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Posted

Hi, ,

I can't answer as to the commonality of this problem, but, you

describe me to a T.

I am not bedridden but, I can't eat much of anything without

reacting to it. When I do find a food or supplement I can take I

soon become sensitive to it. I spend a lot of time turning in

circles in the kitchen wondering what I can possibly eat.

If I have any kind of commitment I don't eat the day before,

because I might not be able to get out of the house the next day.

My symptoms can be anything from boating, nausea, feeling sick all

over, fever, heaviness.......

I know a lot of people here have digestive problems and we keep

trying various things to help.

>

> Hi! , the young woman with severe M.E. that I assist, shows

> intolerances to almost everything. Because she is bedridden, she

is

> given a wonderful nutrient-rich drink that she uses for her

> nutrition... it is the type that hospitals give to ill patients who

> can't eat through their mouths. (It contains all the fats,

proteins,

> vitamins, and minerals that she needs. Plus we give her

supplements

> of different things several times a day. Among these Calcium,

> Magnesium, seal oil, cod liver oil, probiotics, etc.)

>

> We have been giving her about 1/4 cup (around half a deciliter) of

> fresh chicken broth five times a day. We have used chicken

> stock(this is the liquid that we get when we boil a whole chicken

for

> several hours in water)... we have tried turkey broth... now we are

> trying cod broth.

>

> For a few weeks one of these soups does OK, but then she developes

a

> semi-intolerance for it... so we try another... and then she

becomes

> intolerant to that... so we go back to the first, etc. At first we

> believed there was something in these soups... some chemical...

> something that her body is reacting to. But now we are thinking

that

> this is just one side effect of crazy serotonin levels and her

brain

> sending the wrong signals to her stomach. That is the only thing

that

> makes sense. She says all of the soups feel like a brick to her

> stomach... all of the blood goes to her stomach as it works SO

hard to

> digest the soup... (but honestly, the soup is mostly water with

very

> little of anything in it at all).

>

> So, my question... Do you know anyone affected by Severe M.E. and

do

> they have these same reactions to every type of food? (nausea,

> stomach over-working to break down the broth, etc) Her cousin who

has

> even worse Severe M.E. vomits every time she receives the hospital

> nutrient pack... her body rejects almost any type of nutrition.

>

> How common is this in Severe M.E. for a person's signals to be so

> wrong that their stomach feels that a common beneficial thing is a

foe?

>

> Thank you so much!

>

> -

>

Posted

Hi ,

Have you ever been checked for leaky gut? This sounds classic to me. It's a

very easy test. You drink a couple of concoctions, collect your urine to find

out how quickly the molecules are escaping you intestines and viola. It's quite

common and would definetly cause your symptoms as the body reconizes these

foreign molecules from your food as invaders and makes antibodies to them.

Edy

marypmichel <marypmichel@...> wrote:

Hi, ,

I can't answer as to the commonality of this problem, but, you

describe me to a T.

I am not bedridden but, I can't eat much of anything without

reacting to it. When I do find a food or supplement I can take I

soon become sensitive to it. I spend a lot of time turning in

circles in the kitchen wondering what I can possibly eat.

If I have any kind of commitment I don't eat the day before,

because I might not be able to get out of the house the next day.

My symptoms can be anything from boating, nausea, feeling sick all

over, fever, heaviness.......

I know a lot of people here have digestive problems and we keep

trying various things to help.

>

> Hi! , the young woman with severe M.E. that I assist, shows

> intolerances to almost everything. Because she is bedridden, she

is

> given a wonderful nutrient-rich drink that she uses for her

> nutrition... it is the type that hospitals give to ill patients who

> can't eat through their mouths. (It contains all the fats,

proteins,

> vitamins, and minerals that she needs. Plus we give her

supplements

> of different things several times a day. Among these Calcium,

> Magnesium, seal oil, cod liver oil, probiotics, etc.)

>

> We have been giving her about 1/4 cup (around half a deciliter) of

> fresh chicken broth five times a day. We have used chicken

> stock(this is the liquid that we get when we boil a whole chicken

for

> several hours in water)... we have tried turkey broth... now we are

> trying cod broth.

>

> For a few weeks one of these soups does OK, but then she developes

a

> semi-intolerance for it... so we try another... and then she

becomes

> intolerant to that... so we go back to the first, etc. At first we

> believed there was something in these soups... some chemical...

> something that her body is reacting to. But now we are thinking

that

> this is just one side effect of crazy serotonin levels and her

brain

> sending the wrong signals to her stomach. That is the only thing

that

> makes sense. She says all of the soups feel like a brick to her

> stomach... all of the blood goes to her stomach as it works SO

hard to

> digest the soup... (but honestly, the soup is mostly water with

very

> little of anything in it at all).

>

> So, my question... Do you know anyone affected by Severe M.E. and

do

> they have these same reactions to every type of food? (nausea,

> stomach over-working to break down the broth, etc) Her cousin who

has

> even worse Severe M.E. vomits every time she receives the hospital

> nutrient pack... her body rejects almost any type of nutrition.

>

> How common is this in Severe M.E. for a person's signals to be so

> wrong that their stomach feels that a common beneficial thing is a

foe?

>

> Thank you so much!

>

> -

>

Posted

,

As I just wrote. Have you had her have a leaky gut test. This will tell you

why this is happening if she has it.

<kelly@...> wrote:

Hi! , the young woman with severe M.E. that I assist, shows

intolerances to almost everything. Because she is bedridden, she is

given a wonderful nutrient-rich drink that she uses for her

nutrition... it is the type that hospitals give to ill patients who

can't eat through their mouths. (It contains all the fats, proteins,

vitamins, and minerals that she needs. Plus we give her supplements

of different things several times a day. Among these Calcium,

Magnesium, seal oil, cod liver oil, probiotics, etc.)

We have been giving her about 1/4 cup (around half a deciliter) of

fresh chicken broth five times a day. We have used chicken

stock(this is the liquid that we get when we boil a whole chicken for

several hours in water)... we have tried turkey broth... now we are

trying cod broth.

For a few weeks one of these soups does OK, but then she developes a

semi-intolerance for it... so we try another... and then she becomes

intolerant to that... so we go back to the first, etc. At first we

believed there was something in these soups... some chemical...

something that her body is reacting to. But now we are thinking that

this is just one side effect of crazy serotonin levels and her brain

sending the wrong signals to her stomach. That is the only thing that

makes sense. She says all of the soups feel like a brick to her

stomach... all of the blood goes to her stomach as it works SO hard to

digest the soup... (but honestly, the soup is mostly water with very

little of anything in it at all).

So, my question... Do you know anyone affected by Severe M.E. and do

they have these same reactions to every type of food? (nausea,

stomach over-working to break down the broth, etc) Her cousin who has

even worse Severe M.E. vomits every time she receives the hospital

nutrient pack... her body rejects almost any type of nutrition.

How common is this in Severe M.E. for a person's signals to be so

wrong that their stomach feels that a common beneficial thing is a foe?

Thank you so much!

-

Posted

Hi ,

I'm sorry to read of how severely this young lady is affected and her

sister too.

I've no idea how common or not such severe food intolerances are

though food and chemical sensitivities are common in ME/CFS but she

sounds to be very severely affected.

Just a few thoughts.

1. She really sounds as if she needs the help of a specialist doctor

like Dr Rea I think he is called in Texas who has an environmental

unit for helping people with such very severe allergies/sensitivities

and who would have the knowledge required to help someone in such a

state.or perhaps he could give you the name of a doctor who works in

this field in your area.

2. I found that my food sensitivities/digestion improved markedly

after it was found I had a parasitic infection, over and above the ME.

I had blastocystis hominis, other infections people come up with are

things like giardia or candida etc. Perhaps that might be a useful

area to persue with a knowledgeable doctor.

3. I wonder if it wouldn't be better to rotate the foods you are

giving her. If you keep on eating the same food over and over (eg the

broth) then you will or can become sensitive to it. If you rotate each

food only eating once every 3-4 days that reduces the risk but perhaps

there aren't enough foods she can eat to be able to do this?

