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» LymeNet Flash » Questions and Discussion » Medical Questions » headache won't go away; need help

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Author Topic: headache won't go away; need help
diamondlyme
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hi everyone,

thanks to those of you who have already responded with your helpful and supportive answers. attempting to condense my post per a suggestion i received.

diagnosed with lyme back in september by an infectious disease doc. treated with 1 mo. doxy 200mg per day. when i didn't feel better after 1 mo., doc backtracked on his diagnosis, saying he had treated me for lyme so if i didn't feel better it must be something else. he sent me back to my internist who had sent me to him.


after many doctors was finally referred to a great llmd who was sure it was lyme. he put me on 3000mg a day of amoxicillin. because i had low white blood cells (2.8) and a positive ana, he sent me to a rheumatologist as a precaution to rule out lupus (she did). i had also seen a neurologist early on because my foot went numb for 4 days (what alerted me that something was wrong in first place)- he also thought it was lyme. made slow but steady improvement on the amox. and by january i was really feeling better.

3 weeks ago i caught flu and have taken a major turn for the worse. feel almost as bad as i did this fall- total lack of energy, foggy-headedness, inability to concentrate and depression, and a headache that will not go away.

don't know what to do anymore. was able to work through the pain this fall and winter, but don't know if i can do it much longer. i am exhausted and defeated. not sure the environment at my office helps- everyone is unhappy and the pressure is a lot to handle even when you are well.

last week told hr and boss i needed to take some time away from the office to figure out next steps for getting well. but don't know what they are.

here is what i am on right now: 500mg cefuroxime 2x a day, acidophilus, ester c, vitamins e & d, coq10, wellbutrin, ambien to sleep, and othro-lo and spironolactone to treat acne. i am 24.

what should i do next??? more vitamins? quit my job? additional doctors? is this just a virus or is it a relapse?

thanks for any help/ advice. my heart goes out to all of you.

[ 11. February 2008, 11:26 AM: Message edited by: diamondlyme ]

Posts: 4 | From New York | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
KS
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I'm sorry you are having such a rough time. I can appreciate your situation. I too was so sick I didn't think I could make it through another day trying to work and take care of 2 small children. It is an overwhelming experience in some many ways.

See if you can't work with your boss at reducing your workload and maybe work from home. I kept an open dialogue with my boss. We agreed that I was not in a position to work on any high-profile projects at that time and would take it a week or month at a time. I asked her to please let me know if my health was becoming an issue and that we would discuss options (i.e. my leaving). For some reason, this alleviated a great deal of stress for me as the ball was in her court.

The number one thing is getting you better. Don't worry about your career, etc. This is a small snapshot in time and you have PLENTY of years left to work on your career, friendships, etc. You are sick but it doesn't mean you will be forever.

I'm not sure what testing you've had done thus far. Is it possibly Lyme, sure! Do you need to rule out other possibilities, yes. I'm not sure what all of your symptoms are but I would definitely suggest a full endocrinology work-up. If our hormones are off, the symptoms can mimic many symptoms of Lyme disease. You could also consider being evaluated by a neurologist.

Certainly talk to your LLMD about what is going on for you. Could be a co-infection or a herx you are experiencing. Realize that many of us with Lyme experience the ups/downs. I've had weeks where I have have felt almost 90% and then WHAMO, I take a turn for the worse. It is mentally and physically draining. With time, the bad days become less intense and less frequent. Hang in there...this disease is a tough one for those of us who lack patience (which is certainly me).

Keep treating Lyme but definitely be sure you've appropriately ruled out other potential causes.

Keep us all updated!! You aren't alone...

Kristin

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sixgoofykids
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There are no easy answers to your questions, but I will give my opinion. [Smile]

Life is too short to work in an office where everyone is unhappy. That will cause constant stress whether you are sick or not.

At 24 you're probably thinking it's a great opportunity to eventually get to where you want to be .... that's the only reason I can think of to work there.

I think you are doing the right thing taking time off to figure out what you're doing.

I have had chronic Lyme for 35 years. Whenever I'm under stress, I am symptomatic, so for me a high stress job would make me sick.

Those are my thoughts on your work, I would find something I love even if it's less money/opportunity. You need a job that supports your health.

As far as your current immediate health .... it's very, very common for a virus to cause a flare in symptoms. When you get sick with something else, you really need to rest to help prevent a Lyme flare.

Also, you might want to be taking supplements to strengthen your immune system. I'm taking a lot of things, among them, vitamin C and Host Defense.

The good news is, the last two times I got sick, my Lyme did not flare. So, it does get better. Hang in there.

--------------------
sixgoofykids.blogspot.com

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Geneal
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I had a horrible bout of stomach flu during the summer.

I was so incredibly sick. Last time I felt like that I had hepatitis. [Eek!]

Anyways.....It really set me back with Lyme and co-infections.

It took me about 3-4 months to regain that ground.

Hope you can bounce back sooner than later.

This constant headache thing.....just makes me think babesia.

Talk to your LLMD and see what he/she says.

Hugs,

Geneal

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Aniek
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Have you ever been to a support group? I recommend trying to find a local support group so you can talk to Lyme patients in person. Check the support group link on the left.

