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Old 09-02-2007, 06:46 AM - Thread Starter
 
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I Decided there were enough people around here
suffering from CFS , Lyme and Fibro to start a tribe.

I am sure many of you have heard that many who
are diagnosed with CFS test positive for Lyme or
Mycoplasma. I have tested positive for the Mycoplasma
and am preparing to get an Igenex test done (for Lyme)

I am not sure how long I have had it, perhaps since
I was a child. I want this group to focus on ways
to get WELL. I'm pretty sure I am beyond the realm of
abx, but that is certainly something that can be discussed.

Currently all I have really tried is Glyconutrients, and
when taken consistently,they keep me somewhat functional
as long as I get enough sleep and stay away from carbs.
However I still suffer from allot of fatigue (main symptom),
pain(fibro pain ), and sleep intolerance. If I don't get
allot of sleep every night I literally fall apart.

From my research it seems that some of the most aggressive
protocols for Lyme aside from abx is Rife, Salt/C, and Glycos.
I imagine all three together would be ideal. I have also heard
certain herbs and ozone can be helpful on top of a nutrient
dense diet.

I have just started the Salt C protocol myself and I think I am
herxing, it has helped alot of people but I am still very early
in the process.


Welcome!:

Btw...any of you get an increase in fibro pain during ovulation
and menses?
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Old 09-03-2007, 10:28 AM
 
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Just wanted to say I have/had Lymes. :
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Old 09-03-2007, 09:17 PM - Thread Starter
 
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Hi!

How ya doin?

I wonder where all the Lyme/CFS/Fibro mommas are?
I've seen so many posts in regard to these ailments...

I'm glad to see you are well

I'm working on alleviating my chronic condition.
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Old 09-21-2007, 08:53 PM
 
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I'm here!
I got bit my a blood-thirsty Lyme-carrying blankity-blank back in May. Life's been so fun since then!

I'm glad to see someone else is doing that low-carb thing. I'm doing it too now, along with a bunch of funky supplements and an antibiotic. The only thing I actually understand the point of is the antibiotic. But my doc is registered with ILADS, so I figure he must know what he's doing.

What's fibro and what's the Lyme connection?
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Old 12-09-2007, 11:01 PM - Thread Starter
 
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Originally Posted by PrayinFor12 View Post
I'm here!
I got bit my a blood-thirsty Lyme-carrying blankity-blank back in May. Life's been so fun since then!

I'm glad to see someone else is doing that low-carb thing. I'm doing it too now, along with a bunch of funky supplements and an antibiotic. The only thing I actually understand the point of is the antibiotic. But my doc is registered with ILADS, so I figure he must know what he's doing.

What's fibro and what's the Lyme connection?

Fibro is closely connected ( basically the same thing as ) chronic
fatigue syndrome. There are a few camps of thought, one is
that the brain is causing the painful symptoms and the fatigue
is depression. One of the others is latent Epstein Barr Virus infection
, candida and other things. There is another camp which claims
most cases of Fibro ( which is the muscle pain tied to CFS ) is
really Lyme. Not that there is also Fibro, CFS and Lyme but that
these "names" are really caused by these pathogens.

Sorry I am a bit tired right now I hope that made sense.

Oh and....btw.

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Old 12-10-2007, 12:19 AM
 
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Hey Jean,
Glad you bumped us.

I've had time to learn more about fibro lately as dh's aunt has it. I'd never heard the theory that it's critter-caused too. If so, it's totally being treated wrong, isn't it?

Since being on this thread last, I've gotten pregnant (due Aug). Even though it's awesome, it adds a whole new health stress / complication.

Have you been pregnant with Lyme or known anyone else that has?
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Old 12-10-2007, 12:28 AM - Thread Starter
 
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At first i didnt know about the pathogen theory behind Fibro or CFS.
But now that I am familiar with it it makes complete sense.

Many CFS/Fibro sufferers test positive for Epstein barr and Lyme,
many more even test for chronic candidaisis. Other types of
tests show lowered immune function, adrenal damage, joint
problems, and severe hormone distruption.

I do know a few well people who had lyme and treated it with
alternative methods. I also belong to Lymestrategies on yahoo
groups. Again , many people do find relief with abx but you need
to be at a specific stage in the infection. Lyme is not something
that kills most people, most live with it chronically. This however
does not lessen the amount of suffering it causes. Some bodies
do better than others obviously.

