the Lyme Clinic @ UCONN. I have had a

yearly battle with it ever since; every

summer after my first tick bite when I am

out in the fields I get sick. Never had

more then 30 days antibiotic. New

Infectious Disease Doc is telling me that

with all negative bloodwork I do not have

nor have I EVER had Lyme. I got sick this

year about June 1 as always and today I am

sicker then ever. I took 30 days of doxy

which did nothing. I am going back to the

Doc tomorrow and would like advice on how

to handle this next visit. I have severe

nuerologic symptoms, joint pain, sweats,

chills, forgetfulness, tingling in my mouth

(like novacaine), headache, and I am

fatigued, weak, scared and miserable. I

know I need IV antibiotics at the very

least. This IF Doc says she thinks I have

Rhuematoid Arthritis (Negative for RA Factor

but that doesn't seem to matter. After 15+

years of recurrent Lyme I probably do have

RA, it is in my family and my clinical

picture supports that. Important note, I

have had positive Western Blots in the past

but my regular blood always comes back

negative. I have an additional job besides

farming and while my boss has been kind and

supportive, being out of work for over a

month with no end in sight is not fair to

them or me. It is impossible for me to

work, I can barely get up in the morning.

Thanks everyone!

------------------
Deb :>)

Click on support groups in left side green menu box on this page.

The FDA has issued at least two advisories saying that lyme is a clinical diagnosis, not to use blood testing as the last word. This is because testing is very iffy.

Sorry you are having a hard time getting your doc to hear you out. That has happened to lots of people here.

I agree with Lou. I think you must seek out a new doctor, if this one is unable to see that lyme should be diagnosed using a symptoms list with the blood work only sometimes able to confirm what you already know by symptoms.

You see, the testing that is available is not so accurate and it takes a lyme literate doc to see when he or she has a lyme patient sitting in front of them.

Some people that have lyme never get a positive test result back because the bacteria has ways of hiding itself, therefore confusing your immune system.

Your immune system doesn't recognize the bacteria in some of these forms (such as cyst form and L-form, no cell-wall form), therefore your body doesn't produce the antibodies that some testing would be looking for to confirm it's presence.

Wow, I cannot believe that even with a positive Western Blot your doc doesn't think you have lyme! My daughter's lyme literate nurse practioner was accepting of the positive Western Blot as a confirmation of diagnosis.

She was pretty sure on her own instincts already that it was lyme. As I said before, these docs that are used to seeing it over and over again, know exactly how it presents itself.

Might I add that the CDC says lyme is a clinical diagnosis, using blood work to only aid in the diagnosis. Here is what they have to say on the subject of diagnosing Lyme (read under B.Burgdorferi and Diagnosis):
http://www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm

Deb, please take care and keep coming here to ask questions. There are a lot of people that know much more than I do, here!

Here is that bunch of info that Lou was talking about:
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

You can also find it on the medical posts list page 1 or 2. I moved it up for you.

Let us know how that doc appt. goes tomorrow!

I know I am going to get a lot of flack
for this -- If you cant get docs to
help you --get your Vet to help you--
If I was a farmer and docs where not
helping me--I would not hasitate a
second to get help from your vet--
I bet your vet sees lyme all the time.

All the vets I have met were Much
smarter than the docs I have met.

30 days of doxi is not near long enough--
It was about 4 months on 600mg doxi
before I could feel any diffrence--
Many ups and downs-- but the ups
are starting to get more frequent.
Joint-muscle- pain mostly gone.--

Sounds like you are a tuff person--
and have been through alot--
lyme will wear you down--it did me.

If you get doxi--dont eat any citrus
at all--none--it can make the Sun Burn
reaction Much Much worse--even small
amounts of citrus can cause this effect.
May also be the case with Mnocycline.

Do a search on my posts--I cover
the doxi and glucosimine in depth
in several-- Good Luck to You--Jay--

answers! Jay, your post made me chuckle

because I am a lay veterinary homeopathic,

herbal and reiki practitioner and I agree

with you BIG TIME! I work closely with a vet

and he has been invaluable help. I am very

familiar with glucosamine because I

prescribe it all the time and I do take it.

Another thing that helps immensely is MSM

in a large dose. The problem is that

nothing is working as it should and I think

I may have a co infection or something has

changed with my recurrent problem. I am

mortified at the medical community and I am

about ready to take matters into my own

hands. I was hopeful to get IV therepy

which is the only reason I actually went to

a real doctor. I am afraid it has been a

waste of time and I will simply have to take

care of myself as I have in the past. My

bloodwork is a mess, however it is not a

mess with any rhyme or reason, it makes no

sense at all. I cannot believe how sick I

am, I have been off the doxy about a week

now and while it didn't help much while I

was taking it, it did do something, because

now I am sicker then when I started and man

do I hurt! I have sent this infectious

disease doctor email with all the research I

have done, shared my and Skips veterinary

findings and included stuff from the links

you nice folks provided. I suspect I may

have simply wasted my time. I can tell you

in horses and dogs we have treated, we have

seen some very strange things where Lyme is

concerned. My own dog was lost last month

due to Lyme which went into his brain and

spinal fluid, putting him in extreme pain

and causing him to loose the use of his hind

leg. He went to bed fine and woke up sick

and lame. The leg he lost the use of;

atrophied in about 3 weeks so fast and to

such an extent that it was amazing. Skip

and I had never seen anything like it and we

have been at this for a number of years. I

felt terrible because nothing we tried

conventional or alternative worked to save

him. I got sick about 2 weeks after him. I

have seen Lyme do some pretty terrible

things and I think it is deplorable that

people are not being taken seriously. I

appreciate having all of you to talk to and

help me. It is one thing when you are well

and sorting something like this out but is

something altogether different when you feel

so bad and then have to take charge.

