Jump to content
ACN Latitudes Forums

lfran

Members
  • Posts

    640
  • Joined

  • Last visited

  • Days Won

    1

Posts posted by lfran

  1. So sorry to hear this.

     

    One thought -- We are all strep carriers in our house, but when I got actual strep this winter, penicillin didn't help. They put me on cephalexin and that did it.

    laure-have you spoken with Dr J's office recently.

    I'm just wondering if the Bactrim was prescribed for the lyme and Bartonella? Does the Bactrim cross the BBB? My dd is on Minocin for the co-infection and was recently increased to help with ocd. Also, is she worse in symptoms since the bent pills and large probiotic dose? Is it too much in detox, but not enough drainage. This is not coming from my experience - just remember reading how important it is to rid of the critters after detox.

    I would call and see if you can get in earlier for your follow-up. Thinking of you!!

  2. You can buy a magnesium sulfate cream which is supposed to be very helpful at getting magnesium into the body. Or you can make your own from Epsom salts, but I never had any luck with that. Magnesium is supposed to be well absorbed topicaly. Kirkman makes the cream, I think.

     

    I think Magnesium is supposed to be important, because it is what the BB bugs feed on, so they use a lot of it up in Lyme's cases....but then, aren't we just feeding the bugs if we supplement with Magnesium?

     

    I was recommended to take 2,000 m.g. per day by our LLMD and to back off if diarrhea occurs. They said it would help with joint pain. Unfortunately, it is the one vitamin I do not get too regularly..... I have a psychological barrier at 50 pills per day. I am at my limit. When/if I do have trouble sleeping I take about 600 m.g. of Calm and able to fall back asleep right away. It works every time. Same for my kids. I use the Adult version of Calm for my kids. You might consider upping son dosage at bedtime with 'CALM'. I think it could possible help your son even more and you 'when you are up at night thinking'.

     

    -Wendy

  3. If you have unexplained tremors, you might want to consider the possibility of hyperthyroidism, which can cause hand and arm tremors. Kids can get hyperthyroidism. Here is a website for test recommendations: http://www.endocrineweb.com/conditions/hyperthyroidism/diagnosing-hyperthyroidism-overactivity-thyroid-gland

     

    It's an easy (and I think not too expensive) blood test. Make sure they test T3 and T4 along with the TSH. There is some difference of opinion as to normal levels of TSH. I am hypOthyroid and always feel best at TSH of 2.0 or lower (as do many patients). The "published" range of normal is higher but a lot of specialists agree with 2.0 or lower. I have been cautioned to look out for tremors if my medication pushes me into a hypERthyroid state.

     

    On a side note, I took my DSs to 2 local neurologists (DS18 to an adult one who specializes in movement disorders,) because they both have increased tremors, with my younger one's looking more and more like Parkinson's type.

     

    The adult one said she wasn't worried about the tremors, because they were non-functionally limiting, but only after making her opinion (not asked for, mind you) known that she doesn't believe in PANDAS (told us prior to that that yes, she had heard about the "controversary surrounding PANDAS", when my DS18 asked her if she had heard of it.)

     

    My response...1) We're here for the movement issues not the PANDAS issue...we have doctors to treat that, and 2) I can give you quite a bit of research to show it very much exists if you'd like (she refused to take it!). BTW...major hospital.

     

    DS15 was seen by a local peds neuro who saw his tremors, saw his increased chorea and saw him having difficulty heel/toe walking. When looking at video, he decided it wasn't chorea, because his arm was going in large circles. Couldn't offer me an explanation, but then told me that he didn't know what to do to treat it, because he doesn't treat PANDAS. I pointed out that I didn't bring up the term PANDAS...just described all the symptoms/onset, and told him what treatments have worked/not worked. HE'S the one who brought up the term: "PANDAS." (again...I was just there, because of my concern for the Parkinson's-like tremors.) He got upset, saying that he had been afraid to call me back (I called back after a week of not hearing from him) and in the end, refused to help my son.

     

     

    So...ladies and gents....moral of this story is....we are really and truly on our own. Other than the true angels who are putting their lives out there to help our kids, it truly doesn't matter how mainstream our children's symptoms are...they WON'T BE TREATED AS LONG AS THAT POSSIBILITY OF PANDAS EXISTS!

