matis_mom

I hear you! The wait can be a pain, but at the same time, it can be a time to recharge. It seems you've covered all the bases, you got the ball rolling. Now try to just sit back and relax. Rejoice in the progress made. I have somewhat the same feeling about not having a clue at the beginning (also about a year ago) how long this would take, how many ups and downs there would be. I have a strange dicotomy between feeling "Yes, we can do it, he will get 100% back to normal" and just being at peace with where he is at right now, ie., not completely well but manageable, and we kind-of have a game plan. But then he flares and my heart sinks. So this is probably not helpful to you, but I just thought I'd share that. About tough evenings (and I've just had one!), I would suggest you try your evening routine a heck of a whole lot earlier and see how it goes. They are tired, you are tired, everyone melts down (including Mom in my house!) This is a lot more common when we are out for sports, come home to a rushed dinner, and then are racing to get to bed, because my brain is fried and I just want some head space. I just decided we will be having dinner before sports, even if it means eating at 4:00pm! We'll see how it goes. Hang in there! Isabel

I was checking the link about celebrities, look at this! Jessica Alba - (born April 28, 1981) is an American actress whose TV and film credits include Dark Angel, Honey, Sin City, Fantastic Four, Into the Blue, Idle Hands and 2007's Good Luck Chuck. Alba's early life was marked by a multitude of physical maladies; she suffered collapsed lungs twice, had pneumonia 4-5 times a year, a ruptured appendix, and a cyst on her tonsils. She has also acknowledged suffering from obsessive-compulsive disorder during childhood. Her health improved, however, when her family moved to California. I guess she had both strep and mycoplasma? Can you imagine how different her life might have been if they had treated her properly?

I got this from http://www.cpnhelp.org/concernsantibiotics (very interesting website about Chlamydia and it's role in autoimmune disease). I thought I would help those struggling with the idea of long term antibiotics. (I think CAP stands for combination antibiotic protocol) Answers to Concerns About Long-Term Antibiotics Many doctors, and patients, raise concerns about the long-term effects or side effects of antibiotics, and are frightened of the CAPi’s because of this. Doctors, especially, need a little support for going against the grain of their training. On the issue of side effects- As I noted in a ThisIsMs post, the side effects of MS are devastating disability and death. Kinda puts a scale on things, doesn’t it? Similarly: •The side effects of Chronic Fatigue and Fibromyalgiai are minimally functional existence, depression, unrelenting pain. •The side effects of Rheumatoid Arthritis are unrelenting pain and encroaching disability and dysfunction. •The side effects of Alzheimer’s Disease are… well, you get the picture. The side effects of the antibiotics commonly used in CAP’s for Cpni are intestinal upset from killing bowel flora, nausea if not taken with food, and some idiosyncratic effects for different people. All of these are transient, and mild or can be handled with counter agents (such as supplementing bowel flora in between antibiotic dosages). The main side effects patients with Cpn have are actually die-off reactions from Cpn bacterial kill. Patients who do not have Cpn (or other significantly endotoxic bacteria) will not have these typical die-off reactions to Cpn. These, then, are not “side effects” but actually main effects. Long term antibiotic use is harmful- Many antibiotics, especially the tetracycline family such as the doxycycline used in most CAP’s or minocycline, have been used long term (i.e. for years) without harmful effects. They have been used this way as immunomodulators, in low dose protocolsi (such as for arthritis) and at regular doses for acne. Flagyli/Tinidazole are potentially carcinogenic- Studies of carcinogenic effects are done on rats with huge doses not used in humans, and are taken continuously to produce these effects. This is another good reason why these medications are pulsed in the CAP's rather than taken continuously. Note: Cpn left to proliferate in tissues is potentially carcinogenic as well. Doesn’t long term use of antibiotics create bacterial resistance? The use of two anti-replication antibiotics which work on different proteins in the replication process (e.g. doxycycline and azithromycin combo) is done specifically to minimize the possibility of resistance. Taking NACi to kill the infectious Elementary Bodyi stage of the Cpn organism and Flagyl/Tinidazole further minimizes resistance because, as Dr. Charles Strattoni noted in an article by this name, “Dead Bugs Don’t Mutate.” Additionally, these antibiotics are not the ones used to treat the dire acute disorders where potential resistance could bbe fatal such as acute septicaemia, acute meningitis etc. So any potential resistance is unlikely to influence treatment of such emergency disorders. Won’t antibiotics cause yeast infectionsi? If you don’t supplement regularly with probiotic flora you can get intestinal Candida imbalance (dysbiosis). Supplementation, plus appropriate use of antifungals for existing infections (nystatin, diflucan, oregano oil, etc.) will prevent this. On a related note: Cpn can infect the bowel quite significantly. Dr. David Wheldoni has observed, "The resolution of fungal infections is quite remarkable. I've seen people with long-term dermatomycoses (unresponsive to antifungals) which have paradoxically resolved with Cpn treatment." Many of us with what we thought was chronic yeast infection noticed that after a month or two on antibiotics our “yeast problem” resolved quite a bit. The problem was, in fact, that bowel Cpn was the more central problem, and as it resolved so did other bowel problems. Resolving bowel Cpn also enhances the bowel immunei system, since Cpn can infect immune cells. Additionally, the secondary porphyriai can cause bowel and stomach problems that resolve as the Cpn infection causing the porphyria resolves. To summarize- You can reinforce with your doctor: That the “side effects” of otherwise untreatable diseasesi are much more significant than the side effects of these common antibiotics. That these antibiotics were especially chosen to have minimal long term effects, That they are used long-term for other diseases simply as immune modulators, That the more toxic ones (e.g. Flagyl) are used in pulses minimizing their harm potential, That the dual abxi prevents resistance from arising in long term use, That the gut flora effects can be readily balanced by probiotic flora supplementsi and by anti=yeast medications (e.g. nystatin, diflucan) or herbs. That the use of NAC instead of amoxicillini not only further protects gut flora, but protects the liver as well.

