RE: Lupus and ABX and IVIG

[Guest guest]

I saw Dr Kadar for IVIG tx for about 18 months. My IgG count was above

normal and at that point in time the ins co agreed to pay for IVIG , even

though it was experimental. I stopped on my own accord because I didn't

feel it was helping me (I think it was making my GI problems worse but I can

be wrong). It did, however, make my IgG count go to normal: go figure! I

kind of wish I could try it again but I doubt my ins would cover it now.,

esp since my IgG;s are in the normal range as it most of my blood work. But

I suffer from awful fatigue and weakness and even the doxy treatment with Dr

Whitman hasn't helped that. Dr Kadar no longer has an office in NYC and

from what I hear he maybe semi-retired working only a day a week or so I Mt

Kisco. He was very good to me but he doesn't take Medicare anymore so I

haven't seen him in a couple of years.

I've been on Prednisone since 1995 and can't seem to get off of it. My

adrenal gland failed and I passed out about 2 years ago when I was on 4 mgs

every other day. Now I am down to 3.5 mgs every day and like I said I feel

so weak and fatigued. I wish I never went on Prednisone L It probably has

interfered with my doxy tx.

Anyone have any suggestions for horrible fatigue or adrenal gland problems?

Carol E in NY

From: rheumatic [mailto:rheumatic ] On Behalf

Of DEBBIE GIBSON

Sent: Thursday, February 21, 2008 1:03 PM

support group

Subject: rheumatic Lupus and ABX and IVIG

Just a few thoughts on these posts:

Re Lupus and minocin, I have known several Lupus patients, that were on this

board, not sure if they still are, I never see them post but know that they

did very well on minocin for their Lupus...I believe one did see DR T in

Boston. (her name was Socjog)

Re IVIG...I saw a DR. Avraham Khadar, in NYC re my disease and to discuss if

IVIG would help with my disease process...(SD and RA) and he said my numbers

(referring to my lab work) did not indicate that IVIG would help me and

further, that it would be a huge, massive battle with my insurance company

as the numbers did not support IVIG treatment. Having said that, I do know

of one woman, on this BB that has received IVIG for years...and seems to be

doing well. She also has seen DR. Khadar.

I believe he has in office in NYC and we saw him in the Mt. Kisco office...I

believe...

Hope this helps.

Debbie

[Guest guest]

Have you had your thyroid free t's tested? My adrenals are very poor,

but do much better now that my thyroid and other adrenal hormones are

supported. What I learned is that thyroid and adrenals rely on each

other... when one goes south, then the other is at risk.

I have Hashimoto's and had to rely on tests for _free t's_ rather than

other thyroid tests. Based on my experience, people should not rely on

tsh as this is not a reliable marker for how one's thyroid is doing...

especially when your immune system is wacky.

Other hormones from the adrenals have helped, such as progesterone, and

testosterone. The adrenals make those too, and believe me a deficiency

there will also contribute to fatigue. Finally, the doctor yesterday

told me that when your thyroid hormones are low, more of iron is

excreted in the urine... many hypothyroid people become anemic. Since

iron carries oxygen to the brain, etc, this will also cause fatigue.

Amy

Carol Esposito wrote:

>

>

> Anyone have any suggestions for horrible fatigue or adrenal gland

> problems?

>

> Carol E in NY

>

[Guest guest]

Carol, thanks for the info on Dr. Khadar. I appreciate it very much. When I saw

him, it was several years ago...and I really liked him as well, was very good to

me! Spent about 6 hrs with me. I would go see him again...if necessary...I

wonder about IVIG...if I should be cked again...do you know what labs the Drs

look at to see if you need IVIG?

