New to group

[Guest guest]

A small (but important) correction...I meant to type " Adrenal Fatigue " not

" Insufficiency " . Sorry!

>

>

>

> I am sorry for the loss of your mother and also sorry that you had the

additional stress of having your nodules messed around with by an apparently

incompetent operator.

>

> I have Hashimoto's and also had nodules (shrunk or disappeared now) ....it's

quite common.

>

> http://www.mayoclinic.com/health/thyroid-nodules/DS00491/DSECTION=causes

>

> excerpt:

> " Your thyroid gland consists of two lobes that resemble the wings of a

butterfly. The thyroid takes up iodine from food you eat and uses it to

manufacture two main hormones, thyroxine (T4) and triiodothyronine (T3). These

hormones maintain the rate at which your body uses fats and carbohydrates, help

control your body temperature, influence your heart rate, and help regulate the

production of protein. Your thyroid gland also produces calcitonin, a hormone

that regulates the amount of calcium in your blood.

>

> It's not known what causes most nodules to develop, but the following factors

are sometimes involved:

>

> * A lack of iodine in your diet

> * Hashimoto's disease, an autoimmune disorder that causes chronic

inflammation � " and underactivity (hypothyroidism) � " of your thyroid gland

> * A genetic defect of receptors that release thyroid-stimulating hormone

(TSH)

> * Radiation treatments to your head or neck in childhood

>

> Several types of nodules can develop in your thyroid gland: "

>

> Although it doesn't say so above, I am leaning to the idea that autoimmune

thyroiditis is to do with nutrient starvation and consequent methylation

abnormalities.

>

> Personally I don't take kelp due to the alleged contamination issues (arsenic

and other nasties) and also because I just don't know yet about whether it is or

isn't a good idea to take iodine (any form/s) for Hashimoto's ...I don't have

enough evidence to push me from my current position of " not now " .

>

> I'm not sure what site Roni was referring to ...I think she probably meant

>

> http://www.stopthethyroidmadness.com/

>

> which is Janey someone rather than Shoman.

>

> However following Roni's fifth piece of advice to " take a deep breath " will

help a great deal ...getting stirred up and emotional {as we do } puts more

stress on our adrenal function and it seems that adrenal insufficiency is at the

root of many hypothyroid problems. Doing a bit of good quality breathing is

helpful at any time ...it distracts the mind

>

> The " madness " siite will keep you occupied for sometime! There is also a

iodine group where some of the people do seem to take extraordinarily

large amounts of iodine (together with important supplements) ...there's a whole

protocol. It's somewhat experimental but (to my mind) based on some solid

foundations but (also to my mind) it is not the totality. Some on this list

frown deeply about the whole iodine issue for a plethora of reasons ...

>

> iodine/

>

> Low levels of zinc, copper, foltate, magnesium, Vit B12, Vit D3 will stop the

T4 replacement being utilised correctly as will a low ferritin level (iron

store) ...I believe that should be around 70. Because you are non meat eating

you may be low in B12.

>

> For me, I would not want my nodules messed about with again, nor would I be

happy to pay for a five minute session of nothingness with a so-called expert

....they seldom are (in my experience).

>

> You don't indicate how old you are but it is very common for Hashi' to reveal

itself at hormonal-shift times (after babies, menopause) so that may be

someothing to factor in to you plan to get well again.

>

> Wish you better.

>

> Trish

[Guest guest]

ldn is not allowed to be taken more then once a day.

for your carb problems you must look at slow carb,like lentils,humus,and pancakes from cheakpeas flower.also coconut cakes with stevia can help/

[Guest guest]

Hi Zahavi,

Thanks for the reply. Yes... I'll only take it in the evening.

Lori

From: zahavi <zahavi100@...>low dose naltrexone Sent: Mon, November 23, 2009 11:00:09 AMSubject: Re: [low dose naltrexone] Re: New to Group

ldn is not allowed to be taken more then once a day.

for your carb problems you must look at slow carb,like lentils,humus, and pancakes from cheakpeas flower.also coconut cakes with stevia can help/

[Guest guest]

Lori,

The mechanism , biochemically, for LDN takes advantage of the natural rise in production of B-endrophins as you sleep. For optimum results it is best to take LDN as close to bedtime as possible. Dr. Elissa Mullen, Seattle

From: Lori <lori..jill@...>zahavi <zahavi100@...>Cc: LDN <low dose naltrexone >Sent: Mon, November 23, 2009 11:16:39 AMSubject: Re: [low dose naltrexone] Re: New to Group

Hi Zahavi,

Thanks for the reply. Yes... I'll only take it in the evening.

Lori

From: zahavi <zahavi100planet (DOT) nl>low dose naltrexoneSent: Mon, November 23, 2009 11:00:09 AMSubject: Re: [low dose naltrexone] Re: New to Group

ldn is not allowed to be taken more then once a day.

for your carb problems you must look at slow carb,like lentils,humus, and pancakes from cheakpeas flower.also coconut cakes with stevia can help/

[Guest guest]

Welcome to the group. You're home here.

Oh my yes indeedy: thyroid problems are more common than not in people with

Lyme. (I've seen numbers running as high as 80%. So your experience is

standard.) The spirochete suppresses all kinds of hormone function; odds are

good your adrenals and reproductive hormones are probably whacked a bit as well.

The good news is that once these things are identified, they can readily be

treated. A lot of us do fine on Synthroid; if you're not really happy with that,

don't hesitate to ask for dessicated natural thyroid (Armour is the major brand,

but there are others). For adrenals, some of us have had good luck with Florinef

in *very small doses* -- be aware that people with Lyme should never use

corticosteroids, and this is the only exception you should contemplate.

Alternatively, try the supplement DLPA. For the reproductive hormones,

bio-identical HRT can do a lot to make you feel like yourself again. Your ND

should be able to do this.

Many Lyme-literate MDs (LLMDs for short) are well aware of all of this, and will

handle it as a routine part of your treatment. And all these things will tend to

subside considerably as treatment progresses.

You say you're on doxy right now. What are your doctor's further plans for

treatment?

Sara

On Dec 11, 2009, at 12:21 37PM, kpyoung@... wrote:

> Just wanted to introduce myself...my name is Patti Young. I joined this group

because I was recently diagnosed with lyme disease.

>

> I have been having symptoms involving chronic fatigue, muscle pains, memory

loss, difficulty thinking.... original diagnosis by doctor was " depression. "

(too bad he refused to acknowledge that the deer tick I gave him may have had

something to do with it).

>

> These symptoms continued on and off for about 4 yrs. Just before Thanksgiving

I began having difficulty with speech and motor coordination...fortunately a NP

ordered blood work and .... LD.

>

> I lost the use of my left are a few days later, then began having difficulty

with my left leg... after being on doxy for a week, my leg got better, but still

have minimal use of my left arm --

>

> To top that off, the blood work also suggested a thyroid issue... more blood

work and a diagnosis of hypothyroidism.

>

> So I guess my real question is does anyone know if there is a link to the two

diseases???

>

> Thanks,

> Patti

>

>

>

> ------------------------------------

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

[Guest guest]

Patti,

Welcome to the group. Sorry it took so long for you to get diagnosed. I had a

similar problem for 5 1/2 years. In my case, it turned out hypothyroidism

(diagnosed Oct. '03) was the beginning of my chronic illness which turned out to

be Lyme. The Synthroid (later Armour) I took didn't improve my health

much--even though the blood tests showed my thyroid hormone levels were normal

(with medication). I finally got tested for Lyme & co-infections in June '09

after rapidly declining over the winter & spring: severe exertional fatigue,

heart palpitations, mood swings.

