We are positive too......

[dabel]

Okay. We have all read the rather lengthy thread on all the positive Igenex tests etc. I have to admit that I too have thought about how all of these people can be coming up positive and hopping from the PANDAS board to the Lymes. I think we have to keep in mind that the people who are sending their blood in for testing are not just Joe Blow off of the street. These are people (kids and adults) who are struggling and searching for answers and most have not responded properly or for long term to typical PANDAS treatment. We all want to know what it is that we or our children are battling. Most of us thought we had it figured out. When we got a PANDAS diagnosis we thought....well, it is about time the mystery is finally solved after years of watching our child suffer terribly! So we ventured in to this new world with new found hope for our childs future. Before this there was not much hope as we thought he would not live through his teenage years and we were desperate to help him. We started high dose long term abx, and high dose IVIG. Over about a six month period following hd IVIG God returned our beautiful child to us! He started school this fall for the first time in two years. He even joined the cross country team which was HUGE! He had not been involved in anything for years. His first meet I sat and watched with tears streaming down my face. He was interacting with his team mates, cheering them on, and just being a normal thirteen year old boy. This is what we have wanted. This was all we had wanted. We just wanted him to be able to function as a normal boy. He was doing well in school. There was no fighting every morning to get him there ... heck he was up getting ready in the morning before I went to wake him up. Life was good!!! Then he got a little virus.... nothing major. He missed one day of school but a week later here comes the black cloud again. I quickly panicked and we threw him on a steroid burst to try to head this monster off before it took hold. This did perk him up to a degree but still not good and very temporary. Then we got approved for monthly IVIG and thought this would pull him out....he got worse. I lost my son again! He has had to go stay somewhere else because he can't function within the family and was not here for Thanksgiving or Christmas.

 

 

A specialty lab decided to do a case study on my family because I have four children who have had illness induced changes. This child comes up with chronic gram negative bacterial infection, chronic gram positive bacterial infection, chronic fungal infection, and chronic viral infection. I am a true believer in the fact that at the end of the day it is nice to know what you are battling but the bottom line is most of these kids are battling chronic multiple infections that tax their immune systems. Each bug makes it all the easier for the next bug to set up shop. He has strep that we have not be able to eradicate with long term high dose abx and three IVIG's. Mycoplasma. Lyme. Candida. Etc... We have not tested for co infections yet but I will guarantee you he has those too. My point with all of this is the reason that a lot of these kids are coming up positive is because they are the kids that have not gotten better or did not stay better. Why? Because so much more was going on that needs to be addressed before there is complete healing. I thought I had three and possibly four PANDAS kids. What I have is three possibly four kids with chronic multiple infections....Lyme being one of them. Oh yeah....and I just found out that I have it too. We all present differently.....some can function and some can not. What I know is that all need to be treated with a combination of things to rid them of the combination of bugs that are assaulting their systems. This can be a very serious situation and can be without a doubt in my mind life threatening as is the case with my one son. I pray I can get him better before I loose him!

 

Sorry for the rant or pouring out of thought. Maybe I just had to write.

[sptcmom]

Thank you for posting this. What an amazingly well thought out and well written post.Well said.

Our thoughts and prayers are with you. My story is that of 6 years of struggle with an Asperger's diagnosis, then PANDAS, IVIG etc etc - all temporary fixes. Now finally several wonderful moms on this forum guided me towards Lyme testing and DS and I are both positive, both herxing, ups and downs but overall improving and hopeful.

Its a long haul as you know but I totally agree with you. There are several chronic infections, opportunistic and basic deep intracellular ones. It is very hard to identify these and as each layer peels off, you will see a healthier child emerge for real- no band-aids. Just my opinion and experience.Once the body regains an internal balance the immune system will reboot and function better.That is my belief.

You can vent anytime. Im sure you will find support and empathy. Most of us have been there.

Jodie

[sf_mom]

From one very sick family to another: prayers and Godspeed!!!!!! I too believe it is a Multiple Chronic Infection Syndrome (MCIS) and are peeling off the layers of illness one infection at a time.

 

I look forward to hearing up dates of recovery for everyone.

