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Everything posted by GatsMom

  1. I hear ya! We're in the same boat, he found my son's, too. We've had to discontinue abx for a couple days because of a little stomach bug and his inability to eat much less take meds BUT week that we've been treating for myco instead of chasing down strep, he had a lessening in severity in all areas of his illness. I pray you have a wonderful result now that you'll be treating the right pathogen! Good for you!
  2. My son is another mycoplasma kid, discovered because of Dr. T. Yes, it does mean a different abx...a macrolide..like Azith or Biaxin (clarithromycin). Mine didn't respond initially to Azith but had a nice result from his first 5 days of Biaxin. We've had to abandon all meds in the past 48 hrs because of a stomach bug (which is really spinning his anxiety through the roof). My son is also completely asymptomatic with his mycoplasma...only his PANDAS symptoms of ocd, anxiety, tics, etc. Had Dr. T not tested for it, we would have never known.
  3. I'm so sorry. I have a teen, too, though his first exacerbation was at age 8. I think many, if not all, of us know the feeling of running your head into a wall in an attempt to get help for your child. Have you considered contacting Dr. T or Dr. K? My son is a patient of Dr. T's and while he's sometimes tough to get a hold of, he's very dedicated to these kids and you won't have to work to convince him of the impact or severity of her symptoms. Gat's mom
  4. As you know, Michael, we're right behind you. This is day 7 of biaxin 500mg twice daily for Gat. I wanted to wait to post, officially, on his last 7 days until I was really certain (I think we all have varying degrees of jinxing our success) but today, even Gat said in the context of a discussion with his girlfriend, "...and now that I'm getting better...". We are continuing to see gains that sound much like yours, Michael. Dr. T told me from the onset when looking at Gat's labwork surprise that we should see improvement within a few days once starting the right abs and we certainly have. Gat's initial Rx for Biaxin is for 10 days but he also gave us 2 refills. I will be contacting him to report in but will be pushing to finish a full month on Biaxin. Also like you, Gat is forever in a fight with yeast. We've got it barely under control but it is a day by day issue and dropping the ball for even a day will have serious backlash on him. In my opinion, we've come too far and waited way too long to get on the right abx to quit too soon. I know once the abx are discontinued or brought down to a prophylactic dose, I can get yeast under control. We have NEVER taken any medication in the 8 years that we've been dealing with this that has produced a result as noticeable as what biaxin has. I've read that folks can have a myco p for many years, often unaware of it because of nonclassic symptoms. Since Gat never got back to 100% after his last exacerbation 4 yrs ago, I'm inclined to believe that its possible he may have had some infection underlying all this time. One would think it would take more than 10 days or 2 wks to rid yourself of an infection the body's had on board that long. We have a long way to go, but this is the first forward movement we've seen in 9 wks of sliding backward (including 17 days of augmentin 1000mg xr twice daily). I really think you are on the right track, Michael. Keep up the good work! Gat's mom
  5. Have thought about you many times since reading this earlier today. Have nothing to add except to say that you did a great job of handling a situation that absolutely had to be handled. Stay strong and know that others have been where you are and are keeping you in their thoughts.
  6. Good for you! Good for Lauren! They go through so much. I hope this is a huge success for her.
  7. The interesting thing about your question to me is, it reminds me of how being sensitive to these things as I have been for so many years puts me out of touch in how these things actually work, in that I've been avoiding them. What devices are involved in your setup? If it's just computers and the wireless router, then I think you'll have it covered when you address them. I'd want to make sure the wireless router wasn't sending out any signals. If it has no power, it can't do that, so sounds like that'll work as long it doesn't also have a backup battery. Computers set up for wireless also send out signals if they are left on, unless you flip the switch telling it to not do wireless. Are you using one of these hookups from a phone line or cable line? Is there a connection from those lines to the wireless router, or is the router the connection? That's where, never having seen one, I don't know, but if there is a third piece in the setup, you might want to disconnect it, or find out (from a knowledgeable source or from a meter) that it is harmless. Michael No battery backup to my router. Unplugging it from the wall shuts the thing down completely and there is no wireless access in the house except in one spot in the living room where we can pick up a neighbors. I make him charge his computer now in the living room (about as far from his room as possible). Last night I threw the breaker to his room after he was asleep. He was none the wiser that his phone was not actually charging as he thought it was. He has a dimmer switch on his ceiling fan but its the kind that snaps all the way to an off position so I'm hoping that's ok. My guess is that kid was exposed to less emf's last night then he has been in a long time. It certainly won't do him any harm and hopefully it will help deliver some relief. Thanks for your input, Michael.
