I have been seeing an Infectious Disease Dr. although I know everyone on here believes LLMD or nothing. I also see a homeopath who is just giving me supplements. I have severe gastric issues which is why I have had a hard time treating.
I went to a LLMD originally and they had no time to deal with me it seems. They put in a picc line and then when I got blood sepsis they didn't want to know me.
Anyway, the ID dr. has had me on Bicillin for 10 weeks and my insurance is actually paying for it.
Well, I did a little too much on Sunday and was extremely tired and felt a little off balance. Ever since then (the past 4 days) I have had vertigo.
Why would this start now? I am scared and confused and I have to work my job and I'm a single parent and I am emotionally wrecked.
I tried to call my dad yesterday for support and he just screamed at me because he doesn't understand Lyme or want to but he thinks I can just "rest" this away. He blames me. I gave him the Under Our Skin DVD to watch a month ago and he has yet to do it.
What do I do now? I am afraid to go to a LLMD because 1) I can't afford it 2) They don't seem to understand how severe my stomach issues are and I can't end up incapacitated and lose my job.
This disease wrecked my already failing nine year relationship and now I have nobody. I feel like just ending it somedays.
Posted by lymeinhell (Member # 4622) on :
Have your PCP refer you to a gastro to make sure things are as they should be. C Diff or candida or whatever it is should be addressed. And find a new LLMD that gives a dang.
There's so many reasons for vertigo, but the first one that comes to mind is herxing. Or perhaps you are just plain dehydrated from the gastro issues. Eat a banana or potato or go get some electrolyte powder to see if adding some potassium back into your system makes you feel better. Or even some Propel or Ensure(Gatorade just too high in sugar). Unchecked gastro issues can lead to really feeling bad, dizzy, brain foggy, muscle pain. Been there, sorry to say.
I personally don't think the movie goes far enough explaining how rough it is on Lyme patients, so I'm not sure watching it would enlighten him anyway. Just IMHO.
Posted by seibertneurolyme (Member # 6416) on :
Do you know if you have bartonella also? That infection often causes G.I. symptoms. Hubby has had gastritis diagnosed with 5 different endoscopies in the last 9 years. That was one of his first tickborne illness symptoms before he even started antibiotics.
For hubby Levaquin actually helped to heal his stomach. He had previously been treated for G.I. parasites which helped for a year or so, but then the bart seemed to move to his G.I. again and the gastritis even progressed to superficial gastric ulcers.
There are lots of herbs which can help heal a leaky gut. One of the cheapest and easiest things to try is aloe vera gel. I think the dose is one or two ounces a couple of times a day. If you take too much you will get diarrhea so you would just back off on the dose if that happens.
Bea Seibert
Posted by wendihk (Member # 20554) on :
Actually my gastro problems are mainly GERD and Gastroparesis due to neuro-Lyme. I have had every gastro test out there.
I just went to the ID for my Bicillin and we were noticing that every 4 weeks or so I have an episode of something.
I have read many times that people have herxes with it cycling. The ID doctor described my problem as disequillibrium which is probably more accurate than vertigo. If it was true vertigo I wouldn't be getting around.
I see my homeopath tomorrow so I am going to see what he has to say.
Posted by map1131 (Member # 2022) on :
wendi, I second what Bea says on bart. I also have had GI issues. Labeled with gastritis by a gastro. Lab couldn't find any bacteria, etc in tissues samples from endoscopy or colonoscopy.
I started 300 mg 2 times a day on rifampin 6 weeks ago to see if my suspicion of bartonella responded. It did. My GI track is flowing so much better.
I also have done levaquin in the past (only 30 days on, 30 off) with same results but after a time off them my GI went back to it's old ways.
Now fingers are crossed that 3 mths of rifampin then I'm going to switch to rife machine for continued support.
Rifampin is cheap abx, where as Levaquin is more expensive abx. I'm not familiar with Bicillin. Is that lyme abx?
Pam
Posted by seibertneurolyme (Member # 6416) on :
Wendy,
Maybe try phosphatidylcholine or even lecithin (much cheaper but not as potent). The choline is what is needed to stimulate peristalsis. Or eat egg yolks -- just the yolks by themselves -- up to 3 per day. The whites keep you from absorbing as much of the choline. The phosphatidylcholine that hubby used to take was from the website below. It was expensive but I think this is one of the better brands. At 1 or 2 tablespoons per day the bottle only lasts for 30 days or less.
Hubby used to say the liquid phosphatidylcholine tasted like burnt motor oil. Start with 1 teaspoon as it might be hard to tolerate and could cause nausea and even vomiting at first.
Both Lyme and babesia rob the body of choline so in theory you could be feeding the bugs, but if you have any neuropathy issues or cognitive problems then I think the benefits outweigh the risks especially since you are on antibiotics.
A 2nd strategy would be to take lots of things which cause the liver to excrete bile -- that also stimulates peristalsis. Hubby always takes ox bile supplements (Nutricology brand from vitacost is one source) to help with fat absorption.
I also give hubby some very strong herbal tinctures because he tends to have elevated bilirubin and I am trying to prevent any gallbladder issues from developing. He uses celandine and every 3 or 4 months I give him toadflax for a week or two.
The celandine is HerbPharm brand and the toadflax is from Elk Mountain Herbs.com
Start with very low doses and work up if you try the herbal tinctures.
This is not medical advice, just info based on hubby's experiences.
Bea Seibert
Posted by merrygirl (Member # 12041) on :
how are your ears? if they are acting up could be why you have vertigo.