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cobbiemommy

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Everything posted by cobbiemommy

  1. He tested CDC positive in Deceber of 2012 through Quest (of all places). Previously, he had numerous bands, but was not CDC positive. His gallbladder was not working very well, but I don't know if that is Lyme related or abx related. Due to the pencil necked bean counters at our insurance company, DS was denied IVIg after being precertified for it. He had three and was doing very well, but after they were stopped, he spiralled back down. We are not as low as when we started, but we are not doing nearly as well as when he was on IVIg or steroids. Because of the insurance problems, I need another piece of the puzzle to get them to authorize the IVIg. We cannot afford another IVIg with Dr. B. DS weighs in at 195 pounds and the cost of the medicine is just too much for us to handle at this point. So tired of this fight...
  2. We are and have been treating for yeast, so at this time I don't think it is the issue. He takes nystatin, pearls, and sacchromyces. The laughing and hand flap is almost like a seizure kind of thing, and only when exposed to certain stimuli. The reason I keep thinking autoimmune is he responded so very differently to steroids and IVIg. He was probably at 95 percent, which is saying a lot! He was more quiet, did not pick his nails, and was very mellow/happy and did not laugh like a maniac at immature for his age things. He would tell jokes and laugh at my husband's jokes, but as he is now, he is does not laugh at typical stuff, only very juvenile stuff. I think if the cam kinase was still elevated, it would boost his chance of getting insurance approval (reapproval) by demonstrating that the autoimmune component is still going on. We are seeing a neurologist at University of Kansas in two weeks who does testing for mitochondrial issues; so I am hoping he will be on board with Dr. B and Dr. J. If he is negative or dismissive; he will be dismissed. I don't take any criticism personally, here. I feel like this is a very well educated group of parents and we are all searching for the right answers, but there is not one right answer.
  3. For those of you with experience with Dr. B; will he order Dr. Cunningham's Moleculera Labs testing? I feel like we need to know what is going on in DS's brain. After almost ten weeks of IV abx for Lyme/Bartonella, he seems much the same: He is still talking to himself; he still is picking at his fingernails and toenails, and he still laughs hysterically (inappropriately so) at children's movies and while watching TV. My theory is that we are killing the Lyme, but there is an autoimmune component going on because he was sick for so long before proper treatment was begun. He has had a lot of joint pain and headaches as we have went through the IV abx process. Those symptoms seemed to have subsided, but the anxiety and OCD type stuff still seems to linger on. We have about 2 1/2 weeks left and I am starting to panic that this will not work...
  4. It helped when it was administered every eight weeks. It was a life saver, for him and for us.
  5. Sometimes I get down when I hear people talk about having to sit at a hot dusty ball field and watch their kid play baseball. While I do get that privilege with my daughter, I would love to have that honor for my son. He is getting better (slowly) and if he wants to try sports in the future, that would be great but I won't hold my breath. While he is tall with huge shoulders and muscles, he lacks the coordination and processing speed. He is fiercely competitive at everything (sigh).
  6. My son also responded wonderfully to steroid taper. It is wonderful to see your happy child for a while! Dr. B says that a positive response to steroids means an autoimmune reaction is happening and that IVIg should bring relief. That held true for us until Cigna pulled the rug out from under us. We have a CDC positive test for Lyme, and clinical diagnosis for Bartonella. Wish he could be taking steroids right now.... Ticks can be as small as a poppy seed, easily missed on a busy child. Best of luck to you.
  7. DS, 14, just completed day six of his second round of IV abx. He is soooo moody and irritable. Tonight he yelled at my husband and me because we did not want him touching his PICC line with unwashed hands. I admit we yelled back, which set off a round of crying, and door slamming and it just generally broke our hearts. DH, who rarely cries, was crying in the bathroom as he was getting ready for bed. He has to be up at 3 a.m. and has been working 12 hour shifts plus doing farm chores. He then went and consoled our son for almost an hour. He is so much more of a good father and husband than I ever gave him credit for... DD, 16, has been taking Clindamycin/Quinine for four days has developed a horrible case of sinus congestion and cough. We can't decide if it is a herx or some other illness that was already starting. She sounds horrible and has blown her nose so much that it is red on the end. Praying for a healing rest for all of us and for all of you.
  8. I don't believe a Benadryl will produce any lasting harm and may bring her some relief. You need your rest as well.
  9. My son is IGM positive despite being infected for a long time. He has a persistent infection and is now on IV abx. Nastiness and irritability are definitely part of the herx response. Add in some teenage hormones and look out! We thought our son was Pandas, and maybe he was, but he definitely is a Lyme patient with all of the attending symptoms. Explain to your daughter that she has a bacterial infection that is real and has real symptoms. It is not some theory (that I believe in) called Pandas/Pans. She has Borreliosis; but the good news is it is treatable!
  10. DS, 14, had good blood work results and so we have restarted IV Abx. He wants to take them now. During the week he was off IV abx, his energy level dropped in a big way. I think he now sees the benefit of IV abx; also he just wants to be done! DD, 16, has started her meds for Babesia. The very first day, she became very dizzy. I really don't think this is a side effect, I think it is a herx. As bad as this sounds, I am going to dole out any medication for her because she thinks she can just take it whenever she remembers. It was really sweet because her brother told her that if she would just keep taking it, the feeling worse part would go away and then she would feel better than before. It was great to hear him try to reassure her and to know that he feels better about taking his own medicine and just feels better in general.
  11. There are success stories; although ours is still being written. DS, was terrified of storms, birds, even clouds (that could become storms). He was always wanting to get even for a perceived wrong. He also was very defiant and did not understand why he had to do chores as part of the family unit. Today, he is taking IV medication for Lyme, oral medications for Bartonella and yeast, and an antidepressant. While his grades do not match up to his potential; he no longer qualifies for an Autism diagnosis, he will play outside with his dog, walk the 1/4 mile to his grandmother's house alone and does not have horrible separation anxiety. He plays in the school band and wants to take up wrestling. He still has challenges and some fatigue, but I know that we are in a far better place than we were four years ago. Sheer determination and a lot of money have brought some healing for our son. We are far happier and wiser than we were four years ago. Keep the faith that you will make the difference for your child.
  12. For us, the answer is that IVig did not bring lasting success after about six weeks. We thought we were dealing only with strep. We were wrong. DS, now 14, tested positive for Lyme (Borrelliosis), Bartonella, and Mycoplasma Pneumonia. Steroids also helped a great deal, but they were also only a temporary fix, and not recommended when dealing with Lyme. This is not a scientific study, but it is scientific proof of infection. Are you looking for a scientific study? At this time, you probably will not find it. Our stories are considered anecdotal. It does not make them untrue, it just means it does not have hard data with statistical analysis.
  13. I think this is an exciting verdict for those of us in the Lyme world-and for all those who will be.... As I recall from the Pamela Weintraub book, part of the controversy is being caused by several researchers patenting part of the proteins for the Borrelia Burgdorferi spirochete. If this ruling makes that patent invalid, that would open up testing criteria and allow for better detection of the microbe. I know this is a long way down the road, but the road just got brighter!! Opinion: Patenting natural DNA never made sense By Art Caplan, Ph.D. The Supreme Court has finally done what should have been done years ago -- declared that genes which naturally exist in all of us cannot be patented. For years Myriad Genetics, the company that sells the genetic tests used by Angelina Jolie and thousands of other women to assess their risk of breast cancer and ovarian cancer, has held back the development of better tests and access for many women to testing by invoking their patent claims on key genes. Now the Supreme Court has rightly said that kind of patent is not valid. Patenting a naturally existing gene never made any sense. Sure, it takes work to figure out what genes do, but the rewards for that are publications, tenure, professional honors and even a Nobel Prize -- not a patent. Patents should be given not for discovery, but for inventions: What genes can you change; what test kit can you build; what program can you run to screen genetic risks? The implications of the decision could be far broader than Myriad, whose stock price went up after the ruling. Many companies have taken out patents on genes not only those found in humans but in animals, microbes and plants. All of these are now in question -- which may cause some reevaluation of the worth of some companies who have been touting their ownership of genes to Wall Street. NBC's Pete Williams shares details on the Supreme Court's unanimous decision that says human genes cannot be patented, but Synthetic DNA is patentable. The decision will also give a bit of a push to the field of synthetic biology. In this area scientists try to change, tweak or create new genes -- usually in viruses or bacteria -- to make novel organisms that have valuable properties like making proteins for food or acting as vaccines against disease. The Supreme Court explicitly encouraged patents for this type of invention and it is likely to be where the action is in the field of genetics. It took a very long time to get a sensible patent policy in place in the United States and other countries. The point of patents is to reward practical inventions and useful creations, not to let people profit from finding what naturally exists in the world. Now industry and lawyers will have to work to reset the rules since the days of the Oklahoma land rush laying claims to bits of human DNA have been called to a halt. Arthur Caplan, Ph.D., is the head of the Division of Medical Ethics at NYU Langone Medical Center.
