sptcmom

Lymemom, thanks so much. I agree with your take on things. I am planning on atleast the CD 57 stricker panel.Im saving my resources for treatment. Will request Ds's LLMD for a quick peek at my results and I know she won't mind; so thats next week. Ironical you mention estrogen and breast health. I'm actually a breast cancer survivor. It was a freak thing at the age of 22 during class on differential diagnosis, we were learning and I did a self exam for the 1st time and found a tiny mass. Radiology revealed two tiny masses and my surgical chief was able to do lumpectomies, chemo and thats been that. Needed chemo once more in 2005 but so far so good.Even nursed DS and everything. I wonder if that was Lyme related so have it turn malignant so early in life.Who knows. I don't have any family history of malignancy at all. I do have Bartonella symptoms and I will have to wait to retest that one. This testing has me so confused. I want to see if I can request Dr Klinghardt to do a Lyme panel and co-infection panel testing on me during class or lunch breaks. Sounds so unprofessional of me but I'm willing to risk it and try.

here is the part about 39. Is this what you wanted? 39 kDa is from the inner part of the borrelia burgdorferi bacteria called the endocytoplasmic reticulum. It is the reddest flag of all the sixteen antibodies on the blot. Other bacteria that are like the Lyme bacteria (borrelia recurrentis, etc.) do not even have the genetics to code for this, much less produce it. The 39 appear to be unique to Lyme bacteria. It has even been suggested that a 39 by itself is enough to be a positive test.

Thank you all for your kindness. I would be lost without your support. Jodie

We've had a leaky gut syndrome as well as per our LLMD. A leaky gut allows toxins to recirculate back.Our LLMD recommends the Klinghardt protocol for gut issues and I totally agree with the choice. Identification of dietary allergies, heavy metals,biofilms,parasites, yeast and other opportunistic infections have to be addressed. Probiotics don't necessarily have to be high dose unless antibiotics are in play, then yes, very high probio as you already know. We use Quintessence, microsilica,freeze dried garlic, cilantro liquid, custom probiotics, A.D.P. for yeast, Sygest, Sydetox, detox baths,metabolic synergy multivit, bentonite clay,fermented fish oil and the Core for trace minerals. Fresh organic diet has been key for us. Raw fruits and raw green vegetables daily.Organic Green Superfoods chocolate smoothie powder that has all organic superfoods from all groups (greens, blues, reds, organges, blues and purples), diet high in turmeric and overall spices- basil, oregano, black pepper etc Water with an alkaline PH is very important. Gut issues cause increased acidity which is what causes malabsorption as per Dr Klinghardt's viewpoint and our LLMD.Increasing the Ph of water helps the osmosis process and propels the supplements into the cells. We use Eternal Springs New Zealand water or Fiji water is good too. Once a day I use electrolyte water from Biopure. Ds and I are both doing this protocol.

Thanks Wendy. Its a bit confusing because energetically I tested positive for Bartonella as per my Ds's LLMD. Couldn't do bloodwork back in october for financial reasons. Now having found a fantastic and reasonable local LLMD, my results are different than what I was expecting. Its still Lyme and some coinfections I guess. I did some initial provocation antibiotic treatment with Zith, herxed for a week with flu like symptoms but the mental fog lifted so well. I am looking forward to starting treatment. I think I also have several hormonal imbalances and my LLMD picked up on those too. After the initial congentital Bartonella diagnosis for DS I was shocked and stunned at realizing I gave this to him. I've been a bit depressed and just a bit lost in my own world since october trying to make sense of all the symptoms and life changes I've experienced since my toddler years.Its also been beyond words to finally find a reason. No matter what the label, its still a TBD and I need to get treated. I will go the holistic path after the initial essential antibiotics have been explored. Also dealing with yeast and leaky gut my LLMD tells me. Trying to find a way to do ART on myself! LOL. will ask Dr Klinghardt when I meet him in february. Im not doing any further testing unless absolutely needed. My LLMD is a seasoned practitioner and I think Im in good hands.

Found him! Dr Charles Crist of Missouri, LLMD Here is his website- very informative http://www.drcharlescrist.com/testing.htm

There is an LLMD called Dr Crist. I don't know where just found this dialogue while browsing. Here is the Bands info I found. 30 kDa is outer surface protein A, like the 31. It is in the medical literature that they are the same and I (Dr. Crist) have talked to one of the world experts on ospA and she said the 30 and 31 are the same. It is just like the 23,24,25 being the same outer surface protein but of different weights. This lab (Igenex) does not put two "**" in front of the 30 but it is a classic hallmark Lyme antibody with 97% correlation with antibiotics helping. (I will say this is the reason Dr. Crist said I should have a positive because of my #30 positive because it is the same as #31) 39 kDa is from the inner part of the borrelia burgdorferi bacteria called the endocytoplasmic reticulum. It is the reddest flag of all the sixteen antibodies on the blot. Other bacteria that are like the Lyme bacteria (borrelia recurrentis, etc.) do not even have the genetics to code for this, much less produce it. The 39 appear to be unique to Lyme bacteria. It has even been suggested that a 39 by itself is enough to be a positive test. 41 kDa is the flagella or tail or the Borrelia burgdorfri and that is how it moves around, by moving the flagella. It is the most common Lyme antibody of all. Even though different bacteria (E coli, etc) may have flagella and possibly cause a false positive test result, there is a 90 to 97% correlation with a 41 and antibiotics helping. 58 kDa is a heat shock protein that helps the Lyme bacteria survive fever. It was shown at the international Borreliosis conference held in Germany in 1999 to be a significant Lyme antibody. This lab (Igenex) does not put ** after it but it should not be ignored. 66 kDa is the second most common antibody found and is also heat shock protein. It is not given significance because different bacteria may produce it, even though it is the second most commonly found Borrelia burgdorferi antibody. 93 kDa is the DNA, genes, or genetic material of Borrelia burgdorferi. This lab (Igenex) considers the IgG 93 to be significant, but not the IgM antibodies. I (Dr. Crist) disagree with this. A 93 IgM is tightly associated with antibiotic responsiveness. I found answers to the bands I was looking for (58 and 66). The entire info is very informative.Dr Crist reads IND as = almost positive and treats as positive. So does my LLMD and DS's LLMDs and even without knowing who Dr Crist is, its good to see consensus. Jodie

here are my Igenex western blot results IgM Band 18+, Band 31 IND, Band 41 IND, Band 66 ++ IgG Band 31 IND, Band 34 IND, Band 39 IND, Band 41 +, Band 58 + Babesia Microti was negative both IgG and IgM Bartonella henselae and Bartonella quintana definite negative on both IgG and IgM Ehrlichia chaff IgG is equivocal 1:64 and IgM is negative EBV IgG is high as well.IgM is negative ANA screen negative I have my LLMD appt in a couple weeks. Any thoughts? Jodie

I am so sorry this happened to you. DS has had his shares of panic attacks in March of 2010. After the IVIG (hd) those resolved leaving us with mostly chronic underlying anxiety-fear syndrome. His first one that sent us to the ER as well was in the summer of 2006- even threw up the motrin the ER docs gave him but we didn't know then. Ds has Pandas plus Bartonella and we're treating both. I wish you goodluck, fortitude and prayers coming your way to help you thru. God Bless.

Hi Mary I can't attend but will surely get the CD from Bioresource if they have one ( I am a registered practitioner with them).I will ask Ann Corson too. She's speaking on German biological medicine which is majority Klinghardt I think so that should be interesting.Im seeing her next week for DS. If Wendy can go that would be awesome. Jodie

Thank you for posting this. What an amazingly well thought out and well written post.Well said. Our thoughts and prayers are with you. My story is that of 6 years of struggle with an Asperger's diagnosis, then PANDAS, IVIG etc etc - all temporary fixes. Now finally several wonderful moms on this forum guided me towards Lyme testing and DS and I are both positive, both herxing, ups and downs but overall improving and hopeful. Its a long haul as you know but I totally agree with you. There are several chronic infections, opportunistic and basic deep intracellular ones. It is very hard to identify these and as each layer peels off, you will see a healthier child emerge for real- no band-aids. Just my opinion and experience.Once the body regains an internal balance the immune system will reboot and function better.That is my belief. You can vent anytime. Im sure you will find support and empathy. Most of us have been there. Jodie

