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Everything posted by Bill

  1. We just found the same for our son - homozygous C677T mutation.... No expert here so take everything I say with a salt shaker of salt. My degree in genetics is from the University of Google this past week. We've been trying to heal my son for the past 12 years so I would NOT follow anything I say too closely unless to do the opposite perhaps. BTW - undiagnosed for 5 years, then PANDAS, then Lyme, now still fighting bartonella and babesia. Raging, dilated pupils, dystonia (like) symptoms, severe OCD, tics, depression, complete loss of math skills, things I've forgotten....Most symptoms are gone except the movement disorders. The depression and math skill loss just recently came back which caused us to do this testing...... Some observations. Our son has been very responsive to SSRIs in the past. He responded positively to 12.5mg of Zoloft the very first time he took it - within 2 hours. No doctor believed us. With our newfound knowledge of this mutation, the RN who requested the test theorized he reacted so quickly and dramatically because he was so deficient of serotonin, I've read a lot of conflicting information regarding this mutation. You'll get a lot of different advice here as well. I (we) are not of the go slow mantra. It helps that my son doesn't really "react" to stuff. So - the RN put him on 15mg of Deplin. I added 8,000mcg of methylcobalamine. He started both as soon as we got them. Of everything I read, you do want to treat with the methyl versions of both (Methylfolate, methylcobalamine). My son's testing also showed that only two antidepressants were good for him. He was put on Pristiq this time based on the test. So - he started the 15mg of Deplin last Saturday. He started the 8,000mcg of methylcobalamine last Thursday. He started the Pristiq on Saturday. There was no reason for when he started beyond that was when we got the different supplements and prescription. As of last night, he was no better, no worse. But he also had IVIG ending last Tuesday so talk about slamming him with stuff - and then we took him back to college yesterday. And if I understand how this works, the homozygous mutation means that my wife and I both carry at least one copy of the mutation. (someone correct me if I'm wrong) So - what's good for the gosling - well, you know. So I started taking 15mg of L-5-Methylfolate (calcium salt) and the 8,000mcg of methylcobalamin Thursday/Friday. No ill effect. I can feel a "buzz" or at least think I can. The methyl folate that I am taking appears to be the same as Deplin but is OTC and costs a lot less (MethylPro). I started taking these as I exhibit several of the possible symptoms. My daughter also exhibits some of the symptoms so just sent her some of each but at much lower doses (1,000mcg for each). And Saturday - I ordered the 23andme Ancestry and Health&Wellness test. We should get those soon. One we get those results (~2 months), and I do more degree training through the UoG, depending on my level of understanding and the results, yes - I'll probably have to find someone who actually understands it all.
  2. SFMom's response covered much of anything I could say so just adding "what we did." Short background story is that our son likely had lyme/bartonella/PANDAS for 9 years before being diagnosed. No idea which came first or when. We were fortunate (haha) in that SSRIs kept his raging under control during much of the time he went undiagnosed/misdiagnosed. He also developed severe OCD, dystonia affecting most of his body, and yes - his pupils were dilated for some 5 years prior to proper diagnosis! (Other symptoms but you get the idea.) So - we waited 9 months after starting antibiotic treatment before his first IVIG on the theory it was better to get his bacterial load under control. At the end of this month - he is going for his 8th (or possibly 9th). We saw improvements early on. I'm not really seeing the improvements now but my wife believes she still does. In any case - he continues to slowly improve. He is 2 years and 9 months into treatment. The whole reason we agreed to IVIG was on the hope that it would shorten his recovery. No clue if we made the right decision or not. He might recover just as fast without the IVIG. He might not. So - we waited. We have no regrets. We are all doing the best we can so there really is no right or wrong answer. Best of luck, bill
  3. Burrascono in ADVANCED TOPICS IN LYME DISEASE DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES Fifteenth Edition; Copyright September, 2005; JOSEPH J. BURRASCANO JR., M.D. "The best source is magnesium L-lactate dehydrate (“Mag-tab SR”, sold by Niche Pharmaceuticals..." We have used it with my son for a couple of years now. It is the only supplement that he has asked for and the only one that appears to do anything for him.
