Re: Digest Number 683

[Guest guest]

Good morn. to all,

My prayers are off to both Carolyns. I also want to say my sis, JoAnn

has CMT & Diabetes & had several HPBO treatments, here in Valparaiso,

Indiana as she had an ulcer on her left foot. Doctor said her foot ulcer

was not due to Diabetes, but the CMT. The treatments helped enormously.

She still has to stay off the foot a lot, but thank God she stll has it.

She had 3 different infections in it. also Sara Jane & Pam, I am 35

miles from Chicago, but we don't have any support groups nearby either.

Our Neuologist told us w/ such a large family, we should start one. I am

going to do just that!! I am also going to the MDA Clinic in Feb. I am

tired of my feet hurting sooo bad sometimes I want them cut off !!! Then

I think of the people who don't have feet & feel so blessed that I do,

so am starting the New Year out & doing something about it! If I can

getAFO'S to stop the hurting than I AM !!!!! Take care all, & God Bless,

Patsy

[Guest guest]

I lived in pretty constant pain until I had my rods removed. I also had

fusion to S1 grom L5 and I now lean way over but there is NO pain and that

trade-off was woth it.

[Guest guest]

Dear ,

Why do you lean way over? Do you have flatback? Or aren't the rods

" holding " you up? I can understand that the pain trade-off was worth it,

but isn't there something you can do to be more upright - like PT? I

realize that this is none of my business so if you don't feel like

answering that's ok. I was just curious as to why rod removal would make

you lean forward..... Excuse me if I've not been very tactful.... but my

rods were removed when I had flatback salvage surgery and I'm a little

worried about the upper one. I'm not leaning over yet... and there IS

hardware in the lumbar area so things should be OK - still I'm a little

leary of the future. Thanks for any light you can shed on this.

from Italy

[Guest guest]

Pris,

I was Dx'd about 2.5 yrs ago. I take Methotrexate 15mg week injections, Enbrel injections twice a week, Prednisone 5mg, Bextra 20mg, Folic acid, Leukovorin, Multi-vitamin, calcium/vit D. This is just what I take for RA. I have left off all my other meds for allergies and such. As far as pain...I take Tylenol, Ultram or Darvocet when needed which is pretty rare I need to take the Darvocet.

Toni

In a message dated 4/27/04 1:06:28 PM Central Daylight Time, Rheumatoid Arthritis writes:

Message: 1

Date: Sat, 24 Apr 2004 23:53:43 EDT

From: NELLIESTAR@...

Subject: Re: Re: Other people's joints

Is anyone on Humira? What drugs do you also take?

How is it working for you?

Pris

[Guest guest]

I take Humira once every 2 weeks. I have been on it for over a year. Recently I had to go off of it for a short time and it became clear to me that this drug works extremely well for me. Haven't had any noticeable side effects. Yet.

gloria

[Guest guest]

This is how it now looks, when you press reply it says:

No Reply <notify-dg- >

Now the digest has a rich format, any way it does not matter I will just write the address.

Chonette

The malaria bugI thought some of you might be interested in "the battle of the parasite"Having had CLL since 1997, I've had a pretty good ride, and can't complain. However, the babesia blood parasite which I picked up last spring from a tick seems to be here forever. This is particularly sad, because my main illness has been kind to be, and I don't know how much time it will give me. In the meantime, the babesiosis keeps me on the verge of anemia, taking away whatever good time the CLL is still giving me. Ironic........Last winter I took Azythromycin and Mepron (an antimalarial) from October till April. Thinking we had killed the thing, I discontinued the drugs, and in early May I was back down to HGB 8.5, with positive results for the babesia. So, back on the same med regimen, but not much results to date. Now thinking about other medications, making a serum from other people's blood who have babesia antibodies (insanely expensive plus needs FDA approval), Chinese antimalarials, etc. VERY frustrating and, as I said, robbing me of whatever good times I could still have with the CLL.SO, stay away from ticks, my friends. Our immune systems do not do well with these kind of blood invasions.

