Anyways, I'm Lishka, I'm with the Oregon Lyme Disease Network, Im 18 and I got diagnosed when I was 14....I've had lyme at least since I was 6....(with co-infections) and I see Dr. Jones. I'm doing way better now than when I was 14...but just recently I seem to have relapsed after getting off of my IV rocephin and getting onto a different antibiotic so were trying some new combos again.

I've been through a lot since I was little...so I understand what it's like. If anyone has any questions or anything let me know....and PLEASE see my other post about parents/kids with lyme!!

I remember you! You helped to answer some of my port questions. (I have a port now, by the way, and I LOVE it!) Sorry to hear you're not feeling very well lately. I'll be thinking of you!

--Annie

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``The best way out is always through.'' -Robert Frost

Click here to join Lyme Pals.

Click here to see my Lyme journal.

Your Mom helped me out soo much when I first came on Lyme net. I would probly be dead if it wasnt for her pointing me in the right direction!!!!NO LYE!!!!

I have just finished my last dose of I.V. Rochephen at 1 o today!!!!! YAAAAA!!!!! The Doctors are going to keep in my line"Just in Case" I relaps.

I did only 5 weeks of Rochephan last october and never got better. I took your Moms advice(alang with every one here on lyme net!!Thank you all!!)And found a lyme literate Doctor and I did 18 weeks of Rochephan.

I have had no more Die off(herx) and am starting mepron and Zith on monday for the Bab's. I am so hoping I dont have to go back on the I.V.!!

I know I am in for a ride with the Mepron and Zith.and will probly be yelling for help next week!!!

How long were you on the Rochephan?? And when did you stop the I.V.?? Did they pull the line?? I sure hope they get rid of the buggs for you real soon!! I have always remembered you in my prayers along with every one here!!

I hope for the best for you and hope you feel better soon.I know how sick you were!! in and out of the hospital !! You have been through way too much for your age!!! Stay strong and fight back . We can win over this desease!! Brenda

Since Tinny doesn't show up often, I thought I'd give you a hard time, just for her!

Sorry to hear that you've relapsed. Have you done orals at all? Did they help you any? Have you been treated for babs?

Hope you can find some answers here from someone more intelligent than me! [shouldn't be too hard to find someone to fit that bill! ]

quote:

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Originally posted by BRENDA2003:
Hi Lishka,I am soo sorry to hear you have relapsed. I have been following your progress for two years now.

Your Mom helped me out soo much when I first came on Lyme net. I would probly be dead if it wasnt for her pointing me in the right direction!!!!NO LYE!!!!

I have just finished my last dose of I.V. Rochephen at 1 o today!!!!! YAAAAA!!!!! The Doctors are going to keep in my line"Just in Case" I relaps.

I did only 5 weeks of Rochephan last october and never got better. I took your Moms advice(alang with every one here on lyme net!!Thank you all!!)And found a lyme literate Doctor and I did 18 weeks of Rochephan.

I have had no more Die off(herx) and am starting mepron and Zith on monday for the Bab's. I am so hoping I dont have to go back on the I.V.!!

I know I am in for a ride with the Mepron and Zith.and will probly be yelling for help next week!!!

How long were you on the Rochephan?? And when did you stop the I.V.?? Did they pull the line?? I sure hope they get rid of the buggs for you real soon!! I have always remembered you in my prayers along with every one here!!

I hope for the best for you and hope you feel better soon.I know how sick you were!! in and out of the hospital !! You have been through way too much for your age!!! Stay strong and fight back . We can win over this desease!! Brenda

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Hi Brenda,
I'm not to far from you, nearer the Wausau area. My son is infected and currently being treated by an LLMD.

I totally agree with you on the CDC!!! But not the post to start that in!!! I have had a hard time typing the last 2 years and post very few times. But I read every one every day!!! I am sooo thankfull for this site for sure and the people here too!!!

It's lisa, Kady's mom from RI...I'm sorry to hear you're not feeling well...il'll have to let kady know you're online so she can check it out and write toyou..she's away at college now and doing well..thank goodness. Dr. jones took her off all abx this past summer and she's been doing fine...

she's playing lacrosse at college and having a ball..so hopefully this will be you next year!! HOpe you feel better soon kiddo..tell your mom Hi from me..ok?

quote:

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Originally posted by BRENDA2003:
Hi NP40!!!
I saw your posts a few weeks ago. Been wanting to e-mail you to see how your son is doing. I hope he is feeling better!!Do you go to Dr. H by any chance?? He's the only one I could find within 3 hours from me.

