Re: To --update?

[Guest guest]

" jill1313 " <jenbooks13@...> wrote:

>

> Okay, are we ready for a DMPS update yet? C'mon its been a few months

> already...I am really interested.

>

***It slipped by your surveillance system last week. Check out post#90019.

[Guest guest]

Thanx . That's promising. How many IV's have you had?

Was talking today with Lance, from whom I got my mild hbo chamber, and

talking about Dr Buttar and transdermal chelators. He said Dr.

Bergeron had been using them since 1998 or so and they were well

tolerated. I didn't know this.

I'm still trying to figure out what to do in terms of testing. I

really cannot get Genovations--not by hook or by crook. And

testing4health, that Rich posted, is Dr. Yasko's company essentially,

but there's no track record there. I could spend $750 and how would I

know if it was legit? It's a saliva test. I don't love that idea.

I'm going to research a bit further. I want to find out my

polymorphisms, get my methlyation cycle up to snuff, and then do

td-dmps (transdermal).

For your " brain pain " --I'm not sure what brain pain means. Do you mean

headaches? In any case, do some googling on hyperbaric oxygen. Harsch,

Heuser etc, you probably have hypoperfusion, and hbo is the quickest

way to fix that imo.

> >

> > Okay, are we ready for a DMPS update yet? C'mon its been a few months

> > already...I am really interested.

> >

> ***It slipped by your surveillance system last week. Check out

post#90019.

>

>

>

>

>

[Guest guest]

" jill1313 " <jenbooks13@...> wrote:

>

> Thanx . That's promising. How many IV's have you had?

***Twelve. Fourteen to twenty is the mininal suggested range in number to

complete. It looks like I'll go for completing twenty given my early objective

progress.

> Was talking today with Lance, from whom I got my mild hbo chamber, and

> talking about Dr Buttar and transdermal chelators. He said Dr.

> Bergeron had been using them since 1998 or so and they were well

> tolerated. I didn't know this.

***My take is to stick with the tried and scientifically proven methods for my

primary chelation therapy. At this point as a PWC I prefer to take as much

second guessing out the question regarding a treatments efficacy as I possibly

can, but I may try transdermals later perhaps as a tune-up therapy way on down

the line.

I'm still trying to figure out what to do in terms of testing. I

> really cannot get Genovations--not by hook or by crook. And

> testing4health, that Rich posted, is Dr. Yasko's company essentially,

> but there's no track record there. I could spend $750 and how would I

> know if it was legit? It's a saliva test. I don't love that idea.

***Well, Genovations originally used saliva testing which I did with kits for

their five panels I brought home with me. Technically this would still very

much work, but I think, and I'm purely guessing here, that they may be somehow

wanting to protect or slow intrusion on what they see as their market advantage

by requiring folks to go do and send in blood draws.

***I don't know if Amy Yasko testing provides the really nice reports with

actionable interpretations like Genovations does to go along with your raw SNPs

test results. However, aside other issues you may have I wouldn't be too

concerned regarding legitimacy based on the idea that she uses saliva as your

SNPs test material.

> I'm going to research a bit further. I want to find out my polymorphisms, get

my methlyation cycle up to snuff, and then do td-dmps (transdermal).

For your " brain pain " --I'm not sure what brain pain means. Do you mean

> headaches?

***Chronic pain on the rt side of my brain and unresolved by any method to date,

pharmacological or otherwise. If you can imagine what having a lead bullet

fragment stuck in one place in your head without you dying might feel like is as

close as an analogy I can think of to relay the experience.

In any case, do some googling on hyperbaric oxygen. Harsch,

> Heuser etc, you probably have hypoperfusion, and hbo is the quickest

> way to fix that imo.

***I've had HBO at major facilities twice now over the last eleven years.

These ventures we're extensive but failed as so often is the case with HBO and

PWCs. Hyperfusion I agree as well as misfolded proteins, aka, amyloids in the

brain are the likely problem while a lesion requiring surgery hasn't been

definitively ruled out too(the last one to fully investigate if all else fails).

***My bp and blood volume appear normalized meaning glutathione repletion and

metabolism have improved.

The methods I've use to make this gain may resolve these remaining issues as I

proceed, but if they don't HBO may be something that might actually help now

with improved glutathione status under foot.

> <davidhall@> wrote:

> >

> > " jill1313 " <jenbooks13@> wrote:

> > >

> > > Okay, are we ready for a DMPS update yet? C'mon its been a few months

> > > already...I am really interested.

