rowingmom

Here is a good video on the psychoimmunology of tick-borne disease (I would say arthropod-borne). https://www.youtube.com/watch?v=7kG7BHlByeQ DD14's treatment for bartonella/babesia (both lyme coinfections) resolved her psychiatric diagnoses. Please have your daughter tested for these infections as they are routinely found comorbidly with lyme.

@ Albymom - have you trialled the micro algae oil, or are you steering clear of all PUFAs? DD14 used to have intermittent petechiae rashes on her back, chest and thighs, which would last for 3-4 days and then disappear. No itching and hardly noticeable. She hasn't had them for a while so I assumed they were associated with her infections. Rashes are so hard to diagnose.

Myriad Mycology from 1stChineseHerbs

DD14 doesn't react to vit D, only the PUFAs. I supplement 1000 IUs in the winter, and she gets lots of sun in the summer. We eat plenty of red meat, although it is lamb (pastured), not beef or pork.

DD14 uses cordyceps (1/4 tsp 3x daily), with no autoimmune or herxing issues. As with any herb, start slowly (maybe 1/8 tsp) and gradually increase if there are no negative (or herx) reactions. I was hesitant to start it at first because I saw some mention of lead contamination. But that was from the lead wires placed in the bodies of the harvested caterpillers (to increase weight and thus price). The brand we use is grown on rice. Lyme, bartonella and babesia are so immune suppressive that any treatment protocol needs to include immune support in my opinion.

DD14 has been totally asymptomatic for PANS/bartonella for a year or so now, her only remaining symptom had been a propensity toward motor ticcing - her vocals are long gone, thank goodness. Her ticcing is generally only suggestible but sometimes becomes visible to herself and me (not usually others). It began again last summer, and through the fall got progressively worse. My husband blamed it on the stress of starting high school, but to me she didn't seem stressed. She has had poor reactions to fish oil supplements in the past, so this summer I started adding hemp oil to her whey/kefir smoothies. I didn't connect the dots when low level ticcing started. This fall I began supplementing with Cod Liver Oil for vit A because I hadn't found a good source of pastured, organic liver, and it just seemed easier. Ticcing just got worse and worse. It took a while for me to remember about the fish oil reaction (it had been so long ago), but as soon as I remembered, I discontinued the CLO - ticcing decreased. When I discontinued hemp oil her ticcing completely resolved. She seems to have no trouble with the more saturated oils (coconut and palm kernel oil) and monounsaturated olive oil and butter. PUFAs seem to be the problem.

We use a Meriva-based curcumin, as well as a turmeric tincture (among many other tinctures/herbs recommended in Stephen Buhner's bartonella and babesia protocols). I have never noticed DD14 herxing on curcumin, in fact by tripling her dose I significantly decreased some horrible herxing/ticcing caused by the introduction of GSE (grapeseed extract) that our LLMD recommended for plaque build-up on her teeth due to her antibiotic protocol. Within 1 day of starting the GSE (at 1 drop on her toothbrush whenever she brushed), her ticcing significantly increased, as well as urinary frequency and behavioural regression. It wasn't until the end of the week that I realized what the culprit might be. By that time she was vocal ticcing so badly that she could not do a scheduled oral presentation at school, and she was unable to read because her neck jerking and eye blinking were so bad. The teacher called me crying and feeling so badly for DD. I discontinued the GSE and tripled the curcumin and within 2 days she was so improved that the teacher announced me a miracle worker. The other PANS symptoms took a while longer to resolve back to baseline. I would ramp up as I do with all herbals, start low and if you think you see a herx reaction decrease to the point where you no longer see a herx. Stay there for a couple of weeks (or even a month if you are introducing the more heavily antimicrobial herb) before trying to increase again. If you are producing a die-off of some sort, the die-off will continue at the lower dosage, but her body will be able to detox it. You are the one to judge her responses, although she might tell you too. We have pets and they have never caused a problem for DD. But she also doesn't tend to be allergic to anything other than antibiotics, I'm not sure about your daughter.

Thank you. This sounds like something that everyone dealing with chronic health issues should watch.

