Re: is there hope out there?

[Guest guest]

Dear K-

I am pretty sure I know whom you are seeing, my sister and her family see him

too. I will tell you from what I understand and that is this dr. does not

believe in the co-infections of babesiosis and ehrlichiosis. My

brother-in-law and sister I KNOW have them. (we are addressing them now). My

suggestion, and again from personal experience, is to get tested by a PCR

blood test from Igenex labs in CAL for the co-infections. I was treated for

approx. 2 yrs. and kept complaining that if I stopped the abx, my symptoms

would come right back. I could not understand why!!!! Finally, I understood

the co-infections, was tested, came back positive, have now treated them and

am almost done. Also one must understand when you have lyme, antibiotics are

not the only treatment there is. One must do alternative remedies too. I

believe and again from personal experience that one has to do alt. methods. I

have a rife machine, have done 'natural' supplements, increased exercise

(oxygen intake and internal body heat which these spirochetes hate), massage

therapy, accupuncture, etc. This is a whole body experience.

Just a suggestion.

sue in nj

[Guest guest]

I too at one time thought it was all useless.After 2 1/2 years of treatment

I feel much better but am unable to come off meds.I asked my Doc Friday was

there any hope and did he have anyone who was chronically ill ever come off

meds and do good.He said he had one patient he has treated for 4 years now

off meds with no symptoms for 4 months.This gave me the hope I needed.I do

believe there is an end just dont know when it is.I have had this all my

life but was not diagnoised until 1998 after being very ill.Since my mom and

girls have Lyme also we believe it has been passed on from birth.Just keep

fighting for yourself and your family.It will happen.Much love Janet

>From: " Kelty Kelley " <keltyk@...>

>Reply- egroups

> egroups

>Subject: [ ] is there hope out there?

>Date: Sun, 31 Dec 2000 19:21:21

>

>Hello All-

>I have been subscribing for a while now, but I do not always have time to

>read the posts, but when I do, I always learn something.

>I have been dx'd and treated by a Boston LLMD for 2.5 years now (think the

>disease has been present for 15 years)--I have my second central line, this

>time for Vancomycin. Yet I continue to " decay " --I am very discouraged and

>am

>hoping to hear some encouraging stories or other treatments that may be

>more

>successful with a very stubborn case--I have tried Tetracycline(3 different

>cycles), Biaxin/Plaq(two different cycles), IV Rocephin(1 cycle--8 weeks),

>and now the Vanco (in Feb will be 3 months)--Has anyone tried Physical

>therapy to rebuild their strength--I am so weak and sore I often if my

>inablity to function is making it worse.

>

>I do have 3 children under 10 and very supportive husband and familiy--but

>I

>am beginning to wonder if this really is treatable--MD says his is not

>willing to give up yet--any feedback would be greatly appreciated!

>

>K

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[Guest guest]

Hi Kelty,

There is hope out there! I have been in remission almost three months

now.........(not a long time I know) but it feels great to not have all

those terrible, debilitating lyme symptoms. I went through a little over

five years of different abx, including oral, injections and

IV..........until finally IV Rocephin, followed by IV Zithromax & Oral

Tinidazole........that I experienced a relief from almost all my symptoms.

I've returned to doing so much...........its nice to have my physical life

back again. Unfortunately, I am still plagued by disturbed

sleep............waking some nights as many as 10 times...........I have to

use sleeping meds so that I can get enough sleep to function

normally..........this sleep problem has caused a deep

depression........that makes life very difficult..........I don't know which

is worse, this depression, or the horrible physical/mental symptoms of

lyme............I'm holding on to the fact that my other symptoms are in

remission that this too will correct itself..........I hope so.

I really think that putting yourself into remission, is so individual, and

very trial and error.........one day, you will have found the right

combination.........or perhaps, all the different combinations you have been

on has killed off all the different strains of the bacteria in your body (I

believe we are all carrying various strains.....and that switching to

different abx, kills off different strains).........until one day......our

bodies can suppress the remaining strains....and we can function

again.......Kind of where I am at........I am very cautious about overdoing

it..........because I don't want those remaining strains to overpower

me........I can almost tell, when I have done too much..........and I

immediately rest...........so I can be in charge!!

As far as physical therapy, I can't comment......I haven't tried that. I do

walk now and do some stretching...........and I feel I am getting stronger

each day...........I only wish I could beat this depression thing........I'm

taking 900mg of St 's Wort daily in hopes of avoiding going back on

Prozac..........

Hang in there, You will get better.............it takes time

Connie nwnj

Leave no stone unturned.......

[Guest guest]

Don't give up!!!!!!!!!! There is hope.. You need to believe that!!! I went

through Hell for awile.. (In bed for 18 months) Then sick another year

working only 4 hours a weeks.. Last week I was able to work 25 hours!!! I'm

doing SSSSSOOOOOOOOOO much better!! You will too.. Just need time and

medicine..

Feel better,

[Guest guest]

, sue from NJ and Connie

Thank you for the words of encouragement and for " hope " ! I have really

tried to remain so positive, but lately I am just discouraged--been avoiding

seeing any more MD's--sick of them for a while. I just made an appointment

with a local Chiropractor who is said to have " healing hands! " Two different

people who did not even know eachother both recommended him to me--I am

waiting to confirm a date with his office.

Thank you again and I am so glad that you are doing relatively well--I just

want to be able to walk around the block with my kids and to ride my bike

again with my husband!

I keep praying and teaching everyone I come in contact with about this

horrible disease!

Kelty

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[Guest guest]

Isn't that funny, I tried to dig deep to give you hope and can't find hope

for myself anymore.........I've been in complete denial.........I refused

to believe my lyme was coming back........and the truth is.........its

back....as each hour passes I wait for a returning symptom.........sleep

disturbance, eyes problems, fatigue, ..........it won't be long.......

Leave no stone unturned.......

[Guest guest]

In many ways I find that I have been doing the same, tring to find any hope,

for my family--it is kind of strange, but that seems to keep me going!

Thanks for the effort!

Kelty

>

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