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Old 03-20-2009, 05:48 PM   #1
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wdiguy HB User
Undiagnosed Lyme & took a 5 day ZPAK

I havent been diagnosed with lyme but have an appt with a LLMD within 2 weeks. Has anyone or does anyone know if taking antibiotics for 5 days cause flare ups or aggrevates lyme symptoms. The reason Im asking is i was able to deal with my symptoms before I took a zpak for a bacterial infection. I took the z pak and after I stopped it has sent me in a whirl symptom wise and its been a month. With that happening I decided to get my igenex results from my doctor just to double check. Sure enough I found that my PCR Serum was positive. I spoke with the doctor at igenex and he clarified that I need to see a LLMD. So here I am with more severe fatigue than before, constant head pressure for about a week, and increased anxiety after I took the z pak. Am I going to be okay? Or am I going to get worse now? Need some help.... Im hoping this doesnt cause and increase of constant symptoms. Im just worried the two weeks to see the LLMD is to long. Should I be okay until my appt? Im still able to go to work etc. but struggle somedays. I know I sound like a worrier but dont know much about lyme and been pushed around saying im healthy. Any help would be greatly appreciated.

Thanks.

 
Old 03-21-2009, 03:21 AM   #2
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marshrose HB User
Re: Undiagnosed Lyme & took a 5 day ZPAK

I was on zithromax 2 pills aday for 6 months for tx for lyme at one point ( turned allergic). I am unsure if the zithromax stirred you up or not truly, as from what I know lyme can only be 'killed' when it splits and reproduces every 3-4 weeks ( thats why drs put you on 6 wks antibiotics to kill off a repro cycle) course the controversy is that killing off ONE repro cycle does not get rid of lyme in all patients (there's more controversy but thats the beginning of it). It could flare you up symptom wise, I don't see why not, whereas being too stressed can too! Two weeks isn't going to make or break you, but I do understand the relapse feeling you're going through.

It is good you have your PCR results now, to bring to the LLMD. If you have other bloodwork from that visit and it's recent, bring that too so maybe you won't haveto have AS much b/w run when you go for your initial visit. Interesting you have a postive PCR yet that dr did not treat you - yet another controversy over test results that the PCR can be easily a false positive due to contamination when they run the test- I've read of that through the years myself. You should read up on Brian Fallon at columbia university, they updated their site since I looked last, and have alot of information that is useful. Its easier if you get yourself upto speed on everything with lyme, makes it better to understand. I know you feel like heck, but maybe when you're not so run down, you can start to educate yourself better if indeed the LLMD starts to treat you. Its easier to go through it and understand at the same time. Then again, the experience alone of what we go through between trying to be tested, treated, and cured is a whole other can of worms!! I will try to give you info as I see that it fits your scenereo the best I can.

They are going to retest you most likely, for other things, so you may (or may not) be having treatment at that 2 week appointment, with that positive PCR you may very well be on antibiotics very soon which would be great for you.

If you're tired, just rest, get some sleep, take a multivitamin if you don't, and keep that diet healthy, juice and protiens to get some extra energy, it will taper off but slowly how you are feeling, it stirred things up and also getting sick is another sign of Lyme in a way, depends- prior to my first diagnosis of lyme when this all started for me, I was getting sick the same WEEK of EVERY month-the 13th or 14th was for me, with severe upper resp infections, double pink eye, bronchitis- but it would become SEVERE ILLNESSES in literally 2-3 days to the extent I'd need breathing treatments. Every month for almost a year I was at the dr on the same dates, or within 2-3 days until they saw the pattern and tested me for Lyme.

My body was going in a wave of no immune help when the lyme would reproduce on it's cycle and if I went to a store I'd be sick as a dog, then by the time I'd be better and through that cold, it'd be that time of the month again to the day almost, and I'd be sick as heck all over again. Thats how they tested me to begin with, cuz of that cycle.

