Re: HELP - major relapse, need advice

[Guest guest]

Jessie,

This sounds like a Jarish-Herxheimer. It is when the symptoms get worse

before you get better. This is a common pattern in lyme. It actually is a

good sign, it means that the doxy is working and is killing off the bacteria.

I would go back on it 300 to 400 mgs per day.

Keep a log, you may have more herxes down the road.

Hang in there you can do it. Lyme is a difficult disease to track.

Hugs,

Connie, Michigan

[Guest guest]

Maybe the doxy killed off beneficial bacteria that were keeping pathogens

under control and helping with immune function, and with their absence, the

pathogens are able to flourish and cause illness. The more antibiotic

resistant staph infections become, the more aggressive and toxic they

become, and every time you take antibiotics, you run the risk of creating

antibiotic resistant pathogens. Staph is just one example. But there are

plenty of other pathogens that may not be killed off by doxy, that then have

more freedom to multiply once the competition from beneficial bacteria are

eliminated. And 21 days of doxy may not be enough to eliminate Lyme in up to

20% of people who use it to treat Lyme infections, according to what I

understand. You may fall in that category, and have complications from both

antibiotic resistant pathogens, and a resurgence in Lyme.

lindaj@...

[ ] HELP - major relapse, need advice

> Y'all haven't heard from me because I was feeling just fine for about

> 6 weeks after finishing 21 days of DOXY. Then, last week it all

> started again.

> This time, my symptoms are much, much worse. I have swollen glands, a

> high fever (103, three nights in a row), headaches and everything

> hurts... and i'm exhausted. napping 3x a day at least.

> Why would it get worse? Could it be a new tick bite, or some other

> illness entirely? Ideas?

>

> thanks,

> Jessie

[Guest guest]

i hope to be corrected if i am wrong, i do not believe lyme is associated

with high fevers.

sounds like you got something else

>Y'all haven't heard from me because I was feeling just fine for about

>6 weeks after finishing 21 days of DOXY. Then, last week it all

>started again.

>This time, my symptoms are much, much worse. I have swollen glands, a

>high fever (103, three nights in a row), headaches and everything

>hurts... and i'm exhausted. napping 3x a day at least.

>Why would it get worse? Could it be a new tick bite, or some other

>illness entirely? Ideas?

>

>thanks,

>Jessie

>

>

>

>

[Guest guest]

I usually have a low body temp(below 98.6) When I was really sick with lyme my

normal temperature was 101. I think it depends on persons normal temp.

Just my opinion! Hope this helps.

nellbell

[Guest guest]

It's been my impression that fever is not an uncommon early symptom.

Also, intermittent fevers aren't uncommon, and, further, chronic low

grade fever OR chronic low body temperature aren't uncommon either!

You can also have fevers when you herx. You sound like the classic

case of undertreatment. Get that doc to put you back on doxy

immediately and err on the long side of treatment. If they won't do

it, or only want to do another specified length of time, or if you

relapse again, go find an LLMD, even if you have to drive a long way

to see them. I know that I speak for many on this list when I say

that.

Best of luck.

E.

>i hope to be corrected if i am wrong, i do not believe lyme is associated

>with high fevers.

>sounds like you got something else

I usually have a low body temp(below 98.6) When I was really sick

with lyme my normal temperature was 101. I think it depends on

persons normal temp.

Just my opinion! Hope this helps.

nellbell

[Guest guest]

jessie

You weren't on the doxy long enough. Need at least six to eight wks intially

I heard./

[ ] HELP - major relapse, need advice

> Y'all haven't heard from me because I was feeling just fine for about

> 6 weeks after finishing 21 days of DOXY. Then, last week it all

> started again.

> This time, my symptoms are much, much worse. I have swollen glands, a

> high fever (103, three nights in a row), headaches and everything

> hurts... and i'm exhausted. napping 3x a day at least.

> Why would it get worse? Could it be a new tick bite, or some other

> illness entirely? Ideas?

>

> thanks,

> Jessie

>

>

>

>

[Guest guest]

Doxy is the first drug of choice for a few reasons. Important to you, quite

possibly, is this: sometimes, atleast 3 germs are found in patients bitten by a

tick. Lyme, yes, and ehrlichia, which can be fatal, if untreated. This can

produce your symptoms. Also bartonellas and viruses. There are chronic,

persistent forms that are mild also. I would venture to guess it is the same

bite problems you are now dealing with. I'm not a Doc, though. For me, confusion

of what was really wrong with me, delayed my treatments, and increased my agony.

