had a scare. thank goodness julie was home sick from school. i collapsed and was unable to call 911. She took care of everything.

I don't remember it but she said there were about 6 paramedics/police at the house at the time. I feel bad because I know she was hysterical crying but I couln't help her. It was like i was underwater.

All i recall is EXCRUCATING head pain beyond anything imaginable, wretching and such agonizing sensitivity to light that i couldn't open my eyes. when i did i could't see anything but blurs. also could not understand or hear properly or move out of fetal position. couln'd speak. then i just phased out of any coherence but agony and vomiting.

went by ambulance and stayed in hospital. At the time, I was only semi conscious so I was unaware of what they were giving me or doing but now understand i was on a morphine drip, dilantin, steroids and antinauseas.

They did tests and apparently ruled out aneurism or memingitis.

I am on the above meds except for morphine. I am on oxycodone for pain. I see the neurologist next.

Meanwhile, i missed my appt. with Dr. P, llmd due to being in hospital! so, i am still not yet being treated.

Serious question: can this be lyme related?
Or is it just a freak unrelated luck of the draw neuro/migraine accident?

i still feel pretty bad and am terrified of another episode.

I get migraines a regularly but this was a whole different thing.

Anyone have experience or knowledge?

It could be lyme related, it could be freak accident related, but in any case, it didn't sound normal.

Did the hospital give you ANY explanation as to why this happened to you?

If you can get a hold of the LLMD's office and tell someone ..the service maybe what happened and why you missed your appt, hopefully they can get you some appropriate treatmetn ASAP!

Sounds like they used more than adequate durgs with you...It would be great for an expert(llmd) to deicide what's appropriate.

(Darn... sorry abt the spelling ...this isn't my computer, and I mess up bad trying to make changes with it)

When these kind of episodes occurred for me..happended for many years..ducks said it was in my head....
I found rest, frequent nutrition, with protien, liquid worked best for me, and weak green tea and water helped.

If you are not too sensitive it might help to have a family memeber massage your hands arms and feet legs gently..maybe your back. You call the shots. It may help to normalize rhythms and patterns that went out of wack.

If you are not being treated, then it wasn't a herx.

Best bet is to get some treatment. If this is how your lyme manifests itself, then you have a serious problem. Furthermore, the doc may want you to start out treatment slowly so a herx does not precipitate another visit to the hospital.

So sorry to hear about your episode. Migraines and sinus headaches very first symptom late 80's early 90's for me. I'd love to hear follow-up to your hospital stay.

Lou is right...you need to see an LLMD ASAP and again not to scare you bu this is very serious.

Have you been tested for lyme and is it possible to work with a doc who is lyme literate until you can see Dr. P?

Last summer I got so bad and luckily my regular doc figured out there was a bacteria but didn't know what kind and put me on Doxy. Starting dose for me was 200 mg and honestly, I was herxing so bad but didn't know it at the time.

She used to have them nightly and they would last for 1-1 1/2 hrs..It was horrible..She would often come out of them exhaused and not remember anything..I am sure it was the bartonella,but I am not a Dr..Just know we have gone from nightly to one a week to one a month to almost never..Thank God..She has been on Doxy, Mino and IV Doxy and Rocephin..Something has worked..

Also has been on some psych drugs. She tried oxycodone and it never worked..I am glad!! But she doesn't complain of the pain much anymore.

I think it would be good to call the LLMD and see if they can squeeze you in. You need someone knowledgeable starting your treatment, ASAP.

I have found the headaches to be a complex mixture of Lyme, MCS, hormones, structural issues, and now babesia. I seem to need to keep after it from all directions. Each of these issues has its own impact on the immune system, and feeds back into the other problems.

I am lucky that the headaches are not bad constantly, though I have had to start oxycontin to keep it under control. I use hydrocodone for breakthrough pain, and fortunately it is still working.

