sf_mom

Christianmom: I am not sure on fecal PH range. We've only been focused on a 14 days sampling of first morning saliva (6.8 to 7.0 better too high then too low) and early evening urine (5.7 to 6.3 better too low than too high). You can also do blood PHs which is inconvenient and slightly different range depending on source. I do believe it is valuable to know how acidic or how alkaline an individuals is but it is only one aspect of wellness. Typically people with cancer will be very acidic... green diets, juicing are very popular to produce more alkaline environment potentially slowing malignant growth. However, being over alkaline is not good either so once again a balance range is recommended. Trying to lower PHs via detoxification can take a very long time. You need to be consistent and committed for at least two years or potentially longer and always best to have some guidance on the type of detox.

Trg Girl: Here are a couple of good books on the topic of Alakaline verses Acidic bodies. These books are food focused. So, what you eat that creates alkaline or acidic environment. We are approaching from the concept of not what you eat but how you assist the body detoxification to create normal PH... However, it is same theory that applies just a slightly different approach. We work with a nutritionist on this approach and not much is written on detoxification and PH balances. We found our children to be very acidic. We've been tracking PHs now for almost two years and they are normalizing. The take away for our family is that helping our children detox daily has been extremely beneficial and seems to have helped normalize their PHs. Many ways to go about approaching detox.... DAN's, Neuropaths, Naturalpaths, LLMDs seem to understand detox and methylation better than most other Dr.s. I also feel addressing the mineral/vitamin deficiencies our children have/had was equally as important as the detox'ing aspect. Alkalize or Die: Superior Health Through Proper Alkaline-Acid Balance The pH Miracle: Balance Your Diet, Reclaim Your Health

Hopefully I can explain this simply. We've been doing the hd B-12 for about 2 years now. Prior to LLMD. We started the hd B-12 because we were looking at it solely from a gut perspective. We felt resolving the gut issues would solve potentially a life time of continued illness. We've been tracking urine PHs and saliva PHs as a result. Our children's were way off and very acidic. If you can imagine a fish tank when the PH Balance is off... it breeds and harbors bacteria by being too alkaline or too acidic and the fish die. A proper PH Balance of a fish tank doesn't allow the bacteria to breed and allows the fish to thrive. We are applying the same concept to internal PHs and set out normalize PH balances of our children by repairing gut and detoxifying the body. The gut/stomach can technically not absorb much if its ill (for lack of better term). At that time we headed down the path of normalizing PHs, we stopped everything but the hd B-12 (which is generated from the gut apparently, hd probiotics, hd detox daily). It immediately helped especially the detox 'we think'. Sometimes older DS would come home from school and he'd be flairing with symptoms, we would give a cup of bentonite and symptoms would be much improved within hours. We were doing this all under the guidance of a nutritionist at the time. We were not looking at methylation pathways but detoxification and gut function. We bought into the hd B-12 because it helps with mood and regenerate nerve damage which we felt were both issues for our children. We only noticed improvement with the above 3 things so we stuck with it as a result. After one year heading down this path we started treating for Lyme. Since there was no ill effects our LLMD encouraged us to keep up with regimen. He then started to add stuff to lower histamines... My understanding was not from a methylation stand point but more of chronic infection typically equals high histamines. It is only over time and working with two LLMDs and adding stuff that we got to the point of treating what appears to be under methylation in our children. BUT, again this is all coming from the perspective of chronic infection potentially causing KPU and High Histamines not the reverse. Antibiotics will make the body more acidic and potentially wipe out 1/2 the good bacteria 'probiotics' you ingest. Even with those issues, our children's urine and salvia PHs are starting to normalize. Again, the goal is to create an internal environment unfriendly for bad bacteria to breed. I did happen to read that the internal PH of a TIC is 6.8 and that the BB has difficulty binding at PH levels below 6.5. We are targeting urine PHs of 5.7 to 6.3 better to be too low than too high. So, the theory makes sense. My answer is completely off topic but why we are using hd B-12 with potentially under methylated children. There are some really good books on the topic: Alkaline verses Acid body environments. Most approach PH balance by what we eat, we are approaching it from a perspective of proper detoxification. Once the gut repairs, PHs normalize the body will naturally lean towards a less acidic diet, technically healthier diet. Edit: As for anti-histamines added... we noticed our children to be a little calmer and of course slept better. We used D-Hist Jr, Benadryl and Ketotifen as anti-histamines. Apparently histamines are also generated from the gut. Ketotifen is a mast cell stabilizer and used often with ASD children due to over production of mast cells. John might have a better explanation on Ketotifen. We have weaned off Benadryl and now attempting to eliminate D Hist to see if there is a change in symptoms. Older DS continues to use Ketotifen.