4. Have you looked into whether she could also have any chemical

sensitivities? Very often people with food sensitivites will also have

problems with chemicals?Things like perfumes, household cleaners,

washing powders, toiletries, gas heating/cooking, car fumes ect etc

I just think it sounds as if she really needs the help and soon of a

doctor like Dr Rea who would have the knowledge to deal with such a

case. Ordinary doctors won't have a clue about this sort of thing.

Whatever, I hope she can find something to improve her health.

Best wishes,

Sheila

>

> Hi! , the young woman with severe M.E. that I assist, shows

> intolerances to almost everything. Because she is bedridden, she is

> given a wonderful nutrient-rich drink that she uses for her

> nutrition... it is the type that hospitals give to ill patients who

> can't eat through their mouths. (It contains all the fats, proteins,

> vitamins, and minerals that she needs. Plus we give her supplements

> of different things several times a day. Among these Calcium,

> Magnesium, seal oil, cod liver oil, probiotics, etc.)

>

> We have been giving her about 1/4 cup (around half a deciliter) of

> fresh chicken broth five times a day. We have used chicken

> stock(this is the liquid that we get when we boil a whole chicken for

> several hours in water)... we have tried turkey broth... now we are

> trying cod broth.

>

> For a few weeks one of these soups does OK, but then she developes a

> semi-intolerance for it... so we try another... and then she becomes

> intolerant to that... so we go back to the first, etc. At first we

> believed there was something in these soups... some chemical...

> something that her body is reacting to. But now we are thinking that

> this is just one side effect of crazy serotonin levels and her brain

> sending the wrong signals to her stomach. That is the only thing that

> makes sense. She says all of the soups feel like a brick to her

> stomach... all of the blood goes to her stomach as it works SO hard to

> digest the soup... (but honestly, the soup is mostly water with very

> little of anything in it at all).

>

> So, my question... Do you know anyone affected by Severe M.E. and do

> they have these same reactions to every type of food? (nausea,

> stomach over-working to break down the broth, etc) Her cousin who has

> even worse Severe M.E. vomits every time she receives the hospital

> nutrient pack... her body rejects almost any type of nutrition.

>

> How common is this in Severe M.E. for a person's signals to be so

> wrong that their stomach feels that a common beneficial thing is a foe?

>

> Thank you so much!

>

> -

>

Posted

Hi ,

People with this problem generally have a viscous cycle which conists of most,

or all, of the following factors:

-Gut infections (yeast, bacteria, parasites)

-Insufficient healthy flora

-Leaky gut/gut mucosa inflammation

-Low or zero stomach acid

-Low pancreatic enzyme ouput

Blake

Posted

I can't answer your question, but I have a suggestion, based on my own

difficulties in the past, post-surgery. My stomach was as good as paralyzed. I

din't vomit, but the food would not move.

There are one or more products that are not only complete liquid nutrition, but

are also pre-digested. That is, broken down into the basic components the body

can absorb with out any action on the part of the stomach, etc. (It was

originally developed for the astronauts, because it results in no solid wastes

whatsoever.)

I was on this stuff for several weeks and it literally saved my life. I don't

remember the name. And most docs do not know of it's existence. A

gastroenterologist might. I needed to get the name once for a friend, and I got

a pharmacist to research it and he did find it, but there is more than one now.

It might be worth a try.

Adrienne

Food Intolerance with Severe M.E.

Hi! , the young woman with severe M.E. that I assist, shows

intolerances to almost everything. Because she is bedridden, she is

given a wonderful nutrient-rich drink that she uses for her

nutrition... it is the type that hospitals give to ill patients who

can't eat through their mouths. (It contains all the fats, proteins,

vitamins, and minerals that she needs. Plus we give her supplements

of different things several times a day. Among these Calcium,

Magnesium, seal oil, cod liver oil, probiotics, etc.)

We have been giving her about 1/4 cup (around half a deciliter) of

fresh chicken broth five times a day. We have used chicken

stock(this is the liquid that we get when we boil a whole chicken for

several hours in water)... we have tried turkey broth... now we are

trying cod broth.

For a few weeks one of these soups does OK, but then she developes a

semi-intolerance for it... so we try another... and then she becomes

intolerant to that... so we go back to the first, etc. At first we

believed there was something in these soups... some chemical...

something that her body is reacting to. But now we are thinking that

this is just one side effect of crazy serotonin levels and her brain

sending the wrong signals to her stomach. That is the only thing that

makes sense. She says all of the soups feel like a brick to her

stomach... all of the blood goes to her stomach as it works SO hard to

digest the soup... (but honestly, the soup is mostly water with very

little of anything in it at all).

So, my question... Do you know anyone affected by Severe M.E. and do

they have these same reactions to every type of food? (nausea,

stomach over-working to break down the broth, etc) Her cousin who has

even worse Severe M.E. vomits every time she receives the hospital

nutrient pack... her body rejects almost any type of nutrition.

How common is this in Severe M.E. for a person's signals to be so

wrong that their stomach feels that a common beneficial thing is a foe?

Thank you so much!

-

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

Posted

Dear ,

I have similar reactions in my gut. The food or liquid just sits there and

indeed feels like a

brick. If I drank a quantity of broth it would be the same uncomfortable

sensation as a more

substantial meal.

What I don't understand is why the broth is OK for a few weeks and then causes

the response!

I can't see how theories such as a leaky gut would cause this, if OK for a

while.

Like many CFS and ME things it may be a combination of factors.

In my case taking Betaine HCL with meals helped the " sitting like a brick "

sensation.

If she has an actual food allergies, this may explain why the broth is OK for a

few weeks and then

the intolerance starts. In the early years of the disease (<5), the foods I ate

the most of were

the ones I became intolerant to. This pushed me into a problem of finding my

non-problem foods

shrinking. I started rotating foods and this improved.

However, it's a hard problem to get out of and I'm lucky that for me things

improved. Rotation and

EPD injections helped me.

The other things that helps is massaging my stomach to get the food moving,

however, I am usually

too weak to do this as much as I need. A shiatsu practitioner may be able to do

this. I found a

good one in the end but it is too expensive for me to do this now.

Could the family consult with someone like Professor Brostoff in London, (he is

good with

allergies and M.E? If the family has the money they could send someone to see

him (on your clients

behalf ) or correspond with him.

With regards to your serotonin theories, the brain doesn't need to send

serotonin to the brain as

it manufacturers it also. I think you are on to something there through.

Is your client taking anti-depressants or anti-biotics as these bothed messed

with my stomach in a

major way?

Kindest regards,

Annette

(in London)

___________________________________________________________

Now you can scan emails quickly with a reading pane. Get the new .

http://uk.docs./nowyoucan.html

Posted

Hi ,

For what it's worth I've got moderate ME/CFS (I live a lot of my life in

an armchair with my feet up) with major food intolerance issues. I can't

have soup of any kind because it is too rich in amines and glutamates. Both

of these increase with protein age (since kill) and processing. I react with

headaches, nausea and sleepiness and feel rotten. I don't tolerate grains or

pulses either.

I always thought that I didn't tolerate cabbage but recently discovered

that when cabbage is cooked that the natural glutamates become unbound and

that I CAN cope with coleslaw and I am enjoying a change from iceberg

lettuce with celery. Presumably, my digestive system copes with the slower

processing of the cabbage in my gut.

I also do badly with blended vegetables: headaches and abdominal cramps.

I can't help you with a liquid diet but things that work for me:

(1) really small serves of protein (fresh as possible plainly cooked

chemical free chicken without the skin or fish) or I react. Steaming is good

as higher and longer temperature cooking gives me more symptoms. I avoid

protein before driving (I can drive short distances if I have to as long as

I avoid the protein that causes me to lose alertness).

(2) well peeled ordinary potatoes cooked in as many ways as I can think of.

(3) coleslaw with little bits of carrot, celery & capsicum.

(4) green beans.

(5) celery.

(6) I tolerate the equivalent of 2 serves of milk a day but I like some milk

in my decaffeinated coffee and this spreads out the milk dosage. I also cope

with a small treat of the plainest vanilla icecream (made from old fashioned

ingredients) I can find. Any more and I get itchy. I have the icecream treat

as a snack and not with a protein meal that is really a snack too.

(7) I seem to do better with a weak cup of coffee with caffeine when I am

eating out. Perhaps I get a bit more circulation to the liver with the

stimulation from the caffeine? I can only do this this very occasionally or

the reactions are worse.

(8) I do better with sodium sulphate and magnesium sulphate so I wonder what

is happening to phase 2 liver detoxification.

I do very badly on the liquid diets even the ones that are supposed to

be low allergy. It's probably the amine and glutamate problem. I react to

anything fermented and even to yoghurt or the various capsules of the

different bacilli strains used to make it.

I am hopeless on fruit and finding medications I tolerate is always a

problem.

I hope that this gives you some ideas.

All the best,

Judy

On 19/10/06 7:28 PM, " " <kelly@...> wrote:

> Hi! , the young woman with severe M.E. that I assist, shows

> intolerances to almost everything. Because she is bedridden, she is

> given a wonderful nutrient-rich drink that she uses for her

> nutrition... it is the type that hospitals give to ill patients who

> can't eat through their mouths. (It contains all the fats, proteins,

> vitamins, and minerals that she needs. Plus we give her supplements

> of different things several times a day. Among these Calcium,

> Magnesium, seal oil, cod liver oil, probiotics, etc.)

>

> We have been giving her about 1/4 cup (around half a deciliter) of

> fresh chicken broth five times a day. We have used chicken

> stock(this is the liquid that we get when we boil a whole chicken for

> several hours in water)... we have tried turkey broth... now we are

> trying cod broth.

>

> snipped

Posted

Dear and Annette,

All amines are not equal (I think I mean that the liver detoxification

pathways may be different) and it takes time to build up a reaction (yes,

even weeks). It also takes me a long time to get over such a reaction.

I can get over a salicylate reaction much faster than an amine or

glutamate reaction.

All the best,

Judy

On 20/10/06 1:57 AM, " annette barclay " <annettebarc@...> wrote:

> Dear ,

>

> I have similar reactions in my gut. The food or liquid just sits there and

> indeed feels like a

> brick. If I drank a quantity of broth it would be the same uncomfortable

> sensation as a more

> substantial meal.

>

> What I don't understand is why the broth is OK for a few weeks and then causes

> the response!

>

>

Posted

Don't know if this is a repeat but FYI: http://tinyurl.com/y8pr5u

" Bell's Palsy of the Gut " and

Other GI Manifestations of

Lyme and Associated Diseases

PRACTICAL GASTROENTEROLOGY

April 2006

by Virginia T. Sherr, MD

Bell's palsy signifies paralysis of facial muscles related to

inflammation of the associated seventh Cranial Nerve. Physicians may

not realize that this syndrome is caused by the spirochetal agent of

Lyme disease until proven otherwise. Whether it is a full or

hemifacial paralysis, Bell's palsy is cosmetically disfiguring when

fully expressed. Sudden loss of normal facial expression terrifies

patients who naturally fear they are having a stroke. When a smile is

asked for, normal countenances warp into bizarre grimaces. The amount

of tooth area exposed in this attempt to smile helps doctors evaluate

the degree of paralysis and its change over time (Figure 1). In every

case of Bell's, doctors need to carefully investigate by history,

physical, and laboratory work every shred of evidence that might

suggest the presence of cryptic tertiary Lyme, a serious multisystem,

gut and neuro-brain infection even though about half of fully

diagnosed patients have no evidence whatsoever of having had a tick-bite.

Gastrointestinal Lyme disease may cause gut paralysis and a wide range

of diverse GI symptoms with the underlying etiology likewise missed by

physicians. Borrelia burgdorferi, the microbial agent often behind

unexplained GI symptoms†" along with numerous other pathogens also

contained in tick saliva†" influences health and vitality of the

gastrointestinal tract from oral cavity to anus. Disruptions caused by

GI borreliosis (Lyme) may include, amongst many others, distortions of

taste, failure of other neural functions that supply the entire GI

tract†" paralysis or partial paralysis of the tongue, gag reflex,

esophagus, stomach and nearby organs, small and/or large intestines

( " ileus " ), bowel pseudo-obstruction, intestinal spasms, excitability

of gut muscles, inflammation of lumen lining tissues, spirochetal

hepatitis, possibly cholecystitis, dysbiosis, jejunal or ileal

incompetence with resultant small intestine bacterial overgrowth

(SIBO), megacolon, encopresis and rectal muscle cramping (proctalgia

fugax).

In cerebral hypothalamic and pituitary centers, usual sites of

borrelial disruptions of the brain's normal hormonal cascades, there

are strong influences on human attitudes, ideation, and behavior

relating to gastronomic issues. Newly discovered Lymeendangered

cerebral hormones and renegade cytokines regulate brain-gut

interactions thus initiating behavioral tendencies such as anorexia or

a failure of satiety with resultant obesity.

Ticks and other vectors of Lyme disease attract their own infections

from many microbes, some known and some unknown (viruses, amoebas,

bacteria, and possibly parasitic filaria), which they then also can

pass on to humans. The GI tract is especially vulnerable to

machinations of such co-infections as bartonellosis, mycoplasmosis,

human anaplasmosis (HA), and human monocytic ehrlichiosis (HME).

Syndromes exactly similar to Irritable Bowel Syndrome (IBS), Crohn's

Disease, and cholecystitis, for example, may not have readily

suggested a borrelial etiology to the diagnostician but Lyme

increasingly is known to be a potential contributor to each.

All known Lyme-gut syndromes are treated by combining several

effective antimicrobials (including use of azole medications with

specific antibiotics) with agents that boost gut lining repairs and

overall immunity enhancement. Azole medications are borreliacidal

(against the anti-Bb spirochetal cyst form) medications such as

metronidazole (Flagyl). Needed GI healing agents may include gut

stimulants or relaxants, Ph agents, bile salts, nutriceuticals,

immunity-enhancers, neurotoxin absorbents, and sterilizers of

gut-specific microbes.

Parallelism between Lyme borreliosis-caused paresis of facial muscles

supplied by Cranial Nerve VII and Lyme-caused gastrointestinal

paralyses suggested a pseudonym to the author†" Bell's palsy of the

Gut†" despite the fact that these syndromes are related to different

types of neural fibers and only occasionally occur together. Since

similar injury to all sites may be etiologically related, however,

otherwise unexplained gastrointestinal symptoms should be considered

as possibly related to Lyme borreliosis and/or its co-infections until

proven otherwise.

INTRODUCTION

Until proven otherwise, a patient's unexplained facial paralysis is

caused by the tick-borne spirochetes of Lyme disease (LYD) (1). The

widely endemic bacteria are easily capable of inducing distal

inflammation of the Seventh Cranial (Facial) Nerve (2). " Considering

the incidence of Bell's palsy in Lyme, it is improper to treat it as

viral in origin without a work-up for Lyme disease " (3). In an early

study with nearly 1000 LYD cases studied, Bell's palsy occurred in at

least 10% of validated cases (4). The frequency of Lyme's Bell's palsy

etiology is unfamiliar to many physicians. Likewise many physicians

are unfamiliar with the spirochetal cause of paralyses of muscles that

facilitate normal gastrointestinal transit. Yet, these vital muscles

also may be greatly compromised by the same offending neurotropic

spirochete, Borrelia burgdorferi (Bb) in patients who are totally

unaware of having Lyme disease. Their physicians are often surprised

to learn that persistent Lyme disease is outstandingly a disease of

the brain as well as involving one or all components and sub-systems

of the entire nervous system (5). It is not yet widely understood by

clinicians that at least 40% or more of Lyme-infected patients have

major, handicapping, neurological manifestations (6,7) with the

likelihood that 100% have some brain involvement. It remains to be

clarified which Bb neuritides are involved in specific GI sequelae of

the infection or if inflamed nerves are, indeed uniformly at fault.

" The vagi (10th Cranial Nerves) are major suppliers of the gut's

external nervous system and being very long and complex, are

vulnerable to neuropathies such as Lyme disease or diabetes which can

cause them serious damage. " (Personal communication from Neurologist,

Rhee, M.D., F.A.A.N., Neptune, NJ)

" Vagus nerve paralyses are more commonly diagnosed when caused by

Herpes (varicilla) zoster or Herpes simplex viruses wherein most

patients I have seen are nauseated and have no appetite. I have not

observed paralytic ileus in these cases. Should vagal paralysis occur

in a Lyme patient, I think the patient would complain of hoarseness

and dysphagia. " (Personal communication from Dr. Hidecki Nakagawa,

Japan) Indeed, both of these problems are common symptoms of neuro-Lyme.

" The autonomic nervous system supplies the gut . . . sympathetic

fibers inhibiting peristalsis and secretion and parasympathetic fibers

increasing them . . . Functions of the sympathetic nerves include

vasomotor, motor to the sphincters, inhibition of peristalsis, and

transport of sensory fibers from all of the abdominal viscera. . . .

Functions of the parasympathetic nerves comprise motor and

secretomotor to the gut and glands " (8).

Borreliosis-caused, gastrointestinal tract paralysis and related

abnormalities can occur anywhere along the entire length of the tract

(9,10)†" involving, for example, functionality of taste buds (11,12),

muscular strength of the tongue, gag reflex, ability to swallow,

gastroparesis, peristaltic retardation (or excitation) related to

small bowel competency, dysbiosis, total arrest of peristalsis

( " ileus " ), pseudo-obstruction (sometimes associated with Bell's palsy)

(13), colon dysfunctions, encopresis, proctalgia fugax and the final

act of defecation. " In 5%†" 23% of patients with early Lyme borreliosis,

there can be gastrointestinal symptoms such as anorexia, nausea,

vomiting, severe abdominal pain, hepatitis, hepatomegaly and

splenomegaly. Diarrhea occurs but is seen in only 2% of cases " (14).

Regardless of the site, spirochetes' disturbing symptoms may come and

go spontaneously, often temporarily resolving in a matter of hours to

days, although resolution does not imply cure. As with Bell's palsy of

the face, these gastrointestinal conditions may endure or only

partially remit (15).

Similarities between Bb-caused paralyses of muscles supplied by the

Facial Nerve and Lyme-caused GI neurogenic paralyses suggested a

pseudonym to this writer†" Bell's palsy of the gut†" despite the fact that

the two manifestations of the infection may not be synchronous. Yet,

they are etiologically related, which suggests need for a high index

of suspicion regarding presence of borrelial disease in all perplexing

gastrointestinal syndromes.

LYME AND ITS POTENT MICROBIAL CO-INFECTIONS AS RELATED TO GEOGRAPHIC

FACTORS

Endemic areas for tick-borne diseases include the entire Eastern and

Western coasts of North America with their internally contiguous

states as well as Midwestern states that support migratory bird

North-South flyways (16). Infected deer ticks (Ixodes scapularis and

similar hard-bodied ticks), vectors of many diseases including the

ones discussed below, are thus most widely distributed by birds,

geographically. There are few places in the United States that are

totally safe from the risk of microbes thus ferried. In 2002, the CDC

estimated the existence of nearly one-quarter million new cases in

USA's rapidly expanding LYD epidemic.

Very common co-infections from infected Ixodes sp. ticks (Figure 2)

include the ehrlichioses†" Human Granulocytic Ehrlichiosis, which

recently was renamed Human Anaplasmosis (HA) and Human Monocytic

Ehrlichiosis (HME). Human babesiosis, a tick-borne, one-celled

parasite of erythrocytes, is widely misdiagnosed in its endemic,

chronic form (17,18). A Bartonella-like bacteria, mycoplasma spp, and

other viral and opportunistic infectors are now known to be tick-borne

(19), existing in the full territorial range of I. scapularis and

other ticks (20†" 22). Resultant illnesses include two that have been

found to be the most common tick-borne invaders of children's

gastrointestinal tracts†" the combination of bartonellosis and Lyme

borreliosis gut infections (23).

As with the spirochetes of Lyme, Bartonella is an increasingly common

(perhaps the most common) tick infector (21). " PCR analysis of Ixodes

scapularis ticks collected in New Jersey identified infections with

Borrelia burgdorferi (33.6%), Babesia microti (8.4%), Anaplasma

phagocytophila (1.9%), and Bartonella spp. (34.5%). The I. Scapularis

tick (Figure 3) is a potential pathogen vector that can cause

coinfection and contribute to the variety of clinical responses noted

in some tick-borne disease patients " (24). As more experience has been

gained with Bartonella henselae and its related species, bartonellosis

has been found capable of causing severe gastrointestinal pain and

malfunction as well as specific skin eruptions. Both of these sites

involve vasculopathy†" enteric and dermal as well. Scar-like stripes on

the patient's torso are telltale " stretch marks " or " scratch marks " of

the disease, easily notable. This external and visible sign (the

seemingly mysterious but diagnostically pathognomonic striae) may make

the GI bartonellosis diagnosis less complicated for

gastroenterologists and other specialists (25).

Quite surprising to many physicians, bartonellosis can cause major

central nervous system damage, similar in some aspects to the

aforementioned Lyme neuroborreliosis. Lyme and bartonellosis symptoms

may include encephalitis signified by headaches, major memory loss,

rages, seizures, and coma, as well as inflammation of the heart,

abdominal pain, bone lesions, and loss of vision. Until recent years,

Bartonella, at onset of infection an endothelial and subsequent red

blood cells infector, was considered to cause a relatively benign and

common disease otherwise known as cat scratch disease (26†" 28). Now

that ticks have become significant transmitters of Bartonella

infections into humans, this vectoring appears to amplify victims'

general Lyme symptoms (26), and quite likely amplifies GI tract lining

symptoms as well.

OFTEN UNSUSPECTED PRESENTATIONS OF GI TRACT LYME†" DIAGNOSTIC USEFULNESS

OF PCR TESTS ON SPECIMENS HARVESTED FROM ENDOSCOPY/COLONOSCOPY

BIOPSIES (WITH ILLUSTRATIVE CASES)

One of the blessings of modern medical investigation is a positive PCR

(A direct test†" polymerase chain reaction†" capable of pinpointing an

offending microbe's DNA). This test can be performed on specimens from

the patient's blood, serum, plasma, CSF, urine, mothers' milk, and all

biopsy tissues. PCRs can play a vital role in diagnosing tick-borne

diseases especially those affecting any organs or associated tissues.

" Lyme disease is usually diagnosed and treated based on clinical

manifestations. However, laboratory testing is useful for patients

with confusing presentations and for validation of disease in clinical

studies " (29).

DNA tests are especially handy because they can be utilized by way of

biopsies harvested from inside the gut during otherwise routine

colonoscopies and endoscopies in cases where the diagnosis is

uncertain. PCR's are highly specific although they are less than

ideally sensitive so that a positive test is a reliable indicator of

Bb infection while a negative test simply does not exclude Lyme and

does not indicate a lack of infection (30).

An illustrative case history is that of " Mr. F, " a mature man thought

to have been mentally retarded most of his life. His father had

ascribed his youth's sudden headaches, stiff neck, and cognitive

losses to the will of God. No further evaluation or treatment was

allowed. They lived in endemic tick territory at the time. Decades

later the patient realized that his symptoms back then followed a

series of bites by minute ticks). Now an adult, the patient's chronic

" ulcerative colitis " and depression kept him from his job as a school

janitor. (Antidepressant medication had mostly just helped his

anxiety) When a colonoscopy was needed, a generous gastroenterologist

biopsied Mr. F's luminal tissues, which the referring doctor then sent

for testing to a reference lab specializing in tick-borne diseases.

