posted
Leg muscles twitching Ears feeling full Feeling of falling in ears Dizziness Shortness of breath when walking Heart pounding On and off palpitations Cannot stand for long periods of time without dizziness
Tested positive for bartonella waiting lyme results. Anyone ever have these types of symptoms and did you get better? If so how long and what helped?
I have been on antibiotics now for about a month. Tested negative for pots. Heart size shape ok.
Just frustrated. Was hoping I would feel better before the holidays. I can't go anywhere with my kids and sit here all day hoping tomorrow will be better. Thanks for listening.
(breaking up a paragraph for easier reading for many here)
[ 12-19-2016, 08:36 PM: Message edited by: Robin123 ]
Posts: 8 | From United States | Registered: Jan 2016
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posted
Definitely leg muscles twitching! That was my main symptom first time around. Try magnesium - it did wonders for me.
Ears feeling full - yes. I went in to regular doc, and there was a whole lot of wax build up, which had never happened to me before, ever, but it coincided with Lyme. Doc cleared it out, and it was much better. That could explain dizziness, too. So could Abx, though.
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
What did your doc say regarding a clinical diagnosis of babesiosis? Some of what you are describing is specific to babesia, but it could also be side effects of meds or Lyme.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
I am on Riframpin and Biaxin. The symptoms started in September and I only started these meds in mid November. Previous to these I took Mepron and Doxy for a month while waiting for labs.
Posts: 8 | From United States | Registered: Jan 2016
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posted
Leg muscles twitching could be due to lack of magnesium, so I'd suggest considering finding a magnesium version you can handle or upping the one you're on.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I really like my current dr and he is an llmd but he doesn't do herbals (tries antibiotics first) and he likes to rule out other causes of symptoms.
For example because of my heart isssues (dizziness pounding shortness of breath when walking) he is sending me to a cardiologist for a stress test.
I would obviously like to know if something is wrong with my heart but on the other hand I know these kinds of symptoms are not uncommon.
Why not hit it hard with antibiotics and herbals from the start.
Just frustrated and friends/family are like I hope you fail your stress test so they know what's wrong with you. They don't understand that if I "fail" it that means I have a blockage and need some intervention.
And if it's negative they will say oh they need to try something else to find out what's wrong with you. But to me we already know what's wrong. Thanks for letting me vent.
(breaking up the post for easier reading for many here)
[ 12-22-2016, 07:16 PM: Message edited by: Robin123 ]
Posts: 8 | From United States | Registered: Jan 2016
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< don1228 >>>>>,
Welcome to LymeNet, I was wondering if you might have babesia issues,as well. it seems many of us have Lyme, Babesia,and Bartonella as well.
Magnesium really is excellent for twitches, and can help in many cases with heart issues too.
This LymeNet family is great about letting us vent. We have a frustrating Disease,and in many cases, Cluster of Diseases [co-infections].
And many, many people, sadly including all to many doctors have no idea of what Lyme and co-infections can do to a person.
My hubby, TrekCoord, is going thru heart issues, The VA hospital and clinics here, treat him, but they will not even consider, Lyme Disease and it's common Co-infections.
[And contrary to popular opinion VA care is not completely free to all Veterans].
I hope that you can find the right combo of meds/supplements/and vitamins for you. In the case of Lyme and co-infections, It can take a long time. Do not give up,and when you need to, do please vent. We get it!
May your Holiday season, be full of joy and good things, even in the midst of treating these issues.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Thank you silverwolf. I will not give up.!! Just emotionally drained this week.
Posts: 8 | From United States | Registered: Jan 2016
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posted
Sounds like a combo of POTS symptoms from babesia.
My twitching got better with vitamin D and not Mag, but mag is worth trying too.
It can take a long time to find the right thing. Hang in there!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Don1228, I'm sorry your friends and family are having difficulty being supportive. I know from experience how painful that is. The good news is you found a wonderful support group here.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
don, please don't hold it against your lyme doctor that he is sending you to a cardiologist. He pretty much is required to do that when a person lists heart symptoms.
