Swollen Groin Lymph Node ?

[Suzan]

dd8 started KPU treatment about two months ago {edited the date, I realized I was a month off}. She has increased rashes under her arms and large pimples randomly around her body. She has also started getting ankle pain (seems more like easily twisted ankle). Three days ago she complained of sore groin and she has 2 bumps there.

 

I can't press around much because it's so sore so I can't tell how hard they are but they seem like nickel sized knots. Has anyone had experience with this? I am assuming it's swollen lymph nodes or something like that. I have tried to increase detox efforts. I'm not sure of the danger so not sure how soon to take her to the doctor or what they would even do if I did take her.

 

She is on KPU treatment because of her lack of response to lyme treatment and overwhelming KPU symptoms list even though her KPU test was normal.

 

Susan

Edited September 18, 2011 by Suzan

[SSS]

Hi, I just wanted to add that our Dr. prescribed me a supplement by Penkana called

ITIRES.

It is a lymphactic drainage remedy.

When I called to order it, the woman at the company said: Oh yes, your Dr. really likes this rememdy for the lymph drainage.

HTH, I am taking it.

[LNN]

You're a few weeks ahead of us in KPU treatment, but yes, we've seen the same things. Last week (Week 5) DS9 developed swollen lymph nodes in his neck and groin and complained of foot pain, ankle pain. The left side was particularly swollen. He also developed "bee-sting" sensations in his legs and feet for about 3 days. And he too has sand paper bumps on the backs of his arms and thighs. About 5 days after all this started, he also came down with a cold (sister had it a few days before him and I have it now). So hard to separate what's what. The cold is now gone and so is the lymph swelling. Foot pain is still there a little but better. No more stinging sensations. The skin bumps are better but not gone.

 

I did bump up the chlorella a bit. I also found a place locally that teaches chemo patients how to do lymphatic massage - and they take insurance (what a novel concept!) About $100/visit. But the woman said one possible "side effect" is that it stimulating lymph can cause a flair of symptoms so she wanted me to run it by our LLMD first. He said yes, probably will cause a flair and it was up to me. Am thinking I may go in a week or two and learn how to do it and maybe by doing it every day, it will prevent future swelling and help the immune system long term. IDK.

 

LLMD also said (as did Jodie) that metals could be a factor behind some of this. DS has tested slightly elevated for mercury. I need to do more research before I move forward on this, because there's tons of conflicting info out there and all I walk away with is the knowledge that chelating improperly is worse than not chelating at all. So I'm in research mode.

 

Anyone have any good input on chelation?

[NancyD]

Laura,

 

Need to make sure you have no yeast problems before starting. There are some chelators that are more gentle (and natural) than others. We started with high doses of C and ALA. At the time I did not notice any difference. Then we moved on to DMSA and a couple years after that EDTA. We pulled a great deal of mercury, tin, and other metals. I did notice DD was more creative and had higher level of thinking immediately following. May want to check articles by Amy Holmes, MD.

 

You're a few weeks ahead of us in KPU treatment, but yes, we've seen the same things. Last week (Week 5) DS9 developed swollen lymph nodes in his neck and groin and complained of foot pain, ankle pain. The left side was particularly swollen. He also developed "bee-sting" sensations in his legs and feet for about 3 days. And he too has sand paper bumps on the backs of his arms and thighs. About 5 days after all this started, he also came down with a cold (sister had it a few days before him and I have it now). So hard to separate what's what. The cold is now gone and so is the lymph swelling. Foot pain is still there a little but better. No more stinging sensations. The skin bumps are better but not gone.

 

I did bump up the chlorella a bit. I also found a place locally that teaches chemo patients how to do lymphatic massage - and they take insurance (what a novel concept!) About $100/visit. But the woman said one possible "side effect" is that it stimulating lymph can cause a flair of symptoms so she wanted me to run it by our LLMD first. He said yes, probably will cause a flair and it was up to me. Am thinking I may go in a week or two and learn how to do it and maybe by doing it every day, it will prevent future swelling and help the immune system long term. IDK.

 

LLMD also said (as did Jodie) that metals could be a factor behind some of this. DS has tested slightly elevated for mercury. I need to do more research before I move forward on this, because there's tons of conflicting info out there and all I walk away with is the knowledge that chelating improperly is worse than not chelating at all. So I'm in research mode.

 

Anyone have any good input on chelation?

