posted
Hopefully someone can help me. About 2 weeks ago, I was diagnosed with Lymes.
It all started in February when I got what I thought was a very bad flu including a terrible headache. I didn't go to the doctor and just fought through it. A few days later, the flu symptoms went away, but the headaches remained.
After a few months of various blood tests and MRIs, one doctor gave me the blood test for Lyme which indicated positive. My only symptom was the headache.
I am now on Doxy 150mg 2x a day (15 days so far).
Headaches remain and are taking over my life. The strange part about the headaches is that they start around mid-day and get progressively worse until I lay down in the evening and then they go away. I wake up without the headache and the process starts over.
On the weekends I have very minimal headaches which tells us that work (probably the computer) inflames the blood vessels where the bacteria is sitting, but that is a guess.
Can anyone help?
Posts: 7 | From New Jersey | Registered: Jun 2010
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
IMHO, your doxy dose may be low. Headaches were one of my most debilitating (REALLY debilitating- all day long) issues when I first contracted Lyme and have not returned since I went on IV Rocephin. I had tried 2 months or orals prior. Headaches= Lyme CNS penetration or herxing from treatment. If the first, you have to be on something that can get into your CNS, which means a drug that has a small molecular size in order to cross the blood-brain-barrier.
Are you seeing a recommended Lyme-literate MD? If not, I'd highly recommend it. Go to the Dr Referral section of the Flash Discussions and post a request for an LLMD in your area.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
Thanks Dawn. I am not seeing a Lyme literate MD yet, but am trying to find one. I do have an appointment tomorrow with an infectious disease specialist who has a few primary areas of expertise and one is Lyme disease so do you think that is sufficient?
Posts: 7 | From New Jersey | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What helps me:
Magnesium, Calcium, Fish Oil, and Turmeric. Corydalis is an herb helpful in pain relief, too.
And lots of WATER - & Green Tea.
Rest in the DARK, in QUIET. Or with soothing music.
quote:Originally posted by Keith55: [QB] Thanks Dawn. I am not seeing a Lyme literate MD yet, but am trying to find one. I do have an appointment tomorrow with an infectious disease specialist who has a few primary areas of expertise and one is Lyme disease so do you think that is sufficient?
If he's an ID doctor you will likely be very disappointed in this dr.
The only glimmer of hope is that he will treat you for about 4 wks. That's all ID drs will do for lyme patients.... unless this one is one of those rare LLMD's who happens to be an ID dr.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Keith,
I'm so glad that Lymetoo caught what my eyes totally glazed over. She is correct in that most infectious disease doctors really don't know much about the severity of lyme or much about treatment. I do hope you can find an ILADS-educated LLMD soon. Good luck.
===============
This explains WHY you need an ILADS doctor for proper assessment:
ILADS - International Lyme & Associated Diseases Society
- be sure to read all the articles in "Articles and Presentions" Get the DVDs of ILADS of past seminars. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
How would you descibe the headaches. Are they in the front or the back? Is it an ice pick headache or more of a pressure headache?
My understanding is that Babesia headaches tend to be more of a pressure or odd sensation and are located more towards the back of the head.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Hi, Midrin is a prescription migraine med that I have used in the past. It takes the edge off, at least. God bless you; hope they get better soon.
Posts: 113 | From CA | Registered: Jun 2010
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posted
I used to have really bad headaches all the time, then they went into the face bones as well.
I still have them, but not anywhere as much as I used to and usually not as bad.
One thing that helped me for a while was Feverfew in tincture formula.
It does interact with other med/supps and thins the blood so if you are taking anything else and/or have any blood disorders or take any blood thinners, you shouldn't take it unless your doctor says ok.
Posts: 217 | From Earth | Registered: Feb 2010
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Ditto to Lymetoo and Keebler. You've gotta get into an LLMD; ID "ducks" will likely not offer the treatment you need, esp. with your CNS symptoms.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
Thanks all. You were all correct. I was very dissapointed. The ID guy says he really doesn't think I have it bc the igg was negative (though 3 bands present abnormal). IGM was positive, but he said that could just be the way my blood always is.
He said getting lyme disease in february is unlikely due to the cold weather. He says I need to treat the headache, but my concern is where the headache is coming from and what will be next. I see a LLMD in about 1 month, so hopefully we will make some progress.
After leaving his office I was so depressed because now i don't know if I am going down the wrong path.
[ 06-18-2010, 12:55 PM: Message edited by: Keith55 ]
Posts: 7 | From New Jersey | Registered: Jun 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
You need to go to an LLMD for correct dx esp since you have 3 pos. bands. You also need to be tested for co-infections of bartonella, babesia and erlichia which is what an LLMD will do.
Then you will know for sure. You can get Lyme disease all year round because ticks can hide under old leaves etc.
Make sure the dr you are going to see is an LLMD otherwise you won't get correct dx and treatment.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
ID docs here in Jersey (and elsewhere) are quacks when it comes to Lyme. My vet knows more about it than any of the 15+ doctors I saw trying to get diagnosed. 3 bands 'abnormal' and a positive IGM says yes, you have Lyme. Not only that, but a Lyme diagnosis is a clinical one - the tests are to aid in the diagnosis.
You'll be in good hands next month. However, please go back and edit your post and remove the dr name ASAP. just click on the pencil/papger icon on your post. We're not allowed to put their names up here, to protect their privacy.
Question about your headaches: Are they headaches, or head ACHES? As in, could it actually be muscle pain that starts at the back of your skull?
One of my first of many symptoms was what I thought was a headache, which turned out to be a muscle spazm at the base of my skull.
Poke around with your knuckle back there - can you find a painful spot? If so, press on it as hard as you can and hold and see if the rest of the pain in your head (maybe radiating across your ear, down to your jaw, or even up over the top of your head).
This is a muscle spazm, which constricts blood flow and will refer pain all over the place. It is typically caused by Magnesium deficiency, which is caused by Lyme.
If you are at work at a desk job, this would also explain why the pain would increase over the day, as you hold your head to look at your screen all day pulls on the spazm, restricting even more blood flow.
Getting rid of muscle spazms is tricky, but can be done. A 'trigger point' injection of Lidocaine into the spazm (or spazms - more than one are common), which blissfully numbs the area, but more importantly, the needle tends to break up the spazm.
Alternatively, have a loved one use their knuckle to press on the spot for as long as you can take it, and do this repeatedly. I know this sucks, but it will eventually force it to 'give' and all you will be left with is just a sore spot. Rest on heating pad, apply any type of lotion containing Arnica (which is an antispasmodic that does not require a prescription).
In the interim, I would suggest you get a topical Magnesium, as this is the most easily absorbed form. (Alternatively, you could do an IV, but you'd need your LLMD for that). Ancient Minerals makes a good Magnesium Oil - www.ancient-minerals.com
Once you are low, taking oral magnesium will not be absorbed enough to get you back to 'normal'.
If it turns out this is not the type of headache you have, I'm hoping this will help someone else.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Thank for your thoughts. I did edit the post as requested.
Sometimes it starts in the back of the skull, sometimes at the top, so I'm not sure. I'll give your ideas a shot. I do work at a desk job and this seems to make sense.
My primary doctor is convinced it is Lyme and while not a LLMD, her daughter has Lyme for 2 years now, so she has some level of knowledge.
Is it strange that I only have this one symptom? (aside from flu like symptoms when the headache started 5 months ago)
Posts: 7 | From New Jersey | Registered: Jun 2010
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I hope it helps.
It's not typical, but perhaps there are other things going on that you either shrug off, or don't even notice because the headaches blind you to other issues.
To have a PCP who's been through it with a family member is at least helpful. And hopefully if you need further treatment, you'll have caught it in time before any fun new symptoms pop up.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
quotes: "IgM was positive, but he said that could just be the way my blood always is."
"He said getting lyme disease in february is unlikely due to the cold weather." -------- Well, the first statement is just simply silly. In fact, non-sensical if you mean 'CDC +' when you say "positive". Presence of IgM antibodies indicate an on-going, active infection... by DEFINITION.
(Why IS it that these ID 'ducks', who are supposedly SO educated & specialized, continually make comments- when with their patients- that fly in the face of extensive research & even peer-accepted understanding?? )
The second statement is true, but in no means suggests you CAN'T come down with Lyme in February, esp. if you live in the woods & were out & about on a nice warm day.
It's also very possible a deer tick migrated from a "local" infected white-footed mouse... to You! I'm pretty sure that's how 1 or both of the adult male deer ticks on me (all night) got "sick".
I'd ask for a copy of the Western blot results & find an LLMD A.S.A.P. for further evaluation, at a minimum.
-------------------- I'm no doc. Just a recovered Lymie with several doctors & nurses in the extended family. Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Major migraine.
Get into a very dark room...go to bed.
Try sublingual(under your tongue) B6 = P5P/PLP by Source Naturals.
The label says "Coenzymated B-6".
"Vitamin B6 helps in breaking down both histamine
and MSG in the body. There is speculation that when the body uses up vitamin B6 to break down MSG, it leaves more histamine in the body.
Other chemicals that cause a depletion of vitamin B6 include alcohol, yellow dye #5, and many drugs."
low serotonin levels genetics shunting of the chemical tryptophan into other pathways histamine-releasing foods histamine-containing foods alcohol (especially red wine) nitrates MSG withdrawal from caffeine drugs that constrict blood vessels stress emotional and hormonal changes (menstruation, birth control pills, anger, and ovulation) exhaustion muscle tension the weather
Bb needs tryptophan (as well as many other of OUR nutrients).
From personal experience (son)...watch out for annatto which is added to many processed foods as a coloring agent.
It can be very troublesome for some people.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I have a friend who had this same symptom for years. That was her main complaint.
With proper treatment it got better. Good luck to you!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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