I have been hit hard with my neuro symptoms for the past three weeks and today it feels as though my brian is going to explode with head pressure, numbness in my hands arms legs, shaking, severe ringing in the ears, confusion, brain fog, weakness.
I have nobody here no support and i just want to be able to function somewhat normal again.
Been on biaxin for the past 10 days it usually did wonders for me but now nothing is calming this flare down.
-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
hugs... so sorry... hang in there.....
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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I had the same exact thing for over three weeks! I am just starting to get control of my body again slowly. I had 2 rifampin pills and the mix with omnicef and just off zithro..it threw my body into an experience that felt like death.
I prayed to end it those weeks and everyone said to hang in there. Being alone with this is horrible. If you need I will send you my phone number and stay with you during this. I coudl not have done it alone so I am here for you.
My llmd had me end ALL abx for a week to stop the tremors and head pressure. My tongues was even rolling backwards and I could not talk.
I want to say be strong now but I realize where you are at. This week, for some reason I am feeling so much better. Even if it is for a short while I will take it!!! I am laughing and walking and the shakes are so minimal.
Keep in touch , Ann
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I am so sorry. You are not alone.
I know a lot of people saying the same things. I think the weather warming up is causing mold growth. I've been following the mold threads quite and bit and am certain it is part of my picture.
As a start, please read this page: http://www.survivingmold.com/diagnosis. Then check out the rest of the site. Then follow some of the very active threads on Lymenet.
Based on the things you said above, I strongly believe that this may be a big piece of your puzzle as well.
Best to you, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
This is not it for you!!!! There are many right on this board who have been right where you are. Giving up is not an option. Always follow the advice of your LLMD, however Annier may be on to something. You may need to stop antibiotics for a few days and detox a little. I too will talk with you if you would like. PM me and I'll give you my number.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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posted
Thank you so much guys. I think if i stop my meds it will get worst. Along with everything i have cough chest congestion associated with my neuro symptoms.
The head pressure and stinging in head and numbness, pins and needle all is out of my control.
I live in europe with no docs and i am running out of biaxin that even makes me more desperate!
-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I can relate......the tingling, numbness etc, is my biggest issue. Had no idea it could be related to mold. I've heard of others who got huge relief with treatment. Please take the time to look into the link I posted above. I had NO CLUE this could be an issue for me. Now I think it may be THE underlying issue that let everything get out of whack in my system.
Dr. K has been talking about this for years, but I never paid attention because I had no clue neuro symptoms were a part of the mold picture. Wish I had clued in sooner.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
You need to reduce your dosage, herxing that terribly (and it IS herxing) is dangerous! Do you have bartonella? Annier and I both had those types of terrible reactions while treating bart, and anxiety/depression is one of the things that also goes out of control--even though it's perfectly understandable because the symptoms are so insane!
Hang in there, but cut back on your antibiotics before things get worse (if you don't feel comfortable stopping them for a week, but even if you DID stop them, whenever you resume I would take half of whatever you are takign right now--this is too much for you).
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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nefferdun
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Member # 20157
posted
Hang in there! Are you only taking biaxin? Did it worsen when you started taking it so it is a herx, or could it just not be hitting the infection? You might also have a drug reaction so it might be a good idea to stop it and detox for awhile.
As you are in Europe, you might try the macrolide, roxithromycin because it crosses the blood brain barrier. Biaxin doesn't ( it is also a macrolide as is zithromax).
When you have really bad neuro problems Burrascano says to suspect bartonella. Babesia caused me to have a lot of neuro problems.
If what you are experiencing is a co-infection, biaxin will not affect it much. Have you been tested?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lyme in Putnam
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Member # 11561
posted
Do what u have to to get through. Rifampin almost put me away. My doc started me on 600 mg. Cut it down to 300 just couldn't do it. Had to get off. Hold on. It's a sad misunderstood sick disease that no one gets till they have it. Feel better.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
NO YOU HAVEN'T. It might feel like it right now, and it may feel like it again tomorrow, but even taking baby steps towards the castle to be stormed can get the job done.
Do you have any methylB-12 on hand and some good magnesium? Are you doing anything for detox at the moment? Some things to consider perhaps.
In the meantime, no way you're alone! See?
PS Ditto to the Roxi sugg above- supposed to be very good for that BBB reason posted.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
Sonnee, I feel the same way. I just want to walk away from life, I'm done.
But I can't leave this world, I am here, and this is my life...
One thing that helped me, perhaps more than all of the thousands spent on abx and herbs, etc., was/is homeopathic remedies. In Europe, I believe homeopathy is used much more frequently. And homeopathic remedies are so cheap. I feel my best days have been a result of the homeopathics. Finding a goood homeopath might help you get over this hurdle. If not that then maybe something else.
I'm sorry you are hurting. I've been crying all day myself (which is soooo not my style). But I think it's possible that if we really want to get better, we will find our way through this sooner or later, one way or another. Perhaps we will even find that we are happier people than we would have been without this huge challenge. I'm not big on affirmations or popular notions of positive thinking as cure. This disease sucks and I think it's good to vent and not to feel the need to "be positive." F--- that. Just don't give up.