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3e.

Re: The malaria bug

Posted by: "BUZZ SHINN" shinnbuzz@... shinnbuzz

Sat Jun 24, 2006 11:31 am (PST)

I think Babesia is similar to Ricketsia which gives Rocky mtn spot. fev. Mine was quite unresponsive until a Dr in Philly (infectious disease) perscribed Chloramphenicol a highly dangerous and potent antibiotic. That cured my outbreak and put me on the road to recovery after only 2 shots. Just a thought since my RMSF almost killed me in a week. Good luck and best wishes. buzz

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3f.

Re: The malaria bug

Posted by: "jb50192@..." jb50192@... jcbjcbjcb2000

Sat Jun 24, 2006 3:01 pm (PST)

Thanks to those of you who responded to my bug story, and offered suggestions. The fault, of course, is definitely the impaired immune system, otherwise it should be a matter of 14 days, and that's it. I am very concerned that it might become chronic, so I'm ready to consider anything brought to my attention. Even a rough cure but be better than having this thing hang around. - There used to be an earlier TX, using quinine and clindomycin. Now they use Azythromiycin and Mepron, but I heard about one chronic case that was cured by taking all four drugs simultaneously!! Wow!

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3g.

Re: The malaria bug

Posted by: "Carolyn Swift" swift_carolyn@... swift_carolyn

Sun Jun 25, 2006 5:35 am (PST)

- I'm sorry you are still having trouble with theparasite. Hang in there. We need you very much.Carolyn--- jb50192aol wrote:> I thought some of you might be interested in "the> battle of the parasite"> > Having had CLL since 1997, I've had a pretty good> ride, and can't complain. > However, the babesia blood parasite which I picked> up last spring from a tick > seems to be here forever. This is particularly sad,> because my main illness has > been kind to be, and I don't know how much time it> will give me. > > In the meantime, the babesiosis keeps me on the> verge of anemia, taking away > whatever good time the CLL is still giving me.> Ironic........> > Last winter I took Azythromycin and Mepron (an> antimalarial) from Ocotber > till April. Thinking we had killed the thing, I> discontinued the drugs, and in > early May I was back down to HGB 8.5, with positive> results for the babesia. So, > back on the same med regimen, but not much results> to date. Now thinking > about other medications, making a serum from other> people's blood who have babesia > antibodies (insanely expensive plus needs FDA> approval), Chinese > antimalarials, etc. > > VERY frustrating and, as I said, robbing me of> whatever good times I could > still have with the CLL.> > SO, stay away from ticks, my friends. Our immune> systems do not do well with > these kind of blood invasions.> > > __________________________________________________

[Guest guest]

I truly do not understand, I changed nothing. Do any others experience difficulty replying in the digest format?

[Guest guest]

Chonette <ch@...> wrote: This is how it now looks, when you press reply it says: No Reply <notify-dg- > Now the digest has a rich format, any way it does not matter I will just write the address. Chonette ----- Original

Message ----- From: Sent: Sunday, June 25, 2006 2:54 PM Subject: Digest Number 683 Messages In This Digest (13 Messages) 1. Re: Steve - From: jb50192@... 2. Re: Back to bug bites, Its working again. - Steve From: jb50192@... 3a. The malaria bug From: jb50192@... 3b. The malaria bug From: jb50192@... 3c. Re: The malaria bug From: Fred Hummel 3d. Re: The malaria bug From: Lori Dobbins 3e. Re: The malaria bug From: BUZZ SHINN 3f. Re: The malaria bug From: jb50192@... 3g. Re: The malaria bug From: Carolyn Swift 4. Re: question regarding insurance companies and pmt for services From: MyELLM@... 5. Re: question regarding insurance companies and pmt for services - Ju From: jb50192@... 6. another test From: Chonette 7. Re: another test - Chonette From: jb50192@... View All Topics | Create New Topic Messages 1. Re: Steve - Posted by: "jb50192@..." jb50192@... jcbjcbjcb2000 Sat Jun 24, 2006 9:01 am (PST) Goodness, within 2 days of each other, how very strange. How are you both doing? Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (1) 2. Re: Back to bug bites, Its working again. - Steve Posted by: "jb50192@..." jb50192@... jcbjcbjcb2000 Sat Jun 24, 2006 9:09 am (PST) Our medical advisor (we'll call him MA henceforth, why not?) says this is due to overactive T-cell reaction. I would think a cortisone cream would be appropriate, unless there is an open wound involved. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (1) 3a. The malaria bug Posted by: "jb50192@..." jb50192@... jcbjcbjcb2000 Sat Jun 24, 2006 10:19 am (PST) I thought some of you might be interested in "the battle of the

parasite"Having had CLL since 1997, I've had a pretty good ride, and can't complain. However, the babesia blood parasite which I picked up last spring from a tick seems to be here forever. This is particularly sad, because my main illness has been kind to be, and I don't know how much time it will give me. In the meantime, the babesiosis keeps me on the verge of anemia, taking away whatever good time the CLL is still giving me. Ironic........Last winter I took Azythromycin and Mepron (an antimalarial) from Ocotber till April. Thinking we had killed the thing, I discontinued the drugs, and in early May I was back down to HGB 8.5, with positive results for the babesia. So, back on the same med regimen, but not much results to date. Now thinking about other medications, making a serum from other people's blood who have babesia antibodies (insanely expensive plus needs FDA approval), Chinese antimalarials,

etc. VERY frustrating and, as I said, robbing me of whatever good times I could still have with the CLL.SO, stay away from ticks, my friends. Our immune systems do not do well with these kind of blood invasions. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (7) 3b. The malaria bug Posted by: "jb50192@..." jb50192@... jcbjcbjcb2000 Sat Jun 24, 2006 10:30 am (PST) I thought some of you might be interested in "the battle of the parasite"Having had CLL since 1997, I've had a pretty good ride, and can't complain. However, the babesia blood parasite which I picked up last spring from a tick seems to be here forever. This is particularly sad, because my main illness has been kind to be, and I don't know how much time it will give me. In the meantime, the babesiosis keeps me on the verge of anemia, taking away whatever good time the CLL is still giving me. Ironic........Last winter I took Azythromycin and Mepron (an antimalarial) from October till April. Thinking we had killed the thing, I discontinued the drugs, and in early May I was back down to

HGB 8.5, with positive results for the babesia. So, back on the same med regimen, but not much results to date. Now thinking about other medications, making a serum from other people's blood who have babesia antibodies (insanely expensive plus needs FDA approval), Chinese antimalarials, etc. VERY frustrating and, as I said, robbing me of whatever good times I could still have with the CLL.SO, stay away from ticks, my friends. Our immune systems do not do well with these kind of blood invasions. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (7) 3c. Re: The malaria bug Posted by: "Fred Hummel" fch@... Sat Jun 24, 2006 11:14 am (PST) That's a bummer, , thought you had it licked. All I can say is , hang in there.Fred Back to top Reply to sender

| Reply to group | Reply via web post Messages in this topic (7) 3d. Re: The malaria bug Posted by: "Lori Dobbins" loridobbins@... ldob63 Sat Jun 24, 2006 11:19 am (PST) Wow, , what a ride! I guess this is what they talk about with it not being the CLL that gets us but some type of infection. My grandma had CLL for around 10 years before it caused her any symptoms. She died in 2000 of an infection in her lungs. I was dx in 2002 and have done pretty good. I had quite a few bouts with shingles. Lately I have been battling bladder infections. I had surgery in December, had a cath put in

and an infection since. As soon as I go off of an antibiotic it comes right back. I'm only 43 and feel like you do with being robbed of my good times! O'well. I'm understanding about the immune system more and more.Take care,Lori The malaria bugI thought some of you might be interested in "the battle of the parasite"Having had CLL since 1997, I've had a pretty good ride, and can't complain. However, the babesia blood parasite which I picked up last spring from a tick seems to be here forever. This is particularly sad, because my main illness has been kind to be, and I don't know how much time it will give me. In the meantime, the babesiosis keeps me on the verge of anemia, taking away whatever

good time the CLL is still giving me. Ironic........Last winter I took Azythromycin and Mepron (an antimalarial) from October till April. Thinking we had killed the thing, I discontinued the drugs, and in early May I was back down to HGB 8.5, with positive results for the babesia. So, back on the same med regimen, but not much results to date. Now thinking about other medications, making a serum from other people's blood who have babesia antibodies (insanely expensive plus needs FDA approval), Chinese antimalarials, etc. VERY frustrating and, as I said, robbing me of whatever good times I could still have with the CLL.SO, stay away from ticks, my friends. Our immune systems do not do well with these kind of blood invasions. Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (7) 3e. Re: The malaria bug Posted by: "BUZZ SHINN" shinnbuzz@... shinnbuzz Sat Jun 24, 2006 11:31 am (PST) I think Babesia is similar to Ricketsia which gives Rocky mtn spot. fev.

Mine was quite unresponsive until a Dr in Philly (infectious disease) perscribed Chloramphenicol a highly dangerous and potent antibiotic. That cured my outbreak and put me on the road to recovery after only 2 shots. Just a thought since my RMSF almost killed me in a week. Good luck and best wishes. buzz Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (7) 3f. Re: The malaria bug Posted by: "jb50192@..."

jb50192@... jcbjcbjcb2000 Sat Jun 24, 2006 3:01 pm (PST) Thanks to those of you who responded to my bug story, and offered suggestions. The fault, of course, is definitely the impaired immune system, otherwise it should be a matter of 14 days, and that's it. I am very concerned that it might become chronic, so I'm ready to consider anything brought to my attention. Even a rough cure but be better than having this thing hang around. - There used to be an earlier TX, using quinine and clindomycin. Now they use Azythromiycin and Mepron, but I heard about one chronic case that was cured by taking all four drugs simultaneously!! Wow! Back to top Reply to sender | Reply to group | Reply via web post Messages in this topic (7) 3g. Re: The malaria bug Posted by: "Carolyn Swift" swift_carolyn@... swift_carolyn Sun Jun 25, 2006 5:35 am (PST) - I'm sorry you are still having trouble with

theparasite. Hang in there. We need you very much.Carolyn--- jb50192aol wrote:> I thought some of you might be interested in "the> battle of the parasite"> > Having had CLL since 1997, I've had a pretty good> ride, and can't complain. > However, the babesia blood parasite which I picked> up last spring from a tick > seems to be here forever. This is particularly sad,> because my main illness has > been kind to be, and I don't know how much time it> will give me. > > In the meantime, the babesiosis keeps me on the> verge of anemia, taking away > whatever good time the CLL is still giving me.> Ironic........> > Last winter I took Azythromycin and Mepron (an> antimalarial) from Ocotber > till April. Thinking we had killed the thing, I> discontinued the drugs,

and in > early May I was back down to HGB 8.5, with positive> results for the babesia. So, > back on the same med regimen, but not much results> to date. Now thinking > about other medications, making a serum from other> people's blood who have babesia > antibodies (insanely expensive plus needs FDA> approval), Chinese > antimalarials, etc. > > VERY frustrating and, as I said, robbing me of> whatever good times I could > still have with the CLL.> > SO, stay away from ticks, my friends. Our immune> systems do not do well with > these kind of blood invasions.> > > __________________________________________________

[Guest guest]

I have had no trouble replying. Carolyn

--- jb50192@... wrote:

> I truly do not understand, I changed nothing. Do any

> others experience

> difficulty replying in the digest format?

>

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