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Dr Charles Ray Jones


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I am not only posting on Lyme topics...I am on the PANDAS board, too. I have every right to post about Lyme on the Lyme forum. And, after I was diagnosed with "Lyme" I did spend much time reading all the "books" and going through extensive treatments....I am no bully or dummy....just giving my opinion so others can be made aware of some things to think about!

 

P.s. I get many pm's with much support and agreement over some issues I post about....many people don't want to go public with their shared opinions because of, well, the kind of posts you replied with.(and I am sure you get them, too) So, please don't assume that "no one feels my anger." And, believe it or not...I had NOTHING to do with the seperation of the PANDAS and Lyme forum, absolutely NOTHING!!.......so, obviously there are many others that feel/felt as I do. Funny how you assume it is just me! I did thank Chemar AFTERWARDS!

Edited by Sheila Rogers
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Good Morning Pacific Mama, it seems like you get angry when someone posts something that is not in your line of thinking? not fair. this is a message board for ALL parents to speak. pmom seems to have personal experience with lyme, being diagnosed AND treated, perhaps to no avail. she's been thru it, and i can assure you knows something of what she speaks. I for one am very interested in her posts and what she has to say. i respect an informed point of view.

 

why are you so sure about the information that you have? you may speak for your experience only, but there are other views and two sides, and in my personal beleif? everyone here deserves to hear all sides, not just the 'pro-active' lyme discussion that you are giving. i am not pointing just at you, but your post to pmom is way out of line.

 

why is she researching Dr. Jones? why would anyone research any doctor? because they want to make sure they are putting their child's life in good hands. please take no offense, but common sense here, you are just a poster on a message board, and fine, your opinion is well taken, but someone who has something 'else' to say should also be respected, and posting that point of view is not to discredit, but to give 'another opinion'...(all are welcome btw)..

 

I've done MY research, AND have spoken to several of the PANDAS doctors mentioned on this board. I have gotten satisfactory replies that Igenex is NOT their choice of Lyme tests. Frankly, I am not sure where people are getting the info that Ingenex is the best test out there. and the suggestion that all the kids on this board who are supposedly Pandas, are now being diagnosed and treated for lyme? 'interesting' is the only response i can muster up... perhaps some should do their own research... why?? because your child deserves it. period.

 

I mean no disrespect to anyone here, i am a longtime poster, (as is pmom) and many here know me, i am not out to cut anyone's opinion, but to cut anyone else down because the do not share YOUR view is just plain obnoxious.

have a nice day. .. -_-

Edited by Sheila Rogers
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P. Mom and Faith,

 

Seriously, you’re all atwitter about what? Read my post again. My whole point is “why is P. Mom degrading a doctor she knows nothing about, and has no experience with?” Why research a doctor you have no intention of seeing? Why put him down on this forum? How strange and sad. That’s like me coming on here and trashing Dr. L, when I have absolutely no experience with her whatsoever.

 

And as for why you are bringing up Igenix test resuts and all the rest, I have not a clue -- as none of it was mentioned in my post. Let’s review: it was a post about an incredibly dedicated and caring doctor, who spends nearly every waking moment dedicated to helping kids. After all you have witnessed from parents here, I’m just still confounded about the need to denigrate him.

 

I hope for all your sakes, that when the medical boards get wind of Pandas doctors prescribing long term antibiotics, the doctors will have half the courage of Dr. Jones (and other dedicated llmd’s) to stand them down in the face of threats to pull their medical license. Because the majority of doctors cave under pressure.

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What are We all atwitter about?? I am not degrading Dr.Jones....you might have missed I wrote "kudos to him for helping sick kids." I was commenting on the fees he charges to help these kids...and, yes, people with money will flock to him for his help...but, where does that leave the not so fortunate? I read several articles on him last night....I do know something about him...although, yes, no personal experience. There are many articles on him and all the controversy surrounding him...people should goggle him...there is plently of positive stuff, too, as well as negative. How in the world do you know what my intentions are? How do you know that I may or may not of HAD any intentions of seeing him??? That is presumptious. I have a vested interest in Lyme because of my diagnosis and the strange bite I got about 15 years ago before I had kids. Could congenital Lyme be at play here??? If Dr. Jones is the best for treating Lyme in kids....I would be interested in seeing him (well, not anymore..can't afford him)...I have taken my kids to the best PANDAS docs....IF Lyme were to play here...why wouldn't I take them to the best Lyme doc for kids?? Hence...my research. In my heart of heart...I do not believe my kids have issues with Lyme....but, it does stick in the back of my head because of the reasons I explained earlier...that is why I am on here, posting, and researching docs! Sorry you find that strange and sad. But, I am not going in blind, nor will I accept any info. thrown at me without researching it......I found out you have to be careful where you put your trust and money when I was seeking help for my kids with PANDAS.