Specimen analysis returned as PCR positive for etiologies of 3

diseases that infected his colon: Borrelia burgdorferi (Lyme disease),

Mycoplasma fermentans (suspected of causing GI injury via

proinflammatory cytokines) (25), and B. henselae (bartonel

bartonellosis). Each disease required its own unique treatment, all of

which were successful and the patient's GI symptoms resolved. Mr. F's

depression also cleared and in its place there was a kind of chronic

good cheer, off and on resembling mild hypomania.

The case of " Mrs. M " illustrates another important method of detecting

the presence of an active Lyme infection as well as uncovering a

possible contributing cause of cholecystitis. Gall bladder (GB) tissue

was tested for Bb spirochetal DNA following a cholecystectomy on this

seronegative patient: A middle-aged woman with a known diagnosis of

pre-existing, asymptomatic gallstones, experienced episodes of

allergies, severe headaches and extreme chronic fatigue. She was

treated for 2 tick-borne diseases†" - LYD and babesiosis, having had

symptoms of both and a positive PCR blood test for babesiosis. The LYD

was treated with oral antibiotics and then 3 months of IV ceftriaxone

(Rocephin) following which she showed improvement.

About a year later, Mrs. M, again fatigued, developed right shoulder

blade pain and afebrile nausea after eating greasy foods. Surgery to

remove her diseased gallbladder was scheduled. Treatment (doxycycline)

for suspected but unproven persistent Lyme was begun. The family

physician asked that biopsy specimens of the removed gall bladder be

tested in a reference laboratory specializing in tick-borne diseases

(31). The resultant PCR test on her gall bladder tissue was positive

for DNA of the causative Bb spirochete of Lyme disease. This PCR

biopsy confirmation of a seronegative patient's Lyme diagnosis

illustrates that, while Western Blot and PCR blood sample testing,

especially for active late stage LYD, may not show a positive antibody

response, a tissue PCR analysis may confirm the diagnosis, even when

the patient has previously been treated. PCR's done on blood are less

satisfactory since Bb prefers an in-tissue environment. Treatment of

Lyme disease by IV Rocephin can lead to gall bladder sludging. In this

case the GB stones were considered to have predated the IV treatment.

Of interest, a similar spirochetal disease (leptospirosis) has been

reported as simulating symptoms of cholecystitis (32). This may be the

first confirmation of a diagnosis of Lyme disease performed on GB

tissue to be published†" its write-up has been submitted for

publication. (Case and personal correspondence from Sabra Bellovin,

M.D., Portsmouth, VA)

In another instance, " Mrs. E " was evaluated in a psychiatrist's office

for severe depression, anxiety, and fatigue some months following

successful removal of a colonic polyp. She mentioned that she had been

experiencing chronic, depleting, diarrhea and severe insomnia. Biopsy

tissue was then obtained from a repeat colonoscopy by a cooperating

gastroenterologist. The specimen was PCR positive for an unspecified

Mycoplasma. M. Pneumoniae is a known gut epithelial lining pathogen

(33) and M. fermentans has been found in inflamed gastro-enteric

linings (19). Both potentially pathogenic mycoplasmas have been

documented as carried by ticks. In addition, Mrs. E's blood tests

revealed the presence of high antibody titers for ehrlichiosis (Human

Anaplasmosis†" HA) as well as positive Western Blot (WB) tests for Lyme

disease, indicating active cases of both when tested in a related

specialty laboratory (34). Interestingly, Mrs. E's family physician in

Pennsylvania was willing to treat the ehrlichiosis but unlike some

more southerly PCP's (35) she thought Lyme was confined to New England

and was unwilling to treat her patient's borreliosis.

Treatment of active Lyme disease is often denied to very sick patients

with or without the presence of positive test findings. Serologic

testing for Lyme disease as routinely performed by local laboratories

is well known for insensitivity. The CDC surveillance case definition

excludes, for example, as many as 78% for IgG of known positive cases

(36,37). More modern guidelines are currently available for diagnosis

and treatment of tick-borne diseases (38,39).

Because the recommended first-use enzyme-linked immunosorbent assay

(ELISA) test tends to miss at least 50 % of authentically positive

Lyme cases, it is less likely to be relied on (29,40). ELISA tests

were not performed in any of the cases presented here.

LYME-ASSOCIATED MOTILITY VARIATIONS AND OTHER BB RELATED GUT PROBLEMS

A suddenly spastic or immobile esophagus or similar paralysis of the

stomach muscles may represent esophageal and/or gastric paresis or

spasm from Lyme neuropathies (5). Infection influencing the vagus

nerves has been documented to cause paralysis in other diseases (8).

Additional Bb-related symptoms may manifest as gastroesophageal reflux

disease (GERD), early or absent satiety, GI bloating, nausea,

vomiting, and atypical colitis wherein the pANCA test may be helpful.

If Crohn's and colitis are considerations, a Prometheus first step may

help to support this diagnosis; however tissue biopsy is necessary to

confirm the diagnosis. (Personal communication from D. Fried,

MD, FAAP, Colt's Neck, NJ)

As noted, neuropathies can result from the immune (cytokine) system

over-activation often seen in chronic Lyme cases. This may lead to

prolonged inflammation with resultant damage to the enteric nervous

system and/or the autonomic nervous system supplying the gut (5). In

addition, possible spirochetal paralysis of the vagal nerve(s) may

cause temporary or long-lasting disruption of normal small intestinal

mobility, and that, in turn, may lead to Small Bowel (or Intestinal)

Bacterial Overgrowth (SBBO or SIBO) (41). SIBO can be a serious and

difficult-to-eradicate infection. The colon microbes involved usually

have migrated backwards to small bowel areas from their original site

of benign bacterial growth following loss of competent peristaltic

rhythm in a now partially compromised small bowel. This overgrowth of

upwardly mobile but misplaced bacteria may greatly interfere with the

normal absorption of nutrients from the small intestines causing

dysbiosis and various forms of malnutrition among other mischief.

Bacterial overgrowth in the small gut can result in remarkable,

intermittent, immense, abdominal bloating/distention with or without

eructation or flatulence (42). Such disruption may occur despite the

fact that small bowel muscles have their own enteric enervation and

could function independently to some degree. In many cases, the

diagnosis of SIBO is verifiable by the Hydrogen-Lactulose Breath test,

which can reveal excess hydrogen production from the relocated colon

bacteria. Related test kits are offered to outpatients upon

physicians' requisitions by Genova (aka Great Smokies) (43) and

Doctor's Data (44) Laboratories, thus allowing the unassisted patient

to complete the test at home and mail it back to the lab.

Another borrelial cause of massive increases in abdominal girth

associated with " gasless " bloating may cause diagnostic confusion.

Unrelated to gut symptoms from Lyme's disruption of the body's

internal " wiring, " Bb-inflicted polyradiculopathies of T7- 12 (nerve

root inflammations) may result in paralysis of external abdominal

muscles such as the rectus abdominus. This in turn can also lead to

the appearance, not the reality, of extensive bloating. No exercise

" crunches " will alleviate this distention even for a previously

well-toned individual. Antibiotic treatment for borreliosis may

resolve this symptom (45, 46).

A diagnostic tip-off to the presence of LYD (and/or bartonellosis) may

be a concomitant hypersensitivity of the chest or waist area skin in

combination with distended belly from weakened abdominal wall muscles

(47). One may hear from a child with unrecognized tick-borne disease,

" I can't stand anything touching the front of me. " Or, " My clothes

have to be real tight " or " I will wear only these (very loose)

clothes. " Parents of children with Lyme disease are often bewildered

by apparent compulsions such children may develop while trying to get

dressed in the morning. Catching the school bus on time can result in

chaos as the harried parent attempts to ready a child when the child

is not known to be Lyme- or bartonellacompromised.

Adynamic or paralytic ileus, a non-obstructive motility failure

(suddenly " silent " intestines), may occur as a result of

neuroborreliosis on an intermittent basis, with resultant abdominal

distention. As mentioned, these functional lapses and

pseudo-obstructions from faulty gut motility may be due to direct

spirochetal or other microbial invasion with resultant tissue

inflammation, or to noxious influences of cytokine (immune system)

reactions, or to microbeproduced neurotoxins that can affect Central,

Somatic, Autonomic (parasympathetic or sympathetic), and Enteric

nervous systems that supply the GI tract.

