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» LymeNet Flash » Questions and Discussion » Medical Questions » Suggestions Needed

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Author Topic: Suggestions Needed
jamie_gee
Junior Member
Member # 50765

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I'm pretty sure I have Lyme--I was hiking in a high tick area a few weeks ago, and started having symptoms the following week.

The first time I visited my doctor, she said I probably had a virus, but to call back if the symptoms persisted. The symptoms persisted, I called back, and she gave a an Rx for 1 week of doxycycline and ordered a Lyme test.

The test came back negative. I still have some symptoms, though they are not as bad, and my doctor is refusing to give me a refill on the doxy because of the negative test result.

Am I correct that, if this IS Lyme, I should be on the doxy for at least 2 weeks? I took my last pill this morning. Any suggestions on how to get more doxy without too long of a wait?

Thanks!

[ 08-22-2017, 04:32 PM: Message edited by: jamie_gee ]

Posts: 3 | From Harrisburg, PA | Registered: Aug 2017  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Hey jamie...

Sorry to hear about all this mess. The duck that saw you should know better, especially if she is in PA. She is ONE reason people end up with chronic Lyme disease! What a toad!

1. Your test WON'T show positive within the first several weeks after you are bitten because the body doesn't have enough time to mount an antibody response to the organisms.

Even the CDC says this very clearly, so not sure why she is so dense and completely off base with this. Sounds like she is making up rules of her own that are not backed by any science what-so-ever, or even any common sense.

2. When the time is right, Lyme tests still miss 74.9% of those infected. She should know that too!

3. She should also know, ESPECIALLY IN PENNSYLVANIA, that when anyone is suspected of having a "virus" in the summer time that they should suspect Lyme because "viruses" aren't typically causing problems this time of year, but Lyme is known to cause those same symptoms.

4. The fact you were hiking in a highly endemic state for Lyme should have been her first clue and she missed that too? Geeze!

5. You can go to www.TreatTheBite.com and print out the one-page adult treatment guidelines linked right on the front page and either take them to her and make a stink about it, which knowing what I do now is exactly what I'd do....

Or, go elsewhere for proper treatment.

I'd also ask her what medical guidelines she is following when she says and does all this stupid stuff. Because even the worst guidelines that are not only old and outdated, but have been found to be corrupted are better than what she is doing.

6. If you scroll down part way on this page you'll see a section called...

"Some of The Reasons Why Someone Could Have A False-Negative Lyme Test".

https://sites.google.com/site/marylandlyme/lab-tests

See reason number 1 and you should show her this too.

Also numbers 6, 7, 8, 9, 10, 12, 16, 19, 20, 21, 22, 25 and 27 could also be a factor in your case.

That's why I am saying- if I know this stuff, why, as a doctor, doesn't she, especially in the state with the highest number of Lyme disease cases in the country?

Sorry if I sound grumpy. I just tend to get twisted out of shape when I see such ignorance on the part of a doctor and see the possibility of yet another person becoming chronically ill, becoming disabled or dying because these ducks are so freaking stupid!

Ok, TC, deep breath! ~smile~

I don't know if the suggestions on this page below- the first two suggestions- can help, but I'd try them ASAP, then jump on the other doctor's head and give her the what-for.

https://sites.google.com/site/lymedoctors/alternative

I am glad you are taking your health into your own hands. Good for you!

Hope this info helps and you feel better soon!

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20318 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
jamie_gee
Junior Member
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Thanks so much, Tincup! Hoping to get in to see another doctor soon.
Posts: 3 | From Harrisburg, PA | Registered: Aug 2017  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
Member # 9256

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Welcome to Lymenet! PM sent for PA, MD, DC, & CT.

You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

LLMDs are far and few between, unfortunately. You need to go where they are. At least half of all Lyme patients go out-of-state for proper care.

Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/PennsylvaniaLyme/info

Maybe they can help. They would know better about PA.

Some more resources for you (including Support Groups info):
www.lymepa.org [*Note: they are very knowledgeable]

http://whatislyme.com/websites-and-support-groups-by-state/

http://www.lymenet.org/SupportGroups/UnitedStates/Pennsylvania/

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.

Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.

Posts: 8699 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
jamie_gee
Junior Member
Member # 50765

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Thanks hopingpraying. I'll check out those books.

Surprisingly, my doctor did call in a new Rx for doxy, so I feel better about that.

I'm also scheduling an appointment with a LLMD about an hour away, but can't get in for about 3 months. He takes insurance, so I'll just hang in there.

I appreciate all the help here !

Posts: 3 | From Harrisburg, PA | Registered: Aug 2017  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

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I personally would want 4-6 wks of doxy 200mg twice a day if I had Lyme.

Reliable information on Lyme and Coinfections:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/88555

Don't forget the possibility of coinfections!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94530 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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You said.. "Surprisingly, my doctor did call in a new Rx for doxy, so I feel better about that."

Hot dawgs! Hope that helps!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20318 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
   

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