If you are asking for my input - your DD16 has lyme/bart, and in all likelihood your entire family has been exposed. Those that aren't exhibiting symptoms likely have sufficient immune function to resolve it or keep it in remission, while those with symptoms (your DS18) may not and are therefore having problems. All antibiotics are not the same, and those for strep will not even touch bartonella (do not wish more strep upon yourself). DD14's strep infections stopped recurring when we started treating bartonella (which is highly immune suppressive) and her immune response improved. Even her lyme WB started producing more bands - another result of improved immune response according to our LLMD. If I was in your shoes and had been through all the messing about with strep and bartonella antibiotics that we have, I would seriously consider Buhner's herbal protocol for bartonella. If you don't have full resolution with that I would then add herbs from the babesia protocol as well. Herbs are broadly antimicrobial (cover more than just one or two different infections), and contain so many different constituents (efflux pump inhibitors etc.) that when you have a whole protocol underway, there is little or no chance (Buhner's associate told me no chance) of development of resistance by the bacteria. His book on the mycoplasma and bartonella coinfections is highly informative. Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma You should read it even if you decide not to treat herbally. Seriously, the babesia herbs made a huge difference in DD's cognitive/executive performance. So much so that her teacher called within 4 days to ask what I had done. She was grasping math concepts that had previously been beyond her, it was like a light bulb being switched on, he said. But you can't just do the antimicrobials and expect remission, the whole protocol needs to be used. Immune response needs to be supported and inflammation needs to be down--regulated to allow healing. When I came to the end of our allopathic choices I tried alternative ones. They have made all the difference.

Here I am! DD and myself are definitely not as electrosensitive as we used to be. And what a relief not to have tinnitus 24/7. My son was also electrosensitive before starting the cilantro/DE protocol, but his didn't show up until he started university. Unknown to him, his room mate purchased a wifi antenna for his computer so that he could send his games to his friend's room a couple of corridor's down. All the rooms in the brick/cinderblock residence are hard wired, so I thought this would be one issue we wouldn't have to deal with. Within 1 day DS (then 18 and never having experienced lyme/co/PANS ever) was complaining of migraines and an inability to concentrate. He called me asking what might be the matter - he is never sick and is very athletic and healthy (only organic foods from the farmers market). The first thing that came to mind was wifi, so I had him ask his room mate about it. Crazy that the response was yes, and that it was installed the day before. They worked out a deal where the room mate would only use wireless when DS18 was at the library or in class (both with wifi, but not as near to the router I guess), but not at night. As for the EE husband, my father was an EE, but passed away several years ago. Wifi was not an issue then, but I often wonder what his take on it would have been. Magda Havas (brought to my attention by our LLMD) asserts that the EMFs produced by wifi etc. act to destabilize our natural electrical currents/rhythms (think nerve conduction and heart beat). As a result, if we are exposed to these EMFs our bodies will continually be trying to rebalance back to homeostasis. Another stressor neither we nor or weakened children need. Our bodies are capable of handling stress; toxins, metals, pesticides which negatively impact gut bacteria (and thus immune response), vaccinations, bacterial/viral infections, EMFs, emotional stress; but an over-accumulation of stress must eventually lead to a tipping point. My feeling is that this is the point our effected children have reached. All I can do is recommend these websites: http://www.magdahavas.org/ http://www.c4st.org/ Your EE husband will think them conspiracy theory, or he will consider them as perhaps having some merit. Personally, when my husband told me lyme disease was not accepted by the mainstream and was therefore some kind of fantasy I had, I just buckled down and researched further. This strained our relationship greatly, but eventually as DD started to recover he came around. In my opinion, no amount of wifi or EMF exposure is healthy. Our bodies didn't evolve with this kind of interference and have trouble regaining balance when exposed. At home we have: - replaced cordless phones with corded. - wired the computer and only use the wireless when downloading. Other than that it is disabled. - set our phones etc. on airplane or keep them away from our bodies. Phones are turned off in the car because of the Faraday cage effect. - use text or speaker phone only to limit the amount of energy entering the skull. - turn off the electrical circuits to our bedrooms at night. This seriously made a big difference in how well we sleep. - brought in a consultant to do an EMF survey of the house. He found that the Xbox was emitting even when turned off. We had to pug it into a separate power bar which we could turn on and off. He also found a magnetic field around the circuit joining the bedrooms. After further investigation by an electrician we found a ground wire pulled from the attic into a closet lamp to be the culprit. - replaced all CFL bulbs with incandescent - placed Stetzer filters on all of the circuits to decrease the amount of dirty electricity being thrown from the wires. The night after I did this (unknown to my husband), he mentioned that he had slept extremely well. All of these measures were taken while we were still electrosensitive, and gave us some relief while at home. Our electrosensitivity outside the home didn't decrease until we started the cilantro/DE protocol - google "poor man's chelation". Then we really started noticing the difference. We never tested for heavy metals, so I'm not sure which ones were involved in our case. Know that mercury is sequestered in tissues so may not be obvious upon testing. My husband is constantly telling me that I need a tin-foil cap, but you know what, DD is better; and in my opinion that's all that counts. I'm not saying that EMFs are the only problem - there is not only one problem - there are many additive problems, and in my opinion we have to deal with them all to recover our children Never let anyone tell you that your intuition is wrong. If you feel strongly about something, it is your job to follow the trail to the end.