It is my understanding that they will 'hopefully' be broadcasting the Plenary Session via the internet live again. Please watch for link via ILADS. I've posted the schedule below that does not include breakout sessions. Plenary Session - Concert Hall Friday, October 28, 2011 8:10-8:15am Welcome Robert C. Bransfield, MD, DLPAPA, President ILADS 8:15-8:30am Canadian/USA Alliance Bernard D. Raxlen, MD, Founding member of ILADS Moderator: Robert C. Bransfield, MD 8:30-9:00am Songbirds Disperse Lyme Disease Vector Ticks Across Canada — John D. Scott, BSc, MSc 9:00-9:30am Understanding Symptoms Related to Visual Dysfunction following a Tick-Borne Event — William V. Padula, OD, DPNAP, FAAO, FNORA 9:30am-10:00am Live imaging studies on vascular dissemination of the Lyme spirochete — George Chaconas, PhD 10:00-10:30am Networking Break Basics and Beyond Moderator: Robert C. Bransfield, MD 10:30-11:15am Borrelia Infections- diagnosis and treatment — Joseph J. Burrascano, Jr., MD 11:15-12:00pm Management of Ixodes scapularis bites. — Elizabeth Maloney, MD 12:00-1:30pm Garth Nicolson, PhD, — Luncheon speaker sponsored by Researched Nutritionals for all Registrants — New Research on Lipid Replacement Therapy to improve mitochondrial and membrane function in complex infections. Moderator: Carsten Nicolaus, MD, PhD 1:30pm-2:15pm Co-Infections — Christine Green, MD 2:15pm-3:00pm Babesiosis: Updates on Diagnosis and Treatment 2011, — Richard I. Horowitz, MD 3:00pm-3:30pm Networking Break 3:30pm-4:15pm Pregnancy and Tick-borne Diseases: Gestational Lyme — Charles Ray Jones, MD 4:15pm-5:00pm Ask the Expert — Joseph Jemsek, MD and Bernard Raxlen, MD 5:00pm ILADS Members only Meeting, 5:00pm Non-Member Professionals — Breakout C — Post Test and Discussion (Quebec Room) 6:00pm-7:30pm Meet and Greet Sponsored by CanLyme Saturday, October 29, 2011 Moderator: Andrea Gaito, MD 8:30am-9:00am Cutaneous Mimics, Don’t Be Fooled — Marcus Conant, MD 9:00am-9:15am The Qualitative and Quantitative Implications of an Inadequate Diagnostic Test for Lyme Disease Patients — Sarah Buchman 9:15am-9:30am Lyme disease and PANDAS — Hanna Rhee, MD 9:30am-10:00am The Updated ILADS Clinical Guidelines — Daniel J. Cameron, MD 10:00am-10:30am Networking Break Integrative Medicine Concert Hall Moderator: Steven Bock, MD 10:30am-11:15am Overview of Integrative Patient Care in Tick-Borne Diseases — Steven Bock, MD 11:15am-12:00pm Environmental Illness, Mold Exposure in Patients with Persistent Lyme — Lisa L. Nagy, MD 12:00pm-1:30pm Luncheon for all Registrants 1:30pm-2:15pm Food allergy, intolerance and candida — Morton Teich, MD 2:15pm-3:00pm New Ideas in Pain Management — Daniel Kinderlehrer, MD 3:00pm-3:30pm Networking Break 3:30pm-4:15pm The Role of Naturopathy and Herbs in Treatment of Tick-Borne Illness — Susan McCamish, ND 4:15pm-5:00pm Tick-borne Disease: Cases with a Functional Medicine Approach — Jeffrey Wulfman, MD 5:00pm-5:30pm Ask the experts panel 5:30pm-7:00pm Reception with the Exhibitors — Sponsored by IGeneX Sunday, October 30, 2011 Moderator: Samuel Shor, MD 8:30am-9:00am Improved detection of active Lyme in US & Europe Elizabeth — Valentine-Thon, PhD 9:00am-9:30am Killing Borrelia burgdorferi - Is it possible? — John Drulle, MD Memorial Lectureship — Eva Sapi, PhD 9:30am-10:00am Evidence Based Medicine: Evidence, Evidence Gaps and the Role of Stakeholders — Lorraine Johnson, JD, MBA 10:00am-10:30am Networking Break 10:30am-12pm Ask the Experts Panel — Robert Bransfield, MD; Daniel Cameron, MD; Joseph Jemsek, MD; Steven Bock, MD

