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Old 08-28-2007, 03:42 AM   #1
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I'm sorry-More questions

HI:

Was bitten 7-22-97 same day Jim took the tick out of my neck, easy to pull out small, very small light brown, was not fat from feeding. 8 days later started with the pin and needle feeling and burning chest feeling. Went to the doctor. Plus very bad upper shoulder and neck pain.

He has tried Doxy (can't take it) tried something like doxy (Beginngs with a m) can't take it. Can't take anythining like ****o, ZItromax, or Sulfa drugs. I'm am pretty much allergic to all meds. He is still having me try Amoxcillin but I have to take bendrly with it as it causes a lot of reactions no hives.

I went to him yesterday, he is going to send me to a specialist in Highland park IL, to find out what is going on. I have had blood work for lyme and all co-infections all negative-re-running it again. The only test that came back bad was my thyroid so I'm going for a thyroid uptake scan.

Does ANYONE know what other pill I could take for lyme that is not in the family of the above???

I'm the one getting married 9-15-07 I have no energy to even get out of bed. Our honeymoon was Rivera Maya in Mexico Jim cancelled that yesterday, he does not feel we should go, thank go we bought the insurance and did not lose $5,000.

This should be the HAPPEST time of my life, and all I do is cry and feel awful.

Thank you for all your help, I print out a lot and bring it to him, he thought all the information is wonderful.

p.s. I wanted flagyl (that I can take) but he said at this time it would not help, is that true???

Julie

 
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Old 08-28-2007, 06:26 AM   #2
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Re: I'm sorry-More questions

Good day Julia!

Thought I would just say that I also "never" could get a positive by CDC or Igenex standards for Lyme. Some of us from what I am learning just can't. I heard an interview by Dr. Stephen Harris who is the son to the Dr. Harris at Igenex he states that in alot of cases the bacteria (s) do not like oxygen. So they imbedded in tissue and other body parts ...So some of us just don't "ever" get a positve. I imagine this is why doctors have to go on symptoms and not by test.. So what I understand is the best way of testing would be DNA. This is what I understood him to say.

Also I went through what you are going through with the med's. Since I didn't have any positives...just some bands...the doctor I saw would put me on something and WOW did I ever react...then we just kept trying...When I look back I wonder if what I was going through were HERX"S. I didn't know about them back then. think we finally just kept me on something and I rode through all of it. So just a thought maybe after the wedding just stick to something and fight through the herx's.

I will keep you in my thoughts and prayer's that on your Wedding Day you will feel happy and able to enjoy your day!

Sounds like you have had this crap o la a long time. Which in turn it will take a long time to start feeling better. Have you tried a picc line yet? That might be someting to help kick this in the bud....

Hugs to you...


 
Old 08-28-2007, 07:20 AM   #3
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Re: I'm sorry-More questions

Hi:

First thank you so much for the prayers....I truly appreciate them so much you will never know.

No its not Hexing, I have had this problem all my life with drugs. Cipro put me in the hospital for 10 days I almost dies after ONE pill...Zitromax makes my heart go crazy and my body total numb. Sulfa makes my joints hurt so back I could not drive for two weeks. Doxym. makes my hands and legs numb and very dizzy. All my doctors have such a hard time when it comes to drugs. They are also going to send me to an allergiest. Something about they decentsive your body to drugs. I have no idea what they are taking about.

Plus all the pills mess up my stomach, I had a Nissen Fundolpation for heartburn 4 years ago, and I don't have the ability to throw up, so its very scarey for me at this time.

He wants me to stay on the axomicillin until he can get me into the specialist, but I have to stay on bendryl and I'm very out of it. No hives just tingling and numbness in my hands, drives me up a wall, if Lyme does not kill me the pills will.....

I got bitten July 22, 2007 so I'm still pretty new in this, hopefully they can find a drug I can take. I pray for this day in and day out.

Yes, Jim is being very supportive of all this, he is a wonderful and caring man, I'm very lucky and thank god everyday for him. I know he was dispointed about the honeymoon but never showed it to me.

Again, thank you for all your support.

 
Old 08-29-2007, 11:39 AM   #4
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Re: I'm sorry-More questions

Hi Julie, Sorry you feel so bad and can't take antibiotics. Did your doctor do a HNK panel 1 (CD57) test by Lab Corp Lab. This is a fairly new test for lyme disease. If your CD 57 count is below 60 the test is considered positive. Also, It is documented that if you get in a hot tub with a temperature of 102 -104 for 20 minutes or more this can help kill the lyme bacteria. Questions are welcome on this site keep them coming if you have them. Take care, Leb

 
Old 08-29-2007, 02:05 PM   #5
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Re: I'm sorry-More questions

Hi Julie. I am very sorry about your honeymoon. You will make it up when you feel better.

I think going to an allergist sounds like a good idea.

Flagyl treats the cyst form of Lyme. I believe the cyst form occurs in chronic Lyme, not in a new infection.

Didn't you say you have an appointment with a Lyme doctor? When is it?

Dr. Burrascano lists the different meds to treat Lyme in his 2005 Diagnostic Hints and Treatment Guidelines for Lyme and otehr Tick Borne Illnesses (on-line).

Hang in there okay?

 
Old 08-29-2007, 03:08 PM   #6
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Re: I'm sorry-More questions

Thank you all for the help.

