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Oh Geez....

 

We are definitely 'still' paving the way for other children who will suffer in the future. I would like to share a few things I learned from my Dr. visit last week. As you know.... none of this is written down in article so please take as tidbits of information from one Dr.'s office. AND, we all know each Dr. throughout the PANDAS and Lyme world have difference of opinions.

 

I was asking about relapsing post antibiotic treatment and if it was true that most people relapse with neuropsych symptoms. Dr. G, Dr. H's associate said they believe it is true 'no study' proving it as fact. Apparently, Lyme likes to hide on a specific cell (forgot the name) in the central nervous system and it is the vehicle for which it hitches a ride and crosses over into the brain. Lyme loves the soft tissue of the brain. They don't know if they can fully eradicate (some Dr's disagree) the bacteria and it is their job to get the bacterial load down and the immune system functioning properly enough to handle when/if it reasserts itself. Again, you can carry Lyme a symptomatically for years. Children that present with neuropsych symptoms have probably been suffering for a very long time or are congenital lyme. They see neuropsych symptoms as the only presenting symptom in children often. They do have a very, very high success rate with children and anticipate full recover for most. Our body is filled with thousands of bacteria and viruses and a few are the predominate offenders.... Lyme being one of them. Dr. H said they truly know nothing about how or why IVIG may or may not help an individual especially at high doses. He was willing to address the issue of hdIVIG with his associates at ILADS. Again, further research needs to be performed.

 

I often think about how people got their kids well 150 years ago when there were no formal studies. Basically, it was a bunch of parents sitting around a camp fire sharing anecdotal information after a lot of trail and error. Welcome to our world and shared information. I know for a fact it is the shared experience that has gotten my children better and not any one single Dr. (although very helpful). I have also learned throughout this journey that we have to trust our judgement as parents over anything a Dr. says until this is figured out. OF COURSE minus the notion of the HERX.... which makes things terribly difficult and confusing to know what is and isn't working. I can only give your our experience but as each herx passed (sometimes months of increased symptoms) and new and better child has emerged. However, the process is still rough even though I feel like a veteran of the herx. My younger non PANDAS only Lyme/Babesia/Bartonella/HHV6/Coxsackies... is suffering from a herx as we speak. I do get glimpses of a normal child and intuitively I know its helping. It is a tough, tough road and there is no easy fix to something that is so rooted in their bodies/brain. Minimally, it is a two year horizon to get your child well.

 

So, as much as I'd like to be long gone from this forum... I am still here almost two years later with 2 more children and one adult chronically sick from when I first arrived.

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Hi everyone!

 

I am coming from the other side of the coin, a bit.

 

I have two daughters diagnosed with pandas a little over two years ago. They have been a pretty classic presentation. They were both physically healthy and neurotypical, with no issues prior to onset at ages 5 and 9. They presented with an overnight onset of debilitating ocd, initially at the same time as positive strep culture (with only very minimal illness symptoms). They respond very well to pandas treatments of abx, steroids and pex, and both had about 9 mos of total remission prior to the stuff we are dealing with now.

 

They do relapse with other triggers- illnesses, loosing a tooth.

 

We have been trying to battle pandas as aggressively as possible (only limited by finances and doctor access at times). But, with all of the talk of lyme on the forum, I had trouble sleeping, so we had them tested. Both girls were IGM positive, and IGG negative. IGM was about 4 positive bands, IGG nothing (maybe 41- have to relook). Our initial ID doc (works with Dr Fallon of Columbia, ordered Igenex, not your typical ID) felt the test and symptoms indicated exposure- but not chronic lyme, and to stay the course of pandas treatment. Our pandas docs, plus a few others I consulted agreed. Went to an llmd in MD, and he wanted to treat them for chronic lyme. I felt I wanted to try, and started one on augmentin, zith, tindamax combo, and the other on zith, rifampin (allergic to penicillin). We have seen NO change- NO better, NO worse, nothing.

 

The girls did get strep, which has caused an ocd flare up, we have used steroids which have significantly calmed things down. Right now I still have them on the lyme abx, but I am struggling with giving them SO many meds that don't seem to be helping. I DO NOT want to create another problem.