> > >

> > ***It slipped by your surveillance system last week. Check out

> post#90019.

> >

> >

> >

> >

> >

>

[Guest guest]

Hi . Responses below.

>

> ***My take is to stick with the tried and scientifically proven

methods for my primary chelation therapy. At this point as a PWC I

prefer to take as much second guessing out the question regarding a

treatments efficacy as I possibly can, but I may try transdermals

>

> ***Well, Genovations originally used saliva testing which I did with

kits for their five panels I brought home with me. Technically this

would still very much work, but I think, and I'm purely guessing here,

that they may be somehow wanting to protect or slow intrusion on what

they see as their market advantage by requiring folks to go do and

send in blood draws.

Thanx, , that's good to know. That encourages me. It just seems

surpassingly strange that Genovations is illegal, but I can order

testing4health from my own home by myself!

Re: reports, no, AMy Yasko charges 3 arms and two legs iwth a long

waiting list to interpret your results, so I'm not going to do that. I

have her " stinky " book , honestly, the book smells really yucky,

but anyway, I think I can figure it out from the book, or perhaps ask

for help from some smart docs, with various connections I have.

>

> ***Chronic pain on the rt side of my brain and unresolved by any

method to date, pharmacological or otherwise. If you can imagine what

having a lead bullet fragment stuck in one place in your head without

you dying might feel like is as close as an analogy I can think of to

relay the experience.

>

Wow. That one's a mystery. Not your scalp, but you feel it inside

somewhere? Perhaps its referred pain from a nerve, or upper teeth?

Just a wild guess.

[Guest guest]

I don't know. I left a while ago because Tony was, imo, harrassing me.

He is very gung ho on lots of longterm high dose antibiotics, does not

believe that lyme or babesia are significant problems, wanted me to

take some gout medicine, and then wrote me an email suggesting I had

peritonitis or some kind of liver infection. It was too aggressive for

me, so I left the list and haven't been back. I do greatly miss Barb

Peck's insights and hope she's doing as well as ever.

>

> Hi Jill,

> Where is everyone on Infections and inflamation2?

> Marie

>

>

>

[Guest guest]

Dr Enlander this is just what I feared.

This really bothers me.

I live in NY. My doc and I have a great relationship going on 3 or 4

years now, we know each other well, she knows and trusts my research

and suggestions for my care and visa versa. I do not want, nor have

the funds, to go to another doctor, in New Jersey, who would probably

be insulted if I willingly paid the initial high consult fee just to

get the Genovations Test. And I have no way to get the Genovations

test as she's NY State licensed and I live in NYC.

This is crappy.

I will do some further research. There has to be a way to test my

SNP's that I can trust.

> Saliva testing is used in " normal " medicine in very few instances,

cystic

> fibrosis, parotid duct problems, mouth infections and maybe a few,

very few,

> others .

> Non medical " doctors " who are not licensed to draw blood, can have a

patient

> give a saliva specimen. To put it bluntly, there is no licence

requirement

> to spit. Saliva labs salivate at these tests, there is no lab

oversight for

> saliva testing.

> That is the basis of most saliva tests being performed, no MD is

needed, no

> stringent lab control. More accurate information can be drawn from

blood or

> other specimens.

> So save your money with regard to these quasi scientific analyses

they are

> notoriously unreliable.

>

>

> Joy

> Research assistant to Dr Enlander

> _www.enlander.com_ (http://www.enlander.com/)

>

>

>

>

>

[Guest guest]

Hi Jill,

> I do greatly miss Barb Peck's insights and hope she's doing as well as

> ever.

>

I miss Barb Peck, too, and am always glad when she drops in on this

list.

Sue ,

Upstate New York

[Guest guest]

" jill1313 " <jenbooks13@...> wrote:

***Chronic pain on the rt side of my brain and unresolved by any

> method to date, pharmacological or otherwise. If you can imagine what

> having a lead bullet fragment stuck in one place in your head without

> you dying might feel like is as close as an analogy I can think of to

> relay the experience.

> >

>

> Wow. That one's a mystery. Not your scalp, but you feel it inside

> somewhere? Perhaps its referred pain from a nerve, or upper teeth?

> Just a wild guess.

***Yup, I think this symptom is the final frontier to my ME/CFS symptomatology.

It's not referred pain from a nerve outside the brain or upper teeth and not

anything to do with the scalp.

***I feel it clearly well inside my right side brain and sort of focused but not

limited to the right temporal lobe. In fact, my right lobe area has a sense of

fullness and density to it contrasted to what I sense about my left brain.

