SSS

Yes, I am currently on it- don't know if this will help, but I do 'like' it- liked everything I read about it, building ones own immune system. I am taking a tincture, along with some other herbs, in a little pure pomegranate juice, knock it back, masks the flavor.

I recently tried Align, here is my take: Not great. It has a lower count of actual probiotic, is only 1 strain, and added non healthy fillers in the capsule. And take it from me, it does not make more frequent bowel movements. Natural Calm (powder mix drink, magnesium citrate) does, and tastes good. If you are desperate to get a good probiotic in him, and if he's on antibiotics, I would be, how about mixing an open capsule of one into a LITTLE bit of lower sugar ice cream, teaspoon of Nutella, or something like that.

*whew* This board is painful lately. Okay, first of all, in a famous PANDAS/PANS presentation, done by Dr. T, a few years back, actually talks about 'exorcist rage' This is not being literally possessed by the devil. This is a poor, sick child, inflamed, brain on fire, in desperate need of help. I have been here with my child. I have been alone at home, scared to my bones. Sometimes, and this sounds crazy, it is getting on the floor, crawling over, whispering love, gentle, 'it's okay, it's okay' wrapping arms around the fighting child, kissing their head, holding close, stroking, whispering over and over love, that has broken it- let my child release, and cry her soul out. Breaks my heart to even write this. I don't know your child's treatment history, but ibuprofen around the clock, IVIG, antibiotics, lemon balm, diet, hang in there--------- Don't know if this helps. Sounds maybe off the wall. But the love technique, all it encompasses, has broken that rage for us more than once.

Also, sugar and carb cravings indicate yeast overgrowth- and giving in and keep eating it creates a vicious cycle. Are you on a good probiotic? If you can get the yeast down, the sugar and carb cravings stop.

I was on Celexa (Citalopram) for 5 years, it caused no weight gain. I have been off all antidepressants since January this year- feels good. Well, sometimes, lol.

Yes, I'll be honest, I found the new excerpt depressing. Yet, compelling. Factual. Up to date. REAL. Scary. Hopeful in a sense. She and her family are well. But, because it's so personal to me and my family, depressing- especially the financial realities, and all that we've lost. But, it is valuable, really critical, information about understanding Lyme disease. I LOVE the way she writes.

If you have Kindle, or Apple books, you may now purchase Pamela Weintraub's update/new chapter (112 pages) If you or your family are dealing with Lyme disease, and have never read this book, buying the book now includes this update. One of the most informative, educational, gripping, detailed scientifically, along with personal family experience, Lyme disease books ever written, IMO.

LaurenK, I believe the birth control is for you, right, an adult, since you mention IVIG treatments for yourself. How about a paragard IUD. No hormones, no fuss, no muss, extremely effective.

I'm so sorry, I wasn't trying to minimize. She hasn't had IVIG yet, right? What about the Dr. T Anna just went to for her child, who will now receive Pex? Her poor brain is in overdrive/ inflamed. Just throwing some feedback out there--- Good thoughts your way for healing....

If what you are saying is true, she actually only sleeps an hour a night, please get her into a sleep specialist type program, which should be covered by your insurance. Something serious is going on, and she will never heal anything if she cannot sleep AT ALL. How do you handle it as her mother? Example: she's given a dose of Klonopin or a sleeping pill, do you shut the entire house down at 10 pm, no lights, no electronics, she has to stay in her bed, perhaps calming music or sounds?

Nervous mommy, if you click into your profile, look up your content- you have posted this topic 3 times before, and have had a lot of caring, supportive feedback, with great suggestions. Not sure if you got the boards mixed up, but I'm sorry you are still frightened--- hope you can find some moments of joy and peace with your new baby---- I know treatment is hard, hang in there--

Rowingmom, I already used a LOT of Houttonyia last year- and Levaquin, A-Bart, Beyond Balance Bart formula, Cipro and Rifampin rounds, more I can't think of now. I treated very aggressive, and reaped improvements. It wasn't easy, as we know, going through treatment is hard. Buhner actually says in his new book about Bartonella: The core protocol consists of 1) cytokine disruption, 2) organ protection, 3) immune enhancement and support-- a distant fourth is antibacterial assault. For antibacterial assault, I included what he recommends; Sida Acuta and Isatis, 2 herbs I've never done before- also using them at the same time as his recommendations outlined for steps 1-3. Frankly, not even sure it's Bartonella creeping back up on me, but wanted to give this a try in case, I am so drawn to it.

