Helping Patty

[Guest guest]

Patty,

I am forwarding your message to Marta, who

manages lyme-aidonelist

and all of the people that are on the list.

Patty's message is at the end.

This is a support group list that helps each

other a lot and some may have even seen

your doctor. It is a private support list with

good information to get some of the answers

you seek. I think you go to

/ and register, for

lyme-aidonelist

If Marta or anyone can add to or correct,

please do!

This is a free service and I think joining may

give you some help. There is also another

list you can get on for younger people, but

you may want to see how this goes. I am

sure some of the people from the list will

see your message below and send you links

to some of the good Lyme sites.

It is hard to get over the notion not to take

lots of pills to make you feel better. None of

us want to be on all the medications,

especially the strong ones for pain. If someone

does not have Lyme Disease, LD, then they

have no concept of the pain and exhaustion

we feel most every hour of the day. As a nurse

I had to encourage my patients that were in

pain to keep a therapeutic level of the pain

medication in there body and that meant

dosing pretty much around the clock every

4 - 6 hours. Some doctors can't even accept

this concept. If you are sleeping through the

night, don't wake yourself up for a pain med,

but get all the good sleep you can.

Does the Motrin help you? If you have breakthru

pain take a Darvocet and see if that helps.

Those warm baths and showers help.

Yes, antibiotics can make you feel yucky and

much worse thru your menses. We seem to cycle

while on the antibiotics and become a little worse. There is also

something called Herxing, that

makes us feel worse when we cycle also.

If you join the list you can show your mom

what many of us go through and perhaps

she will understand this Lyme Disease a

little better. (How old are you if I may ask?)

You need to talk to your doctor about trying

a different pain medication if what you are

taking is not helping. I hate taking the stronger

ones also. But I could not function on over the

counter ones. Sometimes I do have days when

I don't need so much, so I try just plain tylenol.

I also take a muscle relaxer, flexeril, during the

day, especially during my menses, which helps

the cramping and spasms of the muscles.

I usually take one at bedtime to help me sleep

better along with a sleeping aid. Rest is so

important so if your sleep is not good talk to

the doctor about that.

For everyone the battle with Lyme Disease

is a little different. It is so dependent on your

immune system. It depends on whether you

have just LD, the Borrelia burgdorferi bacteria

(Bb) or have other co-infections along with LD.

Lyme may cause: pain that seems to hit one

place, then will move on to another and may

spread into joints and muscles causing stiff

neck joint pain, sleep problems, exhaustion,

tingling & numbness in various places, usually

the extremities. Also emotional liability, 9 one day feeling

depressed, the other angry.) Later,

confusion and difficulty with thinking and

thought processes, forgetfulness, and so much

more. [Note- some of us don't have all these

problems, come on slowly and gradually over

a long time period.]

Researchers are finding some people are

co-infected with:

1. Babesia microti, (IFA) a protozoa type

co-infection that infects erythrocytes, (or our

Red Blood Cells), (RBC's), Causes fever,

sweats or chills, malaise or fatigue, headaches,

whole body aches, emotional liability, nausea

and vomiting sometimes, weight loss,

(but remember some meds make you gain),

hemolytic anemia, (destruction of red blood

cells), thrombocytopenia, (various causes of thrombocytopenias -

failure of production

of red blood cells, increased destruction of

RBC's, INFECTIONS), Transamintis, levels up

or down, LDH, , levels up or down, T. bilirubin sometimes

increased from liver problems, {transamines, LDH, increased

values, are

indications liver cells have been damaged

and these enzymes are released.}.

We also can have memory problems, Kidney

problems. And remember, not everyone gets

as bad as the next person because the immune

system & antibiotics are working against the bad organism.

2. Erlichia chaffeensis called Human monocytic

erlichiosis - (HME). Causes symptoms similar to

HGE.

3. Ehrlichia, human granulocytic ehlichiosis - (HGE).

Signs and symptoms; fever, malaise, headache

and myalgia. (Aches all over.)

New treatments are being tried for these. There

are only a handful, if that, of labs that can test for these

co-infections, or LD. Some of the doctors working on finding the

right combination of medications that kill the Bb, a spirochete

bacteria, (coil shaped), and the other co-infections, believe you

have to kill the co-infection first,

then treat the LD. Most all agreed at the last conference I was

at, that you need a combination

of antibacterial agents to hit the Bb in the different

forms it is in, and also to prevent all of the above organisms

from developing a resistance to the infectious agents listed

above.

There is research going on that is pointing us

in the direction of what needs to be done. Some

people have taken antibiotics for a shorter period

of time then some of us who have been at it for a

few years. Some get a lot better quicker then

others. Hopefully treating the co-infections and

the LD will get us all better real soon!! Take this to

your doctor and don't be afraid to ask him questions.

So much is new in treating LD and we still have so much to learn.

Me included!!

Sincerely,

Barb Fitzmaurice - MI

blfitzma@...

*************************************************

Re: we have to hurt before we grow

thank you for responding. Since the antibiotics I am having a

hard time. I take darvocet as needed and he just added motrin 800

3 times a day and trazadone and melatonin at bedtime. My

family especially my mom says I shouldnt take stuff but god I try

not to but I honestly cant take it. How long does this go on

after the antibiotic. I do have a good LLMD Dr Swaimi in Pa. Is

it unusual to feel this bad after 2 weeks of doxy?? They feel i

was infected in 91.Plus i am getting my menses which always made

my symptoms worse to. I go to see him again on 12/7 he is

starting me slowly out on antibiotics because my insurance is

denying me an out of network referal and my primary doc in ny

orders everything DR Swaimi wants but Dr swaimi wants to " feed

the cat slowly meaning my doc in NY " I couldnt imagine being on

anything stonger.. Patty --