Hypothyroidism can definitely be caused by Lyme.

My MD in NY ('04-'06) told me it was " psychosomatic " ! So I know what it's like

to be essentially told it's all in your head. Watch the documentary Under Our

Skin (with good friends & family). It came out last year. Follows the journey of

5 people with chronic Lyme and is very informative and engaging.

Are there Lyme Literate MDs (practitioners with a lot of experience & knowledge

about chronic Lyme) in your area? Most MDs follow the Infectious Disease

Society (IDSA) guidelines which call for only 1-2 months of antibiotics. That

just isn't enough for those of us who have been infected for many months or

years. I've been on heavy doses of oral antibiotics for almost 6 months and am

better--but far from well.

Best wishes for your recovery,

Kim

[ ] new to group

Just wanted to introduce myself...my name is Patti Young. I joined this group

because I was recently diagnosed with lyme disease.

I have been having symptoms involving chronic fatigue, muscle pains, memory

loss, difficulty thinking.... original diagnosis by doctor was " depression. "

(too bad he refused to acknowledge that the deer tick I gave him may have had

something to do with it).

These symptoms continued on and off for about 4 yrs. Just before Thanksgiving I

began having difficulty with speech and motor coordination...fortunately a NP

ordered blood work and .... LD.

I lost the use of my left are a few days later, then began having difficulty

with my left leg... after being on doxy for a week, my leg got better, but still

have minimal use of my left arm --

To top that off, the blood work also suggested a thyroid issue... more blood

work and a diagnosis of hypothyroidism.

So I guess my real question is does anyone know if there is a link to the two

diseases???

Thanks,

Patti

[Guest guest]

Why do some Lymies have good luck with Florinef? It controls electrolyte levels

or rather mineral turnover in the kidneys.

As for cortisone use in Lymies, the healthy adult adrenal gland produces between

15 and 30 mg of cortisol per day. If a person takes a dose that is smaller than

total daily production/needs, they will not suffer any ill effects on the immune

system. This is because of the feedback system in the brain. If a person takes

5mg of cortef a day, the pituitary takes this into account and drops production

from the adrenal gland via ACTH by 5mg. If cortisol levels get too low, the

immune system is as equally compromised as it is with too much. Taking low dose

cortef is not additive like a vitamin or something. It does not add on top of

normal daily production, but rather is factored in by the brain, which adjusts

output of the gland accordingly. Thyroid medication works in the same manner.

Usually, a dose less than daily needs is prescribed and it is left up to the

brain to tell the compromised gland to make up the difference between daily

needs and pill dosage.

So, in my opinion, if a person has severely reduced cortisol output, taking

small supplemental doses, will actually help them and improve immune function

and to be able to function better. Cortisol is essential for glucose management

and for controlling inflammation. Having too little is at least as bad as too

much. The body cannot heal or function properly with too little circulating

cortisol.

In my humble opinion, if a person takes a 24 hour cortisol test and is low

overall, they should supplement with what is needed to be in the normal range.

They will be better able to have a healthy immune system. Having adequate

cortisol makes the difference between being able to hold down a job and being on

disability in many cases. Just go to an addison's newsgroup.

Tish

[Guest guest]

There's more backstory to this, Tish. A few points:

1. Burrascano is emphatic that adding cortisol-based drugs of any kind leads to

huge explosions in Lyme growth. Taking them can undo months of drug therapy in a

matter of days. No one who's fighting Lyme should take these drugs casually or

lightly.

2. Your thesis presumes that the brain is healthy enough to successfully

moderate hormone levels -- something that's not usually true with Lyme patients.

The Lyme spirochetes love brain tissue, which tends to be very rich in collagen.

They're particularly invasive in the hypothalamus and pituitary, which are the

organs governing hormone regulation. This is why the vast majority of Lymies

tend to be very messed up on the HPA axis, and why we end up with hypothyroid as

well as adrenal insufficiencies that do look very much like 's. Unlike

most people, we can't count on our brains making the necessary adjustments. So

it's not a safe assumption that we can just take these drugs, and our bodies

will compensate. Odds are good they won't.

3. Furthermore, there's evidence (discussed long ago on this list) that the

people who do worst with Lyme have genetic issues that specifically involve the

aldosterone/adrenaline pathways, and which make them particularly reactive to

cortisol drugs regardless of their Lyme status (though Lyme makes this much

worse). I'm among this cohort myself.

Small doses of Cortef may well be appropriate and tolerable for many of us, for

the reasons you cite. But it's not a slam-dunk; and anyone with Lyme needs to

think three times hard and then tread very carefully before going down this

path.

Sara

On Dec 13, 2009, at 9:09 53AM, lkwetter wrote:

> Why do some Lymies have good luck with Florinef? It controls electrolyte

levels or rather mineral turnover in the kidneys.

>

> As for cortisone use in Lymies, the healthy adult adrenal gland produces

between 15 and 30 mg of cortisol per day. If a person takes a dose that is

smaller than total daily production/needs, they will not suffer any ill effects

on the immune system. This is because of the feedback system in the brain. If a

person takes 5mg of cortef a day, the pituitary takes this into account and

drops production from the adrenal gland via ACTH by 5mg. If cortisol levels get

too low, the immune system is as equally compromised as it is with too much.

Taking low dose cortef is not additive like a vitamin or something. It does not

add on top of normal daily production, but rather is factored in by the brain,

which adjusts output of the gland accordingly. Thyroid medication works in the

same manner. Usually, a dose less than daily needs is prescribed and it is left

up to the brain to tell the compromised gland to make up the difference between

daily needs and pill dosage.

>

> So, in my opinion, if a person has severely reduced cortisol output, taking

small supplemental doses, will actually help them and improve immune function

and to be able to function better. Cortisol is essential for glucose management

and for controlling inflammation. Having too little is at least as bad as too

much. The body cannot heal or function properly with too little circulating

cortisol.

>

> In my humble opinion, if a person takes a 24 hour cortisol test and is low

overall, they should supplement with what is needed to be in the normal range.

They will be better able to have a healthy immune system. Having adequate

cortisol makes the difference between being able to hold down a job and being on

disability in many cases. Just go to an addison's newsgroup.

>

> Tish

>

>

>

> ------------------------------------

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

[Guest guest]

Hopefully the damage that corisol does is not irreversable; for years as a child

(30 yrs ago) when I was told I had " bursitis " in my joints they shot me up with

cortisone shots...I was on 5mg cortef for years until about two years ago when I

read the findings against it. Two unrelated questions for the group if you

don't mind: for sometime now my symptoms have waxed and waned and changed here

and there, pretty normal I hear, but usually the same 30 or so symptoms keep

returning in cycles; all of the sudden, out of nowhere come a totally new area

of concern: pyschotic, rage, suidical thoughts daily,no longer at times able to

read, can't look and listen at same time (too much stimuli?) vertigo to the

point of vomiting and cringing with anger. Really feel like I am dying and want

to do it quickly rather than draw it out...other is shortness of breath and

burning hot chest pain now not just during exertion but even sitting still. Why

all of the sudden the change/have had a lot of neuro symptoms for over a year so

I know they've been in the brain for a while but behaving differently now.

