Learning about Lyme, this is consuming me...is this pretty normal in the beginning stage?

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kwicherbichen
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Date Joined Jan 2010
Total Posts : 10
   Posted 1/16/2010 11:47 PM (GMT -7)   
I can't stop googling!  And all of these new terms and tests, treatments.  All so overwhelming.  My doctor admits he doesn't know anything about Lyme, so I feel I have to educate myself.  How do I assure my family I am not overdoing it, they seem concerned, and I seem motivated to get to the bottom of this.  Agh!

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 1/17/2010 7:42 AM (GMT -7)   
kwicherbichen,

Btw, I feel a little weird typing out your name, lol. YES, get yourself educated. YOU are your only advocate. let your family know that there is a lot of information about this disease. It can feel overwhelming at first because there is so much information but you will begin to understand everything soon.

Have you been tested by Igenex yet? I can help you get started on things you need to do now.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


achievinggrace
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Date Joined Nov 2009
Total Posts : 3266
   Posted 1/17/2010 8:35 AM (GMT -7)   
It's really important to inform yourself. That's how you arm yourself for this big fight. Also, the more you know, the more you can explain to your family and friends so that they can understand. At some point you will want to give it a rest. Partly because you can get a little obsessive, and partly because it can get a little frightening.

I go through periods of research and then step away from it. There's so much information out there, and so many new ideas it is really worth keeping yourself up to date -- just don't panic!

Traveler
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Date Joined May 2007
Total Posts : 35859
   Posted 1/17/2010 9:15 AM (GMT -7)   
Hi 'Kwicher'!!
Welcome!! I'm sure you will find a lot of info here on HW & friendly people who want to help!!!!
I am so sorry you have need for a Lyme board, but you have come to a good one!! I look forward to getting to know you!!!

Unfortunately, you will most likely need to be able to help your doc understand!!!!! Unless, of course, you find a very knowledgable LLMD or other Lyme Specialist.

I have discovered that if I get too entrenched in everything Lyme, it does scare my family somewhat. So, I pull away from Lyme boards & my own little research reading every so often & just go out & live my life to the best of my ability, depending on how horrible I feel each day.

There are a lot of 'snake oil' type remedies out there as well - that's part of the reason for educating yourself as well. Our bodies are already functioning at low levels- so to be putting useless or even harmful things into them is just not something that we can take very much of!!

Trav
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


pepphell
Regular Member


Date Joined Jan 2010
Total Posts : 134
   Posted 1/18/2010 12:09 PM (GMT -7)   
kwicherbichen,

I can say when I got diagnosed for lyme, i did not even know what lyme stands for. But then I got obsessive with it, read a lot and realized it's scary. The disease is very scary. But don't let that bother you. Each of us are different and the disease will behave different for each of us. Among the overwhelming amount of information that is out there you need to know few basic things:

a) Do not panic - I know its much easier said that done, cuz I panicked like crazy, but really you are not helping your immune system or anything else by panicking. So stop panicking.
b) Find a good LLMD, until you do that, chances of getting proper treatment is going to be rare. This is the best piece of advice anyone can ever give you. If you do not have an LLMD helping you, chances of getting misdiagnosed and having the infection stay in you is probable. I've decided to borrow up to 100k to get the best LLMD to treat me. For instance, my rhuematologists, give me doxy and says its the right medicine, and say if this doesn't work there are things they can do like analyze using PCR tests etc. But they don't understand I have sleep disorder, getting too much or not getting any sleep. They dont get it when I say, I have itching, massive twiching (including eye) and neuro musculoskeletan problem. They don't understand the significance of eating probotics when on Antibiotics. All of this only a LLMD will help you with so do yourself a favor, and get one LLMD.
c) Have faith - while a lot of us continue to suffer from this disease, a lot of have got better as well.
d) Be preemptive. Certain things are bad for health, you know (alcohol, smoking etc) so stop immediately. And certain things are bad for health when you have lyme, such as sugar, etc. Certain things are further bad, when you are on antibiotics, such as yeast. So start taking care of yourself to the best of your knowledge, discuss it with your LLMD, and this is where you have to put your research in.
e) Lastly get some emotional support. I was miserable a couple of days back. But I realized in the worst case scenario there is always a plan, get working on it bit by bit. I went out today after locking myself in 2 days and I am feeling better. Put things in perspective. I'll tell you, and let others tell you the disease is scary, but be strong and fight it.

-----
First say to yourself what you would be; and then do what you have to do.
Epictetus

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 1/18/2010 2:50 PM (GMT -7)   
I have researched and researched and researched and I believed have helped myself tremendously. As a matter of fact, I just kept going from dr. to dr. adn suggesting things before we finally got a diagnosis. You cannot ask too many questions. Since each human body is different, there is no way for a doctor to know everything he or she can about your body and your disease. You have to research your symptoms and tell them what you think may help. If they don't listen, move on.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 1/20/2010 6:28 PM (GMT -7)   
I live 500 miles from the nearest LLMD and my doctor knows much less about lyme disease than I do. If you are anywhere close to an LLMD I would encourage you to go to one because that is the fastest way to get well. I also HAD to research and prepare my treatment plan, then present it to the GP treating me. I did a pretty good job on my lyme treatment, thanks to Dr. Burrascano's treatment protocol provided by some really nice people online - but I missed the bartonella until a year later when I finally traveled that 1000 miles round trip to see the LLMD. I am back to treating myself as it is impossible to make such long trips. I consult with the GP but it is my research that is determining which drugs I will use. I plan to go to another LLMD if I cannot get this under control soon. I would encourage you to make a log of your symptoms and treatment so you know how it is working for you. Also keep notes of what you read that you do not want to forget, because with lyme you will forget darn near everything! There are some great books to read like Cure Unknown, my favorite, and The Lyme Disease Solution, which I just got.
But the best thing you can do for yourself is to put yourself in good hands so that you do not have to worry about your treatment plan. You know you have an expert taking care of you. Take your husband or a friend in for your office visit to help you remember what you were told. I would also advise you to chose an LLMD that makes the diagnosis on symptoms rather than tests. Tests can be very inaccurate.

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 1/21/2010 7:44 AM (GMT -7)   
I recall when I was dx with lupus and I knew it was more than that I read about lyme. I came to HW and googled everything under the sun. Spoke to anyone I could who had lyme to see what they knew. I became my own LLMD and knew more about lyme than my own LLMD did.

I did become obessed, which was a double edge sword since it made me knowledgable, but also made me crazy/obsessed to the point that my nose would run and I would accuse lyme.

My advice, get ALL the info you can, research and learn but don't obsessed. Obsession keeps you stuck in this (or any) illness.

HW was a saving grace for me though and I also need to add, this journey brought me to start taking courses in natural healing to help myself and I'm now a 2nd year naturopathic student. So the obsession wasn't all crazy :-)

good luck

Jen

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/21/2010 2:43 PM (GMT -7)   
kwicherbichen said...
I can't stop googling! And all of these new terms and tests, treatments. All so overwhelming. My doctor admits he doesn't know anything about Lyme, so I feel I have to educate myself. How do I assure my family I am not overdoing it, they seem concerned, and I seem motivated to get to the bottom of this. Agh!


kwich, I totally know what you mean.

I've been frantically googling so many different diseases and treatments for the past two years I'm really just sick of reading medical articles, watching videos, etc., etc. My head feels like it's going to explode from all the information!

But in the end, it seems to be worth it when (for example) I end up in the ER and can speak intelligently about my various conditions. I can even advocate for myself if I'm admitted to the hospital (as happened last week) and have to be examined by all these doctors that know absolutely nothing about me.

In the case of Lyme disease, because it is so incredibly controversial, and it's such a nasty, complex disease with all of the associated co-infections and everything, you absolutely HAVE to do a lot of reading on the Internet!!

You have to be able to choose between the various treatment protocols, and to be able to follow your chosen protocol correctly with the best chance of success. For example I'm on doxy right now, but I want to take colloidal silver too. I had to google to find out if I CAN take colloidal silver with doxy (I can, but apparently must separate the doses by sufficient time interval so they don't interact).

There are just so many questions at first....please reassure your family that this is normal, and after a while you won't need to be doing so much research on the Internet.

Best wishes,
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

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autoimmunediseasesgfliving.blogspot.com


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 1/21/2010 10:02 PM (GMT -7)   
kwicherbichen --- YES, what you are doing is normal! Well.... now that I know that what I was doing for MONTHS is what you feel compelled to do. On my days off work, I would sit at this computer for entire DAYS, researching the Western Blot, spirochetes, syphillis, symptoms, cures, other lab work, Drs, etc etc etc.

I am not completely well -- actually, it feels like my symptoms are returning after several months of relief. But a lot of the OBSESSION is now relieved, too.

If you are feeling compelled to research, then you should do that. There is a reason for this obsession.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

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