[LNN]

Thanks, Nancy. The thing that rattled me most was that I listened to an hour audio interview with Andrew Cutler and read the first 40 pages of his book Amalgam Illness on google books. He is adamant that using a chelator only once a day does more harm than good. He doesn't feel chlorella is a strong enough binder and advocated ALA and/or DMSA every 3-4 hours, even in the middle of the night, for many months and possibly years. He focuses on adult poisoning, not kids or lyme or kpu and I'm not sure how any of that affects the overall approach. Our LLMD Rx'd DMSA once/day but without having a form grasp on the topic, I haven't picked up the script yet - at $3/pill (with insurance) it's pricey and I don't want to screw up the good place we're in right now. I do know that when we did one large DMSA dose at the start of our heavy metals challenge, I saw some uptick in agitated behavior the next day. LLMD said he hadn't had anyone else report that before but DS is well known for not responding the way others do. So I can see a need to address mercury in our situation but only with a careful plan (even DH is on board, which is both helpful and scary). I could probably bring myself to do ALA several times/day (currently only giving in the a.m), but even that, with school and the bus ride consuming 8 hours, no way is 4hr intervals practical. I'll see what I can find by Holmes and probably come back to you with many more questions. (oh, for the good 'ol days when I worried about "just" Pandas!)

[SSS]

LLM- if you think Lyme is controversial, wait until you delve into chelation theories. Yikes.

I did follow Andrew Cutler threads/people and learned a lot about it. I have to admit, his 1/2 life theory of using chelators has stuck with me.

I did 5 weekend rounds of oral DMSA only with my daughter December 2010. Started after school, and gave the DMSA every 4 hours around the clock (waking her up) until Monday morning.

So, 3 days on, 4 days off. Supplementing with Zinc, vitamin C, other minerals.

 

After our 5th weekend, all he!! broke loose, and we came to PANDAS. Part of me believes it dislodged some bacteria in her (a biofilm with mercury and bacteria?)

 

Anyway, if we get to chelation again, for both of us, since lead is not one of our metals, but primarily mercury, I would like to use DMPS capsules, every 8 hours (Andrew Cutler says the half life of DMPS is longer- can dose every 8 hours) with the Friday after school/all weekend/ 3 day on, 4 day off theory.

 

But, of course, this may all change as we go forward.

[lismom]

I just wanted to ask out of my own curiosity, and if you guys don't have the time or energy to respond I'll understand, but what is the defect that causes the protocols you and your children are going through. Is it the immune system being immature in some younger kids? Is it a defect that prevents the immune system doing what it should? Do things get stuck and not leave the body? Thanks, Kathy.

[Suzan]

Hi Kathy, I'm not sure if this is what you mean but for us and sorry if you know all this already but we were all diagnosed with lyme (me and my two daughters) and probably bartonella. My older dd and I started our meds and herxed and symptoms morphed and got better on many levels, basically what I expected from treatment. For my 8 yr old, she never really herxed and never really changed any of her symptoms even though she was on a really good protocol for lyme. In trying to figure out why, I came across KPU and found that she fit that symptoms list very well. Dr. Klinghardt says (forgive my huge paraphrase) that lots of lyme sufferers can develop KPU (pyroluria) which is basically a severe zinc deficiency where heavy metals have replaced the zinc in your body.

 

Also, our neurologist does say that viruses can get stuck and not get cleared properly and can cause all sorts of symptoms and problems. It can be hard to get well with these things in your body.

 

As far as I know my dd does not have any official immune deficiency and I hope that once she replenishes her zinc, her body will start to work properly and she can finally process the lyme and get well. I personally am assuming that the lyme is the underlying cause that is creating the environment within the body to become sensitive and not work properly. But maybe the others will have some better or more interesting ideas!

 

Susan

[LNN]

Kathy,

My theory - and it's only a theory that will evolve - is that my son had KPU/pyroluria first, then lyme. In our case, it may be a genetic, life long condition that will always need to be treated with a zinc supplement. In our case, DS had odd things as a toddler. An eye blink for 3 days when he was 2, odd episodes of mood dysregulation a few times a year that would last about a week, inability to do age-appropriate puzzles, small delays/deficits that only a neurotic mom would worry about. Nothing that screamed we had a problem, things I may have downplayed if he were my second child and not the first. It's the stuff you sometimes see other Pandas parents talk about - sudden full blown onset with strep, but oddities in toddlerhood that stayed in your memory. He was always the first kid to catch a cold and the last one to get rid of it. My son also had a very odd reaction to zicam once and developed choreiform movements that stopped as soon as I stopped the zicam (zinc). And I needed zinc supplements as a kid. So when I read about KPU, it really struck a chord and I wasn't surprised when he came back positive.

 

My working theory is that he has always had pyroluria and as Susan said, Klinghardt speculates that if your body doesn't have enough zinc, it grabs heavy metals as a poor substitute. So as we gave flu shots (which continue to have thimerisol in them) and as he was exposed to mercury, his body stored it instead of eliminating it. When he contracted lyme at the end of kindergarten and then strep at the beginning of 1st grade, it overwhelmed his body and sent his immune system into disarray. He does not show an innate immune deficiency. I'm speculating it's the genetic KPU that makes it hard for him to fight illnesses. When we got aggressive with lyme treatment (tindamax), DS was overwhelmed and couldn't handle it. It told us something at the base level was wrong. We tested HLA DR genes and minerals and KPU. KPU was the one that held an answer for us.