Yes, I am A LOT better. In fact, I'm late for my workout :-) So quick: I'm off antidepressants, calmer, more at peace, no more daily headaches, etc. etc.

I am an adult without PANS, but a positive Bartonella Henselae test. This is my favorite (most accurate for me) Bartonella symptom list. I believe your dd had a positive test at one point, too? The Bartonella Checklist Increasing Suspicion of This Emerging Stealth Infection 1. Insomnia [if profound fatigue this might not apply]. 2. Current anxiety that was not present at age ten. 3. Current anxiety or depression not present at twenty years old. 4. Knee-jerk emotional responses worse than past decades and worsening. 5. Unusual discomfort on the soles of your feet 6. A temperature under 98.3 in a sick person. A temperature under 99.0 if Lyme disease or Babesia is present 7. Puffy tissue on insole or any part of ankles 8. Depression 9. Depression that is not fully controlled. [improvement of mood is not successful in depression treatment]. 10. Gingivitis or bleeding during flossing 11. Anxiety is poorly controlled with average dosing 12. Depression is poorly controlled by reasonable medication trials 13. Sleep medicines work poorly at routine dosing 14. Rage worse with time 15. Irritability worse with time 16. IL-6 is very low 17. IL-1B is very low 18. TNF-a is in lower 10% of normal range 19. Any skin markings or growths greater than most people 20. Blood vessels or color on skin greater than most people 21. Impatience > in personality when compared to ten years ago. [in a child, any can be any irritability] 22. Cursing or hostile speech that is worse over time. 23. One or more medical problems with unclear cause(s) and idiopathic. 24. Red papules of any size. 25. Skin tags including ones removed by dermatologist or shaved off. 26. Unusual blood vessels of any kind including inside organs such as bladder or intestinal walls 27. Any skin finding in excess of 95% of most humans 28. Skin findings showing increased blood vessels of any size 29. Skin findings showing increased tissue formation that is increased over the flatness of surface skin. 30. Skin showing blood vessels that are too large or too many for the location of the blood vessels, e.g., surface thigh and calf skin with very thick surface blood vessels. Or legs, upper arms or shoulders have explosions of many fine blood vessels. 31. Increased addictions that are more resistant to recovery than average. 32. Increased impulsivity in contrast to past years or past decades. 33. Burning skin sensations [this may have many causes]. 34. Itching without a clear cause and which is hard to control and remove 35. Skin erosion without a clear cause such as a fire or chemical burn. 36. Minor cuts or scratches which heal slowly. 37. After a surgery, you heal very slowly. 38. You have two tick or flea infections with two positive tick or flea borne viruses, bacteria or protozoa. [bartonella has >30 published species in public genetic databases and has more vectors than possibly any infection in the world. Therefore, the presence of other infections such as tick borne viruses, bacteria or protozoa, should raise suspicion. 39. Exposure to cats and dogs in excess of very incidental rare contact. 40. The patients mother is suspicious for Bartonella based on newer direct and indirect testing. 41. A sibling, father, spouse of child with any tick or flea-borne infection who shared a residence or vacation with proximity to brush. 42. Exposure to outdoor environments with brush, wild grasses, wild streams, golf courses or woods. 43. Outdoor expose in locations such as brush, wild grasses, wild streams or woods which happened without the use of DEET or without very high off- gassing essential oils on exposed skin areas. 44. The outdoor exposures such as brush, wild grasses, wild streams or woods which occurred without permethrin on shoes, socks and all clothing. 45. Clear exposure to lice, fleas or ticks. [bartonella is carried by a huge number of carriers, but for now, the % that carry Bartonella is not known. Further, the capacity to detect all new species in the vectors or in humans infected, does not exist or is not routinely available in direct testing of all human infectious Bartonella organisms in both large or specialty labs]. 46. Stretch marks in eccentric locations, e.g., arms, upper side under armpit, around armpit or on the back. 47. Stretch marks filled with red, pink, purple or dark blue in color. (BELOW IS BABESIA, I DON'T HAVE TIME TO EDIT IT OUT SS) Please note that an unknown percentage of people infected have no symptoms, at least for many years. This checklist is not meant to be used as a definitive tool to diagnose Babesia. I would suggest that no definitive 100% or even 98% sensitive tool exists. My In summary, how can any certain Babesia position exist, when new species that infect humans are routinely emerging, and for which there is not even a direct testregardless of sensitivity? Please circle (consider) any symptom that applies: 1) I react to any derivative of Artemisia (Sweet Wormwood). *Note: the reaction does not need to last more than a day and any immediate stomachaches or loose stool do not apply. 