Second Opinion

[Guest guest]

Hi Kay:

Who makes bioflora and where do you buy it?

thank you

hugs,

lea

> here are 3 of us here taking massive abx and the bioflora on an EMPTY

> stomach does the trick.

>

> i was sick for at least 25 years before being diagnosed. i would still not

> be if my daughter hadn't been very sick and we if we had not fought

> vehemently for a diagnosis for her. i don't mean a lyme dx, i mean no one

> knew what to call what was happening to her.

>

> hope you feel better! this combo was the magic bullet for me!

>

> peace,

> kay

>

[Guest guest]

K, Lets break all this down and try and figure it all out. All your

symptoms do point to Lyme, but to be honest several other diseases or health

problems, but you wanto to know if it is Lyme. How do you explain the

possitive , LUAT and then Bands 41 & 32 on the Western Blot, 41 being

specific for all Borrelia, I did not know there was a band 32 so have no

idea on it. The LUAT and ELISA are rare false possitives and I can see 1

being false but both?

I never had a herx on either Doxy 300mg or Amox 3000mg, but had a Herx

from Hel* on Zithromax and Ceftin. Also i had a rash when I was first

infected but it was ignored, have been reinfected but never had another

rash. Why do you want to rule out Lyme so badly? I can understand

mis-diagnosis, i have had just a few myself, so onto question #1.

1)Yes, seems to my non-medical mind that your symptoms and test results do

point squarely to Lyme. but also check for co-infections of Ehrlichia and

Babesia.

2) I went 17 years and almost 30 Drs after my first bite. I have been dxed

with everything from Lupus, EBV,CFS,FMS, Heart Block and then MS. Luckily

the MS dx came after my Lyme dx so I knew better. My herx while on

Zith-Ceftin was horrendous, within 16 hrs of taking 1/6 the normal dose. No

real GI problems but the mini-herx comes like clockwork every 4 weeks.

3) My Dr feels we hit the jackpot with the Zith-Ceft combo for me. He has

wanted me to do I.V. but I still have cardiac problems so i cant do that

yet.

I would rather not have Lyme, but when I got that DX I made it my

mission in life to make sure it was the right DX. It has put a halt on my

life, I am a 33 yo Horsetrainer who cant balance to ride, think fast enough

to give lessons, or have the stamina to train. So in short, this sucks and I

wish when I got my first bite back in CT the Dr knew what it was.

Welcome to this list, these are great people. Holler back anytime. Pepi

[Guest guest]

Hi Jim, I myself had similar situations as yourself. Was ill although with

arthritic and neuro muscular symptoms which came later. I was Dx with CFIDS

and sometimes with MS. My SPECT did show the severe vasculitis, areas of

Hypoperfusion, lesions bilaterally. I at first tested negative on ELISA and

western Blot testing although was taking the 10 week course of Doxycycline

with no apparent help. I finally went off the antibiotics for about 6 months

and got retested. I was also getting more symptoms and alot worse in

severity. On the retesting I was positve for Lyme, and fought the system on

my old Dx of CFIDS in which nothing was done for me. I have been on long

term abx treatment with some antivirals because of positive PCR to CMV and

EBV. Also was positive for stealth virus. In my opinion, the first treatment

with Doxycycline was too small of a dosage, and not enough time. The night

sweats have ended with treatment for Babesiosis (Mepron and Zithromax). I am

steadily improving with long term abx treatment, and am getting treated for

the cyst form of Lyme with Flagyl and Biaxin. I fully believe I am on the

right track now, and in time the Lyme will hit the road. I have been ill

with Lyme for about 3 years, and totally disabled from it now for about one

year. I would tend to agree with your Dr on the Lyme issue, and you may be

spared the rheumatoid and neuro symptoms if you attain treatment soon. I

dont believe in the CFIDS catch all term, and there is something more to our

illness. This is all my opinion, and I am getting slowly better with abx

treatment, I started with IV Rocephin. But disease is still chronic or

should I say persistant. I dont recall a tick bite or EM rash, but many do

not. I hope this helps some. I was an avid hiker, fisher, and plain outdoors

person. Take Good care......Bill

[ ] Second Opinion

>

>Hi,

>(Sorry - As brief as I could make it.) I was diagnosed in 1995 with

>Chronic Fatigue Syndrome (CFS). My main symptoms (among many others)

>are fatigue, severe sleep disturbance, cognitive impairment,

>headaches, and periodic chest discomfort. Other symptoms include

>chronic prostatitis, blood-shot eyes, periodic night sweats, as well

>as others (no major arthritic or neuromuscular problems). I tested

>negative for Lyme prior to 1998 via both ELISA and Western Blot.