     

    Oh, also, AmySLP, we saw Dr. L. a week ago, and she didn't seem terribly concerned about the tremors, either. I guess there's really nothing that can be done for them, so hopefully when we get our kids' conditions under control, the tremors will go away, too.

  4. So, so sorry. You are in my thoughts and prayers.

     

    Thanks Emerson & Everyone else!

     

    Well, the knock to the door came today. On the other side was the county sheriff to deliver the court summons we knew was coming. I thanked him for coming in an unmarked car!! Maybe I made his day!! I was ok until I sat down & started to read it. It smarted. :-( I cried.

     

    For those inclined to pray, we visit the attorney ad litem tomorrow at 10 a.m. We will decide if we stay with her or hire his own attorney since the summons says we have to pay for her anyway!!! Guess I was naive. I won't give a bunch of details right now. Tired of explaining. Pray the visit will be beneficial. Pray that Evan can be dismissed so he can get the IVIG he needs. I'll share more when I know it. I have a folder prepared to give to her. You guys are the greatest!

     

    Dawn

  5. This is discouraging/frightening. I am just about to start Lyme treatment for DS9. He is postive for lyme via urine antigen test, equivocal on WB. He has been doing pretty well the last few months, so was holding off on treatment. Last few days, huge increase in tics. One example, he plays an instrument, and couldn't practice last night because tics were so high. Just sent off blood for coinfection testing yesterday. BUT...also had cransiosacral therapy the morning of the day the tics started to increase...and there are people out there who think that neck/jaw misalignment plays a huge role in tics/tourettes. So...could that have triggered it?

     

    When he was on zith/augmentin last year for possible pandas, he initially did worse, then started to "reminisce" about tics and fears that were gone. When we had to stop the abx, there were huge emotional repercussions that lasted for months. Panic attacks, anger, etc.

     

    WHYYYYY do our kids have to go through this??? And my insurance won't cover any of this -- appointments, meds, etc, so every path we take has to be thought out soooo carefully. And my son is sick of being taken to doctors. And there is NO CLUE which of the 15 different paths is the right one.

     

    Sorry. I too have been up in the middle of the night recently. Any encouragement is welcome.

     

     

    Well it feels good to know we aren't an anomaly here, even though it shakes my confidence to know there are others not achieving health who are following the same protocol as we are. So IVIG question - we are not mentally ready to subject her to that yet....but a month ago or so there was a long thread of folks who had success with IVIG. Complete success, never to return to the doctor. I think... Any posters out there who can confirm? I guess I'm thinking that if we could get her titers down, the OCD would calm down, even as we continue to treat for lyme.

  6. Wilma,

     

    If blood tests are becoming a problem, there are a couple of urine tests you can do. One is usually done after provocation with antibiotics or herbs (the DOT BLOT) and the other is done without antibiotics, I think (PCR). Igenex runs both of them -- you can call them and ask.

     

    Like the blood tests, they don't always show positive -- I think only 30% of people with Lyme show positive, but it's noninvasive and not *too* expensive. They like 3 samples, to maximize catching the antigen, but you can do one or two -- we did two, at $70 each for the dot blot. Not sure what the PCR cost is.

     

    My DS9 took the urine dot blot after a course of antibiotics and came up positive, even though his western blot had only a couple of bands show. (Actually, one of the two samples was positive, but that's considered enough).

     

    Just a thought for an alternative test route.

     

     

    My child's psychologist wanted us to go to the meeting, because it was all about microbes, and she felt it had a lot of similarities to PANDAS. I absoulutely keep thinking of the Lyme component. I need 2 really feel sure that it is not an issue before the IVIG... but how many times do you keep testing and looking for the Lyme? Seems like it could go on for ever. And Dr. Beal said you may never know for sure. It is not clear cut and very confusing for me. I don't think my girl is going to let me draw blood too many more times. She is at the end of her rope. Don't blame her of cours. I really have to pick and chose the labs I do at this point. Advice always welcome.

     

     

    If you do the IVIG, this is a time to have blood drawn without another poke. The doc can order the labs and then the nurse, or whomever will get the blood after the catheder is in and before the IV. We have had this done for this very reason. An idea. Dawn

  7. One thought re: the diarrhea. I talked with a compounding pharmacy about how to best give the meds and they said liquids are absorbed more quickly than pills and thus not as much of them reach the guts, so they are thought to be less difficult on the GI tract. Just a thought...

     

     

    After five plus months of Doxy, we are starting Rifampin. Due to insurance issues, we stopped going to Dr. number 2 and went back to Dr. number 1 (both are LLMD). #1 immediately took DS off all antibiotics, gave him a four day antibiotic holiday and is starting him on Rifampin for Bartonella. Rifampin is something I had begged #2 to prescribe for DS because of his rash and behaviors. The greatest part is that I did not bring up switching the medicine, #1 brought it up right away. He said that if one month did not bring about significant improvement then we would add tetracycline into the second month. We should see big changes this month.

     

    The antibiotic holiday was so nice; he felt better, no diarrhea, no timinig all the meds and supplements, etc. I realize now what a strain this disease is not only on the patient but the caregivers.

     

    Here's hoping that his bacterial load was lightened after all those months of Doxy. Hopefully we will sail right through this time on Rifampin. Prayers are always welcome!!!

     

    Cobbie

  8. Just following on the EE info, which I just googled and have a question.

     

    For the last 25 years, every once in a while,when I am eating, my throat constricts for about 1.5 seconds. Totally closes, then it opens and everything is normal. Really scary, but have learned to live with it. Always when eating bread or a bagel, never with anything else. But, I can eat these foods hundreds of times and be fine, and then wham! it happens. Only occurs about 5 or 6 times a year, so not frequent -- but for 25 years now! Not classically allergic to wheat or milk -- had those tested.

     

    Does this sound like a variant of EE? Thanks!

     

     

    I don't want to derail the thread, but I TOLD you I had all the symptoms!! It keeps getting worse too- I don't know if the treatment is bringing it out or what, but.. !!!! I do think the more aware of it you become, the worse it is- it totally compounds itself-- you choke, then you're afraid you might choke, so you choke again which makes the fear worse. Geez.

  9. Sorry, I know I have seen this info before, but can't find it.

     

    I want to do coinfection testing:

    Babesia, Bartonella, MycoP, and Erlichia

     

    Which labs are best for which?

     

    Igenex has coinfection panel for Bart and babesia. Should I go there for that?

    Is MycoP lab-dependent? Otherwise, my HMO lab can do it.

    Who does erlichia well?

    Any other coinfections to request?

     

     

    I welcome any advice. Thanks!

  10. So sorry to hear what you are going through.

     

    I don't have an attorney referral for you, but here are some links that might help you.

     

    1) The courts maintain a self-help website with information at http://www.courtinfo.ca.gov/selfhelp/

     

    2) Many courthouses have Family Law Information Centers where you can get free information about procedures and perhaps referrals. If you post where in Southern California you live, I may be able to tell you if your local courthouse has one.

     

    3) Los Angeles Superior Court also has a Family Law Facilitator's office. Here is information: http://www.lasuperiorcourt.org/familylaw/sup-facilitator.htm -- you can also check out www.lasuperiorcourt.org/familylaw/

     

    4) The Los Angeles County Bar Association gives referrals and may be able to help you. 213-243-1525 (www.lacba.org)

     

    5) The Harriet Buhai Center for Family Law provides legal assistance for family law, domestic violence, and child support issues if you meet certain income limitations. Their info is: http://www.hbcfl.org/programs.htm

     

    If you don't live in LA, you can also check if your county courthouses have the same types of programs. They should.

     

    I hope you are in a better place soon.

     

     

     

     

    I have posted quite a bit in the past. In this post I would like to ask for help. My son Ryan who has had PANDAS since he was 7 years old is doing better overall. He has had two IVIG's. He still has some tics and OCD but they are minimal. Anxiety is present at times but is managed much better. He is on prophylactic Zith. His biggest challenge is social skills due to years of lost development due to this illness. Where I am asking for help is I am wondering if

    anyone can recommend an attorney in the Southern California area. I am going through a very difficult divorce. PANDAS had a lot to do with the disintigration of my 14 year marriage. The money that we have spent trying to diagnose, treat and get services for help with this disease destroyed us emotionally, physically and financially.

