LymeNet Flash: lyme relapse

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Posted by jellyfish (Member # 7390) on :

Hi..i was wondering if you could relapse after 3 years. I was dx with lyme, not treated properly at first, then found llmd. Got to where i was 90% better. Off meds..some slight tingles, aches here and there. Then boom, 3 years later felt awful agin, but with different symptoms(some were similar) LLMD said relapse, back on meds, then off after about 6 months..then some symptoms returned, but eventually back to 90%. Now a new symptom, and its really scaring me that maybe this isn't lyme at all. Now i have badder hesitency. i don't know, maybe its just me nerves. Any ideas..thanks, jellyfish

Posted by Lymester (Member # 5848) on :

badder hesitency?, bladder hesitancy? What is this?

Yes, you can relapse. The symptoms for me have never been exactly the same.

I seem to have grown out of vertigo and ringing ears into severe episodes of flu-like nausea, diarrhea and the never ending tingling in one hand and both arms falling asleep at night.

Posted by Lymester (Member # 5848) on :

Hey, just searched for bladder hesitancy. I don't really have enough information about it. One of lymenet's main sources may be able to pull some info out...

Posted by jellyfish (Member # 7390) on :

quote:
Originally posted by Lymester:
Hey, just searched for bladder hesitancy. I don't really have enough information about it. One of lymenet's main sources may be able to pull some info out...

Sorry...i meant to say Urinary hesitency. Its when you go to urinate, and it takes some time to get it going.

Posted by jellyfish (Member # 7390) on :

Thanks for answering so quickly. At first i thought it was a UTI, but the dr. said it was neg. She put me on anitbiotics anyway. this is not my LLMD, by the way. He is up in NY and i moved to FL. so i am going to call him this week. I am not on any lyme meds at this time. Just have a few lingering symptoms which i have gotten used to. Tingling head, bee sting pain on my side. Anyway, i know lyme can mes with your bladder, i just didn't know what specific problems you can have would be. Life has not been the same since my + dx 6 years ago. Wierd little problems that docs can't figure out. I just had my gall bladder out recently, and my symptoms are still here. They cant understand why. I can..LYME, thanks for listening. Its nice to vent to people that understand. jellyfish

Posted by trailsgrl (Member # 7285) on :

Hi Jelly,

I am a relapser:
1991 orignal tick bite multiple EM rashes.
took 2 weeks doxy got worse, then better.

No lyme symptoms for 10 yrs.

2001 maybe re-infection or relapse.
Mostly neuro symptoms.
2 mo's IV ABX and 6 mo's orals.
Slow return to health.

No lyme symptoms, But plenty of other things like endometrioisis, seasonal allergies, etc. that I never experienced before.

Now another relapse right in the middle of feeling my best and training for a triathlon.

I do not live in an endemic area and havent visited one in years, so less chance of reinfection this time.

Currently treating babesia. Have tested posistive for all co-infections. Babesia symptoms are different than lyme now that I have started treatment for it. MAJOR dizziness, almost fainting, and sweats and chills.

Have you been tested or treated for co-infections? Latest research indicates not treating co's can make for relapsing lyme.

Also gallbladder pain can be symptom of lyme even if it was removed, but others without lyme DO experience this pain without their gallbladders.

Confusing I know. I feel very much the same as you. I keep going back to get more tests to keep ruling EVERYTHING else out. That is the only way I feel better about my lyme DX and treatment.

I dont know anything about your urinary thing, sorry cant help there.

Hope you can hang in there and find some answers soon.
Trails

Posted by jellyfish (Member # 7390) on :

Hey Trails..tahnks so much. Yes i have been tested for co infections..all negative. When i first got sick, i got every neuro syptom you could get. actually i had almost every lymne symptom except joint pain. ID specialist and 2GPs said lyme disease. One "lyme expert" said he thought it was MS. No mri or anything. But my LLmd said to get all those ms/lyme symptoms all at once was pretty hard to accept as MS. MY WB was pos. I had a PCR test when i was pregnant with my 2nd child, in 2002, and was still positive.
ABX entire pregnanccy and nursing. Right before this Relapse of symptoms after 4 years, i came down with a virus...or something. The drs. down here thought it was mastitis since i was nursing.(High fever, chills, achy) They treated me 2x with antibiotic, then was well...but then all these whacky symptoms returned..i wonder if i was reinfected. When i contracted my LLMD in NY, he didn't test, he just treated aggresively. I wonder if it wasn't a relapse, but instead a new infection. Pulling tics off us where we used to live was a daily ritual. When i call him i will ask him to test me again for coinfections, and to see if my WBlot shows anything different. But i guess its probably too late since i was treated with abx, that would just screw up the findings. I don't know, just a thought. When i did speak to LLMD last, i asked him about MS. He said if i was worried about it to go to a neurologist and get tested to put my mind at ease, but he knew in his heart its lyme. Of course he said that white spots have been found on the mris of lyme patients as well. But he insists i have lyme, which is better than MS, right? But now with this urinary thing, i am not so sure again. I get so frustrated and scared. I am now officialy a spaz.Thanks for listening..glad i am not the only one who still questions what the problem really is!!! Jellyfish

[This message has been edited by jellyfish (edited 29 May 2005).]

Posted by janet thomas (Member # 7122) on :

Jelly- Wish I could help you more.

My first WB, after 5 days of doxy (response to doxy was helpful in diagnosis), was CDC positive IgM only, bands 23 + 39 , no IgG bands.

After 2 months of treatment I had the same IgM bands but also 4 IgG bands. I believe this indicates the infection was persisting and my immune system was responding.

Haven't had any more for money reasons.

Janet

Posted by jellyfish (Member # 7390) on :

hi Janet. Doxy worked wonders for me when first dx. got very tired on 3rd day of treatement , then up from there. Unfortuantely, only on for 2 wks, then finally (after months and lingering symptoms) found LLMD. I just don't know if its worth it to have tests done like that when i have been on so many abx. Just seems like a wast of time and money. Thanks for th input...jellyfish

Posted by lymeinhell (Member # 4622) on :

On the chance it is a UTI or your kidneys just sludgey from all the abx, what about trying some Cranberry Pills for a few days? 2 pills, 3 times a day. Might just help flush you out.

Do you still stick to a candida diet? Have you taken any yeast treatment lately? Candida does cause UTI problems.

------------------
Julie G.
___________
lymeinhell

Posted by Lymetoo (Member # 743) on :

I have Interstitial Cystitis....was dxd with that before I found out I had Lyme. My LLMD says the spirochetes LOVE the bladder and they just "camp out" there!

Hope you get some relief by being back on abx.....

PS...please keep your paragraphs to about 3-6 lines....very difficult to read otherwise. Thanks!!

------------------
oops!
Lymetutu

Posted by Monica (Member # 224) on :

Just my opinion: you may be relapsing or you may have a new infection. It really doesn't matter. You should be treated with abx.

I am curious, though, if you were totally symptom free when you went off antibiotics or did you and/or your doctor just decide it was time to stop.

I have urinary problems too along with everything else. There is seemingly no end to what these spirochetes can do.

Posted by HEATHERKISS (Member # 6789) on :

Hey Peanutbutter and Jellyfish,

I don't have a problem........ urinary infection wise. I think.

Anyway it does take a while to get started and kinda goes off and on.

This started happening about two years ago.

I've had all types of different problems for 7 years and was finally dx Jan 2005. Happy New Year!

Heather

Posted by glombick (Member # 4140) on :

Go see a urologist.

Posted by ivebeentricked (Member # 6944) on :

I have the sam eproblem, I thought it might be from the meds bc I noticed it when I started taking them, and I have to go at night a lot, but its always just a little and it takes forever to start. This has only been in the past few months since I started the lyme meds. I had a bladder infection test that came back negative, I am pretty sure it has do do with lyme.

Posted by jellyfish (Member # 7390) on :

quote:
Originally posted by Monica:
Just my opinion: you may be relapsing or you may have a new infection. It really doesn't matter. You should be treated with abx.
I am curious, though, if you were totally symptom free when you went off antibiotics or did you and/or your doctor just decide it was time to stop.
I have urinary problems too along with everything else. There is seemingly no end to what these spirochetes can do.

Hello, and thanks. With the relapse last year, i was on abx for about 6 months. I decided to go off because of all the yeast problems, and i was a lot better. (Still had slight syptoms)

LLMD took me off reluctantly and put me on naturals instead, becuase of the yeast.

Then enter gall bladder issues, stomach pains, nausea(have dealt with that for years and checked over by different gastros.)

They never found anything but slight reflux. So when started having stomach problems again, i went off everything for lyme, my stomach couldn't take it. I haven't spoke with LLMD since surgery. Will speak with him in a few weeks.

Its always a new issue with Lyme. Nothing stays the same. thanks, jellyfish

Posted by jellyfish (Member # 7390) on :

quote:
Originally posted by lymeinhell:
On the chance it is a UTI or your kidneys just sludgey from all the abx, what about trying some Cranberry Pills for a few days? 2 pills, 3 times a day. Might just help flush you out.
Do you still stick to a candida diet? Have you taken any yeast treatment lately? Candida does cause UTI problems.

Hello lymeinhill!

i do have yeast problems..constant itch! I just started taking my acidophilis again, and diflucan since i went on the abx for uti, which really was neg.! But i took the meds as prescribed, just in case. I have another refill on my diflucan, so thats a good thing.

Thanks for your message..it is very much appreciated. I will try the cranberry thing...but i will make an appt. with a urologist.

I am sure he will find nothing wrong and tell me to see a neurologist.Then it will be time to face my fear that there may be something else going on besides Lyme.

In the meantime, i am trying to get a phone consult with my LLMD back home, to let him know what is going on with me.

Thanks fo being a sounding board!

[This message has been edited by jellyfish (edited 31 May 2005).]

Posted by jellyfish (Member # 7390) on :

quote:
Originally posted by HEATHERKISS:
Hey Peanutbutter and Jellyfish,
I don't have a problem........ urinary infection wise. I think.
Anyway it does take a while to get started and kinda goes off and on.
This started happening about two years ago.
I've had all types of different problems for 7 years and was finally dx Jan 2005. Happy New Year!
Heather

Hey Heatherkiss...thanks for info. I assume you are on antibiotics..have you noticed any improvement with the hesitency..on and of business? Thanks..jenniferjelly

Posted by jellyfish (Member # 7390) on :

Hi Guys...to all that posted and replied, thank you...just wanted to let you know i was supposed to see the urologist yesterday, but they changed my appt. to next week.It seems to be getting worse, so it can't come soon enough.

I spoke with Dr. H and he said the pee thing could be from the lyme and he is putting me back on abx...ceftin and zithro. I have other sx as well, so here we go again!

thanks to all...jennifer

Posted by trails (Member # 1620) on :

Good luck! which dr. H? in Florida or in CA????

Trails (was trailsgrl until I found my old password...see what happens when you relapse?)

Posted by jellyfish (Member # 7390) on :

Hey Trails....Dr H. in Hyde Park NY. is my Doc. He is awesome. I just called IGNEX for the urine PCR test so we can be sure we are still dealing with lyme. My last PCR was Pos. in 2002. First dx in 99.

With this latest urinary symptom i am starting to wonder if its not something else.

Thank you for the kind words, and best of luck to all us lymies!...jennifer

Posted by StinkBug (Member # 5191) on :

Bladder hesitancy....
it was one of my weird definite Lyme symptoms. Different than a UTI, kinda felt like I had to go and then would wait and hum a little tune. Rather painful, too, actually, sometimes very painful (I wanted to forget about that one since I don't have it now since on treatment).

Again, it was different than a UTI, which burns, at least for me.

Hope you feel better soon.
StinkBug in Oregon

Posted by jellyfish (Member # 7390) on :

Thank you Stinkbug!(love the name!) Are you still on treatment now? Glad that you are feeling better!...........jellyfish

Posted by Lymester (Member # 5848) on :

Jellyfish:

Now I know what you were talking about. I had that once and ohhh was it painful. I thought I had a UTI and the ob/gyn said no. Wow, I remember feeling bloated and cramped, but no pain or burning when urinating.

It was also the same time when tinnitus/ringing ears was peaking along with sinus infections. Very interesting.

How are you feeling now?

Lymester

Posted by jellyfish (Member # 7390) on :

Hey Lymester....thanks fro the response. I am actually feeling worse...i think i am going to call the urologist and tell him i need to see him asap.

Sometimes i "pee" just fine...other times i am straining to get it out. i don't have any pain, so i guess i am going "enough." Just some sharp pains here and there in the bladder and "exit" area. Haha...After giving birth and having lyme, i have no shame!

I was reeading tincups list of symptoms..dear Lord, that poor thing! But anyway, i saw that she had hesitancy and retention listed as some of her MANY problems. So i see that i am not alone, which is reassuring.

My other lyme sx. are not that bad at the moment.

I haven't started my abx yet..havent gotten them from Dr. H. yet. Probably be here tomorrow, and i called IGNEX today for my kit.

Are you currently on meds? Forgive me..i read the posts, but forget whos on what and whos got what symptoms!

Be well!.Jellyfish