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» LymeNet Flash » Questions and Discussion » Medical Questions » No better no worse after 1.5 years off tx

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Author Topic: No better no worse after 1.5 years off tx
Chronic Triathlete
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I'm completely stumped with what to do...

I stopped abx 1.5 years ago (after 1.5 years of orals) when I started seeing a new LLMD. I was about at 75-80% of "normal" when I stopped because he wanted to run a bunch of metals and allergy testing. I was happy to stop because I wasn't really getting any better (up from about 50-60%). I've stretched it out this long because and just needed a mental break.

Now, here I am 1.5 years later and I'm no better nor any worse OFF treatment than I was ON treatment. My LLMD seems to think this is because there something else in the way of my getting well.

I just had an WB and for the first time I'm Igenex negative for current infection (see my previous post). He claims this is another indicator of something else holding me back.

I recently tested off the charts for lead and we wants me to do a series of chelaton IVs. While I feel that this is something I should probably do, I don't buy that this is the issue.

I find the fact that I'm no worse while off abx compelling, but I still feel as if I wasn't treated completely. Still, I'm unsure what to do.

Any thoughts? I'm seeing him again tomorrow and I'm not sure if I should really pressure him for abx or go with the chelaton.

Thanks.
CT

--------------------
10.24.07 Sick
03.31.08 Diagnosed IGeneX WB with Bb
04.08.09 Fry Bart

Updated 02.06.10 On an ABX break since July 09, gluten-free, lots of exercise.

My blog: http://www.chronictriathlete.com/wordpress

Posts: 199 | From Brooklyn, NY | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
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Get the lead out! [bonk]
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sutherngrl
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Try chelation first. You can always go back on antibiotics if it doesn't help. Who knows, chelation may be your answer.
Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
the3030club
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i find this interesting because i did 2 months off treatment and didn't really get worse (infact i initially improved off abx, but have now fallen back into the same rut i was in for months prior on treatment)

Let me know what you decide to do. I certainly hope you figure this out.

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sixgoofykids
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If you have metals, I'd also suspect parasites. Also perhaps KPU?

I was IGeneX negative on IgM, but positive on IgG when I was first tested.

--------------------
sixgoofykids.blogspot.com

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Chronic Triathlete
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Goofy You can see my past Igenex results in this post. I've always been CDC neg, but it wasn't until this latest round that I came back Igenex neg. The first was before treatment. The second during and the third a couple weeks ago.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/101368

Never been officially screened for KPU, but all my zinc, B6, manganese, and omega-6 fatty acids come out normal and I don't have very many of the symptoms I've seen listed. I'll ask Dr. M about it.

Thanks!
CT

--------------------
10.24.07 Sick
03.31.08 Diagnosed IGeneX WB with Bb
04.08.09 Fry Bart

Updated 02.06.10 On an ABX break since July 09, gluten-free, lots of exercise.

My blog: http://www.chronictriathlete.com/wordpress

Posts: 199 | From Brooklyn, NY | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
CD57
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Chronic,
How did you test for all your zinc, B6 etc....was that the Spectracell test? Or just do blood tests for each?

Posts: 3528 | From US | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
Chronic Triathlete
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CD57 Just blood tests via my LLMD. Not sure of the brand of test.

--------------------
10.24.07 Sick
03.31.08 Diagnosed IGeneX WB with Bb
04.08.09 Fry Bart

Updated 02.06.10 On an ABX break since July 09, gluten-free, lots of exercise.

My blog: http://www.chronictriathlete.com/wordpress

Posts: 199 | From Brooklyn, NY | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
unsure445
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I would say remove metals.

Maybe you have a very low grade infection load and your immune system is keeping it from worsening. Maybe getting metals out will help your immune system get the rest of the job done without antibiotics.

Otherwise if you have any abx you could always take a few days worth and see if you herx...

Just a few thoughts. Good luck!

--------------------
unsure445

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Annelet
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Be very careful chelating for Lead if you haven't first evaluated for KPU/HPU

I had very high Lead and chelated with EDTA and DMSA. I got so much worse.

What I didn't realise was that I already had KPU....very low zinc....and that the chelation depleted the zinc even more.

Now that I am treating the KPU I am getting back on track.

