LymeNet Flash: Newcomer Looking for input

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Posted by KLS (Member # 6002) on :

Hi Everyone!
Just wanted to thank you all for the information you've shared on this site. I've been sick since Jan. with unexplainable bouts of fatigue, irritability discomfort and my general doc. is ready to put me on anti depressants and says I couldn't be positive for lyme because my
Western Blot test did not come back +. I've had my gallbladder removed, been to numerous doctors, had all kinds of bloodwork because of course my mind has been thinking the worst and everything comes up negative and I just keep hearing that I'm healthy, but I feel terrible. I do live in an area with a high lyme rate and had a raised, blistering rash about 3 years ago and was treated for 3 weeks with antibiotics because I was pregnant but they never tested me for lyme. Since this past Jan. I've had so many health problems and been so unhappy that I finally went to a Lyme Doc., tested + for mycoplasma and borderline for lyme. I'm now having so much discomfort in my jaw and a constant cough and my Lyme doc finally started me on Trimaxx and Biaxin for 3 weeks and will retest me for lyme at that time. I've been on abx for about 8 days and don't feel much improvement and of course I'm worried. I wanted to get your advice and see if anyone has had any problem with jaw pain and if I'm expecting too much too quickly. I still feel like I'm in a fog and I have such difficulty keeping up with my two young children that I worry about being able to take care of them because I feel like sometimes I can barely keep myself together. If anyone has any feedback, I would greatly appreciate it!
Thank you for all your help!

Posted by KLS (Member # 6002) on :

Thank you so much for your encouragement and I'm so glad to have found a place where I can get some answers (finally!!!)
Thank you! Thank you! Thank you!

Posted by cbb (Member # 788) on :

Hi KLS,
Welcome to LymeNet. So sorry you're having such a tough time.
Caring for 2 little ones is difficult enough when you're feeling fine. Hope you'll start improving soon.

I agree with cave76, you may have had Lyme for some time.
IF you had Lyme disease 3 yrs ago, 3 weeks of antibiotics (abx) was not enough, even if it was a strong enough dose.

Go to www.ilads.org/guidelines_summary.htm
Print a copy - great info.
# 5-8: Testing
#10 says "There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme......"

There's also a possibility you have co-infections like Babesiosis, Ehrlichiosis, Bartonella. They frequently occur along with LD.

Has your Lyme dr checked you for co-infections? ...especially Babesia?
A cough was one of the symptoms that cleared up when I was treated for Babesiosis.

Go to www.ilads.org/burrascano_1102.htm
Print "Diag Hints & Treat Guidelines..." -
32 pages of excllent info from one of the best LLMDs.
pages 4-5 & 20-24: Co-Infections
pages 16-18: Antibiotics - recommended dose & length of treatment.

Since all the symptoms you're having could be from 1 or more Tick-Borne Diseases (TBDs), you need to be sure you're seeing a Lyme Literate Med Dr (LLMD).

There are very few LLMDs around. Unfortunately, all drs who treat Lyme are not really LLMDs.

Go to Seeking a Dr here on LymeNet. Ask for info on LLMDs & put your location in the title. Info will be e-mailed to you.

IF your dr is recommended, then that's great. If your dr is NOT recommended, then you should consider seeing someone that is.

Also, on the left, click Support Groups & contact those in your state & surrounding states. Ask the contact person about LLMDs & if they know anything about your dr.

You need to be evaluated by a LLMD - ASAP.
The sooner you get a diagnosis & start treatment (if it is TBDs), the better the results.

Check out "Links for new LymeNet members" http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Keep in touch & ask as many questions as you need to.

Posted by tabbytamer (Member # 3159) on :

KLS,

Welcome

Lots of good adivce above.

How old are your children? Has the child that you were pregnant with 3 years ago been tested for Lyme? It would be wise to have the child checked, especially if the child has had any developmental delays or behavior/mood problems.

Children with Lyme recover very nicely when properly treated.

That link cbb gave you for burrascano's treatment guidelines has a lot of beneficial info. It is a lot of reading but well worth it.

Also, there is an article at this link that explains why Lyme lab tests are not always accurate:

Understanding Lyme Test Results

All the info here can be overwhelming at first. So please feel free to ask questions, okay?

Tabby

Posted by Green Darkness (Member # 985) on :

K,
You've found the best place ; we are here to help.
I've had lyme now for going on 4 yrs. I also had my gall bladder out(not a fun time); was misdiagnosed for yrs. With all the third stage lyme symptoms,(reversal dyslexia, photophobia(glare bothers eyes); jt pain, jaw pain, heart palp.etc. it is hard on a person;
I have no children. My dog also contacted the lyme(thanks to him I finally figured out when he had it-that my neg. test was wrong. Went to llmd(the best in PA) and finally the 4,000 mg of three different antibiotics are helping ; still have a long road ahead.
Hope it helps to hear from others. Keep the faith. We all must live one day at a time,esp with lyme.
Green

Posted by KLS (Member # 6002) on :

Thank you everyone so much for all the support and encouragement that you've given me...I truly appreciate it! My 3 year old has not been tested, but I will definitely check into it-my 6 year old had lyme two summers ago and she has so may sensory issues that I worry sometimes that she may still have it. Have any of you been so consumed by all these health issues that you worry that you have some kind of terminal illness? I am so worried constantly and I feel like it's consuming my life. My husband has decided to go to my general doc with me this week just to hear for himself and to assure me that it's not cancer. I've been on antibiotics for 8 days now and feel the same if not worse and I'm so afraid. I hope I haven't rambled, but I'm hoping that someone else may have felt the same concerns...
Thanks to everyone again!

