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Lyme Disease
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Lvg123
Regular Member
Joined : May 2016
Posts : 195
Posted 5/3/2016 3:20 AM (GMT 0)
Hello,
I am brand new here. I'm 29 years old and tested positive for Babesia. I'm currently taking Mepron 5 ml suspension 3 times a day and 500 mg of Zithromax once a day. I'm having a really hard time right now. I lost my job because I needed to do flex hours and my boss said no then fired me. I have a daughter who's around 1 years old and I can't take care of her because I am completely incapacitated at the moment. I've been on the medicine for a couple of weeks and there has been no resolve. I recently sent lab work to Igenix to have my blood work further examined for Lyme and other co-infections. Right now, my most disabling symptom is extreme fatigue...I can't get out of bed to even make food without feeling like I'll collapse. I wanted to know if anyone else deals with crippling fatigue and what's the best way to overcome this? How long did it take for you to feel better with medicine? I currently can't drive and I really need encouragement that I will one day get better...I need to be able to work and function at some point and right now I have no hope that I'll be able to do that. Thanks!
PeteZa
Veteran Member
Joined : Jul 2015
Posts : 9729
Posted 5/3/2016 3:25 AM (GMT 0)
Oh Lvg many of us have been there and I know your pain. I was a fatigue person to the max when I was first diagnosed. I would sleep all night, get up and have a little breakfast and fall back asleep. Wake up for lunch and back asleep again and all day and then sleep all night. I was so scared. And then I got the head pains and the jaw aches. Then more and more symptoms.
Treatment got me better and better but I did have to detox and eat good healthy food. Lots of water!
You can do this. I know you don't have much energy and just finding this place had to be a chore. It was for me, and I as so desperate to find help.
That is what we are here for.
When you can, little by little, read our first post called New To Lyme? ... Start Here! It is so full of information.
And, ask away any other questions you may have.
Lvg123
Regular Member
Joined : May 2016
Posts : 195
Posted 5/3/2016 3:41 AM (GMT 0)
Thanks Pete I really appreciate it. Everyone seems so strong and knows so much more than I do. I just went through the rounds of seeing many doctors and no one finding anything. It's really depressing.
PeteZa
Veteran Member
Joined : Jul 2015
Posts : 9729
Posted 5/3/2016 3:53 AM (GMT 0)
Gosh I know. My first doctor said I had a sinus infection. I was shocked!
I did not even know about
lyme when I got bit. Absolutely nothing! I thought it was a spider bite then about
2 months later I had weird things happening to me. My ears were plugged up feeling and I had a weird sore throat - that is why the doc said sinus infection. But he was so wrong.
I will tell you this, you end up very educated about
lyme in a short time. We all end up with degrees!
Try and stay as up as you can. Don't watch the news. Do funnies on YouTube and stay as stress free as you can.
PeteZa
Veteran Member
Joined : Jul 2015
Posts : 9729
Posted 5/3/2016 3:57 AM (GMT 0)
A good thing to start now is a journal. Write down how you feel, what you are taking and how much and what you are doing to detox.
Oh yeah, the famous word - detox!!
Here, check this out.
www.tiredoflyme.com/detox-methods.html
Lvg123
Regular Member
Joined : May 2016
Posts : 195
Posted 5/3/2016 4:18 AM (GMT 0)
I will def start a journal. Detoxing has been hard for me I've been taking a supplement called LV-GB Complex which is supposed to help my kidneys and liver. I'm in a bad spot right now and can't eat and drinking too much water makes me nauseous. I'm basically sleeping all the time and am wired in the middle of the night. I am hoping in a few weeks that'll change. I've had babesia for at least 10 years and took large amounts of Adderall and nuvigil to compensate for the fatigue. 6 months ago I was having a very hard time breathing and felt like my heart was going to explode and had all these strange neurological problems so my doctor stopped prescribing me Adderall and nuvigil. I can't function as my normal self though and I really hope these medications do something.