2) I react to a malaria drug. (It requires profound wisdom for a clinician to distinguish between a side effect and a reaction caused by an effective Babesia treatment. For example, insomnia caused by the synthetic drug Larium is meaningless, since Larium has this as a side effect in uninfected patients. But fatigue and a severe headache resulting from a teaspoon of Mepron on day one are very suspicious symptoms for a known protozoan like Babesia or Malaria or other similar infections that are newly identified genetically). 3) Headaches with no clear cause 4) Headaches that are hard to control 5) Weight gain in clear excess of diet and exercise 6) Weight loss with reasonable eating and average exercise 7) Fatigue in excess of that experienced by most people in the same age range 8) Fatigue that produces need for sleep in excess of 8 ½ hours daily 9) Fatigue with ongoing insomnia [consider the possibility of both Bartonella and Babesia in this case] 10) Absolute Eosinophils in the low or high range [this is not definitive in any manner, but is a useful tool] 11) A percentage of Eosinophils in low range or high normal range 12) Very high Eosinophils [rare with Babesia, but other findings suggest other possible causes] 13) Mood changes with any herb or drug that kills protozoa like Babesia, with the exception of Larium 14) Shortness of breath [no clear asthma, pneumonia, COPD or other common cause] 15) Swelling in limbs and other parts of body 16) Night sweats 17) Excessive perspiration during normal daily activity 18) Hot flashes in a normal temperature room 19) 26) A normal or low VEGF lab result in the presence of Bartonella 27) A TNF-a in excess of 1.0 in the presence of Bartonella 28) A CD57 or CD57/8 level that drops right after the start of a Babesia treatment, or which falls steadily with ongoing treatment 29) Pets, farm animals or local relatives with ANY tick borne virus, bacteria or protozoa 30) Excess breast tissue in a man or boy 31) Any decreased in appetite 32) Severe chest wall pains 33) Random stabbing pains 34) Any enhanced sense: sensitivity to light, touch, smells or sound 35) Family, friends or others report you look tired or foggy 36) You have received blood from another person 37) Muscle aches or joint aches/pain, especially worse after use of a protozoa killing medicine such as proquanil, Alinia, ativoquone, clindamycin, or one of many new emerging progressive natural medicine or synthetic malaria drug treatments 38) Nausea or vomiting 39) Hemolytic anemia with lab positive blood products in your urine [this is not a routine finding] 40) Dark urine [this is rarer than some articles intimate] 41) An enlarged liver (which sits under your right rib cage) 42) An enlarged spleen (under your left rib cage). This is falsely believed to be a common human sign; actually it is very rare. 43) A yellow hue on eyes, hands and skin (jaundice) with no other clear cause. 44) Sexual contact is a debated form of communication of some tick and flea borne infections. I have no position. Isolation in a body fluid does not mean that is a route to spread the infection. If you and your healer feel this is a possible route of infection, has the patient had intimate contact with the sharing of body fluids with an infected person? 45) The patients mother is suspected of having or has been diagnosed with Babesia, Ehrlichia, Rocky Mountain Spotted Fever, Anaplasma, Lyme or Bartonella based on newer direct and indirect testing or clinical signs and symptoms. 46) A sibling, father, spouse or child with any tick borne infection who shared a residence or vacation with proximity to brush (wooded area). 47) Exposure to outdoor environments with brush, wild grasses, wild streams, golf courses or woods in excess of ten minutes in any location lived or visited since the age of eighteen months of age. 48) Outdoor exposure in locations such as brush, wild grasses, wild streams or woods which took place without the use of DEET or without very high off-gassing essential oils on exposed skin areas. 49) Enlarged lymph nodes (but also in Lyme, Bartonella, other infections, high inflammation, tumors and other diseases) 50) After Babesia treatment with clear protozoa killing agents used also to kill malaria, IL-6 moves from very low to an increased level. 51) After Babesia treatment with clear protozoa killing agents used also to kill malaria, IL-1B moves from very low to an increased level. 