Re: An ex wife having a bad herx day, is this like PMS?!?!

[Guest guest]

Hi Donna,

Terrific letter, please keep us posted on your ex-husband's case. How

wonderful that you have blended the families so well. I am amazed at all

you are accomplishing during your herx....as for is it like PMS??? Some say

it is, but in my late 30's I had severe PMS, and I was much crankier, and

mean! LOL...then again, I wasn't taking 30 mg of Paxil at the time as I am

now.

Hugs,

Marta

>From: tcandkk <tcandkk@...>

>

>A copy of the letter I just faxed....

>

[Guest guest]

Dear Donna,

In reading your letter, I want to applaud you and your husband for

going the extra mile to assist your ex-husband, the father to your

children, to get on a road to treatment and better health. Would that

we all acted so humanely and sensibly concerning former relationships.

I wish you and your family, and all the best in the medical treatments

and hope that will be able to sue to have his military benefits reinstated.

This disease is so inhumane mostly because our government refuses to be

pro-active (I hate jargon words - but it seemed to fit the best) and to let the

people in our country know to be aware of Lyme disease, how devastating

it can be undiagnosed and untreated, and because of the government's stand

too many of us are finding ourselves up a creek without a paddle.

I read recently that one of the major reasons our government that is supposed

to be by the people and for the people, refuses to do more than have the CDC

downplay Lyme disease and make it difficult for many to be diagnosed and

treated is due to the fact that the government does not want to admit to a

second

infectious disease sweeping not only our nation, but the world, that there is no

cure

for at the present time. The government feels that " our resources " cannot

afford to

" care for " the hundreds of thousands of people who are already Lyme victims and

the potential new victims that would be discovered by seeing Lyme literate

physicians

who are at present working on the " front lines " with people like you and me.

How moronic, does the government (I know I am writing as if it's an entity with

the powers of a single human being, but actually, all of the agencies and people

who

are fighting so hard to keep Lyme from the awareness of the public are acting in

concert to see that this is exactly what happens) believe that by sticking it's

collective

head in the sand that Lyme disease will simply disappear? AIDS did not simply

disappear and far too many people have been stricken and died from this deadly

infectious disease. I have to wonder if the government is in it's own way

assuring

that there will be a surplus for the Social Security Administration if enough of

the

people who will be set to draw old age benefits up and die instead? Just one of

those wandering thoughts we get from time to time.

The browser I have lets me specify an organization, but of course I don't have

one

not being physically able to work, much less do more than go from bed to

computer

and back to bed after a short while, I am unable to even think about trying to

start

a grassroots movement to force the government into action. Yet, that is what

must

happen, we must bring more pressure to bear. At any rate, as a means of doing

what I can, I've told my browser program that my organization name is as shown,

" Lyme Awareness Now! " , and wonder if we all used this name in our browsers if

it would at least find it's way to people who have no knowledge of Lyme disease

and let the word become known and possibly down the line there will be a new

grassroots political movement? Again, just another wandering thought.

I found out yesterday that my insurance company has not paid the bills submitted

by my Lyme literate physician for my care. Instead, they have forwarded to

their

" own doctors " to evaluate for " medical necessity " , and we all know how that will

turn out. I had thought that by paying through the nose for not one, but two

major

medical policies for traditional medical care, I was paying $5,000 annually for

myself and my husband to be able to receive adequate medical care from the

physicians and facilities we chose to be treated by. Wrong. Apparently, I've

been suckered into thinking we had coverage when it looks like instead we are

going to be dumped because there is not yet a " cure " for chronic late stage Lyme

with neurological involvement.

I was quite upset yesterday and still am today. If our collective government

would

get off their collective butts and do the right thing, the insurance companies

would

not be able to screw us right and left and leave us to pay for our own medical

care

in spite of the money we've already paid to have our sickness covered by these

insurance policies. I wrongly believed because our Lyme literate physician was

being conservative in our treatment, second confirming diagnosis's were

obtained,

and we are not trying to defraud the insurance companies that our medical claims

would be paid according to the agreement we made with them in exchange for

our hard earned money.

In short, we all should be afraid, be very afraid, that the insurance companies

and the government both are leaving us out in the water to sink or swim. I had

visions yesterday of ending up homeless in spite of a work ethic that drove me

to attend night school while in high school so I could graduate early and start

working an donating a portion of my earnings sooner to our government! I've

worked for almost a decade in chronic pain, I've spent over 20 years seeking

an answer for what was wrong with me as I started having all over joint pain

some 20 years ago. Something is very wrong with America. When we can

spend untold millions or is it billions to find our president guilty of doing

what

a vast segment of Americans also do and also lie about, instead of spending

those same dollars on Lyme Awareness and treatment programs.

