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Posted 8/6/2011 10:01 AM (GMT 0)

I have been sick since December 2010, starting with an overall body soreness and stiff neck with chest congestion.  This changed into muscle sorness which moved around from back to hips to knees which are now swollen and stiff all the time.  My lyme test - ELISSA - came back negative, but my doctor put me on 200 mg of doxy for two weeks.  the first week the pain changed and that tingling came back that I had in December and January.  My knees got a little better.  The second week I was stiffer than usual in the morning and generally sore, but the pain changed - seemed reachable, like I could rub it better.  This week I do not see any improvement and I am getting the feeling that the doxy gave me a week of anti-inflamatory relief and that I do not have a solution yet.  Has anyone out there had a similar reaction to doxy or am I barking up the wrong tree - maybe I do not have lyme after all.  Could not get in to see a rheumatologist until the end of October.  Is that going to help?

By the way - my husband came down with the same symptoms a week later and we are now both suffering in the same way.

Posted 8/6/2011 12:58 PM (GMT 0)
Abbygirl2, welcome to the forum. Have you read "New to Lyme - Start Here." It gives so many tips and information on lyme.

Do you remember a bite or rash or were you and your husband gardening or hiking or at an outdoor event together. It certainly sounds like lyme to me IMO. However, you must understand the controversy surrounding lyme. Have you done any research? The lyme testing is incredibly inaccurate. Weird right? I went undiagnosed for years because a dr. told me the test was negative when in fact specific "bands" showed up which indicated lyme. Your symptoms are classic lyme. The reaction of the antibiotics would be what's called a herx. When you kill off the bacteria, either on your own or with antibiotics, it lets off a toxin which results in worsening of symptoms.

I would not recommend a rheumatologist of infectious disease dr. They do not believe in proper protocol for treating lyme. Again the controversy in the medical field about this disease is unbelieveable. You need to see an LLMD, lyme literate medical doctor. Where are you located? Someone on the forum may be able to guide you to one. I wasted a year going to a very nice infectious disease dr. who just didn't know the disease. He kept testing me for syphillus. Also, you should be tested for coinfections which are really common and treat differently than lyme.

Please use this forum for all your questions. There are so many helpful and wonderful people on here. It has truly been a lifesaver for me. Hope you feel better soon.
Posted 8/6/2011 2:35 PM (GMT 0)
Hi Abbygirl2,
Welcome to our forum! I am so sorry that you have a need to be here, but I am glad you found us!! I'm sure you will find us to be a caring, understanding and helpful group!! Springsjean gave you some great information, but I just wanted to say Hi and add a bit more info!

If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information and informative links that have been put together by our members here! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts.

According to what I have learned (although I"m not medically trained), you were only on a strong enough dose of Doxy to suppress, but not kill off any of the Lyme bacteria. I would highly recommend that you read through Dr. Joseph Burrascano's "Advanced Topics in Lyme Disease" as it covers not only Lyme, but the other tick-borne infections that commonly travel with Lyme, their symptoms, and his recommended treatments. You can find it in the "New to Lyme?" thread, although here is a link as well: betterhealthguy.com/joomla/images/stories/PDF/lymdxrx2008-october.pdf

I too would recommend that you and your hubby get in to see a LLMD (Lyme Literate Medical Doctor), as they are the only ones who truly specialize in this. It's like the difference between seeing your GP for an eye infection or going to an Opthamologist.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:[email protected]

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Once again, Welcome!! smilewinkgrin and as Springsjean said - don't hesitate to ask all of your questions here! We don't know it all, but we can sure help you find answers! You are not alone in this.
Posted 8/6/2011 2:49 PM (GMT 0)
I had a couple of bites on my foot in November. I thought it was an unusual time to get a mosquito bite - never thought of a tick. Don't remember a rash and haven't had any recurrent rash. The actual sickness came a week later and my husband 2 weeks later. We had been exposed to both mice and bats in a bed and breakfast we had been staying at overnight - was not impressed.

Have purchased a couple of books - and have scoured the internet but always hear the same things. Hope by talking to others who have similar symptoms, I can diagnose myself. Am very discouraged by the medical profession who want me to believe I have poli myalgia rheumati. Prednisone was great, but not a solution since once off that the symptoms returned.

No neurological symptoms - but I can't remember!! (HA! HA!)

Thanks for your welcome and your support.
Posted 8/6/2011 6:29 PM (GMT 0)
Abbygirl2 says:

"Prednisone was great, but not a solution since once off that the symptoms returned. "

Predinosone is a steroid!  If you have lyme, steroids are a definite NO-NO

 

Posted 8/6/2011 6:47 PM (GMT 0)
Well, Abbygirl, I hate to be the one to tell you , but the prednisone was a bad move for someone with TBI's (tick-borne infections) as that suppresses the immune system and allows the bacteria to spread unchecked.

Are you interested in going with abx to treat your infections or are you wanting to go a more natural route? If you are interested in doing at home treatments, here is a link to the most commonly used 'natural' treatments: www.lymediseaseresource.com/Protocols.html There are also places like the Hansa Center in Kansas that offers an at-home protocol. Some of us here have been using Homeopathic Docs or Acupuncture Docs that also use Chinese Medicine to find our healing, so it's really up to you as to which route you wish to use.

As far as the bites go, mosquitoes, fleas, biting flies and any other biting insects all have the potential for spreading Lyme and other TBI's.The other thing is that a tick can be the size of the period at the end of this sentence.

The rash is only experienced by 40-60% of those infected, and not everyone that has a rash has the typical bulls eye rash. I didn't see any rash until I had been on abx for a couple of months.
Posted 8/6/2011 8:41 PM (GMT 0)
I live in Canada and have no idea if there is a LLMD anywhere in Ontario. I could get to Michigan or New York State. I would go anywhere. Any suggestions?

Obviously, Lyme is not even being considered by doctors who prescribe prednisone so readily. I have been really disappointed in doctors since this whole thing started. I think they think I'm nuts and wasting their valuable time.
Posted 8/6/2011 9:56 PM (GMT 0)
HI Abby girl,
Many of those infected and living in Canada will end up traveling to the US for treatment or treating at home. I would suggest that you register with CanLyme (www.canlyme.com/) first though, to see if they can match you up with a LLMD.

Here is a post that I copied and saved from other Canadians talking about registering on CanLyme;
I had a similar problem when I was registering with CanLyme. There is something we need to do that is "hidden" in one of the posts about registering. This is the part that I did not do, and only found out about it more than a month later. Hopefully this is all you need to get going on the CanLyme site:

When you register it will send an automatic notification for us to activate your account.

Due to computer generated spam registrations your new registration may get lost in the midst.

Please send a separate email to [email protected]
with the words 'forum activation request' in the subject line and in the body of the email tell me the username you registered with so we can manually activate your account.

This is a hopeful link that was just posted tonight on CanLyme that I think you folks might be interested in reading:

www.vancouversun.com/Most+doctors+trained+diagnose+Lyme+disease/4518329/story.html


If you would send me an email, I have a name of a doctor in Calgary. She is a TCMD who has had Lyme and understands it from personal experience. She uses the Cowden protocol and TCM. I got the info about her from another member.
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