Re: adult docs

[Guest guest]

I was seronegative for the longest time. The CD57 test by labcorps saved my life

because I had a doc willing to treat on clinical presentation (symptoms) and

this test. It is an immune system test.

 

Spec Brain Scan is done well at Kansas University Medical Center. So much so,

its worth traveling for.

 

PANDAS test for systemic strep.

 

Mycoplasmosis

 

Frylaboratories.com for a photo of your red blood cells can show a doc your

co-infection.

 

Peggy

From: smd <merrymom1013@...>

Subject: [ ] adult docs

Date: Saturday, August 30, 2008, 7:18 PM

Hi all,

As most of you know, my daughter is finally making real progress in her recovery

from Lyme. We are almost at year 3 of treatment with Dr J. Through all of it I

never really thought I had Lyme. I was tested once to be on the safe side & it

was negative. I recently had some routine bloodwork done & my family doctor

threw in a Lyme test (through Quest). I had a positive IGM band 23. To my

doctor, this is a negative result, but we know how untreated lyme can work out.

Does anyone have comments or suggestions about any of the NJ/PA LLMDs? If you

do, please email me off list.

Thanks, Sue

[Guest guest]

Ill try to email you my list of Drs in central NJ as well as contacts in PA for

their input within a day or 2. meanwheil dont bother with Fry labs--costly and

we arent exactly sure what it IS thats being " seen " and many many Drs and others

are suspect of any live blood analysis

my own opinion is if it were valid and accurate many more would be doing

it--after all the sheer numbers of infected persons plus the money that can be

easily made--there has got to be a good reason so few are jumping to do this

live blood testing.

Id get a good LLMD and theyll test for coinfections with the Lyme- be aware that

most Drs even LLMDs wont treat unless you have sx. There is NO test that will

absolutely show whether the infection is active vs already gone and so without

symptoms they feel ( possibly justifably so) that there isnt anything to " treat "

SPECs are ok if done well and analyzed well too, but may not be necessary--again

you arent having neuro sx?? it does entail injection of tracer..so its not

considered noninvasive--and youre insurance may not pay for it if called

" experimental "

and CD57 is very controversial as many have sx that dont at all correllate with

the cd57 count and they havent yet figured out which of us can be helped by it.

So you have a guess as to IF it means anything with any gievn patient!

Thats why many Drs wont even bother with it. Despite some believing otherwise it

cannot be validly used to monitor effects of meds either. A number of studies

showed this.

good luck and Ill be in touch!!

Finette

[Guest guest]

Thanks Peggy & Finette,

I do want my first stop to be a LLMD. I belong to an HMO that won't cover any

of this. I do have some symptoms- arthritis, etc. Even with my daughter's

lyme, I haven't thought of my symptoms as Lyme related. I have a strong family

history of arthritis on both sides - parents, cousins, aunts, GP, GGP. Most of

my other health problems are related to being 50 & overweight. But they have

been worse lately, which is why my doctor threw in some extra tests like the

lyme. Do I have symptoms that could be Lyme? Yes, but no new neuro symptoms or

anything approaching what you all & my daughter have had to deal with. We do

live in a high risk neighborhood. Hardly anyone here has been as sick as my

daughter. I don't want to do nothing & wait & see if I become that sick. Money

is also an issue- insurance hasn't covered any of my daughter's Lyme stuff since

her first year, when they did cover 8 weeks of her IV abx. At this point I

would be happy to find someone who would give me oral abx. I think the

closest LLMDs to me (about an hour_are Dr E & Dr S in Central Jersey & Dr B in

eastern PA.

Sue

[Guest guest]

Id try Dr B first then Dr E and if the Dr S is the one in Howell Id avoid him

period--if you want reasons please email me!!

good luck and yes with some arthritis sx you never know what from and with the

family history that may mean you are at higher risk to be more affected by Lyme

[Guest guest]

Sue:

 

You live in an endemic area.

 

www.ilads.org  Dr. Burrescan's Treatment Guidelines show the two page symptoms

list.

 

Being overweight can be a big symptom because often Lyme increases lipid

production (fat cells) because it likes to hide in fat. Some people gain alot of

weight, while others can't gain weight at all.

 

It affects the endocrine system.

 

Also, without insurance, and if you are able to cope with your symptoms, you

might try the Doug Coil Rife machine, and Rosner has books talking about

its use. I believe that this is the most inexpensive method for the long haul of

treatment.

 

Also there are many other alternative care methods of treating lyme outside of

the medical regimen.

 

Dr. Crowden has an herbal protocal, as well as Dr. Jerigan in wichita, Ks.

