sf_mom

Our older son was helped by hdIVIG (when we thought PANDAS only). However, like Rowingmom states I believe symptoms would have eventually resurfaced until infections were addressed properly. When we found Lyme our older son had blood in his stool and he was six months post his last hdIVIG. I feel the parasite in his gut was the potential tipping point and he would have eventually regressed because his body was unable to rid himself of bug due to chronic Lyme. Since treating Lyme he has not required additional hdIVIG treatments. We have not pursued hdIVIG for our younger twins even though they showed immune deficiencies both in IgG 1, 3s (1 and 3 is your ability to fight bacterial infection), total serum deficiencies plus 10 of 13 strep pneumo serotype deficiencies. Those deficiencies have slowly turned around last time we checked inclusive of strep pneumo's. My friends son who was also treated for PANDAS about one year but later discovered Lyme had temporary benefits with hdIVIG for about 8 weeks each treatment. He had three treatments about 12 weeks a part. He has not had a hdIVIG in over two years. Although greatly improved with Lyme treatment he still has some severe learning disabilities and is loaded with heavy metals which they still need to address. My friend is considering the possibility of another hdIVIG treatment just to give him a boost or reprieve even if it is only temporary. Our LLMD does recommend IVIG on occasion even though he does not administer treatments (I think it is typically low dose monthly infusions). I understand even those results are mixed. For some it brings tremendous temporary relief. But similarly, I am having a wonderful response to hd IV Vitamin C and IV glutatione but know it is often too inflammatory for others. They just can not tolerate these types of treatments. I am sorry but I think some of these treatments are truly trail and error as the outcome is individual when you are dealing with chronic infections.

Did you ever try the IV C with this particular child? My friend had similar stomach issues while taking Alinia and they stopped with the addition of IV C and IV glutatione and she is now able to tolerate Alinia. It took a month for things to improve. I have also noticed with Chelation 'too much dumping of heavy metals' I get a gagging reflex, lose my appetite and started vomiting. My body was dumping way too many metals, too quickly. Have you checked him for heavy metals? Or his Thyroid? Plus when did you start the enzymes, how much, what kind and did he get worse when you started. For me, the pancrease dysfunction, glucose and thyroid (mercury can disable thyroid hormone production) are all tied together. I am taking specific "protease" enzyme for pancrease but also working on Iodine deficiencies to dump mercury from thyroid. Anyway.... hoping something I've posted resonates and gives you a couple of things to explore.

Are you sure its Fifth's? Are her eyes red, are her lips chapped, skin on finger, toes, palm's peeling, has the redness on her face spread to trunk, swollen lymph nodes in neck? If high fever continues after 5 days you need to consider Kawasaki's Disease. The persistent fever 'high' fever is an indication that it not Fifth's. It can cause a child to have a red face similar to Fifth's. Have you checked titers for Fifth's to confirm? Again, I think stopping antibiotics temporarily is a good thing (consult with your PANDAS Dr.). Once fever breaks you can add them back in one at a time. I agree with RowingMom that there are better herbal antiviral's. Samamento/Banderal together or individually can really knock your socks off especially if she has biofilms or undiagnosed chronic Lyme et al.

If I remember correctly your 3 year old is on antibioticss, correct? One thing our LLMD had us do when our son had a severe case of the flu and was not easily recovering was to cut back on antibiotics. For some reason, the chronic infections along with flu made it difficult for him to fight everything at once. Once our son seemed to be on the mend we slowly added the antibiotics back in. Perhaps consider letting up on things until she is improved. Once stable you might also consider an herbal anti-viral to keep things in check.

At five months old our son was diagnosed with Kawasaki's due to aneurysm but also did not meet to full diagnostic criteria. He was treated in the hospital with hdIVIG, seemed to get better and was released from the hospital after 7 days. After 'Kawasaki's' he was also a changed baby with rage behavior, OCD, sensory issues, night terrors, night sweats, many Autistic behaviors, ETC. After many, many tests we found this particular child suffered from several chronic viruses and infections that included Coxsackies (more than one strain), HHV6, EBV, Babesia, Bartonella, Lyme Disease. He was checked for strep at the time but he did not have a positive culture or strep titers. About a week prior to Kawasaki's onset his older brother did have a strep related illness. This particular child is now almost six years old and treated for Lyme Disease et al since 3 1/2 years of age. Most of his symptoms have resolved and he is back to leading a fairly normal life although still on antibiotics. He still has some minor heart issues that we hope will resolve in time. I highly recommend that you seek out a PANS/PANDAS or LLMD to help to investigate many of the potential underlying issues for your son. If you mention where you live I am sure someone from the forum will reach out to you with some good Dr. recommendation. By the way, his Lyme is congenital and therefore the infection was past to him while in-utero.

