Poisoning has begun

[Guest guest]

Well, I'm on my fourth dose of poison (Quinine and Cleosin) to get rid of

the Babesia. So far so good. I don't know at what point to expect

anything. The only thing I was warned about was severe headaches but I

have headaches anyway. I hope they just roll over and die. I sure hope

this was the reason I couldn't get rid of the Lyme. I also hope this is

the reason I can't walk very far. I keep getting up to see if I can walk

now. My mother says I'm going to wear myself out and won't be able to

tell any difference.

I would suggest that everyone with long term Lyme who wasn't checked for

other tick borne diseases get checked. I was sure surprised to find out

I had Babesia after 11 years of thinking I just had Lyme.

An aside to . Night sweats are also a symptom of Babesia. When I

think of all the drenching sweats and fevers I went through and described

to the ID and he had no clue, it really makes me wonder if they learn

about anything but aids, anymore.

___________________________________________________________________

You don't need to buy Internet access to use free Internet e-mail.

Get completely free e-mail from Juno at http://www.juno.com/getjuno.html

or call Juno at (800) 654-JUNO [654-5866]

[Guest guest]

, Hi I am just finishing my 3rd week of treatment for babesia, and I am

not a confirmed lymie, but did herx while taking doxy, which my doc had me

stop to treat the babesia. I am on mepron and zithromax. I have had some

night sweats, but nothing major, and have never had high fevers, makes me

wonder if my babesia test was accurate. I have suffered some major depression

while taking these meds, but am not sure if its related. Do they test you

after each reg of medication? I am still very curious about the whole babesia

thing. Will you let me in of some of the things your doc feels have been

caused by babesia? I am having alot of chest pain, and I'm not sure if its

lung related or heart related, but figured if it was lung that the mepron

would take care of it. Any suggestions?

Thanks Hope you are feeling better

Amy

[Guest guest]

Amy,

I also have a lot of chest pain. My chest pain is inflammation around the

heart. So it is muscle and not my heart. The doctor said this was common in

lyme patients, esp young women. The doctor tested me to make sure my heart

was OK. He put me on lopressor which help my pains and palpation's.

Hope your feeling better,

[Guest guest]

Hi Amy, I don't know which is Babesia and which is Lyme, exactly. My

doctor didn't seem to think I had anything but left over Lyme and seemed

surprised to discover the Babesia. I hadn't even told him about the

drenching sweats and high temps because they happened so long ago and now

I only occasionally wake up sweating and my temp is usually very low. I

do have chest pain and joint pain and headaches, etc. but I don't know

which to blame on what. I find that when I go to a new doctor and start

giving a list of my symptoms that the doctor is either totally

overwhelmed or looks at me like I'm some kind of lunatic so I try to

start off slowly and add symptoms as I go along. This doctor sneaked up

on me with the positive test by the second visit. I'll let you know when

I sort them out.

On Tue, 8 Dec 1998 21:52:54 EST A1M1BISHOP@... writes:

>From: A1M1BISHOP@...

>

>, Hi I am just finishing my 3rd week of treatment for babesia,

>and I am

>not a confirmed lymie, but did herx while taking doxy, which my doc

>had me

>stop to treat the babesia. I am on mepron and zithromax. I have had

>some

>night sweats, but nothing major, and have never had high fevers, makes

>me

>wonder if my babesia test was accurate. I have suffered some major

>depression

>while taking these meds, but am not sure if its related. Do they test

>you

>after each reg of medication? I am still very curious about the whole

>babesia

>thing. Will you let me in of some of the things your doc feels have

>been

>caused by babesia? I am having alot of chest pain, and I'm not sure

>if its

>lung related or heart related, but figured if it was lung that the

>mepron

>would take care of it. Any suggestions?

>

>Thanks Hope you are feeling better

>Amy

>

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

>

[Guest guest]

Read about your chest pain and thought I'd relate some info I

just obtained. I had a test of my gall bladder after the sonogram

was either inconclusive or the doctor wanted more information,

I can't remember. He ordered a second test where they used

an IV with radioactive stuff for contrast. The 1st half of test was

checking everything again, and not just the gall bladder. The second

half the IV was injected with cytokines (sp?) to " stress " the gall

bladder. It did just that. I was in major pain for 15-20 minutes.

I was most surprised to find out that once the IV was injected

and the stuff hit my system that my chest and ribs went crazy with

pain, something I've had on and off since at lease 1993 if not sooner.

Almost exactly duplicating the pain that woud take me to my knees

and even with limited pain medications and heating pad clutched to

my chest, I would cry myself to sleep because of the pain.

I don't have any answers, I am due to return to the doctor today

at 10 am to hear what the tests showed. So will share it with you

when I can, but thought I'd bring it us as a possibility too. With the

amounts of abx we are on for Lyme, even the best of gall bladders

might get overloaded.

