merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Hi everyone. What a great site. I was diagnosed with Lyme today after 4 weeks of fevers, arthritis, muscle pain, Swollen Lymph nodes, headaches etc. I feel so terrible but I am sure I don't have to tell all of you. started my Doxy today. I just wanted to introduce myself. I am sure I will have a ton of questions. Thanks for a great site.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
posted
Well hey there Merrygirl!! We need all the merry people we can get!!
When were you bitten?? Got a real LLMD?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome merrygirl...
Are you from merryland?
Glad you found the site! It saves us from having to come over to your house just to talk. And you know how it is with gas prices these days... YIKES! Trying to get us all there and inside your home COULD be a problem.
Plus.. that Lyme tutu who just posted... you know... the one with the droopy drawers... well...
If you invite her over... HIDE THE ICE CREAM!!!
But don't tell her I said so... ok? It's OUR secret.
posted
ICE CREAM???!! Did conehead say something about ice cream?? Blue Bell, right?? Blue BELL, NOT Blue Bunny, OK?!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
bettyg
Unregistered
posted
welcome merry;
good thing you are a merry person or tincup and tutu would make you wonder about those 2 clowns who have many serious moments; this isn't one of them!
merry, i'll send you my private message, PM, of 57 pages newbie links, advise, symptoms, igenex tests, disablity, etc.....includes TREEPATROL'S NEWBIE LINK; over 1000 lyme archive info. sites!
we've got others from your professsion; recent one last month i believe.
IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Welcome Merry,
Do you know how long you may have had Lyme?
Are you seeing a Lyme Literate Medical Doctor?
Any possible co-infections?
What dosage of doxy are you taking?
Sorry to hit you with questions, but many people get the "standard" dose of doxy at 200mg a day
For 28 days, which is not nearly enough or long enough.
Glad you found your way here.
Watch the doxy and sunshine....it can cause some pretty bad sunburns.
Watch your diet....Low carbs, low sugar to keep yeast at bay.
Get yourself some good probiotics and supplements to help you on the road to getting well.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
W E L C O M E !*)!*)*)!*!)*!)!!!!!!!!!! !*)*!)*!)!*)!*)!*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Hi everyone. Thanks again for the support.
I am a Vet tech and my doc believes I was infected due to my work. I never saw any ticks
on my body. I am seeing an infectious dz doc who has been good to me so far. I am overwhelmed by the info on this site!
I live in SE Massachusetts. Lyme is pretty prevelant here and alot of or canine patients are inected as well.
I believe I have been infected for 4 weeks or so. That is when my symptoms started as described above. My doc put me on Doxy 100 mg every 8 hours. I have had 3 doses so far
I have been having many symptoms. Twitching, eye pain,joint pain, sore throat, fever, fatigue, I mean all of it. I am in so much pain. I feel debilitated. I am also the mom of 2 small active children.
I am not sure of any coinfections. My doc has run sooo many test, thousands of dollars in tests. I have been Lyme neg before so this definitely new.
My doc referred to it as acute Lyme dz. I had a CT scan (before my western blot was pos) of my neck, chest, abdomen, pelvis. It looks like all of my Lymphnodes are enlarged.
The biggest node is in my right arm. The epitrochlear node is over 3 cm. It may be getting biopsied just t o rule other stuff out.
Any advice is appreciated. I have been not so Merry.....What about pain control?? Thanks Melissa
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
posted
May you heal quickly. I'm glad you were dx'd so soon!
God bless you!
Posts: 65 | From Burbank, CA (recent) from Midwest | Registered: Apr 2007
| IP: Logged |
Cobweb
Unregistered
posted
Just when I was getting excited about a newbie getting diagnosed and treated right away I saw your comment about an infectious disease doc and thought -oh no.
Then when I read "My doc put me on Doxy 100 mg every 8 hours. I have had 3 doses so far" I thought "here we go again".
Keep reading-and especially look at Dr. B's protocol. 100mg Doxy every 8 hours is like spitting in the ocean to kill a whale.
Don't want to rain on your parade-but keep reading-and educating yourself-cause either you are going to have to educate your doc, or you are going to have to find an LLMD.(Lyme Literate Medical Doctor)
Just cuz a Doc is open minded about Lyme Disease doesn't mean he/she knows how to treat it. I think I heard a collective groan when you posted about seeing an ID doc and only getting 100mg every 8 hours.
Take Care-and keep coming back. Carol
IP: Logged |
bettyg
Unregistered
posted
merry, thanks for background on yourself; i thought it was job related when i read you are a vet tech!
pain meds should be covered in my newbie info i sent you; otherwise, look at TREEPATROL'S NEWBIE LINKS towards the front of 57 pages i sent you.
2 young ones; we've got other moms with youngins too so you can always have a specific post in GENERAL asking for tips/support from YOUNG MOMS!
IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I have to say I aim disapointed to hear that my treatment is not sufficient. I really like my doctor too. Its too bad.
I am looking into getting a LLMD. What is the right dose of Doxy?
How long does it take to feel a little better, or is that wishful thinking?
I still have a fever and all of my symptoms.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I have to say I am disapointed to hear that my treatment is not sufficient. I really like my doctor too. Its too bad.
I am looking into getting a LLMD. What is the right dose of Doxy?
How long does it take to feel a little better, or is that wishful thinking?
I still have a fever and all of my symptoms.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi merrygirl,
concerning: "My doc has run sooo many test, thousands of dollars in tests. I have been Lyme neg before so this definitely new."
When did you have a Lyme test? What kind of test was it? ...a Lyme titer, or Lyme antibody test? a Western blot test? Do you think you were infected some time in the past?
The Lyme tests are lousy. A negative test means nothing...doesn't mean that you do or don't have Lyme disease. A positive test is sometimes difficult to get, because many are immunosupressed and the tests are pitiful.
Get a copy of all your test results. Keep a medical file at home. It's invaluable.
Welcome, although I'm sorry you're sick.
Find a Lyme literate MD...you need it now before this bacteria does any more damage.
7 out of 8 of us have Lyme.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Welcome Merrygirl.
400 mg Doxy a day is standard.
That dose is needed to be bacteriocidal (killing dose); less is bacteriostatic (just inhibits but doesn't kill).
ID docs are famous for undertreating. A couple LymeNetter's have good ones but they're the exception, not the rule.
It would be rare if your doc actually tested for co-infections, such as ehrlichia, babesia, bartonella, etc.
It's more the norm to have one or more than not.
Your duck is likely just doing OTHER tests, not the proper ones. Also, a good specialty lab should be used, such as IGeneX.
You will likely experience a "herxheimer reaction" to the meds--increased symptoms. That's temporary; doesn't mean you should stop. Dying bacteria produce toxins and make you feel much, much worse before feeling some improvement.
I agree you should have an LLMD. You're in a zone of opportunity to wipe this out which you won't have again. An LLMD will generally treat you until you're two months symptom-free. A duck will only treat for 'x' amount of days, period. After that they'll claim you have "post lyme syndrome." In reality, numerous studies document the persistence of the bacteria after repeated antibiotics, but most ID ducks refuse to read those studies. In their recent Guidelines, in fact, they claim that any such studies must have been "lab error."
Yeah, right. Dozens of peer-reviewed studies, all apparently "lab error."
If I were you I'd post in Seeking a Doctor and find an LLMD. In the meantime ask your duck to give you 400mg a day of Doxy. Ask to be treated according to ILADS guidelines, not IDSA guidelines (that's "Infectious Diseases Society of America"). The choice should be yours.
Good luck, and come here often!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Well I had an illness about 1 year ago that I went to my primary care doc for. They treated me like crap and I hate them. I had Many of the same symptoms, so I am suspicious that I have had Lyme for a longer period.
Before they sent me to the ID doc every one just threw all different antibiotics at me just to see if I would get better. I didn't but I had 4-5 Western Blots before this one that was positive that were negative, The ID doc said that the antibiotics may have made the tests negative.
It turned out at the time that I had Toxoplasmsosis. Which was self limiting or so I was told. He had tested me for everything Zoonotic since I work with animals.
I finally felt better for a few months until 4 weeks ago. I felt similar to my previous illness except I have had much more severe symptoms and a constant fever. I thought it was the Toxo coming back, but the ID doc said he didn't thinks so. I felt sick after running myself into the ground.
My issue right now is this, I feel so sick. I was in sooo much pain last night that I was crying. I have several pain meds and I try not to take the one that works (vicodin) because I don't want to be a junkie.
I mean I know this is why there are pain meds, but I don't want to rely on medicine. I am on so many things.