Today, I am heartsick and worried to death. Part of that is caused by what

I call the emotional Twilight Zone that has become a way of life for me since

the worsening of the neurological problems caused by Lyme disease of long

standing that was neither diagnosed or treated! I feel certain the only reason

it

has been finally diagnosed was because of the worsening neurological symptoms

which escalated the Summer of 1997.

Is " Lyme Awareness Now! " we can use in our browsers, little though it may

be to begin this grassroots movement that we hope will change what it means

to have Lyme disease and the treatment/s available to each and every one of us?

Again...just a wandering thought. Funny thing is, though it's not in the least

funny, is that we are the " lucky ones " we finally know what is wrong with us and

know not to buy into the b.s. of " it's all in your head " or that all we need is

to

get out there and exercise or something equally stupid which has been suggested

to us by physician's who are toting the party line to not diagnose and treat

Lyme

disease because it doesn't exist. Like the emperor's clothes, you can only get

by with this inaction for so long then the whole thing comes apart in your face.

Lyme disease has now passed AIDS in the number of new victims each year.

AIDS patients, family and friends have my deepest empathy and my prayers

that a cure will be found in time to save many many lives and hopefully the

lives of everyone currently stricken with HIV and or full blown AIDS. I do

not want anyone to hear or read into what I've written that I in any way am

trying to negate the very real and very sad fact of AIDS. I only used AIDS

as a comparison because it is an infectious disease that the government tried

to ignore to the detriment of our nation and too many people whose lives have

been claimed by this horrific disease.

May we all join together in common cause and help each other when one

is too weak or too sick to make it without aid, and may we gain in our

humanity, by caring for each other as Donna and her husband are doing. We

cannot afford to stop caring for each other and to do all that is possible in

trying to inform and educate those around us about Lyme disease.

Wishing us all health and freedom from pain,

both physical and emotional -

P.S. I've left Donna's email post intact here and did not cut

because I wanted to make sure anyone who read my post

would have Donna's example of humanity to read.

tcandkk wrote:

> From: tcandkk <tcandkk@...>

>

> A copy of the letter I just faxed....

>

> October 14, 1998

>

> Mr. F.

> N.C. Department of Administration

> Division of Veterans Affairs

> Albemarle Building, Suite 1065

> 325 North Salisbury Street

> Raleigh, North Carolina 27603-5940

>

> Dear Mr. ,

>

> I am contacting you on behalf of my ex-husband, Sarkozy. Before I go on,

I will tell you, no, I do not have power of attorney for him. He has given mr

permission to contact you. You need to be aware of this situation. If I have to

obtain power of attorney to be heard, I will. My present husband and I are

hiring an attorney to represent all of us, including .

>

> I truly hate starting any correspondence in that manner, but time is of the

essence in this situation.

>

> Several weeks ago, we began solving a medical mystery that has plagued not

only myself, but my 14 yr. old daughter, my 19 yr. old son, and , for 12

years.

>

> In 1986, we lived in Burlington County, NJ. Mt. Laurel to be exact. We moved

into a new house, and within a short time discovered we had mice in the house.

We called an exterminator. They suggested using sticky boards, as the children

were young at that time. In retrospect, we now know that type of mouse was the

white footed deer mouse. A deadly carrier of Lyme disease, Babesia, HGE, and

Hanta Virus.

>

> We took no real precautions in disposing of those mice as we caught them. The

only real place I found mouse droppings was in my 's dresser drawers. I'm

sure I vacuumed them up out of our carpeting.

>

> Within a matter of weeks all 4 of us came down with a terrible case of " flu " .

None of us had tick bites we can remember, nor did we initially have the

bulls-eye rash. This is not uncommon, I now know. None of us have been well ever

since.

>

> It had gotten to the point that my daughter, my son and I were all seriously

ill. I was so ill 6 weeks ago that I knew I was precariously close to death.

Coming across an article about Lyme disease I was horrified. Not only were all

my symptoms there, but those of my children. And yes, . We had not spoken of

his health problems, and we only saw each other briefly when he picked up our

daughter to visit. I live in Columbia, S.C. lives in ville, N.C.

>

> Reviewing my medical records, I discovered I had tested positive for Lyme

Disease in 1990, while my husband was still in the Air Force. I was not told or

treated despite full symtoms at that time. Two Dorctors charted my test results

as negative. The original lab report showed positive results. I was sent for

biofeedback. In our own individual histories, we all have had the major

complications of Lyme disease. No one else in the family was even tested.