Edited by Sheila Rogers
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As everyone knows.... we initially thought PANDAS for all 3 of our children. Last year when we were pursuing treatment for our son I had no clue that Lyme/mycoplasma/co-infections could present with the same set of symptoms. We had an obvious strep trigger with a cluster of children. We fit the diagnostic criteria for PANDAS to the tee. My son got better with each IVIG treatment and hitting many back to back days of full remission/cure.

 

BUT, the lingering issues with my older PANDAS son (blood in stool), my younger twins elevated CaM Kinase and remaining issues, unresolved ASO and anti-DNAse-b in my husband and my symptoms caused me continued concern! We had to check out mycoplasma when the topic hit the forum. AND, we had to check out Lyme when the topic hit the forum. We got so fortunate to now 'potentially' know the cause of this nightmare for our family...... I am positive for Lyme and this is most likely congenital Lyme for my kids. Now, I can get down to business of truly helping my younger twins, my husband and me. As well as, resolve the remaining issues for my son.

 

Without this forum... I could have easily ended up with MS, my twins with Lupus (current livedo reticularis which is an indication of Lupus) and my husband with cancer.

 

When I reported about our visit to the LLMD I got both positive and negative comments.... even called irresponsible. I was asked privately about the post being removed and frankly I was o.k. with everything that was said in those posts. The only thing I was upset about is I had taken my valuable time to answer a post where I took their inquiries for face value all in an effort to help this individual's child. I honestly hope I'll post something that will resonate with a parent so they too will have the courage to seek help for their child/children. AND, that was met with anger, frustration and what I view as fear.

 

I am very grateful our LLMD did not view this as PANDAS/LYME/Virus/Mold/Allergy issue but as a hyper-immune response that will eventually shut down with proper treatment.

 

P. Mom your posts do seem like you are angry/fearful and you are trying to vitally debunk the notion that Lyme could be the real problem for a child that was initially diagnosed with PANDAs. You were attacking Dr. Jones and his fees and that is very obvious and Pacific Mama's post was warranted.

 

You should know behind the scenes many of us continue to help children receive proper diagnoses of Lyme that were originally diagnosed with PANDAS and some of those children are well on their way to full recovery (I think upwards of 20 children now). Those parents will come forward one by one when they are ready.

 

Had I known of some of these microbes in advance of the PANDAS diagnoses I could have saved myself the $12,000 spent at well respected children's hospital in our area performing tests, maybe the $40,000 spent on traveling to Chicago and paying for hdIVIG treatments (I unfortunately will never know answer if treatments were or weren't needed.... they definitely helped and I have no regrets). I have one of the most respected LLMD 3 miles from my house and it took me almost a year and half to find him. The Western Blot Test through Igenex was $260.00 for me. Had I done that initially I could have 'potentially' saved myself a ton of money. I am only hoping to do that for others. Our money has been spent, I have no regrets..... I continue to post our story to help the CHILDREN and for parents to have a good set of tests available in advance of pursuing PANDAS diagnoses. I take my valuable time to do this even subject myself to misinterpretations.

 

Its just craziness. I am hoping to share my experience further with our LLMD and potentially bring my twins to full recovery without more invasive treatments. ALL IN LIGHT OF HELPING OTHERS. You seemed very married to the notion of keeping this a separate issue PANDAS from LYME or other microbes. I feel your posts are very clear but again it is up to others to decide for themselves.

 

-Wendy

Edited by SF Mom
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If you would read all my posts, you will never find once that I said Lyme could not be the root cause of some of these kids problems.....never once. Yes, so I was saying the guy charges enormous fees...so what? I didn't say anything else about him. Not a bashing of him in the least...not even close.

 

As far as being fearful...aren't we all a bit?? Isn't it fear for your child's health and future that drove you to have sought all the treatments that you have and to spend all the money you have? I have been taking all this in for the last 3 years and have not gotten my kids any treatments that I wasn't convinced about, weren't proven, etc., and they are both doing well. Things change quickly!

We all take valuable time to post and subject ourselves to misinterpretations...all of us! And, it is a common goal among us all...we ALL want our kids well...we ALL are trying to help...we ALL need to be able to present all sides.

 

Like Faith said...."I'm out!" (of this one...I have said my peace)

Edited by Sheila Rogers
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Kelly... I have read all of your posts and I am not opposed to your opinions. Take a deep breath. You did seem passive aggressive towards Dr. Jones fees. . . AND, as you know long term antibiotic treatments is NOT a proven treatment for PANDAS either. We are all in the same boat here NOTHING IS PROVEN for PANDAS: long term antibiotics, IVIG, PEX, Homeopathic remedies, etc. We are merely sharing ideas that have worked for us individually. For you that was long term antibiotics, for us it was a combo of 3 hdIVIGs and combo of antibiotics that follows a 'Lyme like' protocol for our older son. With our younger twins, we hope not to resort hdIVIG but only time will tell if it is an effective treatment.

 

We are taking huge risks to save our children and hopefully those risks will be to their benefits as well as others.

Edited by Sheila Rogers
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thanks for your long post sf. listen, i don't know what your problem is....if you have found what you think is at the root of your child/children's problems, great and thank the Lord. if others are helped by this, again, Praise the Lord. SF, YOU recruited me to this forum for pandas and encouraged me to look into pandas, so perhaps I have a little moment of confusion when you were so staunch about me seeking pandas docs and ivig....ultimately I decided it was not for us as yet. You were 100% adamant and confident taht your child had pandas and that ivig helped him immensely, 98%!!!!! said you. And btw, the pandas doctor that treated your child? it is Dr. K., corrrect? have you consulted him on any of this? I'd be interested to know what he said......and one other thing, and really sorry to put this out there, no offense, but $40,0000 i don't hve to spend on anything 'controversial'...never did and never will. thankfully you do.

 

so if I (and I am speaking only for myself) am a little confused on the information you are now providing others, sorry, but that is my common sense speaking. just the fact that you were so adamant before and are now...what? ... conceding that you may have been...wrong? is that what you are putting forth here? well, then...is it just a tiny bit possible that you may be .. umm...not so correct now?

 

listen, I beleive that you wholeheartedly beleive in what you are writing and saying. I have my own opinions, and yes, i am scratching my head here. I see alot of "I beleive this"...and "I beleive that"....and he thinks this and he thinks that. could be, possibley, but it is NOT fact, and because you thihk it does not make it true. please be careful. you may put forth what you like, and I am grateful, beleive me I am. I am not trying to cut you down. but I do have my concerns and doubts. and when I read information, I usually have the mentality of "take it from the source"....I am not sure why you and some others are so adamant about some of what you have 'beleive'....

 

If you want me to lay my cards out on the table right here, I will. love it or hate it, i truly don't care, i am not here to convince anyone of anything. but 'you' have lyme, and you gave it to your children? is that what you are saying? you have put forht in another post about lyme being sexually transmitted? there is no evidence to back this up. you and your doctor can 'think' all you want. and as far as passing lyme 'in utero'.....it may be possible, but what has been reported is that those babies died shortly after birth or were stillborn. listen, you now have lyme, mrs. johnson has lyme, my aunt tilly has lyme. i am sorry, but the coincidences here are just way too much for me (personally). it certainly be the case for some, but once again, NOT ALL. there is no way in God's creation that every parent here whose child supposedly has PANDAS, gets them tested for lyme, and comes out positive. (thru Igenex only)...wow. to me, that is way unbeleivable. almost everyone here? so lyme is the new pandas? everyone here has lyme on top of pandas? everyone had lyme to begin with, and now we are unfortunately getting pandas? has everyone on God's green earth been bitten in the azz by a tic? i find the coincidence alone, astronomically .......unlikely......

 

Everyone deserves information, but SF and the lyme moms, you are being unfair to suggest, no INSIST there is some sort of lyme conspiracy or epidemic.

 

Once again, my child is not sick enough for me to beat this horse to death. i have had the lyme testing thru our DAN doctor thru Western Blot. I am grateful to have found the information here. yes. thank you thank you......but we were negative for everything. I am not telling anyone here they do not hve lyme, my message is that omg, it just cannot be that every pandas child is now getting dxd with lyme. my personal beleif? and take it or leave it....we are desperate parents....and those that are not feeling their child is well enough for thier satisfaction will, yes, follow the devil himself in order to get their kids well. me? no one here will be congratulating me for going the distance, because I choose to draw the line when giving my child powerful meds and cocktails of antibiotics (some that have the potential of causing cancer) in order to eradicate a few tics or whatnot. again,if my child were way worse and unmanageable, i might succumb. but I prefere a live child to a dead one.

