rowingmom

We started out using SourceNaturals resveratrol (made from knotweed, not grapes) and were using 1 cap BID. Since moving completely to herbals we have switched to both a tincture (WoodLandEssence 1/4 tsp TID - $40 for 4 oz) and the organic powdered herb (1stChineseHerbs 1/4 tsp TID - $15 for 1lb - lasts 6 months - made into decoction). This seems to hold her at a good baseline. If I find her herxing from protocol changes (we have recently readded A-Bart, and will be starting near ir sauna in a bit), an extra 1/2 tsp helps bring her out of it. I'm not sure if this helped get DD into remission, but it's a good anti-inflammatory, especially for the brain (at high enough doses) which our kids seem to need. We have not used much ibuprophen because of the potential liver effects, and with her infections we will not be using steroids unless she is also on high dose abx. We are hopefully past the need for abx (but who knows), so we rely on knotweed and curcumin for inflammation symptoms. I know we are still dealing with bartonella because she is herxing with higher doses of herbals, but right now she is in a good, functional, non-ticcing remission.

We have not treated for parasites at all, although many are starting to think they could be the missing link to healing. Buhner's associate has suggested we start diatomaceous earth, which we have, and we are using garlic as well. I would be interested in what Dr H has suggested for your son.

Both links were interesting, thank you.

EAMom. Thanks for the link.

You haven't really pulled out the big guns abx-wise. For bartonella positive, lyme IND our daughter was treated with 1 year of continuous biaxin/rifampin with pulsed tindamax added for the last 3 months. Tried to wean abx, but relapsed. Then our LLMD used malarone (assuming babesia was a problem, although DD had no symptoms and tested negative), plaquinel, minocycline, zithromax, tindamax, at first all continuously (except tindamax which was still pulsed) and then all pulsed, 4 days on, 3 days off, because DD couldn't detox fast enough and symptoms kept ramping. This was when she really improved, so I think a protozoan of some sort could be involved. During this whole time we used Japanese knotweed because Buhner says that if there is only one herb to take for these infections, this is it, to help decrease inflammation, especially in the brain. DD used hugely high doses (30 drps BID) of A-Bart for 6 months, but bartonella remains - her herbal herxes are all bart. I'm not sure if it helped or not. We are back on it with Buhner herbs, but just at a low dose. I can't seem to get her past 2 drops BID, but on low dose she does well. Many people think treating for parasites is necessary. We haven't really done that yet.

In the case of lyme disease, the CDC, and indeed Igenex, require a certain number of positive bands to give you a positive result for lyme. If the number of required bands on the WB (Western Blot) is not met, the test will read "negative for lyme infection". The CDC removed some of the lyme-specific bands from their WBs, because people who had been previously vaccinated for lyme were returning these bands as positive when they were tested for antibodies. Igenex has retained the lyme-specific bands eliminated by the CDC. A LLMD will look for the presence of these lyme-specific antibodies. The strength of the response is not important. If a reaction is present, either indeterminant (there but weakly), +, or ++, the anti-bodies specific to borrelia are present, indicating a lyme infection. A weak response may be indicative of immune suppression. As our daughter is treated for bartonella, the number of reactive bands on her WB are increasing. The results of the WB have nothing at all to do with the presence of coinfections - bartonella, babesia, ehrlichia, mycoplasma, RMSF, etc.

After the first month my heavy periods slowed to a trickle , and cramping became non-existant. I used to have to pop tylenol and lie in bed with a hotwater bottle, but no more. I hope it works for your migraines, they have never been a problem for me. And no, progesterone didn't make me sleepy at all, just more relaxed. Sleep definately comes easier at night though. Pay attention to your bothersome symptoms. If they aren't resolving after a couple months with the suggested amount of ProGest, I would try upping the dose a bit. I started out with ProGest, but found I was needing a more concentrated cream, or I would be slathering myself all day long.

