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Need treatment advice......


Dedee
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Most of you are familiar with my daughter’s situation. She had an acute onset 15 months ago after a flu mist. She is fighting Mycoplasma and has been on antibiotics for nine months, had 2 HD IVIG’s last summer, and one round of IV antibiotics (two weeks ago). Also we recently started her on Lamictal which is currently up to 50mg per day. We saw great improvement after the IVIG’s but then regression again after a viral infection. Things have gradually gone downhill this winter and we can’t seem to get back on a road to recovery. Her Myco p. titers are still elevated which is what prompted the round of IV antibiotics a few weeks ago. We have seen mild improvement with that but nothing huge. The Lamictal seems to be helping some and I have a call in to the doctor to see if we should discuss increasing the dose.

 

My question (and my suspicion), is whether she may also have Lyme. We have tested her for many other infections, but not lyme or its co-infections. Then integrative medicine doctor that we see said she would do it but wanted to see how she did on this last protocol we tried because it is also used to treat lyme. It was the combination of IV Clindamycin for 5 days with pre and post oral minocycline. Again, we saw some improvement but nothing huge. Don’t think we are herxing……we were / are being very pro-active in preventing a herx or yeast. The antibiotics we have used in the past are Zithromax for six weeks but saw little results. Then went to Biaxin and got great results but when she started to regress they switched to Erythromycin which she was on for little over a month before we decided to try the Minocycline / Clindamycin IV protocol. She also still takes Zith 3 days a week to prevent any strep exposures. Her strep titers were slightly elevated at one time, but back to normal now. The supplements she is on are: Fish oil, NAC, Vit C, ALA, Vit D3, Probiotics.

 

We have an appointment to see Dr. B. in late March but I’m not sure that is who we need to see if this is a Lyme issue. I am also taking my son when we go see Dr. B (if we keep the appointment), because we are also having so much trouble with his OCD also. He has been positive for myco p also but after about 6 months of antibiotics his titers returned to normal. Problem is, that his symptoms (OCD, anxiety), have never gone away. I’m just at my wits end……we don’t have any good LLMD’s in this area. I have to work really hard on my husband and convince him that this is really a necessary appointment because of the expense and time. We will have to take several days off work and drive about 13 hours (with 3 PANS kids) to get to Dr. B. If I end up still needing another doctor after that……well, that is going to be a hard sell if you know what I mean. We spent 3 weeks in Florida last summer at the Rothman Center doing CBT (an awesome program) and we have seen Dr. M several times. That’s a long trip as well. So, I guess you understand my concern over where I need to turn next.

 

I am desperate for advice / opinions. Life is very overwhelming right now…….

 

Dedee

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DeeDee --

 

I know zilch about Lyme, but I just wanted to drop a note with cyber-hugs and support . . . sorry your DD is still in a tough spot!

 

I'm sure someone more Lyme-literate will chime in here soon . . . if not, LLM would probably be a great resource for you, so you could PM her, maybe. She's been through much of the same stuff with her DS and DD, both.

 

Any chance there's a DAN! doc or an integrative physician in your area who would be open to Lyme and/or other co-infections and treatment? I know some would say . . . sort of like "there's no substitute for a PANDAS doc," that there's also no substitute for an LLMD, but I also know some others have had success with one of those two routes, as well.

 

Hugs and all the best!

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Dedee-

 

I am just going to throw this out there-

 

I did not have luck with the lyme route for my kids, and now consider it to have been a "distraction" from our real issue. (I know you will get many posts to the contrary, and I am probably the sole parent who will post this, but that is why I post it).

 

However, for my girls, antibiotics have not been the silver bullet either. From a mom's eye, they clear infection well, however ANY immune challenge brings on autoimmunity and inflammation, and we only get relief from symptoms with immune mediating treatments: for us this has been oral steroids, iv steroids and pex. These treatments work miracles in our house, until the next infection.

 

So- I guess my only suggestion is to look at your kids, have they had very positive response to ivig or steroids. If so, what happened after that. If it was infection that triggered a downfall, maybe they need something to shut down the autoimmunity.

 

That is all I can offer- but whatever you do, I would say follow your instinct! I know Dr B works closely with Dr Jones (llmd), and will do lots of the same preliminary bloodwork, and if he thinks there is lyme, will get you on a "Jones- esque" treatment, so I think that will be a fruitful first stop, whatever path you travel.

 

Sorry things have been so hard :(

 

Eileen

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Ha! I knew my ears were ringing for a reason!

DeeDee, I wish I could just type "test for lyme" and it would be as simple as that. If it were, I wouldn't still be here. So this isn't going to be a black and white answer.

 

I do think it's worth testing for lyme and co-infections. There's always been something about your story that struck me that way. I do tend to have more confidence in Igenex for lyme than other members do, but I realize it's a good chunk of change. If your daughter could be off of abx for a month, I'd look into the new lyme test that actually cultures lyme spirochetes, but 1. it's about $500? and 2., if you're DD is now able to swallow pills, I'm not sure I'd risk letting her slip back to a place where she can't swallow again. But that's something only you can decide. If not the new test, then I'd personally consider Igenex for lyme. But if funds are limited, I'd skip their test for co-infections and put that money toward a visit with an LLMD - they can often use other labs for co-infections (like Specialty Labs/Quest for bartonella) that take insurance. Not bashing Igenex, but $600+ can go toward other things, at least in my limited budget.

 

I don't know that a few weeks of IV abx is enough for myco and/or lyme. That doesn't match what I've heard from others, but it's also not my expertise. Sometimes abx that work for some people don't work for others. Some people have lyme in cyst form or hiding in biofilms and that makes it harder to treat. If both kids have issues with it, you also have to deal with the possibility they're passing it back and forth.

 

As for which doctor to see...we've seen several Pandas docs and they each helped us get to a certain point. We're now solely with an LLMD because in addressing the lyme stuff (along with vitamin/mineral issues, methylation), we're also doing what we'd be doing for Pandas (and then some). Given the event planning and the number of kids who may need treatment, when I faced this crossroad, I went with an LLMD - it just made financial and logistical sense for us. We're fortunate to have someone we really like who's only 30 min away. I'd tell you to see him, but it would be even further than Dr B. I know of one LLMD I'd take my kids to in the DC area and there may be some closer to you. You can go to www.lymenet.org to their "find a doctor" discussion and get referrals from people in your area. If you do the lyme path or integrative path, having someone less than 10 hrs away will be a big help.

 

You're welcome to PM me if you want to talk offline. I'll mention that ALA has at times been good for my kids but it can also chelate mercury, so if a chronic illness has caused the body to not detox metals properly, it can introduce it's own set of issues. I still have some in the cabinet and will probably use it again, but not right now. Omega 3s are generally regarded as a great supplement for inflammation. However, my kids have a zinc/B6 deficiency called pyroluria and that makes Omega 3s not so great for them because pyroluria causes an Omega 6 shortage and Omega 3s and 6s compete for the same binding sites. So adding 3s just makes the Omega 6 deficiency worse. For my kids, Omega 3s makes things worse. We use primrose oil (omega 6) instead. But it's all very individual. NAC made my daughter very drama-queen and high anxiety. NAC is a mucus thinner. Biofilms are mucus-y. So *if* biofilms were an issue for your DD, the NAC could be dissolving the films and releasing more bacteria. Not saying this is at all the case or you should stop it if you think it's helping. My point on all the supplements is that no supplement is "good" or "bad" for everyone. But some are bad and some are good for YOU. So it's really worth seeing (IMO) an integrative doctor who looks at the head-to-toe picture and has a good handle on treating not just infections but also on supporting the body's many needs.

 

Some kids get Pandas, get abx and/or IVIG and make full recoveries. My comments aren't meant for those kids. It's more for the ones who, like my kids, have underlying deficiencies that no tonnage of abx was going to fix. It's taking a much more concerted effort on several fronts...but they are getting better and for us, this path has gotten us the furthest.

