You will get the proper testing there, usually an Igenex Western Blot for lyme - Igenex tests for more lyme-specific bands than do other CDC approved tests. The CDC removed lyme-specific bands from their tests when people who had received the lyme vaccine began testing positive for lyme. An ILADS-trained LLMD will treat on clinical symptoms alone. Many people find that they seroconvert to positive on these tests after some period of treatment with the proper abx. All of these infections are immune suppressive, and tests relying on antibody production are questionable. mdmom is right - lyme is very rarely found on it's own, and it's usually one or more of the coinfections (bartonella, babesia, mycoplasma, ehrlichia, RMSF, etc) that are causing symptoms. In our case it was bartonella. These infections can all result in brain inflammation and menengitis-type symptoms, as bartonella did for us. Our daughter actually tested negative for lyme (although she did react weakly (IND) to one of the lyme-specific bands), but positive for bartonella through Igenex. If we had stopped with the negative lyme result we would not have found bartonella and treated for it. Our LLMD knew enough not to stop at lyme.

Good for you to make the connection! So many doctors are unfamiliar with these infections.

Please, not Boston's Childrens Hospital. Their PANDAS naysaying doctors removed this child from her parents custody for treatment: http://bostinno.streetwise.co/2012/10/12/elizabeth-wray-boston-childrens-hopsital-custody-battle-pandas-pans-disease/ There are other PANDAS friendly hospitals out there. Don't go to this one.

Please check the possible "infection issues" .

DD is heterozygous for the A1298C deletion. She is currently taking 1000 ug L-5-methyltetrahydrofolate (ProThera) and 30 mg P-5-P (B6 from KlaireLabs) 3x weekly (mon, wed, fri), and methylB12 1000 ug sublingual 1-2x daily.

Our LLMD ordered the whole lyme and coinfections panel through Igenex. Whenever we retest bartonella titers we use Igenex. The rest of our testing, including CD57 is done through LabCorp. Do herbs really work? Many prescription drugs are made from single extracts of herbs or fungi. These extracts are the ones that pharmaceutical companies have deemed to be the most effective. They are extracted and you pay an arm and a leg for them. When a bacteria/parasite is presented with a single chemical compound they can frequently rearrange their genetic material (by rotating plasmids and other small bits of DNA) to enable them to become resistant to that single chemical. They can develop efflux pumps which allow them to excrete simple chemicals as soon as they enter the cell. Not only are bacteria capable of doing this but they can also transfer these capabilities to other bacteria through quorum sensing. By using whole herbs you not only get the simple abx-like chemical, but also other medicinal components contained in the herb. These other compounds can have the ability to inhibit efflux (the berberines) or quorum sensing (like rosemary), or inhibit the cytokine cascades produced and required by the bacteria to cause the inflammation and tissue break-down necessary for nutrient extraction by the bacteria/parasite. The herbs that Buhner suggests for each infection has both an antibiotic effect and an anti-inflammatory effect which addresses the cytokine cascades specific for each bacteria. Buhner's idea is that if the specific cytokine/inflammation pathways can be reduced, tissues destruction is reduced, symptoms improve, and the bacteria relying on nutrients caused by the destruction are left weakened. To do this a nutrient dense diet is required to heal tissues that have been damaged by inflammation and to resolve nutrient deficiencies produced by the scavanging bacteria. He doesn't go into the use of probiotics, which can also be anti-inflammatory, in these books, but he is a big proponent of fermentation and has a book on the benefits of fermenting your own beer . We ferment vegetables because it just makes sense to me that if bacteria gain information through quorum sensing, the greater number of benificial bacteria you have, the more chance of them sharing information which could promote less virulance. Buhner in no way suggests that he can erradicate these infections with his protocols. His intent is to instead help heal the body, while at the same time reducing the bacterial load and weakening the remaining bacterial. He then uses other herbs to gently support/modulate the immune system allowing it to keep the remaining load under remission. All of his protocols can be used with precscription abx, and he does state that sometimes abx are necessary to reduce the initial load. Read Buhner's books and make your own decision. I would not have undertaken a strictly herbal protocol when DD was very sick. It may have worked, or maybe not, but it would not have been quick, which was what we needed at the time. DD is at a place now where I think the herbals can support her and help prevent relapse. She has been off abx for 5 months now and has shown no signs of relapse, and no longer flares when she gets a cold or someone else in the house is sick. During a consult, Buhner's associate mentioned that DD would have to be on this protocol for at least a year, and some people have to remain on low doses permanently. This would be fine with me. I never want to end up back at the place where we started. And don't kid yourself, herbs can cause herx reactions. Both DD and I (I am treating myself with herbs as well, and see the effects) over-did houttuynia (one of the main herbs for bartonella) there for a while and it wasn't good. Just to cover all bases, and because Buhner says his can be used with other protocols, we are now adding A-Bart (ByronWhite) to DD's mix as well. She used it at high doses while on abx, but I discontinued it when she stopped abx in an attempt to figure our the correct dosages for Buhner's herbs. We started again 2 weeks ago and are pulsing it 5 days on (1 drop BID), 2 days off and getting pretty much the same herx reaction cycle I saw while we were pulsing abx. Symptoms ramp and then decline over a couple days, getting back to a baseline on the days off. Just like we saw with pulsed abx, the second pulse is not producing the flare that the first one did, my indication that it is time to increase the dosage of A-Bart. I am charting herbal dosages on my handy-dandy Excel chart just the way I used to chart abx.

