I have been on various abx for last 8 weeks - last 3 weeks have been feeling worse rather than better. On Friday I couldn't take it any more and stopped taking them (I had been on amoxicillin 1000mg/twice day last week). Yesterday (Sunday) I was feeling quite a bit better and I thought yes, the abx are what's making me sick, but today I feel ghastly - neckache, fuzzy head, can't think straight, nausea, leg pain - just like I was feeling while taking them.
I am so confused - I feel like I have so many abx in last 4 years (I also had chronic UTI's before I got lyme 2 years ago) that I can't tell if they are making me sick or the lyme. Or how can I tell I don't just have a systemic yeast infection that is making me feel so terrible.
I don't know what to do. I just can't stand living like this. 15 months ago I gave up on abx after about 9 months off and on various types and gradually I was totally fine until early July this year. I am seeing a LLMD that is well-known and I like him. I feel like a baby for not being able to tough it out. I had one positive band on my Labcorp test.
Sorry for the pity party but I can't stand to worry my family any more. Friends mean well but they don't understand. 3 weeks ago I was walking 3 miles every morning with my dogs and now I can barely make it down the block - and that's with being on abx the whole time so I have definitely deteriorated. I don't even feel safe driving now.
Any thoughts - I'd be grateful - thanks - Aileen
Posted by aklnwlf (Member # 5960) on :
Hi Eileen,
I was doing orals and then IV for about 2 years and then finished treatment.
6 months later....bam.....felt like crap, had a rash that looked like ringworm, swollen ankles, head and neck pain.
Bart decided to rear it's ugly head at that time.
Do you have a co-infection?
I'm still trying to figure out what to do with Bart. I'm not seeing an LLMD any longer.
But I'm sure that's what I'm dealing with.
Bart you have to hit pretty hard from what I've read and heard from others.
Also don't forget to detox. I've added pectin (suregel) to yogurt for a cheaper way.
Type detox in search and see what you come up with.
If not on any orals at the moment laying out in the sun will help you to feel better.
It helps me by boosting my immune system and it sure helps me to sleep.
Hang in there!
Posted by sixgoofykids (Member # 11141) on :
So you started on abx again July of this year? You probably have a high bacterial load and the die-off is probably what's making you ill.
When you first stopped your abx last Fri., you weren't having die-off, so temporarily felt better .... then the Lyme started making you feel bad again.
It sounds like you were deteriorating so that's why you got back on meds? If so, it sounds like you need treatment. It will be tough and many won't understand. Hang in there though, it does get better! It is worth it!
Posted by Lymetoo (Member # 743) on :
I echo what sixgoofy said. You need to get back on meds.
Does your LLMD have you covered to prevent yeast? You're taking probiotics and possibly Nystatin??
Does your LLMD allow you to back off the meds when things get too rough?? Stopping meds for one or two days will allow you to continue without completely stopping!
Every time you stop for several weeks at a time, you allow the bugs to get the upperhand again.
Read all you can about Lyme so you know how to handle it. You can do it!!!!
Posted by KS (Member # 12549) on :
Again, please know I am not saying she does not have lyme...my approach is that it is a game of odds. If someone doesn't have classic symptoms of lyme and/or has test results that don't scream lyme, the more the need for a differential diagnosis...meaning, ruling out other conditions that mimic lyme. At this point, I know you're daughter has been thoroughly evaluated...I'm just suggesting you rule out a few other things that most MDs wouldn't even think to test for.
Certainly your daughter has many symptoms that can be associated with lyme AND she has some bands that are suggestive of lyme.
Regarding her specific test results, I do not believe that any of us should make the stretch that 'IND' bands mean anything....sometimes they turn positive and sometimes they don't. The assay has MANY flaws, particularly with regard to reading the IgM blots. I spoke with a non-partial scientist who runs these tests and she said it is very easy to report false positive banding, especially for IgM. Igenex does not report these bands positive because they are not positive. Trust me, I'd like to make this stretch for my own test results!!
Regarding band 31, here is some information from Igenex:
"The Lyme IgG or IgM 30-31kDA confirmation test is a qualitative immunoblot assay that determines whether 30 and/or 31kDA bands present on a Lyme IgG or IgM western blot are due to B. burgdorferi specific antibodies or not. When we tested Lyme Western blots against a panel of 94 sera from patients with viral infections (confirmed by presence of antibodies to viruses), the assay specificity for Lyme Western blot IgG dropped to 90% and IgM to 81%. The Lyme IgG Western blot bands 30-31kDa confirmation test improved the specificity for IgG to >97% and for IgM >98% (See table below). In addition when a panel of very well characterized 30 sera from patients with neuroborreliosis, that were part of an NIH study, (provided by Dr. Fallon, Columbia University) were tested, the assay sensitivity was >97% (29/30 were positive). Based on this data, we recommend that further testing is not necessary if in addition to 30 and/or 31kDa bands, two of the following bands (23-25, 34, 39,41 and 83-93 kDa), are present on the Western blot. Otherwise, the 30-31kDA confirmation test should be used to confirm whether 30-31kDa bands present on the Lyme Western blots are due to B. burgdorferi specific antibodies or not. If the 30-31kDa confirmation test is negative, we recommend that patient's sera be tested for viral antibodies."
So, it is good that band 41 is positive, however, band 41 is also known to cross-react with a lot of other things (i.e. infectious agents such as syphilis, viruses and non-infectious agents)...unlike band 23, 39, etc.
