Topic: Has Anyone Else Ever felt You Dont Have Lyme?
BostonLyme2005
Unregistered
posted
Hi,
sometimes I feel like I dont have lyme disease.
Why?
Should I have had better results?
Am I thinking too much?
Three more months of Tetra on deck, then on to Biaxin for 6-7 months I guess.
I rec'd a package from Igenex fro co-infects, what tests should I ask for?
Can this be done at Bowen, or another place that will take my ins? Tufts!
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
My observation....you do think too much.... That coming from someone who also thinks too much.... Relax. You are not helping your healing process.
As for having better tests, I have had similar frustrations that the tests are unclear, often inderterminate, etc.
As for coinfections, you should get Bartonella serology, Babesia serology, Ehrlichia and Anaplasma Serology. I don't think PCR is useful once you have been chronic and already have been treating. The odds are pretty low of getting a positive.
As for Bowen, they are not covered by insurance as they are not a CLIA lab. Igenex is the place to do it and then file yourself.
posted
In the world we live in having lyme disease requires a complete paradigm shift in thinking.
Most illnesses and their treatment are driven by diagnostic tests and are physician directed. Lyme disease in the absence of a bulls eye and successful early treatment is different. It is symptom driven and patient directed.
This means the responsibility is on the lyme patient to correctly articulate their symptoms and track them during abx treatment to determine it's course and length of therapy.
We are all uncomfortable being in the drivers seat particularly with such a devastating illness. But to get better we must get comfortable...with medical terminology, with being assertive about our needs, and with putting our healing ahead of all things in our life.
That means when someone in our life (who matters to us) doesn't get lyme or think we have it. We need to tell them very directly the horror of our illness and let them know that unless they are prepared to be part of the healing, they will need to step aside while you surround yourself with people who will.
For me, having lyme disease has provided such clarity around my desire to be healthy and happy. I have shed the superficiality of the past. I don't care what people who do not love me think in the least....
I am a warrior!!!! (And now I must rest... )
-------------------- We are spiritual beings on a human journey...
It is very frustrating.
Posts: 582 | From milwaukee wi | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Humanbeing: well said! Spoken like a true warrior!
This lyme is a real beast. The tests are iffy. the treatment is iffy. This beast has ways of replicating that make my skin crawl.
There are days where I talk myself out of it. like: "this could not possibly be happening to me." "Like this is not how I thought my life would turn out."
There are MANY days that friends and family say "You look and sound so Good" And then I ask myself. Is it all in my head or could I be imaging this?
And the answer ,if I look straight into the face of the reality of my life... I say "NO WAY" ' I HAVE LYME and there is just no way around it.
I can sit and think maybe I wish I had something else or I can go forward and keep taking what I have to to get better.
Hang in there. It takes time. we are young. Time we have
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Always thought I had lyme and nothing else
What else would I rather have? MS, Lupus, or some other disease that until very recently was only managed.
I always felt that with lyme I had a shot at getting better because we know it is a bacterial infection and abx and other methods kill bacteria eventually.
You need to have hope and a lot of patience. I felt pretty good when I started abx and was also surprised at how bad I felt for a while during treatment and how long it takes to get well.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I too have had my doubts at times. For me, it was because of the RA diagnosis which just threw me for a loop.
I believe the Lyme is the start of it all. It weakens the immune system which then allows other bacteria and fungus to thrive.
I'm currently treating candida with a very strict vegan diet and 50mg diflucan daily. My joint pain which had dropped from a 95% cure to about 60% has now improved to 95% again.
I believe I developed Leaky Gut Syndrome from 5 mths of Advil daily (only 2 or 4 at most). Once the gut started to leak undigested food, the joints began to swell and deform overnight and the RA diagnosis resulted. The diet had immediate effect.
The diflucan caused one of my most painful herxes initially when I was taking 100mg per day, so I have cut back to 50% and today enjoyed my best day yet. The pain was in my joints and felt like you had me hooked to electrodes and was giving me full power. It told me in no uncertain terms that I had a yeast problem and it was in my joints.
I am also taking 100mg Minocin on MWF which is a protocol for RA. It targets mycoplasma. It is supposed to be a very safe dose that somehow supports and encourages the immune system. Also, at this dose it should not cause yeast infection.
I have read that Candida (yeast) when systemic can cause incredible problems including brain fog, joint pain and swelling.
So, yes, I have had many occasions where I wondered exactly which bacteria/fungus I was really fighting. I believe Lyme starts it, but other things can then develop.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey there,
You are a lot like me too. constantly thinking trying to figure out if it is Lyme.
I still have doubts. I took 5 days of my abx and im not herxing...i didnt herx on flagyl either. So now im like what the heck do i have. Diflucan makes me better, do i have yeast.
Then i get to thinking it is cancer, ive lost a lot of wait and look like a skeleton.
Then i stop myself and say, Im not going to figure this one out. What im going to do is trust my LLMD and follow his lead.
For the first time during treatment I am not afraid of the herx, not afraid of the abx. And I trust my LLMD.
And after years of not being able to swallow pills I can now swallow them.......why? because i put fear aside and I am determined to win this battle. I am fearless.
The mind is a very powerful thing.
Today I bought a t-shirt that says 'it is all about me' pre lyme i never would have worn anything like it...but the statement is so true today.
Anyway, to answer your question, yes...I often wonder if i have lyme.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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My husband goes through this more then I have. I have had some herxes that landed me in the ER - stroke like stuff. Scary...but followed the herxheimer description to a T. So that has helped me accept my diagnosis.
My husband hasn't herxed like me and he has a harder time accepting it despite positive test results.
I think the more I learn the more I realize how little we really know about a lot of stuff. It just isn't real comforting dealing with a disease that is still such a mystery.
Hang in there and take it one day at a time. It takes time to heal so just keep reassessing as you go.
It is good that you are questioning though I think. Listen to your gut. Right now I think your brain is doing a lot of thinking...try to quiet that and listen to your gut instincts and see what they say...
Take care...
Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Rob, I think and wonder that too sometimes, whether my husband truly has Lyme. But then I remember his high ++++ on #31 band, and realize that he does. The LLMD questioned whether hubby had been vaccinated with the old Lyme vaccine. (which I had never heard of before this adventure in our lives)
It's been so difficult...much harder than I expected. I was so relieved to hear my husband had Lyme, rather than Alzheimer's. yes, we can treat this!
I still wonder sometimes, if it could be ALS, or MS. I wonder if I'm taking him down the wrong road. But we had all the tests done, brain scans, nuclear scans, etc. Nothing showed up. No lesions on the brain, etc.
And the fact is, husband has had herxes, which tells me we are on the right road.
I understand your thoughts, especially with the response from the medical community. It causes you to have doubt, and question whether it could be something else.
But, if you're herxing, you have some type of bacterial infection......
Best of luck to you.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
I think it is normal for people to doubt the Lyme diagnosis especially if the tests were not 100% conclusive. I have doubted it as well and have had positives on every single test at one time or another.
Posts: 649 | From United States | Registered: Dec 2003
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posted
I have tried many times to quantify, and qualify what lyme and the co's have done to me in a short span of one year.
I can tell from what I have read Mr Tick from hell had some mighty darn virulent strains on it. I wound up in a psychiatric admission at the end of December. I didn't sleep for four straight months. Seriously, the most I slept in a week's time during that 4 months ( we are talking in a 168 hour period of time) three hours no naps!
Add all the skin numbness , eyes demylinating and losing vision- optic nerve neuritis. I would have thought that since I was a registered nurse with a very extensive education- people would believe you. Or help make you "credible".
Think again, my friends, no way. Lyme is so complex , no one can comprehend it unless you have lyme. I sincerely think that until I am completely bedridden, numb, blind, and continue to have swallowing problems- no one is fully going to comprehend everything it has done to me.I wonder how many people comprehend all of us lyme suffers.
I do not know what is worse- fighting with all of what precious little strength, and body that you have left to fight the diseases or making people believe you.
When my second pic line was in ( Oct 05) the occupational therapist that came to the home for a few weeks- deemed me uncooperative and told me -it was my business that I didn't want to try, but I had no business dragging my parents down with me!
Seriously, I looked at this woman and thought I had a great life. I was a nurse. I had a beautiful apt, a nice car, things I worked hard for, athletics. I traveled with my skating. I took the train from Philly to NYC all the time to see Broadway and the TV shows. I shopped. I drove a car. I ate out. I took adult ed classes.I loved life. I was normal.
I looked at this person again and thought: " how in God's Green earth, can anyone think with that type of life- I would chose this or be like this -2. or deliberatly lose everything that I worked precious hard for. Complete disability now.
I hold on and try to fight each day: It is a good day if I make it out of bed by lunchtime and able to feed myself and get dressed.
Perhaps, there will be a day when people comprehend our nightmarish lives. Perhaps then, people will get so scared that they might actually do something to get rid of ticks, support lyme disease legislation, research and treatments.
I don't think that day is anytime close. I continue to battle on for what little quality of life I have. And hope. And participate in the on line flashes here, where I have made friends, try to share what little information I have.
Then I hope, fight some more, and be thankful for this board and the friendship here.
I try to stay very objective and fact stating to medical professionals- limited emotions. The Joe Friday " just state the facts ma'am" approach- my visual fields were so bad this week- that everyone sat up and went " Holy Toledo". All of the things I have been trying for months to tell people. I do resist the " hah, hah, I told you so" feeling. It won't help the situation. Why , oh, why does it have to get so bad before you are believed?
My post is way too long. Sorry. You get my drift. Thanks for letting me vent.
Posts: 719 | From Delaware | Registered: Jan 2006
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Boston,
I don't post on here as often as I used to...used to REALLY post ALOT....knew EVERYBODY>
Lately...not so much....
so I get on here about twice a week...short periods.
I will say that my impression of you, based on the fact the fact that your stream 'headlines' were DENIAL...DENIAL...DENIAL...is exactly this;
You think too much....focus is your friend at this point....not tangents.
It always helped me to get grounded when I just embraced my diagnosis and then went from there.
You should too...all this self doubt is VERY bad for you.
Trout
PS>>>>>>>>the first thing I tell newbies is this....FOCUS!
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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I too doubt my Lyme diagnosis daily. I don't think it is the Lyme as much as the total decimation of the person I was and hopefully will be again.
It is clear to me that you have neuro Lyme. So if you need to think out loud here go ahead and do it. We are here to support each other.
Hang in there you'll make it. It is clear that you are as frightened as the rest of us. Accepting this is true is beyond our comprehension at times.
I enjoy your posts. It gives me comfort to know my racing panicked mind is not alone.
No one here can give you 100% accurate answers; neither can your doctors or family members. We are in this alone. As much as we would like support from them there are no answers any of them can provide.
So just know you have us.
Take care and peace.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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BostonLyme2005
Unregistered
posted
Thanks...
I need all the comfort I can get as well and reading kind words sure does help!
I am living alone so that sucks when you have Lyme, just me and the Ghosts, and they dont even want to be near me!
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Rob,
I'm sorry you are alone. Many times I have wondered how I could have gotten by without the help of my husband.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Thats rough Rob - living alone with this da** disease.
There must be a Lyme support group in your area. Lord knows there are a lot of people in the Boston Area with this.
I lived in Groton, MA for four years before we moved 2 years ago to NC where I became extremely ill.
I look back on it and think about a lot of my friends up there with some of their health conditions and I wonder if it wasn't Lyme.
I worked in a store at one point and I remember a woman coming in after her walk. She had a tick on her sock and she freaked out and slung it into oblivian. We never found the tick...
I remember thinking "I don't like ticks but that sure seemed like an exreme reaction" - If I only knew then what I know now...
Anyway, I would find a support group. I know a lot of people don't like support groups - hopefully there is one up there that is optimistic and proactive and not just a downer fest.
Take care!!!!
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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