Re: No improvement on IV so far...

[Guest guest]

You are in my prayers and I sure hope that you start seeing some improvement with the new antibiotic. This is a horrible disease, but it can be beat! Lots of people have, and I've heard that it takes a really long time. I am still trying to beat this disease also! Take care, Kim S.Take care and have a nice day !!! kimsak2000@...

[Guest guest]

Jim,

I'm so sorry to hear that the new treatment is not working. Please don't

give up hope. It sounds as if ou have a good LLMD workign on your side. I

will definitley keep you in my thoiughts.

The human spirit is stronger than anything that can

happen to it.

C.

[Guest guest]

Jim,

Keep your thoughts positive- 45 days is not long when you consider how long it took to get you ill. My 4 year old son did 19 months of IV Claforan before he was symptom free. If you think about it you may have only bracketed one cycle by now (they cycle every 30 days) and could be having new symptoms from a Herxheimer reaction. If you haven't already, you may also want to discuss with your doctor the addition of an oral antibiotic(Zithromax for example) that is effective against forms of Lyme disease bacteria besides the spirochete such as the cell wall deficient form.

Also important to make sure that you are doing adequate yeast prevention. Suffering from yeast infections can present many symptoms.

We have found Stoneyfield Farm yogurt to contain the most beneficial strains of helpful bacteria with natural benefit of organics, no dye or extra sugar to feed what you are trying to prevent. Also Flora source is the brand of acidophilus with the most strains and they will mail it right to your door where it is best to refrigerate it - the number to order it is (800) 914-6311.

Best wishes to you and remember you are not in it alone-

Edina

[ ] No improvement on IV so far...

Well, after 45 days of Claforan, and now almost 40 days of IV Doxy, I am not improved. My doc is talking about IV Vancomycin, after a short break from the abx. I guess any hope for a remission with this thing is vanishing quickly. I'm on all of this high powered medicne and still have new symptoms cropping up. My last 2 LUAT's have been off of the charts, both in the 90's in spite of abx. I am losing hope, although I'm still going to battle this thing with all I have. I know 2 Lyme patients here locally that are in terrible shape, neither can walk unassisted, the other cannot talk or eat without a tube now. I am frightened, needless to say, because I see myself in their faces. They have tried everything, and have not been able to stop the advance of this disease. I've heard it said that God cannot greatly use some one He has not deeply hurt. Well, I know that there must be alot of Saints in heaven that have suffered through Lyme... Keep us in your prayers!Blessings, Jim in AlHAPPY NEW YEAR!!!Easy Reference:Send a blank email message to: -Unsubscribeegroups - Unsubscribe from the list -Digestegroups - Switch your subscription to a digest format -Normalegroups - Switch your subscription to normalPlease send messages not related to Lyme disease (this includes humor and information about other diseases) to -OfftopicegroupsArchives can be accessed at lyme-aidPlease visit the sister site athttp://clubs./clubs/lymeaidThis is the primary chat site for .

[Guest guest]

I think it was Brite who said her IV rocephin didn't really work until she

was on it for 15 months.

Rita B

[Guest guest]

Hang in there Jim...........believe it or not........three months is not a

long time...........I was on IV for about seven months.........and I know

others that have been on longer...........Has he considered IV Zithromax or

IV Rocephin.........maybe coupled with an oral abx?

I did best on these two IV's and then...........the IV Zith coupled with

oral Tinidazole really got rid of most of my physical

symptoms.........unfortunately I still suffer depression and sleep

disturbance........I know the treatment of this disease is very trial and

error.......but keep searching for the right abx that will kill off your

strain/strains of the bacteria........the answer is out there......you just

haven't found it yet.......Connie nwnj

Leave no stone unturned.......

[Guest guest]

Dear Jim,

I've read your post and the many replies. I think that there have

been several very good suggestions by people, and you have good cause

to continue to be optimistic, though I can understand your feelings.

I does sound as if your doctor is good, and his attempt at finding a

medication that you may respond to more quickly demonstrates that.

