KeithandElizabeth

Yes, we did 1 HD IVIG followed by 5 small dose IVIG's and then by one more HD IVIG. Our last IVIG was in February of 2010. Elizabeth

I just wanted to let you know that I hope your son (and whole family) continues to see an upward trend now. The weeks post IVIG for some families can be really rough. Have you tried any of the detox remedies? During one particularly bad post IVIG moment, we gave our son both high quantities of charcoal pills and bentonite clay at the same time and we definitely saw some relief! Elizabeth

ShaesMom I think it is such a great idea to check yourself for lyme as well. Lyme loves to hang out in the organs and some LLMD's will put a patient on antibiotics or use an herb called Samento to bring the lyme out of the organs and into the blood prior to doing the IGENEX and/or Neuroscience testing. I know this whole new area of research into lyme disease is so overwhelming! Now that I have read so much on the different microbes and the havoc that they can create on one's immune system, I actually feel less scared about my children's "PANDAS" symptoms and I have so much more hope for their future! We are here for you! Elizabeth

EAMom: This topic has been on my mind lately because I recently listened to an audio conference by Klinghardt discussing his thoughts about not supplementing different deficiencies because the bacterias feed off of these amino acids. Our son did have low ferritin and magnesium levels and during our initial phase of treatment with a DAN pediatrician, we supplemented our son with heavy doses of iron and magnesium. Our son also had borrelia and babesia, which we did not know at the time and Klinghardt says that borrelia feeds off of magnesium and babesia feeds off of iron and to not supplement during lyme treatment. This makes sense to me now. I think that the doctors should be wondering what is causing the deficiencies before simply treating them. So, your quote about reducing bacterial growth is very interesting! Food for thought! Elizabeth

I will PM you! Elizabeth

Our LLMD uses ART in order to diagnose and treat all microbes. We had positive ART tests on certain microbes when the blood tests were negative. Both of my children had babesia, which is often hard to pick up via bloodwork. We have found ART to be especially beneficial in determining the most effective antibiotics/herbs/homeopathy remedies for each child. Our daughter was able to complete lyme treatment in 8 months with ART and our son, who was extremely sick, was able to complete treatment in one year. Falling Apart - great news that the ART has been so beneficial to your family as well. I have always followed your story so closely and I am so happy that you are finding answers and solutions regarding the health of your family! Elizabeth

Great news!!!!! Thank you for sharing!!! Elizabeth

Hi Jennifer: Our oldest daughter finished treatment for strep, lyme, babesia, mycoplasma and one parasite in October of 2010. She has been off antibiotics since November (5 months). She has had 98% days, but we have had to put her back on antibiotics for 3 ten day periods when we did see "PANDAS" (OCD/TICS) symptoms come back. As time goes on, it seems as though her regressions with illness have a shorter duration (a couple of days) and her downfall is not as low. For instance, her bad day with a regression is still 85% better than the worst of the worst. Our LLMD feels that it takes months to heal the damage from all of the microbes and that the immune system has a short term memory and when reinfected with an infection within the first 6 or so months of treating lyme, you may see the same symptoms that you had with lyme disease. So, I think that once done with lyme or any other microbe treatment, you may still have some lingering symptoms until the body has had a chance to fully heal. Elizabeth

My son had 4 to 5 small dose IVIG's and 2 high dose IVIG's and we never did the steroids with the IVIG's. Steroids suppress lyme and are therefore usually avoided in lyme treatment. The IVIG's went fine without the steroids, but I do not know if they really helped us in the long run. We did see a reprieve with the two high dose IVIG's, but they were not sustained and we then decided to let our son try to fight the lyme on his own. Elizabeth

Michael: Let us know what you end up doing for a bed. We need to find a bed for our daughter and we have been looking at chemical free beds, but they are so expensive! Elizabeth

