oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I like my integrative medicine doctor. I don't do abx for lyme although he often treats people with abx and holistic/nutritional interventions.
Several times he has said to me in a friendly way that he is concerned (I tend to do the protocols that work for me, that I have determined over years) that I should at least be monitoring my lyme if not doing abx and then retesting to see how my protocols such as my home chamber etc are working, since this bug can percolate and cause damage that he has of course seen in his practice.
I have agreed with him but not sure what to do. I do hyperbaric once a week, IVIG once every two weeks, and my vitamins minerals and glutathione.
Early in lyme with my bullseye I also did an elisa that had sky high antibodies and a stonybrook western blot which was cdc positive. Later that summer I repeated the western blot which was still positive on IgM and IgG.
I suggested to him maybe do an Igenex western blot just to see, but, at this stage of 7.5 years into lyme perhaps a low antibody response would not be indicative?
I don't want to take any abx so forget that, that is not an option.
I was considering some Buhner herbs, I feel safer with that approach than Cowden's, I suppose I could monitor that way? But my doc is not too comfy with the herbs as no real research on them.
This is the second time he has said it to me in the last say, four months, and he says it out of concern and kindness, he isn't being pushy.
Yet because my protocol is unusual I'm not sure what to do.
I lean towards trying the western blot yet I know these things are not so indicative later in the infection. Obviously I had a classic response early on in every way.
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Unfortunately, the tests are not very good at telling you how high a load of Lyme you have. A low antibody result could just mean you have a compromised immune system that is not creating the antibodies.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You said.. "I don't want to take any abx so forget that, that is not an option."
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
What about the flow cytometry test from CFL, Oxy?
At least the test looks for evidence of the bugs instead of antibodies. Granted, it is still a blood test and if the Bb is doing most of its dirty work deeper in tissues, then no antibody or antigen test is going to show much.
Another thing to consider is a good ART practitioner or kinesiologist and 'test' that way to monitor your bug load and the effectiveness of treatment. It has certainly worked for others here.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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quote: But my doc is not too comfy with the herbs as no real research on them.
There has been a ton of scientific research on Lyme fighting herbs (some herbs more than others). There are lots of research paper references in Buhner's Lyme Book as well as in Dr.Zhang's book.
Plus, herbs are not carcinogenic or liver- destroying like Flagyl or Ketek!
Posts: 655 | From USA | Registered: Sep 2007
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hi Tincup, because I end up much worse off on abx and not from herxes. From major overwhelming fungal issues that start within a few days and are resistant to diflucan.
The sinus and ear and bladder problems from fungus, the diarrhea, the inability to tolerate anything with any carbohydrate (such as a spoonful of beans even), the low grade fevers I start running, the absolute crushing fatigue from the fungus, the weird heart palps, it is not tolerable and that's after only a few days much less a few weeks and I did it for six horrible weeks early in lyme that first summer. I could barely stand it and it didn't do much for me.
It's not a herx btw I know my body very well. Actually on amoxicillin 3 g a day for tooth issues a few years ago, my lyme symptoms just improved, my neck became mobile, my buzzing stopped, etc. Without my major horrible fungal issues I would probably have been one of those folks who took oral amoxy for 3-6 months and went on her way...but that's not my destiny.
People think its just my gut but its not. I must have some genetic weakness for fungus/candida whatever it is.
Abx are not an option.
But yes--in terms of the herbs--that was my idea, just that, he really doesn't want to oversee herbs as he's not comfortable with the level of "study" on them and I do respect that. I made a list and talked to him about it some months ago, of plans I had to go to the next step with my protocol. I tested my Vitamin D and it was lowish normal, but normal so didn't need to supplement. I added back in my vitamin/mineral Iv's. I've been meaning to try Immunfactor but it's expensive and I already spend lots of money on other exorbitant supplements such as comitras which helps downregulate MMP-9 etc.
He's basically saying--let's monitor it, lets try to see objectively how your therapies are working and whether we should do more. I do agree. Its just as the other person said--at this stage, antibodies may not reflect...obviously I know I still have the bug. He suggested PCR but I think thats for people without my history which is a very clearcut case with every classic positive sign, bullseye, stiff neck, fever, high elisa, and positive western plot by cdc. So its obvious the bug is there.
Well all input is appreciated...of course the other issue is that I do have babesia according to Igenex plus its epidemic where I was bit, giemsa smears did not show it, meaning its in very low numbers...yet intuitively I have sometimes felt the babesia is my main problem...I could be wrong of course...
Oh and Truthfinder he does keep recommending his "allergist" well the guy is not that, he's a mystical ART type practitioner who tests you for the bugs and gives you drops. He did test me for babesia but...I don't know why...maybe its just all the time involved...I have not pursued. He gave me drops and I didn't take them. I guess its sort of like nosodes of the bugs essentially trying to shift your response to them. I guess I just don't feel that approach is right for me tho as you well know I am VERY interested in classical homeopathy.
I suppose I could have his guy muscle test me for the borrelia--the babesia wasn't bad, actually which was surprising. I didn't have a big reaction.
I suppose he could do it again for lyme...sorry I'm repeating myself...maybe I *will* do that on Tuesday when I go.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
I was curious if you have taken antibiotics since you started IVIG? Someone posted that their candida issues were helped with it?
I'm hoping that is the case as we're currently petitioning insurance for my husband's (lyme-induced) myositis and I was hoping it would help with his candida too.
Posts: 984 | From San Diego | Registered: Nov 2006
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Well, I dunno.
How helpful is that? It is, you must admit, clear, concise, and honest.
So to recap if I have this right: you'd like some hard evidence about whether the LD is progressing in your body.
--Symptomology is currently stable (??) giving no indication of your LD situation.
-- The 2 options you see are 1) testing via bloodwork, which gives ambiguous results, or 2) challenge to initiate dieoff?? or challenge with herbs to initiate antibody response, then WB testing??. Either way,there isn't anything you are able to take that will give you an unambigous herx and/or antibody response.
I think the WB would be interesting, no matter what, as a data point. You're anticipating (I assume) a low antibody response without some kind of a challenge because you've got your sx under control sort of.
What if you don't get a low antibody response -- that would actually tell you something about how well your protocol is working to limit damage such as arthritis, brainfog, etc. in the face of a known ongoing raging infection.
And if you tried something like Buhner, and did the WB again in 6 months, and it changed...that would be another good data point.
Another possible variation would be do the WB, then stop everything you're currently doing for a month, then re-WB.
I can't think of any other ways to test. Would be interesting to do an ART test and the WB (or whatever blood test you choose) and see if you can make any correlations about the outcome.
I guess one of the questions is -- if the bloodwork or challenge does indicate an ongoing raging infection, would you actually do anything different? Because I don't see any point in testing, other than the need for information, if you're don't have an option for changing your protocols. Might just be an upsetting expense that has no application.
FWIW, I finally got a positive IgM 15 years after being dx, and after being off abx for 6 mo. I was becoming symptomatic again and was on Buhner.
I'd be interested to hear what you do and how it turns out. Best of luck!
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hi...in regards to IVIG/fungus--yes it helps with everything. Its great. I take very low amounts--3-5 grams every other week. I'm the queen of low dose therapies ...its tweaking the immune response mainly, the balance, I never take high amounts of anything. Same with my vitamin and mineral IV's. Went way downhill without them for 10 months, but I purposely get low dose--its crucially helpful but doesn't overwhelm my system.
So I do recommend LOW dose IVIG. Otherwise, drip it slowly and be aware it increases blood viscosity for at least 3 weeks so there is a small danger of thromboembolism, one I wish to avoid which is why I do low dose.
Anyway.
Minou I am leaning toward that idea, to let his woo woo allergist test me for borrelia and to run a western blot for the heck of it.
I've known asymptomatic people test highly positive on western blot and people sick as dogs test negative so...that's my hesitation. My assumption is that I have less antibody response now because...in the beginning the inflammatory respnose was SO marked and I was in SUCH pain!!! Over time my body has unfortunately downregulated that but also downregulated my immune response...
I never did do my ideal treatment, knowing that 3 mos of hyperbaric at 2.4 ata will suppress all spirochetes (but obviously not their seeds or spores or whatever latent form they go into)...and then 3 mos after that with no treatment they come back (a guinea pig study) I would've done 3 mos hyperbaric at 2.4 with eyes SHUT to minimize eye changes then immediately gotten a home chamber and done it one or two times a week, which would probably keep the ketes very low because the environment would not be positive.
But I can't do that at this point so...
I like the idea of doing the woo woo allergist, the western blot, then trying some herbs and retesting. It is expensive tho. I am always robbing Peter to pay Paul so to speak. I have to think about tests and whether to take them because they come out of my supplement money.
My path thus far has been to immune modulate, to suppress ketes thru my home chamber, to upregulate system and minimize damage thru IV glutathione, IV vitamins and minerals, IVIG in low dose, comitras and Immunity from atrium biotech, and was as I said thinking of adding ImmunFactor (targeted transfer factors, thought I might target fungal and viral that way and see what happens, maybe strep and staph too).
Anyway, when you work with a practitioner you like, you need to also respect them and their "needs" so to speak and he is rightly nervous having seen people with chronic lyme seem to get better then years later manifest, say, cardiac issues and need a pacemaker. I appreciate his concern and so, I don't want to just ignore it...
Posts: 2276 | From united states | Registered: Jun 2004
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Minoucat:
1st off, I have to congratulate you on finally being positive!
Oxygenbabe:
I know he's being helpful, but I don't see the point in all the testing or modifying your protocol. YOU ARE IN REMISSION; WE ARE REJOICING!!!
I wouldn't touch a thing. Do you know how difficult (you clearly do) it is to achieve this?
So I would seriously hesitate with respect to "doing" anything. You seem aware with your body. You'd know if something changed, wouldn't you? I don't think you can pre-empt a relapse, or eradicate the possibility of Lyme; only manage the remission as well as possible.
And what difference would test results play in this? If your doc wants them, OK, but what is a negative result going to mean? I think it means zero.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
CanLyme, I didn't give the right impression in my posts. I'm not in remission. I would say each of the therapies I use really helps me, but I am chronic, I have altered my life a lot to adapt to it. I don't travel much, I'm often fatigued, and I have moderate fibro, which I tend to notice when I walk around a lot. I know the bug is active in me I just sort of hem it in with all these therapies and I have to say that early on, abx didn't do much for me and I was declining and really terrified, and hbot saved my life.
The bug and how it affects my nervous system has altered me, I'm more moody, irritable, esp with noise in my environment and too much stimulus. For instance I don't like crowded movie theaters at all anymore. And noise just drives me crazy!
And I've been thinking lately about working on my cell membrane with lipids as I think the spirochetes inadvertantly create problems by attaching to the cell membrane and releasing chemicals to create inflammation so they can adhere and penetrate. The inflammation in that lipid membrane degrades the cell's function and then that inflamed porous messed up cell membrane can't function properly.
Sometimes I wish I had time to study the cascade of effects the spirochete creates and figure out a way to interrupt it or give it something else to bind to that sort of inactivates it. I just never have enough time to really study this and the scientists who have the time and materials aren't interested.
Anyway I appreciate all the responses and I will try the woo woo allergist for borrelia and maybe I will take an Igenex test.
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