2) If results come back negative, self treat with antibiotics or herbs to see how I react. If it comes back positive, see another LLMD.
3) If results are negative and I have no reaction to treatments, I'll move on and consider other options other than Lyme
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
posted
Pretty good plan. You can also take antibiotics prior to the Igenex test. Sometimes it will help the test show more bands because your body has made some antibodies to the spirochetes.
You would take meds for one month, go off 10-14 days before the test, then take the test.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Anyone have any suggestions on how to get antibiotics without a prescription? Or how would I get a prescription?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
quote:Originally posted by Lymetoo: Do you happen to have acne? Doctors will hand out doxy for acne. Just sayin'
Hmm, good idea! I don't really have too much at the moment but I could maybe ask them to give me something for when I break out?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
posted
So I went to my campus doc and complained of acne. She gave me a weeks worth of doxy.
Would a week be long enough to notice a herx or improvement? She told me to take 100mg doxy 2x per day for 7 days.
Also, I was wondering, how does Lyme/Co infections cause muscle twitching? Is it because it eats up magnesium, or is it because it affects the nervous system?
I say this because I started to take magnesium on Tuesday and my twitches seem to be going down.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote: Originally posted by thatjames1130:
Also, I was wondering, how does Lyme/Co infections cause muscle twitching? Is it because it eats up magnesium, or is it because it affects the nervous system?
I say this because I started to take magnesium on Tuesday and my twitches seem to be going down.
James, congrats on starting magnesium! This is one of the most basic things you can do for yourself when you have Lyme.
The Lyme bacteria live in our cells and use the mag. The muscle and nerve cells need magnesium for all enzyme processes, and when it's depleted everything is affected. Energy production slows down, muscles can twitch and spasm.
When cells don't have the magnesium they need, the body pulls calcium from the bones. This means there is more calcium circulating in the bloodstream, which leads to other problems.
The arteries calcify and harden (hardening of the arteries), the valves in the heart calcify (heart disease), and calcium can precipitate in the kidneys (kidney stones).
I am interested in how this will affect your anxiety and depression. How much are you taking now? You can slowly increase the dose to twice daily, then three times daily.
Don't take with the antibiotic, and not with dairy. The calcium in dairy will bind with the mag, so you won't absorb as much of it.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
I've started taking 2 200mg capsules once per day. So does Bartonella cause twitching in the same way? It feeds off all of the magnesium?
Or does the Bartonella cause twitching because it's in the brain and affects the nervous system
Something else maybe worth mentioning. Coffee seems to get rid of all my symptoms. My anxiety is down a lot, I'm not really depressed, and my memory/concentration improves dramatically.
I don't drink coffee all the time, maybe once or twice per week, so maybe that's the reason for such a dramatic shift idk. Might not mean anything but I figured I'd mention it.
quote:Originally posted by Lymetoo: How did you go from having 100mg capsules to 200mg capsules??
Sorry, I should have specified. The 200mg capsules are the magnesium, not the doxy. The doxy is 100mg twice per day.
Kinda stinks that whether or not the magnesium works still doesn't tell me anything about Lyme, since even people without Lyme can be deficient in magnesium.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
posted
Little update. Muscle twitching is way down. Anxiety is also down but depression is constant. I think maybe I have magnesium to thank for this.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
posted
I gotta admit, a part of me is starting to think a lot of these symptoms are just in my head and that terrifies me.
Why do I think this? Well, here are a few examples:
I feel like my memory isn't as good and I'm having difficulty concentrating, but my grades are fine... even better than last year actually.
I also can recall insignificant information better than a lot of my friends (insignificant things like names of actors, random facts, etc)
I've also noticed that I don't really experience many of my symptoms until I start thinking about it.
For example, my leg feels weird sometimes (kind of like a restless feeling), but only when I THINK about my leg. The thought comes before the symptom, and I think it should be the other way around.