52) Brain troubles such as trouble keeping up with past routine life demands, lateness due to trouble with motivation and organization, and trouble with concentration [Any of these would be a positive] 53) Memory troubles [this is not specific to one infection or one disease process. For example, exposure to indoor molds biological chemicals can decrease memory within an hour depending on the species mix] 54) Profound psychiatric illnesses [this is not limited to a single infection] 55) Daytime sleep urgency despite nighttime sleep 56) Waves of generalized itching [this infection and inflammation sign is not limited just to Babesia]. 57) Spike of a fever over 100.5 after a possible tick bite. 58) Insomnia after taking a malaria killing herb or drug 59) Anxiety and/or depression after taking a malaria killing herb or drug 60) Rage or temporary personality regression right after use of a malaria killing herb or medication 61) Excess fat in lower belly area that is in excess of lifestyle and activity. 62) Lumps or other types of tissue collection with no clear cause [Other tick and flea-borne infections can also cause these growths] 63) One or more medical problems with unclear cause(s), with changing or contradictory diagnoses, or which are eventually called idiopathic. 64) Psychiatric label(s) given for all of your troubles or a child or relatives troubles when clear medical problems exist as shown by abnormal laboratory results (only if wide testing is done which includes inflammation and anti-inflammation chemicals, hormones, nutrient levels, and other immune system chemicals). 65) You have two tick or flea infections with two positive tick or flea borne viruses, bacteria or protozoa. The presence of other infections such as tick borne viruses or bacteria raises suspicion of a Babesia infection. 66) Your clinician understands the use of indirect testing and feels your lab pattern is suggestive of the presence of Babesia. This involves more than an ECP spike. 67) Since direct testing for Babesia by any lab misses many human species and is of variable reliability, and the common presence of Bartonella suppresses some antibody tests, a positive or indeterminate is likely a positive. Have you had an indeterminate or borderline Babesia result? 68) You have neighbors living near you with a tick or flea infection diagnosis. 69) Your pet(s) or family animals of any type, e.g., horses, have had outdoor exposures to areas such as brush, wild grasses, wild streams or woods. If the pets were animals such as dogs, which can be given anti-tick and flea treatments, were these animals always on schedule with these treatments? 70) Have you had clear exposure to ticks in your current or past homes as an adult? 71) Have you had clear exposure to ticks during vacations or other travels? A WORD ON MANUAL BLOOD EXAMINATIONS No blood smear will be positive for Babesia unless you have a profoundly massive number of infected red blood cells, which is rare. Therefore, no blood smear should be considered negative unless it has been examined for thirty minutes. While a 2-3 minute exam of large white blood cells may be fully sufficient to identify cancers and other diseases, a search for over eighty Babesia red blood cell presentations under 1000x, as found in my Hematology Forms of Babesia book, requires at least thirty minutes, which requires private contracting with a microbiologist or pathologist or a favor from a lab director. Please appreciate that stains help define whether a substance is what it appears to be. Babesia is an emerging infection. Any certainty claims or criticism about Babesia positions without reading at least parts of 1,500 articles is a premature certainty. Again, new Babesia species are emerging every one to four months. Indeed, even a new protozoan has been found that looks like Babesia under a high powered microscope. But when it is genetically sequenced it is not Babesia or immature malaria, which can look similar. It is a new infection. Therefore, since this is a new emerging illness, this scale is meant to merely increase awareness of Babesia, an infection that can kill patients of any age. Writings in the past fifteen years have either seen Babesia as a mere co-infection or a footnote of a spirochete infection [Lyme]. Anything that can hide for a couple of decades, and then possibly kill you with a clot or by other means, is not a casual infection. Babesia cure claims should be made with the use of indirect testing birthed from extracts of superior journals read over five years. Currently, these many indirect well-established lab test patterns are not used or understood by immensely busy and smart clinicians working full-time. While this is fully understandable, I hope it may change in the coming decade.

