posted
So, last week I had a couple days of feeling terrible (super high tension in back and neck, severe headaches, fatigue, dehydration)
I scheduled a doctor visit and before I left the house my wife read an article and said my symptoms matched up with Lyme's, and she asked me to tell the doc to test for it.
After the doc looked at me like I was crazy when I told her to test for this, she did so. My results came back as the following:
IGG P66 AB PRESENT. The other 9 that were run were absent. For Lyme IgM Wb, IGM P41,39,23 AB were all present and led to a positive test result.
The doc prescribed me doxycycline hyclate 100-mg for 14 days (or 28 tablets). I wanted to know if this is the correct first step or should I reach out to another doc.
There is so much information out there that is different from site to site, not sure what the best solution is. Thanks in advance for all of the advice!
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Breaking up your post for easier reading for many here -
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
That dose is too weak. You really need to find a lyme literate MD FAST (LLMD). Go to SEEKING A DR, or www.lymediseaseassociation.org. LLMDs are the only docs, and I do mean ONLY docs who know how to treat lyme disease properly. Whatever you do, DON'T waste your time with an ID doc (they're clueless).
Either way, verify the doc here in SEEKING to see what others say.
The docs are usually booked for months, but ask to be put on a cancellation list. I was able to be seen in 3 days doing this. Make yourself available when they call you.
Welcome to Lymenet, you're in the right place!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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hiker53
Frequent Contributor (5K+ posts)
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posted
Your doxycycline should be at least 200 mg twice at day (total of 400 mg).
If you scroll up in medical you will see a thread on Dr. B's guidelines. Print that off and take to a doctor as soon as possible.
Make sure you stay out of the sun while on doxy or you will really burn.
Welcome to Lymenet.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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Yes, I would want 200 mg twice a day for 4-6 weeks to be sure to knock this OUT right away. There is a brief window of opportunity to get it right the first time.
There are a few LLMD's in NC .. nothing to rave about but they are available.
posted
Thank you all for the quick reply! I have emailed the doctor to see if she can change the prescription. I wanted to know if I should at least get started with the meds she has given me in the meantime and also could this be misdiagnosed? I'm assuming since all three of the IGM were present then it is likely not.
I am asking because I had a root canal done a few years back and this weekend it really started hurting, I have read a few places that this could cause a false positive but am unsure if this is true.
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Breaking up your post for easier reading for many here -
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
No chance, you're positive. There is no false positive. I have the same bands you have. You don't want to go down the path I went. I would get started with the meds asap. Ideally 400mg is what the lyme docs prescribe.
Your doc is following some antiquated guidelines and won't know what a LLMD knows (not your doc's fault). You want an LLMD who is ILADs trained. They're cutting edge (International Lyme and Associated Diseases Society).
I remember coming here when someone thought I had lyme. I thought, no way, not possible. Big fat mistake on my part.
Listen to what people tell you here. They are all trying to help. We are all paying it forward.
Lyme loves the teeth, especially where you've had work done in the past (root canals, crowns, etc).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
You might want to print out Dr. B's guidelines (under Medical) like Hiker suggested, and take them to your doc today. That may be the only way your doc will up your dose.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Yes, I am looking for a LLMD currently, I just asked the question, maybe as false hope... Since all three were present I didn't think so. Strangest thing is I can't even remember the last time I found a tick on me. Either way, hope the current doc will increase the antibiotics until I can find a LLMD
Posts: 4 | From Charlotte, nc | Registered: Jun 2015
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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.
Unfortunately, LLMDs are far and few between. You need to go where they are.
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":
I would also recommend you write a new post in "Seeking a Doctor" and title it "Need LLMD in NC".
Btw - 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 on the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I know a lyme doctor in Maryland that can see you in a few days. Let me know if you are interested in the name.
Once you have the first in-person visit, you can do telephone or Skype visits. At least half of all lyme patients have to go out of state for their treatment.
This doc will be better than anybody south of Washington D.C. It is a rare opportunity to get good treatment quickly.
I will be shocked if you can get your doctor to increase the dose of doxy. They are all following the IDSA guidelines and generally will NOT deviate. You have to get to a lyme specialist to get what you need.
Posts: 9931 | From Maryland | Registered: Dec 2007
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Meanwhile, take the doxy you have been prescribed.
You are blessed to have gotten a diagnosis. I never saw the tick nor had the rash and it took 2 years. Hug your wife!!!
Praying for you.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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This doc will be better than anybody south of Washington D.C. It is a rare opportunity to get good treatment quickly.
I will be shocked if you can get your doctor to increase the dose of doxy. They are all following the IDSA guidelines and generally will NOT deviate. You have to get to a lyme specialist to get what you need.
- TF is RIGHT!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Bryann, forgot to tell you, I've taken 100mg before twice a day. It helped me but the 200 2x/day is better. You can always take what you have until you get there.
Also, most of us who learned the hard way about average lyme docs switched to better docs, and travel out of state to see them (common). Hiker's right, hug your wife!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
TF, I would definitely be intrested in the doctor in MD, I am originally from NOVA, so it wouldn't be a big issue.
Started taking the doxy that was prescribed after my PCP said that 100mg was the treatment she would like to go with. So am still looking into some LLMDs.
In the meantime, I have given my wife a big hug and have come to realize, no matter what, she IS always right!
Posts: 4 | From Charlotte, nc | Registered: Jun 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sent you the name.
Posts: 9931 | From Maryland | Registered: Dec 2007
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