Something to possibly think about... Sometimes constipation is brought on by Iodine deficiency. Have you had her thyroid checked and is it functioning properly? Iodine helps produce thyroid hormone. If her tongue is swollen and scalloped along side (google for pictures)... Usually means thyroid or pancrease issue. An easy way to checked for iodine deficiency is to purchase lugol's liquid iodine. Place a 2 x 2 inch square on arm and if patch disappears/absorbs into skin within 24 hours there is most likely a deficiency. Dr. Klinghardt talks about Iodine as one of the most important minerals when dealing with chronic infection.

There is definitely a balancing act between treatments!! Hopefully, your DD is trending better with upping the Augmentin XR. I was thinking it might be helpful to rerun or run some of the following tests to help you determine what is "currently" the main driver of your DD symptoms. 1. CAM Kinase II: Autoimmunity 2. C3A, C4A: Inflammation Markers - http://www.publichealthalert.org/Articles/gingersavely/C3a%20and%20C4a.htm 3. Binding Immune Complexes: Indication of infections 4. Biofilms by Fry Labs: Biofilms and Infections: http://www.frylabs.com/biofilm.php

If she is handling combo of Azith/Amoxicillan well and you have noticed improvement I would stick with it! I have found our LLMDs very receptive to what is working even if they didn't make the decision. If you feel things have settled with that particular combo and you want to push for further gains you might talk with your Dr. about adding the rifampin in 'slowly' to Azith/Amox. That specific combo (azithro, rifampin, amox) really helped our kids with bartonella. Older DS recently dropped amoxicillin for Augmentin XR. We worked up slowly and once his herx settled (4 weeks) he is trending better than ever.

I am so sorry to hear your DD response to Tindamax. It is also possible that the tindamax got at biofilms releasing additional infections that she wasn't ahead of with current antibiotic protocol. We had similar increases in symptoms with Rifampin (older DS) and with Core (younger DS)..... the protocol was 'not tolerable at the time' probably due to herx/inflammation. Once we got overall load down and addressed inflammation ongoing with herbal anti-inflammatory both were able to resume protocols (approximately a year later). There are many ways to address both biofilm's/cyst form of Lyme in the future. Eva Sapi's comments on Tindamax: When quantitative effects on biofilm-like colonies were evaluated, the five antibiotics reduced formation of these colonies by only 30%–55%. In terms of qualitative effects, only tinidazole reduced viable organisms by ~90%. Following treatment with the other antibiotics, viable organisms were detected in 70%–85% of the biofilm-like colonies. http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/2710311-eva-sapi-articlebiofilmsantbiotics-may-program

S & S: good list. I wanted to add you can get a yeast infection in your throat. Older DS had a chronic cough on and off for 3 years that cleared with yeast treatment. A friend with Lyme had a confirmed case of yeast in her esophagus. When my son improved I started to connect the dots....... yeast was probably in his esophagus causing the unproductive cough. Philamom: the following comment is for you. Common symptoms of overgrowth and dissemination of Candida in the esophagus are: painful swallowing, pain behind the breast bone, a sensation of food sticking in the chest, and nausea.

One thing you might check from comprehensive stool results is his level of pancreatic function and digestive enzymes. If those are also depleted adding enzymes will help to breakdown the proteins from food in the stomach that are potentially crossing into blood stream, help eradicate yeast and help the good bacteria to reestablish itself. We saw an increase in mood liability, AD/HD type symptoms, eczema, rashes when treating yeast. It took almost 12 weeks for those symptoms to settle. Even after the 12 weeks of treatment we feel yeast is an ongoing issue but at much lower level. We are also dealing with heavy metals and they tend kick up the yeast. Diarrhea and soft stool (like soft serve ice cream) is typical with yeast. I do believe you are probably dealing with much more than just yeast. However, if you want to stop antibiotics make sure the yeast fully addressed prior to taking him off antibiotics so you can get a clear perspective on how well his immune system is functioning and not confuse yeast with other potential issues. I would also recommend trying some enzymes specifically for yeast (Candex - Pure Essence) or homeopathy (Candidate) on top of herbals. Start one thing at a time and ramp up each supplement. Expect herx.

