slipping backward??

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joee
Regular Member


Date Joined Dec 2011
Total Posts : 179
   Posted 4/19/2018 1:57 PM (GMT -6)   
Hey all!

Got a little bit of slippage I think.

I have been treated with antibiotics for 2 years this past december. about 4 months ago I thought I was making progress but had a concern that things may be slipping backward right before my last dr appt.

At my appt, I brought up that I was having tachycardia badly again. It never really went away but I would go days without it sometimes and that gave me hope. Well, I brought up that it was creeping back in a bad way and interfering with daily activities. The practitioner said that it may never go away (insert confused/scared face here) and that if I was not having sweating she was taking me off babs meds as that meant I beat it. She also said that I would be starting maintenance treatment with the next visit which was scheduled for 4 months. When I brought up my concern that I felt I was slipping she said that it was not a linear treatment and kind of got gruff with me that I need to stop this nonsense of thinking stuff would be moving forward. Again, just beside myself as I know its two steps forward 3 steps back, but geeze I need to be able to say I feel better somewhat after 2 years not just as bad off. She said that I would not feel better when starting maintenance but that my immune system will pick up now. I don't know if I am ready to agree as my immune system still is in the toilet. (also I have low lymphocytes and low white blood counts)

So during these 4 months, I was primarily treating bart and herxing very badly. As each treatment period went on the herxes became less to the point where I only herxed on the last day of treatment cycle.

But I was not feeling better overall. On my off weeks, I was miserable. And the tachycardia was back so badly and then the gastroparesis and with it daily sweating and severe headaches. I am sweating during the day a ton, but at night around 7 oclock it starts and it is just constant and during the time I am or should be sleeping I am constantly waking up soaked through my pjs and my hair is drenched. I cannot change my sheets or pajamas 8 times a night so I am uncomfortable all night long with the constant sweating, soaking, and then I get chills, then the next minute I am sweating again. Gahhhh

I am so exhausted again that most days I spend sleeping the whole day away. I walk the dog every morning slowly for about 2 miles and when I get home I am spent. I take to the couch and sleep.

Also, for the past year I have had tooth pain. My dentist could not find a problem anywhere, so she said because it comes and goes just try to wait it out because it was probably just lyme nerve issues and may resolve with lyme treatment. (she isnt a dentist who likes to go poking around messing with teeth that look fine). So she said if it doesn't resolve to see an endodontist she recommends. Finally, I went to him and he said the trouble was not in the tooth with a crown as my dentist suspected but the tooth behind it. We agreed to do a root canal and when he got in there he found the nerve was so very angry, nothing like he has ever seen before. He said it was full of stones which means the nerve has been unhappy for a very long time and it creates stones. This would never have resolved itself once it got to this point he said. So here I was with major inflammation in my tooth and nerve irritation to boot. He feels it could be lyme related or not...not sure...but either way he did a root canal. A week later I am still feeling really crappy in my whole mouth, but he said the amount of nerve irritation will take a long time to heal, longer for me than a normal person. So I am dealing with that angry stuff in my mouth too. His opinion and mine was that as long as I had this stuff going on in my tooth that I would never get well with the lyme. He said that the immune system will spend so much time trying to deal with this that the rest of my body gets ignored and can allow lyme to have a field day in my body. I agree with that statement.

Does this sound like bart or babs to any of you?

I am worried that because I had so much going on that I was not really knowing was a problem in my mouth that now I need to keep going with treatment of babs and or bart and maybe the lyme too just to get on top of stuff my immune system couldn't handle.

My practitioner wants to do the maintenance protocol next and I do not feel ready for that. My appt is tuesday and I am really a wreck about it. If they stick to their guns about the maintenance part I am not sure what to do...maybe go herbal on my own at that point.

Frustrated cause this is dr j's office and I feel like I am being rushed in treatment now and just beside myself about it. I invested a lot of money and hope and time with them and I am feeling a bit dismayed at this point and really sinking low mentally. I am seeing a new practitioner in the practice this time around so fingers crossed. I would like to see dr j himself before they give up on me but I am not holding my breath to get that appt set up. I am at a very low point and ready to give up treatment at this point. I am tired of being sick for 9 years and the last 2 being almost unbearable it is finally wearing me down past hope stage and in I will never get better and just let nature take its course now. ugh...

Opinions anyone? Thanks so much for reading this lengthy post.

elvin
Regular Member


Date Joined Apr 2018
Total Posts : 86
   Posted 4/19/2018 2:31 PM (GMT -6)   
I'm new here but have you tried herbals?

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 4/19/2018 2:31 PM (GMT -6)   
joee,

I'm so sorry about all of this. I can totally understand how upset you feel. I would be too. I'm on my phone right now but will come back later and post a longer response. Your concerns are valid. Your needs are not being met by your doctor. You DO still have HOPE for better than what you've gotten and OPTIONS. I'll be back later.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32624
   Posted 4/19/2018 2:51 PM (GMT -6)   
Joee - if you are sweating - then why is the NP taking you off the Babs meds?
Isn’t that what she said - becuz you aren’t sweating - she’s stopping them?


