Can you please, please help me again with something that will not take any time at all???

They want to send my son for a second opinion to "an excellent pediatric Lyme Doctor" they said, - guess who, Dr. Shapiro, at Yale. I explained to them that he is the "anti-Lyme" Doc, works for insurance companies,says no such thing as chronic Lyme, etc........

I am hoping that as many of you as possible can take 5 minutes and send a two to three sentence fax to Peter Mancusi, District Office Manager, DYFS (732-565-2277), explaining something to the effect "that Dr. Shapiro actively works for insurance companies and then children are denied Lyme treatment, or anything else to the effect that you know to be true, supporting the fact that this IS NOT the right person to send my son to to determine if he has Lyme.......

If 20 or 30 people were to send this fax - it would put Mr. Mancusi in a very precarious position if he still intended to send me all the way to Yale to a Doc that he had clearly been told (by many people) doesn't treat Lyme, is paid to say it doesn't exist, relies on blood tests, etc. I honestly think HE MAY NOT SEND ME TO SHAPIRO - DUE TO THIS TYPE OF PRESSURE, IF HE GETS A LOT OF FAXES. (I saw an excellent article once but can't find it now - that talks about how Shapiro and Schoen once said there "was" this thing called chronic Lyme that needs to be treated, long term,etc, but now they don't believe in it, have changed their mind, etc.

Again, all I need is once sentence, referencing my name (Sandy Mishky) - my son's name (Emery Mishky) and what you believe to be true in terms of "why" it is totally inappropriate to send me all the way from Central NJ to New Haven CT, to see Dr. Shapiro, to do an evaluation of my son.

I will be ever so thankful.

(While you are at it, can you please send a copy of the fax to me at 732-819-9268?)

I am so very thankful for the letters and support I have gotten so far.

Sincerely, Sandy

(I will be posting this again in the morning because I know not a lot of people will see it tonight).

and through Google Topic Search

Good luck, Sandy

Would it help or hurt the situation to point out the expertise of Dr Jones?

Working on the "other" letter for you too.

Best Wishes Sandy!!

Not sure this is going to help.. or you will be successful stopping the IDIOT DUCK from evaluating your little one.

In other words.. it MIGHT be easier to nail jello to a tree than to stop this process. If they were to not use THIS duck... they have a bunch of slimy ducks waiting in the pond to take over.

I have been researching this for several hours now. I keep thinking to myself...

Would it be better to let them check him... and then deal with the results?

First...

Idiot duck and the agency hiring him could be notified in advance that this case is HIGHLY visable... and they will be under a microscope, watched by lawyers, and in the publics face... blah blah blah..

Idiot duck and the agency may then do some chicken clucking and avoid it all by themselves?

Second.. the law... and/or courts may have the right to do this... like it or not.

Third..

Once a report is written... each segment can be attacked with documented literature.. piece by piece.

I am NOT trying to discourage you.. not at all.

Just thinking of other options.

You might want to check out these posts...

I think there is some good info you can use.

Hope this helps. I will think more and get back with you.

I KNOW you must be freaking out. I am so sorry you all have to go through this.

http://www.parliament.the-stationery-office.co.uk/pa/ld199900/ldhansrd/pdvn/lds01/text/
11017-08.htm

http://www.actionlyme.com/SCIENCE_AND_LAW_PARLIAMENT_USDOJ.htm

http://www.citypaper.net/articles/070899/feat.cov2.shtml[/URL]

http://www.geocities.com/kmdickson0308/1-4.txt

Sandy..he does not treat chronic Lyme to efficacy! He does not believe it exists! This would be like having a Podiatrist oversee a Lukemia diagnosis!!! They DON'T do this with heart concitions, diabetes, cancer..why then with neuroborelliosis? You need Docs experienced in treating neuro-borelliosis.
http://content.nejm.org/cgi/content/short/335/17/1270

http://www.amc-dc.org/Conservation/lymedisease.htm

**Persistance of Bb abstracts:
http://www.geocities.com/HotSprings/Oasis/6455/persistence-special-abstracts.html

LYME WARS ( Doc St. in CA on controversy)
http://www.healthfreedomsolutions.com/lymewars.htm

Jackpot..in all his anti-Lyme glory..

