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ShaesMom

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Everything posted by ShaesMom

  1. Doc wants me to start taking this 3 times a day for 10 days a month for the Babesia. Do I have to buy it online-I haven't found anywhere locally yet. I'm also taking Ceftin, Nystatin and need to add Azith.
  2. Why, it takes no time at all. It's just that finding the mind you've already lost takes some time. But once you find that, wrapping the rest of the head around it is pretty easy.
  3. Thanks everyone. While I was expecting it - it has been a real kick in the teeth. My son took the gluten thing really hard so I'm not expecting this conversation to go any easier.
  4. You know how Dr K once had a description of the Pandas mom - Type A, good in math...sort of pushy and anal-retentive (he found a way to say that nicely)...well..I have a description of the Pandas/lyme mom and one of the key criteria is that you have a melt down/nervous breakdown at the time of diagnosis. By the time most of us have gotten to this forum, we're exhausted, broke and jaded. So a few good cries are a good starting point. I can't say I'm happy to be here, but there are a few "good" things about tick-borne dxs. First, you get to stop being paranoid about strep. You can let your kids go to jump zone and touch public door knobs and not banish the best friend who has a scratchy throat. Second, you can tell people your kids have "lyme" and you get nods of understanding (they don't really understand but it's not that queer look that you've gone crazy that you get when you say the word Pandas). Third, there are more LLMDs than there are Pandas doctors and you might not have to stay in a hotel every time you have an appt. with one. The bad news of course is that it's just as controversial, just as misunderstood and the doctors don't take insurance, so it can be just as if not more expensive. No one can tell you how long it may take to get your kids well. Some treat and see quick results. Some take longer. Some get better and better. Some plateau and need to look at additional causes (vitamin/mineral deficiencies known as KPU or pyroleuria), mold exposure, heavy metal toxicity, additional infections.... So no easy answer for what you may or may not face. But, I can say that despite the setbacks we've had since starting lyme treatment last fall (and pursuing Pandas treatments for 2 years prior to that), my kids are better. Not cured, not on a fast track, but certainly much better. I know there will be tough times ahead and I dread them. But at the end of each rough spot, there is goodness. As for herxes, they're as unique as the individual. We had a few mild ones and a few serious ones. You deal. You learn. You move forward. There are things you can do to lessen the severity and prepare your body. You can back off of treatment if things get too bad. Try not to freak over the prospect. It's like child birth. It might be a necessary process, but it doesn't have to be horribly painful and even if it is, it's rarely so painful that you stop having kids after your first. You deal. Then you feel better. One final thought - when this forum started last year, there were only a few people. Over the past 6-8 months, more people have joined and the group's knowledge has expanded. So there's less you have to discover the hard way and perhaps your journey will be a little shorter. So have a good cry but know it gets better once you wrap your head around it. Thanks for this-I really needed it tonight. One question though-how long does it take to "wrap your head around it"???
  5. I received the results from IgeneX for my ds(11) yesterday. He actually had more ++'s and IND's then either Shae or myself. All were Lyme specific bands except #41. (oddly enough when I had him tested through Enterolab for Gluten Intolerance he also came back more + than both of us and he had less symptoms). He has had questionable symptoms during the last two years and the list just seems to keep getting larger. The kicker for me was within the last six weeks he has come home in the middle of the night from two seperate sleep overs because he has had overwhelming homesickness. Separation anxiety was Shae's first symptoms with PANDAS so you can imagine how quickly the Panic button went off at my house. Puberty is right around the corner for him as well and I don't want that to be the trigger for underlying Lyme. So we will look into getting treatment started for him. Wendy---the friend of mine with the family of 4 out of 5 with Eosinophilic Eosphagitis had two members tested through IgeneX. Both had Lyme specific bands come back + & IND. They are pursuing treatment.
  6. Sounds like you are describing Peripheral Neuropathy. I often get the burning/tingling sensation in my arms and hands. Common symptom for LD. http://en.wikipedia.org/wiki/Neuropathy
  7. This info comes from a handout that was given to me by an LLMD in Mo: IgM antibodies indicate active, current infection. You may have IgM antibodies decades into this chronic infection. Every time Borrelia grow and divide it may restimulate your immune system to make new IgM antibodies.
  8. I already knew this but it really breaks my heart. I've always been really passionate about organ donation and am really sad that I no longer have that option.
  9. I hope Jenbug doesn't mind my sharing this info on her behalf.....I had an earlier conversation with her and the lab that ran the WB was Arup within the last two weeks. Band 23 is a double starred band and is believed to be outer surface protein C (ospC). IMO she needs to do further testing with IgeneX.