Yes the honeymoon is over before it even began. I pray to god everyday to let my wedding day be a good day for me.

I printed out the "new test" and will bring it to my doctor. I'm waiting on all the other blood work results should have them tomorrow.

Can I ask, what do they do for people like me that can't take any of the drug listed?? Does anyone know???

Also how long will it take if they can find a pill to work for this to go away? Again I was bitten on 7-22-07, so its only been a month and 1/2. Ticker, how long have you had lyme, it sounds like a very long time. I feel for all of you so much you have no idea. I have so many people praying for me, I hope the good lord hears them.

Also, (sorry another question) I'm crying so much lately, its not like me, is this normal??? Poor Jim, he walks around with a box of kleenex pulling out sheet after sheet for me. I feel for him so much. He has been through many illiness with me. I'm marrying a wonderful man.

Again, I can't thank you all enough for your support and help.

Julie

 
Old 08-29-2007, 03:10 PM   #7
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Re: I'm sorry-More questions

It is documented that if you get in a hot tub with a temperature of 102 -104 for 20 minutes or more this can help kill the lyme bacteria. Questions are welcome on this site keep them coming if you have them. Take care, Leb

Leb: So if I get into a hot tub, I will feel good again...Hell I'm going next door they have one, I will sit in it until I melt...

 
Old 08-29-2007, 03:30 PM   #8
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Re: I'm sorry-More questions

Hi Julie. I have had Lyme and four co-infections. That is why I am always recommending that everyone get tested for them. If I would not have been tested for them, I would not be here now.

There are several different oral and IV antibiotics that can be used to treat Lyme. You may do better with IV.

Do you have an appointment with a Lyme doctor?

Regarding hot tubs and hot baths, be careful. Depending on where you are in treatment, they may make you worse. Detox baths should be warm, not hot. I suggest trying the tub or detox bath for just a few minutes to see how you respond.

 
Old 08-29-2007, 06:31 PM   #9
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Re: I'm sorry-More questions

Hi:

Again thank you...

No I was kidding about the hot tub, I would never do that....

detox bath ? What is that about?? I will try it...I never use hot, hot water in my tub, makes my skin to dry...Yes I'm getting old will be 48 on 9-13. At the moment I don't feel 48 I feel 98.


There are several different oral pills. I looked at the site you spoke of and all the pills I can't take. Cipro, Zitromas, Sulfa, penicillin, etc. Do you know of any others I might suggest to my doctor.

Yes, I put a call into that Lyme doctor in Milwaukee WI, I have to call back after 9-1 as he is moving. However as of 9-15 I will be on a PPO and Jim told me that Northwestern Downtown Chicago has a good doctor that knows a lot about lyme.

Since I'm early in this awful thing, will it be hard to treat?? My main complaint is the back of my neck and shoulders (part of neck that is where the back meets) and that is where the tick was removed. Strange, or is that normal???

May I ask, are you cured as of today? I sure hope so. You know a lot and your suggestions are very helpful to so many people. Thank you for taking your time to answer my questions.

Have a good night.
Julie

 
Old 08-29-2007, 07:18 PM   #10
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Re: I'm sorry-More questions

Try adding epsom salt and hydrogen peroxide to your baths too to detoxify. I haven't done it yet, but people say they help alot... search this site to see how much of each. Good luck. I'll say some prayers too. Check out the alternative option thread that posted today too.
_rach

 
Old 08-30-2007, 08:40 PM   #11
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Re: I'm sorry-More questions

Hi.Julie.
So Sorry to hesr about your pain .I totally have.been there.Thank God It did get better. With akk the sensitivityto drugs you have I would caution you about taking.Flagyl.One of the side effects of Flagyl can be periferal neurapathy. I believe I have experienced this partly as a reaction to the Flagyl.
I regards to the hot tub treatment or fever therapy as it really is called. it does work in the early stages. My soster in law got bitten , had the bullseye rash.and did "fever therapy"in hot warter, and had no further problems with Lyme. It should be done with supervision by a health professional as you run the risk of overheating the brain. Blessings
Paulette

 
Old 09-01-2007, 11:09 AM   #12
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Re: I'm sorry-More questions

Could you please tell me the name/telephone/contact info for the
doctor in Northwestern Chicago. I have advanced stage Lyme & need help.
Thank you!

 
Old 09-01-2007, 12:01 PM   #13
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Re: I'm sorry-More questions

Hi mary828, welcome to the board!

How long have you been sick? It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. 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. Have you ever been tested for these?

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

I hope you can get treated soon.

 
Old 09-01-2007, 01:29 PM   #14
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Re: I'm sorry-More questions

Quote:
Originally Posted by mary828 View Post
Could you please tell me the name/telephone/contact info for the
doctor in Northwestern Chicago. I have advanced stage Lyme & need help.
Thank you!

Hi Mary:

I'm not sure I can post phone numbers. A friend told me about Dr. Zolden in Chicago. And Dr. Chundi in Gurnee IL, he is not a LD, but knows alot about lyme so I'm told. I will be making an appointment with him. Also Dr. Waisbren in Milwaukee WI. If I can post the phone numbers I will.

Julie
Prayers are with you, I know we all need them big time.

 
Old 09-01-2007, 05:52 PM   #15
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Re: I'm sorry-More questions

Hi Julie. I do not have any experience with Dr. Z., but I was told that he is not knowledgeable. The person who saw him was under-treated.

 
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