You are going to hold out and last til your appointment, heck you've made it this far, but it probably stirred things up with your immune system and the zpack with the lyme. Its the timing to see if you were dealing with a herxheimer reaction or juts aggervation of symptoms.

A Zpack lasts in your body for 10 days even though you only take it for 5, were you more stirred up within those 10 days? if so you could of experienced a herx as well, it's a possibility. Thats why you take 2 pills the first day, it gets the levels up in your blood to be effective after the first day, then the other 4 of taking one pill per day maintains that dosage, and it will stay in your system for 10 days, the joy of the zpack, its a great med (and expensive).

Hope you start to level out and feel better, and get those results for the LLMD to see.
Can't wait for your appointment to see how you do.

Last edited by marshrose; 03-21-2009 at 03:36 AM.

 
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Old 03-21-2009, 06:39 AM   #3
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wdiguy HB User
Re: Undiagnosed Lyme & took a 5 day ZPAK

Wow thanks for all the info. The reason my doctor didnt treat me with a positive PCR is cause he didnt see it. It was on the last page and I caught it a year later. I called Igenex and they told me if your serum is positive you need to see a LLMD cause that is very significant. I guess that test isnt real sensitive to pick up anything. Its liek a 30% chance of detectiing it I think. It tells you on DR. Barrasuco's site. Here are my results below.......

Test Name: IFA B Burgdorferi G/M/A Result: <1:40 TITER

Ranges:
<1:40 Negative
1:40 Inderterminate
= OR >1:80 Positive

IGM Result NEGATIVE
CDC/NYS Result NEGATIVE

18 kda. -
22 kda. -
**23-25 kda. -
28 kda. -
30 kda. -
**31 kda. IND
**34 kda. -
**39 kda. -
**41 kda. IND
45 kda. -
58 kda. -
66 kda. -
73 kda. -
**83-93 kda. -

Igenex - IGG - Result Negative
CDC/NYS- Result Negative

18 kda -
22 kda -
*23-25 kda -
28 kda -
30 kda -
**31 kda -
**34 kda -
**39 kda -
**41 kda +
45 kda -
58 kda -
66 kda -
73 kda -
**83-93 kda -


Whole Blood
Genomic or Plasmid B burg NEGATIVE
Plasmid - B burgdorferi NEGATIVE

Serum
Genomic or Plasmid B burg NEGATIVE
Plasmid - B burgdorferi POSITIVE -Confirmed by Southern Dot Blot

I will explain how I felt and then taking the ZPAK.

First off my symptoms are fatigue every day from teh moment I wake up. Im so exhausted I usually just fill up the bath tub and lay there untill I get enough energy to start getting ready for work. Brain fog is there and comes and goes. Muscle pains and aches change weeks to months. I just have an overall ill feeling like im sick. Gi symptoms rotate from diarehha to consitpation. I have hasimotos since i was 22.... very weird for a guy. My legs constantly ache. My speech is slurred sometimes. Eye twitches, head pressure like my brain is expanding, hair falls out so easy. It was all suddeen when this happened and hasnt let up. Neck hurts me so bad it aches and I always try to crack it and rub it to feel better but doesnt. Anxiety, feelings of depression im sure. Ive had so many symptoms but they just come and go and change. Ex. rib pain on both side last 2 weeks and is now gone.

Before taking the ZPAK- was going out with my friends, playing flag football. Pretty much no fatigue and was able to go out and have fun.

February 2009 - The day I took the ZPak. Please note that I had no thoughts of Lyme at this time. My doctor said I was fine and test were negative.

Day 1- (2Pills) Went out with a couple of friends to some bars and stuff but didnt drink cause it would make the antibiotics not work. Im at the bar with one of my friends and told him...... Man I really feel good right now, like before all the symptoms and things started happening to me. He replied, great lets have fun. So as the night went on I started getting weak kinda with strong anxiety coming on. I never had anxiety in a long time. So I told him I need to go home lay down, this ZPAK is messing me up. SO on the way home he says...Know what would be crazy... maybe you had a bug the whole time and your knocking it out since you feel good mentally like you were before. I said... no way I had anibiotics before it cant be.

