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Newly diagnosed with Lyme??

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Posted 3/5/2021 11:58 PM (GMT -5)
After dealing with lightheadedness, vertigo, light sensitivity, tingling in hands, neck stiffness and the onset of recent fatigue and joint pain I though my dr finally got me an answer after a year ...Lyme disease! Upon the initial test it came back positive for IGM. A blot was then ordered but then came back negative? The blot does say igG bands 23, 41, and 93 are positive though but because it wasn’t 5 only 3 it’s negative. Has anyone else ever dealt with this? Or have any info? I will be seeing a Lyme specialist once they can get me in to further evaluate but was looking for some peice of mind in the meantime. With the symptoms I’m having and testing positive for igm and 3 bands of igG I feel I am Lyme positive. Any insight or information would be greatly appreciated! Just want some answers to calm this overwhelming anxiety
Posted 3/6/2021 12:58 AM (GMT -5)

EverlyGwen88 said...
After dealing with lightheadedness, vertigo, light sensitivity, tingling in hands, neck stiffness and the onset of recent fatigue and joint pain I though my dr finally got me an answer after a year ...Lyme disease! Upon the initial test it came back positive for IGM. A blot was then ordered but then came back negative? The blot does say igG bands 23, 41, and 93 are positive though but because it wasn’t 5 only 3 it’s negative. Has anyone else ever dealt with this? Or have any info? I will be seeing a Lyme specialist once they can get me in to further evaluate but was looking for some peice of mind in the meantime. With the symptoms I’m having and testing positive for igm and 3 bands of igG I feel I am Lyme positive. Any insight or information would be greatly appreciated! Just want some answers to calm this overwhelming anxiety

Hi EverlyGwen - welcome to the forum.

“ The blot does say igG bands 23, 41, and 93 are positive though but because it wasn’t 5 only 3 it’s negative. Has anyone else ever dealt with this? Or have any info?“

Bands 23 and 93 are lyme “specific”
- meaning only lyme will produce those bands.
With your symptoms and those test results - a LLMD would diagnose you with Lyme disease.

So is this a LLMD you will be seeing?
Posted 3/6/2021 7:08 AM (GMT -5)
Yes. Because of Covid and the area I live it’s takin g a bit of time to be scheduled as options are limited. Hoping by the beginning of next week to be seen. In the meantime my family dr has told me to continue my doxycycline which I’ve been on for 7 days now with no improvement yet. (Not sure how long it takes to see change) It’s amazing how Lyme can present itself in so many different ways and the testing is so vague it seems. Thankyou for your response!
Posted 3/6/2021 7:52 AM (GMT -5)
This sounds like a lyme positive test, especially w the IgM bands and the symptoms March. Can take some time to feel better tho, and you may need to try multiple abx.

How long have you had symptoms?
Posted 3/6/2021 8:08 AM (GMT -5)
Symptoms for just over a year and a few months. I distinctly remember the tick bite that caused it all I believe. Never got the rash or flu or anything like that at first. But do remember the bite getting red and swollen and not going away and itching like crazy for a few weeks. Several weeks after that is where it all began now that I look back on it. Thought nothing of it at the time
Posted 3/6/2021 10:45 AM (GMT -5)
You likely also have coinfections. Tick bites transmit more than just borrelia (Lyme). You will likely need more than just doxy. Just trying to prepare you for what’s ahead. If this Lyme doctor you are about to see dismisses Lyme diagnosis, ignores coinfections, or does not treat all suspected infections to symptom resolution or hints at PTLDS (post treatment Lyme disease syndrome), then that doctor is not a true LLMD. That will be your cue to run out of there and find a reputable LLMD.
Posted 3/6/2021 11:06 AM (GMT -5)

EverlyGwen88 said...
Yes. Because of Covid and the area I live it’s takin g a bit of time to be scheduled as options are limited. Hoping by the beginning of next week to be seen. In the meantime my family dr has told me to continue my doxycycline which I’ve been on for 7 days now with no improvement yet. (Not sure how long it takes to see change) It’s amazing how Lyme can present itself in so many different ways and the testing is so vague it seems. Thankyou for your response!