One of the reasons I went to the J clinic is he stated in an interview that he never gives up on patients.
Have you been on the persister protocol yet?

I find this very odd and troubling.

My LLND basically gave up on me - it’s an awful feeling..I’m so sorry you’re dealing with this.
I know people from the J clinic who have been treating with him for over three years.
One tried the 3 days per month protocol and regressed so is back on two weeks on and two weeks off.

See if you can have an appt with Dr J himself. (Good luck - I’m finding it to be a challenge) mad
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32624
   Posted 4/19/2018 2:54 PM (GMT -6)   
Btw - have you always seen NP’s/PA’s or have you seen Dr J now and then?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

joee
Regular Member


Date Joined Dec 2011
Total Posts : 179
   Posted 4/19/2018 3:11 PM (GMT -6)   
Girlie,

I have only seen dr j on my first visit. Then np's. My next appt is with Kim because KL left.

I wasn't sweating when she took me off the babs meds just an increase in my tachycardia symptoms. I started sweating as soon as the week after that appt. So I am curious to see if this new pa puts me back on babs treatment or wants to start maintenance.

I am not sure what you mean by persister protocol. I have done the whole gamut I think. What is the persister stuff.

I am currently on 2 weeks off 3 and that is when things seem to go south for me.

Walking,
Thanks so much for reaching out to me. I look forward to your response if you have time.

Hi Elvin,
I havent done a herb protocol solely herbs. I have herbs mixed in somewhat with what my llmd is doing but I would say no its mostly antibiotics with some herbs they use too. Not much. I am considering doing buhrner if they kind of give up on me.

I met a man today on my daily walk who has had lyme. He feels he was infected with it as a child. He only did herbs with a naturopath and says he feels fantastic. No lyme symptoms at all. With my lyme brain I didn't think to as who he saw until we parted ways. I will walk that same trail a few more times around the same time of day to see if we meet up again. Otherwise, I know someone else on the trail who is his neighbor and I may ask her to get that info for me the next time I see her on the trail. God works in mysterious ways...didn't think about herbs for my treatment till yesterday and today I meet a man who comments on my thyroid scar (he had his thyroid removed like me-same sort of situation) and then tells me he had lyme too. Whaaaatttt????? I'm sure we were meant to meet.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32624
   Posted 4/19/2018 3:39 PM (GMT -6)   
joee said...
Girlie,

I have only seen dr j on my first visit. Then np's. My next appt is with Kim because KL left.

I wasn't sweating when she took me off the babs meds just an increase in my tachycardia symptoms. I started sweating as soon as the week after that appt. So I am curious to see if this new pa puts me back on babs treatment or wants to start maintenance.

I am not sure what you mean by persister protocol. I have done the whole gamut I think. What is the persister stuff.

I am currently on 2 weeks off 3 and that is when things seem to go south for me.

Walking,
Thanks so much for reaching out to me. I look forward to your response if you have time.

Hi Elvin,
I havent done a herb protocol solely herbs. I have herbs mixed in somewhat with what my llmd is doing but I would say no its mostly antibiotics with some herbs they use too. Not much. I am considering doing buhrner if they kind of give up on me.

I met a man today on my daily walk who has had lyme. He feels he was infected with it as a child. He only did herbs with a naturopath and says he feels fantastic. No lyme symptoms at all. With my lyme brain I didn't think to as who he saw until we parted ways. I will walk that same trail a few more times around the same time of day to see if we meet up again. Otherwise, I know someone else on the trail who is his neighbor and I may ask her to get that info for me the next time I see her on the trail. God works in mysterious ways...didn't think about herbs for my treatment till yesterday and today I meet a man who comments on my thyroid scar (he had his thyroid removed like me-same sort of situation) and then tells me he had lyme too. Whaaaatttt????? I'm sure we were meant to meet.


So have you been seeing KL then? Is that the one who said you're going on maintenance?
She's who i had for my initial consult.
I heard KF is very good. Do what you have to do to keep going - tell her about the sweats right away...and don't mention that KL said you need to go on Maintenance...although it's most likely in notes that KF will read.

I doubt if you've done persister protocol yet. It's fairly newish. It involves Dapsone and/or Daraprim (or both - sorry I can't remember).
Maybe only Dr. J. does that protocol...

Did you ever do Rifabutin for bart (instead of Rifampin)?

How about Alinia?

