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not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 6/5/2009 5:51 PM (GMT -6)   
when I was 1st diagnosed with lyme my main symptom was head pain that sent me to the ER. I now get alot of headaches again but this time they seem to be different. I either get stabbing pain, mainly in the temple area.and I get alot of head pressure in the back of my head. My question is what do you think is causing this? (lyme or one of the co infections)

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 6/5/2009 5:57 PM (GMT -6)   
it could be all of the above---they all can cause horrible headaches. blessings
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline 9/08
modified cowden protocol 3/09
Outstare The Darkness--The Light Will Come!


not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 6/5/2009 7:18 PM (GMT -6)   
Thankyou. I kind of thought that. Also when I get the bad head pressure, It makes me feel faint and like Iam going to pass out. Its such a wierd feeling.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/5/2009 11:37 PM (GMT -6)   
my nuero gave me Gabapntion for this. you may want to check into it. he does help me a lot. my last headache lasted for over a 1yr
   RD
                                                                                                                 
 
still looking for answers
 


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 6/6/2009 4:35 AM (GMT -6)   
I hear you guys! And I "feel" your pain.

Outside Lyme and co-infections, the stabbing pain are migraines, the tightness is called a tension headache brought on by stress of course.

All this courtesy of google.

Tis the season for sinuses on the East Coast -- with the rain and what not.
Bit June 08.


not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 6/6/2009 6:14 AM (GMT -6)   
Thanks RD I will look into that. Wow a headache for a year I dont know what I would do if I had to deal with that. Is Gabapntion expensive? I have no health insurance.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 6/6/2009 7:41 AM (GMT -6)   
Because I have dizziness when I turn my head, I got in to see an ENT.

My head seems to hurt a lot lately.

It's a high pressure feeling too. It was SO bad the other day, I nearly went to the ER, but what would that have done? So, I'm waiting it out and hoping for the best.

Reallly feel out of it.

I woke up to eye ache. My head will hurt when I couch, move, or sing. and laugh.

***?

Sorry, I just need to vent some. I'm always scared of symptoms since I tested CDC positive for LD. I'm done with treatment, but blame every subsequent thing on Lyme. Maybe I quit treatment too soon, but with all this, I felt the antibiotics with no end in sight were unusual.

They don't cure that's for sure. Just keep it at bay...
Bit June 08.


not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 6/6/2009 12:09 PM (GMT -6)   
Its ok to vent. I too get scared at some of the symptoms I get. So you are not on any type of treatment at all? I often feel like stopping my meds to, but then i dont. It is just so frusterating. One day maybe I will feel like my old self.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/6/2009 1:20 PM (GMT -6)   
not again, the gabapntion 300mg is $103. for 90 pills at wal-mart, and not on the $4. plan :(
you may want to check into med coveage from the county your in. since i havent been able to work in 3 yrs now, i have nothing. i got into the county program and they cover up to so much med coveage a yr. and i get 3 screps a month free. so you know the gab is 1 i have dont there . i always check with wal-mart to see whats priced what.
   RD
                                                                                                                 
 
still looking for answers
 


not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 6/6/2009 2:02 PM (GMT -6)   
Ok thanks. Right now Iam only on Tetracycline for treatment because it is cheep. Iwill look into med coverage. I never thought of that. Sorry you have not been able to work. Is that cause of the lyme?

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/6/2009 11:03 PM (GMT -6)   
yes i belive it is.but i just found out i have lyme in april. it sure did explan a lot to me.
Good luck, hope your headache eases up soon
   RD
                                                                                                                 
 
still looking for answers
 


chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 6/7/2009 1:16 PM (GMT -6)   
Head Pain is my number 1 symptom. I've been asking these questions on this board for a year now. I've essentially had a headache for 1.5 years (since I was infected with Lyme). At the onset (I went to the ER), I thought I had a brain tumor. Now I live with head pain that seems to be slowly but surely becoming less painful. Or maybe my body is just used to the feeling and its not going away. Its terrible to think about the fact that I've had a headache for over a year. I can only look forward in order to have a positive feeling. Why can't we find a drug that crosses the blood brain barrier that attacks this bacteria and kills it? Or maybe I did kill it with all the antibiotics and candida yeast is what is causing my head pain...

Anyone who had head pain with Lyme and is now better that is reading this thread? We would love to hear your insight and inspiration...

Chief

ps everyone: I promise I'll come back to the message boards and help everyone when I get better.....

not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 6/7/2009 1:43 PM (GMT -6)   
chief, sorry to hear you deal with this as well. There has to be a med that will help. I for one know my med is not strong enough. It gets rid of most of my joint pain but as for my head and brain it does not help. Or has not yet. It is awful that you have had a headache for over a year. Mine come and go, there are some days I dont have one at all, and other days I dont even want to get out of bed. I hope you are better soon.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/7/2009 1:56 PM (GMT -6)   
I hardly EVER get headaches -- knock on wood!  do you think this means I might not have Lyme?  My whole head (and neck) feel sore. (jaw, mouth, gums, cheeks, cheek bones, eye area, forhead, etc)  I don't know a better word to describe it. It is a soreness, like the kind that almost feels good when you press on it,  or groan  (like you do w/ the flu, when nobody is around....)
 