I don't really feel too anxious until I start reading into Lyme and other diseases I could possibly have
I even seem to be able to convince myself my vision isn't too good (after reading vision loss is a symptom of Lyme) even though I could read at long distances just fine.
The only symptoms that persist despite my thoughts are my depression and muscle twitches. And maybe slight brain fog, but I don't know if I'm imagining that too.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
posted
Yeah, I was thinking about that. I just don't want to ignore the fact that it could be Lyme, or Bartonella. I just feel all over the place
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You don't have the classic exhaustion that most with lyme get. And, as I recall, you don't speak to the physical pain that lyme and - especially - bartonella can bring.
However, Bartonella can most certainly bring on the kinds of overactive thought anguish so, yes, I would pursue testing for that first (over lyme) but really a LL ND can best help you figure out if this might be in the mix for you. Not all tests are that accurate.
There can be so many reasons for the symptoms you have and I would seek out a naturopathic doctor, actually. You could find one who just happens to be ILADS educated and lyme literate, just so you'd have someone who has that additional training.
You said you were gluten free for a few weeks and did not see a difference. It could take many months to see a difference in your symptoms of brain fog issues, up to six months, I'd say would be a fair trial. But it should be fully gluten free and that takes some study and effort.
A ND can help direct you to possible nutrient issues, "stagnation" issues of blood flow, etc. There are just so many reasons why I think your efforts would be best placed with a ND right now.
They have so many skills and so much training in herbs, some in homeopathy, acupuncture and also know others who are tops in adjunct areas of counseling, massage if they think you could benefit . . . as well as they would know the better MDs out there, too.
As for counseling, certainly the language we use with ourselves can set us up in some slippery ways. We can retrain ourselves and re-set habits where they may get in our way. Still, I would better trust a LL ND, after they assess you, to guide you to the right kind of counselor.
Let me be very clear here, though, do not put yourself down and think that all this is "all in your head" or not really so bad as your world still stands.
If you are experiencing this stuff, you are experiencing this stuff. Pure and simple. And, yes, it matters. But it may not matter in the way you think. Don't jump to assumptions.
Don't pick out what you want to prove this is or is not. Take your symptoms to someone best qualified (and I think that's a LL ND as this point) . . . share with they your very real experiences. Let them take it from there for a while with you.
And, in the meantime, I'd go back to the gluten-free approach and Google "HIDDEN SOURCES OF GLUTEN" and read all the lists as some can vary.
And be sure to find a good MAGNESIUM, D3 and eat good organic foods from the earth. Great time to learn some new recipes. Maybe a cooking class? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Do you have a vinyl shower curtain? is your environment free of off-gassing chemicals . . . including scent free?
Avoiding processed foods? No need to answer, just making the point that these can drive a person bonkers. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.)
You might benefit from FELDENKRAIS body awareness movement . . . singing lessons . . . learning a musical instrument, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh h h h, you are not sleeping with your computer, tablet or cell phone, I hope. If so, that could explain a lot. Brain experts / sleep experts are advising that we all banish all electronics from the bedroom, don't look at them for an hour prior . . .
turn off power at power strip. If you have a cell phone, charge it far away from your bedroom.
Even during the day, try to limit cell phone use and keep it far from you when not using - when you can, say when you are at home.
this matters. good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Thank you so much Keebler, I never thought of a natural Lyme Doctor. I'll surely search one out
And as a matter of a fact, I do sleep with my cellphone next to my bed, charging. I use it as an alarm. It's also in my pocket most of the day, and I'm texting on it constantly
It's always in my right pocket, and that's the leg that feels weird sometimes. Kinda interesting
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Kinda damaging, actually. It left "interesting" a long time ago. Please, put it in its place.
Why text? Use a real land line phone and talk to your friends, invite them over, see them outside.
Is what you are texting going to enhance the quality of your relationships deeply with others or just filling up some lonely minutes? Save up your energy for quality time, in person.