I tried DIM for a while before progesterone (because at one point California was forced to place the notification that progesterone is a known carcinogen on all packaging - once again the progestin/progesterone confusion, but I hadn't learned about that yet) but didn't really notice a difference. It was expensive at that time too (2005). None of my family seems to have a problem with sulpher or curciferous vegetables, so we eat lots of those. If I was you I would start with a small amount 2x daily (1/16 - 1/8 tsp) and do this for a while. If you start low, you will decrease the chance of an estrogen dominance reaction. If your hormone receptors are filled with estrogen and you start displacing it into circulation by the substitution of progesterone, your estrogen symptoms will increase. Like everything mentioned on this forum, start low and work up. As an alternative, Wray also suggests using really high doses to start, but being a chicken, I started low. In my case estrogen dominance included painful swelling of my varicose veins. I really thought I would have to discontinue because of this, even though it improved my mood, but after a while (a few days to a week) the pain and swelling subsided. I only get painful veins now just before my period starts, when estrogen is highest (even though I continue supplementing progesterone). At one point, when I was 48-49, I was taking 1/4 tsp NatPro (not sure of the dosage) 3x daily. It really helped with derealization, brain fog, palpitations, fatigue, morning-sickness-like nausea, anxiety/panic attacks, HEAVY periods and painful cramping. Since then I have always wondered if morning sickness is actually estrogen dominance caused by increased estrogen before the placenta starts producing higher amounts of progesterone. Now that I have started using Buhner to treat bartonella symptoms, I have been able to decrease my dosage to 1/8 tsp 3x daily. I haven't really tried huge doses of it, so I am not sure about progesterone dominance symptoms. Wray doesn't seem to think too much progesterone would even be a problem, but I am not so sure... I asked for an Rx for bioidentical progesterone from our doctor. He gave it to me saying "this stuff doesn't really work - it's only placebo effect". He needs to come back as a perimenopausal woman in his next life! It ended up costing me $78/ tube, and wasn't covered by our healthcare system because it didn't have the DIN number they need for reimbursement. So I found my own. Just like I found help for DD - all by myself (and with the help of you guys, of course!).

Yes, it sure is! Thanks LLM - our very own resident MTHFR guru!

Your doctor is probably afraid to treat outside the ISDA guidelines which aren't in agreement with the extended use of antibiotics. The use of protocols which don't adhere to the guidelines can cause the doctor's practice to come under scrutiny. Lyme Literate Doctors and PANDAS specialists deal with this possibility on a daily basis. That is why we don't mention doctor's full names on the forum. These are the only doctor's willing to put their practices on the line for our children.

I have been aware of the progesterone/brain injury links mentioned in the first post for quite a while, although the mention of using synthetic progestins in place of the bioidentical hormone in the later posts makes me realize that few people understand there is a difference. Synthetic progestins can act quite differently from the bioidentical version. http://www.progesteronetherapy.com/traumatic-brain-injury.html#axzz2gfOA58A6 Medical references are posted on a link at the bottom of the page. The woman that writes this blog is very informed on the current research on bioidentical progesterone, and uses it to help alleviate her symptoms of chronic disease. She owns the company that sells her product (NatPro), but I really think she is in the game to help others, and not to just make money from sales. Her medical references for all of her comments on progesterone and vit D are extensive. The prices for this product are lower than for either Emerita or ProGest, and the concentrations of progesterone are higher. As I am approaching menopause, and DD is approaching puberty (both estrogen dominant periods in a woman's life), we are both using natural progesterone. We both find it to be calming. It hasn't really helped with the physical/pain problems of bartonella, but definately helps with anxiety and fight/flight feelings.

I agree with mama2alex completely!

These are the articles I use: http://intramural.nimh.nih.gov/pdn/pubs/pub-13.pdf http://intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf And for a good list of symptoms that can be expected: http://latitudes.org/downloads/pandas_pans_scale.pdf

Magnesium oxide is not well absorbed - try citrate. We use epsom salt baths (magnesium sulfate) to relax, but some people have trouble with sulpher compounds. Pay attention for any negative reactions. B6 as well can be a problem. Many of our kids have MTHFR genetic deletions which can cause a slowing of the methylation cycle. These kids need to supplement with methylated versions of B12, B6 and folate, and can have adverse (or increased symptoms) reactions to the unmethylated versions. Some react to sulfer containing supplements and foods. I would stick with magnesium for now. I think a trial of abx would not be a problem if you keep an eye out for allergic reactions. There is much to learn, sorry to throw this all at you at once. I daily chart all of DD's symptoms against treatment using an Excel stacked bar chart. If you would like a template just PM me. It saves having to write notes, and it saves the doctors from having to decipher them.

