Jump to content
ACN Latitudes Forums

jjk4

Members
  • Posts

    25
  • Joined

  • Last visited

Recent Profile Visitors

1,290 profile views
  • MDL

jjk4's Achievements

  1. It sounds like you are on the right track in seeking out more information for him. You are his best advocate and should follow your gut instinct. Has he been tested for Lyme? Our daughter had many similar things going on and then was ill with "flu" in June 09...never really the same since. We have been treating her for Lyme for 4 months and her overall health is much better and she is functioning well less "sensory" stuff, less anxiety and range, and no more verbal tics. Now, when exposed to strep, her symptoms are less and shorter in duration. I believe that she was intially exposed to Lyme years ago and the illness that June was the last straw on her immune system. In our case, she had 2 negative Western Blots but positive when tested by IGenex lab. I am not sure if Sick Children's Hospital will send out the blood for you but wouldn't hurt to ask. Good luck!
  2. You could start with the IgM and IgG Western Blot (box 188 and 189 on page 2 of the form) for $200. However, if this comes back showing exposure, further testing for co infections would be indicated and interpetation from a Lyme literate doctor very important. Good luck!
  3. Recently, my husband had his blood drawn at Clinical Lab Parteners in CT and they sent it out to Igenex with a referral from his GP. He only had the Western Blot ($200) and our insurance covered 80%. When his testing came back positive for Lyme, he then consulted with a Lyme Literate MD who is further testing him for co infections. It is great that you are getting the Igenex testing! Good Luck! Joanne
  4. My daughter was not on abx for the first test; on Augmentin 2 months at the time of the second test; and on Augmentin 6 months at the time of the third test thru IGENEX. So, you can test while on abx. I think it is most important that all bands are properly evaluated and that suspected co infections are ruled in or out. If you are thinking that a tick born bacteria is at work here in addition to strep, perhaps seeing a Lyme literate doctor will help to direct how to further test and treat. Good Luck. Joanne
  5. Hi, my daughter had band 41 on standard Western Blot on 2 different tests but was considered negative for Lyme according to CDC guidelines. We were not seeing improvement in her symptoms on Augmentin so we consulted with a LLMD. My Lyme doctor felt in isolation, band 41 is not of huge concern if all other bands have been properly tested and that coinfections have been ruled out. In our case, that was not done until we saw him. He has years of pediatic lyme care experience and feels that the co infection Bartonella can be the cause of neuropsychiatric symptoms. The diagnosis of Lyme is a clinical one and treatment is chosen based on the individual need and response. So, I am not sure if there is a "best" antibiotic. We were told treatment will be for at least 4 months and should continue for 2 months beyond symptom resolution to ensure the bacteria has been treated beyond it's life cycle. Our daughter has been on zythromax, bactrim, and tindamax for 3 months with good results. I was told that her program addresses active Lyme, Bartonella, and any bacteria that has developed a biofilm or changed into a dormant cyst form. The goal is to treat long enought to get to all the bacteria and minimize the risk of relapse once treatment is completed. Hope this info helps. Joanne So are you actually going after band 41......Scott doesn't seem to think it is of concern either...but maybe it is a marker for some other bacteria,,,i guess as dr T indicated???? is the zith, bactrim and tindamax for lymes? is it just for some other infectiona that 41 might be indicating? how long before you started to see results??/ 1 month...just now??? i'm asking as my head is getting cloudy and i really cant' anything straight anymore......is it maybe just and inflammation marker... .it that what TLR5 marks or is tlr5 a marker for a food bacteria... ds also has dybosis, from what i can gather,,,all his bacteriaa, funguses and yeasts seem off??? are my questions making sense??/ or Sorry if my post was not clear. Band 41 was the only one that was present when the 10 bands were tested per the CDC Western Blot standards. When we redid the Western Blot with IGENEX per our LLMD, we found numerous other bands present which were indicative of Lyme exposure(18, 31, 34, 41, 93). The coinfection Bartonella was also found. So, the Bactrim is to treat the Bartonella and the Zythromax and Tindamax are to treat the Lyme. The first 3 weeks of treatment were challenging but then at about the 1 month mark, we started to see more improvements. She is not 100% yet but doing so much betther than before we started the program in March. Hope this helps to clarify things. Joanne
  6. Hi, my daughter had band 41 on standard Western Blot on 2 different tests but was considered negative for Lyme according to CDC guidelines. We were not seeing improvement in her symptoms on Augmentin so we consulted with a LLMD. My Lyme doctor felt in isolation, band 41 is not of huge concern if all other bands have been properly tested and that coinfections have been ruled out. In our case, that was not done until we saw him. He has years of pediatic lyme care experience and feels that the co infection Bartonella can be the cause of neuropsychiatric symptoms. The diagnosis of Lyme is a clinical one and treatment is chosen based on the individual need and response. So, I am not sure if there is a "best" antibiotic. We were told treatment will be for at least 4 months and should continue for 2 months beyond symptom resolution to ensure the bacteria has been treated beyond it's life cycle. Our daughter has been on zythromax, bactrim, and tindamax for 3 months with good results. I was told that her program addresses active Lyme, Bartonella, and any bacteria that has developed a biofilm or changed into a dormant cyst form. The goal is to treat long enought to get to all the bacteria and minimize the risk of relapse once treatment is completed. Hope this info helps. Joanne