I am also not saying that CFS/Fibro IS Lyme in all cases, it could
be a diff pathogen. But i will never again believe that CFS/Fibro happen
for no reason with nothing behind it. Most of the symptoms point
to external cause.
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Old 12-10-2007, 04:28 PM
 
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Interesting thread. I am having some major health concerns right now that I wonder if may be related to Lyme...I am currently trying to find a doctor who will send my blood to the labs in Florida to test for Lyme since the Western blot test is quite inaccurate from what I've heard.

Bethany, crunchy Christian mom to Destiny (11) Deanna (9), and Ethan (2)

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Old 12-10-2007, 04:53 PM
 
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Angelpie,
I have Lyme and have had to FIGHT for treatment. Let me get you started.
(I know you may not have Lyme, but you'll need to make certain. If you do and don't get treated, it won't be fun.)

Go to ILADS. This is a group of doctors who specialize in Lyme. Whatever the drive/flight to get to one of these docs, it'll be worth it.

You'll need to get your blood tested from the Igenex labs (in CA?). They're known to be the only labs worth the time (for Lyme). If the tests come back negative, try try again. They very frequently will be negative. Negatives mean nothing with Lyme tests - only positives mean something.

If you're fairly sure you've got Lyme, go ahead and get started on a broad-band antibiotic. This may be where the fight comes in. Remember that precious few doctors even acknowledge that Lyme is common - far fewer will know how to treat you.

You'll need to be on the antibiotic a minimum of 4 months. That's how long it takes for all your blood cells to die off and be replaced. I'm on them for 6 months.

Too, if you do have Lyme, your liver is already under great stress. Make sure you get rid of anything that may stress it further: food coloring, msg, preservatives, the chemicals in tap water, etc.

Keep in mind that the vast majority of info you'll find is from the govt - and they don't acknowledge how wide-spread Lyme is either. Much of the info you find will be innacurate, though it will be sprinkled with truth. Be careful.

And don't let anyone tell you a lack of the bulls-eye-rash means you don't have it. I think it's only about 30% of Lymies who ever get any rash.

I don't mean to sound like an alarmist. It's just that if you DO have Lyme, you DO need help - and quickly. The most accurate source of info will be other Lymies.
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Old 12-10-2007, 05:40 PM
 
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Thank you, that helps a lot...I also heard something about Bowen's labs from Florida, that they were good as well? As far as finding a Lyme-literate MD, I'm kind of stuck right now as far as cost goes. I can pay for testing out of pocket (I have state insurance and I'm fairly positive they won't cover anything of that nature, because all testing would be out of state), but I'd have to really try to find a way to get out of state...although I DO have some relatives in Florida who might possibly help. I've also been looking at this website for information www.truthaboutlymedisease.com

Bethany, crunchy Christian mom to Destiny (11) Deanna (9), and Ethan (2)

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Old 12-10-2007, 06:56 PM
 
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Angelpie,

I looked briefly at that site you linked to. It looks unusually good! Glad you found it.

I've never heard of the FL lab. 'Fraid I can't give info on it. I do know of a Lymie who lives in FL and has become a self-taught expert. We've never met, but I had a 30 min. phone conversation with her anyway. She hardly knew who I was but was adamant about trying to help me. Shall I see if I can get you 2 in contact?

Being financially stuck isn't the end of the world - IF you get those antibiotics and stay on them a long time! Only IF! You've really got to find a way.

Too, antibiotics won't kill the Lyme that's in your brain. Lyme crosses the blood-brain barrier, but meds don't. Lyme can "hide" in your brain as it's killed off in the rest of your body, then come out and reek havoc again. I've heard that there are essential oils that can kill it in the brain - I'm on primrose. (Check me on this detail though regarding how to get it out of the brain.)
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Old 12-10-2007, 07:01 PM
 
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It's definitely worth a shot to get in contact with someone who has the expertise..that would be great!

Bethany, crunchy Christian mom to Destiny (11) Deanna (9), and Ethan (2)

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Old 12-10-2007, 07:05 PM
 
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Ok, I'll send her an email explaining and asking if she'd mind her email address being on a public place.
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Old 12-10-2007, 07:09 PM - Thread Starter
 
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I esp agree with this part.


