Night spasms/ electricity/

[Shelleykirk]

I was diagnosed with Lyme about one and a half months ago by a LLD.
I had a strong herx (sp?) that included an intense flare up of electrical sensations and spasms in my body at night. The spasms are intense and almost feel like small seizures now. They pass through my entire body causing entire muscle groups to contract. I sometimes get momentary facial numbness with this as well. My question is whether, after 1 month of 3 g/ daily amoxicillin ... That this could be part of my herx or if I am likely getting worse. I am also concerned about bring alone with my 2 year old at night. I have had 2 normal MRI s and many other normal tests.
I'm not sure a neurologist would do much more, but should I see a new one?
My old one is extremely conservative about Lyme disease ..

[Ricobord]

Your doctor is on the board of ILADS.  I would assume he really knows what he's doing.  "Conservative" treatment doesn't cure Lyme.

I started my treatment expecting to continuously get better and for symptoms to drop off permanently.  HAH!  That hasn't happened.  One symptom (tingling) that came briefly and went well before I started treatment came back worse after treatment started. Also, my floaters got much worse and I developed sparkles and phantom moving dark spots on my peripheral vision (now gone). The good news is that my cognitive problems have steadily gotten better. My herxes have been primarily pain in my ribs and sleepiness/brain fog/irritability.

I saw the PA at my LLMDs office today and she said she is pleased with my progress, which was encouraging for me.  We saw 4 people in the waiting room before and after my appointment that were in really bad shape.  It was a sobering reminder of how serious this disease can be and how far I've come in only 31/2 months of treatment.

Hang in there and don't get too worried about symptom flares (unless they're serious and require a trip to the ER). I started keeping a checklist of my symptoms each day so I could track my progress.  It has been really helpful to see the trends and to realize when symptoms were gone.

[mojogal]

In San Antonio there are no doctors left and in the rest of the state they are all underground and big time which is a shame. You can find them if you join the support group on Yahoo by asking someone and they will call you or write you individually.  
My friend in Northern VA who has seen her LLMD for over 16 years told me in the day, her doc was brought to court by the medical board. She had so much research with her proving her point that they let her practice and I would see people from all over the country going to see her. Without taking any insurance and high prices, I couldn't afford it but people do come there and stay in the DC area in a hotel which is no chump change...very expensive. I often wonder what people do that don't have the money but are in desperate need of anLLMD.? Mine takes medicare which I have since I am on disabilitiy but first must pay and wait to get reimbursed. Better than nothing.  Shelley, let us know how things go.

[JackieCalifornia]

Egad, you really have been through the mill.  The doc you mention is highly regarded, good for you for finding him.  

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*****And PS to anyone else reading this:  we do not normally post docs' names in the website here, because in some states, docs have been run out of their practices and/or be brought up on charges by the local/state medical boards for alleged over-treating of Lyme -- in some states like Texas [so I hear] there are no Lyme docs left because they have left the state or are so far underground they can't be found.  
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But back to you.  What does your doc say?  Given that he's not an ignoramus like some docs, this is something he doubtless has run into.

It does sound like you are Herxing, and other than a good soak in an Epsom salts bath (= magnesium absorbed through the skin) and/or taking oral magnesium supplements, it's your doc who has to address whether to back off or change your meds.  Sometimes the meds are too efficient in killing the bacteria, and the cascade of effects you are having can be the result.

The reaction you are having at the site of your long-ago bite may be because the antibiotics are killing the bacteria that may still be in that spot.  Just a guess, not medically trained here.  

(Generally speaking, it is not unusual, from what I read, for a Lyme infection to go quiet to a level of low misery, and then spring up suddenly when another illness or life shock hits, like your melanoma surgery, or sometimes a reinfection with Lyme from a new tick.  The immune system can keep it under wraps until it gets overwhelmed.  I think that's what happened to me, when I got another dose of Lyme from a new tick, tho I never saw either one of them.)

Does the doc know you are taking lorazepam?  Make sure he knows *everything* you are taking.  Doesn't mean it's bad to do, but he's the one with the overall view of how all the meds interact with each other and with Lyme generally.

My best advice is:  call the doc's office and report your nighttime symptoms and ask what to do about them, and also about the lorazepam.  He's the man.  Lyme treatment generally and your complex medical history make it doubly important not to freelance on what you take.

