fightingmom Posted May 3, 2012 Report Posted May 3, 2012 Okay, first I think I misspoke previously when stating my son's IgG serum I could have sworn it was 705 but it's actually 765 -- which is good! My photocopy is rather crappy and I may have misread. Regardless, I am wondering how concerned I should be with these numbers: IgG, Serum: 765 L Range 842-2013 IgG 1: 435 Range 315-855 IgG 2: 144 Range 64-495 IgG 3: 51 Range 23-198 IgG 4: 12 Range 11-157 Now, I know the IgG Serum is definitely low --- how badly will this impact DS's immune system? And, while technically all the subclasses were within range, IgG 4 seems pretty concerning, no? Only 1 point within range... and IgG 2 and 3 are on the lower end of normal. Also, IgA Ab: 77 Range 65-356 Seems sort of on low end of normal IgA1: 57 Range 47-249 Kinda low... IgA2: 14 Range 4-50
norcalmom Posted May 3, 2012 Report Posted May 3, 2012 Similar to my son's - just boarder line low except for one subclass. The immunologists don't consider this low - our docs charts had much larger "normal" ranges than the test result form, and although my son was about 200 points below normal overall IgG - it would have had to have been about 400 below for them to be concerned about it. And I'm pretty sure the treatment is IVIG, but low dose and on-going. You may want to add some iumme support supplements like D3 if you don't do this already. I think it helped my DS get through almost a year without a cold (ironically, has one now as I type this - but first in one year since his second HDIVIG - but I think its mostly the vit D3 that's keeping our entire house more healthy - but we aren't riddled with colds or other respiratory illnesses - it was just that when he got a cold it would set off exacerbation so we measured his D3, saw it low, and I began supplements for whole family (mine low too) about 18 months ago - its easy because they are tasteless drops - and you can just put a drop on cereal in the morn and you would never know its there. Did you have your pneumococcal titers measured ? pandas kids also low in that area - my son only made about 5 titers, and only had one in the normal range - out of 14. This is more alarming to them, and they will often ask you to re-vaccinate and do the blood draw again (heck No!) and if you refuse there are some specialized tests that look at B-cells that can get the same info. Long story short - I think my DS's poor performance on these tests is why he got HD IVIG covered the second time (better immunoloist) and we didn't get insurance to cover the first time (pandas doc). Both were very very helpful to DS.
fightingmom Posted May 3, 2012 Author Report Posted May 3, 2012 (edited) Thank you. His Vit D was 17 -- he is on D3 since we got the labs back a few weeks ago. Yes, streptococcus pneumonia titers were as follows: Serotype 1 ---- <0.3 Serotype 3 ---- 7.8 Serotype 4 ---- <0.3 Serotype 5 ---- 0.7 Serotype 8 ---- 1.4 Serotype 9 ---- 1.2 Serotype 12---- <0.3 Serotype 14---- 0.3 Serotype 19---- 1.2 Serotype 23---- 0.5 Serotype 26---- <0.3 Serotype 51---- 0.9 Serotype 56---- <0.3 Serotype 68---- 1.8 For the range, the lab paperwork says that Levels of 2.0mcg/mL were protective. So, then he only has one in normal range? That can't be right. Does these matter as much in adults? I have <0.3 listed on all but 3 of mine. Edited May 3, 2012 by fightingmom
norcalmom Posted May 4, 2012 Report Posted May 4, 2012 That is correct. He only makes one. It is not that uncommon - and probably means nothing for you - but if your child is getting sick a lot - then it could mean something. Ask your immunologist about other tests, but I would not do the "challenge" where they vaccinate you to see if you will have a response. Has you child ever had pneumonia? Have you had his Mycoplasma titers checked?
kimballot Posted May 4, 2012 Report Posted May 4, 2012 That is correct. He only makes one. It is not that uncommon - and probably means nothing for you - but if your child is getting sick a lot - then it could mean something. Ask your immunologist about other tests, but I would not do the "challenge" where they vaccinate you to see if you will have a response. Has you child ever had pneumonia? Have you had his Mycoplasma titers checked? I agree with NorcalMom. Does your son get sinus infections often? S. Pnuemonaie is one of the prime causes of sinus infections. I don't know if you are looking at IVIG for your child, but if you are - not all insurance companies require the challenge test before IVIG.