Posts: 87 | From NorCal | Registered: Feb 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Sonee, where are you in Europe? There are some Lyme doctors in several countries in Europe, thou not as many as in the states.
Tell me where you are living and so we can see if we can find you a doctor to help you.
Have you joined the EuroLyme Yahoo group? They can offer you help, too.
Hang in there please.
Posts: 5188 | From Lyme Zone | Registered: Jan 2009
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
sonee123, I am so sorry you are going through this. May you have renewed hope...Hope is powerful in the healing journey.
I use this product and it totally has eliminated my neuro symptoms. Neuro-Antitox II CNS/PNS. It is one of the things that has given me my life back...and especially my mind–I like having my right mind!
It is the third item listed. You can check it out at
You'll notice this formula also comes in "basic", "cardio" and "skeletal".
FYI: I do not sale this or any product. I get no compensation of any kind. And BTW I am not a doctor.
Posts: 2188 | From Oklahoma | Registered: May 2008
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Just to let all of you know i pulled through last two days and my head pressure has calm down. I am so scared it will come back. I am still hit hard with neuro symptoms and cough that comes and go but at least a truck load of bricks on my brain is better!
I live in Denmark. I just need some help to get through this...I feel alone and desperate. It's like i almost want to leave my life here and go back to the states for some help!
-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
sonee123...
This is a rough road, but you are not alone. We are all here for you.
Hugs & prayers to you. I hope you feel better.
May God heal you soon!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Denmark, Eh? That's nice. Oh yes, Lyme questions and you feeling like it's over. I know you've gotten a lot of good responses. Hold it...I'll type slower...You might not speak english.
OK, here are my observations, based on having Lyme more than 20 years:
As you can tell from my weak attempt at humor, we gotta try and laugh because the spirochetes are certainly trying to kill us.
Medically, biaxin alone is almost worthless. That class of antibiotics must be combined with at least one more antibiotic of another class to be effective. Then the biaxin will be effective. See if your doc will prescribe Ketek. Much more effective in the same class (FDA concerned about liver problems).
As part of the antibiotic cycle, must do a cyst buster, like flagyll.
Even if you don't feel like it, EXERCISE! (sp?) Besides, the spirochetes hate oxygen.
Good luck. Hang in there. We've all felt that bad. We're all in this together. And one day....
We'll Win
Posts: 107 | From maryland | Registered: Feb 2007
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posted
I also tried the neuro-antitox II CNS/PNS and it did nothing for my neuro symptoms. Glad it works for some, but didn't help here.
I also know what it's like to want it to end- I have one of the most severe cases of neuro-Lyme (and coinfections) that a local Lyme expert has seen in 10 years treating Lyme. Pain that never stops, even on the strongest pain meds (and highest dose) on the planet, chronic exhaustion that's kept me bedridden 22 hrs a day for 5 years, terrible nerve damage that causes non-stop tremors at night and at times has prevented me from being able to urinate (having 10 times more urine backed up in my system than should be there- think about that for a moment). Anyhow, not one to compare but believe me, I've been beyond the end of my rope many times. All I can do is look forward to heaven, and it's not coming fast enough!!!
-------------------- m2 Posts: 13 | From Redmond, WA | Registered: Aug 2008
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chiquita incognita
Unregistered
posted
Sonnee, I am so glad to read that the worst of it passed for you and that you are doing better. Was going to write and check in to see how you are doing.
You stay in touch with us and know that you have our support here, at any time that we can be of help! Hugs....
When I first started with lyme treatment, I was in exactly the same place you are now. And in some very harsh flares after having a bad side effect from bactrim, I was also in the same place.
Well by golly, we make it through don't we. Things are almost never as bad in reality as they are in our head.
The head rushes to all the worst things, but those don't usually end up being the case.
Usually, it's False Evidence Appearing Real (FEAR). Smaller things can masquerade as bigger things.
Then we think we have no way out. But that's part of the illusion. Fear lies. We think that we are on a downward spiral. But the truth is that things pass and then we continue on an upward spiral, with continued help.
I have found in my life that just when I am about to go into a black hole, the hope comes. The darkest hour is just before the dawn, and the light is usually around the corner.
Here is something that really helps me to calm down nerve agitation in the body:
Coconut oil rubs, all over my body, especially alongside the spine to soak it up in the nerve's root
Tocotrienols to help with nerve inflammation
Ask your doctor for nerve anti-inflammatories
Lavender oil on the body can be helpful too
Lots of extra detox things during herxing and lots of toxin absorbers like charcoal, fiber, chlorella to bind with toxins, epsom salt baths for calming magnesium with lavender oil for uplift....
Ever tried a chamomile compress on your forehead? Or a lavender oil rub on your temples? If you can get this in Europe, the product called Headache Take Care by New Chapter Organics really works well, but will not irritate the stomach like aspirin will. Try www.iherb.com or www.vitacost.com
I hope this is helpful!
We are all sending our best wishes, CI
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