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Posted 4/15/2016 10:47 PM (GMT 0)
If you could go back and give yourself advise when you were first diagnosed what would you say to yourself?

I'm trying to determine what route to take as far as treatment goes and would love any advice I could get. I've posted my story before but basically I've been battling debilitating symptoms for about 2 years. I just found out today that I'm Igenex and CDC positive. While I'm glad to finally have a diagnosis I'm pretty upset about it. On top of all this I believe my husband has Lyme as well. He and I share so many of the same symptoms :(.

My main reason for this post is to get some advice from people who have walked or are walking this path. What do you wish you would have done differently in your treatment or what are you happy that you have done?
Posted 4/16/2016 12:23 AM (GMT 0)
First, I'm sorry about your diagnosis--you are about ready to embark on a whole new journey in life. The gift in those tests is that they are definitive. MOST people don't have that. And I'm sorry about your husband - that was surely a blow. But another possible gift is that it usually takes another lymee to truly understand what we're going through. And you two will hopefully provide a good and necessary support system for ea other.

Great question...

I wish I had listened to my intuition and when MDs declared over and over for 16 years that the lyme & co was CFS, fibro, stress-induced, or just plain in my head... that I would have fired them on the spot for being lazy and willfully ignorant and not living up to their hippocratic oath and playing roulette with my life.

/rant over. ;)

But I also wish I had done a few very important and specific things--in this order:

#1 I wish SO MUCH that I had slowed down, and when these sx and my life got turned upside down, and MDs failed me, that I had slowed down and allowed myself to be ill

#2 Slowing down would have allowed me to do more of my own research, which I ended up doing 16 yrs later, which led to a suspicion of lyme and me finding an LLMD

#3 I tried working full-time during my first year of treatment and then tried working part-time during my second year of treatment and it was a disaster. My LLMD told me I could't manage both treatment and work but I tried anyway (I don't have a spouse to support me and I was afraid to allow my career to slide, and I was also in denial about how sick I really was and how hard the treatment was going to be). Had I listened to her, I'd be halfway done with treatment by now.

#4 I wish I had focused more on the bart - I've had horrible GI issues (due to bart in the GI) that seem to have disappeared w/ my first dose of vanco IV (2 years into treatment)... if I had started here, my lyme tx would have been a lot easier. This is tricky, though, because my sx and my tests suggest that lyme was the dominant infection. And I was having trouble with both lyme and bart herbs so we slowed it down but the bart continued to cause problems.

#5 I wish that I had done a better job at cataloguing my symptoms and reactions to the protocol. I did "OK" but it wasn't consistent--I was having serious cognitive problems which disrupted my ability to keep track of everything. Not sure what the answer is to that.

-p

Post Edited (Pirouette) : 4/15/2016 6:26:34 PM (GMT-6)

Posted 4/16/2016 12:45 AM (GMT 0)
I wish I had done the Igenex sooner. I did the standard government Lyme test in April, 2014...and a month later I still didn't have the results...I waited until the end of June to do the Igenex test. I wish I had done the Igenex test in April. I would be two months further ahead now.


I wish that i hadn't treated Lyme with antibiotics for 9 1/2 months...I wish I had switched to Bartonella at 5 or 6 months in. That may have warded off having to stop treatment for 2 1/2 months for my liver enzymes to go back to range. As, it was the last few months of lyme treatment that caused them to rise...but I seemed to plateau symptom wise.
So, I would now be another 6 months further ahead.
I was too 'shy' to approach my LLND about switching over to bart when I felt I should.

So, those to missteps cost me a total of 8 months. I would be where I'm at now last August - still in 2015 - looking at Babesia treatment (instead of here in 2016)....
Posted 4/16/2016 2:17 AM (GMT 0)
I wish I had trusted my gut. I knew I had Lyme years ago. I went to a LLMD practice, saw the DO there and was treated for "adrenal fatigue". I really didn't want it to be Lyme so I went along with her diagnosis. I didn't know about Igenex back then...She should have tested me! I deferred to her authority (I've done that many times in my life, to my detriment). I finally stopped seeing her after several months with no improvement.

After that I had two Elisa tests that were negative before finally getting a CDC positive ELISA/WB.
I could have saved myself a lot of pain and suffering if I were diagnosed earlier. I'd probably still have my gallbladder!

Although...If I had been diagnosed back then they would have put me on ABX.
I'm doing Buhner's protocol now and I'm feeling better...it's working. Antibiotics don't work for everyone and they do a number on the body. Buhner feels right for me. (And Rife/biofeedback. And energy work. And Osteopathy)

I'm actually okay where I am right now...definitely improving.
Posted 4/16/2016 4:02 AM (GMT 0)
Pirouette- The first doctor I went to tried to tell me I was just having anxiety. He just threw medicine at me that I refused to take. I knew that it was much more than anxiety. Yes I was having what I thought was panic attacks but I lived in a constant dream like state with terrible brain fog. (It has lifted some but I still have bouts of it). I then went to a natural dr that told me I had Candida and adrenal fatigue but I still felt like there was more to it. Recently I was diagnosed with hypothyroidism. Again, I still felt like there was something going on so I insisted on Lyme's testing. I guess I new in my gut there was more to unfold with each diagnosis.

