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
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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
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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
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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
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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
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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: 6956 | From Lancaster, PA | Registered: Feb 2004
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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
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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
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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
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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: 9020 | From Illinois | Registered: May 2006
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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
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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
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Keebler
Honored Contributor (25K+ posts)
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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
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Keebler
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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
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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
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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
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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: 9020 | From Illinois | Registered: May 2006
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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
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Keebler
Honored Contributor (25K+ posts)
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posted
- Check to see where the nearest power TRANSFORMER is in relation to your house / bedroom. If it happens to be right outside your bedroom, that could be a connection. usually, they are a big boxes with metal covers attached to power poles or to building with the power line running to it.
SMART power meters, too, could be a concern and there is little we can do against them but find out where your power METER is also located on the outside of your house. This is what READS the usage and sends it electronically to the company.
Heavy metals testing might be good to check first, too. Your regular doctor / insurance might cover this.
posted
I'm thinking its probably not anything in my house that's causing these problems (except maybe my cell phone).
I think this because i had the same symptoms back at my old house, and here at my new house at college.
I didn't have any gluten today and I think there are less periods of brain fog and more periods of clarity. Could be a placebo effect though since its only been one day.
I've also noticed a slight correlation between my worrying and my brain fog. It seems the more I worry, the more brain fog I have. It also seems to get worse after I've been looking at a screen for an extended period of time (longer than like 45 minutes)
Twitching is also down even more since I've increased my magnesium
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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posted
Just wanted to pause for a moment and thank all of you for trying to help me so much.
I'm just a stranger and you've all been more than willing to put up with my obsessive nature and annoying anxiety behaviors.
Thank you all so much. Hopefully I can find peace soon, because this whole situation is just wrecking me. I know I'll get through it though.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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I'm up to 10 drops 3x per day of the Houttuynia and I haven't noticed any change good or bad.
I know I can't count on this as a "test" but I figured I'd be worth mentioning.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
James, It's been about two weeks since you last posted. Have your symptoms improved or changed?
What supplements are you presently taking? How much magnesium? Have you been able to increase it, and have you been eating foods high in mag?
Vitamin D and boron will help your body absorb and retain magnesium. As the level of magnesium is replenished in the cells, a number of symptoms should improve, including anxiety.
quote:Originally posted by TNT: So, obviously, she is not willing to follow the Burrascano approach to diagnosing lyme disease. That is safer for her, but leaves many folks with lyme disease out in the cold. This is a concern!
It sounds like Dr. G is not diagnosing and treating true to ILADS standards.
I might be a little late to the game here, but as someone who may have experience with this doctor, I take issue with some of this. I see an integrative specialist in NJ, initials Dr. G. I travel almost 6 hours to see her, and she is by far the best Lyme doc I have had.
She does all the confection tests and tests extensively for Lyme, utilizing Stonybrook AND Igenx. She also does testing from Fry laboratories.
If Dr G found little evidence for Lyme, I would tend to support that diagnosis. She treated me for Lyme even though my test results were a bit ambiguous because I also showed pretty strong clinical evidence, in fact my diagnosis was clinical, and therefore unable to be covered by insurance.
If the original poster would like to message me on my experience, I am more than happy to chat. Yes, you could go find a doctor with a more liberal diagnosing strategy and get treated 'just in case.' But you do run the risk of causing more harm than good.
It is my personal opinion that we will start moving away from outdated treatment guidelines, and the burasscsno guidelines may fall into that category. In my opinion, anyone that advocates extensive multi year antibiotic therapy in mere suspicion that you may have Lyme, is not serving your best interest.
Research is moving into combination therapy and pulsed therapy. In my 10 year battle with Lyme, I honestly don't know many people who were cured by years of doxycycline or Zithromax.
I spoke with a woman who spent over 5 years seeing Dr H on countless regimes of antibiotics, and she only improved after seeing Dr G. If you believe you will only get better strictly following the burasscsno guidelines, by all means shop for a doctor that will give you what you want.
The best thing about Dr G is she gives you her honest educated opinion. And she is committed to getting you well, using a true integrative approach. If what you really want is a doctor to just tell you you have Lyme and start treating you to make you "feel" better, she is not for you.