We had/have a similar response to digestive enzymes. DD gained 5 pounds in the first two months after taking Houston TriEnza with DPP IV Activity. Her attention, mood, skin tone improved and she is also open to eating a wider range of foods. Her twin brother had a growth spurt and dropped his baby fat.... got much taller (he was already tall). He did not have the same attention issues but he stopped chewing his shirt/sleeves (this took a couple months). He is also open to eating a wider range of food including raw vegetables like beans, peppers, lettuce which is just shocking because he wouldn't touch vegetables previously. Older DS who was always a good eater but now has a fuller face.. nice healthy glow. His dark circles under his eyes and chronic chapped lips seemed to have resolved. The dark circles/chapped lips have come and gone so the jury is still out on if these particular symptom have truly resolved or its just temporary improvement from something else. We are using TriEnza which is a focused enzyme for Gluten, Casein and Phenol breakdown. I am adding a Papaya based enzymes with larger amounts of protease to help with absorption and pancreatic function to see if we can't achieve further improvements. I am taking a protease enzyme that I feel is helping. I also have low pancreatic function like DD. If my dark circles under my eyes resolve I'll be thrilled.. not there yet. My chronically chapped lips are much better as well and I noticed that the freckles on my lips have faded. If you have not read the book 'Enzymes of Autism and Other Neurological Disorders' I highly recommend it. It helped me to understand their role in immune function.

From what you are describing it does NOT seem to be 'air hunger'. You might consider swabbing his nose for infection. It does seem there is something specific to your environment triggering TIC though. We have an LLMD in your area that we see about every six months for ART testing. My son is always more symptomatic while in CO but I do attritube that to travel, change in altitude and his known Babesia infection.

I am curious as to specific breathing tic? Is gasping for air or sighing 'air hunger' as this could indicate Babesia. Very specific symptom to infection. Babesia thrives in higher altitude lower oxygen environments hence more symptomatic. Higher altitude in CO over Mexico could be the cause. Salt water is also very detoxifying so if he was in the ocean or salt water pool a lot it could help decrease symptoms.

I found the following information on yeast helpful.... "Research finds yeast overgrowth to be related to autism, AD/HD, psychosis, skin problems, thrush, vaginitis, athlete's foot, chronic ear infections, hypoglycemia, food intolerances, and autoimmune conditions such as fibromyalgia, multiple sclerosis, and chronic fatigue syndrome. Yeast can produce an array of hard-to-pinpoint symptoms including migraines, headaches, moodiness, hyperactivity, social withdrawal, clumsiness, stomach aches, and bowel problems; as well as be the basis of sensory dysfunctions. "Yeast is a fungus that exist in two forms. The single-cell stage is considered the form that is generally not problematic. However, yeast can grow out of control and evolve into tis fungal form. The fungal form is especially hazardous to the body for several reasons. First, it grows root like structures that snake out from the core. These hyphae bore into the mucosal lining in the in the intestines. Like little extended worms, they pow through the protective layer of the gut. This allows any number of substances to seep through the intestines and into the bloodstream. Yeast overgrowth is a primary cause of leaky gut syndrome. Another problem with yeast overgrowth is that the yeast give off a fair number of toxic by-products as they grow and when they die. Many of these substances are neuro-toxins, very harmful to the nervous system as well as the brain. Among the numerous toxins identified are carbon monoxide, alcohol, and acetaldehyde. Acetaldehyde is particularly volatile and toxic, potentially causing a multitude of neurological, endocrine, metabolic and emotional problems. Alcohol is a by-product produced by yeast gives rise to the 'drunk' behavior seen in some people. Inappropriate and hysterical giggling or laughing, and night waking are common symptoms as well. These symptoms can occur either very rapidly after eating or appear later. The neuro-toxins greatly disrupt sleep, another important reason to get it under control. Dealing with all of these neuro-toxins at once would create 'unique' behavior in anyone, without the additional factor of a young child's developing brain, nerve, and immune systems. Yeast can do another little trick. Yeast converts inorganic mercury, which may enter the body by a variety of sources, into methyl mercury, a very quick-traveling toxic form that readily penetrates tissues throughout the body, including the brain. What type of damage occurs depends o the organs the mercury settles in. In addition, mercury and other metals can suppress the immune system, creating a nice smooth path for yeast or other pathogen to take off." This is taken from the book "Enzymes for Autism and Other Neurological Disorders'