We have not used ceftin either. And msimon3 is right, if he has lyme (has he been properly tested for all coinfections?) your son will need more than monotherapy. You may be able to help symptoms for a while if the spirochete's have encysted, but eventually they will come out of hiding. A protocol which addresses all 3 forms is needed. I know exactly how you feel, that horrible sinking feeling...I remember crying for a week, But you will pick yourself up because you are a Mom! and you will wrap your head around this as you did with PANS, and you will figure it out. And you might end up helping others in your family as well. Actually, it was our daughter's lyme/coinfection that caused her PANS reactions. Lyme is notorious for causing autoimmune responses (DD had positive ANA titers), and was certainly responsible, in part anyway, for our daughter's symptoms.

Your daughter"s symptoms sound much like ours did in the beginning. We used two 10 day courses of PenV for a positive strep infection. 3 days after beginning the first round, all of the symptoms resolved, but came back when the abx were discontinued. After starting the second round, again symptoms resolved but then returned approx. 7 days in. This could have been a herxheimer response (which occurs when gram negative bacteria die releasing inflammatory endotoxins), or perhaps because the single antibiotic was not capable of clearing the infections we now know she was struggling with. Strep is a gram positive bacteria, and therefore not capable of producing a herx response. We found out that DD's PANS symptoms were caused by a bartonella infection. These infections can be hard to treat and the IDSA (Infectious Diseases Society of America) will generally not treat long enough to gain remission. We ended up finding treatment with an ILADS (International Lyme and Associated Diseases Society) trained LLMD (Lyme Literate Medical Doctor). Please be aware that strep is not the only cause for these autoimmune reactions. I would find a PANDAS/PANS specialist to help with diagnosis.

First thing, I feel you really need to be supplementing with probiotics. We used 75 billion mixed cultures daily with most being given at night, the idea being that they may have time to colonize while you are sleeping. We used FloraSmart, Culturelle and Align. Take at least 2 hours away from abx. You run serious risk of developing C. diff and candida overgrowth with long term abx use. The gut is a very important part of the immune system. Some PANDAS children have trouble with strep-containing probiotics (S. thermophilus) and need to avoid yogurt and kefir for that reason. Some use saccharomyces to help candida over-growth, but others can have trouble with it causing the yeast symptoms we are trying to avoid. As for acronyms: ILADS: International Lyme and Associated Diseases Society http://www.ilads.org/ PANS: Pediatric acute neuropsychiatric syndrome http://latitudes.org/downloads/pandas_pans_scale.pdf Methylation: Quite a few of us are finding that our children have MTHFR genetic deletions which impede the methylation cycle. http://mthfr.net/ DD: Dear daughter, DS: dear son, DH: dear husband, etc. lipoprotein OspA: an outer surface protein of Borrelia burgdorferi sensu stricto Antibiotics as anti-inflammatory agents: http://www.ncbi.nlm.nih.gov/pubmed/12054075 You may find more information pertaining to your specific symptoms on this forum: http://flash.lymenet.org/scripts/ultimatebb.cgi

