My first LLMD appointment yesterday-update-lyme confirmed

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alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 10/21/2009 5:02 PM (GMT -7)   
Hello all! So,I finally had my appointment yesterday. He didn't even order the Igenix tests because he said that the regular tests confirmed that i have lyme and also had mono at some point in my life as well.
So, to start, he is having me take 1000mg of amoxicillin 4 times per day. Acidophilus or yogurt at least twice a day, but not with antibiotics. But, both are supposed to be taken with food, so how many times per day am I supposed to eat? Oh, and a vitamin B Complex pill and a multi-vitamin. Then, I go back in 30 days and if it is not working, he will switch me to a different antibiotic.
I am really not excited about this. I really wanted to start treatment, but now I don't want to take these pills. I didn't take any today yet. I just know I am gonna get sicker and I am scared! But, I am going to start taking them tomorrow. My whole day is going to consist of eating and taking pills:(
I am going to detox and stuff too. I can't find cheap dried mustard. The stuff I got was like $4.99 which is just crazy, so I gotta look online.
He didn't tell me to follow any kind of special diet, but from what I read on here I shouldn't eat sugar, or like bad carbs that turn to sugar? I have so much to change! Plus, I am sick right now with a cold/flu anyway, so I don't want to take any pills and get sicker right now. But, I know I have to.
Any additional info I need to know from those of you with experience? He didn't rush at all, and had time to answer my questions, but I didn't know what to ask at the time!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/21/2009 5:32 PM (GMT -7)   
alone,

Is he going to check for co-infections?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 10/21/2009 5:35 PM (GMT -7)   
No he isn't. That is what kinda confused me. He said we don't need to do any Igenix testing because my regular lyme test was positive. I didn't argue because I am sick and didn't want to fight and because it saved me money. But, it's been bothering me ever since. WOuldn't it help him to know which lyme strands I have? And don't I need to treat the coinfections?

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 10/21/2009 6:06 PM (GMT -7)   
Yes, it is very important to treat co-infections if you do have them. Did he give you a co-infection symptom list to check off your symptoms? Some doctors do that instead of testing since the tests can be inaccurate.

If you do have a co-infection, that needs to be treated first. Doctors started realizing that when patients didn't get better on Lyme treatment, there was a co-infection involved.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


JennInPA
Regular Member


Date Joined Sep 2009
Total Posts : 228
   Posted 10/21/2009 7:10 PM (GMT -7)   
alone - I take my antibiotics with toast at 8:30am, then at 12:00pm I take my probiotics (acidophilus) & all my vitamins(zinc, magnesium, vitamin D, Super B-complex) then at 8:30pm I have crackers or toast with my antibiotics. If I were you, since you have to do 4 times a day (Which totally sucks!) I would just have a banana or apple with the snack time ones or just have toast. i dont know about amox. but with doxy it says you can't take zinc, & magnesium, with in 2 hours, so make sure to read your script bottle!

Also, I did not get sick when I started my antibiotics. In fact, I never got sick, but I never felt any better either, so... BUT I can tell you that probiotics can make you feel sick.. headaches etc. So depending on what you get, I'd start out slow. PB-8 is 2 pills once a day, and I had to start out with 1 pill for a week then I up'd it to 2. good luck!

alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 10/21/2009 7:15 PM (GMT -7)   
Thanks girls! I need to call him and ask these questions.
They did ask me if I had sore throat, vision problems, fatigue, joint pain, muscle pain and like 2 or 3 other things. But, these are lyme symptoms, not co-infection? Or both? I think I should get the co-infection tests at least. I will ask. I am so afraid he is going to think I am questioning his judgement and get pissy with me though. But, I have to think about me first, so too bad for him I guess!
Jenn, thanks for the probiotics info. I didn't know those could make you sick as well! Geesh. I am on doxy (very low dose) for face lesions (which I think is also from lyme) and i have to take those twice a day without milk or anything with vitamin D...so I have to space those as well, which is a huge pain in my you know what! I think I will have to make a schedule and follow it to a T in order to get everything in at the right times. Crazy!

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 10/22/2009 8:59 PM (GMT -7)   
A&S,

I have to keep my med schedule on a calendar to keep track of what I take when and what I can't take with what when. Whatever. It does get confusing. When you start pulsing meds, it's even more confusing. I take one thing 3 weeks on, one week off, another medication 3 days on, 4 days off. And trying to fit vitamins and other supplements, including probiotics, in there becomes even more challenging. As if Lyme brains aren't taxed enough.

I hope you find out you don't have co-infections. But if you do, the medications may be different so it is important to know.

Rose
I have Lyme; it doesn't have me.


Sillysick
New Member


Date Joined Oct 2009
Total Posts : 2
   Posted 10/22/2009 11:20 PM (GMT -7)   
Hi,

I am new here as well to Lyme itself (just received results last week from IGENEX of positive with a Primary doc that doesn't believe in it...argghhh), so I am just learning about all of this. However, I feel that you should also be tested for the co infections, as I too will be doing now. I also like the idea of a calendar for your medication schedule as Rose said.

Rose, you are how I found this forum, so thank you....I was searching for a LLMD in the Sacramento area, and your post on this forum popped up. :-) I still haven't really found one, do you like yours? If so, do you think you might be able to email me their information? That would be ever so helpful.

Michele

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 10/23/2009 5:34 AM (GMT -7)   
I've read that amoxicllin is great for many people. Ask him about the co-infections. He should not interpret that as questioning his judgement, but being an informed patient. You need to be your own advocate. The first LLMD I saw forgot to mention my test results about co-infections. While we were walking out I remembered and asked him. He hurriedly looked at the test and said only two of the four were completed and then told me I didn't have the first two, but he named the wrong one! Fortunately I asked for a copy of the test and saw for myself.

My whole day is spent divvying up meds, supplements and probiotics. Sometimes, I just get so tired of it. But it is what we have to do. I'm doing three different candida/probiotic supplements because I get candida so easily. I feel like this disease is my own little "cottage industry". And in order to be able to three meals plus a small snack at bedtime and get all the water in, I have to keep my meals small enough so my tummy will hold it all. That can be tough; there is no room for snacking anymore.

Most LLMD's and docs on the net that are giving advice about any chronic illness say no sugar, white flour and dairy. The thing you want to do is keep your body as alkaline as possible to promote healing. An acidic body gets sick. Try to read up on that, it's very enlightening. Certain foods promote alkalinity and some acidity. I know paying attention to it has made a difference for me. I don't have the stomach aches I had before changing my diet. I do "cheat" about once or twice a week with a cookie or a little ice cream ... sigh.

Good luck.

alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 10/24/2009 11:51 AM (GMT -7)   
Thanks so much everyone. I have been doing horribly with the diet. And the meds for that matter. Yesterday, I took morning dose of amox at like 9am with breakfast. I was gone until 4pm. So, i had to fit the other 3 doses in from 4pm to 11pm. Also my doxy in there (which can't be taken with food.) and my probiotics (which can't be taken with antibiotics). And my vitamins, which also have to be taken with food, but not with doxy. Grrrr! I accidentally took my doxy with my probiotic:) Oh well. I did pretty well the rest of the day and I fit everything in, BUT it isn't going to help me if I am taking 3 doses within 6 hours.
So, this am..I got up at 6 and took probiotic with my non-lyme meds. I fell back asleep and didn't wake up until 1pm! So, that is when I took my first amox dose. I set the calendar on my cell phone to tell me what time to take everything today! But, again, I am cramming it all in. And today, I Took my doxy with my vitamins!!you can't do that either.grrr.
I emailed my sister and asked her to make me a calendar type list of what time to take what and when to eat, etc. But, haven't heard back yet.
But, I have found...I don't want to eat. AT ALL. That is very weird for me because I am a chronic over-eater!lol.
Yesterday, I had a chix salad croissant at 9am. 5 cheez-it crackers with my first amox dose. a little bit of white cheddar popcorn with my 2nd dose. And 5 saltines. And, I had to force feed myself all of this.
Today, I have had 7 saltines. I just don't want to eat. I will lose weight, which is great, but I am going to be malnutrioned which will not help the healing process...
I have so much respect for all of you who do this! And, those who actually do it right! I am LOST right now. I mean, I know what I need to do, but just can't figure it out:(

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 10/24/2009 1:13 PM (GMT -7)   
Alone- one of the antibiotics I used to be on had a side-effect of appetite suppressing. You should check the side-effects of whatever you are on. You need to make sure you are eating enough, and eating the right things. But- having the schedule of when to take your pills, and what to take them with might help. I have to eat a decent meal three times a day because of my pills! But I also make sure to plan my meals ahead of time, to make sure I'm getting all my veggies and good foods in.

And don't worry too much about being confused and overwhelmed at first. Figuring out when and how to take your pills, and remembering to take them is difficult. You just need to give it time, and you will start to adjust. If I were you, I would invest in a pill box. I have one for all 7 days of the week, and I would be a mess without it. I can never remember what I've taken already, and the pill box also helps make sure I take things at the right time.

And I have to laugh about your cellphone. I did that with my cell phone even before treatment. I was the running joke in my family, because I would have my alarm settings and my calendar chock full of reminders! If my phone rang, 98% of the time it was a reminder!

I don't know if you are much of a routine or list person...I know, before Lyme, I wasn't at all! But I've found the most important things I have to do is give myself routines. Routines for eating, routines for taking my pills....I have a routine for almost everything, because that way even on the days where I have so much brain fog I can't think, I can still get through the day ok.

Good luck!

Nicky

alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 10/25/2009 5:44 PM (GMT -7)   
Thanks Nicky!
Lol.My cellphone is the same way. Now it rings like 10 times a day and it is all reminders..and most of them aren't even in my phone:)
I didn't use to be a list person either, but I am starting to have to be too! I just forget that I made a list, or lose the list *sighs*
I still need to get a calendar made to tell me when to eat and when to take meds. I just seriously don't have the energy:( I am kinda winging it right now. But, for the most part it is working out. Getting better each day.
I did have to get a pill box too! I bought one like a month ago that had the seven days with am, lunch, evening and bed...I had to buy a bigger one this week. So depressing! But, it fits all of the huge abx's with probiotics and all my other meds. I figure by the time I figure this out, my meds will be switched and I will have to start again!
However, I am still happy I am finally diagnosed and on treatment!
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