***So, " What's up with that? " is the big question of the new millenia for this

PWC!...So far the leads are as follows:

1) Glutathione depletion leading to cells of the skeletal muscles and right

brain, it seems to me, being the first depleted and last to come back up on line

with an effective repletion process.

2) Misfolded Proteins, aka, Amyloid Protein Plaque build-up compromising

cellular function and processes, which ties back to glutathione depletion.

3) Mercury and other heavy metals build-up in the brain as a result of

glutathione depletion.

4) A lesion(s) creating chronic painful siezure activity(I know if I didn't take

sleep meds. or went cold turkey on them for too long I could end-up like .

This seems obvious to me, but a lesion as the source is not clear).

5) All four above, which begs the questions: Will my current glutathione

repletion methods work with more patience to resolve it all?...Can IV HM

chelation get the job done?...Can HBO really help the process along now though

it failed me in the past?

Do I need to see a neurosurgeon for evaluations beyond what standard PET and

MRIs I had done can detect(eg, do I have a brain lesion creating this

troublesome brain symptom which really only has a chance for resolution through

surgery?)

[Guest guest]

I have no clue. When did it start? The fact that its localized seems

to indicate a localized source, rather than general glutathione

depletion etc. Although, you know, pain is a very strange thing esp.

in the brain. A nerve can trigger neuron activity in the brain and the

neurons close by will get upset too and get overactive, leading to

symptoms of pain in places other than the injury. As you well know,

there is also phantom limb pain, and even phantom tooth pain.

So, if your brain looks normal on scans, its really an odd symptom.

Perhaps it would resolve with time. Having someone go into your brain

to have a look-see seems a bit scary!!!

> 5) All four above, which begs the questions: Will my current

glutathione repletion methods work with more patience to resolve it

all?...Can IV HM chelation get the job done?...Can HBO really help the

process along now though it failed me in the past?

> Do I need to see a neurosurgeon for evaluations beyond what standard

PET and MRIs I had done can detect(eg, do I have a brain lesion

creating this troublesome brain symptom which really only has a chance

for resolution through surgery?)

>

>

>

>

>

[Guest guest]

" jill1313 " <jenbooks13@...> wrote:

>

> I have no clue.

***I'm disappointed then. Your incisive mind and psychic abilities are letting

me down!

When did it start?

***I recall having this same brain pain, but for only one minute when I was four

years old. That was a seizure on the right side brain. I had forgotten about it

completely but was reminded of it after I had a bad reaction to baclofen(a gaba

agonist, strangely) and melatonin(also odd) a few years ago. These were like

throwing salt on a very sensitive wound. They actually enhanced the exact pain

on the right side brain that I have.

The fact that its localized seems

to indicate a localized source, rather than general glutathione depletion etc.

***Well, glutatione depletion directly itself wouldn't do this but what problems

would ensue as a result of long endured glutathione depletion(ie, heavy metal

build-up, misfolded proteins) might. This is the quandry in which I find myself

now.

Although, you know, pain is a very strange thing esp.in the brain. A nerve can

trigger neuron activity in the brain and the neurons close by will get upset too

and get overactive, leading to symptoms of pain in places other than the injury.

As you well know,

there is also phantom limb pain, and even phantom tooth pain.

***Yes. The problem here is the pain is experienced in the brain, not outside

of it. Phantom limb pain, btw, is sourced in the brain despite the experiencers

sense of it in a limb or where a lost limb was.

So, if your brain looks normal on scans, its really an odd symptom.

Perhaps it would resolve with time. Having someone go into your brain

> to have a look-see seems a bit scary!!!

***Yes, I know. I live in there. It is a bit scary!

[Guest guest]

The only thing I would question is if it's really inside the brain.

Perhaps for instance its in the dura, or some part that wraps the

brain and thus feels inside since its not in the skull. Perhaps it has

something to do with the sinus cavities? It seems odd to me that one

would feel pain inside the brain unless you had, and have always had,

some abnormal but benign growth that is pressing on a nerve, or some

abnormal but benign growth of blood vessels? I do know that some folks

with trigeminal neuralgia (I discovered this when googling my tooth

pain before I knewit was a fracture) have it because of abnormal blood

vessel growth pressing on a nerve. But wouldn't that be seen on brain

imaging? Maybe it is worth it to see a top neurologist for better

brain scanning? There are for instance, these benign brain tumors that

are just lots of blood vessels overgrowing, and they can be

successfully operated on. I did watch brain surgery once btw. I

watched a neurosurgeon clip an aneurysm in the brain. It was really

kind of fascinating.