 

Both of them had pex, and it was a small miracle. Both went into the hospital debilitated by ocd, one came home 80% better, and was 100% within a month, and the other was 100% when she came home. It did not last, but we were able to keep them both at 90% for a year.

 

This is why it is SO important to know what we are dealing with, yet it is very hard to figure out. I struggle and worry every day. Yet- I feel I need to follow what works. I know I cannot forsake immune modulation for lyme treatment for my kids. But- they look like pandas, and have no brain fog or physical complaints.

 

Laure- have you done the Cunningham test? My kids antineurals were all elevated. I am thinking this alone is a case for PEX (is this right?). Maybe a redo of that test would help you figure out if it is autoimmunity- in which case pex (or maybe IVIG) would make sense. When my kids have responded to pex, or to iv steroids- it has been at times when a course of oral steroids did not cut it.

 

LLM- I have always been nervous about the possible herx, flare, turning back the pages of IVIG- my kids have been in really rough shape when considering it, and I couldn't imagine dealing with a "worse".

 

In my experience, just when I think I have a real handle on stuff, it changes. AND each time they flare, or change, I feel like it is a process of reinventing the wheel to get treatment.

 

It is just so hard; hard to watch them struggle, hard to feel totally confident on a course of treatment, hard to get the treatment they need, hard, hard, hard. Gggrrr- glad I have everyone here!!!!

 

It is such a

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I've never been quite sure if the iburprofin helped or not. For us it was never clear (although I did it anyway since so many had positive reports). My dd's pupils were also never hugely dilated the way some describe (maybe a little, but it's hard to say). So for my dd, I'm wondering whether PANDAS was every really the issue or whether we've just been dealing with Bartonella all along and strep coincidentally occurred at the same time....Not sure I'll ever have an answer, or whether it really matters for her at this point. But it may be a distinction in the future for others if we can ever get some research done around it...

 

Hi Kara,

 

One thing that has always affirmed the "inflammation" theory for me is the positive impact of ibuprofen and that my dd11 had the constantly dilated pupils once her symptoms became chronic. In researching dilated pupils, there are only a few things identified as causing this...and none of them are good. Specific medications and drug overdose can result in dilated pupils. And brain injury/inflammation can result in dilated pupils. Even though my dd experienced some improvements with abx only, she experienced significant improvement with ivig and the ivig has been the only treatment that has resulted in normal dilation of her eyes, usually 10-14 days after the infusion. It's so wonderful to see those beautiful, hazel eyes!

 

If your question is....are the antibodies attacking the brain causing inflammation or is it infection of various etiology causing the inflammation....that is another million dollar question. But my vote, FWIW, is inflammation is the factor.

 

Jill

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Well it feels good to know we aren't an anomaly here, even though it shakes my confidence to know there are others not achieving health who are following the same protocol as we are. So IVIG question - we are not mentally ready to subject her to that yet....but a month ago or so there was a long thread of folks who had success with IVIG. Complete success, never to return to the doctor. I think... Any posters out there who can confirm? I guess I'm thinking that if we could get her titers down, the OCD would calm down, even as we continue to treat for lyme.

 

I think I'm a minority voice, but IVIG was a very bad experience for my son. It is the one treatment I would not do again, but I know others feel quite the opposite. I always always struggled with the decision and considered it a "last resort" (unlike pex, which always felt right and I have no regrets). So my only advice is to follow your gut. It will probably be more accurate than the advice of others, pro or con.

 

LLM, we are right there with you. Our DS11 (now almost 13) had a bad experience with IVIG, whereas PEX was a breeze and most beneficial. I bet it took him 10 months to get over all the side effects, whether it was herxing or not, we do not know. Our insurance covered PEX, (80%). We are not sure if they would cover it again. We are in the middle of Lyme treatment and would like to get all possible Lyme / co-infections cleared before we do it again if needed. But IVIG...well, not so sure we would even do that again. The prescribing doc said we should try a lower dose, to prevent him from getting so sick. We are aware HD is the preferred method for PANDAS kids. He got 2 gr/kilo over 2 days...only got 1/2 bag in him on the 2nd day, so he received 1.5 total. He was so sick the 2nd day, they admitted him in the hospital that evening. So, what does this mean? Not sure. The only issue we had with PEX was it was short lived. We saw about a 40% improvement for a month, he then got the swine flu and went downhill from there. We hope this Lyme treatment works, have been at it for about 3 months and have seen some slight improvements since adding doxycycline at last visit. Now on monthly bicillin shots, augmentin and doxy. Within 48 hrs of adding the doxy, we saw improvements in personality and mood. Still major struggle is with tics, and ADHD, has some OCD.

