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Everything posted by KeithandElizabeth

  1. I just want to ditto momofgirls. If IVIG and/or steroids are not bringing the desired results, I would suggest digging further into the possibility of a chronic infection. The first IVIG brought us a 95% improvement, but it did not last and we never saw such improvements again in our future IVIG's. We finally discovered multiple chronic infections, including lyme, bartonella, babesia, mycoplasma as well as parasites. High dose IVIG's are immune suppressive and many people will therefore have false negative IGG and IGM tests for mycoplasma, bartonella, lyme, etc..... after doing a
  2. I think that this is great news because our experience has been that lyme treatment has been key to our healing process when multiple IVIG's were not maintaining a sustained benefit. We even quit the IVIG's in order to give the body a chance to fight lyme on its own and to avoid suppressing the immune system. I think that Dr. K recommends getting rid of all chronic infections before doing high dose IVIG's. I highly recommend a skilled LLMD because, as you know, lyme often comes with multiple coinfections that are difficult to detect and difficult to treat. I hope that the multip
  3. We were also at a crossroads when 6 IVIGs did not bring us sustained success. Have you considered looking at other infections? LLM gives a great summary of a variety of bloodwork that you can run to see if there is a possibility that chronic infection is an issue with your son. After all of the IVIG's and a year and a half of constant antibiotics, we found that our son still had mycoplasma, bartonella, lyme disease and babesia. He is sooooo much better now that we are treating all of the infections. PM me if you have any questions. Elizabeth
  4. I am so sorry you are going through this awful painful experience right now. My immediate "brainstorm" thought for you while you are waiting on testing and the possibility of PEX/HD IVIG is to talk to your doctor about the possibility of incorporating two antibiotics into your regime at this point in time. There have been several families who have discovered long term chronic infections such as mycoplasma, bartonella and/or lyme that often require two antibiotics at once. Another thought is to consider treatment for viruses as you wait. Viruses have also been an issue for our family and
  5. We were one of the families that were not getting a sustained benefit from IVIG and steroids. All I can say is that I have know idea where we would have ended up if there were not other options to consider. I think that most of the infections, including strep and staph, can be addressed with 1 or so years of antibiotics, but the scary thing about lyme is that it is not easily treated with one antibiotic and the scarier thing is that my children both had the Lyme coinfection, Babesia, which is only really treated with an Anti Malaria drug. I am so very thankful for this forum and for
  6. You are at a difficult crossroad right now and all anyone on this forum can do is to offer you advice based on their experiences and you can take bits of this advice and apply it to your situation and throw out the rest. On that note, this is our experience: We chose to treat PANDAS aggressively with 6 IVIG's with our son and the first IVIG brought miracles and then we never saw the same gains with the rest of the IVIG's. We were at a complete loss until Lyme mom started posting and even though her posts scared me to death and I thought lyme did not apply to us since we do not live in a
  7. Netflix is now showing this as an instant play movie! We are still in the process of recuperating from watching the movie last night. It was so well done! We are feeling so sad today for all of the people with lyme disease who are not able to find treatment and for all of the people with illnesses such as PITANDS, MS, Lupus, Chronic Fatigue, etc...... who may have lyme and never find out that lyme may be at the root of their disease. Elizabeth
  8. Yes! I believe there are many infections, including Bartonella, that can lead to OCD. As many have said already, I would consult with a great ILADS trained LLMD to rule out other infections that often accompany Bartonella. Your daughter sounds like she has been very sick since birth and if she was born (perhaps congenitally) with an infection, chances are that the infection weakened her immune system substantially. Once an infection takes hold and weakens the immune system, the body is susceptible to additional infections. After one year of PANDAS treatment, we found out that o
  9. I do feel that a combo antibiotic approach which addresses the lyme and bartonella should also address the strep. I now believe that this is all PITANDS and that these are not separate illnesses (i.e. lyme and PANDAS). For us, every single infection creates a PITANDS reaction, even viruses. So, by treating every infection with which your daughter is infected, I feel that you are addressing her PANDAS or PITANDS. I hope this helps. Elizabeth
  10. Laura: I agree with Kim in terms of heavy detox! If you can, I would try to get 2 cups of bentonite in a day. Even just giving your daughter a 2 day break from antibiotics should help a little. All last winter, my son herxed so intensely from lyme treatment and we had to give him a 24 hour break once a week for about 6 months. I am so sorry you are going through this right now! It is sooooo painful! My thoughts are with you!