>

> Within 3 days of my discovery, my children and I began treatment. And we are

responding to treatment appropriately. I immediately spoke with and told

him of the situation. He obtained copies of his medical records for me to

review, and I gave him copies of chronological medical histories of each of us,

along with medical literature about Lyme disease. He was examined by one of the

Internal Medicine staff, a Dr. Armada. He did draw a Lyme titer and other lab

work to rule out several other illnesses. He then made a referral to Infectious

Disease.

>

> Unfortunately, the Doctor for Infectious Disease is off until after the first

of November. is quite ill right now. With any exertion, even in air

conditioning, he becomes severely diaphoretic (sweaty) as if he has jumped into

a pool of water. This definitely is not a good sign. That is exactly where I was

6 weeks ago. He has been having this symptom for months, he has lost several

jobs because of it.

>

> After our bout with the " flu " in 1986, my husband's personality changed. At

that time he was in the reserves, after serving two tours of Vietnam. After

losing his job in 1988, at the age of 42, he managed to get back into the Air

Force. One day he came home and told me he was back in, suddenly I was a

military wife!

>

> Within a year, was told he was being boarded for job incompetence. With

all those years of service, he had a clean record. At this point he was a full

blown mental heath patient as well, due to depression. We sat through several

days of a humiliating board procedure, not being allowed to bring up his

depression or treatment. Needless to say, the ruling went against him. With a

23 year history, he was losing all benefits. Afterward, in reviewing records,

his medical history was discovered, and the board ruling was changed to a

medical board. He still did not get full benefits. The stress of the board

procedure and his illness, resulting in our divorce after 10 years of marriage.

In hind sight, I now know Lyme disease was responsible for his personality

change and depression. His

> depression has never responded to treatment or therapy, nor have any of his

other medical problems.

>

> His patient advocate at the VA Hospital in Salisbury, N.C. was not in last

week due to the death of her husband. Yesterday, I spoke with another advocate,

Mr. Jim Carson. He did not want to speak with me, because of not having POA, but

he finally allowed me to tell him our story. He did a bit of follow-up and

returned my call. This is when we found out the Dr. for Infectious Disease was

not available. I was told to tell him to go through the ER for a medical

evaluation. This morning he went to the ER. He called me after his visit. They

were not interested in hearing about the rest of the family, and decided they

would do some more testing. In late stage Lyme disease, generally the tests are

negative. This is well documented in medical literature. Even the CDC advises a

clinical diagnosis,

> in lieu of positive test results, for patients with extreme symptoms. The ER

refused to treat.

>

> I placed another call to Mr. Carson. By this time was in his office. Mr.

Carson refused to speak with me, telling me that he needed to deal with the

Veteran. is in no shape to fight for his own care right now. Mr. Carson did

however, take copies of the information had with him. My health has

improved slightly, but I am still quite weak and do not need this battle,

either. My illness has resulted in cranial nerve damage, and I doubt I will ever

be able to work as an RN again. I am in third stage neuro Lyme disease. It is no

different than third stage (tertiary) syphilis. Lyme disease is caused by the

same type of organism as syphilis, a spirochete, thus the symptoms are

strikingly similar.

>

> Our lives have basically been distroyed by this illness, and lack of

diagnosis, or treatment.

>

> I have nothing to gain from this. I am not in any way tied to

financially, nor is our daughter. Actually, my present husband adopted

legally, but we left her last name hyphenated with both names. Basically this

was done for 's protection. If anything happened to me, would never be

able to care for her. We are a unique family in that we have blended all parties

to benefit the children.

>

> My children and I are also being tested for the other diseases caused by this

particular mouse. Many people are being found to have a co-infection with Lyme

disease.

>

> The bottom line is that without treatment is a walking time bomb headed

for death. He needs to be treated now. If necessary, we will have him drive to

Columbia for treatment. If we are forced to seek treatment outside of the VA we

will file a lawsuit. He is too weak to be driving back and forth to South

Carolina for treatment.

>

> 's phone number is ********(deleted fir listserv)

>

> Donna Huddleston

>

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

>

[Guest guest]

Marta,

I also sent a copy to Congressman Floyd Spence, of SC naturally. He is the Sr.

Advisor of Veteran's Affairs and Head of Dept of Defense. He has been argueing

againstthe Lyme Bill due to the amount of money they wanted alloted from the

military budget for research. I added a note to Spence as they are now on break.

