8 weeks post ivig -update

[norcalmom]

We are 8 weeks post ivig. Big improvements. But there are two areas that seems to be "stuck". Mood, which was improving daily until he got a cold two weeks ago, and has slipped, and one OCD symptom - he can't stand to see me, his father or sister eat (but esspecially me), that has changed a little in that he used to go bonkers when I swallowed my saliva, he would be watching my throat constantly when in the same room, and I would have to turn away, or play with my hair over my neck...whatever...to disguise it. He considers it a personal affront if any of us sip a drink or put anything in our mouths when he is around. He eats in the other room. I haven't shared a meal with him in 8 months or so...and the 4 months before that, every meal was a nightmare.

 

He went bonkers yesterday because I took a sip of juice when he was in the room ( he was on the other side of the other side of the room - sitting with his back turned, with a tutor doing some work, and I was 30 feet away in the pantry area, in the process of walking out the door to another room to enjoy my juice...).

 

I can't live like this any longer. The people on our new baseball team probably think I have an eating disorder. During tournaments, we spend DAYS together. Share many meals..none of which I eat if DS is in the room/restaurant and can see me. But later I can be found somewhere inhaling a sandwich before I get caught! It's almost comical. I'm not close enough to any of them to share this type of information. I might tell them DS has pandas, and about the tics and a description of it in general, but nothing really specific. If they never experienced something like this themselves, they'd never get it.

 

Maybe I'm expecting too much at 8 weeks. Maybe we need ERT or CBT to break through this one thing. I think I want to wait longer on that, becuase I think it would be very stressful for him, and I don't want more stress until I know the auto-immune part is under control, and he's ready to address the aftermath.

 

On the upside - NO tics. NO looking into the sun compulsion (huge one! that alone was worth doing the ivig for). Mood is somewhat better (but seems stuck somewhere beneath where it was prior to that cold 2 weeks ago). MUCH better focus - school is easier. He is able to sit for long periods and do work. His handwritng is even better. I can look at the Thurdsy/Friday when he got his cold and said he felt pandas-y and hated school, life, wanted to die..and SEE in just those two days his handwritng was a mess. He has messy handwriting to begin with , so that was a hard one for us to see before - how much is pandas, how much is just his writing- but looking at two days of work - you can see if right there. Sleeping well, but I have been more liberal with the melatonin, because lack of sleep just starts this bad cycle - more likely to catch a cold, more likely to be stressed, poor mood - so even tho I don't like giving pills, this is one where I see clear benefits outweighing the risks. Not every night, probably 3 nites per week, I can kind of tell when he is going to take a while to wind down.

 

That is actually a curious side effect to the ivig for us. I see more hyperness. He wasn't like that before. Soemtimes seems almost manic (when he is excited -happy)..He seemed to have ALOT of that (along with bed wetting) in the initial 3 weeks post ivig, its less-so now, but I think it went up post cold. He didn't need melatonin to fall a sleep before ivig, unless he was heading into exacerbation.

 

Now I'm in wait and see mode, and its kiling me. I didn't do the lyme testing prior to ivig (do the test people! because if you don't, you will wonder) and I would like to do a steroid burst (or taper) to get back on track after the cold but can't - becasue might make things worse if he does have underlying lyme.

 

Speaking of which, contacted a lyme specialist, and found that intial consultation is $650. Can't bring myself to shell it out. I'm going to try to get my ped to write the scrip for the IGENEX testing, and figure out on my own (with all' y'all's help) if its a clear negative - no problem, but if questionable or positive, then we'll see the lyme specialist. He doens't have any lyme symptoms other than pandas - symptoms. But he also has PITAND, and we never had high titers, or positive culture (but truthfully had suspected peri-anal strep 9 months before ever cultured, or titered.) At least I'll have some lyme testing in hand to discuss with the expert prior to the inital meeting. I hate to have to see him, and then get tested, and then see him again to discuss the test. He can't only take one test - becasue of the antibiotics he's on - I contacted IGENEX to see about that. I'm not willing to go off at the moment.

