Re: What meds have worked for you

[Guest guest]

Hi Val ...

Thankd so much for the info and sorry that things have been so rough.

Hopefully some of this will porvide some insight...will keep you informed...

Byron(calif)

Re: [Lyme-aid] What meds have worked for you

>From: ValP74@...

>

>Byron I have basically been on a million meds and had different reactions

>Here is a short list and the years the meds pertain to.

>

>93-IV rocephin 6 weeks Remission 8 months

>

>94 or so-IV claphoran 6 weeks followed by oral zithromax 3 months Remission

>8months to a year

>

>95- Bicillin 14 weeks followed by and combined with zithromax and

Amantadine

>6months Remission 1 year and a half

>

>end of 96 Amoxicillin and probeniced 6months Remission 8 months

>

>summer 97 Zithro/Amantadine 6 months remission 1 year!!

>

>Summer 98 Nothing has worked anymore Have tried Zithro, Amantadine,

>Plaquinel, Biaxin, Doxy, Ceftin, Bicillin shots, IV Cefobid still screwed

up,

>Functioning anywhere from 50-70 % better depending on the day.

>

>Hope this helps -Val (LI, NY)

>

>

>---------------------------

[Guest guest]

In a message dated 6/25/1999 11:28:56 AM Eastern Daylight Time,

F.Byron@... writes:

<< good idea for everyone to write in telling which meds and at what dosages

and taking them for how long, helped them. >>

Byron:

I think this is an excellent idea except we all have such varying

symptoms. I had mostly fatigue, muscular pain, liver ,spleen and heart

involvment. The combo that finally brought me to a " symptomless " condition

was 500 miligrams of Biaxin twice a day and ? of Plaquenil twice a day.

After three months I had no symptoms at all. Stayed on it for six months

total. Hope this can help someone. Mona

[Guest guest]

Dear Byron: Okay, you asked for it - the following is a chronology of

my medications:

Bitten in NH August 1998 with EM rash: [lyme meningitis symptoms]

1. 200 mg/doxy 2x/day for 3 weeks.

2. Increased doxy to 4x/day for 2 weeks - felt a little better.

3. Put on Rocephin IV for 6 weeks. Felt miserable!! [and it sludged my

gall bladder].

4. Purged my system of antibiotics for 1 month. Did neuro/psych testing

and was told by s Hopkins that I had attention deficit and they

wanted to put me on Ritalin [i refused].

5. I took Biaxin for 5 days at the end of January to do my Igenex LUAT

test and I FELT LIKE A NEW WOMAN!!

6. Found an LLMD: I did the Biaxin/Amantadine combo for a month while

waiting for test results.

7. Have been on IV Zithromax 500mg M-Th, 1g F since March and have just

added Amantadine [after gall bladder surgery] which seems to be

working.

8. Also, I've been on B-1, B-6 and B-12 shots for 1 month.

Byron, I think another important point is what our

ongoing/lingering symptoms are. For me, the fatigue is finally coming

under some control [unless there is stress or I have to think!], but I

am still incredibly photophobic to the point of usually wearing

sunglasses indoors. I had not been able to read a book [lack of

concentration and visual disturbance] since last August. Finally, I was

able to read my first book in May and I was elated! Then, my gall

bladder got sludged again and was taken out and I have lost the ability

to read again. I think I've begun to feel better with the introduction

of Amantadine.

Lovette {pa}

[Guest guest]

Byron,

I had a course of amoxicillian (4000mg/day) for 6 weeks while waiting for

test results-no effect, then, 1000mg/day of Biaxon for 6 weeks after a positive

WB, I felt something. I am now on 1000 mg of Biaxon & 1000 mg of Ceftin/day

(now for 5 weeks). I definitely feel some improvement in my leg function and

left arm function. The improvement comes and goes but it is there. I still

suffer fatigue almost all the time.

I'm going to get back to normal! So is everyone else. Medical science is

still in it's infancy but is starting to make discoveries exponentially.

Larry (NV)

[Guest guest]

Hi Byron,

I am presently on 1500mg of Ceftin, and 500mg of Zithromax daily. I am also

on lots of other prescribed drugs, Lipitor, Neurontin, Paxil, Vicoprofen,

Diflucan to name just a few. I wish I could say these drugs have helped me, but

I can't really, I think they did for awhile but maybe my body or spirochetes

have adjusted to these meds and I need a change. I am presently lobbying my

doctor for a change in orals, or to go on IV meds, and I'm not really making

much headway.

Good idea this survey. Love to see the results when you are done.

Best to you,

Marta, NJ

Hi everyone...

