sf_mom

Sorry I could not remember the details of your history. Your challenges with treatment are now making a ton of sense to me. As for IV Chelation the end result could be similar.... very little dumping of metals if there are untreated biofilms hanging onto them. Have you looked extensively at methylation/detox, vitamin/mineral deficiencies, KPU? The reason I ask is I could provide you with several different protocols for biofilm treatments (much more aggressive than what is mentioned in your post) but if he is not detoxing properly and pathways are not supported all 'H*** could break loose causing him to worsen and deplete him further. As you may know heavy metals will kick up yeast/fungus and cause an inflammatory response. I am wondering if your prior attempts at chelation caused a yeast issue? Have you run a comprehensive stool analysis recently? Can your LLMD provide glutatione, HD Vitamin C, Amino Acids or Vitamin IVs? I think providing him with that type of support in advance would give him some relief and prepare him for the BIG BATTLE... heavy metals/biofilms. We have also found Babesia to be one of the most resilient infections and it has to be hit very hard with both herbals and very strong anti-malarials. At a minimum, it can take two years to treat. Edit: Ammonia Levels can be tied to high levels of Candida "One of Candida’s by products is ammonia, an alkaline gas that forms when the Candida Albicans yeast ferments sugar in your intestine. Ammonia increases the alkalinity of your digestive tract, and has even been found to promote the growth of other yeasts" http://www.thecandidadiet.com/ph-levels-candida.htm

It is very common for those that are unable to chelate heavy metals to also have Lyme. Has he been checked for chronic TBI infection et al? If chelation is not working for those with Lyme, LLMDs will typically add biofilm protocols to help break them up. Metals are often wrapped up in Biofilms. You can check/test for Biofilms via Fry Labs. I would not recommend treating for biofilms unless he was on combo'd antibiotics as you are drawing out infection. http://www.frylabs.com/biofilm.php

I would treat immediately if the slightest symptoms resurface and treat every illness entering the household like its bacterial. As you know, any new infection can really bring out the Lyme and start the downward cascade. Ultimately, you want her body to be able to handle the Lyme and so far it seems like she is doing a fairly good job. You might be pleasantly surprised at how well she does long term. I envy your position 'off antibiotics' but I know I'll worry like crazy once we are finally there as well.

Test for biofilms: http://www.frylabs.com/biofilm.php

There are others who have experienced similar. Tindamax will also treat biofilms as well as cyst form of Lyme and perhaps why you are seeing such an intense herx response. When treating biofilm's you are drawing out and re-exposing the body to viruses, bacterial infections and heavy metals that are wrapped up in them. If you would like to confirm if there is a biofilm issue, Fry Labs runs a test and will provide the level of impact. However, his intense response also suggests continued issues with methylation/detox as well as one of many other potential issues.