Get a real alarm clock, or dust off your old one. I'll bet your affair with that electronic gadget has a lot to do with your symptoms. Don't let it control you, you can put it in its place, far away from you other than for a few SCHEDULED times a day when you use it with a purpose, and then get away from it.
A suggestion for weaning away from texting: might you enjoy learning a musical instrument? Might those friends with whom you text? You might all create some kind of music circle, engage in joint lessons . . . use the time to practice on your own and then get together in person and blend.
Or learn art, or some other fun activity. A new language . . . . something not just to take your mind away from the habit of texting but to also help your brain in many ways. Music can do that. So many benefits. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I believe it's the Wifi .. we should not have Wifi boxes in our bedrooms either.
But the heat of the cellphone is also a problem if I'm not mistaken.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's all of it: the WiFi box in home; the antenna / tower; the phone itself and the charger.
Scroll down to see full VIDEO, a one hour & four minute presentation. This is so very important, to see the whole thing. I saw this the weekend it aired on Book TV and will never forget it.
Devra Davis presented her book "Disconnect: The Truth About Cell Phone Radiation, What the Industry Has Done to Hide It, and How to Protect Your Family"
She argued that cell phone radiation damages the human body. She said that recently disclosed research shows that cell phones negatively affect human DNA and increase the user’s risk of developing memory loss, cancer, and various neurological diseases.
Ms. Dutton talked about the industry practices that have hidden the dangers and her recommendations for cell phone use. Ms. Davis showed slides throughout her presentation and responded questions at the end. Dr. Herberman added remarks about the need to take precautions. Maine State Representative Boland talked about industry resistance to safety warnings.
This book launch event was held at at Georgetown University in Washington, D.C., where Ms. Davis was a visiting lecturer.
ZAPPED: WHY YOUR CELL PHONE SHOULDN'T BE YOUR ALARM CLOCK
by Ann Louise Gittleman - Oct. 2011 -- over 87 reader reviews and you can look inside this book at link
From one review:
. . . In Zapped, Dr. Gittleman makes a compelling argument for the health impact of this constant exposure, and outlines the research and studies behind the latest health concerns related to electronic pollution.
In particular, Dr. Gittleman talks about -- and includes in her references list -
- many of the studies that have found that exposure to electromagnetic fields may be associated with Alzheimer's disease, ALS, heart disease, miscarriage, birth defects, infertility, mood disturbances such as depression, and quality of sleep. . . .
. . . The most practical part of the book is the room-by-room guidelines to help you minimize exposure . . . . -
[ 10-30-2015, 04:57 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
So I bought a cheap heavy metals urine test online and the results were that I either have Mercury, cadmium, or lead present in my body (the color was tough to make out)
I'm wondering if this could have caused many of my symptoms
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
posted
I treated my lyme disease for about 1.5 years with Rife. During the active disease process I had my blood looked at twice with dark field live blood analysis.
Not seeing lyme in the blood is not conclusive of not having Lyme but it can be a pretty good indicator, especially is so many other markers in your blood improve.
My third blood analysis showed almost perfect blood and I felt very well at the time and continue to do so. I consider my self cured.
there is no way to know for sure, I agree.
I will add that muscle twitching and neuro twitching for me was definitely Lyme disease. When I applied the correct rife frequency for this aspect of Lyme, it was shortly after that that I really started to feel totally well. I've felt totally well and lyme free for a year now.
Posts: 803 | From USA | Registered: Oct 2013
| IP: Logged |
posted
I really only have two main symptoms that are persistent, the muscle twitching and brain fog (difficulty concentrating and comprehending).Although my working memory seems fine.
I also get very slight tingling sometimes but it's so slight that I'm thinking it may be in my head. It also seems to only happen when my hand/foot is in an awkward position.
The twitching also only seems to happen after I've been sitting or laying for a while, or after I start to think about it (the power of the mind, huh?)