I am on Zoloft for depression, Piroxican (NSAID), Provigil (for chronic fatigue/sleep apnea) I have to take Birth control because I have another Female disorder, The Doxy, Vicodin w/ tylenol as needed and I am sure I am forgetting something.
I have been debilitated. I have had a fever every day despite the strong NSAID and Vicodin with tylenol. The pain is unbelieveable. I am overwhelmed big time.
The ID doc called it acute Lyme. I have every symptom except the rash and known bite. I feel hit hard. Is that normal?
I have 2 small active kids and my hubby works 6-7 days a week. At least now it has a name and people just don' t think I am crazy. I really like my ID doc infact he does primary care to and I switched to him.
He has been so good to me and caring. He is the first doc to ever listen to me. He took care of my pain. Didnt' treat me badly. i will be honest I feel bad about leaving him for a different doc. I understand that I need the best and according to you folks he is not treating me appropriately.
He goes on vacation next week. Do you think I should bump up my own dose of doxy until my next appt? I know you are not docs but I respect your opinions. If it were you what would you do? I know I will have to wait for an appt with a LLMD for a while.
My last illness I looked into Dr. D in MA and it was like 2 months of a wait.
My doc might just bump up my dose if I ask him to he seems like he would. I am going to ask my for my records so I can do some research on my tests. I am sure I have coinfections, but doesn't the Doxy take care of most of them?
the only other tests that were elevated was CPK witch has to do with muscle damage right? It was 4 times the normal. I really feel like I should be in the hospital that is how bad I feel.
How does a doc determine if you need IV meds? I am so glad you are here to help me. I also have a small heart murmur which I am Very worried about. I am so sensitive to sounds, lights, heat,my eyes hurt, I just don't know what to do. Is this how you all felt? Sorry for the long post I am freaking out a bit.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
posted
I don't have anything earthshattering to contribute beyond the good information people have already given you.
What I can say is welcome to our board. There are alot of wonderful supportive people here who will help you along your way. Good luck with an early diagnosis and proper treatment. Post your questions, we will help you and keep us posted.
Better Days are ahead!!!
Posts: 719 | From Delaware | Registered: Jan 2006
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Why is there so much controversy? I mean if what the LLMD's do is effective and helps people why are not other docs doing the same? It makes me so mad!!!
I truly feel disabled. I am supposed to work tomorrow and I know I can't and shouldn't even try. I have missed so much work.
I worked last Monday because it was one o my mandatory holidays and I was in agony. I had sweat dripping down my face and chills and pain.
I mean I am only part time and my boss is very understanding and I have notes to stay out if I need to. My job as a vet tech is demanding. Lifting wrestling animals around, drawing blood etc. I have to calculate doses and me on my game. Hell I can't even remember what meds I have already taken for myself. I am so not normal.
I know it is in my brain. I can't think or make decisions. I forget what meds I have taken, what I went into a room to do, cant find the right words. I have been twiching. I can't put animals lives at stake, so I am going to have to call in sick again.
I love my job and I am good at it and it gives me time to get out of my house because if it wasn't for my kids I would never leave it. I am super depressed.
I have already been to the ER WHICH I HATE THEM too, and they did nothing for me. My doc is on vacation.
I am considering going out on FMLA. Will I feel better soon? Do you think I should go out on FMLA?
My doc did explain the Hex reaction thing. I don't thnk it has happened yet.
I am so sorry to ramble but no on else understands this and I am soo sad I am crying. I think I will bump my own dose and hope for the best. I have refills on the Doxy and ways to get more if I need it. I think I am losing my mind....
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
quote:Originally posted by merrygirl: Why is there so much controversy? I mean if what the LLMD's do is effective and helps people why are not other docs doing the same? It makes me so mad!!!
I truly feel disabled. I am supposed to work tomorrow and I know I can't and shouldn't even try. I have missed so much work.
I worked last Monday because it was one o my mandatory holidays and I was in agony. I had sweat dripping down my face and chills and pain.
I mean I am only part time and my boss is very understanding and I have notes to stay out if I need to. My job as a vet tech is demanding. Lifting wrestling animals around, drawing blood etc. I have to calculate doses and me on my game. Hell I can't even remember what meds I have already taken for myself. I am so not normal.
I know it is in my brain. I can't think or make decisions. I forget what meds I have taken, what I went into a room to do, cant find the right words. I have been twiching. I can't put animals lives at stake, so I am going to have to call in sick again.
