matis_mom

Wow, so not even Clindamycin is doing the trick??? At least they set a sample for sensitivity, maybe that will be the key to unlock this medical mystery!

Good for you! I've been meaning to try it but there are different versions and I could not make up my mind. Do you have a link or specific instructions you used?

Hi, I cannot remember who had brought this up, but during my "late night research" I run into this and thought it may be useful for someone out there... In chronic Lyme disease, the MRI exam of the brain is positive in about 10-20 % of patients. It can show some white spots (unidentified bright objects- UBO) in various areas, similar to those seen in multiple sclerosis (MS), a neurologic disease of unknown cause that has some overlapping symptoms with Lyme disease, CFS and FM, such as the numbness and tingling or paresthesias. (There are also positive MRI findings in CFS and FM patients as well.) Here is the link to the article... http://lymeinfo.wordpress.com/2009/04/22/babesia-lyme-disease-bartonella-chronic-fatigue-syndrome-fibromyalgia/

So sorry you are dealing with this. I already have my #2 under treatment, but it took me a while to see/accept that something was going on. For her, the symptoms were different than my ds, we think her main problem is Bartonella, and that brings a lot of the "head" stuff, without too many physical symptoms. I would say cognitive problems were a big red flag for me, and I kind of see that in your post. My daughter was suddenly stumpped by concepts that she had long ago mastered, like she can still "do" the Math, but somehow she cannot fully grasp the concept and that gets her frustrated. It's like she knows she should be getting this, but somehow something is not clicking? Another symptom for her was fears and anxiety, very out of character. So I am not "diagnosing" your child, but all I can say is that if you as a mom see some unexplained changes, get it checked out, and just be open minded that you may get a negative result and have to go on symptoms alone. I would say start writing down what you see so you don't draw a blank when you go to the doctor and they ask you why you are there (that always happens to me!) It so heart-wrenching to have to go through this the second time around. I have come to accept this and whatever else might come, but at some points I do wonder, when will this all end???

Peg, I just read through the whole thing (just back from vacation), I'm so sorry! I have two thoughts... 1) try to get them to do a culture with sensitivities the next time she has anything. They can actually put 'the bug' in a petri dish and see which abx will work. 2) did they ever try Bicillin shots? They are painful, but they do work! My kids are getting them once a month. If they are acting up, they might get it a little earlier, and it does seem to stop things from spiraling down. It's in intra-muscular shot, and I guess the idea is you get enough concentration to actually "kill" rather than just slow down bacteria. Keep us posted! Also, does Allie have her tonsils still? If you ever get them out, insist on a culture with sensitivities. Isabel

Hi, When my ds starting Lyme treatment two years ago, they did prescribe a drug called "Welchol", I'm not sure if it's the same your son was given, but it was supposed to soak up toxins (although the traditional use was also a cholesterol-lowering drug). They had him on that for months, and I don't think it made much of a difference, but it did not hurt him either. My point is just this: yes, it makes sense, and it's probably very safe if you are only doing it for 10 days.

For probiotics, VSL3 DS packets are a prescription only probiotic, so our insurance covers them. Each packet has 900 billion organisms and they come in a box of 20 packets. Our M.D. wrote for 1 packet/day and insurance would only pay for 1 box at a time. We got the doc to write for 2 packets/day and now we get 3 boxes per month. If it works for you and insurance covers it, it's the best price for the potency. I don't believe that they are a human derived probiotic strain like the Pharmax/Genestra products and Theralac though. I like the human derived ones the best, but they are so very expensive. Wow, I have to inquire about this probiotic. That alone has been really throwing our budget way off, but what can we do... Maybe if we could get at least some of the probiotics covered, that would really help. But I can't complain too much because our insurance has been so good, thank God! But just to add to the list of hints, shop around for supplements. Sometimes you can save 30 to 40%. Also, be honest with your doctor as to where you are standing financially so he/she can help you determine which are the priorities. It's so hard on top of the stress of dealing with sick kids to have to stress out about $$$

I think it's wonderful that you are doing this for your daugthers! PANDAS did not hit my daughter until last year (she is in fifth grade now), and I can see her struggling with things she had already mastered. But then when she has a good day, she is back to normal like nothing happened. But I wonder will I ever have to go back and revisit all the "bad days" we've had this year...

Hi there! You are not crazy My take is: do what works! My ds is on 3 (yes, three) different abxs for Lyme and co-infections, and still struggling with PANDAS symptoms. We just went to see a natural practitioner who muscle-tested him and all three abxs put together do not make him strong against whatever he is fighting (supposedly, Babesia and Rocky-Mountain Spotted Fever). She added "Thieves Oil" to it, and then it tested strong. So, we are going to be adding that. My suggestion would be to find a good naturopath to help you decide, there are so many natural options out there, and it can be hard to figure out which one and how much to take. The usual dose for Thieves Oil is 1 to 2 drops daily, she tested him and he needs 10 drops daily, which I never would have done without testing. We are very blessed to have someone we can trust who is a Christian and is always putting God into all she does (I'm just saying, be careful where you go, there is a lot of New Age stuff out there). Pray that God will show you what to do.