I am about to start a Buhner protocol (based on his new book) for Bartonella- lately, I've been wondering if it's creeping back up, and I was drawn to and intrigued by his new book about it, how he explains how the infection itself (and mycoplasma, which I don't have) affect different cells, parts of the body, and if we can halt these actions, the infection itself cannot thrive/ it dies out. Anyway, I have the recommended supplements (L-arginine, ECGC, Quercetin, Rhodila, etc. etc.) and a few new other herbs- I did not include houttonyia, since I already did that heavily last year with Zhang's HH2 caps, and Nutrimedix version of Houttonyia as well. I found those very effective, BTW. I'm doing a: let's see what happens, if Bart really is creeping back up, what this feels like. Tiny treasures, the herbs can be powerful. I think it may be best to be guided by a professional, unless you really educate yourself....

Hi- this is an old thread of mine, back from 2011. Thank you-

We got to a point (after a long time, and multiple, high dose combinations) where antibiotics didn't make a difference anymore- no longer *worked* or gave any more gains. That does not mean we haven't had to continue healing the gut work, supplements for inflammation, adrenal health work (myself), etc.

We did the test (when it was $400) because I wanted to know if it was indeed PANS, or 'just' autism spectrum disorder. We were working with a DAN! (Defeat Autism Now) Dr. at the time....and he treated our PANS part- (first runs of antibiotics, then 2 IVIG's). We had done some gut healing and chelation before we found PANS. Then, found Lyme and co. Long road $$$

RowingMom and I posted at the same time :-)

And THIS is why I'm afraid to do that test. I'm sorry Kara. I don't know what to say, except there is a part of me that wonders/believes: Lyme may never be fully eradicated, and the idea is to beat down the infection enough that the immune system can take over, controlling it. But then....what if there is an immune stressor in the future? Puberty? After having a baby? Where I am at, we have seen 2 LLMD's, and both were adament that they do not treat without symptoms. Now....another theory: If one is chronically infected for years unknown, or was born with these infections, impairing development since infancy, and treatment then ensues and is very aggressive, we have improvements, but, can we really expect 100% all the way? I'm just not sure, either. My dd8 and myself are both off antibiotics, but still need support through supplements, sometimes herbs, sometimes medication.

Sending you support, healing, love-- hang in there-----

I'm sorry, I did not remember/ realize there already had been 2 recent IVIG's. Can you call the lab and speak to them about this test? I would think for the price of the test, and your high CAM result, after 2 IVIG's, I would want to hear some feedback.

If she likes to read, she could read Pamela Weintraub 'Cure Unknown' which is a fascinating book, educational, mind expanding. Page turner. Whether she believes in PANS, and she might not even have PANS, she has Lyme disease, which nearly never travels alone, so I'd wager Bartonella is with it, based on your description, which is hard to show on a positive test. How do I know? Because I'm an adult who tested positive for both Lyme and Bart. I do not have PANS. Her life can get sooo much better, I promise, if she treats these infections. Also, there are many supplements and things she can do to ease the herx and deal with the die off-- Sending good thoughts--- There is a way out.

Well, I'm no expert, but if this new Cam test is the same one she did out of the University (and pretty darn sure it is) Cam K of 209 is the highest I've seen/ heard of --- Ours was 175, and I thought that was extremely high. I would think a high dose IVIG would be in order to get the inflammation down.

Hello--- I'm sorry you are dealing with this, I understand how overwhelming it can all be. I think the best thing a caregiver or patient can do is start to educate themselves about Lyme disease- 2 excellent books are: The Beginners Guide to Lyme Disease by Nicole McFadzean, N.D (forward by Joseph J. Burrascano M.D) The Lyme Disease Solution by Kenneth B. Singleton M.D. Also, this board has valuable history- if you use the search function, you may find information about 'herxing' suggestions to help...