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Posted 8/11/2018 11:56 AM (GMT -7)
Hi all,

I just found out about this Lyme forum community. I was diagnosed with a very weak IgM for Lyme by Igenex test. I started having Lyme symptoms for last 3-4 months now which prompted me to seek testing and treatment.

My doctor has put me on Doxy 100mg/daily x2, Tindamax 500 mg/daily x2, and Rifampin 300 mg/daily x2.

I'm experiencing twitching, burning skin but no fever (never above 98.6) but feel my body hot and fatigue.
Fatigue increases after food.

I wanted to know what's the best course of treatment for my situation?
Posted 8/11/2018 12:51 PM (GMT -7)
Hi drop!

Welcome to our community! I'm so glad you found us!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​

You can start now with detoxing, as it's the toxins that drive our symptoms more than the infections themselves. Eating as healthy as you can afford to, including organics whenever possible and avoiding sugar and highly processed foods will help provide your body with the right type of "fuel" for it to heal.

That sounds like neurological pain...how long have you been in treatment for? Are you taking any supportive supplements in addition to the antibacterials? Absolutely for sure at a minimum you want to be on supplements. My number one recommendation would be high doses of probiotics spaced away from the antibiotics.

There are a lot of helpful and knowledgeable members on here so feel free to ask any questions or come here with concerns.

`beth
Posted 8/11/2018 1:12 PM (GMT -7)
Hi opugirl,

Glad to hear from someone who understands Lyme! I was really worried about this.

When I visited the Lyme doctor for the first time, about 2 months back, he started me on Doxy (100mg) and Rifampin (300mg) twice a day. I took those for about 17 days and started feeling better after about 2 weeks and cutting out sugar from my diet.
But after 17 days, I received a pending blood test report from Labcorp which showed negative for Lyme. Since I was unsure of my Lyme status I stopped my antibiotics and decided to get tested by Igenex. I got myself tested by Igenex again to be sure and when this new report came back positive, which was about 2 weeks back, I started again on:
Doxy - 100 mg/daily x2
Tindamax - 500 mg/daily x2
Rifampin - 300 mg/daily x2 (only started this about 3 days back, as I was told by my doctor to add this after two weeks of Doxy and Tindamax)

Another full panel test report showed high IgG levels of CMV and EBV so I've started taking Acyclovir x2 daily.

These days I feel burning skin but no fever and a burning sensation after ejaculating. I got myself tested and don't have any STD.

Not sure what the best treatment for me would be. I'm very worried about my treatment trajectory.
Posted 8/11/2018 1:25 PM (GMT -7)
Haha thats funny, not haha funny - but trust me you will be able to laugh at this stuff hopefully in a bit. I made my husband get tested for STD's even though we had been married for several years when my lyme test came back negative through labcorp...

That is a lot of antibiotics. If you can handle it go for it but keep in mind to LISTEN TO YOUR BODY. I could only ever take two abx at one time. The herbs did not bother me so much.

You could start a thread "Top tips for a lyme newbie" and I'm sure you will get loads of suggestions. I would suggest #1 DIET - clean as possible with a few cheats being ok. I basically did a paleo diet and that worked well for me. #2 Top 5 supplements for me were Probiotics, Vitamin C, Vitamin Bs, japanese knotweed, and turmeric.

Its okay to be worried...I would say if Plan A doesn't work or give you the expectations....prepare now for a plan B...a plan C. For me that was a naturopath/herbs....different doctors... etc.

Be patient drop!
Posted 8/11/2018 1:53 PM (GMT -7)
While cutting out my sugar is painful (no more daily brownie) I can do it. But cutting out bread and all carbs is probably not even possible. I'm not sure how bad this is in terms of treatment. How often can you cheat?
Posted 8/11/2018 2:12 PM (GMT -7)
Hey! I have been lurking for a month or so and only decided to join because you are one of the few that has mentioned burning skin.

I just found out a month ago I had lyme, after multiple doctors - misdiagnosed EBV / MONO and all sorts. The only way I found it was I went through the normal being sick blah blah blah - but then my GI track has just stayed screwed up. Constipation / Diarrhea - and the sorts. So I kept pestering and figured it out finally.

BUT - I also have (I wouldn't say "burning" skin) warm skin. It's mostly my forhead / cheeks (Face area) ... And then my elbows every now and then. It's like you said - never a fever - just warm and gets annoying. (And it's not all the time - just here and there - some days are better than others - seems that's how lyme works for everything ha!)

My Lyme doc - told me it is most likely the parasites we are killing and the toxins they are releasing in my body. Definitely following this thread tho! :D

Post Edited (BossJ) : 8/11/2018 3:16:38 PM (GMT-6)

Posted 8/11/2018 2:20 PM (GMT -7)
Oh also - have you tried Epson Salt baths? They seem to immediately take the heat off of me (I mean other than the bath is hot) but it gives me a longer window of detoxing me through the epson salt and then my body feels normal again.
Posted 8/11/2018 3:40 PM (GMT -7)
For me cutting out the pasta/breads was more because I have chronic yeast. I was pretty disciplined so I maybe lightly cheated twice a week. There are work arounds. I take raw garlic currently cuz it keeps my yeast at bay but I LOVE me some pasta...lol loaded with garlic of course.
Posted 8/11/2018 4:26 PM (GMT -7)
I was totally convinced I had HSV and that was causing my skin burning from the waist down. All negative after multiple blood tests, western blot, and swabs. My mind is still stuck on it after 10 months and has a hard time transitioning to this potentially being Lyme through my positive Igenex IGM. Haven't been able to see a lyme doctor yet.

My skin flares up and turns red when pressure is applied. It also tingles and itches-- public hair area is super annoyed. Not really sure what to make of it. I was negative for EBV and CMV. Maybe the burning skin really is a Lyme symptom.
Posted 8/11/2018 4:30 PM (GMT -7)

drop11 said...
Hi all,

I just found out about this Lyme forum community. I was diagnosed with a very weak IgM for Lyme by Igenex test. I started having Lyme symptoms for last 3-4 months now which prompted me to seek testing and treatment.

My doctor has put me on Doxy 100mg/daily x2, Tindamax 500 mg/daily x2, and Rifampin 300 mg/daily x2.

I'm experiencing twitching, burning skin but no fever (never above 98.6) but feel my body hot and fatigue.
Fatigue increases after food.

I wanted to know what's the best course of treatment for my situation?

Well that a GI issues are my only main symptoms. But I also have a parasites and metal toxins - but mine is only in the face area normally. It's weird.
Posted 8/11/2018 4:36 PM (GMT -7)

BossJ said...

drop11 said...
Hi all,

I just found out about this Lyme forum community. I was diagnosed with a very weak IgM for Lyme by Igenex test. I started having Lyme symptoms for last 3-4 months now which prompted me to seek testing and treatment.

My doctor has put me on Doxy 100mg/daily x2, Tindamax 500 mg/daily x2, and Rifampin 300 mg/daily x2.

I'm experiencing twitching, burning skin but no fever (never above 98.6) but feel my body hot and fatigue.
Fatigue increases after food.

I wanted to know what's the best course of treatment for my situation?

Well that a GI issues are my only main symptoms. But I also have a parasites and metal toxins - but mine is only in the face area normally. It's weird.

How long does your body feel cool after the bath?
Posted 8/11/2018 4:57 PM (GMT -7)
It usually goes away. And then it'll come back randomly. Next day - 2 days later. I've noticed tho when I'm detoxing or herxing (if that's the right term?) - Epson salt baths do wonders for me. Will immediately make me feel normal. Just a matter of time before the symptoms come back.

That's what soothes me for now.

Oh and I take them for about 15 mins. As needed... Just drink lots of water during the day.
Posted 8/11/2018 9:39 PM (GMT -7)
The warm skin on your face is called facial flushing and is a fairly common Lyme symptom but sometimes doesn't show up until you start treatment.

Tingling or burning sensations is neuropathy which is even more common especially in the legs and feet.

