Its Official

Discussion in 'Lyme Disease Archives' started by greatgran, Nov 22, 2010.

  1. greatgran

    greatgran Member

    Lyme. After 9 years I finally know why I feel so horrible and act so bad most of the time.

    The doctor I am seeing use to be at Duke , he is from here and came home to be with his dying Dad, then decided to stay. I had seen him back when I first became sick and he helped with my disability so he knows me from day one of this disease. But due to insurance I stopped seeing him. Then decided what the heck, he is here I don't have to go out of town and he is connected with the best doctors at Duke. He also remembered running a lyme test when I first went to him which was negative of course but this time he did more and will do so later. He said he had studied lyme disese for some time and realizes that you can't go by the standard CDC test. He is not a LLMD but works with the one at Duke. At least its a start.

    It will be after the holidays but for now he is starting me on oral antibiotics, antioxidants and probiotics to get through the holidays and until we can get going with treatment.

    He did tell me with all the treatments there is still no guarantees that I will ever be completely well. It will depend on how I respond to treatment etc. How I will feel ok one day and later feel so bad.
    He said in a way its worse than chemo. I told him at 68 yrs old I wanted a few more good years. He did say treatment would probably be close to a year. Just all depends..

    The draw back of course is this doctor doesn't accept medicare so all this will be out of pocket. But if it helps it will be worth it and will manage somehow. He will be working with the doctors at Duke and I may not have to go out of town.. Not sure on that one just depends on how my body responds.

    I am drained, took my antibiotic, had a panic attack now going to try to calm down and rest.
    Oh, this darn weird head feeling is with me like a vertigo is on the way. I mentioned this to him the weird head feelings and my emotional state and he says its all a part of the disease.

    Not sure, but going to listen and do what he says, what do I have to lose.

    God Bless each of you and thanks for all your help.

  2. Nanie46

    Nanie46 Moderator



    I'm happy that you finally have some answers.

    When I first started treatment, my expectations of getting well were not realistic.

    I was thinking 6 months, then when that passed I thought 1 year.

    I am 21 months into treatment.

    I am much better than I was 21 months ago, but I have a ways to go yet.

    My LLMD told me not to expect any improvement in the first 6 months because of all the herxing from all the die off of bacteria.

    I recommend having your hormones evaluated. I had improvement in sleep, fatigue and hot flashes when I started bioidentical hormones.

    Some improvement in pain came in month 9, when I went on doxy for the second time.

    I can sure relate to the out of pocket expense. My insurance basically covers nothing.

    It will not be easy. You will have many ups and downs. But we are here for you.

    There can be so many bad days in those first months, but finally you will start to see very slow and subtle changes.

    At least you have a chance of getting alot better when you know what caused your illness.

    If you can get on lymenet, there are soooo many great people there on the different boards that will help support you.

    You really need evaluated for other tick-borne illnesses that often accompany lyme....babesia, bartonella, ehrlichia, etc.

    At least your non-LLMD seems empathetic and willing to learn something new.

    I can point you to alot of information but don't want to overwhelm you. Tell me when you want some links.

    For now, read Dr B's paper....the Bible of lyme treatment.....

    Give your Dr that link also, if he has not read it recently.

    Really high quality probiotics are a must. You will get what you pay for. Mine have 50 billion cultures per capsule...Ultimate Flora Critical Care. They are the most important thing you will take besides antibiotics.

    What antibiotics, probiotics and antioxidants did he put you on?

    My LLMD says that lots and lots of Omega 3's are a must. I take 5 grams of fish oil daily and also eat chia seeds mixed in my protein smoothies.

    He also says lots of Vit D3.

    I can't remember if you follow a special diet or not. It has helped me to be sugar free, no high fructose corn syrup, no sugar substitutes, very little processed foods. I am usually gluten free, soy free and dairy free most of the time.

    Exercise has helped also and is considered a must for recovery. Of course, it has to be slow according to what you can do.

    You are finally on the right road, gg!

    I applaud you for being open minded and listening to the possibilities of what your illness could be.

    I'm here for you anytime. Good luck!

    Big hugs!!!!!!!!!!

    [This Message was Edited on 11/22/2010]
  3. greatgran

    greatgran Member

    Thank you for all your help.. Right now I am trying to process all this , he said so much and my mind doesn't seem to absorb things.

    When I came home and took the first antibiotic about an hour later I had a terrible spell.. Something went off in my head, like pressure, vertigo coming on then horrible anxiety. Still not sure if it was me or the meds.

    Do you have strange or weird head feelings?
    The antibiotic is Clindamyacin sp, . I am not sure what antioxidants or probiotics he didn't recommend any special ones except lots of vit. C.. he just said to load my system with them..
    What do you take? I am to take the fish oil, vit d3, protein. and vitamin/mineral supplement. double doses. I am not even sure what protein to buy. Guess he was leaving that up to me .. the main thing was to take them..

    He did say not to expect anything for 9 months to year.. Oh , he did say garlic was good..
    So much to digest but I can call at anytime. I would really be excited it I hadn't had that head spell about an hr after the antibiotic.. Now I am scared to take them but will do..

    Hope you can make this out as I don't seem to be with it..
    Hugs and thanks,
  4. Nanie46

    Nanie46 Moderator


    You are welcome!

    Your head symptoms could be Bartonella. I think I have read about alot of other people having those symptoms who have bart on lymenet.

    I did have alot of head pressure along with terrible neck, head and shoulder pain. It is about 2/3 better.

    I never had anxiety but it is often associated with bartonella.

    I take LOTS of supps and meds. I have not taken all of them the whole time. I added things and took things away as my LLMD made suggestions.

    Right now I take these supps/vits/meds:

    Ultimate Flora Critical Care probiotics

    Vit D3 10,000 IU daily (that's alot. many people take 2,000-5,000 IU)

    Carlson's Super Omega-3 Fish Oil 5 caps daily

    B complex

    E complex

    Vit C


    Sublingual B-12

    Alpha Lipoic Acid

    Acetyl L-Carnitine





    Ubiquinol CoQ10

    Sublingual melatonin

    Prima Una de Gato (TOA free Cat's Claw)



    Several Bioidentical hormones

    Lugol's solution

    I try to buy supps and vits that do not have alot of additives/fillers in them.

    I use Designer Whey Protein Powder in Natural (unflavored) flavor. I add fresh fruit to it in a blender.

    Other people on lymenet use other brands too.

    You can search the Medical Questions board there for just about any subject to see past posts.

    Dr B. writes about necessary supplements in his paper...pages 27-31...

    For now get the important ones....High quality probiotics, Vit D3, lots of omega 3's (you'll notice on the label that a 1000mg fish oil cap may contain 600 mg Omega-3's, for example.),
    good quality multi vitamin/mineral supplement.

    You'll see that Dr B says to take CoQ10 (Ubiquinol is best), ALA, magnesium, etc.

    Get whey protein powder without sugar.

    Other supps can be added depending on what symptoms need sleep.

    Make sure you take your probiotics at least 2 hrs away from any antibiotics.

    I take my antibiotics at breakfast and supper. I take my probiotics right before bed.

    Take it one step at a time. There is no doubt that you will have increased symptoms as you have die off of bacteria from antibiotics.

    There are many threads about detoxing and things that can help eliminate those toxins, on lymenet.

    You'll learn gradually. There is alot of info out there.

  5. victoria

    victoria New Member

    I am not surprised... sorry I haven't been here in a while. I hope your doctor is a good one. It seems every one has his/her own 'take' on how to treat.

    The one thing I strongly advise is that you're given "holidays" from abx regularly to let your immune system recover on its own a bit. Bb and others are slow reproducers. My son was always told by his LLMD to not take abx every weekend, and also to stop all meds the 4th week after 3 weeks of treatment. It's one of the hallmarks of his LLMD's treatment.

    It also gave him hope because he always felt better especially that 4th week, he could see the light ahead so to speak or I think he might have lost hope.

    good luck with your treatment, I hope somethings begin to resolve fairly quickly... you never know, so all my thoughts/prayers are with you!