I understand these symptoms can be cause by hundreds of different things, but for some reason I just can't take my mind off Lyme and its driving me nuts.
I just worry because I know I can't afford to see another Lyme doc or take the IgeneX test, at least not for another month or so.
Funny thing is that I thought I was starting to get better, until I started thinking about Lyme again.
Really wish I could just get some peace of mind somehow.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you still sleeping with your cell phone? Still have it in your pocket a lot? A trial of a couple weeks distancing yourself may bring some nice surprises.
I cannot stress enough the absolute importance of this. It should be top of your list.
There have been so many other things to consider in replies to you. You might go through them all, make a list and work your way down that list.
For instance, I think you said you tried a gluten free diet for a couple weeks. It can take a few months. And gluten is hidden in so many things and also restaurants or a deli just can't guarantee any food to be gluten free if flour is flying in the kitchen or they don't have a dedicated, certified gluten free prep area.
Gluten and cell phone distancing are what I'd focus on for now, along with just excellent nutritious food and assertive rest, exercise that works for you yet is still not too aggressive.
If you take any pain, mood or sleep drugs, any of those can also cause all kinds of brain fog. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
How far away should my phone be from me during the day? Is my backpack enough? And at night would across the room be enough?
I will try another gluten free diet within the next couple weeks as well (don't want my current food to go to waste lol).
A gluten free diet should be easier for me than last time, because last time I was also avoiding soy, eggs, and dairy.
I already know I'm lactose intolerant and Dr G actually said that people with one food allergy tend to have another food allergy, so this could very well be the cause, or at least a contributing factor.
I tried the "easy elimination diet" which only required 3 weeks of abstinence from the foods I mentioned, but apparently it could take longer to notice a difference.
Now that I think about it actually, I don't remember brain fog being much of a problem when I was on that diet, although anxiety and depression were persistent.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
lymeboy
Unregistered
posted
I didn't read all the posts here, but my own 2 cents is that ANYONE can be convinced that they don't have Lyme.
The politics of Lyme are pretty god-awful and too many sick people are being told that they absolutely are not sick...
I would get with a reputable LLMD. Try antibiotics. If you herx, you likely have it. I cannot say whether you do or not, but many DOCTORS will tell you you're fine.
No matter what it is, don't give up and best of luck to you.
IP: Logged |
posted
I just received houttuynia drops for possible Bartonella to see if I herx or improve.
Any suggestions on how to take it and how many drops per day?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Start with one drop in a cup of water. Once a day for a couple days, work up to two drops, etc. Read up on it from various sources.
As for the cell phone, you ask:
"How far away should my phone be from me during the day? Is my backpack enough? And at night would across the room be enough?" (end quote)
No. It needs to be as far away from you as possible in your residence. If you lived in one room, then you'd have no choice. But if you live in more rooms, place cell phone, chargers, etc. as far away from all in the home when not in use.
When you are out in a public place, of course, you have to keep it with you but try to have it not be on your person or any closer to you than necessary. When you take a walk as a work break, leave your cell phone behind so that the walk can do you the most good. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Thanks Keebler, you're really very informative.
I think once I get some money I'll invest in an alarm clock and will let my phone charge in the kitchen or living room or something.
Is it only my cell phone I need to be wary of? I also have a computer and xbox in my room, as well as a mini fridge (college house haha)
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ALL electronics need to be unplugged if they stay in your bedroom. Unplug from the wall or power source. This includes computers, TVs, xbox, etc. Just being off is not enough.
But the cell phone, even when off, needs to be further away (and especially the charger far from you).
As for the fridge, it's not the same but it would be best to have that out of your room, too, for the noise of it can hamper sleep. Since you are in a house, I assume you all have some common areas and you might arrange somewhere else to put this and a nook for your cell phone to nest, too.
If possible, shared bedroom walls considered so that there is not a cell phone charging or computer on the other side of your bed wall.