Quote:
No matter what your story, you remember the bite, you don't remember any bite, you are obviously searching for answer to your symptoms. If you have had "normal" test results or test results that don't quite fit your symptoms (the only test result I had that was "off" was my cortisol was high, my Md, thought he had struck gold, but he was very wrong) or if you have been diagnosed with any of the following (this is only a partial list), please consider seeing a LLMD (Lyme Literate MD) to rule in/out Lyme Disease: Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystitis, GERD, Acid Reflux, Fifth Disease, Multiple Sclerosis, scleroderma, Lupus, early ALS, early Alzheimer's Disease, Chron's Disease, Ménières syndrome, Reynaud's Syndrome, Sjogren's Syndrome, Irritable Bowel Syndrome, Colitis, Prostatitis, Psychiatric disorders (bipolar, depression, anxiety, etc.), Encephalitis,Sleep disorders, Thyroid disease and various other illnesses. Any multi-symptom, multi-system issues, Lyme must be considered.
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Old 12-10-2007, 07:40 PM
 
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Originally Posted by PrayinFor12 View Post
Ok, I'll send her an email explaining and asking if she'd mind her email address being on a public place.
You can PM me her email address if she would feel more comfortable with that.

Bethany, crunchy Christian mom to Destiny (11) Deanna (9), and Ethan (2)

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Old 12-13-2007, 03:31 PM
 
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Ok, Ladies. The woman whose email address I was hoping to offer says that's fine. But she doesn't want the email actually in the forum.

Angelpie, I know you need her help. Anyone else? I'll PM it to you.
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Old 12-15-2007, 03:24 PM
 
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subbing.

I was diagnosed with Lyme in April 2007. I had no idea that I had it. I did know that since the summer of 2006 I was exhausted, irritable, and unable to concentrate.

In March, my knee swelled up to twice its size and I could barely walk. After a visit to the orthopedist - and no improvement after a few weeks, he tested me for a variety of things. He called me personally to tell me that it was lyme.

My GP did 2 blood tests - western blot and another, and put me on antibiotics for 3 weeks. While my knee is better, I am still exhausted, and still irritable. And PMS is wretched, both for me and my family.

Right now I try to drink red clover infusions every few weeks, and take C, calcium/mag/zinc, primrose oil and EFA's (when I remember.)

I am tired of having to write everything down so I can remember! Life is turning into one big post-it note for me!

And man, is it hard to read medical info when your brain is fogged! So while I am slowly trying to amass information, I am very grateful for your knowledge. Thanks for starting this thread.

Oh and what does the <3 mean?
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Old 12-15-2007, 03:32 PM
 
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Niblet, I also have everything written down. I have a very specific daily schedule to follow. It stays minimized at the bottom of my screen.
And <3 is a heart - turn your head to the right.
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Old 12-15-2007, 04:38 PM - Thread Starter
 
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Does anyone else have sleep intolerance? All my other symptoms (
for the most part ) are pretty manageable. I however , am a SLAVE
to sleep. Sometimes even large amounts of sleep are not enough.
This is a fairly new symptom ( few months ago ).

Wish me luck, I will be seeing an ILADS (international lyme association)
doctor. He is almost an hour away but i will count my blessings that
he is at least that close.

I am torn on the antibiotic issue...since if i get a positive I will
have had it several years.I firmly trust *certain* alternative
treatments for this however the people i know who have healed
have done so over a great deal of time.

No wonder they call them Lyme Warriors.
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Old 12-15-2007, 05:53 PM
 
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Moving to health and healing since this thread seems to be focusing on the care and treatment of lime disease:
Quote:
Though Finding Your Tribe was originally opened to help parents find each other based on their location we have welcomed tribe threads for parents of a like-minded path to meet and chit chat with one another. However, such threads should not take a focus of discussion for a topic that is hosted in an existing forum at MDC.

A natural course of chit chat discussion might carry you into discussing your daily lives and sharing events and struggles. But focused discussion of a parenting topic, a breastfeeding issue or problem, an activist or political issue, a religious concern or belief, just to name a few, should go to the appropriate forum for discussion with the larger MDC community. If you have any question in this regard feel free to check with the moderators before posting. Should you post or thread not be appropriate for FYT on this basis it may be moved to the appropriate forum.
FYT Guidelines

Flowers, fairies, gardens, and rainbows-- Seasons of Joy: 10 weeks of crafts, handwork, painting, coloring, circle time, fairy tales, and more!
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Old 12-15-2007, 11:53 PM
 
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Jeanne,
I don't have the sleep issue. I have noticed that extra sleep makes the relapses easier.

If you're seeing an ILADS doc, that'll likely be really helpful! I'm glad you're able to go. Mine (closest one) is 4 hours away.

As to the antibiotic, I've never heard of anyone healing without it. I'm not an expert, but I have talked to tons of Lymies. I'd be very cautious about avoiding the anti. It is powerful, but I think that's the point - Lyme is awful powerful too.
Let us know how things go at the doc.
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Old 12-16-2007, 12:19 AM
 
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Lymie here too!

I've been dx with it twice, my dh twice, and my dd has it right now. I found the nasty bloodsucker right on her neck vein!

Arrrgh! This disease makes me soooo freaking angry.

I am on antibiotics right now in the middle of my course. I may decide to go a month longer if my symptoms don't go away as much as I like. My doc is very supportive of me calling the shots.

I must say this last period I had was so much easier being on anitbiotics, I hardly had any PMS where I wanted to kill people! Anyone know why Lyme is connected with the bad PMS symtoms?

With the rate of lyme around here I may just stay on antibiotics for a while!

My aunt and cousin had undiagnosed lyme for a year or more and are still battling the pain. They've both been on many different types of antibiotics and still not seeing the pain dissipate. They do also see a specialist in CT.
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Old 12-16-2007, 12:57 AM - Thread Starter
 
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Quote:
Originally Posted by PrayinFor12 View Post
Jeanne,
I don't have the sleep issue. I have noticed that extra sleep makes the relapses easier.

If you're seeing an ILADS doc, that'll likely be really helpful! I'm glad you're able to go. Mine (closest one) is 4 hours away.

As to the antibiotic, I've never heard of anyone healing without it. I'm not an expert, but I have talked to tons of Lymies. I'd be very cautious about avoiding the anti. It is powerful, but I think that's the point - Lyme is awful powerful too.
Let us know how things go at the doc.

Some people have done it with diet, antibiotic herbs ( yes i know
still antibiotics), Salt tonic/Rife Therapy. One comes to mind
Dr. Ron who was able to heal himself w/o abx. But it takes allot
of perserverance you and you need to be diligent and have
all the right tools.

I hang out at Lyme Strategies on yahoo. But i fully respect those
going the abx route, i really do, its a nasty disease.
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Old 12-20-2007, 11:11 AM
 
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Quote:
Originally Posted by niblet View Post
subbing.

I was diagnosed with Lyme in April 2007. I had no idea that I had it. I did know that since the summer of 2006 I was exhausted, irritable, and unable to concentrate.

In March, my knee swelled up to twice its size and I could barely walk. After a visit to the orthopedist - and no improvement after a few weeks, he tested me for a variety of things. He called me personally to tell me that it was lyme.

My GP did 2 blood tests - western blot and another, and put me on antibiotics for 3 weeks. While my knee is better, I am still exhausted, and still irritable. And PMS is wretched, both for me and my family.

Right now I try to drink red clover infusions every few weeks, and take C, calcium/mag/zinc, primrose oil and EFA's (when I remember.)

I am tired of having to write everything down so I can remember! Life is turning into one big post-it note for me!

And man, is it hard to read medical info when your brain is fogged! So while I am slowly trying to amass information, I am very grateful for your knowledge. Thanks for starting this thread.

Oh and what does the <3 mean?

I only read so far on the first page when I saw myself....

I know not much abotu Lyme. For two years now I have been suffering with a multitude of symptoms and no help. I have been frustrated and crying and a wild banshee woman for 2 years. Oh yeah and in pain too.

2 years ago I gave birth at home to a healthy baby girl. One week after this is when I found the tick in my thigh. I screamed and told dh to get it out because I couldnt even look at the thing. i went right to the dr and she didnt even want to see it she said she would bet I have nothing to worry about. I insisted on showing her anyway and she said nope, no bullseye ring, no lyme. I went away thinking ok I am definitely fine.

a few weeks later I was limping, but not bad, just figured ok I have four kids and i am extremely busy. I was always tired. Always. But i forced myself to do things because I had to. I am a person who does not rest.

these have been what I have been battling for 2 years straight, not even sure if they are lyme related:

hyperthyroidism(which has corrected itself on its own, no thanks to beta blockers which caused an asthma attack...went to many different homeopaths, drs etc to find a cure for this too.)

palpitations, severe at times to where I was crying and convinced I was dying. All tests showed them come up, but that they were benign.

pain. Entire body pain, and when i dont have that, I have extreme hip pain to the point where I got an xray not long ago because i thought i hurt it ( i am a dancer). No one could find out whats wrong with my hip, they said maybe arthritis and get PT.

weird fever feelings with pain. When i got this at first, I said oh great i have a new baby and im getting the flu. Started on echinacea and vit c. My flu like symptoms lasted 24 hours and I was fine. This has been happening at least once a month. Sometimes weekly.

Leg and foot pain, sometimes hand pain. These pains are not debilitating, but are very bothersome. and they make me extremely tired. By the time night rolls around, i want to get into bed and have someone massage my entire body. i feel ike i need a massage hourly. i did get a massage not too long ago and it felt good for the time, but when i got up to go, I was still limping with hip pain. the hip pain comes and goes---comes on especially while sitting for long periods of time, when i get up I almost fall but then as i walk it out it gets a little better. still not 100% but at least i can walk.I feel every night like i have gone 10 rounds with someone and they won. seriously...and you know what I feel like a hypochondriac.

Painful periods and RAGING pms. RAGING. I cant even begin to describe how this has worsened in the last few months. I am a raving lunatic lately and so frustrated because i couldnt pin point exactly what was wrong with me. Does lyme make you nuts, because i certainly am at times. I am taking fish oil only because I read that may help with my moods, and it does on and off. Some days it doesnt matter, but it did take a great edge off.
'
Muscle twitching. Right now, the last 2 days, my eye has been twitching so badly that it is forced closed. Then my eyes tear and its so annoying. Its only one eye, but not cool when driving.Other muscles that are twitchy are legs and arm.But not that bothersome at all. just annoying lol.

Depression. On and off. I had PPD after my baby was born and i never ever had it with my other kids. not sure if this is related to lyme--i have no clue about lyme really. im on here trying desperately to get help before my dr appt today. I was diagnosed yesterday my labs came back positive.

Memory loss---oh gods this is horrible. I thought it was just because i was getting older, doing too much and have lots of kids. i cant remember crap. some days are better than others. in my dance routine, I am having difficulty some days on remembering what comes next. i was never like this. songs I know the words to---suddenly i am at a loss. I cant even remember where I put the baby wipes 4 seconds ago and it frustrates the hell out of me. I will sit and cry and cry and have a total fit because i cant find where I JUST LAYED THEM! then i will find them in an odd spot and not remember putting it there, or question, why do I put things in places like this that are not my normal places?

Meltdowns. for 2years my meltdowns have gotten really bad. I will just fly off the handle for no reason. PMS is a horrible horrible time lately. Its just getting worse.

Strep. I have gotten strep 4 times in the last two years. I have NEVER ever had strep in my entire life until when my baby was 3 months old. and it was brutal. Last time i had strep was april of this year. I can feel im due to get it again. I just know when somethings brewing. and somethings been brewing for 2 years and ive been out of my mind trying to figure it all out. Thankfully someone here on mothering mentioned a few months ago i could have lyme..otherwise i would not have thought to test.


when i first got bit i didnt have many symptoms. slowly its been increasing over the 2 years. Over the last few months I have developed the hip pain..the body pain and weird fever feeling (never actually getting a fever--though sometimes I did) i had since 2 weeks after getting bitten. The last time i had the flu symptoms was 2 weeks ago. I laid in bed after dance (seems that after dance is when I get sick for some reason) and felt my heart pounding and a fever felt like it was coming on and my entire body felt like i had been severely beaten with a meat mallet. I said oh well im getting the flu or a bad virus...i told dh get the tea ready lol. But by morning, i was fine (aside from the normal pain that has become my normal life.) and just said ok it wasnt getting sick, just one of those weird fever pain thigns. Dh said i felt a bit warm that night too so maybe i did have a fever.

the dr i am going to is not my normal PCP. i dont even know this guy but ill go see what he says because i need to figure out what my options are. But i came here first to see what my real options are. Left untreated can it really get bad? i dont want antibiotics. I dont. I hate taking pills at all, i have anxiety and get really sick with worry. I dont want to be allergic to something either. I really hate this.

I am still nursing my 2 year old...should I test her for lyme? should i test my entire family? my dd was bitten years ago by a tick...i will test her. my tick was different though dont know if it matters, but mine was tiny tiny and had not blown up...dd's was huge and had blown up. i had brought her to dr back then and they told me same thing that no bullseye no lyme. Bull is what i say. i dont trust doctors in the last 2 years anyway since i have become empowered in taking my health into my own hands. But now I am just at a loss. That dr who told me the no bullseye crap we left when my baby was 1 month old. I just didnt like her and she was trying to force me to vax when i didnt want to.

where do i go from here? i visited that website someone had posted in the first set of threads. My hands and wrist are hurting from typing so much(i am a writer and have been typing since i was 6 and never had this pain till recently) so i am going to go...but i need to be armed with knowledge. I need to. Just seems like every month or every couple of weeks some new symptom comes up. I felt like a freak in my body not knowing what was going on with my body. I knew that something has been wrong and have yelled at doctors when they said well we can do this and that but basically you are healthy. yeah im healthy BUT SOMETHING IS WRONG!

i am glad i found out that I have Lyme. now I may know why i have been so crazy...i sure hope this is an effect of lyme...otherwise I really am going nuts. Oh one more symptom I just remembered...for over a year and a half, its been increasingly hard to button buttons and snap snaps on the baby's outfits. I cant even open pickle jars and my fingers sometimes just wont do what i need. ugh.

Again i am glad i found out. Now i have something to say ok this is real, this is not anxiety, this is real, its concrete. Something is wrong and I am going to continue to fight. I dont ever rest or slow down unless its bad...sometimes it is pretty bad, the pain but i keep going because i have to and love to dance. the only time its knocked me down was when i had strep. I didnt even know where i was or care. Alli i know is i was literally knocked down onto the couch and stayed there. I wont ever stop moving.

Mamma to my four wonderful, amazing and unique children~~Wife to my true soulmate who sees things the way I do, together we are truly a team!
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Old 12-20-2007, 12:01 PM
 
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Doulajewla, you said you don't know much about Lyme. I'll throw in some details...

Quote:
Originally Posted by doulajewla View Post
I insisted on showing her anyway and she said nope, no bullseye ring, no lyme.

Almost every doc would say this. Very few docs know anything about Lyme. I hear only 30% of people with Lyme ever get the rash. I never even found a bite.


My flu like symptoms lasted 24 hours and I was fine. This has been happening at least once a month. Sometimes weekly.

"Once a month" - Lyme relapses about monthly. For me it's been every 6 weeks. It causes pain both when it's alive and when it dies - it only eases after it's been dead or dormant a while.

Because of the going dormant/relapsing thing, there's only one day a cycle when the Lyme can be killed (antibiotic).



Does lyme make you nuts, because i certainly am at times.

Yes. Definitely. That's also the memory loss you mentioned.







Strep.

Are you sure it's strep? Could it be a relapse? Keep detailed and dated notes so you can find patterns.

If it is strep, remember that your whole body is under attack. Your immune system is freaking with all the toxins the Lyme is producing. So that lets you get sick mighty easy.



Dh said i felt a bit warm that night too so maybe i did have a fever.

Lyme can cause a fever - doesn't always.


Left untreated can it really get bad? i dont want antibiotics. I dont.

Yeah, it can kill. More often, you end up maimed. Seriously. Take the darn antibiotic. It's WAY better than your other options.

It takes 4 months for all the blood cells in your body to be replaced (Lyme lives in the blood.) Because of that, you'll need a broad-band antibiotic for atleast 4 months. Beg plead and demand till you find someone to write the prescription. Remember that most docs know squat about Lyme. It'll be up to you to find the treatment you need.


I am still nursing my 2 year old...should I test her for lyme?

Yup - mainly because she's young and can't tell you her symptoms. Watch the rest of the fam for symptoms. Remember that if her test comes back negative, it doesn't mean a thing. Only positive tests mean something
.

my tick was different though dont know if it matters, but mine was tiny tiny and had not blown up...dd's was huge and had blown up.

No diff - yours was a nymph. So was mine.


i dont trust doctors in the last 2 years anyway since i have become empowered in taking my health into my own hands.

Awesome! You're gonna need that!

where do i go from here?

ILADS - those are the docs that have a clue. But you'll still need to learn, study, research, and question.

now I may know why i have been so crazy...i sure hope this is an effect of lyme...

EVERYTHING you listed is a Lyme symptom. Really.

You said your doc appt is today (Thurs)? Write on here again. I'll keep an eye on the thread so I can answer you. I'm sure other Lymies will too. You'll find that your absolute best source of help is other Lymies.

Just knowing what's on this thread, you're likely to know more than your doc. Be confident. Stand up for yourself. You really can get better!
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Old 12-20-2007, 12:42 PM
 
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Thank you so much, that post has helped me really feel validated in my feelings that I have been having. knowing that others have experienced this makes me feel better. I called this woman I knew 2 years ago, she let me rent her aqua doula and i remembered she had Lyme. she did the antibiotics too and some probiotics along with it and some other things like homeopathy. I trust her judgement too and if shes saying take the antibiotics, (and shes ultra crunchy...that why I went to her)then I should consider it. I didnt know Lyme could kill.

Sometimes it seems that my symptoms are not that bad, so I keep thinking do I really NEED to do something about it? I know I do--because just in the last few months, i have been deteriorating fast. my hips are getting worse and those body aches are all the time. And my moods---i wont even get into that. Of course memory too. i just hope I can remember cat food today!

I did have strep those times---i tested positive for strep each time. And man did it hurt! i dont know if it was worse because i have lyme or what, but i was suffering so badly with the strep. it was sooo incredibly hard.

I will post back later. I do know the dr wants me on a strict antibiotic therapy for a while. Just dont have details yet, but i will later

Mamma to my four wonderful, amazing and unique children~~Wife to my true soulmate who sees things the way I do, together we are truly a team!
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Old 12-20-2007, 01:07 PM
 
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Quote:
Originally Posted by doulajewla View Post
Thank you so much

You're welcome! Other Lymies jumped forward to help me too.

she did the antibiotics too and some probiotics along with it and some other things like homeopathy.

Me too - I'm on like 15 dumb supplements a day. But it's helping.

Sometimes it seems that my symptoms are not that bad, so I keep thinking do I really NEED to do something about it?

Those times are likely the times between relapses.

Of course memory too. i just hope I can remember cat food today!

The memory thing is a sign that the Lyme is in your brain. Lyme can stay dormant in the brain while the antibiotics kill it off in the rest of your body. You'll need to take something that can cross the blood-brain barrier along with the antibiotic. (And good luck to kitty. )

I will post back later. I do know the dr wants me on a strict antibiotic therapy for a while. Just dont have details yet, but i will later
Look forward to hearing back from you. I'll help as much as I possibly can. I doubt I'd be alive now if it weren't for others jumping in to help me. I realize that sounds melodramatic - really not though. Good luck today.
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Old 12-20-2007, 02:17 PM
 
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I have a lot to write when I have more time, what I want to say now is this:

How is it possible that there is a quick, accurate Lyme test for dogs, and a vet will not hesitate to prescribe antibiotics for a whole month if the test is positive, yet we HUMANS who are suffering can't get a diagnosis or treatment?
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Old 12-20-2007, 02:54 PM
 
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Flutemandolin,
There is? Really? Are you sure it IS accurate or do they just say that. I mean, they say that about the human tests too.
If that info is right, I totally don't get it!
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Old 12-20-2007, 03:06 PM
 
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The Politics of Lyme

http://healthhacker.org/satoroams/?p=675

http://query.nytimes.com/gst/fullpag...55C0A961958260

http://www.anapsid.org/lyme/


Where to Get Help

http://www.ilads.org/

http://www.aldf.com/lyme.shtml
(This last link has good info, though the recommended length of antibiotic treatment is way too short.)
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