posted
Hi, I need help. March 4, 2011 I had a horrible fever all day (103) and then the next day my head went dizzy and I had vertigo and I felt like I was drugged up.
I went to the er and the said I was probably dehydrated and that was it. My head has not been the same since...It has been over a year.
I am constantly spinning, even when I close my eyes, and things even look weird. I had many other symptoms (confusion, blurry vision, muscle pains etc)and most have gone away with lyme treatment.
Ive had so many tests...ct scan, mri, eeg, x ray of sinus...numerous blood tests. I do have Hashimotos, but I dont think thats causing it since my thyroid tests were normal when i first got sick.
Am I missing something? I've seen 16 doctors and no one can explain this craziness in my head. My lyme doc said it could be lyme but he's just guessing.
I've treated with doxy, ceftin, mino, pulsed flagyl for 8 months and now off for 30 days to do a urine test through Igenex. And my doc sid we'll go from there.
I'm wondering if the Lyme caused permanent damage?
posted
Do you know if you have been treated for co-infections?
I have the same symptoms as you and my Doctor is treating me for Bart right now. Sounds like maybe you have that.
Posts: 486 | From USA | Registered: Jan 2012
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Jamers
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posted
Did u treat Babesia? Sounds a lot like my Babesia symptoms.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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nefferdun
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posted
I agree it sounds like babesia. It causes vertigo, ataxia (walking side to side like a drunk) and a spacey feeling described as "walking off the mountain top into the clouds". It is difficult to think clearly. You are very forgetful, hard to follow a train of thought. I can also cause depression (including lack of motivation) and hot flashes.
Nothing you have taken addresses babesia and it is very common. In fact, in some areas, babesia is more common than borellia. You need anti-malarial drugs to attack it - mepron or malarone.
-------------------- 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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Jamers
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posted
I agree with nefferdun! Also, A good Lyme literate doctor will treat for coinfections regardless of lab results. It's very unlikely you only have Borrelia. Babesia and Bart are usually present.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
Thanks so much for all the info! And yes I'm very forgetful and have hot flashes.
I don't know if my doc is ILADS educated....he has a practice dedicated only to Lyme.
And Keebler, I saw my neurologist about 5 times and he didnt do much....just sent me for more tests and tell me everything came back normal...just like all the other doctors!
I see my doc in a couple weeks so I will insist he treats me for co infections.
-------------------- JLS Posts: 27 | From trenton, nj | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- Too many neurologists actually know very little about the inner ear and they also do not have the kinds of tests for that in their offices.
It would take a neurotologist (neuro + otologist) and special tests where your body is challenged with various kinds of stimuli to determine specific vestibular diagnoses.
Now, lyme & TBD can cause many of these but not always or the infections may not be the only cause.
And, if it is caused by crystals loosening in your inner ear, the EPLEY MANEUVER can help immediately. That would be called BPV, benign positional vertigo.
My guess is that it's the TBD effect on the vestibular system - and on the BRAIN's balance center, or hypoperfusion in the brain, or a certain kind of low blood pressure, etc.
These are discussed in the Tinnitus thread.
However, if BPV could also be happening and, if so, this maneuver can lighten the load.
MEDICINES can also cause trouble for the inner ear but there are some things to help offset that.
There are so many variable with the vestibular system. Ask your LLMD if they think you might need to see an inner ear expert.
Ginger capsules and magnesium are also helpful. Details in the tinnitus thread. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- jamie,
It's hard to know if your doctor is ILADS educated or not.
If you've been seeing them for 10 months and they have not mentioned co-infections, probably not. Or maybe they want to treat lyme first. Ask if he or she is familiar with ILADS. That's a start.
I see from your previous posts that you did see an ENT early on in this and that was not much help. Well, they are not as advanced in training as a neurotologist, however, it would seem a good ENT would at least have sent you to one had they felt the need.
Many ENTs, and neurotologist are not lyme-educated, though.
HAIR SALON?
I see that you are a hair stylist. If still working (or even if not), exposure to the chemicals in personal care products can do a number on a person with lyme.
If you notice feeling worse around such chemicals, that would be clue, too.
Still, it's important that everyone with inner ear symptoms try to go scent & chemical free at home and work, in the car, wherever they go. The inner ear detects chemicals & scents before any other body system.
I know how hard this dizzy stuff is, it's been a huge part of my life -- so I do hope your doctor is truly a LLMD and that the detail in the vestibular thread will help.
