Other options?

[Guest guest]

Hi - questions here -

I started on doxycycline in Feb '05 at 100mg twice a day. After a year with no

obvious results, I switched to minocycline (generic), again 100mg twice daily.

I was able to get on Minocin for awhile, same dosage, but am back on generic

minocycline. It's been a total of nearly 20 months on antibiotics and I can't

say they've helped much. I really do want this to work .. however, it's hard to

keep feeling positive when nothing seems to be happening.

Along with these antibiotics, I've taken other things in order to suppress

enough symptoms so that I could function. I was on plaquenil for awhile, added

prednisone (which gave me a tremendous amount of relief but of course came with

its own side effects). I got down to 10mg of pred every other day, but reducing

it from there resulted in extreme joint problems. In July I went off of the

plaquenil and started enbrel instead and was able to wean off of the prednisone.

Now I'm just on enbrel and minocycline (and some pain meds), but I'm pretty sure

that the only reason I'm able to do things is because of the enbrel. I'm sore

but functioning.

So my questions are: should I be trying a different antibiotic? How long

should I keep trying before I say " it's not going to work for me " ?

And one last question - has anyone ever taken more than the 100mg twice a day?

I have a history of being resistant to drugs, and I have been able to take the

full 100mg BID from the beginning without problems like I hear other people

having. Maybe I am resistant to this and it will take a higher dosage for me?

Any comments or experiences along these lines would be appreciated.

Thank you -

[Guest guest]

rheumatic Other options?

> Hi - questions here -

>

> I started on doxycycline in Feb '05 at 100mg twice a day. After a year with

no obvious results, I switched to minocycline (generic), again 100mg twice

daily. I was able to get on Minocin for awhile, same dosage, but am back on

generic minocycline. It's been a total of nearly 20 months on antibiotics and I

can't say they've helped much. I really do want this to work .. however, it's

hard to keep feeling positive when nothing seems to be happening.

First - Minocin is the drug of choice since so many generics do not work for

these diseases. I remember when we first discovered this fact. We had a number

of people in the group back then who had been on the generic 2 years and longer

with no results. When they switched, they began to see results. If you can't

afford to buy Minocin in the U.S., buy it from Canada.

Second, let me say for some people it can take a long time to see results. We

have a story on our website of a patient with scleroderma that took 7 years to

see remission. I was told it would take me 3 to 5 years to turn around and

that's not remission. A number of years ago there was a woman in the group with

severe, long standing RA about to give up after 5 years on the therapy with no

result. Almost overnight that changed dramatically. Was she ever glad she had

not quit.

In the last several years, we've learned the importance of diet, appropriate

supplements and detoxification in dealing with these diseases. If, as they

say, 70% of immune function takes place in the gut, that is the first place you

need to work on. The problem is most people would rather rely on a pill to

solve all their problems rather than put in the time and effort needed to eat

right and detox the body.

Just yesterday someone posted about a doctor using a new drug for dealing with

organisms " deep " in the bowel - which is where he and doctors at Vanderbilt now

believe MS and scleroderma originate. (And where most likely all these

disease originate.) Dr. Brown, the doctor who pionered this therapy, most

always prescribed an anti-fungal along with the antibiotic.

Also, consider the following:

From the FAQ on www.rheumatic.org

13. I HAVE BEEN ON 100 MG. OF MINOCYCLINE MONDAY, WEDNESDAY AND FRIDAY FOR SIX

MONTHS AND HAVE SEEN NO RESPONSE. CAN I STILL EXPECT IMPROVEMENT?

Yes, however you should have some indication by this time that the antibiotic is

working for you. Your doctor needs to do a little detective work at this point.

Here are some things to check:

a. Laboratory tests should be run again. Often improvement in these tests will

precede improvement of symptoms.

b. If you are on a generic minocycline, change manufacturers or switch to the

brand name. Patients have discovered that not all generic minocycline or

doxycycline is equivalent. Many physicians prescribe the brand name to avoid

this risk.

c. Try a different antibiotic. All patients may not respond to minocycline or

doxycline. Some physicians add Zithromax. If you are taking the minocycline

Monday, Wednesday and Friday, the dose for the Zithromax is 250 mg. twice daily

Tuesday and Thursday.