 

-Wendy

Edited January 10, 2011 by SF Mom

[lyme_mom]

Okay. We have all read the rather lengthy thread on all the positive Igenex tests etc. I have to admit that I too have thought about how all of these people can be coming up positive and hopping from the PANDAS board to the Lymes. I think we have to keep in mind that the people who are sending their blood in for testing are not just Joe Blow off of the street. These are people (kids and adults) who are struggling and searching for answers and most have not responded properly or for long term to typical PANDAS treatment. We all want to know what it is that we or our children are battling. Most of us thought we had it figured out. When we got a PANDAS diagnosis we thought....well, it is about time the mystery is finally solved after years of watching our child suffer terribly! So we ventured in to this new world with new found hope for our childs future. Before this there was not much hope as we thought he would not live through his teenage years and we were desperate to help him. We started high dose long term abx, and high dose IVIG. Over about a six month period following hd IVIG God returned our beautiful child to us! He started school this fall for the first time in two years. He even joined the cross country team which was HUGE! He had not been involved in anything for years. His first meet I sat and watched with tears streaming down my face. He was interacting with his team mates, cheering them on, and just being a normal thirteen year old boy. This is what we have wanted. This was all we had wanted. We just wanted him to be able to function as a normal boy. He was doing well in school. There was no fighting every morning to get him there ... heck he was up getting ready in the morning before I went to wake him up. Life was good!!! Then he got a little virus.... nothing major. He missed one day of school but a week later here comes the black cloud again. I quickly panicked and we threw him on a steroid burst to try to head this monster off before it took hold. This did perk him up to a degree but still not good and very temporary. Then we got approved for monthly IVIG and thought this would pull him out....he got worse. I lost my son again! He has had to go stay somewhere else because he can't function within the family and was not here for Thanksgiving or Christmas.

 

 

A specialty lab decided to do a case study on my family because I have four children who have had illness induced changes. This child comes up with chronic gram negative bacterial infection, chronic gram positive bacterial infection, chronic fungal infection, and chronic viral infection. I am a true believer in the fact that at the end of the day it is nice to know what you are battling but the bottom line is most of these kids are battling chronic multiple infections that tax their immune systems. Each bug makes it all the easier for the next bug to set up shop. He has strep that we have not be able to eradicate with long term high dose abx and three IVIG's. Mycoplasma. Lyme. Candida. Etc... We have not tested for co infections yet but I will guarantee you he has those too. My point with all of this is the reason that a lot of these kids are coming up positive is because they are the kids that have not gotten better or did not stay better. Why? Because so much more was going on that needs to be addressed before there is complete healing. I thought I had three and possibly four PANDAS kids. What I have is three possibly four kids with chronic multiple infections....Lyme being one of them. Oh yeah....and I just found out that I have it too. We all present differently.....some can function and some can not. What I know is that all need to be treated with a combination of things to rid them of the combination of bugs that are assaulting their systems. This can be a very serious situation and can be without a doubt in my mind life threatening as is the case with my one son. I pray I can get him better before I loose him!

 

Sorry for the rant or pouring out of thought. Maybe I just had to write.

Your story is so moving and I can totally relate. My son is also 13 and was very very sick with lyme for over two years. He did not have pandas but he was nonetheless very ill. Sometimes he felt like he was dying and there were times when he could not walk. At times I wondered if he would ever beat it and be well enough to be off the antibiotics. After 2 years and 2 months he is off the drugs and doing really well. He never had steroids or ivig. I think all lyme patients have multiple infections these days and that is why llmds are great doctors to see b/c they treat a ton of infections everyday, not just lyme. Those of us who have dealt with lyme often say "lyme" when we are referring to all tick-borne infections so it can be a little confusing for newcomers. When my son was first diagnosed with lyme after developing Bells Palsy the llmd told me that he could also have Bartonella and/or Babesia or any of these other tick-borne infections. I was like "huh"? I was having trouble accepting that he had lyme and then I was supposed to believe he had all these other bugs possibly. I was thinking "OMG what is next?.." I knew nothing of parasites then and that would really have blown my mind. Someone on this board made a funny comment once about "where did all these bugs come from!!?" It made me laugh b/c this is like science fiction, isn't it? I remember thinking well he just has lyme but that was b/c I couldn't imagine him with all these bugs. As it turns out he definitely had bartonella and we will never know for sure if he had babesia too. This may be what is happening with so many of the parents who think that they are just dealing with strep. Its human nature I guess. Your son can get well so hang in there!! We are rooting for you.