I thought this article was worth sharing. http://www.suite101.com/content/mycoplasma-and-autoimmune-disease-a251752

My son's bloodwork shows he's had it, but I had no clue he'd had it! I believe yes, everything contributes.

Hi Erica, You are so blessed to have changed doctors, and it looks like you have a good one too! The fact that you saw such a dramatic improvement on antibiotics is, to me, the biggest factor in leaning towards a PANDAS diagnosis. It seems you are in good hands with your doctor and hopefully you will see continued and sustained improvement on the Clindamycin. If you spend a bit of time reading this forum, you will see that even though strep is the most common trigger, other infections can cause symptoms, so while it's great you've been able to make such a clear connection, keep an open mind about testing for other possible infectious agents (mycoplasma, Lyme, etc).

Not that he has in real life, but I keep thinking of Jack Nicholson's character in "As good as it gets." That and the mention of Einstein and Mozart just reinforces the notion that PANDAS people are bright, and even while "sick" they can be creative and productive, I think it is reasuring in a way.

Thanks for setting my mind at ease!

OK, I am really hoping for a negative answer here! Can you get Lyme from eating venison? Does freezing/cooking kill the spirochetes? Please someone?

Hi Stephanie, DS12 was on in about a year ago for strep in the gut. I still have some left since the dose was very minimal, like 1/2 capsule every other day, and we had to work up to that dose. How much do your boys get? Isabel

I'm editing my post because I realized I had misread something. So, yes it could totally be the canary effect, DS always gets that to the point we know someone has strep because of his change in behavior. If you haven't already done so, get to the doctor ASAP! Go to an urgent care center if you have to, do not wait until Tuesday. If it is strep, the longer you have it the more likely you'll give it to other family members, and the longer your son is exposed, the worse the exacerbation. So try to get it checked out as soon as possible and check others in the family as well. Also, do not discount him getting an infection as well. My son got an ear infection while on high dose Augmentin. So if it's just an increase in PANDAS symptoms, it's probably just the canary thing, but if he seems to be getting sick himself, take him to the pediatrician and get it checked out. Hope I'm making sense here... Wishing you the best! Isabel

I know you must feel horribly upset and confused right now but, have you considered the possibility maybe IVIG is not the best thing for your boys right now? I was really surprised when our ins. co, which usually approves PEX without a problem, messed up and approved it as out patient. This was supposed to take place end of July, perfect timing we thought. My husband had time off, we had everything lined up. Well, we are still waiting on the appeal! But it turns out it would have been a really bad time for ds to have PEX since we have some unresolved strep issues in the family. Maybe instead of hitting your head against the wall with the insurance company, you could try other venues?