>Since 1998 I have tested weakly positive via ELISA, positive via Lyme

>urine antigen, and most recently positive via Western Blot (including

>bands 41 and 32); as well as negative on other occasions via Western

>Blot, Lyme urine antigen, and Lyme and Babesia PCR. My other

>positive/abnormal test results include brain hypoperfusion via SPECT

>scan, positive antibodies for EBV, HHV-6, chlamydia pneumoniae;

>positive PCR for mycoplasma; low IgG subclasses; and antinuclear

>antibodies. I have an extensive history of hiking in CT, although I

>have never noticed any tick bites or unexplained rashes. I had no

>response to a 30 day course of doxycylcine 100 mg b.i.d. in 1998 (no

>improvement or Herxheimer reaction). A recent visit to a CT Lyme

>specialist who did the recent positive Western Blot feels it is

>likely that I have chronic Lyme and proposes to start me on 30 days

>of Ceftin and Biaxin, 500 mg b.i.d. each because of the lack of

>results with doxycycline. Finally my questions:

>

>1. I am well aware of the difficulty of diagnosing Lyme, however

>does anyone have any strong feelings one way or the other about

>whether I actually have Lyme?

>2. Has anyone else out there had a similar situation: diagnosed

>with CFS and/or potentially with untreated Lyme for years, did not

>respond to doxycycline, and then took the Ceftin/Biaxin combination?

>What was the severity of your side-effects (GI, Herxheimer, etc.) and

>what were your results?

>3. Anyone else out there with experience taking the

>Ceftin/Biaxin combination? What was the severity of your side-

>effects (GI, Herxheimer, etc.) and what were your results? Any

>specific recommendations for avoiding GI impact, including specific

>recommendations for specific types, dosage, and timing of probiotics

>to maintain gut flora?

>

>I am new to this group and I would really appreciate any input.

>Thanks,

>Jim

>

>

>

>Many thanks to our founder and friend, Marta McCoy, for making

what it is today.

>

>

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>

>

[Guest guest]

hi jim and welcome.

i have taken the biaxin and ceftin treatment with extremely successful

results.

i wish i could remember if i herxed! but everyone is different as to

reaction to treatment and effectiveness. sometimes you have to try a few

combinations before finding the one that works for you.

DO get tested for erlichia and babesia.

i got terrible bowel problems and rashes until i started taking 3 capsules

of bioflora every morning at least 20 minutes before eating anything.

there are 3 of us here taking massive abx and the bioflora on an EMPTY

stomach does the trick.

i was sick for at least 25 years before being diagnosed. i would still not

be if my daughter hadn't been very sick and we if we had not fought

vehemently for a diagnosis for her. i don't mean a lyme dx, i mean no one

knew what to call what was happening to her.

hope you feel better! this combo was the magic bullet for me!

peace,

kay

" This is my simple religion. There is no need for temple; no need for

complicated philosophy. Our own brain, our own heart is our temple; the

philosophy is kindness. "

The Dalai Lama Tenzin Gyatsa

[Guest guest]

Pepi, I just read your post and when you said you are a horse trainer it

really struck home for me. I'm not a trainer but riding was my passion, and

of anything I used to do I miss that most. I'm also having to take a leave

of absence from my job as a high school teacher, so there will be a big drop

in income. I agree -- this sucks, but the group really helps me a

lot. I felt soooo alone before. Good luck. p.s. Do you still ride at all?

I'm so foggy right now I don't even think I could do an easy trail ride.

--charlotte

[Guest guest]

Good luck. p.s. Do you still ride at all?

> I'm so foggy right now I don't even think I could do an easy trail ride.