> >

> > I have no clue.

>

>

>

> ***I'm disappointed then. Your incisive mind and psychic abilities

are letting me down!

>

>

>

> When did it start?

>

>

>

> ***I recall having this same brain pain, but for only one minute

when I was four years old. That was a seizure on the right side brain.

I had forgotten about it completely but was reminded of it after I had

a bad reaction to baclofen(a gaba agonist, strangely) and

melatonin(also odd) a few years ago. These were like throwing salt on

a very sensitive wound. They actually enhanced the exact pain on the

right side brain that I have.

>

>

>

> The fact that its localized seems

> to indicate a localized source, rather than general glutathione

depletion etc.

>

>

> ***Well, glutatione depletion directly itself wouldn't do this but

what problems would ensue as a result of long endured glutathione

depletion(ie, heavy metal build-up, misfolded proteins) might. This

is the quandry in which I find myself now.

>

>

>

> Although, you know, pain is a very strange thing esp.in the brain. A

nerve can trigger neuron activity in the brain and the neurons close

by will get upset too and get overactive, leading to symptoms of pain

in places other than the injury. As you well know,

> there is also phantom limb pain, and even phantom tooth pain.

>

>

>

> ***Yes. The problem here is the pain is experienced in the brain,

not outside of it. Phantom limb pain, btw, is sourced in the brain

despite the experiencers sense of it in a limb or where a lost limb was.

>

>

>

> So, if your brain looks normal on scans, its really an odd symptom.

> Perhaps it would resolve with time. Having someone go into your brain

> > to have a look-see seems a bit scary!!!

>

>

>

> ***Yes, I know. I live in there. It is a bit scary!

>

>

>

>

>

[Guest guest]

" jill1313 " <jenbooks13@...> wrote:

>

> The only thing I would question is if it's really inside the brain.

> Perhaps for instance its in the dura, or some part that wraps the

> brain and thus feels inside since its not in the skull.

***Well, the pain is deep in the brain on the right side. I'm clear on the

location of the pain and the only thing I can see from reading a bit on the

topic is a benign lesion of some type existing most likely in the temporal lobe.

Epilectics sometimes have many several small lesions like this.

Perhaps it has

> something to do with the sinus cavities?

***Sinuses are clear on MRI and I've never had a sinus infection of any kind.

My sister gets sinus infections that can be troublesome to clear at times. She

knows how I feel when this happens though my symptom has yet to find a solution

while her sinus infections when cleared leave her a healthy happy camper to

carry on her non-CFS lifesyle.

It seems odd to me that one

would feel pain inside the brain unless you had, and have always had,

some abnormal but benign growth that is pressing on a nerve, or some

abnormal but benign growth of blood vessels?

***This is along the lines of my thinking. But not to forget heavy metal

toxicity can happen as a fetus, a la " Fetal Metal Syndrome " (Mom did have a mouth

full of mercury-silver amalgams while carrying me). Amyloids, misfolded

proteins, are now recognized as be able to begin in childhood.

I do know that some folks

> with trigeminal neuralgia (I discovered this when googling my tooth

> pain before I knewit was a fracture) have it because of abnormal blood

> vessel growth pressing on a nerve. But wouldn't that be seen on brain

> imaging?

***Yes.

Maybe it is worth it to see a top neurologist for better

> brain scanning?

***I hope to avoid this, but it is on my list. I haven't had an fMRI and

intercranial QEEGs have caught many lesions other methods have missed.

I guess my question really is are such benign lesions ever known to clear up by

methods other than surgery. I'm guessing if they're congenital may be not, but

who know? Further diagnostic investigation does seem warranted.

There are for instance, these benign brain tumors that are just lots of blood

vessels overgrowing, and they can be successfully operated on. I did watch brain

surgery once btw. I

watched a neurosurgeon clip an aneurysm in the brain. It was really

kind of fascinating.

***Well, I did have a scan done of my cranial blood vessels that failed to

reveal anything like this, but apparently even that scan can miss vessel

malformations at certain angles and locations.

[Guest guest]

,

My son developed Lyme disease symptoms at age 30 after being

completely healthy his entire life. His major symptom was extreme

pain in his brain behind his eye on one side of his head. This was

so severe he was nauseated, lost his balance, had blurred vision and

could not work or drive. His diagnosis - Lyme Disease. They think it

is quite likely he was infected from me before birth and then bitten

by more ticks growing up, but had no symptoms for many years.

He is doing fine now after about 4 months of antibiotics and now

takes garlic pills all the time, but his tests still show borrelia

and his CD 57 is not good.

a

>

> ***Well, the pain is deep in the brain on the right side. I'm

clear on the location of the pain and the only thing I can see from

reading a bit on the topic is a benign lesion of some type existing

most likely in the temporal lobe. Epilectics sometimes have many

several small lesions like this.

>

>

>

> Perhaps it has

> > something to do with the sinus cavities?

>

>

>

> ***Sinuses are clear on MRI and I've never had a sinus infection

of any kind. My sister gets sinus infections that can be

troublesome to clear at times. She knows how I feel when this

happens though my symptom has yet to find a solution while her sinus

infections when cleared leave her a healthy happy camper to carry on

her non-CFS lifesyle.

>

>

>

> It seems odd to me that one

> would feel pain inside the brain unless you had, and have always

had,

> some abnormal but benign growth that is pressing on a nerve, or

some

> abnormal but benign growth of blood vessels?

>

>

>

> ***This is along the lines of my thinking. But not to forget

heavy metal toxicity can happen as a fetus, a la " Fetal Metal

Syndrome " (Mom did have a mouth full of mercury-silver amalgams while

carrying me). Amyloids, misfolded proteins, are now recognized as

be able to begin in childhood.

>

>

>

> I do know that some folks

> > with trigeminal neuralgia (I discovered this when googling my

tooth

> > pain before I knewit was a fracture) have it because of abnormal

blood

> > vessel growth pressing on a nerve. But wouldn't that be seen on

brain

> > imaging?

>

>

>

> ***Yes.

>

>

>

> Maybe it is worth it to see a top neurologist for better

> > brain scanning?

>

>

>

> ***I hope to avoid this, but it is on my list. I haven't had an

fMRI and intercranial QEEGs have caught many lesions other methods

have missed.

> I guess my question really is are such benign lesions ever known

to clear up by methods other than surgery. I'm guessing if they're

congenital may be not, but who know? Further diagnostic

investigation does seem warranted.

>

>

>

> There are for instance, these benign brain tumors that are just

lots of blood vessels overgrowing, and they can be successfully

operated on. I did watch brain surgery once btw. I

> watched a neurosurgeon clip an aneurysm in the brain. It was really

> kind of fascinating.

>

>

>

> ***Well, I did have a scan done of my cranial blood vessels that

failed to reveal anything like this, but apparently even that scan

can miss vessel malformations at certain angles and locations.

>

>

>

>

>

[Guest guest]

Hi, a.

" pjeanneus " <pj7@...> wrote:

> He is doing fine now after about 4 months of antibiotics and now

> takes garlic pills all the time, but his tests still show borrelia

> and his CD 57 is not good.

>

> a

***Good for him. I've been down the antibiotic route for lyme, mycoplasma and

c. neumonia to such extreme degrees I won't bother to explain. As with most

PWCs trying to treat lyme and co-infections as what is potentially creating

their symptoms, antibiotics have been a tremendous failure.

***I think the problem with PWCs is mostly at the biochemical roots, deeper than

lyme infection, weaponized or not, nor any bug associated with it. There is a

problem with the chronic lyme diagnosis in PWCs, not so much that it's false,

but more along the lines of is it addressing root cause and leading to effective

treatment?

***Correct answer, IMO, is: NO.

It's much more often not a useful diagnosis.

[Guest guest]

I do disagree completely with this, . Formerly healthy people are

felled by a tickbite. Its like night and day.

>

> ***I think the problem with PWCs is mostly at the biochemical roots,

deeper than lyme infection, weaponized or not, nor any bug associated

with it. There is a problem with the chronic lyme diagnosis in PWCs,

not so much that it's false, but more along the lines of is it

addressing root cause and leading to effective treatment?

>

>

>

> ***Correct answer, IMO, is: NO.

> It's much more often not a useful diagnosis.

>

>

>

>

>

[Guest guest]

Got it. I don't doubt that a many a people have had tickbites be the camel that

broke the proverbial camels back as they got sucked down into a hole of chronic

illness. My observation is not challenging that point whatsoever, but to point

out that it now more than fair to relate to chronic lyme disease as a proven

felled and failed hypothesis.

The antibiotic route has clearly been a joke and everyone, with rare exception,

I've ever known, research I've done, the chronicly ill patients at LL docs who

have gone to get treatment at these clinics for years, the Bay Area dx lyme folk

support groups, personal contacts, etc all remain pretty much as symptomatic as

the day before they ever heard of such a diagnosis. They're still freakin'

sick!

To top it off, our local LL docs, one nationally very famous regarded expert,

here in the wider Bay Area never admit failure, but when you talk to their

patients, some still seeing them and many having stopped for wanting to be off a

fruitless treadmill, there is virtually nothing but failure coming from their

mouths regarding lyme treatment. The issue: It's not the bugs, it's the terrain

by far!

It's the camels back that needs major addressing, not so much the straw that

broke it. That back was NOT as healthy as too many people assume it was.

" jill1313 " <jenbooks13@...> wrote:

> I do disagree completely with this, . Formerly healthy people are

> felled by a tickbite. Its like night and day.

>

> >

> > ***I think the problem with PWCs is mostly at the biochemical roots,

> deeper than lyme infection, weaponized or not, nor any bug associated

> with it. There is a problem with the chronic lyme diagnosis in PWCs,

> not so much that it's false, but more along the lines of is it

> addressing root cause and leading to effective treatment?

> >

> >

> >

> > ***Correct answer, IMO, is: NO.

> > It's much more often not a useful diagnosis.

> >

> >

> >

> >

>

[Guest guest]

Hi, Mel.

MelBaldwin <alphabear@...> wrote:

>

> , I had one of those hemmangiomas, a tangle of malformed blood vessels,

in my left temporal lobe. I was barely aware of it, having only mild fleeting,

localized headaches....until I had a bleed and a grand mal seizure.

***Very interesting.

I recovered and take klonopin 1 mg. The point is, these malformations are poorly

perfused and may not show up even with contrast.

***That's very close to what I thought.

I presume you have tried some anticonvulsants??

***Yup. Klonopin. Dilantin. Topomax. A few others. No cigar!

Mel

[Guest guest]

Hi, mjh.

foxhillers@... wrote:

> Mel and

>

> My late son had significant seizure disorder not well controlled by drugs

> and their nasty side effects.

>

> However, he benefitted from Magnesium, B complex+B6, l-taurine and fish oil.

> As well as some others.

>

> We stopped seizure activity with Lobelia inflata extract.

>

> I had wanted to get him to either _www.pathmed.com_ (http://www.pathmed.com)

> or _www.amenclinic.com_ (http://www.amenclinic.com) for brain mapping to

> assess neurotransmitter status.

>

> Hope this helps

> mjh

***That makes sense to me, only I'm including focused glutathione repletion

methods given its depletion can readily lead to kidney taurine wasting and

magnesium wasting which of course are important to neurotransmission,

particularly inhibition of any status headed towards seizure.

***I had my neurtransmitter status done by another group. GABA being low was

the most outstanding feature, NO KIDDING!

***GABA supplementation or any GABA agonist type med. does not make a dent at

any dose and baclofen(GABA-B agonist) as I said increases brain pain. I think

I just need to be more patience with the glutathione, magnesium/B-6, etc methods

I'm exerting on my system for it to eventually crack back to health and give me

the break I'm looking for.

***Three decades of these things not being up to snuff may be does take more

than ten months of well conceived treatment to a brain working, properly

supporting ease-of-thought, energy and well-being!

[Guest guest]

>

> Got it. I don't doubt that a many a people have had tickbites be

the camel that broke the proverbial camels back as they got sucked

down into a hole of chronic illness.

Yes in some cases it was the straw that broke the back. In others

though, many cases I know, these were healthy active people. I was

skimming lyme-aid the other day (I lurk) and a husband posted about

his wife who was, before she got lyme somewhere, in one of 3 pleaces

they're not sure which, was he said, superwoman. So active, so

energetic etc. Now she is in terrible shape.

I think part of the confusion in what we see clinically is: different

strains with widely different virulence, different coinfections and

their different strains. Dr. Shoemaker has speculated babesia and

borrelia both have neurotoxins that disable the immune system, and

I've begun to think the combo is really bad. So you're not seeing one

clinical picture. Its very muddy. Whatever I got in tickbite #2 was a

thousand times worse than tickbite #1, although tickbite #1 obviously

skewered my whole system leading to chronic issues I did not have before.

>

> The antibiotic route has clearly been a joke and everyone, with rare

exception, I've ever known, research I've done, the chronicly ill

patients at LL docs who have gone to get treatment at these clinics

for years, the Bay Area dx lyme folk support groups, personal

contacts, etc all remain pretty much as symptomatic as the day before

they ever heard of such a diagnosis. They're still freakin' sick!