I like your diet.  I did pretty much the same thing, and still eat that way.  I don't miss my old dietary ways at all.

"I have stopped being afraid and oppressed and I'm ready for a good fight."

This is the most important statement of all!  You go, slugger.  We're with you!

Let us know how you do and what the doc advises, okay?  Take care --  

[Shelleykirk]

Wow I am So grateful for all the input!  I am afraid that I didn't explain my doc/med situation very well. When my symptoms started about 14 months ago, it was right after I was diagnosed with melanoma. I had surgery and a sentinel node biopsy-- very stressful and physically taxing. Ultimately, my cancer was non-metatastic. A couple weeks post-op I started having electrical feelings, especially in my face, feet neuropathy and intermittent blurry vision.. I saw a neuro doc. He told me I'm stressed. Miraculously (and something a now consider a sign of how strong my immune system is,) my symptoms disappeared during the summer. During thAt time I did Getz pregnant and have a miscarriage. Several months after this (sept) I began noticing a strange pressure in my head and a feeling of fullness in my ears. I got a flu shot in the first week of Sept. After that all he'll broke lose... I had nonstop relentless pressure in my head and ears. My head felt pressure when I spoke asnif my voice was reverberating in my head, the electrical sensations at nig returned. Saw a million docs. All the usual tests. Neg neg neg ( including a western blot that did not break down individual bands) one weekendmi noticed a strange pressure in my knees ( I was a trainer/fitness consultant before this stuff hit me) so knee problems were really unusual.
My allergy doc decided to run me on a light course of amoxycillin. It was the first thing to help my head! So then, I went to ILADS and found a LL!D, Dan Cameron in Ny. He has had a Lyme clinic for 20 years, dignosed me immediately, and put me on 3 g amoxycillin. They use doxy/ amoxicillin/ azythromyicin equally. The mess caused a general malaise, followed by incremental lowering of pressure and fluid in my kneed BUT my quads feel as in I am being stung by bees at nigt as soon as I begin to relax. The worst spot by far is at the sight of the bite and swelling area that I had when I was pregnant more than 2 years ago! I live in a totally Lyme endemic area but if I did get Lyme while pregnant.... It was almost a year after the bite before I had any symptoms whatsoever.. Never had typically flu/ stiffness etc. So currently, the clinic wNts me to add 1 pill azythromyicin to mybregimen.. I can't do doxy because of the melanoma. I am also trying homeopathy. I do acupuncture every week and have started cranial sacral therapy.. (both help!) my diet is no sugar/alcohol/white flour/very little beef/pork. I eat all organic whole foods, green joice 1x per day, eat sea vegetables, raw coconut cream, flax oil tons and tons of raw/cooked veggies and legumes. I eat eggs,chicken,yogurt, but no other dairy....  I take hot hot baths and exercise as I can. My present state is ok during the day. I have some weakness in my legs in the morning, i think this is caused by all the night twitching and vibration. My balance is still great though. I have intermittent pressure and a need to limp on my right (right knee) but not every day. On most days, my head and ears are now under control. At night I am afraid to sleep. It feels like a supercharged electrical storm in my body every night,  and my right quad burns and stings. I  am again hoping that the intensity of the electrical uprising is a herx. I am going to take some lorezapam on the really terrible nights so I can sleep though it may interfere with my homeopathis process. .......Any other advise for alt therapy or input on the amoxicillin / azithromyicin cocktail I am supposed to start would be so helpful!,, I am learning as I go!  I will literally do anythingnto deal with this. My attitude is that this is war and im not f'n around so my bacterial better watch it.   It's on.
I have stopped being afraid and oppressed and Im ready for a good fight.
We desperately want to have another baby and I just turned 41. I believe the body has an incredible capacity to heal.. I am just trying to find the best path, in part, by learning from other people's struggles/journes. Sorry this is so long! Yikes, many many thanks!,,,,

[JackieCalifornia]

PS meant to say, I've read that any kind of magnesium that ends in "-ate" is supposed to be more easily absorbed by the body than other kinds.

I take one that has magnesium malate, orotate and aspartate in it, but most kinds have just one "-ate" type, and that works too.

