HealingWell
Search Close Search
☰

Need help!

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/10/2011 12:00 AM (GMT 0)
I am about to be 22 years old and have until now (over a decade later) thought i suffered from extreme chrones symptoms, i have recently been diagnosed with not only lyme but spotted rocky-mnt fever. I am falling apart and there is no support in my state at all for this. i have left work, dropped out of college, and lost loves because of this. western meds and treatments have chewed me up and spit me out for over 10 years of my life....
what should i do??? i weigh at 120lbs at the height of 6'1"
i see an alternative doctor now who has managed to put weight on me, but the other symptoms stand strong. bones popping out of place, constant lethargy, and the inability to find anything interesting or enjoyable BECAUSE I FEEL LIKE IM DYING AND NO ONE IS TAKING ME SERIOUSLY!!!!!!!
right now im struggling to even hover over the keyboard this long to find a forum to have a lil validation or advice....
does this ever get easier? does the numbness in your hands and feet ever go away? will i be able to go back to camping and backpacking and loving life? will i ever go back to having regular functioning bowels and not throwing up nearly every morning???
what can i do now? and does anyone know of supplements that are better than the ones i already shove handfuls of down my mouth three times a day?
does DHEA help or is it ineffective?
so many questions, need more answers please!
thankfully,

~QZ
Posted 8/10/2011 12:16 AM (GMT 0)
Welcome to the forum. I would recommend starting by reading "New to Lyme - Start Here." There is so much information here.

You have found a good place to start. This forum was truly a lifesaver for me when I was at my lowest. I am feeling the best I have in 5 years so please try and think positive. It is hard but will help so much. There is help out there, you just have to research everything and ask a lot of questions.

Where are you located? The most important thing with this disease is to find an LLMD. Lyme disease is very controversial at the present time. Testing is extremely inaccurate and there is a battle between lyme doctors and infectious disease doctors as to proper treatment protocol. There are a number of good books to read that explain the whole controversy. But if you are anything like I was in the beginning, the last thing you need is to read more confusion.

I too tried going to whole foods and taking supplements but without proper guidance, I didn't get far. Are you undergoing treatment for crohns? From what I understand, crohns can be treated with steriods which are the worst thing for lyme. It shuts down the immune system.

Did you test positive for lyme or get a clinical diagnosis? Are you familiar with Dr. Burrascano's guidelines. Google it and you will find them. They are so helpful.

You are so young to have to go through so much. Hang in there and come back often. There is always someone to answer a question and lend support. My LLMD told me this disease requires the 3 Ps - prayer, patience and positive thinking!
Posted 8/10/2011 12:27 AM (GMT 0)
Hi QZ and welcome!

I'm so sorry you are going through all of this and yes, you will get better!  I had chronic lyme for many years and what worked for me (I am cured) is following a biological medicine (alternative) from a book called "Beating Lyme Disease" by Dr. Jernigan.  I think Amazon has the book. 

Please read New to Lyme - Start Here and see if you can start detox baths if you have a bathtub, if not, the foot baths are great.  Dr. Jernigan wrote an article called "Lyme Toxins the Primary Cause of Your Symptoms":

http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170382/?tag=mantle_skin;content

Excellent article!  After being in so much pain when I was sick (and I had thought it was the bugs, wow, was I wrong), I rid my body of toxins and I felt my legs coming back to life after losing use of them and having to use crutches.   It was awful!  My hip joints hurt, everything hurt... 

Lyme bacteria die on it's own and leave toxins as well as ammonia that not only causes pain but other symptoms such as brain fog, numbness, body pain, and the list goes on.  So detoxing is really important..   I took Dr. J's botanicals to restore my body and also to bind up the ammonia and rid my body of that.

Hope this helps and hang in there okay? 

Denise

Posted 8/10/2011 12:52 AM (GMT 0)
looks like you've been sick for a very long time.

the first thing you'll need to do is a course of antibiotics if you haven't already. your doctor will decide how much you need but i'd imagine at least a 1 month regimen or longer.

now when you've finished the antibiotics... you will probably still be feeling sick and tired. it takes time for your body to heal and start functioning properly again. since you were sick for so long, it will most likely take over a year for you to really start feeling good again. but you will get there so don't give up. i have some basic tips that will help...

upgrade your diet. make sure your drinking water and green tea. eat as healthy as possible. avoid sugar and alcohol.

avoid stress. relax. get outside for a hike and forget the world. Lyme makes your brain feel crazy so learning to calm yourself down and focus is important. i have also found video games extremely therapeutic for focusing my brain.

yes DHEA has personally helped me. it has helped me with fatigue and physical confidence. i also recommend some other supplements...