  4. MRI showed 3 small lesions on my son's brain. Was done several years ago - I do not remember where the lesions were. He has since been diagnosed with Lyme in addition to PANDAS. Primary symptoms were dilated pupils, dystonia, raging, OCD, loss of math skills, tics, others...
  5. My son's Cam Kinase score was 126. High but not too high; not nearly as high as Dr. L. was expecting based on symptoms (initially thought to be "just" Pandas). After receiving the lyme diagnosis, I e-mailed Dr. C. with the update. She replied "His CaM score is so low that I suspect that the disease manifestations were primarily due to the infection alone and not as much to autoimmune responses..." Professional courtesy caveats - her reply was simply a professional opinion at the time and not (nor was it meant to be) a diagnosis of any type. That was two years ago so I do not know how the last two years of research might change her response.
  6. I've not posted much in a long time. Every now and then though I stumble across something that reminds me of the struggles. One of my son's earliest symptoms were non-responsive dilated pupils. Doctor after doctor stated that it was the result of the medicine he was on. Well yes doctor that is a side effect however his pupils were dilated before he ever started medicine - that's what sent him for a quick MRI initially to rule out tumor......blank stares. So years later I read that there are really only a few causes of pupil dilation: medicines, tumors, brain inflammation that impacts the optic nerves or inflammation of the optic nerve. There are probably more but.... Have been reading articles recently about the link between bartonella and inflammation of the optic nerves, much of it beyond my understanding but get enough to have that aha moment. Yes - my son was diagnosed with bartonella in addition to the lyme bacteria. His pupils were dilated from age 7 to 12+. And then we found an LLMD who properly diagnosed him. To be more positive - 2 1/2 years into treatment: eyes look great, no raging/behavioral issues, residual OCD, dystonia remains number one symptom. Waiting for blood culture test for lyme. Continues with ABX as his dystonia got worse when he went off for the month prior to getting the culture test. Will get his 8th IVIG in April. Standard caveats. I am not a doctor nor pretend to be. Just putting my observations out there in case it helps someone else. Every person is different. bill
  7. Took the dog for a walk. Let her get into some of the higher grass because after all - we've had sleet/snow/ice just the other day. Today only got to 45.....The winter has been much colder for longer spells than my wife and I remember recently. Apparently not cold enough long enough. Found a deer tick on her chest 10 minutes after coming inside. Have already put some tick stuff on her and checked myself. I live in Northern VA.
  8. Link to article at Science Daily --> http://www.sciencedaily.com/releases/2012/10/121025174140.htm Summary: "ScienceDaily (Oct. 25, 2012) — Investigators at The University of Texas Health Science Center at Houston (UTHealth) have accelerated the search for the bacterial genes that make the Lyme disease bacterium so invasive and persistent. The discovery could advance the diagnosis and treatment of this disease, which affects an estimated 30,000 Americans each year."
  9. Apologize for the delay. As things continue to improve, I am here less often! During the first year, we were treating Pandas (strep), Lyme, and bartonella. The combination was somewhat of a compromise. We (wife and I) noticed that son was responding positively to azithromycin and augmentin combination. Our doctor really favors minocycline as she feels it passes blood/brain barrier better than other ABX. The tindamax (now flagyl) is complete coverage for the forms of lyme. Our doctor would have stuck with azithromycin and the mino but respected our observations regarding the azithromycin and augmentin. Admittedly - that was a strong combination of ABX but he handled it well for a year. Just want to mention that we started with suspected Pandas but never had a positive for strep per say; he did have high ASO, DNase counts that we all follow. Our doctor never confirmed strep or not as the combination above should also deal with it. Can't put my hand on them now, but last test results for these tests were normal - first time in over two years. bill
  10. My son stayed on this combination for a year or so: Minocycline 50mg X 1 daily Azithromycin 250mg X 2 daily Augmentin ER 1,000 X 2 daily Tindamax 1 tablet Fri pm, Sat am + pm, Sun am only We dropped the augmentin when his bowels became loose more frequently. We have also since switched from tindamax to flagyl. Just completing year 2. We also recently drop the Azithromycin down to once a day. At this point our doctor has recommended slowly reducing/dropping items keeping an eye out for any return of symptoms. His OCD is 90% better. The only troublesome symptom remaining is dystonia/movement.
