Single IVIG infusion for 2 consec months

[GraceUnderPressure]

Dr. R is continuing to treat our ds18 until we are able to see our new LLMD on June 20th.

Our ds is negative for strep (FWIW), possible for myco, & positive for Lyme.

Previous attempts to use augmentin & later doxycycline led to stomach upset

 

He is currently doing fairly well on zithromax, zoloft & an herb called lomatium (which seems to have helped reduce our allergies this year - yay!) I would say maybe 10% improvement? Perhaps more, but definitely less than 25%, though we are so grateful for ANY improvement at this point.

 

Our insurance starts new deductibles on June 1st, so Dr. R added Omnicef that we just started last night, & then has offered to do an IVIG infusion this Wed & another in a month. He said that United Healthcare does not require pre-auth for IVIG with a PANDAS dx, BUT that he is more likely to get flack & we're more likely to have to fight with them if he uses Dr. K's HD 2-day infusion.

 

Should we go ahead with the 1 infusion (I believe he said over a 6hr period) 2 months in a row or is it worth fighting with UHC to do the 2-day Dr. K version?

 

He also wants to try short-term steroids to bring ds's inflammation down. Since ds is on abx that are effective treatments for Lyme, should we consider it?

[lyme_mom]

Absolutely do not do steroids if your child has Lyme or is suspected of having Lyme or any other infection. A llmd would tell u not to do steroids because it can make the infection worse. I would not rush into ivig either until you have tried the Lyme protocol w a llmd. Ivig may not be necessary and there are risks with it. I have been told they do not test it for Lyme. U might get a cancellation sooner if u ask or call another llmd.

[LNN]

If insurance calendars weren't a factor, would you be wanting to do IVIG as an ongoing treatment for lyme? I think that should guide you, more than a feeling that this is your "last chance" to do it (tho I do get how you might have that feeling).

 

Do you have any concerns that if you were to pursue IVIG under a Pandas dx, would it effect your ability to get a lyme protocol covered for the upcoming insurance year if two months later you see a different doctor who gives a lyme dx (not saying it would - just asking).

 

I think the hypothesis that drives current Pandas IVIG protocol is that if you give HD (1.5-2 g/kg) you have a better chance of suppressing the autoimmune reaction than you do with lower doses. Since giving that much immunoglobulin in one infusion would be challenging (and for your DS, it would be a very high volume), it's more practical to split it into two days. However, lower dosed IVIG is used to support the immune system and reduce immunodeficiency. So it's possible that a lower dose might be more beneficial than a HD to help a body fight a chronic infection like lyme. Just speculation on my part. I am quickly reaching the limit of my understanding here.

 

Just to add to your confusion, I have to say that omnicef (in combo with other abx) has been some powerful stuff for my DS and caused some significant and lengthy herx reactions. Likewise, HD IVIG had a similar and prolonged effect on him - lots of difficult symptoms to cope with in the aftermath. To start omnicef and then do IVIG within the same week could be a very strong mix. If you were to do IVIG, I might consider waiting until you had at least a few weeks of omnicef under your belt to see how his body was handling it. Otherwise, you could be throwing more at the body than it can handle at one time. I would also make sure you had a detox plan in place.

 

I know it's a lot to consider and the pressure of having a deadline must be stressful. I also know some members feel that IVIG has helped their children fight chronic infections including TBIs. In this regard, my DS may be an exception. But our experience is that he's made more progress with the right combo of abx than he did with IVIG. Had I known about the TBIs back then and if I had the gift of hindsight, I would have skipped IVIG and focused on an abx/herbal TBI protocol with plenty of detox. But I often feel that I'm in the minority here and don't mean to discourage you from following your gut.

 

Best of luck with your decision.

[tpotter]

Both my DS's are diagnosed with Lyme (one is highly suspect of Bartonella.) We are doing Lyme protocol, and also IVIG (have had 4 since starting IVIG protocol.) IMHO, I believe that it's important to help the immune system fight all infections while treating with abx. That's why we're doing both. Again, this is my personal opinion, and I do believe that both IVIG and abx have helped (although we're not seeing a lot of difference with DS 15 concerning abx for Lyme. But, he does have the bartonella rash. IVIG has definitely helped both boys.