I thought I'd attach a Nova Episode that I watched recently as it covers the 23andMe testing in detail. I think it was a balanced episode outlining the positives of this type of testing and some of the potential pitfalls. It ranks 23andMe results against other similar type of tests, etc. Anyway, my take away after watching is its potentially a good tool for guidance in your individual health. Its worth watching especially if you are thinking about doing the test. http://www.pbs.org/wgbh/nova/body/cracking-your-genetic-code.html LLM: On my way out the door but yes... yeast treatment will kick up viral issues. I'll attach quote for you from a specific book a little later today. Edit: Also wanted to mention my friend did this type of genetic testing for her Lyme/PANS son recently 'different company' and found her son had a double mutation that made him susceptible to colon and lung cancer. It was shocking information and they are fortunate to be with a Dr. that can make suggestion to help curb the probability of this type of cancer developing for her son. He is expected to be on supplements for life with regards to mutation, as well as the birth father and her. The birth father did report a family history of this type of cancer.

Nice to know the distinction between the two. Older DS and myself have horrible response to Sulfa Drugs but great response to higher dose MSM a natural sulphur (minus herx). We also have a great response to Enhansa. The amount of Advil used in our house has greatly decreased. Even DH is fearful when we run out of Enhansa because he thinks it is so helpful. If DH notices a specific supplement is working then ITS REALLY WORKING.

I feel your symptoms are indicative of Bartonella as well. Here is a good symptom list. I would include OCD as a symptom. http://www.wayneanderson.com/pages/diseases/bartonella However, given your C-Dif I think your focus needs to be dealing with that first and looking at repairing your gut health. There are many things you can do short of antibiotics to help with recovery potentially getting your over all 'bug' load down. Given that you are in FL perhaps reach out to individuals from the forum that might be able to guide you to Dr.'s that understands these issues well, that is covered by insurance that is a little closer and could see more regularly. You might also consider a comprehensive stool analysis if you haven't done one already. A comprehensive stool will tell you if you have parasites, other opportunistic bacteria, yeast/fungus, inflammation in addition to C-dif. Plus you would understand if you have good bacteria allowing you to focus the probiotics where they are needed. AND, if you have any digestive enzymes... If you have low pancreatic function a good protease enzyme could help lower NK Cell and binding immune complexes. Hopefully, feel better as they lower. I am not sure if Dr. T has tested your binding immune complexes so you might check your records. Again, a high complex will indicate they are binding with something and that is typically infection. We have treated for Coxsackies for 2 1/2 years now in all three kids. It can be very difficult to get those titers down but ours are finally much, much better. Your current titer results should act as baseline and the goal should be to treat until sub-negative... or symptom free. We've used a rotation of anti-viral herbal remedies. Valtrex 'by some' is thought to suppress the virus not lower load and why our LLMD prefers herbals but also uses Valtrex for extended period to make headway with overall treatment. Since you have such a high viral load you might check nagalase numbers as well. GcMAF shots can really help as well. Hope I've given you a few things to investigate.

Because I am at LLMDs Lab twice a week for my own treatment (antibiotic shots and IV Glutatione) I have talked to many that get vitamin C infusions. Just like the IV Glutatione, IV C is not the answer for everyone. For some, it helps tremendously and for some they just herx too intensely. I think it will depend on how well you detox, how high the bug load is and your antibiotic protocol at time of treatment. It seems to me the ones it has helped...... they were temporarily off antibiotics or on minimal antibiotic protocol and had been treating Lyme for a while. One of the individuals who I know that herx'd intensely from them was also on IV antibiotics so would plan to do them going into weekends so she could sleep for a couple of days if not well. Hope that helps.

Interesting. Look for to hearing update on how your DD does on supplement. S & S we had amazing results with Trienza by Houston as well but thought it more to be the gluten, casein issue.... but perhap it was the phenol. I am hoping to give some protease focused enzymes in combo with Houston (see if they can bring us further). DD has no absorption and pancreatic function. Unfortunately, we have to put the recent Flu in our household well behind us before we start something new.

Sorry, YES that is what I am referring to... it is VEGF and not VEGA (Lyme Brain). AND, I've read Schaller update many times. Per our Pediatrician who specializes in biomedical treatments for Autism and has dealt with a ton of yeast problems in kids, yeast is contagious so if one person in household has it most likely all have it, it too will form its own biofim in gut. However, that does not mean you need to have everyone on prescribed anti-yeast/fungal you just need to address together as a family. Perhaps not Garlic for DD but some other anti-yeast herbal GSE, Oil of Oregano or homeopathy of Candidate. Good luck off antibiotics. I think the timeframe of decline can be very important to determining what is left to work on. I know you'll be watching the next 2 weeks very closely.