He has been a life saver for me!! A doctor that actually KNOWS what Lyme patients are going through!! I am taking 3 people up to see him on Friday. My friend just lost her husband to Lyme disease 2 days after christmas.The whole family is sick from Lyme and the Doctors here just lable it every thing but lyme!!!

I totally agree with you on the CDC!!! But not the post to start that in!!! I have had a hard time typing the last 2 years and post very few times. But I read every one every day!!! I am sooo thankfull for this site for sure and the people here too!!!

I will write you a note tomorrow.My hands dont want to work so good tonight!! I hope your son is having a good night and sleeps well!! take care, Brenda

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Hi Brenda,
Doc H. is the guy ! I e-mailed you as well, so reply when you feel up to it. We can compare notes on our LLMD ! I've referred a number of folks to him as well.

Lishka, regarding IV Rocephin, my son is on his 6th week of a scheduled 8 weeks, but he may be extended as well. He herxed like crazy, then we upped the pain meds to make it tolerable. He still feels like garbage most of the time, haven't noticed any real improvement. It seems like he's a long ways away, so I can relate to your plight.

Sorry to hear that you are feeling unwell again.Hope it is only brief and it gets sorted out.

I am unfortunately still here and with 'not getting better lyme'.Great fun!!!

I am so sorry you aren't feeling well. It must be the time to relaps. My son Dominic seems to be relapsing too.

Your mom helped us so much when we first started posting. We could never forget you or your mom.

I have admired you for a long time, for someone so young, you have done so much for Lyme Disease.

Keep on fighting. Can't keep a strong spirt like you down.

I certainly remember you. Both you and your mom speak "horse" and that's always been something I look for in a person.

Let's see, you live where the "Juniper" grows, so to speak and, uh, there's Meadows there too. In fact, there may be meadows full of junipers... if ya catch my drift

I believe, Amareo is your mare, right? And, if I'm not mistaken, she had a foal about a year or two ago. I remember pulling up the pictures a long time ago. Tennessee Walkers, right? Very sweet horses. My mare that I had growing up was a Walker/Arabian cross. Very sweet and a wonderful friend. I think it's been about 17 years since she passed away but I still dream about her. Now, that's love.

I'm sorry to hear that you have seemed to have had a relapse after coming off the IV. I understand the frustrations. I did oral then IV for a long time, switched back to orals and then took a break of over a year now. One of my initial EMs that was from 2.5 years ago reappeared within a month. I've been really stuborn and have not wanted to go back on any meds. So, while I've been balking I've had THREE other EMs come up. One of them is in one of the original sites as well but it took almost a year for it to start showing up. However, despite the blossoming of these EMs I feel about the same, no better, no worse but it would be nice to have these red patches go away, which happens immediately when I take antibiotics...but I just don't want to take anymore of those...yet.

Ok, well, that was long and went no where. Sorry, just wanted to let you know I understood the frustrations of this stuff refusing to let go and die like any self respecting infection would after so much treatment!

Anyway, I hope your new med combos kick in and you feel better. 12 years is a long time to deal with this illness and I feel for you. Tell your mom I said "hi"

Well, I guess I wasn't super specific. I don't remember who asked these questions, but I noticed reading all these postings there were some questions about my antibiotics/lines/coinfections/etc.

I haven't been off abx at all...I was treated with IV Roceph/zith from February 2003 to August 2004 and added Mepron/Flagyl to that in sept. 2003 until aug. 2004. Sooo...It was a pretty intense combo. Anyways, in August I stopped the Rocephin but stayed on everything else...and then in august/sept switched to only Ketek. I pretty much started a gradual decline within a couple weeks and just kept going downhill....it wasn't sudden, like when you herx....it was just little things here and there and gradually I was doing worse and worse. So About a month ago we added Tinidazole to the mix....thinking the Ketek alone just isn't doing it. I'm also taking Topamax for nerve pain, celebrex, percocet as needed....which I've cut way down on in the last three weeks just to give my body a detoxing break.... and I take lexapro and vitamin B.

Right now as far as symptoms go I have a huge amount of pain, I'm very cold and sleepy all the time, I get nauseas a lot, the last week and a half or two weeks I've lost my appetite....so, losing some weight (maybe thats why Im sleepy and cold but Im not sure) really fatigued both mentally and physically with little exersion, almost obsessive compulsive behavior, like repeating myself all the time in things I do and stuff, but not having the violent thoughts like OCD, so almost like taurettes or something in my actions cuz I have this obsessive way of repeating things I say/do, anxiety...the OCD/anxiety stuff has been happening for about a year though despite even when I was on rocephin, I think thats partly why I wanted to get off of it, I didn't feel like it was helping that. And I have processing disorders now, for about a year also, and they seem to be worsening too. So...Im not sure whats up...I just don't feel too hot! lol. Anyways. So yeah. thats whats happening.

