sf_mom

Eljomom: Igenex does test for Bartonella. Fry Labs also does a blood smear for Bartonella... I like Fry because "sometimes" you'll be able to pick up on the presences of biofilm in result. Might be other labs as well but Dr. dependent which labs they prefer. Beesknees: I haven't heard anything about 'Envita' but if I lived in the Pheonix area it would definitely be something I'd explore. There is a few things they state about their treatment process that I like... anti-fungals, anti-viral and immune boosting protocols.

I was administered steroids while pregnant with twins and unknowingly had Lyme Disease at the time. I ended up having daily epileptic seizures and extremely high blood pressure. The Dr.s had no idea what was wrong me. The steroid shots were used to calm a full body rash that they believed to be PUPPS. My twins ended up needing to be delivered in hopes 'my bad state' would resolve. Both children now have congenital Lyme Disease and are recovering. They are 4 years of age. My older son who is 7 1/2 also has congenital Lyme and was administered a five day steroid burst two years ago with positive results that did not last. He too had a sudden on-set of PANDAS like symptoms and treated for PANDAS one year and had 3 hdIVIGs. The strep titers resolved during that timeframe. He has not had a hdIVIG treatment in 20 months, he remains fairly close to full recovery minus herx response with Lyme treatment. Lyme treatment has definitely not been a rabbit hole but life changing for our entire family. I too have heard of many children that were thought to have PANDAS but truly have chronic infection responding well to a month long steroid bursts. I do not think it can rule in or out the chronic infection verses auto-immune aspect. I recommend at least speaking with Dr. versed in treating Lyme prior to administering steroids so you can make a well informed decision on the benefits or potential complications. All our children were negative for Lyme Disease via Igenex antibody testing but unraveled Lyme via other means of testing i.e. DNA match. Here is a good video, only 7 minutes long and explains how the inflammation process occurs with Lyme Disease.

A big warm hug and I sympathize with your feeling of being overwhelmed. You are at the beginning of a long journey for your family but I do believe you'll see improvement for both your husband and son. First off, you are very fortunate to know what you are dealing with "Chronic Infection with the potential of PANDAS/autoimmunity"... Many don't have the test results you do. You are also fortunate to be close to two wonderful Dr.'s specializing in Lyme and PANDAS. I am sorry but I don't recognize your son's current Lyme Dr. Your son's inability to focus and concentrate since starting antibiotics is most likely a herxheimer's response from die-off. Our family has experienced many of these herxs and sometimes the increase in symptoms can last a long time. You'll need a lot of support in understanding the "worse before better concept" involved with chronic infection. Most recently, our younger son had a 5 month long herxheimer response when we rotated him to the antibiotic of Rifampin. We saw the return of OCD, rage behavior, potty training regression, etc. We pushed through this difficult period and about month ago we saw huge improvement in symptoms again. I am sharing our experience only to provide some perspective that things can temporarily appear worse with very little improvement for a long time... So, hang in there. You'll soon get a feel for Dr. J and his treatment style with your DH and know if he is a good match for your son. He is experienced in treating a similar set of symptoms. He also is not opposed to the use of IVIG when appropriate in the course of treatment. He is seeing a few from the forum and I can direct you to those individuals privately. Many on the Lyme forum, that originally thought PANDAS or have a PANDAS component and later confirmed Lyme have tried hdIVIG and the results have been mixed. None of us are sure why it has been helpful to some and why it has not for others. There are couple of theories: One is the hdIVIG acts like one huge antibiotic and the massive die-off creates an extended herxheimer's response making "some" individuals appear worse for a very long time, the other is the hdIVIG suppresses the bodies "own" immune response while the donor antibodies take over to fight infection temporarily making "some" appear to be better until donor antibodies expire. Similar to PowPow it maybe more about timing of the IVIG/PEX and I would go with a Dr. that is experienced in both treatments if possible when chronic infection is involved or build a team of Dr.s. PEX has also been used to treat Babesia with success. Babesia is a RBC parasite and with PEX you are clearing out the bad stuff/blood for good stuff. However, you are also eliminating good antibodies probably along with bad antibodies and because the Lyme/co-infection is most likely still in the soft tissue and/or organs you would still need to contend with those particular infections post PEX. Anyway, my best recommendation is find some great Dr.'s. Please take the time to watch documentary 'Under Our Skin' if you haven't already. Dr. J is featured in many parts of the movie. -Wendy

