OK I am not better yet.
most of the time I am sick and I still have most of my OLD symptoms.

For the last six months I have been on IV first roce--
now doxy 400 four hrs a night
I also take glutathione three times a week 7cc each time

Ok here's my problem

This past month my DR started me on mepron and I have not had the good first TWO to three weeks that most people have had just fevers, headaches, tired more than usual and the worst system is

ANGER--AND DEPRESSION everyday now.

THIS is really hard for me to handle especially with three kids and a husband

I believe the glutathione may help on the first day of in ejection;

I push it through midline picc. Then after middle second day I start to get ,,

ANGER
and dizzy foggy FEELING ect till my next dose OF GLUTITHION..

This is a list of the med I am taking

1 .DOXY IV FOUR HRS A NIGHT

2. MEPRON 3000, MG A DAY--NO NOT MISPRINT HE HAS ME ON TWO TEASPOONS TWICE A DAY

3. PLAQUENIL--TWICE A DAY

4. ZITROMAX--600 ONCE A DAY

5.6.7. THREE DIFFERENT KINDS YEAST Pills

8. ALSO TAKE SUPREMEGREEN FOR ALKLINITY

9. THYRIOD MEDS FOR LOW THIRIOD

AND THAT DOES NOT INCLUDE DIFFERENT METEGENICS
HE HAS ME ON

understand ONE THING I COMPLETELY TRUST EVERYTHIN MY DOC IS DOING.

I am JUST LOOKING FOR ANYONE WHO MAY HAVE HAD SAME DOSE AND OR EXPERENCES AS I AM

I am on zone diet no sugaR
I drink gal water a day.
I also looked on mepron buddies and no one has taken this amount,

also since being on mepron or glutathione my liver enzyme are going up,
MOST LIKELY NOT CAUSED BY GLUTATHION SINCE DETOX MED
i just hope I don't have to stop before I am better.
i Cant work,
i tried school and I had to quit with a-b,S

because of dizziness and I was hoping to return in sept i, already have SCHOOL schedule ,but

its t not looking good. just frusterated never treated co infections first, maybe improvement soon

Im sorry sooooo long debbie

[This message has been edited by DELT/1 (edited 05 June 2004).]
 

Debbie, I had the same experience. I'm on mepron/zith/bicillin, and artemesinin, soon to add plaquenil. I had instant irritability and some of the worst rages I've ever had. There was no grace period for me, either.

I'm into my third month, and things are so very much better. My head is clearer, no rages, depression gone. I think I might be able to go back to work in the next few months, knock on wood. I've had LD forever, and tons of abx, but never treated coinfections before this. The babs tx is making a huge difference.

Because this is so hard on partners and family, I'd encourage you to encourage your husband to visit the LoveyonLymeCaregivers site -- might help him get through this with less trauma.

The rages are not your fault. They come out of the blue, right? And you feel totally justified in your mini explosions, and then you feel like a creep? Stinks, no?

I truly feel for you. It does pass. Hang in there.
 

AND EVERYONE KNOWS BECAUSE I WILL TELL THEM NOT A GOOD TIME,,
AND THEY ARE REALLY UNDERSTANDING OF WHAT IS GOING ON I TRY NOT TO RAGE.

I CAN USUALLY FEEL IT AND THEN I JUST LOCK UP.AND INBETWEEN TIMES WE TALK ABOUT IT SO THE FAIMLY IS AWARE OF THIS.

THEY ALSO HAVE BEEN TREATED FOR SAME

IV BEEN SICK FOR AT LEAST 15 YR PLUS AND ALL THE MENBERS OF FAIMLY HAVE TESTED POSITIVE.

BUT I WAS THE ONLY ONE WITH THIRD STAGE, AND I GAVE IT TO MY THREE CHILDREN, SO IT HAS BEEN MUCH MORE HARDER FOR ME TO GET BETTER.

DOCTOR THOUGHT I WOULD FEEL GREAT AFTER TWO TO THREE WEEKS..

WAS YOU ALSO ON DOUBLE DOSE
SORRY ABOUT CAPS FORGOT TO LOWER..
THANKS FOR REPLY.

DEBBIE
 

I was a full 2 months on the mepron combo before I got any relief. Things got worse before they got better, for me. And my legs really hurt! It's only been a week of better, for me, but it's a big better.

I'm glad your family understand.

[This message has been edited by minoucat (edited 05 June 2004).]
 

You're taking the mepron with at least 10 mg fat, right? To optimize absorption?
 

OH AND I AM ALSO TAKING

ARTEMISIAE THREE TIMES A DAY AND ALSO (NAC )
TWICE A DAY FOR HELP WITH GLUTITHION

SOOO MANY I JUST FORGET THEM ALL.

THANKS FOR REPLY ILL TRY TO HANG IN THERE .
GOING ON THIRD YEAR ON MEDS..