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dcmom---I was going to say similar to what you said, but since you said it first, maybe I won't have to dodge the rotten tomatoes :P

 

I am NOT a Lyme expert in any way, and in the back of my mind, given all the tick bites, etc. i still sometimes linger on the thought of that path.....BUT, I think IVIG not working long term shows that either IVIG is not a"cure" and may be needed repeatedly after exposures, or that there is still an underlying chronic infection/trigger. I personally, and possibly IGNORANTLY, but nonetheless based on my own research and digging, have come to thing that chasing titers on myco p is questionable. I know that if a child has mono, they will ALWAYS test positive for EBV titers. It does not, however, mean they still "have" mono and need treatment (even though mono is viral and generally isn't treated), but you get my point. I know Sue Swedo was quoted either on this forum or another saying that the teens with the tics in NY may have elevated titers for strep because it is "common" in kids. Doesn't mean that "have" strep, or even that they "caught" strep, ONLY that they were exposed enough for the immune system to mount a response.

 

I don't really know what I'm trying to say here, other than that if it would be something affordable and you could put it behind you, have the Lyme testing done, but don't make too much out of it if it's not positive...there are many bands showing up that I believe are positive for things other than Lyme.....taking people down a long course of unnecessary Lyme treatment. I know I may some day EAT MY OWN words here, so by no means am I telling you NOT to test. I have, and we may again.

 

I guess my point is that just because IVIG didn't hold, doesn't mean it's likely Lyme....

 

 

Dedee-

 

I am just going to throw this out there-

 

I did not have luck with the lyme route for my kids, and now consider it to have been a "distraction" from our real issue. (I know you will get many posts to the contrary, and I am probably the sole parent who will post this, but that is why I post it).

 

However, for my girls, antibiotics have not been the silver bullet either. From a mom's eye, they clear infection well, however ANY immune challenge brings on autoimmunity and inflammation, and we only get relief from symptoms with immune mediating treatments: for us this has been oral steroids, iv steroids and pex. These treatments work miracles in our house, until the next infection.

 

So- I guess my only suggestion is to look at your kids, have they had very positive response to ivig or steroids. If so, what happened after that. If it was infection that triggered a downfall, maybe they need something to shut down the autoimmunity.

 

That is all I can offer- but whatever you do, I would say follow your instinct! I know Dr B works closely with Dr Jones (llmd), and will do lots of the same preliminary bloodwork, and if he thinks there is lyme, will get you on a "Jones- esque" treatment, so I think that will be a fruitful first stop, whatever path you travel.

 

Sorry things have been so hard :(

 

Eileen

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Dedee-

 

I am just going to throw this out there-

 

I did not have luck with the lyme route for my kids, and now consider it to have been a "distraction" from our real issue. (I know you will get many posts to the contrary, and I am probably the sole parent who will post this, but that is why I post it).

 

However, for my girls, antibiotics have not been the silver bullet either. From a mom's eye, they clear infection well, however ANY immune challenge brings on autoimmunity and inflammation, and we only get relief from symptoms with immune mediating treatments: for us this has been oral steroids, iv steroids and pex. These treatments work miracles in our house, until the next infection.

 

So- I guess my only suggestion is to look at your kids, have they had very positive response to ivig or steroids. If so, what happened after that. If it was infection that triggered a downfall, maybe they need something to shut down the autoimmunity.

 

That is all I can offer- but whatever you do, I would say follow your instinct! I know Dr B works closely with Dr Jones (llmd), and will do lots of the same preliminary bloodwork, and if he thinks there is lyme, will get you on a "Jones- esque" treatment, so I think that will be a fruitful first stop, whatever path you travel.

 

Sorry things have been so hard :(

 

Eileen

 

Eileen,

 

You said " If it was infection that triggered a downfall, maybe they need something to shut down the autoimmunity."

 

My question is how?

I am with you on the issue of ABX et all clearing things, only until the next infection triggered response. I personally feel that the autoimmune issue/response is where the real problem may be at.

Now that is has been triggered, by whatever cause: strep, myco, etc., it seems to be in hyper drive in response to other viral or bacterial triggers.