[Iowadawn]

tpotter-

 

Curious on IVIG dosage. Our son is PANDAS/lyme (3 B's). Currently abx trx and IVIG. We had 2- 1.5g/Kg with PANDAS dx. Have had 1 HD & 2 at .75g/Kg.

We seemed to do MUCH better with HD and had a lot of neuro/psych bleck after the two low ones. Curious. We started seeing bartonella rashes on ds12's back when we added grapefruit seed extract (per LLMD) to bust up biofilms. It has looked pretty nasty at times. We have a blank slate from insurance co for IVIG's for 1 year. We took a month off and I am really thinking that we will try the HD in May and possibly at two month intervals. Before lyme dx the IVIG's would give us about 8 weeks of positive trending before we stalled & then spiraled. Thanks. Just curious.

Dawn

[GraceUnderPressure]

Our treatments for our ds have really been handicapped by his many issues. Dr R feels that ds most likely has a lot of brain inflammation right now that needs to be brought down before we will see any more improvement. The reason I am pushing for the IVIG now is not just because our deductibles restart in June, but esp. in hopes that it will help bring ds back enough that we can try more & have more options available to us.

 

My concern is that the single infusion won't be big enough to help. We can't afford to waste the money or the opportunity we have here. The receptionist is supposed to call me back with more info about dosing & any prep we should do, but right now we are set up for a Friday afternoon IVIG over a 4 hr period. That does not sound like it will be enough particularly given that my ds is 18 - about to turn 19 in May! I am considering pushing for the 2-day HD treatment that Dr. K advocates.

 

I realize that I am tossing the dice here, but Dr. Burrascano - who I realize is not the last word on Lyme, but still seems to be more worthy of consideration than most - advocates IVIG for Lyme patients to help repair neuron damage. He retired from practice to do research, but he still presents at the ILADS conferences & at the 2009 conference stated that "IVIG plays a much bigger role than ever expected" & again in a 2010 talk regarding chronic Lyme, "If neurologic symptoms do not clear, there is the option to treat with IVIG". We are most definitely candidates for the "neurologic symptoms that do not clear" award, so I am hoping & praying that this might give us the boost we need.

 

So, acquiesce to the single dose without resistance or try for the 2-day?

[JAG10]

GUD,

 

One thing I wanted to add after reading your comments on the other thread about insurance....it is true, it depends on how the physician is coding the dx. We have BCBS Keystone which is a direct HMO. My girl was not approved for a single 1 or 2 day infusion but rather "12 treatments within a 6 month time frame." I'm not exactly sure, but I'm guessing that each day of her 2 day treatments counts as one of those 12 treatments, wouldn't you think? I've also seen other folks post that they were approved for a period of time versus a specific treatment, if that makes sense.

 

One good thing in this crazy journey of ours, it surely seems like folks are having an easier time getting approval; either the docs are getting better at making their cases or the insurance companies are feeling pressure from another source.

 

Good luck!!!!

[peglem]

What would the actual dose be? My daughter gets 1.5g/kg in a one day infusion.

Lower doses work by correcting low IgG. Higher doses are given for autoimmunity- when the body detects high #'s of IgG protein in the system it suspends making its own IgG, including the ones that are against self. The higher doses are also supposed to be anti-inflammatory.

 

We get monthly infusions (as far as I know my daughter does not have lyme or co-infections, but has not been tested). The 1st 2 infusions were low dose, and we really had a tough time after those. The higher doses seem to have fewer side effects for her than the low dose ones did.

[GraceUnderPressure]

Argh! Is there nothing easy in dealing with this @#%*? Finally got a call back & the dr said he's planning to do a 20 - 25 gm (most likely 20 per the nurse) infusion over 4hr & no recommendations for prep like benadryl or ibuprofen or steroids cuz he doesn't anticipate side effects.

 

DS18 is 147lbs so that's definitely low dose. I do not know why the dr is going so conservative esp. since he normally uses Dr. K's protocol. That can't be because of the insurance because I am seeing recommended dosages much higher than that. I am thinking of just canceling the IVIG till we see the LLMD, but I did call back & left a message that I am concerned that the dose is too low to achieve suppression of the autoimmune process based on the dosing protocols I've been looking at, asked if we could try to get Dr. K's protocol approved or at least do Dr. T's 1-1.5g/kg over 6-8hr. I am hoping that we can still work something out. Any advice?

[butterflymom]

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Edited October 9, 2015 by tampicc