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» LymeNet Flash » Questions and Discussion » Medical Questions » Just need some support.........

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Author Topic: Just need some support.........
KYForester
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Member # 24695

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OK. I'll try to make this short as possible. I'm

about ready to make a change that I know I'll

regret later (stopping meds), so I am asking for

some support.

I recently switched LLMD's approximately 3 weeks

ago going from a very passive tx to a much more

aggressive tx.

Old Protocol:

doxy 1x/day
1 mg klonopin

New Protocol:

flagyl - 3X
ceftin - 2x
rifampin - 2x
zith - 1x
1mg klonopin - 1x

I been on the new treatment for 2 weeks. Things

started out slow and I have been continuously

feeling like crap. A week ago today I woke up

with a killer sore throat. As things have

progressed through the week I have been severely

congested, and continue to feel like my head is

in a bubble with my sinuses/ears clogged up. I

have had no fever. However, my wife came down

with the same thing (basically the flu) a day

later than me and continues to have similar

symptoms other than she has had a fever for 5

days. My first question is; These colds have to

be related right? I'm freaking out because I have

no fever and my sinuses are way more impacted.

Also, I have been having constant eye twitching

since beginning my new tx. I had it mildly about

a moth prior but now its ramped up. I am also

experiencing extreme brain fog, and I feel

disconnected when walking around (dizziness, my

brain takes a second to catch up with what I do

physically)

I know this is all part of it, but I just needed

to air it out and vent, because I feel worse now

than when I was on the doxy alone. However, I had

reached a plateau with the doxy and my symptoms

were slowly coming back.

I am beginning to feel like I did before I was

diagnosed and the neuro crap scares me.

I've read many many posts over the past couple

weeks and feel blessed to be able to come here

and vent.

In need of some encouragement [Frown] .

KY

**edited dosages**

[ 03-17-2012, 07:32 PM: Message edited by: Lymetoo ]

Posts: 45 | From AL | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
Carol in PA
Frequent Contributor (5K+ posts)
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The muscle twitching is a symptom of low magnesium.

The Lyme bacteria uses up our magnesium.
But our liver also uses magnesium when it makes glutathione to detoxify poisons.

The increased eye twitching is part of a herx, as the liver is straining to keep up with the increased load of neurotoxins from the dead Lyme bacteria.
Every one of our cells needs magnesium for all of its enzyme functions, so you really need to replace the magnesium.

Posts: 6947 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
glm1111
Frequent Contributor (5K+ posts)
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There is a bad sinus/flu going around. I am just getting over it. I take herbs (antiparasitic) and salt/c and it helped me a lot.

Keeping things moving in the colon can help clear the sinuses and toxins. Drink lots of water and hot liquids/soup/tea.

Hope you feel better soon.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
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Well if you added all those new meds at once I would expect you to feel like crap just from the med changes. It is fine to treat aggressively but personally I get really aggravated at docs who cannot balance aggressive treatment with common sense.

The rule is to add one new med at a time. By stopping everything like you plan to do you have no idea which med is the hardest to tolerate and even if the meds are at the root of the problem.

Maybe you could try just cutting your doses by half or just stopping one or two of the meds.

At this point even stopping meds for a couple of days or even a copuple of weeks won't really harm you treatment wise. You are just taking lyme meds and not meds for coinfections which need more continuous uninterrupted treatment.

Just learn from this mistake and move on. Even if a doc prescribes multiple med changes you can ramp up slowly at your own pace. You can discuss that with the doc when they come up with a new plan or just wait until the next appointment and tell the doc how you ramped up then. If it upsets the doc then I say find another doc.

Just do whatever supportive things you need to do to get thru this flu or herx reaction. Then restart your meds slower and systematically. Increase doses or add a new med every 3 - 5 days or even wait a week between changes. You need to learn to listen to your body and its signals as to what is helping or not.

Good luck and feel better soon.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Sammi
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Having the flu or sinus problems on top of Lyme is terrible! I have had a horrible virus for several weeks now even though it is not as bad as it was. I was deathly ill.

On top of this, you have started a new protocol. No wonder you feel like "ick!"

You may want to call your Lyme doctor to see if you should back off the meds or lower the doses because of the virus.

It will get better. Hang in there okay?

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KYForester
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Thank you everyone for replying. Can anybody recommended a good magnesium supplement?