For me, this would be the million dollar answer if someone could figure our how to shut down the over reactive immune system-close the BBB to where it should be so that it does not allow things to pass that should not!

I have researched closing the BBB and cannot find much if anything worthwhile or effective. For many, the treatments we have are simply treating the symptoms and not the root cause now that we are at this point.

 

Does anyone know how to close or heal the BBB to some degree permanently? Or how to shut down or slow down the immune response these kids have?

~something has to be better than Ibuprofen as a temporary fix.

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Hi Maggie-

 

My two girls course of pandas has followed pretty closely what has been described in what little credible literature there is, mostly by Swedo. Practically, what this means is, in between episodes my kids remain very close to 100%- however they relapse on average twice per year due to illness, some smaller relapses due to illness exposure and other immune challenges (although, knock on wood, this seems to be a bit less as time goes on). In theory, I believe that this is because they now have an autoimmune disorder, called PANDAS, PANS, (or sh$$ on toast). We have been working at aggressively treating flare ups with some success, to give them both a mostly normal life.

 

As far as the deep question of WHY, or the search for a cure, or the way to close the BBB- well, I would say that is the million dollar question, and one that (although I think I am pretty smart) I know I will not find the real answer to. Closing the blood brain barrier is a big direction for MS research as well. The medical community just does not really know why some are succeptible to autoimmunity, and for most autoimmune disorders, there is no cure- there is remission. I may be in the minority here, however, coming to acceptance of this as a long term disorder, and focusing all of my energy on management, has done well for our whole family in the past couple of years.

 

My current opinion is that steroids are underused in pandas treatment. I also think in the future, we will be able to use meds available for other autoimmune disorders in order to regulate the immune system- at least for a time. I think that the doctors that treat pandas are great- yet I do think there are therapies out there, already in use for other conditions, that are not being considered for pandas.

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I recommend doing a Western Blot Lyme test from Igenex- other Western Blots, like the one from Labcorp, leave out important bands that are Lyme only specific.

You already have a Lyme seed planted in your brain- me, it would continue to fester and clang around in the back until ruling it out for sure.

 

My dd6 did not have any lasting relief from strep pandas treatments-

but by God, she had every single Pandas symptom in the book- was clinically dx'd with it-

Azith. was a miracle drug at first- after 4 weeks, major backslide.

Tried other single only antibiotics for pandas=nothing.

Did 2 HD-IVIG's- first was a nightmare of herx, 2nd one 5 weeks later, was bliss! Calm, happy- then it all faded back to square 1 in 6 weeks when it wore off and left the body.

 

Of course, I heard of Lyme around here. I thought: no way. Too far out there, cannot be.

3 months after the last IVIG, I sent in a Labcorp Western Blot I bought off the Internet, on a whim.

Came back 1 band only, p23 positive, which is a Lyme ONLY bacteria band.

I would have been remiss if I didn't check further.

Ordered an Igenex test- had our DAN Dr. at the time sign it for me-

it came back lit up with Lyme only bacteria bands.

That is when I decided to go to an LLMD for help-

the rest is history.

 

All that to say: Why not just rule it out?

 

((hugs)) I know how hard it is for you right now- sending PV's---

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Dee Dee -

 

I would recommend keeping the appointment with Dr. B as he will likely have some other ideas about treating the PANDAS aspect and may find some infection that you had not thought to look for. I would also call his office and see if they could give you a referral to a lyme doctor while you are in connecticut. I know Dr. B often uses Dr. J but he may be booked at that very moment- but there are several lyme docs in Connecticut and perhaps you can get in with another reputable doctor while you are there. You can also post on the lyme board and ask folks to PM you with ideas.

 

I have taken my son to several different doctors and have found that each his his/her own unique way of looking at his problems.... and each offered something that helped a bit. All together he is doing much better than 11 months ago and is continuing to move forward.