Day 2- (1 Pill) Had flag football practice and didnt think I was gonna go. Well I went out there and had so much energy that I was not getting tired from running full sprints. ( please understand before I was always tired, had to take breathers and just knew i wasnt the same cause of the fatigue. )

Day 3-5 - Constant low grade anxiety, but still able to do what I have been doing , work gym etc.

Days after the Zpak - Symptoms start popping up that I havent had or at least not had in a while. Im so sleepy when I get home from work and was jumping in bed right away. I dont want to go out cause im so fatigued and have anxiety. Days later I am developing this weird kinda head pressure and may constantly press spots above my eyes and temples to try to relieve it. I got hit with slurred speech for a few days. Drunk feeling like im walking around drunk/dizziness. Motion sickness, i was noticing this more in the car...very mild but weird it was there. My body felt the other day like it wouldnt move properly- very hard to explain. Yesterday my balance was not right and i notice myself wobbling. I ve had some of the symptoms, well most of these symptoms in the past and now they just came out after i took the ZPAK. Been 24 days since last ZPAK pill.

After this happened I looked back to late 2007 when i got real sick for no reason and was out for 2 months of work. My doc said I got some sort of bug and gave my Avelox. Same thing happened but was worse and I think I figured out why. He game me steroids right after that. Things got worse again and went to the ER cause I would not eat and pretty much thought i was dying. They gave me another shot in the rear of steroids also. And I was up vomiting water and crying like a lil girl in my bed. Ive read that you dont give steroids to lyme patient which can make matters worse. Well if I do have Lyme it does make sense now.

If you search my name "Wdiguy" on these boards you will see everything going on with me. Looking for answer from.. Adrenal fatigue, thyroid, food intolerances etc. You can see my symptoms changing etc. Started when I was 22 and am now 27. Here i am in May of 2007 on this lyme disease board asking questions....


Do I have Lyme? 4 years no docs can help

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

Here are my symptoms:

-Constant fatigue/ exhaustion
-diarreha and constipation rotates
-slurred speech, can speak good anymore, use wrong words and just cant complete sentences. feels like i cant move my mouth right

-depression that comes and goes throughout the day
-leg aches in the calves
-when i eat something i get a rush to my head like i need energy there. it gives me just a few seconds of relief from the fatigue. then fatigue gets worse.
- obsessive compulsive (not to bad but comes and goes)
- unrefreshed sleep, achey when i get up
- memory is bad
- concentration is bad
- lost all my interest in everything
- nose twitches comes and goes ( used to be my eye lids)
- rapid hair loss/ thinning, falls out really easy (on propecia and wont stop) first sign with fatigue on the onset of problem
- feel like im suffering inside
- heart races after i eat carbs, then fatigue gets worse
- sensitivity to light
- grind teeth alot
- mood changes back and forth throughout the days ( no mania like bipolar )


so far ive been diagnosed with hypothyroidism and being treated and no relief from that. on synthroid t4 and cytomel t3

Going to see a GI doctor next month


Hopefully this LLMD will finally shine some light on whats going on.

Thanks.

 
Old 03-21-2009, 07:27 AM   #4
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marshrose HB User
Re: Undiagnosed Lyme & took a 5 day ZPAK

GEEZE LOUISE!

You are Lyme RIDDEN! I don't say that often at all but you are JUST LIKE ME HOLY COW

I too was treated with steroids ALOT due to allergic reactions to the antibiotics, so thats whats made me so bad and just suppressed my immune system to let the Lyme run amuck, the neck pains, I TOO had hashimotos thyroid-2 nodules- after my IV treatment 2 months later it went back to full normal size and nodules gone- never took a synthroid pill since 2002 when I had treatemtnt.