  8. That, or there's the die off concept that when bacteria or fungi are killed in large quantities (at the hands of the abx) there is a load of toxic remains for the body to have to process. I couldn't begin to venture which is going on though I know either would be considered a step in the right direction. As sick as this kid is, I know his body has been given a huge chore in recovering itself. In my heart, I believe fully that the sooner you are on these pathogens the easier the recovery would be. We were 8 hard weeks in which is an improvement over being many months or years in, I guess. I know we all have it but its so hard to stay positive watching your child endure something to cruel with very few cut and dry answers.
  9. Vickie, I was thinking just like you. Last night I had my Gat's dad go out and get my cough medicine (one without a drowsy quality & one with as well as a selection of cough drops). I had decided I would either wait to hear from Dr. T and his suggestion and try not to use either until then (unless things got crazy). Like you, I believe fully that a cough is the body's way of casting off a toxin of some kind (like a sneeze) but I had to be ready to weigh out the collateral damage, emotionally, of being taken to a high level of anxiety. Thankfully, it never came down to that decision. He did take his second dose for me last night with little grumbling. No coughing even as he tried to go to sleep. He also fell asleep within 30 minutes of going to bed...the best time in nearly a month. He woke up at 4:45 for a drink and I though there would be coughing (throat clearing and sniffing) as he tried to get himself back to sleep but there was none, though it did take him nearly an hour to get back to sleep. He woke up for good (wide awake) at 10:30. Ok, that's 2 days in a row of less than 12 hrs of sleep. He showered (with the door closed!) and looked for something to eat. Usually it takes hours for him to find something he's willing to eat. My biz partner was a respiratory therapist in her past life & I talked to her about the cough. She said that in many pneumonia patients who were surpised to learn they had it because they had no horrible cough or wheeze, she had to inform them that starting the abx would bring about those symptoms for a few days. Today we're praying that his otherwise strong body is fighting this myco p like a champ and maybe our isolated couple hours of coughing yesterday will be the worst of it. So for now, the cough meds stay unopened.
  10. Boy, am I happy for you, if that makes sense. I can hear the hope in your words. He's a great doc, no question about it and who knows what he'll dig up when looking more closely at his immune system. You have direction and that's so important. By all means keep us posted. I'm sure sorry he's feeling crappy now but hope the downtime can supply you with some peace and time to focus on the answers that are surely coming. Gat's mom
  11. Lyme mom and Vickie: Thanks so much ladies. It's been a day here. I did read that article about the Gulf War Illness a couple days ago..very interesting stuff. I didn't know that Azith and Biaxin were good choices for Lyme so I do feel better about that. I'll be pushing for a repeat of almost all bloodwork in a month or so which I'm hoping will support on paper the recovery in my son (how's that for sounding hopeful?) Michael did mention to me his cough around day 7...thank Heaven he did too or I would have lost my mind today. I do believe that a herx shows a step in the right direction. I couldn't guess as to the mechanism behind a cough in an asymptomatic myco p kid except to say that the antibiotic is getting to the infection and the cough is the body's way of trying to rid itself of it. I haven't heard from Michael as to the duration of his cough and I just can't find enough among our peers to see what I can expect for my lad. I will say this, his cough started within an hour of him being awake. The meltdown was after an hour of so of coughing. Several hours later, it was gone. He says if he takes a very deep breath he feels like coughing but he hasn't made a noise since early afternoon. We've discussed logically the cough, that it doesn't mean in an way vomiting and I showed him the labs and all the data showing this medication for that infection to try and instill some faith. He's just been through so much and is old enough to know how many dead ends we've been down. He's an otherwise strong, healthy 16 yr old. Maybe the cough was the effect of sleeping still all night and we'll only have it a time or so before the abx kill it all off and he can have some relief. Again, it is so good to have support. Thank you, thank you! Gayle