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Thank you all so much for your supportive and caring responses. You guys always come through for me in the really bad times. This is one of those times (in dealing with all our kids), that I am truly at a lose of which path I should take next. I know you all understand that (at this point) I feel that I should be clear about what I want our next move to be before making or going to our next appointment. Otherwise, I risk the chance of making a very long, expensive trip and coming home with no more than we have now.

 

We had a tough week-end. My daughter's defiance and frustration intolerance is escalating. In addition, my husband's intolerance is increasing, and he isn't dealing with this well at all. I tried to have a talk with him this morning (during a moment of sanity)to try to make him understand that his responses to her behavior have a huge impact on her. It all makes me so sad. He loves her so much, but it's so hard for him to understand why she can't just control her behavior, even though he completely believes in this illness. She constantly complains of a tummy ache and he thinks she is faking and trying to get attention or trying to get out of taking her medication. I try to get him to see that when she gets worse is when her physical symptoms come back also. When she is good, she doesn't complain with her stomach.

 

Anyway, I guess we will try to keep the appointment with Dr. B. and tough it out for the next 5 weeks. I am going to talk with her doctor and see about increasing her Lamictal. That seems to be helping a little, at least short term. I just wish I understood what was causing this downward shift.....

 

Again, Thank you all for your support and guidance.

 

With Much Appreciation and Affection - Dedee

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I recommend doing a Western Blot Lyme test from Igenex- other Western Blots, like the one from Labcorp, leave out important bands that are Lyme only specific.

You already have a Lyme seed planted in your brain- me, it would continue to fester and clang around in the back until ruling it out for sure.

 

My dd6 did not have any lasting relief from strep pandas treatments-

but by God, she had every single Pandas symptom in the book- was clinically dx'd with it-

Azith. was a miracle drug at first- after 4 weeks, major backslide.

Tried other single only antibiotics for pandas=nothing.

Did 2 HD-IVIG's- first was a nightmare of herx, 2nd one 5 weeks later, was bliss! Calm, happy- then it all faded back to square 1 in 6 weeks when it wore off and left the body.

 

Of course, I heard of Lyme around here. I thought: no way. Too far out there, cannot be.

3 months after the last IVIG, I sent in a Labcorp Western Blot I bought off the Internet, on a whim.

Came back 1 band only, p23 positive, which is a Lyme ONLY bacteria band.

I would have been remiss if I didn't check further.

Ordered an Igenex test- had our DAN Dr. at the time sign it for me-

it came back lit up with Lyme only bacteria bands.

That is when I decided to go to an LLMD for help-

the rest is history.

 

All that to say: Why not just rule it out?

 

((hugs)) I know how hard it is for you right now- sending PV's---

 

Where are you now in terms of how well your ds is doing?

How are the symptoms? What did you see prior to testing that made you go further and look into Lyme?

I am interested in your story of how and why you got to this point and discovered lyme!

We are early on in treatment with ABX and I do not want to do IVIG etc if it is not going to hold or make a long term difference.

You can answer here or pm me if you feel more comfortable, but I am very interested!

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Hi Maggiesmoon- this is just MY experience, of course.

My dd6 has made some solid gains in re: to OCD- it is very mild now (has to be 'first' that is about it now)

She used to have deep OCD around clothing and intrusive thoughts. She is doing well in school.

She is not 100% we have some vocal tic issues, what I call copralalia at times, and periods of impulsivity (at home) that she can't/couldn't seem to control-

but from where we were a year ago, when we had exorcist rages and breakdowns, where I didn't know if I should call an ambulance or not,

or fear of taking her out with me, because she'd start walking the lines in the parking lot,

and then bolt from me, I'd be chasing her with cars everywhere, then forcing her into her car seat while she fought and screamed, and I was sure someone was going to call the police-

Whew- I'd say things are better!

But she is not well. She has some quite serious and nasty, hard to eradicate buried in the body, infections.

 

We were in such dire straights, yes indeed I did want IVIG. And I couldn't help but hope 1 would be a ticket to turn it all around for us.

It wasn't. Also, we just kept backsliding-

 

I had heard the parent testimonies here about finding Lyme after pandas treatment were not sustaining-

I really did think no way in the world.