Lyme and the coinfections do cause significant inflammation. Hopefully when you find a LLMD, they will test for coinfections as well - bartonella, babesia, ehrlichia, mycoplasma. Our problem was bartonella and our LLMD was sure that it was the infection responsible for DD's PANS reactions. DD doesn't have much in the way of lyme symptoms. Throughout DD's treatment we used Japanese knotweed for inflammation, but probably not enough of it. If you want to learn about lyme and co, and are hoping to add in some natural treatments, Stephen Buhner is very informative. Buhner's site is here: http://buhnerhealinglyme.com/ There is some explaination of his herbs, their use, recommended dosages and sellers on his site, but purchase and read his books as well. Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma His book on treatment of resistant bacterial infections with herbs is good too. Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria Buhner is by far the best herbalist for treating lyme at the moment. He makes no money selling product (unlike some others who's protocols only involve the supplements they sell - Cowden, ByronWhite, Zhang, Jernigan), other than his books and he lists sites to buy the powdered herbs and tinctures in the back of his new coinfection book.

Paleo autoimmune diet http://robbwolf.com/what-is-the-paleo-diet/ PerfectHealthDiet http://perfecthealthdiet.com/ Vit C, zinc, low dose (once or twice a week) astragalus,

You may not be dealing with PANDAS (caused by strep) but a PANS reaction, caused by other things including lyme, bartonella, mycoplasma, babesia, viruses etc.. Our daughter's reactions were caused by bartonella, which can, in and of itself, produce major psychological issues. Search the forum for information on: 1) methylation and MTHFR genetic deletions - many of our children have these deletions which slow the body's ability to get rid of environmental and bacterial toxins. These can usually be addressed with methylated versions of B vitamins and omission of offending food from the diet, allowing the methylation pathways to run more efficiently. 2) herxheimer responses - a reaction caused by the die-off of gram negative bacteria (lyme, bartonella, but not strep) and the resulting release of endotoxins. This can result from abx treatment or an increased immune response and resulting bacterial die-off. If the body's methylation pathways are blocked by MTHFR deletions the toxins from these reactions are excreted more slowly than usual. 3) inflammation - many children find relief with the use of anti-inflammatories including ibuprophen and curcumin and Japanese knotweed. The raging you see is caused by brain inflammation, produced either by autoimmune reaction or direct bacterial infection and die-off. 4) detoxing - when toxins are released you can help the body remove them by increasing BMs using psyllium husk or chia seeds; try to bind the toxins in the gut so they remain there for removal (and not resorbed back through the intestinal lining); help the function of methylation pathways by drinking lemon (citric acid) water and taking magnesium supplements. You have come to a good place - this forum has saved my daughter's life as well. Most of our children have improved, many significantly, when all of these issues are addressed.

Would you happen to have a link for that? Thanks!

We use Nature's Way milk thistle capsules (175 mg milk thistle seed extract, 180 mg Blessed thistle aerial parts). 1 with evening supplements before bed. I have never given DD the tincture. She used this dosage throughout the whole 2 years of multiple, combo abx and not once had liver enzyme problems. We tested monthly.

Do get the Buhner book on bartonella coinfections and you will be up and running when you find a LLMD. We couldn't financially swing having both DD and myself treated for bartonella, so I have been treating myself with the herbals the LLMD and Buhner suggest for the infection. I am a happy, pain-free person again!

I would suggest getting tested for the coinfections. Bartonella, babesia, ehrlichia, mycoplasma. Our daughter flared with strep and viruses, but the underlying infection responsible for the suppression of her immune system seems to have been bartonella. When we first saw her, our LLMD said that bartonella was responsible for the PANS symptoms DD was experiencing. I believe she was right. We have treated bartonella for 2 years with multiple, combination abx and have now weaned off (of course during that period the multiple abx DD was on could have potentially addressed other infections we were unaware of). During treatment, any protocol that had the ability to kill a lot of bacteria produced a lot of ticcing. For a while there DD had trouble both talking because of vocal tics, and reading because of eye blinking/head jerking tics. I feel ticcing was the result of toxin build-up from bacterial die-off. We have always used detox protocols and methylated B vitamins to help her detox pathways. If your son hasn't been tested for any MTHFR deletions, he should be. It will help you choose supplements that are helpful, and avoid foods/chemicals that could cause a problem. We use curcumin and Japanese knotweed for anti-inflammatories and find them both helpful. Within 20 minutes of a herx-induced raging episode, 1/2 tsp of knotweed tincture (WoodlandEssence) will bring her right out of it. By charting I have observed that herx-induced ticcing gradually resolves as the body is allowed to detox. This happened faster if we were pulsing and her body wasn't inundated with abx every day. The pulses were stiff though - plaquinel, malarone, tindamax, azith and minocycline for the last 6 months. Don't give up. We have weaned from abx, but I'm keeping her on Buhner's bartonella protocol to reduce the risk of relapse. She has been great for 5 months now, but upping herbs or adding A-Bart (ByronWhite herbal) still results in small herxes. Bartonella is still there, but she is at a point where she isn't too symptomatic. Her CD57 has gone from 18 in February to 45 last week. She is getting there, and you can too. Keep at it, you are a good Mom!