[This message has been edited by KLS (edited 31 July 2004).]

Posted by TheCrimeOfLyme (Member # 4019) on :

Did your LLMD tell you of the Jarish Herxheimer reaction? Where you feel worse before getting better?

ANd yes, you will have plenty of these. Its very possible you are having a herxheimer reaction and the spirochetes are dying, which is why you are feeling worse.

Its the name of the disease with many, many of us here. I herx every month. Its not fun, but after fifteen months of antibiotics, I am MUCH much better.

If your daughter had lyme two summers ago and is still showing symptoms, I would bet my left brain she still has lyme. I could be wrong, but you can still have my left side of my brain

You're not going to feel better right away. You *could*. Positiveness does alot, and its impossible to beat this without thinking the best for yourself and your kids.

If you had cancer, your blood work would have shown it by now.

You CAN beat this. Just don't let it beat you first.

Posted by KLS (Member # 6002) on :

Thanks for the encouragement-I really need it right now! My husband keeps reminding me of "the power of positive thinking" and I'm really going to work tryinig to stay positive and not stress out!
Thanks again!

Posted by rosesisland2000 (Member # 2001) on :

quote:
Originally posted by KLS:
[B]Thank you everyone so much for all the support and encouragement that you've given me...I truly appreciate it! My 3 year old has not been tested, but I will definitely check into it-my 6 year old had lyme two summers ago and she has so may sensory issues that I worry sometimes that she may still have it. Have any of you been so consumed by all these health issues that you worry that you have some kind of terminal illness? I am so worried constantly and I feel like it's consuming my life. My husband has decided to go to my general doc with me this week just to hear for himself and to assure me that it's not cancer. I've been on antibiotics for 8 days now and feel the same if not worse and I'm so afraid. I hope I haven't rambled, but I'm hoping that someone else may have felt the same concerns...
Thanks to everyone again! [B]

Yes, everyone one here and there are thousands has probably felt that way and all the other ways you can think at some time or the other.

Be sure to read the Links for New LymeNet Members someone has provided for you above. Study it. You'll began to see that you are not alone and not unique. For this disease is very, very, very complicated adn the more you know, the better you'll be off when seeking teatment.

Of course we are certainly here for you, but, if you try and get a grasp, early on by learning as much as you can, then you won't have to wait for an answer to your post, or not get enough to make a decision one way or the other...see what I mean.

And, start reading through the posts, even if you don't understand at first, for you'll see yourself over and over in just reading and responding to posts.

Sorry you had to be here, but, this is the best place for Lyme information and support all together in one place on the entire web.

Good luck, and, please when posting long test without paragraphs, try and put a few in there every now and again. You can do this by hitting the Enter key, TWICE, every now and again.

It makes the text easier to read for those of us with Lyme eye problems. Thanks,

Good luck,

Rosemary

The feeling worse after starting antibiotics (abx) is called a Herheimer reaction and sometimes here referred to as a Herx. That is normal as the spirochetes are spewing poisons out as not to be controled and killed. It is these toxins that will make a Herx reaction.

You want that, so you know it is working. There is a ton each every day about Herxes on here. And, it is explained in the Links for New LymeNet members.

Posted by cbb (Member # 788) on :

The most important part of your treatment is the doctor treating you.
I want you to be assured you're seeing a real LLMD, not just a dr who treats Lyme.

Are you seeing the same dr you saw 3 yrs ago - who gave you abx for 3 weeks to treat Lyme?
Do you have any recollection of what you took at that time & the dose per day?
That would be VERY important info in making a diagnosis now.

If you were undertreated at that time, it would explain your Lyme symptoms now.
This has happened to lots of people here. They were under-treated & the disease flared up later.

Also, it may help people make suggestions if you give the dose of Biaxin & Trimaxx you're taking per day.
Frequently, drs give the right abx, but only half the dose needed.

Dr B's Guidelines recommend:
Biaxin - Adults: 500 to 1000 mg q12h.
Add hydroxychloroquine, 200-400 mg/d or
amantadine 100-200 mg/d

I don't know anything about Trimaxx.
Could it be the brand name for hydroxychloroquine or amantadine?

We want you to be aware that to have good results with treatment, it has to be the right dose of the right abx, so the key is definitely to know you're seeing the right doctor.

If you know that the dr treating you is really, truly, an LLMD, then it should give you peace of mind that you're on the right track.

Posted by WildCondor on :

Hi there...if you need any help just let me know.

------------------
Lyme Disease Help
http://www.wildcondor.com

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