posted
First I want to thank everyone who has ever posted to me in the past several months. It has been very helpful. My llmd told me to go on lithium orotate 5mg. four times a day. I did a search on this and there is very conflicting information whether or not this helps anxiety, etc.
My anxiety comes from this crazy rocking feeling in my head, like being on a boat, and from what I read, this is a classic babesia symptom. Am I correct? My llmd told me to go get a balance test which I did yesterday and will not have the results for at least a week. I did horrible throughout this two hour test and actually couldn't finish it but did most of it.
I feel like the lithium orotate is not going to do anything for this balance issue, am I correct?
Posts: 468 | From boston, ma | Registered: Feb 2018
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
lindadanis
Your symptoms are widely common here at Lyment.
I cannot comment on babesia or lithium orotate. Maybe another member might chime in.
I can comment on vertigo and balance problems. It was also what caused my severe anxiety. I went all the way to the Cleveland Clinic for them to diagnosis me vertigo. Duh. . .
I went to physical therapy for 6 weeks. They preformed the Epley Manneuver to remove crystals from inner ear. Did not work.
I was prescriped typical vertigo meds, meclizine (did not work), Scopolamine patches to put behind ear ( did not work and burnt a hole in my skin).
After 6 months of Lyme treatment, my vertigo and anxiety were decreased by 50%. Presently they are totally gone except for several flares. It will get better but it takes time and working your treatment plan for all to come together.
Let us know what they plan for treatment when you get your test results back. We will help anyway we can.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
thank you so much. My daughter went through this whole ordeal many years ago when fighting lyme. She went through every test you mentioned and she came up negative as well. I know its lyme and babesia. I will not have these results for about a week but thank you so much for trying to help. It is huge to know that I came come home here and ask a lot of questions and great people try to help you. Helped me years ago when my daughter was sick, now I am the patient and its so much harder being the patient than the caregiver.
Posts: 468 | From boston, ma | Registered: Feb 2018
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quote:Originally posted by Bartenderbonnie: lindadanis
Your symptoms are widely common here at Lyment.
I cannot comment on babesia or lithium orotate. Maybe another member might chime in.
I can comment on vertigo and balance problems. It was also what caused my severe anxiety. I went all the way to the Cleveland Clinic for them to diagnosis me vertigo. Duh. . .
I went to physical therapy for 6 weeks. They preformed the Epley Manneuver to remove crystals from inner ear. Did not work.
I was prescriped typical vertigo meds, meclizine (did not work), Scopolamine patches to put behind ear ( did not work and burnt a hole in my skin).
After 6 months of Lyme treatment, my vertigo and anxiety were decreased by 50%. Presently they are totally gone except for several flares. It will get better but it takes time and working your treatment plan for all to come together.
Let us know what they plan for treatment when you get your test results back. We will help anyway we can.
Can you tell me if your balance when walking has resolved? I was just diagnosed clinically 2 wks ago after no MD after 18 months; including 3 neurologist, could figure out what was wrong with me. My walking and balance are my biggest concern and I just did blood work yesterday sent to Igenex so wont have results for a few weeks but I have been put on Clarithromyci AND Cefuroxime Axetil. I am trying to be hopeful that it will improve with time and patience. Your experience will be helpful to me.
Posts: 36 | From NH | Registered: Nov 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Both a symptom of lyme, other tick-borne &/or chronic stealth infections . ..
&/or of certain Rx, OTC, etc.
&/or internal bone or tissue structure issues with the vestibular architecture (inner / middle ear mechanisms)
[Even most ENTs are not trained in all this. A NEUROTOLOGIST - "neuro - otologist" is required and beyond that, even on who is LL best. Few and far between.
Yet - there are some specific kinds of vertigo that are easy to address: IF caused by displaced crystals in your ears. It's a kind of benign POSITIONAL VERTIGO and the EPLEY maneuver can help. It will not help all kinds, though.
Scan the Tinnitus thread below for some posts on that.
