I am afraid I am relapsing--feel awful, have a UTI-which they only gave me 3 days of cipro for--one of my nagging symptoms before being diagnosed with lyme was reocuring antibiotic resistant UTI's--I am wondering why only 7 days after stopping abx I have an infection already????????????? I did insist they culture my urine due to past history and being on the abx for so long, I am worried that 3 days of cipro isn't going to do the trick!!Wouldn't you think I have built up a resistance??

Joint pain is up, pain in general is up and I am exhausted and not sleeping well. I figure the not sleeping could be because of anxiety of relapsing. Fog is very thick and feel very weak and washed out-pun intended LOL

Anyone else have any input on "wash out" period? They told me at LLD that they keep the picc line in for one month because a lot of times you do not feel better until after a month after abx are stopped? the plan is if I do not relapse to keep me on two antibiotics for 3-4 days a week orally for a while and if I do okay within this month they are planning to pull out picc line.

There are so many here that I have read being on IV much longer than 7 months--I have a good doctor here in Huntersville --he treats many patients I know on the net and I do trust him. I am just scared sometimes that I am never going to get better. My family is finaces are ruined and my disability appeal has not even left the desk in locally and no new records have even been considered--my attorney called today and said it could be another 180 days before they make a decision due to the back log in NC---this sucks and not well!!

I am a wreck about it. Last time I had a abx holiday, within 3 days I felt better--this time as time goes by I am feeling worse every day. The UTI hit like gangbusters on Christmas day-had to wait until today to see the doc. Been running low grade temp--figured that can be from UTI and not necessarily the lyme.

I am scared that the whole nightmare is starting all over again--any input welcome

suggestions for suppliments, immune boost or cleansing????

thanks

It was phychologically VERY difficult for me to deal with setbacks. Lyme is a trial with peaks and valleys.

In 1999, after 8 weeks' IV antibiotics I relapsed BIG TIME when off antibiotics.

Resumed IV antibiotics Sept 1999 throu April 2000, then relapsed in June 2001.

Resumed IV antibiotics July 2001 and kept on them average 4 days a week to Sept 2003. I have progressed sdince then on oral antibiotics but if I go off orals I slump.

I presume you have been tested for co infections.

Once Babs treatment started, I seemed to do better. But my life is still lots of peaks and valleys. Just like Neil said. And it is psychologically difficult to deal with that at times. It is all so unpredictable, but still doing better than I was. Hope to continue in that direction.

Get some AZO Cranberry Pills, up your acidophillus and water intake. Some lemon oil (www.youngliving.com) added to your water will help flush your kidneys.

The lemon oil was recommended to me after my last UTI in July (used to get them like clockwork), and since I started the Lemon Oil (omg, it tastes AWESOME and breaks up the monotony of drinking just water, no more UTI's.

Definitely contact your LLMD about your symptoms and even mention the possibility of yeast.

quote:

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Originally posted by Neil M Martin:
Sounds somewhat familiar, w/o the UTI.

It was phychologically VERY difficult for me to deal with setbacks. Lyme is a trial with peaks and valleys.

In 1999, after 8 weeks' IV antibiotics I relapsed BIG TIME when off antibiotics.

Resumed IV antibiotics Sept 1999 throu April 2000, then relapsed in June 2001.

Resumed IV antibiotics July 2001 and kept on them average 4 days a week to Sept 2003. I have progressed sdince then on oral antibiotics but if I go off orals I slump.

I presume you have been tested for co infections.

Neil

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Yes I have been tested and treated for coinfections erhliciosis (sp?) and babs was positive. I had two rounds with mepron-one in the beginning of my treatment and one a a month ago. was on clinda for ever as my second antibiotic.

I called my LLD and have spoken with the PA and was told that the doc expects me to feel bad. I have an appointment on the 3rd of Jan to discuss my symptoms and to determine if we should start orals or iv again. I got the impression they were going to wait one month before making an IV decision due to this wash out period??!!It is all so confusing especially because my cognative ability at the last appointment was a 0 on a scale of 1-10, luckily my husband went with me and has filled me in on what exactly he said.

As far as anxiety, I do take klonopin and last night I took my trazadone and did sleep like a baby--thank god. I usually take a smaller dose of trazadone than perscribed because the 150mg makes me so groggy in the morning--but I figured I am so foggy anyway what is the difference--LOL

I keep a daily journal of my symptoms and take it to every appointment every two weeks so I can review with them what has been happening.

I am on effexor for depression as well--the psychological aspect of this disease is devestating.

As far as work-I have not been able to work since Feb. Once I started oral abx in Feb I started herxing and seemed to herx continuously. I was on my knees and very ill when I was forced to quit working in Feb. I have been on IV since April 28th. I recall a couple of decent days here and there--but I have been running low grade fevers, headaches, body aches and flu like symptoms on and off all along. There has been no way for me to work at all. There was one period of a week I was off abx due to elevated liver enzymes and I felt much better--but it ended quickly and I was back on abx herxing again.

My lyme is late stage chronic--seems I have had it for at least 15 years as far as we can figure from my history. I am one of those people who was diagnosed with 12 different things from cfs to fibro , possible lupus etc--no one knew waht was wrong with me-they just kept referring me to shrinks-- I have neurological problems and arthritis in just about every joint in my body and my cognative skills are horrible--I am an ultrasound tech by trade and I can hardly remember my anatomy at this point.

Thank you everyone for your input--I welcome more

Are you on your 1`st step of the SSDisability process? No new stuff can be added? NEW stuff can be added....don't let them give you that.

Iowa also has a huge backlog; they brought in 2-3 judges from Calif. & Ariz. to help for 3-6 months. They approved 1 of my friends.

Go also to www.disinissues.com and look at their files/sites shown! Print out the copy of the female drs. that she used as her thorough, detailed SSD app! She shows detailed statements why she can NOT work.

Look at some other sites there so you have a better understanding of going thru the process. Print out the links shown & check them off after you read...time consuming & we forget w/our brain fog.

It sux--we are so broke to the point that my husband and kids are depressed, the phone rings constantly, no money for doctor visits, meds others take in the house etc.

I am in good hands though--my advocate has never lost a case that my therapist has referred to her and most of them in the second step~~ pray for us

Happy New year!

Cathy

quote:

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Originally posted by bettyg:
Cathy, my heart goes out to you.

Are you on your 1`st step of the SSDisability process? No new stuff can be added? NEW stuff can be added....don't let them give you that.

Iowa also has a huge backlog; they brought in 2-3 judges from Calif. & Ariz. to help for 3-6 months. They approved 1 of my friends.

Go also to www.disinissues.com and look at their files/sites shown! Print out the copy of the female drs. that she used as her thorough, detailed SSD app! She shows detailed statements why she can NOT work.

Look at some other sites there so you have a better understanding of going thru the process. Print out the links shown & check them off after you read...time consuming & we forget w/our brain fog.

Best wishes! Betty G., Iowa

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I myself was wondering about yeast. But also magnesium defienecy. Abx can deplete mg levels and so does lyme. What about garlic and a detox diet?

Maybe try the blood type diet, this helped me alot when not on treatment and didn't know I had lyme. Diet, food allergies and stuff like this, can make you feel very bad.

Are you on a good multi vitamin? One easily absorbed?

Behavior therapy for the depression is very effective. What we think affects how we feel bigitme. I was treated with this years ago and it helped me alot, was practically agoraphobic, (lyme and didn't know it) , went from that to going back to school and working for 5 years. If you can't afford it, read about it, it is quite simple really.

I am assuming you are on milk thistle for the liver, but diet can also help with this.

Hope this helps.

I am aware of magnesium with fibro for years--it really helps

usually i take a good multi, b complex, calcium. mag, co q 10, dhea--as directed by clinic levels were extreemly low.

I take jarrodophilis, drink non sweatened kefer,

Unfortunatelty, my appetite is down and my stomach has been upset from cipro, not to mention I have felt so awful I am sleeping through many days--so I have not been good aout suppliments in the last week--tomorrow morning with breakfast I plan to start again--never stopped probiotics though

my visits were over for the year and now that it is a new year I will see my therapist regurally--only allowed 20 visits a year between shrink and therapy--shrink is waste of time-haven't found a lyme literate one--my therapist is awsome--she is a medical psychologist who is very familiar with lyme and although I have only seen her once a month for the past four months--she has given me great tools and a web site of hers to help.

the depression gets bad sometimes--i try my best to work through it--husband suffers from depression also so it is hard--plus he is pushing me all the time about money and when I will return to work etc-been out since feb--SSI is dragging there feet-turned down originally in aappeals process now.
HI,

I myself was wondering about yeast. But also magnesium defienecy. Abx can deplete mg levels and so does lyme. What about garlic and a detox diet?

Maybe try the blood type diet, this helped me alot when not on treatment and didn't know I had lyme. Diet, food allergies and stuff like this, can make you feel very bad.

Are you on a good multi vitamin? One easily absorbed?

Behavior therapy for the depression is very effective. What we think affects how we feel bigitme. I was treated with this years ago and it helped me alot, was practically agoraphobic, (lyme and didn't know it) , went from that to going back to school and working for 5 years. If you can't afford it, read about it, it is quite simple really.

I am assuming you are on milk thistle for the liver, but diet can also help with this.
thank you so much for your input.
Hope this helps.

Take Care
Lymiecanuck[/QUOTE]

Let's not forget......you never mentioned flagyl here. This is vitally important while on IV abx.

Trout

Cathy

quote:

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Originally posted by troutscout:
Babesia and yeast.

Let's not forget......you never mentioned flagyl here. This is vitally important while on IV abx.

Trout

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