posted
Curious if anyone can relate. I woke up with this one morning and still have it almost a year later. It's severe. Also have terrible fatigue, poor balance, and terrible short term memory and attention span.
Positive lyme, babesia and bartonella. Only sick about 5 months before treating. Extensive Lyme and Babesia treatment only getting about 10% better, now on IVIG.
Posts: 306 | From NY | Registered: Sep 2010
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posted
I'll reiterate that this feeling is ALWAYS THERE since I woke up with it. It's not bouts of dizziness, its there literally all the time, worst symptom ever.
Posts: 306 | From NY | Registered: Sep 2010
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posted
Yes.. I have the same thing woozy 24/ 7and it really makes me crazy. I fear driving. Have not been in treatment very long though.
Posts: 129 | From West | Registered: Jun 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Joining in on the "woozy" party.... See my "Feel like I'm going to pass out" post...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That is one of my primary babesia symptoms . It comes and goes for me. It got very bad when I started treatment and then subsided. It is back again now. I really hate it.
Maybe a round of Coartem would help you.
What are you taking for babesia now?
-------------------- 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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posted
My doctor whose a top LLMD believes Babesia is really only a 2-4 month treatment maximum. I have to agree, originally had a positive FISH and 1:160 titer IgM. 6 weeks later titer went down to 1:20, but still positive FISH. I continued to treat for 5 total months so now I am done with Babesia.
Posts: 306 | From NY | Registered: Sep 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I have had this a lot and is almost gone with antiparasitic tx with herbs and salt/c. This is going to sound strange, but wearing a baseball cap helps. I think it has something to do with applying pressure to the head.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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i would suggest not driving at all, ever, when one is dizzy or weak.
I have this too, including the feeling that i'm going to pass out. The only time it feels better is very late at night.
Sometimes homeopathic cocculus or a blend called cocculus compositum can be helpful for the wooziness/nausea and dizziness.
These symptoms started to increase as soon as i started to treat lyme, and i don't use antibiotics. For me it was simply starting gentle herbal treatment.
My sense is that it is a combination of the bugs getting stirred up, the nerves/inner ear getting affected and toxins. Who knows?
Moving very slowly and not asking so much of myself is helping. Lots of slow, deep breaths. I ask for help to walk when i need it.
Because i also have a lot of heat in the torso and head, i use corn bag ice packs all the time. These do help me.
Gael, your posts inspire me ~ thank you ~
ease and peace ~
Posts: 164 | From North America | Registered: Mar 2009
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How many of you suffer from bizarre symptoms that nobody seems to understand? Many thousands of patients, myself included, have at some point been left completely puzzled at the mystery of our unexplained medical conditions. In my earlier article, �Quest for a Diagnosis,� I shared my tortured journey towards my diagnosis of Lyme disease. My story represents a small picture of how frustrating it can be to pinpoint the true cause of a medical problem.
Lacking intricate knowledge of complex emerging diseases such as Lyme disease, many physicians become overwhelmed and baffled, and simply give up. Rather than spend the time to accurately diagnose you, they instead label you with something like chronic fatigue syndrome (CFS). This jumbled diagnosis gets them off the hook, and as a result you are left dumbfounded and bewildered as to what the cause of your symptoms is. In my opinion, many physicians give up easily, and �pass the buck� on a patient without thoroughly investigating the true nature of the patient�s problem.
Before I knew I had Lyme disease, I suffered for years from recurrent spells of lightheadedness and dizziness. �Zombie mode� is how I used to describe the mental fog I walked around with every day. Whenever I stood up after sitting for a while, I got a �head rush,� and felt woozy and off balance. Hot weather, hot showers, and standing in lines often brought about an increase in my symptoms.
I developed very uncomfortable feelings of anxiety and shakiness after my �head rushes.� The dizziness would often get markedly worse after I ate a full meal. This was very odd. I thought the shaky feeling might be stemming from low blood sugar (hypoglycemia). Exercise was impossible due to the exhaustion I experienced afterwards. At times, this post-exertional fatigue would last for 2-3 days. I figured my exhaustion was due to the earlier diagnosis of chronic fatigue syndrome (CFS) my flock of doctors had slapped me with.
