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» LymeNet Flash » Questions and Discussion » Medical Questions » help...going to llmd tom. need advice

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Author Topic: help...going to llmd tom. need advice
guiney
LymeNet Contributor
Member # 4550

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hey there everyone.....I haven't posted in a while, just replied to a few people.

I'm going tommorrow for a visit with my Llmd, I have to travel to N.J. from MD.

So, I'd like to ask and get as much info as I can from her til next month!

I'm currently on IV thru PICC.... taking Doxy 200mg. twice a day, for a total of 400.

I've done real good so far... the norm, herxes and stuff like that. Nothing out of the ordinary.

I've had problems with my PICC getting clogged, so I was unable to get any meds. thru for about 2 weeks......

during that 2 wks, I took a turn for the worst and have no idea why? Any thoughts on that would be welcome.

She also has me on a IV mag.,B1,and B6 which I have been unable to start since the PIcc was flushed.

So my questions and concerns are..... should I do the mag bag? It's a 5 hour drip every other day.

When I first started it, it made me twiuce as bad. WHY?

Will I benifit from this? Is this why I feel worse on it?

What does the Mag. mix do for the Lyme criters that the doxy doesn't do?

I've been on the Doxy since August....feel like really no improvement...

Maybe it's just me thinking negatively?

My liver count is slightly high, they say nothing to worry about- supposed to be taking Milk Thistle.

Not very consistant on it.....lazyness I guess.

I also have been sleeping my life away!!!! Can't seem to get enough sleep.

My llmd called and told me that maybe I need a better sleeping pill...one to help me fall asleep at a normal hour, to get a whole night sleep!

I haven't had a full night sleep well...I can't even remember.

I wake up all night, then finally fall asleep early am then cannot get up till 1:00 or 3 o pm.....

Sometimes will sleep till 9:00pm next day...Hands are panfully numb in the middle of the night...

still migrains, major pain(taking 40mg. of oxycotin)

PLEASEEEEEEE help me ask the right questions. Cuz when I get there my mind goes blank.

Major memory problems, night sweats.

Shouln't I be gettin better by now?

Any feed back would be great...sorry so long.

I'd call TinCup but foregot to bring her phone# with me...

Anyway, thank you, Jamie

------------------


Posts: 504 | From US | Registered: Sep 2003  |  IP: Logged | Report this post to a Moderator
Recipegirl05
LymeNet Contributor
Member # 6729

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Hey Jamie,

Good luck tomorrow at your visit. Hope your Doctor will have some good ideas for you that will help you turn the corner.


You've been through so much.


I don't have any good answers since I've never been on IVs, but I'm sure some experts will stop by soon.


Just do like me. Write your questions down & leave them in the car. Works like a charm.
For real, I've done it twice now.


Anyway, I'll be thinking of you & hoping for good news.


Take Care,
Jan


Posts: 222 | From Texas | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
WildCondor
Unregistered


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That IS a long drip. You might want to ask your doc about doing your own injections of mag, and b1, b6 on your own, it only takes a minute, and it works really well. MUCH cheaper and easier than IV. I do all my own shots like that, easy as pie. have a nurse show you how and you can pick up the injectables at the pharmacy.
Have a safe trip!

------------------
Lyme Disease Help
http://www.wildcondor.com


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guiney
LymeNet Contributor
Member # 4550

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Hey ther Janet, you have got to send me your new email.... miss talking via email.

Well I've got tons of questions written down already, I was just hoping someone would give me some more insiteon m y situation...

Maybe help me broaden some of my questions, answer some plus persue others...

thank you Jan.... I'll email you when I get back home.

Just send me your new email....

Take care, Jamie

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Recipegirl05
LymeNet Contributor
Member # 6729

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My new e-mail is on the little icon box next to the time of my post. Just click on that icon & you'll have my profile with e-mail addy.

Best Wishes tomorrow,
Jan


Posts: 222 | From Texas | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338

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guiney,

You said, "I had problems with my PICC getting clogged, so I was unable to get any meds thru for about 2 weeks......during that 2 wks, I took a turn for the worse and have no idea why."

If you are on Doxycycline daily, that would (hopefully) reduce the bacteria load.
If you stopped taking the Doxy for 2 weeks, perhaps the bacteria load in your body increased, making you feel sicker.

You said the magnesium IV made you "feel twice as bad."

Give the doc a better idea of how you felt by describing your symptoms, and comparing that to the earlier level.

Did you do the mag IV more than once?
Did you have the same problems during the second and third infusions?
How long did these symptoms last?

The magnesium IV is to replace the mag in your body that the Lyme bacteria has been using. The bacteria use LOTS AND LOTS of the magnesium in your cells to live and reproduce. Magnesium is vital, and when the level in our cells is low, all kinds of things go wrong.

(I don't know why your symptoms would get worse during the mag IV. I'm interested in knowing what your doc says about that.)

You said, "My liver count is slightly high, supposed to be taking Milk Thistle....Not very consistant on it."

Is there a method you can use to help yourself remember this? Perhaps draw up a chart, with a list of supplements, and mark the day and time you take them.

If you have more bloodwork done, the liver enzymes can be done again to see if they are improving.

Regarding the migraine headaches:
Keep a record of how often you are getting them. Do you have any meds specifically for them, or does the oxycontin help?

I have problems with insomnia also.
Jacob Teitelbaum has a chapter in his book, "From Fatigued to Fantastic," with all kinds of suggestions for this.

Good luck with the appointment.
Carol


Posts: 6947 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396

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G, good luck..I think I have read about others having some almost herx like thing with the Mg..Probably also means you are really deficient..Not sure.

I would ask if you can either speed up the drip time on the Mg or does it come in one of the balls/elipses?..Then you can carry it around in your pocket and at least be mobile. My daughter has had them for Doxy and Rocephin.


Posts: 2360 | From SE PA | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
liz28
Unregistered


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Hi. You might want to ask about abx combinations. I found that doxy on its own quickly turned into a maintenance drug, which kept the Lyme from turning lethal but could not eradicate it.

Also, you don't have to wait to start treating a possible babs case, as you can get artemisinin at vitamin stores or online. It may not cure you by itself, but if you show improvement on it, you will have a strong case for requesting abx like mepron, which work well when paired with it.

There are many different Lymenet camps regarding abx, depending on your perspective on alternative treatments. Make sure you know about everything so you can suggest treatments, rather than waiting for the LLMD to volunteer ideas. As I've unfortunately learned the hard way, even the best LLMDs tend to have pet treatments that they want to work, which may not help you at all. If you go in able to tell them what you want, you'll have a greater chance of using your time there effectively.

Also, if you are looking to get off IV therapy, there are some abx which some--not all--people find to be worthwhile substitutes, in combination. For example, omnicef and ceftin are similar to rocephin, if not quite as strong, and minocycline is miles ahead of doxy.


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guiney
LymeNet Contributor
Member # 4550

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I very much appreciate all the feed back...

WildCondor, I do the drip at home. The company that sends all my meds, sends the mag bag too, the bag goes straight to the frig.

I've read all the feedback.....good stuff!!!thank you.....

Just one problem.....After driving 4 and a half hours to get here my llmd has the stomache flew

NOT HAPPY!!!!!! I feel really bad for her, and for myself and for my family.

My child has to stay with a nieghbor friend (which she's okay with ) But, well, let's just say it's a hard trip to plan.

Especially when I'm so sick AND I get motion sickness like you would not believe!!!!!

oh well, very upset and dicouraged

Guiney

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Posts: 504 | From US | Registered: Sep 2003  |  IP: Logged | Report this post to a Moderator
   

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