Also, cry uncontrollably for hours each day. Sounds stupid maybe, but I don't

think I'm depressed; I think it's the spirochetes messing around in there, I can

feel them; when they move back to my knees, feet or ears, no more depression.

weird, eh? Anyway, I have narrowed my search to a few LLMD's around NY area and

would love some feedback for anybody in that area, thanks

I am new again to New England and will be choosing a LLMD this week (my goal to

try to keep my sanity); any advice in CT, NY area would be greatly appreciated.

>

> > Why do some Lymies have good luck with Florinef? It controls electrolyte

levels or rather mineral turnover in the kidneys.

> >

> > As for cortisone use in Lymies, the healthy adult adrenal gland produces

between 15 and 30 mg of cortisol per day. If a person takes a dose that is

smaller than total daily production/needs, they will not suffer any ill effects

on the immune system. This is because of the feedback system in the brain. If a

person takes 5mg of cortef a day, the pituitary takes this into account and

drops production from the adrenal gland via ACTH by 5mg. If cortisol levels get

too low, the immune system is as equally compromised as it is with too much.

Taking low dose cortef is not additive like a vitamin or something. It does not

add on top of normal daily production, but rather is factored in by the brain,

which adjusts output of the gland accordingly. Thyroid medication works in the

same manner. Usually, a dose less than daily needs is prescribed and it is left

up to the brain to tell the compromised gland to make up the difference between

daily needs and pill dosage.

> >

> > So, in my opinion, if a person has severely reduced cortisol output, taking

small supplemental doses, will actually help them and improve immune function

and to be able to function better. Cortisol is essential for glucose management

and for controlling inflammation. Having too little is at least as bad as too

much. The body cannot heal or function properly with too little circulating

cortisol.

> >

> > In my humble opinion, if a person takes a 24 hour cortisol test and is low

overall, they should supplement with what is needed to be in the normal range.

They will be better able to have a healthy immune system. Having adequate

cortisol makes the difference between being able to hold down a job and being on

disability in many cases. Just go to an addison's newsgroup.

> >

> > Tish

> >

> >

> >

> > ------------------------------------

> >

> > Lyme Disease News continually updated from thousands of sources around the

> > net: http://www.topix.net/health/lyme-disease

> >

> > MedWorm: The latest items on: Lyme Disease

> > http://tinyurl.com/23dgy8

> >

[Guest guest]

On Dec 14, 2009, at 6:06 08PM, robinlcurran wrote:

> Hopefully the damage that corisol does is not irreversable; for years as a

child (30 yrs ago) when I was told I had " bursitis " in my joints they shot me up

with cortisone shots...I was on 5mg cortef for years until about two years ago

when I read the findings against it.

Thirty years was so long ago that it's probably lost in the noise at this point.

But it's probably better that you're off the Cortef. It's usually given for

neurally mediated hypotension, which happens because the HPA axis is too messed

up to maintain blood volume. Many of us are, quite literally, down a quart; and

this in turn makes our blood thick and sticky, which leads to other problems

related to hypercoagulation and poor circulation. The little dose of Cortef

sometimes cranks the HPA organs back on just enough to fix this.

An alternative is to address the blood stickiness directly with natural blood

thinners like aspirin, ENADA, and other supplements that thin the blood. Also,

salting food to taste and staying adequately hydrated can help maintain blood

volume.

> Two unrelated questions for the group if you don't mind: for sometime now my

symptoms have waxed and waned and changed here and there, pretty normal I hear,

but usually the same 30 or so symptoms keep returning in cycles; all of the

sudden, out of nowhere come a totally new area of concern: pyschotic, rage,

suidical thoughts daily,

These are signs of neurotransmitter issues, particularly dopamine problems,

which commonly travel in the wake of adrenal problems. I've had good luck

managing this same set of symptoms with DLPA (taking 1000 mg will cause the

worst episode to clear in about 20 minutes -- it's that good). You might also

take a stab at boosting serotonin with 5-HTP and St. 's Wort. Lithium

orotate is another one to try. It's safe to use all of these at once, but always

good practice to try one at a time and not add others until you're sure you know

what the current one is doing.

If all else fails, some doctors give small doses of Adderall (yes, the ADD

drug), which is a dopamine uptake inhibitor.

> no longer at times able to read, can't look and listen at same time (too much

stimuli?)

Almost all of us have these sensory overload issues with light, noise, crowds --

just having the TV on is too much some days. It's the Lyme, working on the

myelin throughout the nervous system. When it gets horrible, I'll snuggle into

bed in a darkened room, close my eyes, and listen to podcasts (which give me

something to think about besides how crappy I feel).

> vertigo to the point of vomiting and cringing with anger.

Your LLMD, when you get one, is going to want to talk to you about babesia. If

s/he doesn't, bring it up yourself.

> Really feel like I am dying and want to do it quickly rather than draw it

out...other is shortness of breath and burning hot chest pain now not just

during exertion but even sitting still.

The term we use for this is " air hunger. " It's actually a slow, smothering form

of asthma. In my case, it's directly related to my up-regulated immune system,

which led to a couple of food allergies (soy in particular) that bring this on

very reliably.

No need to wait to fix this one. Ask your GP for a standard albuterol puffer --

the same kind asthmatics carry -- which can give you good, quick symptomatic

relief.

> Why all of the sudden the change/have had a lot of neuro symptoms for over a

year so I know they've been in the brain for a while but behaving differently

now.

The disease changes with our ages and stages, the environment we're in, the

things we're exposed to, and the stress we're under. It seems likely you've also

got a co-infection or two; and the changing relationships between the Lyme and

the other bugs can create changes in symptoms as well.

> Also, cry uncontrollably for hours each day. Sounds stupid maybe, but I don't

think I'm depressed; I think it's the spirochetes messing around in there, I can

feel them; when they move back to my knees, feet or ears, no more depression.

weird, eh?

Nope, not weird. I became acutely aware of this when I started taking the abx. I

could feel the drugs working -- first here, then there, then somewhere else,

moving every few days or few weeks as I got better.

Good luck finding your doctor. Hope it's soon. Hang on -- you WILL be better.

Sara

>

>

>>

>>> Why do some Lymies have good luck with Florinef? It controls electrolyte

levels or rather mineral turnover in the kidneys.

>>>

>>> As for cortisone use in Lymies, the healthy adult adrenal gland produces

between 15 and 30 mg of cortisol per day. If a person takes a dose that is

smaller than total daily production/needs, they will not suffer any ill effects

on the immune system. This is because of the feedback system in the brain. If a

person takes 5mg of cortef a day, the pituitary takes this into account and

drops production from the adrenal gland via ACTH by 5mg. If cortisol levels get

too low, the immune system is as equally compromised as it is with too much.

Taking low dose cortef is not additive like a vitamin or something. It does not

add on top of normal daily production, but rather is factored in by the brain,

which adjusts output of the gland accordingly. Thyroid medication works in the

same manner. Usually, a dose less than daily needs is prescribed and it is left

up to the brain to tell the compromised gland to make up the difference between

daily needs and pill dosage.

>>>

>>> So, in my opinion, if a person has severely reduced cortisol output, taking

small supplemental doses, will actually help them and improve immune function

and to be able to function better. Cortisol is essential for glucose management

and for controlling inflammation. Having too little is at least as bad as too

much. The body cannot heal or function properly with too little circulating

cortisol.