(Adding an anti-fungal may be necessary. There have been reports of success

using the combination Minocin, Flagyl and Nystatin. The liver should be

monitored closely when using anti-fungals.)

d. Try one antibiotic in the morning and a different one at night, or sequence

them taking one for six weeks and then switching to another for six weeks.

e. If your disease is severe, long standing or very resistant, and you are only

on oral antibiotics, you will need to add intravenous therapy.

f. Look for other sources of infection in the sinuses, allergies, root canals

(www.altcorp.com), intestinal tract, etc. that may be impeding your progress and

must be addressed for optimum benefit from this therapy. The first area to check

is the intestinal tract for candida overgrowth and leaky gut. There are special

labs that perform these tests:

Immuno-Science Lab in Beverly Hills, CA.- candida

www.immuno-sci-lab.com or 1-800-950-4686

AAL Reference Laboratories, Inc. in Santa Ana, CA - candida

www.antibodyassay.com or 1-800-522-2611

Great Smokies Diagnostic Laboratories, Tennessee - candida and the lactulose

mannitol test for leaky gut

www.gsdl.com Ð 1-800-522-4762

g. Were you tested for strep? If the results were positive, treatment should be

prescribed. (See Section 12.) The strep organism can be very difficult to

eradicate, so even after the titer returns to normal, the patient should be

monitored for some time for recurrence. The goal of the therapy is to remove

antigen wherever it may be found in the body in order to achieve optimum benefit

from this therapy.

h. Are you deficient in antibody? Perhaps intravenous immunoglobulin is

necessary.

i. Did your doctor have the mycoplasma test run? It should be run for the entire

panel and not just for M. pneumoniae. The first test may be negative if the

immune system is too weak to mount an antibody attack to the organism.

Therefore, it is important to repeat the test within 3 to 6 months. If it is

still negative, the medication should be changed. The tetracycline antibiotic

still works in some instances of a negative reading. If the cause is viral the

antibiotic therapy may fail. Additionally, the cause could be streptococcus

infection compounded with a mycoplasma infection or vice versa.

Laboratories performing this special mycoplasma testing are listed on this web

site in the section titled 'Information for You and Your Doctor'.

j. Are there hormonal imbalances that need correcting?

k. Chronic neurotoxins may be another reason for lack of response to this

therapy. These toxins are low molecular weight, fat soluble toxins, sequestered

in the adipose tissues of the body. Rather than being eliminated normally, they

are reabsorbed and continue to be accumulated and circulated in the body. They

impact the nervous system, the endocrine system and the immune system. (Patients

report improvement in brain fog and ability to concentrate when these toxins are

removed.) There is a vision test available on the net that can be taken to

determine if neurotoxins are present. For more information visit Dr. Ritchie

Shoemaker's site - www.detoxxbook.com or www.bodybio.com

l. E. Berg, director of Hemex Laboratories in Phoenix, AZ has discovered

that a number of infections, including mycoplasmas, can trigger the blood

clotting system to become active, preventing oxygen and antibiotics from

reaching and destroying the pathogen. This is called hypercoagulation. The Hemex

Lab ISAC panel can be run to determine if this is a problem. If this test is

positive, appropriate blood thinning agents may be prescribed. For more

information go to www.hemes.com or call 1-800-999-2568. Check with your

physician for non-prescription agents that may be appropriate. If a patient has

been experiencing improvement on this therapy and then notices that progress has

stopped or he/she even seems to be regressing, the information in this section

will aid their doctor in determining what is impeding that progress.

>

> Along with these antibiotics, I've taken other things in order to suppress

enough symptoms so that I could function. I was on plaquenil for awhile, added

prednisone (which gave me a tremendous amount of relief but of course came with

its own side effects). I got down to 10mg of pred every other day, but reducing

it from there resulted in extreme joint problems. In July I went off of the

plaquenil and started enbrel instead and was able to wean off of the prednisone.

Now I'm just on enbrel and minocycline (and some pain meds), but I'm pretty sure

that the only reason I'm able to do things is because of the enbrel. I'm sore

but functioning.

Just remember, Enbrel is shutting down the very immune system you need to get

well.

>

> So my questions are: should I be trying a different antibiotic? How long

should I keep trying before I say " it's not going to work for me " ?