Most LLMDs are familiar with the vestibular issues.
Be sure your home & car are scent free. Shampoos, soaps, lotions should be free of all harsh chemicals whether the scent bothers you or not.
Check any gas lines in your home. Do a fresh air flush - full home - at least once a day.
The vestibular system is the very first to send alarm signals when the body is facing chemicals that are too strong for it.
Check ALL RX as many of these can have side-effects of various vestibular symptoms.
And although some of the Rx required for lyme are ototoxic, (and yet lyme, infections can also cause damage so must be addressed in as assertive & direct manner)
it's still vital to sort out and get rid of all substances that might be ototoxic and have ONLY the very most essential ones
and also along with key liver / kidney support. But that is not a ticket to avoiding hearing or vestibular damage. It just might help. Careful assessment in Rx and support helps.
Lying at a 30% angle with head higher than legs is the best position for the inner ear. But elevate from the hips, the entire torso, never just the head / neck.
You can compare and contrast many approaches here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- linda,
it saddens me to see you describe this as a "crazy" event / symptom as there are various perfectly logical explanations for what is going on.
It's science & physiology & body chemistry / bone & tissue architecture, not crazy. We've all had that term tossed around and I just hope you know this is logical.
Very disarming and disconcerting, though? Absolutely. And these kinds of balance issues can drive anyone to the ends of the earth in all kinds of ways. It can tank one's mood and outlook. That, too, is logical.
you say: "I feel like the lithium orotate is not going to do anything for this balance issue, am I correct?"
No way to know. Try a very low dose at a time when you will not be going out, walking near traffic or driving. Actually, best not to drive with any kind of inner ear symptoms, anyway. Sigh.
Lithium orotate did not work for me at all - I took it to help reduce seizures and (like all seizure drugs for me) it sort of turned my legs to Jell-O and made me more dizzy.
However, I also have bone issues in my inner / middle ear loop-de-loop structure and am very sensitive to most agents that sedate in any way.
. Its use is primarly to calm down the overactive NMDA nerve pulses. Some find it excellent to calm anxiety. It might help.
One concern: mixing with all the other stuff you are taking.
A LLMD or LL ND should be guiding you and from what I gather, you do not have that at this time so study lots and tread slowly with changes.
And, if I recall correctly you are still weaning off a very strong anti anxiety Rx that can cause all these balance issues, too.
How is that weaning off going? If the support is not balanced as you go down slowly, it can be too harsh a ride.
Magnesium should be tried first, up to 2,000 mg a day in divided dose - best form for your body. Too many do not take enough or keep it steady.
and GINGER CAPSULES - keeping the dose regular.
Good brand: Oregon's Wild Harvest -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- SDAR,
Welcome. Sorry for what brings you here, of course.
Be sure you have liver support on board with those Rx. All the links apply to linda's posts and also to yours.
Remember that for many with lyme, coinfections who get assertive and direct treatment for the infections the vestibular issues improve. Still liver support is a must to help protect ears / balance.
Be sure coinfections are carefully assessed by an experienced LLMD / LL ND. They need to be treated differently.
Babesia seemed to cause me more trouble with balance but it can be hard to distinguish when so many are on in the mix at the same time. Bartonella, too, can really turn things topsy turvy..
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I had severe balance issues for years, in spite of off and on again treatment (due to constant doctor and treatment issues). I thought that it was permanent damage, because it had been so severe for so long.
I couldn't walk much at all a lot of the time, or would constantly trip and stumble over nothing.
After I went back on treatment again early this year, especially targeting Babesia, the severe balance issue and constantly tripping got hugely better----much to my amazement. It's not all gone, but I'm hardly finished treating. (In my case, I'll probably never be through, but that's another issue).
I've taken lithium orotate for a long time, and it's very helpful. However, not for balance issues, but more helpful for anxiety and insomnia. It is also reportedly good as a neuroprotectant.
