IGIV - is it time?

[Bill]

Hello all. I've been "lurking" for the past 1 1/2 years. I've not posted before as I really have little to add to this wonderful forum as we are still finding our way through all of this. And frankly, we've not hit upon anything that has worked - yet. Like many, I started out on the PANDAS forum and have gravitated here with new diagnosis....I think the time has come for me to join in and of course - I have a question for the experts.

 

The quick question, we have been treating for Lyme for about 3 months (antibiotics). Son was diagnosed with strep (PANDAS), Lyme (Igenex), bartonella, and Dr. J. believes babesia is at play. We have seen some improvement in eyes and a foot (dystonia) but not OCD, not behavior. If anything, OCD is getting worse again since December. I learned that Dr. B wants to to IGIV. I've been scouring the forum to figure out if we should proceed with IGIV now or wait a little longer?

 

What do folks think?

 

 

The summary of our journey - some of which is hindsight......

 

Currently, 12 years old; diagnosed with generalized dystonia, PANDAS, severe OCD (contamination), Lyme, Bartonella, anger issues (controlled by SSRI), and those wonderfully dilated eyes.

 

Perfectly healthy little boy with sweet disposition. Very happy. No terrible twos.

 

We had the terrible fours that I now recognize as rages. After six months, settled down. Not quite as sweet and happy but hey, he was growing up....

 

We looked at old pictures when he was five, fingers on his right hand are spooning slightly. In kindergarten, we can not determine if he is left or right handed. He's not really successful with either hand holding pencils. (He settled on left but really, we still do not know.)

 

At 7, his behavior begins to deteriorate. His walking becomes abnormal (irregular gait, leaning over). Physically, he seems to stop progressing as far as coordination and athletic abilities. He's my son so I wasn't too worried about lack of athletic ability : ) but he should not be moving backwards either. At some point, his pupils become dilated until they are mostly black most of the time.

 

By age 8, he is diagnosed with Dystonia by neurologist who shrug us off for the emotional changes and the eyes. Fortunately(??) Zoloft tames the rages (for the most part).

 

For over three years we see doctors and all I ask is that they consider the movement disorder and behavioral changes (and eyes) together. All of the neurologist we see shrug us off sticking to the dystonia diagnosis and referring us to psychiatrist for behavioral. Psychiatrist are happy to keep writing the prescriptions. We feel we have no choice; when we try to remove/reduce the Zoloft, raging returns within a day of a dropped dose. As an aside, I could tell no one believed me when I relayed that his behavior improved within hours of his very first dose of Zoloft. During this time, we find that Artane helps with the dystonia; over the years, the dosage increases as his dystonia worsens. During this period, we observed a pattern of increased anger soon followed by increase in dystonia symptoms. And the doctors shrugged......To be clear, we never observed saw tooth. My son's journey has always been bumps up (or down depending on one's perspective).

 

Just under two years ago, we are hit by raging (Zoloft no longer working); worsening of dystonia (which we predicted based on behavior worsening), and then comes the OCD (contamination). Fortunately, the then current psych. utters the word PANDAS which sets me off on this journey. The summer of 2009 was pure ###### as many of you are familiar with. The OCD was unbearable. The raging was worse. We started looking into facilities that could take him.....In late July, Prozac was prescribed and like the miracle Zoloft provided some 3 1/2 years earlier, the raging was manageable. Don't get me wrong - I hate giving him the SSRIs but it is better than our other alternatives (are there any?)

 

That also gave me time to start identifying doctors for the PANDAS. My son had PEX through Dr. L in November 2009. His eyes improved but nothing else. I asked about Lyme testing but they came back negative. Several months later (last summer), was able to have Lyme testing through IGENEX and a doctor who has experience with respect to tick borne illnesses and suspected bartonella as well. Both were positive. We spent some time doing consults and figuring out which doctor would lead the treatment. Though we had been working with Dr. L.; we also consulted with Dr. J. (on advice of Dr. L. and local doctor) and Dr. J. recommended consult with Dr. B. We opted for the local doctor to oversee treatment. This is not a negative against any of the other doctors, we just felt that having someone local would be better for us long term. We also felt that she (an internist) could help us through all of the direction from these experts. Our initial exam with Dr. B. was in October, follow-up will be Monday 31 January. And yes, I (we) feel very lucky to be able to consult with 3 out of a very small number of doctors nation wide who get any part of this. (I'll feel luckier when the OCD turns around.) I should mention that we also were seen by Dr. Perlmutter (psychiatrist) and Keith Saylor (psycholgist) in Herndon, VA - both who are PANDAS savvy.

