sf_mom

We too use Ibuprofin on a periodic basis but not regularly due to potential GI issues as well. One of my remaining and most predominate symptoms has been fatigue. Every time we treat more aggressively the fatigue sets back in on a daily basis. The most helpful thing I've done for fatigue has been treating oxidative stress. I drink the follow detox drink 2 times a day and it can keep me feeling great "most" days. 2 oz Aloe Vera Juice: Aloe Life 'Gold' has the best concentration: Aloe is anti-inflammatory and provides many needed minerals and vitamins 'zinc, Bs, etc' 18 Drops of Chlorophyll: Chloroxygen: Regenerates and oxygenates red blood cells: http://www.herbsetc.com/Topics/PDF/chloro_bro_07.pdf 2 Scoops of Vitamineral Green by Health Force: All green foods that helps with inflammation and normalizing PHs: http://www.healthforce.com/shop?page=shop.product_details&flypage=garden_flypage.tpl&product_id=6&category_id=1 Juice of one lemon: Detoxing 14 oz of water Most recently I've added 2000 m.g. daily of MSM to the drink and I am still herx'ing fairly intensely from it. It is a natural sulphur and it too helps with oxidative stress by permeating the cell walls. Other things MSM will help with are allergies, parasites (especially interested in treating nemotodes), constipation and stomach acidity, detoxing of heavy metals. Here is some additional information on MSM http://www.msm-info.com/. I recommend adding MSM once the helpful benefits of the detox drink are recognized. If MSM is added go low and slow.... I am experiencing all kinds of rashes, headaches, mood liability and fatigue from herx reaction. However, I feel the long term benefits MSM will far out weigh the herx response. When I am not experiencing herx symptoms I feel fantastic. Most days I am able to function on aggressive antibiotic therapies that includes Azithro, Omnicef, Mepron, 4 Herbal remedies, etc. so its worth pushing through on the rough days/times. I use the Jarrow MSM and all the above including MSM can be purchased at Whole Foods. Minimally, I would highly recommend looking into any natural anti-inflammatory over regular Ibuprofin use.

As you know our family has Lyme et al. Our younger son has Lyme, Bartonella, Babesia, HHV6, Coxsackies and heart related issues since 5 1/2 months old. It could easily be Coxsackies (Foot and Mouth) as it can cause fatigue, paralysis and heart related issues. It is an opportunistic virus and will easily pick on individuals with a compromised immune system. Our children's titers have been raised since they were originally tested almost 2 years ago. They have been on a rotation anti-virals (some specifically for Coxsackies) since and only recently showed physical signs of this particular virus. http://www.safewater.org/PDFS/resourcesknowthefacts/Coxsakie_B.pdf

Our younger DD had similar low immune deficiencies at the age of 2 1/2 and 3 years of age plus many other abnormal labs including low RBC, Low WBC, etc (much, much lower levels at 13 for IgG 3 and 200s for IgG 1). We spoke with Dr. K (PANDAS Dr.), went to Immunology at Stanford Children Hospital and saw three different Dr.'s there that ran numerous tests, reviewed all labs with LLMD and have continued to track immune deficiencies. None of these Dr.'s felt IVIg was an option at this time. Both Dr. K and Stanford Dr.'s wanted to follow her labs for at least one year before diagnosing anything like selective immune deficiency. Our LLMD felt once she was properly treated for chronic infection these numbers would normalize. At last check (one year ago) we saw improvement but still out of normal range. She is still being treated for chronic infections as well as many other issues including methylation, gut issues, biofilms, viruses, etc. and continues to make slow and steady progress. We are hopeful IVIg will not be necessary for full recovery.