I found a Labcorp western blot online for $69 without a Dr. signature required (and I am not recommending this for Lyme testing, this is just my story)

came back to me she had a positive p23, Lyme specifically bacteria only.

I was floored.

Went on to do Igenex testing. Went to a LLMD.

Here we are---

I wish you the best. All of are paths are not exactly the same. It is a hard journey.

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S&S--this is where I do a big "gulp." One of my other daughters, who I know in my heart has had pandas for years, has had chest pains (infrequently), on and off headaches, etc. for 3 years. Did Labcorp W. blot and band 23 showed up. Was told "negative." Crap. Did Igenex also show band 23? and others??

 

 

Hi Maggiesmoon- this is just MY experience, of course.

My dd6 has made some solid gains in re: to OCD- it is very mild now (has to be 'first' that is about it now)

She used to have deep OCD around clothing and intrusive thoughts. She is doing well in school.

She is not 100% we have some vocal tic issues, what I call copralalia at times, and periods of impulsivity (at home) that she can't/couldn't seem to control-

but from where we were a year ago, when we had exorcist rages and breakdowns, where I didn't know if I should call an ambulance or not,

or fear of taking her out with me, because she'd start walking the lines in the parking lot,

and then bolt from me, I'd be chasing her with cars everywhere, then forcing her into her car seat while she fought and screamed, and I was sure someone was going to call the police-

Whew- I'd say things are better!

But she is not well. She has some quite serious and nasty, hard to eradicate buried in the body, infections.

 

We were in such dire straights, yes indeed I did want IVIG. And I couldn't help but hope 1 would be a ticket to turn it all around for us.

It wasn't. Also, we just kept backsliding-

 

I had heard the parent testimonies here about finding Lyme after pandas treatment were not sustaining-

I really did think no way in the world.

I found a Labcorp western blot online for $69 without a Dr. signature required (and I am not recommending this for Lyme testing, this is just my story)

came back to me she had a positive p23, Lyme specifically bacteria only.

I was floored.

Went on to do Igenex testing. Went to a LLMD.

Here we are---

I wish you the best. All of are paths are not exactly the same. It is a hard journey.

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Hi eljomom-

I have read your feelings/reservations on Lyme- I feel a little hesitant, but will answer to the best of my ability.

I tend to be research obsessive.

When I saw the p23 positive from Labcorp, but the test was deemed negative, I really, really wanted to let it go.

I couldn't. I scoured everything I could find. What I found were 2 famous long time LLMD's had opinions on this matter.

One literally said: If you have positive p23, you are positive for Lyme.

The other LLMD, who uses different labs over the years for lyme testing, said:

Labcorp will show the p23 if you have Lyme, Igenex the 31 bands.

Obviously, this is a generalization, not a scientific fact.

And please for the love of God, if someone does a Labcorp and p23 is negative, do not think you don't have Lyme.

 

What I could not get my head around was HOW could a Lyme ONLY bacteria band show positive if there was not Lyme in the body??

So, I went on to do an Igenex test for dd, and again, multiple Lyme only bacteria bands were positive.

LLMD suggested I get tested- I had a very clear positive for bartonella, and a Lyme PCR blood test done (literally see it in the blood)

show up, positive.

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Dedee,

 

Sorry, it's early, so I've only skimmed through the responses, and really have nothing to say about Lyme - it's not an avenue we've found a reason to explore. But we are at a similar crossroads as to treatment paths, so I can empathize.

 

Our issue is chronic re-infection, 2x already in 2012, after amazing results post T&A last November. He's confounding our pediatrician as well as Dr. M's team.

 

After our next appt, March 7th, with Dr. M, we may look to add another PANDAS doc to our team, with guidance from our pediatrician. DR. M has been good for us for many reasons, not the least of which is she takes our insurance and is local, but we're at a point where we might need some new ideas!

 

I understand your frustration, and your husband's reluctance to keep adding doctors - but each case is unique, and I don't think there's an easy "one-stop" shop sort of answer for our kids.

 

Good luck, and keep us posted on how you're doing!

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