This is top priority. Just as you would be careful about choosing any sleeping partner, so too, a cell phone in the bedroom is a sleeping partner that has many risks, even if hidden. "Safe sleeping" means distance, all the distance you can get.
Beyond that, "sleep hygiene" all around is key. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Very informative. I'll start the houttuynia tomorrow. Are there any side effects to this herb? Or is it considered a herx if I experience any side effects?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I would not count on this as any kind of "test" - it was a very nice herb for me, very supportive. I had no side effects at all.
But you are taking a different brand and it may be a tincture (?) so the alcohol can have an effect that would not otherwise be connected to the herb.
Just be sure start low and slow and with a good amount of water - a half cup or so. Do not take it straight into your mouth as the sudden "hit" can be too strong.
Study it from a variety of sources.
Also, it's not been mentioned but anyone with lyme is well advised to avoid all alcoholic beverages. The little amount in herbs - when taken in water - is fine.
But alcohol in "entertainment" amounts should be mentioned.
Since you don't have some of the classic lyme symptoms this may not occur to you as important. Also know that beer contains gluten from the barley.
As you live in a "college house" and alcohol can flow from the faucets in some, just want to be sure you don't drink alcohol.
If you do, it's best to not drink alcohol at all when concerned that you have any health condition and especially not while taking any Rx or nutritional supplement. - due to alcohol's effects on the liver and the nervous system.
Nutramedix Houttuynia info. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Houttuynia is not in here, yet this is a very important book to understand how herbs work. Body organs / systems / food also detailed here. Just search to find some great detail.
I hope you can get a copy of the actual book but, for now, the site is a gem, just a gem. Check out the menu for a start.
Though not at all about lyme, this is one of the best reference resources on my bookshelf that has wonderful chapters, many graciously available through their website.
The ONE EARTH HERBAL SOURCEBOOK (Tillotson, et al)
He is a doctor of Ayurvedic Medicine; She a doctor of Oriental Medicine and Acupuncturist. The third co-author is a doctor of optometry. Based in Wilmington, DE -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I've decided, for my own sanity, that I think I'm going to stay away from this website and other internet sources about Lyme and other potential diseases.
Every time I venture into it, I get more and more anxious and I'm starting to think I may have hypochondriac tendencies.
My plan is the following:
1) Try to find an affordable Lyme Doctor to sign off on my IgeneX testing and to be evaluated as a second opinion. If IgeneX is negative and the second Lyme Doc doesn't think I have it, I think it'd be time to move on.
2). Continue to eat healthy and exercise as I've been doing, and try to take my mind off this
3). See what progress can be made with my psychologist and try meds if absolutely necessary.
If 6 months or so passes and symptoms don't get any worse I'm thinking that means I probably don't have Lyme (correct me if I'm wrong)
Thank you all as you've been TONS of help and very informative. I just feel like I need to stop obsessively checking into Lyme as it drives my anxiety through the roof. Thanks again.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
james, when a person is in a depression, they are very suggestible regarding negative things. So, don't worry about having hypochondriac tendencies based on what is happening now.
When I had depression, if I read the insert with the gas and electric bill and it told you to be sure your dryer venting was free of lint or it could set your house on fire, then I worried that that would happen and made my husband check it.
If I read anything bad that had happened, it made me worry that it could happen to me. I worried that my husband set his arm on the window lock while driving and that if we got in a wreck, I would not be able to get the window down. I had to check it myself when he stopped for gas.
And on and on it went. So, just know that depression makes a person very suggestible toward anything bad.
Do you know the difference between a psychiatrist and a psychologist? A psychiatrist is a medical doctor. He would have diagnosed you at the first appointment and put you on appropriate meds. You would report how the meds were working and likely would be feeling better within 30 days or less. And, the doc would advise you on how to taper off and when to try tapering off.
You generally have only a few appointments and you are finished.
