Clinically positive, IGeneX negative for Lyme (band 18+, 31/41 IND, 66++) - treated Lyme for the last 6 month with orals, 5 months Doxy, 1 month Amoxicillin. Felt good lately, very minor glitches as I call them. Got off Zoloft about a month ago. Thought I was on the mend.
I wanted to see where I was at if I went off abx - awful to think I can't go a day without popping pills.
Been off abx about 10 days. Not good.
All my things come and go, but I'm getting numbness, my knees & legs hurt (bone on bone feeling), eye twitch, some vibrations.
Everything I eat goes through me -- this used to happen last summer before I figured out the Lyme thing.
All these symptoms I kinda forgot about are making an appearance again. Psychosomatic? I don't know. I know I'm petrified I'm not cured. Am I making myself sick?
My doc wants me to get an MRI and see a neurologist. Seems like a lot of tests to go through for what? A couple weeks ago I was feeling good but taking abx. 10 days off and I'm sick again. Do I need an MRI to tell me that? And I hear neurologists are not Lyme friendly.
Do I have to wait a full 2 weeks to get retested for LYme. Should I bother?
I can't pay out of pocket for IGeneX again but I thought I would maybe do a Quest test which will be covered by insurance? Maybe I'll luck out with a positive? Is it too soon?
Does Quest do PCR tests? Any good?
Maybe I really do I have to IV - my doc mentioned it once. I don't want to for many reasons - I'm just the type of person that if a complication can happen, it happens to me. I have stories.
Not sure what to do next...retest, go back on orals, get an MRI, ???????
~ a very down webmeg
Posted by hatpianka (Member # 12244) on :
Hi webmeg,
I'm in a very similar boat. I was on abx for 8+ months, just finished 12 days ago.
My symptoms started rearing their ugly head about a week ago. I called my LLMD (Dr. K in Madison) but she said to wait a few days and call her back. I called her today and am waiting to hear back from her about what we should do next...
PM me if you want to chat off line.
Posted by feelfit (Member # 12770) on :
Hi Webmeg,
Sorry to hear of your situation. If it was me, I would go back on the orals if they had you feeling better. What does your Doc say?
If it was me, I would also have the MRI if only for a r/o piece of mind. The neuro????
just my 2,
Feel
Posted by psano2 (Member # 11711) on :
I've been on abx for 2.5 years now. Every time I've tried stopping abx or even changing certain abx, I've relapsed.
I'm just now going through a new change of meds and I'm hoping to be able to remain stable on the new meds bec they're less expensive (no more Bicillin injection) and I'd be really happy not to have to get shots anymore.
8 months on abx just doesn't sound like enough to me in my experience.
Posted by tailz (Member # 10014) on :
Don't get an MRI if you are electrosensitive. I had a SPECT scan, and I almos died during it. Thought it was just the Lyme at the time, but electromagnetic/radiowave fields are my main problem - even more so than the Lyme. My Lyme is just a symptom of an even bigger problem.
Posted by treepatrol (Member # 4117) on :
Get back on treatment.
Posted by CD57 (Member # 11749) on :
hi Webmeg,
Have you ever heard 18 months minimum treatment for Lyme? That is what I hear floating around; I think Dr B says that as well.
That doesn't necessarily include the co-infections either. Have you been tested/treated for those?
MRI not a bad idea for your own peace of mind. Neuros have no clue but your doc can ask the interpreting doc to "rule out Lyme and MS". That's what mine did.
Don't despair. It's great that you were feeling good. You will again. It's just that Lyme and co are not easily shaken.
Posted by MusicMan (Member # 11966) on :
Hi Meg
Did your Doc tell you to go off Abx for a while or did you just decide to try it?
Either way I say go back on them and keep up the good fight!
Steve
Posted by webmeg (Member # 13647) on :
Thank you all for your replies.
I ran out of abx, was feeling pretty good so I decided to give it a whirl and stop on my own.
I'm the one who still uses my regular MD because he's been extremely supportive and very interested in Lyme. He would have given me more abx. He's mentioned IV Rocephin but I'm dragging my feet. I'm going to talk to him tonight.
I really needed to know what would happen. Wow. I now have this terrible low back issue (SI joint) completely locked up again. Haven't had that since summer. I guess it was the Doxy, not the shoe orthotics that fixed that.
Bartonella has been coming up ALL DAY. Thanks for the info on symptoms returning very quickly due to Bart.
I saw a posting about Bartonella and sore feet. I must admit, I have had days were the heels of my feet are extremely sore - I have to put shoes on in the morning just to walk around and make breakfast.
I guess this is a Bart thing? What do they use to treat, Levaquin?
I thought I would last longer feeling well if it was Lyme, that it would take a month for things to go down hill...
Maybe it is Bartonella? I've never been tested.
Is Quest lab half way decent for Bartonella testing or is it another deal where it's hard to detect??
I hate to pay out of pocket again for an IGeneX test.
Guess I'll be hanging out with you all quite a while longer. Thanks for the support.
~webmeg
Posted by CD57 (Member # 11749) on :
The problem with testing for bartonella is the same as for babesia....there are many, many strains and they can only test for I think 3 at this time. Will your doctor treat you for bartonella/BLO clinically, that is, without a test?
Posted by Keebler (Member # 12673) on :
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I assume you are gluten-free. If not, doing a test run off gluten may show some improvement.
Enough liver protection and support ?
And, have you been tested for Cpn ? Some lyme patients have this as well. If so, tx is similar and might be more politically accepted, too. One place to get more info is at: www.cpnhelp.org
Also, might porphyrin build-up be involved? some of the symptoms can be the same as with neuroborrelia? Certain preventative measures can help. ( www.cpnhelp.org/secondaryporphyria )
If you are sound sensitive be very wary of MRI, even with earplugs, it has set me back years . . . and with very little to show for it.
Unless you have a LLMD who can order it with specifics and also read the MRI it may not be worth it. As well, although your doctor is LF, if you see a neurologist, can you find one who is ILADS, LL?
Good luck. Do yourself a favor and let go of questions of somatic, etc. Partly because you don't want to ask such questions of any doctors who think most things are - but also, I think, at some point we all beat ourselves up for not having overcome this yet.
Hopefully, the proper tools will come along for all your hard work to pay off. Good luck with the next step.
--
added: unless you got treatment right after being infected, six-months of treatment is not an adequate amount of time, according to literature from ILADS reseachers.
It could take a couple of years with varying degrees of medicines and changes.
I don't see the point of retesting unless you do it for other coinfections. Sadly, this is not a quick cure.
In one of Dr. B's videos from about 10 years ago, I recall him addressing a panel of doctors who thought frequent retesting should be able to determine the progress of patients.
He said that "Bb is not like any other sort of infection" and that it cannot be treated as such - testing during treatment is not the tool we wish it were.
Again, best of luck. Patience, peace and diversion to you.
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Posted by Keebler (Member # 12673) on :
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If you are off abx now, something to tide you over may be a good quality olive leaf extract for the antimicrobial aspect and cordyceps or another good medical mushroom to help support your endurance.
Allicin, too, may be of some use. WITH food, in middle of a meal. Don't lie down for a while afterward. Make subliminal suggestions to family and friends that they like Italian food, smothered in garlic.
(and remember there are some really nice rice pastas out now).
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