I noticed that I was bit by a tick in central Kansas on 4/27/2012. I scratched my stomach that day and noticed that there was a tick on me. I don't know how long it had been there. I freaked out and tried to quickly remove it. Unfortunately I broke the body off and the head of the tick stuck in me. I threw away the body of the tick and made it to the doctor the next day. I wish I knew the proper procedure then, I would have done things way differently.
I pretty much forgot about this incident until I remembered it about a month ago after desperately trying to find how to fix myself of all of the issues I have been having over the last year.
I called the doctors office today and got more info on my visit in 2012. They said that I didn't have a bulls eye rash but it was 1cm bite. They said that I was given 14 days of doxycycline. I hardly remember this, but I always did what the doctors say.
More info about me: 25 year old male, 6'2", 170lbs Had shingles 3/8/2011 Had mononucleosis 9/24/2012 Tested positive on IGG and IGM for EBV 10/25/2015 Tested negative for H. pylori 10/25/2015 Tested negative for HIV, Chlamydia Trachomatis, and Neisseria Gonorrhoea on 10/25/2015
Waiting on ELISA lyme antibody test, another EBV test, mercury and lead tests to come in. I know this lyme test is only about 50% accurate but I have Kaiser Permanente health insurance and this is what they did.
My symptoms:
General: -Fatigue -Mild hair thinning on the top/front of my head -Sore throat -Difficulty swallowing (throat feels tight and dry) -Excess mucus (possible post nasal drip) -Low body temperature (Last three doctors visits were: 97.2F, 97.6F, 97.3F)
Cardiac: -Chest pain -Strong heart beats, my body shakes when I'm laying down. (Especially when I'm on my back)
Gastrointestinal: -Abdominal cramping -Stomach hurts 24/7, gets worse after eating. Doesn't seem to make a difference what I eat. -Bloating
Musculoskeletal: -Foot pain, primarily heels (Diagnosed as plantar fascitis) -Joint/Muscle pain (knees hurt bad but they aren't swollen) -Lower/Upper back pain -Neck pain and stiffness -Jaw pain when opening mouth wide -Lots of cracking noises
Neurological: -Headache -Light-headedness -Difficulty concentrating -Can't explain myself clearly, like I can't find the correct word a lot of the time -Poor short term memory -Vision disturbances, floaters, auras -Eye strain, eyes feel dry (lots of blinking) -Two types of tinnitus, buzzing and ringing -Ear pressure
Stool: -Normal color, not too light or dark -Tiny white specks, think i'm not digesting food properly.
I know this is a lot of information to take in at one time. I appreciate any and all help that this community can give me. I really need to find a solution. Thank you!
Posts: 9 | From Yorba Linda, CA | Registered: Nov 2015
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Your symptoms certainly sound like Lyme to me. Look at Dr. B's Guidelines I have listed below in the link I included (he has a checklist for symptoms). It's imperative you become your own health care advocate and not just accept what the doctors tell you!
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.
posted
Thank you for all of the information and links.
After I get the results from my regular doctor my next step is to seek out a LLMD.
I agree that regular doctors have no clue when it comes to Lyme disease. I could tell by the way he talked about it to me today. It seemed like I knew more than he did.
I really like Under our Skin, I watched it a few days ago. Well done documentary.
Posts: 9 | From Yorba Linda, CA | Registered: Nov 2015
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posted
I don't have much time right now to respond (I'll be back later) but wanted to mention re swallowing - if your neck vertebrae or neck muscles have been affected, a subluxation in C4 or C5 can cause swallowing difficulties. You could check in with a good chiropractor about this.
Good chiropractors can also make us more comfortable spinalwise, and it is a temporary fix - we need to treat the condition.
Posts: 13117 | From San Francisco | Registered: May 2006
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quote:Originally posted by Robin123: I don't have much time right now to respond (I'll be back later) but wanted to mention re swallowing - if your neck vertebrae or neck muscles have been affected, a subluxation in C4 or C5 can cause swallowing difficulties. You could check in with a good chiropractor about this.
Good chiropractors can also make us more comfortable spinalwise, and it is a temporary fix - we need to treat the condition.
Interesting. Thanks for the info.
quote:Originally posted by Lymetoo: Does look like possible thyroid problems in addition to possible Lyme.
Be sure to up your dosage of magnesium .. that can provide many benefits.
I was thinking that too because of the low temperatures and a few other symptoms.
I was taking magnesium glycinate 480mg at bed time orally for awhile. I stopped about a week ago once I read that taking magnesium orally is not good for Lyme. I am going to look into transdermal magnesium.
Thank you!