     

    My husband took a turn this week and started sending emails threatening to take my car away, he closed of access to our bank account, and cancelled all behaviorial social skills services for both my sons with no notice. I also have a little boy 8 years old with Down syndrome and I am homeschooling both boys.

     

    This is a definate cry for help. I need to find an attorney that will allow me to make payments. My personal email is: judymendoza@me.com, if anyone has any information that could help. Thank you...

  11. I've been using banana and frozen strawberries. If you're okay with dairy, adding kefir or yogurt can help thicken it. Otherwise, I've heard that crushing ice will give it the smoothie consistency.

     

     

    Can you do banana? I would peel and freeze some ripe bananas and toss those in, along with some carob

    powder maybe. That should hide it pretty well and make a nice milk-shake consistency. I find that anything with bananas usually tastes like bananas and not the other ingredients.

  12. Sorry, I goofed. My canned coconut milk has no additives; the fresh from Whole Foods is from So Delicious and does have some additional additives.

     

     

    S

    Thank you so much, pixiesmommy! My kids love coconut milk smoothies, but I didn't do them often because of the bpa thing. They will be so happy!

     

    lfran, where do they keep the fresh? In the dairy case? (I noticed when I was at Whole Foods last Thursday looking in the dairy case that So Delicious has a whole lot of new products in their coconut milk line, but unfortunately, they use a lot of other ingredients that I prefer to avoid)

  13. Within the last couple of weeks, I read about a test that could help the doctor figure out which antibiotic is most likely to help each patient.

     

    I can't find that info again!!! Arrgh.

     

    If I read it here, can someone redirect me to the post? Or, if anyone knows anything about this, can you let me know?

     

    I think it was a blood test...not sure.

     

    Thanks!

  14. And one more thing -- I was reading an odd book about healing Lyme naturally and most of it didn't resonate with me, but they said that coconut milk had a lot of a particular substance (forget the name, sorry) that was very helpful against Lyme. Not sure how much I believe it, but hey -- I can buy it at the grocery store -- so I've been making smoothies and milkshakes with that. But that is just the last two days -- way after we've seen the improvements I posted about. I just thought that maybe the coconut milk can help us get at that last 5% or so.

     

    (I also have a standing appointment to start DS on abx if his symptoms flare again -- I'm definitely planning to go that route when needed).

     

     

    Sure -- although, uncharacteristically for me, I didn't do tons of research first. I just went to the health food store and made a choice.

     

    This is what I chose:

     

    Jarrow Formula decaffinated green tea extract, 500 mg capsules.

    Paradise Essential Turmeric 16:1 concentrated potency, 250 mg capsule

    Source Naturals 1000 mcg methylb12 sublingual

     

    Our doctor said it was okay to give him the adult dosage (he's almost 90 pounds), so I give 1 or 2 of each of them each day (split am and pm).

     

    If you try them, let me know if they help. The first two are supposed to be strong anti inflammatories.

     

     

     

     

    Ifran- I am so glad you are seeing positive results. Could you elaborate more on the three supplements you are giving...brand/dosage? Thank you!

  15. Sure -- although, uncharacteristically for me, I didn't do tons of research first. I just went to the health food store and made a choice.

     

    This is what I chose:

     

    Jarrow Formula decaffinated green tea extract, 500 mg capsules.

    Paradise Essential Turmeric 16:1 concentrated potency, 250 mg capsule

    Source Naturals 1000 mcg methylb12 sublingual

     

    Our doctor said it was okay to give him the adult dosage (he's almost 90 pounds), so I give 1 or 2 of each of them each day (split am and pm).

     

    If you try them, let me know if they help. The first two are supposed to be strong anti inflammatories.

     

     

     

     

    Ifran- I am so glad you are seeing positive results. Could you elaborate more on the three supplements you are giving...brand/dosage? Thank you!

  16. 31 and 39 are both considered to be specific for Lyme, but an IND stands for Indeterminate -- that is, they saw some reaction, but not strong enough to be considered a true positive. However lots of people who have Lyme will only show an IND, so a good LLMD can help you sort this out. Igenex itself says that the lab results are there to support a clinical diagnosis, not to diagnose the disease itself.

