I was diagnoised yesterday with Lyme and I have been told for 3 years it was fybromyalgia

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wanttogetbetter
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/26/2009 3:58 PM (GMT -7)   
Firstly let me say I am so sick, and have been for a year
I am really scared I feel just awful, and I have sunken into a whole of depression over the last 4 months, not fro the news but from how I feel. Please give me some advice. I feel sick, so sick, tired, and totally out there. My career has suffered greatly, and I am the mother of two boys under 6. My husband tells me to not be negative. I told him I was so Sick I felt like blowing my well you know the rest. My doctors apt. isn't until March 1st. But it seems as if maybe the doctors dont know that much anyway...from some of the sites I have seen..Please help. tell me ill be OK. I was bitten 3 years ago, and I had a bulls eye, and I went to the doctors office immediately. They gave me a shot, and oral anti antibiotics and told me I would be ok. Guess what, I'm not.... shakehead

needshelp
Regular Member


Date Joined Aug 2008
Total Posts : 227
   Posted 2/27/2009 12:31 AM (GMT -7)   
wanttogetbetter,

I'm very sorry to hear story. Sadly, it not a unique story. Are you going to see an LLMD?

You need to keep the faith. You will get better. Yes it will take a while and yes it will suck.....but you will be OK!!!

When I hit bottom, I thought I was going to lose everything. I'm a scientists at a medical school and when I got sick I start missing a lot of work. I was very fearful that they would fire me and I would have no source of income/ health insurance. Fortunately, my advisors have been supportive for the most part. But it has hurt my career....very much so. The reduced productivity is a big set back as I will soon be applying for permanent faculty jobs that are highly competitive. At this point I am not really competitive.....

Having Lyme is tough on family and friends. They just don't understand. And when they read about it online they will get the impression that Lyme is no big deal. You take some antibiotics and get better quickly. Obviously this is not the case. I HIGHLY recommend getting the DVD 'Under your skin'. It is a fantastic movie that may help your loved ones have a better understand of the disease and the struggles you are facing. I also recommend finding a lyme 'friend'. You need to have someone to talk to that understands and knows what you are going through. Trust me, this has helped me tremendously.

When I'm having a negative day.....I have to remind myself that this is par for the course. It will take some time but one day i will get back my life. And I won't take it for granted.

Good luck. Keep us updated on your progress.
You can email me directly at brjoyce2@att.net if you wish. Hope you start feeling better soon.

violets
Veteran Member


Date Joined May 2006
Total Posts : 878
   Posted 2/27/2009 3:55 AM (GMT -7)   

Hi wanttogetbetter

I am actually happy for you that you will be getting the treatment you need if you have lyme. First and most important is to find a good doctor.

I also went almost 1 year (11 months) with severe symptoms before getting the antibiotics I needed.

But the good news is that you can get better!

When I was my sickest (which appears to be where you are at right now)I had the same questions. I wondered if I would ever get well.  I was depressed by all the sad posts from people with lyme.  I could not even climb 3 stairs without being out of breath. I had muscle aches, fast heart rates, insomnia, severe fatique etc. So it was easy to believe at that time after months of being ill that I might never get well. That was May/June 2005. I started antibiotics May 2006 when I joined this forum.

February 2009...I am back to running almost every day. Have been for over 2 years now. I can run up a flight of steps and then some. I am doing well.  

Hang in there.  This is a great forum and many people here will support you. I like to post to newbies because I still remember how it felt to wonder if you would ever be well again.

My advice...if you have been sick for a year...go easy.  If you do have this disease it takes patience. Get the treatment as per your doctor and start out slowly but surely.  Don't start exercising until your doctor and you think it is time. 

 

 

 

 

 


 
 


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 2/27/2009 8:10 AM (GMT -7)   
Hi wanttoget better,
Consider yourself blessed because you are one of the lucky ones that found out what was wrong. Be sure you are seeing a LLMD doctor. There are people on this board that can help you locate one. I made the mistake of seeing a doctor for a year that did not know how to recognize or treat the different pathogens carried by ticks. Most people are co-infected with at least one other disease and the sooner you find out everything you are dealing with, the faster you will recover.
I was bitten in 2006 and realized what I had in Feb of 2008 when I insisted upon treatment. I was as sick as you are then.
When you first start antibiotics expect to become much sicker for at least a few weeks. This is called a herx reaction and is caused from the dying bacteria releasing toxins that overwelm your body. I began to improve tremendously after just two months of abx. I have had my ups and downs since then but they are much more up than down. I recently went to an LLMD where I found out I am co-infected with bartonella. The tests are so inaccurate, you really need an LLMD to diagnose you. I feel much better mentally since starting treatment for that. I also have more motivation and energy.

You need to alter you diet to get well. Bacteria thrive on sugar and carbs so they must be eliminated, as well as alcohol and smoking habits. When you are on abx, yeast can take over so strict diet control is necessary to prevent that also. An LLMD will give you supportive supplements and herbs (or drugs) to control yeast overgrowth. When you begin to feel better, exercise is very helpful because it oxygenates your blood and the bacteria cannot live in a high oxygen environment.

Some people try herbal rememdies to cure themselves but I relapsed when I did this. I believe it is a good way to go when you are feeling symptom free for two months. The bacteria can go dormant into a cyst state where they are hard to kill so people often feel better while on abx and then relapse after quitting. Taking too little abx and/or for not a long enough period of time is the reason for most treatment failure. Not addressing the co-infections is another. Again, trust an LLMD. Many of these doctors have suffered from lyme disease themselves so they have an invested interest in finding out what works.

Hang in there - it gets sooo much better, not just the return of physical health, but mental and emotional too!

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 2/27/2009 11:26 AM (GMT -7)   
I also had the diagnosis of fibromyalgia. I also was told 18 years ago that 2 weeks of antibiotics would cure me. I feel for you as most of us on this board do too. I understand about how this has affected your homelife and work. Please go to a knowlegable LLMD do not waste your time with anyone who is going to guess about what is wrong with you. I went to 32 different specialists for over 10 years, many of these were my collegues that I have worked with. They failed me due to their ignorance about lyme disease and co-infections.

I am a psychologists and was told I needed one because there was nothing wrong with me. It turned out that after seeing a LLMD (one who does not take insurance) that I have many co-infections as well as lyme which I have been treating straight for 2 years. Lyme has screwed up my thyroid as well.

Please see one who will treat your symptoms and not only tests. I am so much better now than I was when I dragged my entire left side. I can now work again part time and do most things. Please have hope sweetie you will get better once you are treated. It won't happen quickly and it won't be cheap but it will happen. I would have re-mortaged my home to get well and I almost had to. But you can't put a price on functioning. Blessings
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!

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