posted
I'm new to the forum. Like many of you here I have been to many doctors trying to find out what's wrong with me. It stated in Sept 04 with 2 brief episodes (5 minutes each)where I lost coordination on the right side of my body (perhaps a type of ataxia).
Gallbladder attack and removal in late Sept. Trouble concentrating and muscles aches in the Fall. Diagnosed with hypothyroidism in Dec.
No improvement even when I reached the right thyroid level. Muscles aches, cramping, twitching, burning sensation in the middle of my back, odd sensations on my scalp and face, eyes would sting periodically, hands hurt on and off as do the feet, emotional, brain fog, just started with mild achiness in the knees, etc.
I finally learned more about lyme disease and realized that my negative ELISA meant nothing. I found a lyme knowlegeable doctor (not an LLMD). It was the best I could do to get a quick appointment.
He suspected lyme just based on my symptoms and started my on 2 abx (tetracycline & omnicef) which I have beeen on for 11 days. PCR test he did was negative. He wants to see how I react to the meds. I asked about the western blot but he did not think it was necessary at this time since lyme is a clinical diagnosis and even if the test was negative he would still recommend the abx treatment.
I haven't noticed a significant flare in symptoms which would convince me that this is definitely lyme.
Does this sound like lyme? Should I push harder for the western blot? He is suggesting 2-3 months of abx to see if there are any flares or improvements in sympotms. I'm just concerned about being on high doses of abx if it's not lyme. He want to switch to doxy when the tetra runs out.
I guess I would just like to see some convincing evidence that it really is lyme. Any thoughts/opinions.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Definatly sounds like lyme symptoms were you ever bitten by a tick?
Your PCP said >at this time since lyme is a clinical diagnosis and even if the test was negative he would still recommend the abx treatment.<))Sounds like a good PCP maybe he could consult with LLLMD one who's been doing it for a long time. Also read and print him off a copy of Dr B's treatment guidlines.
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. Support Links LLMD's
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
double post whoops
[This message has been edited by treepatrol (edited 17 August 2005).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
| IP: Logged |
ticked in ri
Unregistered
posted
I did not see a tick on me or see a rash. I also don't recall flu like symptoms. I'm guessing if I was bittn by a tick it was last summer. I seemed fine up until early Sept. I know I had a tick in my head when I was a child which was about 30 years ago but I don't think it would be from that.
I am also concerned about the timing of this since I was breastfeeding my daughter when my first symptom appeared in Sept. She was about 6 months old at that time. I stopped breastfeeding in December. I don't know if I should have her tested. She 18 months old now.
posted
I must agree with treepatrol. This is a great PCP.. I am extremely impressed with the response.
Your symptoms sound consistent with lyme. You should read the newbie links regarding herxheimer/herxing. This may take just a little past one month of abx to take place.
You are just starting, so give it some time. Unfortunately, the increase in symptoms will make you want to go back where you started.
I'm blown away by the fact you've really been attacked within one month.
What about previous years and doctors visits for persistent infections or illness?
I was diagnosed in 96, treated with 1 mo abx. Symptoms started coming back in approx 2000 with sinus infections every few months. Ringing ears. 2001 Vertigo through 2003, skin would hurt, cysts under skin, face tingling and numbness, twitches. 2004 faint, ringing, vertigo, arms burning, then into severe backpain, hands cramped and could not grip anything, nausea, fatigue, moodswings.
Currently in 10th month treatment and feeling so much better.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by ticked in ri: I did not see a tick on me or see a rash. I also don't recall flu like symptoms. I'm guessing if I was bittn by a tick it was last summer. I seemed fine up until early Sept. I know I had a tick in my head when I was a child which was about 30 years ago but I don't think it would be from that.
I am also concerned about the timing of this since I was breastfeeding my daughter when my first symptom appeared in Sept. She was about 6 months old at that time. I stopped breastfeeding in December. I don't know if I should have her tested. She 18 months old now.
You said I was breastfeeding my daughter. I would definately be concerned about that. Also the original tick bite might 30 yrs ago may have contained a lesser virulent strain of lyme? who knows? I would definately keep getting treated because if it is lyme the longer you have it the worse it is to get rid of it.Thats its nature.Road Island does have a lot of lyme there.You may also have coinfections that ticks carry.
I have been bitten at least 70to 100 times and have dug ticks out that were really attached imbedded around 15 or so that I remember.
And never had a rash ever. But when I finally found a LLMD and he sent my Western blot and 3day urine test to Igenex
both came back Positive I had a couple of strains of lyme and coinfections.
I never had any bad fvers for years then I started getting them every 2or3 months like the flu except temps 105 and I also had minor aches to then years later it all started to develope into joint pain migrating around then shaky left hand then the right, dizzyness,tingleing,shooting pains,couldnt breath sometimes lungs felt half full, twitching muscles, then cognitive abilities went down the tubes.
You dont want this to get a grip on you read all you can and make sure the dosages of your meds are high enough and get on a cyst buster like flagyl which also works on other bacterial,& parisitic infections too.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
| IP: Logged |
ticked in ri
Unregistered
posted
lymster,
I really wasn't attacked all within a month. I was blessed with good health up until Sept 04. Just occasional colds here in New England. 2 good pregnancies & deliveries the last in Feb 04.
The ataxia episodes happened in Sept and later that month the gallbladder came out(probaly unrelated to lyme). I felt fine after that until late Nov. Then trouble concentrating and muscles aches in arms & legs. Dec 04 - hypothyroidsim diagnosed. The mild vague aches continued but it was blamed on the thyroid problem. Then boom! Late Feb 05 the aches got worse seemed to be affecting more muslces, tendons behind the knees were sore, cramping, twitching, eye strain, and it's seems to be one thing after another since late Feb.
Reading posts on this forum really motivated me to get to a doctor who knew about lyme quickly. It was actually through this forum that I found someone from RI who recommended this lyme knowledgable doctor to me. I know that he consults with an LLMD.
I'll be sure to read about herxing so I'm prepared.
posted
Doxycycline (a type of tetracycline) caused my symptoms to flare within about 12 hr. from the first dose. Omnicef took a bit longer (like 2 days) but it had the same effect.
-DS
Posts: 36 | From Summit, NJ | Registered: Mar 2005
| IP: Logged |
I had my daughter in 98 without knowing what I know now about the tranferrence of lyme. I knew very little and was very unconcerned when initially diagnosed prior.
I never had a rash, but moved from RI/MA to CT in 90. Always, always around horses and animals. I feel like I may have had lyme prior to the initial diagnose in 96... maybe around 92?
I've been to tons of docs and asked to have my thyroid checked/tested a lot in the past 4-5 years. Lyme can do that. I don't like to fall on it but it seems pretty consistent with what I've been learning. I would ask the PCP why my throat has been red for 7 years? Tests for strep? thyroid? back problems, meniere's, arthritis, oy vay
Congrats on your babies. You're busy. You may need help for a few days during the herx--should you have one.
Does your daughter have lyme? I don't think I had lyme before or during the pregnancy but I can't be sure. I did breastfeed my daughter so I am concerned. She seems ok. She has had good health outside of the croup a few times. I have noticed her rubbing her a eyes more over the past few weeks. She may rub then when she's tired but I notice her rubbing them occasionally at times when she shouldn't be tired.
Should I have her tested? What testing should be done?
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Hi ticked-
Welcome and sorry that you need to be here with us.
Some either notice less or have mild flares or herxes.
I always considered myself one of those people. I just ached all over all the time. But now that I'm so much better and mostly symptom free I do notice stiffness, pain and other symptoms on occation.
Your PCP sounds astute. I tested negative, presented with a positive clinical picuture and the ID wasnt even going to prescribe anything!!Go figure. I've been on doxy now 5 days no major herx yet. just make sure you take it with food.
Posts: 145 | From NorthEast US | Registered: Aug 2005
| 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!
Printer-friendly view of this topic