[Just saw that this is a thread from months ago. I hope that Linda sees it].
Posts: 3771 | From around | Registered: Mar 2008
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posted
thank you for replying. I am still having it, terrible balance issues and horrible anxiety. My current llmd told me she isn't even sure if I have "active lyme" because my past igenex testing showed positive igm for bands 31 and 41. she had me on doxy 200mg. day. I am also taking plaquinal for RA and I still don't feel good. I am getting worse and so scared. What is lithium orotate and where do I get it? Is it for anxiety? I currently take Ativan for the anxiety but its not helping much., now they want to switch me to clonopin. any help would be greatly appreciated. I did test positive for babesia duncani, did two months on mepron and recent test showed it was in normal levels, therefore, she took me off mepron too.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Bartenderbonnie
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posted
SDAR . . . Live free or die state.
Yes, you can get better. And you are in the right mindset. . . It takes time and patience. So happy you were diagnosised clinally and were able to start treatment immediately. All LLMD's know Lyme attacks the cranial nerves VII and VIII. which is what causes severe balance issues. Viruses in our bodies that become activated during Lyme also can do this.
At my 6 month mark, I was feeling 50% better. Balance, gait, anxiety, tinnitis much improved. The first 3 months of treatment very hard. AWLFUL. Plow through if able. DETOX everyday. Lots of clean lemon water, Ebsom salt baths, sauna, milk thistle, and rest, rest, rest. Fight for your health. It's SO worth it.
If I had to go through that horrible time again, I would remind myself to RELAX. Don't think about how non-productive you are laying in bed 20 hours a day, don't sweat the small stuff (clean house, taking a shower, missing special occasions, ect.)
Keep your eye on "THE BIG PICTURE." Getting your health and life back. You can do this. Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
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Member # 49177
posted
Linda
I think a new LLMD would make a world of a difference in your lack of progress. I so want you to start feeling better. 💚
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I had a lot of brain disfunction so I tried low dose lithium orotate. The brand I used was Pure at 5 mg. I only took it as needed but it was very helpful in calming my brain.
I also had severe ear and balance issues, undoubtedly related to babesia. After getting over babs by using the Buhner protocol for it, things improved slowly. I'm now on a Buhner Mycoplasma pneumonia protocol an I have no question that that was and still is part of the problem but to a lesser degree than babesia. The side of my head around my right ear is swollen and that correlates to ear issues. I continue to improve and am 5 months into a yearlong protocol.
Good luck.
Posts: 705 | From WA state | Registered: Jul 2011
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quote:Originally posted by Bartenderbonnie: SDAR . . . Live free or die state.
Yes, you can get better. And you are in the right mindset. . . It takes time and patience. So happy you were diagnosised clinally and were able to start treatment immediately. All LLMD's know Lyme attacks the cranial nerves VII and VIII. which is what causes severe balance issues. Viruses in our bodies that become activated during Lyme also can do this.
At my 6 month mark, I was feeling 50% better. Balance, gait, anxiety, tinnitis much improved. The first 3 months of treatment very hard. AWLFUL. Plow through if able. DETOX everyday. Lots of clean lemon water, Ebsom salt baths, sauna, milk thistle, and rest, rest, rest. Fight for your health. It's SO worth it.
If I had to go through that horrible time again, I would remind myself to RELAX. Don't think about how non-productive you are laying in bed 20 hours a day, don't sweat the small stuff (clean house, taking a shower, missing special occasions, ect.)
Keep your eye on "THE BIG PICTURE." Getting your health and life back. You can do this.
I am just today starting Liposomal Glutathione. Can you offer and personal knowledge about this? I seem to be more concerned about the treatment than the symptoms. I read so many stories of the seizures, severe worsening of symptoms and ER visits that I sometimes have to stop reading and remember everyones journey is different and have faith but keep a balance of important facts vs bad experiences with treatment. I have to say I have a very realistic fear of this horrible disease.