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Well it feels good to know we aren't an anomaly here, even though it shakes my confidence to know there are others not achieving health who are following the same protocol as we are. So IVIG question - we are not mentally ready to subject her to that yet....but a month ago or so there was a long thread of folks who had success with IVIG. Complete success, never to return to the doctor. I think... Any posters out there who can confirm? I guess I'm thinking that if we could get her titers down, the OCD would calm down, even as we continue to treat for lyme.

 

I think I'm a minority voice, but IVIG was a very bad experience for my son. It is the one treatment I would not do again, but I know others feel quite the opposite. I always always struggled with the decision and considered it a "last resort" (unlike pex, which always felt right and I have no regrets). So my only advice is to follow your gut. It will probably be more accurate than the advice of others, pro or con.

 

LLM, we are right there with you. Our DS11 (now almost 13) had a bad experience with IVIG, whereas PEX was a breeze and most beneficial. I bet it took him 10 months to get over all the side effects, whether it was herxing or not, we do not know. Our insurance covered PEX, (80%). We are not sure if they would cover it again. We are in the middle of Lyme treatment and would like to get all possible Lyme / co-infections cleared before we do it again if needed. But IVIG...well, not so sure we would even do that again. The prescribing doc said we should try a lower dose, to prevent him from getting so sick. We are aware HD is the preferred method for PANDAS kids. He got 2 gr/kilo over 2 days...only got 1/2 bag in him on the 2nd day, so he received 1.5 total. He was so sick the 2nd day, they admitted him in the hospital that evening. So, what does this mean? Not sure. The only issue we had with PEX was it was short lived. We saw about a 40% improvement for a month, he then got the swine flu and went downhill from there. We hope this Lyme treatment works, have been at it for about 3 months and have seen some slight improvements since adding doxycycline at last visit. Now on monthly bicillin shots, augmentin and doxy. Within 48 hrs of adding the doxy, we saw improvements in personality and mood. Still major struggle is with tics, and ADHD, has some OCD.

 

MMC, do you know how old the child has to be to get doxy? Because I have always heard for adults doxy and bicillin shots were the preferred treatment for lyme disease. I think my daughter, 10, is too young, although she is 90 pounds. What are the downsides to that treatment?

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Well it feels good to know we aren't an anomaly here, even though it shakes my confidence to know there are others not achieving health who are following the same protocol as we are. So IVIG question - we are not mentally ready to subject her to that yet....but a month ago or so there was a long thread of folks who had success with IVIG. Complete success, never to return to the doctor. I think... Any posters out there who can confirm? I guess I'm thinking that if we could get her titers down, the OCD would calm down, even as we continue to treat for lyme.

 

I think I'm a minority voice, but IVIG was a very bad experience for my son. It is the one treatment I would not do again, but I know others feel quite the opposite. I always always struggled with the decision and considered it a "last resort" (unlike pex, which always felt right and I have no regrets). So my only advice is to follow your gut. It will probably be more accurate than the advice of others, pro or con.

 

LLM, we are right there with you. Our DS11 (now almost 13) had a bad experience with IVIG, whereas PEX was a breeze and most beneficial. I bet it took him 10 months to get over all the side effects, whether it was herxing or not, we do not know. Our insurance covered PEX, (80%). We are not sure if they would cover it again. We are in the middle of Lyme treatment and would like to get all possible Lyme / co-infections cleared before we do it again if needed. But IVIG...well, not so sure we would even do that again. The prescribing doc said we should try a lower dose, to prevent him from getting so sick. We are aware HD is the preferred method for PANDAS kids. He got 2 gr/kilo over 2 days...only got 1/2 bag in him on the 2nd day, so he received 1.5 total. He was so sick the 2nd day, they admitted him in the hospital that evening. So, what does this mean? Not sure. The only issue we had with PEX was it was short lived. We saw about a 40% improvement for a month, he then got the swine flu and went downhill from there. We hope this Lyme treatment works, have been at it for about 3 months and have seen some slight improvements since adding doxycycline at last visit. Now on monthly bicillin shots, augmentin and doxy. Within 48 hrs of adding the doxy, we saw improvements in personality and mood. Still major struggle is with tics, and ADHD, has some OCD.

 

MMC, do you know how old the child has to be to get doxy? Because I have always heard for adults doxy and bicillin shots were the preferred treatment for lyme disease. I think my daughter, 10, is too young, although she is 90 pounds. What are the downsides to that treatment?

 

Laure, not sure about an age limit on doxy. I would think age 10 and 90 lbs is fine...dosage will be adjusted by weight. I think DS is on 50 mg twice a day, fairly low dosage compared to his 1000mg of aug a day. He weighs about 77 lbs. No downsides noted yet. Have seen some herxing, but not much lately. His stomach is fine so far. On lots of probiotics and make sure eats before the doxy. Doxy does cause skin sensivity, so puts on tons of sun screen and is not in direct sun much...no issues so far. I personally know two adults on doxy for lyme treatment, so it is a preferred Lyme drug. We sure saw some improvements as mentioned just 48 hrs of being on doxy. maybe it was just the timing, and is getting better b/c of combination of abx. We sure hope so.

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Well it feels good to know we aren't an anomaly here, even though it shakes my confidence to know there are others not achieving health who are following the same protocol as we are. So IVIG question - we are not mentally ready to subject her to that yet....but a month ago or so there was a long thread of folks who had success with IVIG. Complete success, never to return to the doctor. I think... Any posters out there who can confirm? I guess I'm thinking that if we could get her titers down, the OCD would calm down, even as we continue to treat for lyme.

 

I think I'm a minority voice, but IVIG was a very bad experience for my son. It is the one treatment I would not do again, but I know others feel quite the opposite. I always always struggled with the decision and considered it a "last resort" (unlike pex, which always felt right and I have no regrets). So my only advice is to follow your gut. It will probably be more accurate than the advice of others, pro or con.

 

LLM, we are right there with you. Our DS11 (now almost 13) had a bad experience with IVIG, whereas PEX was a breeze and most beneficial. I bet it took him 10 months to get over all the side effects, whether it was herxing or not, we do not know. Our insurance covered PEX, (80%). We are not sure if they would cover it again. We are in the middle of Lyme treatment and would like to get all possible Lyme / co-infections cleared before we do it again if needed. But IVIG...well, not so sure we would even do that again. The prescribing doc said we should try a lower dose, to prevent him from getting so sick. We are aware HD is the preferred method for PANDAS kids. He got 2 gr/kilo over 2 days...only got 1/2 bag in him on the 2nd day, so he received 1.5 total. He was so sick the 2nd day, they admitted him in the hospital that evening. So, what does this mean? Not sure. The only issue we had with PEX was it was short lived. We saw about a 40% improvement for a month, he then got the swine flu and went downhill from there. We hope this Lyme treatment works, have been at it for about 3 months and have seen some slight improvements since adding doxycycline at last visit. Now on monthly bicillin shots, augmentin and doxy. Within 48 hrs of adding the doxy, we saw improvements in personality and mood. Still major struggle is with tics, and ADHD, has some OCD.

 

MMC, do you know how old the child has to be to get doxy? Because I have always heard for adults doxy and bicillin shots were the preferred treatment for lyme disease. I think my daughter, 10, is too young, although she is 90 pounds. What are the downsides to that treatment?

 

Laure, not sure about an age limit on doxy. I would think age 10 and 90 lbs is fine...dosage will be adjusted by weight. I think DS is on 50 mg twice a day, fairly low dosage compared to his 1000mg of aug a day. He weighs about 77 lbs. No downsides noted yet. Have seen some herxing, but not much lately. His stomach is fine so far. On lots of probiotics and make sure eats before the doxy. Doxy does cause skin sensivity, so puts on tons of sun screen and is not in direct sun much...no issues so far. I personally know two adults on doxy for lyme treatment, so it is a preferred Lyme drug. We sure saw some improvements as mentioned just 48 hrs of being on doxy. maybe it was just the timing, and is getting better b/c of combination of abx. We sure hope so.

