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Posted 2/24/2012 12:25 AM (GMT -5)
Well, today my daughter's only other local doctor that knows anything about Lyme basically told us that it is his way or the highway!!  He makes very valid points and he is very concerned about my daughter's tachycardia.  He is convinced she needs to be on doxy when 1/4 of one tablet (25 mg) put her into the worst Herx I have ever seen.  I was literally afraid to leave her side for 48 hours.  I do understand that is indicative of a huge Lyme bacteria population. 

We have been trying to stick with the Hansa route, but wanted to have him just to keep an eye on her labs and sleep/pain meds.  Obviously, that is not going to work!

Only really wanted to ask for prayers for which treatment direction to go. . .  Between antibiotics/cardiologist and alternative natural treatment.  I know there are pros and cons both ways.  Just need prayers and supernatural wisdom. 

Thank you!

Posted 2/24/2012 5:16 AM (GMT -5)
A 25mg dose of doxy can't kill lyme bacteria and certainly couldn't cause a massive herx. If she did have a severe reaction soon after that small of a dose it was probably an allergic reaction to the medication (the doctor could tell you). There's plenty of different classes of antibiotics that are effective for lyme that are tolerated in people who are allergic to tetracyclines like doxy. Some people feel like that can't tolerate any antibiotics, no matter the class.

Taking natural antibiotics won't necessarily produce a less intense herx once you get on with treatment. The word 'natural' doesn't imply safe; it's simply a different combination of materials that provide the same effect (killing bacteria).
Posted 2/24/2012 7:23 AM (GMT -5)
Hi Treehousemom,

What kind of doctor says it's his way or the highway?  Not a good one in my opinion...   A "good" doctor "should" care about his patient for the well-being of that patient and be open-minded to all therapies... Why do some doctors feel threatened by alternative medicine?  I have no idea..  Is it because they know nothing about them?  Pondering, pondering...

Dr. J. (from Hansa) has sent many of his patients to other doctors for various reasons and that's because he cares about the patient..  Not just "his way"...

Dr. J's protocol takes months or longer depending on what the problems are..  But the patient has to do the work such as heavy detoxing, the right diet, etc.  Taking the botanicals are the easy part, it's the rest of it that's not easy...

Don't know if this helps or not,

Denise

Posted 2/24/2012 12:20 PM (GMT -5)
Most MDs don't mind alternative treatments as long as they are doing no harm or won't conflict with their own treatments you are following. Many of the recommendations that make up something like the Jernigan protocol are completely supported by mainstream medicine: eating better, sleeping better, lowering stress, adding exercise, etc; no one is going to deny any of this as a means to better health. They may roll their eyes if you tell them a doctor diagnosed your diseases by measuring the electrical resistance of your skin, but you'll still be their patient at the end of the day if you choose to be.

When there is a possibly lifethreatening condition then this all changes. Lyme can cause heart block, leading to heart attacks. Serious heart complications from lyme are almost always treated with immediate IV antibiotics in a hospital setting. Obviously I have no idea if your daughter's issues fall into this category, but you don't yet either and it should be investigated.

What sounded to you like "My way or the highway" was the doctor trying to convey the potential threat of the situation and protect himself from a possible malpractice suit should you decide not to follow his recommendations.
Posted 2/24/2012 2:52 PM (GMT -5)
I would run from a doc that told me "My way or the highway" kind of a thing!! The reason I would run and not just walk is because I've already gone through the abx route and it almost killed me...and I don't have any of the serious heart issues that can come with these infections!!

I was on 900 mgs Mino for a full year getting worse and worse until I could no longer carry on a conversation - no matter how simple because of stuttering, couldn't follow written and could barely follow oral instructions, lost all of my short-term memory and a good portion of my long term memory, couldn't follow patterns no matter how simple they were, even began having trouble communicating with my own husband and started having small seizures, among many other things.

I'm not saying this to scare anyone - but if the body doesn't do well on abx when one is infected with these infections, I feel it's best not to push it! A person can always switch to abx at a later date if they felt the need to.

You could also find a Lyme sympathetic doc - one who doesn't necessarily know how to treat it, but is willing to provide the support of pain meds and to refer you to a Cardio doc or whatever you may need.