Psychologists are not medical doctors. In many/most states, psychologists cannot prescribe medicine. They engage in talk therapy and have a self-interest in continuing to have you back as long as possible to talk. So, if you have depression/anxiety, you really should go to a good psychiatrist and get some appropriate meds. Then, if you want to see a psychologist, you could. If depression runs in your family, the psychiatrist could talk to you about what to expect in the way of a recurrence of this condition.
So, don't suffer needlessly. Get to a good psychiatrist and get some help for your anxiety. That is no way to live. Ask the psychiatrist all the questions you have about how you are currently thinking. He can tell you if that is how depression (a medical condition of low brain chemicals) affects the mind. I think it will give you peace of mind. Peace of mind is priceless. Without it, life is a horror.
You would take appropriate medicine if any other organ of your body were malfunctioning. Why resist medication if it is the brain that is malfunctioning?
While you have depression/anxiety, it is good to evaluate the things you read, watch, and listen to. I did that when I had anxiety/depression. Eliminate anything that makes you feel worse.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
I 100% agree that peace of mind is priceless. My worry is that I will never find peace of mind, not with the uncertainty of this disease.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Peace of mind is not attainable in ways we think. Right now, peace of mind may be that you take the very best care of yourself - today - as you can.
Peace of mind may be knowing that none of us has all the detail we wish we had to have all the answers. It's a process. And by going through a process we learn and grow. We also need to keep in mind that the uncertainly in life will always be there in one form or other.
The certainty, however, is in our hands - to know that we will guard our life, our inner spirit - as best we can. This is what matters - not all the "what ifs" floating around. Push them away.
So, when we can find whatever peace and calm - right now - around us, within us, go for it. That might be a walk in nature, some music, delicious healthful food, good personal care habits that are also enjoyable.
Find the calm that you can for today. Find it in friends & family, too, in sharing.
Is it possible to look at exploration as a learning process? When you read about whatever infection or condition, take a "well, isn't that an interesting process?" sort of attitude and not take it personally.
If there are some things that ring true, just make a note. Don't jump to any conclusion.
What I hope LymeNet provides, in addition to exploring aspects of disease, what's CAUSING symptoms is finding out
what can be DONE about symptoms, and often that is regardless of a cause. There are many good ideas here just how to best take care of ourselves.
Bottom line in life long learning: opening the window; turning on the light so that whatever truths can be known, faced, managed and overcome when at all possible.
There are times to focus on various methods of gathering information, of course, and for you - now - maybe it's going to that place where you take the best care of yourself as possible see if some changes in how you do that help.
You might also set aside an hour on certain days to study this, academically. Keep it in perspective.
Yet, nothing can take the place of an excellent doctor. With some of the questions you've asked, I would suggest an ILADS educated LL ND so that you have
someone who can look at broad base, offer you suggestions for how to ease symptoms now and also they have the background to assess for various infections, so you can let them do that part of the exploration. -
[ 11-09-2015, 08:02 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As you seem to be a college student, or at least living in a "college house" you must be near a campus and even if as a town resident, there are ways to take certain workshops on campus.
Seek out something of interest to you: singing; musical instrument; theatre; chess; art . . . .
Find out if there are any gentle yoga classes, cooking classes, etc. Focusing on something else is vital no matter what all is going on. Turn on the light for something new in your world.
Peace of mind is sometimes a byproduct we find by engaging our awareness in sensory arts. This does not mean you don't keep the light on for seeing all aspects of what's going on but - often - we must set all that other stuff aside and focus on something that's just engaging to our senses. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
I just feel like if I at least knew my anxiety/depression wasn't caused by Lyme, I could just ignore it and say its just "one of those things".
When I start to randomly feel anxious, I immediately jump to the conclusion that I have Lyme and that's what's causing it. It drives me so insane
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You have good energy. That is why I would not put lyme high on the suspect list. Bartonella should be considered but there is only so much you can do about that at this moment. Find the kind of doctor who knows what you need them to know for a proper evaluation.
