Question about Lyme disease-Drs refuse to diagnose Lyme

[Guest guest]

I come late to this thread yet I want to post this message I just

received from an old school acquaintance. The immediacy of it

touched me and it made me think of this group and it's empathy and

knowledge. The shame allopathic doctors seem to lack is appalling.

If any in this group have experience treating Lymes disease I would

appreciate your e-mails. Any ideas Doc?

 

January 30, 2005-HELP

 

Dear Concerned Friends & Family:

 

Some of you know that Darla has been facing some unexplained health

challenges over the last few years. Her condition continues to

worsen and the doctors seem unable to help. We have seen several

family practice physicians as well as an array of specialists that

they have referred her to along with ones we have asked to be

referred to. There have been a number of suggestions (lupus,

multiple sclerosis, fibromyalgia, rheumatoid arthritis, depression,

Lyme's disease) given by these doctors, but no sure diagnosis. One

doctor felt sure that he knew what the problem was, but was not able

to give an official diagnosis for fear of losing his medical

license. (More on that issue later.)

 

Here's a little bit on Darla's symptoms. Some symptoms are fairly

regular and others more intermittent. There may be several things

at work here or they may all be related to one common cause.

Sometimes the symptoms seem to be worse the week or two before her

period. Some have suggested that this is all in her head...that

it's made up. Darla does not have a hypochondriac " bone " in her

body. She may even down-play these symptoms if you were to talk to

her. With some of us she is very upfront about how much pain she is

in and how badly she hurts. Her symptoms are frequent, real and

seriously reducing her quality of life. Here in brief are some of

the challenges that she faces:

 

 

· Not being able to sleep, even when very tired

 

· Arms and legs falling asleep when standing or lying down

 

· Her periods seem to be more difficult for her than they

used to be

 

· Narrowing of vision...especially when she has headaches

 

· Noticeable memory loss and confusion at times

 

· Headaches

 

· Muscle soreness (moves around)

 

· Soreness in her joints (moves around)

 

· Hair loss

 

· Low energy

 

· Ribs hurting

 

· Loss of grip

 

· Back aches

 

· Numbness in certain areas

 

Although her joints hurt, she believes that her pain is as much in

the muscles as the joints...maybe even more than the joints. The

pains in the joints as well as the muscles seem to be migratory.

What hurts today may not be what's hurting tomorrow...but it will

come back around.

 

One doctor asked Darla what she would diagnose her condition as...

She said she wasn't really sure. Since then she and I have spent

some time reviewing her medical records. Records from La Clinica

(her doctor's office from the time we moved to Oregon in 1992 until

just about two years ago) suggest that Lyme's disease was thought of

as a possibility for Darla in 1994, but dismissed. All the symptoms

were present, but the lab tests did not confirm that it was Lyme's,

so no treatment was given. Things got better for a while, but

eventually got much worse and by about 2000 we were actively trying

to figure this out once again. We next went to Dr. Bramen, a friend

and specialist we self-referred to. He has records and test results

that suggest that Lyme's disease is a definitely a possibility. He

was definitely convinced that it is Lyme's. Unfortunately he had

diagnosed a number of other patients in the area with Lyme's and had

been threatened with having his license to practice medicine revoked

if he diagnosed another person with Lyme's disease. He did give

Darla a course of antibiotics. After a while she seemed to

improve. Dr. Bramen moved away shortly after. Eventually the

symptoms have come back and worse than ever. They've been quite bad

for well over a year now.

 

As previously mentioned, we have started doing some research on our

own and comparing Darla's symptoms with those of the possible

illnesses the doctors have said she might have. We have been amazed

when comparing the symptoms Darla has, with the information we've

found regarding the symptoms of Lyme's disease. Nothing else that

has been suggested as the possible cause of Darla's problems fits as

closely as Lyme's disease. The symptoms that don't fit directly

with Lyme's do fit with loss of both quality and quantity of sleep.

 

After reviewing all this material, we are convinced more than ever

that Darla is fighting Lyme's disease. I know that for whatever

reason, the medical establishment in the Northwest (and apparently

in other areas of the country) is resistant to diagnosing someone as

having Lyme's disease. I don't know why. The research we've done

suggests that if it is even slightly possible that a person has

Lyme's disease they should be treated early on with antibiotics. If

only that had been done back in 1994 when this first started, Darla

would probably not be suffering now. Even now we believe something

can be done to help her.

 

It appears that Darla is in the later, more advanced stages of this

disease. Before she gets treated for any other possible ailments

(arthritis, fibromyalgia, etc.), we would like her to be treated for

Lyme's disease. The problem is that no one has been willing to

diagnose her with having this disease...even though they haven't

diagnosed her with anything else. I know that this disease is well

recognized in other parts of the country and that quality treatment

giving positive results is available. If we must, we will travel to

get the needed treatment. We just need to find someone who knows

this disease, can help us be sure that is what she has, and is

willing and capable of treating her for it.

