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Saw infectious disease dr....now even more frustrated and confused. = (

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Posted 7/19/2012 2:15 PM (GMT 0)
Even though my gut told me not to see an Infectious Disease dr, since I have not seen a significant improvement in my health after 6 months of antibiotics I felt it wouldn't hurt. Well this dr told me she didn't even believe chronic Lyme exists, that after 6 months of antibiotics the Lyme would be gone (even though I went untreated for 9 months), wants me to get a spinal to verify I even have Lyme (even though my blood work was 5 out of 5 bands!), suggested my symptoms I am mistaking for Lyme are from depression and anxiety which I do suffer from but come on! She also suggested I probably have chronic fatigue syndrome instead and that the Lyme caused this underlying condition to 'flair up', wants to retest me for about 12 different diseases I was already tested for that came back negative and said she wouldn't treat me for anything at this time and I need to see my GP and get treated asap for depression and anxiety. = (
I had been seeing a LLMD who I like and has had me on amox for a long time but I had to stop because of recurring yeast infections even after taking tons of acidophilus.
At this point I feel like my only option is to go back to the LLMD and continue the long course of antibiotics and hopefully figure out a schedule to keep the yeast at bay AND I guess see my GP for antidepressent/anxiety meds. I have already tried about 4 and none worked and gave me worse side effects. = (
I guess my question after all this rambling (although it does feel good to vent) is can't it take a long time to get better after going so long untreated and has anyone else been told they have chronic fatigue? I have read so much controversial info on infectious disease doctors and the insurance companies and the government and the way they treat patients incorrectly or don't even want to acknowledge that lyme even exists. If chronic Lyme doesn't exist why are people dying from it??? It's so frustrating...no wonder I have depression and anxiety!! I feel tired and achy all the time and can't enjoy anything and on top of this I use what little energy I do have to care for my 18 month old. I've just slowly started going back work...I am pet/farm care provider and although being outside feels great and the animals make me happy the time spent on my feet make my legs heavy and it takes at least 1 day t recover after a day of work.
Thanks for letting me vent! :-)
Posted 7/19/2012 2:32 PM (GMT 0)
Your story makes me so mad! It happens all too often and this kind of malpractice is NOT okay!

I was finally diagnosed 6 years after my tick bite (6 years of being so sick and told I was depressed - a likely story for a 10-YEAR OLD!) - I was treated by the president of ILADS, and when orals weren't working we challenged my ins. for IV treatment. They said no, and referred me to an infectious disease doctor (because if a lyme-trained doc says I have it, and a non-trained doc says I don't, clearly that means the latter is correct?) - this ID doc told me the same thing as you, that I might have chronic fatigue, that I have hypogylcemia (I don't), and that I was a deconditioned teenager who was depressed because I couldn't dance anymore (gotta love the listening skills there - I had NEVER been a dancer!).

Young and naive, I spent the next 8 years on a wild goose chase for diagnosis/treatment - everything from CFS to fibromyalgia, PLENTY of anxiety, bipolar, etc. - at one point we got close with Dr Shoemaker and the mold/lyme toxins, but it never occurred to me in my ignorance (as a patient I shouldn't HAVE TO know better!) that I might still have that lyme infection that I was told doesn't exist!

(Looks like I wanted to vent right back at you!). I'm really sorry you had to go through that - just last week I went to a regular GP to check a sinus infection and he tried to sell me on lexapro, telling me my "thinking" I have lyme disease is really a sign of depression. I cried for a while after that appointment (and THEN became depressed hah!).

Could you maybe try doing a candida cleanse (preferably with the help of some sort of naturopath), then build up your gut flora, and then retry abx? Or you could work with herbals as besides things like GSE they don't tend to kill off your good bacteria. What kind of probiotics were/are you taking? I found I felt best when I took a ridicluous amount - 120 billion of lacto/acidophilus and then one of "truflora" every day - it's a mix of a bunch of different organisms.
Posted 7/19/2012 2:58 PM (GMT 0)
Wow - I'm sorry borderlyme (and I'm sure alot more) have gone through the same and such tough issues with this. You have fighting ALOT longer than I have. Did you actually find a treatment protocol that worked? A candida cleanse sounds like a good idea!
No problem venting right back at me! = )
I have not tried any herbals or any other treatments other than the antibiotics but I think it's a time for a change of action. I have been taking Nature's Bounty Probiotic Acidophilus Capsules 4x a day. I also recently started juicing and changing my diet....I honestly haven't noticed a difference in symptoms whether I eat good or naughty food.
Even my LLMD was against the antidepressents even though I have had a history of it because she said the Lyme causes you to feel worse and that those meds can make you feel 'dull' and they all come with all sorts of side effects.
My husband has suggested a naturopath and perhaps it's time to research one in my area that HAS Lyme experience. The only issue is most I have found don't take insurance and since i haven't been able to work since Dec 2011 the budget doesn't leave much room for MORE dr visits. = (
Posted 7/19/2012 4:24 PM (GMT 0)
Lyme Disease is a very distressing and frightening illness , I think we all have the right to be anxious,depressed sometimes and of course we're exhausted who wouldn't be .It is so sad that the doctors who should be listening to us and taking us seriously are far too often responsible for filling us with self doubt and frustration.We know our bodies best and often have an inborn instinct regarding our health,if you feel that you want to take a more natural approach there are many people here who will certainly be able to help you.
Good luck
Posted 7/19/2012 5:04 PM (GMT 0)
Ahh, I wouldn't waste another minute thinking about that Infectious Disease Doctor.

As you have not made much progress on the amoxycillin, perhaps another antibiotic would be better or an addition of herbal cures.

Perhaps you are dealing with a coinfection in addition to the Lyme.

Also, have you considered maybe moving over to one of the natural protocols as you have been struggling with the candida?
Posted 7/19/2012 9:14 PM (GMT 0)
Infectious disease specialist are notorious for denying the existence of lyme. She has no credibility, so don't let anything she says get you down. I agree that you shouldn't waste another minute thinking about her.



I wish you the best!
Posted 7/22/2012 5:14 PM (GMT 0)
Please download the PDF, print and read then keep rereading, "Advanced Topics in Lyme Disease" by Joseph J. Burrascano Jr., M.D.. This is the blueprint to working with chronic lyme and will answer or give you a direction for further research.
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