     

    Igenex will also run a follow-up test called a 31 kDa Epitope test, which I believe can be used when a 31 is IND. It helps to tell if the 31 IND is really from Lyme or not. You can call them at their 800 number and ask them about it -- they keep the blood for 3 months from the DAY IT WAS DRAWN (not the day you get your results) so that follow-up tests can be ordered on that same blood.

     

    They also run other tests on urine and blood that sometimes they recommend you can do as a follow-up (or that your LLMD may want to do).

     

    For example, my son had an wishy-washy Western blot, but showed up positive on a urine test after a course of antibiotics. But not everyone will - -it's kind of hit or miss, and a miss doesn't rule out Lyme.

     

     

    FIRST PAGE

    31 kFs IND

    41 KDa +

     

     

     

    SECOND PAGE

    39 KDa IND

    41 KDa ++

  17. Sort of. Western Blot is a type of test. Several labs will run a Western Blot on blood, but Igenex is considered to be the best. However, Igenex also runs a lot of other tests besides the Western Blot.

     

    Does that make sense?

     

     

    Are the Western Blot and Ingenex test the same test?

  18. The auditory program was recommended by an OT. I had noticed my son saying "what" an awful lot, and he seemed hypersensitive to some noises, but his hearing tests were normal. We took him in for an auditory processing evaluation, which is different from a hearing test, and they said he had a large discrepancy between his two ears in his ability to process language, which made him a candidate for the program.

     

    The program is very simple. He uses special headphones (about $60) to listen to 30 minutes of music 5 nights a week. There are 10 CDs in the program (you go 1-10) and then you go backwards 10-1. It is all specially chosen classical music, with nature sounds (high pitched bird calls, etc). I would NEVER have believed that something so simple would make such a difference, but I truly think it did.

     

    He hardly every says "what?" anymore -- and he was doing it constantly. He is no longer bothered by specific sounds that trigger tics/compulsions. His teacher says he is enormously more focussed in class and that whereas in the past she needed to go right up to him to get his attention, now she can call across the room and he hears and attends to her (it is an open, projects-based clasroom, with kids working on projects anywhere in the room). He was always a well-motivated child -- I think he just didn't have the tools to properly

    attend to his surroundings, and this has helped.

     

    When I told the OT what the teacher had said, she says she hears that from parents all the time, and that the teachers ask "what new med did you put your child on, that he is so much more focussed?" (I am part of a large HMO and I estimate that they have about a hundred people on this program at any one time, at just the clinic that I go to, based on the size of their lending program. We had to wait two months for our turn to come up to start it).

     

    My HMO offered it for free as a library exchange-type of thing, exchanging each disk for another one week by week. It is also available for sale, but I think you need an OT's referral.

     

    The other thing we have done is put him on a listening program for auditory processing issues for the past two months, and that has also helped enormously. He says that some of his compulsion triggers are particular sounds, so some credit may be due there, as well, for making it easier to process auditory stimuli without it triggering a reaction. (I have been so impressed by how this has helped him that I have been recommending it to several of my friends whose kids seem to have similar auditory issues. The one we are using is called The Listening Program.)

     

     

    lfran -- i'm glad to hear you are seeing such good results. hope it continues. can you elaborate on the auditory program? did a professional recommend it specifically for your son? did you just think it may be something helpful? what were symptoms before/after that you think it addresses?

     

    thanks!

  19. Also wanted to add that in our program, most kids are able to advance to a new belt level every two months or so, so there is a lot of built-in motivation to keep at it -- and there are a LOT of belt levels. It's a good reward system! (Also, a lot of Tae Kwon Do studios have a good behavior program that focusses on behavior at school and home, and is part of the belt system -- it's amazing how more motivated my two became about chores, cooperation, and respect once they realized that it was part of their belt promotion program!)

     

     

    This is not walking, and may be too intense, but have you considered a sport that is not a team sport, so that whatever level he can do is okay? For instance, my two boys are in Tae Kwon Do, which they think is very cool, and in our particular program there is a lot of calisthenics and stretching as well as practicing kicks and punches. However, it is all done against the air, so no contact, and if you don't show up for a class or two, for whatever reason, you're not letting any teammates down, so it's a good sport for people who have ups and downs in their health and energy level.

