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JenniferG

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  1. Like
    JenniferG got a reaction from tj21 in LD vs HD IVIG   
    Unfortunately, my provider will only prescribe to the a certain infusion company. (He owns it). Not my preferred scenario, but kids are healing. 
  2. Like
    JenniferG reacted to sf_mom in PANS/CVID   
    Our son has CVID and Lyme et al.  
    He has been treated since the age of 6 and is now 13 years old.  All notable PANS/Lyme symptoms were in remission. He has been getting IVIG for almost 3 years. He still had some fatigue and we were unsure if it was from active EBV (probably exposure from IVIG) or lingering Lyme.  All his subclasses normalized with only his subclass 3s being only slightly positive.  He was recently denied IVIG coverage due to guidelines changing at age 13. He was off IVIG for 10 weeks and as a result went deficient in his 1s, 3s and almost deficient in total serum.  His immune function dropped in half.  Thankfully, he got approved for another year.  His LLMD believes it might be a lifetime condition for him but minimally will need another 3 years of IVIG.  We are bummed his immune system could not sustain without IVIG but still hold out hope there is total recovery.
    I just wanted to add recovery is a very slow process.  However, our son has lived a very normal life and free on PANS symptoms for a very long time.  Most recently, he broke out in a Bartonella rash on his back and hips after many years of treatment and no obvious symptoms. 
    Game changers for our son was discovering the chronic infections and viruses.... he had many.  Treating aggressively for those infections and viruses.  Low dose IVIG for CVID and IV Ozone.  
    Hope our story helps.
  3. Like
    JenniferG reacted to h_lee4 in Low IGG and SubClass 1   
    I think it ultimately depends on the doctor.  But I believe that one could be diagnosed for being just below normal.  I do not know if PANS can screw with the numbers but I do know that the numbers are changing and fluctuating daily.  Are you hoping for a diagnosis?  If you believe a deficiency may be an issue I think the doctor would be open to addressing that due to the on going infections alone.  You don't want to make a problem if there isn't one, but I can tell you low igg surely would not be helping with the infections and treatment would hopefully help!  The normal range is still a range and just because one is within range doesn't mean that they are equal to someone who is also in range with a much higher value.  Both are normal but they aren't equal and the low one might not be sufficient.  I've always looked at it like every little igg counts.  This is a reason that some people don't like IVIG and prefer other methods such as Sub Q, IVIG loads you with a big amount of igg but as the month goes on the level falls and right before the next infusion you find yourself on the low end of the range.  You stay in range, but there is a noticeable fluctuation.  Whereas Sub Q for example is weekly so you are able to maintain that level at a steady, stable, median level within the range.
    Igg levels are always fluctuating so if someone happened to be just below the normal range one day this wouldn't necessarily be a cause for concern.  However, if someone tends to live at that low level outside of the range then treatment might be key to help that person maintain enough igg to live a healthier, more infection-free life.  Doctor's also definitely take the patient's ability to fight/prevent getting infection into account.. for me the diagnosis came from a combo of low levels of igg and my chronic sinus infections that I could never seem to fight off.  It sounds like the on going ear and sinus infections would be a big factor in a potentially getting this diagnosis.  I was also low in SubClass 1, not crazy low, just under the range I believe, but I was pretty low on the IGG total.
    At the end of the day there are people that naturally sit on the low end of the scale and do not receive treatment, it just depends if your comfortable living at that low end.  I think its a question for an immunologist since its always good to be on the safe side.  I think they would have very valuable input.  My immunologist has always felt very strongly that I need treatment and so it never fell on me to decide wether or not I feel I really need it, I don't like to make those decisions anyway!
    I also want to note that I have seen different normal ranges on different tests that different doctors have used so keep this is mind.
  4. Like
    JenniferG reacted to Gpookie in CVID and PANS   
    My kids have hypogammaglobulinemia.Long-term abx and LD IVIG.
  5. Like
    JenniferG got a reaction from tj21 in LD vs HD IVIG   
    In a way, it's relieving to know why they are always sick.  But, now, to make the decision as to which IVIG route to take is making us crazy.
     
