posted
Hello all: I started feeling numbness and weakness in my arms and legs. Joint pain. Disbalance. Eye floaters. Neck pain, jaw popping. Feeling confused and disoriented. Extreme anxiety. A chiropractor suggested Lyme. I did Western Blot which came back negative but one band IGM 23 was reactive. Doctors are saying I do not have lyme. We do not have LLMD where I live. Closest place would be Florida. So I am not feeling well. Symptoms are really scary especially numbness and confusion / disorientation. And to make it worse, I feel no one understands and is playing down what I feel by telling me oh I get joint pains all the time or it is all anxiety. I am really overwhelmed with all the information, don't know what to do and feel very scared. I try to be strong and positive, but I still end up crying every day. I read somewhere that there is a very small number of people with lyme. Yet I see so many people on the different boards which makes me think it's a lot more than what the CDC says. Yet no one seems to know much about when I ask to include doctors.
Posts: 138 | From US Virgin Islands | Registered: May 2012
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posted
So sorry you are going through this. Yes, it is frightening when you don't know what is going on and especially what is wrong.
Are you able to travel (you will probably have to do this) ? You might want to click on "Support Groups" in the upper-left-hand corner of the Lymenet page, then "FL". Contact information will come up. Maybe they can help you.
Have your family and friends view "Under Our Skin", a documentary about Lyme patients and this horrible illness. You can view it for free on Hulu: http://www.hulu.com/watch/268761/under-our-skin
Have then also read the book, "Cure Unknown" by Pamela Weintraub. She and her whole family contracted Lyme while living in NY. This book not only provides a firsthand perspective on Lyme disease and co-infections, but also provides a detailed picture about the politics surrounding this insidious disease.
There are many more people with Lyme as this illness is grossly under-reported by the CDC. It mimics other illnesses, i.e. rheumatoid arthritis, ALS. Parkinson's, etc.
Sadly, most non Lyme-literate doctors don't know about this horrible disease or its complex treatment and they don't take it seriously. Most patients don't receive the proper treatment, then end up getting sicker.
You are wise to research for yourself (especially on Lymenet - very informative) and don't listen to the mumbo-jumbo you're being told. Doctors will always give some sort of psychiatric diagnosis when they don't know what it is!!
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: 8981 | From Illinois | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I can't read the post but just the headline. Hope this helps:
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Hi Prayerworks - I could have written your post last summer. It is very, very hard to be so ill when everyone dismisses your symptoms, and unfortunately most of us have had the same experience.
It is good that you found Lymenet. Good for you for being an advocate for your own health. Unfortunately with Lyme, that is what is needed to find the right treatment. So give yourself a big pat on the back that you have already started down the road to getting well.
You probably do have Lyme. As I recall, Band 23 is specific for Lyme and you have a lot of clinical symptoms as well. There is a lot of controversy regarding the Western Blot, and many people think that the CDC's criteria for a certain number of bands is arbitrary. Also, you have a lot of symptoms of Lyme and even the CDC allows that Lyme is a clinical diagnosis. Based on your symptoms, you may have babesiosis and bartonella as well, and that is very common for those with Lyme, but it does make you sicker.
Have you posted on the Searching link here to look for an LLMD? If there isn't one near you, can you travel? Also, in the meantime, will your chiropractor prescribe antibiotics or know of someone who will? I had luck early on with an "integrative medicine" primary care doctor. She is not an LLMD but she is Lyme-friendly and she prescribed antibiotics to get me started while I waited to get in to see an LLMD. Maybe there is someone like that near you.
It is so hard to figure this all out while being so ill, and I for one had never stepped out of the mainstream of medical treatment before. But unfortunately that is what I had to do to get proper treatment for Lyme, and it didn't take me all that long to get there. I was so, so sick and there really wasn't another option.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Yes, I have posted in search of an LLMD in Florida, preferably in Orlanda area. Waiting for to see.
Posts: 138 | From US Virgin Islands | Registered: May 2012
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posted
Lyme can cause anxiety. It is a biologically-caused anxiety. That means most therapies won't work.
If you treat the lyme, your anxiety will decrease and you will see anxiety-type symptoms disappear without addressing them.
Many lyme patients experience anxiety. It is not your mind causing the symptoms. They are caused by the disease.
If I had a dime for every person who told me to "stop stressing out," I'd be rich! You can learn to tell yourself when you escalate that it is the lyme, you may be able to reduce some symptoms.
Posts: 93 | From arizona | Registered: Oct 2010
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posted
The numbness can be your heart. I would go to emergencey room andlet them run you through stress tests.
Also you will find out quick if its panic attacks or stress
I would take a baby asprin till then strokes are bad
Posts: 19 | From MD | Registered: May 2012
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
The numbness and weakness are neurological symptoms, which are common for Lyme. Of course they are not good! I urge you to find a good LLMD and travel to see him/her. I know you are looking into that.
It's hard when you have to travel so far, but many have to do that. ANd you can come here and to the FL support group for support.
Under Our Skin is great to show family members (someone mentioned it above).
Posts: 3771 | From around | Registered: Mar 2008
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