>

> And one last question - has anyone ever taken more than the 100mg twice a day?

Not that we are aware of. For many, many years the antibiotic was taken just

once a day M-W-F with excellent results. That is all I took. More is not

necessarily better; plus it can cause more suffering to the patient than is

necessary. The organisms causing these diseases reproduce anywhere from 24 to

48 hours making it unnecessary to even take the antibiotic on a daily basis.

Ethel

I have a history of being resistant to drugs, and I have been able to take the

full 100mg BID from the beginning without problems like I hear other people

having. Maybe I am resistant to this and it will take a higher dosage for me?

Any comments or experiences along these lines would be appreciated.

>

> Thank you -

>

>

>

>

>

[Guest guest]

,

Please share with us the manufacturer of your generic minocycline. Thanks!

Sincerely, Harald

At 04:42 AM 10/26/2006, you wrote:

>Hi - questions here -

>

>I started on doxycycline in Feb '05 at 100mg twice a day. After a

>year with no obvious results, I switched to minocycline (generic),

>again 100mg twice daily. I was able to get on Minocin for awhile,

>same dosage, but am back on generic minocycline. It's been a total

>of nearly 20 months on antibiotics and I can't say they've helped

>much. I really do want this to work .. however, it's hard to keep

>feeling positive when nothing seems to be happening.

>

>Along with these antibiotics, I've taken other things in order to

>suppress enough symptoms so that I could function. I was on

>plaquenil for awhile, added prednisone (which gave me a tremendous

>amount of relief but of course came with its own side effects). I

>got down to 10mg of pred every other day, but reducing it from there

>resulted in extreme joint problems. In July I went off of the

>plaquenil and started enbrel instead and was able to wean off of the

>prednisone. Now I'm just on enbrel and minocycline (and some pain

>meds), but I'm pretty sure that the only reason I'm able to do

>things is because of the enbrel. I'm sore but functioning.

>

>So my questions are: should I be trying a different

>antibiotic? How long should I keep trying before I say " it's not

>going to work for me " ?

>

>And one last question - has anyone ever taken more than the 100mg

>twice a day? I have a history of being resistant to drugs, and I

>have been able to take the full 100mg BID from the beginning without

>problems like I hear other people having. Maybe I am resistant to

>this and it will take a higher dosage for me? Any comments or

>experiences along these lines would be appreciated.

>

>Thank you -

>

>

>

[Guest guest]

I read your post. I have RF positive RA - diagnosed 4/03. Started

on prednisone then added plaquenil, methotrexate and sulfasalazine

taken together (3 different meds) - I was functioning well - but did

have moderate swelling my fingers - otherwise ok - I could take a

walk and walk fast. That all changed in 9/05 - I had to stop all

those drugs becuase of 2 year so up/down liver enzymes. I had to go

back on prednison (I hate pred). I asked my rheumotologist for

Minocin he reluctantly agreed. After taking 5 mg pred and 200 mg

daily of minocin on New Years Day '06 I crashed hard - had severe

debilitating pain/swelling in joints I had not had problems with -

both knees/shoulders/elbows/wrists. I could barely function - could

not raise my arms up at all - I kept them tucked at my side. Slept

in a recliner at night - but that did not help much - my should pain

was horrible. I was also taking ibuprofen 1600 mg daily - and that

was not helping much.

On May 9 I saw Dr. ph Sentef in Chattanooga, TN. (5 1/2 one way

drive) He added Nizoral and Flagy to my Minocin/Prednisone. I

didn't want to overload my system so I started taking the Nizoral

first 200 mg daily. Within 5 days my pain/swelling melted away and

I could function - I could sleep at night/walk up right/open bottled

water. All the pain/swelling in my shoulders/elbows/wrists/hands

went away - my knees were still swollen but no pain. I was so

relieved. I still don't understand what the Nizoral did. Everyone

told me " it could be yeast " and I read the Yeast Connection - but

really didn't believe yeast could be so debilitating - although my

sister swears by the Yeast Connection - she was in bad shape and 10

years age she went on the yeast free diet and she is fine now. I

have spoken by email with a women who used to do research with the

CDC she is very knowledgable about drugs her daughter has JRA - and

is in remission by using a combo of antibiotics including

Minocin/Flagyl/Nizoral and or diflucan/zithromax. She told me that

yes some folks with rheumatic disease benefit greatly from an anti-

fungal like Nizoral or Diflucan and it will get rid of swelling most

notably finger swelling. This is my experience. I think looking

back I was on Minocin for 3 months before the real big pain set in -

when you are on an antibiotic it kills all the good bacteria and

yeast infections can set in and cause additional problems

ie/swelling pain. I take a probioitic daily now.