Disoriented and exhausted, my mental confusion took on the forms of difficulty in concentrating, slurred speech, and panic attacks. As time went on, I became so weak I could no longer drive my car, and I required assistance with simple tasks. My plethora of doctors decided I had Addison�s disease (another wrong diagnosis) and prescribed steroids for 3 years with no resolution. According to my endocrinologist, my adrenals had shut down for �unexplained reasons.� It was not until I was correctly diagnosed with Lyme disease that the cause of my strange symptoms was discovered.
Being a brilliant researcher, my Lyme Literate Medical Doctor (LLMD) sent me a cardiologist to have a tilt table test. Gently remarking that Lyme patients are �backwards� in nature, my LLMD suspected I might have a form of autonomic dysfunction. A tilt table test is designed to help diagnose neurally mediated hypotension (NMH), also known as vaso-vagal syncope, neurocardiogenic syncope and autonomic dysfunction. The medical terms for fainting and low blood pressure are syncope and hypotension respectively. Tilt table testing is a rather simple concept, but requires supervision by a cardiologist.
I was fortunate to have a very Lyme literate cardiologist administer my test. In fact, before my test began, one of the residents in the room griped that he had never heard of babesiosis, which I listed on my patient history form. My cardiologist gave the resident a look of disappointment while remarking that he should study harder if he wanted to make it in the medical profession. Babesia microti, a piroplasm similar to malaria, is one of the tick-borne diseases that complicated my condition.
My tilt table test began with me lying flat on my back, with blood pressure cuffs on both arms, and heart monitors attached to my chest. Measurements were taken at scheduled intervals as I was transitioned from lying flat into a standing position. To prevent me from fainting, I was secured to the table with safety straps. After being raised to an upright position, and remaining there for several minutes, I was returned to a lying down position. Phase two began with an injection of Isuprel, a drug that simulates a stressful situation, thought to mimic the symptoms I was experiencing. Once the drug took effect, I was again raised to an upright position. My heart rate reached 165, and then suddenly dropped to 65 in one beat, as my blood pressure plummeted from 130/70 to 50/0. I fainted and was out cold until they stopped the test and administered the antidote to the Isuprel. Normal blood pressure is typically 120/70.
It was an exhausting experience, however, this test turned out to be one of the most significant tests and discoveries of my health journey. I had a combined neurocardiogenic and vasopressor response, a double fail. This meant that the Lyme bacteria had inflamed my vagus nerve, which is the major communicator between the heart and brain.
My cardiologist graciously explained that when a healthy person stands up, blood normally pools in the legs due to gravity. To compensate for the lower quantity of blood returning to the heart after standing, the body releases adrenaline. The adrenaline surge makes the heart pump harder and faster, thus allowing the blood to pump quickly back from the extremities to the brain and vital organs.
In neurally mediated hypotension (NMH) there is a miscommunication between the heart and brain. As you stand up, and the heart needs to beat faster, the brain �misfires� and sends out the message that the heart rate should be slowed down, and that the blood vessels in the arms and legs should dilate. More blood is taken away from the central part of the circulation where it is needed, and lightheadedness and syncope (fainting) can result. These symptoms occur because the brain is not getting enough blood. Although frightening, fainting can actually help the patient by returning him/her to a flat position, removing the pooling effect of gravity in the extremities, and allowing more blood to return to the heart.
My cardiologist explained that because I had both low blood pressure and the rapid heart rate (tachycardia), I would need a combination of treatments to get my symptoms under control. He recommended Atenolol, a beta-blocker designed to regulate heart rate. I had what he called �backwards blood pressure� and he explained how beta-blockers are normally used to control high blood pressure (hypertension).