  14. How do other parents cope? I am just wearing down after fighting this fight for so long. DS, 14, has been sick since age 4 (although we did not know it). He has been diagnosed since 2010 with Pandas, then Lyme, then Pandas, Borrelia (Lyme), Bartonella, and Mycoplasma. We just started IV abx a month ago; we had to stop for a week because of neutrophil and red blood cell irregularities. His energy level went way down after one day of missed IV antibiotics. DD, 16, was scratched by a feral cat right before she went to camp at the Lake of the Ozarks in 2011. She came home with a Bartonella like rash at the sight of the cat scratch Lake of the Ozarks is endemic for Borrelia in Missouri. She will not comply with taking her antibiotics. She has gained 50 pounds and has a HORRIBLE attitude about everything. She doesn't seem to accept that her brother is really that sick and that she also needs to take her meds. She was recently diagnosed with a hormone imbalance causing horrible periods (the worst of the worst) and is now taking a hormone to try to correct the imbalance. Although my son is probably the sickest and has been the worst emotionally in the past, my daughter is the source of much drama now. How do you cope with a child with memory and processing as well as fatigue issues? How do you deal with a young lady that won't take her medication and won't acknowledge that she needs it? How do you deal with a teenager that resents the other's illness? What activities can a teenager do with a PICC line in their arm? He has a ten pound weight restriction and all contact sports are out.
  15. In our experience, Rifampin takes a while to finish the job, but you might start seeing some results within a month. Generally, it needs to be combined with another med, such as Biaxin, Zith, or Doxy. to really do it's best. Augmentin also helped us see some good results. If you do not have an LLMD, I would strongly recommend that you get one.
  16. Hubby is a farmer, but absolutely brilliant with fabricating tools, machinery and calculates all of his yields, ratios, and costs/profits in his head. In my previous life, I was a history teacher.
  17. No way would I accept a bipolar diagnosis at the age of three. My son had changes in his personality from age three to age four. It took us too many years to figure out that he had Lyme/Mycoplasma/Bartonella from a tick bite. He also started improving on a trial dose of Zithromax. If antibiotics are improving the situation, even if it doesn't last, you are either dealing with an infection or an autoimmune response to a previous infection. Run to an LLMD or one of the docs listed on this board. If you post your state, someone will be able to point you in the right direction.
  18. I'm sending you prayers for a speedy recovery and lots of good wishes for the days ahead. Peace be with you.
  19. FWIW, this is our experience. We saw Dr. B and he recommended we also see Dr. J. We had previously seen an LLMD (2) who diagnosed son with Lyme/Bart and possibly babs. We paid for a lot of new testing and paid for a follow up phone consult but I can't remember how much. The two doctors worked together and shared all the lab results. One doctor's office forgot to send paperwork to the other, so I had to call and remind them. I'm not condemning them; but you must be proactive to make sure that all of the info goes where you want it to go. Bottom line is you need to speak directly to Dr. J. Here is a small citation discussing the relevance of Band 31 by Carl Brenner. A second criticism of the CDC Western blot criteria is that they fail to include the 31 and 34 kDa bands. This does indeed seem like an odd decision, since antibodies with these molecular weights correspond to the OspA and OspB proteins of B. burgdorferi, which are considered to be among the most species-specific proteins of the organism. So why didn't Dressler et al. include them? Answer: These bands tend to appear late if at all in Lyme disease patients, and did not show up with great frequency in the patients that the Dressler et al. group studied (though they did show up sometimes). As a result, they weren't deemed to have much diagnostic value and didn't find their way onto the CDC hot list. However, while the absence of either of these bands from a patient's immunoblot result does not rule out Lyme disease, their presence is hardly meaningless. Thus, many Lyme disease experts believe it is a serious mistake to exclude these two antibody proteins from the list of significant bands. The CDC's decision to do so seems particularly strange in light of the fact that it is the OspA component of Bb that is being used as the stimulating antigen in the ongoing experimental Lyme disease vaccine trials. As one immunologist remarked shortly after the 1994 CDC conference, "If OspA is so unimportant, then why the heck are we vaccinating people with it?"
  20. I still fall asleep by my ds, 14, when things are not going well. I look at as a small price to pay for sleep for him and myself. I feel for you and am sending hugs your way!
  21. Everything looks great and the answers are concise. Would there be a way to put a PANS question and answer on this forum? Or is it even appropriate? I would just like newbies to know that mycoplasma, lyme, or certain viruses can also prompt biological responses similar to PANDAs. If I am out of line, or this is addressed somewhere else, my apologies.
  22. My DS did wonderful after IVIg, but still had infection. I would tend to believe the first doc who wants to make sure all infection is gone. Rifampin is an old med and has a good safety record, but I would discuss any concerns you have with the doctors involved.
  23. Sometimes a herx will make all symptoms worse, and sometimes it will just make a single symptom worse. It may be a symptom that had been getting better, but suddenly takes a turn for the worse and then resolves. For us, it almost always is emotional issues. We still have the bartonella rash; it has flared again after being almost non-existant. How many of those little buggers could there possibly be?????? :blink: Today, he was so much better. He asked if he had a nervous breakdown. I said no, just a little meltdown, but that it was OK. Summer vacation starts today, so that will take a lot of the stress off of him!!
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