Wow, you really gotta write all this down in a timeline like you did for the LLMD, just list dates/sicknesses/symptoms/and WHEN you got those doses of steroids.

I fully believe you've been sick with Lyme, I truly do. I am glad you're going to the LLMD.
I bet you herxed each time with those antibiotics too, I had horrendous neck pains when I herxed too, like whiplash was aweful, and the dr just told me as I look back now- ohh it's just part of the bug you have bla bla- it was the roughest time for me, 1999-2002, and I was sick from about 98', if not prior. I had about 15? doses of shots of prednisone, as well as oral weaning packs, and also upto 60mg a day for 10 days then pred weaning pack, it made me so much worse. Wow, you are just like how I was in so many ways it's amazing. I can't wait for you to goto the LLMD for a full workup. You'll get better soon, its just a matter of getting on those antibiotics, and do let the LLMD know which ones you were on that made you worse, those were the ones working for you.

I had horrendous diarrhea and the most sensitive stomach it was aweful and I went to a GI dr, who was getting ready to do an endoscopy and colonoscopy on me then I tested full positive for lyme and cancelled that appt, and the diarrhea started to go away with my lyme treatment. So many things fall hand in hand like a domino effect with this disease. I usedto read Burascannos stuff all the time, I just know how so many drs blow off positive PCRs and thats what they say- easy contamination- (my but).

 
Old 03-21-2009, 10:07 PM   #5
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hanelo4 HB User
Re: Undiagnosed Lyme & took a 5 day ZPAK

Hi Wdiguy,

I actually just read your post to my husband because it sounds like I wrote it myself. I have all of your symptoms but the diarhea. Like you, I have been having this off and on for a few years but I was always able to function. I was never 100%, but pushed myself to do things. I took 1500mg of amoxicillian for a bad bladder infection and bam! All of my symptoms got worse. I had old ones come back and new ones appear. My anxiety levels were through the roof and I also have a tiny bit of OCD. My doctor told me that that's sometimes how people figure out they have Lyme. My test was negative but I had 3 Inds on bands that were Lyme specific. He says he looks at that as being positive. You should definately see an LLMD to see what he/she thinks.

Good luck and let us know how it goes.

 
Old 03-22-2009, 08:58 AM   #6
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wdiguy HB User
Re: Undiagnosed Lyme & took a 5 day ZPAK

Thanks rosepetal and chantel for all your input. I have been tested for EVERYTHING and I actually did the colonoscopy and endoscope 1 1/2 years ago, wish I could have caught mine before that back then. It wasn't so bad but just sucks I have seen every day doctor in my area and no one can find anything. Well I will let everyone know as soon as I see my LLMD. Thanks again I really appreciate the support.

Last edited by wdiguy; 03-22-2009 at 08:58 AM.

 
Old 03-22-2009, 09:22 AM   #7
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marshrose HB User
Re: Undiagnosed Lyme & took a 5 day ZPAK

Inbetween my initial diagnosis with a positive western blot, (that turned negative by cdc standards to the dr), and my spinal tap 3+ years later, I went to 2 universities, and say another 50 doctors in a year in all specialties. You're far from alone when going to the dr and the 'new patient' route to see what they think is wrong with you. BELIEVE ME I know.

I was so happy when I had that positive spinal tap, it took years, and a SPINAL TAP to prove what was wrong with me, but I finally got the treatment I deserved all along, I just had to goto the ends of the earth to get it, and go through new patient appointments from doctors who told me I had everything from brain tumors, to aids, to hepatitis cuz I have a tattoo- you name it, I've been told it, with NO correlating tests to show, just their initial thoughts- until I whipped out my binder FULL of negative test results, from brain MRIs, bone scans, blood cultures and tests, stool tests, parasite tests for other countries- you name it. I am the million dollar workup.

 
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