Whoa! Sounds like a great treatment plan. So, just to forewarn you in that the Samento created the biggest herx for our son, although, our daughter was fine with it so everyone is just different. The herbs sound like they can be more benign, but they are pretty powerful! We definitely followed his instructions in terms of only adding only one drop a day because the herxing was rough. The Mundipur and Renelix should really help with detox! So, did he start you on Mepron as well for the babesia? Yeah, I am so glad that you have a treatment plan!!!!!! After watching your journey on the PANDAS forum, I just feel excited for you in terms of figuring out the root cause of your symptoms and for having a plan in place!! Elizabeth

YES!! We have had regressions all along. At one point in time my son was 96% better and then he got a mycoplasma infection which set him way back!!! This was followed by a couple of viruses which set him slightly back and then WHAM, another huge setback with a staph infection! So, I do think that staph, strep and mycoplasma can create big setbacks and for some children, viruses, stress, etc.... can create little setbacks. I think that these children need to get rid of the big infections and then spend some real time healing before they no longer respond to other illnesses. Our LLMD said that we should not expect our children, or adults for that matter, to be at 100% when done with treatment because there is nerve damage healing involved once all infections are gone. It is so painful for the whole family when we experience these setbacks and my heart goes out to you!

Wow Emerson! Well, now you know what you are fighting and I think that you will be so surprised at how much better you will feel once you rid your body of all of these infections! I look forward to your update tomorrow! Elizabeth

Melinda: I am just thinking aloud right now.... So, I guess I am perplexed about the positive streptozyme levels when your daughter is on so many antibiotics. I am wondering what Dr. Jones says about this? My son was backsliding last winter amidst monthly IVIG's and Augmentin and this is when I knew something was amiss. At this time, his streptozyme level was also positive and this is when I realized that there were more infections at play to allow strep to invade while on antibiotics and IVIG. So, I am wondering if the current antibiotics she is on are not as effective anymore? Have you looked into viruses yet? Viruses set us back many times and we now using an over the counter anti-viral as a preventative measure. We have had regressions with new mycoplasma infections, staph infections and viruses. I cannot remember what antibiotics your daughter is on right now, but do they cover staph? I know these regressions are so hard and trying to figure out if there is a new infection at play versus a herx is so mind boggling. Elizabeth

Emerson: Herxing can be really rough for some people. One idea I was thinking about while reading your post is for you to do a big detox this week in preparation for starting lyme treatment. You could do a cup of bentonite clay in the morning and then again at night everyday this week. Your LLMD will probably also incorporate detox formulas into your treatment plan. You may want to read through the blog lymebytes by the author of Insights into Lyme Disease. She has battled lyme disease for years and gives many helpful detox hints as well as vital information about lyme and its coinfections. You may notice a great improvement followed by very bad days. This will be a bumpy road, but keep envisioning the light at the end of the tunnel! Post when you need support! We are here for you! Elizabeth

Oh my gosh, I cannot stop laughing. This could be my exact note! To add to your post, I had 4 grandparents and my brother all go to their separate doctors and get the Anti-Dnase B test along with the ASO and Streptozyme tests! Then several different doctors became confused when a few of the family members (mind you these are not my children, but their extended family members) had elevated Anti-Dnase B. Then two people were referred out to Infectious Disease Specialists who just scratched their heads. So, after a year of frightening our whole extended family and friends about strep, we now are trying to teach everyone about lyme disease, but we get quite a bit of eye rolling! eli

Hello: Both of my children have been on Artemisinin for Babesia. My son is still on Artemisinin (and has been for the last 8 months) and I believe this is the one supplement that most LLMD's pulse. Our LLMD does 4 days on and then 3 days off, but each LLMD may pulse differently. We have also used Grapefruit Seed Extract and I have read that many LLMD's are beginning to use this to aid in cyst bursting. It has many other anti-bacterial and immune enhancing properties as well. I know that Dr. Klinghardt is a big advocate of tonsil removal, but we chose to wait on this decision because our LLMD did not think it was necessary. This is a hard decision because every doctor seems to have a such a strong opinion about the tonsils. Our nutritionist feels that the tonsils are an important part of the immune system and removing them does not prevent the bacteria from entering the body. We have friends in our town who also have a child with "PITANDS" and they removed their son's tonsils and then their son ended up in the ER several times with strep in his gut. One idea would be to see how your son does with the addition of antibiotics. But, I think highly of and respect Dr. Klinghardt's philosophies so please let me know what else you learn about the necessity of removing the tonsils. Please keep us updated. Elizabeth