I hope you go back to a Doc real soon, for a high, and unrelenting temperature

needs immediate medical attention. it does happen with tick bites sometimes,

not lyme, true, but definetely needs ABX treatments. Lymph nodes swelling are a

sign your body is fighting an infection, and so is your temp. I hope you see

your Doc ASAP.

- Original Message -----

From: william meyer

Sent: Monday, July 07, 2003 10:56 AM

Subject: Re: [ ] HELP - major relapse, need advice

i hope to be corrected if i am wrong, i do not believe lyme is associated

with high fevers.

sounds like you got something else

>Y'all haven't heard from me because I was feeling just fine for about

>6 weeks after finishing 21 days of DOXY. Then, last week it all

>started again.

>This time, my symptoms are much, much worse. I have swollen glands, a

>high fever (103, three nights in a row), headaches and everything

>hurts... and i'm exhausted. napping 3x a day at least.

>Why would it get worse? Could it be a new tick bite, or some other

>illness entirely? Ideas?

>

>thanks,

>Jessie

>

>

>

>

[Guest guest]

Also, lyme disease treatments continue for one month AFTER the symptoms have

stopped. (The spirokete has a reproduction cycle).

[ ] HELP - major relapse, need advice

Y'all haven't heard from me because I was feeling just fine for about

6 weeks after finishing 21 days of DOXY. Then, last week it all

started again.

This time, my symptoms are much, much worse. I have swollen glands, a

high fever (103, three nights in a row), headaches and everything

hurts... and i'm exhausted. napping 3x a day at least.

Why would it get worse? Could it be a new tick bite, or some other

illness entirely? Ideas?

thanks,

Jessie

[Guest guest]

Connie: I think that since Jessie has been off doxy for 6 weeks and

was feeling fine on it, this is probably a relapse and not a herx.

E.

>Jessie,

> This sounds like a Jarish-Herxheimer. It is when the symptoms get worse

>before you get better. This is a common pattern in lyme. It actually is a

>good sign, it means that the doxy is working and is killing off the

>bacteria.

>I would go back on it 300 to 400 mgs per day.

>Keep a log, you may have more herxes down the road.

> Hang in there you can do it. Lyme is a difficult disease to track.

> Hugs,

> Connie, Michigan

[Guest guest]

I dont' know how long you had Lyme, but unless you had just been bitten then 21

days is nowhere near enough time to kill it. It probably was hiding deep in the

body growing back to critical mass. Also Lyme has cycles, I can't remember if

it is 4 weeks or 6, but symptoms cycle int hat time frame.

Thanks,

Doris

----- Original Message -----

From: Jessie A.

Y'all haven't heard from me because I was feeling just fine for about

6 weeks after finishing 21 days of DOXY. Then, last week it all

started again.

This time, my symptoms are much, much worse. I have swollen glands, a

high fever (103, three nights in a row), headaches and everything

hurts... and i'm exhausted. napping 3x a day at least.

Why would it get worse? Could it be a new tick bite, or some other

illness entirely? Ideas?

[Guest guest]

What happened to Connie Ford? Or is she the one in Michigan? Why?

;o)

Tammy

> Subj: Re: [ ] Re: HELP - major relapse, need advice

> Date: 7/7/2003 8:49:25 PM Central Standard Time

> From: <A HREF= " mailto:conniek@... " >conniek@...</A>

> Reply-to: <A

HREF= " mailto: " > </A>

> <A HREF= " mailto: " > </A>

> Sent from the Internet

>

>

>

> Don't forget there are two of us........Connie that is

> I use ConnieK (nwnj)

> The other Connie is in Michigan.

> Try to throw the K on for me...........sometimes I get confused..........

> Thanks,

> ConnieK

>

>

>

[Guest guest]

oops! Sorry. Wrong list.

;o)

Tammy

> Subj: Re: [ ] Re: HELP - major relapse, need advice

> Date: 7/7/2003 9:12:49 PM Central Standard Time

> From: <A HREF= " mailto:PLady100@... " >PLady100@...</A>

> Reply-to: <A

HREF= " mailto: " > </A>

> <A HREF= " mailto: " > </A>

> Sent from the Internet

>

>

>

> What happened to Connie Ford? Or is she the one in Michigan? Why?

