Jump to content
ACN Latitudes Forums

Bill

Members
  • Posts

    204
  • Joined

  • Last visited

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.
×
×
  • Create New...