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I am hoping someone can offer some reassurance that I am on the right path. I feel so helpless and can't see any hope anymore. I am trying to hold back the tears as I type this. So I have 3 children who have pandas diagnosis. We definately have recurrent strep infections prior to staying on antibiotics. My 8 yr old son has tried numerous antibiotics and I have seen improvements in certain things but never to a good enough improvement. He has had ivig 3 times and I have seen worsening but never got to place of improvement. Now he has been treated clinically for Lyme/bartonella. We switched antibiotics and since beginning of June he us taking cipro in addition to rifampin and tindanax and probiotic. He is doing so much worse. Nasty, like a bully and demanding OCD just right phrases need to be repeated to him in particular way and things he didn't do for so long are back and things he never did like blinking eyes are extreme at the moment. So what does this mean? Every time there's worsening I am told it's herxing but I never get to a better place after the herx. I'm babbling and so frustrated because I am giving so much antibiotics and not certain that it's bartonella. Worsening is supposed to be hood sign but when will I see improvements?

I also got copy of some labs

Can you explain to ne what the the Drb1*04:jufr is dr jones wrote a positive near it.

The following alleles were found:drb1*04:01, and jufr.

What dies this all mean?

Ty,

Tami

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Tami,

 

I am so sorry you are having a rough time and I want to give you a big hug. Lyme treatment is not easy and not always a clear path to recovery. I am going to throw a couple of things out there to eventually check off the list. I believe your local DAN Dr. could help with some of the testing 'if I remember correctly you are seeing one' . I would also recommend seeing the local Dr. I recommended to you previously. With three kids, you need someone closer to home and to be in front of more regularly to problem solve on behalf of your kids. The particular Dr. in NJ was recommended by the local Lyme support groups. He has also helped one family tremendously, not posting to forum and with a similar situation of all three children 'Lyme/Pandas'. I would be happy to put you in touch with the mother for support and perspective on Dr. They also saw Dr. Jones too.

 

O.K. here is the list of issues that might be holding back from potential success and of course the worsening of symptoms could be a herx.

 

 

*There might be one or more viruses holding him back. You could do a viral panel through DAN. You could do ART testing for viruses. We did test for viruses via both blood work and ART... I have 4 viruses and probably why I suffer from fatigue. Our twins suffer from extremely high Coxsackies Titers (our LLMD is finding Coxsackies to be a common theme with his PANDAS like patients) and our older son has XMRV. All of us are on different anti-viral protocol.

 

*He could be suffering from mold related illness and or fungus issues. There are a couple of threads on how to test. LLM just recently ran all of the necessary testing via blood work. We did ART and are not finding mold but a potential fungus issue for me. Older DS is fine.

 

*It could be he is overwhelmed with toxins and his body is unable to process them and has HPU/KPU. Also a recent thread on this topic but implementing a detox protocol immediately might help. A couple of strong indicators for KPU: Chapped lips especially corners of mouth, white patches of skin 'not vitiligo', dark circles under eyes, aversion or reaction after being in chlorinated pools with increase in symptoms, white spots on fingernails.

 

*Potentially missing a co-infection/treating like Babesia.

 

*I can't remember if your children suffer from any immune deficiencies but it is common for those with IgA deficiencies to be slow responders to treatment.

 

*AND, of course the combo of antibiotics might not be right combo for him. We have had this happen with both Rifampin and Biaxin for older DS.

 

 

There are a few LLMDs that believe issues like mold/viruses need to be addressed in order to make progress with treatment. I hope this gives you some things to discuss with your Dr. next.

Edited by SF Mom
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Can you explain to ne what the the Drb1*04:jufr is dr jones wrote a positive near it.

The following alleles were found:drb1*04:01, and jufr.

What dies this all mean?

Ty,

Tami

So sorry for your situation with 3 children! Ds13 just had some of Dr. S tests done and these looks like them. You can go to his website and look them up on 'Rosetta Stone Table' but they are difficult to read-son's dr. had to do a phone consult with Dr. S to figure them out.