So, it is common for lyme patients to be sent to such a doc. The doc has them wear a Holter monitor for 24 hours. The test shows no abnormalities. Then, the lyme doctor can continue treating you without fear of being hauled up on charges for not considering heart trouble in the differential diagnosis.
Also, the doc has to be sure that there is no heart problem as that can be fatal.
As others have said, if you have bartonella, the chances are that you also have lyme and babesiosis.
The best thing you can do for yourself right now is to become an educated patient. The best document to read is the Burrascano Lyme Treatment Guidelines found here:
When he was practicing, Burrascano was the #1 lyme doctor on the planet. He wrote this document to teach other doctors about lyme, so it is not an easy read.
Read it bit by bit, and basically memorize it. This way, you will understand more of what the lyme doc is talking about. And, most importantly, you will be able to evaluate your lyme treatment.
This way, you will know what good lyme treatment looks like. Then, if you see that your doc isn't treating your diseases properly, you will know that it is time to move on.
I wasted 2 LONG years taking antibiotics from a doc who didn't know enough to cure me. Once I studied Burrascano, I knew something was very wrong. Then, I got to hear Burrascano speak at a lyme conference and got to submit a question to him.
He said that what was going on with me indicated that my therapy was inadequate. I knew it! I knew that what my doc was doing did not line up with the Burrascano Guidelines at all.
Sorry to say but this happens with quite a few people. So, with this disease, there is no substituted for an educated patient. It will speed your search for health!
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has (including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. If possible, you want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. He was the most successful lyme doctor on the planet. They came from every country in the world to be treated by him.
So, be sure that your treatment lines up with Burrascano. If you don't think it does, you can discuss that with folks on this board.
If you want to try another doctor eventually, we can point you to the best doctors. I understand from talking with many lyme patients around Philly that we have better doctors in the Maryland/D.C. area. Many eventually come here for their treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I had a holter monitor in January and it did show some PVCs (before I knew I had Lyme and co's). I realize today that every time I feel like I am "falling" it's a PVC. I have a call into my Dr.
As for Lyme I do believe I have it. I have had positive bands. Most recently band 18 and 41.
The Biaxin and Riframpin are supposed to cover both Bartonella and Lyme. It's only my first full month of treatment it just scares me when I have the PVCs about once every 2-3 minutes and today I was very dizzy with any exertion.
(breaking up the post for easier reading for many here)
[ 12-22-2016, 07:18 PM: Message edited by: Robin123 ]
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Make sure you are drinking enough AND replacing electrolytes and minerals. These will keep your body rehydrated and prevent many of the symptoms you associate with "POTS". You can have these symptoms when dehydrated or lacking these essential nutrients in the body.
Posts: 5237 | From here | Registered: Nov 2007
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I agree with others about taking magnesium (just not oxide, it's the least absorbent). It has helped a lot with my heart issues in the past.
Posts: 74 | From Lawrenceville, NJ | Registered: Dec 2016
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posted
Welcome Don! You are in a good place with many wonderful people!!! I think we are all impatient to get better. I wish we could all be better by the holidays... I've had many people tell me to be patient and the turtle win this race. <sigh>
I take magnesium oxide most of time, because I have constipation issues, so it helps keep things moving, If I don't have those issues, I take Mg-zyme from Biotics research. It works and doesn't bother my stomach.
Good luck.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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posted
I had all of that my first time around and it fully resolved with Babesia treatment.
Posts: 184 | From CT | Registered: Aug 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I like Mag-Tab SR (sustained release) by Niche. This is the mag that Dr. Burrascano recommends.
I buy it on line. It releases over a 12 hour period. It has never affected my bowels. I take 3 per day.
See this quote:
MAGNESIUM (required) Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition.
The best source is magnesium L-lactate dehydrate (“Mag-tab SR”, sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart).
DO NOT rely on “cal-mag”, calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea." (p. 28)
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