In children and in adults who unknowingly have been inoculated with Bb

spirochetes, etc. from ticks or from bites of other less common Lyme

disease vectors such as horseflies, deer flies, or even mosquitoes

(48), the resultant altered gastrointestinal motility symptoms may be

mild to life-threatening. (Ehrlichiosis has a 5% mortality rate in

children.) Students are frequently reported to the office as having

persistent stomach pain ( " belly aches " ) (49), failure to thrive,

reluctance to go to school (their behavior often incorrectly labeled

psychosomatic, attention-getting or amotivational), or as adults,

patients may be fearful of going out to eat or to work due to an

apparent " Irritable Bowel Syndrome. " These latter borreliosis symptoms

are a result of visceral hypermotility instead of paralysis. In

addition, the patient may have bloody diarrhea reminiscent of Crohn's

disease, or of colitis (50). As in the case of H. pylori's discovery

as a cause of gastric ulcers, suspicion amongst researchers is growing

in regard to " stress " as the cause of IBS. And, Crohn's Disease is now

considered etiologically related to a pre-existing (unspecified)

gastroenteritis (51). Constipation of an unusual type can occur in a

LYD patient who is not prone to having sluggish bowel movements. The

stool can suddenly become puttylike, unresponsive to usual laxative

treatments. Even massive efforts to relieve this obstipation using all

vigorous conventional methods may not suffice. In addition, many

patients with gastrointestinal Lyme disease develop symptoms

reminiscent of Sprue/celiac disease and/or lactose intolerance all of

which may improve somewhat when treatment for the underlying

infection( s) is successfully concluded.

THE MOLECULAR BRAIN AS A GUT-INFLUENCING ORGAN

Another site of Bb spirochete-caused neuron damage that likely affects

the GI tract is the human brain†" especially its Lyme-injured

hypothalamic and brain stem melanocortin circuits. " Melanocortins are

small protein molecules that carry messages between nerve cells in the

brain. They are involved in regulating a variety of complex behaviors,

including social interactions, stress responses and†" most importantly

in this context†" food intake. So it is easy to see how interference

with them could cause anorexia and bulimia . . . Anorexia and bulimia

may be autoimmune diseases†" and so may several other psychiatric

illnesses " (52). This passage refers to the work of scientists from

the Karolinska Institute in Stockholm, Sweden, who have been looking

at possible connections between different gut bacteria and

autoantibodies against melanocortins to see if they can determine

which bacteria might be responsible for a variety of eating disorders.

They are finding that the level of autoantibodies to melanocortins is

positively correlated with anorexia, but inversely correlated with

bulimia (53). When melanocortins are pathologically over or

under-activated, either stimulation of hunger or of food avoidance may

result. The former leads to hyperalimentation and obesity (54). The

latter leads in some cases to anorexia nervosa and other health

problems. Fallon, MD, and other psychiatrists have long noted

that when their neuro-Lyme patients are treated with antibiotics for

the underlying chronic Bb infection, there is significant improvement

in eating disorder symptoms (55). Bell's 7th and the vagus' (10th)

Cranial Nerve pathologies, brain molecular distortions,

gastrointestinal disruptions, and human behavioral idiosyncrasies are

all perceived of as interrelated.

ADDITIONAL DIAGNOSTIC HINTS

Patients with a Lyme disease-related facial paralysis may not have

positive antibody laboratory tests for borreliosis as is often also

true of those with gastrointestinal neuroborreliosis. Despite those

facts, it is imperative that the multi-organ infecting microbes

associated with such dysfunctions be suspected and treated if they are

likely to be present†" but the prescription of immunitylessening

steroids should never be used routinely to decrease symptoms (56).

Neuro-Lyme is mid-or-latestage (tertiary) Lyme disease, which may

account for the lack of positives on many antibody tests (antibodies

having been depleted by Bb, an ace immune system disabler.) Commonly,

active tertiary Lyme shows a diagnostic positive IgM response that is

conventionally but mistakenly thought to be a marker accurate only in

relatively early infection (57). Persistence of a positive IgG WB test

is most often seen in those with predominantly arthritic forms of Lyme

disease (58).

Although the tests should be run, attempts to check for positive DNA

is time consuming with results rarely coming back inside of several

weeks. Yet, the patient needs immediate treatment. That same dilemma

confronts both the patient with Seventh Cranial Nerve palsy as well as

the enterically compromised patient. If paresis or spasm occurs and

the esophagus stops functioning, a patient may choke on recently

swallowed food or fluid. If it occurs in the stomach, it may cause

nausea and gnawing abdominal pain. If even a partial paralysis occurs

in the small intestines, SIBO (SBBO) with bloating of immense

proportions may ensue. Paresis of the colon may result in mega colon

with severe constipation and/or encopresis even in very young children

in Lyme-endemic regions. Diarrhea resembling an IBS-like syndrome can

occur if there is Bb-sponsored gut hypermotility. Similarly, GI spasms

may also result in a plethora of symptoms, including spastic colon and

seeming occlusions. A trial on antimicrobials is helpful for those

suspected of having tick-borne diseases despite negative tests. The

" symptom intensification syndrome " known as a Herxheimer reaction

needs to be anticipated by both doctor and patient as potentially

distressingly difficult but is to be expected when immune systems

over-respond to a spirochetal die-off. This reaction should not be

confused with an allergic reaction to the antibiotic.

Most helpful diagnostic tests for Lyme disease are the direct or

photographed observations of a " Bulls Eye's " circular or oval skin

rash. Unfortunately, it is only present in roughly 50% of known cases.

If the lesion slowly expands (due to spirochetes multiplying in the

outer edge, which fact allows easier biopsy and culture) it is

perfectly diagnostic of Lyme disease or its associated " STARI "

(Master's disease†" a form of Lyme disease.) In endemic areas, patients

should be coached to photograph any suspect rashes and to keep the

living tick for a doctor's observation or Bb DNA testing. Western

Blots (WBs) are best done in a reference lab specializing in

tick-borne diseases with the doctor's insistence that all antibody

bands be counted and reported. The tests should employ the correct

strains of Borrelia and also not depend on spirochetes that have lost

DNA due to multiple passes through a series of hosts.

Acceptable tests have both high specificity and sensitivity. For

example, the C6 Peptide/Lyme test has excellent specificity so that

those tests that come back positive are valid and are confirmatory of

Lyme's presence. However, negative results from the C6 test merely

show that the test was done†" they do not show that Bb was absent. The

negative test does not prove that the patient is free of Lyme disease.

Useful tests include a urine Bb antigen test with positive findings

backed up by the highly accurate Southern Blot test. As noted, PCR

tests on all appropriate tissues/fluids, especially serum, whole

blood, urine, tears, mother's milk and CSF are valuable diagnostically.

Choices of tests for several Bb's co-infections are enhanced by

awareness of the prevalent strain/species of the infection that is

extant in the area where the patient was tick-inoculated. Tandem IFA

and PCR tests are usually performed for co-infections. In addition,

florescent microscopic views of stained slides can show babesiosis

ring forms inside RBC and other tests can show cystic forms of Bb

under black light. Bartonellosis can be tested for by PCR (blood and

tissues) and its positive WBs are considered diagnostic when combined

with history and physical evidence. As is true of Bb, however,

bartonella patients may be seronegative and without PCR-DNA captured.

A BRIEF OVERVIEW OF SOME APPROACHES TO THE TREATMENT OF TICK-BORNE

DISEASES AFFECTING THE GUT

Sensations of total, dire, overwhelming, unending, weakness or fatigue

in most seriously ill Lyme patients lead many Lyme patients to

consider suicide. Treatment begins with educating them about the

treatable, underlying diseases and about realistic expectations in

order to inspire hopefulness for recovery. The physician's listening

skills and willingness to give anxious patients extra time can be

life-saving.