LLM - John points you in a wonderful direction. Our LLMD ascribes to Amy Yasko protocol but this is what he states in Insight To Lyme Treatment We have not done MTHFR testing yet with any of our children, nor tested for ammonia levels. Put he has encourage the hd B-12 50,000 mcg per day and the hd C at 2,000 m.g. per day (Ester C Gummies). -Wendy

The parent who asked the question of this topic suffers from Chronic Lyme. The child's PANDAS treatment are not helping as hoped. This could easily be congenital Lyme. They will be "LUCKY" if Igenex provides any indication of LD. There are equally tragic co-infections with LD that can be passed congenitally. A child with congenital Lyme often does not make antibodies to the bacteria because the body does not recognize the bacteria's as foreign. Sometimes, these individuals may need to pursue alternative testing to determine if Lyme et al is involved. I should know. This is a serious illness with serious consequences if treated improperly. I am trying with all sincerity to get people to stop debunking the notion of Lyme et al's involved with PANDAS children and specific tests that are "helping" to determine if its an issue. A responsible LLMD will do further testing to determine if "Lyme is more likely or less likely". The information being passed along privately is really hurting some by created doubt. Some of these children are tragically positive for Bartonella and Babesia both known to cause OCD. These parents are still hanging their hat on the PANDAS treatments working. This is the sad state of affairs. Again, I will happily go away if everyone can get on board. This is not sarcastic nor passive aggressive on my part. I would like a truce on this topic and debate and to start helping to point people in the direction of "maybe" pursuing a treatment that will help when PANDAS treatments are not. I do not wish Lyme et al on any family. I do not want to be here posting either. I am sorry if you are annoyed by my posts. -Wendy

I take no offense. I want your help in only pointing people in a direction that "might" help. I speak my truth too. Edit: I will say it again. "It is those very boarder line Igenex results that have gotten many of us on the right path to recovery and you can call it whatever disease you like. It is true, Lyme may not be the right path for everyone but it just might help some" -Wendy

