posted
Hello-I have been suffering from a constant daily headache (as in no relief) for the past nine months EXCEPT when I was in Israel for 2 weeks in August (which no one can explain).
MRI/MRA/CT show nothing 'unusual' except for a small 'scar' on my brain which causes me to 'fail' my field of vision test but the neuro-ophthalmologist said I was probably born with it and not to be concerned.
I have no 'classic' migraine symptoms-no nausea, sensitivity to light, sound or smell, I basically can function as a 'normal' person, just in a great deal of pain.
I've been to several headache clinics and been through many of the abortive/preventative migraine meds, none of which have done much good. Their current diagnosis is new daily persistent headache.
I have not had an LP, as it is painful and expensive, and I have no symptoms to suggest that it would be Pseudotumor Cerebri, according to the docs.
I have TMJ, but according to the specialist, it is not causing my headaches.
I 'had' lyme when I was about 17 (I'm 26), it was discovered as a fluke during a blood work up, and I was treated with antibiotics and thought I was 'fine' since I never really had symptoms and had no rash/bite. As part of the headache workup they retested for lyme, and the test came back negative. I'm currently working with a 'functional' medicine doctor who have my organic acids tested, and I came up low for B12. She mentioned that lyme could be a possibility, even if the 'standard' tests weren't showing it.
You all seem so knowledgeable that I though I'd see if this sounded familiar to anyone as it relates to lyme-I know you aren't doctors, but very well informed patients, and honestly I think you probably help a lot more people than most doctors!
Posts: 19 | From new york | Registered: May 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
TMJ and headaches are symptoms of low magnesium.
Low magnesium may be due to a Lyme infection, as the Lyme bacteria use large quantities of it, which depletes our cells.
posted
Oh yes-I do take magnesium daily for the headaches,and I recently switched to 800mg of magnesium glycinate, which supposedly is better absorbed by the body.
Posts: 19 | From new york | Registered: May 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
As I'm sure you have already tried to solve, I would be very interested to determine if you can recreate the conditions of your trip to Israel that afforded you the only relief from your headache thus far.
Have you been on any other plane flights before or since your headache began? Traveled to any other places with similar elevation or climate? Have you stayed anywhere else for an extended period of time? Did you eat or drink anything different while in Isreal? If you haven't already, I would begin to look at elements of the environment you are in now, and how they might differ from your stay in Israel.
That is a very intriguing piece of the puzzle. Of course it could be a fluke, but 2 weeks out of 9 months begins to look significant.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Make sure you are not being unknowingly exposed to carbon monoxide in your home or car on a daily basis.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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quote:Originally posted by nenet: As I'm sure you have already tried to solve, I would be very interested to determine if you can recreate the conditions of your trip to Israel that afforded you the only relief from your headache thus far.
Have you been on any other plane flights before or since your headache began? Traveled to any other places with similar elevation or climate? Have you stayed anywhere else for an extended period of time? Did you eat or drink anything different while in Isreal? If you haven't already, I would begin to look at elements of the environment you are in now, and how they might differ from your stay in Israel.
That is a very intriguing piece of the puzzle. Of course it could be a fluke, but 2 weeks out of 9 months begins to look significant.
I wish I could re-create it-I've flown before and I had headaches before-those were treated with Imitrex and all was good. This is the first time in my life I've had something like this-where the headache is 'stuck.'
I have been out of our apartment at my parents/in laws for 4-5 days with no relief, but no where for as long as that trip.
There are so many factors that are different between here vs there, which is why no doctor will even begin to explore it, except for my new 'functional medicine' doctor, thankfully, but even she admits there are so many possibilities.
Posts: 19 | From new york | Registered: May 2009
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posted
As you probably know, one difficulty with headaches is they have so many possible causes.
I had a daily headache for most of a decade. Turned out my vitamin 25D was low and 1,25D high, a combo fairly common in lymies. The symptoms of hypervitaminosis D include headache. When I reduced my vitamin D intake, the headache went away within a few weeks.
So, it may be worth having both your 25D and 1,25D tested.
Posts: 727 | From USA | Registered: Mar 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
s,
i had a similar thing happen to me when i traveled to Italy for 10 ten days last August.
the temperature was scorching -over 90 every day, and i literally melted in the sun doing the sightseeing thing. needless to say, i FELT great.
the whole time I was there i had almost NO lyme symptoms. it was very puzzling to say the least.
The only conclusion I could come up with was that due to immense sweating, (our clothes were soaked by the end of each day) and I drank SO much water, that the heat must have killed the toxins and/or lyme bugs.
We also walked like 6 or more hours each day.
I know this sounds strange, but detox and exercise is the only thing I could relate to the change in symptoms.
When I returned home, I seemed to make a major hurdle in treatment. By October, I was reduced to Cat's claw instead of zithromax.
so, i wonder...
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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bettyg
Unregistered
posted
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
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posted
Thanks so much for responding-i have been PMing with another member, and things are becoming interesting.
As I mentioned, I actually 'had' Lyme about 10 years ago-I had blood work done bc I wasn't feeling well and they said my blood work came back positive-I had no bite, no recollection of a tick, no rash etc-only the blood work that said I had it.
I was by no means an outdoorsy girl, i was a junior in high school, and we lived in the suburbs of NYC, in a subdivision neighborhood, not in the middle of the woods-i couldn't imagine how i'd have gotten bit by a tick-but maybe it happened years before?
So, we treated with the antibiotics and I went on to live a (relatively) healthy life I think, although I do have TMJ (i have a night guard i wear), the headaches, I had my tonsils out in college after years of bad throat infections that felt like strep but weren't.
Currently, my chief symptoms are:
Headaches-daily, pain is usually at a 6, mostly left sided, near my temple and the above my eyebrow Facial pain-mostly pressure, like someone's fingers are pressing down TMJ- i have a night guard that I wear Jaw pain-dull ache, nothing that prevents me from eating/talking, but its there, more like background noise Tight shoulders: they generally don't hurt unless someone touches them-every doctor has commented on them, but ignored Neck pain- 'spot' in my neck that when touched makes me jump, radiates pain to my head, but different than the headache pain I don't think I have fatigue, although I can sleep really late (12 hours) if not woken, and feel worn out at the end of the day, but I work full time (from home for the time being bc of the headaches) at least 9 hours a day, and i cook dinner each night, and don't consider myself any more fatigued than the average person who does this-but who knows, maybe i just compensate well!
I'm beginning to wonder if maybe the Lyme never went away...
I'd like to see a LLMD ASAP-please PM me if you have any suggestions in the NYC/NJ/Conn area.
Thanks so much! Stacey
Posts: 19 | From new york | Registered: May 2009
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quote:Originally posted by dguy: As you probably know, one difficulty with headaches is they have so many possible causes.
I had a daily headache for most of a decade. Turned out my vitamin 25D was low and 1,25D high, a combo fairly common in lymies. The symptoms of hypervitaminosis D include headache. When I reduced my vitamin D intake, the headache went away within a few weeks.
So, it may be worth having both your 25D and 1,25D tested.
I've had my Vitamin D levels tested-are these 'special' tests above and beyond the 'regular' levels they check?
Posts: 19 | From new york | Registered: May 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
My niece who has Lyme and Anaplasmosis has suffered on-going, searing headaches for years.
The only time she got any relief was when she flew to Texas for a one week vacation. We have tried and tried to figure out why that "cured" her temporarily, but we can't.
Best of luck to you. I think headaches are one of the worst things to suffer from.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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