 

Right now, my (12 year old) son is on the following (below). I say three months but really we spent the last three months getting to this point. Augmentin, zithro, and tindamax have been pretty constant since early October. After the last couple of months, his foot is much better (just one area the dystonia was affecting) and we discovered his blue eyes again (yeah).

 

Artane: 2mg daily

Prozac: 20mg daily

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

B12 2,500mg periodically

Vitamin D 2,000 IU periodically

Coenzyme Q-10 100mg day

Vitamin C 500mg periodically

Florastor 2 daily (Saccharomyces boulardii, 250mg)

Probiotic CP-1 2 daily (Acidophilus + Bifidus, 50B)

Saccharomyces Boulardii + MOS 5B/capsule X 1 daily

 

We also tried the following for one weekend only. My son agreed to try it again in another month (or two).

Nattokinase 36mg X 1 (Sat. night/Sun morning)

Lumbrokinase 20mg X 1 (Sat. night/Sun morning)

EDTA 500 mg X 1 (Sat. night/Sun morning)

 

Sorry for the long post. Guess that's what one gets for holding out for so long. If you're on this forum, then you understand that the above is the highest of summaries. My next posts should be more coherent.

 

Thanks, bill

 

ps - I do not check this forum every day but will try this week!

[sf_mom]

Bill,

 

Your son's journey is heartbreaking but I am grateful you have gotten the necessary help to start the process of recovery. I am relived to hear he is making progress with the most recent change in protocol. Perhaps slow... but progress and that is what is important right now.

 

You have essentially asked the million dollar question that all of us want to know the answer too. Is hdIVIG an effective treatment for a child with Chronic Lyme disease that has an initial on-set of PANDAS like symptoms or vice versa.

 

Unfortunately, there have been mixed results. Some children have done well and witnessed huge improvements post treatment. Our son, actually did well post treatment and the OCD essentially remitted after his 3 hdIVIG treatment. BUT, I also need to clarify that our son was kept on a higher dose antibiotic post his last hdIVIG treatment and eventually treated with a Lyme like protocol when his remaining TICS post treatment started to resolve. This was in advance of Lyme Diagnoses in August of 2010.

 

While others who were initially treating for PANDAS and then eventually unraveled Lyme have had a horrible response or saw no benefit from treatment. It is very possible that there was a huge herx 'worsening' of symptoms for an extended period of time and then a return to prior baseline because the lower dose antibiotics were not killing infection/s correctly and children were subject to relapse due to the bacteria getting ahead of ones ability to kill it. I have asked our Dr. frequently about the use of hdIVIG and why it might not be working for some and he mentioned a possible cytokine storm = inflammation. Our Dr. does use it but I believe it is typically at lower dose and only under certain conditions. He has not recommended it for our PANDAS/Lyme children, yet.

 

My standard recommendation is to hold off on hdIVIG and get the bacterial load down (less bacteria, less die-off, less herxing response). If your child does not make progress over months (6 month to a year) then I'd be reconsidering it under the direction of your LLMD.

 

I do believe your son's OCD will remit but if he has Babesia/Bartonella/Lyme/Strep.... its going to take time. AS YOU KNOW it took years for your son to develop full blown symptoms and it may take years to unravel them. Typically, two years for the AVERAGE child with Lyme Disease.