My vote is for yeast, fungus or both. If the yeast has really set in, I think you may need bigger guns (diflucan, hd Nystatin plus Garlic pills to treat). If you find yeast is the problem, all family members should take the Garlic pills or similar while DS is being treated. It took a good 8 to 12 weeks to make headway. We saw a lot of talkativeness, silliness, attention, moodiness that started day 3 of yeast treatment as herx that completely resolved within 12 weeks. When the herx started it felt very intense for about a week and then each week got better and better. I think its possible the reprieve you saw in OCD was from stopping antibiotics and not from getting at the yeast "yet". Here is why: We had to stop 2 antibiotics with younger DS last Friday due to his inability to recover from flu. We saw him perk up within 24 hours of stopping... seemed symptomless from Lyme et al just stomach issues, tiredness, headaches from flu. He also started eating again after almost 5 days. Per our LLMD this morning, kids will typically get a bump up when stopping antibiotics. If they regress by day 10 they think its more likely due to Bartonella infection. If it takes a month or two to see regression more likely Lyme or Babesia is the issue. We will be restarting antibiotics as soon as he is able to hold food down for 3 days. We restart with diflucan for 3 days on top of HD Nystatin and then restart Azithro when done with Diflucan. I would seriously consider VEGA test again especially since it is covered by insurance. It would be interesting to see if those numbers are normal. Especially, since that last time you took him off antibiotics it took a while for things to worsen, not 10 days and perhaps the bartonella is gone???

I too would recommend holding off on Tindamax until you have better lab results and she is more stable. Tindamax can really stir things up. I wanted to mention that your DD's antibiotic dosages seems low for a 13 year old and why you might not be making any progress with current combo. Our older son who just turned 9 is on 375 m.g. Azith, 2,000 m.g. Augmentin XR and 300 m.g. of Rifampin per day. If memory serves me correctly, our son is around 70 pounds. Where is she with puberty? It is very common for Lyme to resurface at that time and wondering if that is also the potential cause for symptoms. Some believe it gets into the bone marrow and rapid growth can bring it out. I think it would be worth it to call Dr. J to ask to double current antibiotic dosage of Augmentin and Azithro to see if you can't get her trending better.

Boy, can I relate... we are having many normal days with older DS and no PANS symptoms. THE TICS TOOK FOREVER TO RESOLVE but now gone (knock on wood). He is "a typical" to all his friends (his best friend TICs horribly), he is meeting all school requirements and finally keeping pace athletically. We are just getting over a bout of the flu with all three kids over spring break and we had no increase in symptoms. Treating the yeast/fungus aggressively really got us there. If you read Dr. Wayne Anderson's statements about fungus (link above), I find it interesting how he looks at it as primary infection or secondary infection to Lyme depending genetic disposition to detoxify. I believe he is referencing more the terrain of the body and not your environmental exposures to mold. Our other LLMD who does ART says he typically finds yeast to be a problem at the tail end of Lyme treatment. Anyway, something to think about. We are continuing treatment for older DS for two reasons. Heavy metals and biofilm results. We know we have a problem with both. We have not started chelation yet and will perhaps hold off until summer. I honestly believe in our situation they go hand in hand - biofilms/metals . Our hope is to stripe out heavy metals weakening the biofilms. Once those metals dump I will feel confident we can take him down and off antibiotics. As you know, it doesn't hurt to stop antibiotics. I think you will know if there is a regression occurring over the next several months and then perhaps reconsider some of the above testing if he worsens. To some degree antibiotics are immune suppressing and if there is anything left in terms of infection would be nice to see if he could fight it on his own.

Hopeny: I am not sure what it is testing but I do know how to interpret results. If normal and there are symptoms Schaller believes Babesia is most likely in the mix of co-infections. Some friends have used the test for guidance with treatment. Dr. Schaller explains the VEGA in detail in his 2009 Update to Babesia. Honestly, had to read it several times as its a lot of information to take in. I can't remember if your child is suspected of Babesia or not? What is your LLMD saying about Babesia? The best description that fit our symptoms of Babesia is attached. Our older son lacked positive results but had one symptom and that was temp intolerance early evening. He always needed to pull his covers off before bed even in winter. Dr. Anderson also has some good information on Fungus on his website. http://www.wayneanderson.com/pages/diseases/babesia