All my children have congenital Lyme Disease. My older DS had a sudden on-set after a strep related illness. All our children and myself are either confirmed positive or suspected of having Lyme, Bartonella, Babesia, Viral component 'several', Immune Deficiencies and KPU 'mineral deficiency'. We caught the Lyme early for our twins, initially on antibiotics at 2 to 2 1/2 years of age and started treatment for Lyme at 3 1/2 years of age. Our DD had one word at 2 1/2. She just started preschool with age appropriate language at 4... She still has a slight slur in speech but has made huge advances with her language skills. It is my understanding that selective mutism can be a symptom of both illnesses, PANDAS and Lyme. There are at least a couple of individuals on this forum that have had great success in treating for PANDAS... You should be able to find some medical journal's on line regarding the implications of selective mutism when Lyme is involved. My older son had only one symptom of Babesia when we started treatment a 'dry unproductive cough'. That particular symptom could be an indication of Bartonella or Babesia. With this particular child he comes up negative for Babesia and Bartonella when antibody testing is preformed but shows positive via other means of testing of his stool and ART. My other son's only indication of Babesia were low WBC and night sweats when being treated for LD in addition to positive Babesia FISH. Sometimes unfortunately with Babesia you can have very few symptoms as an indication. If you have a positive PCR or FISH test result for Babesia those are fairly accurate forms of testing when positive. "The PCR assay detects DNA and can be performed on fresh or archived clinical specimens. The FISH assay is performed on thin blood smears and detects the ribosomal RNA of Babesia (thereby indicating active infection)." "If it were me" I'd treat the chronic infection but not rule out the possibility of PANDAS treatment. It can take a good 10 months to treat Babesia. Many see tremendous improvement after the first four months of treatment as the RBC get replaced (120 days). However, treatment responsiveness truly depends on the individual unique set of issues. It is my understanding that those with IgA deficiencies are known to have a much harder time recovering from Lyme and take much longer to respond to treatment. So important to know some of those underlying issues. I believe Dr. J in DC has treated children with similar symptoms and wondering if he is your LLMD since you are in the vicinity? -Wendy

To answer your original question: Girlfriends son was on Azithro/Biaxin combo to treat Bartonella initially. He was eventually switched to Biaxin/Cipro. After one year of treatment his bloodwork is negative 'again' for Bartonella but still positive via ART and is currently on Azitro/Omnicef. I am sorry but don't remember dosages. He is or was positive for Bartonella, Ehrlichiosis via bloodwork and IND for Lyme. He is or was positive in the last six months via ART for Lyme, Babesia, Bartonella and recently Mycoplasma 'possibly new infection due to recent illness'. He was positive for Strep but that resolved over 1 1/2 years ago with PANDAS treatment. BUT, that is not to say strep won't be a problem in the future again. These new exposures can really rattle progress until the individual rebuilds immunity and infection is at manageable levels. We too had a recent bacterial exposure in our household. 3 individuals got sick with similar symptoms, one individual 'the nanny' recovered within 48 hours with proper antibiotics. Its been over a month and we are still problem solving DD situation. We went from feeling like she was almost recovered with only the Livedo rash as obvious symptom to a completely different child. Unfortunately, we had lowered antibiotics at time of exposure because we felt she was doing so well. She was sick within 4 days of lowering. What was working prior to exposure, stopped working and are in the process of problem solving with LLMD. She seems to be pulling out of it in the last 48 hours due to change in antibiotics and refocus on Bartonella 'surprise, surprise'... We go back to Dr. in two weeks to further problem solve the situation based on her response. -Wendy Edit: Exposure consisted of high fever for two days, sore throat and eventually a cough. Older PANDAS/Lyme DS responded normally to illness but he was on Azithro/Omnicef/Mepron at time. We home cultured him and he was negative. Nanny and younger DD were not cultured. We are not sure if it was Myco, Staph, Strep, Chlamydia pneumoniae or some other bacterial infections. We have another ART session with older DS soon so we will see if there is any residual infection.

So sorry for your loss..... a warm heartfelt hug as you work your way though this rough period. Your motherly instincts have always been good in guiding your treatment choices for DS. Remember that no matter what a specific Dr. is telling you. I often feel it is the Dr. or Dr's that end up the finish line of recovery that will get our families accolades. But truly, it has been all Dr's and a lot of other families experiences that have helped every step of the way. I have been back and forth many times with extended herx's and I am always amazed at what is truly left to treat. I know you'll be back to full recovery soon for DS. Prayers, Wendy

I am not sure about your question but I definitely wait a week and see if the itchiness continues. Does anything else itch? Often the bottom of my feet will itch. Does she have a white coating on her tongue? If her tongue has a white coating, other areas itch and the itchiness is still there in a week I definitely pursue yeast further. Again, a comprehensive stool sample is the best way to check for yeast. Some of the side benefits of doing comprehensive stool analysis: You'd understand how good her gut is holding up with all the antibiotic use.... it will give you the amount of good bacteria. You'll understand if she requires any digestive enzymes. You'll know if she has any type of parasite in her intestine. "Sometimes" they are able to pick up Babesia this way. The result would typically read unknown parasite for Babesia but at least you'd have a clue to investigate further. We had a positive "unknown parasite" with older DS and we also did other confirmatory testing with ART. I've attached a PDF of the results sheet for Metametrix. You can order test kit and have pediatrician sign off on request. http://www.metametrix.com/files/test-menu/sample-reports/GI-Effects-GI-Function-SR.pdf -Wendy

Momaine: I have/had a yeast problem... 4+. I am on daily Nystatin to treat. My understanding is once the yeast sets in it can take months to clear. A couple of things you might consider to contend with the ongoing yeast outside of prescription are the following. We did the following for me: lowered antibiotic regimen, I started taking Lauricidin along with the Nystatin and I also take hd probiotics. Those three things in addition to Nystatin have helped tremendously. Consider lowering antibiotic regimen with Dr.: Yeast can sometimes be the result of die-off "yeast may cannibalize dying Borrelia and that yeast is not always the result of antibiotic therapy alone" http://betterhealthguy.com/joomla/blog/216-ilads-2010-conference-takeaways Take daily Lauricidin: "A number of fungi, yeast, and protozoa are also inactivated or killed by monolaurin. The fungi include several species of ringworm (Isaacs et al 1991). The yeast reported to be affected is Candida albicans (Isaacs et al 1991). The protozoan parasite Giardia lamblia is killed by monoglycerides from hydrolyzed human milk (Hemell et al 1986, Reiner et al 1986, Crouch et al 1991, Isaacs et al 1991)." http://www.oasisadvancedwellness.com/products/lauridicin.html Take a prebiotic, EpiCor: Good yeast to combat bad: http://www.vrp.com/immune-system/epicor-novel-immune-system-enhancer-strengthens-microbial-and-mutagenic-defense Older DS took Epicor and he has never had a yeast issue. Take or use Garlic: Your DD liver issues might also be an indication of Babesia. I am positive you have already ran co-infection panel but... I have one child that continued to come up serologically negative for Babesia. He had only one symptom and then liver enzymes started to climb. His brother is confirmed positive and also an 'indication' he might have Babesia too. We were very worried about the possibility so we finally pursued ART muscle testing to confirm Babesia or not. Sure enough, he immediately came up positive. We started treatment about 5 weeks ago and there has been a dynamic shift in his recovery. He had only one symptom of Babesia infrequent 'dry cough' that has flaired as a herx response. Since you are dealing with TBI, I thought I mention the possibility that Babesia is the source of climbing liver enzymes. A comprehensive stool analysis is good way to test for yeast and determine overall gut health. You can have a herxheimer response from yeast die-off. Just do a google search for die-off candida. Red spots around vaginal area could still be a virus 'non sexually transmitted'. I would talk with LLMD about potential anti-viral protocol or testing. You can do a basic viral panel via Labcorp. You can pick up viruses via IVIG.... I am sorry, I know you don't want to hear that information as the IVIGs have been extremely helpful to your daughter's overall successful recovery. This particular information was provided by our LLMD throughout our discussions on IVIG treatments and the filtering process. So, please take this information as one Dr.'s perspective only and maybe just a reminder to check for potential viruses. -Wendy

We use Bactroban Nasal ointment to protect and treat MACRONS for all of our children. Its an ointment, we swab every couple of days or when we know the kids will be in social setting with other potentially sick individuals. This is just part of our LLMD protocol with our children. We've been using since starting Lyme Treatment. We did not test specifically for MACRONS. My husband uses the BEG Spray. He too thinks its a little tough on nasal cavity. We did not test for MARCONS but are using the BEG Spray to potentially deal with some of his lingering infections that might be in nasal cavity... The chronic cough he had since last Jan. is 90% improved since starting the spray.