>>>

>>> In my humble opinion, if a person takes a 24 hour cortisol test and is low

overall, they should supplement with what is needed to be in the normal range.

They will be better able to have a healthy immune system. Having adequate

cortisol makes the difference between being able to hold down a job and being on

disability in many cases. Just go to an addison's newsgroup.

>>>

>>> Tish

>>>

>>>

>>>

>>> ------------------------------------

>>>

>>> Lyme Disease News continually updated from thousands of sources around the

>>> net: http://www.topix.net/health/lyme-disease

>>>

>>> MedWorm: The latest items on: Lyme Disease

>>> http://tinyurl.com/23dgy8

>>>

[Guest guest]

Sara,

For some reason has thrown ALL of the threads from this group into my

spam...kind of strange since this is a group ))

Thank you for the info ...  At this point, I'm not sure what the next step will

involve in my treatment.  I have a follow-up appointment with my doctor next

week (wanted to see me as soon as I finished day 21 of doxy)  She has also

referred me to an endocrinologist; I am on stand-by for cancellations, but have

a real appointment Dec 20.  I will know more following those appointments.

I have been put on " temporary disability " from work since my motor coordination,

memory, and speech have all been effected (hard to teach when you can't remember

what you were saying...I'm sure my students were wondering what I had for

breakfast when I stumbled around the room - lol)

I am interested in learning as much as possible about Lyme...especially since I

had it for so long " undetected. "    As I said, male dr said I was going through

the change of life, and " depressed " ... hmmm, I live a very active life -

compete with my dogs, ride horses for fun, and LOVE my job!  When this new dr

took my info and LISTENED to what I was saying, she immediately ordered the

blood work ...  at least I know what has been wrong all this time )))) 

I'll go back to reading posts now,

Patti

[Guest guest]

Robin, after I wrote this, it occurred to me to suggest that you talk to your GP

about getting a sleep study ASAP. Lyme causes huge sleep disturbances, which

will in turn create a lot of the problems you describe.

This is something else you don't need a Lyme doc for, but which may lead to big

improvements very quickly. Your insurance, if you have it, should cover this no

problem.

Sara

On Dec 14, 2009, at 6:44 46PM, Sara wrote:

> On Dec 14, 2009, at 6:06 08PM, robinlcurran wrote:

>

>> Hopefully the damage that corisol does is not irreversable; for years as a

child (30 yrs ago) when I was told I had " bursitis " in my joints they shot me up

with cortisone shots...I was on 5mg cortef for years until about two years ago

when I read the findings against it.

>

> Thirty years was so long ago that it's probably lost in the noise at this

point. But it's probably better that you're off the Cortef. It's usually given

for neurally mediated hypotension, which happens because the HPA axis is too

messed up to maintain blood volume. Many of us are, quite literally, down a

quart; and this in turn makes our blood thick and sticky, which leads to other

problems related to hypercoagulation and poor circulation. The little dose of

Cortef sometimes cranks the HPA organs back on just enough to fix this.

>

> An alternative is to address the blood stickiness directly with natural blood

thinners like aspirin, ENADA, and other supplements that thin the blood. Also,

salting food to taste and staying adequately hydrated can help maintain blood

volume.

>

>> Two unrelated questions for the group if you don't mind: for sometime now my

symptoms have waxed and waned and changed here and there, pretty normal I hear,

but usually the same 30 or so symptoms keep returning in cycles; all of the

sudden, out of nowhere come a totally new area of concern: pyschotic, rage,

suidical thoughts daily,

>

> These are signs of neurotransmitter issues, particularly dopamine problems,

which commonly travel in the wake of adrenal problems. I've had good luck

managing this same set of symptoms with DLPA (taking 1000 mg will cause the

worst episode to clear in about 20 minutes -- it's that good). You might also

take a stab at boosting serotonin with 5-HTP and St. 's Wort. Lithium

orotate is another one to try. It's safe to use all of these at once, but always

good practice to try one at a time and not add others until you're sure you know

what the current one is doing.

>

> If all else fails, some doctors give small doses of Adderall (yes, the ADD

drug), which is a dopamine uptake inhibitor.

>

>> no longer at times able to read, can't look and listen at same time (too much

stimuli?)

>

> Almost all of us have these sensory overload issues with light, noise, crowds

-- just having the TV on is too much some days. It's the Lyme, working on the

myelin throughout the nervous system. When it gets horrible, I'll snuggle into

bed in a darkened room, close my eyes, and listen to podcasts (which give me

something to think about besides how crappy I feel).

>

>> vertigo to the point of vomiting and cringing with anger.

>

> Your LLMD, when you get one, is going to want to talk to you about babesia. If

s/he doesn't, bring it up yourself.

>

>> Really feel like I am dying and want to do it quickly rather than draw it

out...other is shortness of breath and burning hot chest pain now not just

during exertion but even sitting still.

>

> The term we use for this is " air hunger. " It's actually a slow, smothering

form of asthma. In my case, it's directly related to my up-regulated immune

system, which led to a couple of food allergies (soy in particular) that bring

this on very reliably.

>

> No need to wait to fix this one. Ask your GP for a standard albuterol puffer

-- the same kind asthmatics carry -- which can give you good, quick symptomatic

relief.

>

>> Why all of the sudden the change/have had a lot of neuro symptoms for over a

year so I know they've been in the brain for a while but behaving differently

now.

>

> The disease changes with our ages and stages, the environment we're in, the

things we're exposed to, and the stress we're under. It seems likely you've also

got a co-infection or two; and the changing relationships between the Lyme and

the other bugs can create changes in symptoms as well.

>

>> Also, cry uncontrollably for hours each day. Sounds stupid maybe, but I

don't think I'm depressed; I think it's the spirochetes messing around in there,

I can feel them; when they move back to my knees, feet or ears, no more

depression. weird, eh?

>

> Nope, not weird. I became acutely aware of this when I started taking the abx.

I could feel the drugs working -- first here, then there, then somewhere else,

moving every few days or few weeks as I got better.

>

> Good luck finding your doctor. Hope it's soon. Hang on -- you WILL be better.

>

> Sara

>>

>>

>>>

>>>> Why do some Lymies have good luck with Florinef? It controls electrolyte

levels or rather mineral turnover in the kidneys.

>>>>

>>>> As for cortisone use in Lymies, the healthy adult adrenal gland produces

between 15 and 30 mg of cortisol per day. If a person takes a dose that is

smaller than total daily production/needs, they will not suffer any ill effects

on the immune system. This is because of the feedback system in the brain. If a

person takes 5mg of cortef a day, the pituitary takes this into account and

drops production from the adrenal gland via ACTH by 5mg. If cortisol levels get

too low, the immune system is as equally compromised as it is with too much.

Taking low dose cortef is not additive like a vitamin or something. It does not

add on top of normal daily production, but rather is factored in by the brain,

which adjusts output of the gland accordingly. Thyroid medication works in the

same manner. Usually, a dose less than daily needs is prescribed and it is left

up to the brain to tell the compromised gland to make up the difference between

daily needs and pill dosage.

>>>>

>>>> So, in my opinion, if a person has severely reduced cortisol output, taking

small supplemental doses, will actually help them and improve immune function

and to be able to function better. Cortisol is essential for glucose management

and for controlling inflammation. Having too little is at least as bad as too

much. The body cannot heal or function properly with too little circulating

cortisol.