Posts: 9 | From Yorba Linda, CA | Registered: Nov 2015
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Krazy...u r in the right place for help. It may take awhile to get in to good llmd but there is one in mo. The oral mag thing is controversial. .. many of us do well on it...i think lymetoo is sort of mag expert around here
I had low thyroid with low temp and meds by llmd and general docs brought my test numbers up to borderline but never changed my temp to normal
I saw a specialized chiro last year and he gave me a supp that changed my temp to normal quickly
Most chiros sell standard process supps. I take prolamine iodine and thyrotrophin by them. If i stop my temp goes down pain goes up and hair starts falling out
What you really need is a good llmd asap...to coordinate stuff. Its good you have one reasonably close. Many fly to him cuz he is right in middle of country
Good luck. Pm me if you need more info. You have a great name for the journey you are starting
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I would not worry about taking oral mag .. some even say not to take anti-oxidants at all .. but that is crazy. Our bodies have to function and most drugs deplete magnesium like crazy.
We have to fight to keep up even if we are healthy. It takes 58 mg of magnesium to replace what the body loses when we eat 18 grams of sugar.
Transdermal mag is great. I do both.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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quote:Originally posted by lpkayak: Krazy...u r in the right place for help. It may take awhile to get in to good llmd but there is one in mo. The oral mag thing is controversial. .. many of us do well on it...i think lymetoo is sort of mag expert around here
I had low thyroid with low temp and meds by llmd and general docs brought my test numbers up to borderline but never changed my temp to normal
I saw a specialized chiro last year and he gave me a supp that changed my temp to normal quickly
Most chiros sell standard process supps. I take prolamine iodine and thyrotrophin by them. If i stop my temp goes down pain goes up and hair starts falling out
What you really need is a good llmd asap...to coordinate stuff. Its good you have one reasonably close. Many fly to him cuz he is right in middle of country
Good luck. Pm me if you need more info. You have a great name for the journey you are starting
Thanks!
I just started supplementing with iodine again. I stopped most supplements for awhile to try to get a proper diagnosis if that makes any sense.
I take Iodoral which is a tablet form of Lugols solution. One tablet is 5mg iodine and 7.5mg iodide. It is the equivalent of 2 vertical drops of 5% Lugols solution.
I am working on tracking down the best LLMD in my area. I live in Southern California, Orange County specifically.
quote:Originally posted by Lymetoo: I would not worry about taking oral mag .. some even say not to take anti-oxidants at all .. but that is crazy. Our bodies have to function and most drugs deplete magnesium like crazy.
We have to fight to keep up even if we are healthy. It takes 58 mg of magnesium to replace what the body loses when we eat 18 grams of sugar.
Transdermal mag is great. I do both.
I take vitamin C like crazy. For the last month or so I've been taking around 12 grams a day. It seems to help.
I have done a lot of research on vitamin C as I think it's a great thing. I've even taken up to 36 grams and have still not reached bowel tolerance. That definitely shows that I am sick as most people reach bowel tolerance at 10-15 grams.
I'm still experimenting with vitamin C dosage and I am switching to sodium ascorbate from ascorbic acid.
I've read that Dr. K, who I respect, does not recommend oral magnesium as it feeds spirochetes. Now I'm sure being deficient is worse but I am going to do some more research on transdermal and probably go that route.
**edited name of LLMD**
[ 11-12-2015, 07:53 PM: Message edited by: Lymetoo ]
Posts: 9 | From Yorba Linda, CA | Registered: Nov 2015
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posted
ELISA tests are as good as a coin flip. Kaiser doesn't diagnose or treat Lyme, so you're correct, re finding an LLMD.
Keep in mind that not everyone tests positive who has Lyme. Top of Medical Questions has a stickie about important info on Lyme disease and co-infections. It includes a thread on 27 reasons for not testing positive even when we are.
That's why doctors will also treat clinically, by history and symptoms.
Posts: 13117 | From San Francisco | Registered: May 2006
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quote:Originally posted by Robin123: ELISA tests are as good as a coin flip. Kaiser doesn't diagnose or treat Lyme, so you're correct, re finding an LLMD.
Keep in mind that not everyone tests positive who has Lyme. Top of Medical Questions has a stickie about important info on Lyme disease and co-infections. It includes a thread on 27 reasons for not testing positive even when we are.
That's why doctors will also treat clinically, by history and symptoms.
Yeah I totally agree with you on the coin flip. I really wasn't expecting much from that test.
I'd really like to do a western blot from IgeneX. Seems like one the best ways to test from what I've read so far.
Sounds like Kaiser is the worst for Lyme. Glad you're reinforcing that for me.
I'm going to check out the thread you recommended.
Thanks!
Posts: 9 | From Yorba Linda, CA | Registered: Nov 2015
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posted
Hi - basically, I think you need to get to an LLMD - I'm pming you -
Ok - I just did, back again!
A Lyme-treating doctor will bloodtest you. It's very common, for example, for us to be low thyroid, and to take a thyroid supplement if so. I see low thyroid sx here.
