Topic: nuro symptoms- crying-not wanting to talk-slow movements-etc., when to see dr?
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I started treatment couple weeks ago with minimally lyme lit dr.
I have felt OK. trying to keepup with suppliments, etc.
had bad days here and there with ok days mixed in
today bad day. Lots of syptoms (herx? or progression?) like loud tinitus, walking slow and wobly, not wanting to speak (too much effort) staring and space out, pain, great fatigue, forgetting, paranoia....
do I just deal with this all or is there a point I should go to ER or call my general practioner? LLMD is far away.
What I mean is- is any of this serious enough to really be concerned or is it more physical stuff to be concerned over?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I call the kind of day you're having a "flare day".
Before lyme dx, I had this non stop plus bell's palsy, and twitching and not being able to eat drink or kiss without making a mess for 4 months steady. Also had excrutiating head pain and vision issues, and memory lapses, random fainting and heart rate between 40 and 60 beat per minute.
I get these days now about once per month when I am PMSing. About 10 days before my period.
Those first coupla months were scary.
I went to ER twice, both times they IV'd me with hydromorphone and migraine meds and sent me home. They called the above symptoms, "the aura stage" of migraines. Didn't matter that I had a fever, or the aura stage lasted for 4 months instead of 30 minutes...
If you feel like your life is in danger then by all means go there. Seizures, low heart rate, high heart rate, fainting etc. Anything you feel is life or death then definately go. Just don't drive yourself, as you'll pay a fortune for parking and the meds they give you may make you groggy.
Best wishes, Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes, I have so many symptoms... it's crazy!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks Greta
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
When I felt like that, I would always contact my LLMD and they would have me take an antibiotic break to give my body a break.
posted
Sorry to hear this, Lisa. My husband's neuro symptoms were out of his LLMD comfort zone, and I'm wondering if your minimally LLMD can deal with them effectively.
One option would be to see a neuropsychiatric Lyme specialist in NJ, Dr B, in addition to your LLMD. He might be able to give you additional help with some of the worst neuro symptoms.
Posts: 431 | From New England | Registered: Dec 2011
| IP: Logged |
What has helped me most with the symptoms you are describing are coffee enemas. They work quickly and reduce symptoms dramatically! I hope you feel better soon.
Denise
Posts: 428 | From Midwest | Registered: Dec 2012
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Do all you can do to detoxify. So, for example, drink lots and lots of water and eat lemons, as many as 4 per day. This can really help lyme symptoms.
Here is Dr. H's formula to help a person detox:
Herxheimer reaction (from 2010 Lyme Conference, Dr. H):
Take-home message: DETOXIFY YOUR LYME PATIENTS!
It does NOT matter what antibiotic you give people, they will NOT get better without detoxification
For Herxheimer reactions: 2 Alka-Selzer Gold (no aluminum) in 8 ounces of water with lemon or lime followed by 6-8 capsules of glutathione or 1500 mg of oral liposomal glutathione.
70% will feel better in hours
On the topic of water: Dilution is the solution to pollution. This suggests that in order to help our bodies detoxify, we must drink more water
[end of Dr. H notes]
When I was treating lyme, I made water with lemons squeezed into it my only drink. I drank only this the entire time I treated lyme and coinfections. My flares and herxes were mild. You have to use fresh lemons.
Lemons are the natural cleansers of the body. And, water flushes out the body. That is what my lyme doctor told me.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
so whole lemons or just the juice is ok??
I find myself feeling like I am giong to vomit sometimes at the THOUGHT of more water! I know I don't drink enough, but for some reason I feel so sick to myself about water and a lot of the time swallowing water with my antibx.
I like lemon, but it seems to make me feel so sour in the belly. Is this OK?
Thanks everyone I will take all info into careful consideration!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You cut up the lemons and squeeze them into the water. I often scraped some of the fruit into the water also. You don't have to eat the pulp (white rind part).
If you don't flush out the dead germs from your body, you will definitely feel miserable. You have to drink a lot of water to do this.
In the morning, you can drink hot water with lemon. Later in the day, it can be ice water with lemon, or any temperature of water that you want.
But, water is the key.
The Alka Seltzer Gold often works wonders, as does lemon water. If you are not on glutathione, you need to try it.
Lyme is a very slow growing disease. So, the likelihood that your symptoms are from a progression of the disease is about zero.
Rather, you are most likely experiencing the herx or die-off reaction that occurs when people start treating these diseases. It is a must that you detoxify your body from these dead germs. Otherwise, you will never feel better.
