Since my clinical diagnosis of Lyme a few weeks ago I've been researching the illness and trying to sort through the good information and the not-so-good. I've also watched some excellent documentaries on the subject including Under Our skin. It's all quite overwhelming to take in, but I'm very glad to have found this discussion group. I'm also fortunate to be in touch with a very kind and helpful Lyme patient who is a wealth of knowledge.
My background: I'm in my 50's and live near Dallas. In August 2013 I was bitten by a tick, found 3 on me and did not develop the classic rash but did develop fever, nausea and flu-like symptoms 3 days later.
I also may have been bitten 5 months prior because although I don't recall a bite, I did make a note in my journal that I fell sick with fever and flu a few days after walking through a nature park and also developed leg pains which went away soon after.
Forward to April 2014...developed breathing difficulties that my doctor could not explain. They subsided after a few months. Other aches and pains would come and go always leaving me puzzled.
My more obvious and scary symptoms began 5 weeks ago with facial spasms and feelings of imbalance when I walk. Those continue today.
A few weeks later I woke up with a painfully stiff neck and when it wouldn't go away after several days I finally started doing some research and put two and two together.
I found a recommended Lyme doctor about 4 hours drive from me and made an appt to see her at the end of this month. The only other doctor in my area is said to be excellent but has a 10 week wait to get in.
I began taking some abx 6 days ago just to get started and to bridge the time until my doc appt. On the 4th day of the abx my neck pain became so bad at night that I could barely turn my head or lift it to get myself out of bed. I guess this is the Herxheimer effect working a bit early?
I am very aware and relieved that my symptoms are mild compared to what most of you have experienced with Lyme and I'm very grateful that I am still able to function most of the time.
I guess what I'd like to know is, since I'm starting treatment before my symptoms have become completely debilitating do I perhaps stand a good chance of a successful treatment? Or does this have nothing to do with the prognosis since I have been infected for over a year now.
I have the feeling that what I am experiencing with my neck pain is only the beginning of the horrible manifestations to come, but I also hold out some hope that I will be starting treatment in time to avoid the worst.
Thank you for listening. I would love to have your feedback and I will try to keep my future posts much briefer. :)
p.s. the only test I've had so far is the Elisa (twice) which my doctor told me was negative. It was, however, equivocal both times at 0.91.
Posts: 35 | From North Texas | Registered: Sep 2014
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posted
You have several things in your favor - number one you know you were bitten by ticks. Number two you are starting treatment relatively early in the illness.
There are no guarantees, but I am optimistic that you can put this into remission. We do not generally use the word cure on this forum.
In my opinion there are three things that are crucial to recovery. First is finding a good doc who will treat based on a clinical basis if needed.
Second is treating for at least the big 3 infections regardless of test results - lyme, babesia and bartonella. It is almost never just lyme.
Third would be the patient themselves. It is up to you to research and follow your docs instructions. Supplements are almost equally important to meds - good bacteria and magnesium and the b vitamins and whatever fits with your particular set of symptoms and illnesses.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Facial spasms Painful stiff neck
These are symptoms of low magnesium.
The Lyme bacteria live in our body's cells and use up the magnesium for themselves. Magnesium is needed for all enzyme processes, so things go haywire when it's depleted.
Also, the liver uses magnesium to detoxify the poisons left behind by dead Lyme bacteria. So taking supplemental magnesium should help the Jarische-Herxheimer reaction.
This is something you can do for yourself. Blood tests for magnesium levels are not reliable, as they don't measure the amount of mag in the muscle and nerve cells.
You can eat foods high in magnesium. Almonds, almond butter Dark chocolate Beans, black beans, baked beans, bean soup, bean burritoes
Early on, I noticed that I felt better when I ate beans. When I found out about almonds being high in magnesium, I bought a pound of them at the grocery store and ate a couple ounces daily. After two months of this, I lost my craving for chocolate!
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
To Bea, Thank you for your input. It's good to hear your optimism. I'm looking forward to meeting the doctor and getting more helpful tests done to determine the course of action. I'm sure this will give me a better picture of what I can expect.
Many thanks! LauraJean
Posts: 35 | From North Texas | Registered: Sep 2014
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Thank you for the information! About a week into my facial spasms I read that it could be caused by a magnesium deficiency so I started taking a liquid Cal/mag supplement (300mg Mag, 600mg cal)in the evening, as well as snacking on almonds and pumpkin seeds.
I'm glad to know that the blood testing for mineral deficiencies is unreliable because my doctor ran some blood work expressly for this and the labs came back normal.
The night that my neck pain became so severe I had taken extra Cal/Mag so I started to wonder if this had anything to do with the pain and stopped it for a few days. I'm back on it this morning after reading the link you sent me!
My diet has consisted of mostly unprocessed foods and lots of fruits and vegetables, although a little heavy on the sweets and breads. I've recently started cutting back on sugar and wheat flour and blending fresh vegetables and fruits into smoothies each morning (to which I like to add almonds!).
I also am taking a vitamin B12 supplement in addition to a B complex, C, E, Probiotics, Flax seed oil as well as Propolis.
Thank you again for the good advice!
Posts: 35 | From North Texas | Registered: Sep 2014
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Calcium will bind with magnesium and keep it from being absorbed. Try taking magnesium by itself, away from calcium. Not mag oxide, as the "ides" are poorly absorbed.
Magnesium glycinate, taurinate, or other "ates" are good. Chelated is good.
Examples: Source Naturals, Ultra-Mag, with magnesium citrate, taurinate, malate, glycinate and succinate.
Natural Vitality, Natural Calm, with ionic magnesium citrate. The lemon flavor is good, I add a bit of sugar to make hot lemonade.
You are getting calcium in your diet. You need the magnesium because people with Lyme are so deficient, causing many symptoms.
The body pulls calcium from the bones and teeth to compensate when mag is low. This excess calcium in the blood calcifies the heart valves and leads to kidney stones.
Pumpkin seeds are high in magnesium, yes. I forgot to put that in the list. I started out buying them raw and roasting them myself, but no one in the family liked them much, so I stopped.
Look for many happy reviews of these at iHerb.com.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'd make an appointment with the doc who's 10 weeks out anyway if you can afford it.
Whoever you work with, it's going to be a partnership and you want to find a good match.
I saw 4 doctors until I found the one who worked best for me.
Good luck. The balance issues for me was babesia (a co-infection).
Magnesium can't be taken at the same time as some medications, so read the labels of your pills.
The rare times I've herxed, it was 3-4 days into treatment and only last for a day or two. Your pattern is very familiar to me.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Judie, Hello and thank you for the advice and information. The only thing stopping me from waiting the 10 weeks was going all this time without treatment.
My GP would not give me antibiotics after trying to tell her I have Lyme because she said that they only work within the first few weeks of infection. She said it would do more harm than good.
I was able to get some from an Urgent Care doctor but I doubt he would keep me on them until I see the LLMD that I would like - especially because in their eyes, I tested negative.
I appreciate your advice and will call the LLMD in N. Texas to see if they can put me on a waiting list. Maybe I will get lucky
Thanks for letting me know about the Herx 3-4 days into your treatment. It reaffirms what I was going through.
Cheers, Laurajean
Posts: 35 | From North Texas | Registered: Sep 2014
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"The only thing stopping me from waiting the 10 weeks was going all this time without treatment."
That's what happened to me. I had to see some lesser doctors til I got in to the better ones just to get the antibiotics.
One of the good ones didn't work for me, but the next one was great.
Get on the cancellation list. The 2 good doctors I saw had a big wait, but then both had cancellations. The only negative is that it's usually a next day appointment so you have to be ready to go in a pinch.
Posts: 2839 | From California | Registered: Jul 2012
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