I was thinking that it might be a good idea for everyone to write in telling

which meds and at what dosages and taking them for how long, helped them. I

would like to compile these and make a list . There are so many different ways

peolple are being treated and so many variations it is hard to know what to do?

And what will work?

[Guest guest]

Excellent idea.

Istarted on 2gm rocephinIV and 500amoxicillin 4xday

after 12 wks amox500 4xday and Biaxin500mg3xday and plaquenil 200mg 2xday

changed to Biaxin 500mg 2xday and suprax 400mg 3x day and plaq

changed tosuprax 400mg 4x day and Cipro 500mg 4xday when I started to get

worse

Now on IV rocephin 2gm every day,Plaq. and Cipro500mg 4xday

This should be very interesting I'm sure I would

have stayed in remission on Biaxin 500 mg 2xday , Plaq and suprax400mg 3xday

if I hadn't over stressed myself at Christmas. Dabs

conn

[Guest guest]

In a message dated 6/25/99 7:17:16 PM Eastern Daylight Time, Dabret22@...

writes:

< From: Dabret22@...

Excellent idea.

Istarted on 2gm rocephinIV and 500amoxicillin 4xday >>

suggestion to all....please mention if you are coinfected...that does change

the mix a bit

Bernadette

[Guest guest]

In a message dated 6/25/99 11:28:50 AM Eastern Daylight Time,

F.Byron@... writes:

<< I was thinking that it might be a good idea for everyone to write in

telling which meds and at what dosages and taking them for how long, helped

them. >>

Hi. I began with symptoms of Lyme Disease on May 24, 1999. I started 2 mg of

Rocephin given through a MidLine IV and since seeing my Lyme Literate Doc

today, I have another 30 days supply. I also have a yogurt every morning, a

multivitamin and a vitamin B-complex. I've cut way back on alcohol and

caffeine intake and I'm working on the nicotine, LOL.

, New Bedford, MA.

<A HREF= " http://members.tripod.com/LymeDizzez/ " >Lyme Disease and Me</A>

ICQ # 26791014

Need a new FREE E-mail Address: www.phlexmail.net

[Guest guest]

larryyenko wrote:

>

> ÿþ<

Dear Larry: This is what your messages look like to my computer. Is

there another way for you to communicate?

Lovette

[Guest guest]

My e-mail address is larry@....

Larry (NV)

[Guest guest]

In a message dated 6/25/99 3:32:52 PM Eastern Daylight Time, WISHXXX@...

writes:

> I think this is an excellent idea except we all have such varying

> symptoms. I had mostly fatigue, muscular pain, liver ,spleen and heart

> involvment. The combo that finally brought me to a " symptomless "

condition

> was 500 miligrams of Biaxin twice a day and ? of Plaquenil twice a day.

> After three months I had no symptoms at all. Stayed on it for six months

> total. Hope this can help someone. Mona

Hi Mona

how long before noticing an improvement; maybe this can be included in

people's responses---if it is possible, please/

thank you

lea

PS I would like to thank all who answer to my questions---I just try not to

write a thank you after an answer (but always when I post)as to have less

e-mail coming in.

[Guest guest]

Byron I have basically been on a million meds and had different reactions

Here is a short list and the years the meds pertain to.

93-IV rocephin 6 weeks Remission 8 months

94 or so-IV claphoran 6 weeks followed by oral zithromax 3 months Remission

8months to a year

95- Bicillin 14 weeks followed by and combined with zithromax and Amantadine

6months Remission 1 year and a half

end of 96 Amoxicillin and probeniced 6months Remission 8 months

summer 97 Zithro/Amantadine 6 months remission 1 year!!

Summer 98 Nothing has worked anymore Have tried Zithro, Amantadine,

Plaquinel, Biaxin, Doxy, Ceftin, Bicillin shots, IV Cefobid still screwed up,

Functioning anywhere from 50-70 % better depending on the day.

Hope this helps -Val (LI, NY)

[Guest guest]

Dear BratDet,

What does coinfected mean ? thanks, Dabs conn

[Guest guest]

--- Byron White <F.Byron@...> wrote:

> Hi everyone...

>

> I was thinking that it might be a good idea for

> everyone to write in telling which meds and at what

> dosages and taking them for how long, helped them. I

> would like to compile these and make a list . There

> are so many different ways peolple are being treated

> and so many variations it is hard to know what to

> do? And what will work?

>

> I appreciate your help on this one... I will compile

> it and make it available to everyone...

>

> Thanks...Byron(ca)

> Byron-

Sounds like a good idea to me.

I have only been on abx since May so my list is short and am still too

new into it that I cant say that I have had a real sucess but here

goes:

Sep 98-200mg Doxy/day. Did nothing.