Prescription of skillfully combined oral antibiotics in an attempt to

avoid IV treatment for all but those seriously afflicted with advanced

neuro-Lyme (patients that manifest MS-like or ALS-type symptoms) is

the next challenge (59). In addition to the usual antibiotics advised

for Lyme disease, telithromycin (Ketec) used cautiously or

azithromycin (Zithromax) may successfully accomplish blood-brain

tissue barrier penetration that is needed. Such patients have to be

monitored closely for liver, etc. side effects. In recent years, Lyme

expertise has included the combining of antibiotic(s) with those in

the azole family of drugs (such as metronidazole/Flagyl) that

penetrate cell wall-less cyst forms of Bb, forcing spirochetes out of

cover as it were to their demise from the antibiotics. Regularly

spaced " safety blood work " must be regularly ordered for all patients

who require long-term use of any antibiotics. For those with

Lyme-sluggishness of the gut with resultant SIBO, non-absorbable,

intestinal " antimicrobials " likely will be needed (60). Current usage

of rifaximin may include carefully monitored long term prescriptions.

Doxycycline has the advantage of being able to arrest both Lyme and

the ehrlichioses in those who are multiply infected with each.

Bartonella (the tick-borne variant) usually responds, albeit slowly,

to aggressive treatment by one of the quinolone family of antibiotics

such as levofloxacin (Levaquin) or by rifampin (Rifampicin).

Mycoplasmas may respond best to tetracycline, rifampin, and erythromycin.

Babesia, the red blood cell parasite, requires different approaches

for acute and chronic disease stages. In chronic babesiosis, the form

incidentally seen by gastroenterologists, a combination of

artemisinin, atovaquone (Mepron) or Malarone, a combination of

atovaquone and proguanil hydrochloride, and azithromycin are still

drugs of choice (61).

NUTRICEUTICALS AND ANTIMICROBIALS TO RESTORE THE IMMUNE SYSTEM AND THE

GI TRACT

Restoration of gastrointestinal systems damaged by tick-borne diseases

can be a formidable task depending on the presentation and severity of

symptoms, antimicrobial or other treatments involved, and any side

effects thus incurred. The goals are to enhance gut motility or reduce

spasticity, remove toxins, improve patients' general and gut-lining

immunity while killing off invaders such as tick-borne microbes,

fungi, and other gut opportunists (62,63).

Painful rectal area muscle spasms in Lyme patients usually respond to

alprazolam (Xanax) 0.25 mg (1?2 to one tablet) best chewed for quick

relief and Natural Calm, a formulary of instant release, water-soluble

magnesium. Rectal cramps probably can be prevented most of the time by

using the highest tolerated doses of daily magnesium†" slow release is

the recommended approach but many patients also need the quick-acting

powder at bedtime to prevent all kinds of Lyme-caused muscle cramping

or spasms.

Dietary intake of all sugars and non-complex carbohydrates should be

totally avoided while patients take antibiotics. Probiotics†" high

quality lactobacillus (2 enteric-coated pearls) once or twice daily or

more as needed and bifidus (at least one cap) once daily are essential

for gut protection during and following antibiotic treatment. Immunity

and energy enhancers such as extract from reishi mushrooms, Cordyceps

sinensis (at least one 740 mg capsule daily), Co-Enzyme Q10 (100 mg

twice daily), green tea, acetyl L-Carnitine (500 mg at least twice

daily), Vitamin B Complex-50 to 100, folate, sublingual B12, magnesium

(slow release tablets) taken to tolerance daily, gamma linolenic acid

(GLA) as refrigerated Oil of Evening Primrose (1?2 tsp. daily) or

borage oil (one 1,000 mg soft gel daily), Omega 3 EFA fish oil (one

soft gel 3†" 4 times per day), selenium (200 mcg one cap daily), alpha

lipoic acid (100 mg daily) and a comprehensive multivitamin (59)†" all

can be of great benefit.

Healing agents will be needed to repair the gut lining and restore

functions damaged by Lyme-Bartonella- Mycoplasma infections. That list

may include oral preparations of liquid Aloe Vera, Oil of Clove drops,

Uncaria spp., anti-fungal tannins, garlic, chewable licorice tabs,

betaine, Enteric-coated Oil of Peppermint, Conjugated linoleic acid

CLA) (1000 mg twice daily), a-lipoic acid (100 mg one daily), Slippery

Elm demulcent capsules (325 mg 1†" 8 three times daily), and ursodiol

bile acid tablets (64). Additionally, in the treatment of SIBO,

complete stool analysis with culture and sensitivity of opportunistic

bowel pathogens may elucidate the choice of antibiotic. Alternatively,

a trial may be undertaken with rifaximin (Xifaxan) 200 mg three times

a day until symptoms have cleared (60). Cholestyramine (Questran) may

be useful in reducing the recycling neurotoxins produced by tick-borne

diseases.

As tick-borne-diseased GI systems and their owners heal, relief will

be palpable. Physicians will partner in that gratification as well

when previously grimfaced patients move to the healthy side of a

bellshaped curve†" a graph that would measure the degree to which both

gastrointestinal tracts and lives have been restored to functional

capacities. These satisfactions satisfactions will be re-experienced

when wisely diagnosed and treated Lyme-sick patients will be able to

smile broadly at last, knowing in their guts that zesty appetites for

life really will be possible again.

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Posted

Thank you, Edy,

Yes, tested and declared leaky gut for sure!!

> >

> > Hi! , the young woman with severe M.E. that I assist,

shows

> > intolerances to almost everything. Because she is bedridden, she

> is

> > given a wonderful nutrient-rich drink that she uses for her

> > nutrition... it is the type that hospitals give to ill patients

who

> > can't eat through their mouths. (It contains all the fats,

> proteins,

> > vitamins, and minerals that she needs. Plus we give her

> supplements

> > of different things several times a day. Among these Calcium,

> > Magnesium, seal oil, cod liver oil, probiotics, etc.)

> >

> > We have been giving her about 1/4 cup (around half a deciliter)

of

> > fresh chicken broth five times a day. We have used chicken

> > stock(this is the liquid that we get when we boil a whole

chicken

> for

> > several hours in water)... we have tried turkey broth... now we

are

> > trying cod broth.

> >

> > For a few weeks one of these soups does OK, but then she

developes

> a

> > semi-intolerance for it... so we try another... and then she

> becomes

> > intolerant to that... so we go back to the first, etc. At first

we

> > believed there was something in these soups... some chemical...

> > something that her body is reacting to. But now we are thinking

> that

> > this is just one side effect of crazy serotonin levels and her

> brain

> > sending the wrong signals to her stomach. That is the only thing

> that

> > makes sense. She says all of the soups feel like a brick to her

> > stomach... all of the blood goes to her stomach as it works SO

> hard to

> > digest the soup... (but honestly, the soup is mostly water with

> very

> > little of anything in it at all).

> >

> > So, my question... Do you know anyone affected by Severe M.E.

and

> do

> > they have these same reactions to every type of food? (nausea,

> > stomach over-working to break down the broth, etc) Her cousin

who

> has

> > even worse Severe M.E. vomits every time she receives the

hospital

> > nutrient pack... her body rejects almost any type of nutrition.

> >

> > How common is this in Severe M.E. for a person's signals to be so

> > wrong that their stomach feels that a common beneficial thing is

a

> foe?

> >

> > Thank you so much!

> >

> > -

> >

>

>

>

>

>

>

>

Posted

annette barclay wrote:

> What I don't understand is why the broth is OK for a few weeks and

then causes the response!

>

> I can't see how theories such as a leaky gut would cause this, if OK

for a while.

>

> Like many CFS and ME things it may be a combination of factors.

> Annette

> (in London)

As a " Tapanui " survivor, your experience is priceless.

You've already described your personal observation of the biotoxin

mediated of mycotoxins from contaminated possessions, which is

precisely " The Effect " that I saw at Truckee HS, and exploited for my

own benefit all these years.