I still have a port a cath....its just been deaccessed since august and I go in once a month and get it flushed and refilled with heparin. So its still accessible if I need to go back on Rocephin...which is what I did best on, I just dont wanna go back on it...inconvient....insurance doesn't pay, etc. lol....you know what its like

Yes, Amareo was my horse. She was actually my first quarter horse. She died when I was 13 ....and Hallie was just a baby then. Hallie is my horsey now, TWH, and did have a baby last year (we had 3 born) and Hallie is actually due to have a baby in about 3 weeks now. She's appearing like she's gonna have it any day though. I hope she has a filly

Anyways, that's about it for now...thank you all for responding. It's nice to know I'm remembered!

*hugs* to everyone

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Lishka

[This message has been edited by Amareo (edited 17 February 2005).]

She is somewhat better but still has some bad issues..It is a very rough disease, not for the weak.

Also Tincup is still around..Mostly having some bad computer issues,etc..I am sure she will be sad that you are having some problems..She has passed along some of your mom's posts to me..Some of the stories are similiar..I am sure she will post when possible.

HA!

Now I see why you suddenly appeared! I was HOPING this wasn't the reason...

Darn it all. It just ain't fair.

Tis late.. HERE.. so I'll make this quick.

HA! Nobody believes THAT.. do they?

Anyhow..

Lyme tutu said..

"Since Tinny doesn't show up often, I thought I'd give you a hard time, just for her!"

HA! Spit my tea out reading that one!

Thanks tutu! We wouldn't want Lishka to feel left out! Glad you can make her feel at home!

You make me laugh! HA!

Anyhow.. Lishka...

(She's nuts! Ya think?)

Reading through your stuff...

I think I feel Babesiosis coming on?

Might that be possible? My crystal ball seems to think so??

OH NO.. not MEPRON again! YIKES!

Or as I was "caught" saying not too long ago.. when talking about Babesiosis...

"I don't want THAT one!"

NOT like I get to pick the TBD I am stuck with at the moment... but it WOULD be nice!

But your symptoms kinda lean that way from what I am seeing.. and I note you've been off Mepron now for several months if I read this right?

I also wonder.. might a pennicillin type antibiotic help? And I don't mean one of them fancy pants ones. Maybe, what I call the rock gut, plain old pennicillin tablets? Or maybe even the K-flex capsules?

I don't see where this avenue has been pursued much in the past.. so maybe consider it at some point? There are some nasty staff things ticks could carry cause they DO live in the dirt.. and this might be something to consider?

But my best guess.. JUST seeing what is here.. in my "tired mode"...

Me tinks it could be the Babesiosis???

Sorry little darling. I wish I had better answers for you.

And an all fired sure cure.

But for now.. the best I can do is toss out some ideas for you guys to play with.

Now..

How many more days till the baby arrives? I AM looking forward to it!

OK.. here is the deal.

You can name the little horses head after me.. but NOT the rest of the horse.

OK?

If you do that.. then MAYBE I won't be considered the horses rear end anymore?

Love you!

love you too!

Lishka

BTW -- I'm allergic to pennicillin but I'm thinking about that avenue ...of maybe getting de-sensitized to it so I can take it...having heard such great things about it. I also did my absolute best on Rocephin....but I'm just plain stubborn and don't want the inconvenience again...plus our insurance won't pay and I hate that for my parents.

[This message has been edited by Amareo (edited 18 February 2005).]

NO GO... eh?

Oh well...

But I like Astro too... so I guess that leaves me as the horses rear end till the NEXT baby you all have...

And then I can try once again to come UP in the world with a name change.

As for the Rocephin... yes.. it has always been the one that does best for you... from what I have seen.

Don't forget the Babesiosis though.. ok?

Ok.. had you thought about pulsing the Rocephin? It would be less expensive that way... and maybe would do the same job it had been doing. Pulsing works well for some folks.

Plus it would be less difficult for your body.

Just a thought.

Night night... gotta get my beauty sleep.

And NO wise cracks little darling.. or off to bed YOU go!

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If you get the choice to sit it out or dance...

We remember you

I posted on your other thread. Derek still sleeps with the puppy you sent him..

Please e mail me..you appear to be going thru exactly what my daughter is experiencing. It's drug induced toxicity from a drug interaction between the Ketec, (any Macrolide metabolized by the P450 Chytochrome System) and the Lexapro!!!!!!!!!!

Macrolide antibiotics cannot be taken with the SSRI"S due to the P450 Cytochrome pathway where the Lexapro and the macrolide is metabolized.

I have spent hundreds of hours of research and have spoken to head doctors at the world's leading hospitals regarding this.