All Shaporo's PubMed Abstracts are here:
[URL=http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=search&db=PubMed&orig_db=PubMed&dispmax=1000&doptcmdl=DocSum&term=%28Shapiro%5BAU%5D%29+AND+%28lyme+OR+burgdorferi+OR+%28borr eli*+]http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=search&db=PubMed&orig_db=PubMed&dispmax=1000&doptcmdl=DocSum&term=%28Shapiro%5BAU%5D%29+AND+%28lyme+OR+burgdorferi+OR+%28bor reli*+[/URL] AND+ixodes%29+OR+%28%28erythema+AND+migrans%29+NOT+glossitis%29+OR+garinii+OR+afzelii+OR+neuroborreli*%29

If that won't work, just go to PubMed and paste this in the search window (copy and paste exacrly as written below):

(Shapiro[AU]) AND (lyme OR burgdorferi OR (borreli* AND ixodes) OR ((erythema AND migrans) NOT glossitis) OR garinii OR afzelii OR neuroborreli*)

**Here's one (check out the last line)

Long-term neuropsychologic and health outcomes of children with facial nerve palsy attributable to Lyme disease.

Vazquez M, Sparrow SS, Shapiro ED.

Department of Pediatrics and the Yale Children's Clinical Research Center, Yale University School of Medicine, New Haven, Connecticut 06520-8064, USA.

BACKGROUND: There is little information about the long-term outcomes of children with facial nerve palsy attributable to Lyme disease, a group putatively at high risk for poor neurologic outcomes. OBJECTIVE: The purpose of this study is to assess the long-term neuropsychologic and health outcomes of children with facial nerve palsy attributable to Lyme disease. METHODS: We conducted a matched cross-sectional study of children with facial nerve palsy in Connecticut who met the Centers for Disease Control and Prevention national surveillance case definition for Lyme disease. We identified children with facial nerve palsy attributable to Lyme disease from population-based data for the state of Connecticut from 1984 to 1991 as well as from selected clinical practices from 1984 to 1998. For each case, 2 controls without Lyme disease, matched by age, were selected by sequential digit dialing technique. Both patients and controls (or their parents) were interviewed using structured questionnaires. Outcomes included self/parents' reports both of symptoms and of abilities to perform normal daily activities since the diagnosis was made (or for an equivalent period of time for controls). In addition, the patients with facial nerve palsy attributable to Lyme disease were evaluated with a battery of neuropsychologic tests. RESULTS: Of the 43 patients, 30% were female and 93% were white. Median age at diagnosis was 8 years (range: 2-18 years). Mean time to follow-up was 49 months (range: 7-161 months). Of the patients, 16% had been treated parenterally with ceftriaxone and 84% had been treated orally with either doxycycline or amoxicillin. Overall, 79% believed they were cured of Lyme disease, 9% believed they were not cured, and 12% did not know. The proportions of patients and of matched controls that reported increased problems with normal daily activities (eg, exercise, academic performance, word recall, sleeping) were similar. Patients with facial nerve palsy attributable to Lyme disease were more likely than matched controls to report symptoms of neck pain, changes in behavior, pains in joints or muscles, numbness or funny sensations in nerves, and problems with memory, but three quarters of them did not attribute these problems to Lyme disease. Twenty patients agreed to undergo neuropsychologic testing; all had average to above average scores on tests of IQ (eg, mean IQ was 110.2), memory, learning, attention, concentration, math, reading and spelling performance, executive functioning, abstract thinking, sequential processing, visuospatial scanning, and motor speed. There were no apparent differences in outcomes between children who received oral versus parenteral treatment. CONCLUSIONS: The neuropsychologic and health outcomes of children with facial nerve palsy attributable to Lyme disease 7 to 161 months earlier are comparable to those who did not have Lyme disease.