 

Here is what it looks like based on my result readings (so could be way off):

 

DRB1*4: multisusceptible (?)/dinoflagellates (do not know what this means...)

DRB1*01: Low MSH (this can indicate mold and/or mico - and not sure what else)

 

Best wishes for your children. It looks like you are on the right track which is great! Just getting to the bottom of the problem(s) is 1/2 the battle and recoup time the other 1/2. See if you can possibly get some alone-time to sort it all out (easier said than done!). Take care and keep posting.

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Tami-

 

Don't know if I have much to offer, but I so feel your pain. I have two daughters with pandas, who have been up and down this year (onset 2.5 yrs ago). They did have strep as an initial trigger, but now can be triggered by other illnesses. We have not done IVIG, thus far, but it might be in our future. We are still dealing with the impact of strep in both of them in late April :(

 

We have explored, and treated for, lyme, for at least 4 months with multiple abx in both girls, with no results- positive or negative. I was horrified every day at the amt of meds and supplements, and the result was as if they were getting placebo! So frustrating and bewildering.

 

We are now taking a step back. I have been consulting with a few new docs (one ILADS, one not). We have begun to really think that lyme is not the issue for my kids. We have stopped the lyme treatment, weeks ago, again with no effects. My older is currently on no abx, only 12mg of zoloft, which I plan to stop next week. My younger is still on Augmentin, but if/when she stabilizes- we will stop that as well. I feel after a few weeks of no meds we can really see where we are, and give their bodies a break. I am really starting to be concerned about the unintended consequences of all these meds, with no clear picture of anything positive they are doing. Both girls still caught strep while on multiple abx- which really makes me even question the use of prophyactic abx for pandas. They got strep- it was terrible, yes- but the world did not end, and due to aggressive inflammation/ immunomodulation they are okay now. OCD is hanging around- but for the most part they are happy and able to do what they want, and life is somewhat peaceful.

 

(My kids have followed a true pandas course, relapsing to be sure, but responsive to pex and steroids, long period of remission before relapse).

 

What we have found to be of most help to my kids are immunomodulating treatments. PEX, oral steroids and solumedral (high dose IV steroids). Without these treatments, I have no idea of where we would be right now, to be honest.

 

Prior to pandas onset (2.5 years ago) I had two normal, healthy, girls, with no (and one very little) anxiety. After pandas hit, both at times have been hurtling toward the point where I did not know how long I could care for them without hiring help :( Now, I have two kids with mild ocd and anxiety, to be sure, but who have been able to enjoy most of life, and do most of what they want- in my mind- thanks to these aggressive treatments by our wonderful docs.

 

Every child is SO different- which is what makes this SO hard :(

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Tami,

I'm in your shoes. My DS8 likely contracted lyme/bartonella when he was 5. Got strep twice three months later @ 6th birthday. So we thought Pandas. Did T&A - helped for two months. Then did pex - helped but only for 2 months. Did prednisone tapers twice - amazing response, but only for 2 months. Did IVIG last summer and had a horrible recovery - for 2.5 months. Finally found the lyme in October. Had an awesome response for the first 3 months, then stalled. So we added tindamax in April and had a horrible herx that brought us back to bad places. This, in my mind, confirms the lyme, but if his body can't handle the treatment, how do we get to a cure?

 

How much of this can you take? How many times do you ask your child and your spouse to follow you down another rabbit hole in the hopes of finding the final solution? On the other hand, we looked at home movies the other day - happened to pick a tape from when DS was 3. Both my DH and I were struck by how sharp he was, how his gears were constantly turning, how...normal...he was. The reminder of how he used to be - and who I know he is beneath the illness - has recharged me. And I have to remind myself that DS is far far better than he was 3 years ago. He's made a lot of progress. So it hasn't been a waste. Just not the entire solution.