Debbie

rheumatic Lupus and ABX and IVIG

Just a few thoughts on these posts:

Re Lupus and minocin, I have known several Lupus patients, that were on this

board, not sure if they still are, I never see them post but know that they

did very well on minocin for their Lupus...I believe one did see DR T in

Boston. (her name was Socjog)

Re IVIG...I saw a DR. Avraham Khadar, in NYC re my disease and to discuss if

IVIG would help with my disease process...(SD and RA) and he said my numbers

(referring to my lab work) did not indicate that IVIG would help me and

further, that it would be a huge, massive battle with my insurance company

as the numbers did not support IVIG treatment. Having said that, I do know

of one woman, on this BB that has received IVIG for years...and seems to be

doing well. She also has seen DR. Khadar.

I believe he has in office in NYC and we saw him in the Mt. Kisco office...I

believe...

Hope this helps.

Debbie

[Guest guest]

Debbie,

Allergist/immunologist (like Dr Kadar) and perhaps a rheumatologist can

check your IgG levels and their subclasses. Debbie, I think you know

who sees Dr Kadar in NY and she would probably be better able to tell you

better about Dr Kadar and the IgG's. Bit if I can be of any further help,

please let me know.

Carol E from NY

From: rheumatic [mailto:rheumatic ] On Behalf

Of DEBBIE GIBSON

Sent: Friday, February 22, 2008 9:56 AM

rheumatic

Subject: Re: rheumatic Lupus and ABX and IVIG

Carol, thanks for the info on Dr. Khadar. I appreciate it very much. When I

saw him, it was several years ago...and I really liked him as well, was very

good to me! Spent about 6 hrs with me. I would go see him again...if

necessary...I wonder about IVIG...if I should be cked again...do you know

what labs the Drs look at to see if you need IVIG?

Debbie

rheumatic Lupus and ABX and IVIG

Just a few thoughts on these posts:

Re Lupus and minocin, I have known several Lupus patients, that were on this

board, not sure if they still are, I never see them post but know that they

did very well on minocin for their Lupus...I believe one did see DR T in

Boston. (her name was Socjog)

Re IVIG...I saw a DR. Avraham Khadar, in NYC re my disease and to discuss if

IVIG would help with my disease process...(SD and RA) and he said my numbers

(referring to my lab work) did not indicate that IVIG would help me and

further, that it would be a huge, massive battle with my insurance company

as the numbers did not support IVIG treatment. Having said that, I do know

of one woman, on this BB that has received IVIG for years...and seems to be

doing well. She also has seen DR. Khadar.

I believe he has in office in NYC and we saw him in the Mt. Kisco office...I

believe...

Hope this helps.

Debbie

[Guest guest]

Amy,

Thanks for the info. I thin they just tested my TSH and not free T. I will

check on that. I know I have to go for a good bloodwork up!

Carol

From: rheumatic [mailto:rheumatic ] On Behalf

Of Amy

Sent: Friday, February 22, 2008 7:40 AM

rheumatic

Subject: Re: rheumatic Lupus and ABX and IVIG

Have you had your thyroid free t's tested? My adrenals are very poor,

but do much better now that my thyroid and other adrenal hormones are

supported. What I learned is that thyroid and adrenals rely on each

other... when one goes south, then the other is at risk.

I have Hashimoto's and had to rely on tests for _free t's_ rather than

other thyroid tests. Based on my experience, people should not rely on

tsh as this is not a reliable marker for how one's thyroid is doing...

especially when your immune system is wacky.

Other hormones from the adrenals have helped, such as progesterone, and

testosterone. The adrenals make those too, and believe me a deficiency

there will also contribute to fatigue. Finally, the doctor yesterday

told me that when your thyroid hormones are low, more of iron is

excreted in the urine... many hypothyroid people become anemic. Since

iron carries oxygen to the brain, etc, this will also cause fatigue.

Amy

Carol Esposito wrote:

>

>

> Anyone have any suggestions for horrible fatigue or adrenal gland

> problems?

>

> Carol E in NY

>

[Guest guest]

Well, check free T's, but I would also ask for iron panel (with

ferritin) and for free progesterone, free testosterone. At least you

can rule these out. I hope something shows up.

