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Lyme Disease
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Posted 6/8/2014 9:02 PM (GMT 0)
My husband was just diagnosed with Lyme by primary care physician. He is scheduled to go to infectious disease specialist in 2 weeks. In the meantime, he is on Doxy-Cycl HyCL 100 mgs twice a day. We are both pretty sure he has had Lyme for some time now. His hip joints are so bad now he limps and he has the traveling pain all over his body. There are times when he just can't even get off of the couch. Also, he has severe deep muscle pain that will hit him out of nowhere. He said to me a couple of days ago, it felt like someone had hit him with a wrecking ball in his butt cheeks. He seems to be losing muscle mass as well. We ourselves, with the help of google, are the ones who figured out he could possibly have LD. First specialist he went to, told him, with his blood work in hand, no way you have it, LD is not in this area. Really?? So we went another route. PCP did the WB blood test and on the IgG interp only the 41 is present, but on the IgM, everything was present and positive. I have learned LD is a very very complicated disease and not many physicians in this area are familiar with it. I've read thru some of the post here and my concern is great, but my knowledge is very little. Can someone please tell me what the next step should be for us and maybe what to HOPE we can expect from the infectious disease Dr when we go? Thank you.
Posted 6/8/2014 9:13 PM (GMT 0)
I'm sorry to hear about your husband.

He is very "lucky" he tested positive though. Many people here (including me) never tested positive on the CDC western blot and go along time without a diagnoses.

You need to find a Lyme Literate Doctor (LLMD or LLND) in order to get appropriate treatment.

Go to the new to Lyme thread and read about detoxing. Detoxing is very important for getting well! Also, make sure he's taking a really good probiotic.

I've gone to a very clean eating diet. No gluten - its horrible for people with Lyme. Low carb, low sugar, mostly fresh fruits and veggies. I juice a lot and incorporate apple cider vinegar & garlic into my daily diet. Green tea, detox tea, and many vitamins and supplements.

Post a new thread that says, "seeking an LLMD in .... " and make sure your email is accessible so someone here can tell you the contact info for a good Lyme doctor near you.

Take care
Posted 6/8/2014 9:23 PM (GMT 0)
I also want to add -

200 mgs of doxy for a few weeks will not kill this.

I've been on 600 mg of Zithromax twice a day for 8 weeks, and I've got a long way to go.

He will get better but you definitely have to find a Lyme doctor
Posted 6/8/2014 10:17 PM (GMT 0)
Thank you so much for your response. It's all very scary to me. And now with thinking it could be sexually transmitted. I don't think there are any LLMD in our area. Pee Dee are of SC. The reason I say this is because of three out of the four dr's we have gone to already say "Its NOT LD, that is not in this area". Really?? I never knew until we were faced with this horrible disease how bad it really is. My husband's quality of life has diminished so much in the past six months and it's very hard to watch him in constant pain 24/7 and not know what to do to help. I have to educate myself. There are so many things on the thread I don't understand, such as detox. I'm trying to get as informed as I can because I know this will be something we are going to have to deal with for a very long time.
Posted 6/8/2014 11:36 PM (GMT 0)
I understand your concerns. Lyme isn't known to be widespread here in Florida either, but after 15 doctors, I finally found one 20 miles from me, through this site.

Post a new topic stating "looking for an LLMD in ... SC area" and just see. Make your email available if it isn't already.

I know its very scary. I have a little boy and was still breastfeeding him when I began having neurological symptoms... I worry about him all the time and plan to have him tested soon.

You must find and LLMD, LLND, or a holistic medicine doctor who is knowledgable about Lyme and will treat.

Detoxing is the removal of toxic substances. Have him drink lots of lemon water, drink green tea or detox tea, dry brush, take baths with Epsom salt, peroxide and ginger, do foot baths, sweat - work out (if possible), sit in a sauna, avoid: gluten, processed foods, carbs, sugars, and alcohol as much as possible.

I hope this helps
Posted 6/9/2014 12:53 AM (GMT 0)
Dont be surprised if the ID doc isnt helpful. You really need to find a LLMD or LLND who can start treatment for your husband. You will learn lots by reading the posts on this forum. It is a very supportive community.
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