All three of our children were negative for Lyme via Igenex antibody testing. We did not discover Lyme was our children's true issue until we did provocation and looked for the DNA match in their urine. Lyme loves the bladder and why it is 'sometimes' simple to pick up die-off in the urine. Frequent urination had been an ongoing symptom for one of our children. However, when the Lyme isn't present in the bladder the result may be falsely negative. Even though our younger son was negative for Lyme via Igenex, he was positive for co-infections of Bartonella and Babesia via antibody testing. We have since done further confirmatory testing via alternative methods through our LLMD which includes: blood smears, ART muscle testing, supportive blood work, etc. There is a variety of ways to be properly evaluated for chronic infection but unfortunately this requires the guidance of a Dr. versed in testing or treating for these infections. Igenex is good first pass at testing for the presence of Lyme because it does provide a wider range of Lyme specific bands or proteins over the standard WB. However, results might only give you an indication and would still take further evaluation by an LLMD. In our case, the Igenex antibody testing gave us no indication of Lyme. -Wendy

I guess I'm glad I missed the post. We are heading out for our first family vacation in over two years 'since sudden-onset' tomorrow morning. Its about time.... our family is finally feeling confident enough to start enjoying life again. My focus needs to be on my kids excitement, packing and not this particular discussion on the forum. Pandas16; Wishing you all the best with your treatment choices and resolution of PANDAS symptoms. -Wendy

Tpotter: Your welcome... I don't know if I would have been a believer either if it hadn't been for a couple of mom's positive experience with treatment for their families and insistence on testing. Like you, our entire family is now working towards recovery. I think the message of chronic infection is finally out there and for that I am grateful!

Me too, feeling much better. The fog has lifted and I have my energy back. I also went down hill after pregnancy. Pregnancy is a known trigger. Our LLMD did my test initially as courtesy (he was already seeing my older son at time)..... once the results came back positive I had to make an official appointment. Our LLMD typically recommends not testing in advance of appointment due to preference of types of tests and labs used. -Wendy

No, I actually wasn't referencing you.... The history of the debate goes much further back then your arrival on the forum. I happened to be beating a loud drum of chronic infection and not so eloquently at times on the PANDAS forum 'repeatedly'. It caused a lot of criticism both on and off forum and even lost a couple friends over my postings. BUT, we managed to help a couple children along the way that were deemed 'just mentally ill' so it was worth it. I think the message is finally out there but I still cringe by what appears to be a tight definition of PANDAS by some... Which excludes or is missing proper diagnoses in a lot of kids. Like LLM I prefer a more inclusive name of PANS. A little off topic... Laura: I too started KPU treatment 3 weeks ago. I had a little rough patch between weeks 1 to 2 and hope that is it. All of our kids are trending better since starting! Our younger son had the toughest time with just 1 pill per day and it took a good six weeks to see improvement. Older DS has definitely had the most notable improvements and the least amount of response at 4 pills a day. It was very worth treating. -Wendy

Laura, Not upset at all... Your well thought out perspective and well written posts always make me smile. I cringe from the war wounds of debate regarding PANDAS/Lyme. Sometimes I feel like us mother's collectively understand this better than many of the Dr.'s. I have a problem and 'maybe' it is with the word PANDAS..... for many it is so much more than just strep. AND, there is always that ringing reminder in my ear of a noted nay sayer of PANDAS, also a Dr. K telling me on the phone Strep would never cause these symptoms. I argued with that particular Dr. for over an hour on the phone and boy was I wrong when it came to our family. Hopefully, that gives you a little insight for my need to cringe. By the way, congrats on the 30 chlorella pills... I'm still at 20 pills a day myself. -Wendy

Laura, I have had so many thoughts since reading your post late last night. I've got to say.... I'm so jaded from the last couple of years and have a hard time trusting anyone Dr.'s perspective fully. If it wasn't for this forum and other people's experience our family would not be where we are today. It is the combined efforts and 1,000s of hours spent by all of parents trying to figure this out for their children to has pushed 'our' recovery along to this point. I actually cringed when I read the comments on PANDAS in the attached link. I am still angry at the denial by some for the lack or inappropriate testing required in advance of a true PANDAS diagnoses. I unfortunately breeze by many of the comments in the attached link perhaps wrongly or rightly feeling some points don't apply to our situation. I guess I draw the line at drinking my own urine.... but perhaps I will be convinced otherwise in the future if we stop having success with treatment. I mean flying off to visit with 'John of God' has crossed my mind and do not rule it out as a option in a moment of desperation (kinda kidding but not really). If there is one thing I've learned in this process.... it is to trust my mother's and other mother's instincts over anything a Dr. has said or claimed. I do like the bullet point information provided by BHG and summary of what these Dr.'s have said at a particular conference. In contrast some of the lengthy medical articles are hard to understand and leave my head spinning. However, I do believe some of the information is presented from an understanding of these Dr.'s philosophies without the back drop of explanation. You would have to know that Dr. K does not often resort to antibiotics use in his treatment process of Lyme to understands why he might say something like "classical homeopathy never works". He is at the forefront of homepathy and treatment of Lyme... literally changing the way most view and treat the disease. We could spend hours just parsing his views. Anyway, BHG has been invaluable resource for us and even helped with understanding/directing us with my husband's health. We are fortunate to have him as a neighbor. He is bookmarked on my computer and potentially many Dr.'s as a reference point for treatment. Even potentially driving or shaping views on MCIDS similar to this forum for PANDAS. THANK GOODNESS FOR THE INTERNET. -Wendy