I'm very sorry, you guys.  I've had some whoppers in my life, enough to make me sorry for you -- but thank goodness, not many.
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/7/2009 2:02 PM (GMT -6)   
sorry -- I would like to add this just in case it's of any help to anyone. Since my early 20's, w/ the exception of only a few, the only headaches I've gotten have been from low blood sugar. I am not super hypoglycemic, but my blood sugar did drop below 50 w/ a 5 hr test and the headache I got from that was from HECK. It is very rare that my blood sugar goes low enough to cause a headache, because I have to address it well before it gets that bad. But on the occasions it has gotten that low, I've gotten a headache that nothing touches, except making it thru til the next day.

I believe Lyme can cause hypoglycemia, so maybe that should be considered for some of you?


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/7/2009 5:21 PM (GMT -6)   
I had horrible nonstep incapacitating heads headaches as my main symptom of Lyme when I relapsed last august. I was diagnosed with Babeasioisis... Mepron and Azithromycin helped but not completely but high doses of homeopathic Nux Vomica (3G , from Germany). I am headache free for 6 months!

pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/7/2009 5:21 PM (GMT -6)   
I had horrible nonstep incapacitating heads headaches as my main symptom of Lyme when I relapsed last august. I was diagnosed with Babeasioisis... Mepron and Azithromycin helped but not completely but high doses of homeopathic Nux Vomica (3G , from Germany). I am headache free for 6 months!

not again
Regular Member


Date Joined Jun 2008
Total Posts : 264
   Posted 6/7/2009 5:55 PM (GMT -6)   
+lyme, I dont think everyone gets bad headaches. So I would not say you dont have lyme. They are just one of the many sympyoms. What symptoms do you have?
pcpc, Its good to hear that you have been headache free for 6 months. So I guess there is hope!! Can you tell me more about Nux Vomica. Not sure what that is. is it expensive? i cant afford mepron.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/7/2009 10:50 PM (GMT -6)   
I started with migrans about 8 yrs ago, from out of nowere it was new to me. i was someone who hardly ever had a headache then wam i had a biggy, so i learned how to deal with em. on the onset of 1 i would pop 3 extra strengh tynole, and place a ICE cold rag on my face and behind my neck, lay down for about an hour and it would go away. this happened on an off for a few yrs. then about 4 yrs ago i got 1 i couldnt get rid of lasted for a week. i missed work couldnt eat, shoot i couldnt get out of bed for days. then it was gone fast as it showed up. so i go about my life and then almost 3 yrs ago i get 1. this is the big daddy of all migrans. woke me up at 4am. i was holding my head rocking in bed tears running and knew i was going to die. i really thought i had a brain anrurisma (sry cant spell it). this was the start of my daily living just not as intence.
if i am glad for anything about finding i have Lyme it is the med the nuero gave me for migrans for me it works. now all i have is a dull throb. witch i will gladly take over thinking my head is about to explode at any moment.
now i do not know if its from lyme disease or not. i also had a MRI that showed lesions in my brain. from lyme or migrains and or cancer, is what the report read.
my luck its all of them ..lol

i know i wouldnt wish them on anyone. so count yourself exremly lucky +lyme that you do not have them. and i pray you never do.
   RD
                                                                                                                 
 
still looking for answers
 


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/8/2009 7:24 AM (GMT -6)   
RD, Did they mention MS as a possible diagnosis. With the lesions I am surprised they didn't as lesions from LD can be indistingishable from MS. What are they doing to rule out cancer? That's sounds scary. KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/8/2009 7:27 AM (GMT -6)   
I used to get migraines when I was in my early 20's.  The doctors thinks I was infected around that time from my symptoms ( I didn't know anything about LD at the time, alot of the things I had going on might have made more sense if I had).  I got a Rx for something that seemed to help the pain, but had it's own side effects so I didn't like to take it.
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/8/2009 12:24 PM (GMT -6)   
KO, after running the lyme test with a positive this seemed to be the cause, the ID sent my to a nuero to rule in or out MS, nuero said he didnt belive i had MS. as for the cancer i have had numarius blood test done. so it was never brought up. guess i passed.and yes i was scared witless and still am really. cancer you have a chance to get well. lyme i am finding i cant even get treatment with, so to me that means no chance to get well. what i call a catch 22. danged if you do and danged if you dont
   RD
                                                                                                                 
 
still looking for answers
 


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/8/2009 1:12 PM (GMT -6)   
RD, I've read that some people with brain lesions from LD once treated with Abx will have their lesions disappear (something I don't think you usually see in MS).  If you do have another MRI done let us know the results, it would be interesting to see if yours improve with treatment.
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/8/2009 1:15 PM (GMT -6)   
that would be great if i was getting treatment, bo so far i'm just running into walls, the Dr. here are not doing anything for me. other then sending me from 1 Dr to another, and each one says you test for new infiction but thats all they do. no meds for lyme at all.. grrrrrrrr
   RD
                                                                                                                 
 
still looking for answers
 


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 6/8/2009 1:46 PM (GMT -6)   
Dear RottenDog,

If you have an MRI done, get a copy of the results. You may want someone to review them or you may want to compare them to new results down the road to see if theire's a change.

Claritin kind of helps as does sleep.

I get a dull pressure feeling around my head and when I turn it. I can also be whoozy and feel like my car is still in motion even when it's not. I will be checked by and ENT for the heck of it. Usually, this hospital I go to doesn't wince or bat an eye when I say the words "Lyme Disease". As you know, no one knows anything about this disease -- but at least they don't laugh and encourage me to get help.

Amazing to say that these days. The thing to know is it's the family doctors who usually don't want to be LLMDs.

Not on any ABX -- but I probably should be. It's good for me to break from them to see how I'm doing. Am I supposed to be on them for the rest of my life? Are you guys planning on being on them forever?

Curious...
Bit June 08.

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