******************************************
and here: (A$$!)

1: Clin Infect Dis. 2000 Aug;31(2):533-42. Epub 2000 Sep 14. Related Articles, Links

Lyme disease.

Shapiro ED, Gerber MA.

Departments of Pediatrics and of Epidemiology and Public Health and the Children's Clinical Research Center, Yale University School of Medicine, New Haven, CT 06520-8064, USA. [email protected]

Lyme disease, which is caused by Borrelia burgdorferi and transmitted in the United States primarily by Ixodes scapularis (the deer tick), is the most common vector borne disease in the United States. Its most frequent manifestation, a characteristic, expanding annular rash (erythema migrans), sometimes accompanied by myalgia, arthralgia, and malaise, occurs in nearly 90% of persons with symptomatic infection. Other manifestations of Lyme disease include seventh cranial nerve palsy, aseptic meningitis, and arthritis. Extensive coverage in the press about the serious effects of Lyme disease has led to widespread anxiety about this illness that is far out of proportion to the actual morbidity that it causes. This problem is exacerbated by the frequent use of serological tests to eliminate the possible diagnosis of Lyme disease in persons with only nonspecific symptoms (such as arthralgia or fatigue) who have a very low probability that Lyme disease is the cause of their symptoms. Consequently, misdiagnosis is frequent and is the most common cause of failure of treatment. The prognosis for most persons with Lyme disease is excellent.

Publication Types:
Review
Review, Tutorial

PMID: 10987718 [PubMed - indexed for MEDLINE]

********************************************

What a &%$@#*&!!

Long-term outcomes of persons with Lyme disease.

Seltzer EG, Gerber MA, Cartter ML, Freudigman K, Shapiro ED.

Department of Medicine, Yale University School of Medicine, New Haven, Conn 06520-8064, USA.

CONTEXT: Few data exist about the long-term outcomes of patients with Lyme disease. OBJECTIVE: To assess the long-term outcomes of patients with Lyme disease. DESIGN: Two-part project including a community-based longitudinal cohort study and a matched cohort study. SETTING AND PARTICIPANTS: Six hundred seventy-eight patients identified from a random sample of all reports of Connecticut residents with suspected Lyme disease submitted to the Connecticut Department of Public Health from 1984-1991 were evaluated in the longitudinal study; for a random subsample of 212 patients from the larger study, 212 age-matched controls without Lyme disease also were enrolled. MAIN OUTCOME MEASURES: Self-reports or parents' reports of symptoms and ability to perform certain daily activities since diagnosis of Lyme disease; scores on the 36-Item Short-Form Health Survey and the Center for Epidemiologic Studies-Depression scale, for adults, by case-definition status and between patients and controls. RESULTS: Of the 678 patients, 51.6% were female, 34.4% were children, and 64.3% met the national surveillance case definition for Lyme disease. Most patients (85.6%) were treated with antimicrobial agents. Interviews were conducted a median of 51 months after diagnosis (range, 15-135 months). An increased frequency of symptoms (eg, pain, fatigue) or of difficulty with daily activities (eg, performing housework, exercising) was reported by 69% of the patients, although few (19%) of these problems were attributed to Lyme disease. Whenever there was a statistically significant difference in the frequencies of either increased symptoms or increased difficulties with typical activities between those who did or did not meet the surveillance case definition, in all instances the greater frequency of problems was in the group that did not meet the case definition. The frequencies of reports of both increased symptoms and increased difficulties with typical activities among patients who had been diagnosed as having Lyme disease were similar to those among age-matched controls without Lyme disease. CONCLUSIONS: In this cohort, although many patients reported increases in symptoms and/or increased difficulties with typical daily activities between 1 and 11 years after diagnosis of Lyme disease, the frequencies of these reports were similar to the frequencies of such reports among age-matched controls without Lyme disease.

PMID: 10665700 [PubMed - indexed for MEDLINE]

*******************************************

I don't know..will some of this work against you? Do you have the ILADS Guidelines to give with these??

Lyme disease in children.

Shapiro ED, Seltzer EG.

Department of Pediatrics, Children's Clinical Research Center, Yale University School of Medicine, New Haven, Connecticut 06520-8064, USA.

Neurologic manifestations of Lyme disease are common in children, among whom the incidence of Lyme disease is higher than among adults. Cranioneuropathies, in particular palsy of the facial nerve, occur in approximately 3-5% of children with Lyme disease, followed in frequency by meningitis (1% of symptomatic children). Children with only non-specific symptoms such as headache, arthralgia or fatigue commonly are misdiagnosed as having Lyme disease. Although such non-specific symptoms often accompany more specific signs and symptoms (e.g., erythema migrans, arthritis) in children with Lyme disease, very rarely are non-specific symptoms the sole manifestation of Lyme disease. A number of carefully conducted follow-up studies have indicated that the prognosis is excellent for children with Lyme disease who have been treated with standard antimicrobial regimens.

Publication Types:
Review
Review, Tutorial

PMID: 9166958 [PubMed - indexed for MEDLINE]

*******************************************

Am J Med. 1995 Apr 24;98(4A):69S-73S. Related Articles, Links

Lyme disease in children.

Shapiro ED.

Department of Pediatrics, Yale University School of Medicine, New Haven, Connecticut 06520-8064, USA.

Lyme disease is the most common vector-borne disease among children in the United States; the incidence of Lyme disease is higher among children than among adults. Extensive publicity in the lay press about the effects of Lyme disease has led to widespread anxiety about this illness that is out of proportion to the actual frequency of severe consequences, especially among children. The problem is exacerbated by the difficulty of documenting the diagnosis (or more often of ruling out the diagnosis in children with vague symptoms), especially when the diagnosis depends on serologic tests that are often inaccurate. This caveat applies particularly to commercial laboratories using prepackaged kits, which often give inaccurate results that should not be relied on by themselves to make a diagnosis. Careful prospective studies have found that nearly 90% of children with Lyme disease have erythema migrans. Although there has been great concern about congenital Lyme disease, no data suggest that it is a significant problem, nor has transmission of Lyme disease through breast milk been documented. Virtually all children will respond well to treatment for any stage of Lyme disease. Misdiagnosis is the most common reason for treatment failure. Long-term follow-up studies indicate that the prognosis for children with Lyme disease is excellent.

Publication Types:
Review
Review, Tutorial

PMID: 7726195 [PubMed - indexed for MEDLINE]

********************************************

What insurance companies does he write the guidelines for? That is surely a conflict of interest in treating chronic Lyme.

Have you asked the LDA for all they've got on Shapiro??
www.Ilads.org has the poeition paper and rebuttals for the IDSA Guidelines as well.

Then..Doctor K in CT (Jones will know) is affiliated with Yale, he is an LL neurologist, and sees children.

Ask Doc J about him, a possible SPECT (I think they can be sedated, but not positive)..ir even without a SPECT ha can give a neurological exam. Then, they will have their Yale (ish) Doc.

Leo Sh. with NYU, Carolyn B with Columbia..

Mo

if you are going the route of faxing,then i will be happy to help...not sure if people can just email the letters to you or i and we can fax them..just want to help you, not sure how to though

I see Tincup's point, and you may have to approach it that way if you cannot navigate this, and those are good references with which to do so.., but I really feel if there is any way you can avoid Shapiro getting his hands on this, you must.

I don't think it's any coincidence that they are sending you to Shapiro. I wonder if disclosing how anti-Lyme he is will backfire on you, since it is very appahrent that they are not in your corner at DyFus. They are NOT a nice agency, and not in your corner..I think might do well to play nice, but work hard behind the scenes to map this out.

A tip, change your termanology (accurately) but take Lyme out of your wording. Chronic neuroborelliosis, persistant infection that responds to abx, mico-bacterium, infection induced neurological condition, I am not thinking of them, but there are accurate terms that take the word Lyme OUT when you talk with Dyfus (just because of the stigma), that could help if you just casually start dropping them in converssation. Doc J's office may have terms appropriate.