My children have Lyme, Bartonella and Babesia as well. These infections can be treated and huge progress can be made over time for your child. I would not trust anyone not experienced in treating TBI to provide perspective on results. It is obvious the Dr. at Kaiser is not experienced in treating TBI nor does he understand brevity of your son's symptoms, number of infections or how to treat properly. These are very serious infections and both can cause psychiatric disorders independently. It is most like the combo of infection that drives your son's current symptoms of rage, OCD and TICs. You will need to address all three infections to get him well. -Wendy

"The hardest Lyme patients to treat are those on psychiatric medications. Klonopin is among the worst for making treatment more difficult" "Microbes exist in communities. Lyme surrounds itself with Staph, Strep, Mycoplasma, and molds" "Symptoms are rarely caused by the Lyme spirochete. Joint pain is often the result of Rickettsia, Mycoplasma, or Clostridia. Gut issues are often related to parasites or Babesia. Borrelia alters the immune system and opens the door for other infections but does not generally create significant symptoms itself" http://betterhealthguy.com/joomla/blog/242-a-deep-look-beyond-lyme

I have had an ongoing yeast problem of 4+. I find the more aggressive my Dr. is with treatment the worse it gets. Some believe it is a bi-product of die-off " yeast may cannibalize dying Borrelia and that yeast is not always the result of antibiotic therapy alone" http://betterhealthguy.com/joomla/blog/216-ilads-2010-conference-takeaways. My yeast problem seems to be better finally. I no longer have white tongue or itchy soles of my feet. A couple of things that I think have helped is daily Nystatin, hd probiotics, Lauricidin, lowering of antibiotic regimen. I also understand Coconut water can help. For older DS we have used couple of things: hd probiotics all different strains, Ketotifen to help rebuild mucus lining wall so yeast can not easily attach, Epicor which is a prebiotic that ferments good yeast. -Wendy

S & S you can find some great Bartonella photos on Dr. J's website. www.drjoneskids.com. Go to Bartonella rashes and double click on one of the images and about 95 images will pop up. Towards the end are some images of the purple squiggly rashes related to Bartonella. CandKRich: The 28 and 34 day period is actually the Lyme growth cycle. When we start a new antibiotic I always mark my calendar as day 1. If you track the increase of symptoms you might be able to pick up on some cycles. For us, tracking cycles have been helpful to determine herx's verses new exposures. I have OFTEN noticed an increase in symptoms right on day 30. We are day 28 since starting Mepron for older DS and I expect to see something in the next couple of days. -Wendy

We used Collodial Silver nasal and throat spray with all kids in the family. http://www.iherb.com/Sovereign-Silver-Bio-Active-Colloidal-Silver-Hydrosol-Vertical-Spray-Top-10-ppm-2-fl-oz-60-ml/4862?at=0 http://www.iherb.com/Sovereign-Silver-Bio-Active-Colloidal-Silver-Hydrosol-Spray-10-ppm-2-fl-oz-60-ml/4864?at=0 -Wendy

When my children herx they often did not have traditional flu like symptoms. For one child all we saw was the return of OCD and rages that lasted approximately 5 months. Those symptoms recently resolved when we rotated antibiotics For another child he would get blips of AD/HD symptoms. He was talkative and had manic moments. They were so obvious that even DH recognizes it as a herx. From what you describe the rash does seem like Bartonella. Sometimes the rashes come and go within a 24 to 48 hour period. I would take a photo for your next LLMD appointment. The headaches can also be Bartonella. I am curious if you started the Azith + Bactrim combo about 28 to 34 days ago? If so its most likely a herx and hopefully you'll see him trend a little better soon. -Wendy

That is interesting since he has biofilm's and his symptoms have improved.

Wow, I bet you are right.... I should add we treated older DS for Biofilms with Enzymes with EDTA from Jan 2011 until this past June. When we started, he appeared to herx and the dark circles under his eyes returned along with chapped lips..... he was very pale and withdrawn looking. Recently we stopped the biofilm protocol to treat KPU due to mineral deficiencies.... since treating almost immediately the dark circles under his eyes and chapped lips improve and his full face has returned. We hope to revisit biofilm treatment in the near future once we are further into KPU treatment. -Wendy

Opps