Found these comment interesting regarding Lyme et al

[sf_mom]

• 
   
  
• "The hardest Lyme patients to treat are those on psychiatric medications. Klonopin is among the worst for making treatment more difficult"
  
• "Microbes exist in communities. Lyme surrounds itself with Staph, Strep, Mycoplasma, and molds"
  
• "Symptoms are rarely caused by the Lyme spirochete. Joint pain is often the result of Rickettsia, Mycoplasma, or Clostridia. Gut issues are often related to parasites or Babesia. Borrelia alters the immune system and opens the door for other infections but does not generally create significant symptoms itself"
  

 

http://betterhealthguy.com/joomla/blog/242-a-deep-look-beyond-lyme

[JuliaFaith]

Thank you for posting this 'SF Mom'. It is full of interesting information and gives me an idea of why we are doing some of the treatments and hopefully will do some more because of they are needed. Keep forgetting to give son cistus (rock rose) tea! Hopefully, this gives others some clues as to where they should be going next in terms of treatment as well. Have bookmarked it so I can read the entire article and will probably print out for future reference.

[Iowadawn]

• 
   
  
• "The hardest Lyme patients to treat are those on psychiatric medications. Klonopin is among the worst for making treatment more difficult"
  
• "Microbes exist in communities. Lyme surrounds itself with Staph, Strep, Mycoplasma, and molds"
  
• "Symptoms are rarely caused by the Lyme spirochete. Joint pain is often the result of Rickettsia, Mycoplasma, or Clostridia. Gut issues are often related to parasites or Babesia. Borrelia alters the immune system and opens the door for other infections but does not generally create significant symptoms itself"
  

 

http://betterhealthguy.com/joomla/blog/242-a-deep-look-beyond-lyme

 

 

A Big "AMEN" to the Klonopin---Nasty results here wiht ds12. Dawn

[LNN]

Wendy

Thanks for posting. Always good to get his perspective, especially on things he may have changed his thinking on. I grinned inside when he mentioned Pandas. This never would've been on his or any other LLMDs radar a few years ago. It's because of the parents who have gotten media stories out there, conference presentations, parents pushing researchers to publish and launch more studies, and the trail of parents heading into LLMD offices telling stories that emphasize how much overlap there is between disease symptoms. It's not like there was any single thing that did it, tho some moments were bigger than others. But a series of bigger and smaller steps that are changing the landscape. I feel like these forums have been incubators for ideas. Pretty cool.

 

Also good to use these bullet point kind of summaries to see if there's agreement with what your own LLMD is doing - or not. A good place to start a list of questions prior to your next visit.

 

I do however, have to agree that there do seem to be contradictions in here. Maybe there wouldn't be if you were there in person and heard everything in context. But it's not the first time I've read his stuff and walked away confused. I also wish there were more "seems to be" kind of comments rather than absolutes. His statements about 90% of patients having this or 100% having that just bother me. Reminds me of another eastern European doctor we know who says that lyme is such an insignificant factor in Pandas that it's not even worth testing for. I feel much better when doctors seem less sure of themselves. And oh, if he only he had kids or grandkids of his own, a few picky eaters and moody, stubborn rugrats, so he could do reality checks on some of his treatment notions. No matter how spot on he may or may not be, some of his ideas are just not practical in my house. Maybe it's just me. Just venting a bit.

 

Still gave me things to think about...thanks.

[sf_mom]

Laura,

 

I have had so many thoughts since reading your post late last night. I've got to say.... I'm so jaded from the last couple of years and have a hard time trusting anyone Dr.'s perspective fully. If it wasn't for this forum and other people's experience our family would not be where we are today. It is the combined efforts and 1,000s of hours spent by all of parents trying to figure this out for their children to has pushed 'our' recovery along to this point. I actually cringed when I read the comments on PANDAS in the attached link. I am still angry at the denial by some for the lack or inappropriate testing required in advance of a true PANDAS diagnoses. I unfortunately breeze by many of the comments in the attached link perhaps wrongly or rightly feeling some points don't apply to our situation. I guess I draw the line at drinking my own urine.... but perhaps I will be convinced otherwise in the future if we stop having success with treatment. I mean flying off to visit with 'John of God' has crossed my mind and do not rule it out as a option in a moment of desperation (kinda kidding but not really).

 

If there is one thing I've learned in this process.... it is to trust my mother's and other mother's instincts over anything a Dr. has said or claimed.

 

I do like the bullet point information provided by BHG and summary of what these Dr.'s have said at a particular conference. In contrast some of the lengthy medical articles are hard to understand and leave my head spinning. However, I do believe some of the information is presented from an understanding of these Dr.'s philosophies without the back drop of explanation. You would have to know that Dr. K does not often resort to antibiotics use in his treatment process of Lyme to understands why he might say something like "classical homeopathy never works". He is at the forefront of homepathy and treatment of Lyme... literally changing the way most view and treat the disease. We could spend hours just parsing his views.

 

Anyway, BHG has been invaluable resource for us and even helped with understanding/directing us with my husband's health. We are fortunate to have him as a neighbor. He is bookmarked on my computer and potentially many Dr.'s as a reference point for treatment. Even potentially driving or shaping views on MCIDS similar to this forum for PANDAS. THANK GOODNESS FOR THE INTERNET.