Lyme (and coinfections) and PANDAS (now called PANS because specialists are coming to realize that the autoimmune brain inflammation component can be caused by things other than strep) makes definate sense to us. As for the "pediatric" part, the forum is seeing some adults impacted by this syndrome. Whether or not they were effected as children and the syndrome continued into adulthood, or whether symptoms developed from infectious exposure later in life is unknown. In our daughter's case her PANDAS/PANS symptoms were caused by bartonella. She had a couple IND lyme-specific bands on the Igenex WB, so lyme is there, but her problems were caused by her bartonella coinfection. Raging, age regressive social behaviour, problems with spacial interpretation/orientation, her inability to interpret social cues, and indeed her diagnosis of asperger's, have resolved over the last 2 years with multiple combination antibiotic treatment. We work with an ILADS-trained LLMD who treats clinical symptoms. After 1.5 years of treatment our daughter was still unable to wean from abx without immediate relapse. In an attempt to discover other causes for this reaction, our LLMD suggested malarone to address hidden protozoan parasitic infections (DD had tested negative for babesia, but there are many other protozoa/parasites). She improved impressively after this protocol was started, and was able to wean from abx in April. We continue with Buhner and ByronWhite herbal supplementation because I have no confidence that these infections can be completely erradicated. You are lucky to have found a doctor who will experiment with treatment in the way ours did. Sometimes this is the only way to pin down the complicated multiple infections resulting from the immune suppressing abilities of lyme and the coinfections. Lyme/co can impact hormonal regulation. So glad to hear that your hormonal imbalances are also responding to treatment. Many allopathic doctors can't understand the connection between hormonal disregulation, psychiatric symptoms and infection, but most naturopaths and LLMDs will. Best of luck in the future, you are on your way!

Although we haven't delt with mono, our daughter's PANS symptoms were caused by a lyme / bartonella infection. We would see flares, often dramatic, to other infections, both bacterial (as in strep) and viral (as in cold or flu). Treating bacteria (strep) with abx brought some relief, but symptoms would always return. It wasn't until we treated bartonella agressively that we saw this infection / flare cycle resolve. She no longer responds to infections with PANS/PANDAS symptoms

3bmom - was your eldest son treated for his infections, or did he recover on his own? We are almost 6 months out from abx, but I too am waiting, waiting......will it come back? When my sister was young she had several symptoms that seem very familiar to me now. Her joints were very flexible, she had dark circles under eyes all the time, her hair was thin, and she was small and slight. She had (and still has) a wonderful memory - steel trap even. She was very emotional and would fly into rages. I learned to give in to her when she wanted something, even though I was 2 years older. She had some slight OCD, needing things just so, bed tucked in, no light coming through the curtains at bed time, but nothing terrible. I do remember our mother, on occasion, saying that she couldn't take my sister's behaviour, and would actually threaten to send her to boarding school. In high school my sister developed bulimia and this went on for about 10 years. In her early 20's she was on Prozac for a while but eventually gave that up. After that she seemed to recover from whatever her problems had been. Dark circles gone, relatively happy, outgoing. Still the smartest in the family. DD is similar in many ways, but seems to be more impacted. I hope we see the same permenant recovery my sister has had. Thanks everyone for the hopeful stories.

Agree with LLM, you need to investigate MTHFR. As she mentioned, go ahead and check aso, but PANS can be caused by other infections as well. Please test for bartonella and mycoplasma. I don't think lyme causes bipolar behaviour, but bartonella sure does.

While we were trying to resolve the flare caused by grapefruitseed extract we used 500mg BID (SourceNaturals Turmeric with Meriva). DD was 72 lbs at the time. She was also taking 1/4 tsp japanese knotweed tincture TID.

I would have to say yes as well. When DD started tindamax her herx response didn't appear to be the same as with other abx we had used. With the other abx there had been a herx/resolution cycle of between 4 days to 14 days depending on the protocol. With tindamax we just saw the herx, escalating, with no resolution. For this reason our LLMD suggested pulsing 4 days on, 3 days off. It was only by pulsing that we were able to see any resolution of herxing with this drug. With each successive pulse the initial herx would be less dramatic than the previous had been. When DD had gotten to a point where she was no longer herxing with the introduction of tindamax each week, we were able to wean from abx.

Here is a comprehensive chart of lyme and coinfection symptoms: http://www.lyme-symptoms.com/LymeCoinfectionChart.html If your doctors are giving up on you, find one that will not. DD never had a spinal tap, nor did she require IV abx. Don't be afraid.

Have you been using anti-inflammatories? If steroids worked initially inflammation is probably involved, We use curcumin and japanese knotweed. These helped DD when her tics flared horribly after using grapefruitseed extract. Her teacher actually called me saying the difference in her ticcing was night and day - what had I done?