Congenitally passed lyme or coinfections could be the issue for your daughter. Our LLMD diagnosed DD14 with such after clinically diagnosing me with bartonella as well. As I have treated DD with bartonella and babesia antimicrobial herbs, I have treated myself as well with the same dosages and symptoms have improved dramatically. My "menopause" symptoms (diagnosed by both a PCP and an endocrinologist) which started shortly after DD was born have resolved. These included vertigo, palpitations, hot/cold flashes, tingling extremities, headache, almost continuous flu-like feeling, derealisation, brain fog, panic/anxiety attacks, loss of cognitive/executive function (especially multitasking) ie. getting lost going to the grocery store and forgetting how to spell simple words like "apple", forgetting how to turn off a light switch, word drop, joint pain in the lower back and elbows, raging, fatigue so significant that I could not walk up stairs without sitting down, insomnia. And more, but it's been so long now since I have had these symptoms that I don't care to try and remember the rest. Many of DD's initial symptoms were various motor delays and sensitivities to stimulus. For your allergic-type reactions I would investigate Mast Cell Activation Disorder: http://www.healingwell.com/community/default.aspx?f=30&m=3438440 There are several links in this post by one of the moderators on the HealingWellLyme forum which are worth reading.

Please make sure he is also tested for the other coinfections (babesia, bartonella, mycoplasma etc.), bartonella especially if he is having neuropsychiatric symptoms, babesia because of the vertigo. These are stand alone infections; lyme infection is not a prerequisite. Psychoimmunology of Tick borne Diseases and its Association with Neuropsychiatric Symptoms: https://www.youtube.com/watch?v=7kG7BHlByeQ

I'm glad to hear that everything is going so well. Good for you! Your post almost gives me the courage to try to wean the antimicrobial herbs, leaving the anti-inflammatory ones and probiotics. Our maintenance dosage of antimicrobials is quite low, but it would be nice to take an extended break. Sometimes I get tired of all the infusions and tinctures. I just found this article on GreenMedInfo which refers to the production of methylfolate by bacteria introduced into the gut through the use of fermented milk products: http://www.greenmedinfo.com/blog/how-microbiome-make-us-supra-human-1?page=2 Your mention of the adverse effects of fish oil struck a cord as well. I did notice an increase in ticcing several years ago with salmon oil supplementation and noted it in my charts, but apparently forgot about it when I started supplementing DD14 first with hemp oil in her kefir/whey smoothies this summer, and then with the additional supplementation of cod liver oil this fall. I noticed a bit of ticcng through the summer but thought nothing of it as she still has a bit of a propensity to do that (upon suggestion), but after the addition of CLO it became quite noticeable. She has been having ongoing orthodontic work done (braces, extractions etc.) and that seems to be the area effected by ticcing (jaws and neck). It took a while for me to remember that fish oil had previously been a significant culprit but then I immediately stopped supplementing the PUFAs. The ticcing cleared within 3 days and hasn't returned. She is fine with pastured butter/ghee, coconut oil and olive oil so I will leave it at that. Olive oil is mostly monounsaturated, so different from the other seed oils.

I would say that your daughter's bartonella has not been treated properly with the extended antibiotic protocol she has been on. Bartonella is immune suppressive, so would make her more vulnerable to strep. The presence of one infection doesn't necessarily preclude the presence or inflammatory effect of another.

"Speaking on the day of publication, Dr. Samsel said: “Glyphosate is a reactive product that causes damage at the molecular level. Chemicals that disrupt the microbiome and immune function do not belong in our food supply . To allow any living creature exposure to such a product is, in my opinion, poor judgment by government agencies and serves only to benefit the purses of corporations and their investors. Future generations will judge our actions or lack thereof and surely condemn those who repeat the errors of the past.” http://sustainablepulse.com/2015/11/06/first-review-of-secret-monsanto-studies-shows-glyphosate-cancer-cover-up/#.Vk3pg_9dHct The full paper can be found here: http://www.researchgate.net/publication/283490944_Glyphosate_pathways_to_modern_diseases_IV_cancer_and_related_pathologies If you are consuming GMO or conventional grains, legumes and/or conventionally (confined) raised meat, you are ingesting glyphosate. It's high time that RoundUp is implicated not only in the development of cancer, but in other chronic conditions caused by supressed immune function.

Yes. Move on. You don't have time to feel upset by what this doctor has done - don't let this distract you at all from finding the proper answer.