April 99- 3 gms oral Amoxicillin and 250mg Probenecid for one week then

6 gms Amoxicillin and 250 mg Probenecid for one week. This was while we

were awaiting approval for the IV Rocephin. One week into the

Amoxicillin I had severe back pain, increased fatigue and big time

brain fog.

May 99-Started IV Rocephin 2 gms a day. Also having increased back pain

and knee pain now. Fatigue is bad now but was improving slightly a few

weeks ago. Also fever since starting it. At beggining of Rocephin had

increased chest pain while doing infusion.(Was not diluted enough) Now

having increased chest pain and severe headache,as well as fever,severe

back pain and fatigue and once again the fog. I am starting week 6.

Along with the abx I take the supplements recommended by Dr. B.

L(MI)

_________________________________________________________

[Guest guest]

In a message dated 6/25/99 11:12:34 PM Eastern Daylight Time,

Dabret22@... writes:

<< Dear BratDet,

What does coinfected mean ? thanks, Dabs conn

>>

if you also have erlichiosis or babeosis in addition to Lyme..you are

considered coinfected...those are the main two you see with

Lyme....co-infection simply described means you are fighting 2 infections at

the same time......Dr. B. has pointed out that the large % of pts. he sees

with " Chronic Lyme " are later found to be positive for another infection

besides Lyme.....it makes treating Lyme more difficult...B

[Guest guest]

In a message dated 6/25/1999 9:36:46 PM Eastern Daylight Time, Memyo@...

writes:

<< how long before noticing an improvement; >>

Slight improvement within 3 weeks and it progressed over the next 2 1/2

months.

[Guest guest]

Lovette,

Are you saying you get no text at all from him, just that little sign

thing? I see his messages OK on my MS Outlook express program. What

browser are you using.

Marta,

NJ

>From: " F. Mott " <smott@...>

>

>larryyenko wrote:

>>

>> ÿþ<

>Dear Larry: This is what your messages look like to my computer. Is

>there another way for you to communicate?

>

>Lovette

>

[Guest guest]

Hi Lea,

-

>From: Memyo@...

>PS I would like to thank all who answer to my questions---I just try not to

>write a thank you after an answer (but always when I post)as to have less

>e-mail coming in.

This is an excellent idea, I don't know about everyone else, but I am

getting overwhelmed with messages....I know, I could switch to the digest

type, but I like this way better, easier for me to reply.

I guess it is part of the Lyme thing, we want to participate, but have

limitations, and really long messages, or really short ones can give us a

headache. I know as co-moderator, we have lots of people join and

unsubscribe because of the huge volume of mail, not much I can do about it

though as we have well over 150 subscribers now, so we must be doing

something right. I just think we should all keep in mind that if we

eliminate " Thank you " type messages, or include them in another email we

send, it will cut down on all the messages. Ut Oh, now we have two things

to remember, no short messages, and type where you live after your

signature....we're in trouble....oh heck with it, write what ever you

want...LOL!

Hugs,

Marta, NJ

[Guest guest]

J & M McCoy wrote:

>

> From: " J & M McCoy " <mlmccoy@...>

>

> Lovette,

> Are you saying you get no text at all from him, just that little sign

> thing? I see his messages OK on my MS Outlook express program. What

browser are you using?

Marta: I am using Netscape. All I get is that little sign thing!

Lovette

[Guest guest]

Hi Marta,

I, too, only get that " little sign thing " ...never happens w/ anything

else... I am not on a computer, but WebTV, so I don't know which program

they use. Oh, well...Joan LI, NY

[Guest guest]

Lovette,

If you can't read the text change your colour preferences to see if it will

come out. I was getting that kind of a response.

Holly

F. Mott wrote:

> From: " F. Mott " <smott@...>

>

> J & M McCoy wrote:

> >

> > From: " J & M McCoy " <mlmccoy@...>

> >

> > Lovette,

> > Are you saying you get no text at all from him, just that little sign

> > thing? I see his messages OK on my MS Outlook express program. What

> browser are you using?

>

> Marta: I am using Netscape. All I get is that little sign thing!

>

> Lovette

>

> ---------------------------

[Guest guest]

Mona, I was wondering if you could tell me what kind of liver involement you

had. I have had elevated liver enzymes for over two weeks and the doc took me

off all medication. He thinks it was from the medication but when he tested

me again after the first week med free my enzymes still actually went up

more. Can you tell me what your experiance with this was. i would really

appreciate it. i know Lyme can affect the liver and I am tryign to figure out

if it is from the lYme or all of the meds. Hope you are FEELING

GRRRRRREAT!!!-Val