Hi. It's been awhile. Just thought to drop by after months of abx therapy.
I think for me one important thing I'm having to learn in this whole thing is accepting the way things are and learning to adjust appropriately.
I'm now been on (with breaks) about 5 months of abx therapy as well as a healthy diet (about a year now).
The one thing physically that has changed for the better is my Gut.
No more problems there. Oh, and I don't get infections quit so often.
But, as far as my other more severe Neuro/Anxiety problems which I would categorize under a 'Lyme' problem, that has been a little diabiling, i.e. eyes, ears, head stuff etc.
NOTHING has changed.
I've gone through the whole IDSA gamit like most of us here are familiar with.
It appears I've come to the end of the line with my LLMD aka ILAD Dr. as well.
He was the last of the mohekians as far as in my city goes.
It was a crazy ride.
I took what's called here an LLT spot blood test (very expensive).
It turned out apparently contradicting my positive Wb test.
At least I never really IMO got a clear answer as to what it is exactly that's making my life miserable.
It's hard to know where to shoot when you don't know exactly who the enemy is.
Anyways, It indicated that Lyme wasn't presently active but maybe a co-infection.
Anyways, I'll leave it there.
Very confusing, expensive test though that didn't help much.
Going back,,
We shouldn't ever lose hope but I think there's a point sometimes where it's time to accept the
situation and to try to make the best of it and of what you still have.
It helps maybe at least to move on although ever slowly.
Posted by Keebler (Member # 12673) on :
- Fred,
"5 months of abx therapy" is NOT adequate. Not by a long shot.
"eyes, ears, head stuff, . . .NOTHING has changed"
Sorry to hear that, of course. Still, accepting failure when treatment has not been adequate is not an option. Sorry.
Five months is a drop in the bucket, against borrelia b. It's far sturdier than that. And you can be, too, it's just going to have be in different ways.
Testing lyme now is a waste of time and money.
It can take even a few years before improvement may be seen. Sounds like your doctor is not really a LLMD after all.
Last year, as I recall and just scanned in your previous posts, you had a positive IgM Western Blot along with most of the classic symptoms.
I recall your earlier posts last year.
You do not need any more lyme tests. I also question that test that reverse the previous finding.
Lyme does not work like that.
It's the WISDOM of the doctor (in how he can "read your body") that matters in figuring out priorities and the shifting that goes with treatment.
It appears that you need a better LL doctor with knowledge about how to treat ALL aspects as lyme is never "just" lyme but that does not mean it ever can be put on the back burner. No degree of testing for lyme now is going to help.
As long as you have symptoms, lyme is to be considered as still a key part of the picture.
I know this is hard and I don't have the time, energy or skill to say just the right things. Accept that it may take a while, and that the road can be bumpy and vague but it sounds like you don't have the medical & support guidance needed. Somehow, I hope that comes to you.
The neuro symptoms you describe are lyme. But they could also be other tick-borne infections. Have you been assessed for Bartonella, Babesia, etc.?
Do you still live in Austria? There must be other options. I know there are.
What about going to Germany for Bio . . . (forgot the term). . . for a different KIND of treatment?
How about getting a RIFE machine?
1. Know Lyme. Know that once there, it's not just going to disappear.
2. Know how Lyme works, ALL the tricks up its sleeves. All the forms, cycles and what works and what does not again each of those forms. Antibiotics certainly won't work against the cyst form, for example.
And antibiotics will not work against Babesia.
3. Know who Lyme plays with (parasites, Bart, Babs, etc.)
3. Find another way to hit a triple header - and you can't ignore the fact that lyme is still holding onto a key base. -
[ 02-15-2013, 05:00 PM: Message edited by: Keebler ]
Posted by Lymetoo (Member # 743) on :
Please do not give up. Why not order the Healing Lyme book by Buhner and get on some herbs if you are having trouble getting treatment.
A good Dr would still be treating you.
Posted by Robin123 (Member # 9197) on :
I agree with you about accepting where we're at. Then at least we're not fighting it, and there is a benefit to trying to relax as much as possible with what's going on.
At the same time, we will stay where we're at unless we try things. If we try things and they change us, we'll be in a better place.
Example for me - yes, I've accepted that my muscles go into spasm and stay that way, for the last 30 years -
I agree with Keebler and Lymetoo - I don't think you've treated long enough.
You mention eyes - I've been able to stop my Lyme eye symptoms by drinking mangosteen juice, an anti-inflammatory juice. You can find varieties in healthfood stores. We're all different in how we respond.
then this week, with my trying Calm magnesium powder that stopped the muscle spasms, amazingly, meaning my body needed that magnesium, I'd rather get used to a new normal, if you get my drift.
That's why my vote is for researching what next to try to see if it can make a difference.
Posted by lax mom (Member # 38743) on :
Robin: did you find that Calm magnesium worked better than regular Magnesium supplements?
Posted by fred0 (Member # 37371) on :
Thanks for the help.
I'm really in the dark and by myself at this point.
I'm basically on my own but not knowing what to do anymore. Well at least it appears so. My Dr. has given a few other options but I'm not so confortable with some of them.
I've taken Doxy now for 5 months.
Could not tolerate mynotoxin not even a day although originally the dr. said that would be better for Neuro stuff.
Maybe I'll try another abx soon. Something that is believed to hit the cyst form or so.
The confusing part is,...I know 5 months isn't long treatment but how long is long enough with abx..? Nobody really knows.
I was told now the standard protocol is now 2 years abx treatemtn. Wow.
Here I wouldn't be treated more than about 4 months.
I guess this Dr. was as close here as I was going to get to an LL.,,,, works together with Augsburg and attends ILADS conferences,etc..
thank Keebler- I'm a little confused now and honestly probably skeptical of trying some new
things, especially when so much so far has been thowing away money but I appreciate the help.
Lymetoo- that book sounds interesting. Trying herbs doesn't sound like a bad idea.
Posted by Lymetoo (Member # 743) on :
I never heard of mynotoxin???
Which part of CA are you in?? Have you seen the LLMD list for CA?
It took me 4 yrs to get well, Fred. It was worth it.
Posted by Robin123 (Member # 9197) on :
Laxmom, I actually took malic acid and magnesium for many years for "fibromyalgia" - it was helpful for boosting energy, but didn't give me the insight I just got this week from throwing the Calm mg at my bod -
I bet Fred means minocycline?
You say CA here, but maybe you're abroad at this point? Are you needing to find an LLMD in Europe?
Posted by fred0 (Member # 37371) on :
Yes, sorry..I meant minocycline:) Well, honestly I'm not sure what I'm looking for.
I'm still with this Dr. here although it's come to a standstill.
Finding another Dr. would mean another country. I just have to see.
Posted by Keebler (Member # 12673) on :
- You might explore rife with the guidance of what would equal a LL ND here. Those ND links won't connect in your country but you should be able to find an expert with similar training who is also LL.
Not rife, but another method being used in Germany, Iceland and a few other places is called Biophoton therapy, a Bionic 880. It's not that far from you. The Bionic 880 links are near the end of the ND thread.
I took that European test shortly after I was diagnosed and had found an ILADS associated, LL Dr..
So, probably around last May.
He prescribed the test which included the LL-spot (now only in Europe), CD57 and testing for co-infections.
It's standard procedure.
The test was done in Germany.
The test at that time IMO contradicted how I was feeling, i.e. my symptoms and the Wb test I got back from a 'normal' Lab here in Vienna.
It read that my Lyme infection was basically 'inactive' (the LL-spot= 0).
At least that's what I understood with my cloudy brain.
My CD57 was under the norm but not that low (though I felt horrible).
It also indicated I had Mycoplasma N. (yet another controversy) if really accurate.
No other co's were indicated.
I asked for more clarity concerning this test but didn't get a clear answer.
I mean I can understand to some degree.
It's hard to figure out exactly what's going on with me through any test for sure.
Nonetheless, that test confused me as far as how to proceed exactly although that's what I did, proceed with treatment.
I was offered alternative options by my Dr. for treatment.
This Dr. is into alternative treatments.
I was offered the bionic 808.
This might not be very well accepted here but I was skeptical about that treatment and have turned it down.
I don't mean to downplay those who've had a positive experience with it.
I'm just skeptical of some methods, that's all.
In that way and a few others perhaps my Dr. would see me as the difficult patient.
I can't help it.
I know everyone just wants to help but I've learned through some previous life experiences to be careful and not just take everything hook-line and sinker.
Even if you're sick and desparate.
I do appreciate all the help and advice and try to look into everything.
Posted by fred0 (Member # 37371) on :
Sorry, I spelled the name of that test they're using in Europe wrong.
It's called the Elispot LTT. I'll stop hammering on about the test now:)
Posted by Lymetoo (Member # 743) on :
BELIEVE IN YOURSELF!! If you are sick.. seek help!!
I'll be back later.....
Posted by Robin123 (Member # 9197) on :
Treatment is multiple - kill/deter the organisms, detox and fortify. Treatments do one or more of these categories. Whatever works for us works. The trick is to find out what we respond to. Have some patience - you're basically still at the beginning of the healing process.
I'd say also learn as much as you can about the treatments that people try. We can click on the Search function at the top of the page, type in any word or phrase and archived discussions about everything will come up that we can read through. We're all different in what will work for us.
Posted by fred0 (Member # 37371) on :
Ok, thanks Robin.
So can I ask? Since most here are telling me 5 months of abx is not long treatment....
is there an average or minimum length of time people are usually staying on abx? I know it varies but...
My Dr.'s protocol is a 4 month cycle of abx.
@Lymetoo- thanks, you're right!
Posted by glm1111 (Member # 16556) on :
fredD,
Some of the symptoms you describe can be related to a parasite/worm infection now being recongnized as the number one co-infection of Lyme by ILADS. Check the parasite symptom list at Humaworm.
I didn't have any "Gut" issues for yrs and my testing was negative for parasites, but I was loaded with parasites. Only upon taking antiparasitics and salt/c were these parasites uncovered.
Check www.lymephotos.com This is what came out of me after 6 mos of intensive antiparasitics and salt/c. Nothing to be ignored. You don't have to accept where you're at.
Many that have been on abx and chronically ill are now discovering they have this infection. Check out the PARASITE WARRIOR SUPPORT THREAD. I will bring it up to the top for you to review.
Gael
Posted by cozynana (Member # 34270) on :
I too would suggest parasite treatment. Gael visited with me and talked me into to taking them. I think that was my turning point.
Also look into artemisinin and cryptolepis. They are both herbal remedies and can be purchased without a script.
My LLMD has had me on both and think they really hit the Babesia.
I am still on Art and do it 3 days on and 4 days off.
It makes me tremor, shake, get cold and then hot. But, look at it as a herx.
I am doing it for a month and then changing to another protocol of herbal stuff I have not been on before.
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