 

sorry, that was harsh. but now "I" am being adamant. I would really prefer not to go back and forth here, so please everyone, just take what you like from this thread, or don't. i have my own feelings and opinions, always have. i am just a parent/poster here. don't have a website, don't have a book, don't have anything to prove. but I highly resent some becoming the 'experts' here. no one here is.

 

Wendy, truly good luck to you.....I even know that if I have questions or need help in the future, you will be there to answer, i have said that of you before. really no hard feelings. but you have a way of getting in the ring with anyone who does not share your 'current' point of view.

 

regards

Faith

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SF Mom...just to clarify what my kids are on. They have NEVER been on high dose long term antibiotics as a treatment for PANDAS. They are basically in remission and have been for a while now......they take low dose prophylactic antibiotics to PREVENT strep(at times I totally take them off when exposure is not high)...they are NOT on antibiotics to TREAT their PANDAS. This has been a proven treatment in preventing strep in RF patients....it is basically the same protocol. So that I went with.....they have been implementing this protocol and having success with it for decades.

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Faith, You know privately I suggested you test your child's underlying immune system to see if their was a problem to potentially point you in direction of a treatment 'WHATEVER' that may be. AND, you know privately that I thought you could wait it out if you were unsure of a treatment plan for your son. You know privately I have always tired to thoughtfully respond to your messages. I remain hopeful that you too will find the answers for your son and you will be able to hang your hat on the fact that you were very cautious.

 

I don't think anyone is insisting on anything. That is your perspective. I have stated over and over and over that I believed fully in the PANDAS diagnoses, there was an obvious strep trigger, we had a cluster of children with two of them being positive for strep at the time of playdate. My younger son got seriously ill after that timeframe and was hospitalized. My older son had wonderful response to hdIVIG treatments. We did see huge improvements in areas we did not know were related to PANDAS. People have asked me privately if I have regretted the number of IVIG treatments we have done and the answer has always been the same. We saw an amazing response. Not everyone has so I always respond with a cautious tone and the disclaimer that we were always on higher dose antibiotics and did not follow Dr. Ks antibiotic protocol. Dr. K is very aware of these issues... I have tried to thoughtfully present it all, good and bad so others can learn. YES, we may have mistakenly bought into the PANDAS diagnoses and maybe not. None of us knew a year ago that there were other possible chronic infections that could cause similar issues. I thought I've been fairly clear about our experience. We are doing DNA testing for LYME, yes I am positive for LD but I have always been cautious to say 'potential' Lyme and Lyme like protocol .... and I know that often gets missed or forgotten. We may do further testing for mycoplasma too even though my children currently show a negative response, etc.

 

AND, I will say our LLMD said we may never find the cause of the infecting agent. It might be something that is YET unnamed. The important thing is my children are responsive to treatment and when I prepare to take them off the dangerous cocktail of antibiotics there will be someone here who will think I'm nuts.

 

Anyway, I could go on but I do actually have to get some work done today.

Edited by SF Mom
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Faith.. Just read your last sentence. You know 'always' no hard feelings. I think we both have always gotten that about each other.

 

"You have a way of getting in the ring with anyone who does not share your 'current' point of view"..... Maybe you are right 'for some people' it feels that way. AND, I might say the same about you and that is what makes for a good debate.

 

-Wendy

Edited by SF Mom
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But Kelly.... you went with 'something' and I do not begrudge you for your choices. You make the leap of faith that the RF protocol is effective for PANDAS remission? Please do not begrudge me of my choices.

 

-Wendy

 

 

I don't begrudge you of any of your choices...everyone here does what they feel is best for their kids. Have I ever told you that you were doing the wrong thing going down the Lyme route? I don't know where some of these statements come from.

 

I made the "leap of faith" that the RF protocol was effective in PREVENTING STREP.....which, in the majority of cases, it does work. It has worked for us for 3 years.

I never thought of it as a treatment protocol for PANDAS remission......however, since it is keeping strep at bay, it is keeping PANDAS at bay....same mechanism as RF and heart damage it seems.

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