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Hi,

 

Someone had suggested to include my post below from the PANDAS board over here on also. Tomorrow we're visiting our family doctor to look into the possiblity of Lyme's Disease. Later this week/next week we'll be looking into abx to treat son's tics. I undertand it's a good idea to do a throat swab and IGENIX test kit before starting abx for either of these two possiblities. If our son does have LD, I'm hoping we could be connected with a LLMD.

 

My rambles are below - if anyone feels like they have good connections/advice/re-direction for me, please do share!

 

Thank you,

 

Jennifer

 

----------------

 

Hi,

 

Someone had written on another post that they wished that people would update their posts so they could hear about how things have progressed. So, I will write a little and ask some more questions as I forever dig and research for more answers.

 

We had a great few months in Feb/March (still had tics each day, but weren't intense and were barely noticeable), but since mid March, our son's tics were consistent and some new vocal ones cropped up - humming, chomping. We're seeing a neurologist who approaches PANDAS with skepticism and measure reserve, yet he is willing to do a course of abx and see what happens. So now we're going to see when we will be able to start that. Anything we should know or ask about before we start?

 

Ok. Now my question is which abx? How is it decided? Do you take a stab in the dark? All blood tests are normal, mri normal etc. And should it just be abx or should it be steroids at same time? I need to ask him questions on how he sees the protocol going - but I want advice from those who have been here before. Tell me again the basics of what is to be done, what to ask about, what to watch for, to supplement with probiotics or not etc. - or please link me to where this information has already been written many times over.

 

I'm also curious if our son has LD and will be getting him tested. I've only now recalled he had a funky bite (bullseye) after a camping weekend almost a year ago. A month later he began losing weight, having fatigue, and I noticed some of his joint/body movements were getting a little odd. I'm curious. It was that month he had the flu, cold (& possible ear infection) - which I was afraid was turning into a chest cold after 3 weeks and the doc put him on abx - Amoxi. It was about 2 weeks after that our son started severe head nods - looked more like bowing or rocking out and other tics ensued from there.

 

I know this is really basic stuff I'm trying to figure out, but can anyone tell me if I've got this right between PANDAS and LD?

 

-they are both bacteria based - PANDAS intitially

-LD bacteria itself attacks the body on many levels - joints, muscles, nervous system, neurologically etc.

-PANDAS - after the antibodies attack the bacteria, they also begin to attack an area of the brain (BG / anti-

neurons)causing tics and OCD behaviours

-LD - you are treating the bacteria & PANDAS you are trying to control/decrease anti-neural activity?

-life cycle/reproduction of LD bacteria is said to be 4 weeks, as far as I have observed - PANDAS waxes and wanes

in bursts depending on triggers - diet, allergies,environment, stress/anxiety etc.

 

Am I on the right road? So it's not all that exciting of an update. Our son is still has tics, they haven't gone away, he's doing well in school and still seems to be a well adjusted kid, and we might be trying abx soon.

 

That's all from here for now, comments and suggestions and re-directions welcome!

 

Jen

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Jen,

There are no easy answers to your good questions. But here's a few comments:

1. You don't need to be off of abx to do the Igenex basic panel. Just for some of the other panels.

 

2. Some people actually do an "abx challenge" for a few weeks before Igenex testing, to see if initial treatment with abx helps the body produce more antibodies that will show up in the test. So start the abx when you can. No need to wait until after testing (assuming you're testing the basic panel).

 

3. Which abx is very individual. Lyme is generally treated with multiple abx. You can do a trial of just about anything and if it doesn't work, you can't say that no abx will work, just not that one. For instance, my son was on zith and then augmentin for Pandas. But when we suspected lyme, he went on both for a month. We saw no change. But when our LLMD added bactrim - HUGE improvement - for awhile. Other kids respond really well to a zith+augmentin combo. My son recently switched to omnicef and it produced a big herx (8 week return of tics). So there's no single answer.

 

4. If there is a bacterial infection - lyme or something else, you could actually see things get worse, in a herxheimer reaction. So when you get Igenex results back, and if you decide to pursue lyme, definitely start with an LLMD. It is too complex to ask a general practitioner to manage.