When you find yourself worrying, train yourself to recognize it, and make a plan to see who you need to see & be proactive in some way that can matter whether or not your concern is found true.
In the meantime - tonight, tomorrow, by the end of this week read as many of the articles that you can in the set below.
How about this? Start with the knowledge (not an assumption) that
magnesium deficiency is likely involved
& that sleeping with your cell phone can also add to this.
Being proactive, there is much you can do. Whether lyme or not, those two variables are top of the awareness list. Start here:
& seek out some kind of sensory art / enjoyment / nature connection every day, multiple times a day -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
I have been taking the magnesium regularly and think I may have noticed a decrease in the frequency of muscle twitches and anxiety.
Just every once in a while, I just get so anxious and upset for no apparent reason. That's when my mind jumps to Lyme (or Bartonella)
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be sure the magnesium is 3 - 4 x day, not all at once and between 1,000 - 2,000 mg total a day . . . (just in case you take this, avoid ibuprofen when taking magnesium for kidney safety).
Have you located a LLMD or LL ND nearby? Is it possible for you to see them ? A LL ND would be so nice if you could see one.
If not, can you talk to your local lyme support group leader, find out who they would suggest as being at least lyme friendly who might assess you for bartonella ? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I have located another ILADS educated doctor near me but will have to wait till I get back home to see him. I have had no luck finding an LLND though.
How can I find a local Lyme support group? I apologize if you've went over this already.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Google: Pennsylvania "lyme support group"
and be sure any group you link up with is ILADS minded
posted
What drives me even more nuts is that logically, I KNOW there are several different potential causes for my symptoms, but for some reason I just can't think it's anything other than Lyme/Bartonella.
I always see my dad struggle just to get through his day, and I feel awful for him. I also worry that this is my fate.
I just can't wrap my mind around the fact that stress could be causing these horrible symptoms. It just seems to ridiculous, though I know it's very possible.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
James, how often are you taking the magnesium? Try taking a dose every eight hours.
Also, eat foods high in magnesium. Almonds, almond butter Cashews, peanuts Pumpkin seeds, sunflower seeds Beans, kidney beans, rice and beans, bean soup, bean burritoes. Dark chocolate
In addition, your body needs to have a high enough level of Vitamin D in order to absorb the magnesium. Make a point of getting some sun on your skin every day.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
I've been taking two capsules twice daily. This ends up being around 400mg.
Think I maybe need more?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It really needs to be 3 - 4 x a day. Every 8 hours, as Carol suggests, is good. 400 mg total is a rather low dose. The articles explain more.
Up to 1,000 mg - 2,000 mg total daily but be sure you are not taking ibuprofen so as not to stress kidneys.
The next time you are at your doctor's ask for an intracellular magnesium test. Detail about that also in the links set. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I scheduled an appointment with Dr. A in PA.
Hes relatively new but he was emailed to me from ILADS so I'm hoping hes trustworthy.
He uses two private labs, Everest, and MDL and he takes insurance. He will also sign off on a IgeneX test if I want, but that would be out of my pocket.
Anyone ever hear of Everest labs? Should I still use IgeneX despite the expense?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- With every hope that this doctor will work out for you . . . it's not enough to get a name from ILADS. Any doctor can put their name on the list. Talk to the lyme support groups all around you about this doctor to become clearer.
While you wait, I would still do a "cell phone detox" [distance and time apart] and see if that helps. It's such a major consideration. -
[ 11-11-2015, 02:25 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
They are very knowledgeable and would probably be the best to ask for help in locating one. I did send you a PM before with names of LLMDs for PA.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Light bulbs? Are you using any kind of fluorescents, CFL (compact energy savers)? If so, they can cause anxiety in some people. LEDs are better but the incandescent bulbs may be best for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Hopingandpraying, thank you for your PM. It won't let me pm you back though because I think your mailbox is full.
Dr M that you mentioned, has he been around a while?