  11. Well I drop dead agree with treating a bullseye. That is a classic symptom as far as I am concerned. My wife some 6 years ago had classic Lyme symptoms in the summer without a bullseye. She had a fever with severe joint pain and headaches within days of removing a tick. Doxy knocked it right out so it must have been Lyme. I am saying that unless someone has symptoms from the tick bite then you do not treat it. I say that with the irony that I had a large expanding rash and treated it moderately aggressively with 200 mg Doxy twice a day for 3 weeks. I still got bart. Now whether Lyme was present (the expanding rash???) I do not know. So I treated what I considered a classic Lyme symptom that being an expanding rash that started 2 days after tick removal. It was a week or two after starting antibiotics that the profound fatigue set in. But I still stand by the statement that without rash or other symptoms then you do not treat every tick bite. Overuse of antibiotics is big problem in our culture. I have a neighbor who I swear had classic Lyme for the past couple of years. I was begging her to see my LLMD. She would hang on my car window complaining of fatigue and joint pain and brain fog. I was going nuts trying to get her to move on it. Then one fateful day about 6 weeks ago pow she has a large rash from a tick bite. Good news is her regular doc said forget the test and jump on the doxy. Well low and behold the doxy for this latest bullseye completely knocked out all her previous symptoms. How lucky can one person be. Kill two birds (Lyme) with one stone. I swear this is a true story. Red I understand what you are saying but it is not clear to me that children or even adults will always show symptoms of any type after a bite from an infected tick. I wish we could have given my son a couple of weeks of ABX and all would have been right with the world. But children are different. We are coming up on two years to fix my son. I don't know that he has infection anymore but the neurological impacts have a long way to go to heal. And thanks to Dut for posting the information on the use of ABX with farm animals. I immediately had the same thought.
  12. My son was minocycline, augmentin, azithromycin and tindamax on the weekends for a good year. He had to drop the augmentin as we were falling behind trying to keep his bowels in good shape. He remains on the minocyclin and azithromycin but we have switched to flagyl on the weekends. Coming up on two years since the beginning of treatment for lyme and bartonella. No positive tests in a long time. At this point, doctor is keeping him on the ABX while son continues IVIG. Mino is like Doxy, correct? Bill is the IVIG for Lyme or PANDAS? If Lyme, how man has your son had and have you seen results? I do not know if mino is like doxy other than they are both ABX. My doctor prefers mino as she feels it pass the blood/brain barrier better than other ABX. Also, doctors are usually hesitant to give doxy to younger children (my son is now 14). I asked her again about doxy last visit and she indicated that there is nothing magical about doxy in the treatment of lyme. She also likes this combination (azith/mino) as it will treat lyme/bartonella and pandas. Doxy also has some nasty side effects especially with sun sensitivity. Not a good solution for a child. My son was diagnosed with both Pandas and Lyme and eventually with CVIDs - common variable immune deficiency. I think it's probably more accurate to say that the IVIG was prescribed for the ongoing neurological conditions. Primary symptoms in rough order they showed up - rage, dilated pupils, physical/dystonia, loss of math skills, and OCD over the course of say 6 years. The dystonia/loss of motor skills has been a huge symptom with my son. My son just completed his 6th IVIG. We have seen various levels of response to IVIG, all of them either distinctly positive or somewhat positive. My son does not slide back like many do. At worst, his hands tremble for a couple of days and this past time his left foot/ankle became very tight/jumpy but I do not really consider those sliding backwards. Prior to treatment his left foot/leg in particular were very tight to the point I could not move the foot/ankle using two hands and a lot of force! He even had botox at one point to relieve the tightness. Several months on ABX loosened the foot/ankle, IVIG has helped. I think we saw the greatest gains on the first and second IVIGs. After the first one his mood/behavior improved tenfold. It was already great - in comparison - after being on ABX for many months but the IVIG really jumped it forward. After the second IVIG we saw a great improvement in his schoolwork. He can do math again! He's not likely to major in math just yet but he gets it again. (His dilated pupils returned to normal after 4 months of ABX.) Since then the gains are more subtle. He continues to make progress though slowly. OCD is still hanging on. I think though that he needs to make more of an effort to get over the last of the OCD. We are really rewarded when someone we haven't seen in a long time sees him and can't get over how good he looks now. Per the doctor , he (now) feels that my son is ahead of schedule and will likely need a dozen or so IVIGs total. It is interesting that the doctors are changing their opinion with time. I can tell you that when we first started IVIG last year, he (Dr. did not seem to have as much experience with the lyme patients, especially with the likes of my son with a primary symptom of dystonia. The doctors are all still in learning mode. I also want to point out that we chose to wait 10 months after starting Lyme treatment for the first IVIG. It makes sense to me to get the infections under control before one tries to correct the immune system. We knew the ABX were working because of the lessening of symptoms. At 10 months, it seemed like progress had halted so we began the IVIG. Perhaps IVIG will shorten his recovery time.
  13. You have the ticks - there are places to send them to be tested. I've not done that so don't have any advice but the Internet is your friend. Even the great state of Texas which I understand denies the existence of Lyme bacteria there, can't argue if you know you brought them back from the Lyme infested east coast. I'm not sure what the right answer is but when my daughter was bitten, our doctor put her on a dose of minocycline and azithromycin immediately (3 days per week) plus flagyl on the weekend for about 8 weeks.. Daughter did have a circular bruise greater than 5cm around a red bite mark. Her tests later came back CDC positive. It's a personal decision but personally I wouldn't wait for symptoms. Knowing he was bitten is good though in that at least if he shows mild symptoms of any type you'll have the upper hand. Many of us have children who never had symptoms that we remember until everything was chronic (my son falling into this category). This site is your friend for travel: http://bedbugregistry.com/ I have no financial or personal interest with the site - I do use it every time I travel.
  14. My son was minocycline, augmentin, azithromycin and tindamax on the weekends for a good year. He had to drop the augmentin as we were falling behind trying to keep his bowels in good shape. He remains on the minocyclin and azithromycin but we have switched to flagyl on the weekends. Coming up on two years since the beginning of treatment for lyme and bartonella. No positive tests in a long time. At this point, doctor is keeping him on the ABX while son continues IVIG.
  15. Concur with everyone else and would agree that you made the right choice (or as I'm fond of saying, any choice you make regarding your child and this illness is the right one!). The one question I would have for Dr. B. is how was he continuing to justify the IVIG? Was he diagnosed as CVID? Was he periodically retesting antibody levels? Our son was diagnosed CVID and IVIG was approved based on that. We have seen some improvement after each one (I think 5 now) though some more than others. For us, Dr. B. said that treatment continues until no further progress is made. I take that to mean 1-2 past seeing no reaction...not 8! Just wondering if he is continuing treatment based on another underlying condition vice PANDAS diagnosis alone. Best of luck, bill
  16. I've not heard of that exact description but I would say yes. My son did not have racing thoughts - or if he did he was unable to express that, but he went through a long period where watching TV was about all he was good for. Regarding treatment for Lyme, my son was (eventually) diagnosed with PANDAS, Lyme, bartonella. He has been on multiple ABX with primary ones being augmentin, minocycline, and azithromycin. He was on all three for about a year but then started having problems with bowels. At that point we dropped the augmentin. Started serious treatment at 12, now 14. As to the aggression when given medications, I wonder if your daughter is one who has methylation issues? You'll find multiple conversations in this forum on that. I suspect that when kids/adults have issues with a lot of different medicines it is not a result of any die off but rather issues processing the medicines. (But since I'm not a doctor my opinion is worth the cost you pay to read this ; ) My son does not seem to have any issue with ABX and only rare/isolated reactions that only might have been related to something I was giving him. As such, I've not explored the methylation issues but might be worth looking into. Good luck! bill
  17. My son tested positive for Lyme (by LLMD standards) and for Bartonella (which would strongly support the lyme diagnosis). He also had high ASO/DNASE counts but only scored low high (I think 126) on the Cunningham test. All of the doctors consider him PANDAS plus lyme. He has completed 5 IVIGs; scheduled for 6th later August. From my point of view - PANDAS looks a lot like Lyme looks a lot like PANDAS.......everyone is so different not sure how you know which causes what symptoms. In my son's case - we believe the lyme led to the PANDAS - but who knows. Treating lyme should treat the strep infection based on everything I know as many of the doctors are using combinations of azithromycin, augmentin, minocycline, bactim, etc. (Yes I know there are exceptions to the exceptions......) I have a more complete (though also abbreviated) history in my "About Me" pages if you need to read something to help you sleep tonight. We waited 8 months or so after beginning treatment for lyme before doing the 1st IVIG. Our theory being let's wait until the bacterial load is down; no sense repairing walls while the house is still on fire so to speak. My son has never strongly negatively reacted to any of the treatments. Nothing I would call a herx. As I understand it, the major purpose of the IVIG is to interrupt the running amok immune system response getting