 

You should feel very hopeful. My brother had lyme disease very very seriously about 10 years ago, totally 100% healed now. For him it was weekly bicillin shots, along with doxy for 6 months. Then I'm sure a taper and cyst buster, but the worst was over after 6 months. As I said, he was so very ill, had to leave his job temporarily on disability. Keep us posted!! Who is you doc and where are you located? You can PM me if you'd prefer.

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Yet, here we have a group of kids who are all presenting with similar problems, all of us having come from a Pandas dx. Lyme literature suggests that if you can lessen the load, autoimmunity may resolve. So the focus is on germ warfare. But how do you support your child and your family during the long long battle? This is nuts. My current thinking is that maybe what I'm seeing isn't a traditional herx but more of an autoimmune response. Not sure what to do if that's the case. Or maybe I need to do more research on biofilms. But all of a sudden, this path feels "wrong" - getting better shouldn't bring us back to the really bad places for months at a time. Maybe our kids are a sub-group, or maybe it's because they're kids and they respond differently, but the fact that it isn't just my kid struggling like this makes me think there's more to this than a "herx." The last time I felt this way was after IVIG when DS didn't follow the script and react as predicted. That led us to lyme. It's happening again, but I don't know what to do about it. I'm missing a puzzle piece. We stay the course...for now.

 

It makes me wonder if a doctor like Ann Corson who seems to know so much about pediatric lyme, would be interested in hearing from us as a group. I think we are still having good progression with dd9 but dd8 is not improving as I would like to see yet. Maybe there are different protocol that would help the pandas/lyme kids who are not getting better. Anyway, just something that popped into my mind....

 

Susan

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From what I understand, the age limit for doxy has to do with tooth development, not age per se or weight. Doxy can permanently stain teeth that are still developing (at least, that's what I recall as the issue).

 

Shae's mom - on day 2 of IVIG, my son developed a fever almost immediately. It stayed between 100-102 all day. He became lethargic, hard to rouse, nauseous. They slowed the IV drip, so what took 4 hrs on day 1 took 9 hrs on day 2. They held off on giving motrin and benadryl at noon because they were afraid he'd throw up. When they finally gave it to him at 4pm (because we were driving home that night), the fever broke and he was responsive in about 20 minutes. Everyone shook their heads - had never seen this before. This may have been our first omen. But the IVIG sent DS into a prolonged exacerbation - 8 weeks of h**l. OCD (tho mild compared to most, as this has never been DS's major issue), we couldn't drive a mile without his needing to go to the bathroom, angry, edgy, PMS-ey, defiant, manic-silly-hyper, severe muscle pain, and scrambled eggs for brains. His handwriting looked like he'd suffered a stroke and after 10 weeks, he couldn't tell me what 7-0 was, as he was about to enter the 3rd grade. The emotional roller coaster was really hard on everyone, but it was the brain fog that was so heartbreaking. It was 12 weeks before we started to see the fog lift a bit and then 2 weeks later we started lyme treatment.

 

In the 3 months after that, he made more progress than he'd made in 2 years of Pandas treatments. Between Oct and Jan., he gained 7 reading levels (peers gained about 4), he doubled his reading fluency and all of his academics improved to grade level after lagging for so long. So this improvement made me feel really good about following a TBI protocol. When he stalled in Feb, I thought, ok, this happens. We'll switch abx and the progress will resume. And when things got bad (see description of post-IVIG), I thought, ok, its a herx. But tics also returned, which we hadn't seen since pex 18 months prior. And even tho I'll take tics over OCD any day, it brings back a PTSD response for me. Because the tics are always accompanied by the thick fog. I was prepared for a 3-4 week herx, not a 7+ week one (tho they are better than a month ago).