>>>>

>>>> In my humble opinion, if a person takes a 24 hour cortisol test and is low

overall, they should supplement with what is needed to be in the normal range.

They will be better able to have a healthy immune system. Having adequate

cortisol makes the difference between being able to hold down a job and being on

disability in many cases. Just go to an addison's newsgroup.

>>>>

>>>> Tish

>>>>

>>>>

>>>>

>>>> ------------------------------------

>>>>

>>>> Lyme Disease News continually updated from thousands of sources around the

>>>> net: http://www.topix.net/health/lyme-disease

>>>>

>>>> MedWorm: The latest items on: Lyme Disease

>>>> http://tinyurl.com/23dgy8

>>>>

[Guest guest]

I do have a question about this statement

" be aware that people with Lyme should never use corticosteroids, and this is

the only exception you should contemplate. "

I have degenerative disc disease, which is often treated with pred if it goes

out (knock wood...a few years now )) and asthma...again, pred occasionally

if bronchi are too inflamed, and steroid inhaler...do I need to discuss these

meds with dr, or are they different than the steroids you are talking about???

What issues do the corticosteroids cause for people with lyme...soo much to know

))

Thanks,

Patti

[Guest guest]

There are some resources you should probably get hold of right away.

The book " Cure Unknown " by Pamela Weintraub. You might as well know what you're

up against.

The DVD of " Under Our Skin, " which is a documentary on Lyme recently put on the

short list for this year's Best Documentary .

Dr. Burrascano's Lyme treatment guidelines, available in PDF here:

<http://www.lyme-disease-research-database.com/lyme_disease_blog_files/burrascan\

o-treatment.html>

The hard news is that your garden-variety MDs (even a smart, up-to-date one,

which you seem to have found) and endocrinologists are almost certainly not

going to be up to the task of getting you to a final cure. They've got a very

limited view of the disease, and will offer you a very limited kind of

treatment. It's good to work their protocol all the way through; but once your

21 days of doxy are over with, odds are good they're not going to be able to do

much else (and be warned: you may be sent to a psychiatrist next).

You may want to start quietly looking for an LLMD in your area and set up an

appointment for February. Odds are good that's where you're headed.

Sara

On Dec 14, 2009, at 7:34 35PM, Young wrote:

>

> Sara,

>

> For some reason has thrown ALL of the threads from this group into my

spam...kind of strange since this is a group ))

>

> Thank you for the info ... At this point, I'm not sure what the next step

will involve in my treatment. I have a follow-up appointment with my doctor

next week (wanted to see me as soon as I finished day 21 of doxy) She has also

referred me to an endocrinologist; I am on stand-by for cancellations, but have

a real appointment Dec 20. I will know more following those appointments.

>

> I have been put on " temporary disability " from work since my motor

coordination, memory, and speech have all been effected (hard to teach when you

can't remember what you were saying...I'm sure my students were wondering what I

had for breakfast when I stumbled around the room - lol)

>

> I am interested in learning as much as possible about Lyme...especially since

I had it for so long " undetected. " As I said, male dr said I was going through

the change of life, and " depressed " ... hmmm, I live a very active life -

compete with my dogs, ride horses for fun, and LOVE my job! When this new dr

took my info and LISTENED to what I was saying, she immediately ordered the

blood work ... at least I know what has been wrong all this time ))))

>

> I'll go back to reading posts now,

> Patti

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Check out the link to the Burrascano guidelines I sent you. He goes into this at

some length.

Sara

On Dec 14, 2009, at 7:45 36PM, kpyoung@... wrote:

> I do have a question about this statement

>

> " be aware that people with Lyme should never use corticosteroids, and this is

the only exception you should contemplate. "

>

> I have degenerative disc disease, which is often treated with pred if it goes

out (knock wood...a few years now )) and asthma...again, pred occasionally

if bronchi are too inflamed, and steroid inhaler...do I need to discuss these

meds with dr, or are they different than the steroids you are talking about???

What issues do the corticosteroids cause for people with lyme...soo much to know

))

>

> Thanks,

> Patti

>

>

>

> ------------------------------------

>

> Lyme Disease News continually updated from thousands of sources around the

> net: http://www.topix.net/health/lyme-disease

>

> MedWorm: The latest items on: Lyme Disease

> http://tinyurl.com/23dgy8

>

[Guest guest]

I think it is important to be armed with information when you go in to see any

doctor, whether an LLMD or otherwise. Keep track of your symptoms on paper. Also

track any supplements and other meds you are taking.

I would recommended skipping the endocrinologist quite frankly and go straight

to the LLMD and here is why. If you go to any one particular specialist they

have a tool box equipped to treat their specialty, but they are not treating you

systemically. I went from specialist to specialist for almost a year before

finally finding my wonderful LLMD. I also went through the severe depression and

rage and while I now know that I was dealing with neuro Lyme, it did not help to

go in to a Dr. office feeling horrible with migraine, fatigue, pain in my neck,

hand and joints and a host of other symptoms, only to be told to get some sleep,

or that I did not have Lyme Disease, or to join a gym (I had just come from the

gym), or that I had PTSD from having two car accidents back to back.

I found myself getting more and more depressed with each doctor I saw. I tried a

few different anti-depressants and have settled in nicely with Cymbalta for

about a 6 months or so. I am also a " normal " suburban mom of three little ones,

PTA member, Fundraising Director at preschool, community volunteer, always on

the go and typical recipient of the " but you don't look sick " comment. Of course

I do not walk around with my PICC line hanging out to let people know that I

have to take IV meds along with about 20 pills per day to make me " not look

sick " .

One of my initial issues that presented with my Lyme disease was the

hypothyroidism, which was a mystery because I am otherwise healthy, thin and

full of energy. I guess I was " fortunate " to have had a car accident which was

bad enough to merit neck x-rays. The radiologist discovered " nodules " on my

thyroid. I spent about a month chasing that around with MRI, radioactive iodine

uptake, endocrinologist, and on....initially I was told that I potentially had

thyroid cancer.

So, it is important to have a doctor who takes a systemic approach, and factors

in all of your symptoms together. Otherwise, you will be chasing specialists

around for the rest of your life! I very strongly suggest getting a great LLMD,

now, and let him/her look at the whole picture.

Good luck,

Lissa

>

> >

> > Sara,

> >

> > For some reason has thrown ALL of the threads from this group into my

spam...kind of strange since this is a group ))

> >

> > Thank you for the info ... At this point, I'm not sure what the next step

will involve in my treatment. I have a follow-up appointment with my doctor

next week (wanted to see me as soon as I finished day 21 of doxy) She has also

referred me to an endocrinologist; I am on stand-by for cancellations, but have

a real appointment Dec 20. I will know more following those appointments.

> >

> > I have been put on " temporary disability " from work since my motor

coordination, memory, and speech have all been effected (hard to teach when you

can't remember what you were saying...I'm sure my students were wondering what I

had for breakfast when I stumbled around the room - lol)

> >

> > I am interested in learning as much as possible about Lyme...especially

since I had it for so long " undetected. " As I said, male dr said I was going

through the change of life, and " depressed " ... hmmm, I live a very active life

- compete with my dogs, ride horses for fun, and LOVE my job! When this new dr

took my info and LISTENED to what I was saying, she immediately ordered the

blood work ... at least I know what has been wrong all this time ))))

> >

> > I'll go back to reading posts now,

> > Patti

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Robin,

Neuro Lyme often has psychiatric manifestations. That's how I finally got

diagnosed. I was having horrible mood swings and crying jags.

I've been going to a practice in Westchester County NY for 6 months--which is

140 miles from where I live in Mass.

Contact me personally if you want more info.

Kim Ovrutsky

[ ] Re: new to group

Hopefully the damage that corisol does is not irreversable; for years as a child

(30 yrs ago) when I was told I had " bursitis " in my joints they shot me up with

cortisone shots...I was on 5mg cortef for years until about two years ago when I

read the findings against it. Two unrelated questions for the group if you

don't mind: for sometime now my symptoms have waxed and waned and changed here

and there, pretty normal I hear, but usually the same 30 or so symptoms keep

returning in cycles; all of the sudden, out of nowhere come a totally new area

of concern: pyschotic, rage, suidical thoughts daily,no longer at times able to

read, can't look and listen at same time (too much stimuli?) vertigo to the

point of vomiting and cringing with anger. Really feel like I am dying and want

to do it quickly rather than draw it out...other is shortness of breath and

burning hot chest pain now not just during exertion but even sitting still. Why

all of the sudden the change/have had a lot of neuro symptoms for over a year so

I know they've been in the brain for a while but behaving differently now.

Also, cry uncontrollably for hours each day. Sounds stupid maybe, but I don't

think I'm depressed; I think it's the spirochetes messing around in there, I can

feel them; when they move back to my knees, feet or ears, no more depression.

weird, eh? Anyway, I have narrowed my search to a few LLMD's around NY area and

would love some feedback for anybody in that area, thanks

I am new again to New England and will be choosing a LLMD this week (my goal to

try to keep my sanity); any advice in CT, NY area would be greatly appreciated.

>

> > Why do some Lymies have good luck with Florinef? It controls electrolyte

levels or rather mineral turnover in the kidneys.

> >

> > As for cortisone use in Lymies, the healthy adult adrenal gland produces

between 15 and 30 mg of cortisol per day. If a person takes a dose that is

smaller than total daily production/needs, they will not suffer any ill effects

on the immune system. This is because of the feedback system in the brain. If a

person takes 5mg of cortef a day, the pituitary takes this into account and

drops production from the adrenal gland via ACTH by 5mg. If cortisol levels get

too low, the immune system is as equally compromised as it is with too much.

Taking low dose cortef is not additive like a vitamin or something. It does not

add on top of normal daily production, but rather is factored in by the brain,

which adjusts output of the gland accordingly. Thyroid medication works in the

same manner. Usually, a dose less than daily needs is prescribed and it is left

up to the brain to tell the compromised gland to make up the difference between

daily needs and pill dosage.

> >

> > So, in my opinion, if a person has severely reduced cortisol output, taking

small supplemental doses, will actually help them and improve immune function

and to be able to function better. Cortisol is essential for glucose management

and for controlling inflammation. Having too little is at least as bad as too

much. The body cannot heal or function properly with too little circulating

cortisol.

> >

> > In my humble opinion, if a person takes a 24 hour cortisol test and is low

overall, they should supplement with what is needed to be in the normal range.

They will be better able to have a healthy immune system. Having adequate

cortisol makes the difference between being able to hold down a job and being on

disability in many cases. Just go to an addison's newsgroup.

> >

> > Tish

> >

> >

> >

> > ------------------------------------

> >

> > Lyme Disease News continually updated from thousands of sources around the

> > net: http://www.topix.net/health/lyme-disease

> >

> > MedWorm: The latest items on: Lyme Disease

> > http://tinyurl.com/23dgy8

> >

[Guest guest]

My first Lyme related symptom was hypothyroidism (which I didn't know at the

time). I went to several endocrinologists because even though I was on

Synthroid (later switched to Armour) and the thyroid hormone levels & TSH were

normal with treatment, I stilled felt chronically ill. The second

endocrinologist said my problems was not the endocrine system and " to look

elsewhere. " Turned out he was right. I finally was offered Lyme testing (after

5 1/2yrs) because of mood swings, crying jags and increasing fatigue (out of

breath going up stairs), heart palpitations, blood pressure & pulse instability.

I agree with mammamia3x: skip the specialists and find an LLMD as soon as

possible.

Good Luck,

Kim

[ ] Re: new to group

I think it is important to be armed with information when you go in to see any

doctor, whether an LLMD or otherwise. Keep track of your symptoms on paper. Also

track any supplements and other meds you are taking.

I would recommended skipping the endocrinologist quite frankly and go straight

to the LLMD and here is why. If you go to any one particular specialist they

have a tool box equipped to treat their specialty, but they are not treating you

systemically. I went from specialist to specialist for almost a year before

finally finding my wonderful LLMD.

>

> >

> > Sara,

> >

> > For some reason has thrown ALL of the threads from this group into my

spam...kind of strange since this is a group ))

> >

> > Thank you for the info ... At this point, I'm not sure what the next step

will involve in my treatment. I have a follow-up appointment with my doctor

next week (wanted to see me as soon as I finished day 21 of doxy) She has also

referred me to an endocrinologist; I am on stand-by for cancellations, but have

a real appointment Dec 20. I will know more following those appointments.

> >

> > I have been put on " temporary disability " from work since my motor

coordination, memory, and speech have all been effected (hard to teach when you

can't remember what you were saying...I'm sure my students were wondering what I

had for breakfast when I stumbled around the room - lol)

> >

> > I am interested in learning as much as possible about Lyme...especially

since I had it for so long " undetected. " As I said, male dr said I was going

through the change of life, and " depressed " ... hmmm, I live a very active life

- compete with my dogs, ride horses for fun, and LOVE my job! When this new dr

took my info and LISTENED to what I was saying, she immediately ordered the

blood work ... at least I know what has been wrong all this time ))))

> >

> > I'll go back to reading posts now,

> > Patti

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

>

> I do have a question about this statement

>

> " be aware that people with Lyme should never use corticosteroids, and this is

the only exception you should contemplate. "

>

> I have degenerative disc disease, which is often treated with pred if it goes

out (knock wood...a few years now )) and asthma...again, pred occasionally

if bronchi are too inflamed, and steroid inhaler...do I need to discuss these

meds with dr, or are they different than the steroids you are talking about???

What issues do the corticosteroids cause for people with lyme...soo much to know

))

>

> Thanks,

> Patti

>

Patti--I'm new to all of this but over the summer I was treated with prednisone

as they misdiagnosed my Lyme and my Lyme symptoms were masked for a little bit

but came back worst. That was the end of the line for me and they finaly figured

out that I had Lyme Disease. I was told that they feed off of the prednisone as

well as other vitamins that you may take. I was told that..that was the worst

thing that the doctor could have given me, so be careful.

[Guest guest]

steriod inhalers are usually acceptable as they go to the lungs. i have used

mine with no problem while i have been on my lyme treatment.