Burning upon ejac is not very common though I sometimes get that with testicular pain and always have burning upon urination. Been to eight diff. urologists with no answers. Last one said maybe it's the Lyme. Sure makes sex a joy.
Posted 8/11/2018 9:56 PM (GMT -7)
I wonder how one finds out that they have a warm skin on face? When I touch my face with my hands, I feel the warm/heat but I'm not sure if that is because my hands are warm or is that my face skin.
Posted 8/12/2018 5:11 AM (GMT -7)

ToddPaul said...
The warm skin on your face is called facial flushing and is a fairly common Lyme symptom but sometimes doesn't show up until you start treatment.

Tingling or burning sensations is neuropathy which is even more common especially in the legs and feet.

Burning upon ejac is not very common though I sometimes get that with testicular pain and always have burning upon urination. Been to eight diff. urologists with no answers. Last one said maybe it's the Lyme. Sure makes sex a joy.

Thanks for clarifying that! I'm guessing there's no way to control facial flushing?
Posted 8/12/2018 5:14 AM (GMT -7)

drop11 said...
I wonder how one finds out that they have a warm skin on face? When I touch my face with my hands, I feel the warm/heat but I'm not sure if that is because my hands are warm or is that my face skin.

For me, I actually feel it on my face without touching it. My face just feels warm - my ears have done it my entire life - when I get stressed or anxious. It feels exactly like that but my forehead and cheeks, mostly.
Posted 8/12/2018 9:30 AM (GMT -7)
I wonder if there is a way to measure the amount of burning skin. Clearly, thermometer is not of much use because when I use it to measure my body temperature, it always gives less than 98.6.
Posted 8/12/2018 11:10 AM (GMT -7)

drop11 said...
I wonder if there is a way to measure the amount of burning skin. Clearly, thermometer is not of much use because when I use it to measure my body temperature, it always gives less than 98.6.

Mine does as well.
Posted 8/12/2018 9:45 PM (GMT -7)
I'll try to post updates on this thread about my developments.
Posted 12/30/2018 9:12 AM (GMT -7)
So it's been 4 months since I last posted here.
In last 4 months, my symptoms improved gradually.

At one point, for a couple of days or maybe around 1 week, I had no burning skin or twitches or burning while ejaculation. It seemed like it was all gone but then it returned in about 2-3 weeks after that.

Surprisingly, when my symptoms had almost completely disappeared, I had stopped taking my antibiotics for close to 2-3 weeks. I wonder if there was a delayed effect of the anti-biotics that I was seeing that improved the symptoms and then since I wasn't taking anti-biotics, the symptoms returned? Anyone, experienced this before?
Posted 12/30/2018 9:56 AM (GMT -7)
My advice is to get off of the antibiotics before they ruin what immune system you have left. If it's been 4 months you are way past the antibiotics stage theose sukcer are hidden!!! Start working on building your gut back and in essence builds your immune system. Your age, stress, health (previously) DIET are all of the key factors in Lyme. DIET being most important. Anyone who's not willing to go on the cleanest diet offered to Lyme patients then you may as well learn to live with all of the symptoms.
Sound Harsh? Sorry! I was one of those patients until I got sick and tired of being sick and tired.
Posted 12/30/2018 10:08 AM (GMT -7)
I've already cut out all kinds of pastries etc. from my diet, so no daily sugar intake. What more do you propose for diet specifically?

Also, what do you think led to that 7-10 days period of almost no symptoms? I had stopped taking antibiotics for close to 2-3 weeks before that and I was surprised that the symptoms had improved but then they came back after 2-3 weeks.
Posted 12/30/2018 11:39 AM (GMT -7)
First - 4 months is not a long time to treat with antibiotics.

It sounds like the break allowed your body to detox and that resulted in the symptoms abating.

Are you back on the treatment again?

Are you detoxing with multiple methods daily?
Posted 12/30/2018 7:35 PM (GMT -7)
I just had burning in upper arm. Felt Like it had been burnt by flames ... all day yesterday . Just a three inch section of my arm. Had to keep looking for burn marks. Gone today but symptomatic in other ways...
Posted 12/30/2018 11:16 PM (GMT -7)
Bartonella causes skin problems, including burning skin. I get it occasionally.
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