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What made you think Lyme?


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Have any of you ever considered a toxic environment as the cause of the inflammatory immune response? I do tend to agree (because of my personal experience) with Pandas16 that the immune system is what goes haywire first and bacterial infections are secondary (that was my traslation of your post: sorry if incorrect). My personal experience since clearing up my family's toxic environment is that my family has not been to doctor for two years for our previous chronic ear infections, strep infections, sinus infections, etc. Tics, OCD, ADHD, strange neurological disorers and behavior have all improved. Maybe a toxic environment is the reason your three children who are not genetically related to you are having problems, maybe it isn't. I would just add that it at least has to be a consideration as a cause of a hypersensitive immune system. Symptoms derived from toxic exposures mimic lyme, pandas, tourettes, add, ocd. I do wonder when reading that multiple children and parents are all ill from chronic unexplained illnesses if they have ruled out the toxic air they are breathing. But, I digress....my experience is that my family's immune systems needed to heal (remove toxic exposure) and not until then, despite all antibiotics, toxin binders, and other medications, did we start to see improvement in all our misdiagnosed illnesses.

 

My simplified experience: Toxins damage the immune system, a damaged immune system causes illness.

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We do respectfully disagree.

 

These are not children that were treated for just six months of PANDAS treatment and switched to Lyme. These children have been to ###### and back too with years of PANDAS treatments as well and finally something working. These parents are tired, broke and now need to address Lyme/co-infections for another two years or longer to just get their kids well. Lyme is not an easy fix. Unfortunately, if it is Lyme/co-infections.... suppressing the immune system response may give the chronic infection a leg up and down the road potentially making the child more treatment resistant. Dr. Ann Corson talks about this very issue in her ILADS presentation from last year.

 

Anyway, wishing you all the best with wellness.

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Interesting thread and all the responses very educational... I'll throw in my 2 cents.

We initially saw and LLMD (on the recommendation of another family whose child was having similar issues to our ds). They said, on the first appointment and without any labs: PANDAS with underlying LYME. So we started treatment but did not see any marked improvement as far as PANDAS symptoms go. Labs confirmed strep, all negative on Lyme and co-infections. So after a few months, we switched to a PANDAS doc, tried steroids (which I was so afraid of, just because of the potential Lyme), and our son did beautifully. At the end of that first taper, he was back 100%. But, IT DID NOT LAST. We had re-exposures, and tried steroids again, but he never was back as in the first try. So we started considering plasmapheresis. My mommy gut told me we needed to make sure there wasn't anything "lurking" before we went ahead, I just wasn't convinced my son was "infection free", plus other family members kept getting strep. And, I wanted a second opinion before proceeding. So off to Connecticut we went to see Dr. Bouboulis. As part of his initial labs, he asked for a Lyme western blot, and after over a year on full-strength antibiotics, ds had 4 bands positive (5 needed according to CDC, but give me a break!). So, here we are pursuing Lyme treatment.

 

I would suggest you read more about Lyme, why tests are not always accurate, what the symptoms are, what it does to your immune system.

Also educate yourself about co-infections, especially Bartonella, since the symptoms overlap significantly with PANDAS.

I think unless you read a lot from different sources (to appreciate the great divide on the Lyme controversy), you will probably think, "these people are nuts, it's all a big conspiracy" That's kind of what I thought of our initial LLMD, who was convinced ds had lyme and co-infections and kept testing for it. Unfortunately, I was not educated enough and would not believe it unless I saw it in black and white on a test result sheet.

Well, I hope this helps. It's just our story but I think if I had heard someone's story before, maybe I would have stuck with the original course of treatment and NOT done steroids, which might actually have done more harm than good in the long run. Of course, hindsight is always 20-20. You have my hindsight, but every case is different, so you'll have to read and read and try to make the best decision for your child.

 

I'd like to add we live in a Lyme-endemic area, on 14-acres with woods, my husband got Lyme Disease and West Nile virus as soon as we moved in, and there are just so many Lyme cases in our community. But unfortunately, when we moved in 3 year ago, I did not know what I was facing. How I wish I'd known then what I know now!

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Pandas16,

 

These are interesting facts, and it sounds like you've really done your research. In our case, we've never given our son an antibiotic from the tetracycline family and he has improved greatly on the Lyme protocol. And he does have a history of distinct flares with strep exposure. So I don't think its anti-inflammatory properties of the medications that's getting him well. I can understand if you don't want to pursue Lyme treatment for yourself, but I don't understand advising someone else to not even look into it. I think its important to remember that just because a certain treatment path has worked for you, doesn't mean it will work for everyone. We're all different. From my perspective, the more testing the better.

Edited by mama2alex
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I think it all matters to a child with multiple infections/viruses: neurotoxins, toxins from bacterias - endotoxins/exotoxins, environmental toxins, eliminating stimulants, retraining immune response, protection from new exposures, addressing leaky gut, alkaline verses acidic PH balances, anti-viral protocol and eventually building immunity. I could go on.