Amy

Carol Esposito wrote:

>

> Amy,

>

> Thanks for the info. I thin they just tested my TSH and not free T. I will

> check on that. I know I have to go for a good bloodwork up!

>

> Carol

>

[Guest guest]

*Has anyone had an injection of of AB in a joint? I see from the FAQ

page at rheumatic.org the following:

INJECTING THE JOINT McPherson Brown, M.D. et al in Antimycoplasma

Approach to the Mechanism and the Control of Rheumatoid Disease from

Inflammatory Diseases and Copper, The Humana Press 1982 states:

'Intraarticular injections of clindamycin have been very effective when

the reactive state of the joint is so intense that penetrance (of the

antibiotic) is not achieved by the oral or IV route. The inflammation

must be reduced in most instances for maximum clindamycin effect. The

usual treatment plan for large joints, clindamycin 300 mg, plus

dexamethasone 4 mg. A reduced amount of the same combination of these

medications is used for smaller joints.'

Also, there is some bit about copper, which I don't fully understand.

Not long ago, I learned that vitamin C lowers copper. I had been taking

a lot of vitamin C & was having particularly painful days. So, after

reading this, I took a copper supplement. My pain actually subsided

quite a bit. I tried it again the next day, and again the pain

subsided. I guess it was the 4th day of this that I could no longer

perceive a benefit. Anyone have any experience or information about copper?

Amy*

[Guest guest]

That's the first time I have heard of injecting a joint with Clindamycin.

Thanks for writing about it. I would love for someone to inject the middle

joints of my thumbs. They are soooo deformed (fat and crooked).

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

----- Original Message -----

From: " Amy " <Evanesce@...>

Sent: Saturday, February 23, 2008 10:32 AM

> *Has anyone had an injection of of AB in a joint? I see from the FAQ

> page at rheumatic.org the following:

Amy, when I was on the AP, I had both elbows injected with this formula,

reducing the inflammation dramatically. .

Ethel

>

> INJECTING THE JOINT McPherson Brown, M.D. et al in Antimycoplasma

> Approach to the Mechanism and the Control of Rheumatoid Disease from

> Inflammatory Diseases and Copper, The Humana Press 1982 states:

> 'Intraarticular injections of clindamycin have been very effective when

> the reactive state of the joint is so intense that penetrance (of the

> antibiotic) is not achieved by the oral or IV route. The inflammation

> must be reduced in most instances for maximum clindamycin effect. The

> usual treatment plan for large joints, clindamycin 300 mg, plus

> dexamethasone 4 mg. A reduced amount of the same combination of these

> medications is used for smaller joints.'

>

> Also, there is some bit about copper, which I don't fully understand.

> Not long ago, I learned that vitamin C lowers copper. I had been taking

> a lot of vitamin C & was having particularly painful days. So, after

> reading this, I took a copper supplement. My pain actually subsided

> quite a bit. I tried it again the next day, and again the pain

> subsided. I guess it was the 4th day of this that I could no longer

> perceive a benefit. Anyone have any experience or information about

> copper?

>

> Amy*

>

>

>

[Guest guest]

My Dad used to get cortisol shots in his knee, and they would help for three

to six months if I am remembering right. I got one in my ankle that took

the swelling down and lasted for years --still not swollen like it was--or

painful like it was. But the swelling of the ankle started after extensive

foot

surgery, so I'm sure the healing of the foot made a difference in my ankle,

too. I'll think good thoughts for you that your wrist will heal.

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

I had an injection in my wrist last Wednesday with cortisol. I didn't

get any AB in the syringe, so I only received half of the formula. I

must say that my whole arm feels much much better. Not 'right' of

course, but much much better! I don't know how long that shot will help.

Amy

kjdel1977@... wrote:

>

> That's the first time I have heard of injecting a joint with Clindamycin.

> Thanks for writing about it. I would love for someone to inject the

> middle

> joints of my thumbs. They are soooo deformed (fat and crooked).

>

>

>