Posts: 250 | From canada | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
GiGi
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The essential minerals may all show up in the blood. But the KPU pees the stuff out. Down the drain before they can be put to use to work as essential minerals needed to capture the toxic heavy metals and chemicals. When your body can't hold the overload any longer, every body compartment eventually is affected leading to more trouble.

You may want to make sure you test with Allergie Immun and correct dysregulations in the DNA. It is not quick, but the most helpful thing you can do if your body holds on to toxic metals. Your body gets more and more depleted as parasites take over and leave little for you. We are stuck.

Again, testing minerals in blood is useless, because the body will take what it can. But KPU and DNA dysregulations are the problems that need to be addressed ----- and that needs to be done long before you attempt chelation. The body will start getting rid of the stuff without extensive chelation therapy if you give it the right tools back, i.e. eliminate allergies and supply the missing factors due to KPU.

Explaining Allergie Immun:

http://translate.google.com/translate?hl=it&langpair=de|en&u=http://www.allergie-immun.de/

Explaining KPU (scroll down to video)

http://webcache.googleusercontent.com/search?q=cache:uablF1y5HXcJ:planetthrive.com/2010/04/hpukpu-protocol-for-lyme-and-autism/+kpu+klinghardt&cd=7&hl=en&ct=clnk&gl=us

Take care and good luck.

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TerryK
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Get the metals out with the help of a practioner who knows what they are doing.

Clin Exp Immunol. 2007 Aug 2;

Mercury exposure as a model for deviation of cytokine responses in experimental Lyme arthritis: HgCl(2) treatment decreases T helper cell type 1-like responses and arthritis severity but delays eradication of Borrelia burgdorferi in C3H/HeN mice.

Ekerfelt C, Andersson M, Olausson A, Bergstrm S, Hultman P.

Division of Clinical Immunology, and Unit of Autoimmunity and Immune Regulation, Department of Molecular and Clinical Medicine, Faculty of Health Sciences, University Hospital, Linkping, Sweden.

Lyme borreliosis is a complex infection, where some individuals develop so-called 'chronic borreliosis'. The pathogenetic mechanisms are unknown, but the type of immune response is probably important for healing. A strong T helper cell type 1 (Th1)-like response has been suggested as crucial for eradication of Borrelia and for avoiding development of chronic disease.

Many studies aimed at altering the Th1/Th2 balance in Lyme arthritis employed mice deficient in cytokine genes, but the outcome has not been clear-cut, due possibly to the high redundancy of cytokines.

This study aimed at studying the importance of the Th1/Th2 balance in murine Borrelia arthritis by using the Th2-deviating effect of subtoxic doses of inorganic mercury. Ninety-eight C3H/HeN mice were divided into four groups: Borrelia-infected (Bb), Borrelia-infected exposed to HgCl(2) (BbHg), controls exposed to HgCl(2) alone and normal controls. Mice were killed on days 3, 16, 44 and 65 post-Borrelia inoculation.

Arthritis severity was evaluated by histology, spirochaetal load determined by Borrelia culture, IgG2a- and IgE-levels analysed by enzyme-linked immunosorbemt assay (ELISA) and cytokine-secreting cells detected by enzyme-linked immunospot (ELISPOT).

BbHg mice showed less severe histological arthritis, but delayed eradication of spirochaetes compared to Bb mice, associated with increased levels of IgE (Th2-induced) and decreased levels of IgG2a (Th1-induced), consistent with a Th2-deviation. Both the numbers of Th1 and Th2 cytokine-secreting cells were reduced in BbHg mice, possibly explained by the fact that numbers of cytokine-secreting cells do not correlate with cytokine concentration.

In conclusion, this study supports the hypothesis that a Th1-like response is required for optimal eradication of Borrelia.

PMID: 17672870 [PubMed - as supplied by publisher]

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mazou
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Being a former Brooklynite (and missing it), I am not surprised about the lead levels. I think a lot of the older buildings still house lead piping and lead paint is legal on the ceiling... or so they say.

After moving out, I decided to run a home chelation experiment. I juiced a large bunch of cilantro and drank it down on an empty stomach. My scalp broke out in a huge rash and I lost about 1/8 of my hair. So easy there. : )

I am no better or worse either, if that is any consolation. I have been off abx since late 2009. Currently practicing the art of denial, LOL.