  12. 17 v 1! Really!? I'd call that a little more than "significant". That is extremely interesting and the article mentions other infections like Borrelia Burgdorferi, which is the real name for Lyme Disease. I have read that 60 percent of lyme patients are "co-infected" with Mycoplasma P. The problem is the tests for Lyme are so unreliable that you could have it and not know it. I am pretty sure that the drugs used to treat lyme, treat Mycoplasma, but not sure if it works the other way around. Having multiple infections apparently makes it hard to get rid of lyme and the same is probably true with respect to strept, as you mentioned. When my son's recent labs came back and he was negative for Lyme, I wondered how accurate that might be. I've read your posts about how to go about testing for Lyme through different labs. I pray to not have dig for more co-infections after treating mycoplasma. I spent the entire day looking for literature on possible healing regressions (herx reactions) in asymptomatic patients when starting antibiotics to treat for mycoplasma. Not an easy task. He had a bad cough (most dry) shortly after waking up. It was not there yesterday. It triggered every vomit fear in him and was the catalyst to a huge meltdown and a day not nearly as beautiful as yesterday's. Now he's balking at taking the biaxin. I can't take much more.
  13. 17 v 1! Really!? I'd call that a little more than "significant".
  14. Boy do I wish I had this information four years ago...and eight years ago when the whole nightmare got underway. Mycoplasma pneumoniae infection and Tourette's syndrome. Muller N, Riedel M, Blendinger C, Oberle K, Jacobs E, Abele-Horn M. Hospital for Psychiatry and Psychotherapy, Ludwig-Maximilians-University Munchen, Nussbaumstrasse 7, D-80336 Munchen, Germany. nmueller@psy.med.uni-muenchen.de An association between infection and Tourette's syndrome (TS) has been described repeatedly. A role for streptococcal infection (PANDAS) has been established for several years, but the involvement of other infectious agents such as Borrelia Burgdorferi or Mycoplasma pneumoniae has only been described in single case reports. We examined antibody titers against M. pneumoniae and various types of antibodies by immunoblot in patients and in a sex- and age-matched comparison group. Participants comprised 29 TS patients and 29 controls. Antibody titers against M. pneumoniae were determined by microparticle agglutination (MAG) assay and confirmed by immunoblot. Elevated titers were found in significantly more TS patients than controls (17 vs. 1). Additionally, the number of IgA positive patients was significantly higher in the TS group than in the control group (9 vs. 1). A higher proportion of increased serum titers and especially of IgA antibodies suggests a role for M. pneumoniae in a subgroup of patients with TS and supports the finding of case reports implicating an acute or chronic infection with M. pneumoniae as one etiological agent for tics. An autoimmune reaction, however, has to be taken into account. In predisposed persons, infection with various agents including M. pneumoniae should be considered as at least an aggravating factor in TS. PMID: 15590039 [PubMed - indexed for MEDLINE] 1: Pediatr Neurol. 2004 Aug;31(2):119-21. Links Restless legs syndrome: association with streptococcal or mycoplasma infection.Matsuo M, Tsuchiya K, Hamasaki Y, Singer HS. Department of Pediatrics, Faculty of Medicine, Saga University, Saga, Japan. Group A beta-hemolytic streptococcal infections have been reported to cause neuropsychiatric symptoms, such as chorea, tics, and obsessive-compulsive disorder, presumably through autoimmune damage to basal ganglia. Mycoplasma pneumoniae infections have also been reported to cause damage to the basal ganglia. Restless legs syndrome is a movement disorder with focal restlessness, an irresistible desire to move, and exacerbation by long periods of sitting or lying. We present three children with transient restless legs syndrome-like symptoms possibly associated with group A beta-hemolytic streptococcal infection or Mycoplasma pneumoniae infection. One of three patients had persistently elevated enzyme-linked immunosorbent optical density values against human caudate and putamen. PMID: 15301831 [PubMed - indexed for MEDLINE]
