New Daily Persistent Headache Support Group

Make sure you do not have Lyme disease or co-infections.

I joined MDJ to learn about NDPH, other Lyme moms here alerted and warned me about Lyme disease. They were RIGHT!!

Sick Daughthter, diagnosis month/with/rx:

Sept - mono, mom stressing her; sent to counseling

Oct - allergy, press pt headache, faking it; allergy meds, go away, see ped neuro

Nov - NDPH, amitriptyline, topiramate

Jan - Lyme disease, Babesia, BLO

Since starting ABX treatment she has been getting better. Because early treatment window missed, outcome uncertain, treatment protocols more difficult.

Do not miss the diagnosis. The consequences are dire and debilitating. You need a recommended LLMD from other Lyme patients who have been through the mill.

Daughter has lost everything she loved doing this year to this disease. The doctors we trusted caused her to miss the early treatment windown, they did not know how do to the diagnosis. Yet we live in an endemic area.

I wanted to warn others as we were warned. I think the other moms here saved my dauther's life. Our regular physcians certainly didn't have a clue.

Take care all!

Hi! My name is Betsy. I am 58 and I am so sorry to learn of another person who is now suffering the awful effects of a missed Lyme's diagnosis. Please know that she is in my thoughts and I send light to her. I was, just before checking the NDPH site, compliling my "evidence and research" to convince my neuro to allow me another month on the IV Rocephin to see if my headpain will break during the 12th-16th week period which is my hope.It is frightening to see how this LYMES has changed life in every imaginable way.

It has now been 18 months of the nonremitting headache beginning at a precise moment like a horrific thunderclap and never leaving for one second--only to add other symptoms month by month in its wake. My GP, like your daughter's, missed the symptoms--ever growing, even as I begged for testing and abx, and then began the unending trail to specialists, LP's, etc.--I'm sure you know exactly....finally receiving a Lyme positive test with a two bands on Western Block (still not recognized by "some".

You are absolutely correct in that one must advocate and find the right doctor--I hope that you have.I have felt fortunate that my neuro was willing to try the IV treatment though she feels that 3 months is all she is willing to do and the headpain hasn't yet broken. She has never treated a Lyme patient so this is completely unknown territory for her and she was going out on a limb for me anyway, I think.She is willing to continue with Doxy in oral form which is still a huge thing. Some believe in the antibiotic path of "low and slow" (meaning low dosages and slow increases over long periods of time as opposed to the aggressive high dosage IV Rocephin, etc.) It's just that I believe the IV treatment is the piece that is necessary to initially strike out the head pain. It did for one other NDPH/Lyme Disease sufferer on our site. Have you seen the documentary, Under Our Skin?

It is very insightful, though sobering.

I am scrambling to find another LLMD to extend the PICC and continue IV treatment as I write. I believe that this nasty bacteria can be "beaten" to death and sooner or later, there will be one of us who gives up and "quits". I refuse to be the one to give up!

I know it sounds like warfare and as I express this, I realize that it actually is. I think that I am a peaceful person, and this is a matter of Life or Death in the manner of Quality and it is worth fighting for--I hope that your path is one of strength and good doctors.

I am searching now to find another good doctor to see me through the break in this headpain and renewal of a life I still remember.

Best to you,

BJM

Betsy-

Are you a mamber of the Lyme board? If not you should join and request a LLMD in your area. We have a list of docs all over the country!

I too suffer from lyme and a constant, severe, everyday, 24/7 headache. I wouldn't wish it on anyone!!!

Join us on the lyme site and we will help you out finding a good lyme doc!

Jenn

Hi Jenn! No, I'm not a member of the Lyme Board but would certainly be willing to become a member. I live in Virginia and we are in one of those states that has fought for the Legislative Bill which was tabled this year to allow physicians to treat Lyme patients with antibiotics past the initial stated period without fear of medical license repercussions, etc. It has been so frustrating.

It has been my true lifeline to find this website, to find Ramilin and the others who post here. Thank you for your entry. I feel that a break may be so close and I find such encouragement and help when my own resolve starts to waiver and I reach yet another dead end or another door that closes and I feel like giving up or giving in to this miserable mess. THANK YOU! I was given the name of one doctor in Maryland. I do not know of one in Virginia who is openly willing to take on IV Antibiotic treatment. I would like to join the Lyme Board. Could you send me the link for that info? I am horrible with the computer but maybe I can find my way.

I appreciate your comment at the end of your entry about spelling and composition....I so understand and find myself appalled at my own descent into incoherence and the indecipherable. (It took me 15 minutes to remember those fancy words and then another 30 minutes to find them in the dictionary and spell them correctly. I have forgotten how to use my spell check on my new laptop!!!!) gotta smile or we'll be completely down the Rabbit Hole with no hope of finding our way out!

I have only a week to get another doc to write a script to keep the picc and then I can hopefully find a Lyme doctor to continue the treatment into a fourth month. I am hoping. I am also going to send my neuro some of the entries so she can read about at least one success story through persistent IV treatment and see if perhaps she will relent and continue.

Thank you so much for posting and then listening, Jenn. I am here also for you and care about your story.

In this together,

Betsy

Here is a link to the Lyme board.

http://www.mdjunction.com/lyme-disease

There are a lot of members over there and it is a very active board so I suspect that someone will be able to point you in the right direction toward finding a doctor who isn't too far away.

Jensen - I'm glad you pursued the Lyme aspect and finally got a diagnosis! I hope that the treatment will help your daughter. Let us know how she progresses.

Betsy - I'm sorry the doctor's missed your diagnosis as well. It's great that you pursued it though. I hope you can get your treatment extended and get some improvement.

Betsy~ I am so glad you found some help in my post!! I think you will be so relieved to have others to talk to on the lyme board.

We are a VERY active board and there is always someone around to answer questions, lend support, or just vent to!! We all know what it's like and can empathize!

I look foward to seeing you there!!

Oh, and thanks for posting the link Mary!!

I hate that so many are getting the dx of lyme, but I am happy that you all are finding your cause. Unfortuantly, neuro's must become educated as lyme can be a neurological based disease, but they simple won't consider it's a bacteria causing headpain, they would rather put stock into vascular dx.

You all know I am constantly preaching about lyme and 24/7 headpain. I'm sorry if you all are tired of me yet, but I don't like knowing people are suffering at the hands of ill-educated doctors.

Ps... I've done almost 14 months of treatment...it's a long slow process, but don't give up. I no longer have 24/7 headpain.