 

There are several other tests we didn't do prior to ivig. Mycoplasma is one. Circulating immune complexes another. Can anyone think of anything else? What kind of follow-up testing do your doctors do (for those of you that did ivig)? Prior to ivig we did immune panels (igg, iga, subclasses etc..) and all the "regular" stuff immunologist would order (and gastoenterologist, and dr of integrative medicine, and allergist). Not sure if we should do those immune panels or not. He was high abnormal on a couple, not close to low enough to be considered deficient. Failed 13 of 14 penmonaie titers..don't need to redo those I don't think. I can get my local drs to do the testing I want, and even the drugs I need - antibiotics and steroids - they are pandas beleivers - but they don't know what tests to do. And even if I have a pandas expert to consult with (which is difficult, so far away, so busy, and the one we saw is much more into clinical picture than blood tests, and would not do another ivig unless a clear exacerbation was going on) I still need a local doc to wrtie the blood draw script, and perscription scrip.

 

Got a cuningham test sitting and waiting too..DS doesn't know that on his 3 month ivig anniversay he's going to have a little trip to the lab! I want to wait 3 months, so that effects of the ivig not affecting levels, on any of the tests.

 

So, for the next month I'll be doing the same thing I've been doing for the past 2 - reading and worrying, and contemplating and guilting myself for not doing enough research before the ivig, or taking the time to get those other few tests done. Honestly didn't know enough to know that we needed those , until a few days before our scheduled ivig - whats a couple more tests? We've done soooo many random tests ruling stuff out- the ones we know can cause high cam K should have been top priority. If even for my own peace of mind.

 

I want to get on with my life. I want to have family dinner again.

[momto2pandas]

Glad you're seeing some results, but sorry about that lingering compulsion! Maybe it will take just a little more time to get rid of that one habit?

 

One thing I did want to say about the "mania". Some people, and in my (research) experience it's been the ones with autoimmune issues, respond to repeated use of melatonin with hypomania or mood cycling. You may want to look that up. I think it's actually contraindicated in people with bipolar issues. So maybe one thing that's happening is that you're seeing a result of using melatonin more often after the IVIG. It actually does that to me. When I used to travel overseas every month, I loved to use melatonin to fight jet lag (it's GREAT for that) and to help me sleep outside of my usual schedule. HOWEVER, I'd have to limit use to a couple of days per month, else it would launch mood cycling. Something to think about.

[norcalmom]

didn't know that. I will investigate. Had not made any connection to the melatonin. the hyperness actually started before I started to use the melatonin regularly - like immediately after ivig. I'm talking immediately - the afternoon of the first day of ivig was probably the happiest (but in a manic way) day of his life. It was probably a couple weeks after that I decided to give him melatonin to help him settle down at night when I could see he was ramped up before bed. I think its related to the ivig, but the melatonin could be making it worse. We use the 1mg pills, which is considered low dose, but I htink I will try cutting those in half or substituting Kids Calm (no melatonin in em, and don't think these actaully work, but might be a good placebo if ds thinks he needs the melatonin on nights he can't fall asleep).

 

Good catch - and thanks for sharing that info. I hate using pills to being with, so, another reason to back him off those.

[Megs_Mom]

I'm glad he is doing better. Our dd's primary presentation was severe and debilitating OCD. If we had this left as a compulsion, we would say that we were only 50/60% of the way there - this is such a large part of life. Sounds like this has been an OCD symptom for over a year now? I tend to think that children's brains are quite good at learning behaviors - so I fall into the camp that thinks that therapy for kids with severe OCD symptoms is part of the process. If you are not willing to do ERP therapy with him yet, you could spend the next 3-4 weeks simply educating him on what OCD is, explaining how you can retrain your brain to beat OCD up, and builing a heirarchy of OCD fears. This takes a while anyway, but is generally a very low anxiety part of the process. Without proper preparation, ERP would be too hard for most kids anyway. You could start by just reading a few pages of "What to do when your brain gets stuck" each night.

 

If you need ideas about how to break down this fear into a heirarchy of tiny steps that may be less intimidating, feel free to ask - but as starting suggestions - it sounds like he has this same fear with all family members, but it is worst with you? So you can start by working on him with this with a different family member - that alone should reduce some anxiety. You might see if eating vs drinking are different fear levels. You could see if any different foods rank lower. You could suggest thinks like "what is the fear ranking if your dad just licks an apple once, what if he takes one nut & holds in it his mouth but does not chew, what if he puts a fork or spoon with no food on it, what if you are blindfolded while dad takes a bite", etc.

 

Hope you continue to see improvement from the medical treatment alone - if not, getting him ready for some therapy might really help in the long run.

[Priscilla]

wow, I think we are twins. I am just the same, didn't do much testing before ivig (didn't really know exactly what to test for) and I have the cunninghams test sitting in my closet. We have done 3 ivig though, and we are seeing alot of improvements though. So my gut is to wait and see as long as we are moving in this direction. I have thought about lyme testing, even though lyme doesn't make much sense (unless it came from me) but I really worry about the accuracy of the testing, I don't want to start assaulting her system with more meds if I can't even really rely on the test results. Mycoplasma may make more sense for us, but the ivig will help. Although I am now freaking about lyme because I actually got BIT BY A TICK last week!! I lived on east coast my whole childhood and played with ticks daily, and never really had a bite like this. Well, anyway, just want to let you know I am with you. Did you only do 1 ivig? I think that we are seeing the progress we are because of doing pretty aggressive treatment (2gm/kg every 4 wks times 4) I feel like I need to give it a chance, it is for healing, not masking symptoms. We still have some moodiness, and residual OCD, all motor tics gone, but the vocal comes and goes. Our biggest problem has been the word "back" Try going without saying that for a day. I feel like I am starting to get bothered by it when others say it because I am so paranoid about it. She still gets uncomfortable when she hears it, but she doesn't try to kill me over it anymore, which is huge progress. We definitely see a 3 steps forward, 2 steps back type of pattern, but I am so happy to see my dd's personality that I haven't seen in years! I wish you the best, it would be good to get tests for peace of mind, but you may need additional ivig if you only had 1 (seems alot of kids do). Best to you

[norcalmom]

Thank you Meg's Mom and Pricilla!

 

All the suggestions on "getting ready" for therapy seem like good, low stress ways to start! The swallowing started with me, added my husband, and now his sister. AND, when we were back east for 2 weeks, and he was eating alot with his aunts, he statted in on her by the end of two week period. So, I fear this will keep him from having close relationships with people if not taken care of (including his MOTHER!)

 

Pricilla, we are twins. I am from New England originally, and remember picking tics out of my head on a regualr basis, along with picking them off the dog. My sister had Lyme disease, bullseye and all, took almost a year and 3 rounds of antibiotics to kick it. That was around 12 years ago.

 

I know EXACTLY how you feel about the word "back" -just like my son with swallowing - I am completely self concious of whenever I swallow. I look around the room. Even when he's not there. And now when/if I notice someone slerping food or gulping, I'm think ohh, that IS gross.

 

Is your doctor doing any testing post ivig's? or will he do any after the 4th one? It sounds like our kids have similar progression, we are much better, but with a couple lingering symptoms, even tho we have only had one ivig and you have had 3. Lets see..your first one was around 3-3 1/2 months ago? so you are about a month ahead of us.

 

Glad to hear it is working for you - please keep me updated on progess and if you run those cunningham tests again. And, yes, I agree we may need additional ivigs. I feel like we have some docs - perscibing multiple right off bat, and some that do one and wait and see (thats us) but do feel there is reason to believe that one works for alot of people. Its just so hard, becasue I don't know if by waiting longer periods (or for another exacerbation) that the benefit of the first one is wiped out (does that make sense?).

 

I wish they could get toether and compare notes and make some recommendation..(oh wait they DID that...WHERE is that white paper!) truthfully, I doubt it will be that specific in when and how many ivigs are recommended, but I can dream. One of them MUST be looking at publishing some case studies soon.

[momaine]

We are 8 weeks post ivig. Big improvements. But there are two areas that seems to be "stuck". Mood, which was improving daily until he got a cold two weeks ago, and has slipped, and one OCD symptom - he can't stand to see me, his father or sister eat (but esspecially me), that has changed a little in that he used to go bonkers when I swallowed my saliva, he would be watching my throat constantly when in the same room, and I would have to turn away, or play with my hair over my neck...whatever...to disguise it. He considers it a personal affront if any of us sip a drink or put anything in our mouths when he is around. He eats in the other room. I haven't shared a meal with him in 8 months or so...and the 4 months before that, every meal was a nightmare.

 

He went bonkers yesterday because I took a sip of juice when he was in the room ( he was on the other side of the other side of the room - sitting with his back turned, with a tutor doing some work, and I was 30 feet away in the pantry area, in the process of walking out the door to another room to enjoy my juice...).

 

I can't live like this any longer. The people on our new baseball team probably think I have an eating disorder. During tournaments, we spend DAYS together. Share many meals..none of which I eat if DS is in the room/restaurant and can see me. But later I can be found somewhere inhaling a sandwich before I get caught! It's almost comical. I'm not close enough to any of them to share this type of information. I might tell them DS has pandas, and about the tics and a description of it in general, but nothing really specific. If they never experienced something like this themselves, they'd never get it.

 

Maybe I'm expecting too much at 8 weeks. Maybe we need ERT or CBT to break through this one thing. I think I want to wait longer on that, becuase I think it would be very stressful for him, and I don't want more stress until I know the auto-immune part is under control, and he's ready to address the aftermath.

 

On the upside - NO tics. NO looking into the sun compulsion (huge one! that alone was worth doing the ivig for). Mood is somewhat better (but seems stuck somewhere beneath where it was prior to that cold 2 weeks ago). MUCH better focus - school is easier. He is able to sit for long periods and do work. His handwritng is even better. I can look at the Thurdsy/Friday when he got his cold and said he felt pandas-y and hated school, life, wanted to die..and SEE in just those two days his handwritng was a mess. He has messy handwriting to begin with , so that was a hard one for us to see before - how much is pandas, how much is just his writing- but looking at two days of work - you can see if right there. Sleeping well, but I have been more liberal with the melatonin, because lack of sleep just starts this bad cycle - more likely to catch a cold, more likely to be stressed, poor mood - so even tho I don't like giving pills, this is one where I see clear benefits outweighing the risks. Not every night, probably 3 nites per week, I can kind of tell when he is going to take a while to wind down.

 

That is actually a curious side effect to the ivig for us. I see more hyperness. He wasn't like that before. Soemtimes seems almost manic (when he is excited -happy)..He seemed to have ALOT of that (along with bed wetting) in the initial 3 weeks post ivig, its less-so now, but I think it went up post cold. He didn't need melatonin to fall a sleep before ivig, unless he was heading into exacerbation.

 

Now I'm in wait and see mode, and its kiling me. I didn't do the lyme testing prior to ivig (do the test people! because if you don't, you will wonder) and I would like to do a steroid burst (or taper) to get back on track after the cold but can't - becasue might make things worse if he does have underlying lyme.

 

Speaking of which, contacted a lyme specialist, and found that intial consultation is $650. Can't bring myself to shell it out. I'm going to try to get my ped to write the scrip for the IGENEX testing, and figure out on my own (with all' y'all's help) if its a clear negative - no problem, but if questionable or positive, then we'll see the lyme specialist. He doens't have any lyme symptoms other than pandas - symptoms. But he also has PITAND, and we never had high titers, or positive culture (but truthfully had suspected peri-anal strep 9 months before ever cultured, or titered.) At least I'll have some lyme testing in hand to discuss with the expert prior to the inital meeting. I hate to have to see him, and then get tested, and then see him again to discuss the test. He can't only take one test - becasue of the antibiotics he's on - I contacted IGENEX to see about that. I'm not willing to go off at the moment.

 

There are several other tests we didn't do prior to ivig. Mycoplasma is one. Circulating immune complexes another. Can anyone think of anything else? What kind of follow-up testing do your doctors do (for those of you that did ivig)? Prior to ivig we did immune panels (igg, iga, subclasses etc..) and all the "regular" stuff immunologist would order (and gastoenterologist, and dr of integrative medicine, and allergist). Not sure if we should do those immune panels or not. He was high abnormal on a couple, not close to low enough to be considered deficient. Failed 13 of 14 penmonaie titers..don't need to redo those I don't think. I can get my local drs to do the testing I want, and even the drugs I need - antibiotics and steroids - they are pandas beleivers - but they don't know what tests to do. And even if I have a pandas expert to consult with (which is difficult, so far away, so busy, and the one we saw is much more into clinical picture than blood tests, and would not do another ivig unless a clear exacerbation was going on) I still need a local doc to wrtie the blood draw script, and perscription scrip.

 

Got a cuningham test sitting and waiting too..DS doesn't know that on his 3 month ivig anniversay he's going to have a little trip to the lab! I want to wait 3 months, so that effects of the ivig not affecting levels, on any of the tests.

 

So, for the next month I'll be doing the same thing I've been doing for the past 2 - reading and worrying, and contemplating and guilting myself for not doing enough research before the ivig, or taking the time to get those other few tests done. Honestly didn't know enough to know that we needed those , until a few days before our scheduled ivig - whats a couple more tests? We've done soooo many random tests ruling stuff out- the ones we know can cause high cam K should have been top priority. If even for my own peace of mind.

 

I want to get on with my life. I want to have family dinner again.

My dd also got a cold that set her back. It was the second week post HDIVIG#2 and she worsened slightly. But the following week she worsened significantly and we figured out she had a sinus infection. It took a couple more weeks before she started making forward gains again and now only slowly, but mostly steady with a bad day (or half day like yesterday) here and there.

 

I had to laugh about your eating at the restaurant comments. I could totally picture you scarfing your food in private only to be discovered with a guilty look on your face. I know it's stressful (understatment of the year) but your family here on latitudes does understand.

 

Which tests can your son NOT take for the IGENEX testing for Lyme while he is on antibiotics? I'm now wondering if I just threw away some money as our doctor told us we could have the lyme and co-infection panel done while still on antibiotics and my dd had the draw on Tuesday.

 

From what I've read, esp. if you son has had this for a long time, 8 weeks is a litlte too early to completely beat this thing. I think you will probably have to be patient and do your best to keep any infections of any kind at bay. That seems to be the ticket.

 

Best of luck to you.

[norcalmom]

Here is the note from Igenx. The customer service was very prompt in replying - you might want to ask if antibiotics can effect the test results for the other tests you took.

 

Good luck to you - I'll be watching for your posts, sounds similar to ours (pitand?) I am wondering if you are doing ivig # 2 becaseu of a relapse, or if you were presecribed 2 or more intiially.

 

Best-

 

From: Customer Service [mailto:customerservice@igenex.com]

Sent: Monday, October 04, 2010 2:03 PM

_________________________________________________________________

Subject: RE: Inquiry from Website

 

He can do the 4090 panel if he is on antibiotics. The cost is $260.00 for the test. We can mail the kit to you just let me know if you need it.

Toni

 

 

Sent: Monday, October 04, 2010 11:47 AM

To: customerservice@igenex.com

Subject: Inquiry from Website

 

Message: I would like to test my son. He is on phophyactic antiboitics. What tests would be most appropriate for him? He is 11 years old, and has p.a.n.d.a.s. He also received ivig 9 weeks ago. Does he need to wait to take the test?

[EAMom]

 

 

I'm not close enough to any of them to share this type of information. I might tell them DS has pandas, and about the tics and a description of it in general, but nothing really specific. If they never experienced something like this themselves, they'd never get it.

 

 

I know what you mean...you really need to be a PANDAS mom or dad to "get" some of this stuff, it's just not worth explaining to moms with regular kids.

 

I so do wish these docs would agree on whether it's 1 IVIG, or 3-4 right off the bat! It seems so much of how PANDAS is treated isn't going by your child's situation, but by who your particular doc is (which is often determined by where you live).

 

I'm glad there was some clear progress with 1 IVIG.

[bronxmom2]

I agree this is a huge problem (one ivig or 3-4?). I think it is related to insurance coverage more than anything. If a family is paying out of pocket, they are inclined to believe that one will work. If insurance is covering, they are inclined to believe that benefits are cumulative.

 

Norcal-- we are also exactly 8 weeks out from his last IVIG (his 4th at 1.5). Each time I have seen the same pattern: a marked worsening that lasts about a week; then a stabilizing; then some more worsening/fluctuating; then another improvement that feels more stable somehow-- and THEN I destroy it all with another IVIG, restarting the pattern. (I was scheduled to do another one next week but have pushed it until the end of the month because I am not absolutely certain I should do it.) IVIG also seems to make him hyper, but he was always hyper. Really manic is a better word.

 

I do believe you will continue to see your son gradually improve from here... (IF he is not waylaid by illness) as would I if I stopped submitting him to IVIGS. I am looking forward to stopping; I hope to then sit back and watch him get better and better and better. I am just trying to make SURE, and since insurance is covering, it seems the best play for my hand. But perhaps I am "stirring the pot" and doing more harm than good.

Edited October 7, 2010 by bronxmom2

[kimballot]

You might want to give 5htp a try. Many use it INSTEAD of melatonin, but I use it in ADDITION to melatonin. I find I have to keep the melatoinin light (1.75 mg for ds13), or it results in nightmares and irritability the next day. I added 5 htp (100mg / night) a couple of months ago, and the combination is really nice. My son sleeps easily- but does not "konk" out immediately, he seems to relax into sleep... he sleeps through the night, and he is less irritable the next day.

[norcalmom]

KIM - thanks for the tip on the 5htp!

 

Bronxmom -Insurance coverage isn't what drives the question of how many ivig's for me. It's what works better. You are just one of many doing more than one, you aren't stirring the pot, we appreciate knowing what different doctors are prescribing. Some are doing every 21 days - like is done for some primary immune deficiency conditions (but at lower dose than HD). Some are doing 3 every 4 weeks(?) some 4 or 5 every few weeks. Like EAmom said, seems like your dose depends more on what doctor you live near (or decide to travel to) than to you child's particular profile. Since we don't live near any of them...I guess I have to decide where to go, so in a way, I'm decided how many doses he gets, not a doctor...this is the kind of thing keeping me up at night.

 

There isn't any proof that more is better. Doing 3 over 3 months may have the same percentage rate of effectiveness as doing one. There aren't any studies. We always think more is better. And if someone is getting more for their child, and its better, of course I want my child to have the same treatment. Although, Dr K did mention that he found (through trial and error) at least some anecdotal reason to believe that 1.5 worked better than 2 as a dose, so in that case I'd lean toward more isn't better since he's done soo many more of these for pandas kids. He's the only one that has pandas kids from 10 years ago that he has treated and has been able to follow. The other players are relatively newcomeers. The only problem with that is...i'm not certain how closely Dr K follow them! For how many did one ivig fail, and then, they moved onto another doctor. He may not know. ..I know that I have not gone back and relayed to the 10 or so doctors we've seen in the past year that I am moving on and why!

 

Right now I'm leaning toward trying to get another one. If he test neg. for lyme. And the timing is another thing that the docs seem to vary on...every 4 weeks, every 6 weeks...etc..So, the dose, the number, and the timing...

 

I don't want to subject my ds to the risks and drama of another ivig if there isn't proof that doing two close together is better than one. Thats a bigger question for me, even though I will be trying to get that ivig before the end of the year!-That's on the off chance my insurance does pay - our huge deductible won't reset. So, yes insurance is effecting my thoughts, but more on a how-to-get-them-to-pay level, not on a what works better level.

 

Thank you for letting me know how your doctor is treating you. I take it that in between or after he does not do any tests? I was hoping that if you buy into the idea that the particular autoimmune mechanism that causes the symptoms is related to the anti-neuornal antibodies (and cam KII levels) that maybe one of the doctors out there was measuring these between ivigs (or at least at the end of the 3 in a row) to see if they dropped. But doesn't seem like it. Maybe the ivig messes up your levels for so long, you can't tell your real levels for some time.

 

Thanks for all your responses and the info!

[bronxmom2]

hey norcal-- I didn't mean I am afraid I am stirring the pot on this board... I meant I'm afraid I am stirring his pot of antibodies, not giving the process enough time.

 

About tests between treatments: nope. This is one of the things that keeps ME awake-- no one seems to be really tracking these kids and their outcomes, except us. I for one am mentally tracking things on here, somewhat compulsively... I tend to remember kids CamK numbers, titer numbers, their profiles on the Cunningham tests, the treatments they've had and what seems to be working. It is weird that we as parents are making so many treatment decisions. Perhaps we are lucky...still under the radar and empowered...I am reading "Cure unknown" about Lyme, and it's truly alarming what happened to the treatment protocol when the CDC and NIH got involved and insisted that Lyme was ALWAYS cured by a single course of antibiotics.

 

Were you on this board when Dr. Trifilleti (sp?) was posting? A few times he pointed out that something truly revolutionary was happening here-- knowledge evolving between parents-- I think he was right about that.

 

Dr. T seems to be extremely intellectually curious about PANDAS... perhaps it would be worth you time to try to arrange to talk to him?

[EAMom]

Perhaps we are lucky...still under the radar and empowered...I am reading "Cure unknown" about Lyme, and it's truly alarming what happened to the treatment protocol when the CDC and NIH got involved and insisted that Lyme was ALWAYS cured by a single course of antibiotics.

 

 

agreed

[Fixit]

Perhaps we are lucky...still under the radar and empowered...I am reading "Cure unknown" about Lyme, and it's truly alarming what happened to the treatment protocol when the CDC and NIH got involved and insisted that Lyme was ALWAYS cured by a single course of antibiotics.

 

 

agreed

 

i think i said something similar about ...even though there is real no real protocal...maybe that puts us in the sweet spot...as we can direct what is going on....

once they come up with...3 rounds abx.. 2 rounds ivig....alot of kids will be in trouble....

perhaps we are best left to finding docs we have to travel to, in order to get the extended care i believe these kids (will) need....it is not a 1 time treatment for most of these kids(though it can be for a few)

i hope that is what comes out of this white paper...

Edited October 10, 2010 by Fixit