lyme my entire life...just found out 2 months ago

It's possible I've been born with lyme. My mother had all the symptoms of it. I've wondered all my life what was wrong with me. I have around 176 symptoms from the master symptoms list for lyme...plus some stuff that's not listed. I went from doc to doc and drove my ex husband nuts. I live in canada so i guess thats why i was never diagnosed with lyme until 2 months back from an LLND. I was told that i have bb as well as KPU. My doc put me on a detox protocal and then antibiotics (Tinidazole ).

Even though my doc is 99% sure i have this...he wants me to have a test done in the States Soon. There is no doubt in my mind that i have this disease. My feet and hands ache so bad. I have trouble walking. I have alopecia since 15 yrs old..with painful scalp just before my hair would start to fall out during episodes. Chronic Fatigue like forever! Anxiety and inner tention that is beyond words. This Herxting thing makes sense to me the more i learn about it. I'm worried for my daughter now !

My question for now is...has anyone here experience dizziness with nausia when napping? I have this all my life. It only happens during a nap. It wakes me up it gets so severe. I don't experience this during nighttime sleep at all.

Hi Squash the pumpkin!

Where in Canada are you? I am from BC and as you know there aren't any LLMD's practicing in Canada.
I have a LLND here in BC who is quite good.

Which particular test does your Dr want you to have? Is it the Western Blot from Igenex?

Thank you Revive

Im seeing a LLND he is amazing! There is so much info on this site its hard to keep up. I'm even dizzy to read.

Hi Girl

I Live in the mainland BC. I am astonished that i finally have been diagnosed with something that makes sense!!! I don’t know what test my LLND has instore for me until this Sat when i see him again. I'm soooooo afraid that he won't send my samples to the right test since I've heard so much about how certain tests are so unreliable! I heard the Western Blot is as well.

Hi Simela

I'm so glad someone undestands the correlation between KPU and Lyme! My mother is deceased as of 5 yrs ago from Breast cancer...but she suffered all her life with Bi polar and every symptom u can think of that goes with KPU and Lyme! Her anger was beyond words!!! She couldn't leave the house or she would get lost plus she became agoraphobic And a full time drinker. I'm very sad that i can't go back in time and know what i know now to save her. But now i must try and focus on my daughter which also genetically has KPU and myself.

Welcome to the forum Squash_the_pumpkin! I'm glad you finally got a diagnoses after having problems for so many years. I'm also sorry that you learned too late to help your mother. I lost mine almost 2 year ago and wonder if she had it too.

If your daughter has it, she has youth on her side. Hopefully she doesn't, but if she does, then you'll learn a lot here so you can help her through it too. One of my daughters has it and likely got it from me. She has been ill most of her life.

Keep us posted on how things go with you and your daughter.

Ty Garden P...

Sorry to hear about ur mom as well.

My daughter was muscle tested but only KPU showed up. But she shows signs of lyme. What kind of symptoms has ur daughter showed in the beginning when you were first suspicious?

Hi Sayyadina..

Sorry to hear about ur mom too. Ty about the bart info!!! I'm going to ask my doc about that treatment as well and see what his thoughts r on that. Why did ur lyme come back?

Looking back, I think the first sign was headaches. We had her eyes checked and found out she needed to do some eye exercises since her eyes turned inward too much, if that makes sense. After fixing that, she still had headaches, but much milder. She was checked again and they were still in place, so I didn't know why she was still having headaches. Then when she was around 8 or nine, I noticed she was more tired than she should be, after being such an active little girl. We took her to a physical therapist and when they had get get on a treadmill to warm up her muscles and she was having a hard time keeping up the pace, even thought it wasn't very fast. I was concerned, but just thought it was hormonal changes and that she was exaggerating. She continued to be fatigued, but docs couldn't figure out why and tried different things, which did help here and there. We use NDs. If we had taken her to an MD, they would've had her on antidepressants and heaven only knows what else. So there were odds and ends of little things going on, which we thought would go away once she was through puberty.

We ended up switching to a doctor who just happened to be a LLMD/ND, so that's when we found out about Lyme. It was such a relief to find out what was wrong with her and good for her to know too, since her life was just passing by for several years, while her former friend moved ahead with their lives and her sister too, who will graduate from college this year. I was diagnosed a year after her, but I didn't think I had it since I wasn't feeling like she was.

Most of our brain fog/cognitive/executive function problems were caused by babesia. CSA (a combination tincture of cryptolepis/sida acuta/alchornea) has improved these symptoms enormously; red root as well which improves circulation by decreasing rouleaux of red blood cells caused by bart/babs. Both of the herbs are recommended by the herbalist Stephen Buhner.

http://www.buhnerhealinglyme.com/

http://www.redrootmountain.com/red-root-balance-the-body-by-way-of-the-spleen/66

http://bearmedicineherbals.com/ceanothus.html

We are from the Niagara area.

Hi Squash!!
You are getting some really great information here, so I just wanted to stop by and say 'Welcome to our community!'

For someone with a long standing Lyme infection, usually the doc will want to do an abx (antibiotics) challenge where the patient takes abx or abx type herbs for 6 - 8 weeks then off them for 3 weeks then do the test.

Actually, the thought is that the abx will lower the bacterial load, and in a way "prime" the immune system to recognize the bacteria and attack it like it should.

Thank you Traveler;

Ok...so i feel a bit better now that you say the abx could kill off enough bacteria so that the immunity can boost! I can't wait to see my doc this Sat!

T....I will let you all know this Sat as to what my nd has instore for me next. Ty