Hi New to this board please I need help and friends

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mainegirl
Regular Member


Date Joined Aug 2010
Total Posts : 61
   Posted 8/26/2010 12:31 PM (GMT -6)   
Hi, my name is marlene I live in ny, I have had lyme for 14 + years. I also have Bart,cardiomyopathy from lyme encphylitsis do to lyme,babesiosis, mycoplasma, Q fever, thyroid from lyme , last yr devoleped extreme low blood pressure, a mini stroke easter weekend this past yr.
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I have lyme in my spinal fluid,erlichosis, and other things just can't remember right now. I have been bedridden most of the yrs. I saw my 40's go by now I'm seeing my 50's go by. I have extreme fatigue it has always been my worst symptom. oh also kidney problems and have had uveitsis.
have other things just cant keep them all in my head.


I have heart palpatations , night sweats and day sweats, extreme joint pain and in the last couple months joint swelling, air hunger, can't swallow sometimes found out I have a hiatal hernia, tremors, can't sleep, migrating pains, trouble walking,, and no desire to do anything not that I could. or friends anymore,

People sometimes ask arn't you better yet? I don't know why but that always makes me mad.
or how about just go for a walk. Or wow you look better when you feel like dying.

I have had I thought 9-10 IV lines but my husband corrected me and said it was 12 and 1 port.
I just had a IV line pulled a couple weeks ago cause of infection. but out of 12 lines thats pretty good.

I'm getting to the point where I can't take anymore pills my stomache kills me. what am I gonna do I have a very supportive family and husband thank_GOD. but I am so tired, I want people that undestand what I'm going through know one understands unless they have it. I was reading a post on here about someone going to the hansa clinic. What is that.

oh also Has anyone else gone through there 401k and had to dip into life insurance policies. we have to pay out of pocket now for IV drugs. what on earth are insurance companies thinking? There is such a thing as late stage lyme...


please give me some advice and be my friend. Thank-You God Bless you all. And prayers for you all. cry

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 8/26/2010 3:49 PM (GMT -6)   
Hi Marlene,

Welcome to the Lyme forum. So sorry to hear that you have been suffering for so long with this illness. We can all identify with many of the symptoms and challenges that you have been dealing with over the years as most of us have experienced it first hand. There are some great people here who can share their knowledge with you. How long ago were you diagnosed with Lyme and the various co-infections?

We are here to help as we all journey together towards wellness.    I live in Connecticut, but see a LLMD in NY.
  
Gary

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/26/2010 4:15 PM (GMT -6)   
Well, I am sure Gary and Rhonda will fill you in about their Hansa Center experiences.  They can point you to their threads about Hansa.  It is not cheap from what I understand, but it sounds like it's worth it and some people did heal, when they had no other hope.

I live in PA.  I was diagnosed last year.  Had it for at least 2 yrs.  Was treated for 3 wks last year.  Got some relief, but did not last long.  My symptoms come back, stronger and more painful+a lot of new symptoms!  I just got tested for co-infections last Friday.  I should have the results in a few days.  I hope it will be good news (crossing my fingers for no co-infections).

Welcome!

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4282
   Posted 8/26/2010 4:22 PM (GMT -6)   
Hi Marlene and welcome!
 
So sorry to hear that you are sick for such a long time..  I also had lyme and ehrlichiosis for over 10 years and I got totally better using Dr. Jernigan's protocol (alternative medicine) at home over 4 years ago and I am still well (I couldn't afford to go to the Hansa Center).  My motto is if something is not working for a person then it's time to try something else. 
 
I suggest first reading Dr. Jernigan's book "Beating Lyme Disease 2nd Edition: The Good Life in Spite of Lyme" which can be purchased at the website below (lots of fantastic information in this book):
 
 
Also, click around his website.
 
 
He has also written articles that are very interesting, if you want the links, let me know.
 
Hang in there, this is a great forum with caring people!
Denise
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 8/26/2010 4:24 PM (GMT -6)   
Well, mainegirl, you've certainly had a tough journey. You're in good company...we've all got our stories, our infections and our co-infections. We all cope in different ways. I'm relatively new on here and have learned so much just by following the threads and links. Everybody here is so supportive. Spending more than you have is a common story with this disease...me included.

Simela, what kind of test did they do for co-infections? What co-infections? What lab? Cost? Are you feeling some better today? Do you think you were herxing? I had a rough day but not as bad as the days were in the beginning of abx. Some of them were pretty brutal.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 8/26/2010 5:04 PM (GMT -6)   
Hi and welcome. I'm sorry to hear your battle with Lyme has been such a long and difficult one. I've been sick for more than a decade, and was finally diagnosed with Lyme, babesia, and bartonella last August. Since then I have been on antibiotics, and I do a lot of natural things, too. If it ever seems to me that the antibiotics are a dead-end I am totally open to trying Hansa or the at-home treatment program, or to doing one of the many other alternative treatment protocols, including using a rife machine. There are many ways of understanding Lyme and of approaching treatment. We're all different, so even if something worked for someone else, if it's not working for me, I'm moving on. It sounds as if this is how you are thinking now, that maybe it's time to explore alternatives to "conventional" meds since it seems they are not doing the trick for you. I hope that this is the first step for you on a new path of healing,

Rose
I have Lyme; it doesn't have me.

mainegirl
Regular Member


Date Joined Aug 2010
Total Posts : 61
   Posted 8/26/2010 5:33 PM (GMT -6)   
Thank-You everybody for your responses. gary I do go to a Dr also here in NY I don't know if were ok to give a DRs name? so until I find out I can't say wondering if it's the same DR? also I was bitten 1 month after moving to NY.

Big welcome huh that was in 1995. but I was diagnosed in 1997. Most Drs told me I need anixety pills antidepressants or I was just being a women and felt like I was going crazy. everything for me got diagnosed within the first 6 months of treatment 2 yrs after bite,

denise,I have used up all funds so going somewhere would be to expensive for me I will probley buy the book.


Rose I have done every protocol and every other thing I'm tired, its so good to have people to talk to that are helping thank- you everybody

GOD BLESS marlene

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35758
   Posted 8/26/2010 7:16 PM (GMT -6)   
HI Mainegirl!
I would like to add my welcome as well!!! I am sorry that you have a need to be here, but you will find that the people here are kind, caring & most of all understanding!! Things can get stressful for us Lymies all too quickly, so a lot of us come here to vent as well.

I have tried abx treatment - for a short time- with no real improvement. For me acupuncture with Western herbals &, Traditional Chinese & Modern Chinese herbs, as well as homeopathy has been what has made the break through that I have needed.

We also have a couple of people who are following a homeopathic solutions. There are many different approaches to healing from Lyme & other tick-borne infections. There is no 'one size fits all' in treatments for tick-borne infections.

It's always best not to mention our LLMD's names, addresses or phone #'s as there are LLMD's being shut down because of their choices of how to treat us. If you want to share info of that nature with someone else here on the forum, it's best to use the email address that they have provided by clicking on the envelope under that members name.

I look forward to reading more of your posts.
I wish you peace along your journey to health.

Trav
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav
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