 

I'd echo Wendy's post. Those are the next things to look at. I responded to your other post re: HLA-DR4 with some sites that might be helpful. The HPU test is a 24 hr urine catch but the test is only $70. You can probably contact the lab (PM me if you want their number) and call Dr J to see if he'll sign off on the order form. Or talk to Dr Js office on whether he feels additional blood work is called for. The "good" news is that HPU treatment (supplements) isn't expensive compared to what you've already been through. In the meantime, you might also look at a thread I started on the Pandas forum about luteolin. It sounds very promising and we may be trying it if the HPU thing isn't our answer.

 

Mold is a whole other story. But the point is, each step brings more knowledge. We are all on paths we never dreamed we'd be on. This was not in the script. But others have gone before us - and survived - and gotten well. The reason the doctors we talk about have their ideas and protocols is because others have come before us with the same stories, same symptoms, and while there's no one-size solution, there are things that help, things that can move you forward. So we keep putting one step in front of the other. It's either that, or give up (which I've fantasized about more than once). But for me, there's a little boy who deserves my very best, no matter how hard this gets. I'm guessing you have one (ok, three) of those too. Cry. Cry some more. Then take another step. And be strong again - they need you.

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Tami,

 

I am so sorry you are having a rough time and I want to give you a big hug. Lyme treatment is not easy and not always a clear path to recovery. I am going to throw a couple of things out there to eventually check off the list. I believe your local DAN Dr. could help with some of the testing 'if I remember correctly you are seeing one' . I would also recommend seeing the local Dr. I recommended to you previously. With three kids, you need someone closer to home and to be in front of more regularly to problem solve on behalf of your kids. The particular Dr. in NJ was recommended by the local Lyme support groups. He has also helped one family tremendously, not posting to forum and with a similar situation of all three children 'Lyme/Pandas'. I would be happy to put you in touch with the mother for support and perspective on Dr. They also saw Dr. Jones too.

 

O.K. here is the list of issues that might be holding back from potential success and of course the worsening of symptoms could be a herx.

 

 

*There might be one or more viruses holding him back. You could do a viral panel through DAN. You could do ART testing for viruses. We did test for viruses via both blood work and ART... I have 4 viruses and probably why I suffer from fatigue. Our twins suffer from extremely high Coxsackies Titers (our LLMD is finding Coxsackies to be a common theme with his PANDAS like patients) and our older son has XMRV. All of us are on different anti-viral protocol.

 

*He could be suffering from mold related illness and or fungus issues. There are a couple of threads on how to test. LLM just recently ran all of the necessary testing via blood work. We did ART and are not finding mold but a potential fungus issue for me. Older DS is fine.

 

*It could be he is overwhelmed with toxins and his body is unable to process them and has HPU/KPU. Also a recent thread on this topic but implementing a detox protocol immediately might help. A couple of strong indicators for KPU: Chapped lips especially corners of mouth, white patches of skin 'not vitiligo', dark circles under eyes, aversion or reaction after being in chlorinated pools with increase in symptoms, white spots on fingernails.

 

*Potentially missing a co-infection/treating like Babesia.

 

*I can't remember if your children suffer from any immune deficiencies but it is common for those with IgA deficiencies to be slow responders to treatment.

 

*AND, of course the combo of antibiotics might not be right combo for him. We have had this happen with both Rifampin and Biaxin for older DS.

 

 

There are a few LLMDs that believe issues like mold/viruses need to be addressed in order to make progress with treatment. I hope this gives you some things to discuss with your Dr. next.

 

Hi thank you for taking your time out to give me a lengthy and informative response. If you can send me a pm with the NJ doctors name again I would appreciate it. I believe at the time I called he was not accepting new patients. I would also love to speak to the mother who saw both doctors. I no longer see a DAN doc to be honest I could not afford it with all our other expenses. I don't think we have a mold issue we had done construction a few years back and we have hard wood floors and a built in humidifier, I don't think it's an issue. With regards to viral infections lol everytime we went to pediatrician they brushed us off saying it's viral. So... I'm sure that can be an issue who treats with antiviral meds? We do seem to be getting more immunodeficient as time goes on.

sigh...i'm wiped out and don't know how to proceed without winning the lottery.

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I just wanted to ask how often the tindimax is taken. your son may be on overload. Cyst busting seems to really increase symptoms for us. We had to change our frequency.

 

We take the tindamax 2 days of the week 1/2 pill in am and 1/2 pill in pm. But, we took a break these past two weeks. Actually I stopped all meds for 48 hours and then administered 1/2 dose for several days but I don't see the benefit he is worse than ever.

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Can you explain to ne what the the Drb1*04:jufr is dr jones wrote a positive near it.

The following alleles were found:drb1*04:01, and jufr.

What dies this all mean?

Ty,

Tami

So sorry for your situation with 3 children! Ds13 just had some of Dr. S tests done and these looks like them. You can go to his website and look them up on 'Rosetta Stone Table' but they are difficult to read-son's dr. had to do a phone consult with Dr. S to figure them out.

 

Here is what it looks like based on my result readings (so could be way off):

 

DRB1*4: multisusceptible (?)/dinoflagellates (do not know what this means...)

DRB1*01: Low MSH (this can indicate mold and/or mico - and not sure what else)

 

Best wishes for your children. It looks like you are on the right track which is great! Just getting to the bottom of the problem(s) is 1/2 the battle and recoup time the other 1/2. See if you can possibly get some alone-time to sort it all out (easier said than done!). Take care and keep posting.

 

Thank you Julia! I wish your child a speedy recovery as well!

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i am not much help, but i think i live close enough to you, to give you a break some day!!! really.

 

Wow Denise thanks for the offer but I think you have your hands full too! HEres praying that we will all find some relief soon with our children healthy and well!

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Tami-

 

Don't know if I have much to offer, but I so feel your pain. I have two daughters with pandas, who have been up and down this year (onset 2.5 yrs ago). They did have strep as an initial trigger, but now can be triggered by other illnesses. We have not done IVIG, thus far, but it might be in our future. We are still dealing with the impact of strep in both of them in late April :(

 

We have explored, and treated for, lyme, for at least 4 months with multiple abx in both girls, with no results- positive or negative. I was horrified every day at the amt of meds and supplements, and the result was as if they were getting placebo! So frustrating and bewildering.

 

We are now taking a step back. I have been consulting with a few new docs (one ILADS, one not). We have begun to really think that lyme is not the issue for my kids. We have stopped the lyme treatment, weeks ago, again with no effects. My older is currently on no abx, only 12mg of zoloft, which I plan to stop next week. My younger is still on Augmentin, but if/when she stabilizes- we will stop that as well. I feel after a few weeks of no meds we can really see where we are, and give their bodies a break. I am really starting to be concerned about the unintended consequences of all these meds, with no clear picture of anything positive they are doing. Both girls still caught strep while on multiple abx- which really makes me even question the use of prophyactic abx for pandas. They got strep- it was terrible, yes- but the world did not end, and due to aggressive inflammation/ immunomodulation they are okay now. OCD is hanging around- but for the most part they are happy and able to do what they want, and life is somewhat peaceful.

 

(My kids have followed a true pandas course, relapsing to be sure, but responsive to pex and steroids, long period of remission before relapse).

 

What we have found to be of most help to my kids are immunomodulating treatments. PEX, oral steroids and solumedral (high dose IV steroids). Without these treatments, I have no idea of where we would be right now, to be honest.

 

Prior to pandas onset (2.5 years ago) I had two normal, healthy, girls, with no (and one very little) anxiety. After pandas hit, both at times have been hurtling toward the point where I did not know how long I could care for them without hiring help :( Now, I have two kids with mild ocd and anxiety, to be sure, but who have been able to enjoy most of life, and do most of what they want- in my mind- thanks to these aggressive treatments by our wonderful docs.