 

5. For many people, lyme is as you describe it - bacteria directly causing problems. For some people, and some kids who may have co-morbid Pandas, we think the lyme may trigger the same auto-immune response that pandas does, and that it too may lead to the production of auto-antibodies. A few of us are seeing "Pandas"/Pitands episodes from treating the lyme and co-infections. Managing detox and inflammation seems to be especially critical for these kids. Prednisone helped my son immensely, but it is not recommended if there's lyme. So I'd hold off on that until you know which path you may be following.

 

6. For the life cycle, yes, lyme is said to have a 4 week life cycle. But if you also have other infections, or if inflammation is at play, then that cycle can be hard to see. I used to dismiss lyme because we didn't have a 4 week cycle, but Ds also had bartonella, which has a 3 day cycle. And he struggles with pitands reactions that can take weeks to subside. So it can all blur and not be nice and neat.

 

You can contact ILADS.org for referrals of LLMDs in your area. Or you can post your regional area and maybe some here can offer suggestions. The waiting list is often 4-6-12 weeks for an appt. so you may want to make one now. You can cancel if the testing all comes back negative.

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  • 2 weeks later...

Thank you for your post and information. From what you shared, it looks like taking abx isn't a concern with regards to LD testing. We're kind of in a funky space of waiting and figuring out what to do for our son. I'm doubtful we're going to be in touch with any doctors or specialists who are literate about LD or have any understanding of PANDAS. However, if anyone knows of anyone who we can contact in Ontario, Canada before July we would welcome the connection - then we'll be moving around a lot and it will be awhile before we settle. Thank you for the information and connections, I really appreciate and will be following up with it.*ILADS/CanLyme wrote back within minutes of making a query....wow, that was fast!

 

My question for the day is - Where do we start?

1. Both neurologist and family doctor "doubt" he has LD but both admit they aren't too familiar with LD. Our sons test results will be back in 3 days. This test has not be known to produce positive results, if however it does, then family doctor says she will have him do the Western Blot test. If abx isn't going to influence any of the testing, maybe we should go ahead and start treating for PANDAS?

 

2. The neurologist is willing to try abx for our son for PANDAS. His approach to PANDAS is measured reserved and is skeptical - nevertheless, he is willing. What do I need to be aware of and advocate for? What are the important questions I need to be asking? Side effects or signs I need to watch for?

 

Thank you!

Edited by peacebstill
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Go to the Canlyme.com website and look under the world wide support finder. A volunteer will contact you with info on LLMDs in your area, where to purchase antibiotics etc. There are no doctors that are allowed to treat lyme with extended antibiotic protocols in Canada. I think the closest one to Ottawa is in the Plattsburg, NY area. I am living in the Niagara region of Ontario and we see a LLMD in Buffalo. My dd9 had a single circular rash in the fall of 09 and began ticcing shortly after that. She didn't develop any other symptoms that I associated with Lyme until Jan 2011 - muscle pain, bone pain, fatigue, night sweats, cyclical bowel issues etc. With a round of penicillin V for a strep infection all symptoms disappeared and the tics greatly resolved. Everything returned full force once the antibiotics were finished. Our family doctor wanted to treat with anti-anxiety and tic meds, the allergist wanted a full elimination diet, while the pediatrician is investigating autoimmune bowel disorders. The pediatric psychologist diagnosed PANDAS. None of them is willing to help us by writing requisitions for testing in Ontario. The LLMD is treating for Lyme and bartonella while awaiting the Igenex tests. The LLMD will know which tests to order depending on your son's presenting symptoms. This is our first round of antibiotics for lyme/bartonella. We saw improvement in all symptoms (including motor tics) except fatigue with biaxin, but are now seeing a herx reaction (a temporary increase in symptom intensity, in dd's case increased headaches, ticcing and fatigue) with the addition of bactrim.

Edited by rowingmom
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Thank you for sharing. I PM'd a note to you as well. I hope you will keep us posted with how the treatments go.

 

I'm encouraged to go ahead and take the neurologist up with his offer to give abx for PANDAS since it can be difficult to abx prescribed for LD. So whether PANDAS or LD or both, abx might or might not have an effect and this will be interesting to see. I'm looking into both conventional and alternative/natural treatments for LD as well.

 

I'm starting to have a hunch that LD has been the cause of PANDAS for our son -am I erring in making that assumption? Anyone who sees this stuff plainly you are very welcome to chime in!

 

Thank you!

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June 18, 2011 - an update (I like your numbering system LLM and am following suit, thanks!)