Astragalus - inner energy
L-Theanine - relaxes mind
Melatonin - restful sleep

hope this helps. good luck.
Posted 8/10/2011 1:08 AM (GMT 0)
wow, for the first time i have a little bit of support on this. in answer to the question, "Is your family behind you?" my mother just now has apologized for all the years of blaming me as the cause, she would say its me taking drugs (when i truly wasn't), and not treating my body right. my brothers and lovers never fully believed me, like it's in any way convienient to be impared in any way....????? i have been through years of switching diagnoseses and treatments with herbs..
Here is a list of some of the vitamins/supplements im taking now:
Aloevera gel- when needed
Artecin-1-3X a day
berber cap-1-3X a day
Thyroxanol-1-2x a day
Una de Gato (cats claw tinkture)-1/2drpr-3x
vit D 1000iu per drp-1drp daily
GI Flora-1-3x a day
Basic nutrients4 -2-2x a day
and an integrated body systems Homeopathic remedy for lyme-co-infection-1/2drpr-3x a day
plus others by my choosing...

i cant thank you enough for the support and though im not religous, may your god bless you for the help, and certainly you get mine as well :)
Posted 8/10/2011 1:20 AM (GMT 0)

Jess1ca318 said...
QZ-- I'm 25...only in my first month of treatment. So I can relate to how scared you feel. And the questions your asking (that I'm sure everyone has wondered at some point) I'm still hysterical. I think its amazing you now have a diagnosis...at least NOW you know what your fighting and your on your way to fighting it.

Now you need to work on finding an LLMD (lyme literate doctor) its important to go see them as they know just what to do with you..where as a normal MD would prob put you on a treatment for 30 days and send you packing. (thats what you don't want)

What supplements are you taking? May want to list them and a moderator could come and advise you on that. They are all extremely knowledgeable here and well informed, has helped me out a ton...

Do you have your family behind you? I sure hope so.

But if not--come here, and get your support. They won't ever shoot you down. We all feel what you feel. I'm really sorry your going through this, don't give up hope though. Hope is what keeps us alive. Your going to feel better, and get better. I'm praying for you and your healing soon. :)

is this really your you tube thread?
i watched the videos and i could almost cry now knowing other people are experiencing this.... im so sorry that you are nearly as young as me and dealing with this.. ha i hoped i could see the world before i had to face something like this... is there a way to give you my email or skype number that we can be in touch?? im new to these sites and stuff and i also have a facebook, then again, who doessn't?
if so, let me know. i dont know anyone who i can relate to, and this was like a lil last effort of finding out before i have to let someone (a doctor) take control of my life. not to play the worlds smallest violin for you but this sux and i think you guys on this site can help me, especially people around my age. when getting your life started while it feels like vitality is ending..

thanks again..

~Qz
Posted 8/10/2011 1:31 AM (GMT 0)
hi stg3!
i too am on the younger side, at 21 and undiagnosed still! i dropped out of a study abroad program, medical leave from my job, am debating enrolling for classes and moving to campus this fall, and also have had relationship problems so i can really relate on all of those aspects. and i know how it feels to be laughed at or dismissed- ive seen so many doctors who dont think anything is wrong with me. but they dont know how my life has turned upside down and how i feel everyday! its not normal. however, i think that its great you have a diagnosis and can get on the path to healing!! personally, i have heard turmeric and teasel are very good for lymes! good luck and let us know how your doing :)
Posted 8/10/2011 1:38 AM (GMT 0)

teeners said...
hi stg3!
i too am on the younger side, at 21 and undiagnosed still! i dropped out of a study abroad program, medical leave from my job, am debating enrolling for classes and moving to campus this fall, and also have had relationship problems so i can really relate on all of those aspects. and i know how it feels to be laughed at or dismissed- ive seen so many doctors who dont think anything is wrong with me. but they dont know how my life has turned upside down and how i feel everyday! its not normal. however, i think that its great you have a diagnosis and can get on the path to healing!! personally, i have heard turmeric and teasel are very good for lymes! good luck and let us know how your doing :)

thank you very much, please if you have the time to talk or just email or anything it would really help to just connect to others my age. i think the more people i have to validate this condition the easier it will be to treat and deal with emotionally. strictly medically speaking my love life doesnt work out because of the lack of my own energy level sexually and mentally. i was a very idealistic college student in-between waves of overwhelming 'sick' its nice to at least have a inkling to as what is causing the distress, but it almost doesn't help. no one believes it..
i never knew it was this easy to find other people who are ging thru this

thnx!