Posts: 36 | From NH | Registered: Nov 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- SDAR,
It's not necessary to copy the full post to which you want to reply. And more people will be able to read what you write if add some white space "breathing room for the eyes". See how most others post with no more than usually 4 lines together.
Many here just cannot read text that is so crowded. And the more who can read, the more who can reply.
Now, your fear is understandable and yes, warranted. However, what seems to help many is to shift that fear to action which is mostly learning more and - hey - maybe learning to be a better cook.
You may wonder why I say that but nutrition is the number one way you can help your own body. It's not all about medicine and, yet, well - food is medicine.
First things first, be sure your doctor is a good and true LLMD - ILADS educated or "minded" (there are a few who may not be ILADS member yet know all that been presented at their conference and through authors since day one.
You might start here to compare the plan your doctor has for you against this basic template:
LymeDisease. org -- an excellent resource. Explore all their tabs to learn more and for support. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
search the work of master herbalist Stephen H. Buhner for not just herbal choices but he also explains so very much about how each infection works in the body. Even if you go all Rx, there is so much to learn from him. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I cannot read past the first line of you lastest post but you do say:
" starting Liposomal Glutathione"
Just be certain of the timing of this in relation to Rx you take if there is a push just after taking it for the liver to work more efficently - too tired not to check sp? -
The previous Liver support Links explain. Remember that "detox" is not to be an event or a big push but consistent support.
Do take this all seriously but not let it kidnap you. Many have likened being faced with this at the start as being dropped into a graduate program in science a week before finals and not having even taken the prereq. undergrad course work.
So, you don't have to learn it all at once.
1. Have a doctor whom you truly trust is experienced and successful with others who have various tick borne diseases
2. TLC Take measures to lovingly tend to your foods, sleep, environment, altered friendships and family relationships
and protect the activities you must do and at least part of those enjoy as well. You just may have to alter nearly everything at least a bit so it works with you.
Prioritize rest - and all energy expenditures -- as well as avoiding sensory "hits" from big box stores, etc.
Protect your ears from noise, too. Ears are much more subs. to noise damage from even not that loud of sounds during and after many Rx. -
[ 11-30-2018, 04:32 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
i am sorry I do not know how to use this yet I have just started posting here so helping me understand how to post replies is appreciated.
Keebler I am not sure I understand what you are saying in reference to taking the Liposomal Glutathione?
I was instructed to take it once a day with a meal so I started today and took it while eating lunch along with my probiotic, is that correct?
Posts: 36 | From NH | Registered: Nov 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That sounds fine. The main thing to keep in mind with liver protective herbs / nutrients / substances (such as glutathione and those things that help our liver make more of it such as milk thistle)
is that at the time you take it, many of these kind of give the liver a nudge to ramp up its detoxification mode. Glutathione is a key substance made in the liver (&/or supplemented).
When the liver gets into gear you do not want its action to also sweep out any good Rx that might have also just taken.
Rx needs to be gotten to a therapeutic dose to do its job. So, just be sure the "push" or "nudge" of the liver with supplements is not at the same time as Rx that need a certain level to work. You don't want the Rx to get swept up in the process.
A couple hours both clock directions is best between liver support supplements and key Rx or other antimicrobial actions.
Same with probiotics, not at the same time as antimicrobial Rx (whether antibiotics or Rx to address other kinds of infections).
My ability to compose sentences clearly is hampered. Still, I hope this helps. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by Bartenderbonnie: Linda
I think a new LLMD would make a world of a difference in your lack of progress. I so want you to start feeling better. 💚
Yes, I agree!!
You can look for recommendations on "Find a Doctor, giving states you can travel to in the title. Plus, check your state or local Lyme groups for recommendations.
By the way, in my previous post, I didn't mention (re balance issues) that I have had 7 bad falls in a few years, 3 of them catastrophic!!!
And to think that I danced from when I was 3 and was a professional dancer, did arial and water choreography, and was a competitive swimmer, and on and on. Sigh.
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