 

We have positive results for Lyme/Bartonella/Babesia/HHV6/Coxsackies/Immune Deficiencies/Strep Pneumo Deficiencies, Low RBC, etc and thankfully the low WBC and strep titers are within normal range now... There is probably more that we haven't checked for yet or some things that are falsely negative. It is vitally important to turn down the hyper immune response and decrease inflammation. We are heavy, heavy into detox to help with ongoing inflammation.

 

Our older son has one mild symptom right now. We anticipate treatment for another 3 to 6 months if nothing changes. Then the true tests begins when he is rotated down and off antibiotics. He had 103 temp just two nights ago, a fever all day yesterday and still home from school today.. there has been no increase in symptom. It been a long hard battle.

 

-Wendy

Edited by SF Mom
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Ziva-

 

I haven't read the posts, but read your question. We started looking at TBI when our "alphabet son", then dx'd with PANDAS in late 2008, was plateauing & spiraling after about 8 weeks post 2 hd IVIG. We did the Igenex testing at the urging of 3 different mothers on the forum. We are about 6 months into lyme tx. I wish you could see the bartonella rashes the continue to appear and become more & more abundant & pronounced. This means we are pulling out the bacteria and it is active. NEVER saw this before. Since we started the bartonella tx he is ticcing vocally/facial most of the time.

I don't think the babesia bug is naturally at home in red blood cells--my son was positive on the most sensitive FISH test used for detecting babesia--there is no denying the results of this test. The symptoms most likely caused by this protazoa are no longer happening in my son since we successfully eradicated it. Our son was not a "classic" sudden onset PANDAS or lyme disease case.

 

Hope this helps.

 

Dawn

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Hi everyone,

 

I am feeling the need to comment, as I think I see both sides of this "disagreement" (I am glad to see this stuff being talked about civilly this time), however I think that the forum, lately, only represents one viewpoint.

 

Full disclosure: I have two daughters with pandas. I have tested them for lyme, and their results were similar to each other, and not concrete either way, IMHO. So we have seen an llmd, and done a lyme protocol with them for about two months- with absolutely NO change (no herxing, no improvement, no rashes, etc). So I want to carefully put my thoughts out there, and am interested in polite discussion.

 

I would certainly recommend anyone suspecting pandas (or lyme) to do thorough testing for their child. I also would recommend them to see several doctors with different specialties with that child. Unfortunately, none of these tests are conclusive, and NO doctor has all of the answers. (period)

 

I certainly believe in chronic lyme, have known about it loooonnng before I knew about pandas, before I even had kids. I do, also however, realize that there are many illness out there, many autoimmune disorders that have nothing to do with lyme (in fact strep is thought to be a culprit in several). PANDAS, as defined by Sue Swedo, is an infection triggered (strep to be precise- although now that might be opening up a bit) autoimmune disorder, with a remitting and relapsing course. There IS such a thing as pandas, which is the same mechanism as rheumatic heart disease and sydenham's chorea (which has been around for a loooonnnng time).

 

So why am I saying this? Because while I DO think it is very important to suggest to every parent to test for all types of infection- to me the advice on the board these days implies that there is no such thing as PANDAS. That if your child relapses, or does not remit easily- it is because they have lyme. I just think we need to be WAY more careful than this- it must be SO confusing to newcomers (and I fear we may have lost lots of input from some very wise pandas parents along the way).

 

A few thoughts:

 

On a forum like this, we cannot possibly know everyone's stories. Of course it is VERY likely that there are a percentage of kids here who are NOT pandas, and some on the lyme board that are NOT lyme, but the parents are searching for answers and hope. Probably some of these kids did not fit the criteria. We became very loose here, poo pooing sudden onset and other things. While I am sure there ARE pandas cases where the sudden onset is missed, this is the hallmark of the illness, so maybe we shouldn't have been so quick to accept that all of these kids have pandas.

 

The other issue being- pandas is thought to possibly remit without medical intervention over time, and kids can relapse much later. So- being on the fence about pandas/lyme- I feel I will be a bit skeptical of anyone touting an "answer" to pandas, until they have had longer term remission (at least over 3 years).

 

So- my kids both had sudden onset at same time as positive throat culture. They were both low anxiety, low maintenance, robustly healthy, neurotypical kids until two years ago. NOTHING I could point to whatsoever prior to onset. Then they got strep and overnight things went wrong, and within a few weeks they were different kids with MAJOR issues. They have presented primarily with ocd (which causes them high anxiety, sensory issues, temper tantrums, anorexia, sleeping issues). It was a total nightmare. We were lucky to get treatment for them relatively quickly. They initially remitted with antibiotics, then steroids, and eventually we did pex with both. They had about a year remission after pex- fairly perfect for a year. Then they had an illness in December and we started this rollercoaster again. They are doing great again (although not perfect yet) thanks to iv steroids.