 

1. Neurologist report - our son does not have PANDAS and he declined to treat w/abx - maybe he's right - maybe it's PITAND :) or LD or something else, is it ever "just tics?" I have my hunches. Neurologist boiled it down to our son just has tics and he believes they will go away by puberty...Would it be more correct to line up with PITAND moreso thoan PANDAS? Actually, I'm wondering if LD caused the initial infection which led to PITAND/PANDAS.

 

2. Pediatrician is willing to try abx just to see what happens, will start on Monday, 10 day course, have follow up appt a monh later. Also did strep test. I'm curious to see if there is any reaction to abx whether it's nothing, easing of tics, or herxing. If herxing, I would be curious if it is related to die off with LD?

 

Last year when we gave our son abx (after having the flu, bad colds that lasted for weeks etc., it was 10 days later he started having tics. I'm curious if his excessive/huge head nodding at that time might have been related to LD? Herxing? Only curious......

 

3. Canadian Lyme Test came back negative...would like to do test offered by IGenix...but meanwhile, stepping in right directions to help our sons body be healthy, rested, supplemented etc.

 

That's all for now, always searching for connections and footsteps from those who have been here before.....

 

Jennifer

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Jen,

There are no easy answers to your good questions. But here's a few comments:

1. You don't need to be off of abx to do the Igenex basic panel. Just for some of the other panels.

 

2. Some people actually do an "abx challenge" for a few weeks before Igenex testing, to see if initial treatment with abx helps the body produce more antibodies that will show up in the test. So start the abx when you can. No need to wait until after testing (assuming you're testing the basic panel).

 

3. Which abx is very individual. Lyme is generally treated with multiple abx. You can do a trial of just about anything and if it doesn't work, you can't say that no abx will work, just not that one. For instance, my son was on zith and then augmentin for Pandas. But when we suspected lyme, he went on both for a month. We saw no change. But when our LLMD added bactrim - HUGE improvement - for awhile. Other kids respond really well to a zith+augmentin combo. My son recently switched to omnicef and it produced a big herx (8 week return of tics). So there's no single answer.

 

4. If there is a bacterial infection - lyme or something else, you could actually see things get worse, in a herxheimer reaction. So when you get Igenex results back, and if you decide to pursue lyme, definitely start with an LLMD. It is too complex to ask a general practitioner to manage.

 

5. For many people, lyme is as you describe it - bacteria directly causing problems. For some people, and some kids who may have co-morbid Pandas, we think the lyme may trigger the same auto-immune response that pandas does, and that it too may lead to the production of auto-antibodies. A few of us are seeing "Pandas"/Pitands episodes from treating the lyme and co-infections. Managing detox and inflammation seems to be especially critical for these kids. Prednisone helped my son immensely, but it is not recommended if there's lyme. So I'd hold off on that until you know which path you may be following.

 

6. For the life cycle, yes, lyme is said to have a 4 week life cycle. But if you also have other infections, or if inflammation is at play, then that cycle can be hard to see. I used to dismiss lyme because we didn't have a 4 week cycle, but Ds also had bartonella, which has a 3 day cycle. And he struggles with pitands reactions that can take weeks to subside. So it can all blur and not be nice and neat.

 

You can contact ILADS.org for referrals of LLMDs in your area. Or you can post your regional area and maybe some here can offer suggestions. The waiting list is often 4-6-12 weeks for an appt. so you may want to make one now. You can cancel if the testing all comes back negative.

This is all great advice. We never noticed when the symptoms occurred -so I agree that it really can vary from person to person depending on the bugload they have. We rushed into testing the whole family with igenex when my first child got lyme. I wanted to know if anyone else had it but now I wish I had waited u til after doing a challenge w either antibiotics or herbs. We saw evidence of Lyme exposure with the igenex testing but it was very borderline and I have wondered what it would have been after a challenge. There is no doubt we had lyme (or some bug that responds to Lyme/babesia/bartonella treatment :-) sobthat is the most important thing. That's all that matters-if the treatment works. I agree that you need to see a llmd to rule out Lyme. It's rare that a regular doctor or infectious disease doctor has the experience to diagnose and treat Lyme properly.

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I don't think it is ever "just tics". I really don't think it makes much sense to say that. When doctors are saying that, perhaps what they mean is, "I have no idea why the patient has tics, but it is nothing that will progress into anything else." I would ask, if the doctor has no idea what is causing it, how could they conclude it will not progress into more?

