posted
I was doing well till yesterday then I just felt doomed, crying, anxious and as I cry I get more frustrated b/c I am like why am I crying! Why amd I feeling so out of it and out of control!!
I feel like I will never get back to who I was... The only good thing i hope is that I made an apt with a LLMD infectious disease dr next week..im hoping he will help even though my
Igenex is not positive by their standards two reviews on this office said "he wont treat unless yoru positive and doesnt treat co-
infections" Im hoping this is not so...I have no where else to turn unless i take a credit card out and charge money i dont have to see a specialist...
Then I go through the battle what if this is in my head and im just going mental...I hate this...
Posts: 29 | From CT | Registered: Sep 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Meloctober....
Not sure where to start. I have been crying the past two days.
What helps me is to focus on what I can do and what positive things there are in my life.
Medically, I am not the one to give advice on possibilities.
Hoping this doc can help you in some way. I know what it is like to not have the funds to pay out of pocket for a doctor that will actually help and then not to have the funds to purchase the meds needed.
But, don't be surprised if he or she just shakes your hand and sends you on your way. I hate that but it happens more times than it should.
Your brain probably works better than mine so not sure giving advice again is valid.
But, If I had a credit card, I would contact your state lyme support group and learn about LLMD's in your state.
And go to that LLMD to get help. It is such a relief to see a doctor who actually knows what he or she is doing and can help.
I assume you know that lyme is a clinical dx and testing is inadequate with Igenex being the better lab to use.
So, looks like this doc is not going to be helpful with lyme and commpany.
But, hoping he or she can help you in some other way.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Meloctober, it is sad when you want your life back and you just can't seem to find it. You will find yourself a different person on the other side of this experience.
Going to LLMD is going to give you more hope. But even with this you will need to learn and live the word PATIENCE.
Of my, was that ever tough for me. But it did happen.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
KAM gave you good advice about this particular doctor. It doesn't sound like he will really address the whole problem like a real LLMD who follows ILADS guidelines would do.
Here is a link to the ILADS treatment guidelines. Keep in mind they are really written for medical professionals, so it may be too much to process at this point.
Depression is common with this illness. It can be a symptom, and it also often rears its ugly head during treatment. Many of us rely on antidepressants when depression seems too overtake our lives. They can really help during those times.
I found that finally getting a Lyme diagnosis gave me hope for the first time in years as my health had been steadily declining for many years, to the point I was, and still am, unable to work.
Here are a couple of good links you might want to check out:
Suggestions for When You Need Treatment and Funds Are Low
Dr. B's Treatment Guidelines will also give you tons of valuable info. I have a copy saved on my computer for easy access.
The table of contents will help you easily get to the specific info you are looking for, but I would suggest going through it all, perhaps in more than one sitting.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Sorry how you're feeling and the struggles you are going through. I hate it when that happens too. Sometimes it can feel like a big black hole.
But there is a light--not only at the end of the tunnel, but along the way.
It's hard. Some days you just have to take it minute by minute.
You are doing a good thing by staying in touch with people who understand what you are going through (ie: Lymenet) who can encourage you along the way.
Don't ever give up. Tomorrow may be your turning point day.
Posts: 2188 | From Oklahoma | Registered: May 2008
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posted
"Don't ever give up. Tomorrow may be your turning point day."
This is a wonderful thought! Something to hold on to!
-------------------- Never, Never, Never give up! Posts: 395 | From Connecticut | Registered: Nov 2008
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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
Now, now...it will all get better with time.
I remember being in St.John, and looking at a beautifule sunset, and wondering, why am I crying, when such a beautiful sight is before my eyes?
Hon, that was a long time ago, and that has passed. Believe, no matter what, and use what ever strength you have to keep you fighting.
Trust me and others on here...it does get easier!
Never, never give up! It does get better! Please trust on this. We are here for you!
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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posted
I know how you feel darling, It's incredibly frustrating day to day and depression is a huge part of the illness. I started seeing a Lyme friendly psychiatrist which I highly recommend doing.
I am a firm believer that knowing is more than half the battle. I know that my feelings are often intrusive, repetitive,encompassing and erratic. Luckily enough, I can identify that it's the disease that is making me feel that way and that the feeling isn't "real" and that it will pass. Although at all times this does not help me keep my head in check but it certainly does help. Lyme disease is a long journey but medical science is advancing exponentially so there is hope. Lyme awareness and post lyme syndrome awareness is also spreading. There will be a cure. if you ever need to someone to talk to feel free to e-mail me [email protected] . My site also has a lot of information and links about co-infections and tests for them.
Many resistant Lyme cases actually suffer from Co-Mycoplasma infections that make treatment difficult. many antibiotics target the bacteria's ability to create a cell wall and mycoplasma infections do not have cell walls, this makes it difficult to cure.
In my lowest of times I feel like I'm 20 years old and Lyme disease stole my life and many of my dreams from me. Diagnosed originally in 2007 at age 18, my current LLMD thinks I may have had lyme disease for 8-10 years before diagnosis. Although I am still being treated a lot of the damage is to my body is irreversible.
posted
So sorry that you are feeling so low. I guess we all know what that is like!
After 21+ years of this, I can give a little insight. Try to get your daily life down to 5 minute intervals and then focus on that time and see how you can improve it. Take a bath, go for a walk (if you can), watch a happy movie (I watch MASH episodes over and over...I know the scripts by heart!) drink a tall glass of iced tea... Make a list of these things and refer to it when you are crying. Keep adding to it. This is the time to spoil yourself...and you can do it! Let others help you by telling them what they can do for you. Little things...they mean a lot.
Keep a daily journal. Draw pictures in it of things you love, your dreams, your feelings (and they needn't be pretty...just true). My old journals are hard for me to read. But I'm glad I wrote them.
Put up pictures of your loved ones, of beautiful scenes and look at them often. Remember how important you are to them. Think about what you will do when you are better. And realize that you will come out of this a much better person, believe me.
My daughter nearly died from ulcerative colitis. When they wheeled her into the operating room to remove her colon she looked up at me and whispered "Mom, you showed me how to be courageous. I'm not afraid."
Crying is definitely part of this experience. I think the meds make us more emotional. It is called "situational depression" and is gone when you feel better.
Follow Kam's advice about finding the right doctor. I pay a lot for mine. But I only see him every three months and I see a pain doc (who takes insurance) in between times. And my doc is always available by phone for help...I get lots of free support from his office. Both doctors are on board with my protocol.
I also see a psychiatrist a few times a year and she, too, is on board. She prescribed Lamictal for mood swings and Resperidone for anxiety. Both those meds help a lot with the depression.
Keep us posted on how you are. There is lots of support for you right here! You can PM me if you want to talk.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
This is a lot of good advise for coping right now, these are people who have ben through what you are going throuh.
I've been there myself, thinking I would never get better, the depression, the pain, the cognitive disfunction.
But on the bright side...I was in remission for 6 YEARS! And those were great six years. I've just started to relapse and am looking for an LLMD closer to home. In those six years, I got married, had a baby (I didn't carry for fear of transmitting the disease, but it truly didn't matter how he came into th world), and even lived for a couple of years in the beautiful caribbean.
The Lyme in a way is much easier to hamdle mentally, because I have the experience o coming out the other side and having a good life. Sometimes it's scary because I have a family now.
Posts: 3 | From Abingdon, VA | Registered: Dec 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Sent melocotober a PM regarding the replies to the thread....just in case
Noticed meloctober has not been back I think
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I had a HUGE meltdown just before Christmas. I was crying and shaking in my stepson's arms and saying over and over "I'm scared" and I didn't know why. Never had such a bad panick attack. I feel for you! It's scary what that stupid bacteria can do to us!
I recommended the Fibromyalgia and Fatigue Center (they have centers all over the country) to one person in Colorado just because the particular doctor I see there diagnosed Lyme (even though I said there was NO WAY I was ever bitten by a tick!) and is aggressively treating it. I don't know if all the doctors at all the F&F centers are so Lyme-literate, but she certainly is. The good thing about them is that they test you for viruses and bacteria as a matter of course, and that's how she found Lyme. I'm hesitant to recommend a group of clinics because I know doctors can vary widely, but I do highly recommend my particular doctor in Colorado at the F&F clinic.
Posts: 39 | From Colorado | Registered: Dec 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Sorry I did not read all these post.
Lyme Disease is a clinical diagnosis, so you have to find a LLMD who will treat you according to your symptoms and not determined by a test.
Also I can totally relate to your emotional state. I have my ups and downs just like you describe. Even after 20 months of treatment, I have days where I feel doom and sadness and frustration.
It has taken me this long to finally begin to learn about patience, which is what has to be where LD is concerned.
You can get well; but you have to find a LLMD, one that knows that LD is a clinical diagnosis.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thankyou Thankyou Thankyou for your posts of support and positivity...you dont know how much it means to me and helps me..today was a better day, trying to keep busy. I will let you all know how my doctor's apt goes next week.
Thank you again..so much
Posts: 29 | From CT | Registered: Sep 2009
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