 

Now that we're giving the KPU doses of zinc supplement, his immune system is working better but he may also be dropping some of the mercury he's been storing. Last week, he had some symptoms that suggested that might be happening. So in my story, I think its KPU first, with possibly some mercury problems developing with it, then lyme, then strep, then years of investigative work and only partially successful attempts to unravel it all. I can only hope we've gotten to the source of the problems and can start to address those. Not sure I have the strength to learn about and treat much more. As S&S said, each one of these things is more controversial than the next. Pandas is at least discussed in the Saturday Evening Post. Lyme is at least recognized and hotly debated. KPU and metals are relegated to the fringe of the fringe. The old me is thinking I've gone completely over the edge. But my son is better than he's been in years. I'll take that trade off any day.

[Suzan]

I can only hope we've gotten to the source of the problems and can start to address those. Not sure I have the strength to learn about and treat much more.

 

 

LLM, I totally agree! First I thought it was her seizures, then I thought she was her gluten intolerance, then I thought it was sensory processing disorder, then pandas, then lyme, then kpu and viruses. I hope this is it that will help resolve it all. With each one, she improved and then went back to her previous norm.

 

You and I are an interesting comparison between KPU then lyme or lyme then KPU. Since dd8 came back KPU negative but responding to treatment and I have lyme, I'm assuming she does not have puloria. I hope that is a correct assumption since I don't plan on continuing the treatment after this appears to resolve. I wonder if I should be doing anything else there to be sure?!

 

Susan

[NancyD]

Wow, now that I read through the symptoms of KPU, my DD shows almost all signs. We know she has had high levels of heavy metals in the past and has undergone chelation. She has ALWAYS had poor dream recall (in fact, could never recall a dream from the time she was little) and poor breakfast appetite, occasional nail spots, pale skin, emotional lability, moodiness, stress intolerance, knee and joint pain, explosive anger, depression, etc. It seems high % of individuals with ASD or Lyme have KPU. Will have to see if we have tested for that. And now that you mention little pimples on the skin, she has always had that on her upper arms.

[LNN]

Nancy - Don't you hate these "oh crud" moments when you read something you think is going to totally not apply and see your own story in every sentence? In reading Cutler's description of who's a good candidate for mercury poisoning, I see myself as a walking mercury time bomb! Won't bore you with why, but so many "yes" check boxes that DH was floored. It makes you wonder if we're just on the bleeding edge of medicine, learning things ahead of main stream doctors, or if we get so PTSD that we keep digging and can't let sleeping dogs lay.

 

Susan, for lots of reasons, based on family health factors, it makes sense that it would be a precursor for my kids, not caused by lyme. But would love to be wrong. And don't think this is the case for everyone. Let's hope your DD gets to leave this behind her.

[Suzan]

Nancy, That was my experience with dd8 when I read the symptoms. 2 weeks after starting CORE treatment, not even full dose, she started waking up and telling me about her dreams. It was so cool. She did test in the normal range for KPU but we decided to treat anyway due to the overwhelming symptoms.

 

This was her list from the symptoms list

 

Light / sound / intolerance

Pale skin /

Environmental and food allergies

Poor breakfast appetite

Emotional liability

Explosive anger

Attention deficit / ADHD

Poor dream recall

anorexia

skin eruptions, fungal infections,

Thin fine hair

Anal itch/

Stress intolerant

Difficulty sleeping

[NancyD]

YES, I do hate those "oh crud" moments!!

 

Nancy - Don't you hate these "oh crud" moments when you read something you think is going to totally not apply and see your own story in every sentence? In reading Cutler's description of who's a good candidate for mercury poisoning, I see myself as a walking mercury time bomb! Won't bore you with why, but so many "yes" check boxes that DH was floored. It makes you wonder if we're just on the bleeding edge of medicine, learning things ahead of main stream doctors, or if we get so PTSD that we keep digging and can't let sleeping dogs lay.

 

Susan, for lots of reasons, based on family health factors, it makes sense that it would be a precursor for my kids, not caused by lyme. But would love to be wrong. And don't think this is the case for everyone. Let's hope your DD gets to leave this behind her.

[Suzan]

Whoa we are in the thick of it now with dd8. Every day now she has another pimple lesion. Today her tummy hurts, her ankle hurts. She is in misery. I told her "I'm sorry, I will cut back on the KPU treatment." She said "No, I want to keep going. I can handle it." She is ready to get better. I am just amazed at how much this pill is moving things for her. She took an epsom salt bath and got in the sauna. The lymph node is getting better. One of the lumps is gone and now there is only one left.