Just looked up namenda, and it's chemical structure doesn't appear to have an SH (sulpher, thiol) group. http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=bc6e059d-1951-4fa3-b904-230d4165724d The molecular formula is C12H21N•HCl and the molecular weight is 215.76.

*a CBC test will not show elevated white blood cell counts with Lyme, co-infections, strep- our CBC's always come out 'perfect', have been drawn often, and we have positive infection tests at the same time. The steroids do shut down the immune system, and bacterial and fungal infections can flourish as a result. DD's CBCs have always been normal as well.

Several families here are dealing with PANS resulting from lyme and/or the coinfections (bartonella, babesia, mycoplasma). My daughter is one of them. If you have had cat scratch fever, you may have congenitally passed bartonella or other infections to your daughter. If your daughter is positive for lyme, it is likely that she carries 1 or more of the coinfections. I would suggest you find an ILADS-trained LLMD (lyme literate medical doctor) as soon as possible. I believe the ILADS website has lists of these doctors for different areas of the US. There are many doctors out there who claim to be LL, but unless they have ILADS training, they usually hold the IDSA ideas on treatment. This is a very controversal subject. If your doctor doesn't believe in long-term abx treatment for lyme you will not change his mind. Many people test negatively for lyme because it suppresses the immune system. They then think because they don't have lyme, they can't possibly have the coinfections either. This is a mistake. Our daughter was negative for lyme (she did have 1 indeterminate lyme-specific band though which was enough to convince our LLMD), but tested positive for bartonella through the Igenex lab. Please have your daughter tested for the coinfections, especially bartonella which can cause significant psychological problems. Stephen Buhner has two good books out on the herbal healing of these infections. Although you will probably want to go the allopathic route at first (we did), his books have very good descriptions of the effects of these bacteria, the cytokine pathways they initiate and ways to address the resulting inflammation. http://buhnerhealinglyme.com/ Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma His protocols can be used along with abx treatment.

NAC contains a thiol (sulpher) group and could potentially be a problem with a CBS mutation. This along with the added sulfasalazine may have resulted in a methylation blockage. I think some others here with CBS mutations have trouble with NAC. I have always associated an increase in DD's ticcing to be the result of toxin buildup.

Sorry, I messed that reply up. When you say tested for all viruses, does that also include other bacterial infections (esp bartonella)? Which infections were you treating with antibiotics? I have found that my gut instinct is a wonderful thing. You sound well versed with your daughter's situation, probably more so than any doctor or sister (I have one of those too ).

My daughter had headaches as a symptom of her bartonella infection, although the description did not match yours, so I didn't answer. Hers were several times daily and lasted a minute or two each time. They were more of a stabbing skull pain, not pain or pressure inside the head.

Our daughter did not have unwanted thoughts, or really too much OCD. Her problems have mostly been vocal/motor ticcing and pain/fatigue. I just wanted you to take a look at the signiture lines under each poster's reply. Many of these parents have found infections (other than strep), methylation mutations and food sensitivities which contributed to their children's problems. Please test for strep, but if negative and titers are low, keep looking. You have found a wonderful forum here.

The group of souls on this forum are the only ones who understand what my daughter and I are going through. We could not have attained the level of healing we now enjoy without you.

On diet and autoimmunity: http://perfecthealthdiet.com/2013/09/autoimmune-panel-wahls-ballantyne-jaminet-gray/

I just found this post, and thought it interesting: http://gotmag.org/mg-deficiency-affects-mthfr-really/

My husband was pushing hard to get the kids vaccinated for H1N1/swine flu, but I was hesitant because of the adjuvent. That fall a hockey player the age of our son (12 at that time) died while playing and the media blamed it on the viral infections. I imagine most of Ontario's hockey-playing families rushed to get their vaccines at that point. I was still hesitant. Then our son came down with a fever for 2 days, no one else in the family was affected and I didn't notice any significant ramping of DD's symptoms, but that was before charting. Then they announced on the radio that anyone who had had a fever within the previous 2-3 weeks had probably been infected, and that close contacts had probably been exposed as well. So I didn't have to take the kids for vaccinations after all, and I really, really was not wanting to do that. I can trace the start of DD's motor/vocal ticcing symptoms back to the fall of 2008 with an MMR booster / insect bite.