 

That said, I do hear there are kids who develop tics that do go away as they mature, so I am sure that can happen. I imagine in a number of these cases, it is something structural going on related to bone growth, perhaps causing nerves to be pinched which cause the tics.

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I'm also in Ontario - Southwestern Ontario. As rowingmom said there are no docs in Canada who are treating lyme (at least publicly). We saw the last LLMD in Canada a few months ago, but he had already given up treating lyme after being investigated by the college of physicians. We are going to an LLMD in Ohio in 3 weeks. I hope you got some good LLMD suggestions from CanLyme.

 

We've been down a similar road to rowingmom - after much research we began to suspect PANDAS. A positive strep test led to 10 days of penicillin. On day 4 of penicillin DS7 woke up literally a different child. It was an amazing overnight transformation from our OCD/ODD/mood-disorder child to a happy, normal little boy. Unfortunately 24 hours after the abx ended he went right back to miserable. So we tried again and the same thing happened. Then we got aggressive with abx, with help from a U.S. PANDAS doc, and instead of getting better DS got way WAY worse. His joints started swelling, he was raging daily, his arms were buzzing and shocking him, he got rashes and fevers, etc. Our pedi ordered a WB here in Ontario and it was negative. At the same time I sent my blood to IGeneX, suspecting congenital lyme because he's been ill since birth. My blood came back both IGeneX and CDC positive for lyme. Ugh. After wasting months waiting to see the LLMD in Toronto, who is no longer an LLMD, we are finally going to Ohio in a few short weeks. Can't wait to finally get on the path to healing.

 

I would suggest getting to an LLMD in the U.S. as soon as possible. We have spent 4.5 years waiting months at a time to see one specialist after another. We've been to so many doctors, even to types of doctors I didn't know existed. They all agree that something is wrong, but have no idea what, so they refer him to another specialist and we wait months to get in, so we can do it all again. I wish I had known about lyme years ago and could have avoided all this waste. The only good thing about it, is that we have ruled out just about everything under the sun, which gives me more confidence in pursuing lyme.

 

Good luck, and feel free to PM me anytime!

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  • 3 weeks later...

Hi All,

 

Thank you for all of your posts and PM's! We've been away for awhile but I wanted to take a moment to update.

 

Our son did a 10 day course of abx. While on it, new tics and an increase in old tics was noticeable. It's been 2 days since he's finished the course and it seems as though the tics are calming - not gone - but slowing down a bit (still a lot of stuff going on). So now we continue to observe and we'll have a follow up with the pediatrician in a couple of weeks.

 

Question: To get IGENIX testing done - do you send away for a kit or is it possible to get one from a doctor or naturopath? I looked at one of the lab test forms and there seemed to be a lot of options to check off - what do you do when checking for anything relating to Lyme?

 

I have posts and PM's to catch up once vacation is finished, thank you for taking the time to share info and helping to connect more dots.

 

 

Thank you,

 

Jennifer

Edited by peacebstill
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You can order the test kit yourself, but I think you have to find a dr/naturopath willing to accept the results. You should test for the common co-infections because lyme is not usually found without one. The LLMDs will also want to test other parameters (i.e. CD57, inverted vit D) that can be indicative of infection even without a positive result. Our LLMD wrote the test requisitions that were mailed with the test - I thought of doing it myself, but figured since I would have to work with a LLMD anyway, why not let them choose the tests, and not have to run more later to get the required info.

 

DD9 has tested positive for bartonella and indeterminate for lyme (IgG indeterminate bands 34, 39, 2+ band 41) through Igenex. Her CD57 Nk absolute count is 18 (normal > 98), her CD57 %lympho is 0.80 (normal >4.65). Her WBC is 5.2 (ref 4.5 – 13.5), a little low. She had an allergic reaction to bactrim and will be starting rifampin shortly. We began with biaxin (for lyme) for one week before starting the bactrim (for bart). She showed an increase in symptoms on biaxin/bactrim, but these have eased since having to stop the bactrim and start antihistamines. I imagine they will start up again on the rifampin.

 

Glad to hear your son's tics are decreasing, although they may have been a herx reaction. Life is more fun when they are not suffering.

Edited by rowingmom
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