So sorry things are bad. An easy way to look for yeast is to simply look at her tongue, a white covering indicates candida. If you can't get probiotics in, how about kefir? It's actually pretty yummy, and I bet you could even add probiotic powder to it to boost it up. Why are you thinking yeast?

All I can say is that this is my third PANDAS winter... I know it's no consolation but every fall and winter I read the forum and see kids back-sliding because of the flu, a cold, strep. My son did back slide starting in Jan with a stomach flu, then his siblings got strep, and we are still trying to clear it out of the house. I remember last year, and the year before, every winter it's something (for us, usually flu and strep together). But, as the weather improves, things seems to settle back down. We did steroids and the first taper worked wonders. Now we have a Lyme diagnosis so in retrospect, it was not such a good thing, but if Lyme is not a concern for your child, could you try steroids? How about Advil? It seems besides taking care of the infection, reducing inflamation is key in getting things under control.

Well, that supports my own theory! Both my dh and I are kind of stuck around 250 no matter what. He had confirmed Lyme 2 1/2 years ago, for which they only gave him 3 weeks of abxs. I had all the symptoms shortly after, but did not connect the dots (nor did my doc connect the dots), so I went untreated. Never got a positive, but have been dealing with one thing after the other after that.

Melanie, So your child is taking Cipro? It would give me some reassurance to hear of others who are safely taking it. My PANDAS son took it after tonsillectomy, but it was only for 5 dyas. If you wouldn't mind sharing dosage/duration please? I am scared to death of some kind of super-bug living in my son's tonsils, and I'm also scared to death of the possible side-effects.

Well, I guess I'll be calling the pediatrician in the morning... this is what I found on Cipro... Fluoroquinolones are not licensed by the U.S. FDA for use in children due to the risk of fatalities as well as permanent injury to the musculoskeletal system, with two exceptions. Ciprofloxacin is being licensed for the treatment of complicated urinary tract infections and pyelonephritis due to Escherichia coli, and inhalational anthrax (postexposure), and levofloxacin was recently licensed for the treatment of inhalational anthrax (postexposure). However, the fluoroquinolones are licensed to treat lower respiratory infections in children with cystic fibrosis in the UK. Within the studies submitted in response to a Pediatric Written Request (ciprofloxacin, circa 2004), the rate of atrophy was reported to be 9.3%.[61] Within the BPCA Pediatric Studies Summary for ciprofloxacin,[61] it was stated that the overall incidence of adverse events at six weeks was 41%. This would be consistent with the safety profile found with the other fluoroquinolones studied in the pediatric population. As such, the current ban on the use of the fluoroquinolones in the pediatric population is both reasonable and supported by various clinical studies. The most recent long term study, BAY 0 9867 Cipro Pediatric Use Study (QUIP), which followed pediatric patients from 1999–2008,[62] supports the current expert opinion that the risk of permanent injury continues to outweigh the potential benefits of ciprofloxacin therapy in the pediatric population. Within the United States, the FDA has stated it is their intention to pursue the licensing of the fluoroquinolones for pediatric use in spite of the evidence presented at that 62 Meeting of the Anti-Infective Drugs Advisory Committee that the fluoroquinolones cause irreversible joint damage in the pediatric population.[63]

Well, thanks for the warning! Ds has been moody lately, I would even say depressed. So, of course, I'm always watching out for any sign of PANDAS (he is NOT my PANDAS child -please God, not him too! ) and making sure everyone is strep-free. Now I won't know which is which is he starts getting all anxious and clingy!

Same thing here... we also have a PANDAS diagnosis for ds, and for dd we have no positive labs, just going on symptoms, so I don't know how helpful it would be (I'm thinking our story will probably sound more like a crazy mother making up stuff!!! LOL!!!) Now, seriously, I'd be happy to share, at least ds's part, since after over a year of treating PANDAS and before moving to plasmapheresis, we finally got 4 bands positive through LABCORP, and we decided to jump ship and pursue Lyme/Co-infection treatment. Let me know if you have any guidelines to follow, and I'll try to start writing something... Thanks! What town & state are you in? We are in Warrenton, Fauquier County, Virginia. Lots of people with Lyme around here, although most docs are still in denial! Also lots of PANDAS in our small little town (I know of at least 7 confirmed PANDAS cases just within the homeschool community!) It's unbelievable. Strep is always around, I am convinced it's because Lyme is so prevalent and under-diagnosed. Don't get me started!!!