Here is an interesting article on how the antibodies shift to a Th1 immune response in late stage lyme. It might help you to understand why your son's response is weak and hardly present on Igenex results. "Although antiborrelial antibodies can be detected in most patients with late disease, in some patients, the antibody responses are weak, delayed, or in rare cases, absent [1415 16]. Immune response in patients with late Lyme borreliosis is shifted toward the Th1 side [17]." http://www.jleukbio.org/content/82/1/33.full

Seems like the rifampin was treating something! With the foot pain and the improvements on rifampin I would also suspect bartonella (rifampin is very good for bartonella). His CD57 is very low. Have you run any additional test for Lyme as it is not clear in your post? Are you seeing an LLMD? I am a little surprised to see you on a single use antibiotic of Augmentin to treat Lyme as it is not typical. Sometimes individuals when on the right antibiotic or combo of antibiotics you can see improvements fairly rapidly. The reverse is also true depending on how you are infected and if you are not on the right antibiotic/combo you can see an increase in symptoms as quickly as 2 or 3 days (Bartonella), 1 to 2 weeks (Babesia) and 28 to 34 days (Lyme) when stopping or switching antibiotics like you did. These timelines are growth cycles and potential herx cycles. However, when on the right combo of antibiotics there can also be an extended herx lasting months... i.e. my son was TIC free and shortly after starting a specific combo of antibiotics some tics resurfaced lasting at least 6 months however we saw unexpected improvements in other areas over the same timeframe knowing the antibiotics were working. It took a very long time for tics to settle this particular time but they did and we had an overall improved baseline. I think you need to speak with your Dr. and see if you can't back to rifampin immediately. I suspect you'll witness similar improvements again when restarting.

We've used a number of very helpful natural antibiotics and anti-virals along side traditional antibiotics with success. I couple of things that might help and fairly easy from a general perspective. XClear Nasal Spray or O2-Zap (ozonated olive oil paste) for resistant infections in the nose. Anti-virals: Andrographis, Engystol, Viragraphis, Olive Leaf Extract, Lomatium, A-C Bryon White, A-V Bryon White... We've mostly rotated antiviral's approximately every 12 weeks with sometimes a combo of herbs. The herbs we used for bacterial infections are mostly specific to infections/parasite. As a general anti-bacterial some like colloidal silver. If you are interested in going this route I would definitely reach out to a NP or an integrative Dr. that understands chronic infections/viruses and how to treat.

My son had aneurysm at 5 1/2 months old. At the time they diagnosed Kawasaki's and hdIVIG helped him tremendously.... and creased the progression of disease we thought. At about 2 1/2 years old we started to recognize OCD, rage behavior and other health related issues due to older brothers diagnoses of PANDAS/PANS and eventually Lyme et al. He now has a PVC as well. He too was eventually diagnoses with congenital Lyme, Bartonella, Babesia, Coxsackies and other chronic infections/viruses. My understanding is Lyme can pick on certain organs and it can absolutely reside in the heart. Just goggle Heart and Lyme Disease. For some that have not been so fortunate to figure out Lyme there is biopsied heart tissue positive for BB. Coxsackie can also cause heart related issues so we have a double whammy going on here. We are concerned but cautiously optimistic as we are in the care of a very good LLMD that understands the potential heart related issues. At this time, we do NOT believe we will have to resort to IV antibiotics nor IVIG treatments. I too would consider seeing an LLMD and minimally maybe testing for Coxsackies with your PANS Dr. If you haven't tested for co-infections (Bartonella, Babesia, RMSF, etc) you might consider that as well.

I would also try XClear Nasal Spray.... which is xylitol and good at dealing with Strep. It can be purchased at Whole Foods. See attached. http://bioessence.com/xlearnasalspraywithxylitolandsaline.aspx

I think the hardest part of this journey was figuring out when something 'wasn't' working. For us and many others, it also took investigating all of the things outlined above and understanding the notion of chronic infection. It appears from the climbing mycoplasma titers you are minimally dealing with that as a chronic infection. I think finding the best possible Dr. for your area experienced at treating mycoplasma would be a good start. Our entire family is impacted by mycoplasma as well as other chronic infections and we use a combination of antibiotics and herbs to deal with this particular infection. The mycoplasma could also be wrapped up in biofilms making it almost impossible to treat without addressing the issue. I would also recommend doing a phone consult with Dr. K in Chicago to get his experience with multiple hdIVIG. You might get a clearer understanding or different perspective as to why it is not helping. Wishing you all the best.. but don't give up there are options.

It is my understanding Lyme likes to hide on the Dendritic cells of the immune system. Sometimes when antibiotics are stopped, the Lyme resurfaces off these cells. http://en.wikipedia.org/wiki/Dendritic_cell Here is a study that some what explains what is going on and how you can be a weak antibody responder. http://www.jleukbio.org/content/82/1/33.full In order to help you make some decisions on how to proceed I would do two things. Make an appointment with an LLMD (as you know wait lists can be long) and while you wait for appointment do the live blood culture with your current Dr. It is my understanding relapses can be horrific and sometimes worse than original presentation. These dendritic cells are in the central nervous system and once the lyme peels off it heads straight to the brain. At least that is how it was explained to me..... I am repeating science that is above my head so I apologize if I'm getting it slightly wrong. I've loved a lot of Dr.'s since we started this journey but have also recognized I needed to move on from some of these Dr.s at a certain point. I not sure if that is the case yet for you.. but I would definitely be very cautious and take all the necessary steps to make an informed decision on how to proceed. -Wendy

I wouldn't exceed 15 drops 2 x day. We do put the drops in juice for the twins and it still works well. By the way, sorry your friends daughter with fatigue ended up positive for Lyme. Thankfully, we have some great choices in the Bay Area to treat. Wishing her all the best with her recovery.

Yes you would check for all three in Northern CA: BB, Bartonella and Babesia. Samento is a good, inexpensive option to combo with Azithro and would work just fine for Lyme. BUT, I will caution starting low and slow.. as it is powerful. I would check for Hermsii if there where extreme symptoms, known tick bite and none of the above were positive.

Oh I get concerns.... Concrete camps is my new motto but you are right we can't keep them in a bubble either. Unfortunately doxycyline is the first line of defense for newly bitten individuals. I know Mom2Alex's DH was bitten in San Mateo on a concrete path. They had the tick tested and it was positive for BB but not positive for co-infections of Bartonella and Babesia. He went on Doxy for one month but seemed to have some minor potential symptoms and then was given another month of doxy . They were relieved to know the tick didn't have co-infections. The Hermsii is coming out of Monterey. I would minimally treat her clothes as Philamom suggested. It will give you piece of mind... The Azithro can help with Lyme and would definitely consider upping her to 500 m.g. while away. Samento is a great herb for Lyme and you could use it when she returns from camp. Its as powerful as any antibiotic I've tried. You would build very slowly (1 drop per day) to 15 drops x 2 day in water for maybe a month or two. You can buy Samento at http://www.nutramedix.com/ Hope that helps, Wendy

EAMom, The Bay Area Lyme Fund is just finishing up a tick study for our area. They do not have results in yet but keep a look out for it as they collected ticks along some of the more trafficked walking path like Windy Hill and Portola Valley, etc. There is also a cluster Borrelia Hermsii in both Northern and Southern CA which is not the same as BB. http://thetickthatbitme.com/infection-fact-sheets/borrelia-hermsii-tbrf-fact-sheet/ Our LLMD would treat a recent tick bite with Doxycyline. However that does not cover for Babesia if the tick carries the infection. It is always best to collect tick and have it tested for Lyme and co-infections. REI also carries protective clothing that you might also consider. Staying out of grassy area's is best. They love the shade, trees and moist areas rather than direct sun light. Here is what REI recommends. http://www.rei.com/expertadvice/articles/insect+repellent.html Lets just say... I understand your worry!!!

Nancy, I do remember the rash being similar. AND, I did find something that helps but its currently out of stock... Ozonated Olive Oil Paste. O2-Zap. I used it on Coxsackies outbreak and worked fantastic. Then tried the paste on Eczema patched and it also worked fantastic. I then tried it on some bruises and its even helped to speed up healing with overnight improvement (we have slow healers in our house). Son got a cold and I used some in his nose to clear congestion and it worked. So..... I tried it on their cheeks and it is also working. To be dealing with the rash for almost two years with very slow improvement it is nothing short of a amazing to see the recent improvement. Again, it got me wondering as to the cause.... our LLMD did have me do some topical treatments for Bartonella initially and it didn't seem to help. This is helping... I am hoping it clears their cheeks fully and then I'll move on to chest??? Ozone treatments are interesting to me as a results. I think Michael Tampa mentions Ozonated Blood treatments and now curious to its success. I have also heard of them helping tremendously on intestinal issues.

Dedee What you describe is called 'Livedo Reticularis' it is swelling of the medium blood vessel. Two of my children suffer from it severely... its over their entire bodies all the way up to their cheeks even when warm. They have gestational/congenital Lyme Disease along with other TBIs and chronic infections. One thing I noticed from old photos is the rash was present days after their birth. Unfortunately, I had no idea what it was at the time. Individuals with Lyme often have thick or hypercoagulated blood and I envision the Livedo Reticularis to be a by product of thick blood or possibly biofilms. I have no idea if my perspective is correct but here is an interesting blurb on thick blood: http://www.jigsawhealth.com/resources/thick-blood-symptoms

Our older DS also had a flaky scalp... similar to 'craddle cap'. He had this symptom for almost a year prior to sudden on-set and our pediatrician said not to worry about it. It resolved completely with first hdIVIG. Eczema didn't appear until much further into Lyme treatment.

We have had eczema flairs with antibiotic rotations. I asked our LLMD about it.... the response was 'when we see eczema we think viruses and when we see acne we think detox'. You might run a viral panel to see if its an issue. We have/had positive results for HHV6, Coxsackies and XMRV for the kids. You can run a basic viral panel and Coxsackies titers via Lab corp. We have always known younger DD had high Coxsackies 'foot and mouth' titers but never express any physical symptoms. Recently we switched her to tindamax in combination with other antibiotics and she had a huge Coxsackies outbreak. She is also on two different antivirals. Tindamax will treat cyst form of Lyme and also get at biofilms. I am assuming the Coxsackies was bound up in the biofilms and why we had the huge response finally. Per our Dr., viruses are often smaller than antibodies so its possible to pick up a virus via the IVIG as the screens are not small enough to filter. Hope that helps.

Dr. LLoyd is our pediatrician and I posted his information to the forum. I just sent you a private message on what to expect. Please check the upper right hand corner for your message box.

Has anyone mentioned the possibility of Kawasaki's Disease diagnoses. When you mentioned the double conjunctivits and chapped lips.... followed by body rash I immediately thought you should investigate with your Dr. His fingers, palms and feet might be peeling not just red. The irritability is extreme and they are typically very restless especially at night. My son's fever would remit with advil but rise again when stopped. The treatment for Kawasaki's is hdIVIG. It will be covered by insurance. What we found post Kawasaki's is that my son was suffer from multiple chronic infections and why he may have had such an extremely immune response at the time. First phase: - Fever, which often is higher than 101.3 F (38.5 C) and lasts one to two weeks -Extremely red eyes (conjunctivitis) without a thick discharge -A rash on the main part of the body (trunk) and in the genital area -Red, dry, cracked lips and an extremely red, swollen tongue ("strawberry" tongue) -Swollen, red skin on the palms of the hands and the soles of the feet -Swollen lymph nodes in the neck and perhaps elsewhere -Irritability http://www.mayoclinic.com/health/kawasaki-disease/DS00576/DSECTION=symptoms

The response post hdIVIG was similar to an extended herxheimer response for us. Six months after 3 hdIVIG treatments for our older son we found out we were dealing with multiple chronic infections. Had I known what I know now its very possible I might have even picked up on a cycle of increased symptoms post treatment potentially indicating how he was infected. We did see gains from hdIVIG but it was also not the answer to full remission of symptoms. Out here on the West Coast/Northern CA we do not have access to regular hdIVIG and would need to travel to Dr. B or Dr. K. For many, that is just not possible. As a result, those of us dealing with chronic infections are seeing the same small group of treating Dr.'s. What we are finding is its the right "combo" of antibiotics that cross the BBB that melt the OCD away. Granted, most of us are with an integrative Dr. and we are utilizing detox methods and looking at other things that might be creating a hyper immune response inclusive of allergies, gut issues, heavy metals, viruses, methylation, KPU, biofilms, etc. Addressing all of these additional issues has been beneficial but not the complete answer either. Unfortunately sometimes it is trail and error with the right combo of antibiotics, the herxheimer response is also counter intuitive making it extremely difficult for some parents to tell when treatment is working and even finding the combination antibiotics can be difficult. For some dealing with chronic infections it has taken a combination of four antibiotics to have success and often these children have many, many infections. Anyway, If the hdIVIGs do not work just know there are other things to investigate at that might bring remission of symptoms. Wishing you all the best on your journey to recovery.

We had two of three children negative for co-infections via Igenex. One child however was positive via blood work for both Bartonella/Babesia. Our LLMD felt its was an 'indication' that the other two were infected similarly because we were dealing with congenital Lyme. We ended up doing several different types of tests to determine if Babesia was an issue for the other two: blood smears, stools analysis, CBC panel, clinical symptoms, treatment responsiveness, ART muscle testing, etc. It is now very clear all three children had/have Babesia even in absence of positive blood work. We also did ART muscle testing for Ehrlichiosis and my older son and myself are positive. Thankfully Ehrlichiosis gets treated along with Lyme. Babesia requires an anti-parasitic... typically Mepron. Our WBC in one child is still 4.6 at last check but we just started treating Babesia after treating Bartonella/Lyme for a very long time. I suspect neither infection is fully dealt with but this particular child is doing much, much better.

C4a is an inflammation marker. It generally correlates with symptom presentation C3a is an autoimmune marker C4a can be due to infection http://betterhealthguy.com/joomla/blog/216-ilads-2010-conference-takeaways

I can't remember if you have run co-infection panel for Lyme yet? We had similar results and low WBC. When you are dealing with Tick Borne Infections the low WBC can indicate Ehrlichiosis or Babesia. "The healthcare provider should also look at routine blood tests, such as a complete blood cell count or a chemistry panel. Clues such as a low platelet count (thrombocytopenia), low white blood cell count (leukopenia), or elevated liver enzyme levels are helpful predictors of ehrlichiosis" http://www.cdc.gov/ehrlichiosis/symptoms/ "Thrombocytopenia and a normal or low white blood cell count are common" http://aapredbook.aappublications.org/cgi/content/extract/2009/1/3.11

Neither PANDAS or Lyme are an easy fix. However, when you understand 'all' the infections/issues causing the immune system to topple the odds of success are to your advantage. I think your positive Lyme results will sink in and you'll soon motivate in your understanding (even though you have a fairly good understanding already) to get your family well. I would document your son's bad days to see if you can't pick up on a cycle. Wishing you all the best on your journey to wellness. I can not express enough how important it is to have a regular detox program in place. Something you might try immediately to help yourself with fatigue is the following detox drink. 1. 1 oz. Aleo Vera (a lot of Bs, Zinc, E, Folic Acid, etc) 2. Juice of one lemon (detoxing/alkalizing) 3. Chorophyll Drops as directed on bottle (helps regenerate/oxygenate red blood cells) 4. Vitamineral Green by Health Force as tolerated (many anti-inflammatory green foods) 5. Enough water to fill glass and tolerate taste. Although I crave the drink and think it tastes great This particular drink is very alkalizing and will immediately help combat any bacteria's in the gut. I'd also add 1/4 cup bentonite liquid (increase amount when you can tolerate) at bedtime 2 hours away from any supplements and antibiotics if possible.