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Old 07-12-2006, 05:49 AM   #1
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Confused about what the doc. said

Good morning folks. I went back to the doc. for my 3 week check up. When I got there the doc. told me that my liver test came back ok and the co-infection tests came back neg. However that the Eliza test and the Western Blot test came back considerably higher than the last test I took. She continued asking if I still had any of the symptoms. I explained that I feel 100% better than I did before and do not carry any of the symptoms that I previously had. The doctor could not explain why those 2 tests had higher numbers. I explained that the day my blood was taken was the 1st day off doxycycline, so I was wondering if that was the reason. She didn't have an answer. She told me to keep an eye on the symptoms and if I started feeling bad to give her a call.

I'm left confused about the test results. What would make the numbers higher than they were last time even after 3 weeks of meds? Any answers you might have would be greatly appreciated.

 
Old 07-12-2006, 06:13 AM   #2
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Re: Confused about what the doc. said

Hi isapaine.

The only explaination I can think of is that once you started taking antibiotics, the bacteria died, and pieces of them (antigens) starting floating around your blood stream causing your body to make killers (antibodies).

If the tests tested for antibody levels, then they would be higher.

I am not a doctor, thats just my opinion.

You are still taking medicine, right? Three weeks is not long enough to kill all the Lyme bacteria.

Be happy that your doc cares - a lot of them don't.

Peace and health to you.

 
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Old 07-12-2006, 09:29 AM   #3
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Re: Confused about what the doc. said

I am still not on medicine. I was only on 200 mg of doxy for 3 weeks. The doc said that my insurance wouldn't cover anymore than that and that they have never given over 4 weeks of meds for lyme disease.

 
Old 07-12-2006, 10:14 AM   #4
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Re: Confused about what the doc. said

isapaine:

Sorry to hear about the doc & the ins. company giving you the run around. I have an insurance company that refuses to pay for squat. They are sending me to the poor house.

I pay out of pocket for my doctor visits and my insurance covers 50% of my antibiotics.

Have you seen a Lyme Literare Medical Doctor (LLMD)?

4 weeks is not long enough to kill the bacteria. The stupid little buggers have a long life span.

You may want to ask your doctor to keep you an antibiotics longer.

Its a good thing that you're feeling better - so Hooray for you!!

 
Old 07-12-2006, 01:17 PM   #5
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Re: Confused about what the doc. said

Hi isapaine. Three weeks of treatment is never long enough for Lyme disease, and 200 mg of Doxy is not strong enough.

Did you know that many people who have Lyme had were able to keep the symptoms at bay for a long time, even years? Then when their immune system became additionally stressed (illness, accident, divorce etc.) the symptoms emerged. The longer an infection is present, the harder it is to treat and the longer it will take.

I highly recommend that you see a Lyme doctor and get further treatment. It could be that your symptoms are not present because your treatment has not been aggressive enough. An early infection is the easiest to treat. Getting the proper treatment now may reduce the chance of long-term complications. I am telling you what I wish someone would have told me early in the infection. Untreated or under-treated Lyme disease can be serious.

Which lab did your testing? Do you have copies of your Western Blot? If you post the results, I can help you interpret them.

I hope you will do whatever it takes to see a knowledgeable doctor. Good luck!

 
Old 07-12-2006, 03:54 PM   #6
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Re: Confused about what the doc. said

Hey Isapaine, sounds like a bitter sweet situation huh!.Most importantly, I'm glad you feel back to normal however, its a shame there's still an overhang regarding test results and receiving the "proper treatment" Sounds like you have a genuine doc (unlike mine), I'd probably just plead for another round of meds with her.. do you know how she tested you for "co-infections"?..I've yet to do that myself..Let me know how you make out since I fear I'll be in the same bout in a week or so myself..Take care and good luck!!

 
Old 07-12-2006, 04:23 PM   #7
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Re: Ticker

Hey Ticker, since I'm sure to be in Isapaine situation in another week i'm curious...Would you think another (month) of Doxy @ 300 mg would be adequate?..that would mean 7-8 wks..I know your not a doc and probably don't want to play one on message boards but this has me a bit concerned..When is it exactly a person can assume they are "cured"...And what is the best means (test) to utilize in your opinion...I know there are a ton of variables but when can someone start to feel they've won?...This is an unbelievable learning experience!, once this thing is kicked, I'm gonna turn into a physcho lyme advocate! Its unbelievable how gray and under treated on a whole this thing is, and I'm in Connecticut! Uggghhh

 
Old 07-14-2006, 06:05 AM   #8
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Re: Confused about what the doc. said

Thank you all so much for you listening ear and support. It's been a bit of a road and there's still more road to follow, but for now I'm stuck.