between these anti-neural antibodies and the brain receptors and thus reducing inflamation. I get the feeling that the other two reasons - supplement the body's antibodies and to "retrain" the immune system are not as great as factors? Various doctors have all told me that the short amount of time that patients are put on steroids for the IVIG are not a problem with Lyme. One would need to be on steroids for some time before it really caused an issue. The kids stay on ABX the whole time so that also helps. We have seen improvements almost every time we've treated with IVIG though at times - very miniscule. The main factors for us is trying to shorten recovery as much as we can - he's lived this way for 10 years now - childhood screwed - we can at least try to do everything we can to salvage his teenage years. It's possible that he would essentially recover at the same rate without the IVIG. We will never know. I guess the one thought I have for you though is why is he not under better control with the ABX already being given? Something is not being treated properly if he is still flaring. IVIG will not help with that based on my understanding. My opinion which is not worth much is that IVIG may not lead to an improvement or steady progress forward if something is still not under control. My son was more or less stable - had shown improvements but became stagnant - before we started IVIG. On the other hand - your son could be one (IVIG) and done. As you noted, everybody's experience is different. Count this as post 51 and probably not helping you make up your mind either. (Either decision you make is the right decision.) Best of luck.
  18. Feel your pain. Not sure there is much you can do beyond keeping options open for him. I don't know your specific details but isolation is generally self imposed by the kids. You can't really push them to socialize if they don't want to. (BTW - I know that I am reading a lot into the post so my apologies if I'm way off base. If his isolation is due to the illness - keeping him isolated for medical reasons, please ignore my post.) We took advantage of my son's good days when he would venture out. Trips to Target were a treat for him. Church was difficult but something that is important to him so that was one of our benchmarks for how well he was doing. At his worst, he was unable to attend. Encouraging even small trips may help him. Being outside the house helps to keep him socialized. Picking fun but short activities with a friend - even a fleeting friend in a neutral environment helps. A neighborhood pool with other kids allows them to "socialize" without direct interaction....they are still part of the crowd. Now fortunately - my son is a little bit like me and didn't really miss "friends" too much. Being alone is okay with him in which case his isolation - even now - is not too bad of a thing for him personally. (My wife does not agree with that viewpoint of course.....)
  19. I am afraid I do not have a good recommendation on whether to give the next 5 days of ABX or not. Sounds like you have had good results with ABX several times now. Have you document or recorded your son before/during/after ABX? Even if your doctor has never heard of PANDAS - it should be hard for him to ignore such evidence (though don't be too surprised if they do!). Along with the videos/documentation - hand him a copy of Swedo's original research or a number of later articles on this topic. The top thread - Healpful Threads for PANDAS contains a number of useful links. Sometimes we have to educate the doctor. Sorry that I can not offer more help. bill
  20. We have herds of deer, plenty of rabbits, a groundhog or two, but I've only seen one sign that we have any mice in the area. That could be because we have a couple of very healthy black snakes living in the yard. My wife is not too happy but I asked her if she'd rather have the snakes (which for the most part we do not see) or the mice? More seriously, we've removed a dozen plus ticks from our dog and selves since the season began and we really don't go out much anymore. My pandas/lyme son is still recovering. My 18 yr. old daughter just got lyme diagnosis confirmed. Fortunately - yeah right - she had a bite with a circular bruise around the bite. Never saw a tick of course. I've given up on Mother Earth and now am at full blown war with her. I've laid down poison around the house. Unfortunately, they rejected my proposal to blacktop the rest of the county. But - I understand especially with your young ones that using poison in your yard is not a good option. Use DEET if you are comfortable with it. There are some natural deterrents. I use an oil of geranium rose/almond oil mixture though I haven't decided if it works or not. Most of the ticks we've pulled were not when we were using DEET or the oil. Perhaps playing video games inside really is healthier for our kids? Hmmm, I'm back to snakes being the best option.