Incidently I initially was seen by a doc

from a different hospital and she put me on

antibiotics in the first place, but then

said it couldn't be Lyme because I didn't

get better and that is how I ended up at

this new doc. Jay you are right, the

veterinary community is taking this problem

much more seriously and acting much more

aggressively. Thanks Again!

------------------
Deb :>)

I just saw my first LLMD earlier today, and I had a postive Western Blot, but even without he would have diagnosed me with Tick Borne Illness he said.

I have already achieved 95% remission, but just like you, in the spring and worsening by about June I relapse. To a much lesser degree, but symptoms of all kinds return. I had suspected it was allergies, because it happens like clock work every year.

My doctor believes that I am right in my assumption. I am gaining ground, getting the upper hand but when allergies hit it seems to overwhelm my immunse system and I loose ground. One trick I have found is taking an antihistamine like Claritin. It isn't a cure all, but in my case it definetly seems to reduce pain and fatigue, helps a bit with the congnitive and nuero stuff.

symptoms seem to be moving around my body,

they never go away but different things seem

to flare at different times....For

example...last week my elbows, hands and

wrists were incredibly swollen and painful

and now they are a tad better and my knee's

are a mess, the left one in particular.

My neck hurts so bad and that never seems

to get much better although it definately is

worse on some days...the sweats and chills

never stop. The headache comes and goes.

It makes one think sometimes that you are

imagining things. Has that happened to

anyone else? Also my stomach acts up and it

is weird, just a dull funny pain and sweats

after eating....Very Strange.......

------------------
Deb :>)

With Lyme symptoms & positive Western Blots,
but only short term antibiotics, it's no wonder that you're getting worse.

Print "Diag Hints & Treatment Guidelines..." www.ilads.org/burrascano_1102.html
page 16: Antibiotic Choices gives the dose Dr B recommends
page 17-18: Treatment Categories suggests length of treatment needed.

This was written in 2002 & lots of LLMDs are now using combinations of abx before going to IV therapy.
Many also say to treat for 2 months AFTER ALL symptoms are gone.

You really need to be evaluated by a Lyme Literate Med Dr (LLMD) - ASAP.

With the symptoms you mentioned, it's likely that you also have co-infections.
Sweats & chills, headache, muscle pain, fatigue can be symptoms of LD, but they are also very common with Babesiosis, especially sweats & chills.

It is typical for Lyme symptoms to migrate around the body.
I don't think RA migrates, but Lyme Arthritis does.
My local Rheumatologist said I had RA, but the LLMD I saw in New Jersey said I had Lyme Arthritis.

One suggestion about posting -
Some people on LymeNet have eye problems that make it difficult to read long paragraphs. You may get more responses if you put a break every 4 or 5 lines.

To edit, click the little pencil at the top of your post & you can make changes.
Every few lines, hit 'enter' twice to add spaces.

With the good details in your post, you should get some helpful suggestions.

Go to "Seeking a Dr" here on LymeNet.
Put your location in the title & people will e-mail you info about LLMDs in your general area.

On the left, click "Support Groups" & contact those in your state & surrounding states. They should have valuable info for you.

disease doc and I am very near tears and

frustrated. I was there for 4 hours quality

one on one time. My Western Blot came back

reative in two places, 39 and 41, she said

that those two are NOT indicitive of Lyme.

She said all the things in my blood work

also don't conclusively prove AutoImmune

either so she ordered a bunch more blood

work. She says that it is clear that I am

very sick and that I have symptoms of Lyme,

RA

and some other AutoImmune Disorders but she

is certain it is not Lyme because all my

Elisa tests have been negative. All my

Western Blots have been different from each

other which she says that also means no

Lyme. I am so sick, and so frustrated. I

seem to be getting sicker every single day

and she says to take nothing but aspirin

until we figure this out. I have had this

happen every single year with the common

denominator being a tick bite, she says she

doesn't think that that is anything but

coincidence. I am worried sick about my

work and I need to get better. At one point

in the conversation she said that she would

send me to someone who would put me on

antibiotics for years but that she will not

do that because she is intent on finding the

problem. Having said that she said later in

the conversation if this next round of

bloodwork doesn't conclusivley point her to

an answer that she wants to transfer me to

a Rhuematologist. SO, seems to me she is as

confused as me and with RA or Lyme seeming

to stare us in the face we should have an

answer and a plan. Because I tested

negative for RA factor and my arthritis

panel came back negative she says it can't

be that, but I read on the Arthritis Sites

that it is negative in over 20% of people

with severe RA....now she wants me to keep a

journal for the next two weeks and take my

temperature twice a day. I am having such

sweats and chills it is obvious my

thermastat is not working properly. I do

agree we should not make an assumption but

now I am confused big time. I thought the 39

and 41 bands were positive for Lyme so I

guess I don't know as much I as I think I do

and now I am really second guessing

everything that is happening to me. She said

all the things that ARE wrong in my

bloodwork she believes are connected and

that they seem autoimmune in nature. She

also said she can see how sick I am and that

she saw all the swelling in my joints and

the nodules in my hands swollen and so she

knows that they were and are there for sure.