  7. Hi. I would like to add to LLM's suggestion to make sure you have as much information about the possible bacterias that are triggering your daughter's symptoms. It is critical for her healing. My daughter (9) also had repeated illness with strep but also has food allergies. Treating these issues with diet and full dose Augmentin for 6 months helped some with her compulsions, anxiety, fatique and general behavior, but the biggest change we have seen was when we started treating her for Lyme/Bartonella 3 months ago. Addressing the combination of the above has made a big difference. According to our Lyme doctor, the co infection Bartonella can trigger neuropsychiatric symptoms and needs to be addressed (we currently are doing this with Zythromax, Bactrim and pulsed Tindamax). We have not ruled out the need for IVIG in the future but are giving this a try first...we are seeing results. This can be such a confusing process but keep digging to get the answers you need. We cycled thru seeing 8 different doctors, had an endoscopy, tonsilectomy, and numerous tests (blood...including 2 negative standard Western Bolts, CT scan, EEG, echocardiogram) before getting proper testing thru IGENEX and treatment specific for Lyme/Bartonella. Hang in there and follow your gut...you will find a way to help you daughter! Good luck. Joanne
  8. Yes, my 9 yr old daughter was dx with PANDAS in Fall 09 and dx with Lyme/Bartonella in March 2010. We are 2 months into Lyme treatment and seeing progress...but still not 100%.
  9. Hi, first let me say how sorry I am to hear about your son's backward turn in his recovery. It is so exhausting and the idea of adding Lyme treatment to his care can seem daunting. With that said, if changing his treatment plan helps his body rid itself a bacteria that is so harmful to him....it is really worth a try. I had to face the same difficult decisions 3 months ago and it is not an easy choice. The world of Lyme treatment is still new to me but I am learning quick. My dd(9) was sick June 09 and basically was not the same since. There was no tick or bite or rash... we thought it was H1N1. We were given the PANDAS diagnosis in Oct 09 and Lyme/Bartonella diagnosis in March 2010. Let me say that despite 6 months of full dose Augmentin, T&A surgery, and a gluten free diet, my daughter was ok but really only functioning at 80-90%. Now, we are 3 months into Lyme treatment and she is doing even better. Intially, she was a bit worse in mood, behavior and energy level but now she is between 90-100% on Zythromax, Bactrim (for the Bartonella), and Tindamax (weekends only). We were told that the coinfection, Bartonella, can mimic PANDAS. Also, we were told that we will need to treat for at least 2 months beyond symptom resolution. But, it is unknown long it would take for her symptoms to resolve completely. So, in response to your questions: 1) Yes, this could be Lyme/Bartonella at work on his system and therefore I would try treatment. Lyme is mostly a clinical diagnosis and the blood tests are a snap shot in time showing his immune response in that moment. His IgG shows Lyme exposure at some point and should be addressed. Perhaps by doing this, future IVIG would be more beneficial as his system won't be attacked by the Lyme/Bartonella. But, I would suggest treating with an ILADS doctor who is current on the best combinations of antibiotics and can help clinically monitor response to treatment. The tracking of symptoms is really important as it helps direct clinical decision making and you want to be sure you are working with a knowledgable Lyme doctor. 2) How to survive??? I have found communicating with other parents treating for Lyme a huge help! Some of the people I have been in contact with here on this board and in the local Lyme support group in my town have provided a wealth of information and encouragement. I am cautiously optomistic about my daughter's treatment but fearful about when we start to wean her off the abx. I try to take things one day at a time and try to appreciate even the smallest of steps in the right direction. For me the pay off happened recently when my daughter was getting ready to leave for school (riding by bike with her friends....WOW!) and she said "remember when I could barely get to school....glad I don't feel that way now". She left and I had tears in my eyes. So, hang in there and follow your gut instincts about what you think may help. If you have more specific questions, please PM me. Good luck. Joanne
  10. You might want to read this - http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077 "The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93." Hi, It is great that you found an ILADS doctor in your state! The symptoms you are describing in your son are so similar to what we saw in our daughter (9) who had 2 "negaitve" Western Blots (both with band 41 only) before we had her retested for all bands of Lyme and co-infections with a Lyme literate doctor. She did have many other bands present along with a co-infection Bartonella. We were told the Bartonella can cause many neuropsyche symptoms. We are almost 2 months into treatment on Zythromax, Bactrim, and Tindamax and seeing great improvements. She is not symptom free but has some great days....we live one day at a time around here. I would follow up with the Lyme doctor for both kids just to be sure. Good luck!!!! Joanne