I have analyzed this topic endlessly when I decided to stop IVIG's on our son and to not do one at all on our 12 year old daughter. After speaking with many doctors and reading through many blogs of parents with children with lyme and of adults with lyme, my current thoughts are that only small dose IVIG is warranted ONLY if there is true neuropathy issues. After doing 6 IVIG's on our son and watching how long it is taking him to completely rid his body of the coinfections, I wonder if the high dose IVIG's did not suppress his immune system. Our daughter, who never had an IVIG, responded much quicker to lyme treatment than our son. High Dose IVIG is for autoimmune issues, hence it is immune suppressing. So, you may see a short term gain, but I think that in the long term, the body may have a more difficult time in fighting the infections. In terms of doing the low dose IVIG's continually, I have had one doctor (who has 5 IVIG rooms in his office) say that he feels the body can become too dependent on the IVIG's and not fight on its own as much. So, my thoughts were to have my children try to fight the lyme and coinfections on their own and not taint the situation with the IVIG's. Granted, this was after doing many IVIG's. LOL Anyway, this is a topic that I think of often! Elizabeth

I am so sorry Michael. Have you ruled out other possible infections? Steroids can sometimes have an adverse effect if there is an underlying chronic infection because suppresses the immune system. Elizabeth

Well, we began by treating our son with a High Dose IVIG. This gave him a great amount of initial relief. We then began doing monthly small dose IVIG's and he did start to backslide. We ended the IVIG's with another large dose a year ago. In March of last year, we discovered that our son had strep, mycoplasma, lyme, bartonella and babesia. I was very surprised that he had so many infections after being on prophylactic Augmentin for a period followed by high dose Azithromycin and after doing so many IVIG's. We quit the IVIG's and focused on treating all of the infections with a lyme doctor (via ILADS). He is doing so much better, but it has been a very bumpy journey. The combination of multiple antibiotics has been more helpful than the IVIG's. I hope this helps! Elizabeth

Yes, my son had horrible hallucinations. He had them during the day and he would wake up seeing things in his room every night. He was constantly paralyzed with fear. He always mentioned that he saw these nightly things in green and Dr. K did tell us that this was a common color for halllucinations. And my son also had irrational fears, such as snakes in the bathtub and toilet, etc........ To give you some hope, our son has not had hallucinations in a long time, but he does goes through stages of irrational fears when he has setbacks. Elizabeth

Hi Dedee: I personally think that it is critical for you to rule out an infectious disease before using steroids as a treatment. I do think that steroids can give a short term reprieve, but can suppress the immune system thereby creating a more difficult time in the long term when your child's body needs to fight the infection. Have you ruled out all chronic infections? I think that it is possible that if your child is still symptomatic, there might still be an underlying infection. Elizabeth

I definitely think that it would be a good idea to check the whole family for lyme disease. I would even add the herb Samento prior to testing in order to bring out any spirochetes (lyme) that could possibly be hiding in the organs. Our LLMD usually prescribes 6 weeks of antibiotics OR the herb Samento prior to lyme testing if he suspects that lyme could be involved. Elizabeth

Hello: Welcome to the forum. There are many great threads on this forum and I think that you can help your children. I would advise you to look over at the lyme forum because many families on this forum have discovered that lyme and/or mycoplasma have been an underlying infection. Some of the sickest children do not initially have positive lyme tests because lyme likes to live in the organs instead of the blood. Most good LLMD's will start a symptomatic child and specific antibiotics before doing a lyme test in order to bring the lyme out of hiding. I would especially recommend reading MichaelTampa's Klinghardt post on the lyme forum because Dr. Klinghardt discusses chronic infections and its role on development disorders, autism, and brain tumors in children. We are here for you, Elizabeth

bumping up for newcomers!