There are many reasons why some individuals respond to some abx and

not other, which have in part been included in replies to you. I

myself have found that certain combinations which attack in different

ways to be most helpful. What is equally as important is to

determine if there are any other co-infections or other illnesses

that could be compromising your immune system. If there are, you

could feasibly begin to improve, only to fall back shortly after. I

don't know if you've been adequately tested for Babesia,

Ehrlichiosis, etc. I also don't know how long you have been ill, and

have you been seen by a lyme literate rheumatologist to determine if

you are developing lyme-related autoimmune disease. Have you had

workups to rule out viral infections, high yeast concentrations,

etc? Your underlying immune system needs to be intact to work with

abx, and if it has been very compromised, it cannot do that

effectively. All of this doesn't mean that there must be something

else going on, but it may be very productive to find out, as if there

is, your treatment will be compromised. You can begin immediately to

incorporate all of the yeast information that was given to you from

the member who replied as such. This is something anyone on abx

should be doing anyway, regardless of lyme.

I hope you find this helpful, but more importantly, I hope you can

renew your hope. I understanding loosing it at times.

Sincerely,

neurochem1@...

[Guest guest]

hang in jim i am still on an IV have been for almsot 2 1/2 years when i

would go off them i would bottom out again... had horrid reactions too all

of them had to take steriods intermitently every classification i reacted

terribly too for me i dont think ther is hope but i am NOT GIVING UP!!!!!!

CAUSE I WILL BEAT THIS STUFF!!!! My sons also will beat it i am currently

looking to other things which is my choice when my research is complete and

i have turned all the stones i will let you all know whaT IT IS AND

esp>><>>>>>> IF IT WORKS

GOOD LUCK AND GOD BLESS

cindy in mi

>From: " ConnieK " <conniek@...>

>Reply- egroups

>< egroups>

>Subject: Re: [ ] No improvement on IV so far...

>Date: Sat, 6 Jan 2001 19:48:06 -0500

>

>Hang in there Jim...........believe it or not........three months is not a

>long time...........I was on IV for about seven months.........and I know

>others that have been on longer...........Has he considered IV Zithromax or

>IV Rocephin.........maybe coupled with an oral abx?

>I did best on these two IV's and then...........the IV Zith coupled with

>oral Tinidazole really got rid of most of my physical

>symptoms.........unfortunately I still suffer depression and sleep

>disturbance........I know the treatment of this disease is very trial and

>error.......but keep searching for the right abx that will kill off your

>strain/strains of the bacteria........the answer is out there......you just

>haven't found it yet.......Connie nwnj

>Leave no stone unturned.......

>

_________________________________________________________________

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[Guest guest]

>

> hang in jim i am still on an IV have been for almsot 2 1/2 years

when i

> would go off them i would bottom out again... had horrid reactions

too all

> of them had to take steriods intermitently every classification i

reacted

> terribly too for me i dont think ther is hope but i am NOT GIVING

UP!!!!!!

> CAUSE I WILL BEAT THIS STUFF!!!! My sons also will beat it i am

currently

> looking to other things which is my choice when my research is

complete and

> i have turned all the stones i will let you all know whaT IT IS AND

> esp>><>>>>>> IF IT WORKS

> GOOD LUCK AND GOD BLESS

> cindy in mi

>

> Thanks Cindi!

Yes, I relapse as well, to terrible depths, then start the long slow

climb up. I am on a 5 day abx vacation right now, and am doing

poorly. I am still dragging my tail to work, considering short term

disability, will talk to my doc re: this next week. I think I need

rest more than anything right now. If you find the majic bullet,

SHARE IT!

Jim

[Guest guest]

Jim-

I am sure you are seeing the same dr. that a good friend of mine is.....

and Caffey, sound familiar?? Caffey has written me about you, I think. Jim, I

really feel there is panic and it could be a little premature. It sounds as

though you have only been on meds. for 90 days....? It takes YEARS of

treatment, you will see and feel new symptoms but that does not necessarily

mean you are getting worse. Things " come and go " . Last winter, 1 yr ago, I

woke up and had severe pain, sciatica (sp?) and it was so bad I could not sit

for 6 wks. I went to massage therapy, accupuncture, drugs, etc. and NOTHING

helped. Six wks. later I woke up, completely gone, NO REASON!!!!! The

treatment for lyme varies so vastly because there are over 300 species, some

have co-infections, some don't, our immune systems are all different, our

age, genetics, etc. So what I have found that works it to treat oneself

individually. I am NOT a dr. and don't pretend to be but I have alot of

chronic people in my family, husband, 2 of my 6 kids, me, my mom, dad,

step-mom, 3sisters, their husbands, their kids (8-10), and 18 people on my

block, over 2,500 people that write to me, several new ones every day that I

meet, etc. When someone has this kind of exposure, the same story seems to

pop up over and over.