Girlie
Forum Moderator
Joined : May 2014
Posts : 48365
Posted 5/3/2016 4:22 AM (GMT 0)
Hi Lvg123 - welcome to our community!
Sorry you are feeling so terrible...but I am glad you have a diagnosis and have found this forum.
This forum is a great group of knowledgeable and supportive people. Please ask any questions you have...and come here for support.
Summersun
Regular Member
Joined : Apr 2014
Posts : 451
Posted 5/3/2016 11:58 AM (GMT 0)
Hi Lvg123 - Welcome! So sorry you are going through this. It must be incredibly difficult with a 1 year old to look after. I can't imagine.
I was in your shoes 4 years ago with the extreme fatigue. I am writing to tell you there is hope. Never give up. With treatment you will get better. As others have said detox is key. I wish I would have realized to what extent that is true at the beginning of my treatment.
Stay strong for yourself and your little one.
momoftres
Regular Member
Joined : Jan 2012
Posts : 36
Posted 5/4/2016 3:54 PM (GMT 0)
Dear lvg123,
So sorry you're feeling so terrible. It's interesting that you've lived with Babesia for 10 years, then suddenly developed the air hunger after the birth of your child. Lots of people have similar stories about
their tick borne diseases flaring after tramatic events such as the birth of a child, a car accident, a divorce, or a death in the family. For sure it involves the immune system.
Glad you are on treatment, and glad you are getting tested for Lyme and other co-infections. You're seeing a good LLMD, right? I'm assuming you are since you are on Mepron and zith, and are being tested at Igenex.
Don't stop treatment until you are symptom free for 3 months. That might mean a year or more of treatment. You can stop for a few days to a week if your symptoms get really bad, but get back on when you can.
Are you pulsing the mepron 3 weeks on and 1 week off (staying on zith the entire time)? That's how my doctor has me take it. I think the week long mepron break gives the body a break. Curious if anyone else does it that way.
I am also on Mepron and zith, but only taking 1 tsp twice a day.
You are off to a really good start!! It takes time to see a difference with Babesia. My daughter has/had it too and after her first dose of Malarone (=mepron+proguanil), got really bad plugged up ears. I've never heard of anyone else saying that. My son has/had it too. Neither of them are currently on anything, and my daughter has been home sick for 3 days now with a stomach and headache, and achey hips, and my son is tired all the time. Yikes.
Good luck, and fyi, there is a facebook group called Babesia buddies, if you are into facebook. Bee venom therapy is another option some people are using with success for Babesia. But, if I were you, I'd give the Mepron and Zith a chance.
Rikky1
Veteran Member
Joined : Jun 2015
Posts : 3153
Posted 5/4/2016 4:24 PM (GMT 0)
you're going to have to stay on the zithro/mepron combo for at least a few months to see if any progress is made. you've had babesia for so long you are bound to get worse before you get better. also you are on a lot of mepron starndard dosage is 5ml 2x/day. maybe you should back off to that so you don't overload yourself too much?
note there are plenty of other babesia treatment options if this doesn't make you better. also wondering if you have any other infections like lyme or bartonella. almost everyone has more than one infection regardless of what lab tests say.
Girlie
Forum Moderator
Joined : May 2014
Posts : 48365
Posted 5/4/2016 5:48 PM (GMT 0)
"also you are on a lot of mepron starndard dosage is 5ml 2x/day. maybe you should back off to that so you don't overload yourself too much?"
According to Dr. M.R. - the dose can be raised to 10 ml twice daily. (total of 20 ml). But, he does say after 1 or 2 months of 5 ml twice daily - if the night sweats or other Babs symptoms aren't improving...then increase.
If you're having trouble with the amount you are on...you might want to go down to 5 ml twice a day...and see if your symptoms are more manageable.
You can always add the third dose back in later.