  21. Dr. Susan Perlmutter was on Swedo's original team at NIH regarding PANDAS if I've kept my facts straight. She IS very familiar with PANDAS. I do not know if she is accepting new patients - wasn't the last time I knew but that has been a while ago. Her office was in Reston, VA.
  22. Just our experience, Our son reacted positively and immediately (within hours) to Zoloft. He stayed on Zoloft (25mg) for 3 years before all ###### broke through again. You could say that when it stopped working - it was spectacular! It then took us months to discover that low dose Prozac (40mg) worked. It took 2 days before we were sure the Prozac was working. He is an anomaly for his rapid response to these drugs. These only controlled his anger/raging. The OCD started at the same time the Zoloft failed. No prescription of any type helped with the OCD. He is slowly making progress against the OCD while he is getting better overall (Lyme/bartonella/PANDAS). I also think that Dr. T.'s generalization must be considered as just that perhaps - a generalization. bill
  23. Regarding "Has anyone decided to forgo antibiotics and request IvIg instead?" To answer your question directly - you cannot forgo ABX and just treat with IVIG. Your daughter needs the ABX. The IVIG might augment treatment for your daughter but it will not treat the Lyme/bartonella bacteria. (Though do keep in mind I have zippo medical training beyond the school of hard knocks.) Our son was (finally) diagnosed with Lyme/bartonella as well. We believe he also had PANDAS meaning the strep bacteria was in play. Not sure which came first. We are doing IVIG in addition to the same ABX your daughter was prescribed - but - we did not start IVIG until 10 months after starting the ABX. Our reasoning is that one needs to fight the infections first. With the infections under control, we are hoping the IVIG will speed up the healing process. We have seen improvement every time he's had IVIG so perhaps we made the right decision. Perhaps we would have seen improvement no matter when we started though. To give you perspective, my son began serious treatment for Lyme in October 2010. He had his first IVIG summer 2011. Next week, he will receive his 5th IVIG. I should also mention that another reason IVIG was recommended for my son is that one of his primary symptoms was (is) dystonia or simply a lot of neuro-muscular issues. All slooooowly getting better. My son never went through a sleeping phase like your daughter. He is 14 and likes to sleep 12+ on the weekends if we let him though. I would take the sleeping as a positive sign in that her body is now actively fighting the infection. Best wishes, bill
  24. The doctors seem to have their own preferences and I know through these boards that doctors do not treat their own patients the same way each time. I'm sure they tailor treatment for your child and will further tailor on subsequent treatments as needed. My son's last IVIG though.... Solu Medrol in the IV on day 1 (form of prednisone) Benadryl and ibuprofen about 1 hour before starting the procedure and every 6 hours during the next two days of the procedure. If needed, that can continue through the night but my son did not wake up with headaches so I let him sleep. Saline drip to keep them hydrated along with fluids throughout the day. My son would not drink much the first time through but after vomiting like crazy for about 12 hours starting at the end of day two he's done a much better job since. We can use Tylenol in addition to ibuprofen but we've not needed to. Starting the day after the procedure, prednisone and continue the benadryl and ibuprofen for 3 days. I'll be honest though, I tend to stop all of it as soon as any hints of a headache are gone. This last time, that meant I stopped the day after the procedure. Here's another heads up - with the saline IV, plus the IVIG, plus drinking, be prepared to visit the bathroom fairly often. My son's OCD means I'm still providing some help there. My son is coming up on IVIG #5 later this month. His first time was the worse. He did not (refused) to hydrate properly and they did not give him the solu medrol the first time. Since then, he's had minor headaches that were easily treated by the ibuprofen Books are good. Movie players for the kids are even better. Dr. B.'s office has DVDs with a good selection of movies for younger children (<10yo). We bring our own plus headphones. You'll also want food for the day. Good luck and as always - YMMV bill
  25. I gave Vitamin K2 (2 X90mcg; Jarrow MK-7 from Natto extract) to my son for 4 months. Did not notice a difference so let it run out. bill
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