 

We are 18 months into treating: 12 months dedicated towards PANDAs treatment and 6 months toward treating Lyme. We recently added an additional antibiotic to our son's regimen and within 48 hours his mood liability melted away and has yet to return. We traded a few symptoms since and are again dealing with frequent urination and some recently cropped up coughing jags. He did have manic 'talkative' moments with dilated pupils but that has since settled and we are 22 days into new regimen. I'm outlining this all because sometimes you need to hit a stride with antibiotics and suddenly there is huge advances. In our case, most recently its was the mood liability.

 

Hope that helps and I am sure other will chime in on their experiences.

Edited January 25, 2011 by SF Mom

[Bill]

SFMOM - thank you for your input.

 

I went to bed last night realizing that I forgot to list a lot of his symptoms that are common to many here (tics, poor math, limited diet). I also did not list some of his symptoms that are opposite to many here. He urinates twice a day - whether he needs to or not as the saying goes. Sometimes he goes three times a day now, perhaps a small victory as well. No problems sleeping. Aversion to sound/light? Nope! Light does not bother him and seems like I'm always yelling at him to turn the TV down. His hearing is fine, we had it tested. He also recently started eating pot pies to include the vegetables inside. This is a kid who won't touch pork&beans and mashed potatoes or much of anything else in the last couple of years. So yes, I do see eating the pot pies as an interesting development. He also hyperflexes at the elbows like nobody's business. As silly as that sounds, doc. believes that to be another sign of the bartonella. Who knew.

 

Just wanted to mention these as these are the other reason I've not posted sooner. For as many symptoms he shares with many others, he's the exact opposite on many as well. (Dr. J. relayed that he usually sees the opposite of dystonia, the term which is escaping me at this early hour.) I should also mention that Dr. J. believes Lyme & associates have been an issue for longer than a year. Dr. B. believes months but less than a year. : ) Like most here, we have no way of really knowing what came first or when.

 

I do believe that we are on the right path though. This million dollar question is on my list of questions for Dr. B.

[MichaelTampa]

Hi Bill. I'm an adult who has likely had lyme since childhood, so I'm the patient and don't have any kids. My lyme doc prescribed IVIG about two months into treatment. I would have done it if it were approved by insurance, but by the time that happened, I had stopped treatment, was feeling somewhat better, and then while I still need to continue treatment, feel that I can win this thing without it. Three months in seems a little early to me, but I don't know how much my opinion is worth, I have never taken it. Sounds like you have seen some improvement but not a way lot, and perhaps the IVIG would really help, if not now, perhaps in another couple months. It's a risk-reward thing, the concerns I had were mostly related to what else am I going to get with all these people's blood. If, in a couple more months, you haven't seen a lot more improvement, I think it will be time to be questioning what is holding him back.

 

Other things you might consider now is more detox and trying to deal with parasites/worms, which many (all?) with lyme have.

 

Word of warning on the prozac, or reminder, if you will. As you assess improvement or lack thereof on the OCD, remember, you are judging where your son is now on prozac, and the use of prozac affects your ability to judge your son's improvement and symptoms without the prozac. This is such a tough situation, I've been there, taken it twice briefly, so desperate would have taken anything to try it, it was horrible so I had to stop it, and then got suicidal on the trip down, which is not uncommon. So, I want to suggest you see if you can do without that now, perhaps the OCD is now related to the combination of lyme plus prozac, and prozac is part of the problem. This disease and that drug are both such roulette wheels, and the combinations are just unpredictable. On the other hand, it is not easy to just willy-nilly lower the dose, and up the dose, and all that. So, don't think I can suggest anything here other than, remember you're giving the prozac and it is affecting him.

 

Good luck!

[Bill]

Hi Bill. I'm an adult who has likely had lyme since childhood, so I'm the patient and don't have any kids. My lyme doc prescribed IVIG about two months into treatment. I would have done it if it were approved by insurance, but by the time that happened, I had stopped treatment, was feeling somewhat better, and then while I still need to continue treatment, feel that I can win this thing without it. Three months in seems a little early to me, but I don't know how much my opinion is worth, I have never taken it. Sounds like you have seen some improvement but not a way lot, and perhaps the IVIG would really help, if not now, perhaps in another couple months. It's a risk-reward thing, the concerns I had were mostly related to what else am I going to get with all these people's blood. If, in a couple more months, you haven't seen a lot more improvement, I think it will be time to be questioning what is holding him back.

