My symptoms started with being very tired. Then my speach began to slur, drooling, very bad tremor in one hand and stiff neck.
I've been to a few internist and infectious disease claiming to be Lyme specialist. The blood test say high for Lyme but then the doctors state it really isn't. These doctors are stating I do not have Lyme Disease and it's either nerves or neurological. I am also being treated by a Neurologist as well who was the doctor who finally prescribed me on Doxcycline.
Once the Doxcycline kicked in my symptoms lessoned and my speech is back to normal. Very Scary.
I would appreciate answers from others that have had similar symptoms..
Thanks for all your help Courageous Angel
-------------------- CA11 Posts: 8 | From New Jersey | Registered: Aug 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Look into treating parasites which can play a MAJOR role in Lyme disease. Drooling is on the symptom list for parasites.
Google parasite symptoms and do a search on here for parasites.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
By all means, start treating parasites, and you will be miles ahead.
Posts: 9834 | From Washington State | Registered: Oct 2000
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lymeboy
Unregistered
posted
how long does it take to treat parasites, and do you need to be off antibiotics to do so?
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It sounds like what you were experiencing was encephalopathy but probably not actual encephalitis. It is basically a lower level of brain inflammation. And yes, your nerves were probably inflamed as well.
Lyme goes to the brain and central nervous system quickly that is why it is so hard to treat effectively and the dose of doxy will determine how much crosses the blood brain barrier. If you have inflammation then you have a weaker blood brain barrier and higher doses of the meds get into your nervous system. But as the inflammation goes down less antibiotic gets into the brain and nervous system unless the dose is high enough.
What dose of doxy are you on? If the dose is not high enough you may only have short term improvement.
Glad to know that the doxy is helping. But you need both a high dose and a long enough treatment to get well.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
YOu need an LLMD, not a non-Lyme Literate neurologist, etc. Post under Seeking a Doctor to find good drs in your area.
Posts: 3778 | From around | Registered: Mar 2008
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posted
Perhaps instead of focusing on parasites or an entity causing the neurological symptoms you have described, maybe considering the process may be more helpful.
You mentioned the doxy putting an end to your symptoms of drooling, hand tremors, and slowed/slurred speech. So an anti-infectious agent has been used with resolution, so your symptoms could be due to parasites, doubtful, or an infectious agent. Doxy doesn't work so well on parasites. Yes, parasites are involved with Lyme, but not every resulting symptom is due to parasites. Just saying....
What might be more helpful is to look at the brain neurotransmitters, and their role in this disease. I think you will find some helpful information concerning your symptoms with these two links.
In looking at the brain neurotransmitters, it is here, one can learn about the resulting neurological effects of Lyme. One of those being mitochondrial neurogastrointestinal encephalopathy disease and other alike encephalopathies.
Lauirel
-------------------- �Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it�s the only thing that ever has.� Posts: 149 | From Kansas/Missouri | Registered: Aug 2008
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First regarding parasites. I have to say the drooling was very little it was more the loss of speech which I am deathly afraid of happening again.
My me at thi time is Doxcycline Hyclate 100MG Capsules so I am wondering if that is a high dosage. As I am afraid of it coming back again.
I am at a Neuroligist to check for other things like Parkenson's Disease since my hand was shaking ridiculously not as much at all since the meds. But he had to put me on something as I was going down and fast and the internist didn't help.
So I am now scheduled for like 3 LLMDs. The problem is getting into them in NJ. One took blood work but I will not find anything out December. I got a list of providers from here and boy is there conflicting information on these doctors.
Any help is appreciated. CourageousAngel
-------------------- CA11 Posts: 8 | From New Jersey | Registered: Aug 2011
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posted
Just as an FYI. My mom has Parkinson's and she has all these symptoms when her meds run out.
However, what is causing the symptoms is probably an infection, either Lyme or it could even be viral, fungal or parasites as mentioned. Test everything and see what comes up.
Good luck
Posts: 247 | From Ca | Registered: Feb 2007
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posted
those symptoms aren't unusual at all if you have Lyme Disease.
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You said you are on Doxycycline Hyclate 100MG Capsules, but we need to know how many you take at a time and how many times a day you take them. That will give us your prescribed dosage.
Then, we can tell you if it is high enough or not.
Posts: 9931 | From Maryland | Registered: Dec 2007
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Drooling was parasites for me.
Everytime I started a parasite treatment I'd take naps and wake up to drool!
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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The reason I thought it was unusual was because that is what doctors have told me. Thanks for the info.
TF - I'm taking 100MG 2 times a day and have been on it a little over a week and I am feeling much better but still waiting to see a Lyme specialist which is a wait to get proper treatment since one who claimed to be know lyme stated it was stress and I needed to go on anxiety meds. She also claimed my voice wouldn't come back to normal but the doxy cleared that up for the time being.
Canefan17 - not really drooling it was more the voice and spitting with a little drooling. Again the Doxy cleared that up for now.
-------------------- CA11 Posts: 8 | From New Jersey | Registered: Aug 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
100mg twice per day is the standard dose given by non-lyme literate doctors.
A lyme doctor would give you more. Here is a quote from the Burrascano Lyme Treatment Guidelines:
"*Doxycycline- Adults: 200 mg bid with food; doses of up to 600 mg daily are often needed, as doxycycline is only effective at high blood levels. Not for children or in pregnancy." (page 18)
If you have not already done so, I suggest you read and study this document to get an education on this disease and what good lyme treatment looks like.
It will also help you to understand what your lyme doctor is doing and what is happening to you.
In the quote above, Dr. Burrascano is saying to take 200 mg of doxy twice per day (bid) with food and also that some people need up to 600 mg per day.
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote:Originally posted by TF: [QB] 100mg twice per day is the standard dose given by non-lyme literate doctors.
A lyme doctor would give you more. Here is a quote from the Burrascano Lyme Treatment Guidelines:
"*Doxycycline- Adults: 200 mg bid with food; doses of up to 600 mg daily are often needed, as doxycycline is only effective at high blood levels. Not for children or in pregnancy." (page 18)
If you have not already done so, I suggest you read and study this document to get an education on this disease and what good lyme treatment looks like.
It will also help you to understand what your lyme doctor is doing and what is happening to you.
In the quote above, Dr. Burrascano is saying to take 200 mg of doxy twice per day (bid) with food and also that some people need up to 600 mg per day.
- Stay on the doxy at all costs!!! Get more at all costs!
Read, read, read so you will understand what you are up against. You have a formidable opponent! After reading the above link .. begin here:
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