 

If you're old enough, you may remember a Cecil B DeMille/Charlton Heston movie "Moses". In one scene, when all the first born sons are killed by a mystery illness (but skips the houses that have lamb blood on their doors), the mystery illness is illustrated by a fast-moving, green fog (probably dry ice, but as a kid it looked eerie). You hear lots of mothers wailing in the city. That fast moving fog is what comes with my son's tics. I lose him, for many many weeks or months. So it's not the tics but the supporting cast, that sends me over the edge.

 

For now, we've resumed omnicef after our 4 day break but will hold off on tindamax for awhile. I am trying to be open minded and patient. But I also don't want to be married to a dx and try to make things fit into a box the way I may have with Pandas. DCmom - I hear ya, just from the other side of the coin.

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In regards to slipping, ds regressed horribly about a week into treatment, we stayed the course about a month, but could not take it any longer. We stopped and treated gut…vanco and diflucan and( zith)…got better, not a lot, took about a week break from all abx, no change, then treated again vanco, difulcan and zith…and gained more ground….stayed on zith for a while….(ps, for my ds, any vocal is indication of either clostridia and/or yeast)(oh, or like pandas16 mentioned, but i do not understand...an autoimmunresponse to things such as biaxin)

Still concerned about dismissing our lyme indications, but more curious his always slightly elevated myco p.iggs

So decided to stop zith..started doxy at 50mg for a week …no big wow…upped to 100mg for the last 3-4 weeks and things seem better as the parent but ds says things are a 7 ½…where if I didn’t ask I would rate at 5+/-. It’s the pain from the tics and I think it makes him phyisically tired….unless it is the lymes causing fatigue?

 

But another factor is pollen has dropped like a rock as I said it would and the count is below 100(was in 3000’s). I am curious if the doxy is helping…we are better from stopping lymes and treating gut

 

I want to mention….there was something on PBS 2 months ago about the gut and probiotics and that you need to get them to the stomach and lower intestine. Pearls are one of the best to make it to the lower intestines( so not necessarily just based on giving more probiotics, but more about the right combo)

 

If it weren’t for the pain(and the sluggishness) I wonder if ds would feel like things were a 3 or 4. But, I want to withdraw that statement, as it is amazing as what seems not that bad, when they were unbearable before. The reality is, it is not normal for someone to tic, weather it is a 1,2,3,4,5….. and I wonder what someone who has not been around tics would rate my ds???

 

(ds is still doing allergy shots, and i cannot say i see negative reaction to them specificially...allergies, per say, were the best they have ever been, though ds was doing horrible(pan/pit wise) march and april(but was treating gut at that time, along with the peak of pollen season))

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If you're old enough, you may remember a Cecil B DeMille/Charlton Heston movie "Moses"

 

Definitely old enough to remember this movie! We only had something like three channels back then so we had to watch it every year.

 

They slowed the IV drip, so what took 4 hrs on day 1 took 9 hrs on day 2

 

Sounds very similar to our experience. Day 1 took 8 hours; day 2 took almost twice as long and we didn't get home until midnight. At one point they stopped the IVIg and gave her fluids only. We definitely questioned our decision that first week but saw such significant improvements after that we decided to continue. It probably also helped that we knew a family whose son(a year younger than Shae) had been receiving IVIG for five years at that time due to a PIDD. Their son had never had any problems.

 

I was just curious-no judgement. I can definitely understand why your family has decided not to do it again.

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LLM: Hopefully you read my comments regarding older DS. Jan 1st no TICS. Jan. 2nd antibiotic rotation and slowly a coughing TIC et al developed. We are now 18/19 weeks into this rotation and things have almost resolved. It can really shatter ones confidence in the process to see these symptoms return after soooooooooo long of treatment. BUT again, there has been a shift in our overall baseline upwards over this exhaustive period. We are so close but yet so far away... From my perspective 4 weeks, 7 weeks, 18/19s weeks, 6 month herx's..... It is a long battle with the microbe. AND, herx's truly do last that long unfortunately.