Sammi: I called my new LLMD last week and she encouraged me to

stay the course and take OTC meds for some relief. However, I

figure my body has enough to deal with, so I am dealing with the

symptoms the best I can and trying not to put anymore toxins

into the mix. I've been loading up on Vitamin C and staying

hydrated. This brain fog, head/sinus pressure, and feeling

mentally disconnected are what has been really bothering me,

amongst other things.

Thanks again.

Posts: 45 | From AL | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
hshmb
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I am dealing with severe brainfog, disconnectedness and dissiness. I am on riphampin, azith and omnicef. My llmd encouraged me to get nutramedix pinella to help with brain detox. I've been using it a couple of weeks. I'd say it's helping but not resolved. You can buy it online. I take ten drops 2xday. Online, the nutramedix dr suggested taking it with their parsley drops (I think...it will tell you online) to enhance further. I am going to ask my llmd. Hope you find some relief.

--------------------
Bit - years ago, Dx 07/10
Igenix/CDC IgM +, Igenix/CDC IgG +, Babesia Ducani +, Bartonella +/-

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Carol in PA
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Source Naturals, Ultra-Mag,
with magnesium citrate, taurinate, malate, glycinate and succinate.
http://www.iherb.com/Source-Naturals-Ultra-Mag-120-Tablets/1415?at=0

From what I understand, forms of magnesium that end in -ate are more easily absorbed than the forms that end in -ide.
Magnesium oxide is cheap and often used in multiple vitamins. But it is not absorbed as well.

And magnesium is bulky, so vitamin makers cannot put 400 mg in a dose unless they want to use two or three huge tablets.


There is a kind of powdered mag supplement that you dissolve in hot water, Mag Calm.
http://www.iherb.com/Search?kw=gillham%27s+natural+calm+


You can eat foods high in magnesium.
Almonds and almond butter,
Dark chocolate,
Beans, kidney beans, baked beans, refried beans, bean soup, bean burritoes.

You can buy a pound of raw almonds at the grocery store, eat a couple ounces per day.
I like beans, and often make bean soup or rice and beans.

Posts: 6947 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
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i use mag tab sr...dr b recommended it and i really like it

it is important to remember that most sinus infections are fungal not bacterial

all docs dont know thes and prescribe abx instead of antifungals

you can google sinus fungal infections and get the info

the way you increased your abx so much it would be normal to increase your yeast and fungal problems...it would make it easier for the fungus to settle into the sinuses

so be sure to take good quality probiotics (i thake theralac but there are others) sbc, and possibly nystatin and diflucan. if you tell your llmd what is happening he might prescribe the nystatin and diflucan.

good luck to you both.

--------------------
Lyme? Its complicated. Educate yourself.

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aperture
LymeNet Contributor
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Like lpkayak, I now use the Mag Tab SR. I had an issue with low magnesium earlier this week and thought I was gonna die.

Some kind of cold went through my family a week ago that affected each person in a diferent way, so it's definitely going around.

--------------------
aperture

Posts: 551 | From Louisville, KY | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
KYForester
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lpkayak & aperture - How much Mag Tab SR is recommended? And what time of day do you take it?

Thanks!!

Posts: 45 | From AL | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
KYForester
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I am on Peter Gillhams Natural Calm for magnesium. My eye twitching issues have subsided a bit, but

still have crushing insomnia.

I feel like I continue to go backwards since beginning my new protocol. I've been on it for almost 3 weeks

and each day seems to be different and worse most of the time. I have sx that I have not had for two year

creeping back in. Is this normal? I am worried.

Thanks.
KY

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searching4truth
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One thing that I don't think has been mentioned is that you do NOT want to stop rifampin, and restart it. I do not really understand what happens with this particular drug, bur I know the body CAN have a major reaction when you do. So please, do not stop taking it without the specific direction of your doctor.
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Ellen101
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My LLMD actually had me stop my rifampin for 3 days as I was having a severe herx. So I'm wondering why searching4truth you are saying it can't be stopped and restarted????
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Lymetoo
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I haven't seen "searching4truth" in quite awhile.

--------------------
--Lymetutu--
Opinions, not medical advice!

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nonna05
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Easy to build resistance for the drug to work if you start /stop/start/ stop etc..

Many doctor's don't know you can order 150mg for Rifampin and spread it out or just start with that for a few then twice a day ..then see how it goes... Ask for Sandoz/ or orange pill.. if sensitive to fillers.

It also changes the effectiveness of many drug's.. So if your Klonopin has been in you a while it's basically working at half usual effect.. This could create some tingles/nerves etc.

you can also ask for mag shot's if you know how to do shot's in the family.

Posts: 2563 | From Denver,CO | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
   

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