I was upset by the first response to this thread that implied Igenex was not a valid means of testing. I'll send you a PM providing some researcher name who doesn't like or believe Igenex testing. With probably some disclosure everyone is positive when tested by Igenex. I'm guessing on the PM message. You are potentially deterring individuals from pursuing the very necessary treatment they need to get their child well. Igenex is only one of the first pass indications that might get them to the right Dr. for better evaluation and hopefully a treatment that "might" work. You know I've got people contacting me (and other Lyme parents) that have been sitting on positive or boarder line Igenex results paralyzed by information from PANDAS parents. For many of these people the PANDAS treatments have not worked at all (no positive result from hdIVIG), they are told to hang on or do more PANDAS treatments by some of you privately. "Potentially" more time will be wasted for theses children's recovery and that is sad. I am absolutely perplexed by this position. For some, not all it is so much more than just strep. This has happened not just once or twice but many, many, many times and I am not the only one getting these PMs requesting help. There a lot of people that read these forum and do not post. I am personally suffering from severe forum fatigue. I can no longer handle the amount of time it takes to help these parents that are confused, scared and their kids are not getting well. I would love to move on. My family is getting well. I have a strong supportive community dealing with the same issues. BUT, when I get these message, I can not move on because it is child's well being. The Lyme et al issues should no longer be a debated. I am pleading with you to stop and be supportive of an alternative directions and testing whatever the direction rather than debunking specific tests that could potentially deter again. I PROMISE you I will be happy to leave the PANDAS forum, if you can get on board helping rather than debating. It is those very boarder line Igenex results that have gotten many of us on the right path to recovery and you can call it whatever you disease you like. It is true, Lyme may not be the right path for everyone but it just might help some. I did post the third party story because I thought it was warranted for those of you to understand how tragic this might be for a CHILD truly with Lyme. AND, you are upset by that... I get that but that is just one of many tragic stories of what can happen when Lyme is not properly diagnosed. I see the children in wheel chairs. Please, Please, Please stop. Suspend belief, start helping and will happily leave the PANDAS forum. Its a promise. -Wendy Edit: Additionally if any of you would like to continue the debate with me personally I ask that you do it privately... You are welcome to PM me with your frustrations or even call me. BUT, I would like a truce on the topic and once again request the thread be locked.

I was talking in the context of Lyme. Not PANDAS. Why would this upset you? You are having success with PANDAS treatment? You believe in your choice of treatment? My post was not intended for you. I like to request the thread be locked. This discussion is no longer helpful to the forum and it makes us ALL look bad. -Wendy

Making a newcomers with positive "lyme" results feel it is o.k. to move forward with month long steroids tapers is potentially tragic too! COULD the possibilty exist that PANDAS kids cross react with Lyme tests??? Possibly, but there are some very good test that don't look at antibodies that are more conclusive if Lyme is an issue. My point in an early post. Igenex testing is only an indicator. Could the possibility exist that not all PANDAS kids will see 100% remission of symptoms WITHOUT it then being Lyme?? Yes obviously possible... see my prior post. Perhaps the strep is wrapped up in biofilms and releasing low level toxins.. hence very low level symptoms... We don't know all the answer yet. Have you ever supported a strictly PANDAS diagnosis? Yes, of course. Our experience is that our LLMD was very conservative and didn't immediately announce it was Lyme. As you know, we did a ton of testing. However, our LLMD did say initially to me 'Lyme or not' he thought he could help turn down our son's hype-immune response. I do know not all LLMD are created equal and can understand why you might have that impression. I have also heard the opposite where they are too quick to say its not Lyme and missed proper diagnoses. -Wendy

Please try to raise the level of discourse. Mistreated Lyme is tragic. The story I posted is one of many. You would only need to sit in our LLMDs office for one hour to see how tragic it can be for some individuals. Please try to support the fact that not everyone has seen the successes you have had with PANDAS treatment. I understand you don't like what I have to say. You can put me on ignore. BUT, you are right I will continue to post when I feel it relevant and how I feel is relevant. Just like you will. So, lets move on and start doing what is really important and that is to help others to have successful treatments for their children too. Sometimes that will mean moving beyond PANDAS and immune modulating treatments. As for my supposed disclaimer that "I do not believe it all to be Lyme". It is true, I do not believe it all to be Lyme. There are many 'we' have helped go beyond PANDAS treatment that did not have Lyme but perhaps worms, staph, mycoplasma, strep, huge viral component, KPU. These people know me a little bit better than you and know when I make that statement like that it is not just a passive aggressive on my part. -Wendy