Some signs of yeast and /or mold sensitivity/toxicity are white coating on the tongue, itchy anal, perianal and vaginal areas, bloating, gas, sugar cravings,stinky BMs, sinus congestion, numbness and tingling etc. The one product that helps with yeast is Oil of oregano. I found that a pharmaceutical grade oil is the best and in my practice I use the product A.D.P. from Biotics Research. http://www.bioticsresearch.com/node/1654 Along with a good detox plan ofcourse, especially liver detox- soemthing like Livertone would be good addition.. Diflucan, etc are the medications that help as im sure you already know. Jodie

Thank you for posting that. What a wonderful read that was. I am so very happy for you. Jodie

Thanks Wendy.I am ok with high dose abx but this Zith thing has me stumped. I guess my dilemma is about Zith. I seem to get the feeling that most docs keep the dosage low and am not sure why. Most moms on this forum have always reported best results on a full dose abx. DS was on 2000 mgs combined with abx but Zith was never part of that combo. Now with our LLMD recommending Zith 250 mgs only I am a little confused. DS is doing better with 250 twice a day. Mostly want to find out if you guys have had any bad outcomes with Zith 250 twice a day or is it done commonly and seems ok as long as I keep up the probiotics. I don't want to go into C.diff or worse. Just wanted to get some reassurance that moms have used Zith 500mgs daily with comfort. Jodie

We did a complete Lyme panel and a complete coinfection panel thru Igenex and they all came back negative. The Bartonella was equivocal and was explored further by Dr. Jones and we had our answer.

No not as a cyst buster I don't think. Our LLMD hasn't mentioned that part yet. She treats in layers, one at a time and therefore has monthly follow ups.

Dr T at our last visit cautioned me again about streptococcus Thermophilus in most cheeses and yogurts. He suggested Emmi Yogurt. Its a Swiss yogurt and many supermarkets have it. If there is an existing virus and sinus infection then Zith will slow down the clearing of the sinus infection. I've been dealing with that thru three sinus infectios now. Ugh! yes, dosages would help us get a better idea of your situation. Jodie

Thanks for that tip Fixit. I was thinking of breaking the 2nd pill in half so meaning pulsing at 375/day for a week then back to 500/day for a week or maybe I can hold him at 375/day and herbs. Any info on Oil of Oregano? Can I do it with Zith? I mean spaced apart but it does help with candida overgrowth. Jodie

As many of you guys know DS9 now has PANDAS and Bartonella. We recently switched from augmentin 600ES bid+ Biaxin 250 bid + bactrim 240 bid TO Zith 250 once a day. I was VERY nervous about this. And jinxed myself I guess because we had THREE strep exposures in school and DS ramped up quite a bit with motor tics, mood libility, hyperactivity, exhaustion etc and I increased his Zith to 250 bid. I am doing about 750 billion to one trillion units of probiotics daily. DS is doing better overall but I am not very knowledgeable about zith doses for PANDAS kids since we've been on Augmentin thruout. Does zith 250 bid for a 52 lbs 9 year old sound crazy high? Should I go back to once a day? How about yeast? Can I do Oil of Oregano spaced a couple ours from the Zith? Does Oil of Oregano interact with Zith that anybody knows of? Please help Thanks so much Jodie

Actually its the RAW onions and garlic that are good for you. Many cultures use them raw in salads etc and that has a great antimicrobial effect. The cooked version I don't know much about. Garlic is usually recommended as the raw freeze dried version and works fine. Capsules are available, the organic ones are from Biopure. Dr. Klinghardt does recommend Garlic as antimicrobial.Cayenne and other hot peppers are considered great as well as is a ton of sea salt. Ayurvedic treatments recommend those four for antimicrobial too along with Indian Gooseberry extract (Chyawanprash) and Tulsi tea for great immune support.