Krimpet 🍔
Veteran Member
Joined : Apr 2016
Posts : 3275
Posted 5/4/2016 6:29 PM (GMT 0)
If you haven't already, you should probably also have your thyroid checked? FT3, FT4, TSH, and RT3. Lyme can affect your thyroid and add to the symptoms. You can have air hunger and fatigue with thyroid conditions as well. A lot of people fail to get that testing which sometimes does add to their symptoms unknowingly. Also most docs/LLMDs won't offer it because they aren't aware of the relationship.
momoftres
Regular Member
Joined : Jan 2012
Posts : 36
Posted 5/4/2016 10:00 PM (GMT 0)
Krimpet,
Hmmm...I have a 2.1cm nodule on my thyroid, but all my labs have been good. I have air hunger and my heart is all wacko sometimes. My air hunger went from a few times a month to nearly every day in October of 2014.
I just found this post about
air hunger and hypothyroidism, which is extremely applicable and very informative!!! Everyone, make sure you read it since it could save you years of suffering if that's your problem.
https://www.facebook.com/ThyroidDiseaseAwareness/posts/585937184755207
Girlie
Forum Moderator
Joined : May 2014
Posts : 48365
Posted 5/4/2016 10:27 PM (GMT 0)
momoftres - Did you get the FT3 and FT4 tested ...or just the TSH?
Also, the FT3 and FT4 should be in the upper end of the range.
You could post your test results...we have a couple 'thyroid savvy' members - one is Astroman, and another is one of our Mod's, cd3764.
They are really knowledgeable about
thyroid testing, thyroid meds, thyroid symptoms, etc...
FUBU
Veteran Member
Joined : Oct 2015
Posts : 750
Posted 5/5/2016 3:09 AM (GMT 0)
I don't know if Babesia toxins are as bad as Lyme, but before I started antibiotics, I was very sick with chronic fatigue. I think maybe you are just too toxic at the moment, maybe the antibiotics are killing too much, and you can't detox fast enough. I had that problem and I had to be on super low doses and go very slow throughout my treatment. I would also see if you have the MTHFR gene and then get with some supplements to help if that is the case because detoxing is very important if you want to feel better. Sorry you are going through this!
momoftres
Regular Member
Joined : Jan 2012
Posts : 36
Posted 5/5/2016 10:16 PM (GMT 0)
Babesia toxins are pretty bad, but I don't know if they're as bad as Lyme toxins either. I just seemed to get sicker the longer I treated Babesia. I finally got 23&me testing this fall. Then I had HLA DQ and HLA DR testing this winter which shows I have the "dreaded" genotype (4-3-53) that makes it hard for me to detox.
Dr. Shoemaker has a paper about
detoxing at the same time as treating Babesia entitled " Atovaquone Plus
Cholestyramine in Patients Coinfected With Babesia microti and Borrelia burgdorferi Refractory to Other Treatment ". Here's the link:
http://www.survivingmold.com/docs/Resources/Shoemaker%20
Papers/23_1_1-111.pdf
I think the basic idea is that your body is more effective at clearing the infection(s) if it's not dealing with the toxins produced (causes massive inflammation and dysfunctional immune system) by the infections. Here is a great place to learn all about
biotoxins, and their effect on our health and how you fix it: http://biotoxinjourney.com/
momoftres
Regular Member
Joined : Jan 2012
Posts : 36
Posted 5/5/2016 11:04 PM (GMT 0)
Girlie,
I asked my integrative doc if I could still be symptomatic with normal labs. Haven't heard back yet.
Most recent (Nov 2015) FT3 is 3.0 and FT4 is 1.41. I know that I've had these tests in the past, and the numbers weren't that good. They were still in a normal range though.
Girlie
Forum Moderator
Joined : May 2014
Posts : 48365
Posted 5/5/2016 11:14 PM (GMT 0)
momoftres - could you also post the reference ranges -as they sometimes differ between labs.
What about
the TSH...what was that...(and reference ranges)
FUBU
Veteran Member
Joined : Oct 2015
Posts : 750
Posted 5/6/2016 2:48 AM (GMT 0)
I was tested and have the HLA DQ and my doctor put me on cholestyramine 4x a day to mop up the mold toxins for about
a month.
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