  10. Two great places to learn about immune deficiencies: www.primaryimmune.org Give them a call-they will send you all kinds of free info and set you up with a Peer Advocate in your area. The Publications link on their site is really informative. This is a really great organization. There is an online community available right on this site. May be worth joining and asking them some questions. I learned a lot when my dd was first dx'd. Need to spend some more time on there but just don't have the time! http://jmfworld.com/ Somewhere on the site you can find a 4 step testing procedure for Immune Deficiency. Looks like it is under the "About PI" tab.
  11. I had a very similar conversation with our Immunologist today although not necessarily in regards directly to Lyme but more so to the PANDAS side of things. He really emphasized that there isn't any perfect model out there for PANDAS, PIDDs, or any other illnesses because everyone truly is an individual and you have to take into consideration genetics and environmental factors among other things. What works for one person is not necessarily going to work for the next and there may be no real explanation as to why. It is my understanding that IVig is not a preferred nor recommended treatment for those who are only IgA deficient. I think my Immunologist would have a rather heated discussion with the LLMD who feels that IVig is "immune suppressing". I would like to be a fly on that wall! My dd had seven years to train her body to fight the LD on it's own and the LD has obviously been winning the war. I realize that our positive experience with IVig is not necessarily the norm for everyone but it has been our experience.
  12. We've been doing IVIG every 4 weeks for the last two years. My dd starts to have greater leg pain and fatigue the week prior to each new IVIG. She will physically start to feel bad enough between doses that she will ask if it is almost time for it again. We always notice a BIG difference in her physical capabilities and mood after each dose. She likes IVIG because it makes her feel so much better. Knowing what I know now and with the LD dx-I feel that if she had not continued to receive IVIG for the last two years she likely would have been in a wheelchair. Her pain was so severe before we started that she was often unable to walk, had completely stopped riding her bike & scooter and spent most of her time just sitting on the couch because she was in so much pain.
  13. Your DH isn't alone in is laughter. My dd has had chronic constipation since the age of 3 and I have 5 years of "poop history" in daily planners. Everytime my dd goes she asks me if I wrote in down. My dh just shakes his head & laughs. That history has helped many times at the Docs office!!!!
  14. What an awesome way to end the season! So happy for him. Several of the things you describe sound like what my son11 is going through right now. Baseball has been a real struggle for him this year as has pretty much everything. Questionable symptoms have been slowly growing over the last two years but with puberty also on the horizon it is hard to know if I should hit the panic button or chalk it up to growing up. Last week he spent the night at a friends house where is stays often. At 11:30 pm we heard the garage door open and in he walked. He told us that he had this strong feeling that he just needed to come home and was crying. SO-needless to say I've hit that panic button and hopefully on Monday the new LLMD will order the WB for him.
  15. A fellow EE Mom shared this with me this morning and I wanted to share it with all of you... Where Are the Parents? By Sue Stuyvesant, Parents Where are the parents? They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy. Where are the parents? They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks. Where are the parents? They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child. Where are the parents? They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own. Where are the parents? They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves. Where are the parents? They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families. They are busy, trying to survive.
  16. My son is 11 and has always complained of ankle pain. Sometimes he says they feel weak and other times they just hurt. He hasn't been tested yet but hope to get the order next week when we see a new LLMD.
  17. Good luck! Hope it goes smoothly for her.
  18. Thanks! How many do you take? I'm supposed to do 2 at a time 4 times a day this week; 4 pills 4x's a day next week and then 4 pills once a day. Seems like a lot. Do you herx on them? Yeah I know avoid sugar and gluten and dairy and fruit....What is there left to eat????
  19. I'm starting Nystatin today. Is it safe to take this at the same time that I take my antibiotics? Do I need to be on probiotics as well or is the Nystatin enough?
  20. http://www.underours...d-punishment-ct Edit from Sheila Rogers: This article is very supportive of Dr Jones, and I recommend that all those interested in this situation read it.
  21. My dd and I are both also highly positive for HHV6. Haven't talked with LLMD about it yet.
  22. My LLMD told me 10-14 days. I called IgeneX and they told me we only needed to be off abx if we were running a PCR or urine test. I went with the 10-14 to just to be safe.
  23. Very Interesting. I was bitten with rash 20 years ago yet my IgM had more postive bands than the IgG. I was positive for HHV6 but so far no other co infections have been positive via blood work.
  24. I would go with the LLMD and not the Infectious Disease Doc. The ID has been brainwashed to follow the CDC's strict standards. I took my dd to a ID about two months ago and got the standard lecture that PANDAS doesn't exist and LD is not chronic. I would recommend having your children tested through IgeneX. They are an independent lab that specializes in tic borne illnesses. the symptoms of Chronic Fatigue and Fibro are consistant with symptoms of Lyme. I was dx'd with Fibro many years ago and now know it is actually lyme.
  25. Who ordered the test for you and where was it done? Do you have a copy? I'm going to assume your local Doc ordered and likely followed the CDC's standards for dx which are greatly flawed and a false negative is very likely. It is best to have the WB done thru IgeneX-they specialize in tic borne illnesses.
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