 

Every child is SO different- which is what makes this SO hard :(

Thank you for sharing your story with me. I'm glad your daughters seem to be doing better. I am always thinking that it's PEX that we need to do too. I am glad that your daughters are happy. Unfortunately our situation isn't the same. OCD is destroying our lives. My son is always unhappy no matter what we do. He can not allow himself to just enjoy, he is always whining, tantruming about something else. I am a wreck because I am a part of this craziness and at times I really can not handle the stress. It is so sad that I can't even leave the house to visit my sick aunt in the hospital without them screaming and crying and a million kisses and goodbyes and a million "oks" and saying i love you too just right. It's a miracle I haven't had a heart attack yet.They got strep- it was terrible, yes- but the world did not end...for me it's as if the world did end. My son used to bang his head on hard objects due to strep, now bangs his teeth on things and puts everything in his mouth. Bends down to touch the ground even when crossing the street. If I try to tell him not to do something such as stop in middle of crossing, he has to do it again. He refuses to listen to me completely oppositional. Until we had him on antibiotics he would just keep getting recurrent strep infections. I can't imagine taking him off. you spoke of prophylactic dose and getting strep, we are not on a prophylactictic dose because we never got to the point of being well enough to lower the dose. OCD is annoying but if ti's just washing hands or doing things repetitively for yourself, I think its liveable as long as you can be happy and have a life. But, when OCD destroys your life, everyday is ###### and children lose out on their childhood and innocence then it's just so damn hard.

I m really happy your daughters are doing well I pray for all our children to do well!

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Tami,

I'm in your shoes. My DS8 likely contracted lyme/bartonella when he was 5. Got strep twice three months later @ 6th birthday. So we thought Pandas. Did T&A - helped for two months. Then did pex - helped but only for 2 months. Did prednisone tapers twice - amazing response, but only for 2 months. Did IVIG last summer and had a horrible recovery - for 2.5 months. Finally found the lyme in October. Had an awesome response for the first 3 months, then stalled. So we added tindamax in April and had a horrible herx that brought us back to bad places. This, in my mind, confirms the lyme, but if his body can't handle the treatment, how do we get to a cure?

 

How much of this can you take? How many times do you ask your child and your spouse to follow you down another rabbit hole in the hopes of finding the final solution? On the other hand, we looked at home movies the other day - happened to pick a tape from when DS was 3. Both my DH and I were struck by how sharp he was, how his gears were constantly turning, how...normal...he was. The reminder of how he used to be - and who I know he is beneath the illness - has recharged me. And I have to remind myself that DS is far far better than he was 3 years ago. He's made a lot of progress. So it hasn't been a waste. Just not the entire solution.

 

I'd echo Wendy's post. Those are the next things to look at. I responded to your other post re: HLA-DR4 with some sites that might be helpful. The HPU test is a 24 hr urine catch but the test is only $70. You can probably contact the lab (PM me if you want their number) and call Dr J to see if he'll sign off on the order form. Or talk to Dr Js office on whether he feels additional blood work is called for. The "good" news is that HPU treatment (supplements) isn't expensive compared to what you've already been through. In the meantime, you might also look at a thread I started on the Pandas forum about luteolin. It sounds very promising and we may be trying it if the HPU thing isn't our answer.

 

Mold is a whole other story. But the point is, each step brings more knowledge. We are all on paths we never dreamed we'd be on. This was not in the script. But others have gone before us - and survived - and gotten well. The reason the doctors we talk about have their ideas and protocols is because others have come before us with the same stories, same symptoms, and while there's no one-size solution, there are things that help, things that can move you forward. So we keep putting one step in front of the other. It's either that, or give up (which I've fantasized about more than once). But for me, there's a little boy who deserves my very best, no matter how hard this gets. I'm guessing you have one (ok, three) of those too. Cry. Cry some more. Then take another step. And be strong again - they need you.

 

Oh I love your optimism, I am such a pessimist and I hate how I feel so weak and crumbling to pieces. I am so sad at how sick they are and I know they have no contol but then I get slapped in my face and a knife in my stomach knowing how disrespectful and unappreciative of me they are. Then I go back to being angry at myself cause I know it is the sickness. But please tell me how does he keep it together at school or camp why can't he talk to me in a pleasant manner too (just rhetorical question) lol boo hoo.