Look up triggers for migraines. It well could be you had a pile-up of triggers that took you over the top. Foods, inhaled chemicals, flashing lights, all kinds of things can trigger the migraine response, and the sensitivity does build up. I find the ten days before menstruation is particularly vulnerable.

If you find you have been eating a lot of triggers lately, like cheese, chocolate, nuts, etc, that may be a way to manage it till other treatment kicks in.

Take care. Hopefully it was a freak event, and there won't be any reoccurances.

I appreciate your input so much. Really.

Can't stand the sight of food but making myself eat a litle helps some. Thank you for that tip.

I don't know what to make of this but think you're right - a couple things must be going on since things are escalating so fast and it is nothing to mess around with.

What a mess.

I haven't called back Dr. P yet so all he knows is that I was in hospital.

We already have +s igg and igm but needed to do full exam/consult. Plus he wanted to do more tests before planning course of treatment. Not sure whats going to happen now.

I made a promise to myself that I will contact him tomorrow no matter what or how I feel. Try to coordinate him with the neuros.

Do you ever feel like you need someone to help you do this stuff?

Finally went to the grocery today and found myself at a complete loss as to why.

Felt so sick and such a mixture of frustration, fear, bewilderment I started crying. Called home (glad I remembered that). Asked my daughter why I went to store. It was for birthday cake for JC.

Up until last week I really was managing. I so wanted to get the kids better. Thought I had more time...this quick turn of events has really taken me by surprise.

You're all inspirations to me.

andie

And hugs for Julie for being so brave and competent. And for JC and your hubby, on account of because.

One food I could always keep down, and that really helped, was chicken broth (organic, free range) with a bit of garlic and ginger stewed in it for about 30 minutes. I'd just drink the broth, not eat the ginger or garlic. Or a good quality organic vegetable broth, with the extra ginger or garlic.

And tea. I can always manage tea, especially a mild green tea with ginger.

I don't think it's coincidental that you decided to see the LLMD yourself, then got really sick. I have a feeling that you had a feeling you were getting seriously fragile. I'm encouraged that your insight and instinct are still working so well, despite all the pressure you're under and the illness you're stuggling with.

Many strange, terrifying, and horrid things have happened to us during this Lyme marathon; I wouldn't put anything past this disease.

I'm having success with my treatment, and I so wish the same for you and for your chilluns. It's a hard road, but I think with the understanding now about coinfections, yeast, detoxification, etc. -- the tunnel is shorter and has more light at the end than it used to.

All the best. And here's a pearl of wisdom from Elinor and Henry, in "The Lion in Winter'" -- it has gotten me through some bad, bad times:

Elinor: "There's everything in life but hope."
Henry: "We're both alive, and for all I know, that's what hope is."

All the best, please stay in touch.

PS -- I was going to edit and say what Mo said, but Mo said it better, so --- do what Mo said. Your second call tomorrow, after Dr. P, is to whoever you can most trust to come organize help for you in the most practical way.

Hugs anyway.

See if you can get medical records from your hospital stay. I know you said they ruled out meningitis, but that's exactly what it sounds like. See if you can find out (ASAP) what your opening pressure was with spinal tap, and also what types of meningitis they tested you for (lyme, viral, bacterial, herpes simplex). At the very least, you'll have that information when you see your llmd. I'll keep you in my thoughts and prayers.

I'm so sorry. You must have been so scared. Julie, too, what a brave gitl, sounds like she really managed this situation well in an emergency!

Ryan sends his best..

OK, now..this is it. Mothering in the sence you have been so tirelesly with JC and Julie must come to an immediate (temporary) halt.

Not mothering itself, that never halts ..just the way you have been so valiently taking care of the needs of your children without help and care for you.

It is for them that you must do this now.

Call in ALL re-inforcements..friends, family..you need them to take over and help bigtime..and you need to talk to Doc P and explain every detail, everything you are on now, and get in with him..with or without the neuro reports. Ask for a phone consult and an appt..because of this hospital episode.

Doc P will surely tell you if he thinks you need to go other routes, but this also can and does happen due to Lyme/TBD related stuff. You must be careful not to endeavor further in treatments without his expertise..to avoid contradictions

Call in re-inforcements and get hrlp with all, especially goong to Doc P..OK??

I know Doc J would say the same thing and may even kick your but a bit if he knew
( imagine Doc J kicking butt)

If he doesn't I will..

Oh..and we all love you.

Mo

i'm worried about you and although I'm not in much better shape - If I could, I would lend a hand. I am sorry for what you are going through. I know that you are trying to take care of your ill children as well.

You are ill. Until I got the name of exactly what happened, I wouldn't let it rest. You need to find out what is happening to your body. And, you may need this information later.

You may not have the energy right now. Perhaps when you feel stronger. Each piece of info. is critical to your care.

For example, when I collapsed in May and was suddenly paralyzed I didn't know that it was associated with Lyme. The drs. actually released me from the ER because they thought it was a panic attack! Here's how to breath into a paper bag miss. I had a root canal a week prior and the bacteria went to the brain and caused a sudden infection in the brain as a side effect of Lyme. I don't wish to scare you with this story.

Your symptoms do sound similar to meningitis (I have had it 2x). What I have learned is that the more info. I have the better. I am more knowledgeable than rheumatologists, pcp, neurologists, endrocrinolgists, allergists, etc., etc. regarding lyme, because of 20 years of my experience with lyme disease.

I am going to the llmd to have both of my children tested for lyme tomorrow a.m.. I strongly suspect both children have it, as they both have many problems.

We, and many other families, are carrying a very heavy burden. Somedays absolutely overwhelm me. I try to look upward and believe. Somedays I can't get my eyes off the pavement.

Know that I have and will be praying for you and thinking about you and your family. I hope that you will feel better from whatever this event was.

ok. this a.m. is the first time since last week I can think straight and feel well enought to post. So I am going to get it in fast.

Everyone-

I'm so sorry you've all gone through/know this kind of thing! It is evil. All of your posts meant so much to me for both the caring and the INFO!

Trust me, nobodys been driving the bus around here and we've been in a ditch. I've either been semi-conscious or out the whole time so I am only now trying to put together what happenend.

God bless Julie- she is my angel and I can't stand the thought of her worrying about me.

Mo...you know me so well. You are the best for me.Never mind I'm the worst with my own health- Like so many here I'm kind of on my own...(my HB not so good with this stuff). I called my sisters in Texas and they are trying to figure something out.

Crime...you are right...my sisters are so mad the hospital discharged me-my HB said they lifted me into the car-I was't even awake?! what the heck goes on with that? I'm sooo sorry you live with this - I don't kow how you stand it-with seizures, too.

Minou, Kam and River - I love you guys-always the best tlc/ideas. Again, my sympathy & gratitude for your suffering, wisdom and kind hearts.

Lou,Snow,Biting,Lymemom, Paisley- Shoot. This is some nasty stuff and I'm afraid of any meds at this point. How confusing and scary!! More sympathy and appreciation I can't even believe. Thank you for your wisdom. Should I just let Dr.P guide ?

Called Dr. P and gave him a quick update-he wants to see me NOW...I'll keep you posted.

Called the neuros/hospital- they also want to see me NOW-apparently I was already supposed to be there and they did't know what happened to me!

My husband said he didn't know becasue he was so exhausted when the docs were telling him what to do and he never looked at the discharge papers!

Everyone mentioned a things that may help piece tigether the puzzle:

Please tell me what you think!

What questions to ask, what tests to get, etc. Should I metion Lyme to the neuros at the hospital??

Here's some of what I know:

In august, while at JC appt, Dr. J drew labs on me. He told me to see Dr.P but I felt like I was managing so I held off.

I had +s /equivs wb igg/igm for: 18,28,31,34,39,41,45,58,66

neg-pcrs for co-infects

Had malaria in Africa as teenager

1. have regular migraines for years- escalating in frequncy over last couple years...family history...mine are rougher and don't seem to have triggers other than "cycle". (Whole head, vision, hearing, nausea, etc)

2. Had minor oral surgery/ dental work 2 weeks ago- 3 days worth-lots of novocaine and mild jaw infection- put me on clindamycin. Took 2. (I know, I know, was supposed to do full bottle but felt better-so-you know- never mind)

3. Husband said I did not have elevated temp at hospital- was sub normal 96 (rectal)Doesn't that rule out meningitis?

4. Heart rate/Blood pressure was low

5. Apparently they never did spinal, mri-only cat, don't have records? of labs? I don't know what the story is...My husband was very tired and asleep during parts of my stay so he's not sure what went on.

5. The morphine and anti nauseas make sense.
Why streoids and dilantin?

6. Still having sweats and chills but no big temps

7. weird red sunburing on face - (not taking any meds but ibupr)

8. only nausea and hairline pain today. food revulsion. forcing soup helps... Thank you!!!

Thak you all so much for your unbelieveable kindness...

By the way...today is my big 50 B'day!

Yup. I made it.

Yesterday was JC's 7th! my little valentine. He made it, too.

love you guys so much

andie

I would highly recommend that you have a thorough check of your whole hormonal system. You are just a few months younger than me (Happy Birthday!) and normal female hormonal things are for sure happening.

On top of that, Lyme and Co. messes with your hormones big-time. You want to check DHEA, pregnenolone, testosterone, estrogen, progesterone, thyroid, cortisol, etc.

Marylynn Barkeley, who is doing major research into the effect of the steroid hormones (includes estrogen and progesterone) on your immune system, says day 20 of your menstrual cycle is the best day to do the testing for the sex hormones. I will be hearing her speak again in a week, and will pass on any insights.

But I know these kinds of headaches can be caused/made worse by imbalances in the hormones. Lyme messes with the HPA, which is the ordering station for all the endocrine glands, so things are usually off. They need to be carefully balanced, as many work in feedback pathways.

My doctor feels very strongly that babesia is behind my worst headaches. It seems he may be right, as treatment is bringing out the more classic babesia sx, as well as increasing the headaches. You know the saying about the only way out of hell is to walk through?

I'm hoping he is right, but continue to look for any other possibilities. Bartonella is another one that is associated with severe headaches. I'm sure Dr. P will be looking into that.

BTW, my one and only seizure was triggered by sheer exhaustion when I last moved house. Don't underestimate the toll everything you have had to handle can take on your body when dealing with these illnesses. I agree with Mo. Call in the troops! You need help, and this is serious.

Hugs to you and your family.

Glad to hear your LLMD will get you in promtply, and then a return trip to the hospital too.

Here's to the BIG 50 but to a healthier year ahead of you. Happiness will come later as you get back to your old, NORMAL self.

This set off a rash and strange waves of tingling, plus numbness all over my body.

It wasn't until another year passed that I got a diagnosis and treatment started.

So, looking back, either the zithromax caused a herx, or the dental trauma caused an intensification of symptoms.

Maybe this might apply in your situation. Just a thought.

I'm so sorry you have gotten so ill. I hope your appts today offer hope and wellness. I'm really glad to hear your LLMD can see you today.

Love to you and your family! And happy birthday!

------------------
oops!
Lymetutu

Breathing now that we heard from you. Whew.

I don't know why they didn't do a spinal tap. Meningitis can not be ruled out without examining the spinal fluid for white cells. If cells are found, they culture the spinal fluid to try and determine what 'kind' of meningitis you have. If it's lyme meningitis, the probability of getting a positive result is low.

"have regular migraines for years- escalating in frequncy over last couple years...family history...mine are rougher and don't seem to have triggers other than "cycle". (Whole head, vision, hearing, nausea, etc)

Ditto.

Had minor oral surgery/ dental work 2 weeks ago- 3 days worth-lots of novocaine and mild jaw infection- put me on clindamycin. Took 2. (I know, I know, was supposed to do full bottle but felt better-so-you know- never mind)

Ditto and relevant. I had dental work 2 weeks before meningitis in December.

Husband said I did not have elevated temp at hospital- was sub normal 96 (rectal)Doesn't that rule out meningitis?

Ditto, and no. My temp was subnormal with spikes of 100.0, 101.0, etc.

Revulsion to food.

I don't want to scare you, but I do want to inform you right now and want you to know that I just saw a red flag on your last posting. You had oral surgery and an infection! OMG

Do you recall from my post that I collapsed in may and was temporarily paralyzed? I had just had oral surgery a couple of days before that and had gotten an infection. I did not know it at the time, and the ER drs. had no idea what they were dealing with. My llmd and a few other drs. confimed later what had happened to me.

The root canal that caused the infection in my mouth went right to my brain. I had what is called Guilllan-barre syndrome - a paralysis due to a bacteria! Basically, it was a tooth infection that became a brain infection - similar to meningitis. Again, I've had meningitis twice because of my lyme disease already. The symptoms were similar with the head pain, but I had never been paralyzed before, so I thought I was having a stroke at the time.

Please take care of the infection in your mouth. My llmd is having me remove all four root canals that I have (had 2 removed so far) because this is such a serious complication for lyme patients. I have read much about Gigi's posts on dental health since learning about the complexities and seriousness of dental disease and how it contributes to our overall health.

Have just caught up with your posts a bit - how did visit with LLMD go? Have you got any answers yet? Sounds awful what you've been through. Probably a birthday you'd rather forget

I'm so glad you are in with P.

I'm sure he has taken this on, and may have given you info and advise already.

That WB..well..you have bells ringing there.

My best advise is, initially..look to the Lyme (and probable co-infections, they often don't start showing on pcr till Lyme gets knocked down some, kind of like that weasel game at carnivals..bop one on the head and the other shows up)

I do hope your sisters can come! I'm glad you put out the call. I know it's hard to do, but no getting around it..you need help!

..and you are very strong and capable in handling the intense initial med eval and all,
you know allot. That's a big job.

I would not talk Lyme with the neuro's..
they can get pretty funky over the mere mention, especially in the NorthEast. (where so many are suffering)..

I (might)would let them examine and run tests (but..NO spinal with them, unless Doc P says so..Lyme has a very low yeild in CSF, and could work against you later with insurance co..I would ONLY do a spinal if Doc P wants it, and even then should be under his guide running specific tests for many levels to check, as per his order, if at all)

I'd let the neuro's do their thing testing wise (not treatment till you get the full LL eval and so on)..and get a copy of everything any Doc, radiologist, ect has written about you through the hospital stay ..and also get your MRI films.

You can get every record from the hospital as per your request, check into who saw you..but they are required to give you these records if you ask for them..
plus anything they do thereafter. Any past records would help, too.

All this is important for a thourough LL eval, which IMO is the right thing with that WB and all else.
The LLMD's are nothing if not thourough. You'll get allot of answers.
Also, the LL neuro Doc K is very good, you may be referred there. He's a bit "crusty" in his manner at times, but knows Lyme and the brain very well. The LL's use his reports and initiation of tx reccomendations..sometimes..but not necessarily his advise on duration.

See..you already have your work cut out for you..that's whay you need help with regular life stuff in the meantime.

Big hugs from all of us,
Mo

Don't know if you saw this yet, and maybe not necessary for you to now..but here is Doc J on WB bands:

--------------------------------------------

Charles Ray Jones, M.D.

Addendum Regarding Lyme Serology

There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.

Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.

CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.

CDC Western Blot IgG surveillance criteria includes 18, 23, 30, 37, 39 and 93 and excludes bands 31, 34 and 83.

It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.

IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction. This is the case with any infection including a Borrelia burgdorferi induced Lyme disease.

The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.

This does not make sense.

The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 6000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives, not false negatives.

Rev. 2/25/04

--------------------------------------------------------------------------------