 

Peggy

From: smd <merrymom1013@...>

Subject: Re: [ ] adult docs

Date: Sunday, August 31, 2008, 10:43 AM

Thanks Peggy & Finette,

I do want my first stop to be a LLMD. I belong to an HMO that won't cover any of

this. I do have some symptoms- arthritis, etc. Even with my daughter's lyme, I

haven't thought of my symptoms as Lyme related. I have a strong family history

of arthritis on both sides - parents, cousins, aunts, GP, GGP. Most of my other

health problems are related to being 50 & overweight. But they have been worse

lately, which is why my doctor threw in some extra tests like the lyme. Do I

have symptoms that could be Lyme? Yes, but no new neuro symptoms or anything

approaching what you all & my daughter have had to deal with. We do live in a

high risk neighborhood. Hardly anyone here has been as sick as my daughter. I

don't want to do nothing & wait & see if I become that sick. Money is also an

issue- insurance hasn't covered any of my daughter's Lyme stuff since her first

year, when they did cover 8 weeks of her IV abx. At this point I would be happy

to find someone who

would give me oral abx. I think the closest LLMDs to me (about an hour_are Dr E

& Dr S in Central Jersey & Dr B in eastern PA.

Sue

[Guest guest]

Thank you Finette. That is just the kind of feedback I hoped for. I don't need

to know why to avoid Dr S unless I totally strike out with the others.

Take care of yourself- you & your son are in my prayers,

Sue

Re: [ ] adult docs

Id try Dr B first then Dr E and if the Dr S is the one in Howell Id avoid him

period--if you want reasons please email me!!

good luck and yes with some arthritis sx you never know what from and with the

family history that may mean you are at higher risk to be more affected by Lyme

[Guest guest]

Sue,

You might also want to check out Dr. Zhangs protocol.  I know that you can

schedule phone appointments with him in NY. and he can help you figure out what

herbs to take.  It is a chinese medical treatment and not as expensive as the

western treatments.  From what I have read on the net. people do seem to do well

on the plan depending upon what coinfections might be implicated.  If insurance

did not cover my daughters treatments I would have tried the protocol with her. 

The treatment is more about supporting the immune system than going after the

infection, although some herbs do kill off the infections.  I wish I had his

contact info. but I think you can get it in on-line.  My daughter and I will use

his protocol once we can get through our western treatments.  For me the

neurological issues and fatigue have been the most stubborn to eradicate and

nothing seemed to help but IV treatment which I have been on for almost 2

months.  Not sure what

to do if insurance doesn't cover it.  The rife machines seem pretty expensive

to me but if they work then it is worth it. Make sure you get tested for

coinfections.  The both of you.

Wishing you well,

Deanna

---  

[Guest guest]

I?took Evan?to Dr Zhang--nice man good dr!!!! he helped evan for awhile but when

all sx returned? without a real remission--and the herbs lost effect-even he was

flummoxed and we thought it best to move on BUT Id recommend him in a heartbeat

his? info is

http://www.sinomedresearch.org/drz.htm

email? yalezhang@...

Zhang Clinic

20 E. 46th Street

Suite 1402

New York,? NY 10017

Tel: (212) 573-9584?

Fax: (212) 573-6639?

I think he sent notices that he moved recently but Im unsure if this is the new

or old address--sorry---He didnt move far so Im guessing the telephone is

same--call--very NICE but a bit hard to understand the staff.

and you can get the herbs mail order in between visits and do phone visit

between too!!

good luck and Id still recommend getting a good LLMD on board even if using Dr

Zhang too-Dr Zhang is also great at consulting and working with your own Drs!!!

Finette

[Guest guest]

Hi Sue,

I searched high and low in PA. I live about a 45 mins south of

Scranton. I found one who retired and got resistance from most others I

called. I don't know where you live, but I decided to go to Hyde Park,

NY to Dr. Horowitz. He uses all kids of treatment and he and his staff

are very positive and upbeat. It seems they never run out of solutions.

My daughter and I have both been treated by him for almost two years

and the results have been amazing. I never thought either of us would

get this well.

Unfortunately that's all I've found. One thing I have learned is

that you want to stay very far away from Geisinger. The general

attitude I've gotten there with every doctor I've spoken with has been

unbelievably ignorant. I've actually heard of doctors being formally

reprimanded for treating and/or diagnosing Lyme. My daughter had a

pediatrician from there who had been wonderful until I started getting

her treated. Then during one appointment she told us that " There's no

such thing as Systic Lyme. "

Good luck in your search.

ANnie

>

> Hi all,

> As most of you know, my daughter is finally making real progress in

her recovery from Lyme. We are almost at year 3 of treatment with Dr

J. Through all of it I never really thought I had Lyme. I was tested

once to be on the safe side & it was negative. I recently had some

routine bloodwork done & my family doctor threw in a Lyme test (through

Quest). I had a positive IGM band 23. To my doctor, this is a

negative result, but we know how untreated lyme can work out. Does

anyone have comments or suggestions about any of the NJ/PA LLMDs? If

you do, please email me off list.

> Thanks, Sue

>

>