You might also want to see a therapist, so you have somebody to help you work through the stress.

It's possible that your body is just taking a long time to recover from the flu because your immune system is compromised. I would definitely not make any drastic life changes based on 3 weeks.

It makes sense to me to take some time off and see if you start feeling better. Your employer has to allow you to take time off according to the FMLA.

But if you think the stress from work is impeding your improvement, then you need to take that into consideration.

I am an over-achiever and started law school part-time just months into Lyme treatment. I work full-time as well. I'm sure this has impacted my treatment, but I don't regret the decision. But that's me.

--------------------
"When there is pain, there are no words." - Toni Morrison

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diamondlyme
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thanks to all of you for these responses- you each make helpful points.

think the hardest part is that i thought i was through all of this! had no idea a virus could cause a relapse/ flare in lyme symptoms. i wasn't prepared to be back here again.

my mom is on my case that the antibiotics have lowered my immunity to fight off viruses. but i would rather deal with that than have lyme forever.

also my immunity has been pretty bad since i moved to ny and started this job 3 years ago...i basically get sick every few months (flu, cold, sinus infection).

any tips for this headache?

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JasonK
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I would try some anti inflammatories like ibuprofen or aspirin it may help - tends to help me
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yourtroubl
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How is your blood pressure?
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Curiouser
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This is probably going to sound silly, but try wearing sunglasses and see if that helps the headache at all.

I had a headache last week that just wouldn't go away.

No med I took would touch it and I've got some pretty heavy-duty stuff.

Ended up putting on a pair of sunglasses and the headache was almost instantly reduced. The next day, it was nearly gone.

Been wearing sunglasses ever since. Even indoors.

The headache could be photosensitivity from your flare.

--------------------
If you don't know where you are going, any road will take you there. - Lewis Carroll

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Peacesoul
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are you doing any detoxing?
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aklnwlf
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Hi there,

I've had the headache problem for 2-3 years. For me it's encephalitis.

Those would hurt the back of my neck and base of skull and I had alot of trouble eating cause pain made me too sick.

I take Diamox (diuretic) on a regular basis.

It helped those headaches alot.

The other type I have is from inflammation from probably Bart. I take Aleve, Vicodin, and Soma.

Also when pain is really bad I'd put an ice pack on my head and move it around occasionally to where the pains would be.

This I'd do for the inflammation only. Not on the back of the neck or base of skull.

I hate to resort to pain meds but I can't make it some days without it.

I'm fortunate enough to have a GP that works with me for the pain management.

Hope this helps!

[Big Grin]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Michelle M
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Ask for some samples of Relpax.

Can't take them often; max of 2x a week. But they really break the head pain cycle as nothing else can.

So sorry -- I can sure sympathize, having had constant headache for a couple of years prior to diagnosis.

As mentioned above, babesia is suspect also.

Hugs,

Michelle

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bettyg
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welcome to the board!

what do you do in your job? i totally agree if there is that much UNHAPPINESS ALL AROUND YOU daily, it's going to be worse trying to be positive and get rid of extra headaches from STRESS!

i also agree about sunglasses. in my newbie package, do a search using EDIT, FIND, and type NOIR sunglasses; you will find detailed info galore on these cheap sunglasses that are a miracle to us with PHOTOSENSITIVITY.

speaking of sensitivity to lights; your flurescent lighting is making you worse as well.

are you sensitive to NOISE/CHEMICALS?

it's a package deal of lights/noise/chemicals that hurt us so much; been like this for 38 years for me.

i use IBUPROFEN for my headaches.

do you wear RX glasses? i have LOW vision and think lenses; so if the AXIS is off just a little, i get migraine headaches; sharing that tip for what it is worth.

DO NOT GO TO INFECTIOUS DRS!
**************************

they are the ones who have made us WORSE except for about 1 dozen GOOD ONES WHO TREAT THE "ILADS" GOOD DRS. WAY!!

if you quit work, you have no money coming in; if they fire you, you can file for unemployment to have some money coming in .... this is LYME REALITY; you have to think about future and HOW EXPENSIVE CHRONIC LYME IS, and since you have had this since sept. 07; you now have CHRONIC lyme vs. short-term lyme.

if that infectious dr. would have given you antibtiocis for 3 months....extra 2 months to make sure ALL SYMPTOMS WERE GONE FOR 2 MONTHS; you wouldn't be on this board now; I'm so sorry to say! [cussing]

please go to ACTIVISM and read some posts there about trying to get the FEDERAL LYME DISEASE BILLS CO-SPONSORED BY ALL FEDERAL SENATORS/HOUSE REPS AND GET THEM OUT OF COMMITTEE .... so a FULL senate/house reps can VOTE YES on these.

please check to see if your NY senators/reps have signed on.

HILLARY HAS; I checked all pres. candidates; she/obama have from who is left.

MC CAIN HADN'T SO FAR! WHY NOT TO ARIZONIANS??
********************* ***********************

HAVE YOU ARIZONA MEMBERS EMAILED HIS OFFICES ASKING HIM TO CO-SPONSOR LYME BILLS?