Honestly we didn't "jump" to chronic infection after PANDAS treatments..... We took a very long time to head down that path because our older son was serologically negative for Lyme via Igenex and he had fairly good success with PANDAS treatments of hdIVIG. We eventually had to checked intensely for other things that were not checked in advanced of PANDAS diagnoses/treatments because he was beginning to regress 6 months post his last hdIVIG. He had blood in his stool for 8 weeks by the time we finely saw an LLMD. Rather than look for antibodies we ran the Dot Blot Test via Igenex for Lyme which looks for antigens of the Borrelia in the urine. It is a test that is 98% accurate when positive 'like finding DNA match to Borrelia'. He was positive. Our LLMD also found parasites in stool, yeast, EBV, HHV6, Coxsackies 'all strains', KPU, Vitamin and Mineral deficiencies, biofilms, methylation/detox issues, environmental toxins of lead and mercury and we currently suspect bromine, florides, chlorine derivatives. We did not find positive results for bartonella or babesia but he had many of the clinical symptoms inclusive of periodic rashes associated with bartonella and babesia. He has also clinically improved with treatments and will be entering his 4th year of treatment in the fall. Our two younger children who were 2 1/2 years old when we realized there was something wrong but they did not have classic PANDAS onset. One twin was slowly losing her language ability after MMR with many odd rashes but had no OCD just high anxiety if anything. The other twin had obvious OCD, rage behavior, sensory issues, heart issues. One twin thankfully does make antibodies and came up positive Babesia and Bartonella and IND for Lyme plus many other things. They have never had steroids, they are immune deficient and we have not treated them with IVIG. I am PCR positive for Lyme but we ran more than one type of test for Lyme to confirm diagnoses. We did want to be sure it was the right diagnosis. I do not wish anyone to have to go down the Lyme - chronic infection route. It too is a tough haul. It is expensive and not easy to fix. BUT for our family it was absolutely necessary to all our children's well being. They each have a medical file that is 3 1/2 inches thick. We have ran numerous test over the last 3 years. We have two LLMDs and a Dr. who specializes in treating ASD biomedically. We are currently going through chelation for mercury/lead and detoxing bromides/fluorides/chlorides. Thankfully two kids look fairly close to full remission, one is still struggling because she is dealing with 4 additional metals. I have spoken with many families over the years with gestational Lyme and have met children now in their twenties living very full lives off antibiotics. Sadly it was never an easy fix for any of these families and some were on antibiotics for 6 or 7 years. We are prepared to also treat as long as we need. For our family, it was so much more, looking back it was a perfect storm when our son's immune system failed... I will be forever grateful to all those that helped our family even our PANDAS Dr. because each intervention has gotten us to this point. I wanted it to be simple, I wanted PANDAS treatments to work, we were even told our older son was a mild case of PANDAS, I wanted my kids to be fully well by now.... It just wasn't that simple. EDIT: A good book to read on chronic infection: Plague Time, The New Germ Theory Of Disease by Paul Ewald. It might help with understanding how medicine is changing, why some things have been ignored and how chronic infection et al is now being implicated in many illnesses. Published 2000 Our younger son was diagnosed with Kawasaki's at 5 1/2 months old. He was a changed child after diagnoses and until we treated for chronic infection. Kawasaki's share 91 common symptoms with RF. Those that suffer from Kawasaki's do not typically check for chronic infections and it is not considered to be an ongoing autoimmune illness either. We still have great concerns over his heart related issues due to Lyme, Bartonella and Coxsackie's infections. All of those infections can independently impact the heart.

All three of my kids showed deficient in Magnesium. We used Spectracell to determine vitamin/mineral deficiencies: Here is a link to a sample report of what and how they are testing. http://www.spectracell.com/media/uploaded/m/0e2064041_mnt-sample-test-report082312.pdf What dose? 600 m.g. or more What brand? Calm - Available at Whole Foods Any side effects/herxing I should look for? We've been using magnesium of so long I don't remember a specific herx but I can imagine one occurring. The nice thing about Calm is its a powder and you can start with a really low dose and work up to full dose.

I would definitely look into the mold issue. BUT, like mold, heavy metals can also be a real stumbling block to recovery. Have you challenged for heavy metals yet? I have always been worried about mold because we live in an older home but it was completely cleaned up 4 years ago prior to moving into the home. I would never have guessed all of us would have lead and mercury issues. Chelation along with Lyme treatment has really helped with recovery. Our DD that looked the most autistic of the three had the most amount of metals - 6 different with lead and mercury being the most predominate. She is struggling the most with treatment but making gains. Chelation has pushed the other two children into full recovery territory fairly quickly on their off cycle days.

I am wondering how long has she been on the Azitro/rifampin combo? It took about five months for things to really settle down for our younger son. I agree you should probably consider Babesia due to difficulty breathing. Is she better on the day she takes Diflucan? Diflucan is very good for treating lyme. We pulse 5 days on 9 days off. If she is better on that particular day maybe extend the number of days you are treating her with diflucan. The couple things that have helped us the most in the last year: Treating entire family for yeast/ fungus, treating iodine deficiency as it helps to keep yeast/fungus under control, chelation for heavy metals, HD enzymes for pancreatic function and phenol breakdown. If pancreatic function is low the body has very little ability to absorb any supplementation. You would test for pancreatic function via a comprehensive stool analysis. Chelation has been a miracle for our younger son. Prior to treating heavy metals he suffered from night waking, early waking, mood liability at times, chewing nails/shirt daily. On his days off from chelation those symptoms are mostly resolved. Best we've seen him since treating for Lyme et al. Hoping our experience will give you some potential things to investigate with your Dr and bring DD to the next level of recovery.