 

-Wendy

Edited August 15, 2011 by SF Mom

[MichaelTampa]

A few of my thoughts on this:

 

- First off, this was an excellent conference, I was there. This looks to be a pretty in-depth summary of what was presented. The DVD's are available for purchase and can be well worth it. While the bullets are great, there is nothing like listening to the actual presentation, as certain points will be relevant to your situation and level of understanding that will not make it to someone else's list of what was said.

 

- The comment on homeopathy was in context of how a number of things used to work very well a couple/few decades ago. People could come in with a problem and acupuncture or classical homeopathy or something else could give a really great treatment, miraculous almost, and now these treatments just do not have the impact anymore. It was not a rant specifically on classical homeopathy, but more pointing out from his experience/perspective, being there, seeing that things really have changed in medicine and the old treatments do not do what they did anymore. The world has changed, and it is worth acknowledging that. At least here, he did say "rarely", so he is not denying the difference it has made for Stephanie2's kids.

 

- Symptoms are caused from many things. He does think autoimmunity is a big part of it. But clearly, he does not think that is all, as he talks about how CCSVI causes major neuro symptoms, and this is caused by biofilm clogging up neck veins. Count me as yet another who has now tested and found myself with this blockage, and eagerly anticipating angioplasty for it in about 4 weeks. Also, fungus will respond to EMF's (not a big issue decades ago, yes, the world has changed) by generating massive neurotoxins. These are two examples where it is not just the autoimmunity causing symptoms. This is where the context just is lost, but it is not a contradiction even here, he is blaming the fungus and the biofilm and the autoimmunity (and perhaps more), but the spirochete itself, not so much. This is where the idea of living with the infection and dealing just with autoimmunity can be very problematic over the long-term. One thing to live with spirochete infection, but when you add the biofilm and the fungus, and allow parasites to grow and collect heavy metals (that everybody is breathing, eating, and drinking, sorry to say), then you will have clogged veins which will cause serious oxygenation issues, and you will have neurotoxins when exposed to EMF's, and the heavy metals will cause additional symptoms when exposed to EMF's. This is why he believes the infections must be treated.

 

- Regarding treatment options, I have heard one of his nurses joke about compliance he gets from his patients, compared to others in the office. Perhaps that comes from taking the worst-of-the-worst, hard-up cases, so, you get to him, you'll do what he suggests. Yes, some kids/grandkids might help with understanding the reality, and might push him to come up with friendlier treatments, and we all would benefit from that. Reality is, for his actual patients, he probably does not need to. Auto-urine therapy, by the way, can be done by drinking but also by spraying in the nostrils. Adding liquid iodine (SSKI) will preserve it for a while, though saving some new stuff can still be helpful every couple/few days. Dr. K. recommends both, but acknowledges the spray version can be very valuable.

[LNN]

Michael - best of luck with surgery! Sounds scary - I hope it pays off with many positive benefits! Thanks for rounding out his comments and adding perspective. You're right. It's easy to forget his client make-up - the very sick and predominantly adults. But when he talks about autism, it's hard for me to imagine how parents get their kids to cooperate with some of this stuff. It's just mind boggling. I'm on cloud 9 just to be able to get 30 chlorella pills into DS every day.

 

Wendy - didn't mean to upset with anything I said. I was only glad to see recognition of some of the things we've all dealt with, since others broaden their views based on what Dr K says. I grinned and you cringed - there must be a disconnect - I will have to go back and re-read.

[sf_mom]

Laura,

 

Not upset at all... Your well thought out perspective and well written posts always make me smile.

 

I cringe from the war wounds of debate regarding PANDAS/Lyme. Sometimes I feel like us mother's collectively understand this better than many of the Dr.'s. I have a problem and 'maybe' it is with the word PANDAS..... for many it is so much more than just strep. AND, there is always that ringing reminder in my ear of a noted nay sayer of PANDAS, also a Dr. K telling me on the phone Strep would never cause these symptoms. I argued with that particular Dr. for over an hour on the phone and boy was I wrong when it came to our family.

 

Hopefully, that gives you a little insight for my need to cringe. By the way, congrats on the 30 chlorella pills... I'm still at 20 pills a day myself.

 

-Wendy

Edited August 15, 2011 by SF Mom

[JuliaFaith]

Just a thought after reading everyone's threads. Some of these dr.'s that presented have/do have either themselves or family members that have been very sick which maybe has been a motivator for them to seek a treatment that works, just as we are doing for ourselves/family. Also, have met a few patients of some of these doctors and they believe they would have died if they had not seeked out and agreed to treatment, so Michael is correct in stating that some of the patients are very ill (two of them moved a long ways to live in the area where the doctors are located).

 

Thank you for the thought-provoking discussion.

Edited August 15, 2011 by JuliaFaith

[LNN]

I cringe from the war wounds of debate

 

By the way, congrats on the 30 chlorella pills... I'm still at 20 pills a day myself.