I invited him to drop by and meet my family as we are too sick to go out. I get

the impression from some things I have read that he does not think about Lyme as

we do not have in cases in our state.....gosh, aren't elections right around the

corner? Guess that is why I got one of his brochures in the mail today....! I

feel my website being put up, herx or no herx...have Lortab will type! I used to

have a pet bird named Herky when I was little, was I having a premonition!?!?! I

have no clue where I came up with that name....

Donna

      

[Guest guest]

Have to laugh about Herky the parakeet...I must say my vocabulary has

certainly increased with medical terms relating Lyme, that I wish I never

heard of.....

If the incidence of Lyme increases as it has been, possibly we will have a

big enough Lobby to vote guys like that Congressman out of office.

Marta

>From: tcandkk <tcandkk@...>

>

I used to have a pet bird named Herky when I was little, was I having a

premonition!?!?! I

>have no clue where I came up with that name....

>

>Donna

>

>

>

>

>

>

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

>

[Guest guest]

Good morning,

I also found it amazing and wonderful that you are working to fight for your

ex-husband's health. Interestingly, my husband and I are now separated and

still work together very well, for our sake and the sake of our children.

However, the person I'm engaged to is also going through a divorce, probably

one of the nastiest in history (our atty. said that in his 10 years of

practicing strictly family law, he has never seen a more difficult case and a

more evil person than my fiancee's ex). It is for this reason specifically

that I have not been actively involved in the discussions here on Lyme-aid.

His divorce is coming to an end and what has been occurring lately has been

more than stressful.......saying it's stressful is a huge understatement. I

cannot believe what this woman has gotten away with and how she is hurting

their children out of her own vindictiveness, anger, and hatred. I will

probably keep a low profile for a while, until my mind returns to something

similiar to normal! Hearing your story brings tears to my eyes because I see

how *some* of us can be adult enough to be " human " and still care for our ex-

es. I wish you and your WHOLE family well. Good luck to you!

Hugs,

Chrissy Ü

In a message dated 10/14/98 11:30:27 PM Eastern Daylight Time,

swsftwtx@... writes:

<< From: <swsftwtx@...>

Dear Donna,

In reading your letter, I want to applaud you and your husband for

going the extra mile to assist your ex-husband, the father to your

children, to get on a road to treatment and better health. Would that

we all acted so humanely and sensibly concerning former relationships. >>

<SNIP>

[Guest guest]

You are so eloquent! Lucky you, to have retained it despite the Lyme.

Let's get some of your letters to the people who can actually DO something to

help the state of Lyme in this country!

For anyone who wants to write or call their elected officials, here's a

hyperlink where you can find out who they are, their phone #'s, e- & snail

mail addresses:

<A HREF= " http://www.vcilp.org/Fed-Agency/fedweb.legis.html " >FedWebLoc -

Legislative Branch</A>

[Guest guest]

In a message dated 10/15/98 1:40:14 AM EST, swsftwtx@... writes:

<< Something is very wrong with America. When we can

spend untold millions or is it billions to find our president guilty of doing

what

a vast segment of Americans also do and also lie about, instead of spending

those same dollars on Lyme Awareness and treatment programs. >>

Your letter was very true, this part especially. I have always been a

somewhat cynical person, but my illness with Lyme, and my inability to gain

disability coverage (both private and SS), has left me with a very bitter

taste in my mouth. I in no way condone what Clinton has done, but give me a

break. There are hundreds of causes in the US that need financial help and

hundreds of situations where the powerful take advantage of the weak (i.e.,

disability insurance carriers refusing to pay benefits) and our government

just waves it to the side. Instead we spend over $40 million and all we have

to show is that he had oral sex with a very willing intern? Think of what

that money could have gone for. Think of all the time and energy wasted on

that. Think of all the media coverage focused on that *single* issue. Think

how all the managed-care bills introduced had to be dropped because Congress

had no time to deal with them. And all of the sick who have lost their life

savings because of how they are treated by the insurance and disability

carriers.

Corporate America runs the government these days, not the other way around.

Another example is the recent individual bankruptcy bill that is about to be

passed. The credit card companies and banks are crying because they are not

making enough money these days (at 18% to 20%, I don't know how) and have

convinced Congress that it is the *consumer's* fault. Not that the flood of

pre-approved credit card mailings had anything to do with consumer

overspending.

I apologize for ranting but I no longer have faith that our government will

*do the right thing*. Now, I don't plan to buy a cabin in the woods and send

multi-page complaints to The New York Times, but it is a sad situation.

[Guest guest]

Would you please add Timwor11 to the lime aid list he is sever late stages of

lyme.

Thanks

Amy