She had no explaination for the traveling

symptoms and I told her that it drives me

crazy and makes me think I am nuts (i.e.

extra flares in hands one day, knees the

next etc...) Sorry for being so

long....maybe I need a nap.

------------------
Deb :>)

WELCOME To LYMENET

How to Post what where explanations
Posting
Remember This
Rules LymeNet.Org Webmaster
Rules
Here's more goodys! A typical response to newcomers.

Page 1.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and
foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Lyme Disease symptoms 2005
Lyme Symptoms 2005
Post for a LLMD in
Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
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Lyme State Info Cheryl's
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LYME DISEASE TREATMENT & DIAGNOSIS
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( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )

See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

Western Blot
Blood Brain Barrier

ABX `s Cross Blood Brain Barrier
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Newbie Links

Tree's Flash

Updated 07/06/05

Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | 

According to Dr. J:
"There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93. Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease."

According to Dr. K:
Things to look for in bloodwork.
(Make sure you get copies of the original bloodwork, because these signs are often overlooked.)

Lab parameters affected by Lyme:
* Abnormal lipid profile (moderate cholesterol elevation with significant LDL elevation)
* insulin resistance
* borderline low wbc, normal SED rate and CRP
* normal thyroid hormone tests but positive Barnes test and excellent response to giving T3
* type 2 (high cortisol, low DHEA) or type 3 adrenal failure (low cortisol and DHEA)
* low testosterone and DHEA
* decreased urine concentration (low specific gravity)

Bb tends to infect the B-lymphocytes and other components of the immune system which are responsible for creating the antibodies, which are then measured by an ELISA test or Western Blot test. Since antibody production is greatly compromised in infected individuals, it makes no sense to use these tests as the gold standard or benchmark for the presence of Bb (7). We also are aware that in endemic areas in the US up to 22% of stinging flies and mosquitoes (2, 8, 9,10) are carriers of Bb and co-infections. In South East Germany and Eastern Europe 12 % of mosquitoes have been shown to be infected. Also many spiders, flees, lice and other stinging insects carry spirochetes and co-infections.

My advice is to keep going with this doc, but make an appointment with an LLMD TODAY to hedge your bets. There will probably be a month wait for the LLMD, and in the mean time you can get back test results.

Convince this ID doc to give you a round of Minocycline, because there's a peer reviewed article (search on Pubmed) that says it helps with Rheum. arthritis. Then if you herx, you know you have Lyme.

You can read about test interpretations and herxes at my web site: http://www.lymediseasefilm.com

Also, be aware that a study by Ziska et. al. found that 43% of Infectious Disease docs would only give people with persistent Lyme 2 to 4 weeks of antibiotics. You may be fighting an uphill battle to say with an ID doc.

Keep fighting for your rights as a patient, and try to get some Minocycline fast. Bring your doc that article.
KrisKraft

that you listed in your bloodwork list are

the things wrong with my bloodwork along

with elevated Eosinophil's, liver function

tests evelvated and then not, Sed Rate

elevated and then high normal.....and as I

mentioned the two reative bands in my

Western Blot. There were a couple of other

things but I am too tired and my head hurts

too much to think too clearly....AND

I just had a fight on the phone with the

insurance company because apparently my

primary care doc's office reported me to

be able to work and without any active

infection based on one ELISA test...the

infectious doc sent three pages of notes to

them and apparently they don't matter

because she doesn't do their form in terms

of wether or not I can work b/c she feels

the primary care office should handle that

and the stupid nurse botched things up big

time....the infectious doc said the notes

should show a blind man that I am very, very

sick......:>| ARGH!!!!!!

Welcome to Lyme Net!

Sorry you are having such a bad experience. I do hope you feel better soon.

You have been given some good advise.. and one word sticks out as I read your post.

BABESIOSIS.

You got it! Until it is properly treated.. you won't feel much better.

And you will see that our member cbb noticed it too. And she is VERY smart. But don't tell her I said that. You KNOW how she gets when folks say nice things about her. ~smile~

The second word for the day is...

Bartonella.

Quest diagnostics lab does a test for Bartonella quintana and Bartonella henslea.

I can't say 100 percent sure you have those too.. but I would get tested if I were you.

IF you are positive on Babesiosis and/or any Bartonella tests... then Lyme is also VERY possible. Even if negative on those tests.. Lyme is STILL very possible.

You said.. "I was there for 4 hours quality one on one time. My Western Blot came back reative in two places, 39 and 41, she said that those two are NOT indicitive of Lyme."

Basically speaking... the doctor you are seeing is a dope. And that is the NICE way to say it.

She is trying VERY HARD to diagnose you with ABLS. That is a VERY common practice that Infectious Disease DUCKS use.. and if you won't swallow it.. they refer you to a Rheumy duck to confirm the diagnosis.

ABLS?

It means.. Anything BUT Lyme Syndrome.

