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Posted 3/9/2011 10:17 PM (GMT 0)
Hello..I was treated and diagnosed with lyme last summer. It was severe with nerve damage and I was hospitalized for a long time. I was better for a while..and now I feel so bad everyday..I feel so tired and worthless to my family. I don't know what to do. Should I find a lyme doctor. My private doc says I'm over lyme, but can't ever diagnose my symtoms. Please tell me I'm not alone. I don't know anyone with lyme to compare my symptoms to. Can anyone help?
Posted 3/9/2011 11:37 PM (GMT 0)
Hello Glndry, welcome. Sorry to hear about your recurring symptoms. Yes you should find a LLMD, Lyme literate MD.
Lyme disease is not curable unless you've been treated within 7 - 14 of the first bite, had the correct dose of the right drug. And that's not always a "sure thing".

No, you are definitely not alone.

Give us detailed info regarding your symptoms and we'll help as much as possible. In the mean time, read all the "new to Lyme" posts. They are super helpful!

Much blessings to you and your family,
Lisa
Posted 3/10/2011 3:13 AM (GMT 0)
Welcome to the board and to a bunch of friends that will always be here for you to help and answer your questions. Get yourself to an LLMD as fast as you can. The faster you do, the quicker you will feel better. Trust your instincts. Doctors do not know lyme and only you know your body. Research, research, research and think positive. I struggled with the positive part and it really does make a difference. Lyme is a lifestyle change and a relentless disease but there are many many ways to feel better. The most important part right now is getting a doctor who will work with you and for you. Good luck.
Posted 3/10/2011 4:14 AM (GMT 0)
Hi Glnddry!!
Welcome to our forum!! I am glad you found us!! Although I am also sorry that you have a need to be here.

I agree with the others have told y ou - get to a LLMD! You do not sound as if you are healed from the tick-borne infections! Do you know if you have any co-infections?

What kind of doc treated you? Very few docs other than LLMD's (in Western Medicine) understand the complexities of Lyme & other tick-borne infections.

Giggle!! You now have possibly more people to compare with than you wanted!!! You are not alone, far from it! We are all here to help you find your way.

It would be very good for you to read the thread at the top of the forum titled, "New to Lyme?...Start here!", even though you are not new to Lyme. It has a lot of really great info as well as some very informative links!

If you need help in finding a LLMD, just start a new post - include a city & state - asking for help in finding one.

I hope this helps a bit!
Trav
Posted 3/12/2011 5:12 PM (GMT 0)
Hi Gindry,

How are you doing?

Hope you found a real lyme doctor.

Your doctor's response to you is the real plague in this country "Ignorant arrogant people posing as medical doctors."
He should himself be finding you a lyme tick borne specialist .

Too many people are very sick to this day because of being under treated and then not heard.

You have to get on this asap before you turn into the next lyme disaster.
Too many of us were in your position years ago and now are boxed in with autoimmune conditions and
not to mention loss of their functioning lives and relations with their own family.


I hope you will keep us posted on your search now for a doctor.
You could actually take care of this and be free if you get the right treatment because you were recently infected and PARTIALLY treated but only if you get immediate treatment NOW.

stay in touch and welcome.
Posted 3/14/2011 7:43 PM (GMT 0)
Your doctor is clueless. It's not his fault as he's only telling you what he know's based on his training, which basically is none when it comes to Lyme disease.

Yes, you do NEED to see and LLMD. If you want to get well, the sooner you see an LLMD the better your chances are of getting better. Not to put down your doctor, but if everyone who contracted this disease followed the advice of their GP, they'd be deathly sick, or very possibly dead by now.

Yeah, I know it's blunt, but the ONLY way you are going to get better is by seeing someone who's experienced at treating this disease. GP's have little to no experience in treating this disease, and most of them know very little about it. In fact, most GP's will tell you Lyme does not exist where you live. Lyme is an epidemic and it's rampant everywhere.

If you need a referral to a LLMD just ask for one and there will be a couple of people who will follow-up and give you the information you need to get in touch with an LLMD.

Please, do yourself a BIG favor, see an LLMD soon. You won't regret it.

Gary
Posted 3/16/2011 7:35 PM (GMT 0)
Hi Gindry:

I hope you have found an LLMD by now. I wanted you to know that I think I've had Lyme for MANY years. I have over 20 lesions on my brain and it wasn't until after I had my gallbladder removed (which was probably damaged by the lyme bacteria) that my symptoms began in earnst.

Approximately two weeks after my surgery, I started have MANY nervous system issues. There are many but here are a few:

Vibration/tingling in legs/feet
Trembling in hands
Twitching EVERYWHERE
Vibration feeling in core of body
numbness in left foor/lower leg
numbness in left toe
numbness in groin area that wrapped around my leg
numbness in my face under my left eye on cheek

Many many more...too many to list. Anyway, I've been seen at UCSF and had soooo many tests. All except for first MRI were negative for MS and all the other mimics. The first thing my doctor asked me when he saw my MRI with the lesions was "have you had lyme disease". He was a younger doctor and I have a feeling the younger ones may be finally "getting it". My lesions were not typical of MS...wrong shape, wrong location, etc. I also had a lumbar puncture while at UCSF and they retested for lyme but it was negative (I now know that 20% of people with lyme will NOT show in their spinal fluid)

Anyway, long story short, turns out I do have lyme with a co-infection of ehrilsos (sp?). I need to learn to spell that... I found an LLMD in San Francisco who is very well known and luckily, got right in to see him because he had a cancellation. LLMD's are very booked, so make your appt asap if you haven't already. I started on antibiotics that night (I had already ordered and completed my bloodwork from Igenex prior to my appt) and now, about seven weeks later, I am feeling MUCH MUCH better. I still have some bad days with fatigue, but I think those are days that my body is herxing, so I look at those days as a positive sign.

Regarding the nerve damage, I was freaking out that my numb areas were permanent and my LLMD said, no, the nerves are just imflamed from the bacteria, and sure enough, after about a week or two, all my numbness dissappeared!

Anyway, I know I still have a long road to go but I AM GETTING BETTER!!!!!! AND SO WILL YOU!!!!

Carrie
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