Can LDA or others help you to redirect to the Yale Doc K, or the Docs with Columbia or NYU..a lawyer maybe, to help fulfill the "requirements" of using an affiliated Doc, just NOT THAT ONE...he will discredit all other Docs evaluating your son.

I'm really afraid he will make an example of the case to serve his own clear purposes.

My gut says ANY way you can divert this, maybe without saying do much about why????? or the faxes(???)..other than he is not experienced in treating chronic Lyme (how many cases has he treated ?? NONE!!).

Besides..who the he!! wants to spend time with this guy
http://info.med.yale.edu/pediat/PedID/EShapiro.html
Not a trustworthy puss on that one, I'd say..

Very worried, BIG HUG..
Mo

But nothing is helping. This investigation has taken 11 months. It would have been over 4 months ago but I keep giving them things they "can't ignore". In other words, we are all aware of several Doctor/researcher types on the EAst Coast who they can not say are not "legitimate, expert Lyme physicians". So I keep giving them reports and updates from these select folks.

So here is where it gets good.

I was told to sign a paper "yesterday" that basically said, "I agree that I will cease and decist on taking my son to "any" of my Docs at all. Now remember, I haven't been "treating" my son - just gathering reports from people like Dr. F - reports on my sons' neurological deterioration, his "newest" inability to walk long distances, and the inability to run and skip (can only walk now). IN OTHER WORDS: They want to get this over with. So I am now told, if I take my son to people like Dr. F or others - just for the purposes of the consults and reports I am getting to try to "save" him - they said "They will take me to Court and possibly remove both my kids from my home". (And get this - the case worker from DYFS really likes me. She is basically apologizing to me - saying she can't help me. She was in fact kind enough to warn me.

Did I sign their paper - NO! I will not just sit here.

But the truth is - I think they have already decided they are going to say I have Munchausen by proxy.

I have contacted a famous attorney out here - one who had all the successes with Lymerix vaccines. Don't know if he is willing to help and/or whether I can afford it.

I am really looking into the alternative stuff now! (ozone tents, etc).

And - what hurts the most - my son doesn't complain. He just doesn't even "try" to run anymore - or skip. He just walks slow..... He told me that is all he can do.....

If anyone knows any judges on the East Coast, or anyone influencial- I need the help.

Everyone I tell this story to - say they have never heard anything like it. Can you imagine DYFS basically saying - "Don't go to your recognized, expert Lyme Docs - ones they don't dare refute the credentials of - "Because it is making it too difficult and time consuming for us to do our job - which is "blocking you from treating your son forever".

Sorry for ranting. I am broken hearted. I am supposed to help my son.

And my Lyme is so out of control that I am not sure of my actions - I am too emotional.

I have never had "spider bites" before - ever with my Lyme.

And I seem to have "Shingles". A horrible red, purple thing around my rib cage. I showed it to the DYFS worker, and she said "Why didn't you go to the Doc". The answer, they are pulling all of my medical records.

So sorry for ranting....

You need an attorney, you need one to advise you right away on whether they can make you sign a paper that keeps you from seeking evaluation from doctors who have experience in Emery's illness. After all, they won't except what you've got, so..you get more.

It seems quite obvious that this is a bullying tactic so they will have an easier time of prooving the Munchausens. Run..don't walk..to as many Docs as you can get in with, and stop talking to DYFUS about any of it.

We have doctors with tremendous credentails, thank God..and each report you have from them makes it harder for DyFUS to discredit you.

If you continue to gather more and more evals, what can they do? Perhaps this is just a threat, and the reality is..if you have multiple reports..they cannot win a case in court because an impartial judge will be forced to give the doctor's opinions allot of weight.

You need a lawyer to confirm this, but this just doesn't seem right. It seems to me they cannot possibly accuse you of Munchausens when you are seeking assistance in evaluating your son with doctors affiliated with Columbia and NYU schools of medicine.

To my mind..those reports are the only way to protect you and Emery.

Perhaps (and you need a consult on this) but perhaps continuing to take him fot appropriate evals with doctors is your best defence. Let them take you ro court for doing that! By then, you will have mounds of data that cannot be ignored by an objecyive third party!

