My husband was bit by a tick 5 weeks ago today. The tick was huge when he pulled it off and had been there at least 2 days.
A week later he passed out and has had symptoms similar to lyme disease ever since (fatigue, foggy head, unable to concentrate, dull headache, tingling of hands/legs when lying, etc.).
We went and saw a general doctor approx. 10 days after the tick bite and he tested him for lyme disease, which came back negative.
We've been to countless doctors since (GI doctor, Cardiologist, ER doc, and back to general doctor).
After doing some research last night we realized that if taken too early, the tests for lyme disease will come back negative.
Today we had antibiotics called in (doxycycline at 100mg twice a day).
We really don't know what are next step should be. Up until this tick bite he has been extremely healthy and hasn't had any need to see a doctor for years up until now. It has been 5 weeks now with these symptoms and we want to make sure we treat him effectively.
We don't even know if it is lyme disease, but every sign points to it is.
We would love any guidance you have for us. I am worried sick for him and especially for any long term effects this could have on him. We've got 2 little boys who need their daddy active and healthy again.
Thank you so much in advance.
................................................. (breaking up the text for easier reading for many here)
[ 11-02-2015, 01:01 AM: Message edited by: Robin123 ]
Posted by Lymetoo (Member # 743) on :
Makes you wonder what they are teaching them in medical school these days. You are correct, the tests will not be valid when taken within 6 wks of the bite.
So the best plan is to TREAT THE BITE. Your husband is being given 1/2 the dosage I would want if I had a new bite, but the dosage is typical of what an ordinary doctor would prescribe.
You need to find him an LLMD right away. Sadly, there are none I would trust in Alabama. I will send you info on what I have for your "area."
You will also want to post in Seeking a Doctor to see if you can get more help finding an LLMD.
By the way, even if tested now, the results could still come back falsely negative unless you get a lab test from an expert lab like Igenex Lab.
I suggest you get to a good lyme specialist as soon as possible. We often call them "lyme literate MDs" or LLMD.
Such a specialist treats only lyme disease patients so they develop a lot of expertise in the disease.
It certainly sounds exactly like lyme disease to me. Unfortunately, you are going to have to travel a good distance to get to a lyme specialist. You are in a very bad area for lyme doctors. There aren't any!
Nothing has changed since then. There is a lyme specialist in Louisiana. There is also a good one near Washington, D.C. He will do telephone appointments after the first in-person appointment, so you would not have to travel there every month. (Lyme doctors see their patients monthly.)
If you get to someone good now, you can nip this thing in the bud. That is what I would do.
To get an education on lyme disease, read the Burrascano Lyme Treatment Guidelines found here:
You have described the classic lyme disease symptoms to a T, so, based on the history of an engorged tick and the current symptoms, you must get him to a lyme specialist. As you are already seeing, this disease is horrendous!
I got rid of it over 10 years ago, but I still hang around LymeNet to point folks to the good doctors. The doc is the key to getting rid of this disease. Can't emphasize that enough. The doc is the key.
So, I tell everybody to get to the very best lyme doctor they can afford. Otherwise, you can lose your brain, your job, your health insurance, credit cards, house, etc. etc.
Let me know if you want the name of the doc I recommend near D.C.
You can contact lyme support groups in your state to find out where folks go for good treatment. Click on Support Groups on the left side of this page near the top. Do a lot of research into a lyme doctor before putting out the big bucks. I was referred to a lousy doctor by a support group years ago, but I was referred to a great doctor (who got me well) when I called another support group and said that I wanted a doc who followed the Burrascano Guidelines.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has(including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
Look at page 18 of the Guidelines and you will see Burrascano's recommended dosage of doxycycline--200 mg twice per day.
You can see the dosages for other lyme antibiotics also.
Be sure to take the doxy in the middle of a full meal. Eat half the meal, take the doxy, and eat the other half of the meal. Do NOT listen to any doc that tells you to take this med on an empty stomach.
All lyme doctors say to take in the middle of a full meal. Otherwise, your stomach will not tolerate it and you will be forced to stop treatment due to vomiting, reflux, etc. So, do what the lyme docs say to do. AND, don't lie down for at least 30 minutes after taking the doxy. You don't want it to come up into your throat and burn it.
Its a shame that there are so few lyme specialists. This disease has to be taken very seriously. I hope you are able to travel for good care.
Posted by Lymetoo (Member # 743) on :
Thank you, TF!!! AWESOME information!
Posted by dal123 (Member # 6313) on :
This happened to me, 100 mg of doxy 2x day, total 200 mg doxy / 24 hrs, only kills less than half and sets you up for chronic Lyme, you must have HIGH dose combination antibiotics to begin with. My dog who weighs 1/2 of what I do got 400 mg doxy - guess who got well much faster and it pays to be a dog not a human in Texas. And the Texas LLMD who gave me this very low doxy dosage knew better himself but put his medical license before properly treating me.
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent with some suggestions. I don't know of any Lyme-literate doctors in AL.
Your husband needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
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.
Posted by Lymetoo (Member # 743) on :
Where's rj007 ??
Posted by poppy (Member # 5355) on :
Sent a pm, are you there?
Posted by KH111 (Member # 25829) on :
Go to a walk in clinic, like a Ready Clinic and ask for doxycycline on top of what you already have. Get additional abx any way you can until you see a true LLMD. Because he has such severe symptoms, he most likely has a co-infection of either babesia or bartonella. He needs to be tested for these in addition to lyme because the treatment is different. Most people who are sick have more than just lyme. It is treatable, you just have to get to a good llmd and treat properly for a long time. Keep reading and good luck, this is a good place to find valuable information.