You absolutely are doing the right thing pursuing lyme and treating it but if it were my daughter, I'd want to be sure she were tested for every other infection (e.g. brucella, Q-fever, mycoplasam, EBV, C.pneumoniae, etc). I'd probably have her re-tested for lyme too...just to see what turns up. If she isn't on antibiotics now, maybe even have them try to do a serum PCR...negative doesn't mean negative but if it did come up positive, nobody would ever question it!!
Just some 'food for thought'....as if you don't have enough to worry about, right? That is one of the frustrating things about this disease...is constantly having to sift through all of the horrible data that is available, deal with the controversy while hoping we aren't missing the boat and the answer is somewhere else.
Your daugther hasn't been treating long and hasn't tried many antibiotics. The stats are in her favor. She will kick this and will look back on this time as a horrible little blip in her life.
Kristin
Posted by treepatrol (Member # 4117) on :
Herxing and then when stopping abx's then lyme taking off.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by KS: [QB] Again, please know I am not saying she does not have lyme...my approach is that it is a game of odds. If someone doesn't have classic symptoms of lyme and/or has test results that don't scream lyme, the more the need for a differential diagnosis...meaning, ruling out other conditions that mimic lyme. At this point, I know you're daughter has been thoroughly evaluated..............
Your daugther hasn't been treating long and hasn't tried many antibiotics. The stats are in her favor. She will kick this and will look back on this time as a horrible little blip in her life.
KS... I think this post was supposed to be on another thread?? not for aileen???
Posted by TerryK (Member # 8552) on :
aileen, As others have said, increasing die off causes more toxins and more symptoms.
I've been told that when you have a quick relapse, it is not lyme but a co-infection. Have you been evaluated for co-infections or treated for them? I've read that you will not be able to get rid of lyme until you get rid of co-infections.
I treat yeast and detox anytime I'm on abx and for a time afterwards.
You could have a yeast infection that is making you feel bad. It could also be a co-infection flare so shortly after going off abx. Underlying all of that, you could have lyme too. Unfortunately, it could be all of the above.
What does your LLMD say about all this?
Terry I'm not a doctor
Posted by 0624sm (Member # 15591) on :
There are plenty of things you can use to mop up endotoxins: extra vitamin C (Emergen-C is great); activated charcoal capsules (12 to 14) taken at least 2 hours away from abx, food, supplements; sublingual B-12. Benadryl helps with the heat shock proteins.
If you also are infected with Chlamydia pneumoniae, you may be experiencing secondary porphyria. The abx can exacerbate this and make you really sick. Cholestyramine or Welchol are very good for this. Glucose tablets, especially before eating, are also good for shutting down the porphyric process, but yeast has to be very well under control if you use glucose. You are experienced at taking abx, so you are probably experienced with measures to ease the die-off symptoms. If you are already using effective counter-measures for those die-off symptoms, I would take a serious look at possible Chlamydia pneumoniae infection and secondary porphyria.
Posted by TheCrimeOfLyme (Member # 4019) on :
Aileen:
Ive been going through the same thing and Ive been in treatment since 2003. I would get so far ahead, be darn near in remission, then it would all come back. It wasn't until the very beginning of this year that I FINALLY tested positive for erlichia.
That was ONE coinfections NONE of my LLMD's really thought I had. One LLMD did think I had it, but ruled it out in his own way. Welp, lo and behold- I did have it. Now, looking back, it makes sense why my FIRST remission was on doxy and rifampin- I was treating erlichia and didn't "know it".
Do you by chance have a coinfection? I learned the hard way- treat them all, regardless of what your LLMD thinks.
I was just completely SHOCKED that all THREE tests for erlichia came back positive, but that my lyme tests for ONCE finally came back with NO bands at all. Uh, I was also confused LOL.
To be quite honest though, I no longer herx on antibiotics that do not treat erlichia. I can take augmentin/amoxy/ and all that stuff forever and never herx. It does help me just feel better though which is odd.
But now, when I take doxy? watch out. I herx. BAD.
Just throwing that out there- I am kinda in the same boat as you and SOOO sick of this. I was at my girlfriends house yesterday and felt like I had just gotten sick and was clear back in 2002.
Good thing we have each other- cuz no one else understands this disease. I have learned this much....
it IS a guessing game sometimes. Posted by Lymetoo (Member # 743) on :
What happened to aileen??
Posted by aileenhome (Member # 3960) on :
Sorry - reading posts does me in and i haven't been able to reply. Also helping my son with college apps right now and i am finding 5 mins on computer is enough and i have to stop for a while.
I went back on the amoxicillin and felt a little beter right away. Doc wants me to stay on 500mg/3 times day till i see him 10 days from now. Yes I was tested for all the coinfections - all negative - but i will ask him to test again. He is an excellent LLMD and I have confidence in him.
My worst symptoms are neckache where i find myself holding my neck a lot and constant brain fog where i don't really feel safe driving. My head has not been clear for 6 weeks. If I could get rid of this I feel like I could deal with everything else.
I do go to a physical therapist weekly who works on lymphatic drainage and that seems to help. I am also trying to bounce on my rebounder trampoline for at least a few minutes a day to help lymphatic drainage. Right now my legs are hurting but i amy have overdone the bouncing! Also doing yoga detox exercises when i can. I take lots of probiotics and have cut sugar almost out of my diet.
But I just want my life back like everybody else on here! Thanks for all your kind words and info. It really does help.
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