[momofgirls]

Dabel

Your post brought tears to my eyes and was the first worth responding to today! I hate the fight. Lyme or pandas? Is Igenex real? Immune cross-reactivity with strep and lyme. Blah blah blah! I hope some of the lyme naysers think about your son before they advise another parent to just over look a positive lyme or co-infection result. It is no coincidence that these kids are testing positive for multiple infections. Stories like your sons are the reason some of us are pushing so hard to look deeper into the infections that lurk within our kids. Good luck with your son and never give up hope. Now that you know with what he is infected you can get him the treatment he needs.

Kim

 

 

From one very sick family to another: prayers and Godspeed!!!!!! I too believe it is a Multiple Chronic Infection Syndrome (MCIS) and are peeling of the layers of illness one infection at a time.

 

I look forward to hearing up dates of recovery for everyone.

 

-Wendy

[philamom]

yes...many tears! I will be adding some prayers too! Melinda

Edited January 9, 2011 by philamom

[dabel]

I want to thank you all for your kind and encouraging words! I hate the fight too. The goal for us all is the same and that is to heal our suffering children! If any of you have dealt with an older non compliant (due to depression and just plain does not want to be here) child I would love to hear any suggestions to get him on board long enough to lift the black cloud so he wants to get better. We have been down so many roads with him and he is sick of it and I really don't blame him. He is tired of putting all of this stuff into his body and it doesn't work anyway. I need him to hang on long enough to give this new approach a try in order to give him back his life. I am seeing a Lymes doc on Wed for one of my other boys I am going to talk to him about this other child. What concerns me is that the medicine will not help him if he does not swallow it. I am also nervous about the whole get worse before you better thing. If he gets worse we have some REAL problems and I worry that he will jump ship as soon as he feels worse if I can get him to do it at all. I wish this was easy....but it's not.

[MichaelTampa]

dabel,

 

Yes, well said, right on.

 

As to your son and your concerns about him not wanting treatment, particularly if he gets worse, sounds like a tough situation indeed. Not everyone gets really horrible at the beginning of treatment. For me, I was more tired and had some headaches, but it was not terrible. Everyone is different. Here's hoping it's not too bad for him, and maybe he'll at least notice something good going on for him there. I do think that the other support activities people can do, can make a difference in how much herxing goes on. With everything, besides compliance, time and money are factors also, so I will just toss out some ideas that could potentially help, if not overly difficult to execute.

 

- something for detoxing/cleansing body--sarsaparilla, red root, stephania, chlorella (be careful with brand), cholestryamine, activated charcoal--there are many choices, this is not a complete list

 

- mineral support, particularly chromium and zinc and magnesium and calcium, but others are important too, extra important if using binders for detoxing, but important even just with abx, because the dead bugs feed the yeast, and minerals help negate some of the bad effects of yeast

 

- of course probiotics, with any antibiotics

 

- oxygen concentrator is something I used for a couple months, 2 hours a day, before starting lyme treatment, before I knew I had lyme, it was gentle and helped a lot, don't know, but I bet for many this would be a nice easy gentle way to begin treatment, and would result in less herxing once the serious abx are started

 

- treatment for parasites/worms, can be herbs, Rx, and even avoiding onions/garlic/mustard helps, though does require significant diet change for most as these things are everywhere

 

- acupuncture can help things flow through the body better

 

Anyway, just some ideas, but mainly wanted to say I'm pulling for ya'all.

[Iowadawn]

dabel-

 

You know your friend in Iowa is here for you 24/7. Dawn

[kmom]

Dabel,

 

Well put. I have had this overwhelming feeling lately to buy out the front page of the NY Times and scream to the oblivious and naysayers what is happening to our kids. (like I have that kind of $! but nevertheless the thought makes me smile big!) It is so frustrating. I feel at times I pigion holed us into a just a PANDAS dx for my kids. I thought I figured it out b/c DD fit the classic PANDAS case perfectly. Completely normal, happy, good student contracts chronic stubborn strep and after T&A, boom PANDAS. Hindsight is 20/20 and down the road hopefully most doctors will look at families like ours and the LLMDs , holistic doc and any others docs brave enough to look outside the box and fight for our kids as smart cookies before our time b/c we had a clue while all these other docs say Chronic Lyme or MCID doesn't exist. I keep saying I want one of the doctors to live in my house. He/she can stay for free and just observe. I wouldn't even ask for meds b/c I have good docs providing them but just so they could see everything that goes on through this journey. Living it is way different than hearing about it. Luckily the LLMDs we've all found seem to understand. I guess I get angry that while we had tunnel vision for PANDAS, our neuro and immunologist weren't pushing other testing. I mean, sure we did a Quest WB which was neg. and we even checked mycoplasma but that wasn't revisited for months later when I had to ask for a recheck and voila, my DD and I were positive for mycoP. I think the important part tho is not to remain too angry for too long. I stay in that state just enough to convert it to energy and perserverance.

 

As far as getting your son through this to win the fight, I don't have much advice. I get grief from my 6 yr. old about he doesn't want to go to doctors b/c he doesn't get better and medicine doesn't work. He's absolutely sick of meds. I understand. It's not fair but it is what it is. Is your son healthy enough to understand how killing off the bacteria causes neurotoxins, can make you feel worse, etc? It's tough to explain to my 6 and 9 yr. old altho my older one seems to understand it better. Both kids are doing better since Lyme tx but the 6 yr. old doesn't notice. He feels better but since that's his new normal at that moment, he isn't appreciating it or recognizing the progression like I do. All he sees is a huge pill case in his face daily. When we add a new meds, start killing more "buggies" and herxing happens, he's only remembering that he's still sick. I think a good LLMD might be able to help your son w/ the depression struggle. Plus, MichaelTampa had a good suggestion w/ detoxing. I really think charcoal and bentonite clay (we switch it up), epsom salt baths, probioitcs, boosting the immune system help. Have you checked all of his vitamin and mineral levels? Low vitamins like vit.B,an abundance of yeast and heavy metals and not eating a "clean" diet can really mess with your body on top of the infections. I was saying in another post today how I look back and our neuro and immunologist really missed the mark on these things. It took seeing a regular MD who focuses on good nutrition, good rest, boosting immune sys. and knows Lyme and other infections to really shift our focus get the ball moving in the right direction.

 

My heart aches for you. You must be exhausted caring for 4 sick children. When PANDAS started w/ just my DD, it was overwhelming. When my DS started 3 wks later it seemed like a sick joke. I honestly was embarrassed and hid it from neighbors and extended family in fear they'd think I was nuts. We were new to our town/state and that only complicated matters. And I am not embarrassed of the disease (PANDAS, Lyme, and/or MCID) but I needed time to understand it more so I could speak about it intelligently since so many people looked at us like we had 4 heads. The only people who seemed to understand a tiny bit were those who saw Saving Sammy and Lauren (sneezing tic) on The Today Show. As things morphed into a Lyme dx for the kids and simultaneously I got a flu shot which seemed to help knock my already taxed immune sys from lack of sleep, stress, etc to spiral downward and for my Lyme symptoms to hit hard. (In hindsight I had symptoms in the past but never this severe which dr. and I think b/c I had a more robust immune sys. then. Also, kids and I had been on abx's from time to time for sinus infections and other illnesses that seemed normal but looking back happened more than the average healthy person.) I used to look at some of my friends' kids and think they were lucky b/c their kids were never on abx, didn't have chronic ear infections, croup and bronchialitis. I used to beat myself up thinking it was due to bad genes or the fact I didn't breastfeed bc of a supposed prolactin tumor--elevated prolactin but no tumor ever seen on MRI--hmmmm????...come to find out Lyme may have played a role w/ that too.)

 

It's scary b/c I watched this Lyme forum grow. I went from "lurking" when I'd get done reading the PANDAS forum to now never even getting over to the PANDAS forum b/c I spend time on the Lyme forum when I get on the internet. Maybe the growing Lyme population on here isn't a bad thing. Maybe this will prove over time to the non-believer docs that they need to think outside their rigid box. Maybe better screening will be done in pediatricians offices b/c my ped. did nothing to help us. And what's even scarier is that I volunteer in my kids' school and more and more kids are emerging w/ anxiety, OCD, chronic strep, etc. And the last time I drove my kids to school a family of 4 deer came running out of the school yard. Used to be a beautiful sight to me...not anymore.

 

Best of luck! And please, vent anytime. It helps!

 

Kristie

Edited January 11, 2011 by kmom

[LNN]

So well said.

 

It's like being presented with a blob of brown paint. Was it always brown, or was it once white, then an infection added some red, which made pink. Then another infection added yellow and now you have a weird orange...by the time you find a doctor who can subtract colors, it can take a while to unravel how you got to brown.

 

"Doctor, I think my son has Yellow disease" "Impossible. Your son is brown. People with yellow disease look yellow, not brown. He does not present with classic Yellow disease symptoms. Therefore, he cannot have Yellow disease." So you find a doctor who can remove color and he takes away your son's Yellow disease. But your son is still not white. So what's going on.

 

Well, what's going on is that you may still need to treat Red disease. Only once you eradicate all the colors do you get your healthy child back.

 

As for your son, I haven't been faced with teens yet. But I can only suggest you do what you can to put yourself on the same side as him. The thing they tell you in Taking back to OCD is to make sure everyone accepts their roles. A teen can't fight OCD if it's being imposed on him. It's not the parent's job to fight the OCD, it's the child's. So he has to own it, and you have to become his coach. I can't imagine how hard that must be, but I think if you can take any steps toward that, it might help.

 

Thanks for this post!

[sf_mom]

I was actually rendered speechless by your story yesterday.

 

Today, I want to give you a little hope. My girlfriends son was talking suicide at 6, he was very depressed and often laid in his room with the lights off for hours even after his 3 hdIVIG. He refused medication often.... they threaten shots if he did not participate treatment. He started Lyme protocol June 28th and has made a huge turn around fairly rapidly. The herx didn't come until the 3 to 4 week mark and then fairly intense for 4 days but huge jump up in baseline at that time. At the beginning of summer it didn't look like he would be able to attend school in the fall. I am happy to report he made to school and he'll be o.k.

 

I know your son is older..... anything to just get him started and perhaps you'll get him to turn the corner and comply in a few weeks. It was nothing short of a miracle for her son and it was fairly immediate.

 

-Wendy

Edited January 11, 2011 by SF Mom

[PacificMama]

So many beautiful things written by all of you on this thread. Much needed. I get SO TIRED of of the energy that is put into disproving just about everything that encompasses these infections (testing; diagnosis; treatment, llmds... and on and on).

 

Yes: Multiple Chronic Infection Syndrome. Not for all, but for many.

 

Dabel, my heart goes out to you -- and to everyone who has a story just like you. Please hang in there... I know you will be posting positive updates here soon. My older daughter is a lyme treatment success story. My younger daughter is recently diagnosed -- which led us to realize that we are dealing with congenital situation as are so many here.

 

This is a relatively small lyme community here on latitudes. But please know that the lyme community in the U.S. is large, loud, organized and strong. There is a lot of information available, and a lot of support available if you need it. Please contact your local support group if you ever need anything! (see link).

http://www.lymenet.org/SupportGroups/UnitedStates/

 

As to your son, please ask your doc for advice. But the hope is, once he starts feeling a bit better, he will be more willing to do the treatment. In the mean time, bribe him with whatever works.

 

All the best.

Mary

[sf_mom]

I get SO TIRED of of the energy that is put into disproving just about everything that encompasses these infections (testing; diagnosis; treatment, llmds... and on and on).

 

Not to go off topic but I too am exhausted from this discussion. The most recent series of posts/comments both privately and publicly have caused me great alarm and the drone continues. At this point, my only hope is to keep helping one child or family at time that needs direction with MCIS but perhaps more off forum than on forum. In other words, I'm opting out of the debate going forward.

 

-Wendy

Edited January 11, 2011 by SF Mom

[smartyjones]

It's like being presented with a blob of brown paint. Was it always brown, or was it once white, then an infection added some red, which made pink. Then another infection added yellow and now you have a weird orange...by the time you find a doctor who can subtract colors, it can take a while to unravel how you got to brown.

 

"Doctor, I think my son has Yellow disease" "Impossible. Your son is brown. People with yellow disease look yellow, not brown. He does not present with classic Yellow disease symptoms. Therefore, he cannot have Yellow disease." So you find a doctor who can remove color and he takes away your son's Yellow disease. But your son is still not white. So what's going on.

 

Well, what's going on is that you may still need to treat Red disease. Only once you eradicate all the colors do you get your healthy child back.

 

wow LLM -- i love that. it so hits it! i'd love to see that pinned somewhere -- but, unfortunately, it may be one of those things that you can't really understand properly until you've lived it. you should keep that for speaking that you do!!