  15. How about melatonin in addition to epsom salts baths?
  16. Does anyone know if merely unplugging my wireless router from the electricity in the wall is enough at night? Many thanks
  17. I agree. While I can't control what he's exposed to in the community, I would think it would be so beneficial to contain exposure while he sleeps and hopefully make it easier for his body to do the healing its trying to do.
  18. I have one of those "no outward symptoms" kids. Both the strep of middle school and the myco p of this exacerbation have been completely and utterly without classic symptom presentation. How to handle the fact that is often sick without noticeable signs (until things are really bad) is what we'll be working on down the road. Right now my main objective is getting this myco p out of his system and seeing if we need to address the slightly elevated ASO titer we had this time. I should mention, he slept 9 hours last night instead of the usual 12. Way less throat clearing at bedtime and no apparent anxiety though it did still take him til nearly 1a to fall asleep. Today is day 3 of Biaxin and half dose of steroids.
  19. Four yrs ago, the very week I found PANDAS during my nightly online symtpom cluster searches, my exhusband was talking to his 20'something neighbor who was asking how Gat was doing knowing how sick he was. She was standing with a friend about the same age. When my ex explained that I found what I was sure was it (PANDAS) the young girl with her became teary and explained that 10 yrs b4 she had been diagnosed with it. She told my ex about the ###### she and her parents went through and by then all three of them standing there were in tears. He said that although he was almost afraid to ask, he felt he had to and said, "What is your life like now?" Then she really cried hard and said, "Tell her and your son that my life is beautiful now." She went on to say that she recovered fully, her parents recovered fully and they all lived happily with it just being a memory. He never saw her again but learned that her name was Colleen. I have used that conversation as my anchor on more than one occasion and refer to her as The Angel, Colleen because that was surely an act of Providence to stumble onto her in our one horse town.
  20. Melanie, Azith does treat it, we just didn't see a result in my son with it. Biaxin, I believe, is a bigger gun. Both antibiotics are in a class called macrolides which is the class used to treat myco p. I'm wondering, like you, if the rest of the family should be tested/treated. Gat's mom
  21. I learned something interesting about GABA from our herbalist. She gives what she calls the GABA challenge test when she suspects a problem with the blood brain barrier. She gives the GABA and if the patient feels any sensitivity to it (relaxed, calmer etc) she knows the patient has an BBB issue. She told me the GABA molecule is large enough that it should not be able to pass across the barrier and if it does and an effect is felt it's a not a good sign. The first order of business she would recommend with someone who does respond is switching to a gluten free diet. Just thought I'd throw it out there in case your kiddo sees a benefit from the GABA. I've never cross-referenced this information, just passing on what a very bright practitioner told me.
  22. We'll see, I suppose. This kid is having the best day he's had in the better part of a month. The biaxin is specifically to treat mycoplasma. I don't know if it is particularly useful for strep. I do know that Azith can work for both strep and myco p but in my son, his 17 days of azith didn't seem to produce a result and certainly nothing like what we've seen so far today. We also started a 5 day dose pack (which we are doing about about half strength due to his sensitivity to stimulating meds) so I know that, too, may be to credit for his good day...or it could just be a good day. We'll see how things go tomorrow. I'm just so thankful that Dr. T tested him for this and the other pathogens. He had no symptoms that could even remotely be considered pneumonia prior to or during this exacerbation so we would have never thought about myco p had we not tested for it.
  23. Agree, concise and easy to under. Should be a required read for anyone who is going to work with kids.
  24. If we can come up with a united subject to vote on, I know my camp could supply hundreds of votes. I'll bet we all could. I saw that during superbowl, too. Great idea, P.Mom
  25. Mycoplasma pneumoniae in the case of my son's labs.
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