To answer a few questions:

Ticker Labcorp did my testing, however I did not get a copy of any of the tests that the doc did on me, which totally sucks cause I could use them. Maybe I can call and have her fax them to me.

As far as seeing a lym doctor, I live in upstate new york and have no clue of which docs are specifically lyme docs. Maybe someone can post some names on here for me. I'm about 20 min away from the Albany area.

Also I've heard that lyme specialist are not covered under insurance and that the initial visit usually costs $500. Is this true. Any information you could give me would be greatly appreciated.

Smsully, as far as the doc testing me for the co-infections, I'm not sure what she tests she did right now. If you give me a few days I should get the statement in the mail stating what was done as far as blood work. I doubt they are going to give me the tests for free. HAHA!

Again, thank you for all of your support. I truely appreciate it. I'll report back once I am able.

Take care.

 
Old 07-14-2006, 06:28 AM   #9
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Re: Confused about what the doc. said

Hi isapaine.

My LLMD does not accept insurance. I paid about $200 for my first visit. My second visit was a tiny bit more because of all the blood tests.

Now I see her once a month and I pay $80 - $150 depending on if she runs tests or not.

In the begining of my treatment, I couldn't care less what they charged me - I was so sick.

Gosh, sorry but I don't know of any LLMDs in your area. I'm sure someone else does.

Hang in there. Peace and health to you.

 
Old 07-14-2006, 09:16 AM   #10
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Re: Ticker

Hi smsully. Remind me how long into the infection you started treatment. Have you been taking 300 mg of Doxy since then?

I believe that IgeneX is likely the best lab for the Western Blot (test for Lyme) and co-infection tests for Babesiosis, both types of Ehrlichiosis, and Bartonella.

It is my understanding that an infection caught within two weeks of the bite should be treated for a minimum of six weeks of the proper dose antibiotic. If symptoms are still present or if the infection has been longer, further treatment is warranted. For longer infections, I believe most Lyme doctors treat until all symptoms are gone plus at least two months longer. You definitely want to err on the side of caution with this disease.

It is terrible how much ignorance there is about these diseases.

 
Old 07-14-2006, 09:20 AM   #11
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Re: Confused about what the doc. said

Hi isapaine. I know of three Lyme doctors in NY who come highly recommended: in Armonk, Hyde Park, and East Hampton. If you would like one of their names let me know. I believe that NY has the highest number of Lyme cases in the country.

Most Lyme doctors do not take insurance because often insurance companies do not reimburse them. People pay up front and submit the bills for what their company will reimburse. You can call your company to see what they would cover.

I hope you can see a Lyme doctor soon.

 
Old 07-14-2006, 10:12 AM   #12
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Re: Confused about what the doc. said

Hey Ticker, thanks for the response.

My doc wouldn't allow me to take more than 200 mg a day and I started about 25/26 days after I removed the tick...I'm calling him next week to get back in there and re-do my labs and suggest another "round"...As back-up, I have an appt scheduled for a nice specialist in Middletown,CT on the 31st...So, I'm hopeful, she'll conduct the co-infection tests and allow me to get proper dosage as well..I run out of these on the 25th, so it would only be a lapse of just under a week without RX...Its just frustrating cause I've done the reading,research,etc..its just the making it happen part that unfortunately is taking so long.....In a number of your posts, you indicate that an infection cought within 2 weeks requires a min of 6 wks of treatment based on the bacterias reproduction cycle of 4 wks...Is there a specific logic to that lenght?..Such as adding 4wks of additional treatment to the number of weeks you were infected?..Just wondering, cause I would need at least 7 wks of doxy if that were the case..(ie. infectction caught afer 3wks)....I understand, there is no "golden rule" for treatment as everyone's case can vary but I was just curious if that was how you arrived at it...Good luck everyone, Enjoy the weekend and if your anywhere near me, Stay cool!

 
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