Is your doctor guiding you with:
LIVER SUPPORT &
ADRENAL SUPPORT?
Should be. Both are absolutely vital to help your vestibular system.
Fully addressing infections - and parasites - and adding in support measures has helped many. -
[ 06-24-2012, 12:44 PM: Message edited by: Keebler ]
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Keebler
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(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks so much Keebler. I'm going to make appts to see a neurologist and an ENT. At least now I feel a little bit more educated as to what I should be asking about when I'm there.
I've been seeing my Lyme doc since Dec and I feel like he has helped a lot but I'm obviously not completely better. He mentioned milk thistle for liver support but I haven't started taking it.
I used to take drenatrophin for adrenal support when i was seeing a holistic doc but I stopped that. I felt like i had hyperthyroid symptoms when i took it.
Oh and Yes I still work full time as a hair stylist and surprisingly I feel the best when I am working. I am moving around so much so the dizziness isn't as bad. Its when i'm sitting, focusing on something, or shopping....thats when i feel like everything (including the gound) is moving. And I get such bad headaches.
I def think it's an ear problem...I have so much pressure in my ears and my temples and my ears constantly crackle and pop. Whether its Bart, Babesia, or a Vestibular disorder...at least I have something to go on now. Thanks!
-------------------- JLS Posts: 27 | From trenton, nj | Registered: Aug 2011
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Keebler
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posted
- It is best to find specialists who are ILADS educated and lyme literate. You've been to neurologist and an ENT. Chances are walking in those same steps - with the same level of doctor - will just take you in circles.
Ask your LLMD for names of LL experts - but, after giving this more thought, I'm editing to add that until the liver issue is addressed, I'm not sure anyone can help you.
Since your doctor has been treating long-term, and the fact he recommend Milk Thistle does impart a certain level of expertise.
Treatment can take years so it's not surprising that you may not see great leaps in improvement yet -- however even all LLMD don't have the full scope of assessment and treatment plans to cover other TBDs or other chronic stealth infection.
While not everything is lyme/TBD, lyme/TBD is so unique and changes so very much about a person and about how they tolerate certain other treatments, that
IMO, it can be a huge waste of time, energy and money to see any specialist who does not at least have a basic knowledge of TBD and is not going to discount even the notion of chronic lyme.
Find out if your lyme doctor is a true LLMD. You must have this knowledge. Now, each has their own way to treat each person but they MUST have the research knowledge such as that presented at ILADS conferences and on their website.
You need to avoid STEROIDS. Many regular ENTs prescribe steroids for inner ear symptoms.
A LL ENT would know better.
Most neurologist have no clue how lyme/TBD affect the balance centers of the ears & brain. You need one who has that knowledge but who can also look at all possibilities.
Back to liver protection. If you are not protecting your liver, your ears have very little chance. Please read the liver support detail in the Tinnitus thread.
Milk Thistle is just a start. Without it or other similar measures, it's not at all surprising that you have the vertigo and drugged feeling.
Lyme is toxic. Treatment can be toxic. The only way to offset that is with LIVER SUPPORT, certain other "detox" methods that should be gentle but clearly help the body be able to clear out toxins.
Before you see anyone else, you will likely benefit from serious attention to liver support.
Perhaps you could find a LL ND to help you with that. The links in the Tinnitus thread can guide you.
Especially, working in a hair salon, there is great concern regarding toxicity issues. And ways to minimize the risks.
------
I wonder why did you not take the Milk Thistle that your LLMD recommended? Did you try it? Do you need a different brand? A less expensive brand that would still be pure quality?
I just cannot possible emphasize enough the importance of tending to your liver. Without that, very few stand any kind of chance of improvement.
The symptoms you describe are just shouting: toxicity! Help! Send Liver Support.
It can make all the difference in the world. So, then, what is it that you need to incorporate that into your protocol?
Do you need brand recommendations? See the Tinnitus thread, 3/4 of the way down, for liver support links.
If you have more questions, many here are very familiar the the tender care of the liver. -
[ 06-24-2012, 04:45 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I was taking bur bur detox twice a day while on abx. to help with herx and my doc said it would help with the liver. I guess because my liver enzymes were always normal I didnt think I needed to take anything else.
What brand of milk thistle would you recommend?
