This is topic Reaching Out To Everyone... in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/86299

---

Posted by Michele (Member # 13669) on :
 
Back in August I posted asking for advice regarding an upcoming appt with my llmd and the fact that I hadn't quite followed my protocol. I received some good advice and thought I would follow up and reach out for yet some more support.

Most of my family and co-workers are tired of hearing about LD and how I feel (even though I try my best not to complain).

I've never really posted my story (I guess I thought noone would really want to listen). But, maybe if I let you all in I'd feel a sense of belonging.

So here goes...

My journey with LD began September 8, 2007 when my family (me, my husband and two kids)were attending a family reunion in TN. We spent a total of 6 hours outside at the picnic! I sprayed everyone with Off upon arrving! On the way home (a 3 hour drive) on of my relatives called to tell me she and a couple of others found several ticks on them and to check everyone upon arriving home. I checked everyone and did not find any. Everyone changed into their pjs and wet to bed. Needless to say....I DIDN'T HAVE ANYONE CHECK ME and I fell asleep with the same clothes on. So....I have myself to blame for the events that would follow and for allowing this to happen. If only I had checked myself!

I found a tick on me on 9/10/09 (2 days after the reunion) after a hot shower. There was a red area on my chest above one of my breast and was itchy.

I couldn't remove it due to the location so I asked my husband to help. He tried a couple of times and told me it was a mole. I got a magnifying glass and said "see that mole has legs!" He tired again and got it. It was the tiniest tick I'd ever seen. I placed it in a baggie for some reason.

I went about my life and 10 days later on 9/20/07 the spot was itching like crazy . I went to look at it and saw a large circular bullseye rash. I looked it up online and LD came up everywhere.

I went to my doctor the following morning (9/21/07). He measured the rash and documented it and put me on a 14 day round of Doxy. He said it was only pre-cautionary and that it probably wasn't LD. I was relieved and went on my way with script.

I took Doxy as prescribed for 14 days. I felt okay but once off the Doxy felt worse so I went back to doctor and he put me on penicillin. Penicillin did not help at all so he put me on Doxy again.

Went back again on 10/16/07 feeling like I had the flu and was given Prednisone.

Went back again on 10/222/07...More Doxy.

Went back on 10/23/07 feeling extremely weak, painful muscles, headache, dizzy, more flu-like symptoms x 10, crying uncontrollably. Doctor admitted me to the hospital. They ran every test under the sun including a spinal tap. All came back negative.

I was discharged on 10/25/07.

Re-admitted 10/28/08 with a spinal tap headache.

Remained in bed for 7 days until headache subsided.

After that I saw another doctor locally who believed I had a tick borne illness and treated me with 30 days of Doxy and several steroid shots/dose packs.

After many physician visits (including a infectious disease specilist who diagnosed me with CFS and wanted to put me on Ridalin) a co-worker recommended I see the LD physician her husband was seeing.

I made the call and had my first appt with him on 1/30/08. He felt without a doubt that I had a tick borne illness and told me he thought he could help me. I left with much information and my scripts.

I went back home and started my meds...long story short for the past 2 years I've been on and off meds but haven't been able to stay on the regimen prescribed by llmd due to other issued popping up (gut and bladder).

To complicate things I have always had an issue with taking medication due to my mother ending her life at the age of 25 via pills (I was 5).
 

---

Posted by DeniseNM (Member # 11182) on :
 
It always helps to share, and to know you're not alone.

I've been sick for at least 20+ years with Lyme, only we didn't suspect until 2 years ago, and it got confirmed this summer.

I'm having a heck of a time getting going on the protocol, too, due to having stomach issues, too. It seems like every time I get going on something, I have to get my gall bladder out, I get a stomach flu or have some horrid reaction.

It seems like I'm getting nowhere and no better, no matter how hard I try.

I called my dad crying one of the down times, and he, being a stoic, older generation Norweigian, told me very gently, "Honey, I guess you'll just have to buck up."

That was his way of telling me, in his very own way, how much he loved me, and wished he could take it all away and make it better. It was one of the sweetest things he's ever said to me.

They (friends and family) don't always understand this whole thing. I sometimes feel like a broken record, talking about Lyme, etc., so I understand not wanting to go on about it.

Anyway, I don't know if this rambling helps you at all, but you're not alone!!!!!
 

---

Posted by Robin123 (Member # 9197) on :
 
Couple things - I'm sorry the doctors gave you the run-around. This is what we're all trying to address right now, is the medical response to these illnesses.

I now use TKO Orange, also known as Orange Guard in stores, as a tick repellent. It's an essential oil from oranges, is nontoxic to us, biodegradable, and deters and kills bugs, including ticks.

If we use the TKO Orange concentrate, we can put a few drops in a spray bottle and fill up with water. If we use the Orange Guard sold in stores, I think it's 1:6 parts product to water.

It can be sprayed on our clothing, in the home, the yard, where we picnic, camping areas and camping gear, and lightly misted on dogs and cats.

Then to also figure out what we want to put on our skin. I still think essential oils are a good way to go.

About your mom - I'm very sorry you had to go through that loss. Just keep in mind that what she did with pills and what our purposes are in taking them are two different ones. Our purpose is to help heal.

Perhaps it would be helpful to say that difference to yourself outloud each time you take abx or other pills to treat the Lyme, that this/these pills are for healing.
 

---

Posted by MY3BOYS (Member # 17830) on :
 
just wanted to stop by and say...we are all here, and seems like most of us have had run around with Dr, hard time and finally getting a dx only to learn what that really means..

we have been there, and do understand.

as for you mom- i cant imagine how hard that has to be for you. The thought of that is very heartbreaking to hear (((( hugs))))))))))

however- for you own sake, pls do NOT compare yourself to that situation.

i know , you know- that was done in a different manner than being sick with an INFECTION you are trying to get rid of. mind doesn not always over ride the heart thought, does it??

with those emotions in play, and the GI problems with treatment, have you tried to talk to a counsoler or therapist for some help with this struggle, right now ??

if not, i think may help you. somehtimes in situations that overwhelm you like this- having a sounding board and un-biased opinion may help you and give you the guidence and support u need right now., such a terrible ordeal for a child to experience and now haunting you when you are faced with needing to treat a medical condition..

you have an infection in you body, reaking havoc and will until antibiotics are able to kill off enough and your immune system can keep in check..your situation is real, is valid.

best wishes.
 

---

Posted by bettyg (Member # 6147) on :
 
michele, thx for sharing your lyme story with us all.

my belated sympathies on losing your mom at such an age to suicide and what it has done to you mentally.

perhaps you might have a friend/relative who is a psychologist/psychiatrist that could work with you to OVERCOME this deep memory and learning how to deal with it at this time in your life.

hang in there; so glad your dad was supportive in his norwegian way; my late dad was a stubborn norwegian who could never apologize and say he was sorry.
 

---

Posted by LymedOut (Member # 22351) on :
 
Michele,

I'm so sorry about what you've been through with your mom. I hope that you can one day find peace.

This is just a suggestion but sometimes doctors use IV antibiotics when patients have stomach problems. I'm not sure if you want to go that far yet, but it's something to keep in mind.
 

---

Posted by Veromia (Member # 22031) on :
 
Hi hunny,

I am very touched by your story. You must have finished writing and cried because of the abruptness of the ending.

Not sure but it seemed to be an emotional point. I may not be exactly knowing how you feel but my mother is in a live form of a substance abuse haze that took her away from my sister and I at a young age 7yrs for me and 4 yrs for my sister.

She is gone in this haze and we rarely speak. SO i know what it like to be wary. And project those actions on yourself.

You are a mother who would never allow yourself to abandon your children. I can feel that from you. So please stop seeing yourself as her..

You are not your mother. Who loved you so very much that she may have believed she was not good enough for the precious little person she loved so much.

Clearly she wasnt herself. Something destroyed her self worth. She is relieved of that now and her life experiences were to much for her delicate soul to bear .

I have realized that in my mother.

I believe that there are many people out there dealing with tick borne diseases, or perhaps contracted sexually, who are treated as pshcycotic . And they are actually suffering from a neurological infection.

I believe this in my mother and I am incourageing her to persue testing.

I really believe this theory.


And I am sorry to you about the friction you recieve from people around you. It is nothing but people believing we are hypochondriacs.

And you know I really believe my mother has tick borne infections, and i also for years blamed all of her crazieness on lazyness and addiction on herself and the choices she decided to make. Now I believe she is self medicating what she knows nothing about.

Also blaming herself for what she has not fought to overcome..

Yet facing a medical community which would never give her a chance.

I used to get so mad at her being lazy,, now I see i was in a way like the people who I blame for not being there for me.

An eternal misunderstanding we all have for each other ,

Further confused by these parasites.

Sorry if that was too personal.

We are here for you with stories like you. Pm me anytime for support.

If something just happened any day .... you can pm me and i will listen and try to help. or just listen..

Healing your way--Veronica.
 

---

Posted by Topaz (Member # 20216) on :
 
I just finished reading your other post and want to say that I'll be your "cheerleader", as I'm sure many others on here will. We know and understand what you are going through.


I'm so very sorry about your mom. *hugs*


Like others have said, you have an illness that NEEDS to be treated in order for you to be well.


Try to convince yourself that these meds are necessary and that they will make you well again.


Then just put your all into it and begin your treatment regime.


I had a difficult time accepting that I might be on long term antibiotics as well as I've always been very much anti-antibiotics and I have to really psyche myself up to take them each day.


But I've come to realize that I have an illness that is beyond my self treating and it's not going to go away if I ignore it.


I need to put my faith in the experts(my llmd), and then follow his recommendations, which is what I am doing. It's out of my hands.


Anyway, just know that you are not alone and we'll be here cheering you on during this healing journey of yours.
 

---

Posted by Pinelady (Member # 18524) on :
 
Bowel gut issues were most likely due to yeast, or the borrelia themselves. Many of us have bowel

issues and have found ways to control. I understand you feel alone. No one can understand

this disease unless they have had it. I suggest the movie UOS for them, not you. You already know

what it can do to you. You also know it will be a long road because of the lack of aggressive

treatment in the beginning. There are many who are rallying for a change to the guidelines. It

will take many and you can help if you get yourself well. You can get well and if something

doesn't work there are many here who have ideas to find out why. I am glad you found them.
 

---

Posted by coltman (Member # 21272) on :
 

quote:

---

After that I saw another doctor locally who believed I had a tick borne illness and treated me with 30 days of Doxy and several steroid shots/dose packs.

---