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 Post subject: Afraid
PostPosted: Mon May 26, 2008 10:06 pm 
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I have been suffering with "fibromyalgia" for as long as I can remember. I have vague memories of a tick bite at summer camp when I was very little, and- in retrospect- I haven't been the same since. It's been very bad in the last 10 years, and I've been to just about every type of doctor to try to find some relief. I finally found a wonderful naturopath who now thinks that my symptoms can all be attrubuted to LD. I'm about to start some oral treatment, but I'm feeling very afraid.

From the literature I've read, I will most certainly get worse before getting better, but it seems like there's a good chance that I've got permanent damage due to the long-term chronic nature of the disease. That makes me worried that I'm going to escalate my symptoms by attempting to treat, but I still won't ever get rid of my pain, and all the rest of the things that go along with it...

Has anyone had experience with 15 years + of LD before starting treatment? I can't believe that I've been living so long feeling so terrible. I feel like I should be overjoyed at the prospect of finally finding a cure. In some way, I feel like this is my last best chance to get better- what if it doesn't work!

I would love to hear if anyone else has stories of overcoming the Great Imitator.


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 Post subject: Re: Afraid
PostPosted: Mon May 26, 2008 11:55 pm 
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Hi atlantamo,

Image

I must first say I am amazed you found someone who even suggested Lyme, you are very lucky. Most Md's are not trained in tick borne diseases, therefore know nothing about them or how to treat them.

Have you been tested through Igenex tick borne specialty lab for Lyme/co-infections? Or is your naturopath going to treat you based on symptoms? Has he treated other successfully before?

The reason I ask, usually a lyme literate Md is necessary in knowing how to treat lyme and the other disease's that can accompany it.

When you say you are starting treatment, can you tell us exactly what you will be taking?

Yes, my sister and I were diagnosed w/fibro more than 10 years ago. I found out in 2006 (after having cortisone shots that literally nearly killed me - cortisone and lyme don't mix, please remember that!) I have Lyme Disease and co-infections and dormant viruses that were reawakened = excruciating pain. My sister found out she also had shortly thereafter she had Lyme, then her husband and daughter have it, then my son and husband were tested and they have it too. (My story is at the Home page under Author's bio).

Are you aware of co-infections? Ticks carry several bacteria, not just lyme, called co-infections. Most of us w/Lyme also have co-infections.

All six of us in my family have been in treatment ever since '06. Lyme caught early (right after the tick bite) is usually much easier to "cure" than those of us diagnosed years after the fact. Yes, it does get worse in most cases (not all) before it gets better. This is called the jarisch herxheimer (or "herxing" as most of us call it) reaction to the die off of the lyme bacteria. When lyme dies it creates toxins that can increase symptoms, create new ones or have old ones reappear. There are "detoxing" methods you can learn, to help w/alleviating this somewhat.

I totally understand your fear, we all do, we all have been at the starting point of treatment. It is unpredictible how fast you may get well. I have seen chronic patients well in as few as 8 months and as long as 5 years. But many do get well, many also must remain in treatment longer.

Since this is a "disease" it is not like strep throat and we simply take abx (antibiotics) and get well in a few days, I won't lie, there are many peaks and valleys.

That is why I found support from others essential. This becomes a place where people really understand what you are experiencing and offer advice and support.

Click around the website here. At the main Home page under Resources are many good links that will help to educate you and familiarize you with Lyme symptoms, treatment and much more. The home page is http://www.truthaboutlymedisease.com

If you look up in the upper left hand corner of this post there is a green house, click on it, it will take you to the Forum Index. There are "newbie links", "Patient stories" and about 85 subjects of all topics under "Everything you need to know about Tick Borne Diseases". If you "page" through the subjects under that section, you will find video's, herxing info, a fibro/lyme article with many good links, detoxing info, basically everything you need to know about tick borne disease :-)

The newbies links are helpful as well and reading some of the stories of success can encourage you. I suggest reading Les Roberts story, Wildcondor's, Gayles story...these are just a few that did get well after being sick many years.

Treatment needs to be long term until you are symptom-free + two months beyond that and co-infections usually are treated first as they keep Lyme active. Let us know how you will be starting off ...what treatment exactly and if you are happy with your doctor. If you need help finding another LLMD (lyme literate Md) in your area, you private message me and I can help you find a lyme "specialist" near you.

We are happy you found us, we are here for you to express whatever you feel and to support you as you go through treatment. You have found a unique, kind, caring group.

Don't be afraid, you aren't alone....there are thousands and thousands of people with Lyme all over this country, if that is any consolation. We are here for you.

Again welcome,
Dana

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 Post subject: Re: Afraid
PostPosted: Tue May 27, 2008 12:13 am 
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:bounce:

Welcome! I just wanted to write a quick post to welcome you and to not be afraid! I'm 18 years old (Cog1st's son) and I'm currently in treatment. Theres definitely been bad times that I've absolutely hated but also plenty of good times. There will be peaks and valleys, that's just the reality of it..but it's really nothing to fear. You just have to program your mind to just relax into whatever is going on and just know that your body is going to do what it's going to do and you're going to live and come out healthier than you ever were before.

I'm sure your treatment will be easier than most of us that have had some type of pre-treatment trauma such as cortisone shots, or heavy physical stress and trauma like myself.

We're here 24 hours a day and here to help so don't be afraid to ask anything or to just vent your thoughts if you need to. :hug:

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"...I am the LORD who heals you." - Exodus 15:26


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 Post subject: Re: Afraid
PostPosted: Tue May 27, 2008 6:10 am 
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Hi there,... I have been infected my entire life I believe, at least for the last 20 years , I remember 2 ticks on me in texas. Gradually went down hill for years, the past 10 have been aweful. I too have "fibro" along with Lupus, RA, Scleroderma, and a slew of other diagnoses. I just figured out, on my own, with my husband, that I have LD. Been in treatment a year, the traditional way (antibiotics). Haven't seen much improvement yet, but I cadidly asked my doc last visit if he honestly thought I'd get well. He said yes. I asked him to elaborate. He said it's a crap shoot with this disease. everyone is all different. we are dealing with a disease that has many, many strains.

PEOPLE DO GET WELL,...I see and hear it all the time. I moderate on another board and have had 4 people tell me they are well from the natural route.

there is much power in the mind. BELIEVE you will get well, you WILL. we all will. Read one of my posts about a healing service I went to. I saw everyone on this board and the other place I visit, will be alright. It was a calm feeling of knowing we'd all be alright.

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"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: Afraid
PostPosted: Tue May 27, 2008 8:24 am 
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Hello Atlantamo,

Welcome to the forum. We hope that you will find friendship, support, comfort and helpful references to equipped as you move into your treatment.

Your fears are not unfounded, but, if you are with a physician who is well trained for treating Lyme, will educate you and guide you through the proper modalities that will help you manage each step and will stand by you in your treatement, you will be strong for your journey.

No one can know how each individual will respond, but for those who are seasoned warriors, there is much experience that can be shared to help along the way. Often, fear is b/c of the political warfare that has retarded research and development and an overwhelming sense of not feeling confident of a specific treatment protocol that will meet the need. This is not your fault, but it does put the patient in the position have having to do their homework in order to know what is best for their care.

That's why it is most important that you research and understand the full picture of Lyme disease, and make the right decision for medical care for you. Lyme, when truly the root of your suffering, can manifest in different ways depending on the length of time w/o proper diagnosis, your immune system, inherent weaknesses in the body that are vulnerable, whether you choose allopathic, integrative or alternative care, faith and a support system. (Not necessarily in that order).

There are several accompanying tests that can be run to help identify other areas of weakness or deficiency that can be addressed.

Our daughter is 17. She is a "lifetime of searching; mis-diagnosed for years" story. It was as a result of knowing there was something wrong, a root that was causing her refractory condition that led us to D.C. where a specialist included a Lyme western blot in his myriad of tests. Much to our surprise and to my denial, she was positive for Lyme. We went for a second and third opinion, b/c I began to read what I too did not want to believe possible; but, there was no avoiding it. Although Lyme is a clinical diagnosis backed up by labs, b/c we did not have an obvious 'bulls eye rash' (which is known now to be less than 50% of the time), and b/c we were years and years past what could have been either gestational or a pre-schooler bite (she's had ticks!), we were fortunate to have 'laboratory evidence'. Her labs continue to reflect persistent infection as we treat and as we flush the bacteria into her blood stream, AND as her antibodies begin to wake up and reflect more of the truth. Her CD-57 Natural Killer Cells (LabCorp) also clearly demonstrate the Lyme bacterial load. To be normal at 200, hers was 40. We began treatment with diet change to remove any offenders and to help control inflammation, and then entered into antibiotic treatment. She has been on routine IV micronutrients during this time b/c of multiple mineral deficiencies and metal toxicity, as well. We had to chelate these out. After a year, we were in need of transitioning to a completely natural protocol. Hers has been a complicated journey; long suffering with brain involvement. She had a history of sensitivity to chemicals and medications. This proved to be true with her allopathic treatment. We have a team of physicians as a result of prayer, literally. We needed help to understand how we could help her through this. Our naturopathic specialist is supported by our allopathic Lyme and integrative Lyme team members and each one are in different areas geographically. Our hope lies in nourishing the root, rebuilding the immune system which was dangerously compromised, addressing hormonal, endocrine, organ imbalances that resulted from years of mis-diagnosis (and not b/c we were not pro-actively seeking) and a smorgasboard of individualized herbal antibiotic, appropriate to her need supplementation.

It is important to know if you are dealing with any of the co-infections that can accompany Lyme disease. We initially thought we were battling just the Lyme; but, over the two years, as her antibodies have begun to wake up, her labs have revealed more and more for us. Clinically she was positive for Babesia, Bartonella and now Mycoplasma. As these were treated, we saw her body begin to respond over time. It was tough and I would not withhold that from you; but her story is not your story. So, I want to wrap the things that I share with you in a way that you recognize that not everyone has the same experience b/c each one's circumstances vary. Reading others stories can evoke a fear and this bacteria is tough enough. I had to pray for the ability to trade in my fears for discernment, equipping, facts and a direction that would help her Dad and I to know how to attack the bacteria. You have friends here who will support you and if you desire pray with you; definitely pray for you.

Our family just returned last month from Atlanta. Heth was granted a MakeAWish. I wish I would have had opportunity to know you prior to going - perhaps we could have met. If you are comfortable sharing who your physician is, would you mind PM'ing me? I have others from your area that we met and would like to know of trusted Lyme literate physicians who are treating in the Atlanta area where I could safely refer.

God bless, Sojourner (Diana)

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He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. Wait for the LORD; be strong and take heart and wait for the LORD. Fear not, for I have redeemed you; I have called you by name; you are mine... When you pass through the waters, I will be with you; the waves will not overcome you...For I am the LORD, your God, the Holy One of Israel, your Savior www.stylebyheatherrose.com


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 Post subject: Re: Afraid
PostPosted: Tue May 27, 2008 10:17 am 
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WELCOME! I am the mom of a 16 year old lymie in treatment for a year. Everyone here will help you through your treatement. Ask lots of questions, somebody has already been there. I am so glad you are starting treatment. You will get well!

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Susan


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 Post subject: Re: Afraid
PostPosted: Fri May 30, 2008 9:25 am 
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Hello, welcome to the forum! It seems like thats about how long it usually takes a Dr to figure out what you have. Or should I say what the person who is sick finds. Ive been sick about 17 years now. Still looking for that miracle cure. But definately feel better than I did a couple years ago. Hope you get the help you need. You found a good place here for support and information!

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