> ;o)

> Tammy

>

> >Subj: Re: [ ] Re: HELP - major relapse, need advice

> > Date: 7/7/2003 8:49:25 PM Central Standard Time

> > From: <A HREF= " mailto:conniek@... " >conniek@...</A>

> > Reply-to: <A

HREF= " mailto: " > </A>

> > <A HREF= " mailto: " > </A>

> > Sent from the Internet

> >

> >

> >

> >Don't forget there are two of us........Connie that is

> >I use ConnieK (nwnj)

> >The other Connie is in Michigan.

> >Try to throw the K on for me...........sometimes I get confused..........

> >Thanks,

> >ConnieK

> >

> >

> >

[Guest guest]

Personally,

I think she was rebitten. I remember when I was rebitten.

........within days.........I was sicker than I was with the previous bite.

Have extensive testing........talk to your Lyme Doc.

You may need more treatment or different meds.

Or your body is just acting a little funky....(I did after stopping abx)....took

three

months to start feeling well again......drink lots of water, give it a few

days........IF you still feel horrible.

Call your Doctor.

Just my opinion........I'm certainly not an expert.

Conniek nwnj

[Guest guest]

<<<<<I guess sometimes high temps are with lyme...my apologies. >>>>>

I think you are right in that it happens, it just isn't the norm when you are

just

carrying the lyme bacteria.

I always had a fever...........always low grade.......I never had any

coinfections. I

found that true of many with just the BB infection.

I think it depends on the individual........remember fevers are not a bad

thing........It means your body is fighting.

Of course like sweating if the fever never leaves, your body is too

stressed..........and that's not good...either...once can rarely win with this

disease.

Conniek nwnj

[Guest guest]

<<Also Lyme has cycles, I can't remember if it is 4 weeks or 6, but symptoms

cycle int

hat time frame.>>>>>

I believe its 3-4 weeks........and for many women I know it seems to correspond

to

their menstrual cycle.

Conniek

[Guest guest]

Fevers in lyme tend to be " low grade " or not higher than 100. If

getting higher fevers one tends to have lyme plus a coinfection.

[Guest guest]

Hear, hear. That's my two cents too.

Bluesky

> Get that doc to put you back on doxy

> immediately and err on the long side of treatment. If they won't do

> it, or only want to do another specified length of time, or if you

> relapse again, go find an LLMD, even if you have to drive a long way

> to see them. I know that I speak for many on this list when I say

> that.

[Guest guest]

> Connie wrote:

> This sounds like a Jarish-Herxheimer.

Have you ever heard of this happening *six weeks* after stopping the abx?

I'm curious.

Thanks,

Bluesky

[Guest guest]

Don't forget there are two of us........Connie that is

I use ConnieK (nwnj)

The other Connie is in Michigan.

Try to throw the K on for me...........sometimes I get confused..........

Thanks,

ConnieK

[Guest guest]

Speaking as ConnieK from NJ............I had similar symptoms after stopping

abx........that lasted for about 12 weeks...........I felt horrible.........to

this

day.........I am so glad I didn't go right back on abx........I was going

through

withdrawal.from all the drugs.......and let me tell you..........the symptoms

are much

like Lyme symptoms.........add on a compromised immune system..........and you

aren't

sure what the H.......L is happening...........and you really believe its all

lyme

again.......which It could be...........It's one of those things you have to

discuss

with Your Lyme Doctor........and then go with your Gut feelings.

Usually your Gut is right!! My gut told me to stop abx.....my LLMD

agreed.......everyone on the list said continue abx that my symptoms dictated a

still

active infection. The list was wrong.

So discuss it with you LLMD, do a little research, compare your symptoms of now

with

when you were on abx......and then.........GO WITH YOUR GUT ON THIS ONE!! The

List

could be right........but maybe not.

IT could be you need to go back on immediately........but it also could be after

a

week..........you start to feel better.

Only you have the answer on this one.

Conniek nwnj

[Guest guest]

We are all so different..............that what makes curing this disease so darn

difficult...........even our symptoms are not consistent.........no wonder they

can

find the exact treatment that will work for everyone.

Talk about Hit or Miss............I had this Discussion with my LLMD last

week..........I have beaten Lyme Three times from three separate

infections.........she as well as I can't believe it at times.

Unfortunately I battle insomnia, and continued elevated ACE

levels.......indicating

there is an autoimmune disease that wants to take over my body. Though ABX

saved my

live..........it also damaged it along with those darn spirochetes.

Just when I think I have the autoimmune disease beat it

resurfaces...........along

with the sleep problems.....and this week I developed sores...........maybe

LUPUS? I

hope not.

I had four vials of blood drawn at the hospital tonight.

You think you have beaten lyme.......you feel great and then you have to battle

with

the aftermath.........THIS IS ONE F>>>>>>>>>>>> HORRIBLE

>>>>>>>>DISEASE..........I'm

sorry I am so angry tonight..........I just can't believe these sores.......it's

repulsive!!!

Conniek nwnj

[Guest guest]

i can see nothing in our original posters message that indicates his

recent fever is due to lyme.

everyone is jumping the gun on this.

chill out and quit ascribing evrything to lyme

--

best

william meyer

[Guest guest]

Went to the DR - she thinks it is Ehrlichiosis, not lyme. I had a

104 fever all weekend and felt like DEATH.

Might end up in the hospital next week from complications (breathing

is tough).

> i can see nothing in our original posters message that indicates his

> recent fever is due to lyme.

> everyone is jumping the gun on this.

> chill out and quit ascribing evrything to lyme

> --

> best

> william meyer

[Guest guest]

Dear Jessie, so sorry you are so sick. I am thinking of you. And glad you went

to the Doc. Ehrliciosis can be deadly serious. Make SURE you have extended

antibiotic medications. Please make sure. I am suffering every day. Dear lady!

Best of recovering to you.

[ ] Re: HELP - major relapse, need advice

Went to the DR - she thinks it is Ehrlichiosis, not lyme. I had a

104 fever all weekend and felt like DEATH.

Might end up in the hospital next week from complications (breathing

is tough).

> i can see nothing in our original posters message that indicates his

> recent fever is due to lyme.

> everyone is jumping the gun on this.

> chill out and quit ascribing evrything to lyme

> --

> best

> william meyer

[Guest guest]

Jessie: I think most of the meds used to treat ehrlichiosis can

treat lyme as well. Don't quote me on that though. All of the drugs

used to treat lyme are not effective against Ehrlichia though. Doxy

is the classic first line Lyme treatment because it can be effective

in early lyme, but also because it can be effective against Ehrlichia

as well. If this is the doctor that originally diagnosed you with

lyme and subsequently undertreated you, that sends up a red flag to

me. What symptoms make her think that it is now Ehrlichia? It is

not uncommon for Doctors unfamiliar with these diseases to rule out

lyme after an inadequate treatment, but unfortunately standard,

treatment just because they think that 21 days is always adequate. I

know, it happened to me. There is also Babesia against with lyme

drugs alone are not effective. Both diseases, and more can, and

apparently commonly do, appear as lyme coinfections. I'm not

doubting that you could have Ehrlichia, and maybe you only have

Ehrlichia, but you should be seeing someone who sees patients with

these diseases everyday and knows how to properly diagnose and treat

them so that you don't end up in the hospital or like the rest of us

here haunting this list. Most LLMD's are likely to be reasonably

equipped to deal with other conditions, but other docs are NOT well

equipped to deal with lyme. In fact, they are usually grossly

MIS-informed, and the likelihood of misdiagnosis and or

undertreatment are high if dealing with tick bourne diseases.

And : Jessie didn't give us a lot of history there, but

assuming a previous diagnosis of lyme, which admittedly may be

questionable, and returning symptoms, this appears to be a classic

case of undertreatment relapse as experienced by me and undoubtably

lot's of others on this list. It would also appear that the Doxy was

probably effective on whatever it is. No, not for sure, but, in my

opinion for what it's worth, probably. To me that says back on doxy,

and if tick bourne diseases are suspected, find a specialist.

E.

>Went to the DR - she thinks it is Ehrlichiosis, not lyme. I had a

>104 fever all weekend and felt like DEATH.

>Might end up in the hospital next week from complications (breathing

>is tough).

>

>

>

>> i can see nothing in our original posters message that indicates his

>> recent fever is due to lyme.

>> everyone is jumping the gun on this.

>> chill out and quit ascribing evrything to lyme

>> --

>> best

> > william meyer