Please let us know what direction you decide to go. It will be helpful to me to find out.

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Abxnomore
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You will never get well until you chelate out the metals.

Get the lead out and what ever metals may be elevated in your system.

How did your LLMD check for metals, by what method. It seems strange that you would only have elevated lead and not other metals.

And, as has been stated above, do your research about how to chelate out the metals. Make sure you have someone who really knows what he is doing. You have been given good advice already about what to check for about chelating metals.

ABX won't do a thing for metals, as you know. You will never get well or make any improvement until you get them out.

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Shahbah
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Hum, what about detox, lymphatic system may still have to evacuate loads of toxins... What are your remaining symptoms? But overall, this is all good news.
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minerva
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i agree with folks here....deal with the metals just do it very carefully!

i would also look at your detox pathways KPU metylation etc. its possible that is the reason you are "stuck". my minerals levels were fine but i tested postive for KPU. the KPU test is a different test then vitamin levels.

sometimes treating and finding high levels of metals is a good sign...meaning that the metals aren't hiding.

you could have moblized things by treating but now you want to get rid of them without just moving them to a new place in your body. i am assuming that lead is similiar to mecury in how it hides with the lyme etc. but i honestly don't know. were you tested for other metals then lead?

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Chronic Triathlete
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I was tested for a whole slew of metals first with oral DMSA. These results were way high (lead) so he had me retest thinking the test was screwed up. Sure enough, the second oral DMSA showed elevated, but significantly lower levels. As a tie-breaker I did an IV of EDTA (I think). This came out in the middle with high lead and elevated other things.

Off the top of my head aluminum, lead, gladinolium (spelling?), mercury and uranium (whoa!) were high or elevated.

LLMD says to do 5 weeks of 1x a week IV chelation and then retest.

Will be taking some sort of mineral replacement during this time.

He also said to be on the lookout for a herx as the chelation agent is also known to dissolve biofilms and release bugs. Depending on how I feel, he may opt to introduce an ABX into the treatment.

As for remaining symptoms... it's mostly neuro... fog, concentration, jittery, tingling.

Thanks for the comments.
CT

--------------------
10.24.07 Sick
03.31.08 Diagnosed IGeneX WB with Bb
04.08.09 Fry Bart

Updated 02.06.10 On an ABX break since July 09, gluten-free, lots of exercise.

My blog: http://www.chronictriathlete.com/wordpress

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lou
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What is your coinfection status?
Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Chronic Triathlete
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Confections = babs neg from Igenex and BLO pos (maybe) from Fry.

--------------------
10.24.07 Sick
03.31.08 Diagnosed IGeneX WB with Bb
04.08.09 Fry Bart

Updated 02.06.10 On an ABX break since July 09, gluten-free, lots of exercise.

My blog: http://www.chronictriathlete.com/wordpress

Posts: 199 | From Brooklyn, NY | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
Abxnomore
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I highly doubt that 5 weeks of IV chelation will be enough. Usually you do at least 30. I think retesting at 5 is a waste of money. And made sure he checks your kidney clearance on about the third IV.

Also be sure to take supplements to assist the chelation carry the metals and toxins out of your body such as NAC, ALA, Vitamin C, chorella, garlic, and cilantro.

Is he using sodium or calcium EDTA? Not all metals respond to EDTA. Mercury often responds better to DMSA.

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Chronic Triathlete
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Abaxnomore... never said that he said 5 weeks was "enough". That's just all that's on the to do list right now. Reevaluation in 5 weeks.

EDTA right now.

Thnx.
CT

--------------------
10.24.07 Sick
03.31.08 Diagnosed IGeneX WB with Bb
04.08.09 Fry Bart

Updated 02.06.10 On an ABX break since July 09, gluten-free, lots of exercise.

My blog: http://www.chronictriathlete.com/wordpress

Posts: 199 | From Brooklyn, NY | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
canefan17
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What sort of treatment did you do for co's?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Abxnomore
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I understood that but can't image anything will be accomplished in 5 weeks, so I was wondering why waste money to retest. It's a very long term process, could take over a year even more.