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diamondlyme
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actually the sunglasses idea makes sense to me- generally the headache is a bit better at night. it is mostly at the back of my neck/ base of the skull and at the eyebrows/top of the nose. over the counter pain relievers haven't helped so far. i will try the ice pack.

in terms of detox i have tried panchakarma treatments (helped a bit mentally but was very expensive), and most recently reiki. so far the reiki healer hasn't gotten past my throat (in two hour long sessions). all the energy seems to be concentrated in my head, which makes sense given my symptoms.

i am not drinking any alcohol and eat very healthy. i do still eat sugar once a day (i.e. dessert)...i know i probably shouldn't do that but feel it is my only joy!

is this what you mean in terms of detox? is there something else you would suggest?

oh and my blood pressure is good.

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lymebytes
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I remember saying those words 2 years ago "I can't do this anymore" and I was only into this a few months, I have said them everyday since and somehow I have made it.

Lyme usually requires long term treatment, amoxicillin is one of my favorites, but it should be taken with Biaxin or Zith to kill 2 cell forms.

You can do this, there are people sick over 20 years, take it day by day, hour by hour when necessary, but I advice seeing your LLMD getting back into treatment. Click on the link at bottom of my post read some stories.

Hopefully you have been tested for co-infections? If not a good LLMD should know how to cover all bases.

Amoxi alone - isn't usually enough. Sorry, but truthful.

Take care.

--------------------
www.truthaboutlymedisease.com

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Peacesoul
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DiamondLyme, I never heard of the detox you mentioned.

I used to get horrible headaches. I get maybe one a month now.
when I started on abx, I pushed myself to detox. When I started daily detox, my headaches went away. Poof, just like that!

When someone has a hangover, one of the main symptoms is: yep, headaches.
Why, well a toxic liver will do that.

You maybe should check out some other forms of easy and effective detox methods like lemom water, detox baths, milk thislte (Also, you need to focus on your diet.

Hope this helps.

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Hides1
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Amoxi is great for Lyme but will only get you so far if there are other things involved. Make sure your LLMD tests you for both Babesia and Bartonella through Igenex FSH test and MDL tests. I had terrible headaches for years when the Babesia was finally found three years after the Lyme. Headaches dies down, I got bit again and now beleive I have Bartonella headaches and are being treated for that. SO beware of coinfections and make sure you are treated- the headaches can be overwhelming from much inflammation.
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MommaK
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Hi [hi]

Sorry you are having constant headache. That was my daughters worst symptom. I have some questions about your head pain.

What pain level would you say it is at on a 1-10 scale with 10 being the worst?
Does it fluctuate much?
Does it interfere with sleep?
Have you tried any migraine meds? Did they help?
How about seizure meds?
Caffeine?
Muscle relaxers?
Nerve meds?
Do any OTC meds help at all?

Good luck!

MommaK

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DoctorLuddite
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Where in NY are you?
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diamondlyme
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lymebytes- saw my doc last week and he has added 250mg azithromycin to the 3000mg amox (went back to amoxi from ceftin). we also discussed the possibility of putting me on i.v. i don't live close to my doc so would have to go the catheter route, which terrifies me. but i would be willing to do it if i thought it would really speed my recovery.

peacesoul- saw a naturopath last week who has started me on a pretty intensive detox regimine. honestly don't even know what all the stuff i'm taking is/does. he found really high toxicity levels in me and is trying to correct them with supplements. i am also on a totally yeast-free/ sugar-free diet now. also here is a link to an explanation of reiki:

http://en.wikipedia.org/wiki/Reiki

have found it to be very helpful with putting me in a better state of mind to deal with my illness.

i had an accupressure session yesterday that helped the headache a lot temporarily. the sunglasses have also helped as has the ice pack. but i sense it lingering still and wouldn't be surprised if it came back.

worst symptom at the moment in addition to headache is extreme fatigue and total lack of physical energy. i feel like a senior citizen. probably i will have to go back to work after next week and am not sure how i am going to do it if i don't get some energy back.

mommak- scale of 1-10 an 8. it does fluctuate. doesn't interefere with sleep except to sometimes wake me up in the morning. haven't tried migrane/seizure/muscle relax/nerve meds. very little caffine (only via black tea 1-2x a day). nothing otc has helped.

thanks for the support. sending my best wishes to all of you.

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jocus20
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Hi Diamond your recent story sounds alot like what im going through. Last month i kept getting sick with colds/flus and since then ive been feeling terrible again.

Before that i was making good improvements and felt like i was finally on the right track. Now i feel like im at square one again.

I have also been having bad headaches that are more like constant pressure mostly in my forehead area and between my eyes. My head just feels so full and my ears aches and feel full too.

I suspect that the colds really set me back for some reason but i really have no clue. Nothing changed for me except that i got sick so i guess thats what it is.

Anyways i hope you start feeling better i just wanted to add my story although i dont have any answers i can definately relate. Im 24 too by the way.

Take care,
Joe

--------------------
http://www.myspace.com/jocus20

also check out my videos:

http://www.youtube.com/user/jocus20

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