You will be in my prayers as you make these decisions.
Posted 2/24/2012 9:17 PM (GMT -5)
Thanks so much you all, for your thoughts and opinions. The doctor I am talking about really is trying to protect himself--you are right Spall!! So I don't hold it against him. . . But he IS very intimidating and pretty much had me convinced that she was in horrible shape--this after telling me how much better she looked after the Hansa protocol. . . .

I think tachycardia is pretty common among Lyme patients--is that a safe assumption?! I am not taking that lightly and we have an appt with a cardiologist on Tuesday. I just don't know why a doctor that is supposedly well-versed in Lyme would totally freak out about that!

Traveler--wow. . . So glad for you all to remind me that you CAN get well without antibiotics. . . I know this, but it is my CHILD and I just want to do what is best for her. She could only tolerate amoxicillin, but only got up to 1000mg--her LLMD wanted her up to 4000!!! Thats why we wanted to switch to natural and herbal methods. Are you doing better now??

Deejavu--I agree about Dr. J--we LOVE him and he called today and talked to me for a long time. Reassuring. . ..

Thanks so much for your prayers. . . Gonna give it this w/e. . .

Ya'll are awesome!!! <3
Posted 2/25/2012 9:56 AM (GMT -5)
Hi Jessica!!

Thanks for your response!! We are feeling sooooo much better about staying the path we have begun! I watched your video--you are beautiful and precious, and I know you are making a difference in this world!! Thank you for sharing your story.

Our Dr. Jernigan called me yesterday and really, really reassured me. He reminded me that it IS a process. I really do trust him and believe in what he is doing as I have seen changes in Caity lately. I am a nurse, and I LOVE alternative medicine, so much of it makes more sense than allopathic medicine. I can see this being in my future!!!! :-)

I am sharing a clip of my daughter's Lyme story. She has come a long way and I am very proud of her!!


http://www.youtube.com/watch?v=2Jf5ad-Wwl
Posted 2/25/2012 9:57 AM (GMT -5)
Hi again treehousemom,

I agree with Jessica totally...  You said "we", does that mean you are following Hansa's protocol along with Caity? 

I think in my non-medical opinion that tachycardia can be caused from anxiety alone but I'm not a doctor..  I know when I get anxiety my heart beats faster..

This entire healing process depends on Caity and Caity alone..  It's great to have a Mom like you to support Caity but it's Caity's choice to "want" to do the work if she seriously wants to get better.  You can lead a horse to water but you can't make that horse drink or however that cliche goes...

I read in her blog that emotionally she is bottled up.. That alone is not healthy and perhaps counseling would be a positive step for Caity...  I cried alot and I wish I had someone to vent to when I was sick but I didn't so I vented to a forum I had belonged to.

Also what about Caity going to the Paracelsus Clinic "alone" in Switzerland as Dr. Jernigan trained with Dr. Thomas Rau in Switzerland but at the Paracelsus Clinic they offer emotional healing as well as biological medicine and after reading Caity's blog, I feel Caity most definitely could use some help in that department...  I believe a person stays there for a couple of months, not weeks..  Yes, it's expensive but one can not put a price on good health... 

http://www.drrausway.com/

Has Caity decided to go to Vegas for that MRI that Dr. J. suggested?  

Hang in there okay!  Wishing Caity the best!

Denise

Posted 2/25/2012 9:59 AM (GMT -5)
http://www.youtube.com/watch?v=2Jf5ad-Wwl

Trying again. . .Not sure that last one worked. . . :-)
Posted 2/25/2012 10:12 AM (GMT -5)
Grrrrrr--why won't that link work? I don't want to keep posting and clog up the forum with all of my clumsy attempts!! LOL Anyway, it is on youtube and under Caity Boyd "My Lyme Story."

Deejavu--thanks for your encouragement. Actually, I think that Caity has worked through a ton of the emotional stuff. She just seems so much happier and energetic lately. When her neuro doc here told her to quit all the supplements, she looked at me and said "NO WAY am I quitting all my supplements!!!" She wants to continue on the Hansa protocol as well. She just glows when she goes to that place!! Well, of course, it isn't the place, but the people, the healing, the energetics, etc, etc, etc.