Pandas 16: I am sorry you do not see my other post. It clearly states I do not think it is all Lyme and there are ways to build a case that makes Lyme 'more likely or less likely' outside of just testing via Igenex. I actually believe Igenex testing can be very misleading to some. Two of my children were clearly serologically negative and still had Lyme. Regardless this thread has taken a turn for the worst. I do not appreciate the personal attacks regarding our family's story being relevant to the topic and owed an apology. But, that is my perspective. I often do not like some of the discussion about steroid use over on Lyme forum but I never attack those PANDAS moms posting their stories because it has worked to get their children well. There no longer needs to be the debate if Lyme is issue for many PANDAS children. There are far too many children now being successfully treated for Lyme et al that were once being treated for PANDAS. You can call it whatever you like but the PANDAS Dr. would be well severed to pay attention to some of the protocol's used by LLMDs ensure those with just PANDAS or other chronic infections have sustained recoveries i.e. detox, biofilm treatments, testing for mineral deficiencies, viral component, etc. As you know..... and I know you did the research. Strep has an L form and it exist in Biofilms along with many other bacteria's. As for DNA swapping, I'll let you do the research on that. I couldn't agree with this statement more "If your child isn't improving on one treatment regimen under one diagnosis, keep testing and searching until you find the treatment(s) that work best. Nobody really knows all the answers yet, including the "medical experts" specializing in both PANDAS and Lyme". -Wendy

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Similar experience on more than one occasion. DD was either rotated down or off antibiotics and each time she regressed within a week. Completely different child with aggression, mood liability, anxiety, language abilities and extremely emotional. The rate of relapse can be very indicative of how they are infected. With Bartonella relapse is typically 1 to 2 weeks, Babesia is 2 to 3 weeks, Lyme is 3 to 4 weeks. Of course these cycles are also dependent on how well the individual is recovered. Since your child is new Lyme treatment and the fact that he is diagnosed with Bartonella it is not surprising to that you are noticing an increase in symptoms already. It has taken 6 to 10 weeks to regain progress once we noticed regressions. -Wendy

Philamom: I definitely thought of you when reading this particular information. I stubbled upon it when reading about 'Xifaxan'... I think liver toxicity is something all our kids deal with due to chronic infection and now the obvious over lap of symptoms as it relates to the liver. I had no idea it was tied to ammonia levels and the brain though. Regardless it just reconfirms to me the need to be on some type of detox regimen especially for the liver. Apo-Hepat is something we added when older DSs liver enzymes where climbing. We also started to treatment for Babesia at the same time. Everything has since resolved. -Wendy

Something else to add..... did a little further investigation.

The milder slow progressing symptoms are what interest me as it relates to the liver being overloaded by toxins. "Hepatic encephalopathy is a worsening of brain function that occurs when the liver is no longer able to remove toxic substances in the blood" Symptoms many begin slowly and gradually worsen, or they may begin suddenly and be severe from the start. Symptoms may be mild at first. Family members or caregivers may notice that the patient has: Breath with a musty or sweet odor Change in sleep patterns Changes in thinking Confusion that is mild Forgetfulness Mental fogginess Personality or mood changes Poor concentration Poor judgment Worsening of handwriting or loss of other small hand movements More severe symptoms may include: Abnormal movements or shaking of hands or arms Agitation, excitement, or seizures (occur rarely) Disorientation Drowsiness or confusion Inappropriate behavior or severe personality changes Slurred speech Slowed or sluggish movement Reading this reconfirms the need to detox while treating Lyme et al. We are currently using different detoxes for various areas of the body or organs... most recent Apo-HEPAT for the liver. -Wendy

Tampicc, Thank you!!!! Always great to find new resources. The one thing that struck me is the relationship between KPU and enzymes. Both my daughter and myself have very low digestive enzymes. -Wendy

I think the Omnicef/Azithro is a great starter combo for Bartonella and will be effective while you wait for LLMD. She might herx when Azithro is added so make sure you document any obvious increase in symptoms for future LLMD appointment. When you start Azithro count as day 1. You 'might' be able to pick up on herx cycle within the first 30 days which will provide comfort when symptoms flair. LLMD might eventually up current dosage for both Omnicef/Azithro. Yes an LLMD would consider her co-infection results as positive. It is very unlikely she does not have Lyme given the positive co-infections and borderline positive Lyme results. She has some very specific bands present even though they are IND. It is my understanding that only 10% of those positive for Bartonella will NOT also have Lyme. More likely that the Bartonella is suppressing immune response for Lyme. Most that treat for Bartonella will have 'converted' Lyme results the further they are along in treatment. Sometimes it is important to retest for co-infections 9 months to 1 year mark because some are finding positive results For Babesia, RMSF, Rickettsiae, etc later once the Bartonella is treated effectively. -Wendy

LLM has made some great detox recommendations. We've used many on the list she provided at various times. One Detox that I'd like to add to the list is Clarity K Detox from Beyond Balance specifically formulated for children with chronic infections... all encompassing. http://www.beyondbalanceinc.com/products Additionally, have Dr. B or your future LLMD run the allergen test for penicillin to confirm true allergy if you haven't already. I believe its offered by Labcorp. We too thought our son was allergic only to find later he wasn't when we ran the test. We most likely had a herx response when we used pencillin based antibiotics previously. It is also important to be on combo'd antibiotics a.s.a.p. when Lyme is involved. Omnicef is one of those antibiotics when taken as single use and chronic infection is involved that can make you vulnerable to C-dif.... per one of our LLMDs. You would have obvious symptoms so NO need to worry about C-dif but would focus on adding the additional antibiotic. Our son is 57 pounds, on Omnicef 600 m.g./Azithro 375 m.g/Mepron for Lyme et al I am sure you'll get some great PMs regarding Dr.'s in your area. I am more versed in Dr. on west coast. EDIT: Omnicef/Azithro is a great antibiotic combo to treat Bartonella. Bartonella is typically addressed first. Ehrlichiosis it one of the co-infections that should resolve along with Lyme. -Wendy

Andrea, So glad you are seeing progress!!!!!! It will be rocky but over time those improvements should stick. We have had high eosiniphil count in the past while on a single use antibiotic and it wasn't from rifampin. I would continue to follow for your Dr. but I do not 'think' it is anything to be too concerned about. Since we share the same Dr., I have a little perspective on how well he understands he adverse effects of antibiotics. We were taken off Rifampin when my older DS spiked really high fever and vomited during his Lyme herx cycle. It was just too much for him at the time.... his body didn't like it. We were also taken off Biaxin when his eyes started to yellow and his liver enzymes climbed. BUT, some of those symptoms are from specific infection like Babesia and not specifically from the antibiotic. Looking forward to hearing continued improvement. Wendy

Great resource, thanks!!!!!! We definitely noticed improvement within 48 hours of supplementing for older DS. Our children are not fully biologically related thanks ART (assisted reproductive technologies). All children were carried by me in-utero. All three have congenital Lyme with similar co-infections to me. For our family, I tend to believe the KPU was acquired due to the chronic infection. -Wendy

Unraveling KPU for our son was only one piece of the puzzle. Treatment has definitely helped but it hasn't fully resolved symptoms either. If there are obvious signs of KPU then I'd definitely run the test, treat depending on results and see if you can't get some improvement. Its not an either/or type of situation with the Lyme/Bartonella/KPU and whatever else will crops up for your son throughout treatment process. It will all need to be addressed. For us, testing/treating for viruses was as significant as treating for KPU. There are a few that work with both Integrative or Naturopaths along side their LLMDs and LLMDs that provide an integrative perspective. If you feel appropriate, definitely check out in advance of LLMD visit in Dec. About the cracked lips... often the lips are cracked in the corners of the mouth. Our son had only chapped lips 'not cracked corners'. I also remember thinking my son will be better when those chapped lips are resolved!!!!! I have definitely noticed chapped lips coming and going with Herx responses but over time they have improved a great deal. Edit: Just read your recent post and I'm sure you'll get some good perspective on different Dr.'s philosophies in your area. -Wendy