  11. Hi I would encourage you to follow up on anything that is not sitting right with you....ruling out all tick born bacterias is so critical to getting our kids healthy. Thanks to LymeMom there is good information in previous threads on this post. Perhaps you can start by asking to have the IGENEX IgM and IgG Western Blot test done(188 and 189 for about $200). This will test for the Lyme bands left out of the CDC standard Western Blot testing. You can download the test script off the IGENEX web site. However, follow up with a Lyme literate doctor is really important to make sure all coinfections are addressed and that the proper meds are used for the proper duration. For us, this has made a big difference thus far. Good luck. Joanne
  12. Hi Madhu, Please note I am not a doctor and I am very new at looking at the Lyme literature but from what I have learned, Lyme is a clinical diagnosis and blood work can be very confusing. With that said, an "indeterminate" result means something is there but the immune response was not significant enough to move it to a stronger positive result category....plus I believe the positive IFA is indicative of Borrelia. The co-infections are an important part of the overall treatment for Lyme so I would encourage you to DEFINITLY further investigate it. I am sure a Lyme Literate doctor could help you better determine the best way to proceed. Keep up your hard work...you will get the answers you need! Best, Joanne
  13. I do not post often but I want to share our 9 year old daughter's story and our new information. She was dx with PANDAS in Sept 09 and has been on full dose Augmentin ever since. In Jan 10 she had T&A surgery and has been functioning at about 90% with abx. However, anytime we lower the abx dosing or try to stop, symptoms return within days. Her abx dependence has baffeled us until now.... First, I am forever grateful for the information I obtain from this forum because the more I read about Lyme and co infections here, I began to wonder what else might be going on in my child's system. Despite the 2 "negative" Western Blots (only band 41 present) from our local lab, we decided to consult with a lyme literate doctor and retest. We now know she has numerous positive bands for Lyme from IGENX and the co infection Bartonella. Our Lyme doctor has informed us that this particular co-infection, Bartonella, can mimic the PANDAS symptoms she has been experiencing. So, she is now on daily zythromax, bactrim, and once a week Tindamax. We have stopped the Augmentin. The above treatment is to get to the co-infection, the possible cyst and intracellular bacteria. Right now, we plan to do this for at least 4 months to make sure she is treated throughout the various life cycles of the bacteria...we will reassess and decide what is next at that time. It has been 3 weeks and she has had some good and bad days but nothing terrible...thankfully. She seems to be tolerating this program pretty well. I am hopeful that if we rid her system of Lyme/Bartonella, she can really heal. So, here I sit with such mixed emotions...thankful my daughter is doing ok today, hopeful she will heal, and angry that the guidelines for testing and treating Lyme are not clear enough to help all those that need it. Her positive band 41 on standard Western Blot bothered me from the start. And while this band alone is not significant, the ones that remained untested are. But, when the CDC has chosen only a few bands to test and these guidelines tell us it is a "negative" test for Lyme, what else were we to think? It deeply concerns me to think of how many people, like us, are suffering and don't realize that they don't have all the information because the standard testing doesn't assess it properly. I know that every parent with a child suffering from PANDAS is burdened mentally, emotionally and financially. The medical costs between all the doctors, medicines and tests can be overwhelming. But, based on our experience, I would encouarge a full Lyme and co infection workup that goes beyond the CDC's current, inadequate standard testing...if possible with a doctor who is Lyme literate. Thanks for letting me share and I hope we all can find the right path to have every one of our kids healed. My best to all... Joanne
  14. Hi Kari, I am just wondering how long this has been going on and if it relates to a new exaccerbation. My daughter started biting nails/fingers at age 7 (2 years prior to dx of PANDAS). We tried everything with no result. It was so bad that I was concerned she would permenantly damage the nail beds. However, she has recently stopped since T&A surgery and high dose Augmentin early January. We now make sure nails are kept neat so nothing irritates her enough to start again. Is your son still on full dose abx or prophalxis? Perhaps upping the dose or changing abx may bring some relief. Good luck. Joanne
  15. FYI....I am currently reading Dr. Amen's book "Magnificent Mind At Any Age" and it does have some interesting info about the brain and behavior with suggestions about ways to help improve brain function. The web site also has some good "brain healthy" food and supplement suggestions. However, I did call the east coast office and they told me that they do not scan/treat PANDAS as they see it as a physical issue not a psychological one???(In my mind...it is hard to seperate out the two) They did say they could help with coping strategies for the OCD if needed. Anyway, thanks for sharing the link.
×
×
  • Create New...