Yes this is true of the ones we know but there are many who take the

antibiotics and get better! I've met them in passing. I might say I

have lyme, someone will say, I had late stage lyme, I took IV for 3

mos, I'm fine now. There *are* many like that. Or even those who were

really really ill, a science journalist I know, took orals for 4

years. She slowly steadily improved and is working two jobs now--i.e.

she's basically well, and has been off abx for over a year. But it

took that long. And she had to do antimalarials too.

So there's a variance. You wouldn't know about her, because she

doesn't have to come on this board, as we do...

>

>

>

> To top it off, our local LL docs, one nationally very famous

regarded expert, here in the wider Bay Area never admit failure, but

when you talk to their patients, some still seeing them and many

having stopped for wanting to be off a fruitless treadmill, there is

virtually nothing but failure coming from their mouths regarding lyme

treatment. The issue: It's not the bugs, it's the terrain by far!

I think it's not an either/or . Nature and nurture are so

complex. Terrain is a murky concept to some extent.

> It's the camels back that needs major addressing, not so much the

straw that broke it. That back was NOT as healthy as too many people

assume it was.

>

This is true in many cases and with many bugs but I've come to have a

deep respect for and horror of the cunning and power of borrelia.

[Guest guest]

" jill1313 " <jenbooks13@...> wrote:

> <davidhall@> wrote:

> >

> > Got it. I don't doubt that a many a people have had tickbites be

> the camel that broke the proverbial camels back as they got sucked

> down into a hole of chronic illness.

>

> Yes in some cases it was the straw that broke the back. In others

> though, many cases I know, these were healthy active people.

***Don't want to belabor the point too much more, but if the person ends up with

chronic illness where it is tough to discern actual cause you gotta think

systemic, not just associated positives

for infection which there can be plenty like I've had yet not be causal. The

fact that a person felt healthy and was active is by no means evidence of true

systemic health.

***A system, like the pillars of a bridge, can be cracking at the seems but

still do its job of holding up the road for a while with no hint of a problem to

the crossers who think " what a beautiful strong bridge! " . They're experience is

legitimate as an experience and of immediate pragmatic value, but it is utterly

false as an estimation of the true health of the bridge.

***Remember the so many examples of folks finding out the have terminal cancer,

that has been developing for years in there bodies, by a routine screening and

are flabbergasted because they've never felt better in their lives. They feel

quite healthy and well. However, they are systemically, and in fact, in

extremely poor health.

sideI was

> skimming lyme-aid the other day (I lurk) and a husband posted about

> his wife who was, before she got lyme somewhere, in one of 3 pleaces

> they're not sure which, was he said, superwoman. So active, so

> energetic etc. Now she is in terrible shape.

>

> I think part of the confusion in what we see clinically is: different

> strains with widely different virulence, different coinfections and

> their different strains. Dr. Shoemaker has speculated babesia and

> borrelia both have neurotoxins that disable the immune system, and

> I've begun to think the combo is really bad. So you're not seeing one

> clinical picture. Its very muddy. Whatever I got in tickbite #2 was a

> thousand times worse than tickbite #1, although tickbite #1 obviously

> skewered my whole system leading to chronic issues I did not have before.

***I suggest demanding more clarity from Dr Shoe and others to eliminate the

muddiness. I don't agree that I don't see the clinical picture with the chronic

lyme diagnosis since I have been one with this non-starter since 1997. I've

done my homework and trust it, more than the failing LLDs regarding this dx.

>

> >

> > The antibiotic route has clearly been a joke and everyone, with rare

> exception, I've ever known, research I've done, the chronicly ill

> patients at LL docs who have gone to get treatment at these clinics

> for years, the Bay Area dx lyme folk support groups, personal

> contacts, etc all remain pretty much as symptomatic as the day before

> they ever heard of such a diagnosis. They're still freakin' sick!

>

> Yes this is true of the ones we know but there are many who take the

> antibiotics and get better!

***No. No. No. " Many " doesn't happen with chronic lyme dxs. Prove it. I've

not found ONE here in Bay Area! May be we have the worst strains of lyme here?

Nine years now I still find all the people who got this dx still sick. They've

done plently of abx and the local LLDs still roll in lots of new patients who

they give this dx but after months and longer I find they're still sick

also....I do recall one fibromyalgia guy on this list who got completely better

on the benicar protocol w/low dose abx. He had a lyme dx, so he is the

exception where something worked. But the problem is I found him on another

list, months after his proclaimed cure, still complaining of the same damn

symptoms!