We could do a test of this, if we only had some cooperation!

Just imagine! If we could get a prototype for ME from Royal Free, a

Tapanui survivor like yourself, and a prototype for CFS to ALL go to

Ground Zero for CFS - where Dr Cheney and Dr observed the

cluster that caused them to contact the CDC and get the " CFS ball "

rolling!

The place is still a slammer and still possesses the capacity for a

suitable demonstration.

I believe that if the proper conditions were set up, I could take you

to the exact spot where CFS began as a " syndrome " and show you how the

activation of antigliadin antibodies causes that broth to be OK at

times and then intolerable at others.

When we " originals " are gone, the chance to do an experiment like

this will also be gone - forever.

-

Posted

>

> >

> How common is this in Severe M.E. for a person's signals to be so

> wrong that their stomach feels that a common beneficial thing is a

foe?

>

> Thank you so much!

>

> -

>

Hi & all,

Dr. Cheney says in the April 2005 Newsletter-conference

summary at www.virtualhometown.com/dfwcfids that because of low

cardidac output to the stomach you get food intolerance, foods that

you were able to eat before you got CFS now become a problem with

CFS.

Al

Posted

-I am not dis-agreeing, but why do you think Incline/Truckee is

still a slammer? Couldn't the area have been hit with food that was

tainted w/ something, or some other transient cause. I guess you

have info. that the Tahoe area is still producing more than it's

share of 'CFS'? As I just posted, I got CFS shortly after a trip to

the slammer.

Mike C

> > Like many CFS and ME things it may be a combination of factors.

> > Annette

> > (in London)

> We could do a test of this, if we only had some cooperation!

>

> Just imagine! If we could get a prototype for ME from Royal Free,

a

> Tapanui survivor like yourself, and a prototype for CFS to ALL go

to

> Ground Zero for CFS - where Dr Cheney and Dr observed the

> cluster that caused them to contact the CDC and get the " CFS ball "

> rolling!

> The place is still a slammer and still possesses the capacity for

a

> suitable demonstration.

> I believe that if the proper conditions were set up, I could take

you

> to the exact spot where CFS began as a " syndrome " and show you how

the

> activation of antigliadin antibodies causes that broth to be OK at

> times and then intolerable at others.

>

> When we " originals " are gone, the chance to do an experiment like

> this will also be gone - forever.

> -

>

Posted

But now we are thinking that this is just one side effect of crazy

serotonin levels and her brain sending the wrong signals to her

stomach. That is the only thing that makes sense. She says all of

the soups feel like a brick to her stomach...

besides the leaky gut syndrome others are mentioning there is

the " delayed gastric emptying " problem, part of the autonomic

problem? i have noticed this myself to some degree also...i do not

know how severe a problem this can become. i will comment that my

grandmother had mild parkisons and had some problems with

constipation due mainly to medications, so they were giving iv

reglan, which i strongly opposed and brought them many papers on

zelnorm which was fairly new back then(sure enough she developed

facial dyskinesia), a selective 5HT-3 (serotonin 3) agonist which

would improve the contractions in the smooth muscles of the gi tract,

whether it acts also at the end of the stomach (pylorus) i do not

know, but of all the prokinetics this appeared the safest even in

debilitated/elderly so i hope this may be of some help to those

involved in her care as the " brick " seems to allude to this problem.

this is also used in constipation predominant IBS (of which there is

higher incidence with us, IBS in general)...there are many papers on

medline about this, here is only one, (the simple test for delayed GI

transit time is swallow charcoal, i think the normal time to appear

is 24 hrs?). I would think a gastroenterologist or her physician

could better comment.

Title: Tegaserod (Zelnorm) for the treatment of constipation in

Parkinson's disease.

Abstract: We performed a double-blind randomized placebo-controlled

pilot study to determine the efficacy of tegaserod (Zelnorm) in

treating constipation in 15 patients with Parkinson's disease (PD).

There was a trend for improvement in the Subject's Global Assessment

(SGA) of satisfaction with bowel habits (NS) and the total SGA

(including abdominal discomfort, bothersome constipation, and

satisfaction; NS).

I was having trouble remembering the name, hence the delay.

What else is new.

I have also noticed difficulty with initiating swallowing at times

which i never had before at all. this is the post pharyngeal muscles

(initiation) and have never seen it on any list of " symptoms " . it

would certainly appear to be a seperate neurological " symptom " and

was wondering if others in the group have noticed this, it would not

surprise me with this.

BW

Posted

Hi i used to react to everything i took espeically any kind of suppliment in

the early years of sleeping my life away .... maybe trying homopathic things to

give her are easier on her body to help her , but start at miniscule amounts of

everything.

..also my body seemed to tolearate things a tiny bit better later in the day

versus early am. ..body more awake as day went on even if by tiny amount

i think helping to support the gut : leaky gut issues as well as taking stuff

for immune support helped decrease the reatctions of my body but not as severe

as her

... and yes i was told early on its a signaling promblem , my body was clueless

to everything i put in and everything would be a potential agent to attack.. by

my immune system.

a possible soultion but not main line cfids treatment is to use some kind of

singaling factor weather medication or some kind of porcine stem cell.may help

her body to communciate better ( was on bovine and porcine stem cells years ago:

early 2000s which did help but my body was not as reactive at that point)

good luck this illness is such a struggle and its hard to find the rite answers

but u have to keep trying ..

another thought ..try not giving the same broth day after day ..maybe body also

getting food sentiization : separate issue.

veteran of doing that and some symtoms are less with a rotation diet ..maybe

chix broth one day , than turkey than fish etc..

take care tealk

ps will be offline as getting replacement tower

Re: Food Intolerance with Severe M.E.

Hi, ,

I can't answer as to the commonality of this problem, but, you

describe me to a T.

I am not bedridden but, I can't eat much of anything without

reacting to it. When I do find a food or supplement I can take I

soon become sensitive to it. I spend a lot of time turning in

circles in the kitchen wondering what I can possibly eat.

If I have any kind of commitment I don't eat the day before,

because I might not be able to get out of the house the next day.

My symptoms can be anything from boating, nausea, feeling sick all

over, fever, heaviness.......

I know a lot of people here have digestive problems and we keep

trying various things to help.

>

> Hi! , the young woman with severe M.E. that I assist, shows

> intolerances to almost everything. Because she is bedridden, she

is

> given a wonderful nutrient-rich drink that she uses for her

> nutrition... it is the type that hospitals give to ill patients who

> can't eat through their mouths. (It contains all the fats,

proteins,

> vitamins, and minerals that she needs. Plus we give her

supplements

> of different things several times a day. Among these Calcium,

> Magnesium, seal oil, cod liver oil, probiotics, etc.)

>

> We have been giving her about 1/4 cup (around half a deciliter) of

> fresh chicken broth five times a day. We have used chicken

> stock(this is the liquid that we get when we boil a whole chicken

for

> several hours in water)... we have tried turkey broth... now we are

> trying cod broth.

>

> For a few weeks one of these soups does OK, but then she developes

a

> semi-intolerance for it... so we try another... and then she

becomes

> intolerant to that... so we go back to the first, etc. At first we

> believed there was something in these soups... some chemical...

> something that her body is reacting to. But now we are thinking

that

> this is just one side effect of crazy serotonin levels and her

brain

> sending the wrong signals to her stomach. That is the only thing

that

> makes sense. She says all of the soups feel like a brick to her

> stomach... all of the blood goes to her stomach as it works SO

hard to

> digest the soup... (but honestly, the soup is mostly water with

very

> little of anything in it at all).

>

> So, my question... Do you know anyone affected by Severe M.E. and

do

> they have these same reactions to every type of food? (nausea,

> stomach over-working to break down the broth, etc) Her cousin who

has

> even worse Severe M.E. vomits every time she receives the hospital

> nutrient pack... her body rejects almost any type of nutrition.

>

> How common is this in Severe M.E. for a person's signals to be so

> wrong that their stomach feels that a common beneficial thing is a

foe?

>

> Thank you so much!

>

> -

>

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