~QZ
Posted 8/10/2011 1:40 AM (GMT 0)
Just wanted to add to everyone else and say you're not alone. I am 24 and started treatment this month. Still working on finding a good LLMD. We are here for you, don't give up hope!
Posted 8/10/2011 1:49 AM (GMT 0)
my mind is going so crazy... i cant help but shed a tear right now.. i mean i was 9 years old when i couldn't get up for school anymore and just now i am finding a cause?!?! its like finding out that your whole quest for the meaning of life or vitality had an answer this whole time, and i never could have guessed..
aaaand btw, does anyone know what a fife or rife machine is?
Posted 8/10/2011 2:24 AM (GMT 0)
thank you all so much, im at a loss of words.. my lifes problems do have answers!!
Posted 8/10/2011 1:27 PM (GMT 0)
Wonderful to see people helping people ! Now if we can just the medical community on our side, we'd be on our way !
Posted 8/10/2011 2:25 PM (GMT 0)
HI Stage3!
Welcome to our little spot!! I am sorry that you have a need to be here, but I am sure glad you found us!!

If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information and informative links that have been put together by our members here! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. It would bring up some info on Rife machines for you as well. We must be our own health advocates now and the best thing to arm yourself with is knowledge!

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:[email protected]

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

AS you can see, you are far from being alone!! We are here to help answer questions, and help direct you to the info you are searching for, and of course to provide a shoulder to lean on once in a while!!
Posted 8/11/2011 5:04 AM (GMT 0)
 

Hi QZ,

Welcome!  I've had Lyme, Babesiosis, and Mycoplasma since age 14, and it was hard for me to get through school, too.  I hardly ever slept and was tired all the time. I went 15 years before anyone tested for Lyme. 

DHEA is what your body is supposed to be making, but it's lacking it because Lyme can cause mitochondrial dysfunction.  I'm taking DHEA to help with energy.   

Looking at your supplements: burbur is a general detoxifier, aloe is for the gut, thyroxanol--do you have thyroid issues? Cat's claw and the homeopathic for Lyme--awesome!  I like your doc already!

Have you been tested for candida in your gut?  It's common for people with Lyme to have candida.

I will be starting TAO free cat's claw with a nutritionist soon.  I'm currently on the Cowden Protocol, in combination with a modified Gerson Therapy to strengthen the immune system & assist with detox.  I got confirmation from NutraMedix that this was okay for me.

Posted 8/11/2011 5:23 AM (GMT 0)

Lyme14 said...
Hi QZ,

Welcome! I've had Lyme, Babesiosis, and Mycoplasma since age 14, and it was hard for me to get through school, too. I hardly ever slept and was tired all the time. I went 15 years before anyone tested for Lyme.

DHEA is what your body is supposed to be making, but it's lacking it because Lyme can cause mitochondrial dysfunction. I'm taking DHEA to help with energy.

Looking at your supplements: burbur is a general detoxifier, aloe is for the gut, thyroxanol--do you have thyroid issues? Cat's claw and the homeopathic for Lyme--awesome! I like your doc already!

Have you been tested for candida in your gut? It's common for people with Lyme to have candida.

I will be starting TAO free cat's claw with a nutritionist soon. I'm currently on the Cowden Protocol, in combination with a modified Gerson Therapy to strengthen the immune system & assist with detox. I got confirmation from NutraMedix that this was okay for me.


i went out and got DHEA today, and a b-complex support. i do have thyroid problems as well... all i can really remember is feeling this way and i want to live my life. i just started this new set of vitamins and supplements, so fingers crossed...
is it normal to feel worse when starting to fight the lyme/co-infect?? i feel terrible right now, and im not sure if its just the usual flare-up or my body fighting.
Posted 8/11/2011 12:23 PM (GMT 0)
Hello!

Is it is normal to feel worse when you start to fight the co-infections -- sorry to say. But that's not all bad news at all. You should start feeling better in a few days and see a continued improvement in your condition.

Glad your meds are working!
✚ New Topic ✚ Reply