DEBBIE
 

1.5 months after start of mepron I increased the dose to 750 mg 3 times/day and started to see improvement in very long standing babesia symptoms within 2 weeks.

You should double check that the pharmacy did not read the script wrong, 4 times per day of 750 would make more sense since the saturation dose from the aids patients studies is 750 mg.
Anything above that has a significant decreasing effect. Based on this, a dose 4 times per day would maintain a higher concentration than double dose 2 times/day.

On the other hand, your Dr. has the experience so there may be a reason for the double dose...

Also, mepron in very high doses appears to oxidize the Red blood cells, which decreases their oxygen carying capacity, or at least that's what the data on the drug quotes as having happened in over dose cases.

On the artimesinim... I started taking a non standardized dosage when I first started mepron with no obvious effect.
I just started recently and it appears to have resulted in very physical symptoms, something like the original babesia symtoms (I had babesia LONG before Lyme) where you just feel sick, particualarly in the morning (basically feel like throwing up in the moring). I will modulate the dose to see the effect. I am not sure at this time.

Part of this physical babesia syndrome is a very unpleaseant personality that tracks the level of symptoms.

I have also been having some other Lyme like problems come back but those are quite and distinct in character from the babesia stuff.
So I won't detail them here.

For reference, many years ago I missed 1/2 year of university because of the babesia. I was basically in bed for almost 4 months. It took 5 years for it to become minimially noticable but there where still lingering and peridic symptoms, some of which never did go away (constant eye related stuff and period spaced out feeling, involantary tic's and periodic profound fatigue.) Back then there was no treatment for babesia, all you could do was rest and wait for it to go asymptomatic....

When I got lyme, it took 5 years but then things really started to get bad, primarily lyme type symtoms, now after agressive lyme treatment, the very old babesia stuff was re-emerging but after the mepron the eye stuff cleared up and periodic spaced out feeling (may also have been due to lyme) has greatly diminished.

Hope this helps.

 

i have had lyme for at least 13 p+ yrs even longer since my 16 yr old had it, to they all see dr. j
i was alway sick but received no help

they said i had ms, because i couldnt talk,walk, i studdered,, tip over while standing, dizzyness ,and many many more and that was in 2000 after seeing at least 15 dr and spending 1000 of dollars on test.

but that stuff has gone away \

except fo foggyness dizzynesss, and that has been more of a problem since iv,started six months ago.

my faimly has all stopped meds except my 8 yr old..boy he had it as bad as me and he is also the littlest.

i guess the fact that i am taking glutithion..doxy.. and others ,

really dose'nt help to know what is causing problems.

also i have been having.

fevers,

night terrors .which i wasnt having where cant wake up but i am aware of it just scary stuff.

also temp is alway was 96.5 now its about 99.6- 100 this has been going on about a month now.

i also still have headaches, migrains, and muscle twitches.and my face has started to break out again which most of these had also gone away

the more i think about it.

it has to be herx just hope i get through it since the highest percent rate i have ever felt has been 45% in three yrs,

and know i am back down 35%

hard to really plan anything because of symtoms .

bla bla bla ..
i really need to shut up. sorry

dr h said he might take me off med at end of month just so we can clense system.

i just think i should continue treatment for bab's after cleanse.

since others in the faimly were treated. and stopped.

thanks for replys

debbie in warwick..

lyme diease :::
coming to a faimly near you,

staring the infamous spirocite..
and many coinfections.

For me, the moodiness is 100% the result of constant inflammation, which most abx do not address (although doxy is an anti-inflammatory), and the presence of neuro Lyme that the abx don't reach. I've seen my personality change within ten minutes, from Ms. MegaHyde to Dr. Jekyll, by taking a decent anti-inflammatory. I prefer Celebrex and L-theanine, but there are some Lymenet people who have had a negative reaction to Celebrex, so be careful if you try it. Bextra is another good one, and it comes in tablet form, so you can start with a quarter tab and build up.

There's lots of other supplements that can help, although I can't say any one is the key. For energy, I take CoQ10 and cordyceps. Coptis and goldenseal can be good anti-inflammatories--especially coptis, which is a big Dr. Zhang ingredient. There's tons of Chinese herbs out there, but I don't know enough about them to recommend any--although if you Google Chinese herbs and Lyme, you'll get a lot of suggestions.

I've been getting great results over the past month from a supplement called NAC, and other people here swear by alpha-lipoic acid. I also get great benefits from saventaro TOA-free cat's claw, which supposedly has an anti-inflammatory effect, and from probiotics.

Two other helpful supplements are sublingual vitamin B12, which clears up the brain fog, and phosphatidylcholine complex, i.e. high quality lecithin. I find it even more powerful than flaxseed oil for recharging the mind. And the Omega 3-6-9s are important, although again, I don't know much about them. Oh, and magnesium... that's more Marnie's territory, so maybe try a search on her name to learn more.