I have already had to quit my job last October because I physically and mentally couldn't do it. I was a teacher. My stress level is as minimal as I can get it now. I have three daughters and a home to take care of but no other responsibilities. I have to work on allowing myself to be ill. That's a hard one for me.

I feel like a lot of my symptoms point to Bart. I will have to do my research on that. I'm trying to make the decision on how to treat. Do I want to go the antibiotic or herb route? That I don't know yet.

Thank you for the advice. I will have to start recording my symptoms. That is something I haven't done :(. I deal with a lot of cognitive symptoms too.

Girlie- I too feel like I have wasted a lot of time. I have known in my gut since October that I have Lyme. I first seeked Igenex testing in December but my regular dr ordered the PCR. I guess I was in so much of a fog that I really wasn't thinking about what test should be ordered. Then finally about 5 weeks ago I worked up the energy to ask my dr to order the western blot through Igenex. I went through a time that I honestly couldn't even make phone calls. It was just too much for me. Finally once he ordered the western blot my dr's nurse faxed the request & for some reason it didn't go through but they didn't know! So that delayed another week or so :(

Kathie- Did you try antibiotics at all? I'm trying to decide what route to take with treatment. I really don't know what to do!
Posted 4/16/2016 4:25 AM (GMT 0)
Faith -

Your journey sounds a lot like mine. Initially, MDs blamed sx on stress and were clueless about how to properly test thyroid so that went undiagnosed for 10 yrs. And everything else was blamed on stress and psychosomatic "issues". Granted, I worked crazy hours and traveled a lot so it made sense that it was all my fault...

Then life got unlivable and I could no longer eat w/out excruciating pain. I wised up and found a naturopath who helped diagnose (some of) my GI issues, neurotransmitter imbalances and thyroid problems and was really great and caring. But I don't think lyme & co ever crossed her mind. After spending $20k with her my thyroid was better, but we could never get neurotransmitters balanced (I now know I have DNA mutations causing issues) and I wasn't much better off. I moved away so that helped end that relationship. After I found out I had lyme & co I emailed her to let her know and she never responded. That told me all I needed to know (and suspected) about her.

I can't imagine where I'd be today if I didn't take matters into my own hands. I already had a 60-hr/wk full-time job so why did I also have to also play health care professional and researcher? On the other hand, if ANYTHING good is to come of this, it's that I'll never take my health for granted ever again, and I'll never trust my health with someone else. I learned how to research and find answers and how to be my own advocate--invaluable.

I think your biggest challenge - and others will probably agree - is deciding what protocol to implement. Finding a good LLMD is half the battle and usually, they will have a preference, which will help you make a decision. Sometimes it's abx, or herbs, or sometimes a hybrid. Some people opt to follow the LLMD's lead at least to get started. Some people have switched LLMDs to follow try a new treatment.

Others bravely take on their own herbal treatment and do it very successfully. There are many good resources to support that and a few people on the forum can give good guidance. And some people like me do a hybrid. Some people respond better to herbs or abx and sometimes this also changes over the course of treatment.

Most lymees end up transitioning from one approach to another - maybe even more than once. Our bodies and the treatment and response to the treatment is very dynamic - constantly changing and our treatment needs to also be flexible.

One thing for sure - there is no one-size-fits-all and your treatment needs to be unique for you (which is why it is so important to document your symptoms/reactions along the way since that information is what will inform your treatment decisions).

I'm glad you found the forum - lots of great people here.

-p
Posted 4/16/2016 12:31 PM (GMT 0)
If I could do one thing over, I would have taken Japanese Knotweed the entire time I was on abx. Japanese Knotweed is a potent anti-inflammatory and crosses the blood brain barrier which can "extend the reach" of abx.
Posted 4/16/2016 12:53 PM (GMT 0)
I agree with Pirouette about taking matters into your own hands...especially after conventional medicine has failed so many of us.

I have not taken any antibiotics. The stats on Buhner's protocol were good enough for me...especially after reading about so many antibiotic failures with Lyme treatment. I'm not closed to the idea...I might need to take them at some point. (Even Buhner says they may be necessary)

This fits with my view:

/www.youtube.com/watch?v=Rij1wbH3jNk
Posted 4/16/2016 3:45 PM (GMT 0)
TOTALLY echo cd - in fact I was going to create a whole thread to discuss Japanese Knotweed. I have been taking it for awhile now and it greatly impacts my inflammation, which is so common with our treatments. In fact, I can usually see a change of appx 4-5 lbs on the scale when I'm on it. And I love that it "extends the reach of abx". It is an investment, though and you must take a high quality product. I highly recommend Biopure.

