posted
Talk to your doctor about your concerns and the reasons. Perhaps he will increase your dosing, or perhaps he will explain why you need to stay where you are.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
do what your doc says and to ease your mind some lyme is also intracellular and 200mgs a day has been shown to be effective for that form of infection.
I herxed hard on that dose as well .And whatever else is living in your white blood cells which could be one of 100 species of cell wall deficient bacteria get zapped as well.
I also think some docs want to let you build up to the effective level of 4-600mgs a day keet killing dose so you can function .
This is what my very respected LLMD from MO told me and so far hes been right.Hope this helps a little.You can find out more about what bacteria can enjoy hanging out inside your immune cells other than borrellia at www.immed.org Doxy is great at killing em.
So go ahead keep murdering them its OK with me and have a good weekend,RG
Posts: 140 | From Texas | Registered: May 2006
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bettyg
Unregistered
posted
I took that dose plus biaxin: 3 days on 1; off 2 days, and then 3 days on other abx, 2 days off then started other again for 20 months.
Had another IGX western blot igm/igg 4-06; NOT as many positives as the 1st time 2 yrs. ago! Bettyg
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posted
I know I'm supposed to do what my Doctor says...and although he is very good...I think he is very conservative and unless its in the medical journals, I'm not sure he is really going to know about it or try things that arent precisely documented. I dont think that the AMA is a fair playing field and so therefore I dont really trust their "research" or protocols. As good as my doc is...you cant talk to the man unless you have an appt...you have to pass messages through the nurses...there is no treatment discussion directly with him after the test results come in. I'll call again and tell him my concerns and that I would like to take a higher dosage, but honestly, I have a tough time trusting that docs know best. I know how this sounds and I'm NO doc, but often times its so frustrating to keep going to a doc and the bottom line is you have to somehow help your self, treat yourself and pretty much use him for labs and prescriptions...then I doubt the labs...is it accurate...do they know what their doing? Is it just me? Maybe I'm truly losing it! Posts: 45 | From NJ | Registered: Sep 2006
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I just dont want to waste time and be on abx if its not going to be at the KILLER level. I REALLY like Dr. E...he listens and he "gets it" but I fear he may not be aggressive enough? What is even more confusing is all the tests for all the possible coinfections and every possibility that he tests for comes back negative...including the Lymes, which he feels is a false negative due to symptoms and a recent tic bite...all of it being negative though puts just a touch of doubt into my mind that I'm taking abx, which I hate taking, for nothing and maybe it is something else or I'm not doing something right or eating the wrong things...self blame stuff... Talking through his receptionists is very frustrating as they sometimes get it wrong, or just half the message and then you have to wait for a call back. I asked if I could speak with Dr. E, they said he is way too busy and when he isnt seeing patients he is dictating. They should hire a nurse that is Lyme literate etc and have her be available for calls and concerns as well as discussing your test results. Sorry to go on all about me... What sort of pain are you in? Did Dr. E say he might change your treatment based on the results? How much longer do you have to wait? Thanks for the reassurance that I'm not looney...this stuff sure can play with your head. christina
Posts: 45 | From NJ | Registered: Sep 2006
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quote: What is even more confusing is all the tests for all the possible coinfections and every possibility that he tests for comes back negative...including the Lymes, which he feels is a false negative due to symptoms and a recent tic bite...all of it being negative though puts just a touch of doubt into my mind that I'm taking abx, which I hate taking, for nothing and maybe it is something else or I'm not doing something right or eating the wrong things...self blame stuff...
Dear Run4Fun, I couldn't agree with you more. I'm in exactly the same situation, although my doctor is a tad more accessible it sounds.
Still, my most recent tests are all negative. I did test positive for Lyme 5-6 years ago and was treated with only 2 weeks anbx.
Eight months ago, I started to hurt all over, particularly getting up from prone position or sitting, and especially getting out of bed during the night or in the morning. I have both muscle and joint pain, and I get really stiff when I'm not moving; but all RA and arthritis tests are negative too.
So, while I suspect late/chronic Lyme (or even a new infection, given all the ticks around the house), I also wonder if I should be taking doxy and, if so, am I taking enough?? Like you, I'm on 200 mg./day -- I did one month during late summer, and just started another month recently. However, I stopped in the middle of it because I decided it was more likely fibromyalgia, but then changed my mind again, and started taking it again.
I couldn't be more uncertain or confused -- particularly because there's no confirming test, so there's always that bit of doubt!
On top of that, I had to dig yet another deer tick out of my shoulder just yesterday! I'm in the woods in CT, and they're everywhere (as are the deer, the mice, the bears and foxes)! My dog is currently being treated for ehrlichia (he tested positive; no Lyme though). My own ehrlichia test was negative of course.
Just thought I'd reassure you that you're not alone wondering whether you're doing the right thing, or even being treated for the right illness.
I've never been one to take antibiotics unless absolutely necessary, so I have been reluctant even to pursue doxy treatment... yet here I am...
What are your primary symptoms? Hope you get some relief soon!!! Carol in CT
Posts: 4 | From CT | Registered: Oct 2006
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posted
Thanks for the reassurance Carol...sometimes I feel like I'm nuts and the only one doubting this whole godawful medical
testing and treatment deal. What is real? I try to think what made me feel better those times I
did and except for the initial treatment of Doxy when firt bitten 7 years ago, I cant remember any
medical treatment that really gave me relief...it always seemed that the stuff ran its cycle and
during the spring/summer I felt pretty good and then around this time each year I start feeling
like crap again. Who do you believe? Your supposed to believe the docs...but how much do they really
know and how conservative are they, open minded, truly educated in the field? My Doc really is one
of the top docs and has saved many lives I'm sure but sometimes I just dont hear or feel the confidence
in his treatment plan or abx decision. SO I either get so desparate that I do what he says, or
after a while if there is no change, I get so angry i just try things on my own and struggle through.
My symptoms are mostly neuro...major anxiety, mood swings, personality change, fatigue, heart
palps, cant sleep, crazy feeling and some nausea, etc. I'm also always freezing inside and hot outside...
I also wonder, if there is no relief from the Doxy than doesnt that mean its NOT working?
Do you think your symptoms could be neurotoxins? Or are you reinfected? Like you said though
why the constant negatives? There has to be some testing that is sensitive and more accurate...no?
Check out chronicneurotoxin.com I found it very interesting, took the vision test and did the
protocol for 6 weeks with success. It cleared many symptoms, but not these Lymes ones and so
I'll give the ole Doxy a try. I'm SO sick of the whole experiment though. Try this one...now that
this and that...still nothing...try this new one. UHG! I'm like you, I dont even go to a doc unless
its absolutely necessary, let alone take meds. Now its been 7 years on and off abx. So I guess
I'll do the doxy for a month, but I am going to call the doc Monday and tell him I dont feel the
levels are high enough and see what he says. The physical symptoms you describe sound awful...how do
you get through? Does anything give you relief? I sure hope so! Let's keep on supporting each other
as sometimes I feel like a "black sheep" for doubting and questioning everything.
thanks again
Christina
Posts: 45 | From NJ | Registered: Sep 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Runs, it's really common to feel this lack of confidence in your diagnosis. We've all been there!
When your testing is negative, often your LLMD will start you off on low doses as a kind of diagnostic measure in itself. He'll be interested to see how you do on it. Do you suffer a herxheimer reaction to it? Do you feel better on it? Worse? These answers are actually tools to help guide him in what to do when he sees you next.
So try not to be frustrated. Even an apparent lack of progress is a part of the puzzle.
Sometimes if your LLMD's staff is not that lyme-literate, you can simplify communication by sending a little fax to your doc. Short, sweet, and with a couple questions clearly set forth. He might pen in an answer and fax it back, or have his staff call you. This is much more hopeful than getting through on the phone. You might be charged for this. But try and be patient and unless concerns seem of an urgent nature, many times old Lyme-netters can help.
Be sure and let your LLMD know if you're intending to start any supplements or regimens he's unaware of.
Hang in there, and I hope you are feeling better soon!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Like you I am also in a doxy dilemma-thought I was undertreated so now doing a second round at 400mg/day this time...
I did have some mild herx symptoms while on the 200mg/day.
While reading the accompanying RX info sheet found it interesting to note that some of the possible side effects for doxy read like a LD symptom list...headache, joint pain, fatigue, blurred vision (and this is for the suggested dosage, not doubled!)
Go figure!!!!
How to know if you feel crummy from the meds or a herx??? Guess time will tell -
Good luck! Sue
Posts: 249 | From finger lakes, ny | Registered: Jul 2006
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I'm on 400 mg of doxy from the start. I'm only on day 2, but so far... some herxing but mostly nausea. I think if you take your doxy with some food it should help that.
My LLMD said he'd like to keep the doxy as high as my body will allow.
My understanding is that at 200 mg the doxy prevents the bacteria from growing. At 400 mg it actively kills bacteria.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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Hi run4fun- Hope you are doing better & making out OK on the 300mg-
I am into the 2nd week at 400mg & seem to be doing pretty good-trying to not eat ANY Halloween sweets hasn't been easy though.
I have cheated (but not too much!) So far no herx to speak of...headaches over the weekend, but I could also attrribute them to the low-pressure system we had??? Sure hope it hits me over the weekend & not during the work week if it comes at all!
You have been on abx for Lyme before? Same LLMD? It does seem like a low dosage from what I have been reading-How long are you supposed to stay on the doxy? Seem to me your LLMD probably has a plan- Take care-Sue
Posts: 249 | From finger lakes, ny | Registered: Jul 2006
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Hi again- The feelings you describe were exactly how I felt when first on the doxy (at 200mg) this summer. I was tired, touchy, anxious-making life especially difficult for my 16 yr old daughter!! It was like a 3 week PMS bender
In the middle of all this, my daughter brought me some flowers from a farmstand for my b-day & a tick crawled off onto my kitchen counter-
Thought I'd need to be committed after that!!
I also was nauseous & felt like I was becoming anorexic-(not good as I am already underweight..)Was thrilled to finish the round of abx even though I wasn't yet symptom free!
In hindsight, I do think it was one 3 week long herx! Now that I am on the larger dose I am starving ALL the time (though it's tough to find suitable snacks without carbs & sugar) Living on cashews & almonds for lack of better ideas!
I do feel better-(less crazy-like!) so I hope that will happen for you too-How long are you on the doxy for? Sue
Posts: 249 | From finger lakes, ny | Registered: Jul 2006
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