I'm in a bit of a dilemma right now. I can either see Dr A in early December, or I can see Dr M late January.
The issue is that I go back to school at the end of January, and I don't have a car, so I'd have to take advantage of my time at home when my parents can drive me
posted
I just got off the phone with a very nice and knowledgeable naturopathic doctor who spent a half hour on the phone with me going over all of my concerns.
She basically told me that she uses MDL labs because they're "nearly just as comprehensive" as IgeneX but with half the cost.
I asked her how I could put my mind at ease regarding Lyme disease and she said that while Lyme is more typically ruled in than ruled out, something I could do would be to take my blood work again (its been 6 months since my last one), and if I had Lyme, she would expect to see something show up on the results.
I described my symptoms over the phone and she said that as far as Lyme goes, she would expect to see some kind of pain or fatigue, but she also said that the disease and coinfections manifest in different ways in different people.
Do you guys think it'll be worth the $400 to send my blood to IgeneX, or is MDL just as good when using them twice?
My ultimate goal is peace of mind and knowing for sure (or as sure as I can get) whether I do or do not have Lyme, so I can either treat it or move on and find out what else could be happening to me.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- She says she "would expect to see something show up on the results" [of the MDL lyme test].
Does not sound like an ILADS educated doctor.
Also, you might check but I do not think MDL does all the bands that Igenex does. Still, there are so many strains of lyme. Even Igenex just tests for one.
A lyme test will not likely provide the answer you seek.
You might test first for BARTONELLA, STREP, or other coinfections. I'd normally say to first meet with that ND but she does not sound very well educated in tick borne disease / chronic stealth infections (if she thinks a lyme test will show definitive proof) so I'm not sure she'd be the right choice.
However, as she also says "would expect to see some kind of pain or fatigue" [were it to be lyme] - and that is absolutely correct most of the time. So I would sure look to the more likely possibilities first. Bartonella and Strep both can cause the symptoms you describe.
The most experienced doctor you can find to do a clinical evaluation would be better than any test.
And do a "cell phone detox" to rule out that as a cause of your symptoms. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
So really the only way to know for sure is to be treated for it and see how I react?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First: consider all possibilities and rank them in order. Lyme is not at the top of the list regarding your symptoms. So, start with the things that are more likely. There are several that come to mind before lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
What are some other things that come to mind in your opinion?
I know the cell phone and other electronics are some things, but do you know of any others?
Posts: 117 | From Pennsylvania | Registered: Oct 2015
| IP: Logged |
posted
Sorry about that - my mailbox frequently fills up because I send out information and also receive various PMs.
As far as I know, Dr. M has been treating for many years. You mentioned Dr. A was new so I would not call him a LLMD because he doesn't have the experience and has not successfully treated a number of patients.
I would recommend you call Dr. M's office and keep calling, every day if you have to, to ask if there are any cancellations or a waiting list. Explain your situation and I'm sure they will be understanding, even though it usually takes a longer time to get in to see a LLMD. Keep trying - other patients have been able to get in sooner by doing this.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One thing you can do while the rest is sorted out:
Do you have a pet? Had you been around pets / animals before your symptoms began? If so, and if possible, have them tested for bartonella. That's an important step in the process.
First order of importance are pets who have kissed your face, shared a pillow, scratched or nipped / bitten you.
Think back in time to just prior to when your symptoms began. Might you have had a sore throat or been diagnosed with strep?
While I know it's hard to hear someone dwell on the effects of having a cell phone near you and being on it often, there are some studies that do indicate this can be a cause of anxiety and the kinds of symptoms you experience. I can't go looking for those but I've read several in recent months.
While you sort out all the rest, finding a good diagnostician who can see you, listen to you and assess you in person, you may be pleasantly surprised and pleased at what a cell phone "distancing" plan might offer you.
And checking your light bulbs as well, avoid fluorescents. I hope some of the detective steps bring some relief for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic