Advice on Treatment

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Hoagie
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Date Joined Jul 2017
Total Posts : 614
   Posted 3/16/2018 9:24 AM (GMT -6)   
I've been treating since August 2017. And been getting worse. I had a brief period of stability with a little improvement. But, once restarting abx, I began declining again.

So, before I started treatment, my symptoms were slight balance problems, slight tinnitus, migraines, blurred vision, slight peripheral neuropathy.

Since starting abx, balance and weakness has gotten progressively worse. Movement is really bad. Fatigue is debilitating at times. Anxiety is through the roof. Tinnitus gets really bad during herxes. Vision is the same. Neuropathy comes and goes. I no longer get migraines.

I noticed that my balance and movement would always get a little bit worse on my week off of abx. I now think this is because of an extended Flagyl herx. I take the Flagyl at the end of every cycle. I stopped towards the end of November. By mid January, I was starting to stabilize and actually feel better. So, I went back on abx. The first cycle was good. But, I started declining again during the 2nd cycle. And after I took the Flagyl, I went downhill fast. I then stayed off abx for almost 3 weeks. I started feeling a bit better after 10 days of being off. This past Monday I started back on again. My LLMD added Plaquenil to the protocol.

I almost immediately went downhill and can barely walk right now. I stuck with it and took Flagyl yesterday. My LLMD wants me on 2 weeks on / 2 weeks off. However, he would like me to take Flagyl each Thurs and Fri of the on weeks. I cannot do it. The Flagyl alone just about put me over the edge yesterday. Today is supposed to be my big day where I take all abx including Flagyl. It's not going to happen.

I found this write up yesterday titled, "Managing through the Herxheimer Reaction
by the same LLMD (Lyme-literate MD)"

francisholisticmedicalcenter.com/images/Managing_through_the_Herxheimer_Reaction.pdf

It sounds like my herxing is doing damage that may end up being irreversible. Plus, since going on abx, I developed and bad rash on my face and periodic diarrhea. At this point, I am thinking that I will need to go a more natural, holistic route.

For the time being, I am going to focus on heavy detoxification. But, once I feel better, I'm not sure ii I should maybe start out really slow with abx, as I had dove in head first initially. And, this may have been the problem. Or maybe I need to treat with diet, herbs, and essential oils.

I'd love input from people who have had similar experiences with treatment.

Post Edited (Hoagie) : 3/16/2018 9:29:29 AM (GMT-6)


Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 455
   Posted 3/16/2018 10:53 AM (GMT -6)   
This isn't advise as much as just a note of agreement.

I can't say my experience is similar to yours, but I do agree with the idea of taking things slowly if possible and that's what I've been doing. I refused to take Flagyl (though that's because of cancer in the family) and I added other things in gradually instead of all at once. (Still haven't gotten around to adding cyst-busters and biofilm busters.) I don't want to make myself super sick again like I did last fall with a big flare and herx that put me out of commission for more than a month. Let the abx kill some of the bacteria, then turn over another stone as that LLMD wrote and find some more. This seems to be working for me for now.

Have you figured out the mechanism that is causing the trouble walking? Is it related to inflammation somewhere in the nervous system? What happened with the lesion (I think it wasn't a lesion but can't remember the name) in your brain?

Liked that article, thanks for sharing.

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1601
   Posted 3/16/2018 11:15 AM (GMT -6)   
have you tried taking any Alka-Seltza Gold to help take the edge off of a herx? It does help.

Also for Antibiotic Associated Diarrhea (AAD) try Florisor, a sacchromyses boulardii (sp?) strain of probiotics not usually included in regular probiotics.

Also drink lots of lemon water. What do you take for your liver... Milk Thistle is recommended.

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/16/2018 11:36 AM (GMT -6)   
Dahlias said...
This isn't advise as much as just a note of agreement.

I can't say my experience is similar to yours, but I do agree with the idea of taking things slowly if possible and that's what I've been doing. I refused to take Flagyl (though that's because of cancer in the family) and I added other things in gradually instead of all at once. (Still haven't gotten around to adding cyst-busters and biofilm busters.) I don't want to make myself super sick again like I did last fall with a big flare and herx that put me out of commission for more than a month. Let the abx kill some of the bacteria, then turn over another stone as that LLMD wrote and find some more. This seems to be working for me for now.

Have you figured out the mechanism that is causing the trouble walking? Is it related to inflammation somewhere in the nervous system? What happened with the lesion (I think it wasn't a lesion but can't remember the name) in your brain?

Liked that article, thanks for sharing.

Thanks Dahlias!

One thing all my doctors are in agreement on is what is causing the imbalance issues. It is the inflammation coming off the lesion. We just can't get the down. I'm now thinking it may be autoimmune. But, I'm not sure. I do know that the abx (the flagyl especially) is causing major inflammation up there.

I think I'm going to go an all natural route for the next couple months and see where that gets me.

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 455
   Posted 3/16/2018 11:47 AM (GMT -6)   
Hoagie said...
One thing all my doctors are in agreement on is what is causing the imbalance issues. It is the inflammation coming off the lesion. We just can't get the down. I'm now thinking it may be autoimmune. But, I'm not sure. I do know that the abx (the flagyl especially) is causing major inflammation up there.

I think I'm going to go an all natural route for the next couple months and see where that gets me.


Inflammation caused my major herx symptoms too, though they were different symptoms. It took at least three months for the inflammation to subside, while I continued treating with abx at a pace I was comfortable with. You don't want to maybe try a gentler abx protocol for a few months before switching? I feel like this treatment is about finding a balance, and big or frequent changes can upset the balance more IMO.

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/16/2018 11:48 AM (GMT -6)   
tickbite666 said...
have you tried taking any Alka-Seltza Gold to help take the edge off of a herx? It does help.

Also for Antibiotic Associated Diarrhea (AAD) try Florisor, a sacchromyses boulardii (sp?) strain of probiotics not usually included in regular probiotics.

Also drink lots of lemon water. What do you take for your liver... Milk Thistle is recommended.


I have tried the alka seltzer, tickbite. And thank you. It was the s boulardii that helped me out the most. I used to have pretty chronic diarrhea issues. The s boulardii took care off that, but I still have issues sometimes while taking abx.

I am currently on a detox regimen given to me by my LLMD. Pekana detox kit, Hepetagest, Zeobind, liposomal glutathione, burbur, parsley, epson salt baths, enemas.... the works. My herxes involve a deterioration of my lower motor skills and balance, crushing fatigue, anxiety, and increased tinnitus.

It's not necessarily just that I'm herxing. I understand that happens to us all. But, it's the severity and duration of the exaggerated symptoms that is really concerning. And after reading that article last night, I am fairly certain I need to back off big time, or completely.

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1601
   Posted 3/16/2018 12:19 PM (GMT -6)   
you sound like you got all the bases covered. Then maybe a break is needed.

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 544
   Posted 3/16/2018 12:43 PM (GMT -6)   
Hoagie, I'm sorry to hear of your troubles. The digestive stuff is not good and I would try some other probiotics with more s boullardi. I think you may see Dr. J/DC. If so, I would let them know. When they tried to give DS Cipro, I declined and they came up with an alternative. I'm not sure if they have one for Flagyl but you could ask. Also, they have cut back on DS's treatment when it was causing too much herxing and that helped at various points. The first 2 years were brutal and it was a balancing act with the abx, inflammation and herxing.
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, Charlotte's Web Advanced CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 455
   Posted 3/16/2018 12:50 PM (GMT -6)   
yancync said...
I think you may see Dr. J/DC. If so, I would let them know. When they tried to give DS Cipro, I declined and they came up with an alternative. I'm not sure if they have one for Flagyl but you could ask.


My NP at Dr. J's office didn't want to allow an alternative to Flagyl, but when I refused to take it, they suggested GSE instead.

yancync
Veteran Member


Date Joined Nov 2015
Total Posts : 544
   Posted 3/16/2018 12:53 PM (GMT -6)   
PS, perhaps because DS is a teen, he has only ever taken Flagyl 1 week (TH/FR) a month and bizarrely has never had any effects from it. His was from all the other meds!
Parent of teen DS w/ CDC+ Lyme test Nov 2015, late stage Lyme + mycoplasma, bartonella, babesia. Currently treating with antibiotics/anti-malerials, multivitamin, magnesium, Charlotte's Web Advanced CBD oil.

Website I started: ParentsofLymeKids.com aka Lyme Disease 101 for Parents

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32559
   Posted 3/16/2018 1:15 PM (GMT -6)   
yancync said...
Hoagie, I'm sorry to hear of your troubles. The digestive stuff is not good and I would try some other probiotics with more s boullardi. I think you may see Dr. J/DC. If so, I would let them know. When they tried to give DS Cipro, I declined and they came up with an alternative. I'm not sure if they have one for Flagyl but you could ask. Also, they have cut back on DS's treatment when it was causing too much herxing and that helped at various points. The first 2 years were brutal and it was a balancing act with the abx, inflammation and herxing.


Dr J doesn’t usually prescribe plaquenil..so I don’t think it’s Dr J
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

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/16/2018 5:57 PM (GMT -6)   
Girlie said...
yancync said...
Hoagie, I'm sorry to hear of your troubles. The digestive stuff is not good and I would try some other probiotics with more s boullardi. I think you may see Dr. J/DC. If so, I would let them know. When they tried to give DS Cipro, I declined and they came up with an alternative. I'm not sure if they have one for Flagyl but you could ask. Also, they have cut back on DS's treatment when it was causing too much herxing and that helped at various points. The first 2 years were brutal and it was a balancing act with the abx, inflammation and herxing.


Dr J doesn’t usually prescribe plaquenil..so I don’t think it’s Dr J


Correct. I no longer see Dr J. I see an integrative LLMD closer to home.

I spent 30 minutes this afternoon talking to the owner of an aromatherapy establishment about supplementing with essential oils for treatment. She was very interested and helpful. She has Lupus, herself. She doesn't know a whole lot about Lyme besides what she looked up before her Lupus diagnosis. She thought she possibly had Lyme. She is going to study up on it and I will be visiting her on the coast (Wilmington, NC) and we are going to come up with a plan of attack. I am also strongly thinking about finding and working with an herbalist. We'll see. I may just end up dropping the typical LLMDs, and go a 100% holistic route.

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 207
   Posted 3/16/2018 6:23 PM (GMT -6)   
I was on flagyl for about a week during my lyme treatment. It actually wasn't prescribed by my lyme dr, but by an urgent care dr after I got a dog bite. I couldn't manage it longer than that, and when i went to my lyme dr, she said she rarely prescribes it for patients because of the reaction most have. I felt as if I got worse on flagyl. For one thing, my candida went crazy, for another thing, I was feeling physically sick from it, I also had diarrhea. I wouldn't go on it again as I definitely felt worse on it and was slow to return to my previous state. 6 months later, i think I'm finally getting my candida under control. I'm still slowly progressing, but I think I would have been much farther along if it weren't for the flagyl.

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/16/2018 8:36 PM (GMT -6)   
Thanks for your input PDX. I am just about certain the Flagyl is making me worse. I'm wondering about the other antibiotics. I'm still debating on going back on abx. If I do, it will be in a coiple months. And no Flagyl ever again.

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 207
   Posted 3/16/2018 10:25 PM (GMT -6)   
I went off all antibiotics when i went off flagyl and switched to herbs only at that point. I had a lot of neuro symptoms initially and was worried about MS/ALS/other horrible diseases, but the majority of my neuro symptoms had resolved by the time I went off abx. I do think abx made a huge impact in my recovery, just not the flagyl. Though I describe my progress as slow, my dr has said that my recovery is faster than is typical. You have been on abx since Aug?