-p
Posted 4/16/2016 3:52 PM (GMT 0)
Thanks! I will have to look into JK. I have a question about inflammation. My dr has tested my c reactive protein and another inflammatory marker (can't remember the name). They were both negative or within range. Does that mean I don't have inflammation or is that something else Lyme is interfering with?
Posted 4/16/2016 4:10 PM (GMT 0)
Hi Faith, I am also recently diagnosed and trying to find the right way. I hope you will be better soon!

Pirouette, why do you think it is absolutely necessary to stop working in order to have successful treatment? Could you please tell me something more about it?
Posted 4/16/2016 4:23 PM (GMT 0)
Looking back..... I should have known more about lyme disease. I never knew that there were nymphs. I have no idea -- I guess I thought they were born big? So very uninformed. I should have gone to the doctor when I got bit and not just shrugged it off as a spider bite.

Then after being diagnosed I should have made my own tinctures. I had no idea that it would be expensive to purchase all of those herbs. Or that I would be on them this long. I shopped around, tried various places and found the least expensive herb that worked for me. My Japanese Knotweed is $30 for a 4 ounce bottle. It works for me but is not on the recommended list of anyone I have seen here. Still it would have been ultimately less expensive if I had of made my own tincture.
Posted 4/16/2016 4:26 PM (GMT 0)
Blueberrymuffin- thank you! I hope the same for you as well.
Posted 4/16/2016 4:31 PM (GMT 0)
PeteZa- I was also uninformed, but I'm from Louisiana and I do not know a single person with Lyme Disease. It wasn't even on my radar when I first became sick. I have a suspicion that my husband had it first because he has had a lot of health problems his entire life. My symptoms didn't start until after a pregnancy, a very stressful time in my life and moving into a home with mold.

Thankfully because of the Internet and forums like this I began to look for my own diagnosis.
Posted 4/16/2016 8:42 PM (GMT 0)

blueberrymuffin said...
Hi Faith, I am also recently diagnosed and trying to find the right way. I hope you will be better soon!
Pirouette, why do you think it is absolutely necessary to stop working in order to have successful treatment? Could you please tell me something more about it?

NO - I don't think everyone needs to quit working and I should have clarified that - I'm sorry. I would suggest it for some people, depending on their profession, illness and/or other circumstance.

However, I think unrealistic work and stress loads is what drives people (many, many women) to function at the tipping point for a very long time as our adrenals keep us in "fight or flight" mode... until something cracks--a death in the family, a huge fight with a spouse, a stressful move of house/home/job, getting laid off, financial problems... whatever trigger that brings our house of cards tumbling down.

And then BOOM we are in full breakdown mode and our immune system gets overpowered by our MULTIPLE infections. You've probably seen medical professionals talk about stress as a condition as damaging as cancer. I think this accounts a lot for the fact that many more people have lyme & co than know it and why some people live asymptomatically and some of us don't and others pretend to. There are certainly other factors involved in why some people get sick and some don't this is a big driver--not just for lyme & co but many other serious illnesses.

I admit I'm on the extreme end, though. I loved what I did and I was in a very competitive environment and challenging job so I worked roughly 70-80 hr wks for literally 15+ yrs and I had to travel weekly across country for business and moved 4 times to 3 different states. Unfortunately in my profession, 50 hrs is the minimal work week and I also didn't have a choice in the amount I traveled, and part-time is not an option.

So for me, resigning was my only option and I was forced to do it because I got so sick in 2013--it was not something I chose. But I'm still grateful that I did quit. I still tried consulting, which enabled me to work in spurts but this amounted to very little work and income in 2015 AND I could still barely keep up, it was very stressful.

Ironically, even after stopping work it still took 2 years--2 YEARS--for my body to de-stress, for my adrenals to repair and replenish, for my neurotransmitters and hormones to rebalance (somewhat--they're still a little imbalanced) and for my GI to heal somewhat. Only then was I able to start the lyme & co treatment.

Then came last October and I was spiraling downward very quickly because I started doing too much again. I was trying to wrap up a few final consulting gigs and also trying to ramp up treatment and I crashed, hard. I finally regained some function in January and had a heart-to-heart w/ my LLMD and I knew it was either treatment+health or work. I finally quit everything and now fully invested in treatment. Looking back, I made multiple mistakes not doing this 2 yrs ago and I have set my treatment, healing and life back an additional 2 more years because of those mistakes... a very hard lesson learned!

-p
Posted 4/16/2016 9:41 PM (GMT 0)
Dear Pirouette, thank you so much for the explanation. I am so sorry to hear that you had to go through all this. You are such a kind person, I hope you will be better soon.
Posted 4/16/2016 10:11 PM (GMT 0)
Thanks bbm! I wish the best for you as well.

-p
Posted 4/16/2016 11:14 PM (GMT 0)
Faith1212 I am in the same boat. I knew no one with lyme. I had absolutely no information. My doc said I had a sinus infection and I had had enough of those that I knew he wasn't right. But I was so brain foggy that I did not argue. I took his pills and went right to the internet searching to see what it might be that I had. It was Horowitz's questionnaire that really was an eye opener for me.
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