I love my job and I am good at it and it gives me time to get out of my house because if it wasn't for my kids I would never leave it. I am super depressed.
I have already been to the ER WHICH I HATE THEM too, and they did nothing for me. My doc is on vacation.
I am considering going out on FMLA. Will I feel better soon? Do you think I should go out on FMLA?
My doc did explain the Hex reaction thing. I don't thnk it has happened yet.
I am so sorry to ramble but no on else understands this and I am soo sad I am crying. I think I will bump my own dose and hope for the best. I have refills on the Doxy and ways to get more if I need it. I think I am losing my mind....
Posts: 22 | From Texas | Registered: May 2007
| IP: Logged |
posted
Sorry, I accidentally quoted you in an attempt to respond. I'm internet illiterate.
I have all kinds of wacky symptoms and no definate diagnosis. I had a positive Lyme Antibody test and that's it.
How do I get a diagnosis??? They have ruled out everything else. I don't know what else it could be. My Infectious Disease Doc thinks it might be Neuro-borreliossis???? But says it's difficult to prove.
He wants to do a Lumbar Puncture! Is this necessary?
I'm military, so I'm stuck with whatever docter they give me.
Any advice???
Posts: 22 | From Texas | Registered: May 2007
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Merry, you said: "I am sure I have coinfections, but doesn't the Doxy take care of most of them?"
NO.
Ehrlichiosis, maybe.
Bart and Babesia -- no. Bart needs Cipro; Babesia is a red blood cell parasite (not a bacterial infection like lyme); it needs anti-malarial meds.
You sound very neuro-lyme-ish to me.
However, it's possible to recover on a GOOD regimen of orals. An LLMD might prefer IV. Sometimes orals are tried first.
Kevin: What ID docs tend to disregard is the fact that borrelia burgdorferi is found in spinal fluid less than 20% of the time in patients with proven lyme.
Now, given that you've had a positive lyme test, I can't see any reason to get a spinal tap. I doubt an LLMD would ask for one since he knows the odds. Your ID duck will act as if it's the ultimate test for lyme and may even call your positive test a "false positive" if there's no lyme in your cerebrospinal fluid.
WRONG.
Both of you guys need to get with LLMD's fast!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Merry,
My dose of doxy was 300mg a day as per LLMD, however I only weigh about 105lbs.
The pain may get worse---a herx reaction.
I am glad you found someone to diagnose you....that is part of the battle.
You need someone very knowledgeable about Lyme disease and co-infections to treat you.
Hang in there. It is a bumpy ride.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
Hi Merry, So sorry you're having such a rough time, but I'm glad you've found this group. They've been wonderful to me and helped in so many ways.
Most of us do not have medical training, but we're willing to share info we've learned from our experiences with Lyme & other Tick-Borne Diseases (TBDs). Some years ago, I was diagnosed with Lyme, Babesia, & Bartonella. Now, I'm waiting for test results about other possibilities.
I recommend you look on the left for Support Groups and contact those near you. The Lyme patients in your state will be a great source of info about drs....and yours in particular.
You need a doctor who has lots of satisfied LD customers!!!
Did your dr say how long he plans to treat? Is he planning to increase the Doxy as you progress?
In reading all that you wrote, I think it's likely that this is not a new case of Lyme. Your symptoms are all typical of LD, but I don't think all of these could develop that quickly, especially the arthritis.
It is likely an established case of Lyme with possible co-infections, especially Bartonella. Having that many lymph nodes enlarged may not be from LD. That's one of the main symptoms of Bartonella.
Other Bart symptoms include flu-like symp, fever, muscle/joint pain, chills, insomnia, etc. Doxy is not the drug of choice for Bartonella.
Print "Diag Hints & Treatment Guidelines..." at www.ilads.org/burrascano_0905.html Bartonella info begins on page 23, but you need to read all 33 pages of info.
Since you like this dr so much, he may be willing to work with a LLMD in treating you. However, some drs do not want to admit that they are not fully informed about every illness.
We'll be glad to help you in any way that we can. Sending a big group hug. Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Eek!]](eek.gif)
![[woohoo]](graemlins/woohoo.gif)
Did conehead say something about ice cream?? Blue Bell, right?? Blue BELL, NOT Blue Bunny, OK?!
![[Wink]](wink.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic