posted
I am feeling very overwhelmed by this whole journey. There is so much information on this board and I am wondering how everyone manages to figure out what treatment to pursue. Or if you generally just listen to your LLMD and go from there. I�ll give some information about myself.
I was bitten in August 2009 but was told it wasn�t a bug bite, it was an �infection� and given topical antibiotics. I started seeing symptoms about a year after that of babesia and Lyme (although at the time I didn�t know what was wrong with me). My PCP suggested Lyme and although the ELISA was negative I read up online about it and decided to see an LLMD because it was such a good match.
My major symptoms are fatigue, disequilibrium (feeling off-balance), shortness of breath, sleep disturbance, brainfog. I�ve missed about 3 months of work in the past 9 due to this. Fortunately I am a graduate student with a very flexible boss (crappy salary but decent health insurance) and didn�t have to do FMLA or anything.
I saw an LLMD 3 weeks ago and was put on azithromycin, doxycycline and hydroxychloroquine. He also put me on supplements: Vitamins C, D3 & E; fish oil; selenium; iodine; melatonin and probiotics. (Although his recommendation for probiotics seemed vague to me - �just make sure it has acidophilus.�)
He said that for patients that he sees that are at my level of illness, he expects me to be getting worse for six months, then better for six months, and that then my progress will plateau and we�ll begin to pulse the antibiotics. I haven�t gotten worse since starting the antibiotics, I only missed one day of work.
I keep waiting for the big scary herx and am wondering if it won�t come until I start on better antimalarials. His nurse told me that they only see progress with Babesia with Mepron but the doctor himself didn�t discuss Mepron with me.
I am wondering to what extent you guys need to do your own research, be your own advocate, etc. I feel like I should be doing more but I just get so overwhelmed by all the information out there. The information on this board is awesome but is often really vague (�be sure to detox!�) and I have no idea what it means.
Adding to my �overwhelmed� feeling is this PhD that I am trying to wrap up and a divorce with a not-very-cooperative spouse. I worry about money and my future although I try not to worry too much. Whenever my divorce goes through I will get a chunk of money that we were saving to pay off our student loans (yes I am an idiot for letting my husband completely control the finances but we won�t get into that). Of course then the loans will become a problem.
Sorry this is morphing into a "general support" post. Thanks for reading.
EDIT: I forgot to mention my doctor also put me on a strict diet. As little starches and grains as I can manage, lots of veggies, low-glycemic index fruit, healthy fats, zero sugar. I have done pretty well adhering to this but it's a big change. I am supposed to be exercising every day but haven't really been doing that. I'm spending most of my energy and "functional" time trying to do enough work that my boss will be inclined to continue to pay me.
Posts: 25 | From PA | Registered: Sep 2011
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posted
You have a doc, see what this treatment will do for you. Re-evaluate after some time has passed.
Doxy can hit babesia too, but presumably your doc will at some point use anti-malarials.
Posts: 8430 | From Not available | Registered: Oct 2000
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Good job sticking to diet... I have trouble with this. I like my de-caf Doz Bog and "treats" . Some reason I feel it's OK because of all the rest of this crud.
I thought there was a comment about doing Doxy or Zith first , so that you don't become resistant to Mepron for Bart or Babs???????
Just read it but brain fog is at San Fran levels today. Posts: 2563 | From Denver,CO | Registered: Aug 2011
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James1979
Unregistered
posted
quote:Originally posted by nonna05: Just read it but brain fog is at San Fran levels today.
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Ohhhh, I got it.....
Really slow on the uptake here......
Thanks for the smile.
Biscotta-it can seem overwhelming. Being a grad student and working is enough, but add Lyme and it is tough.
Appreciate yourself for all you are doing. You have a good start.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Yes it can definetly be overwhelming. First of all try and learn "patience" because in most cases Lyme Disease is not a quick fix. It is going to take time to feel better, so accept that and don't expect things to happen too fast.
In other words don't judge your progress in a week or even a month. In most cases it will be a let down. I started to feel better after the first year and a half of treatment. Hopefully you will be luckier than me in that respect. Some ppl do start to feel better within a few months.
I wish you the best. Hope you feel better very soon.
Good luck and I hope you feel better soon!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thanks for all the responses and the words of encouragement. I will sit tight and hang in there!
Posts: 25 | From PA | Registered: Sep 2011
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posted
Ultimately, you always need to be your own advocate. With the nature of the disease, and the lack of good treatment available to many patients, we have to figure out a lot on our own. It is very overwhelming at first.
I think the key is to form a team of doctors and medical professionals that you trust. Then you can let go of it. Get in with a good LLMD, follow their protocol, and donut worry too much about researching at first. If you trust your doctor, you can let go of it, and allow them to be the doctor. Then read up about the treatment and supplements they give you, so you know what the specific supplements are for.
Then, as you move through your treatment and have more energy you can do more research. You can learn about how the illness is manifesting in your body, and bring specific questions into your LLMD. Give it some time, and after you have been treating for a fee months, you can re-evaluate your treatment, progress, and sometimes choice of doctor.
Give yourself some time. Don't put pressure on yourself to learn everything at once. Lyme treatment is a long process. You have time to learn. I think the biggest factor is finding a LLMD that you trust. Then you can let them be the doctor, and you can focus on being the patient.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
biscotta,I totally understand being ovwhelmed. It is a lot to understand. And no one on the boards want to share too much cause they are not doctors and everyone responds to treatment differently.
It's only been 5 months of treatment for me...just saw an llmd... And I have a ton of questions too.
Trying to be patient... But I know it is not easy. I love that your doctor told you what to expect. I think that is a grat help.
Posts: 1728 | From USA | Registered: May 2011
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Whatever you take, take a MINIMUM of at least 100 billion CFU's per day. Wish someone had told me that 10 yrs ago! Take all probiotics two hours away from any antibiotics.
Welcome. I would say, for me, the overwhelmed feeling is just another facet of this illness. I don't think there are too many people sick with Lyme who don't feel overwhelmed at one time or the other...or all the time!
Antibiotics, herbals, detox, viruses, parasites, biotoxins, Rife, photon therapy, diet - it's overwhelming for any healthy person, let alone someone sick with Lyme. I've been at this for 3.5 years since diagnosis. I'm often overwhelmed still, especially when my well-respected ILADS LLMD tells me I'm a "difficult case," not what a patient wants to hear! I hope you see improvement soon...TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
OOPS.. I probably added to the overwhelming feeling! Sorry!!
Do stay on top of things and be your own advocate. You must play a healthy role in your treatment and recovery.
YES! I said recovery!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Biscotta, Welcome to the site. We have all felt overwhelmed in this journey (unfortunately, it's par for the course.) But this site will give you a lot of support. It sounds like your doc is comprehensive in his/her approach. But, YES, you MUST also become your own advocate. What works for one doesn't necessarily work for the next. This site has a lot of excellent information, with a lot of smart people posting and sharing. Take your time searching out previous posts and you will start seeing things that relate to your picture.
Wishing you well, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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quote:Originally posted by Lymetoo: [QUOTE]Originally posted by nonna05: Biscotta.. so glad you found us here!!! Be sure to take high quality probiotics, not just "acidophilus."
Thanks for the recommendation and links!
quote:Originally posted by Lymetoo: OOPS.. I probably added to the overwhelming feeling! Sorry!!
No, not at all. Very helpful information. I think that to deal with being overwhelmed I need to figure out what my questions are and then seek out answers like this! So thank you.
Posts: 25 | From PA | Registered: Sep 2011
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posted
Kudzu, tickssuck and Tammy, thanks for letting me know I'm not the only one feeling overwhelmed! I have been feeling like this a lot for the past several months, also with school and personal life stuff. Thanks for all your words of support.
searching4truth, I suppose my mind is not totally made up on my LLMD. He sounds good (was one of the original authors of the ILADS guidelines) and spent several hours with me in my first appointment. But I felt like it was disorganized information, just all sorts of tidbits on the disease and Lyme politics. We didn't really discuss my symptoms (although I provided a detailed summary). Those are my only points of hesitation. He is accessible between appointments which I love.
Posts: 25 | From PA | Registered: Sep 2011
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Is it necessary to go all hardcore on the candida diet precautionarily, just for being on long-term antibiotics? It is pretty similar to what I've been doing but there are a few things I use as staples that I'd have to stop eating (milk, peanut butter). Although it seems that there are alternatives on the safe list.
Posts: 25 | From PA | Registered: Sep 2011
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