So my 7yo ds and my 8yo dd had Scarlet Fever last Monday. Positive on the swab, started Cefprozil (pediatrician thought it would be better than Amoxicillin). After a week on that, my son is still not feeling well. So I took him back in today, and one side of his throat still looks red, and there is a swollen lymph node on that side. Rapid is negative, but they sent for culture. The pediatrician gave him Cipro, 250mg twice daily. Now, I'm all for erradicating this thing, but I am a bit concerned about he possible side-effects of Cipro. Incidentally, I was on it not that long ago for pseudomonas, which tested resistant to most abxs. This was in my tonsils, so it's not unlikely that my son would have it too, but again, when I read about tendon damage and the possibility of C. Difficile, well, does my 7yo really need it, or could we try something else??? Thanks!

My 13yo is only 80lbs and has been on Augmentin XR twice daily for over a year. Recently, we have also added Zithromax to the equation. So I'd say weight-wise you are fine (unless of course there is something else in the mix)

Same thing here... we also have a PANDAS diagnosis for ds, and for dd we have no positive labs, just going on symptoms, so I don't know how helpful it would be (I'm thinking our story will probably sound more like a crazy mother making up stuff!!! LOL!!!) Now, seriously, I'd be happy to share, at least ds's part, since after over a year of treating PANDAS and before moving to plasmapheresis, we finally got 4 bands positive through LABCORP, and we decided to jump ship and pursue Lyme/Co-infection treatment. Let me know if you have any guidelines to follow, and I'll try to start writing something...

The motherload, I tell you! Oddly enough, my first born is fine, it's my second that has PANDAS, but I bet I was pregnant with him when some of my fillings had to be taken out and redone... yikes! (no, it was not properly done! ) I still have some to do, but I'm concerned about the cost... We are having to replace our water treatment system, and that's going to take a big chunk of change. But I know I need to do the teeth. Can someone give me a very ball-park idea of how much we are talking about here??? Is it $1K, 5K, 10K??? Pixiesmmommy, so sorry for all you are dealing with! It's amazing how it's all inter-related, to the point where you are running around in circles and don't know what to deal with first!!! We knew have suspected water issues for a while, and finally we are doing something about it, but it seems it's always something else, something more that needs to be done. We've been dealing with this for two years now, and it's become our "new normal"... I don't even visualize that day when this is all behind us any more. I'm just dealing with things as they come, and ready to keep doing this for as long as it takes.

Thanks for that posting... I'm slowly starting to resign myself to the fact that we are NOT going to be going to Italy for a while... May as well enjoy the trip! Holland can be beautiful

I would be very interested in checking that out - thanks! Sounds really good and lots of sunshine :-). If nothing else I know some cancer patients who would be interested! Here is a link www.gerson.org I will PM you more specifics, but I thought of it because many of the things they do for cancer, I've heard of being done for Lyme patients too (coffee enemas, vitamin infusions, etc)

Thanks for posting this info. We kind of put off any further, more aggressive PANDAS treatment until we deal with the Lyme. I was in the back of my mind hoping once Lyme and co-infections are gone, PANDAS will be gone too. So I am thankful for your post, to make me see that even Dr. J is saying both things can be treated concurrently. It open a little door back there... I am not sure I am expressing this correctly, but bottom line is, thanks for sharing I hope you continue to see improvement, and that every gain "sticks" for good!

I have a very dear friend who has stage 4 cancer and decided to go natural (after one round of chemo, she felt the treatment was going to kill her sooner than the disease!) She and her wonderful family put all into trying to follow the Gerson protocol. Last month she travelled to Mexico where they have a clinic and they do all the cooking, detoxing, infusions, etc. My friend and her husband where very please with the whole experience. I don't know what your relative's situation is, but maybe this is an alternative? I can get more specific info if you need it.

Hi there, I kept saying DD!!, meant DS4..anyways, the LLMD said it sounds like he has Bartonella as well (no talk of self harm though and no cough that I thought were always present with Bartonella) But I thought the treatment was the same. He's on Azithro and Omnicef. Is it usually a different antibiotic for that? Does your daughter also have Lyme? What state are you in? So, your daughter presented mostly with neuro/psych symptoms? thanks. darlene My daughter presented mostly with irrational fears, cognitive inability (only with Math, strange... concepts she had already mastered brought her to tears... she could still "do it" but somehow could not completely "grasp it", hard to describe), very emotional, and at times kind of regressed (as in, she is 10 and was acting more like a 5 or 6yo!) We think she has Lyme too, but all her bloodwork is absolutely normal, we are only going by symptoms. She did Augmentin, Bicillin shots, then she did Augmentin/Rifampin-Zithromax combo, now we are on Augmentin+Zithromax daily plus going after parasites... The only physical symptoms for her are tiredness, and she had a few episodes of headaches (very distinct, sharp pain behind the eye), and a bit of foot pain. I took her to a natural practitioner I trust just to confirm we are headed in the right direction and she confirmed through muscle testing, it's Bartonella, but she only testing weak for in in the nervous system. Sounds wacko, I know, but it works. She adjusted her for that and we have 5 awesome days with NO symptoms... alas it did not hold, but hopefully she will continue to make progress. I'm in VA