posted
Ok, I guess I am not totally convinced that I have Lyme. Maybe I still want to believe that my regular doctor will take over where the NP left off and find something else wrong with me. Maybe I want to believe that this one round of abx is going to make me "all better" like they usually do for other illnesses. Maybe I am just in major DENIAL!? All I know is that I am scared, confused and want answers. I posted a positive post on the forum today about having a better day and got little response. Is it because I am being fooled by myself into thinking I could possibly actually BE better? PLEASE, be frank with me ... is there a chance that I'm going to be ok and not have all the awful things that most of you have? Could my labe results actually BE right? I need TRUTH here ... PLEASE!!!
[ 07-04-2010, 10:34 PM: Message edited by: TN Kim ]
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by TN Kim: I posted a positive post on the forum today about having a better day and got little response.
Some people don't respond much when they feel like crap. You're going to have good days and bad days.
Continue to take things that reduce inflammation and that support the liver. Those are helpful to reduce the Lyme symptoms.
Also, support the immune system by getting enough sleep and eating well.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I know how you feel. I was ill 2 years before getting a lyme diagnosis. That was 2 years and 2 months ago.
Whatever you do, don't put any stock in the test you had. Lyme Disease IS a "clinical" diagnosis. And the Elisa test is for sure a complete waste of money and time.
Here's what I did....... don't make the same mistake! At first when I finally got my lyme diagnosis......a "clinical" diagnosis; I convinced myself that I would be well within 6 months. Then it didn't happen. I set myself up for disappointment. Next I convinced myself that FOR SURE I would be well in the next 6 months. Huge disappointment again. This was one year into treatment and I at least at this point did get an IGM CDC positive on my Western Blot. This was after one pointless Elisa.....done of course by my PCP; and after a WB with just one band positive. Finally something to back up the clinical diagnosis; but only after one year of treatment.
So let go of getting answers from a test. You will finally relax when you believe the TRUTH.....that LD is a clinical diagnosis. That is the trust that you are asking for!
Back to my story......Over the next year.....2nd year of treatment, around 22 months of treatment, I began to notice some slight improvement.
By this time I had developed a mood disorder triggered by LD. Now I am taking a mood stabilizer, which has really helped me deal with the physical side of the illness.
I have seen even more improvement the last couple of months of treatment. So my point is don't let yourself get caught up in setting yourself up for disappointment. That puts you on a huge rollar coaster ride. Denial will get you no where! Depending on a test result will get you nowhere!
Your regular doctor will never take over where the NP left off. You have to have a LLMD for lyme disease.....just like you have to have a cancer doctor for cancer.
Don't expect too many answers either when it comes to LD. LD is a bizarre illness and there are many unanswered questions. No one has all the answers!
Yes there is a possibility that you will not have all the awful things that most of us have. Many ppl get well faster than most of us here on LN, thats why they are not here anymore; or why they were never here on LN.
When you say you are scared, confused and want answers, you are defintely not alone. We have all been there.
Its only when you accept that you will never know all the answers, that you can deal with LD.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
You posted previously that you had an appointment with an LLMD. Keep that appointment and go from there!!! You CANNOT get well being diagnosed and treated by your regular doctor!
I'm sorry you're scared and confused. Welcome to the club. We've all been scared and confused.
Sutherngrl gave you tons of good advice and support. Print her post and read it every day.
You are on the right path. Take a few deep breaths and stay on it.
The reason so few people responded to your positive post is the holiday. The boards have been slow all day. This delights me. We are trying to have lives outside of Lyme!!
This gets easier. Once you are in treatment, you mostly just follow your program and take care of yourself. For some people, treatment is not too bad and they consistently improve. You could get lucky in that department.
Stay the course, TN Kim. Personally, I think the denial phase is a natural reaction to an uncertain future. I also think it's partly driven by the spirochetes themselves. These are smart critters! Be smarter than they are and get into treatment!
posted
Thank you for your responses. First of all, I do not want to come across as disrespectful or insensitive to anyone here!
Can you all remember when you first became ill? Surely you had some of the same thoughts and feelings as I am having. I've already had some of what I consider to be "awful things" happen to me and it terrifies me to learn what else I might have to endure.
This disease is scary .... most illnesses have a limited and very specific set of symptoms ... it seems with Lyme that the symptoms are endless! I'm just trying to take this all in.
From what I am "hearing" ... you all are pretty certain that I do indeed have Lyme. I would say the same just based on the array of symptoms that I have had and the same things being documented right here just on this site!
I just cannot understand why in the world this hasn't all been supported by the medical world as a whole. I know, I know ... I'm beating a dead horse!
I'm sorry but please keep in mind that this is all BRAND NEW to me! Until about a week ago, I had no idea that Lyme even existed other than hearing the name.
I'm wondering just what my PCP is going to say when I confront her with all of this on Tuesday. She has always been very good about ordering any tests or referring me to any type of specialist I have ever needed or requested.
She may even be very receptive to my upcoming appt. with the LLMD that I've scheduled with. If nothing else, just to get me off her back!
Please be patient with me ... I need friends here desperately!
posted
I think everyone who just replied to you was very patient. They were just being frank with you like you asked.
Try to relax until you get in to see the LLMD. I know it's tough. We've been where you are.
Take it one day at a time. You won't really know what's going on until you get your Igenex results and your appointment is behind you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Kim -
You have friends here. We're all here to help each other.
Your response is completely normal. I cried for 90 days after my diagnosis. I considered not treating. I was an emotional basket case.
We just want to make sure you don't go into denial and delay your treatment. It would be a huge mistake.
Have an open mind when you talk to your PCP about you upcoming appointment with the LLMD. Some docs don't believe Lyme is anything other than a rare, arthritic disease, easily treated with 30 days of Doxycycline. She may feel she is protecting you by keeping you from going to one of those "Lyme doctors."
IgG � Igenex Positive; CDC/NYS Negative with 31+; 39 (IND); 41++; 58+ Posts: 339 | From Tennessee | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Kim,
You said we all seem pretty sure you have lyme. I don't think that's exactly it but we think your symptoms and timing with bite strongly indicate that you need an real expert's assessment. Only an ILADS-educated LLMD can do this.
That, we are certain of, due to our failed attempts with illiterate doctors.
You also said: " . . .I just cannot understand why in the world this hasn't all been supported by the medical world as a whole." (end quote)
Yes, that is really criminal, actually. But when you talk about insurance and the old boys' network of the IDSA, it becomes clearer.
There are many articles about that. Be sure to go back over your past threads, one by one and read some of the links. It's all explained there.
Insurance companies do not want to cover treatment and have pressured doctors with the IDSA, etc.
See the "Controversy" article, especially.
Then, clink onto the ILADS links and see the real research. You might save those sets of links to your computer file for easy reference.
To go back to your prior threads, just clink onto your name and you can see posting history.
This is a lot to take in so just take a breath and read as you can.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I know exactly what you are going through. I had always believed in the medical establishment. I was unsure who to believe, the medical establishment, or this small group of people with Lymes and this even smaller group of doctors who treat them with massive doses of ABX.
The facts are that there ARE people who get lymes, have mild symptoms which resolve in a few months without treatment. Then there are those who suffer for years, or even die from it. Most people fall somewhere in the middle. Anyone who tells you that you will not get better with a few months of ABX is as guilty of the same wrong-headedness as the doctors who claim that Lymes is always simple to treat. There are different strains of lymes, different levels of infection, and different immune systems.
For someone who just gets Lymes disease, this whole thing can be very scary and confusing. For me, my diagnosis came more from a process of elimintion (very costly) than anything else.
I was not convinced that I had lymes either, the test was negative but I had all the symptoms and a very high exposure. I suspected lymes but was unsure and I continue to be somewhat unsure. One thing I know is that I have made progress with ABX, and every other test comes back negative or normal.
For months I tortured myself with 'what if its cancer' or what if its this, or that. I would then go out and order a bunch of tests to eliminate all my fears. I never had a positive test (accept for a low-level presence of babesia), never saw a tick or a 'bulls-eye rash'.
All I really know for sure is that something happended to me, the symptoms are very consistent with lymes disease, and that I seem to be improving with ABX. At this point, with all the ABX treatment, I don't think I will test positve for lymes on any test so I won't waste my money.
Like people say, Lymes is a clinical diagnosis. I have to trust the evidence and my doctor. This all makes me very unsure, and the worst part of my whole experience has been the doubt, and the lack of any conclusive proof that I even have this.
....anyway, i just want to let you know that you are not alone.
Posts: 41 | From astoria, new york | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Top places to learn more: -------------------------
Researcher Eva Sapi has some fascinating observations. It's not just the spirochete: Borrelia b. has many forms and, within those, dozens more. --------------
-- This video is a 10 minute clip, part of a 70 minute interview with Dr. Sapi from the University of New Haven.
She is credited with being the first researcher to demonstrate that Lyme spirochetes can actually create their own complex biofilm community to survive indefinitely within their hosts; both human and animal. In May, the full transcript will be made available on the biofilmcommunity.org web site (See Expert Interview section)
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
I got sick over a year ago. I found the tick and suspected Lyme right away. I only delayed going to the doctor or realizing that I had Lyme because my previous information about Lyme was wrong.
I mistakenly thought you couldn't get it without a bullseye rash (which I didn't have), that the tiny deer tick nymph I pulled off of me was not engorged (hadn't seen one that small before), and that a couple of months of antibiotics would easily get rid of Lyme if I did have it. I also thought that doctors knew all about it.
Two months after my tick bite, I went to my doctor and asked her if I could have Lyme, and she laughed at me and said of course I don't. (Lyme is extremely rare in my state, don't ya know.)
Then I started reading a lot about it and became convinced that I did have Lyme. Two more doctor visits later, and my doctor stopped laughing and I had antibiotics for 3 months (after I showed her some persuasive research to convince her to extend her prescription that long).
She still doubted I had Lyme, and tried to convince me not to go to the LLMD because it sounded "shady" to her. She did this with my best interests at heart, but she was wrong.
My symptoms were mild enough from the beginning that for the first two months, I explained them all away and thought they were unrelated, so I didn't even know for sure that I was sick until 2 months went by.
When I realized that it was Lyme, then I thought that I must have a mild case because my symptoms are not as bad as many people's I have read about on here. I thought mild symptoms meant it would be easy to eradicate.
I also thought that it would be easy to get better because I started treatment within 10 weeks instead of years.
I didn't know that "early" treatment that has a high chance of rapid success meant within days of the tick bite, not weeks or months.
The biggest reason I was convinced I would be better within a couple of months is because I could not understand how all the doctors could be so mistaken as to think that a few weeks of antibiotics cured Lyme, unless people usually SEEMED to get better in that time and then relapsed later.
I took my first round of antibiotics for 3 months and only saw some improvement the third month. I was never without symptoms. Then I relapsed immediately 2 days after I stopped taking the drug. Of course I was crushed with frustration and disappointment.
After that I went through several months of terror, fearing that my symptoms would get much worse than they had been and that it would take a long time for me to get well. But I still thought, in the back of my mind, that all this was temporary and would be over soon.
I hesitated to make any major changes in my life because I thought this could all be over in another month or two, and then it would be silly.
It took many months for me to realize that it might take me two or more years to get better, and that in some ways I will have to change my life permanently even when my symptoms are gone.
Now that I have been seeing my LLMD for almost 8 months, I know I am on the right track because I have seen some improvement in the last few months, but here I am more than a year later, still sick. There is progress, but it's slow.
I am less afraid of the chance of worse symptoms because it's been a long time and I haven't gotten them yet. But the symptoms I do have move around and change all the time.
I finally realized that I would be a lot happier to quit feeling angry and frustrated every month or two because I still wasn't better yet, and to quit fearing every change in symptoms as a sign of worsening or unknown coinfections.
I am doing everything I can to get better, and I WILL get better in the end. Now I try to hang onto that faith and not to worry about how long it will take, or what symptoms might come and go before I get there, or what crazy things I have to do in the pursuit of healing.
The accounts I have read suggest that all or almost all Lyme symptoms are completely reversible when the treatment is successful. So for instance, if you have joint pain in a joint, it doesn't mean you will always have arthritis there.
I have had to make changes in my diet, schedule, finances, etc. to accommodate my need to take care of myself, since my life is not going to go right back to the way it was before. I have had to ask for help, and give up a lot of activities.
I felt tremendous relief once I accepted that I would be dealing with this for the foreseeable future, and made plans to do so.
I think that the doubt and fear are normal stages, and you can get through them so you're not stuck there all the time.
Acceptance--that life isn't fair and we're stuck fighting this battle that we don't deserve and have to make the best of--seems to be one key to getting out of the mental swamp of doubt and fear.
Knowledge is another key. The more you learn about this disease, the more you will understand and notice things in your body and experience that reassure you that you are on the right track toward getting better.
You need to learn enough that you can feel certain in yourself even when the people around you, who you normally trust, are telling you that you're wrong and making you doubt yourself. Also hold onto logic and recognize when doctors and others are telling you something that doesn't make logical sense.
Good luck, and I'm sorry that you have had to join our company here.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
LightAtTheEnd ... thank you so much for taking the time to share all that you did. I do appreciate each and everyone here and I feel very thankful and blessed to have others to confide in as I begin this journey! I know what you have said is right and I truly am working to reach the point of acceptance!
posted
Light at the End.. I want to also thank you for taking your time to post that! Well said!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Your lab results probably ARE 'right'... but that does Not mean you Don't have Lyme disease. The standard ELISA/blots tests of today only catch about 1/2 the cases! And This is according to many Lyme experts, not just the ILADS members/ docs.
Watbch 'Under Our Skin'. A Lyme researcher (McDonald, I bleeve) quotes this very statistic.
I'm not saying you Have it. That's the LLMDs call. I'm just saying you should err on the side of caution by trying to get on atleast another 10-14 dayns of doxy while you "wait" to see the LLMD on the 30th.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
yep I recall all my many questions, doubts and concerns.
Thankfully, I had an LLMD who honestly answered them.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
TN Kim,
I started out with the denial stage - even though I had a tick, a bull's eye, and symptoms starting 3 days later.
Then I moved on to depressed stage.
Then to angry stage.
Now I'm in a peaceful stage. I know what's going on, I'm learning, I'm helping as many people as I can. I know I will survive AND flourish and I plan on taking as many people with me (out of the Lyme pit that is) as I possibly can!
And you can too!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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