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» LymeNet Flash » Questions and Discussion » Medical Questions » Newbie

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Author Topic: Newbie
Kyle Bell
Junior Member
Member # 52060

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Hi All,
Been suffering with mixed symptoms since back in February after I quit drinking alcohol.(lots of beer)I have been a heavy drinker for 12+ years.

Through the summer started exercising and eating right hoping it was just some lifestyle changes needed to be made.

Lost 40lbs and was able to run a 5k. Most of my symptoms have been brain fog, stomach(thinking SIBO/Candidia), anxiety, sleep problems, joint pain and depression up until a 2 months ago when I started getting creepy crawly feelings, numbness, and burning in legs.

Along with sensitivity to cold to the point where my hands or feet get cold it takes along time to warm them back up if at all. It got so bad I had to go to the emergency room cause I couldn't even stand up at work, very scary.

They ran all tests including blood and ekg everything looks fine. My doctor and I both seem to think this is Lyme, blood tests are not gonna be in for another few days so he has me on doxy and I'm about 3 days into it and I already feel better.

He also prescribed some steroids which I think was just for pain purposes and I have read that that may speed up the growth of the bacteria and interfere with the abx.

My question is should I take the steroids and other than anti inflammatory diet is there anything else I should be doing along with the doxy.

Any advice would be very appreciated getting a little scared with all this new information I have been learning so far. Thanks!

**edited for easier reading .. many of us have difficulty reading large blocks of print**

[ 12-08-2019, 10:37 PM: Message edited by: Lymetoo ]

Posts: 6 | From East Haddam | Registered: Dec 2019  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Personally, I would NOT take steroids at this point. It could make the lyme go deep.

as for diet .. TAKE THE DOXY WITH FOOD!!! Don't believe what the prescription insert says. If you don't eat enough food when taking the doxy, you will have a damaged stomach.

Do not lie down for at least 30 min after taking the doxy.

Take probiotics two hours away from any antibiotics.

Do not eat very much sugar or fruit. It can help grow yeast.

TONS OF INFO FOR YOU.....

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/88555?

You may also want to begin your search for a real LLMD so that you will have the best chance for recovery. It can take weeks or months to get to see an LLMD.

http://flash.lymenet.org/scripts/ultimatebb.cgi/forum/2?

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

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Kyle Bell
Junior Member
Member # 52060

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Thanks for the response I appreciate it. The video with dr H was great. My doctor gave me his book to read while I’m outta work. My dosage of doxy is 100mg twice a day and saw and read some people were on 200mg twice day?

(editing out dr's last name per Lymenet T&C rules - see below)

[ 12-09-2019, 04:16 PM: Message edited by: Robin123 ]

Posts: 6 | From East Haddam | Registered: Dec 2019  |  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 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.

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.

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

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

Some more resources for you (including Support Groups info):

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. View "Under Our Skin" and "Under Our Skin2: Emergence". Check your local library or buy it online.

Btw - I know you are new to Lymenet, but you should not use your real name, because this is a public forum with all sorts of people on it. Read this link about it:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=011844;p=0

To remove your name from the signature line, click on "Edit Profile" under Lymenet Flash in the top middle section of the Lymenet page.

Click on "Edit Profile" on the left-hand side, scroll down to "Profile Fields" then down to "Signature". Make your changes, then click "Update Profile".

You would have to contact one of the moderators to ask how to change your username.

Posts: 8699 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme?

Risks, "turning chronic" & potential long term damage discussed. Links.
-

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Kyle Bell
Junior Member
Member # 52060

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Thanks guys, so your saying that I need to up the dosage which my doctor will give me. I know numerous people that have been treated by specialist that have been covered by insurance in CT I just need to find one that is covered by my provider because money is an obstacle.

I am currently reading why can't I get better that was provided by my doctor so at least he has some clue of how serious this is.

I will not take the steroids and have put myself on an autoimmune paleo diet. Another question about the abx is im able to walk around and be mobile now, for days I couldn't walk 10 feet with out getting tired so are the abx responsible already for me feeling better or is it just based on rest?

I have not come across anything on exercise as well should I be doing at least some light treadmill or should I be just resting while I out of work for 2 weeks.

**edited for easier reading...please leave space between every two sentences**

[ 12-09-2019, 06:13 PM: Message edited by: Lymetoo ]

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Kyle Bell
Junior Member
Member # 52060

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Also I have not seen and blood tests yet so I feel there's only so much my doctor and anyone else can do till those are back.
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

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You might have missed this link in Hopingandpraying's post;
http://www.lymenet.org/BurrGuide200810.pdf

It was written by the top LLMD in the world, and although it's over 10 years old, it still holds true today. Copy and paste so you can refer back to it from time to time. It contains detailed diagnostic treatment protocols, diet, exercise, herbs, antimicrobials, antiparasitics, life style choices, ect.

Welcome to Lymenet.

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Kyle Bell
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Awesome thanks! you guys are the best!
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hopingandpraying
Frequent Contributor (5K+ posts)
Member # 9256

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Contact the CT Lyme Support groups I gave you to ask if they know someone who takes insurance, but most Lyme docs don't.

Here are some links for financial help info:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=023463;p=0

http://www.lduc.org/lyme-disease-resources

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map1131
Frequent Contributor (5K+ posts)
Member # 2022

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Don't take a Lyme test while doing antibiotics. It can cause a false negative or screw up the test.

It is recommended you be off antibiotics for 10-14 days. But the good thing is these antibiotics could/should help get your anti-bodies get going.

In other words, many folks have done antibiotics, came off them and then tested positive. Remember the Lyme Western Blot test is looking for anti-bodies. Not the actual bacteria.

If you can get your doctor to up that dose to 2-200 mg a day for 30 days. Then come off them for better testing.

A two week break from antibiotics won't make any difference in your future outcome. But you do need a plan in place after testing.

Be sure to get the FULL test report from your doctor. Don't let the doctor determine if the test is negative or positive. Most docs don't know how to read the results based on CDC input/ writing on the test. This is based on we know how the system has failed folks for years.

The folks on here can help you understand the test results.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Kyle Bell
Junior Member
Member # 52060

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I have an appointment with a Lyme specialist that is covered by insurance on Jan 6th. I have upped my dose of doxy to 200mg twice a day, they will be doing testing and the woman on the phone told me to keep doing what I’m doing till then.

I had blood tests done in ER before antibiotics so hopefully that helps haven’t seen results yet. My symptoms went from not even being able to get out of bed and move around to now I am running simple errands and light exercise.

My symptoms I’m finding are all related to diet. Had a flare up today and the only thing different I’ve eaten was sweet potato and a beef stock that is on the spicy side cause I put too much peppercorns in it.

It’s all inflammation with me cause i thing I have a damaged stomach

***Kyle, please put more space between your sentences...thanks***

[ 12-14-2019, 05:03 PM: Message edited by: Lymetoo ]

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hopingandpraying
Frequent Contributor (5K+ posts)
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Glad to hear you will be seeing a Lyme specialist and hope you get the help you need.

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 the "Edit Post" tab at the top of your post, make your changes, then click "Edit Post". Thanks.

Prayers to/for you on your healing journey.

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