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Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 5/30/2009 10:18 AM (GMT -7)   
Is anyone else so off balance that they can barely get around to do ANYTHING?
 
Mine comes and goes all day, but I'd say 80% of my day I'm too dizzy to even think about getting up and walking into the kitchen, to the mailbox, out to the car, etc.
http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendid=399827188


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/30/2009 12:02 PM (GMT -7)   
hi jendays247,

i started have dizzy spells too, whent to my PCP about it and was given Meclizine 25mg x3 for it. it helped me, i'm not near as dizzy now. i have also had balance trouble for 2 yrs now and still do. i just have to be very carefuly when walking. try out different shoes see if this helps. i can only ware lightwaght flat shoes. almost seems like i have nothing on my feet.anything else throws me off balance now.
i hope this helps, hope everyone well soon
   RD
                                                                                                                 
 
still looking for answers
 


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/30/2009 12:04 PM (GMT -7)   
I feel this way most of the time also. It's both scary and frustrating. If I try to push through it just gets worse. Many times I will either completely lose my balance or feel as if I'm going to faint. Needless to say I spend most of my time either in bed or on the couch. I'm hoping treatment will eventually help with this.

Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 5/30/2009 12:48 PM (GMT -7)   
Scorpio - I am the same.

I used to be a sassy 20 year old who always dressed up and wore 3 or 4 inch heels...now I'm a 24 year old who feels like she needs a walker!
http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendid=399827188


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/30/2009 1:26 PM (GMT -7)   
i had to go as far as training my dog to help me walk. if i use steps w/o railing he is my rail. i usealy stay in bed or my recliner. been this way for 2 yrs now.but my dizzyness virtago just started a few weeks ago. 1 oof my biggest fears is of falling and messing up my knee worse, i had surgery on it last yr.
   RD
                                                                                                                 
 
still looking for answers
 


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/30/2009 3:25 PM (GMT -7)   
It's a shame we all seem to be in the same shape. Too bad we don't live near each other. My friends and family do not understand at all and even when they do want to come visit I never seem to have the energy or stamina to deal with anyone. Even though I feel isolated and want the company I'm just not up to it and it's so hard to explain to others who at times think I sound or look fine.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/30/2009 5:33 PM (GMT -7)   
scorpio maybe we should start our own commun for lymies, kidnap the best LLMDs to treat us and then we can have each other and our own support group live and in person. maybe then out of us all we can cover 7 days a week with someone who is on a good day, just rotate...lol

if i cant find some hummer in this i will fall apart.

wishing everyone the best
   RD
                                                                                                                 
 
still looking for answers
 


Tink Rox
Regular Member


Date Joined May 2009
Total Posts : 20
   Posted 5/30/2009 5:44 PM (GMT -7)   
Jen,

You're only 24? I'm so sorry that you're going through this so young. It's hard no matter what, but you're just a babe.

I was having horrible dizzy spells, too. I'm just shocked when I read the stuff on this forum and how much everyone goes through the same weird things. The dizziness was so bad that I had to quit my position at vet clinic cause I was so dizzy and tired I couldn't work there anymore. I had just started volunteering there, too. Trying to be normal. I went to the dr. and had a bad spell while I was there, which was good so she could see. I did two weeks of rifampin on top of the other 2 antibiotics. I was sicker than a dog, but the dizzy spells aren't as frequent as they were. They still come, but they don't incapacitate me anymore, though I get scared when I do have them. I get paranoid they'll come back, too. I hope you feel better soon.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/30/2009 6:35 PM (GMT -7)   
RD, Sounds like a fantastic idea. Sign me up! lol

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 5/30/2009 6:44 PM (GMT -7)   
My dizziness cleared with Babesial treatment.......have you guys done that?? I still take Artemesia and plan to stay on Babesial therapy (atremesinin for 1-2 years more)........it is said to be the hardest to get under control

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/30/2009 6:56 PM (GMT -7)   
I've been taking Mepron, Zithro, Artemesisin and Minocycline for a little over 3 months. After the first month I started to feel slight improvements but now feel as if I'm back to square one at times. Started IV Rocephin in March. I'm holding out hope that June will be the month it all kicks in. lol

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 5/30/2009 6:58 PM (GMT -7)   

I agree with pcpc.  Dizziness is one of the hallmark symptoms of Babesiosis.  Have you all been tested for it?

Jendays247, are you currently being treated?

 

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 5/30/2009 7:24 PM (GMT -7)   
Scorpio how much Artesinin? I did 900 mg/day (Allergy Research) and when I switched to Zhang did 6/ day with 300 mg / day ... I weigh 140 lb..... It did take about 4 or more months to improve...

Tink Rox
Regular Member


Date Joined May 2009
Total Posts : 20
   Posted 5/30/2009 7:37 PM (GMT -7)   
Scorpio,

Doesn't all that medicine make you sicker than you can stand? My dr. keeps putting me on and taking me off of stuff cause I can't take it. I didn't take ANY antibiotics today. Soemtimes I just throw them up. How can you stand it? Am I being a wimp and just need to be sick on the meds for awhile so I can get better permanently? What is Artesinin? Is it an antibiotic? I guess I can google that. I feel as sick on all the meds as I do if I quit taking them. I don't know, I've been on them for 2 years and my body is staring to just throw them up. TMI, I guess, but I don't know how you do that. I'm gonna google babesiosis, too. I was told I has bartonella. I always have something going on with my skin. When i took the Rifampin, my skin totally cleared up, but I couldn't get out of bed becasue of the nausea.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/30/2009 7:54 PM (GMT -7)   
PCPC, I'm taking one Super Artesinin from Allergy Research three times a day and I weigh 138. Believe it or not, I just took the last one left in the bottle and cannot find the new bottle that came with the last shipment so now I'll be without it for a few days at least. Ugh!!!

Did you take Zhang's along with antibiotics or did you switch to Zhang when you went off antibiotics?

I'm thinking about doing a consult with Zhang and adding his protocol to the antibiotics. I have an appointment with my llmd in less than two weeks and want to ask him about it.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/30/2009 8:36 PM (GMT -7)   
PCPC, I'm taking a total of 540 mg. of the Super Artemisinin each day (180 mg. each capsule).

Tink Rox, You're not a wimp at all. It's just a case of our bodies reacting differently and unfortunately we don't have much control over that. If only we did, we would all be well. lol You've also been at it much longer than I have been and I do think it's all starting to get to me only after a few months. I often feel a little queasy and there are occasional days when I have diarrhea right after taking my morning meds but one Immodium seems to take care of it. Didn't have any problems with this until the past few weeks.

After starting the IV Rocephin I experienced some abdomen discomfort (nothing too bad) and my doctor immediately sent me for an ultrasound and put me on Actigall. Didn't have any further problems until last week when I started to feel pain in my upper abdomen again. I stopped the IV's for two days and it felt much better. The doctor advised me to start the IV's again and see what happens so that's what I'm doing. He said to call right away if it comes back and he'll send me for another ultrasound. I'm starting to think I might need to pulse the IV's to give my stomach a break but he hasn't mentioned this yet.

I know my llmd treats aggressively and that suits me fine. I told him right up front that I was willing to do as much as I could handle and so far it's not been as bad as I thought it would be but who knows what tomorrow will bring. I really need to get back on track with my diet and start a detox program.

Oh yeah, Artemisinin is a supplement used in treating Babesia. I'm sure someone else here could give a better description.

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 5/31/2009 1:00 PM (GMT -7)   
Okay this is what I think about Babesia and antibiotics.

I wouldn't advice treating with IV Rocephin until all co-infections are under control and I wouldn't advice going from long term Mepron (which is very hard on the gallbladder, liver and pancreas) directly onto Rocephin (very hard on gall bladder).

Until Bart/Babesia/Ehrilich are treated, it mayh be impossible to make much headway with Lyme.

Mepron will cause nausea eventually so if you are on it for 2 years and nauseated that isn't a good thing. Be sure to have your doctor follow your amylase as well as Liver functions. If you are not improving on any regimen you need to change- IV treatment may be needed for Babesia if 5-6 months of Mepron haven't cured vertigo, I think. Or if Babesia isn't budging you may want to switch to Bart treatment using Bactrim as I mentioned earlier in this thread.

I also would increase Artemesia (Zhang) or Artemesinin- (slowly as you will herx) and do stay on Artemesinin while you withdraw from Mepron and stay on it for a months or years while tackling Bart and Lyme.

I am pretty much symptom free now having treated my Babesia agressively with antibiotics and herbs for 5 months and treating my Bart with Rifampicin initially and now IV Claforan. I still need to do Lyme treatments when I complete a few more weeks of Claforan. I dread this but hoping that without coinfections this will be easier. This is the order for treatment I think. And I think everyone should treat for all coinfections regardless of testing. There is so much overlap with symptoms- headaches, sweats, depression common for all.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/31/2009 6:38 PM (GMT -7)   
Dizzy for a couple of weeks now. Better this weekend. I've propped up my pillow behind my head and try sleeping in this semi-reclining posisiton...read this on the internet -- I think it has something to do with that old inner ear thing labyrinth...

Anyways, helps my neck and my balance.

I hate running in to walls.

What gives?
Bit June 08.


LF1980
Regular Member


Date Joined Jul 2008
Total Posts : 78
   Posted 5/31/2009 7:08 PM (GMT -7)   
You should go to an ENT - a good ENT - I have one in NYC if you can make it there. There may be fluid in your ears that he needs to monitor and get rid of. You have to go to a good Lyme literate ENT though or they'll never find it.
Also, might be a blood pressure issue - if the ENT finds nothing, try fludrocortizone.
L

Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/1/2009 1:31 PM (GMT -7)   
In March, I thought I was just fighting the germs that were going around and that I had severe sinusitis. It did start out with that, but because my immune system got knocked down so far, the Lyme that must have been dormant since 2005 came back out. One of the symptoms was the severe vertigo, which we were thinking was just from the sinusitis. I was also very tight around my upper back and neck, and it felt like all my nerve endings in my body were bruised. The chiropractor said that whatever glands are in the back of the neck were swollen.

I looked up the cranial nerves, and the 8th cranial nerve works with the semicircular canals for hearing and balance. My thought is that if this nerve is being pushed on, it contributed or caused the vertigo.

Are you on abx? I also advise to be very careful on steps. I fell down mine in March and was lucky I didn't injure or kill myself! I hold onto railings and wear flat shoes with a back to them, even now that I no longer have the vertigo.
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