 

Other things you might consider now is more detox and trying to deal with parasites/worms, which many (all?) with lyme have.

 

Word of warning on the prozac, or reminder, if you will. As you assess improvement or lack thereof on the OCD, remember, you are judging where your son is now on prozac, and the use of prozac affects your ability to judge your son's improvement and symptoms without the prozac. This is such a tough situation, I've been there, taken it twice briefly, so desperate would have taken anything to try it, it was horrible so I had to stop it, and then got suicidal on the trip down, which is not uncommon. So, I want to suggest you see if you can do without that now, perhaps the OCD is now related to the combination of lyme plus prozac, and prozac is part of the problem. This disease and that drug are both such roulette wheels, and the combinations are just unpredictable. On the other hand, it is not easy to just willy-nilly lower the dose, and up the dose, and all that. So, don't think I can suggest anything here other than, remember you're giving the prozac and it is affecting him.

 

Good luck!

 

 

Thank you for the advice. I understand regarding the prozac. Those drugs scare me and we are anxious to see him off as soon as possible. Your other insight is spot on as well. I think (I hope) I mentioned that the medicine list I posted was his current and while the antibiotics stayed relatively stable, we were changing a lot of other things during December. For example, we lowered his Artane from 12mg/daily down to 2mg daily (under neurologist direction). His mood was so good, we did lower his dose from 30mg to 20mg. Had a rough couple of days but he evened out again. Hmmm, just checked my "medicine" record, his OCD started increasing about 2 1/2 weeks after dropping the dose for prozac. It has a very long half life so not out of the realm to consider it as an impact. One of the reasons we are trying to reduce these medicines is so we can more accurately gauge progress. We are remaining steady for the month of January but will likely drop the remaining 2mg Artane in February. I know those changes are probably masking changes (good or bad)...

 

More contact with Dr. B.'s office today. They want to cancel our appointment on Monday and schedule for the IGIV instead - yes next week.....my wife reminded them that I have questions that need to be answered. Tentatively expecting a call from the doc on Thursday. Although it's a road trip for us, I'm inclined to keep Monday's appointment so I can have my 15 minutes face time. The IGIV is an option that need not be rushed. He said on our first visit that my son's OCD would not relent without IGIV but I was too tired/frazzled to follow up with a question (or did he get called away and I forgot by the time he came back). He has repeated the (14) serotype testing and basing his decision on those results (or basing insurance approval). As far as I can tell, all of his numbers are lower than they should be - 10 out of the 14 are < 0.3 mcg/ml.

 

I have to apologize again. Waiting so long to post means I'm not posting the whole story at once so I'm asking folks to weigh in based on partial evidence.

 

Thank you, bill

[sf_mom]

Bill,

 

We have a similar issue with all our children... essentially no strep pneumo titers and even severe deficiencies in IgG Subclass 1 and 3 in our twins. Our LLMD feels hdIVIG is still not warranted at this time even with those deficiencies and claims they will resolve. I am holding my breath until we retest sometime in the next year to see if he is right.

 

-Wendy

[Bill]

Bill,

 

We have a similar issue with all our children... essentially no strep pneumo titers and even severe deficiencies in IgG Subclass 1 and 3 in our twins. Our LLMD feels hdIVIG is still not warranted at this time even with those deficiencies and claims they will resolve. I am holding my breath until we retest sometime in the next year to see if he is right.

 

-Wendy

 

 

Hi Wendy, my wife was finally able to speak to the doctor today. He indicated that it was possible for my son to recover without IGIV but that it would take longer.....One of our concerns of course is multiple psychiatric doctors have stated that the longer he has OCD, the less likely he will make a full recovery. We are coming up on two years no breaks........None of the therapies made a dent. He simply has zero will power against the OCD.

 

Well, they have not received approval from insurance so I have more time to think about it. With more storms predicted for the East Coast next week, I'm also not anxious to travel right now. I'm leaning towards waiting another month.

 

thanks, bill