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/16/2018 10:33 PM (GMT -6)   
PDXtransplant said...
I went off all antibiotics when i went off flagyl and switched to herbs only at that point. I had a lot of neuro symptoms initially and was worried about MS/ALS/other horrible diseases, but the majority of my neuro symptoms had resolved by the time I went off abx. I do think abx made a huge impact in my recovery, just not the flagyl. Though I describe my progress as slow, my dr has said that my recovery is faster than is typical. You have been on abx since Aug?


Yes, since Aug. Took a break in Dec and Jan and started feeling better. I'm wondering how long I should let myself get worse before trying something different.

How long were you on abx until you started seeing progress?

And what was your protocol, if you don't mind me asking?

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 207
   Posted 3/16/2018 11:31 PM (GMT -6)   
On June 8, 2017, when I got my positive lyme test, the dr who gave me the test results put me on 200 mg of doxy twice a day. On the 15th of June, I had my first visit with an LLND who changed me to cefdinir 125 mg/day and 50 mg minocycline every other day. I increased the cefdinir to twice a day and the mino daily after a week or two. On July 17, my LLND increased it to 300 mg cefdinir 2x/day, 100 mg mino 1x/day. I stayed on this til I got the dog bite mid of August, when they put me on flagyl and doxy for a week. Then I stopped all abx bc of how sick I was feeling. My next appt with my LLND was 8/30 and she gave me the okay to go to herbs only, telling me if I started feeling worse she would prob put me back on them. So, I was on abx for a little over two months.

When I went on abx after my diagnosis, I noticed small improvements within the first week or two. For example, I would often wake up with numb hands or this whole body vibration, that reduced/went away almost immediately. However, I was also having swallowing issues and problems related to some sort of facial paralysis, and this took longer to go away, although the swallowing issues went away after about a month. Balance issues, heavy legs, right side numbness went away right away, but I still had muscle weakness for a long time. So, to summarize, I'd say after about 5 weeks, I noticed significant improvements, small improvements right away. about once a month, I would feel worse or really crappy for a few days, but then would improve to a level I hadn't achieved before. Until I took the flagyl, that is...The flagyl knocked me on my a** and I felt as if my recovery was much slower at that point.

I've been on herbs only ever since. It's been a little up and down. My main remaining symptoms are muscle twitching, occasional upper right leg weakness, tachycardia/BP issues, and stomach issues (can I still blame the flagyl for this), but overall, I'm able to do everything I did before I got lyme.

I hope this helps you. I know every with lyme responds differently and has different symptoms, but I thought it might help to see my specific treatment.

Hoagie
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Date Joined Jul 2017
Total Posts : 614
   Posted 3/17/2018 12:41 PM (GMT -6)   
Thank you. You responded fairly quickly to tx IMO. I started treatment shortly after you and at the end of each cycle, I would get worse, not better. Maybe I should just cut out the Flagyl and see what happens.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32559
   Posted 3/17/2018 1:00 PM (GMT -6)   
yancync said...
PS, perhaps because DS is a teen, he has only ever taken Flagyl 1 week (TH/FR) a month and bizarrely has never had any effects from it. His was from all the other meds!


The Flagyl hasn’t affected me either... nor did its cousin Timdamax.
One reason is because 2 days per month isn’t a lot.


Although I took it for several days (a week?) prior to Lyme diagnosis when I had something show up after a Pap test. And I didn’t herx (it was right before my Lyme diagnosis)
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 : 32559
   Posted 3/17/2018 1:05 PM (GMT -6)   
The Flagyl is used to bust cysts - so it may be causing a worsening of symptoms because you’ve got a release of spirochetes flooding your system
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

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/17/2018 1:41 PM (GMT -6)   
Girlie said...
The Flagyl is used to bust cysts - so it may be causing a worsening of symptoms because you’ve got a release of spirochetes flooding your system
True. But it just seems like i get further away from baseline everytime I take Flagyl. I'm in a really tough spot right now. Id hate to stop and give the bugs more real estate. But then again, after reading that article, I don't want to keep going and get worse and worse. I did almost 4 months of treatment at first and ended up having to go on disability. I go off it for 2 months and started feeling better. Back on and worse than ever.