What I've mentioned are all meds that Dr. J. prescribes...and if you haven't tried them...then it's worth a discussion about them.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

elvin
Regular Member


Date Joined Apr 2018
Total Posts : 86
   Posted 4/19/2018 4:13 PM (GMT -6)   
I quickly gave up on abx due to reading too many bad outcomes. I have had success with oregano oil, olive leaf, apple cider vinegar, and monolaurin. I might add turmeric too. I tried some of buhner herbs but they seemed too weak somehow although some people seem to benefit. Get pill form if you do the oregano. I use zane Hellas brand on amazon.

joee
Regular Member


Date Joined Dec 2011
Total Posts : 179
   Posted 4/19/2018 4:16 PM (GMT -6)   
Yes I have been seeing KL. She is the one who said maintenance next.

I did include in my paperwork that I submitted that my biggest problems right now are the tachy/short of breath, sweats, and cognitive stuff.

I haven't done any of the persister meds you mentioned. but I have done rifabutin for bart. That gave killer herxes so it was doing something.

Never did alinia either.

I'm hoping Kim will have fresh eyes to this situation.

Thanks so much Girlie you really are a treasure here on this forum and I honestly don't know where I would turn if I didn't have this forum. I value your responses to my questions and the ones I read that others post and you comment on. Thanks!!! Thanks!!! Thanks!!! You are awesome sauce! (does awesome sauce have gluten in it???? hahaha )

joee
Regular Member


Date Joined Dec 2011
Total Posts : 179
   Posted 4/19/2018 4:18 PM (GMT -6)   
Thanks Elvin,
I may ask if I can add oregano oil into my protocol. It was mentioned once to me for some issue I was having so I may ask about it again. I do ACV and def do tumeric on a daily basis. That was told to me by my llmd to control inflammation. I take it everyday.

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2115
   Posted 4/19/2018 4:23 PM (GMT -6)   
Hi joee,
I hope things go much better at your next appointment with the new practitioner.

Remember to write a log of your symptoms down and the intensity of them based on a scale of 1(least) to 10(highest).
Write down your main concerns and questions you need answered or things you need explained.

Bring those with you and go over it all with the NP.

Please don't give up on treatment and the chance to get to remission.

I understand its been a long hard road for you so far, but we have heard many stories here on the forum of members finding the right treatment or combination of treatments and they got better.

Please keep us updated on your next visit and reach out for support whenever you need it. e are here and we do understand your struggles.

Take care

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32624
   Posted 4/19/2018 4:43 PM (GMT -6)   
joee said...
Yes I have been seeing KL. She is the one who said maintenance next.

I did include in my paperwork that I submitted that my biggest problems right now are the tachy/short of breath, sweats, and cognitive stuff.

I haven't done any of the persister meds you mentioned. but I have done rifabutin for bart. That gave killer herxes so it was doing something.

Never did alinia either.

I'm hoping Kim will have fresh eyes to this situation.

Thanks so much Girlie you really are a treasure here on this forum and I honestly don't know where I would turn if I didn't have this forum. I value your responses to my questions and the ones I read that others post and you comment on. Thanks!!! Thanks!!! Thanks!!! You are awesome sauce! (does awesome sauce have gluten in it???? hahaha )


Awww, joee - now i'm tearing up.....I got quite emotional reading your post...because my llnd wasn't really 'trying' to get me well anymore...and I felt so defeated...I know the desperation you are feeling.

Between you and I (and the rest of the forum members) - I think maybe KL was suffering from burn-out and I bet a new set of eyes will be helpful. No matter what - I think it never hurts for another person to look over your history...what you've tried...etc...and tweak things.

And...it looks like there are some options that you haven't tried yet.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 4/24/2018 6:16 PM (GMT -6)   
joee,

I just saw your response to yancync's post and you mentioned you had your appointment today and it went well. That's good news. Are you feeling hopeful again?

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1246
   Posted 4/24/2018 6:45 PM (GMT -6)   
Sound to me like they left an infection in your jaw. Root canals are always infected-There are plenty of docs that start their lyme discussion with pulling out all root canals (because they are infected).

People with lyme should not get root canals- long term smoldering infection wears down immune system opens door for sickness

Donjr
Regular Member


Date Joined Apr 2018
Total Posts : 88
   Posted 4/24/2018 8:43 PM (GMT -6)   
Joee,
This may sound weird but try it, my tach stopped cold by eating raw garlic one clove twice daily, cut it in small pieces and take with 8 oz water on empty stomach, then 10 mins later eat something on top of it, start with one in am for three day to see if you tolerate it then go to two. YouTube can show how to take it I cut mine small pieces let sit 5 mins on a tablespoon I also cut it on the spoon to not loose and juices. Then put in mount hand water it down you throat do not chew. I was having panic so bad and a nurse told me at er to do this and guess what it works, at least for me. The garlic has a chemical that regulates heartbeat and it help detox but you will hex with exhausted feeling and heavy arms and dizziness for about an hr about an hr after taking it it kills the bugs. Hope this helps if it does please let me know.
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