What dosgae of Lexapro are you on?? How long have you been taking it with either Zithromax, Biaxin, or the Ketec??

Pfizer did their own study where Zithromax was combined with Zoloft and the interaction by poor metabolism using the same P450 pathways caused the Zoloft levels to increase by 100%.

The side effects of Lexapro Drug induced Toxicity are severe fatigue, night sweats, chills, mood liability, naseau, dizziness, anxiety, nightmares, anger rages, crying, loss of appetite.

Lexapro also causes the immune system not to function and can also cause diabetes by causing the pancreas to work overtime. I have so many articles that I can copy when I get a chance, right now still not out of woods with my daughter.

I have been/spoken to so many doctors and I am weaning my daughter off the Lexapro but all SSRI"s have serious withdrwal symptoms. I have weaned her from 20 Mg to 17 the past two months.The withdrawal has been lasting about 18 days with each taper with Flu like symptoms, vomiting, severe night sweats, chills, vertigo etc.

When and if you stop the Ketec................ you will automatically be lowering the dose of the lexapro just by the interaction of "raised lexapro levels" no longer being a factor. You will get flu like symptoms, naseau, dizziness, and anger and mood swings.

SSRI's I am finding out are NOT good for anyone taking antibiotics especially contraindicated in macrolide antibiotics, but this is not a published fact as I was never notified by anyone including pharmacist.

Lexapro is also contra indicated in the use of prevacaid, bextra, celebrax, xanax and motrin because they all use the same pathway thru the P450 system. I can go into more detail if you e mail me.So not only are you geting a drug interaction between the Ketec and lexapro but also from the celebrex.
Go on Google and www.drug-interactions.com

You can also look up the serotonin syndrome on a Google search engine. This happens when a SSRI such as Lexapro has a drug interaction with another drug such as Ketec.................causing the serotonin levels to rise. Even over the counter cough medicines and Motrin or Naprosyn can also cause this to happen.

Have you also noticed any muscle twitching, chills, then you are hot a few hours later, jaw clenching, headaches or confusion or hypomania?? These are just a few of the symptoms.

I called the manufactuere of Ketec, in hoping that my daughter could take this medication in place of the Biaxin or Zithromax.............. but was told that 50% of it (the Ketec) is metobolized thru the P450 Cytochrome system.

Biaxin is also a BIG NO with SSRI's and Zithromax has not been extensively studied but is metobalized thru the P450 but the makers Pfizer do not even know what pathways it uses (?)

The Mayo clinic has a special blood test to see if you may have a missing enzyme in the liver which causes you to not be able to metabolize the Lexapro causing it build up in the bloodstream. I have all this information if you are interested.Even if you are a good metabolizer, by using two commitant drugs at the same time that utilize the same pathways in the liver will cause you to be a POOR metabolizer. This happened in my daughter's case and may a also be the reason for your "relapse".

Your post sounds like a exact repeat of my daughters health problems and we also that that she had a lyme relapse until I have spent hundreds of hours and numerous of doctors to find out that it was the Lexapro interaction. Lexapro manufactors do not inform the public of the addiction issue with this drug or the many side effects or drug interactions. The Forrest company does not even inform the public of the P450 enzyme issue causing their drug Lexapro to build up in the bloodstream.

I can give you a link to see of all the drugs that interact with Lexapro in the P-450 sytem that are metabolized thru CYP2C19,
Cy3A4 and CyP6................these drugs can either raise the levels of the Lexapro as the macrolides do or decrease the levels of the commitant drug.

This is very confusing and MANY doctors have no clue as I have found out. DO NOT JUST STOP the Lexapro as a withdrawal symptoms can be severe as they have been with my daughter.

Please e mail me and if you like I can talk to you over the phone. I have spoken to numerous doctors across the United States in an attempt to help my daughter. I will be more then happy to share what I have learned.

Please look into this possibility of a drug induced interaction with the lexapro, Ketec and celebrax. DO NOT DISMISS IT AS A RELAPSE IN LYME!!!!!!!!!!

aunty

[This message has been edited by auntybiotic1499 (edited 06 March 2005).]

If you also push the Lexapro Stories at the bottom left corner you will be able to read about the side effects of Lexapro that I believe you as well as my daughter are experiencing due to elevated LEXAPRO levels due to drug interactions causing drug induced toxicity.

PLEASE CHECK your interactions.
http://flash.lymenet.org/ubb/Forum1/HTML/027022.html
http://flash.lymenet.org/ubb/Forum1/HTML/027420.html
http://flash.lymenet.org/ubb/Forum1/HTML/029502.html

quote:

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Originally posted by auntybiotic1499:
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