     

    Ds, is supposed to be getting exercise every day especially in the form of walking. Yesterday, we made it one lap around the mall before he was really winded. Today, we walked to a small stream by our house so our Labrador could get in the water. My son is very motivated by rewards (aren't we all). Can any of you think of places to walk/exercise and what the reward or payoff might be for an 11 year old boy? He doesn't want to walk just because the doctor says he has to!

     

    I am not complaining, last year when we thought it was PANDAS, he went into full meltdown mode over going to the end of the driveway to get the paper. Just want to make it kind of fun and not such a struggle.

     

    Cobbie

  20. I have been waiting to post this for a bit, to make sure it lasts, but I have seen such an amazing improvement in DS9 in the last two weeks that I wanted to post. I have not seen him with this few symptoms in years. His anxiety is way down (still a little, but 10% of what it has been), compulsions are almost nonexistent (may be gone), and his tics are down to a few a day (at their highest they have been 10 a minute. We have seen tic decreases before, though). He is also much more cooperative and focussed.

     

    He was on 3 weeks of azith in December, but Jan and early Feb were very high symptoms. Since then, and when I started to see the improvement, is when I put him on a couple of the supplements that I have read about here and there (including Dr. Burrascano's 2008 paper), and with the okay of his doctor. Currently he is on green tea extracts (supposed to be a very potent anti inflammatory), turmeric extract (the same, and also an antibacterial?), and methyl b12 sublingual. And an okay chewy multi vitamin (no minerals, just basic vitamins).

     

    The other thing we have done is put him on a listening program for auditory processing issues for the past two months, and that has also helped enormously. He says that some of his compulsion triggers are particular sounds, so some credit may be due there, as well, for making it easier to process auditory stimuli without it triggering a reaction. (I have been so impressed by how this has helped him that I have been recommending it to several of my friends whose kids seem to have similar auditory issues. The one we are using is called The Listening Program.)

     

    I hope I'm not jinxing anything by posting, but I have been amazed and wanted to share this. If anyone knows anything bad about these supplements, please let me know. Otherwise, I encourage others to try them. It has been a long 3 years for DS9, and this is the most optimistic I have ever been. He definitely has lyme -- tested positive on the urine antigen capture test (DOT BLOT).

  21. You are strong and amazing and I think about you every day. Hang in there. There is an old saying -- the darkest hour is just before dawn. Your dawn is coming soon.

     

     

    & this SUCKS. Trying my damnedest to keep my head up though. Today, day 8, has been the most difficult yet. The headaches, that I haven't had in MONTHS, are back. My muscles ache so bad I can hardly use my left arm. I am more exhausted than ever. But I just keep reminding myself that worse is actually better. I have another seven days of increasing the Samento & Noni, so I think it should get a little better after that... Let's hope so, at least. The most notable little moment of clarity was when on day 4 I sat to play the piano & played a song that I haven't been able to in 3 years. :) Made me so happy. So far there have been no huge, dramatic changes to report, but there are definitely smaller ones that still put a smile on my face. I stayed up until 1AM. Sounds like such a lame thing for a sixteen year old to be proud of, but oh well. Wish I had more to relay, but all I've really been doing this past week is getting to know that monster called a Herxheimer, which sucks, sucks, & oh yeah... SUCKS. Ugh. Hopefully I'll be able to post something awesome soon. :) For now, that's about it.

  22. This is not walking, and may be too intense, but have you considered a sport that is not a team sport, so that whatever level he can do is okay? For instance, my two boys are in Tae Kwon Do, which they think is very cool, and in our particular program there is a lot of calisthenics and stretching as well as practicing kicks and punches. However, it is all done against the air, so no contact, and if you don't show up for a class or two, for whatever reason, you're not letting any teammates down, so it's a good sport for people who have ups and downs in their health and energy level.

     

    Ds, is supposed to be getting exercise every day especially in the form of walking. Yesterday, we made it one lap around the mall before he was really winded. Today, we walked to a small stream by our house so our Labrador could get in the water. My son is very motivated by rewards (aren't we all). Can any of you think of places to walk/exercise and what the reward or payoff might be for an 11 year old boy? He doesn't want to walk just because the doctor says he has to!

     

    I am not complaining, last year when we thought it was PANDAS, he went into full meltdown mode over going to the end of the driveway to get the paper. Just want to make it kind of fun and not such a struggle.

     

    Cobbie

×
×
  • Create New...