Just as an example, for my 80lbs boy... 1st week 40mg/day 2nd week 30mg/day 3rd week 20mg/day 4th week 10mg/day

I know the feeling with docs who won't cooperate! I had a doctor who was cooperative about swabbing but wouldn't prescribe anything other than amoxicillin, even though I had elevated ASO. Through a friend I found another practice where the doctors are a lot more proactive. I would try talking to friends/neighbors and see if you can find someone that way. I am happy with my new doc, they see dh too, so it's good to have us both in one place. I'm even considering switching ds there... She was totally on board with renewing our prescription around the time ds was going to do plasmapheresis. It's not easy, I know. But at least as a grown up, you don't have to transfer records and stuff. You can just walk in there, try them out, and move on to the next practice if that doesn't work. Good luck finding some help! And in the meantime, I agree, try the minute clinic at CVS. We've used them before and they don't question much, although they are limited in what they can prescribe.

Wow! Thanks for the warning! There is bipolar in my family, and I've never had anestesia so it would be a big deal for me. I wasn't thinking of it as a way to not get strep, but rather help clear the current infection (which I don't think I've clear) I'm going to the doctor tomorrow and see what they say. Thanks all for the input.

I don't have any suggestions except that you call now to make an appointment with Dr. B for your younger son. Hopefully your pediatrician will do something (I think most pediatricians will rather prescribe that face the wrath of a worried mother), but just in case, it's good to make an appointment now since usually it takes weeks to get in to a PANDAS specialist. Let us know how it goes.

I am so sorry about all this! I understand your anger and your decision to just do it. I hope you do find the energy to complain and appeal and do whatever it takes to get this straightened up. If I understand correctly, these things are subject to "peer" review. I really don't get why a pediatrician is being asked to give an opinion. I'd be going off the deep end too! I'm still waiting to hear from our insurance because they messed up the approval for PEX. I am not too upset because in the end it was good timing for us. But ds is younger and I understand your frustration, especially since you have a 12th grader! Hope things work out.

Would you mind sharing the dosage for the Augmentin/Zithromax combo? (please include weight for reference!) DS seems to be doing not so well just on Augmentin anymore and I'm wondering would it be worth a try adding Zithromax. Thanks!

About a month ago I actually had a positive swab. Before that, when the kids were sick, I would get a bit of pain in the throat, but by the time I got to go to the doc, I always was negative. Now I've been treated for that last infection, and I've been off antibiotics a few weeks. ASO went from 250 down to 167. A couple of nights ago I felt mild pain on the right side of my throat, and have a swollen lymph node. I looked today and it's a bit red, and I can see my right tonsils (but not the left, which was the one that had pus on it last time and it was very visible). I'll try to get to the doctor tomorrow or Friday, but I have the feeling it's strep again. Even if it's negative, I'll ask them to run ASO again to see if the trend continues. Now, have any of you considered getting your own tonsils out? My husband's are already out from when he was little (but I guess that didn't help so much because he also has elevated ASO, he'll get it re-checked soon). I am thinking if I keep having problems I'll just get them out. Hopefully I will find a sympathetic surgeon. Our local ENT was very quick to agree to ds's tonsillectomy. He said, "oh, there is no question about it, if he's having problems with strep, the tonsils have to come out." Any thoughts?

I think it takes a while for antibody levels to go down, I don't think a couple of days on abxs will make a difference, but just in case get it drawn as soon as possible. Also keep in mind some people don't show increased antibodies at all.

Interesting that you brought this up. I'm taking ds to get tested this Thursday. I was going to just start the Specific Carbohydrate Diet but I figured it makes more sense to test now and figure out exactly what he may be allergic to. I think you are right in trying to remove as much stress as possible on the immune system. I have high hopes that the diet will help, especially since he always seems to have something going with his bowels.

Yes, they are pretty big but my 12yo would rather swallow that than have to taste the antibiotic! I guess it would be the equivalent of swallowing a jelly bean, if you want to give it a try!

Our insurance was covering the brand name one, but now that there is a generic they will only cover the generic. I think the difference in price is pretty significant. So I don't know about apealing or anything, but maybe they will cover the generic, or you may choose to pay out of pocket (I think is something like about $100 for generic versus $600 for brand name!)

Thank you, thank you, thank you ladies! That is exactly what I wanted to hear. So we'll see Dr. Bouboulis, and I will postpone the visit to the LLMD (just to give it time to get the bloodwork results back from Dr. Bouboulis. Cancel everything (except for Dr. Latimer). That sounds like a good, reasonable plan. I don't know what I would do without your help

Wow, you guys are still dealing with this, huh? I just got a call from the doctor... my ASO is down to 167 (from 250) I am not on antibiotics right now. Should I ask for another round? I had 6 days of Augmentin plus 20 days of Biaxin.