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Bill

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  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
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