I am at this one year now and I am much better than before I took

the Nizoral. I still have a good bit of knee swelling and had both

knees injected earlier on October. Over all I am pleased with AP.

Different doctors take different approaches - my AP doc said that

for most people need a combo of antibiotics and antifungals to get

better. I believe that now from talking to others.

I guess I would say - Find out if you AP doc will try a combo of

antibiotics - take a daily probbioitc (this is very necessary when

on antibiotics) other things to control inflammation - I use Carlson

Fish Oil (great antiinflammatory) bromelain to increase the

absorption of minocin.

I hope this helps

>

> Hi - questions here -

>

> I started on doxycycline in Feb '05 at 100mg twice a day. After a

year with no obvious results, I switched to minocycline (generic),

again 100mg twice daily. I was able to get on Minocin for awhile,

same dosage, but am back on generic minocycline. It's been a total

of nearly 20 months on antibiotics and I can't say they've helped

much. I really do want this to work .. however, it's hard to keep

feeling positive when nothing seems to be happening.

>

> Along with these antibiotics, I've taken other things in order to

suppress enough symptoms so that I could function. I was on

plaquenil for awhile, added prednisone (which gave me a tremendous

amount of relief but of course came with its own side effects). I

got down to 10mg of pred every other day, but reducing it from there

resulted in extreme joint problems. In July I went off of the

plaquenil and started enbrel instead and was able to wean off of the

prednisone. Now I'm just on enbrel and minocycline (and some pain

meds), but I'm pretty sure that the only reason I'm able to do

things is because of the enbrel. I'm sore but functioning.

>

> So my questions are: should I be trying a different antibiotic?

How long should I keep trying before I say " it's not going to work

for me " ?

>

> And one last question - has anyone ever taken more than the 100mg

twice a day? I have a history of being resistant to drugs, and I

have been able to take the full 100mg BID from the beginning without

problems like I hear other people having. Maybe I am resistant to

this and it will take a higher dosage for me? Any comments or

experiences along these lines would be appreciated.

>

> Thank you -

>

>

>

>

>

[Guest guest]

.... You did not say what you were diagnosed with. I am assuming

it is RA.

Now, assuming that..... if I were in your shoes I would think about talking

to one of the really experienced docs. If you are not currently seeing such

a doctor, I would get an appointment to one of these specialists and haul

out all my medical records for him to see and comment on. Then see what his

suggestions are. I went to Dr S in Dalton Ga, but I know there are several

out there in the midwest, boston and california that specialize in AP. It

would be worth the $$$ to get some input from someone who really deals with

antibiotic therapy full time. Then you can return to your regular doc with the

new evaluation of what to do. Many docs are much more willing to try something

new if they have a plan from the " specialist " . Just a thought ....Martha

[Guest guest]

>

> Bee,

For me, your diet takes so much mental and emotional energy to

always be preparing and cooking, I am just exhausted, and I do not

feel satisfied after eating (which I think brings on the binges--

either that or the deprivation of so many foods.) When I get up each

day, I just don't want to think about preparing another meal,

another three meals, to be able to get through the day, and can't

imagine doing this for a year.

Kirsten

>

Hi Kirsten...you could streamline it all: a huge roast in the

crock pot, then freeze leftovers individually. Boil a dozen eggs,

easy to pack & go. Tuna (albacore in water) is great, fast, easy.

Mix up 2 cans at a time & put half in the fridge for tomorrow. Stew

20 chicken breasts or thighs at a time & freeze them, individually

wrapped. Same with lemon juice...freeze it in empty ice cube trays.

Start thinking " volume " & prepare many meals at one time. Freeze

whatever you like for another time. I wrapped 12 lamb chops & froze

them yesterday, ready to take out & cook. You can do it ! Susie