-Wendy

 

Ok, I get the cringe then. I posted on the Pandas forum last week that the reason I like PANS (regardless of what the "A" officially mean - I've seen "acute" and "autoimmune") is that there's no "S". This not only opens the door for multiple infections but also for environmentals. What I also like about the new name is that it invites broader research and it in a way unites three worlds - lymeland, autism and Pandas. The groups have many differences of opinion but it seems like we're all chasing the same basic things with the same basic premises and sharing some of the same tools. Some of the arguments seem like red herrings.

 

Yeah, the pill war went much better than expected. 10 days into KPU and so far so good. Days 3-4 were really bad and I was ready to quit. But then it got better. Holding my breath. The dreaded week #3 will be the first week of school.

 

LLMD appts next week. Debating whether I want to put my DD6 on the chlorella too. I think she'd definitely benefit, but not sure I'd get compliance. Hoping I can get the green light to give fewer pills. She's only 43 pounds. Like milk thistle, this stuff has some really good effects.

[JuliaFaith]

 

Ok, I get the cringe then. I posted on the Pandas forum last week that the reason I like PANS (regardless of what the "A" officially mean - I've seen "acute" and "autoimmune") is that there's no "S". This not only opens the door for multiple infections but also for environmentals. What I also like about the new name is that it invites broader research and it in a way unites three worlds - lymeland, autism and Pandas. The groups have many differences of opinion but it seems like we're all chasing the same basic things with the same basic premises and sharing some of the same tools. Some of the arguments seem like red herrings.

 

Yeah, the pill war went much better than expected. 10 days into KPU and so far so good. Days 3-4 were really bad and I was ready to quit. But then it got better. Holding my breath. The dreaded week #3 will be the first week of school.

 

LLMD appts next week. Debating whether I want to put my DD6 on the chlorella too. I think she'd definitely benefit, but not sure I'd get compliance. Hoping I can get the green light to give fewer pills. She's only 43 pounds. Like milk thistle, this stuff has some really good effects.

I really appreciate your honesty and definitely agree with your PANS points. My ds never had strep but was diagnosed PANDAS so agree wholeheartely with your opinion on this. Which made me wonder why and what was different with him versus other kids on the PANDAS forum because he presented so differently. Thanks for mentioning it.

[sf_mom]

No, I actually wasn't referencing you.... The history of the debate goes much further back then your arrival on the forum. I happened to be beating a loud drum of chronic infection and not so eloquently at times on the PANDAS forum 'repeatedly'. It caused a lot of criticism both on and off forum and even lost a couple friends over my postings. BUT, we managed to help a couple children along the way that were deemed 'just mentally ill' so it was worth it. I think the message is finally out there but I still cringe by what appears to be a tight definition of PANDAS by some... Which excludes or is missing proper diagnoses in a lot of kids.

 

Like LLM I prefer a more inclusive name of PANS.

 

A little off topic... Laura: I too started KPU treatment 3 weeks ago. I had a little rough patch between weeks 1 to 2 and hope that is it. All of our kids are trending better since starting! Our younger son had the toughest time with just 1 pill per day and it took a good six weeks to see improvement. Older DS has definitely had the most notable improvements and the least amount of response at 4 pills a day. It was very worth treating.

 

-Wendy

Edited August 16, 2011 by SF Mom

[tpotter]

Laura,

 

Not upset at all... Your well thought out perspective and well written posts always make me smile.

 

I cringe from the war wounds of debate regarding PANDAS/Lyme. Sometimes I feel like us mother's collectively understand this better than many of the Dr.'s. I have a problem and 'maybe' it is with the word PANDAS..... for many it is so much more than just strep. AND, there is always that ringing reminder in my ear of a noted nay sayer of PANDAS, also a Dr. K telling me on the phone Strep would never cause these symptoms. I argued with that particular Dr. for over an hour on the phone and boy was I wrong when it came to our family.

 

Hopefully, that gives you a little insight for my need to cringe. By the way, congrats on the 30 chlorella pills... I'm still at 20 pills a day myself.

 

-Wendy

 

Wendy,

 

I know things have gotten dicey when bringing up the possibility of Lyme on the PANDAS forum, but honestly, if you hadn't, we would still be wondering why my DH has RA that won't respond to RA meds, and my kids aren't getting any better (plus I'm hopefully responding to tx for Lyme.) I still have my fingers crossed that this takes care of the problem, and that we don't have to keep going down more and more paths, but if it hadn't been for your warning last year, my family would never have even thought about the possibility of Lyme, because DS had such classic onset of PANDAS (and he's been the one least positive on the blood tests, but most positive clinically in the end...very specific symptoms ended up cropping up.)

 

Despite all the comments that come people's way, I think it is terribly important for people on this forum to share all the information they know, because in the end, it is the only way any of us are going to have any chance of beating it.

 

So, thank you.

[sf_mom]

Tpotter: Your welcome... I don't know if I would have been a believer either if it hadn't been for a couple of mom's positive experience with treatment for their families and insistence on testing. Like you, our entire family is now working towards recovery. I think the message of chronic infection is finally out there and for that I am grateful!

Edited August 17, 2011 by SF Mom

[SSS]

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Edited August 17, 2011 by S & S