The coffee enemas are another way to detoxify yourself.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
TF, I had EM 15 yrs ago and went untreated all this time because of dummies. There is a possibility that it is progressing since I am not on any heavy duty abx plan at the moment and only found all this out like 4 weeks ago due to a HUGE neuro fit of manic emotions, comatose staring , inability to talk, and robotic gait. Is 15 yrs slow enough?
This site and a few others convinced me that I have some TBD. so I found dr to give me "entry" abx....now waiting for experienced LLMD apt.
My GP thinks I have a brain tumor
I am going to try lemon
gonna check out glutathione ....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
LisaK, I have had the same symptoms as you plus some others. I've had Lyme about 7 years. You should definitely check out the brain tumor to rule that out.
However, be aware that Lyme can cause brain lesions. I have a 1/2" one. I've heard that antibiotics can cause them to go away. Here's hoping.
So sorry you're going through this.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Shiela, thanks, I had MRI 2.5 yrs ago and it was pretty normal. Now I don't have insurance, so.... ??
I have apt with neurologist in a couple weeks. I will see what she says. I wonder if I should mention ticks........???????
What do the lesions do? I mean are they very bad to have?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
GPs are not necessarily knowledgeable when it comes to neurological things, so I wouldn't worry about what the GP thinks too much. (Mine thought I had ALS). The neurologist will no doubt be more help than the GP. If you did have a lesion, the symptoms it would cause would depend on where it was.
I wouldn't name my Lyme doc if I were you. I told my neuro that I was seeing a Lyme doc. If she knows you had an untreated EM rash, it might help her come to a diagnosis or at least rule other things out. Lyme can make things really tough for a neuro since it mimics so many things.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
| IP: Logged |
posted
My doctor suggests taking Charcoal capsules for detoxing.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Good idea- don't tell I'm seeing Dr, but mention rash, etc. I like this one! I will try.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Good luck with the neuro, Lisa. In general, neurologists are the enemies of lyme patients. They treat us horribly. I hope this doesn't happen to you, but my guess is that it will.
I went to a neuro with a positive LabCorp blood test for lyme. My GP sent me to him. He ordered a brain scan that showed 2 UBOs (unidentified bright objects) and the report said "Lyme disease cannot be ruled out."
In spite of all of this, the neuro treated me like I was a mental case and yelled at me, "You don't have lyme in your brain! Do you hear me? You don't have lyme in your brain."
So, I said to him, "Well, doctor, how can you say that when the brain scan report clearly says that lyme cannot be ruled out?
So, he had no diagnosis to offer me and no explanation of what could have caused my UBOs--just that I didn't have lyme. And, he treated me so horrible that I am just writing to warn you of what will likely happen with you.
Also, just want to warn you that neuros order spinal taps and other expensive brain tests to try to find the cause of your problem. One such test is the EEG-- where they put electrodes on your head. I would not do the spinal tap if I were you. Just tell him you want to skip that one for now. They do the spinal tap to rule out other diseases that may be causing your problem. These diseases are: HIV/AIDS, syphilis, and lyme disease. So, when the spinal tap is negative for lyme, they can tell you you don't have lyme disease in your brain. (You see, they don't know that lyme rarely is found in spinal fluid.)
Very, very few people have lyme show up in their spinal fluid. Burrascano says this on page 8. Almost always nothing shows up in the spinal tap.
The neuro will likely get angry if you say you will not have the spinal tap. Spinal taps are what they do!
Post here before you decide to have a spinal tap to hear from many lyme patients about that particular test.
You may want to have the EEG in your case based on your symptoms. At least it is not a dangerous or painful test like a spinal tap. Read up on it and be prepared to decide whether or not to pay the bucks for this test.
The brain scan is a very worthwhile test to see if there are any abnormalities in your brain. However, lyme can cause various abnormalities but the neuro cannot say what the cause of the abnormalities is. If money is limited, this may be the one test you decide to get.
At least I was happy to know that I had brain abnormalities. That was my proof that there truly was something physically wrong with my brain. You should be able to pick up the report of your brain scan a few days after you have it done. You don't have to wait for the doctor to give it to you.
Read "SPECT Scanning of the Brain" on page 6 of Burrascano to understand what this test can do/show.
Neuros and infectious disease doctors are not the friends of lyme patients, with very, very few exceptions.
Now, many years later, I realize that I should have skipped the neuro and just begun looking for lyme literate doctors.
So, go to the neuro to see if he can find a cause for your symptoms if you truly need this type of testing to give you peace of mind. But, if he can't find a cause, just chalk that up to being par for the course. Don't expect him to know anything about lyme and don't expect him to suggest lyme disease as the possible cause. Just use him to rule out other neurological things.
I would not even mention lyme disease to him or things could go south. See what he brings up as possible causes of these symptoms.
I wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
- a lot to think about.....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic