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» LymeNet Flash » Questions and Discussion » Medical Questions » EXTREME Neck pain/stiffness

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Author Topic: EXTREME Neck pain/stiffness
ErinKimberly18
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Advice would be so helpful...

So for a few years now I've been very tired all the time, especially in the day. I've been at my current job for about a year now and all of a sudden early winter, maybe December I became even MORE tired in the work environment & also falling asleep two hours earlier than normal each night.
About two months ago I started getting really bad neck pain & even more exhausted, so I went to the Doctor. She conducted blood tests & it turned out I have an under active thyroid &&& she also found I have Lyme disease as well.
She put me on Doxycycline, my first few weeks my body was in a ton of pain, my neck the worst. My last week on doxy I felt GREAT! I had all of my energy back, and it was as if I never had any symptoms what so ever, I was ecstatic! When I completed the doxy, a few days later it was almost as if the Lyme relapsed. Came back, I went back to my Dr. she put me on doxy again. It feels like I just got it alllll over again, except worse. The Neck pain WILL not go away what so ever and its starting to go to my spine area as well.
I know neck pain is a symptom for Lyme, but its so bad that now my Dr. wants to put me on muscle relaxers. (first she said take 4 ibprofens, 800mg- that didn't even make any difference at all, not even close). But I don't want to be taking all these different pills! What else can they do to get rid of this? She thinks I am getting muscle spasms and has nothing to do with the Lyme. Also wants me to get an X-RAY. But everything I read about Lyme I see neck stiffness/problems, etc.
Does anyone have any tips? or Thoughts? I asked if I could be recommended to a specialist, so hopefully they get back to me. I was sent specialists in NH, I'm hoping my insurance covers it.

Posts: 5 | From New Hampshire | Registered: Jun 2012  |  IP: Logged | Report this post to a Moderator
lyme-o
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Get yourself an LLMD pronto!!
Posts: 305 | From United States | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
Sammi
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What dose of Doxy were you given? It sounds like you may not have been treated long enough or aggressively enough.

It is very important to see a knowedgeable doctor. Besies Lyme, ticks can transmit several co-infections. Were you tested for any? Stiff neck can also be a symptom of the co-infection Babesiosis.

You can find a wealth of information at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

I suggest posting in "Seeking A Doctor" for a doctor in your area. Be aware that most Lyme doctors no longer take insurance.

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desertwind
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DITTO. Writing is on the wall. Get to a LLMD ASAP.

Do not waste your time with "doctors" who do not specialize in lyme. Post in the "Seeking Doctor" section.

Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Carol in PA
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quote:
Originally posted by ErinKimberly18:

She thinks I am getting muscle spasms and has nothing to do with the Lyme.


.
Take magnesium!

Posts: 6932 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Rumigirl
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Yes, to the magnesium. BUT, of course it is the Lyme! I'm sure that you have been completely inadequately treated. You need to get educated about what you need via the above link and other info here, and get the best LLMD you can afford (or even that you think you can't afford!). Not being treated for Tick-Borne Illnesses well is waaaay more expensive than the cost of a good LLMD and treatment!

When you post in Seeking a Doctor, I advise looking under your state and several surrounding states, so you can get the best care, even if you have to travel a ways. Lots of people travel long distances to get the proper care. This is only the beginning of the h$#%% you will experience if you don't get good care. Sorry to say.

Posts: 3669 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
hansemand
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check for bartonella
www.galaxydx.com

--------------------
hansemand

Posts: 160 | From europe | Registered: Dec 2011  |  IP: Logged | Report this post to a Moderator
ErinKimberly18
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Thank you all for the help! I appreciate it so much!
Someone got back to me in a Private message & informed me of a specialist here in NH. My Dr. called me today and actually referred me to that Dr. already! I really hope there's hope! I am so sick and tired of feeling tired, restless and in pain.
Sammi- I am given 200mg of doxy a day.. I have to take with food because it makes me sick otherwise. I am also on thyroid medication because my thyroid was under active. I wonder if the Lyme has anything to do with it.
Hopefully the specialist will be able to help!

Posts: 5 | From New Hampshire | Registered: Jun 2012  |  IP: Logged | Report this post to a Moderator
Maryland Mom
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LLMDs usually prescribe the average sized adult 400 mg of doxy per day for Lyme.

As for the neck pain and stiffness, this can be a sign of inflammation of the meniscus, which is the lining of the brain. This should resolve once the infection is under control. Meanwhile treating it symptomatically is okay, but muscle relaxants probably would not be much help if the neck pain is associated with meningitis.

Meningitis can be caused by different pathogens, both viral and bacterial. Most types of bacterial meningitis are true medical emergencies requiring hospitalization, but Lyme meningitis is a more low grade, slower moving type of infection that is usually treated differently.

Doxy is an appropriate treatment for this, but ironically, because it is working, it can cause intensification of symptoms known as a Herxheimer reaction, or Herx, as you'll often see it written on this site.

Herxheimer-type reactions are common when a person with Lyme first starts taking antibiotics for the infection, which can cause intensification of symptoms, and sometimes the development of new symptoms, such as your neck pain. If these symptoms become too severe, many LLMDs recommend backing off of antibiotics for a few days until you feel better again.

There is a lot of good information about the phenomenon known as the herx at this site. Use the search button located near the top of the page to search on this topic or any others.

Meanwhile make sure your doctor is aware of this symptom when it happens, since it is a hallmark sign of meningitis and should be closely monitored. Unfortunately, a doctor who is not Lyme-literate may not have a good understanding of how someone infected with Lyme may react to antibiotic treatment.

And yes, get to an LLMD as soon as possible.

Also if you have not found this already, there is a topic near the top of the Medical Questions page titled "Important information on Lyme and COs" Clicking on this topic will bring up links to a wide variety of helpful topics for "newbies" to this site.

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ErinKimberly18
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Thanks Maryland Mom. That really helps a lot! I just get really scared about the meningitis part, I really feel like I should go to an ER. I can't get into an infectious disease until next week and the neck pain is still so bad. I'm just not sure as to what to do. I don't want to spend the money for the ER, I hear they can't do much anyway. I have to wait a few months to get to the LLMD as well. I guess the infectious disease dr is good for now. I just worry that I have meningitis, I'm just worried all over.. I definitely think I have the Bartonella part as well. I just don't know what to do it's impossible to get in anywhere.
Posts: 5 | From New Hampshire | Registered: Jun 2012  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Don't expect the ID doctor to be helpful. I will pray that you find a good one, but the chances are slim.

--------------------
--Lymetutu--
Opinions, not medical advice!

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desertwind
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I developed a severe case of aseptic meningitis after brain surgery two years ago. I thought my lyme/co.'s were gone but they were not.

My Neurosurgeon said the meningitis was a reaction to the blood that escaped from my dura into my brain.

Infectious disease doctor said it was a reaction to the bovine patch they put in my dura.

LLMD said it was from the lyme and co-infections.

My CSF white cell count was close to 600. I was put on IV steroids and oral for 4 months.

If you do go to an ER and do have meningitis they may want to put you on steriods - do not let that happen unless it is life or death. Steriods will destroy you if you have lyme.

When I had meningitis I knew it. It was the kind of pain where you are knocked out, laying in bed screaming in pain, temperature, inability to move your neck especially in the up/down postion, light sensitvity, raised intracranial pressure, confusion, and the jarring from walking (which you cannot do with severe meningitis) is unbearable.

Mine was severe but the kind that comes with lyme typically will not be as bad and your CSF levels would not be over 150 white cells (this is what I was told).

If you do go to the ER with suspected meningitis be prepared to be poked and prodded and most likely have a spinal tap done to rule it ut.

Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Catgirl
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Don't waste your time with an infectious disease doc. I saw the best one in the state (highly respected). They are clueless about lyme (they under treat and deny it exists more than a few weeks). Then it comes back...

Your symptoms sound lyme related. Your neck pain could be babesia (another co infection that came with the tick bite). That's what happened to me. My neck felt like it was in a vise and I could barely turn my head. My head felt like it was swelling (lyme). My lyme specialist said that that was when I got babesia.

Is your LLMD affiliated with ILADS? If you haven't found an ILADS LLMD, you can go to www.lymediseaseassociation.org and they will email you some names.

Be sure you click on the ILADS link (International Lyme and Associated Diseases Society). ILADs docs are cutting edge.

Have you seen Under Our Skin yet? You can download it from hulu (just google title and hulu and it will pull up). Also the book, Cure Unknown is really good (definitely worth reading).

Call an ILADS doc and get on their cancellation list today. That's how I was able to be seen in 3 days. You may want to travel out of state too just to start getting your treatment going.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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MattH
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The Infectious Disease docs have a specific protocol, they follow it and it seldom works unless you start the ABX within 30 to 40 days of the bite. Get back on your antibiotics asap!

We have three infected with lyme here in our family. We travel 4 1/2 hours each way to the LLMD doctor and I am in Hounton (one of the biggest med centers in the world!).

Before I knew about ILADS I had called to make an appt with a IDSA MD. His nurse took the appt for my son and then 20 mins later called back and said how long do you think your son has had Lyme. I said possible 3 years. She said, oh the doctor does not see that kind of lyme patient and then hung up. I was pretty upset but she actually did me a big favor that allowed me to find my current LLMD!

I also had a stiff neck even after taking the ABX for 9 months. I get a glutathione IV (costs me 50 bucks) about once every 9 days and that keeps my stiff neck away. It also helps detox the liver and keeps my liver enzymes with in range.

Oral glutathione may not work as well but you can try it. You can get the IV from most ACAM MD's and DO's. Just go to www.acam.org and find a doctor near you. Many of us have multiple doctors to help us through this. I did not realize when I started how crucial a good LLMD is to our improvement.

All the Best, MattH

Posts: 607 | From Houston Texas | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
SickLYme
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I have had the same thing for years. My new doc says it's from the ebv cmv and confections...these cause swelling in the spine and neck causing pain and even meningitis.
She put me on garlic and lysine....and I literally have no more pain in my neck..

Posts: 148 | From AZ | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
   

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