Can you share with me how long it took you to really see much improvement? Caity is definately different, and she feels it too. She is so much more energetic. But she says that she still has a lot of pain, still cannot sleep well at all. I keep feeling like if we could just get her to sleep, her healing would go at a faster pace!

I am proud of her though--she has really stepped up to the plate. She is eating gluten and sugar-free (HUGE for her!!), doing her sauna every other day and her detox baths, and keeping track of her supplements by herself. Of course, I hover, but she is really doing great with it all. We have added in acupuncture, so are curious to see how that affects all this.

LOL--I guess when I say "we" I should say "her." I am so intimately involved in all this process, sometimes I talk like it is both of us!! We are walking through this together. But, yes, I have tested positive for Lyme but I have no symptoms. Hopefully someday we will have enough money left for me to see what a little treatment there at Hansa would do for me!! I eat really healthy, am addicted to my green smoothies and really feel like that keeps me well. . . .

You guys are great--love this forum!! Thank you thank you!!!!
Posted 2/25/2012 11:21 AM (GMT -5)
www.youtube.com/watch?v=2Jf5ad-WwhE

ONE more try. . .

Moderators--you can remove this if it doesn't work!!! Please! LOL

Post Edited By Moderator (Traveler) : 2/25/2012 10:08:49 AM (GMT-7)

Posted 2/25/2012 12:43 PM (GMT -5)
Hi Treehouse!
The only thing that I did in your post was to make the link to you tube a hyper-link. She's a beautiful young lady!! I also noticed that she has a good grasp of what she is dealing with. That's a really good thing!

In my last post, I did not mean to imply that you "need to" go the natural route - I couldn't push that on my children either - and they are all adults! My main purpose was to show that it can be done no matter how long a person may have been infected, or how ill that person may be....sometimes it's actually safer and easier than using abx under those same conditions. *** To ALL - please note, I said sometimes. It's still up to that person, as I believe that in order to heal from these infections, one really must be able to put a lot of trust in the Practitioner that they are using.***

Do you think that Caity would be interested in joining a site for teens that have Lyme? Here is a link -just in case!! www.lymeteens.socialgo.com/

Since I haven't been a teen in over 40 years (LOL!), I haven't joined to check it out, so I don't know how things are handled there. Have you ever wanted a site for support for the care-giving side of Lyme? There's site just for those who live with someone who is fighting Lyme, it's focus is on spouses, but there's still a lot of good info there! Here is a link in case you are interested -www.lymespouse.org/

Of course we still want you to come here!!! We love being able to hear how Caity is doing and as you know, we just love to help others!! smilewinkgrin I just thought that those other sites might help out a bit.

As far as how I'm doing now??? I feel like I've been given a new life to build! turn My healing is slow, but I have regained ground that I truly thought I had lost for good - even after I started seeing some pretty decent improvements the beginning of my treatment. I now have at least part of a life! I get to have some livestock (just dairy goats for now) and be able to take care of them. I had a nice small garden last year, this year I'm going to plant enough so that I will be able to do some canning!!! yeah I even have the energy to keep up with my 2 1/2 yr old grandson for several hours!!!

Hang in there! There is healing for Caity, you just need to find what you and she can work with and one the her body won't reject.
Posted 2/25/2012 12:47 PM (GMT -5)
Jessica - I think part of why you are getting better is that you are indeed battling it on your own - this Lyme takes personal, internal determination and perservance. I am all for parents helping their kids - especially when very young, but as kids get into their adult levels, they need to take charge for their own cure...I know this may sound a little harsh too but codependency will not lead to a cure...however, some level help and support from others WHEN NEEDED is very conducive to getting cured. My only objective observation here, treehousemom, is to be supportive but do not do EVERYTHING for your daughter - she will need to step up to the plate to be eventually cured - I think this is something of what Dejavu was implying above. You're a great mother for putting you heart and soul into helping your daughter, don't get me wrong, but beating this Lyme menace has to come from the within the person who has it.