I would get my immune system in top shape, take some Colostrum (excellent!!),

magnesium, B vits., C, anti-oxidents (there are cos. --which I can recommend

privately-- that have excellent multi-packs that have all in them--vits. and

minerals, enzymes, phytonutrients, antioxidents, essential fatty acids). I

have found that Rx PLUS alternative meds. together really do the job. Just my

2 cents worth.

I also believe (w/out getting too philosophical) that if one has Faith in God

and the Holy Spirit, you are going to get alot farther with this disease; it

sure has helped me. I have had the right people put in my path at the right

times, I don't consider it just a coincidence. I believe the underlying theme

of sickness is to learn to be more compassionate and loving for fellow

man--to help one another instead of the selfish society we are in. It sure

has helped me to open my heart and help. What comes around, goes

around....that is my philosophy.

God bless. If I can help in any way, please e-mail me privately.

sue in nj

[Guest guest]

I understand what your going through and there is light at the end of the

tunnel.My last LUAT was >400 and I was devistated.I have been on IV rocephin

twice and thought it was doing no good but 2 1/2 yaers later I am much

better.Still on 4 different types of meds but at least I feel pretty

good.Just hang in there.It takes alot of time and meds to get back to a

functionable life.I get so mad about all of this but there is nothing I can

do but have a positive attitude and be thankful it did not kill me or my two

who are also on 4 different meds for lyme before I got the correct

treatment.Love ya much Janet

>From: " Jim " <jschm47974@...>

>Reply- egroups

> egroups

>Subject: [ ] No improvement on IV so far...

>Date: Sat, 06 Jan 2001 16:13:16 -0000

>

>Well, after 45 days of Claforan, and now almost 40 days of IV Doxy, I

>am not improved. My doc is talking about IV Vancomycin, after a

>short break from the abx. I guess any hope for a remission with this

>thing is vanishing quickly. I'm on all of this high powered medicne

>and still have new symptoms cropping up. My last 2 LUAT's have been

>off of the charts, both in the 90's in spite of abx. I am losing

>hope, although I'm still going to battle this thing with all I have.

>I know 2 Lyme patients here locally that are in terrible shape,

>neither can walk unassisted, the other cannot talk or eat without a

>tube now. I am frightened, needless to say, because I see myself in

>their faces. They have tried everything, and have not been able to

>stop the advance of this disease. I've heard it said that God cannot

>greatly use some one He has not deeply hurt. Well, I know that there

>must be alot of Saints in heaven that have suffered through Lyme...

>Keep us in your prayers!

>

>Blessings, Jim in Al

>

>

>

_________________________________________________________________

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[Guest guest]

Dear Sue,

I know you are very busy, but I would really appreciate info on the Rife

machine. Have been on and off IV abx for 3 years now and still getting worse

(am pulsing Zithromax right now). I am on the point of applying for

permanent disability because I just cant get into work, and when I do I

cant' think straight. Taking most of the other stuff you recommend, eg

colostrum etc, though olive leaf herx me so badly haven't been able to take

it consistently. So, if you could take a minute and send me the info on the

Rife I would really appreciate it.

thanks,

Val

[Guest guest]

OOPS...Can you say Lyme fog? thought I was sending this to Sue...Slinking

away in embarassment....

> RE: [ ] No improvement on IV so far...

>

>

>

>

> Dear Sue,

>

> I know you are very busy, but I would really appreciate info on the Rife

> machine. Have been on and off IV abx for 3 years now and still

> getting worse

> (am pulsing Zithromax right now). I am on the point of applying for

> permanent disability because I just cant get into work, and when I do I

> cant' think straight. Taking most of the other stuff you recommend, eg

> colostrum etc, though olive leaf herx me so badly haven't been

> able to take

> it consistently. So, if you could take a minute and send me the

> info on the

> Rife I would really appreciate it.

> thanks,

> Val

>

>

> HAPPY NEW YEAR!!!

>

> Easy Reference:

> Send a blank email message to:

>

> -Unsubscribeegroups - Unsubscribe from the list

> -Digestegroups - Switch your subscription to a digest format

> -Normalegroups - Switch your subscription to normal

>

> Please send messages not related to Lyme disease (this includes

> humor and information about other diseases) to

> -Offtopicegroups

>

> Archives can be accessed at lyme-aid

>

> Please visit the sister site at

> http://clubs./clubs/lymeaid

> This is the primary chat site for .

>

>

>