  6. Like
    JenniferG reacted to Gpookie in LD vs HD IVIG   
    We did HD on both boys in 20014.  The worst PANDAS symptoms dissappeared over night and never came back.  After 6 or so months, they kept getting sick with mild flaring and also flaring on exposure.
    ID specialist and immunologist discovered hypogammaglobulinemia, possible CVID.  LD monthly (.5g/kg for 6 months, stop 3 then 6 more months)  worked wonders.  No more flares, even when ill and on exposure.  LD was the best thing.
  7. Like
    JenniferG reacted to Gpookie in LD vs HD IVIG   
    We did 2 rounds.  Yes, less suck and when they do get sick, they just get normalkidsick....
  8. Like
    JenniferG reacted to Gpookie in LD vs HD IVIG   
    We don't know.  We just stopped again for the summer. We will check levels in August to see if levels held. They held in the normal rangenlast summer, but had fallen within the normal range.
     
    My kids have hypogammaglobulinemia, possible CVID, not confirmed CVID.
  9. Like
    JenniferG reacted to tj21 in LD vs HD IVIG   
    Going to our immunologist in July (appt. pushed back 2 times, ugh!) to find this out. DS17 has had two HD only (1.75g and 2g); improvement for ~6 mos., after that doesn't last. IgG levels continue to drop, and flares continue. Hypogamm. dx but don't know why his numbers drop, yet.

    Glad to hear LD has helped for some; my fingers and toes are crossed for some relief here. About to do 2nd steroid burst.
     
  10. Like
    JenniferG reacted to Mayzoo in Methyl Donors   
    Try these links: (more found here: google "list of methyl donors")
     
    https://www.facebook.com/mthfralliance1/posts/530147490434986
     
    https://autoimmunethyroid.wordpress.com/2006/04/16/list-of-methyl-donors/
     
    http://www.rainbow.coop/library/methyl-donors/
  11. Like
    JenniferG reacted to Mayzoo in Methyl Donors   
    Also try typing into google each med + "methyl donor" such as:
     
    Olive leaf: https://www.google.com/search?newwindow=1&q=olive+leaf+%2B+methyl+donor&oq=olive+leaf+%2B+methyl+donor&gs_l=serp.3...14015.22579.0.23002.20.20.0.0.0.0.194.2019.9j9.18.0.msedr...0...1c.1.62.serp..16.4.364.JmKC6OHCj08
     
    NAC: https://www.google.com/search?newwindow=1&q=NAC+%2B+methyl+donor&oq=NAC+%2B+methyl+donor&gs_l=serp.3..0i7i5i30.72675.76979.0.78254.13.13.0.0.0.0.88.929.12.12.0.msedr...0...1c.1.62.serp..6.7.546.NNtGvzpM2XU
  12. Like
    JenniferG got a reaction from T_Anna in CamKinase II...Heart   
    Has anyone looked at or linked CamKinase I with heart issues? There is a connection, I just can't comprehend the explanation.
  13. Like
    JenniferG reacted to airial95 in IVIG - really worth it?   
    jenniferg - my son was diagnosed in 2010 at 2 years old, his onset was about 6 months prior to that. For 3 years we did abx (along with T&A), our issue was recurring strep. We would see steady improvement on the abx, and then he would get strep again (even on the abx.) The T&A brought him back to 100% immediately, but 6 weeks later he was + for strep again, so we were back to the beginning. We finally pulled the trigger on IVIG in Spring 2013. He got 5 from April 2013 through Christmas 2013 and the results were immediate, and astounding. He was 100% within 24 hours of the infusion. The results lasted, and we would start to see some minor symptoms "creep" at about the 7 week post infusion mark, but he was on an 8 week schedule, we were actually okay seeing minor creep because it assured us we still needed the IVIG. We had a bad nurse with our last infusion and decided to take a break.
     
    Even though its been a year since his last infusion - the results are still tremendous. He went from getting strep 6 - 8 times per year post T&A (all while on long term, multiple, full strength abx), to having just 3 positive strep tests since Spring 2013. His flares with each new infection have been much milder and manageable. He does still react to exposure to strep, but only about 3-4 days of symptoms and back to normal.
     
    We waited 3 years to pull the trigger on IVIG because of his age, we were afraid of such an intensive treatment and really wanted to start low and slow with anything we tried. I'm sorry that we waited that long!
     
    He had strep again in July, and his vocal tics returned, they are the only long term symptom we are still seeing and our new immunologist is working to help us get another infusion covered to eliminate that symptom.
     
    Hope this info helps.
  14. Like
    JenniferG reacted to emst in Biome Restoration...Helminths   
    Just jumping on - jenniferg, so happy to see your recounted experience. Ours is very similar though our kids are older and started at 30, ds is at 60 though his older sister is staying at 30 so far they had a huge run of improvement to date. Just did bloodwork on Monday. Will see if any numbers have improved. QUESTION DS has a virus and wicked (pandas) post viral OCD which does not seem as bad as its been in the past but its still an issue. Thoughts/experiences? Thanks!
  15. Like
    JenniferG got a reaction from emst in Biome Restoration...Helminths   
    It is a parasite that used to live in us before we "cleaned up". It doesn't attach and grow and live in you. It lasts 2-3 weeks.....which is why you need to dose that often. I don't believe it is something you end/stop. From what I was told, it's a life long thing. TSO (pig whipworm) is VERY expensive. For a bit, I didn't understand why everyone was saying it was so expensive and I was paying $100 for 4 doses (with shipping from England). It is because we are doing HDC (larvae of a rodent tapeworm found in beetles). I know, I gag everytime I read it or say it. It is a clear liquid. You see NOTHING. It needs to be taken with a fat. So, I give it in a small amount of Chocolate Almond Milk. Honestly, you get to the point where you have tried EVERYTHING. and it's working. It's doing exactly what she said it would do.....if it continues I plan on making a big stink about how well my kids are doing and how everyone should try it. Especially, if you have gut issues.
  16. Like
    JenniferG got a reaction from jtp in Biome Restoration...Helminths   
    It is a parasite that used to live in us before we "cleaned up". It doesn't attach and grow and live in you. It lasts 2-3 weeks.....which is why you need to dose that often. I don't believe it is something you end/stop. From what I was told, it's a life long thing. TSO (pig whipworm) is VERY expensive. For a bit, I didn't understand why everyone was saying it was so expensive and I was paying $100 for 4 doses (with shipping from England). It is because we are doing HDC (larvae of a rodent tapeworm found in beetles). I know, I gag everytime I read it or say it. It is a clear liquid. You see NOTHING. It needs to be taken with a fat. So, I give it in a small amount of Chocolate Almond Milk. Honestly, you get to the point where you have tried EVERYTHING. and it's working. It's doing exactly what she said it would do.....if it continues I plan on making a big stink about how well my kids are doing and how everyone should try it. Especially, if you have gut issues.
  17. Like
    JenniferG got a reaction from SSS in Biome Restoration...Helminths   
    It is a parasite that used to live in us before we "cleaned up". It doesn't attach and grow and live in you. It lasts 2-3 weeks.....which is why you need to dose that often. I don't believe it is something you end/stop. From what I was told, it's a life long thing. TSO (pig whipworm) is VERY expensive. For a bit, I didn't understand why everyone was saying it was so expensive and I was paying $100 for 4 doses (with shipping from England). It is because we are doing HDC (larvae of a rodent tapeworm found in beetles). I know, I gag everytime I read it or say it. It is a clear liquid. You see NOTHING. It needs to be taken with a fat. So, I give it in a small amount of Chocolate Almond Milk. Honestly, you get to the point where you have tried EVERYTHING. and it's working. It's doing exactly what she said it would do.....if it continues I plan on making a big stink about how well my kids are doing and how everyone should try it. Especially, if you have gut issues.
  18. Like
    JenniferG got a reaction from jtp in Biome Restoration...Helminths   
    Ordered today!! I will keep you posted.
  19. Like
    JenniferG reacted to jtp in Biome Restoration...Helminths   
    jenniferg,
     
    Yes I have heard of this, and as a matter of fact, DS's Integrative Physician has suggested we check into this. She said most people can't get over the ick factor, but has seen some positive benefits...I was one of those parents that can't get over the ick factor and decided not to try it.
     
    If you do try this, please let me know.
  20. Like
    JenniferG reacted to nicklemama in Cunningham Panel Results   
    I'm not sure why the interpretation was left off unless it will come with the D2. Based on the results you posted, you are going to get a likely interpretation based on the high D2 and CamK.
  21. Like
    JenniferG reacted to fightingmom in Magnesium Deficiency   
    Oh, you are not alone. I'm still working on converting my husband and son, though my husband has been much more receptive (I've even converted him onto the concept of healthier food for our pets but that is an entirely different convo. Lol) -- my son still complains everytime we drive past a McDonald's or Wendy's because "he is the only one of his friends that never eats fast food". Last month, I gave in and got him a cheese burger and fries (which I gladly would have made him at home, but mine are not as good I guess) but I cringed inside as he ate it. Ten years ago I wouldn't have been bothered but I have been slowly gathering more knowledge over the years and seeing subtle changes in my own health from eating healthier. I actually starting on this path when looking for alternative treatments for my dog with cancer many moons ago. Have been slowly teaching myself and reading ever since.
     
    Someday, we will get there....I am aware of my husbands stash of twinkies next to the bed, but hey, he caves to my organic only produce rules and no meats with antibiotics or hormones, etc.-- he even loves my smoothies. So...let the man have his twinkies. Same to be said of the cookies in your house. We learn to choose out battles, lol. Like, just take your damn pills!
  22. Like
    JenniferG reacted to LNN in 23andMe testing   
    Nancy - all I need to do is head over to a few FB pages or talk to a few other moms who've already done this and I quickly realize how much I still have to learn. My poor guinea pig kids
     
    E - after looking at Jennifer's Courtagen report and comparing it to the 23andMe report, the genetic Genie report (which is like Yasko's) and a sample of a Prometheus report (another app that analyzes your results for you - cost = $2) - I have to scratch my head ans ask why Dr T is so in love with Courtagen. Unless your child has clear signs of mitochondrial disease, I don't see the value. 23andMe gave me a file that I imported into Excel and it has 960,000 individual SNPs (with maybe 3-7 SNPs per gene). It includes both regular dna and mitochondiral DNA and clearly has way more info than the average person wants or needs. But it's $99 out of pocket and I get the raw data, so as science progresses, I can re-run my data thru one of these apps 5 years from now and the SNPs they didn't know what to do with now might be informative in the future. Not trying to be an infomercial. I'm sure 23andMe competitors give similar info. And even with this info overload, there's still the big question of what does it mean/what do you do about it? But it seems that that's also true of Courtagen and so far, I haven't heard any of Dr T's patients say that he sits down and goes over this with you in any great detail.
     
    Having compared the reports, I'd go with 23andMe - unless you do not want to know about anything non-pandas. DS's 23andMe report points out that he's at risk for heart disease and macular degeneration and noise-induced hearing loss. Well, I already knew that based on my own father's health issues. But it's still hard to see it in black and white. So if you're not interested in having certain fears confirmed, then I can see sticking with a specialty test like Courtagen. But I think having my son's bigger picture will be helpful. Because DD has MTHFR mutation and we have success with methylation supplements, I've been giving both kids a Thorne multivitamin that has methylfolate in it instead of regular folic acid. Figured, hey - with my family history, the methylfolate won't hurt him, right? Well, this is bad for my son because his above mutations suggest he should steer clear of methyl donating supps like methylfolate. I'll now put him back on his regular mutlivitamin with regular folic acid and cynoB12 and maybe his mood will improve a bit. (I can hope). So for me, having all this raw data is empowering. I will inevitably screw it up along the way. But probably no worse than I would without the info. So if you're the dabbling type, my vote would be for the $99 23andme test over Courtagen, unless there's a specific reason Dr T is doing this that I'm not aware of. JMO
     
    edit - BTW - the Prometheus report you can run off of snpedia for $2 lets you see how you metabolize certain drugs, including ibuprofen, coffee, etc (you get the raw data froma co. like 23andMe then upload the raw date into Prometheus - not complicated)
    sample report: My link
  23. Like
    JenniferG reacted to 3bmom in Never thought Strep was an Issue---it may have been.   
    This is so interesting! At the Northeast conference the sinuses were mentioned as heavy strep areas and last month at the Northwest conference anal strep was brought up. Why do so many Drs consider a throat swab as definitive. We were positive only once which was our onset to PANDAS.
  24. Like
    JenniferG reacted to JuliaFaith in Never thought Strep was an Issue---it may have been.   
    jenniferg--My son was on Azith for 1 month before testing positive for the strep in mouth, hence the mouthwash.
  25. Like
    JenniferG reacted to LNN in I need a Glutamine Education...   
    You can do a search of old posts and find a few discussions. We tried it once for each kid. Didn't see changes one way or the other, but everyone is different. You can also look into butyrate, which is supposed to help thicken the mucus lining of the intestines. We tried it last summer for leaky gut. Didn't see changes but again, it helps some people. The literature made it sound promising (tho it should be avoided by people with CBS mutations).
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