You have more Docs to go through..

CAN ((((LDA)))) help you get a lawyer to consult and more Docs on board? There is one that has info here on this site..I wonder if he can at least provide intirim advise.

It seems what you are doing is threatening to them..hence trying to scare you into signing a paper to "stop". Can you just keep going and not tell them until after the fact? Don't tell them anything. They have NO legal hold on you getting further evaluations as of now (without signing the paper)..right??

Here's a team:
http://www.columbia-lyme.org/flatp/staff.html

Doc F, Doc V.H. (if you can get a SPECT..would be strong evidence), Doc C.B. are the Lyme Docs.

Then, there is Doc K in CT, a Yale affiliated nertologist who sees kids..Doc J can help you figure out whether to see him.

You're focus is pure and good. You want the best care for your son's medical condition. THEY are wrong, not you.

Please consider making a decision to stop trusting ANYONE at Dyfus, even the sympathetic ones (their jobs are perhaps on the line). They cannot help you..nice or not, they are dangerous to your family right now. Did you get a copy of this paper? If you can get a copy discreetly, or already have it..I would hang on to that, and document all conversations with them.

And..Sandy..stop confiding in them..about you or Emery. Anything you say will be used against you. Focus on people who can help..talking to DyFus (except in minimal required contact) will not help you at all, and could seriously hurt you.

Mo

Enough is enough.

There is ONLY ONE THING..

I repeat ...

ONLY ONE THING ..

That matters here.

Your child's health!

It appears EVERYONE is skipping over that detail in the hopes of proving a point.

Who is right or wrong is mute at this point.

Using a child for a political statement is wrong.

If this were MY situation...

I would pack it up.. move out of state.. and get that child the help he DESERVES!

And to heck with the idiots.

Don't stay and play their paper work games while your child suffers. That is the same as taking time to try to write a plan out for a future exit route, while the bombs are dropping on you NOW!

No alternative stuff... no deals... no legal garbage. Only YOU can end the games they are playing because it takes TWO to play.

Get him to a REAL LYME DOCTOR, NOW!

Dr. Jones.. and ONLY Dr. Jones.

If you have to move to do it... MOVE!

You can always move back later when things cool down.

ANYTHING is better than dealing with IDIOTS who are allowing a child to suffer to save their own butts.

Go back to plain and simple.

The child NEEDS you to help him.

SAVE THE CHILD.

YOU are his only hope.

Thanks to you for all of your input.

I am unfortuneately not allowed to move out of state. I am divorced - and not allowed to.

I realize right now I really have to learn more about the homeopathic - non-traditional types of cures - things I am "allowed" to do without asking for permission.

Your evaluation of my situation is so right on.....

I need to no longer trust anyone.

Originally, my being so "nice" did seem to help. I think I now really have to almost eliminate dealings/conversations with them - but be nice.

I have spent (lost actually - from hardly working for last 9 months) - about $80,000, so now I can't even afford to hire an attorney. If I had one in the beginning, it would have been cheaper than what I have done. I am going to try to find one (with some connection) that will work with me with a "pay later" arrangement. I have the ability to pay them back in not too long if I can just stop "fighting DYFS" full time.

In terms of the Docs you refer to, you can't imagine the help I am getting. (I was going to see Dr. K in CT next week. I am sure you read his article in Newsweek - with his name and Dr. F's. If my son were to receive immunogoblin, that might really help...... DYFS doesn't even want me to try anything that might help.

What is really hard, is my son can't run or skip anymore. He hasn't has this problem since 3!!! He can only walk, and very slowly with lots of rest - if we have walked a lot during the day. My son had ABSOLUTELY NO PHYSICAL SYMPTOMS OF HIS LYME UNTIL 4 MONTHS AGO - NO SYMPTOMS, THAT IS, FOR THE LAST 3 YEARS.

He is supposed to start playing Soccer on a special league in two weeks, called "Buddy Ball". I was so excited about it. But he can't even run now.

Anyway, your insight and suggestions are right on the money I think.