It can take longer for improvements with chronic Lyme - also two or more abx are recommended for treating it.
Posted 3/6/2021 11:08 AM (GMT -5)
... and I agree with what WalkingbyFaith posted.
Posted 3/6/2021 11:41 AM (GMT -5)
Thankyou all for continued information! Another symptom I’ve had is panic and anxiety which I’ve never had in my life. Just getting into and reading on this forum is incredibly helpful.
Posted 3/6/2021 12:46 PM (GMT -5)

EverlyGwen88 said...
Thankyou all for continued information! Another symptom I’ve had is panic and anxiety which I’ve never had in my life. Just getting into and reading on this forum is incredibly helpful.

I also got anxiety from lyme - and I had never had it prior to lyme.
It’s gone now after treating... well almost - I’d say I’m 95% better regarding the anxiety.

Keep posting/asking questions
Posted 3/6/2021 4:22 PM (GMT -5)
Is there any recommendations on finding a reputable LLMD? I researched the individual I will be seeing and he is a infectious disease specialist who has plenty of good reviews online from Lyme patients, with some bad reviews as well. (I think you’ll get that with anything?) just want to have a back up plan in place so I don’t spend more time waiting around. I’m located in northern Wisconsin, right on the border of the upper peninsula of MI if that helps
Posted 3/6/2021 5:26 PM (GMT -5)
I have a list of llmd’s - don’t remember what I have listed for Wisconsin. You can email me if you’re interested.

Yes, an experienced LLMD can also have some bad reviews -
You could call the office and ask some questions:

1) Do they treat chronic Lyme disease.
2) Do they also treat the common coinfections - specifically Bartonella, Babesia.
3) Do they prescribe a combination of antibiotics to treat vs just one.
4) Do they also prescribe herbs, vitamins etc. for support.
5) Do they have labs done on a monthly basis - to check your liver and kidney function, hematology etc.
Posted 3/6/2021 5:56 PM (GMT -5)
I sent you an email. Thankyou!!
Posted 3/6/2021 6:35 PM (GMT -5)
You said this is an Infectious Disease doctor?

Most of them follow IDSA guidelines. LLMD’s follow ILADS guidelines.

You might want to start another post - Looking for LLMD in Wisconsin. I am pretty sure there are some other members here from Wisconsin. I’ll search the forum and see if I can find any previous posts.

I found a very old post (2010) where someone mentioned a Dr. M in Fon du Lac.

Post Edited (WalkingbyFaith) : 3/6/2021 4:58:41 PM (GMT-7)

Posted 3/6/2021 6:48 PM (GMT -5)
He is an infectious disease dr correct. I will start a new forum. I’d definitely like to keep options open and have more than one plan in place
Posted 3/6/2021 10:49 PM (GMT -5)
Being bored, I decided to see if I could find this Dr. M. I think this is him. Has some good reviews online. Hopefully you will here from some people who have experience with him.

https://foxvalleywellness.com/doctors.php
Posted 3/7/2021 12:32 AM (GMT -5)
Just want to mention that being an Infectious disease dr doesn’t necessarily mean they will follow IDSA guidelines but they may.
This goes for other lyme docs as well. Some will advertise they treat chronic Lyme - but will follow IDSA guidelines.

My doc (LLMD) happens to be an ID doc.

I think if you ask them the questions I suggested may help to discern if he is truly lyme literate.

Sorry - I haven’t read your email yet - had a busy afternoon/evening
Posted 3/7/2021 8:00 AM (GMT -5)
Having to wait all weekend and possibly a few more days seems like a death sentence. All signs point to lyme but I still can’t get out of my head that “maybe it’s something else” and am giving myself the worst anxiety I’ve ever had. I don’t think I’ve ever felt this helpless. The waiting game while doxy hasn’t yet made a difference is a mental warfare!
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