That being said, as of now there is no way to definitely say you don't have Lyme disease. Dr G uses a lot of ways to determine your risk. She's given me western blots, CD-57 tests, the whole 9 yards. She diagnosed my babesia and Bartonella. Dr G is a wonderful doctor, but no doctor is infallible.
Because my diagnosis was clinical, they started me on antibiotics, and when I had my first herxheimer reaction, we knew we were one the right tract. I have nothing but good things to say about this doctor, if it is indeed the same one the poster is speaking of.
Posts: 133 | From North Shore | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- james,
A recent PBS program about the Pilgrims (by Ric Burns) mentioned that scurvy (from lack of vitamin C) could cause a tremendous sense of doom and mood issues.
We think of scurvy as something long gone but anyone, any time on this planet who does not get adequate vitamin C can develop scurvy and it has some serious psychological and physiological ramifications.
This might be something to really look into considering the symptoms you describe. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Yes, I have been taking my magnesium and have noticed a decrease in the frequency of muscle twitching and "doom and gloom" feeling, but they have not been eliminated.
Keebler,
That's interesting, I should look into this.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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quote: I'm not sure what other spirochetes I could have been exposed to, unless some of them come from common bacterial infections. This is why this worries me (coupled with my anxiety already).
The test could be picking up any number of dental spirochetes, so a positive band on the flagellum protein by itself does not indicate Lyme. Oral spirochetes are implicated in periodontal disease, and probably are fairly common as everyone gets dental plaques.
Reading over this post I am not sure I see much evidence for Lyme. Of course it's possible, but I would not recommend self prescribing oral antibiotics because you know someone who has Lyme and have anxiety. The main reason being, you likely are not going to have the correct antibiotic, combination, or length and dose to do much good.
Antibiotics like doxycycline might even drive Lyme into a cystic state, so indiscriminately using them to me, is not something I would recommend. I had bad acne and was put on doxy, I went off it after three months and I got sicker because of it.
True, maybe you could test out your response to treatment and see if you have a classic response, however, I don't think most people understand what a herx really is and just call anything that flares their symptoms or when they have a bad day a ' Herx.' To me it seems mostly self fulfilling, you WANT to think what you are experiencing is a herx to validate your belief that you have Lyme. i don't know if it's that simple.
If you got a work up from a well known LLMD and want a second opinion, then anyone could understand. But if you just want a doctor to validate your anxiety, you could do a lot of harm pursuing that. Because you WILL be able to find someone out there who can make a good buck off you convincing you without a doubt you have it. And they might even also believe you have it.
But I'm not seeing clear evidence yet. I went 10 years without treatment, and I'd say it took me about 3 years to bounce through doctors before I got an answer. You are lucky that right off the bat you got someone experienced.
But you might do better pursuing treatment for what is bothering you now (like anxiety)... And going over your testing before committing to the idea that you have Lyme.
A lot of Lyme patients have neurological issues, muscle and joint pain, arthritis. Have you done the burasscsno checklist for Lyme yet? ( it was it Dr H who made them?)
People think antibiotics are like candy, but they really disrupt your micro biome. I'm still dealing with guy issues a year after my treatment, so it's not something you want to do on a whim.
If you are dead set on some sort of antibiotic challenge, then in a month or two retest for Lyme and see if anything changes,
Also, it appears there are two DR G's in New Jersey, both ILADS trained. Small world.
Posts: 133 | From North Shore | Registered: Sep 2015
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I just had my first appointment with Dr A to address my concerns. He said he wouldn't be surprised if if was Lyme, but it could be all sorts of things causing my distress.
He's scheduling all sorts of tests for me within the next few weeks. He pointed out that on my CDC Lyme test band 66 and 41 came back reactive, as well as band 41 on my MDL Test. So he wants to retest for Lyme as well as several other disorders with my blood.
In the mean time, he put me on a 2 week course of 200 mg doxycycline 2x per day to see how I react. So far, it could just all be in my head but it seems my anxiety is a bit lower. Depression is consistent though and so are the other symptoms.
He already found something wrong with my nervous system just by looking at my eyes. I have high hopes for him, he seems very caring and thorough.
Posts: 117 | From Pennsylvania | Registered: Oct 2015
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