ID ducks fish for it... hem and haw... and will go the extra mile to try to show you that you can't possibly have Lyme. It is a glich they have in the section of the brain that controls their ego.

Every day you play with those idiots is a day wasted. Every day the infections you have get worse... and YOU suffer.

You said.. "Well I am back from the infectious disease doc and I am very near tears and frustrated."

If you are only "VERY NEAR" tears... you are one of the few who has made it out of an infectious disease doctors office with out being TOTALLY in tears before reaching your car.. or strangling them in the process. Good for you!

You have several strikes against you right now... sorry to say.

1. You are already sick and it is hard to deal with that.. much less trying to figure this out on your own.

2. You have a doctor who is an idiot and should be told so.. IF you go back. WHY you would go back... I really don't know... but if you do.. please feel free to say Tincup said you are an idiot if you want to. This doctor has already done you wrong over and over.. and you REALLY want to move forward... don't you?

I mean hey... if you bought a parachute from the Acme company.. and it didn't open when you jumped from the plane..

You wouldn't go back to them to get another one.. would you?

I don't think so. So why return to someone you are having to double check.. and who you KNOW in your heart is wrong?

Jump off the duck carrosel NOW! I can tell you are fairly intelligent. And I KNOW having the power to just say NO is hard when you feel like dirt. But give YOU the care and benefit YOU give YOUR patients.

I am SURE you deserve the best.

3. You live in a HIGHLY endemic area. You work with animals. So what does she think? You have a disease that CAN'T be Lyme? What a BOZO!

If I had a nickle for every time I have heard THAT.. I'd be a richer one for sure!

Soooooooooo.. Babesiosis, possible Bartonella.. and a new doctor who knows what they are doing. That is what I am prescribing for you.

We are here. Let us know how we can help.

We are pretty good at giving folks a good swift kick in the pants when needed.

Beeeeeeeecause.....

We want you to feel better.

We have been there, done that.

And we don't charge for our advise. No duck bills HERE!

The above is MY opinion... and I am NOT a doctor. But I HAVE eaten ducks several times.

------------------
If you get the choice to sit it out or dance...

Thank You for the support!!!

Michelle is awesome but

young and very much in the "Lyme is a catch

all camp"...I liked her and I was trying to

be open minded but today just made me

realize that however many weeks it takes she

is determined to prove I DO NOT have Lyme

even if there is no name for what I DO

have. She has been kind and very careful to

concur that I am very, very sick for which

I give her a brownie point...The insurance

company and my primary care doc's office

have me foaming at the mouth and with this

headache when I am done with them they will

wish they didn't imply that I am pulling a

fast one....A NURSE who NEVER saw me's

word and 1 Elisa test result is preferable

to 3 pages of clinical notes from IF

Doc???? OH my.....they have GOT to be

kidding!!!

points....seems she heard from the insurance

company who told her that they were denying

my claim and not accepting her clinical

notes so she let them have it but good PLUS

called

primary cares office and let THEM have it

and told them to straighten out the

insurance mess they created because I am too

sick to be working and need my insurance to

kick in.....Primary Care called me

immeidiately AND the

insurance company immediately now we will

see what happens, I have to see Primary Care

tomorrow....

That was nice of her to take

the initiative to handle all that for me,

most doc's would say it wasn't their

job....particularly a specialist....

really it wasn't her responsiblity so that

was really something.....So, that made me

feel a tad better even if she seems to be

dragging her feet about the Lyme diagnosis,

at least she is genuine and cares enough to

be involved.....She did consider antibiotics

today but is trying to be conservative

about it and rule out everything...Amidst

the controversy I am trying to give her the

benefit of the doubt....I think she is

truly trying to do the right thing...she

said she is going to research and I have

pointed her in the right direction...She

came from Boston so I think she knows who to

call

once she realizes she may need to be open

about the Lyme....Do you think??? I am so

grateful for all of you...this has been a

long and painful journey and it is nice to

have some support for a change....Thanks

again to everyone! :>)

It's late.. and I am not going to run off at the mouth like I always do. Well, maybe I am.. we'll see. HA!

Just want to say that I also am often impressed with "nice".

However..

A pretty strawberry plant is "nice".

A coat when the temps dip below 50 degrees is "nice".

But PLEASE.. be careful not to get caught in the "nice" trap just because she is trying... and because she gets some stuff right.

I almost had to chew my own leg off when I was caught in that trap. NOT fun.

No offense intended.. and I am VERY guilty when it involved sticking with a "nice" doctor in the past. But it made me worse in the long run. "Nice" didn't kill the infections.. but I have to admit.. it was at the time, MUCH better than being belittled, yelled at, and tossed out of office after office... like I had been doing.

Just please don't stick around too long and get worse. I will worry about you too much.

Maybe try to put a limit on the time you will stay with her. And in the meantime.. please get an appointment set up with a good LLMD. If you decide later to cancel.. fine. But if you hold out and continue to go with her.. and it falls through.. then you will have to start all over and will be wasting time you really can't afford to lose.

Remember you can always educate her later... AFTER you get proper help for yourself.

You shouldn't have to beg or fight for help. NOT in YOUR condition.

Don't mean to sound bossy... just want to see YOU feel better... and be on the road to recovery soon. Cause that road feels good.

Let us know how we can help and keep us updated... ok?

NOW.. I sleep.

------------------
If you get the choice to sit it out or dance...

I got this in an email this morning, hope it is okay to share it, it came from the "LymeInfo" newsletter;

TESTIMONY, please, by THURS, July 7, LYME DISEASE PUBLIC HEARING
If you are unable to attend the meeting Friday, see info below,
please consider sending a testimony of how Lyme has effected your
life and especially how difficult it is to get diagnosed and
treatment to this email address:
[email protected]

Tincup, you are wise and you make very good

points. Here is what I have decided to do...

Today I see my primary care doc, I am going

to suggest to him that perhaps we should

treat these fevers, sweats and chills as

a non specific problem, in other words

we are simply going to

avoid calling it Lyme and remove some of the

controversy. I do not believe for a minute

that I have any autoimmune disease because

I have non specific bloodwork and symptoms

so far for nothing BUT Lyme. I am a wreck

this morning, the sweats and chills are

definatley getting worse and I am rapidly

losing mobility in my knees, neck and back.

Plus this headache has got to go. The

swelling in my joints has gone down, anyone

had that happen before? Of course THEY are

taking that as a sign of improvment even

though my joints are signifigantly more

painful and my mobility is getting worse.

Well, now that I have whined and whined to

you all I will end here. Any thoughts on

my symptoms or advice before I see my doc

would be most appreciated. He hasn't seen

me himself yet, and he is actually a very

proactive doctor who has known me for 10

years. I am certain I can get him to listen

but could use some help with what to say.

If I were you I would'nt be taking any immunosupressive drugs cuz they made my condition worse.......

Keep in mind your symptoms will probably get worse before better while on abx's........and explain herx reasons to your doc...tell him to look up in old litterature about syphilis.......

good luck............zman

quote:

---

Originally posted by Tincup:
BABESIOSIS.

You got it! Until it is properly treated.. you won't feel much better.

And you will see that our member cbb noticed it too. And she is VERY smart. But don't tell her I said that. You KNOW how she gets when folks say nice things about her. ~smile~

---

Dbag...This definitely has babesia written all over it. Regardless of what any tests say about it....GET treated for it!!!

Welcome to Lymenet!

My very sick daughter and I sat in front of her ped many times and other specialists such as Rheumy and Oncology docs telling them about Lyme (some of the best our state has to offer) only to walk away crying our eyes out.

The gastro doc wanted to have her go to a psycologist or psychiatrist. Tummy problems of the head type he said.

We've talked to lots of brick walls. We are optomistic folks.

Just please guard your heart today and be ready for plan B. Please take our very knowledgeable Tincup's advice. It is well intentioned and will save you a lot of suffering.

If you do want to try to convince this doc, I wouldn't settle for telling him to abandon the controversial lyme diagnosis, unless you telll him, please give me drugs - let us talk about what it is later.

You are in a painful, disheartening position. If you have a friend that could help you plead the case I would take them.

Just want you to know now that my daughter is being treated and has improved sooo much, her regular doc has a peaked interest. I told him that the proof was in the pudding and he agreed that she is that pudding!

My daughter's complaints were much as yours, very strange migratory joint pain/swelling, headaches, vision problems, vanishing rashes, sore throats, mobility probs., abdominal pain, GERD, I could go on, but I won't.

Deb, you could be a poster child for lyme.

Because the vast majority of docs don't believe in the diagnosis of lyme and it's wide spread prevalence, they don't want to look "nutty" and go outside of their comfort zones.

Find someone with some guts, willing to do that for you. You deserve a fulfilling, healthy life. You are worth it. Please find an LLMD. I hope you are well soon.

Even though my daughter is getting better and because of that, I cannot let go of people like you, suffering on end like we did. It pains me to see it.

Print it off, check off as you read the most important things. Months of reading here, and tree adds things as they come up.

You've gotten excellent advise from others.

Since you have missed a lot of work, and if you decide to file for social security disability insurance benefits, SSDI, please post about it. I'll include a WONDERFUL disinissues web site for you to read PRIOR to filing for benefits!

I am VERY angry. It seems; (according to this doc :rolleyes that he believes I have fibromalacia complicated by anxiety and depression. For which he gave me a script. THIS without looking at my joints other then to feel them through my cloths, or really looking at any part of me.

I was handed a referal to a rhuemitologist and a prescription for Paxil.

This without reading the infectious doc's clinical notes, bloodwork results or impressions.

I have been dealing with this for only a month and I am ready to rip someone's head right off.

I have NEVER been sickly, I am not a crybaby, I am not anxious, depressed or otherwise in need of a medication for those things. I am simply physically ill and now I am MAD!

quote:

---

Originally posted by DBag:
I have NEVER been sickly, I am not a crybaby, I am not anxious, depressed or otherwise in need of a medication for those things. I am simply physically ill and now I am MAD!

---

You know....it's GOOD that you are now angry! Use that anger to your advantage. Find an LLMD right away!

I was dxd with fibromyalgia 25 yrs ago....WRONG! I have Lyme disease!

Anti-deps won't cure you, but may help in the meantime. Find a dr ASAP!

We'll hold your hand, OK!!?

Enough ducks yet? Yes, we all want to trust our doctors. But now you must focus on getting better. Later, you can attempt to educate the ducks.

My duck now does my twice weekly Bicillin injections. He's the one who told me-we don't have Lyme around here. That was last October. Now, with 2 CDC positive Western blots and a positive Babesia titer in front of him, he's slowly changing his tune. Plus, he's spoken to some area vets who tell him, yes, they are picking up Lyme.

Each visit I take a new written piece of Lyme info. Last visit was the report from a neighboring county vector control with the incidence of Lyme, Babesia and Ehrlichia in ticks. He won't show it but I think he was surprised to see the incidence of Babesia was the same as Lyme.

Call/contact the support groups tonite. Tomorrow get on that phone and call some Lyme docs. Get an appt ASAP. Ask to be put on the cancellation list.

My body sorta controlled Lyme for many years. It was when I got Babesia that I fell apart. My Babesia symptoms-shaking chills, then fever to 102 with a terrible headache and nausea, achy all over and wiped out tired. My duck thought I had malaria and prescribed doxycycline. After the first dose the fever and chills stopped.

Doxy is not the usual treatment for Babesia, BTW.

So here's your work for tonite-get some Lyme doc's names. My is one hour north of NYC, email me if you want the info. Put LLMD in the subject.

Let's get to work on this.

Janet

He said to go ahead and look into lyme, but if my daughter had it that a lyme patient's pain wasn't as bad as the pain my daughter was "claiming" to have and she had a pain disorder as well!

He doesn't know how painful lyme is and that it messes with your perception of pain too.

This after bone marrow testing, an endoscopy, xrays, blood work (lots of it). Then he said he wanted a group of five to look her over.

I was so desperate I probably would have taken his advice if it hadn't been for the folks on this site.

It may take a while to get in to see a LLMD. Don't give up though! It'll happen and you will start to get better. You will be glad you did.

It will be like you finally met someone that speaks the same language that you do.

Take care and know this is not the end of the road for you, there are still good docs out there that treat lyme! Janet is right, let that anger work for you!

Particularly:
migratory symptoms ~ something flares for a day or weeks and then changes to something else entirely.

joints ~ a rotation of jaw, shoulder(A/C joint, one or both), hip(s)right foot and/or ankle, left wrist, sometimes knee (usually right). In between the joint stuff are muscle pains, twitching and spasms. (fun fun fun)

subnormal temp ~ usually <97, except when running a low grade fever. sweats, chills...

Neckaches and headaches

Weird stomache stuff

memory problems (which would explain why I can remember more of what you said even looking back at the topic in between)

Don't let them tell you you're imagining things. If you are we're all having a very similar hallucination.

Hang in there! Hopefully, there's an LLMD in your near future and will get you the treatment you need.

That is the number of times I have heard folks say basically the same thing you just did as you left the ducks office.

Of course YOU managed to keep it MUCH cleaner than most of the versions I hear! Good self control there. But then again.. you did NEED him at the last minute to do your insurance work... so the self control was slanted I would imagine??

Anyhow..

You can keep dancing the old duck shuffle if you want.. but I will let you know.. no matter how hard you try... it is a RARE day anyone gets help from a duck. It doesn't matter HOW you approach them.. how much you try to educate them.. how long you've known them... how badly you want them to at least LISTEN or TRY.

A duck is a duck is a duck.

Plain and simple.

What most people going to ducks get for their troubles is anger, tears, frustration, big bills .. and .. the typical..

"No Lyme.. you are depressed, anxious.. so take these anitdepresents."

If you are still there in the office after they tell you that.. they hand you a referral to another duck who will confirm the first ducks diagnosis.

Ya know..

We can only lead you to water.. we can't make you drink.

And..

Right now I kinda have the urge to hold your head under the water till you DO take a drink.

But that is ONLY because I KNOW your frustration personally.. and have seen THOUSANDS of people go through the same nightmare over and over... and I care.

For some reason, me included, we all think WE are the exception and WE can make a difference and change the duck so they think like we want them to.

My advise.. GIVE IT UP.

Get off the duck carrosel and get yourself some good help NOW!

If you still have a bug up yer butt later on.. you can THEN go kicking ducks all you please.

But for now YOU are our main concern.

I HOPE among HOPE your next appointment is with a LLMD.

If it isn't..

I have a parachute for you.

------------------
If you get the choice to sit it out or dance...

quote:

---

Originally posted by DBag:
[B]One more thing.....What is a "duck" exactly...what does it stand for???

---

A doctor that isn't lyme literate. One that doesn't know how or want to treat lyme properly.

Apparently living in an endemic area has its own set of woes, finding a doctor that still can practice based on his own knowledge. Email folks here and find that special doc.

War has been waged on you. Hobble your injured body over to the LLMD. The spirochetes are your enemy, not the too ignorant to believe ducks.

Although, they deserve all the frustration you exude because of them. Fighting ducks will only make you lose ground with your real enemy and right now they are enjoying your head looking the other way.

They are firing on the nervous system as we speak. So start to take the microscopic world seriously and leave the quacks to the pond.

We all care. Been there. Please don't try any other avenues besides LLMD, oriental med???. Not that I knock it, I think Eastern med. meeting Western med. is a smart thing, but will that doc prescribe the needed abx? Unsure?

Or will he be looking in an apothecary cabinet for a root? Roots + abx, good. Roots no abx, bad

I don't know your doc friend so I cannot be sure how that would play out for you. I think before I risked a long drive to him, I would call and talk to him first to feel out the situation.

LLMD is your BEST BET.

I am not an LLMD, but I like to think of myself as a step up from a Quacker. Seriously, I have NO medical credentials, I'm just mom to a veteran of war.

Go to the "seeking doctor" section, go to a support group, or makes some calls to the Lyme Disease Fdn. or Associaion, and make an appointment with a Lyme doctor.

There is no doubt that you have Lyme, with your Western Blot results (did you have band 39 on IgM or IgG?). Probably ohter tick-borne diseases too.

Because you get sicker in the warmer weather, and possibly in the sun, you may also have some autoimmune stuff going on that is triggered by your Lyme infection.

Frankly, there is no point in you posting any more symptoms, or horrible experiences with doctors, or anything else, when what you need to do is pick up the phone and make the appointment.

Do you have insurance issues? Do you need a primary care referral? Find a way to get one... If not possible, do you have the money to pay for a first appointment?

This thread is way too long...get the proper help now... Lymenet can't treat you!
If you have insurance or money issues, we can advise you on that- but make that appointment with a Lyme doctor!

I tried to post it and LymeNet didn't "get it".. and it was suddenly LOST!

So.. I'm trying again.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Good morning..

I see hopelessness sneaking in this picture.. and desperation... and heightened
frustrations. I see confusion and doubt... and more confusion. I see someone trying to
wish it away .. the whole darn mess... with the very little energy they have left.

I see someone who is depressed and going down hill.... who does NOT need
antidepressents... simply some answers and hope... and they need SOMEONE who knows
how to help and gently guide them.

I see someone losing faith with the entire medical profession... even more so than
before.. and someone who expects better and who is NOT getting it.

Hey..

Might I be close?

If so.. just call me pschyic Tincup.

If not.. just call me @pschyo@ Tincup!

I also see some things in this person that are a big plus... IF used correctly.

1. A good education.. mostly self desired and therefore, self taught.

2. A true desire to help others.

3. A kind heart.

4. A desire to learn and share.

5. A desire to get better.

6. A strong "mind over body" person.

7. A good core.

8. Strength and passion.

Blah blah blah..

Hey.. this ain't a "This is Your Life" program!

And I ain't looking for a date either.

Any more nice words will cost you!

Now.. I am going to explain something to you.. which by the way is keeping me from
doing laundry. And if you knew ME you'd know how much I am going to suffer from not
being able to do one of my favorite things in the whole world!

But you MAY be worth it?

However, the jury is still out on that??

OK..

Sub normal temps. Sweats, chills, nausea, etc.. in addition to BABESIOSIS and Lyme
symptoms.

Thyroid and immune problems are/have been setting in.

Why?

Simply?

Spirochetes.. that cause Lyme.. can enter the brain.

They also enter individual cells in the body (as do the Babesia organisms).

When they pass through cells they cloak themselves in your cell gook.. and then they are coated with YOUR DNA as they emerge from the other side.

Now.. go back and re-read that last paragraph and absorb it.

Ok..

Results when that happens.....

Destruction of the cells first of all.. and... the immune system does not detect them as well when they become "sugar coated" like that.

Enter another problem.

The body temperature becomes lowered cause the spirochetes like it that way (?).. and
they don't like the heat/fever that threatens them. Cooler temps make it a better environment for them. And/or..

Once in the brain.. the brain starts shutting down and going freak-o... and reserving it's power for VITAL operations. What IT thinks is vital, anyhow. (Actually it doesn't often consider sitting up and smiling very VITAL at this point... darn that old brain)

The thyroid gland and/or the signals to it go astray in the efforts to protect you or your tiny brain (hehehe).. and/or due to the infection.

You FEEL like garbage at this point.. but yet have no "typical signs/symptoms" of an
active infection that medical doctors must.. or think they must go by.. in order to get off their lazy BUTTS and do something.

They only see.. at this point.. someone depressed and whimpy who is sick of being sick... and who is starting to try their patience and annoy them. No temperature.. no actual vomiting on their floor.. and no signs tattoo'd on your forehead giving them the answers which they can document in the chart to justify writing prescriptions.

So to them.. you are healthy cause they can't see this destructive process.. and because they are uneducated they can't fathom this process. They claim you are just getting "old".. are depressed.. having family/job problems.. etc. They have NO clue to the complexities of this illness.

As I'vebeenlymed2 so appropriately said.. and others have said.. (who, by the way, care
and have been in YOUR shoes)...

You need someone to help you who KNOWS this disease. Someone at least 1/2 as smart
as me! HA! JUST KIDDING.

I could spend weeks telling you what I know.. but to tell you the truth.. in the shape you are in.. you won't retain it all and it would be a waste of both OUR times.

But LATER.. when you are doing better.. I will be ready, willing, and delightfully able to tell you all about it... and share ALL my files if you so desire.

Then you will crusade to help the doctors and others learn... as you recover nicely.

Right now.. we need you to listen and trust us. I know that is hard to do... and is not
recommended generally. However..

If I came even CLOSE to describing your situation.. there MUST be a reason for it??

Ya think?

So my dear..

YOUR choice... either..

Poop or get off the pot!

Was that clear enough?

HA!

The fact you have education as a lay holistic thingy is WONDERFUL!!!!!! I only wish I did. Darn.. then I would be even smarter, wouldn't I??!!! hmmmmm???

You will be able to use that information you have, along with what a LLMD will do, to
help yourself.

Now.. you can use herbs.. and cover yourself up in honey and roots of all sorts if you
want.. BUT..

If that worked all by itself.. NONE of us would be here. We've tried it.

The ONLY thing we KNOW that will kill off keets and the Babesia organism at this
point is antibiotics/antivirals. And that fact comes from other holistic doctors...
chiropractors.. researchers... medical doctors... and me.

Now.. we do have LLMD's who lean towards more holistic stuff, if that floats yer boat. But as far as I know they all use some form of antibiotics to kill the infections.

And we use immune boosting (sp?) supplements and herbs pretty regular here too. After
all... NONE of us like antibiotics. But they HAVE saved lives... OUR lives.

We actually sometimes use things you know about.. like Artemissin for babesia
organisms along with Mepron sometimes.. and some folks try cats claw for Lyme.
MANY of us use milk thistle for our liver protection.. and lots of fish oil.. and even
Nystatin for yeast (which was developed from a root of a plant that was discoverd in NY
state by a lady.. hence the name N.Y.-STAT-IN. ... NY state)

So.. blah blah blah...

Have you seen the movie, My Cousin Vinny?

If not.. rent it.

In one scene the VERY annoyed judge looks at Vinny and says something like...

"The next words out of your mouth BETTER be guilty OR innocent or you WILL be held
in contempt of court."

Well, the next words out of YOUR mouth little missy, BETTER be...

"I just made an appointment with a LLMD."

To end the suspense... I'll go ahead and tell you..

Vinny looked at the judge, twisting and turning his head around and looking sheepish.. and said..

"Well Judge, in that case.."

BAM.. Down went the little hammer on the desk.

The next scene was Vinny being escorted on the bus to the local jail for trying to squeek in extra words and for disobeying the order.

Let that be a warning to you!

Also.. I thought I would.. out of fairness.. give you a choice here.

So here goes.

You can

A. Pick up the phone right now and call a LLMD for an appointment.

B. Wait 15 minutes and be ready... cause I am coming over and will be sitting on your
head till you do.

Your pick!

And.. just so you know.. tomorrow morning when one of the gang here is looking for a
clean pair of socks...

I am sending them to YOUR house.

Yep, I imagine you heard her loud and clear. She has a way with words!

You're going to get well, it's just a matter of finding the right doctor!

Have you read "Camp A and Camp B" written by Tincup? Have you read Lyme Wars?? I will include those in the following links.

BTW, would you please push "enter" after every two sentences or so? It would really help those of us with vision problems be able to read what you've written. We don't want to miss anything! Thanks!

Hang in there, kiddo!
Treepatrol's links http://flash.lymenet.org/ubb/Forum5/HTML/000569.html

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

More info: http://www.ILADS.org/

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

Lyme Disease State Info http://www.lymeinfo.net/support.html

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

http://www.anapsid.org/lyme/matthewgoss/index.html

But I tried.. and guess what?

It STILL doesn't work!!!!

Grrrrrrrrrrrrrrrr..

Sorry tutu. I don't have the link. Maybe Tree has it?

I can post the article again if needed.

I THINK I can find it in my own files.

Thank you so much for all the links, I read every one and I shared them. I will now continue to share and educate the mainstream! I also will include every single one of you in my prayers.

Thank you so very much!

quote:

---

Originally posted by DBag:
Hi Everyone; Looks like we are going to go the IV Route next week, my bloodwork is still all messed up.

I am now glad I was somewhat patient and I shared the Western Blot Lecture by Dr Donta. Anyone have a link to the original lecture notes? I need them.

FINALLY, relief in sight! So, thank you everyone, we will see how it goes from here but it is looking like I am going to be treated and without any further arguement.

Thank you so much for all the links, I read every one and I shared them. I will now continue to share and educate the mainstream! I also will include every single one of you in my prayers.

Thank you so very much!

---

This goodbye sounds final. Unfortunately, you'll be back. IV ? How long ? You have to understand, there are various treatment stages one has to go through to get better.

A true LLMD may start you on lyme abx for a while to reduce bacterial load, then switch meds to treat babesia, then back to different lyme meds to kill the various forms of Bb, then bartonella treatment, then back to lyme meds, etc., etc.

This isn't "let's get hooked up to an IV for a while and then go out and grab an expresso". This is serious business ! It's your life !

You're trying to educate a doc as sick as you are ? You like her, you consider her a friend, then go out and have lunch together, and talk about how rotten men are, like every other woman in America.
But, get to an LLMD for treatment. I'm sure you've been e-mailed many names by now.

Pick up the phone and make the appointment. Your life is more important than hurting the feelings of an ID doc.

My son saw two llmds since August 2003 and he did not/has not improved.

We just returned from East Hampton and it looks like my son has just not been treated properly.

My son saw two llmds since August 2003 and he did not/has not improved.

We just returned from East Hampton and it looks like my son has just not been treated properly.

My son was diagnosed in August 2003 and he has seen/been treated by two llmds. He has never ever improved and finally we made an appointment with Dr. B.

My advice would be to see a literate doctor who has treated many, many lyme patients.