Here is another company that does genetic testing that 'might' be covered by insurance and is being used by one of our Dr.'s. LLM I am wondering how their results compare to 23andMe results? Are they easier to interpret or similar? My friend had it done by even another company but they did not provide a medication list. EDIT: I just realized YouScript is probably more narrowly focused on your genetic ability to metabolize certain drugs where 23andMe is probably broader reach of overall genetics. YouScript looks like it would be great for figuring out which SSRI and dosing levels based specific metabolism for drug. http://youscript.com/healthcare-professionals/what-is-youscript/sample-reports/ JoyBop: Here is a good Nova Episode on genetic testing specifically covering 23andMe. It highlights some of your concerns while also explaining benefits. It is worth watching. I've posted this before. http://video.pbs.org/video/2215641935/

I am not familiar with Equilibrant. As for the Valtrex when I reported symptoms to my Dr. he had me stop it immediately. I feel for you as viruses can be very difficult to lower load. I also had a gagging reflex kick in with Valtrex. I could still eat but it was very tentative eating. Again, if you haven't checked for heavy metals I would definitely put it on the list. You might check also check for vitamin and mineral deficiencies if you haven't all ready. You need fuel (vitamins and minerals) to fight those viruses and what other bugs you may have. Here is a website that you can order test kits directly with Dr.'s orders. No need for Dr. appointment to request test kit. Vitamin and Minerals: http://www.integrativepsychiatry.net/vitamin_analysis.html Heavy Metals: http://www.integrativepsychiatry.net/heavy_metals_test.html

I was put on Valtrex 3 times daily and felt the same. It was intolerable for me. My EBV is still very high and I am addressing it in other ways. It is believed by some Valtrex will only suppress the virus not help to lower load. I am now addressing titers with IV Vitamin C, IV Glutatione and Ozone Therapy. I may look into Nagalase and GcMaf Shots if those titers do not come down. Fatigue is one of my few remaining symptoms. I am also going through chelation and on those days fatigue is a lot worse as well as having some insomnia. BUT when I am not on Chelation cycle those therapies are helping tremendously. Have you checked for heavy metals yet? Here is a little blurb. "Heavy metals in the body, particularly mercury, causes the body to excrete magnesium. The body in its wisdom, will bind a magnesium molecule to a heavy metal particle. This negates the positive charge of the heavy metal and it is then excreted safely from the body. This is a subject described in greater detail in this helpful article about Magnesium and Toxins. For now, understanding that most every one has heavy metal body burden, and the degree it affects individuals , often correlates to the available magnesium . The body will excrete magnesium at rates faster than we can replenish through normal diet if there is a high heavy metal load. Remove the Heavy Metal load and increase Magnesium.I have experienced first hand, and seen in a clinical situation huge benefits using this protocol. So, if poor sleep or insomnia is a problem, and interferes with the quality of your life, you need help. Try the simple self help steps above. We may find you have a magnesium deficiency as a result of a toxic body burden. Detoxification + Magnesium = Sleep ! Do some detective work and purchase a simple Heavy Metal Test Kit and see immediately the excretion of heavy metal in a urine sample. Showing positive for heavy metals, demands asafe heavy metal detox protocol and more magnesium."

Ammonia smells or strong orders can be caused by infection. If google ammonia urinary track infections you'll see the immediate correlation. However, there are other infections that will cause the same like yeast. Heavy metals toxicity can also cause similar smell. Her body in an attempt to detox could sweat out the smell of ammonia.

Older DS is on 150 m.g. and he is 70 pounds. 5 days on, followed by 9 days HD nystatin that is compounded. Here are some additional things for yeast: Homeopathic: CANDIDATE - We used it with Nystatin. Herbals: Oil of Oregano, Olive Leaf Extract, Garlic There are other much stronger prescription forms for treatment that are typically pulsed but I don't remember any off the top of my head and have never used them. The following is something I'd like to try once done with current protocol. http://www.greenwillowtree.com/-strse-537/syclovir,-candida-overgrowth,-remove/Detail.bok A depletion in Iodine can contribute to yeast and fungus overgrowth. You can rub Lugol's iodine on under part of arm 2" x 2" patch. If it absorbs into skin in less than 24 hours there is most likely a deficiency. If it absorbs in less than 12 hours much greater deficiency.

I believe the aneurysm are related to the chronic infections since birth and new exposure to bacterial/viruses at time. The other child they did PCR testing for Lyme on heart valve. I do not know what lab though. Just one of many stories I hear about sitting in IV Lab 3 times a week.