[mojogal]

I agree with Jackie. Are you on any antibiotics? I am really sick and my vision is poor because I am going through herx now, so I may have missed it.
My LLMD told me I could back off my meds if the pains, including those electrical pains, get too intense. So far, I am able to handle it, I am also going through a period where i sleep more than ever which is part of it.
I was in the hospital for almost 2 weeks about a month ago and I had to take magnesium supplements and I take them at home. The magnesium take care of a variety of issues and I do feel better on them. So Welcome and wishing you healing thoughts and we are here for you.

[JackieCalifornia]

Welcome -- sorry to hear about your misery.  We hear you.

-- "I was diagnosed with Lyme about one and a half months ago by a LLD."

Is this a different doc from your old neurologist you said is old fashioned?  I'm assuming so.  I would not give up on the LLD yet -- it's early in your treatment.  I would however see the LLD about the symptoms you are having.  It does sound like a Herx [short for 'Herxheimer reaction', named after some guy named ... Herxheimer], but if the Herxes are too strong, then the doc might back off on the treatment a bit and sneak up on the meds levels -- but that is for your doc to decide, and s/he *should* be told you are having these reactions.

The good news about a Herx is that it's killing the infection, because the symptoms are from the die-off of the bacteria, but too strong a Herx is counterproductive.  I'd call the doc's office and report the symptoms, and ask for advice or an appointment soon.

-- "I had a strong herx (sp?) that included an intense flare up of electrical sensations and spasms in my body at night. The spasms are intense and almost feel like small seizures now."

Yes, this could be a Herx.  It could also be the effects of the infection, I dunno, I'm not medically trained.  It's a question for your doc.  I would suggest you ask the doc about taking magnesium (Mg) supplements:  Lyme bacteria apparently use up Mg, and muscle spasms and heart irregularities can be a symptom of low Mg.  The US diet is apparently often low in Mg to start with, and then to be feeding a Lyme infection just makes the situation worse.  Blood tests do not, from what I read, show low Mg levels until the cells are depleted, because the body keeps hauling Mg out of the cells (where the Mg is stored) to keep the blood levels at par; when the stored Mg in the cells runs low, that's when the muscle twitches etc begin.

-- "My question is whether ... this could be part of my herx or if I am likely getting worse."

I'd be inclined to think it's a Herx rather than you getting sicker, but I'm no doc.  A Herx by definition is a worsening in symptoms from the toxins the dying bacteria release into your body.

-- "I have had 2 normal MRI s and many other normal tests."

MRIs are not particulary useful in diagnosing Lyme.  A better test is said to be a SPECT scan, which looks for areas of low blood flow in the brain, as a result of swelling from the Lyme infection.  An LLMD would be more likely to order a SPECT scan.

-- "I'm not sure a neurologist would do much more, but should I see a new one?"

So ... is your "LLD" that you are seeing also a neurologist?  I am thinking that your doc may not be as much of a Lyme specialist as s/he thinks.  There is no specialty in medicine called LLMD, it's a point of view.  Unfortunately, neurologists and infectious disease docs are two of the specialities LEAST likely to take a progressive view of Lyme.

That you are being treated with amoxicillin alone tends to make me think that perhaps your doc is not a progressive thinker on these matters.  Did the doc test you for other possible diseases also carried by the Lyme ticks?  Based on your symptoms, an LLMD would do that if anything beyond Lyme is suspected.

-- "My old one is extremely conservative about Lyme disease."  Yeah, many of them are.  I went through 20+ docs before I learned that there was such a thing as an LLMD.  I had heard of Lyme, but had no clue about the mess the medical community is in.

So, bottom line, you may want to consider a new doc, but I wouldn't blow off the current one yet.  You need someone to be watching over you while you find and transition to a new doc, if you decide to do that.  

Your profile doesn't say where you are (geographic area), but if you let us know we might be able to suggest some ways to find a local LLMD.

While you're considering a transition, I'd keep seeing the current doc and trying to adjust meds so you aren't suffering -- and do ask about taking Mg supplements.  It made a big difference for me, but I've also had (nonLLMD) docs sneer at me for taking Mg.

Take care, let us know if we can help, okay?  And PS, the Mg will help calm the feeling of desperation I remember so well.