Anyway, good luck. I hope it helps you.

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Ariel1
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Chronic Triathlete, Your situation sounds just like mine's.

I was taken off antibiotics since I plateaued at 75-80% improvement.

I tested high for mercury and have started detox.

My first chelation will be in two weeks.

I am interested in how yours goes.

Please update us when you can.

Posts: 88 | From DC Metro area | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
Chronic Triathlete
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Ariel1... There's another recent thread that I started with more of my recent chelation experiences.

I owe my blog an update. Will try to get to that soon.

Good luck.
CT

--------------------
10.24.07 Sick
03.31.08 Diagnosed IGeneX WB with Bb
04.08.09 Fry Bart

Updated 02.06.10 On an ABX break since July 09, gluten-free, lots of exercise.

My blog: http://www.chronictriathlete.com/wordpress

Posts: 199 | From Brooklyn, NY | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
NMN
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Chronic T,

I read you post on how you did two challenge tests. I want to tell you your doc does not know his arse from a hole in the ground when it comes to chelation by the sounds of things.

Of course your Lead was lower upon retesting, your first round cleared the bloodstream and peripheries of Lead and it takes time for the lead to leach out of the bones and deep spaces where it is stored. Chelation for lead is a long process done much less frequently than mercury.

I have to urge you to research Andy Cutlers methods of chelation and follow it to a tee.

You must chelate Mercury and Lead over a long period of time using frequent dosing schedules to maintain stable blood levels in order to minimie redistribution.

I am also very high in Lead and high mercury and stuck in the mother of all plateaus for 2 years.

These metals are synergistic and one plus one is not two, its a thousand. Do 100mg of ALA and 100mg of DMSA every 4 hours 3 days a week day and night and you have a chance of getting well.

Best of Luck.

--------------------
Pos BB and Bart(Q & H IGG pos)
Began treat 1 year after start of illness. Diagnosed Feb 2007.

Posts: 648 | From Ireland | Registered: Jan 2007  |  IP: Logged | Report this post to a Moderator
Chronic Triathlete
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NMN... It's obviously impossible to give to convey all of the details of my treatment through a handful of post on this site.

I appreciate your effort to be helpful (I think), but you should really think twice before you publicly disparage a successful LLMD like that. If you want to convey your opinion about my doc's knowledge of his arse, a PM is probably the better route.

I would add that the fact you've been in a plateau for 2 years while following Mr. Cutler's approach is not the best endorsement.

--------------------
10.24.07 Sick
03.31.08 Diagnosed IGeneX WB with Bb
04.08.09 Fry Bart

Updated 02.06.10 On an ABX break since July 09, gluten-free, lots of exercise.

My blog: http://www.chronictriathlete.com/wordpress

Posts: 199 | From Brooklyn, NY | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
timaca
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Consider getting tested for Enteroviruses or other pathogens.

See: http://chronicfatigue.stanford.edu/

Best, Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
NMN
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Let me re-phrase. I have a brilliant very well known LLMD also, but I do not ever think he knows everything. They are just that, lyme literate doctors. They are not experts in chelation.

Secondly, I have been in a plateau BECAUSE of ill conceived and damaging chelation protocol endorsed by ILADS LLMD's.

I am still under his care I just choose to use proper chelation methods.

I have only began using cutlers chelation as of the start of this year and I am now beginning to get better.

ILADS docs are not immune to criticism if it is due.

--------------------
Pos BB and Bart(Q & H IGG pos)
Began treat 1 year after start of illness. Diagnosed Feb 2007.

Posts: 648 | From Ireland | Registered: Jan 2007  |  IP: Logged | Report this post to a Moderator
Chronic Triathlete
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quote:
ILADS docs are not immune to criticism if it is due. [/QB]
That's kind of my point... you don't know if it's "due" because you only have a slice of the story.

Glad you're feeling better.

Cheers.
CT

--------------------
10.24.07 Sick
03.31.08 Diagnosed IGeneX WB with Bb
04.08.09 Fry Bart

Updated 02.06.10 On an ABX break since July 09, gluten-free, lots of exercise.

My blog: http://www.chronictriathlete.com/wordpress

Posts: 199 | From Brooklyn, NY | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
   

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