fightingmom Posted May 4, 2012 Author Report Posted May 4, 2012 (edited) Ha! Yes!!! Both of us are chronic sinus infection city! Way more then strep throat. Dr. B said before our labs that he thinks we both carry strep in our sinuses. My son had pneumonia many years ago. Back around time of adenoids removed, tubes in ears, etc. My sons mycoplasma was not that high, however, my IgG was >5.0 on range where > 1.10 is positive. I know this seems debatable since igM is supposed it indicate active infection but I have read countless times that IgG showing up high in adults could indicate chronic infection. My husbands labs just came back with him being "very high" with active mycoP. They just started him on zith 5 days ago. They also think the reason my son started doing so well on the zith they put him on 3 weeks ago is likely because of mycoP. However, despite the fact that they treated me for yet another sinus infection at their office (gave me augmentin - didnt work, its back with the pressure and slight nosebleeds too) they don't feel the need to also treat me with zith and I worry this is a mistake. I know my body and how I am always sick and I don't feel that IgG number is insignificant. I also am positive for band 34 Lyme and CD57 came back at 20...I'm fighting something.... I would like to rule out/see LLMD for my son before doing IVIG as I worry about him getting worse from it if he's dealing with untreated Lyme, but I will not vaccinate him again!!! His pedi pushed me into giardiasil 2 yrs ago and it was the nail in the coffin!! Edited May 4, 2012 by fightingmom
philamom Posted May 4, 2012 Report Posted May 4, 2012 My daughter only had two in the normal range and was plagued with chronic sinusitis since 18 months old. She received IVIG coverage with documentation of both.
fightingmom Posted May 4, 2012 Author Report Posted May 4, 2012 My daughter only had two in the normal range and was plagued with chronic sinusitis since 18 months old. She received IVIG coverage with documentation of both. Good to know. We have lived in 4 states, so docs when he was younger are a bit scattered. I have just recently started requesting records from all over. Expecting to get hospital records and ENT records in the mail today or tomorrow documenting sinus infections/allergy tests -showing no allergies/surgery for adenoids and tubes, etc.when he was about 4-5yrs old. Need to get records from pedi around this time, he's no longer at the practice and I need to hunt him down. I have to reach out to the hospital he was born at to get history there. He was hospitalized a week after birth with high fever and infection of unknown origin and from there we spent every other month in the ER for high fever and/or ear infections. Around 2-3 is where the sinuses really came into play. He's had three sinus infections diagnosed by 2 different docs since end of Jan - Early February of this year with xrays. I will keep ordering records so I have my ducks in a row.
Dedee Posted May 4, 2012 Report Posted May 4, 2012 That is close to what my son's labs looked like about 18 months ago. He has horrible allergies / sinus problems. He also was positive for Myco P and has issues with strep. He took antibiotics for about a year and also was on a supplement to boost the immune system. It was some sort of bovine colostrum. After six months his immune panel returned to normal and his myco p titers returned to normal also. He also took a herbal supplement for the myco in addition to his antibiotic. I never could get my daughter to take the myco herbal because it had a strong smell. She is still positive for the myco and on antibiotics. My son still has symptoms even though his titers are normal but we have trouble with strep with him too. He just finished a month long high dose Augmentin run and now only taking OLE until I can get him seen by Dr. M in June. Trying to look on the bright side, the low serum IgG may help you get IVIG if you decide to go that route. Dedee
norcalmom Posted May 4, 2012 Report Posted May 4, 2012 I'm willing to bet that your son has a chronic MycoP infection. Five times the normal range is very high, esspecailly if they didn't have pneumonia recently. I've made alot of posts on this - but your IgM for mycpoP is usually only active at the beginning of infection - if the infection becomes chronic - or systemic - or if they have had it more than once or twice - then the IgM will usually decrease just like it would if you had gotten better. My theory with my son is that when he was 6 he never fully recoved from pneumonia - which was dx'd and treated with regular course of antibiotics - and it became systemic. Do you remember your child ever having a long last dry cough - after a cold, it just hung on for 2-3 weeks longer than the rest of the cold symptoms? This is atypical pneumonia - and most docs are only looking for symptoms of typical pneumonia (if lungs are clear - they think kid is clear). He became full blow pandas at age 9...but in those 3 years he had 2 or 3 weird "phases" he went through - which I probably didn't recognize as pandas. That being said, most people will recover from this type of pneumonia without any treatment, but for some reason my son could did not. His immune system couldn't kick it, due to whatever reason (possibly Lyme..possibly "weak"immune system) and that is what triggered his pandas (he had peri-anal strep just prior to his pandas explosion at age 9 - but never had a strep throat). Azith was not a good treatment for my son. While it seemed good at the beginning of pandas (this before we knew about mycoP) he got better for a little while, and then the Azith didn't seem to be doing anything (except making me fell better - protecting him from strep - as well as probably made his a little better due to anti-inflamatioy properties). Doxycycline and Minocycline (which belong to the macrolide antibiotics class) are the recommended treatment. Azith is sometimes used for mycoP - but I think that more commonly used for the "typical" MycoP (community acquired pneumonia) than the atypical systemic / chronic mycoplasma. google "chronic systemic mycoplasma treatment" for more information. And confirm by having his IgG tested again - to see if it went up, down or stable. It may go down a little with Azith - and then go back up if Azith does not wipe it out (and it may not - which was our case - my son was on it for 2 years full dose and his IgG for mycoP went from 2450 to over 3100 -normal under 300) in a few months - that was our confirmation that he had MycoP and switched to Doxycycline.
fightingmom Posted May 4, 2012 Author Report Posted May 4, 2012 (edited) You are really helping me along! Thank you very, very much! We both have chronic dry cough, though his has subsided a lot in the last few weeks --- which it will do periodically but then amps back up again. Maybe corresponding with sinus infections and lingering longer. I will pay closer attention. I just heard it again last night though. His behavior has been creeping back, he was AWESOME the first 2 - 2 1/2 weeks on the zith and the past few days I am seeing the signs again. He was yelling at me to shut up and pounding up the stairs, door slamming, etc. last night because I was telling him to get his homework done. Hmm, we are going to LLMD on May 11th. I am bringing every lab, including the ones for my husband and maybe he will take us down further exploration of mycoP since it's a common lyme coinfection. I had a phone consult already and doxy came up for me...so we'll see. Did the doxy/mino finally eradicate the mycoP for you guys? My dog has chronic ear infections, bulldog posted an interesting tidbit about streptococcus pneumoniae and dogs...makes me wonder. I think I'm going to push hard for a long round of strong abx for the dog and really try to get to the bottom of this mycoP stuff. Thank you again! I will google the chronic systemic myco! Edited May 4, 2012 by fightingmom
norcalmom Posted May 4, 2012 Report Posted May 4, 2012 Not yet - he'g gotten much better - no more pandas exacerbations - but some mood swings, and one OCD thing that goes up and down (dealing with a weird infection of his gums we don't know what it is - and I think that is why he had a slight downturn fast few weeks). But - he would have been heading for another IVIG had we not found this and treated with different antibiotic, I'm pretty confident in that statemen. After IVIG 1 - he did great until he caught a cold, minor exacerbation, and then another cold, worse exacerbation...and then slow decline. He never got as bad as before IVIG - but I didn't wait too long to get him another IVIG (7 mos)...After that IVIG - similar - and he didn't have huge gains he had after first IVIG (granted - not as sick)...but was able to stop this pattern with the antibiotic switch. He did 13 weeks on Doxy (Doryx) and he just started Minocyline back up after a 2 week break. 9 months -or more - is typical to get well from this. There's something like 70% relapse rate for those that only do 12 weeks of antibiotics, this for mycolplasma fermentans - which is a strain of mycpP - there are about 6 kinds - but that was the study I read. Fermentans is more common type in Europe, and in Gulf War Syndrome (which was discovered to actually be systemic MycoP a while back)..theory is that these soldiers got it because either the strain was weaponized - or more likely - that these soldiers got 20 or so innoculations and then were exposed to it, and the innoculations messed up their immune system. Those sent over without innoculations did not get the disease at any higher rate than normal. MycoP has no cell wall and is extremely small. So it can cross the blood brain barrier, unlike most other antigens.
fightingmom Posted May 4, 2012 Author Report Posted May 4, 2012 Wow, what a rough ride you have been through. I really appreciate you sharing your wisdom, experience and research. I do feel this mycoP is a big issue for us. At this momment (disclaimer: tomorrow I may change my mind, lol) I'm not sure I want to do IVIG just yet. Not because I'm afraid of it, or because of any outlandish reason, but just because it seems to only be a temporary fix in many cases. And, from what I have read a good number of lyme kids regress right after and I honestly don't think our family will survive that. He will wind up hospitalized if that happens. I'd really love to take a stab at killing the bugs, detoxing and boosting the immune system -- and heading down the methylation road. I feel like it's our true shot at a full recovery. Maybe IVIG somewhere in between will gives him a much needed boost in there, but i feel like holding that in my back pocket at the moment. Has anyone made successful gains without it? I found your comment regarding the vaccines and the soldiers interesting. I have been super sick since August -- when I received about 4 vaccines on one day in order to meet the requirements to enroll back in school. It's been a downward spiral ever since. I do not think this is a coincidence and I also think the giardisil vaccine really put my son over the edge.
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