 

We have communicated our belief that this is Lyme's Disease with

Darla's primary care physician, Dr. Kristen Dillon and her most

recent specialist, a rheumatologist. Neither of them seems willing,

as yet, to diagnose Darla with Lyme's...especially without some sort

of blood test or lab test to prove it. The problem is that there

does not seem to be any really accurate tests for this. Most

websites we have found regarding the diagnosis of Lyme's disease say

that it is very difficult to diagnose and that no test exists that

is accurate in proving that a person has the disease. The websites

also go on to say that if a person has the symptoms of Lyme's, they

should be treated as such even without the confirmation of positive

test results. At this stage of the disease, I.V. antibiotics over a

period of time seem to be the treatment of choice. Permanent damage

to Darla, both mentally and physically appears to be taking place.

This fits perfectly with what the reports suggest is the result of

this disease going long time periods without treatment. We want to

get her help before any more damage occurs.

 

Darla's symptoms have continued to worsen over the last two months

at an alarming rate. She is to the point of being despondent...very

discouraged...in a lot of pain and discomfort. She never spends the

entire night asleep or in the same location. She moves from

recliner, to bed, to sofa, to recliner in an effort to find some

relief from her pain. She hardly is able to function at home. By

the time we get home from work, she is only able to sit down and

rest until she falls into her uncomfortable and sporadic sleep. It

is getting difficult for her to function at work. Something has to

change. We need your help. Spread this information around to

anyone you think might be able to help. Anything you can do would

be appreciated.

 

Thank you so much for your concern and prayers!

Sincerely,

 

Dale E. Milam

 

 

herbal remedies , " Sharyn E. Cerniglia "

<sharyn.cerniglia@v...> wrote:

>

> That's not relevant to anyone but me because it was the remedy

chosen for

> the totality of my symptoms. In homeopathy remedies aren't

prescribed by

> disease name but by the totality of the vital force's reaction in

terms of

> symptoms. Your correct remedy would likely be entirely different

from mine

> but would achieve the same result.

>

> Sharyn

>

> >

> > tempo33x [tempo33x]

> >

> > What Homeopathic remedy did you use?

>

>

>

> --

>

>

> Version: 7.0.302 / Virus Database: 265.8.2 - Release Date:

1/28/2005

[Guest guest]

As I said in my post that you snipped below yours, I was cured of lyme

disease by homeopathy. Why don't you find a good classical homeopath (email

me privately for a list you can start with; they work very well long

distance so you don't need someone close by....nor do you need to " get a

diagnosis " of lyme disease; a classical homeopath will work with the

totality of the symptoms, not a disease label) and have him or her treat

Darla?

 

She can reinforce classical homeopathy easily with good nutrition and that

will help, but homeopathy *can* cure her, diagnosis or no!

 

Sharyn

 

>

> Gary Saucedo [garysaucedo]

>

> If any in this group have experience treating Lymes disease I

> would appreciate your e-mails. Any ideas Doc?

 

 

 

--

 

 

Version: 7.0.302 / Virus Database: 265.8.3 - Release 1/31/2005

[Guest guest]

Dear Gary,

Reading over the problems getting Darla diagnosed and treated for lyme

disease just makes my blood boil! So many doctors these days just

don't seem to care about helping patients. I can honestly say that

doctors have never helped me with anything other than reducing my

pocket book. I know there are good ones out there; I have not been

fortunate enough to find one of them.

This whole bit about everything being a person's immagination really

annoys me. I went through that with so many doctors over my female

problems. I know my body better than they do, so I knew for a fact

that something was wrong. I had to read up on it to find that I had a

hormone imbalance...was low on progesterone. I believe that it was

also the reason for my miscarraige, but the doctors had no idea as to

a cause.

It has been that way with all of my health issues. The same for my

husband and our daughter. Come to think of it, the same goes for our

pets! We have had much better success at self diagnosis and self

treatment(lots of reading). Yes, people think that I am some sort of

freak when my daughter gets stung by a yellow jacket, and instead of

rushing her to the ER, I run to the house and grab the Vitamin C &

Quercetin Bromelain for her to take orally, and I make a paste of

water and plain meat tenderizer to put on the sting site. With any

health issue, I start grabbing health books off the shelf.

I agree with the others that it would be great if you could find a

homeopathic doctor that has successfully treated lyme disease. As far

as herbs or vitamins to help...If I were going through this, I would

take large amounts of a good quality Vitamin C plus bioflavonoids

divided throughout the day, lots of raw garlic (or I use aged liquid

garlic extract because it is easy on my stomach), Vitamin E, Vitamin B

complex, Vitamin A, and some good minerals including zinc and copper.

I might also alternate between echinacea, goldenseal, and astragalus.

A person would certainly benefit from eating more raw sprouts,

vegetables and fruits...organic if possible.

Check out some library books or head down to the book store so you can

read up on natural ways to help the body heal itself. Don't give up

after only a few days or a few weeks of using vitamins and herbs.

Sometimes it takes a while to notice improvement. She has been sick

for a long time, so recovery won't happen completely overnight.

Best of luck!

Teresa