Wishing us all health and freedom from pain,

both physical and emotional -

A1M1BISHOP@... wrote:

> From: A1M1BISHOP@...

> I am having alot of chest pain, and I'm not sure if its

> lung related or heart related, but figured if it was lung that the mepron

> would take care of it. Any suggestions?

>

[Guest guest]

Dear Amy,

Just read your post. Sorry guys that I didn't delete Amys post to write

mine

but I'm very sick now. Just began IV meds 5 days ago and can't think straight--

major herx. Ok, Amy, I was diagnosed with babesiosis just this past March but

was

diagnosed with Lyme over 6 years ago. I had 4 different times on IV meds (this

is

5) and took more orals, shots, you name it to kill anything else except this

damn

thing. I worked with Lyme patients and have had to deal with 4 of us with Lyme

in

my family over 10 years. I thought I knew a lot. I'm an RN and have seen it all.

BUT, even I didn't know I had babesiosis till THIS YEAR and probably had it all

along. I too had the IGG/IGM babesia test sent to Igenex. I'm thinking that that

might be what you had done? My IGM was 1:80, so was my IGG. MOST doctors think

that isn't " high " enough for us to have it. WRONG. I had low grade fevers,

episodes of sweats, felt terrible and my red cell counts are low---babesia kills

red cells (like malaria). That CAN be a symptom. I'd bet you do have Lyme. Did

you

get tested for ehrlichiosis? Yes, I did get labs done about once a month while

on

Mepron/Zithro. I have had 4--- 3 week rounds of Mep/Zith with one week off in

between rounds. My LLMD says he has to try and get rid of the babesia first

because it is harder to treat the Lyme if the babesia is active. I also have a

positive babesia PCR. You don't HAVE to have that to have babesiosis. That just

really positively absolutely means that it is in you. Sounds like you are being

treated well. Remember, doctors have only been trying to figure out how to treat

" co-infections " for just over a year. Babesiosis and ehrlichiosis present

differently when you have Lyme. They may not make you deathly sick---very high

temps/babesia-- like most docs are taught The thing is, you CAN have one or both

or even other " co-infections " with Lyme and even if they " act " differently than

they would if you JUST had one of them without Lyme, it doesn't mean that you

don't have to treat it. Many of us who never seem to get better and are always

sick have finally found that we have any one of th other tick-borne

diseases--and,

it is getting very common. Even the BEST LLMD is fairly new at this. Mep/Zith is

THE tx of choice. Clindomycin and Quinine makes most people very sick and can

cause hearing problems. That is what a lot of docs still want to treat

babesiosis

with. Mepron was really developed first to treat aids patients for a common lung

disorder they get but doctors have found it seems to help treat babesiosis, a

parasite, but some " old school " docs are scared to use it because it wasn't

" approved " for tx of babesiosis. Here we go again! If you feel worse (my doctor

says usually on the " week off " after 3 weeks on the Mepron, you can feel much

worse) I know a lot of people who felt terrible on Mepron. I tolerated it pretty

well and so do a lot of us. YOU are YOU! About the lung and heart thing--I hope

you've had an EKG and I'm sure you've had your lungs listened to. Just ask your

MD

ALL these questions. Are you on an antidepressant? Lots of us are. VERY common.

I

was skeptical too about anything helping me but I have had improvement with

Mep/Zith. See, my Lyme really got worse while we were trying to treat the

babesiosis. I crashed big time but that can happen. Now, I'm being aggressively

treated for the FIRST time for Lyme AFTER being aggressively treated for

babesia.

Make sense? I HOPE this time I can feel better and stay better for a long time.

Amy, you can't go by anybody else. I have very late stage neuro Lyme, babeiosis

and ehrlichiosis and the stealth virus. You have to go by how you feel and

follow

your gut. My LLMD is great. If I forgot to address some of your questions,

please

ask. I hope I helped a tiny bit. Take care of YOU. I'm pulling for you! Hi to

everyone else. Hope some of you are feeling better today.

Your friend,

Helen

A1M1BISHOP@... wrote:

> From: A1M1BISHOP@...

>

> , Hi I am just finishing my 3rd week of treatment for babesia, and I am

> not a confirmed lymie, but did herx while taking doxy, which my doc had me

> stop to treat the babesia. I am on mepron and zithromax. I have had some

> night sweats, but nothing major, and have never had high fevers, makes me

> wonder if my babesia test was accurate. I have suffered some major depression

> while taking these meds, but am not sure if its related. Do they test you

> after each reg of medication? I am still very curious about the whole babesia

> thing. Will you let me in of some of the things your doc feels have been

> caused by babesia? I am having alot of chest pain, and I'm not sure if its

> lung related or heart related, but figured if it was lung that the mepron

> would take care of it. Any suggestions?

>

> Thanks Hope you are feeling better

> Amy

>

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

>

[Guest guest]

Helen, thanks for the info. I have not been tested for Eri or sheath virus

yet. I am running to the docs at 8 am tomorrow morn to have her listen to my

lungs, she said she is gonna order an emergency chest xray and may do an emg,

along with thyroid test. She feels that if it were a resp problem that the

mepron should have taken care of it. I actually felt light headed today and

very weak in the arms and legs, kinda scary. I had a positive PCR from Igenex

and have had 3 reactive bands show up on my western blot, which was sent to

Stoney Brook. I feel that I have neurological lyme, and that it may be late

stage. My doc says he is gonna give me a week off the mepron and zithromax,

and then put me on doxy again. Don't know if you have heard of him his name

is Dr Butchma and he is in Manhassett NY, 10 hrs from me by car. I hope you

are feeling better, sounds like lyme has been really cruel to you and your

family. I really appreciate you taking the time to write me. If you come up

with anything else, or need an ear let me know

Thanks So Much for the Love and Support

Amy

[Guest guest]

, interesting, my temp tends to run low. Thanks for the info, I'll let

you know what my MD comes up with.

Take Care

Amy

[Guest guest]

Rob, hi just wanted to let you know that I have babesia, and run low temps,

interesting isn't . Take Care

Amy

[Guest guest]

The only reason why my dr. tested and suspected for Babeosis is

because I had severe high fevers out of the blue with no sign of

infection ot other problem causing it. Fatique and other symptoms

simuliar to lyme are the case fpr babeosis but truely there is no

definate way to tel except testing. My dr saind that very high fevers

that were very uncharacteristic were suspicious but I have recently found

two friends who recently got diagnosed with Babeosis without having no

high fevers so I guess sometimes as always the rules can be broken and

don't always apply to every case and we need to be very careful because

of this.

Rob

'Songman' LIptak

[Guest guest]

Inderal also helps the palpitations and the pain. In fact, some doctors

are choosing to go this route for what we call " anxiety attacks " as

well, since its hard to figure out which comes first, the palpitation or

the panic.

Alison

--

[Guest guest]

Amy,

Did your doctor ever consider 's Syndrome? It appears to be common

among Lyme patients and of course, low temps is one of the tip offs. My

normal temp is in the 95.8-96.8 range. I am taking Armour thyroid to

counteract the low temps. It isn't the most successful treatent but what

we need isn't on the market yet. And it does help somewhat!

Alison

--

[Guest guest]

>

>From: A1M1BISHOP@...

>

>Rob, hi just wanted to let you know that I have babesia, and run low temps,

>interesting isn't . Take Care

>Amy

>

>-

HI Amy,

Even when I had my very high fevers my temps flucuated very severely. I

had temps ranging from 103.5 the highest to the lowest I think was 96.5

talk about a tempature swing, Well As my Dr admitted when she first found

I was positive. They truely don't know alot about especially what long

term effects can be when most people will have had it for many years as

in your case and mine. It will be the norm until Babesia is tested in all

new patients and is a standard. The long term effects I would truely like

to know but how do you even begin to tell what is long term from babeosis

or lyme when problems can be simuliar but when it come to a stage of it

being a complication or damage I guess the point is moot since what is

done is done. I would like to know what role Babesia played in possibly

speeding up the process where my PTC became a complication within months

when people who even had PTC caused from Lyme have the condition reversed

even after more years that I have had it. I know it is a fact it is

pernament beyond a doubt with the abx protocol I have been on.

Take Care,

Rob 'Songman' Liptak

[Guest guest]

Dear Amy and group,

I too am on armour thyroid. I was wondering what the medication you were

referring to , that is not on the market yet.

Has anyone lost weight while on Armour thyroid?

Also, someone wrote about adding a compound that her dr prescribed in

additiion to the Armour. Does anybody know about that?

Thanks to everyone,

KAREN

[Guest guest]

,

The medication that is needed to treat this problem is a straight T4

thyroid medication. Most medications treat T3 and T4. My doctor told me

that the T4 is being worked on but is not yet on the market.

As for weight loss, not from the medication alone. After gaining a LOAD

of weight my doctor suggested Atkin's Diet, what she describes as the

diet of choice for Lyme patients. I am having a moderate amount of

success with it and will happily take it!<G>

In fact, she and I are doing battle as we speak because she switched my

IV abx back to Doxy last week and it was delivered in Dextrose. Since

you need to be totally carbohydrate free for Atkins to work, I told the

nursing company that I would not use it in Dextrose and so they called

the doctor, whose office called me to tell me it would not interfere

with the diet but I am terrified that it will! This diet is the only

semblence of control I seem to have over ME right now, everything else

going on in my life is out of my hands (Disability, Lyme symptoms, my

lawsuit, etc) and it is really important to me to feel like I am doing

something positive for ME...so this has been a torturous week...but back

to thr original point of your note-you won't JUST lose weight from the

Armour Thyroid!

Alison

--