On Thu, Dec 17, 2009 at 10:32 PM, tracyh2x2 <tracyh2x2@...> wrote:

>

>

>

>

>

> >

> > I do have a question about this statement

> >

> > " be aware that people with Lyme should never use corticosteroids, and

> this is the only exception you should contemplate. "

> >

> > I have degenerative disc disease, which is often treated with pred if it

> goes out (knock wood...a few years now )) and asthma...again, pred

> occasionally if bronchi are too inflamed, and steroid inhaler...do I need to

> discuss these meds with dr, or are they different than the steroids you are

> talking about??? What issues do the corticosteroids cause for people with

> lyme...soo much to know ))

> >

> > Thanks,

> > Patti

> >

> Patti--I'm new to all of this but over the summer I was treated with

> prednisone as they misdiagnosed my Lyme and my Lyme symptoms were masked for

> a little bit but came back worst. That was the end of the line for me and

> they finaly figured out that I had Lyme Disease. I was told that they feed

> off of the prednisone as well as other vitamins that you may take. I was

> told that..that was the worst thing that the doctor could have given me, so

> be careful.

>

>

>

[Guest guest]

Hi,

I am new to the group but at least 8 years old to Lyme disease . . . It

seemed like a touch of grace to read the post about Dr. R of Arlington, MA and

his integrative approach. I am very grateful for the message and have googled

his site.

It would be great to have input from anyone else who knows of his practice.

I read somewhere to introduce yourself if you're new. Hope that's ok.

Accidentally I found myself introduced on this list when I searched " Dr. R,

Arlington, MA " to see if there were any other posts about this practice. One

thread that came up was #78820 " Documentary Tackles Lyme Disease Debate " Cape

Cod Times 8/10/08. I'm quoted in that article as the minister who was diagnosed

by Dr. R in NYC. I had forgotten all about the article, and it was a bit like

being retraumatized to read about losing the work and congregation I loved so

much.

It's a long story why I resigned, but the cause was not Lyme disease. Yes, I

have been incapacitated, but that was after the trauma of being forced to leave.

I know we all are affected in different ways by this illness, but I returned to

work after IV treatment raring to go. What made me resign later was prejudice

about Lyme, and something I'm legally not allowed to discuss in public to

protect others, in exchange for severance pay and the right to live in the

parsonage long enough for our son to graduate from high school. Our son has yet

to get over being forced from the religious community and house which he knew as

home since he was 2.

Anyway, I'm looking for an integrative doctor not only for myself but also

for our 20 year old son who lives at home (now on the Cape) and attends a

community college and was diagnosed with Lyme/Erhliciosis 2 years ago.

I had some background in special ed and nursing before becoming a minister so

want a doctor who will partner with what I already know in looking at his

complex of issues, in addition to the Lyme issues which resurface for me.

Our son has ADHD but also what's called nonverbal learning disorder (NLD).

NLD cause problems with the white matter of the brain, as does Lyme, but NLD is

not thought to be genetic. He is adopted from my husband's family, his birth

mother was addicted to crack cocaine (which could account for the NLD), he was

premature - but he HAS spent time in the woods of Cape Cod since he was three.

I want a doctor who will explore whether or not his learning disabilities

could be the result of Lyme which has existed longer than we knew, and even made

worse by the high levels of lead to which he

was exposed (and absorbed as a child) when we moved into the old parsonage in

Arlington.

Does anyone know if Dr. R in Arlington will do brain imaging,lead and other

toxin testing, and what kind of cost is involved in his treatment? I am not

working,except for writing and trying to support our son in college with his

learning issues and illness, (although he is a wonderful musician in trumpet and

voice). I'm worried about how hard my husband is working as a teacher and

musician to make up for my loss of income.

I was looking at integrative docs such as Dr. B in NY state, Dr. M in

Manhattan, but travel and overnights in addition to medical costs would put us

over the edge.

Any suggestions? Sorry to write such a long post. Will try to be shorter

next time. I hope to get to the point where I can be more supportive to others

who have suffered this illness and the doctors who have risked everything to

help us. It really is matter of injustice which the world has yet to

understand.

-

[Guest guest]

hey, great doctor there! I too am taking LDN primarily for fibro and am

excited in just the 3 weeks I've been taking it for the alleviation I've

felt. I have been able to sit at my desk and do my work more easily, with

greater mental concentration and ease. I freelance in publishing editorial,

writing indexes mostly, and really need an attention span for it. It's

definitely improving.

--

At 06:18 PM 1/21/2010, you wrote:

>I am very excited to hear the positive results from LDN for the treatment

>of Fibromyalgia pain. I started on LDN last night and am very hopeful it

>will help ease my pain. I have been diagnosed for over 12 years. I

>finally was sent to a pain management doctor and he has started me on the

>LDN... Blessings~

~~~ There is no way to peace; peace is the way ~~~~

--A.J. Muste

[Guest guest]

Re: pain

This is a good group to be in and hopefully someone can give you some

better ideas than I am going to give. When I needed information on

Drs. I would type in Physicians in whatever state and then go from

there. It takes some time but I have been able to pull up their

specialities and their background.

My pain started to be much worse when a Dr. put way too much fusion in

my back along with plates and screws. It has been eleven years now

and only gotten worse. Now I have neuropathy in my feet and water and

air to them only makes the pain worse so baths are quicker and then I

always have something on my feet.

Although after reading about your pain, my does not seem to be near that bad.

As an added note off topic, our son retired out of the service at Ft.

and lived in sville and worked in Hopkinsville, Kentucky

after retirement. We made many a trip to that area and of course

visited Nashville.

I wish you the best and feel sure there will be someone that can help you.

Lois

[Guest guest]

Hi Greg,

Welcome to the group. I'm sorry you are going through all of this. I know of no

doctors in your area, but wanted to respond and welcome you.

Trust me, when you have chronic pain it is still hard to deal with whether you

are married with four great kids, or you live alone. It is hard when your life

changes in an instant.

I hope you can find a great surgeon who can relieve the issues related to your

last fusion. My neck fusion was with a donor graft and hardware. Fusions usually

weaken the disks above and below the fused area because of the increased stress

on those areas. Unfortunately, that is the price to pay for the relief from the

herniated disk when you have a fusion. From what I have read and experienced

that is typical. That is why nobody should have a fusion unless it is absolutely

necessary.

What medications are you on? Are you seeing a therapist or someone you can talk

to about the substantial changes in your life?

I wish you the best of luck.

Barb

>

> I am new to the group and wanted to take a few minutes to introduce my self

and give a somewhat brief overview of my life changing injury that has left me

in horrible pain…each and every day….every passing moment of every hour. 

In February 2007 I was working for the Federal Government and without going into

all the boring details I will cut straight to the point.  I fell 27 feet and

though I am lucky to be alive my horrible nightmare of pain started the day I

had this horrific fall.  I was left paralyzed in my legs for a little while

after the fall but when paramedics arrived they were able to straighten me out

which helped me to regain feeling and control over my legs.  I injured T6/T7

protruding 3mm into my spinal canal, T11/12, and the worst was L4/L5. I tried

all of the non-surgical treatments that the doctors would authorize (PT, LSI and

Facet injections, TENS, etc..) .  Ultimately I went through surgery to remove

the L4/L5 disc and in

> its’ place they used the Prodisc TDR (Total Disc Replacement).  Up until I

had the surgery I was in excruciating pain that traveled down both legs and into

my feet.  I also experienced the horrible lower back pain and also constant

tingling in portions of my feet.  Within two days of having the disc

replacement surgery my pain had been reduced from a constant 6 to 7 pain scale

down to a 3 to 4 pain scale.  I did lose a lot of the feeling in my feet and

portions of my calves but this is to be expected when you consider the

complexity of the nerves at the location where the disc was removed.  I was

EXTREMELY happy and was in the process of getting my life back.  I went through

a strenuous work conditioning/hardening program and after just 6 weeks post

surgery my surgeon lifted all light duty restrictions and sent me back to full

duty without any work/light duty restrictions.  Two weeks after the surgery I

stopped taking the Oxycodone, Oxycontin,

> muscle relaxers and I no longer needed medication to help me sleep at

night.   It was like a nightmare of pain had finally come to an end and I

could finally start living my life again, taking my kids on outdoor adventures,

playing ball with my kids, living my life to its’ fullest with my children and

wife.  I lived this newfound life full of joy and happiness for the next four

months till one day in November 2008 when I was sitting on the ground and my

legs went numb.  I had immediate flashbacks and horrifying memories of the pain

that was still so fresh in my mind.  I was able to shake off the numbness and

regained feeling in my legs.  Two days later when I woke up for work one

morning the nightmare surfaced with a  vengeance and the pain came on like a

freight train hitting a brick wall.  From then till now the pain has become

progressively worse and I am having to take those HORRIBLE pain meds again.  I

had 4 months of false hope and now

> my life has been turned upside down all over again.  My 4 dear children just

do not understand why their daddy is in so much pain and why I cannot live the

life they have dreamed of and only have fond memories of.  It breaks my heart

to see my children suffering because of a work injury that I had no conrtol

over…a work injury that was deemed no fault of my own and one that could not

have been prevented other than me not being in the wrong place at the right

time.  I have again been through so much testing….abnormal EMG, MRI after MRI

showing bad discs and loss of height in the discs above and below my artificial

disc, LSI and FACET injections, etc….  All of this to find out that the

artificial disc is causing all of this pain....causing my body to have an

inflammatory response to the artificial disc….stress on the discs above and

below the artificial disc and much, much more.  To compound the situation T6/T7

is causing horrible pain around

> my ribs now and excruciating pain in my middle back.  I was sent in for an

emergency MRI because I had lost feeling in my middle back.  The Orthopedic

Spinal Surgeon who consulted with my on an emergency basis stated that yes this

is causing the horrible pain but there is nothing they can do because operating

on T6/T7 is very risky since they have to go through the chest cavity.  Unless

it causes life threatening symptoms he stated there is not a surgeon who would

risk my life to try and fix the disc.  URGGGGGGGGGG….I am in tears as I type

this email knowing that I do not have much hope for the pain in my legs or

back.  To alleviate some of the pain in my legs the orthopedic surgeons and

second opinion surgeons are recommending that they take the artificial disc out

of my L4/L5 and fuse me from S1 to L2.  This sounds easy enough except it is

another extremely risky surgery that not many surgeons or neurosurgeons have had

experience with.

>       So, as you can probably tell from my email, I just want to be able

to talk with others who know what this pain is like.  As you hear time and time

again….this kind of pain cannot be understood or even imagined unless you have

been there to feel it.  Just knowing there is a wonderful group of people who

have shared this pain gives me some hope and time to get my mind off of this

horrible situation.  I guess if I was all alone and did not have the most

wonderful wife in the world and 4 of the most incredible children  it might be

a little easier to deal with.

>      Since we do not have any family close by at our current home we are

going to be relocating to Western KY where my parents and siblings live.  This

way we can get some much needed help with a lot of the every day tasks that I

can no longer perform.  I would like to ask the group in any knows of a good

Orthopedic Spine Surgeon or Neurologist who has experience performing back

surgeries.  We will be close to Paducah in KY and sville and Nashville in

TN.  I would love to hear any recommendations you may have.  I need to find a

good surgeon and also a good pain management doctor before we make the move in

May.

>  

> Take Care,

> Greg

>

>

>

>

>

[Guest guest]

My guess would be that as he was glancing through what you printed he maybe caught a few words and took them out of context not having read the whole thing.  Since you have a relationship with him it might be worth asking him to actually read what you gave him and then see if he'd be willing to discuss it.  If he actually took the time to read through the lit I cannot imagine there would be anything in there that would horrify him.  Nor is there anything with this medication protocol which should result in such a response.

Some people process faster than others.  He may not have been able to take that much new info in at once and just saw a few words which out of context gave him an inaccurate idea of what the drug was and what you were asking for.

Good luck,Jaxi (who orders is herself from India and makes her own because she didn't want to have that convo yet)

On Wed, Jul 28, 2010 at 10:02 PM, Theresa Schroeder <teezaloha@...> wrote:

Hello!

 

I've justjoined,  read a few of the posts and feel the need to talk about

what happened today. I had read about LDN back in April and felt

very excited about the possibilities. I've had CFS/M.E. since 1976--it became

worse in 1987 and I was finally diagnosed in 1987 with Fibro and/or CFS by

both a rheumatoligist and neurologist. I have been on Social Security Disability

since 1997.

 

Since reading the April article, I've done more online research on LDN and

felt confident that it would be safe to try. I made an appt. with my internist

who has always been helpful and supportive. We have tried every available

prescription drug in recent years (Lyrica, Cymbalta, Savella, etc.) which

was supposed to help with FMS symptoms. He has also prescribed

Ultram, which only made me feel nauseated and " spacey " --did nothing for pain.

 

Okay, today I had an appt. with him to discuss the LDN. I printed out everything

from the websites, including info on the Stanford and PA State research. At

first my dr. seemed interested. Then he looked horrified. He said he would not

" go there " and would not explain why. I assume that he feels this is a " heavy duty " opiate,

as he compared it to oxycontin. He said perhaps I should go to a " pain clinic " ,,,

he refused to explain his refusal to even discuss this with me. I felt frustrated

and disrespected--after five years of seeing this man every 3 months.

 

He renewed my Rx for Clonazepam (which I've been taking for 15 yrs, 1 mg/night)

and also gave me a prescription for Vicodin, which barely takes the edge off the

pain and which I rarely have taken in the last 20 years. This dr. knows I've never

had any substance abuse issues--i have never smoked cigarettes and rarely

drunk alcohol. Before the illness became so severe I had a great career, family, etc.

 

So would someone please explain to this " newbie " what's going on? Why did my

normally unflappable dr. act as if I'd tossed a live grenade at him? Is he terrified at

losing his license or is this just him? If it's the former, then wouldn't it be better if a family dr. could prescribe what her/his patient needed instead of sending them to pain clinics or who knows where? This seems truly nuts to me.

 

He did ask his nurse to see if she could find a " pain clinic " to refer me to...she'll

call me..

 

I feel very discouraged.

 

By the way--those " racing thoughts " I have lived with for many years and know others who have them who also have CFS...just part of the overall syndrome. Clonazepam used to help

with that, but not so much any more, but it does help me stay asleep. If LDN caused

my thoughts to race, it wouldn't bother me! I am desperate after over 20 years for

some energy, for some chance at a life, just to be able to try this--I've tried everything

else that wasn't totally " screwy " ...(I have a slightly low thyroid which is now normal on thyroid meds. I take a low dose of neurontin every nice..doesn't seem to help, except with sounder sleep. Other than Excedrin, that's all I take--and more meds than I've taken in my life at one time!)

 

Thanks everyone for bearing with me and listening. I don't know if LDN would help me,

but I feel I deserve the chance to try it.

 

All the best,

 

Tee