Re GI - www.digestionsessions.com just ran a week online of 25 experts discussing GI issues that we watched. They have lots to say about the GI problems you're discussing. You might want to take a look at their site.
And, and, and - we have Lyme, so we will have our condition's variations for what they're discussing, like Lyme affects nerves which affect gut motility, etc.
Antibiotics are a good first approach to treating. I am also finding that I can treat hurting muscles and joints by taking turmeric. I get it in bulk at the health food store and dip 00-size capsules into it. I get relief within a half hour of time. I take a couple a day.
For all Lyme vision issues, I drink mangosteen juice, an anti-inflammatory juice. It stopped all eye symptoms for me within 24 hours of starting the juice! You can find it in health food stores and online. I like the Mango-Xan version, as it's the most tart.
Reading through here, I think you should google for symptoms of the co-infection bartonella - you list sore throat, sore feet, mood issues - do you also have swollen lymph nodes, nightmares? Those are also some of the symptoms.
We're all different when it comes to how we respond to anything, so all we can do is say such and such worked for me or it didn't.
You can read through some of the stickies at the top of Medical Questions, like the Burrascano guidelines for treating, etc.
[ 11-12-2015, 10:52 PM: Message edited by: Robin123 ]
Posts: 13117 | From San Francisco | Registered: May 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Take what Dr. K says with a grain of salt. Not everyone has thrived on his protocol.
Posts: 2839 | From California | Registered: Jul 2012
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Magnesium is an essential mineral that gets seriously depleted when you have Lyme. Amongst other things, It is vital for proper heart function. I believe that it is important to keep track of your red blood cell levels and supplement with a suitable form if needed.
Recently I have had to increase the amount of magnesium I take to overcome troublesome foot and leg cramps and it has made a terrific difference.
Posts: 1647 | From UK | Registered: Nov 2008
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quote:Originally posted by Robin123: Hi - basically, I think you need to get to an LLMD - I'm pming you -
Ok - I just did, back again!
A Lyme-treating doctor will bloodtest you. It's very common, for example, for us to be low thyroid, and to take a thyroid supplement if so. I see low thyroid sx here.
Re GI - www.digestionsessions.com just ran a week online of 25 experts discussing GI issues that we watched. They have lots to say about the GI problems you're discussing. You might want to take a look at their site.
And, and, and - we have Lyme, so we will have our condition's variations for what they're discussing, like Lyme affects nerves which affect gut motility, etc.
Antibiotics are a good first approach to treating. I am also finding that I can treat hurting muscles and joints by taking turmeric. I get it in bulk at the health food store and dip 00-size capsules into it. I get relief within a half hour of time. I take a couple a day.
For all Lyme vision issues, I drink mangosteen juice, an anti-inflammatory juice. It stopped all eye symptoms for me within 24 hours of starting the juice! You can find it in health food stores and online. I like the Mango-Xan version, as it's the most tart.
Reading through here, I think you should google for symptoms of the co-infection bartonella - you list sore throat, sore feet, mood issues - do you also have swollen lymph nodes, nightmares? Those are also some of the symptoms.
We're all different when it comes to how we respond to anything, so all we can do is say such and such worked for me or it didn't.
You can read through some of the stickies at the top of Medical Questions, like the Burrascano guidelines for treating, etc.
Thanks for the PM, you sent me some great info.
I think I have an under-active thyroid. I have started back on taking 12.5mg iodoral to see if this makes a difference. Seems to give me a little more energy so far.
I'm going to spend some more time looking into the co-infections. I don't have nightmares, at least that I can remember anyways. I would love to figure out my sore throat. This has been one of the symptoms I've had the longest along with my GI issues.
quote:Originally posted by Judie: Take what Dr. K says with a grain of salt. Not everyone has thrived on his protocol.
I definitely will, I'm going to do some more research on Lyme magnesium deficiency and what to do to fix it with no other issues.
quote:Originally posted by ukcarry: Magnesium is an essential mineral that gets seriously depleted when you have Lyme. Amongst other things, It is vital for proper heart function. I believe that it is important to keep track of your red blood cell levels and supplement with a suitable form if needed.
Recently I have had to increase the amount of magnesium I take to overcome troublesome foot and leg cramps and it has made a terrific difference.
Thanks for the info. I'm going to be doing more research on magnesium.
Posts: 9 | From Yorba Linda, CA | Registered: Nov 2015
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posted
I've been doing a lot of research on candida overgrowth and it appears that the symptoms are almost identical to Lyme disease.
I'm thinking I might have a candida overgrowth in addition to or in place of Lyme disease. Reason I say this, is because my symptoms started in my gut and then other symptoms followed.
Anyone with experience on candida? It seems that a lot of people with Lyme disease deal with this too.
Posts: 9 | From Yorba Linda, CA | Registered: Nov 2015
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