-------------------- JLS Posts: 27 | From trenton, nj | Registered: Aug 2011
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posted
Jamie- What you are describing was me to a T. Trust me when i say you have babesia 100%. I wish I could find some of my old posts. You would be astonished to read them as what you are writting is exactly what I wrote. Please pm me if you have questions. Get well soon
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Keebler
Honored Contributor (25K+ posts)
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posted
- It is an excellent point to consider Babesia and Bartonella, too. (See the "Diagnosis" thread posted above as a guide for your next LLMDs appointment).
With babesia treatment, milk thistle needs to be taken hours away from mepron (if that is used for babesia). Some LLMDs say avoid it but many say just be sure it's timed away from the Rx.
Liver enzyme tests are helpful but can't show the whole picture.
Burbur is very good, too. When you said your doctor suggested milk thistle but you did not take it, I did not know that you had taken Burbur instead.
Trying to find supplements without magnesium stearate or fillers. They may cost a bit more but worth it. Just one brand of Milk Thistle to consider, this is a very good company:
Bio-Silymarin PLUS� is 100% American manufactured, 100% pure and contains no fillers or other additives. . .
This product contains NO ingredients from China. However the raw Milk Thistle extract we use is grown organically and imported from Germany. -
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Sammi
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posted
I agree with those who think this is Babs. The tests are not completely reliable. I suggest talking with your doctor about treating Babs.
If you don't think your doctor is good with co-infections, maybe you should get another opinion.
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Keebler
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posted
- TF, a poster here, is an excellent example of someone who was treated for years with a so-so LLMD.
Once she found a REALLY good LLMD, I think she got to a very strong and steady remission in one year's time.
You might check with those at your lyme support group to gather a range of experiences with your current LLMD and others in the area.
Also, do not be shy about asking your LLMD to outline his thoughts for how your treatment will progress and what coinfections may be considered, etc.
The air in the hair salon keeps coming back to me. I hope that is well ventilated and that you avoid breathing in chemicals as much as possible.
Oh, about the adrenal support. What you were taking was a glandular - I did horrible with that, too.
Herbal support is much easier to tolerate. That is also in the Tinnitus thread above.
Take care.
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I had it come on quickly and have been dizzy 24 hours a day with head pressure for five years now. It hasn't gone away for one second. I've treated everything and seen everybody. I don't want to scare you, just letting you know i have that feeling. I hope you get better. Keep us updated if anything works.
Posts: 105 | From east | Registered: Nov 2008
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posted
I see my doc on the 16th and I will definitely asked to be treated for the co infections.
Im gonna go through all the threads you sent Keebler and really push for answers. It gets so frustarting and depressing...and sometimes I feel like I just need to deal with it. There's nothing worse in this world than feeling hopeless.
My friends and family don't understand....I put on a happy face and act like there's nothing wrong....they think I'm crazy when I descibe it to them. I just want my life back.
Mr Al...I know what you're going through...doctors don't get it when I say its CONSTANT and it never goes away. They ask "Are you dizzy now?" I feel like no one listens! I hope you find relief. and I will post when I find something that works.
-------------------- JLS Posts: 27 | From trenton, nj | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- A neurotologist (and most ENTs) WILL understand chronic vertigo and dizziness. There are certain tests they can do that document it - regardless of the cause.
Again, best if that neurotologist is ILADS educated and LL.
The doctors that don't understand how vestibular disorders can permeate EVERYthing about one's life - well, stay away from them. You don't need them.
I had to stop trying to make regular doctors be the kind of doctors they are kicking and screaming to NOT be. It's like taking Volvo to a Chevy mechanic. They can't help. Lyme changes everything.
You might ask your LLMD for TILT TABLE TEST, too. Perhaps a SPECT scan to assess hypoperfusion.
But all that is in the Tinnitus Thread - so much more is there. -
[ 06-24-2012, 11:27 PM: Message edited by: Keebler ]
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Jamers
Frequent Contributor (1K+ posts)
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posted
I saw a neurologist for my vertigo before I was diagnosed. They couldn't figure out what it was still...because the cause was Lyme and co. I was put on a steroidal nasal spray that helped a lot but we are not supposed to take steroids. Acupuncture was the best for my vertigo. A few needles in my ear and 70% of my vertigo was gone!!!
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Jamers,
A neurologist is not trained in matters of the inner ear / vestibular system. Most know nothing about the range of vestibular disorders.
Sad but true.
What is needed: a neurotologist, one with education and expertise in both neurology and the vestibular disorders. It requires two years of additional training.
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