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Dear ,

Sounds like a herx. I'd reduce your dose back to 50mg MWF as that is

the dose that Dr. Brown started his patients on. Sometimes only 50mg on

Mon and Fri to start with. Then see if you feel better.

Chris.

On Sunday, December 1, 2002, at 05:23 AM, Nicometo wrote:

> hi everyone. i just wanted to let everyone know how i am doing.

> everyone has been so helpful in my getting started with the AP. i

> started on the 18th of november. i take 100 mg orally mon wed and

> fri. so far i feel awful (haha). must mean its really working. the

> day after my first dose i started to feel it. thought i was getting

> the flu. i have dermatomyositis. mostly weakness and a little

> pain. the pain is worse and i am feeling a little weaker. i am

> very very dizzy and feel very tired. i am also having a lot of

> depression. i am prone to that but it is really intensifying for no

> apparent reason. anyone else have this happen? so i guess i am

> having a bit of a herx. i was going to start lower (at 50 mg) but

> the prescription was for 100 mg. i also want to mention that all i

> can get right now is the generic minocyclin by watson. so...i have

> began the healing journey and thank god for this message board. i

> have very little support around me for using AP. i wanted to ask if

> anyone would like to share with me there beginning experiences of

> starting the AP. a herx? how long it lasted, etc. i read all te

> info on a herx but it is good to hear of others experiences as

> well. thank you all once again!!

>

> hope everyone is doing well

>

> rachael

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

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  • 2 years later...

waxing and waning was path of the course for me too. Maybe these things

are sometimes for the best, a change of abx every now and then always

did me good. Plus a few weeks off abx is always a welcome break.

Hang in there

bleu

On 18 Oct 2005, at 18:57, Kate wrote:

> This is a personal rant/complaint and I feel like sharing my misery.

> Sorry!

>

> I ran out of Ketek and Tini almost 2 weeks ago and now I am feeling

> worse. My LLMD is being reviewed by his board. I have some emergency

> abx coming in the mail (not Ketek and Tini). At least on the

> unmentionable protocol, I felt better whenever I went off the abx.

> This

> is a bit unexpected, although I guess that's stupid, since I have read

> various explanations for it on this list. It definitely feels like

> more

> inflammation.

>

> Okay, I've got that off my chest now. I am still feeling discouraged

> though. This is not a fun way to spend my life.

>

> - Kate

>

>

>

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I sympathize.

Although you may think I have all my Sh*t together on all this

I was still pretty much of a basket case when I would take breaks

from abx, and either get symptoms right back in a few days, or just

not improve. And I went off them becuase they were exacerbating some

other symtpom (usually my eyes). I'd be like 'WHAT is going on..?'

It was like a no win situation.

All I can tell you is that I could never quit abx cold turkey or I

had problems. I weaned off everything.

When you went off abx (The unmentionable protocol)- you were

probably already at what I call 'weaning dose'..

If it's infl;ammation- what are you taking for an anti inflammatory?

What about Benicar- did a normal dose help you? I'd be using whatever

works.

Barb

>

> This is a personal rant/complaint and I feel like sharing my

misery.

> Sorry!

>

> I ran out of Ketek and Tini almost 2 weeks ago and now I am feeling

> worse. My LLMD is being reviewed by his board. I have some

emergency

> abx coming in the mail (not Ketek and Tini). At least on the

> unmentionable protocol, I felt better whenever I went off the abx.

This

> is a bit unexpected, although I guess that's stupid, since I have

read

> various explanations for it on this list. It definitely feels like

more

> inflammation.

>

> Okay, I've got that off my chest now. I am still feeling

discouraged

> though. This is not a fun way to spend my life.

>

> - Kate

>

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  • 3 years later...
Guest guest

For myself (I have PLS), that would be normal. Symptoms wax and

wane, but never go away.

Also, I wouldn't blame LDN for the worsening symptoms.

Jim

From:

low dose naltrexone [mailto:low dose naltrexone ] On

Behalf Of zipims

Sent: Wednesday, July 29, 2009 11:18 AM

low dose naltrexone

Subject: [low dose naltrexone] feeling worse

after 2 weeks on ldn i can say i fell worse. I

sleep well at night, but during the day all my Ms symptoms are not good. do you

know this situation?

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Side Effects Of Low Dose Naltrexone (LDN)

http://www.webspawner.com/users/sideeffectsofldn/index.htm

Why you may get increased symptoms in 1st 3 months on LDN, by Dr.

Lawrence

http://preview.tinyurl.com/ca2flq

Why some May have problems with or fail LDN

http://preview.tinyurl.com/dfv5ou

Dr McCandless, seldom is LDN stand-alone treatment

http://preview.tinyurl.com/oxyshs

Symptoms usually disappear in the reverse order

HERRING'S LAW OF CURE

http://preview.tinyurl.com/cm6np4

Frequently-Asked Questions About

Low Dose Naltrexone (LDN) as a

Therapy for Multiple Sclerosis

http://tinyurl.com/c84jls

From :

Note to MS sufferers using LDN. For MS LDN's main purpose is to halt disease

progression, not improve symptoms. If you get symptom improvement on LDN then

that's an added plus, only approximately 2/3 of those with MS using LDN will see

symptom improvement. LDN will not repair permanent damage already done. LDN can

halt disease progression and this can allow the body to heal itself but healing

is not a guarantee even if LDN halts the progression. Damage from paralysis may

never improve, hearing may never return if you've lost hearing or eyesight if

nerve damage has occurred. If you have candida yeast overgrowth or bacterial

infections you must clean them up for LDN to work properly. You may have to

clean up your diet. As doctor McCandless has said many times, LDN is not a stand

alone treatment. It's not going to perform 100% miracles unless one is very mild

relapsing remitting MS and has little to no damage.

From Dr. McCandless:

As I have said many times before on this board, anytime someone has a negative

reaction to LDN the first question I would ask is, " What is the diet like? " If I

had a disease such as ALS or MS, I would be more than willing to see if my

dietary exogenous opioids could be causing the negative reaction to a drug that

is helping most of these people get off all their other drugs without

progression of their disease. The reason this is a worthwhile trial is that this

intolerance is affecting their general health and immunity in a negative way.

Unfortunately, sometimes it takes up to 6 months to get gluten out of the

system, so it is not so easy to test.

Wonderful info Dr McCandless wrote me/please read

http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=448

Art

My MS/LDN story/1988 - 2009

http://tinyurl.com/mejs2t

---

>

> after 2 weeks on ldn i can say i fell worse. I sleep well at night, but during

the day all my Ms symptoms are not good. do you know this situation?

>

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