Maybe I just need to take it slow. My LLMD has me on a very aggressive protocol. I read Plaquinel is a cyst buster too. If that will do, maybe I don't need another one. But if I do need another cyst buster, I'll see if grapefruit seed extract would be an ok alternative. This Flagyl scares me to death at this point.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32559
   Posted 3/17/2018 2:01 PM (GMT -6)   
You could also try tindamax instead.

Or maybe wait awhile and not do any cyst busting at this point.
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

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/17/2018 7:12 PM (GMT -6)   
Girlie said...
You could also try tindamax instead.

Or maybe wait awhile and not do any cyst busting at this point.


Not sure what to do right now. I think I may jst go back on the protocol when I start feeling better and half the plaquenil and ditch the Flagyl. I'll call my LLMD next week and go over it with him. Either way, in my current mental state, I probably shouldn't be making any types of decisions like this.

I'm going thru a hell herx as I type this. I'm very stiff and slow moving. And I feel like I'm going crazy. What a joyous affliction we have.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32559
   Posted 3/17/2018 7:30 PM (GMT -6)   
Hoagie said...
Girlie said...
You could also try tindamax instead.

Or maybe wait awhile and not do any cyst busting at this point.


Not sure what to do right now. I think I may jst go back on the protocol when I start feeling better and half the plaquenil and ditch the Flagyl. I'll call my LLMD next week and go over it with him. Either way, in my current mental state, I probably shouldn't be making any types of decisions like this.

I'm going thru a hell herx as I type this. I'm very stiff and slow moving. And I feel like I'm going crazy. What a joyous affliction we have.


Oh no...so sorry.
Try not to think about anything now....just try to make yourself comfortable...and keep telling yourself this will pass.
I always get these horrible thoughts when I herx...so it's best that I distract myself.
Do whatever you can to help relieve it...warm bath...laying down...etc. Calming herbal tea if you have it.
Employ any detoxing that usually helps you .
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

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/17/2018 7:39 PM (GMT -6)   
Girlie said...
Hoagie said...
Girlie said...
You could also try tindamax instead.

Or maybe wait awhile and not do any cyst busting at this point.


Not sure what to do right now. I think I may jst go back on the protocol when I start feeling better and half the plaquenil and ditch the Flagyl. I'll call my LLMD next week and go over it with him. Either way, in my current mental state, I probably shouldn't be making any types of decisions like this.

I'm going thru a hell herx as I type this. I'm very stiff and slow moving. And I feel like I'm going crazy. What a joyous affliction we have.


Oh no...so sorry.
Try not to think about anything now....just try to make yourself comfortable...and keep telling yourself this will pass.
I always get these horrible thoughts when I herx...so it's best that I distract myself.
Do whatever you can to help relieve it...warm bath...laying down...etc. Calming herbal tea if you have it.
Employ any detoxing that usually helps you .


Thanks again Girlie! I really appreciate you!

I'll be ok, it just really sucks. I was already having a rough day, but I was feeling bad because my son was asking me if I could fix his bike so he could ride around the neighborhood. So, I did. Then I started feeling a little bit better. So, I went in our crawlspace to check on the work that the HVAC people did yesterday and noticed some water on the vapor barrier from before a leak was fixed. So, I had to get out the shop vac, clean up the puddles, and check for any overlooked leaks. Took a shower. And by that time, I was DONE! I don't feel comfortable in my skin at the moment if that makes any sense. My movement makes me feel like I have Parkinsons.

But, as you stated, I get a little comfort in knowing this will pass. But there is always a voice in the back of my head saying, "You are going to devolve into a vegetative state." And I f'n hate that voice!

This board has been a blessing to me in this time and I look forward to the day when I am better and can come here and give hope to those who need it.
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