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» LymeNet Flash » Questions and Discussion » Medical Questions » update from appt. with lyme doctor

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Author Topic: update from appt. with lyme doctor
lindadanis
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Saw my lyme doctor today, told her I was having severe memory issues, she gave me a short cognitive test and I failed it. She said to go see a neurologist and see what he has to say. I thought this was lyme? She said I came up positive for band 34 through a local lab, not Igenex and that she wanted to run all lyme and co infection testing in September when I go on Medicare.

I guess Igenex is now accepting Medicare. news to me.

She did not put me on any other medicine except stay on the ABABS. She did tell me about lithium orotate 5 mg. once four times a day but I had to ask her about it.

I am at wits end. I don't know what I have. I came up positive for babesia duncani on Igenex with a number of 40, active infection.

Am I going nuts or do I have lyme disease?

Thanks for any input., appreciate it a lot.

Posts: 468 | From boston, ma | Registered: Feb 2018  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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It's SO frustrating to be dying on the inside and testing comes out normal. You must listen to your body.

Do we really need a CDC diagnosis ?
NO.
Our goal is to get treated. Plain and simple.

According to Dr H, Dr C and Dr D ( all world renowned LLMD's) " If a patient clinically shows suspicious symptoms of Borreliosis and has just ONE Borreliosis Assiciated antibody band on their Lyme test, you may assume they have Borreliosis ( Lyme).

These specific bands are ;
18,23-25,28,30,31,34,39,58,66,93

Band 34 is specific for Borreliosis.
It is an outer surface protein B (OspB)

Treat the patient.

You are not going nuts.

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k84
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Your Babesia Duncaci is in maybe active infection range. I mangaged to throw a 1280 (yes, seriously)
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lindadanis
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I understand that. Mine was just above normal high. I thought band 34 was definitely lyme but she said without the pcr igenex test, she couldn't tell if it was active or not. What is lithium ornate? she told me to get it 5 mg. four times a day. I am sick and I know it. My mental capacity is horrible, memory so bad that sometimes I wonder where I am going when I drive. Could this be something else and we are missing it?
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Lyme248
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Lithium orotate is supposed to help memory loss.

You probably still do have Lyme, and your memory loss could be from that, but I suppose it's always best to get checked out by a neurologist, to make sure something else isn't going on.

--------------------
chronic Lyme/Bartonella

Inside every sick person is a well person waiting to be freed

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Lymetoo
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The memory loss could indeed be from Lyme.

Did you think to ask her about candida?

Start slowly on the lithium.

Yes, I have heard that Igenex is hooked up with Medicare. Good news!

--------------------
--Lymetutu--
Opinions, not medical advice!

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lindadanis
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I forgot to ask her about candida because she was behind in the first place and it was somewhat a rushed appointment. I have bands 58, 41 and 34 on a local lab lyme test. She said band 34 is the only one that pertains to lyme. I read the above thread and according to that, I have two bands positive to lyme. Am I correct? I am more confused leaving there than before I walked in her door.

She kept me on ABABS and wants me to get up to 40 drops per day. I am doing 20 drops per day. Why do I need additional testing to confirm I have active lyme and babesia? I don't understand it and I thought brain/memory issues went along with lyme. Now I have to wait another month to get the testing done through Igenex and then another three weeks before I see her to see these results. In the meantime, I am only on ababs. very confused and depressed.

Thanks for the replies. I appreciate them very much. She wants me to start off with lithium ornate 5 milligrams four times a day. Does this seem right?

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Lymetoo
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YES, band 58 is specific to Lyme.

(but is it an active infection?)

https://www.healthline.com/nutrition/candida-symptoms-treatment#section9

I don't know about lithium dosing ..but try ONE and see if your body accepts it. We patients are very sensitive to things.

--------------------
--Lymetutu--
Opinions, not medical advice!

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lindadanis
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how do we know what is active and what is not? This is the first time she ever mentioned active or not so I am very confused and worried that not being on any abx that I will get worse instead of better.
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MannaMe
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Start out with one lithium orotate. My husband is taking 1 per day. It was to help with the anxiety.

Can you get some A-L Complex to start treating Lyme? (same brand as the A Bab)

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lindadanis
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one pill per day, how many milligrams because she told me to take a 5 milligram pill four times a day. I cannot get a-l complex, it has to be given by a llmd I believe. Did this lithium help him with his anxiety and also did he have any side affects
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lindadanis
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I increased my ABABs last night by two drops and today I am awful. I cannot catch a break from feeling terrible everday. I also took some calm companion, which is a magnesium drink and I woke up with terrible stomach issues and pains in my stomach. What am I doing wrong? Why don't I ever feel better? The dizziness/boat feeling is so bad today I don't think I can drive. I don't understand why she doesn't believe this is all lyme and babesia issues., and is sending me to the ear doctor again to do a vnt test. Getting so frustrated.
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Lyme248
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It sounds like the magnesium bothered your stomach. Magnesium used to bother my stomach sometimes too. The rocking boat feeling, I would say is almost definitely babesia.

I found a website once where you can buy A-L Complex. I'll try to find it again. It has a some artemesia annua in it.

But I would really recommend trying arteminisin (I know I've said this before). It really helped my symptoms.

Buy Byron white formulas

Another place to buy Byron White formulas

--------------------
chronic Lyme/Bartonella

Inside every sick person is a well person waiting to be freed

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lindadanis
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Then why does my llmd tell me that this rocking on the boat feeling is not common for lyme or babesia? I just don't get it. Thank you for responding to me. I will go on this website and see if I can order it. what is a-l complex?
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Keebler
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Q: " . . . Then why does my llmd tell me that this rocking on the boat feeling is not common for lyme or babesia? . . . ."(end quote)


As I recall they are a "NP" and while may be somewhat lyme aware, yet it seems they are not really lyme literate.

Some NPs have become very much LL yet yours seems to have not really "earned" the LL distinction.

Their dismissal of this, their not being aware of this really proves they are not as educated as you would require.

Of course, they may be the best you can obtain at this point in time but that will put more responsibility on your learning more to know how to employ their services for what they know and when you have to rely on good knowledge from other ILADS kinds of experts in books, lectures, etc.

Certainly they have not completed the ILADS Physician Training course or they would know this most basic symptom.

Still, it could also be caused by inner / middle ear because of lyme / babesia / TBD or some other reason.

A good neurotologist should be consulted. Even most ENTs are not as educated in the inner / middle dysfunction and there are very special tests / assessments that a NEUROTOLOGIST will use.

They are vestibular experts with addtional neurology training so they look at both the vestibular system (inner / middle ear) and the brain function that connect.

Though, not a neurologist, they are often clueless about the vestibular system.
-

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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Vertigo / Balance, Hearing with compiled links - including HYPERACUSIS & SCD - Superior canal dehiscence

and what we can do to help ourselves.
-

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Keebler
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Also, if I recall correctly, you are still weaning down off a drug that can cause this kind of symptom as a side effect. That's to be considered, too. All kinds of mood drugs can clobber the vestibular system and create various kinds of vertigo.

In the meantime, ginger capsules might help. See links in thread above for that.
-

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lindadanis
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Thanks Keebler. Yes I was trying to wean down off of Ativan and hit a brick wall so currently I am on the same dose although I do not think it helps my anxiety at all. This shortness of breath, not feeling like I can breath, is horrible. She mentioned going on lithium oritate, not sure I spelled that right. What is this and what does it do?
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lindadanis
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She told me to see the neurologist Keebler, is this the same as what you are mentioning?
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Keebler
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No. A neurologiist is not at all the same as a neurotologist (neuro-otologist). Not at all.
-

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Lymetoo
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Lithium orotate

https://www.verywellmind.com/the-benefits-of-lithium-orotate-89475

--------------------
--Lymetutu--
Opinions, not medical advice!

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map1131
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Keebler, I do believe Linda dropped the NP and went back to the LLMD that helped her daughter years ago.

I find it shameful that a LLMD would not educate during a visit, that should be nothing less than one hour with the patient.

LLMDs should send patients home with many write-ups on treatment protocols and everything the patient should be doing at home to help themselves improve.

Some LLMDs have not changed their treatment protocol in 20 years and that's a darn shame, because this beast has become more powerful.

Don't be afraid of lithium orotate. It's a mineral that can be very helpful for the brain.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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lindadanis
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I am seeing the same doctor that treated my daughter, however after this visit, I got the feeling she is not convinced I have lyme or babesia. I have bands 34, 41 and 58 positive but she wants to rerun the pcr test on igenex next month which I know is like finding a needle in the haystack. She also wants to see if my babesia number jumped or went down since it was 40 last December. I haven't been on much treatment so not sure why she is doing all this. I have read a lot of articles about babesia and it says you have rocking on a boat sensation which is what I have constantly so I don't understand why I was sent to for this next week. I am so confused. She did not mention lithium orotate to me, I brought it up to her. Thinking maybe I made another mistake giving up the NP., now don't know what to do. If this shortness of breath would just leave for one day, I would be so much better off and this crazy head crap. Feel so discouraged to say the least.
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Lymetoo
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I don't understand why she doesn't get that. Rocking boat and shortness of breath are major symptoms of babesia.

She should also be talking to you about protecting yourself from yeast.

--------------------
--Lymetutu--
Opinions, not medical advice!

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lindadanis
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Lymetoo. You are correct, everything I read says babesia causes shortness of breath and rocking boat feeling which I have every single day along with severe headaches. Why is she not acknowledging this? why is she sending me to specialist upon specialist and now I have to do with two hour VNG balance test Monday that the ear nose and throat doctor ordered. Seems like such a waste of time. She only has me on ababs until end of September as she wants to run the blood work again through igenex in September. So now again, no medicine except ababs. I am so confused and feel horrible.
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Lymetoo
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Maybe you could try calling her office to learn more? Perhaps she is thinking you are already herxing too hard to give you anything else.

--------------------
--Lymetutu--
Opinions, not medical advice!

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