Help please

Hi Catgamom,

Welcome to the forum! It sounds like you have really done your homework. For even more information and some helpful resources, have a look at our "New to Lyme?" thread at the top of the forum.

It really does sound more like Lyme disease rather than RA. However, I'm not a doctor and no one can diagnose a patient unseen over the internet!!!

Just so you know, prednisone is really not a good thing to take if a person has Lyme. It lowers the immune system and allows the disease to progress much more quickly.

So you had best get to a Lyme Literate doctor, to get a clear diagnosis by symptoms and good and thorough treatment. 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]
If you'd like more doctor suggestions, 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 a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Also, if you start a new thread and title it "Looking for LLMD in GA" you will get some help from our members.

Good luck and keep us posted!

Hi catgamom - I'm sorry to hear about your husband. I know it's so frustrating trying to find answers when all you want is for him to feel better. Luckily, while being misdiagnosed for a while is by no means an ideal situation, people can and do get better after 10+ years of being undiagnosed/misdiagnosed, so while getting treatment (if it's lyme) as soon as possible is crucial, hopefully that'll ease your worry just a little bit.

In the meantime, I'd recommend taking a look at the "new to lyme" thread - there's a lot of great information there to help you navigate the waters of lyme disease diagnosis and treatment, including information on detoxing which is very helpful.

Best of luck!

I have had similar symptoms and a negative test....went to an LLMD tested positive and have finally started treatment. My 8 year old was just diagnosed and he had 2 negative tests and a 2-week inpatient psychiatric hospital stay. Not fun for anyone! I took him to my LLMD and had him tested and sure enough he tested positive for Lyme. A very close friend of mine lives in GA and she flies up to Maryland to see her LLMD, which both me and my son go to as well. I agree with a previous post on the steroid issue...steroids are not good if your husband does have Lyme. I hope you are able to locate a LLMD in your area and get a clinical diagnosis...you can't go on labs alone with this. Blessings to you and your family.

Got to talk today with a woman in my area whose husband and daughter both have Lyme. The husband has been going through this for 10 years now. They go to Dr J who is now in Washington DC. She gave me some good advice and told me who the local infectious disease doctor is. She says we might can get a clinical diagnosis from him. So tomorrow I'm calling hubby's rheumatologist to see if they will fax me a copy of his Lyme test so we can see if there are any positive bands. I didn't know enough at the time to ask about that.

Today at lunch hubby's hands started with tremors, but then moved into a cramp, much like I saw in the documentary I watched yesterday, Under the Skin. Scared me when I saw his hands do that.

Post Edited By Moderator (borderlyme) : 4/15/2012 7:54:19 PM (GMT-6)

Hi catgamom, so glad that you've gotten some good information. Sounds like you are doing some very thorough research. Your husband is very fortunate.

Re: the Western Blot test- the commercial test doesn't check one of the bands that is the most sensitive to the USA borreliosis. This was because several years ago, there was work on a vaccine; the CDC recommended not using the particular band for diagnostics, since someone could test positive for the borreliosis if they'd been vaccinated. However, there is no vaccine for humans at this time. When I took the Western Blot, my LLMD wrote an order to include whichever band that was. I am not a M.D., so I don't know exactly the right terminology for all of this. I just did some reading in order to prepare for a discussion group and this is one bit of info that I have stuck in my brain.

And like achieving grace said, prednisone could be bad for someone with Lyme. Your husband shouldn't stop taking it w/o discussing it with the dr., of course, but it should be discussed.

Another thought: maybe your infectious disease specialist is more forward-thinking than most, but in my reading, it seems that the infectious disease docs refuse to believe that chronic Lyme disease exists, based in part on the poor sensitivity and reliability of any of the diagnostic tests, with a high percentage of false-negative results. I don't know whether your husband's situation would be considered "chronic". Maybe this woman who you talked with had a good encounter with the infectious disease doctor and it will be the same for you and your husband. Hopefully, that will be the case! From what I've read, the infectious disease specialists believe that Lyme disease can be contracted by a tick bite, and that it's an illness that lasts a short while, then it's over. The chronic, disseminated Lyme disease (that's hard to get a positive test for, since the bacteria leave the bloodstream) is what they believe is not a real disease.

I don't mean to sound all "doom and gloom", but I remember what it was like trying to get a diagnosis, and having doctors basically tell me that they can't help me (!), I don't have Lyme disease, they don't know what I have but they DO know that it isn't Lyme disease, and that "we don't have Lyme disease here". Ha! Lyme bacteria is on every continent. There are ticks, on albatrosses, in Antarctica, that have had the borrelia bacterium cultured from them. And yet, we don't have Lyme disease in Alabama?? (Why do the vets in Alabama vaccinate dogs for Lyme if "we don't have that here?")

It sounds like you've done quite a bit of homework and investigation about this, more than I ever thought to do. Good luck to you and to your husband. Keep posting to let everyone know how things are going.

(There is a LLMD in Asheville, NC, the name of his practice has "Integrative Medicine" in it. I was not able to locate a LLMD in AL or GA when I was looking, but maybe there is now. I'd be interested in finding out if you do find one.) Good luck!!!

Sorry about using the doctor's name!

What was told me about the infectious disease doctor in this area, was that he might at least give us a diagnosis, but not to expect real treatment. We would need to go elsewhere for that.

At least Asheville is closer than Washington DC. We'll look into that. My real fear is that we won't be able to afford the treatment. It sounds really expensive and seems most insurance companies don't want to pay for anything but the most basic treatment. I'm praying that that is all he needs, but worry that it will be much more.

We feel caught between a rock and hard place with the prednisone. Without it, he can't hardly move, so wouldn't be able to work, but know that he really shouldn't be taking it at the same time. I will get epsom salts and a magnesium supplement both. The lady I talked with yesterday suggested that also.

Last night hubby mentioned that he's been having difficulty getting words out correctly and that his short term memory is horrible. I had thought I noticed those things a bit, but didn't want to acknowledge them. Sigh... He didn't know that those are Lyme symptoms as well. He's a major worrier, so I to keep things to "need to know". ;)

I am looking into a dr in MS as I heard he takes insurance...maybe we could go together and share expenses! :)