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Old 07-12-2006, 07:54 AM   #1
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Help! newly diagnosed!

Hi, my name is Lindsey and I am a 28 year old mother of 3 small children. I was diagnosed with Lyme disease 2 days ago. I notied I had a bug bite on july 2nd. It kept getting bigger untilthe 7th when it started making a large circle. I new about the classic bulls eye rash so I got a little nervous. I went to the doc and he said it was Lymes. Now I have a few questions because the dr didnt spend more than 5 minutes with me and I didnt get to ask about my other symtoms. About a week before I noticed the bite I started feeling very tired,headaches,achy knees and now my glands on the one side of my neck are so sore. Is this normal for the length of time I've had it. How long does it take for these things to go away? I feel awful and I just want to make sure this is normal. The dor put me on 500mg of amoxicillin for 21 days. Thanks!

Last edited by linzee311; 07-12-2006 at 10:00 AM.

 
Old 07-12-2006, 10:19 AM   #2
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Re: Is this normal?

Hi Lindsey.

I'm glad you caught the Lyme early. Thats a very good thing. Try to remember that even though you feel bad.

Symptoms for Lyme can vary from person to person and also the duration of treatment.

I can tell you that 21 days is not long enough to kill the Lyme bacteria. You need to be on antibiotics for more than 21 days.

500 mg also may not be a high enough dose.

Are you seeing a Lyme Literate Medical Doctor (LLMD)? Have you been tested for co-infections?

 
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Old 07-12-2006, 12:35 PM   #3
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Unhappy Re: Is this normal?

I haven't been tested for anything. He said there wasn't any need to do testing. He didn't spend any time with me so I'm not sure whats normal and whats not. I am glad I caught it early. All I know is that I definately haven't been feeling like myself. I read that breastfeeding can spread the lyme to the baby, I'm breastfeeding, so I called him and he said that wasn't true. I dont know what to think!

 
Old 07-12-2006, 01:04 PM   #4
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Re: Help! newly diagnosed!

Hi Lindsey, welcome to the board!

A bulls-eye rash is a definite sign of Lyme disease. It is important to get photos of your rash. Place something near it, like a coin or ruler, before photographing to give it size definition. Then you have evidence of it.

Please be aware that 21 days of treatment is not long enough for Lyme. From what I understand, an infection caught within two weeks of the bite should be treated with a minimum of six weeks of the proper dose antibiotic. The antibiotics kill the bacteria when they are reproducing, which is estimated at four weeks. Six weeks of treatment will cover one growth cycle. If symptoms are still present, further treatment is warranted. A longer infection needs longer treatment.

Lyme disease needs aggressive treatment, usually much stronger doses than for other infections. I do not think you are on a strong enough dose of Amoxicillin. I recommend that you read Dr. Joseph Burrascano's treatment guidelines. He is one of the top Lyme doctors in the country and many Lyme doctors follow his protocols. He discusses antibiotics and doses needed.

It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Are you located near Hermitage, PA? Is NJ closer to you? Let me know and I can recommend a doctor.

Lyme disease can be passed through pregnancy and breastfeeding. The best Lyme pediatrician in the country is Dr. Charles Ray Jones in New Haven, CT. Please call his office for advice. You may also want to call the Lyme Disease Foundation. The founder had a personal experience with Lyme and pregnancy.

It is very important to learn as much as possible. One book I recommend is "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks. It is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

The good news is that your infection is early. Getting proper treatment now may eliminate the chance of long-term complications. Please do whatever it takes to get to a knowledgeable doctor so you can get the help you need.

Hang in there okay? Good help is available and you are not alone.

 
Old 07-12-2006, 03:39 PM   #5
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Re: Is this normal?

Hey Lindsey

Welcome..As a newly diagnosed person myself,(June 26th) I can tell ya that those symptoms mirrored much of mine and are completely normal. I removed a tick from my waistline and my lymph node in my groin region (closest too the bite) was swollen and hurt quit a bit, it also left an EM rash...I felt like crap ( low grade fever, stiff neck, joints, headach,fatique, multiple rashes,etc,etc..) I've been on antibiotics for just over 2 weeks and am just now starting to feel as though my energy level is returning. In my case, I noticed an immediate difference within a few days of taking the RX ( things like the rashes fading and sore neck), but the fatique and sore joints really lingers,esp the fatique..

Sounds like you cought it early enough where you'll be just fine..I emphathise with your regarding docs attention and treatment. I only got the standard guidline treatment myself. After literally spending nearly a week reading and stressing over the diagnosis/treatemnt,etc. I found it can basically bve different for each case..I've read instances and personally heard from people who have made full recoveries off just a few weeks of antibiotics. I personally would rather take a highr dose for a longer period but thats an impossibility at the moment. Its no doubt frustrating, but your likely to feel better within days and much, much better in a few weeks...Take care of yourself, good luck!!

 
Old 07-15-2006, 02:00 PM   #6
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Re: Is this normal?

Hi, thanks for all that. I am having a hard time with this cuz I dont know anything about this. Is it normal to have swelling in the neck. It hurts so bad. Its in my gums on the same side and everything. My doc never called me back. I called him to ask questions and he never called me. Thats annoying!! iS the neck thing typical?

 
Old 07-15-2006, 02:32 PM   #7
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Re: Is this normal?

It sure can be normal to have neck pain. My initial symptoms included swolen neck lymphnodes, and my neck was so stiff I could hardly turn my head. I also had tingles/pains running up the back of my head, and down my spine.

If your doc won't call you back, it's time to find another doc...

Last edited by Bill S; 07-15-2006 at 02:33 PM.

 
Old 07-15-2006, 04:11 PM   #8
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Re: Is this normal?

Yeah I know. I'm getting more info here than from him. I was so upset the other day because I was having so much pain and My husband finally called the office to get someone to talk to me and now its 3 days later and no call. Thanks for the neck info. Its pretty scary,all this, I've always been pretty healthy,so this is a huge adjustment for me. I never take tylenol unless I absolutely have too and I've been taking it for about 2 weeks! Why is it that people (doctors) don't take this seriously?

 
Old 07-15-2006, 04:53 PM   #9
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Re: Is this normal?

Get a new llmd dr. I had major major neck pain/spasms in the early stages. Still have alot of trouble with my neck. Got so bad, I had neck surgery. Which didn't help. If I had only known then what I do now. My glands were also affected. If you can get a muscle relaxer that might help. I take flexaril.

I'm afraid to say that most drs don't take lyme seriously because it can cost them dearly. Insurance calls the shots. I talked with my LLMD this afternoon for a while (he called me about his water garden) he says Blue Cross is behind his problems.

We just have to keep trying to get the treatment we need. And this board is a wealth of information. Take care

Marsha

Last edited by Pearlscale; 07-15-2006 at 04:55 PM.

 
Old 07-15-2006, 06:19 PM   #10
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Re: Is this normal?

lilnzee311, Lyme and the co-infection Bartonella can both cause swollen glands. Please get it touch with a Lyme doctor ASAP so you can get the treatment you need. Lyme can be passed through pregnancy and breastfeeding. It needs aggressive treatment. Untreated or under-treated Lyme can be serious.

 
Old 07-16-2006, 12:20 PM   #11
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Re: Is this normal?

Thanks, I never heard of bartonella,the trouble here is that my husband was laid off,which means my insurance ended a week and a half before I went to the doc and got diagnosed. I dont know if anyone will even see me without a payment up front. We wont have insurance for a little while. I dont know what to do. I'll look for a doc anyway and see what I can find out. Thanks for the support. I've learned so much here. Lins

 
Old 07-16-2006, 03:02 PM   #12
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Re: Is this normal?

Hi Lins. I am sorry your husband was laid off. I hope he can find a job soon.

Dr. Chandra Swami in Hermitage, PA comes very highly recommended. I suggest calling his office and explaining your situation. Maybe they could work out a payment plan. Good luck.

 
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