Since last july when I woke up one day dizzy with balance issues my life has not been the same. I have so many symptoms that people think I'm a hypochondriac. If someone could relate to my symptoms and at least relate to me I would probably be less upset., I can't tell you how many times I'v e thought about going to the emergency room. I was not diagnosed with lyme until Jan 6 2009, almost 6 months after my first symptom. I had a low grade fever in Sept for 17 days 5 of which I spent in a hospital. I went on doxycyclene for 30 days, twice a day that ended on feb 6. I have no improvement and to be honest I feel worse. Recently I started getting headaches and sometimes I wake up with buzzing in my ears at night. My right foot is partially numb most of the day and I've been getting cold feelings on my head and legs sporadically throughout the day. I have a pain in my ribs on the right side that come and go along with a nauseous feeling. My left hand goes partially numb from time to time as well as my right. Sometimes my left arm is killing me also. Pins and needles on my face, arms and legs. All these symptoms come and go but I never feel 100%. Just recently my feet have muscle twitches on and off throughout the day. I'm scheduled for a spinal tap next week. Anybody else fell at least some of the things I do? What do I do? My infectious disease Dr basically said I was done with him after the doxycyclene, he didn't even schedule me for a follow-up. He said it might take months for the antibiotics to kick in. Any advice or words of comfort would help.
Posted by ugagal (Member # 18471) on :
Hi Glenn and welcome!
I'm very sorry that you are having such a difficult time with your illness. Unfortunately, your story sounds all too familiar!
Why don't you post your story in the medical questions area as I think you will get many more responses. Goodluck and you have come to the right place for support!!
Posted by just don (Member # 1129) on :
Couple words of wisdom
DONT get the spinal tap,,,it may bite you as they use it to say "YOU dont have that,,see!!!" ITS a very poor lyme test 'if' it was ever called one.
FIND a real deal LLMD and get going down the right road. It will be bumpy enough without those docs your seeing,,,they will say all well,your crazy,,,cant be,,,
Its EARLY for you,,it is still possible to rid yourself,,,take every opportunity to try that,,,get a real LLMD!!! TODAY!!!!
Posted by Glenn (Member # 19455) on :
I want to but I'm having a hard time finding the resource to find a LLMD. I went on lyme disease association.org and their referral site is down. I live in central jersey.
Posted by Glenn (Member # 19455) on :
I know about the crazy part because my primary care doctor thought I was turning into a hypochondriac. Quick question. While having lyme does anyone fell like they got hit by a mack truck when they drink alcohol?
Posted by bettyg (Member # 6147) on :
welcome glenn!
sorry, i can't read anything you posted since i'm neuro patient and we can NOT read or comprehend any long, solid block text paragraphs.
would you break up your entire post into short paragraphs and double space each of them? then we neuros can read and help you
see my guidelines below ok on editing
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
NOTE: you do NOT have to use " ", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "bold" codes so it's regular type text we read vs. the dark, harsh/painful bolding, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and bolding is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
Posted by Starfall1969 (Member # 17353) on :
Hi Glenn,
It seems like you just photocopied my symptom list, because I have many of the same issues as you do.
Were you tested/treated for any of teh coinfections (bartonella, babesia, ehrlichia)? Those can cause just as much trouble as Lyme, and many of the symptoms overlap those of Lyme.
You might want to go over onto Seeking a Doctor to see if you ccan find an LLMD.
Posted by Glenn (Member # 19455) on :
Thanks Starfall. It's good to hear from people who are having similar problems like me. I tend to think to much and sometimes the internet does more harm than good. I can't tell you how many panic attacks I've had although I try to calm myself down by trying to think it out. I stopped looking at webmd.
Posted by Tincup (Member # 5829) on :
You said..
"My infectious disease Dr basically said I was done with him after the doxycyclene, he didn't even schedule me for a follow-up."
Tell him his IDIOT IDSA guidelines say he needs to follow you closely!!! He is also to retreat you if you continue to have symptoms or get worse.
This is not just IDiots treatment you are getting.. it is beyond that.
If he doesn't even schedule you an appointment to follow up.... and you are NOT better and/or are getting worse....
Report him to the medical board IMMEDIATELY. File a complaint.
He is abandoning you.
And get to a better doctor ASAP.
He is worse than useless.
Good luck!
Posted by astriapage (Member # 17120) on :
Just wanted to let you know you are not alone.
I have alot of the symptoms you do, and know how bad it feels when people no longer believe you.
I am grappling with this right now, and it is so hard. Once the doctors start giving up on you, so does family.
I am 30 years old, and have had open heart surgery, and I thought after that I would never have to explain or justify again.
My how I was wrong. I also know how it feels to not have alot of means to do anything about it.
It is so easy for people to say "find another docter", but when you are just barely surviving, that is not so easy.
My point is you are not alone in this fight, and you have come to the best place to get help!
Posted by Glenn (Member # 19455) on :
Thanks. Every day I wake up I probably have 5 or six up and downs throughout the day where I feel great and then my legs feel so exhausted I could barely move them because I don't have the energy. My biggest obstacle is finding a Dr. who can help me. All i've had is 30 days of doxycyclene. I know at this point I need IV treatment but all of the Dr's are lolly gagging with their prognosis.
Posted by Geneal (Member # 10375) on :
Hi Glenn.
Please post your city and state in Seeking a Doctor.
Someone can point you in the right direction.
Make sure you get a copy of all records from the ID duck.
Hang in there.
Things do get better, but you need to be treated by someone
Who is a Tick Borne Disease Expert.
Hugs,
Geneal
Posted by Glenn (Member # 19455) on :
Thanks Geneal. I'll take your advice.
Posted by TF (Member # 14183) on :
Glenn, on March 13 you asked, "While having lyme does anyone fell like they got hit by a mack truck when they drink alcohol? "
The answer is YES!! See the Burrascano Lyme Treatment guidelines. Pages 9-10 are a list of lyme symptoms. See this one:
"Exaggerated symptoms or worse hangover from alcohol."
So, what you are experiencing is a common symptom of lyme disease.
Burrascano is the guru on lyme disease. He is teaching doctors all around the world about it and how to cure it. Read his guidelines found here:
VERY IMPORTANT: Burrascano says a lyme patient should not drink any alcohol. Alcohol use guarantees treatment failure. See p. 17, 20, 27, etc. as some of the places where he emphasizes it. He says this throughout the document.
Alcohol supresses your immune system, so you won't be able to fight the diseases as well. Good lyme treatment fights the diseases AND concentrates on building up your immune system so it can eventually take over and conquer these diseases and keep them under control for you.
So, read the Burrascano guidelines and see all your symptoms listed there. And, see how you can help yourself get your health back.
Get a lyme doc who follows the Burrascano lyme treatment guidelines. In my experience, these are the docs who are getting people well.
When you call for an appt., ask if the doc follows the Burrascano protocol. Call lyme support groups in your state and ask them which docs follow Burrascano.
See "Support Groups" page on left of screen to find the groups nearest you.
And, cancel the spinal tap. This is what the infectious disease docs order so they can say you really don't have lyme disease, or don't have it anymore. I went through that with them. You don't need that procedure. (Send me a private message if you want to know more.)
See what Burrascano says about it on p. 8:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present. It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children."
If you read Burrascano's symptom list, you will know for sure you have lyme disease. So, don't put yourself through the danger and pain and possible problems associated with a spinal tap when you really have no reason to get one.
Although infectious disease docs are the ones who are SUPPOSED to specialize in lyme disease, they actually specialize in declaring that none of us have lyme disease most of the time. They are our enemies nearly always. This is based on many lyme disease patients' experience. Flee the ID!!!
Posted by Glenn (Member # 19455) on :
Thanks TF. This info looks great. I have to peruse it for sure. Quick question since you seem to know a lot about it. Just recently I started getting whopping headaches in the back of my head which sometimes coincide with being lightheaded. I had a CT scan in July of last year and an MRI done in late Oct. They both came back negative. I'm worried and was wondering if it wouldn't be a good idea to get another one. Thanks
Posted by Need Lots of Help (Member # 18603) on :
Glenn,
Headaches are normal for us, unfortunately. We have been to neurologist and they are of no help to us.
Shalome
Posted by Glenn (Member # 19455) on :
Thanks. I figured as much but it doesn't hurt to ask.
Posted by TF (Member # 14183) on :
Headaches and lightheadedness are both on the list of lyme symptoms. So is off balance, buzzing in ears, numbness, pins & needles, chest wall or rib soreness, muscle twitches, nausea, fatigue, muscle weakness and many more that you did not name.
I had nearly all of these symptoms plus many more. Lyme disease can give a person 50 or more symptoms. This is generally more than other diseases. So, the fact that a person has an extreme number of symptoms or complaints is an indication that they may have lyme disease.
With lyme, the symptoms often come and go and also travel around from place to place within the body. Migrating pains, in other words.
You are fortunate to have gotten your diagnosis 6 months after your first symptom. For me, it was about 10 years. Also, if people think you are a hypochondriac and the doctors can't figure out what's wrong with you, that is a very big clue that the person probably has lyme disease.
You can run down lots of rabbit trails with doctors going after each symptom--looking for brain tumors, etc. Or, you can go to a lyme doc and get treatment and see probably all of what you have named just slowly go away.
It's been nearly 4 years since I finished lyme treatment and I am symptom-free, enjoying my life. The key is the doc. Get a Burrascano doc. Don't try to go the el cheapo way.
Skip the rest and go straight to the best lyme doc you can find and get rid of this disease as quickly as you can.
Posted by adamm (Member # 11910) on :
Classic case--everything about it. Forget mainstream docs--go to the referral forum, find one who knows the truth about Lyme, and then learn about what you're up against! These sites would be good places to start:
Good luck, Adam
Posted by Tracy9 (Member # 7521) on :
So sorry you are struggling; please feel free to come and join us also on www.lymefriends.com. It is a great adjunct to lymenet and many of us hang out over there as more of a social networking site.
Posted by Glenn (Member # 19455) on :
![[Smile]](smile.gif)
![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ![[Big Grin]](biggrin.gif)