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» LymeNet Flash » Questions and Discussion » Medical Questions » "Newbie - Need Advice"

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Author Topic: "Newbie - Need Advice"
Mommyx5
Junior Member
Member # 45881

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Here are symptoms listing and below that treatment and test results.

Headaches
Fatigue sometimes extreme
Dizziness
Confusion
Memory loss
Hair loss
Muscle and joint pain and swelling
Tremors
tingling in legs and arms
Neuropathy in toes and fingers
Forgetting where I am
Heat intolerance
Inability to walk and move
Unexplained weight gain
Double vision and dept perception issues
severe anger and mood changes
Heart Palpitations
Shortness of breath
Feeling as though I am moving when sitting still
Vertigo
Motion sickness
weakness

Treatment so far

90 days of Doxycycline to start
4 weeks of IV rocephin
3 weeks Doxy and Flagyl
Gabapentin still
Naproxen still
Teasel on and off
Pokeberry for pain on and off
off meds for 5 1/2 weeks. Relapsed three weeks ago
Back on Doxycycline Gabapentin and Naproxen daily

Testing

Elisa was a .91

Western had reacted to a band significant with Lyme disease...this test was done while on Doxy the first time so 90 days of meds

MRI negative

EEG normal

ANA titer for Lupus normal negative

Antibodies testing was super high

Think I covered everything....looking for advice.

Posts: 4 | From Osceola Mills Pa | Registered: May 2015  |  IP: Logged | Report this post to a Moderator
shoeless joe
LymeNet Contributor
Member # 45835

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Keep your carbohydrates to a minimum and take probiotics hours after your ATBX. Yeast and gut problems can be as bad as lyme
Posts: 227 | From fairhaven ma | Registered: May 2015  |  IP: Logged | Report this post to a Moderator
Robin123
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Member # 9197

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Good to see that you're in treatment!

You should get your thyroid checked out - TSH and T3 levels - if low in thyroid, you can supplement - helps with metabolism, feeling more present. Good supplements to take are Armour thyroid and Naturethroid.

For the vision issue, I drink mangosteen juice - it's an anti-inflammatory juice that scarfs up free radicals created by all the inflammation. It stops all my Lyme eye symptoms. You can find it in healthfood stores and online. The version I like is called Mango-Xan, as it is the most tart. Just know everyone is different in how they respond to any remedy.

For muscle and joint pain, I take turmeric. I get it in bulk and dip 00 size capsules into it, take a couple a day. It works pretty fast to diminish pain.

Area support groups listed with Support Groups at the left here - click on United States, Pennsylvania.

Posts: 13041 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Why did you stop the abx treatment? Do you have an LLMD?

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

Posts: 95250 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Mommyx5
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Hello there and thanks for the replies. I do keep carbs to minimum at all times per diet. I have probiotics for while on abx....have had candida...its awful!!
Thyroid levels are fine. That was something that we keep eye on all the time.
We stopped abx since my doc does not treat long term. I did not want to treat long term. I got better. But after having relapse and reading Burrascanos treatment protocol I see why I relapsed. Since my relapse my doc wants me to have spinal tap, not going to do that. have never spoke to anyone that has had good results with that. so looking for new doc. going to a chiropractor/wellness doc next week.

Posts: 4 | From Osceola Mills Pa | Registered: May 2015  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Thank goodness you read his guidelines. We can help you find an LLMD if you decide to pursue treatment.

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

No way I would do a spinal tap .. esp for a DR who hasn't got a clue what to do with the results.

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

Posts: 95250 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
soccermama
LymeNet Contributor
Member # 35101

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My word of advice...before you start investing alot of money in supplements and with doctors, get a list of good LLMD's who have a track record of getting their patients to 100%

TF, who is a member on this forum has a good list. Those LLMD's will be more expensive but ultimately in the long run you will have spent less money because they know what they are doing.

These doctors also know how to treat lyme if it is chronic or if you do not respond well to "standard" treatment.

I wish that someone had advised me that way. While I went to a good LLMD, she did not have the experience to get me well. Now my resources are limited.

Just another thought, most LLMD's will tell you that they follow Burrascano's guidelines but in practice, that is not the case. That is why it is important to get a name of an LLMD who has a HISTORY of getting his patients well.

Just my opinion.....

Posts: 538 | From kentucky | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691

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I second what soccerrmama said. We wasted precious money on supplements and various things before realizing that a LLMD is what we truly needed. We felt like we couldn't afford it, but looking back now we realize we couldn't NOT afford it.

It has been a struggle and we have had to make sacrifices but it's worth it in the end.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1470 | From Tennessee | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
KH111
LymeNet Contributor
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If you have that many symptoms you most likely have a co-infection as well and what you have taken so far has only treated lyme. With the shortness of breath symptom, you probably have babesia.

You need to get to a real LLMD and get tested for all co-infections, such as babesia and bartonella. The main reason why people relapse is because they have a co-infection and still need treatment. Go to the seeking a doctor forum and find a good LLMD in your area.

Do not waste time, get it done.

Posts: 160 | From somewhere | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
WPinVA
Frequent Contributor (1K+ posts)
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It's a good sign that you responded to the initial round of treatment. Please find a LLMD so that you can get evaluated for co-infections and keep going.
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Nula
LymeNet Contributor
Member # 38409

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A lot of your symptoms sound like co-infections:

BABESIA
Headaches
Fatigue sometimes extreme
Shortness of breath
Feeling as though I am moving when sitting still
Vertigo
Motion sickness
weakness

BARTONELLA
severe anger and mood changes

Doxycycline - hits Lyme (and possibly Babesia)
Rocephin - hits Lyme
Teasel is good but doesn't cross the blood-brain barrier as far as I know

Treatment so far

I think you need to treat co-infections: Mycoplasma, Ehrlichia - but especially Babesia and Bartonella.

--------------------
I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ...

Posts: 235 | From Europe | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
   

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