 

For those who are seeing successful lyme treatment- can you share:

 

Did your child fit the criteria of pandas to start, including positive strep culture and sudden onset of symptoms (tics, ocd, adhd, etc)? Did your child have accompanying physical symptoms? What was your child's health (physical and mental) since birth to pandas onset?

 

 

How is your child doing now? How long did it take to get here? How long has remission been?

 

 

I hope this does not sound offensive, or confrontational to anyone- it is certainly NOT my intention. We are all on a journey (unfortunately) to help our kids, and we all are smart enough to learn from each other. I just felt I needed to publicly agree with PANDAS 16, and hope it spurs on some more thoughtful conversation. My kids have been able to maintain a relatively joyous, normal life, thanks to PANDAS treatments : steroids and PEX. So- I want to be sure that other parents are not afraid to try these treatments if their child has pandas. I also wish we, as parents, could flush out some differences between pandas and lyme (symptoms, reaction to treatment, course and length of illness, etc). I feel a survey is needed- but don't necessarily think I can design one :)

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Guest pandas16

Thanks D.C. Mom. I guess that's how I feel too. I feel like I achieved more or less complete PANDAS remission for 11 years thanks to PANDAS treatments. IVIG and high dose steroids. 11 years!! I found so much serenity on this forum because I knew people were going down the same road as me, getting the same treatments and getting well. Why BECAUSE THEY KEPT GOING ON THE SAME PATH and not giving up after 6 months or 1 year. Keep in mind it took 2 years to get me well, my case was so severe. Now it's just frustrating. Now all it is is "chronological neurological" lyme being shoved down your throat whatever you post. I guess What I really want to see an absolutely normal Cunningham Test result post Lyme treatment, then I'll be on board- that will be science and that will convince me.

 

There aren't even any clinical trials for IVIG and Lyme and it took 12 years to finally get to a phase III clinical trial with IVIG and PANDAS.- (Something that really works) Fixing the immune system works otherwise there wouldn't be a clinical trial. Has anyone except me and momtopandas achieved remission for 11 years??? I think a survey is a great idea. I'd like to know, please post how long your child has been in complete remission with Lyme treatment- complete remission meaning absolutely normal Cunningham test results.

Edited by pandas16
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My DS7 son was diagnosed PANDAS earlier this year.

 

He had a tick in his scalp last (for about 12-15 hrs) last fall.

 

During my visit with Dr.K I asked about getting my son tested for Lyme, and he asked if there was a rash at the bite spot. There was not, but it was on his scalp.....so I'm not sure if I would've even seen it.

 

My thought was why not rule that out since we had to go in for a blood work up anyway. But Dr.K said no need.

 

Do you think I should push for the test?

 

How would I know if there's any Lyme involment if we don't test?

 

 

Just my humble opinion: I think in your situation, if I was you, and my dd6 had a tick on her head for 12-15 hours last Fall, I would do the intital test for Lyme. I think if you don't, it will be in the back of your head forever, nagging you.

I am not testing my dd6 for Lyme. I will tell you why I am not thinking Lyme: We have a strep timeline history, following a strep infection when my dd was 2 yr. 3 months old, that was treated w/amoxicillian, that I never followed up on, and everything pandas happened after that (also had exposure to strep as an infant in daycare, then jump off the head growth chart, and unexplained fevers- could have been from excessive vaccines, though, whacking out her immune system.)

We live in a non Lyme area, always have. My dd has been very sheltered- never out camping, in the woods, we have never owned a family pet. There is no way she has ever had a tick on her. My DH and I are in our mid-40's, have never remembered a tick bite, and have no symptoms whatsoever of Lyme. Neither does my 13 yr. old son, or other dd4.

We've had no herx with antibiotics, nor an awful 'herx' that seemed unduly with IVIG- just the brutual saw tooth of the first IVIG.

Sometimes on this board I feel I might be re-miss, or maybe others think I'm 'fooling myself.'

But it's my intuition and belief, we don't have Lyme.

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I see both sides of this issue as well. I do understand why some don't test for Lyme (S&S for example, makes perfect sense). We all have to use our own mommy's intuition and do what we think is right for our own child. And I think people tend to see one another's situations through the lense of their own experience, which is human nature. But here we have a boy who had a tick on his head for 12 - 15 hours, and the mom is being advised not to waste the time or money on Lyme testing. He has symptoms of Lyme and PANDAS (because they overlap), so why on earth wouldn't she test for Lyme and see a Lyme doc for an opinion? I know people have strong feelings about this as an overall issue, but we need to keep our eye on the ball, which is helping new members get help for their kids.

Edited by mama2alex
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Guest pandas16

Why? Simply because Dr. K is her doctor. Dr. K has A LOT of experience treating PANDAS, he has gotten kids well treating PANDAS and he said no. He has the PHD and he's helped hundreds. Its hard because we've all been to doctor ###### but at one point you just have to try and trust and listen again. This woman was so lucky to find a doctor who understands the disease better than anyone on this forum except for Dr. T. He said don't worry- don't worry.

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