  11. Actually, our doctor had just run out of the urine tests when we were in his office so our son tested for KPU via ART testing. So far, our LLMD has done the urine tests on all of his positive ART KPU tests and he has been right 100% with the ART. I thought my son had KPU issues long before we discovered lyme disease because of his reaction to chlorine and his complete inability to tan a few years ago. We are done with lyme treatment now and the herxing was very very rough. I have heard that if one does the KPU treatment at the onset of lyme treatment, the whole treatment will take less tim
  12. Hi Laura: My son finished lyme treatment about 2 months ago, but he has had some lingering issues (he is around 90%) and he has had several infections post lyme (klebsiella, flu, and mycoplasma). Our doctor is now checking most of his patients for KPU and said that he feels that our son's lingering issues are toxin issues and that the KPU treatment will help him deal with toxins. I am working with a nutritionist who feels that heavy detox will also help with this without having to do the KPU treatment so we plan to try the heavy detox with bentonite clay first for a couple of month
  13. LLM: I have been researching this same topic lately because my son has been diagnosed with KPU (HPU). I suspect both of my children are positive for different variants of the HLA gene since many of my family members have been tested positive for these genes because they have serious autoimmune issues. I believe there is a correlation between KPU and the HLA gene since both are dealing with poor detox mechanisms. Following is a great article my doctor gave me about KPU: http://lymelighters.org/uploads/012610_KPU_Forsgren_explore_18-6.pdf Interestingly, roughly 1 out of 4 people h
  14. Our LLMD resolved Bartonella for both of our children with the azithromycin plus omnicef combo. He believes that you need to deal with parasites, viruses and mycoplasma before your body will attack the bartonella. The azith/omnicef combo also dealt with the mycoplasma. Elizabeth
  15. I am just so happy that you are uncovering these infections and I feel that once you get rid of ALL of the infections and give Shae a chance to heal afterwards, you will see such a remarkable difference! Elizabeth
  16. I am so very sorry that you are going through this right now! I would suggest calling ILADS immediately to find the nearest lyme doctor. Below is the ILADS website and their phone number is 301-263-1080. An LLMD (lyme literate doctor) can help your child with most chronic infections, including lyme, mycoplasma and strep. http://www.ilads.org/contact/contact_ilads.html For your short term crises, maybe charcoal or bentonite can help with detoxification and we always felt a little relief with motrin. When our son was having his worst episodes, we used 2 cups of bentonite and this
  17. Have you checked your daughter for other infections such as chlamydia, mycoplasma and lyme? These chronic infections can often cause elevated C3D levels. Elizabeth
  18. Again, I am so glad that you are treating your husband. Just curious for future reference, how did you save and send in the tick? I am curious as to what steps you took because we are heading to a lyme infested area for a week this summer. Thanks, Elizabeth
  19. Gosh, this gives me the chills! I am so glad your husband is already being treated and that you tested the tick! This also makes me sooo sad because I am becoming so afraid of nature and no longer want my kids out hiking and camping! Thanks for updating us! Elizabeth
  20. I have been thinking about you and so happy that you have an appointment!!!! YEAH! Elizabeth
  21. Yes, I believe that both of my children have chronic neurological Lyme Disease. I believe that the lyme was silent for many years, but was the root cause of their PANDAS issues and high Cunningham titers. I feel that once they got strep, their bodies just crashed because their bodies could no longer fight the multiple infections. Elizabeth
  22. My son (58 lbs) was on cipro plus azith recently for a staph infection. His prescription was 250 mg. twice a day.... so seems like a comparative prescription. Our instructions were to take the azith until our next appointment, but to take the cipro for 2 weeks with one refill for another 2 weeks if I felt like he still needed the cipro. It definitely helped with the staph infection within the two weeks so we did not go the full 4 weeks. Our LLMD went over all of the side effects that you read about and did say that it was rare, but to be aware of them. Let me know if you have any ot
  23. The ups and the downs are sooo confusing through lyme treatment. My biggest piece of advice is to up the detox and incorporate motrin when going through downturns. I did notice that when my children finished one infection and then started working on another infection (via ART), their symptoms increased. For instance, you may have finished working on the parasite and mycoplasma, but now your body may be really fighting the bartonella. Unfortunately, we even had some really rough times during the last few weeks of fighting our last infections. For us, this was babesia. I was shock
  24. I think there are so many great posts on this thread. I look at the big picture slightly differently in that I do not think that my children actually have Lyme Disease and not PANDAS, but rather that my children had a neuropsychological response to many different microbes and that perhaps this response became an autoimmune reaction. I think it is important to check for borrelia (lyme), bartonella, babesia, strep and mycoplasma to name a few because I think that it is vital to rid the body of all of the underlying infections in order to heal the autoimmune response. I think that Lyme is
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