Because Lyme can temporarily create the symptoms of attention deficit disorder, I found it helpful to do a Google on the dietary recommendations for people with that illness. And once my mood calmed down, I found people (like my LLMD, for example) to be suddenly much more supportive and kind.
 

Debbie, interesting that you should mention night terrors. I have had some of the worst nightmares ever on this protocol. Not night terrors, but very vivid and scary. After one particularly horrid one, it took quite a while for me to wake up enough to realize it really hadn't happened. Usually, sleep is a great relief for me, but I've been a little scared to dream lately. No nightmares for the past 3 nights, thank goodness.

Good point on the anti inflammatories. They help me a lot too. Also, Liz, I've been taking the theanine that you mentioned in another post. I think it does help with anxiety. I'm so up and down (more up this week!) it's hard to say.

[This message has been edited by minoucat (edited 06 June 2004).]
 

im on many other meds that i havent listed because the list is sooo long.

thanks for info

debbie

[This message has been edited by DELT/1 (edited 06 June 2004).]
 

It's so interesting that people are sharing their experiences with "vivid" (understatement) dreams. At least three people have written over the last week about having vivid dreams when they took a glutathione booster. I also had intense dreams when I started taking saventaro. There's not much written about this in past Lymenet posts, so it's difficult to pinpoint whether these dreams are a good sign or not.

It figures Dr. H's name should come up again. Hmm.
 

I also trust our doctor, and am taking his recommendation to visit Dr. D next month. But you should not hesitate to pursue your own research--as you have no doubt witnessed, the doc is very supportive of new ideas.
 

debbie from warwick

------------------
lyme diease coming to a family near you;;

staring the infamous spirochete;;

with special apperances by
coinfections.

education should never stop.

[This message has been edited by DELT/1 (edited 07 June 2004).]

[This message has been edited by DELT/1 (edited 08 June 2004).]
 

Here's a new agey quote from "The Artist's Way": "Anger is fuel... Sloth, apathy, and despair are the enemy. Anger is not. Anger is our friend. Not a nice friend. Not a gentle friend. But a very, very loyal friend... It will always tell us that it is time to act in our own best interests."

The first four months I was on the Lyme/babesia protocol were comparable to chemotherapy. I dropped ten pounds overnight because I couldn't hold food down, and I could barely leave the house because I kept falling asleep in public places, usually with wallet in hand. By the third month, I was pestering Dr. H's assistant about moving to a hospice because I was out of money and a hospice was the only safe place I could stay once I lost my apartment. The pain was constant, and since I couldn't sleep it was on 24 hours a day. So yes, unfortunately, as Minoucat said, this experience is normal for many Lyme/babesia patients.

There's no predicting when you will come through this, but there is one guarantee: you will be one tough cookie afterwards. Nothing will intimidate you again.

I think my protocol at the beginning was rocephin, flagyl, zithromax, doxycyline, malarone, plaquenil, celebrex. Rocephin had completely stopped working, but I clung to it like a life raft because it was so hard to get in the first place. There are many, many other abx that I've never had an opportunity to try that could work for you. There's also another abx called minocyline that worked miracles, but was too strong to take for longer than a month.

It does seem like glutathione and its precursors cause major herxes, just like abx. Check out some of the other posts on the subject.

I find ambien to be a powerful depressant, and EXTREMELY addictive. Instead of taking a whole tablet before bed, I break a tablet into little chunks, and take a chunk every time I wake up during the night. That has helped lower the dose without losing the benefits. There are many Lymenet suggestions for natural alternatives.

You also asked what my current protocol is and whether it's working. I'm on plaquenil, zith, flagyl, omnicef, saventaro, coptis, Zhang's HH capsules, celebrex, and a bunch of vitamins, immune boosters and supplements. If you do a search, you will find tons of suggestions on this topic to sort through. Cave76 also wrote a great post today about drug/herb interactions, and pointed out that herbs are as powerful as abx and must be taken with caution. Thanks again, Cave.

Since everyone responds differently to these cocktails, it's impossible to say what is right for you, or whether some of these combinations would be harmful to you. You're in good hands with your LLMD, and what he says goes. What's written above is just an answer to your question, and is one of many, many ways to go about getting better. Please take it as just one person's limited experience, and also a way to get out of working on my Master's thesis for another hour.

valarian root was another,

but any way

i will stop ambien because maybe that is some of my depressors

thats why i never drink i try to do anything to not have depression.

also my cat loves valarien root even though it smells like stinky feet,

thanks for info i never was told that

i am not quitting .

but it sure does get the best of me sometimes.

exspecially when i had to quit school two test away from finishing term and now I have to take classes over.

and then when i have a day when i can get up and go to gym, but it never last,, kind of sad. i guess,

well i am thankful that the rest of my family are well enough to move on,

but sometime i feel like im this big weight holding the whole faimly back,

ok pitty party over,

thanks for info,,, your great

debbie from warwick

------------------
lyme diease coming to a family near you;;

staring the infamous spirochete;;

with special apperances by
coinfections.

education should never stop.