I have one appt. still scheduled for a rheumatologist in NJ, President of ILADS, from BAsking Ridge NJ. Her name is Dr. G. Not sure if anyone reading this has any input on her. But I assume since she is president of ILADS she will hopefully not be afraid to help out. And I believe Dr. K's report, should I go to him in CT, would REALLY BE BENEFICIAL. The problem is, if I go there and not tell them, I think they are going to try to PIN THE MUNCHAUSEN THING on me for sure - you know DOCTOR SHOPPING TO TRY TO PROVE MY SON IS REALLY SICK!

All in all, I still believe I need those other reports desperately.

Although I didn't sign the paper to say I wouldn't seek other treatment, I did verbally tell them only about my appointment with Dr. G from Basking Ridge. I need to think carefully about going to Dr. K. My thoughts now are that I am going to go.

As far as lawyers,if I get one, it can't be just a "local". It must be someone with a very successful track record, someone like the law firm from Philly who won against the mfr's of the Limerix vaccine, I am thinking. Handling my case would I think be simple for them. And they are surely knowledgeable about Lyme.

If you know any good DYFS Docs in NJ, that would be helpful. In other words, any Docs who have handled cases against DYFS.

Thanks so much for all your help Mo, especially the Links to info about Shapiro and others.

FYI - I "HAVE" BEEN SENDING THE NEGATIVE INFO ABOUT SHAPIRO TO DYFS. I BELIEVE THAT IF I POINT OUT TO THEM THAT HE IS AN ACTIVE EMPLOYEE OF INSURANCE COMPANIES, WHO IS RETAINED AND ALWAYS SAYS THERE IS "NO CHRONIC lYME", THEN THEY ARE RESPONSIBLE FOR TRYING TO FIND SOMEONE WHO HAS A TRACK RECORDS OF DOING JUST THAT.

Also, some of the Mom's who have personally called DYFS said that if my son is denied treatment permanently at the close of this investigation, and I am forced to go to Court to reverse it, that THEY ARE GOING TO COURT TOO - AS LYME EXPERTS AND AS MOTHERS OR FAMILY MEMBERS OF DOC JONES KIDS.

I BELIVE DYFS THINKS THAT EACH TIME THEY GET A LETTER OR FAX, THEY ARE RECEIVING IT FROM SOMEONE WHO WILL BE SUPPORTING ME IN PERSON, important if I have a jury trial.

So please, please send any kind of fax at all about my situation if you can, especially as it relates to anyone who sees Dr. J.

Can you also send a copy of the fax to me? (732-819-9268)

You're doing all the right things.

Are you bound legally to tell them who you ate seeing? It still seems to me, it cannot possibly be used against you later, because the reports are all supportive of Emery's illness. Surely you can justify it by having documented what DYFUS is doing and saying, and their stupid paper..as part of your motivation to get your son the help he needs.

I think to stop disclosing much to them now, but being "nice" is a good idea, and forging ahead with more Docs, perhaps sending them (DYFUS) the reports AFTER (kick in their pants..) may be a good stradegy. But..O really don't know. A lawyer may want you to get them and hold on to them if it looks like they are going to bring you to court. Need at least a phone consult on that.

They would not have drawn up that paper if your documention from doctors was not threatening to their case. (!!)

Doc J can conference with Doc K on a SPECT. if Emery can undergo mild sedation to do one, that would be a very, very important and indisputable piece of information. DYFUS need not know till it's done, and ((if)) read by **Doc K in CT ( ask him if he wants you to do it at Middlesex or Columbia)..or **Doc V.H. at Columbia (Fallon works with him)..it is solid evidence of hypoperfusion ro the brain from infection.

If not, a neurologists eval is also a very strong piece..plus the neuro-psych eval with history.

Tip on Doc K..he is very good for this, but not very "emotional" in his work. I would make mention of the Dyfus situatopn, and especially Emery's medical decline off abx, and Doc J's notes for sure..but keep it mainly fosused on the medical. Just a personality tip.

He will come through with a very substantial eval for you. Even a moreso with a SPECT.

Mo