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This topic has been moved to Medical Questions.     next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » New to Lyme Disease

Author Topic: New to Lyme Disease
Member # 39856

Icon 1 posted      Profile for campermom     Send New Private Message       Edit/Delete Post 
I am hoping that all of you could give me what info you have and I am also hoping to find support here for what has been a long, long journey. I started getting sick 6 years ago..first my left knee started with so much pain, I could not even believe that there could be that kind of pain. I had Supartz shots in my knee and that did not help at all. It went away after a year of misery where I could hardly walk or even think, it was so painful. Then my heart started missing went crazy. I went to 5 cardiologists and even the Mayo for them all to tell me my heart was healthy and there was no reason for this very distracting problem. Missing about 10 or more beats every minute. Then that got a bit better but never healed... I got Reynaud's syndrome in my hands
and I started feeling horrible all the time. Pain throughout my body. Couldn't even hold a book to read sometimes and then the right knee started to be as painful, even worse than the left one was. Now it is both knees. I tested with the regular test for Lyme and did not have it. Then I went to dr. who wanted me to get $600 tests for Lyme that I could not afford. He told me he was really thinking that I had Lyme so he put me of Flagyl and doxy. and a homeopathic. Within 2 weeks I felt better...less pain in my body and less ripping pain in my knees. I do not feel as good now as I did at first. I have been on the meds for 6 weeks. I am doing coffee enemas 1-2 times a day for detox. My dr. does not say much else or instruct me in what to do. What advice do you all have?
I am also wondering how many people have been diagnosed by symptoms and not a test. I am just looking for help and support. I am a busy mom of 11 kids and have felt terrible for so long. I need to feel better. I am not checking this for spelling mistakes as I have to run and pick up kids from activities. Thank you in advance.

Posts: 53 | From USA | Registered: Jan 2013  |  IP: Logged | Report this post to a Moderator
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Icon 1 posted      Profile for Ellen101     Send New Private Message       Edit/Delete Post 
11 kids, wow, that alone wood be so much to handle!

Feeling better initially on antibiotics and then feeling worse is pretty typical with Lyme. Here is a link to a great web site with a wealth of information that may be helpful for you.

Posts: 1747 | From United States | Registered: Dec 2011  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 36298

Icon 1 posted      Profile for canadianmama     Send New Private Message       Edit/Delete Post 
Hi Campermom, Sorry to hear you are feeling unwell.

It sounds like you are on the right track treating for lyme. Lyme is a clinical diagnosis, blood test are very unreliable. Having the symptoms and then reacting to antibacterial therapy are very strong indicators of a clinical diagnosis.

My thoughts for you would be detox baths, (epsome salts and baking powder), also that you could use bath times to focus on you and focus your positive energy/prayer on your own healing.

Many people here also have had great success treating parasites as one of the most common co-infectors.

I wish you all the best. You sound like a superhuman already and you can get yourself well.

Posts: 372 | From british columbia | Registered: Feb 2012  |  IP: Logged | Report this post to a Moderator
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Icon 1 posted      Profile for ktkdommer     Send New Private Message       Edit/Delete Post 
St. Paul has an ILADS trained doctor if you could afford it. It sounds like you may need a more intensive treatment. Since you showed such improvement with antibiotics, that helps to confirm Lyme.

Most docs will just requestion a $200 western blot test from IgeneX when finances are an issue. There was some grant money at for testing. Not sure if it is still available.

There is a lot of information already on the website but you need the time to read. Several good books are available also.

Take care!

Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
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Icon 1 posted      Profile for sickofsick     Send New Private Message       Edit/Delete Post 
I'm sorry you are feeling so bad. It does sound like you are on the right track treating Lyme. Diagnosis can be based on symptoms, but I can relate to the feeling that positive test results would help you feel more certain.

A good doctor would also evaluate you for coinfections which are common with a tick bite and can make treatment more complicated. I felt it was worth the money to see a really good doctor. We travel to see one. I still think you stand a better chance with a doctor that knows these diseases well. It does take patience and have only experienced moderate improvement so far.

Eleven kids must keep you hopping! I only have four and I'm only the mom of the Lyme patient. I wish you the best. I would hate to be dealing with Lyme as a busy mother.

Posts: 312 | From Utah | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
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Icon 1 posted      Profile for hopingandpraying     Send New Private Message       Edit/Delete Post 
So sorry you are going through this. You need to be evaluated and treated by a Lyme-literate doctor (LLMD) a.s.a.p.!

Contact the Minnesota Lyme Support Group at:

Maybe they can help you.

Here are some more resources for you:

Once you get some names of LLMDs, write a new post in "Seeking a Doctor" to ask for personal references. This way you will find the right doctor to give you the correct treatment.

BTW - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.

Posts: 8814 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
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Welcome!!! [Smile]

Good advice above.

I'll move this to Medical Questions where you will get more help.

Opinions, not medical advice!

Posts: 95208 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator

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