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» LymeNet Flash » Questions and Discussion » Medical Questions » Possible Lyme, Advice Needed

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Author Topic: Possible Lyme, Advice Needed
Lyme.in.CT
Junior Member
Member # 52177

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I was bitten by a tick three weeks ago. There are ticks with Lyme on the property (my dog was infected). I discovered the tick prior to engorgement and removed it, no subsequent rash, but strong nausea and brain fog for 24 hours after discovery.

The brain fog has come and gone over the last few weeks. Then 5 days ago, I started breaking out in a rash on my hands, neck, legs and arms, roughly 5-10 quarter to half-dollar sized spots, with central fluid bubbles, for the first few days, which look like disseminated Lyme rash based on pictures I've seen. Then they started appearing in little clusters, which finally presented a bull's eye pattern three days later.

I saw a tele-health ER doctor a week ago, who prescribed doxy 100mg 3/day. Been under treatment for six days, and new rashes continue to appear. Saw a PCP two days ago and he ordered numerous blood tests for autoimmune markers and Lyme. All but the Lyme results are in, and are negative.

Last night I had severe pain radiating from my neck into my right eye-socket, followed by a syncopal (feinting) episode. Trip to the ER revealed nothing: standard blood work / CT scan were all normal. I have longstanding spinal issues, so it's possible that the neck pain and syncopal episode are unrelated.

Now my eye is swollen shut from the allergic reaction and my PCP is recommending steroids. I scanned through the Burr guide briefly and caught the no steroids guidance.

Here are a few shots of more recent rash presentations on 1) my stomach, one day after appearance, 2) my arm, two days after appearance, and 3) same arm, four days after, showing a bull's-eye pattern.

http://rickyray.co/wp-content/uploads/2020/08/Stomach.jpeg
http://rickyray.co/wp-content/uploads/2020/08/ArmDay2.jpeg
http://rickyray.co/wp-content/uploads/2020/08/ArmDay4-rotated.jpg

So, a few questions:

1) Is it okay to take the steroids since I'm on the doxy?

2) If it is Lyme, should the doxy be working by now and stopping the rash?

3) The ER doctor last night suggested visiting an allergist or infectious diseases doctor, but it seems finding an LLMD is more important. Could anyone recommend some in the CT/NYC area?

4) Is there anything else I should be doing right now to help the situation?

[ 08-14-2020, 10:09 AM: Message edited by: Lyme.in.CT ]

Posts: 1 | From Danbury, CT | Registered: Aug 2020  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

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From what I've read steroids should be avoided in the lyme community.

60 days a minimum for Doxy I've heard too but mainstream docs will never budge on that. An LLMD can.

Lyme tests are extremely inaccurate to begin with, a negative means nothing.

An LLMD is the way to go, yes! I am from MA, not CT so I don't know of any there. From now till your appt keep your immune system up. A friend of mine who had lyme always suggests this, crank up the Vit D3 and K2.

Posts: 171 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

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Welcome to Lymenet Lyme.in.CT

Wow, those pics show something serious is going on in your body. I am not a doctor but along with your clinical symptoms and being in a tick epidemic region, I would say you contracted Lyme disease. By the time the rash appears, it has already started to spread.

Forget the standard Lyme tests!
Never depend on Lyme tests within a month of a tick bite. Nearly everyone will test negative for Lyme disease within the 1 - 4 weeks after being bitten by a Lyme infected tick. The reason why Lyme tests are garbage is because it tests for antibodies your body produces, not the actual DNA of the bacteria. It takes your body 4 weeks to mount an antibody response so the tests are worthless.

Do not waste your time on an allergist, infectious disease doctor or any other doctor who is not a Lyme Litterate Medical Doctor (LLMD) by ILADS (International Lyme and Associated Diseases.

Everyone on Lymenet can attest that living with chronic Lyme disease completely changed life as we knew it. If only we had been diagnosised and treated sooner. . . .

There is a doctor in NYCity who will see recent tick bite patients ASAP as her schedule will allow. I will send you a private message for her and for LLMD's in the NYCity region.

Praying you get proper and aggressive treatment immediately so you can have a speedy recovery 💚💚💚💚

Treat The Bite
https://drive.google.com/file/d/1A2s_ASxnbOAVgjXH2NYDrJgxYCxsvsPz/view

ILADS Guidelines
https://www.ilads.org/patient-care/ilads-treatment-guidelines/

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hopingandpraying
Frequent Contributor (5K+ posts)
Member # 9256

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Welcome to Lymenet! PM sent for 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

I would highly recommend you read & familiarize yourself with all the valuable information found in them.

Steroids are contraindicated in Lyme Disease, because they depress the immune system thereby allowing the bacteria, Borrelia burgdorferi, to be entrenched deeper into the body.

Also, the dosage of Doxy you are taking is too low, based on the guidelines.

Stay away from infectious disease doctors. Read the following article, ""Two Standards of Care Revisited" to better understand the politics surrounding Lyme Disease treatment:

https://www.lymedisease.org/lymepolicywonk-two-standards-of-care-revisited-2/

Here is an excellent link found on Lymenet about "Important Information About Lyme and Co-infections"for you to also read:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=088555;p=0

Unfortunately, LLMDs are far and few between. You need to go where they are.

Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:

"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.

Contact the CT Lyme Support Groups. They would know better about CT.

http://whatislyme.com/lyme-in-connecticut/

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

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "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 them used online.

View "Under Our Skin"
https://m.youtube.com/watch?v=2JgR_Jfbhv8&noapp=1&client=mv-google

and "Under Our Skin2: Emergence"
https://drive.google.com/open?id=1iAzRksyHfSNWBGsHcugYl9a8WQ9TnDCW

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 tab, make your changes, then click "Edit Post". Thanks.

Posts: 8727 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
hiker53
Frequent Contributor (5K+ posts)
Member # 6046

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No steroids if it’s Lyme disease. Right after my symptoms began occurring and I didn’t know better the doctor put me on steroids and boy did my symptoms get worse

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 6398 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
   

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