DS started on Zithromax (switched abx)a month ago and has since then gone thru THREE sinus infections. A cold that went south with yellow-green nasal discharge- the hallmark of viral leading to superimposed bacterial infection. He's ramped up during those times as expected and have been managing on herbs and homeopathic. Did some research on Zith and found the following very interesting article. I will ask my LLMD about this. If Zith makes it harder to clear nasal strep, how the heck do I get around the PANDAS aspect f this Pandas-lyme equation I have going on with DS.I understand they're talking about streppneumo serotypes but nasal strep is nasal strep. Here it is The Journal of Infectious Diseases 2004;190:17621766 © 2004 by the Infectious Diseases Society of America. All rights reserved. 0022-1899/2004/19010-0007$15.00 DOI: 10.1086/425038 BRIEF REPORT Azithromycin Modulates Murine Immune Responses to Pneumococcal Conjugate Vaccine and Inhibits Nasal Clearance of Bacteria Aracelis D. Fernandez,1,2 Monica K. Elmore,1,a and Dennis W. Metzger1 1Center for Immunology and Microbial Disease and 2Department of Pediatrics, Albany Medical College, Albany, New York Abstract Macrolide antibiotics, including azithromycin, have been implicated in the modulation of host immune responses, independently of their antimicrobial properties. The present work was designed to study the effect that azithromycin has on protective humoral immune responses induced by a 7-valent, polysaccharide, pneumococcal conjugate vaccine (PCV7). By use of a murine vaccination/challenge model, it was found that inoculation with azithromycin led to significantly lower primary antibody responses, decreased recall proliferative responses, and, in nasal cavities, impaired clearance of Streptococcus pneumoniae serotype 14 from the nasal cavities. The results demonstrate that azithromycin can be inhibitory with regard to protective immune responsiveness. Full version: http://www.journals.uchicago.edu/doi/fu ... 086/425038

One of the first questions both our LLMDs ask is about new exposure to anything and new tick bites. So, yes, the neurotoxins will reemerge if there is undetected or new issues going on. Thats why most LLMDs and lyme support groups are huge on preventative lifestyle changes and environmental modifications to keep out the triggers and ticks. Undetected mold and other allergies can be a culprit. Its just a huge undertaking. I wish I could just build a little house on solid concrete, away from parks and woods, low tech, away from electric and cell towers and restart my life again. I am so tempted and its in my plans but is there even such a place anymore?

Quite a few big name LLMD (Klinghardt, J, C)suggest a provocation with a lyme protocol and retesting if they suspect Lyme. Dr Klinghardt infact specifically explains the immunosuppressant nature of the Lyme spirochete and suggests a couple months of ABX therapy before testing for the first time even since Lyme is first and foremost a clincial diagnosis. A good LLMD would never rely on only bloodwork. He also explains how the spirochete is able to evade the immune response since it moves like a corkscrew atleast a 1000 times faster than our whiteblood cells. As a result our immune system maynot get a good "bite" for a mapping of the bacterium. Combine this property with the cyst form of this microbe and you have many bands that come up IND or indeterminate where the test found some scraps of evidence but not enough for the band to light up.The most infected patients will many times turn up with false negatives and indeterminates. Thats why Dr K has a multipronged approach to a Lyme diagnosis- clincial exam, ART and finally bloodwork. Many big name and even some little name LLMDs are following the same format. SF mom, and Pacific mama to the best of my recollection, have wonderfully informative posts in the past on these issues. Please do evaluate your situation thoroughly before you proceed and Im sure you will. Jodie

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If all the underlying infections are treated then yes sleep improves for sure. DS had every 2.5 hours wake ups since 3 years of age and is now finally sleeping thru the night 3/7 days a week. What began as a PANDAs journey for us was acually so many underlying infections which are now finally being addressed by God's grace. We use Calmes Forte for kids, Valerian Calm by Herbs for kids and yes methyl cyanocobalamin is methylated B12 vitamin and helps with neurological support and stress. Too much B vitamins can cause an increase in energy. We also found that seriously reducing TV, video games, computer time also helps a lot. We banned all those after 6 PM with great results.With TV we restrictd DS to watching shows with live people and no cartoons which helps keep the craziness down. A calming detox bath also helps a lot esp with epsom salts, lavender and ginger essential oils few drops.