I can relate to your daughter because age 17 was when I first had the major debilitating symptoms of this disease (although I did not know it at the time). My parents took me to every type of doc known to man to try and figure out what was wrong to no avail - finally got the diagnosis of anxiety disorder with depression due to "stress". My parents were always in the background with support but I trudged my way out of that hole on my own and I think that made all the difference. I did it again about once every 5 years when I would get a flare up and until I finally was tested positive for Lyme just last year and we put it all together to finally figure out what was originally wrong back when I was 17!. It is my belief that EVERYONE in this world has within them the wherewithal to find a cure for themselves of ANY disease - we just have to dig deep and find the way....that is the same for your daughter but ultimately only she will be able to find that within herself! It's a body/mind/soul affair. We can support the process with feeding the body/physcial self as best we can but we also REALLY, REALLY have to access the deep down determination within to make it work for us....God Bless your daughter in her journey however way she addresses her treatment!
Posted 2/25/2012 12:56 PM (GMT -5)
Thanks Trav, for the "sometimes" explanation. If you subscribe to the ILADS approach, it includes abx as a necessary part of any Lyme treatment regimen in order to truly get well. Like you, I do not think that is necessarily completely correct but nevertheless, it's an important point. It's kinda why my NASA brain has wrapped around a hybrid approach of abx AND natural methods and then throwing in my own PERSONAL additives including aerobic exercise and the supportive therapies of acupuncture, chiropractic, yoga/meditation, etc. You have to find whatever work for YOU.

I know plenty of folks around here who have been cured via abxs ONLY - heavy doses of them and I know folks here who are being cured using purely natural methods. It seems that many folks fall somewhere in the middle like me - that's why I LOVE my LLMD - she explains the pros/cons of following the ILADS protocols versus the natural remedies and SUPPORTS me in BOTH. I went to see another LLMD who really didn't like to talk about the natural approach so I dropped her! LOL. If this doc is saying "my way or the highway", I would have been on the highway in an instant...but not necessarily giving completely up on the abx part of the protocol just because the doctor peed me off (can I say that?). Different people need doctors with different methologies and even different personalities. The original problem posed here seems to be more of a doctor issue than a treatment protocol issue.
Posted 2/26/2012 11:16 AM (GMT -5)
Hey Jessica!

What is an EAV machine?? Caity did go to a naturopath in the very beginning. He is affiliated with Cowden. We stopped going to him because Caity decided she wanted to go with antibiotics. I think that in the beginning, she thought that abx would be faster. Now that she knows that is not the case, she wants to stick with the natural route. The only reason we wanted to continue with the LLMD here in town, was that we could monitor her labwork and also continue to get pain/sleep meds. I am re-thinking this. . . .

Ironically enough, I am doing the Paleo diet. And that is what was recommended to Caity by her nutritionist. However, she is a teenager and it is so challenging for her. I am hoping that she can work toward this--and I think she is. I figured if I could do it, and learn about it, then I could then help her toward this. We are eating Paleo at dinner, but my husband and sons still have to have their sandwiches and occasional pizza.

I love my green smoothies, Caity cannot stand them. It would be so good for her. Yazzer is correct in that the problem with helping her so much is that I am not sure she is "getting it" that it is her body and she is going to need to take more and more responsibility for her decisions/lifestyle. She IS gluten-free and sugar-free now, which is a big deal--she was only eating saltine crackers and Sprite this time last year! Now she can eat salads, meat, vegies--most things actually. THAT is progress!!

Yazzer--as I said above, very good call. I would not tolerate this doctor except for the fact that I know he cares about Caity AND he is willing to give her meds to help with pain and sleep. I do not want her on prescription drugs, but we have tried so many natural remedies for sleep and pain both, and nothing has been effective. Even the prescription meds cease to be effective after awhile so we have to switch them around. I am considering just trying to get her off of them, of course, she thinks she really NEEDS them.

Traveler--thanks for all of the links. Will let Caity see them too!! You have been such a wealth of information and a light and beacon. Thank you for taking your time to be a forum moderator here--you help so many!! And glad to hear you are doing so well!!

Denise--no, to me testing for CCSVI is the LAST resort. Caity's CRT's have shown improvement, her energy level is up and we are just going to stay the course for now. I do not think I want her to do anything that invasive unless absolutely necessary. As I understand, I am not sure the procedure has that good of a track record anyway. I have really not done much research, so I am not sure, but those are my thoughts at this point!!

Thanks again for your thoughts and comments. Now to decide whether or not to boot this dr off of our team! Guess if he cannot tolerate that she is sticking with Dr. J--he is gone!! :-)

Hugs to you all!!!!
Posted 2/27/2012 8:47 AM (GMT -5)
Hi again treehousemom,

I think you misunderstood me when I asked if Caity was going to Vegas for an MRI... That was written in your blog (or Caity's blog, not sure who's blog it really is) to test for CCSVI as per Dr. J's suggestion. 

To my knowledge, an MRI is not invasive, it can show more compared to other scans...  I had MRI's done for other reasons (nothing to do with lyme) and I will only use an open MRI (the closed ones scare me!)...

Anyway, I first felt improvement in 4 weeks after starting Dr. J's protocol but I started with a "clean" body meaning I had no antibiotics in my system.   I had lost the use of my legs and after taking the Borrelogen I was able to walk and even exercise!   I detoxed (still do), tried to eat healthy as I could and it took less than one year before I felt symptom free (I went undiagnosed for 5 years after having so many doctors tell me that I didn't have lyme).

Now I am dealing with menopause, not fun! 

Keep up the good work!

Denise

Posted 2/27/2012 6:57 PM (GMT -5)
Thanks Denise!! Actually, I guess I meant that IF the MRI SHOWED that she had CCSVI, then we would have to consider the angioplasty. Caity posts about everything Dr. J says--and I really do not even want to head down that road unless absolutely necessary!! Hoping and praying for healing without it--actually her CRT's have really shown improvement. . .

I am getting close to that good ol age myself, girl!! WooHoo!!
Posted 2/29/2012 6:01 PM (GMT -5)
Hi again treehousemom,

I'm so happy that Caity is improving! That's great news!  Honest?  I never had children so I have no idea what it feels like to watch your own child suffer.. it must be a horrible feeling...  I don't like to compare animals to humans but I had 2 dogs and when they got sick, my entire world turned upside down..  My dogs were my life..  Now I have cats!  And maybe one day I'll get a goat or two, woo-hoo!

As far as menopause, some women just breeze through it but not me!  First I was happy to have no more periods, cramps, etc., now that I'm back taking my natural estrogen and progesterone supplements I am feeling better (I stopped taking them for a while because I was feeling so good, bad move on my part)... 

Denise

Posted 2/29/2012 7:04 PM (GMT -5)
Heeeeyyyy Denise! If you get goats, you had better let me know!! turn
Posted 2/29/2012 8:08 PM (GMT -5)
I will, I will!! 
Posted 2/29/2012 9:22 PM (GMT -5)
Treehousemom, can you tell me what is in your green smoothies? Our family is on a paleo diet as well, but per the Perfect Health Diet, we add about 300 calories of "safe starches" per day (white rice, white potato), so the liver doesn't have to expend much energy on gluconeogenesis. We do eat lots of greens, bok choy in casseroles and kale chips several times a week - the kids love them, but we would be up to a smoothie if you have a secret recipe. Liver, heart, eggs, grassfed ghee - yum. Keeping yourself symptom-free from lyme is a feat! My DD10 was on Abx for lyme/bart for 4 months along with Buhner protocol, A-Bart, A-L, immune boosting supplements. We tried to discontinue Abx while keeping everything else going, but she relapsed in Dec, so back on Abx for now. My 15 yo son is fairly athletic (not infected) and loves the way paleo leans him out and muscles him up.
Posted 2/29/2012 9:53 PM (GMT -5)
Hi Rowing mom!!

I started a new thread about the green smoothies!! Maybe we will get LOTS of ideas!!

My daughter has been on abx for 11 months, now we are trying the natural route using Dr. Jernigan's protocol. Hoping and praying it works!! So far, her energy is tons better, but she still has a lot of pain, insomnia and tachycardia. . . Hoping the energy thing is a beginning!
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