Nice to read you are making progress!!!! I just wanted to mention that parasites can take a very long time to treat due to larva so I would keep at it and rotate remedies every 12 weeks (herbals or other) for at least a year. The pimples points to a detox issues, at least that is our LLMDs perspective. If you haven't tested her for methylation issues, vitamin deficiencies or done genetic testing you might consider it to help her body eliminate toxins. As well as, herbals or binders to also support detox. Here is a lab for vitamin deficiency that we've used. http://www.spectracell.com/patients/our-tests/patient-micronutrient-testing/ I thought this website was interesting as you are able to order many of the test kits spoken about on this forum with Dr. orders included and results are provided to you directly. It saves you the Dr. visit but they are charging you for kit, testing and Dr. order. I think this is a good avenue for those that need specific testing and can not find Dr. to write script or carry specific test kits in their offices.........like comprehensive stool analysis, vitamin deficiencies, yeast testing both blood and stool, parasite testing, etc. http://www.integrativepsychiatry.net

I am so very, very sorry to see your post. I would definitely follow your intuition and insist that they collect tissue for testing. If they won't, I'd get a second opinion and find someone who will. I think it could be invaluable information and especially if he has complication with the valve in the future. I share your worry as our five year old has heart related issues (aneurysm, etc.) along with Bartonella/Lyme. I know they've also found Lyme in the heart valve and might also consider PCR testing for Lyme. Lots of prayers.

I couldn't agree more and our experience has been similar to Rowingmom. Sometimes even followed by a much longer Herx. When we treated our younger son for Bartonella he raged fairly intensely on and off for first two weeks. Then we got more and more days in between rages. Eventually he would rage every seven days 'Wednesdays'. Those weekly rages began to resolve around the five month mark. Thankfully there were other indications of improvement that gave us confidence to keep treating. Our Herxs included an increase in OCD, tics and rages.

I've known several children with chronic infections (specifically Lyme et al) that this has happened. Oftentimes antibiotics are suspended until things normalize.

Not to beat yeast topic to death but it can be REALLY difficult to treat. We essentially had a 12 week period (herx/toxin) with increase of symptoms described in earlier post. We are pulsing diflucan currently and DD is complaining of stomach issues today. When I hear constipation as symptom I think yeast/parasites. Anyway, we were treating yeast at least a year and started treating with a more aggressive protocol in Jan. and are still dealing with it. Diflucan will also treat Lyme and cyst form of Lyme. How long has he been on diflucan? Sometimes you need to go above and beyond diflucan for yeast. A comprehensive stool would provide level of yeast issue or if he has parasites.

Sounds like yeast/fungus to me. Hyperness, silliness, inability to sleep, moody, stimming are all signs of systemic yeast/fungus. Have you done a comprehensive stool yet or tested him for yeast? Here is an over view on yeast. Spit test, etc. Syclovir sounds like a good product. We have not tried it because we are pulsing Diflucan and Nystatin.

Numerous combination of antibiotics have been helpful to our kids and many of the ones mentioned. However, your son's dose of Azithro seems low for his age and probable weight. You might suggest to your Dr. to double dose to see if you gain improvement prior to adding an additional antibiotic. 500 m.g would probably be correct dosage.

DH was bitten two weeks ago. We saved the TIC and are having it tested. We think the TIC was embedded less than 12 hours. No rash and not itchy. He is on three weeks of Doxy as preventative. We will treat for co-infections if the TIC comes back positive. I would try to get 3 weeks of Doxy if you can. ANY HINT OF SYMPTOMS YOU SHOULD TREAT IMMEDIATELY. When removing a TIC, a TIC removal tweezer should be used to ensure head dislodges properly. If you squeezed with finger tips and twisted often the head is left in place and the majority of bacteria in the TIC is squeezed back into host. Typically, it takes three weeks to mount enough antibodies for testing purposes. I would not bother testing yourself at this point but you might consider doing so in a month.

There is a Dr K in CT that regularly treats Lyme patients with IVIG. I am not sure if it is typically covered by insurance. I think it would be if there was obvious immune deficiencies. I have also heard/read about the use of plasmapheresis for those with babesia. Again, not sure about insurance coverage for specific diagnosis. I have heard mixed reviews for these types of treatments when dealing with chronic infection. It's very individual and sometimes only temporary relief. It might be worth a call to Dr. K in CT regarding IVIG effectiveness for Lyme/if its typically covered and a call to Dr. L to understand if plasmapheresis has been helpful to those with Lyme.

Just FYI: The one really healthy person in our household, DH got bit by a TIC two weeks ago taking out the garage or while BBQing in our backyard the night before. He actually got out of the shower and noticed his leg was bleeding. Then he noticed a TIC crawling around next to the blood. It was not embedded at the time but had obviously been embedded. It was crazy to think he may have never caught the bite. He is on Doxy and the TIC is being tested (do not have results yet). It can truly happen that easily.