In addition to the beta�blocker, he recommended I take the antidepressant Zoloft, plus the mineralocorticoid Florinef to help regulate my blood pressure. Florinef works by acting on the kidneys to keep increase blood volume, thereby increasing blood pressure. Along with the Atenolol, Zoloft and Florinef, my cardiologist suggested I add more salt to my diet, avoid dairy products, alcohol, and caffeine. He also mentioned how essential it would be for me to drink at least 2 quarts of water per day, and double that amount in warmer weather.
I also learned some basic techniques to help me manage my NMH better. Simple posture, it turns out, had a lot to do with the degree of symptoms I felt. Crossing and elevating my legs would help stop blood pooling in my feet. Using cooler water while showering sitting in a chair would help prevent episodes of NMH brought on by the heat. The bizarre dizziness I experienced after eating was due to the blood moving to my digestive system. Eating smaller, more frequent meals helped resolve that uncomfortable symptom. Using a motorized scooter in the supermarket, or shopping during off hours would help prevent the standing in lines that brought about the blood pooling and anxiety/shakiness. The fainting reflex could be activated whenever I stood upright for a period of time. As my LLMD later explained, the Lyme bacteria were the cause of the NMH, and the cause of the inflammation of my vagus nerve.
Determined to always seek the cause, I was relieved to gain understanding of such a commonly misdiagnosed disorder. Just to be clear, some physicians will talk about NMH as if it is a disease. Actually, it is a functional disorder that clinically indicates something much greater. In my case, in order to treat the NMH, I first had to aggressively treat my Lyme disease with antibiotics. By reducing the inflammation caused by the infection, the symptoms of NMH would, in turn, resolve. The medications and dietary changes I had to make would help control the symptoms.
Different treatments for NMH are available, and there is no single course of treatment that will work for everybody. It took several years of antibiotic treatment to get my NMH under control. I tolerated the beta-blocker and the Zoloft well. The Florinef helped me for a short while, but I had to discontinue it due to side effects. As my condition improved, the medication doses were tapered down gradually. I discontinued Zoloft, and reduced the beta-blocker to half a pill in the morning. My tolerance to heat, exercise and prolonged standing improved greatly. Lowimpact exercise with weight training and yoga gave me back enough strength to walk on a hot Caribbean beach without symptoms.
Based on my experience, I know there are plenty of folks out there suffering from NMH without a clue as to what is going on with their bodies. If you are experiencing symptoms of lightheadedness, dizziness, shakiness, brain fog, and intolerance to exercise, ask your doctor about the possibility of NMH. It might be a good idea to see a cardiologist and have a tilt table test. It has been speculated that NMH may be the cause of chronic fatigue syndrome and fibromyalgia. Although I agree that NMH causes one to feel extremely fatigued, the cause of the dysfunction must be investigated.
NMH can be difficult to explain, even to medical professionals. In simple terms, although in reality it is more complicated, you can call it orthostatic intolerance, low blood pressure, or syncope. Most medical staff should understand that basic medical terminology.
Whenever I had to list my medications for a doctor visit for whatever reason, nurses always assumed I had high blood pressure because I was on a betablocker. Time after time I had to correct that inaccurate presumption, and explain the neurological technicalities of NMH. It is sadly entertaining because the paid professionals are supposed to be taking care of me, and there I was, educating them!
As I have mentioned in previous articles, I cannot stress enough the vital importance of educating yourself about your medical condition. Ask questions, take notes, research and arm yourself with as much detailed information as you possibly can. It is my hope that my story can help you on your journey towards perfect health.
Posts: 789 | From CT, | Registered: Jun 2006
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posted
The constant dizzy, lightheaded, feeling like im going to faint is by far the most incapacitating of my symptoms as well.
For 3 months i had symptoms similar to vestibular neuritis so for a while that was my diagnosis. Couldn't do much of anything because i was a dizzy mess. It wasent until my other neuro symptoms kicked in that aroused the suspicion
Now dont feel the spin's but more of a 24-7 drunk off balance, lightheaded which is just as bad.
Ive even seen one of the best dizzy specialist in the nation and he was at a loss. Went thro vestibular rehab and still nothing helped. Chucked it off as migraine associated vertigo wrote me a prescription for some nasty drugs and sent me off.
I go to bed every night praying that ill wake up dizzy free the next day. Funny thing i used to hate driving now id kill to be able to drive again.
quote:Originally posted by Lymetoo: babesia takes a LONG time to clear
This is NOT necessarily true. Most of the top LLMDS agree 4 months is usually more than enough. People just attribute all of their symptoms to Babesia, without monitoring titers or FISH test.
It's impossible to know if it's gone or not unless you monitor the tests, like I did. Please don't push people in the wrong direction Lymetoo.
Posts: 306 | From NY | Registered: Sep 2010
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posted
Thank you for such a thoughtful response AI. It was very enlightening.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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Gael- That makes sense to me when I get my episodes which ny basketball you described so well (I'm having them right now) holding my head like squeezing it a bit seems to relieve the vibrating spinning feeling a bit.
NY Basketball- I'm so sorry you have this all of the time, what a nightmare this is my first symptoms ever and I stil have it... mine is worse some days than others and some days I really dont feel it at all I feel very fortunate for those days.
Sending you a pm also about your llmd I'm curius if we see the same one.
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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I am in agreement with Lymetoo. Babesia treatment can take much longer than 4 or 5 months. Measuring the titers only works if you have a known species of babesia -- and even then I am not absolutely sure that that will work.
The microbiologist at Clongen has told hubby that babesia can hide out in the bone marrow and the brain and elsewhere. So if that is the case then in my opinion there is no proof that 4 months of treatment will eradicate the infection even if the titers go down.
Also, titers are only valid if your immune system is producing antibodies.
As for the babesia FISH test -- that only works for the 2 babesia species that IGeneX tests for.
Personally I would never assume babesia or other blood borne parasites were gone unless I had treated with primaquine and chloroquine after doing more traditional babesia treatment. If there are parasites hiding in the liver they will eventually come out -- it might be months or even years.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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It's impossible to know if it's gone or not unless you monitor the tests, like I did. Please don't push people in the wrong direction Lymetoo.
- Why should I keep my mouth shut and let you suffer needlessly?
I'm not heartless.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymeboy
Unregistered
posted
NY basketball, reliance on tests are the BIGGEST mistake all of us, including doctors make in treating Lyme. NONE of the tests are reliable. There are a lot of different strains of Babesia, Duncani being the toughest to treat. Could be you had a different strain, or you got the "magic bullet" treatment that worked for YOU.
I am glad to hear you got rid of Babs, I hope it stays gone. But I think your way off in your assertion. There are a lot of people suffering with Babs that have been treating a lot longer than 4 months.
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quote:Originally posted by nybasketball212: Most of the top LLMDS agree 4 months is usually more than enough.
My LLMD, who is one of the top LLMD's and speaks at ILADS convention did not agree with this statement. I was on babesia meds for the entire almost two years I was under his care. Even if he lowered the dose, my drenching sweats and air hunger would come back severely.
Not to mention, babesia, like Lyme, is a clinical diagnosis. My babesia tests were negative. There are many strains that aren't even tested for.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I feel for you. I get those symptoms, but on occasion. Sometimes only for a bit during the day. Last week, during a bad herx, I had 5 days of it...
I really feel for you.
Hugs
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
this is exactly the main symptom that is keeping me housebound. 24/7 lightheaded, whoozy, like a constant severe flu. It's been 7 months of antibiotics and this symptom won't go away. I've often tried to explain to doctor that it is like being drunk - unable to drive safely.
I'm glad to hear I'm not crazy, cuz the docs even the lyme literate doc, doesn't seem to have a clue about this symptom.
Posts: 348 | From MA | Registered: Dec 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I just posted under general about the same feelings except I thought it was congestion in my head causing this. Its terrible..
Posts: 1058 | From VA | Registered: Oct 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
This can be Lyme, Bart, or baba in my experience. My wost symptom early on was a dizzy, drunk feeling. It is mainly gone but lately has been back a bit as bandana seems to be flaring as of late.
Ny. Monitoring titers is aterrible way to determine if you are done.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
I have been this way forever. But I see that you guys tested positive for lyme and co's...I have IND and some + but still negative on all and I have two known embedded ticks?
I, and my LLMD, have now given up on every getting better. I have to believe that I dont have lyme and this constant balance tippy issue is forever. I have not driven in a year. I am no longer employed at the job I loved since I cannot walk, let alone get on a subway or bus.
I have a wedding tonight and besides the fear of going to the party, I cannot walk in a store to shop for anything to wear so going in a pair of dress pants and top (I feel hopeless now).
The only relief (slight relief) is the xanax they all tell me take for my inner ear nerve. There is a sense of anxiety with this dizziness that makes it all worse anyway.
My LLMD first said it was neuro lyme (since I do have many brain lesions) that was worsening my already damaged inner ear from a surgery. ALl of a sudden after only 5 months on omnicef only he feels I am in remission...but I am jsut as dizzy? So basically I am giving up and keeping my "disabled" name. Very sad!
-------------------- 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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lymeinhell
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Member # 4622
posted
Have you tried low dose valium (2mg bid) for the dizziness? It's standard treatment for Meniere's and was a godsend for me when I was in your shoes. It works like Meclizine in that it shuts off the inner ear. The neuro I went to said it was a really common treatment.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
I have been on low dose xanax so they wont change it to valium now. But I do hear many say it also works great.
My 2mgs of xanax is equivalent to 40mg of valium and that would be way too much since it is longer lasting in the system..
-------------------- 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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posted
I cannot believe there are so many others feeling like myself...
@ Beagle- My lyme doctors also say this not typical Lyme..it leaves me feeling very discouraged when doctors haven't got a clue either...I too describe it the same exact way to them saying it feels like I'm buzzed and had a few glasses of wine and they just look at me like huh??
And like so many of the rest of you driving is scary for me as well...
For those who have found relief, could you please share...I'm glad xanax and valium have worked for some...Taking ativan actually makes me dizzier though :-/
Anyone get relief from this?
::desperate!::
Posts: 82 | From NJ | Registered: Mar 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I'm starting to feel better from a low-dose steroid shot... I think my adrenals had called it quits...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I posted recently in another thread that hubby had been doing aggressive babesia treatment for 4 months now with IV clindamycin plus oral qualaquin (quinine) and malarone and cryptolepis. For the first time in years he has been able to raise his arms above his head and turn around in the shower (to wash his hair) without feeling dizzy.
He was going to take a break from babesia treatment for a couple of weeks before moving on to phase 2 -- a different protocol with different meds.
Within 1 or 2 days of stopping clindamycin, quinine and malarone he started having more pressure/brain swelling headaches and off balance/dizzyness symptoms. Talked to his LLMD today and he is going back on antimalaria meds tomorrow -- a week early.
He had stayed on minocycline and switched levaquin to cipro and added in bactrim when he dropped the other 3 babs meds. His LLMD is in agreement with hubby that bactrim works better in the test tube than in patients. Hubby had taken that previously. It may have been bacteriostatic in combo with alinia, but by itself doesn't seem to do much at all for his babesia duncani plus whatever other bloodborne parasites he has.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Haley
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Member # 22008
posted
Hi Bea,
Your mailbox is full can you PM me? I know I have asked part of this question before.
Can you tell me the dosage of the clindamycin again and the dosage of quinine and malarone that your hubby was on? Maybe the Cryto also, although, I don't know if I would add that. Do you think the Crypto helps?
Thanks a million!!
Posts: 2232 | From USA | Registered: Aug 2009
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posted
You know I find it just amazing the way all these odd symptoms can appear at diff times. My whole nightmare started with extreme anxiety and bouts of tachy the feeling of adrenal surges.. Just awful. That stayed with me for a long time without treatment then sort of left. I was then onto splitting headaches had on for 20 days straight thought for sure my head was going to blow. Headaches then gone before treatment. Then came the burning chest wall and upperback pain that's been severe. Feels like some one poured boric acid on me.. Sometimes with the tachy. Now my symptoms have shifted to always dizzy feeling.. Eyes fuzzy feel the need to sit and I am moody as all heck. This is now with treatment. And the dizzy drunk feeling is destroying my life. I hear you!!
Posts: 129 | From West | Registered: Jun 2011
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posted
I so wish my doctor would read some of these posts. Maybe then he would understand a bit.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
NY, June 2nd was 2 years I'm loosing hope...The "woozy, drunk, non-spinning vertigo feeling" is always present!
Nothing has helped...
Posts: 133 | From Philly/NJ | Registered: Nov 2009
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Rumigirl
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Member # 15091
posted
I agree with Lymetoo and Six and Bea, Babs takes MUCH, MUCH longer than 4-5 months to get rid of. Tests, schmests! And most LLMD"s do not agree that this is enough time to treat it. I would ask your LLMD for more treatment for it. And go elsewhere, if you have to.
I used to have that awful symptoms for years on end. What stopped it cold for me was several rounds of Factive, which is a fluoroquinolone, which is both for Bart and Lyme. Of course, everyone is different, so YMMV.
Bea really knows her stuff on Babs, etc., etc. And many of us have been humbled by this blasted illness. To assume that it or any other illness is gone just because of a test result or a muscle test results is a serious mistake when your symptoms are so bad. Please reconsider here.
Of course, it could also be Bart or Lyme, too, but don't leave any stone unturned. Or it will hit you in the head!
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
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posted
Bea,
I would also like the dosages and protocol that your hubby is on, as it sounds like it could really break the back of this beast (Babs). The mailboxes for both you and Haley are full right now, so I couldn't PM. Thank you!
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
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Member # 15091
posted
annier,
For heaven's sake, you and your LLMD are giving up after only 5 months on Omnicef alone??!! Crazy! Don't take that kind of BS.
Please insist on further and better treatment! And if you really can't get it with one LLMD, which I bet you could, go where you can get it. I know I've told you this before. Don't give up when you've barely started. Why? Onmicef alone isn't sufficient at all anyway. Nicely demand better and further treatment.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I'm starting to gather that people are saying the dizzy feeling is babs. I tested negative for babs fish and I have nothing on the check list but this symptom. My LD did not think this is one that I have but Bart for sure. Can Bart and Lyme cause this symptom?? Cause now I'm worried about babs! It's really the worst of it for me and very upsetting when you have a few children that you have trouble driving around.
Posts: 129 | From West | Registered: Jun 2011
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posted
That's my worse symptom at this point. Comes on like a freight train and leaves me grabbing for a chair... even if there isn't one handy.
That caused me to drop a gallon of potato salad I just made for my son's going away party yesterday. I just could not regain my balance. This is particularly troubling because I usually have an extraordinary sense of balance due to many years of Tai Chi practice.
I was also wondering about babs after reading all the folks that had both babs and vertigo. I just started a thread comparing my symptoms with those attributed to babs.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
For me it is babesia. I am getting over my recent bout with it. I started Malarone and am currently doing a round of Coartem.
When I was treating Bb/Bart and did not know I had babesia the LLMD gave me plaquenil which is anti-malarial. It greatly increased my dizziness and I thought it was a side effect. I realize now it was hitting the babs.
I know babesia takes longer to treat in some/perhaps most people. I am one of those people. You just can't have an expectation of how long treatment will take when you have these diseases. Treatment is always open ended. It takes as long as it takes.
ny, if you come back to check on this post again, I hope you consider further treatment for babesia. I also hope you get another LLMDs opinion.
-------------------- 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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