I've met them in passing. I might say I have lyme, someone will say, I had late

stage lyme, I took IV for 3 mos, I'm fine now. There *are* many like that.

***I disagree with the " many " part. Follow up on these folks with a more

rigorous ear and even those that had some bleep or two of improvement relapse,

are still actually sick.

Or even those who were

really really ill, a science journalist I know, took orals for 4 years. She

slowly steadily improved and is working two jobs now--i.e. she's basically well,

and has been off abx for over a year. But it took that long. And she had to do

antimalarials too.

***Follow-up I suggest. It may remain true that she is cured, but this is the

exception I would wager even so.

So there's a variance. You wouldn't know about her, because she

> doesn't have to come on this board, as we do...

>

> >

> >

> >

> > To top it off, our local LL docs, one nationally very famous

> regarded expert, here in the wider Bay Area never admit failure, but

> when you talk to their patients, some still seeing them and many

> having stopped for wanting to be off a fruitless treadmill, there is

> virtually nothing but failure coming from their mouths regarding lyme

> treatment. The issue: It's not the bugs, it's the terrain by far!

>

> I think it's not an either/or . Nature and nurture are so

> complex.

***I'm not saying either or, I'm saying for the chronic lyme dx the jig is up.

Terrain trumps bugs by a mile or further for the completely crumbling hypothesis

behind this dx.

Terrain is a murky concept to some extent.

***Well, I understand what you're saying here. But I suggest it's not so much

the concept that's murky, it just the research and data hasn't been there in

the past to provide tangible evidence for terrain's reign.

***Terrain is ruling the roost and it will be clear the more PWCs do the testing

like for gene variants, organic acids, comprehensive detox and amino acids

profile, etc..

***The PWC mold subset seems to be ahead of others in that they see

susceptibility(an aspect of terrain) as key to their dilemma while avoidance for

them is the first ticket to start coming out of it. Avoidance is comparatively

irrelevant to the subset to which I belong, but terrain, of various sorts no

doubt, is common to us all.

>

> > It's the camels back that needs major addressing, not so much the

> straw that broke it. That back was NOT as healthy as too many people

> assume it was.

> >

> This is true in many cases and with many bugs but I've come to have a

> deep respect for and horror of the cunning and power of borrelia.

***I understand. And I know you understand I think there is a very questionable

assigning of power and cause to something which has not been proven for those dx

with chronic lyme. Horror of symptomatology is of course true.

[Guest guest]

Okay, we have very different viewpoints on this. I understand the

terrain issue, and certainly, toxins, heavy metal poisoning, leached

soils in which fruits and veggies grow, etc, can all make someone

vulnerable to an infection when it comes along.

Nonetheless you must look at the history of infections--epidemics, for

goodness sake. They come and go and wipe out or disable huge #'s of

people while they're at their peak (and the reason they wane is

manifold, one is that a microbe's virulence tends to wane as it moves

through a vector/population, so that it can cohabit with the host and

survive, because killing the host usually doesn't help it spread

effectively; and secondly, it kills off those not genetically fit).

Look at the plague, look at that story of a tribe somewhere in south

America who were exposed to the common cold, a nuisance to all of us,

and many of them died of it. Genetically they had evolved no defenses.

There are folks with genetic twists who never get infected with the

AIDS virus--it can't get a hold into their cells, not because they're

more fit, but because there's a slight different 'glitch' in the way

their receptors function. That's the way of evolution. Infections are

real, and terrain is not the whole story. Sometimes, if you slowly go

downhill over years, maybe so. But then again, that could be the

hallmark of an untreated infection slowly eating away like acid.

I really do think many get well. That's often said on lymenet--most

get better and go away. I've met people who got rid of lyme with just

a few weeks of antibiotics. I've met others who when finally diagnosed

got rid of it with 3-6 months of oral or IV. And then still others,

with coinfections, who got better slowly over the years. You see the

monikers at lymenet mostly change. The sick ones get better. It's only

a very small proportion who can't. I saw my response to amoxicillin in

one week--my lyme sympotms already abated. If I did not have major

fungal issues, because of various reasons, I could take the amoxy

longterm and get well, I " m sure. My strain(s) were very vulnerable to

3 grams of amoxy a day. My neck became more mobile, my buzzing

stopped, within just a few days of taking it. But the fungal problems

preclude it as a realistic therapy.