(I have lyme for at least 5 years, but I started ABs only half year ago.)
3.5 years ago I had an extreme bad headache for a few days after an accpuncturist used a laser at my neck. After that all my scalp became numb:( and my brain fog became strong.
1.5 years ago I drank some herbs for about 1 week and a few days after that I had a strong attack with heat intolerance, airhunger, head pressure, axiety, panic... and all my body became NUMB from chin,neck,chest...to feet. (but my scalp was already numb). Also I had to go to the washroom many times.
Now all my body is still numb and I have the brain fog 24/7. I don't know why my numbness didn't improve from ABs. I already took Biaxin, Cipro, Tindamax, Plaquenil, Rifampin, Azithro, Doxy. Nothing helped me. I feel that my numbness is deep, it's not only in my skin but in my muscles too.
I would like to know what causes it and is it permanent? I never read about others who has all body numbness... I feel nothing helps me just makes me worse.
Posted by richedie (Member # 14689) on :
I have not had full body numbness but have had numb spots. I hope you feel better. What's your doc say?
Posted by hope_29 (Member # 22363) on :
I have been to many doctors but nobody had any idea.
And unfortunately most of the doctors don't believe in chronic lyme.
Posted by richedie (Member # 14689) on :
quote:Originally posted by hope_29: I have been to many doctors but nobody had any idea.
And unfortunately most of the doctors don't believe in chronic lyme.
Those docs are idiots! I tell them that to their face.
Posted by Keebler (Member # 12673) on :
- " . . . unfortunately most of the doctors don't believe in chronic lyme."
Have you been able to get to a Lyme Literate doctor?
With the long list of abx you've taken, it would seem so. But, in this thread of yours, it appears that you are treating yourself and getting the meds on your own and that you have no LLMD. ?
I had an LLMD here who gave me ABs for only 8 weeks, and than he told me I should have improved with it. He didn't give me more ABs.
He told me he doesn't give me more ABs because it won't help me...
After that I took ABs by myself.
Now I have an appointment to Dr.H but I'm afraid nothing helps me:(
Posted by lindaca (Member # 23871) on :
It doesn't look like you've taken anything for babesia yet. Per one of Dr H's presentations:
"Lyme patients with features of MS, ALS, PD, severe chronic depression have Babesia until proven otherwise (current test are not sufficient as proof of absence)."
Posted by TF (Member # 14183) on :
Hope, you have not seen a good lyme doctor yet. I believe that is why you have not improved.
A good lyme doctor would not expect your symptoms to go away with 8 weeks of antibiotics.
The doctor is the key to getting rid of this disease. I cannot stress that enough. The doc is the key.
Get to the best lyme doctor you can, and I believe you will get better.
Even 6 months is not very long to be taking medications. So, you should be very hopeful that all of your symptoms will go away when you get GOOD lyme treatment.
I got poor lyme treatment for over 2 years. Then, I got to a doctor who followed the Burrascano protocol, and in 1 year I got rid of lyme, babesiosis, and bartonella. ALL of my symptoms went away with good treatment.
It has been 5 years since I completed my treatment and I am still symptom-free, enjoying my life.
I had undiagnosed lyme disease for at least 10 years before a doctor thought to test me for lyme. I probably had lyme for much longer than 10 years, looking back.
I have friends who had this disease for years (20 +, diagnosis of fibromyalgia), with continual brain fog, etc. They have completed treatment and are normal now. They all went to Burrascano type doctors in my area.
Do not be discouraged. Get to an expert and see what happens.
Let us know what happens at your appointment with Dr. H.
Posted by hope_29 (Member # 22363) on :
Lindaca, I took Plaquenil which is good for babesia but I didn't have improvements. I lost more weight and I didn't have appetite.
TF, It's really good to hear your success story:) I'm just discouraged because I already tried many kinds of ABs and I am not better. I am the same or worse than before ABs. But while I was taking them I was worse, I had fatigue, insomnia, anxiety.... when I could sleep, many times I woke up with airhunger, sweating.... and feeling crazy....
I will meet with the N.P. of Dr.H next week because I wanted to go asap. Now I just don't know how I will handle the flying.