For us it was definately strep first before the age of 2 all three kids got strep and then again and again and it kept going on...low strep titers. All classic symptoms of PANDAS: seperation anxiety, urinary frequency, bed wetting, rages, sensitivity to touch, hot, cold, tags, seams oh the list goes on. I never suspected lyme I only looked into it because IVIG didn't help. antibiotics helped to an extent but never with behavior. It helped with certain tics or compulsions. But then other things replaced them but was still better. SO my daughter was positive for lyme exposure she was the better of the two behaviorally. Today it's another story, she's impossible. My son never tested positive for lyme or tic borne illness but yet he is being treated clinically for bartonella. My youngest got put on antibiotics at 15 months when I started seeing similar behaviors, seperation anxiety and demanding I do things certain way. It is heartbreaking, They all tested positve on cunningham tests.

I just don't know what to do anymore I feel helpless. If I go back to read some of my earlier posts I see at times there was a big improvement because we were in such a dark place at times. We have come back to those dark times, so now I wait for some improvement but when will this all end already!

Thank you for your encouraging words I will cry some more and then be strong..thank you and I hope your child continues to do well!

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Tami-

 

I am so sorry for what your son is going through. I completely understand the agony of losing your child to this torturous illness.

 

I guess I should be more blunt in my posting- my point was not to tell you how well my kids are doing- but to say, if you are not seeing relief- maybe you do need to question the path a little bit.

 

Two weeks ago, my dd7 was extremely symptomatic due to recent strep. She raged, and then was remorseful all day. She hit and kicked me, called me names. She said she hated her life and wanted to die. We could not get her to leave the house. She tried to run away several times. I sent my 10 yr old to my Mom's, to save her sanity.

 

Last week, she receive 4 IV doses of solumedral.

 

This week- she has her life back- for now.

 

I don't know your son's story- but, I know Lyme treatment would not have given me back my daughter this week.

 

My kids have been on full strength antibiotics for 2 yrs. This spring, while on 2 full strength antibiotics- they got strep. Makes me wonder what the point is.

 

Are you in NJ? I am too. I can pm my info if you want to vent....

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Tami-

 

I am so sorry for what your son is going through. I completely understand the agony of losing your child to this torturous illness.

 

I guess I should be more blunt in my posting- my point was not to tell you how well my kids are doing- but to say, if you are not seeing relief- maybe you do need to question the path a little bit.

 

Two weeks ago, my dd7 was extremely symptomatic due to recent strep. She raged, and then was remorseful all day. She hit and kicked me, called me names. She said she hated her life and wanted to die. We could not get her to leave the house. She tried to run away several times. I sent my 10 yr old to my Mom's, to save her sanity.

 

Last week, she receive 4 IV doses of solumedral.

 

This week- she has her life back- for now.

 

I don't know your son's story- but, I know Lyme treatment would not have given me back my daughter this week.

 

My kids have been on full strength antibiotics for 2 yrs. This spring, while on 2 full strength antibiotics- they got strep. Makes me wonder what the point is.

 

Are you in NJ? I am too. I can pm my info if you want to vent....

Hi,

I completely understood your previous post I know your point wasn't to tell me how well your daughter's are doing yet I am truly happy that they are doing better :) I do question my path all the time because I have not seen a positive lyme/bartonella on my sons labs. Yet I do understand how it hides and it is a clinical diagnosis. I know my son used to be such a sweet empathetic loving child. I know I didn't raise him to be this nasty and uncaring and unkind. So it is so hurtful for me, I am embarassed to go places with my kids I feel like a total failure of a parent. Like one of those parents who never disciplined their kids, never taught them right from wrong, never wanted to be a parent. I put my heart and every moment into them (twins) I was so happy when I had them and they were so adorable and sweet. It is crazy how they are nothing like I thought they would have been. I know it's not them so where do I turn Pandas and lyme treatment is pretty much the same only lyme is multi antibiotics. what antibiotics were your daughters on some may be resistant to strep. What doctors do you see? I do live in NJ you can pm me your info if you like.

Thanks,

Tami

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