> --charlotte

Hey Charlotte, actually I have not been allowed to ride for the past year

due to a bad disc in my neck, I did however ride tonight for the first time

since taken off them!!! Yipeee!!! we only rode around the yard bareback,

but it felt soooooo good! I will not really ride till I go to by 3 month

visit and surgeon gives me the ok, hopefully next monday. I know what you

mean about the fog, its bad, had to quit even giving lessons because of

babbling. I know that there will be days I will not be able to ride, but

everyday is a step for us, right? Hope you can get back to riding also,

once you have the bug to ride, its hard to leave alone. Pepi

[Guest guest]

Dear Pepi,

YIPPEE!!!!

Congrats on your first ride in a long time! Were you singing " back in the

saddle again? " (VBG!)

Blessings & velcros,

Chris

[Guest guest]

In a message dated 9/6/00 1:50:03 AM Eastern Daylight Time, rod@...

writes:

<< actually I have not been allowed to ride for the past year

due to a bad disc in my neck, I did however ride tonight for the first time

since taken off them!!! Yipeee!!! >>

Pepi,

As a horse lover, I do understand how you feel about not being able to ride

on a horse for so long.. that is absolutely wonderful that you rode on one

last night. Terrific.. hopefully you can get back on the horse on a regular

basis soon.. fingers and paws crossed for you.

elizabeth

[Guest guest]

>

> YIPPEE!!!!

>

> Congrats on your first ride in a long time! Were you singing " back in the

> saddle again? " (VBG!)

>

Nope, It was bareback and I was in shorts so I thought " RAWHIDE!!!! " was

more appropriate. *-)

[Guest guest]

Dear :

What exactly does Dr. Slaybaugh expect to achieve by putting you in a body

cast for 3 months?

C.P.

On Thu, 15 Mar 2001 16:16:46 -0800, Scoliosis Treatment wrote:

> In his opinion, he would not operate, but he would either put me in a

body

> cast from breast bone down the leg, or a brace like I have with the leg

> extension, but in both cases, I could not bend, or even sit in a chair

for

> 3 months!

>

>

>

_______________________________________________________

Send a cool gift with your E-Card

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[Guest guest]

He feels the fusions would heal in a " straight " position by then.

in the East Bay

At 07:08 AM 03/18/2001 -0800, you wrote:

>Dear :

>

>What exactly does Dr. Slaybaugh expect to achieve by putting you in a body

>cast for 3 months?

>

>C.P.

[Guest guest]

> >Dear :

> >

> >What exactly does Dr. Slaybaugh expect to achieve by putting you

in a body

> >cast for 3 months?

> >

> >C.P.

[Guest guest]

I have the leg extension now, too.

Don't you have the part that has a slider that releases it so you can sit

down? Mine does.

How long did your doctor say you had to wear it?

Thanks!

in the East Bay

At 05:50 PM 03/20/2001 +0000, you wrote:

>

> > >Dear :

> > >

> > >What exactly does Dr. Slaybaugh expect to achieve by putting you

>in a body

> > >cast for 3 months?

> > >

> > >C.P.

>

>

>

>

>

[Guest guest]

> > > >Dear :

> > > >

> > > >What exactly does Dr. Slaybaugh expect to achieve by putting

you

> >in a body

> > > >cast for 3 months?

> > > >

> > > >C.P.

> >

> >

> >

> >

> >

[Guest guest]

dowsing: Most people know right off when the " Divining Rod " is mentioned.

The device used to locate water sources. When the rod bends, water is

there. For personal use, a pendulum or something smaller is used. It

responds to " yes " or " no " questions. The body always knows what is needs,

the " higher self " knows what it needs and replies accordingly. I never

heard of any reactions to the use of it. It's just another tool to use to

access information. This help or muddy the water?

;-)

Bonnie

bonami@...

May you be blessed with health, harmony,and happiness

second opinion

> >

> > Hi all!

> > For about six months now I have been experiencing what I call " head

> jerks " , esp. at night. Evidently when my head is back against something I

> experience the " jerk " as a " tremor " . Along with this, I am losing hair,

> have headaches and tingling in various parts of body. Yesterday, I felt

> pretty bad and made an appt. with a Holistic Chiropractic doctor here. He

> came recommended by my holistic buddies. He told me after muscle testing,

> I had a collapsed major arterie and " prescribed " a multiple vitamin called

> " Catalyn " by Standard Process Inc. I am to take 10 a day and see him next

> week.

> > Any thoughts on any of this?

> >

> > Also, on Sunday, I was told to quit zapping everyday and just do it once

> a week - that that could possibly have some bearing on all of the

symptoms.

> Also, when dowsed (another form of muscle testing), I was told I had a

tape

> worm.

> >

> > Feedback please.

> > Thanks in advance.

> > Bonnie

> > bonami@...

> > May you be blessed with health, harmony,and happiness

> >

> >

>

>

>

>

> --- rabbitbrain@...

> --- EarthLink: It's your Internet.

>

>

>

> Subscription email:

> mailto:bowel cleanse-subscribe

>

[Guest guest]

Bonnie, Could you explain the dowse and how its done?

I was reading the Rife MB and a man said he had terrible

trembling in incoordination after using that device. But

it seems most people dont suffer any drawbacks.

LIZ D

> [Original Message]

> From: Bonnie <bonami@...>

> <bowel cleanse >

> Date: 4/10/01 2:54:35 AM

> Subject: second opinion

>

> Hi all!

> For about six months now I have been experiencing what I call " head

jerks " , esp. at night. Evidently when my head is back against something I

experience the " jerk " as a " tremor " . Along with this, I am losing hair,

have headaches and tingling in various parts of body. Yesterday, I felt

pretty bad and made an appt. with a Holistic Chiropractic doctor here. He

came recommended by my holistic buddies. He told me after muscle testing,

I had a collapsed major arterie and " prescribed " a multiple vitamin called

" Catalyn " by Standard Process Inc. I am to take 10 a day and see him next

week.

> Any thoughts on any of this?

>

> Also, on Sunday, I was told to quit zapping everyday and just do it once

a week - that that could possibly have some bearing on all of the symptoms.

Also, when dowsed (another form of muscle testing), I was told I had a tape

worm.

>

> Feedback please.

> Thanks in advance.

> Bonnie

> bonami@...

> May you be blessed with health, harmony,and happiness

>

>

--- rabbitbrain@...

--- EarthLink: It's your Internet.

[Guest guest]

The stomach wrap is pretty much standard with most surgeons. I had it and it

does prevent reflux. The surgery helped a lot! Good luck.

Alan

Second opinion

> Hi kids.

> Friday I went to a bigger town(Birmingham,Al.)

> For a 2nd opinion.

> My new doc says.....(excuse my lack of medical lingo)

> That in the event of a surgery,

> The tacking of the stomach to the esophagous,is a bad idea.

> Acid reflux is treatable,creating a new valve just causes

> the problem to re-occur.

> This goes against the advice of surgeon #1.....

> Some of you guys have been here before right.

> What am i supposed to think now?

> Input...I need input.

> Thanks.

> Wish you the best.

> nfd44

>

>

>

>

>

[Guest guest]

Hi Beth Ann:

You're frustration isn't unique. I've seen two rheumatologists and

neither one has diagnosed me to date with PA. However, my family

practice doc is quite confident that I have PA. The rheumies are

afraid to give a diagnosis for PA when they don't see it show up in

any blood work (and it hardly ever does). The other sure sign is

sausage fingers or toes or ridges or pitted nails. Guess what? I

don't have any of these symptoms. But...here's what I do have: pain

and swelling in my hands and feet. This includes soreness in my

joints and occasional tendonitis across the top of my hands and just

general swelling in the hands and feet. My knees are getting so sore

that it hurts to climb stairs and get up from a chair. I get pain,

soreness and stiffness in my hips. I have chronic tendonitis in my

elbows and I've been noticing pain in my ankles. I also experience

lower back pain. Tendonitis seems to be major factor with most PA

sufferers.

Last time I saw a rheumatologist my main complaint was tendonitis in

my elbows and swelling, redness, stiffness in my hands and feet. He

took pictures and couldn't find any joint damage anywhere. He

wouldn't give me a PA diagnosis, but did put me on Celebrex so he

acknowledged that I was having inflammation problems. However, since

then I've developed the soreness and pain in my joints. My family

practice doc put me on MTX and has felt from the start that I have

PA, especially since I've had severe psoriasis for the past 40

years. My arthritis continues to progress....

It's obvious to me that a lot of the rheumies just don't understand

PA. I know from my own experience and the information I have gotten

from this group that I have PA. It's so OBVIOUS.

There are a lot of people with PA whose PA doesn't show up in blood

work. They don't have sausage digits or pitted nails. Most

rheumatologists seem to not want to give a diagnosis until one of

these symptoms shows up. It's crazy.

In a nutshell, my symptoms are:

1) psoriasis

2) imflammtion

3) swelling

4) pain

5) tendonitis

6) joint soreness and pain

It started out with just stiffness in my hands and feet and has

progressed. Right now I'm on 200mg of Celebrex twice daily and 5mg

of Methotrexate weekly. I'll be increasing my MTX dosage to 7.5mg in

the next week or two at the direction of my family practice doc. By

the way, he had a rheumatology seminar put on by a rheumatologist at

his office (he practices with another 4 family practice docs). He

spoke with the visiting rheumy about my condition. The visiting

rheumy felt that I should find another rhematologist.

So....don't be discouraged. You're in the same boat with lots of

other people just like yourself on the newsgroup. There are people

on the group who have gone for YEARS without a diagnosis. Trust your

instincts and how you feel....and learn for yourself. You'll find

that in the end, you'll know a lot more about your condition than

most of the doctors would ever admit. I'm fortunate to have a GOOD

family practice doc.

I hope this helps.

Mark Kelley

, CO

> I posted yesterday regarding my second trip to the rheumy and it

was

> suggested from another post that I get a second opinion. I agree.

I

> really am quite frightened that my rheumy is not diagnosing my

> symptoms correctly. As I said in my earlier post, I wish that I

> could believe him that he thinks that I do not have PA, however,

> every single one of my symptoms coincide with PA. Fibromyalgia

does

> not seem like any of my symptoms and I am just afraid that just

> because my fingers and toes did not look like saugages that he

could

> make that the deciding factor. I would like to have any advice at

> all from the group here to give me some advice as to what I should

do

> from here. Any advice would be appreciated. Thank you in

advance.

> Beth Ann

[Guest guest]

,

Do you now have out of network benefits or will you have after changing plans? That is an option. We are using our out of network benefits right now so that we can use the dr.s we want.

Angie

[Guest guest]

I have CIGNA POS it is what I was describing to you.

[Guest guest]

It stands for Point of Service. I paid CIGNA hmo and pos claims for 7 years.

[Guest guest]

PPO"s can have alot of out of pocket expenses so you have to make sure you review your benefit summery closely, the reason alot of employers are offering it is because the employess pay so much out of pocket so the employer pays less. I am not sure of your situation but if you have a family plan it definately starts to add up. When I was on a PPO I was using in network drs and having ear surgies and still ended up with the rest of the family paying 5000.00 out of pocket plus my premium every other week. POS is similar to an HMO policy where you may pay some out of pocket expense and have the choice to go out of network and have coverage after you meet deductiables that are not quite as high as a PPO's but still money out of pocket. I hope this helps clearify what they are sorry it is so long.

Amber

[Guest guest]

Well it depends on the price of the plan.. with the ppo it is almost exactly like hmo but you don't have to have referrals..just use network drs. With the pos you have your hmo and then out of network benefits also. If you can stay in network you sure have less out of pocket expense. You should be able to see if the drs you want to use are participating in either plan before you sign up. I know you can go to CIGNA's website and put in a plan type and your area and it will bring up the drs participating. On our pos plan if we don't use participating drs we pay a 250 deductible plus 20% co-insurance until we have paid 1000 out of pocket and then they pay 100%. You want to be sure of what you choose since you will be stuck with the plan for a year.

Angie

[Guest guest]

$780.00!!!!!!!!!!!!

Unbelievable! Did that include the cost of a CT scan. I know that just a single scan is enormously expensive.

Phil

[Guest guest]

Now I'm getting a little worried. I have an appointment with Dr.

Roberson tomorrow morning. I have a PPO insurance and when I called

to make the appointment they asked what insurance I had but they

did'nt say that they don't take that insurance. They asked for a

credit card number in case I cancel without giving them 24hr notice.

I checked on my insurance web site today and I could'nt find Dr.

Roberson listed. I have no idea what my out of plan fees are. I guess

I should have check ahead. Its too late to cancel the appointment.

Teague