Organic. GF/CF/SF http://people.csail.mit.edu/seneff/ Organic is a must. Pesticides, especially glyphosate are used copiously on GM and conventional grains and legumes. On GM because they can withstand the herbicide and grow through repeated applications, on conventional it is used as a preharvest desiccant, drying down the crops to make combining easier. Glyphosate disrupts the shikimate pathway not only in weeds but in bacteria as well. It doesn't harm our cells, but it selectively kills beneficial bacteria in our guts (and in the soil), disrupting immune response. Glyphosate is also a mineral chelator (especially of magnesium). Food treated with RoundUp may appear nutritious upon dry ash testing, but the minerals will be bound and not available for absorption across the gut lining.

All I can tell you is to not become disheartened. You sound like a good, smart mother who has already helped her child immensely. Continue to try different protocols until you find something that works. Keep an open mind, and if something is not working, don't let the high profile doctors talk you into doing the same thing over and over and over again with no significant results. You will know when it is time to move on. Emst is right in that everything has to be addressed. Nutrition, toxins (pesticides, metal adjuvants) and detoxification capability, infection, inflammation. Everything matters. Please don't rule out possible chronic infections. Bartonella, babesia, mycoplasma and the other lyme "coinfections" can all be stand alone infections as well. Lyme does not need to be present for them to proliferate and effect immune status.

This may be perhaps over his head a bit, but I would have him read several of the articles on Stephanie Seneff's website pertaining to glyphosate/gluten/celiac/inflammation and autoimmune disease. Both my children understand the effects of glyphosate on the gut microbiome, and both are very happy that we are modifying our diets to avoid it. Glyphosate is most often found in GM and conventional grains and legumes where it is used either before planting, during plant growth or before harvest to produce uniform die-down. http://people.csail.mit.edu/seneff/ If he can't make it through the papers himself, sit down with him and explain it. Seneff says that it's not gluten that's the problem, it's the glyphosate.

Sorry, I know I may get in trouble for asking, but has your son ever been tested for bartonella? https://www.youtube.com/watch?v=7kG7BHlByeQ

Not only is this a PANDAS forum, it is also a PANS/Lyme forum. Infection with Lyme and several of the coinfections (bartonella, mycoplasma, viruses) can result in PANS/PANDAS symptoms. Strep does not need to be involved. Early on, before treatment for Lyme/co, DD13 (then 9) developed strep which exacerbated her PANS symptoms. Treatment for strep resolved those symptoms but as soon as PenVK was discontinued her symptoms returned. Another round of PenVK again resolved symptoms, but only for 4 days. On day 5 all of her PANS/PANDAS symptoms, along with a sore throat, returned while still on the antibiotic. Swab indicated the problem was not strep. Further investigation into both physical and psych symptoms on this forum lead me to seek help from a LLMD (Lyme Literate Medical Doctor) who tested DD through Igenex. She returned positive for bartonella; which is notorious for both supressing immune response (ie allowing other recurring infections) and for producing psych symptoms. www.ashdin.com/journals/jnp/235640.pdf http://www.personalconsult.com/posts/neurology-and-psychiatry-of-lyme-babesia-bartonella.html Sore throat is a symptom of bartonella, as is encephalitis which will produce symptoms of brain inflammation including light/sound sensitivities, sore/stiff neck, eye and ear pressure. I would not assume your issues are only caused by strep.

If you have access to a lyme doctor, please have him test for the common coinfections as well: Bartonella, babesia, ehrlichia, anaplasma, mycoplasma etc. Lyme does not have to be present for the coinfections to exist. Several of these, but especially bartonella and babesia (as well as lyme itself), can be immune suppressive. I think that if you have had good results with antivirals, you may want to further investigate those types of infections. I also think you are spot on about inflammation being the cause of the behaviour. The cause of the inflammation must be found and resolved. Stephen Buhner has a good book on Herbal Antivirals - it may be worth a read.

I have often told myself that if DD13 relapses, we will try this route. This site piqued my interest. Apparently Bravo sells suppositories which would be a little less invasive than the enema. Not sure if they are sold in the US. http://naturalsolutions.nz/bravo

The remedies were herbal, not homeopathic.

If you haven't had her tested for coinfections, I would do that. Lyme treatment won't necessarily treat the coinfections. DD13's ticcing was significantly correlated to the amount of bartonella die-off toxins produced during her treatment. Treatment for babesia produced herxing, but no ticcing. The ticcing you are seeing now may be due to her immune system producing the die-off. When I first approached our LLMD about PANS/PANDAS symptoms, she told me that bartonella infection was the cause and that by treating bartonella we would find resolution. We have.