 

Right now we are in the middle of a 5 week herx with our younger son. Yes, the rages started right around the 48/72 hour after rotation and have built in frequency to almost a daily event. The OCD has returned although it comes in blips. Let me just go bang my head against the wall... I'll be right back. Thankfully, we meet with the Dr. next week to help determine 'if we push through or lighten the antibiotic load' ourselves. He has one notable improvement and that is his willingness to play with an unknown child... so there is a tiny little bit of hope that we are on the right path.

 

After two long years, I am finally feeling like I need to carve out a life while my kids get better, not when they are better.

 

-Wendy

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From my perspective 4 weeks, 7 weeks, 18/19s weeks, 6 month herx's..... It is a long battle with the microbe. AND, herx's truly do last that long unfortunately.

 

Yes, I realize it may well be a herx. I perversely hope so. And DS was better today - far less edgy, agreeable and "here", not far away. But when we didn't see any change for 3 days after stopping omnicef last week, that didn't feel right. So I'm just gun shy about dismissing the things that don't fit neatly into a lyme picture. I ignored myoclonus, serious brain fog, muscle pain and fevers for 2 years while I very publicly talked about all the things that did fit into our Pandas picture. I just don't want to make the same mistake twice.

 

The other thing I'm trying to avoid is only posting when I'm in a good place, and not "airing dirty laundry" - waiting until after dark moments. I generally only sort out my confusing moments with one or two people, but when I saw this thread and Laure was wondering if she was the only one feeling like she did, I figured it was time to chime in with my own doubts and fears. Hopefully, in a week or two, it will be clearer.

 

After two long years, I am finally feeling like I need to carve out a life while my kids get better, not when they are better.

 

-Wendy

I like this sentiment. I think I'm getting to this point too. Guess you kinda have to - we've been here about the same amount of time. When my son first got really sick, I stopped taking photos of everyday events. I didn't want memories with those dark circles under his eyes or videos of tics. This year, my mother's day present was a new camera, which I plan to use a lot this summer. It's time to stop holding on for dear life and time to remember to hold life dear, tics, ticks and all.

 

I want to thank all of you for your support in this thread. You guys helped me off the cliff and back onto solid ground (a good day for DS didn't hurt either).

 

Laura

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Well I can surely relate Pandas, Pandas, Pandas... then Lyme and my own fears. We're tired here and I too can be brought to my knees in prayer with this disease.

 

I am sure everyone can appreciate this story... herx'ing at its finest. My younger son is doing sooooooooo horrible right now that just about anything will set him off into a rage. Twin sister looks at him, twin sister talks to him... rage. He has to win the race, first in the car, nobody can touch the lego's... rage. He has totally regressed with ALL potty training issues suddenly. You get the picture. It been five weeks 'what the heck'. This herx is not resolving its building!!!

 

Anyway, tonight I decide to get all the kids into the hot tub. Kill time and relax everyone before bed. Younger DS goes into a rage because we all get in before him. Now he is demanding we all get out. I mean my gosh, there is an order to things right? Twenty minutes back and forth refusing to put his swim suit on until we are all standing out in the cold air in the right spot with our feet on the ground. He is three and has no concept of fighting back the OCD so we all comply. Finally he settles from the rage and happily gets into the hot tub as we all follow. Older PANDAS/Lyme son asks 'what the heck is wrong with him'. I explain it is the antibiotic change. Older DS then turns to younger DS and puts his arm around him and explains the notion of a herx. Comforting his younger brother and telling him we all understand..... and it will get better. I sure hope he is right because when you are in the thick of it, it can surely crumble your confidence. At these times, you really do rethink every treatment option and antibiotic combo ever invented.

 

I am grateful my older DS is doing well 'knock on every piece of wood I can find', I am grateful my younger DD 'knock again on every piece of wood I can find', I am grateful I am feeling better, I am grateful for the internet, I am grateful for this forum, I am grateful we have hope, I grateful for all my new found friends that understand my life........ BUT THIS IS NOT EASY.

Edited by SF Mom
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Wendy, I am sorry you are going through this. You have always been so strong, like a super hero(or at least that is how i imagine you( big cape, a tick logo with an X over it). I am glad you feel comfortable to share your concerns.

 

I've been trying a little too, to carve out my existance(more likely mid-life crisis), as 2 years have GONE, and i don't know where they are.

 

Cyber hugs to you(()))

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