Having a very hard time measuring my "progress" 1 year now

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

evianangel
Regular Member


Date Joined Jan 2016
Total Posts : 418
   Posted 3/22/2017 5:37 PM (GMT -7)   
I have been using Buhner herbs now since May 2016. I haven't done them perfectly and it has been much trial and error, as well I have lacked consistency, taking breaks here and there. The core herbs I have used are Japanese Knotweed, cats claw, Andrographis, Teasel and couple other support herbs.

I haven't however added Gou Teng yet. Which I am told is very crucial for Neurological symptoms. I've had periods of time in the summer where I thought my lyme was in remission and I had very minimal almost no symptoms. But then it always comes back. Now I feel like I am getting worse. Every two weeks it is a new onslaught of symptoms ranging from fatigue, bladder issues, pain in the eyes, migrating pains, weakness in my muscles, mild numbness.

I haven't really gotten to the full recommended doses with any of the herbs because I was ordering tinctures and I knew I would run out too fast if I took 1tsp.

Now I've put in an order to 1st Chinese herbs for the bulk powders and I am going to start making my own capsules so I can reach a higher dose.

From what people say it can take years on these herbs to feel better, so I guess this will be my last kick at the can this time around. I really feel like I am going in circles.

Could it be the buhner herbs are just not working? And I haven't been tested for co-infections but I added in Houttiyana two months ago for suspected Bart.

Thank you again as always for your advice.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27969
   Posted 3/22/2017 5:45 PM (GMT -7)   
evian - I would suggest you treat for all three infections if you haven't gotten to symptom free just treating lyme and adding in Houtt for bart.

You could add in Cryptolepis and sida acuta for babs (and sida is good for bart, too)

Also, did these new symptoms appear...while you have been on a break from the herbs?
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

Krimpet 🍔
Veteran Member


Date Joined Apr 2016
Total Posts : 3274
   Posted 3/22/2017 5:45 PM (GMT -7)   
Well a year isn't long in terms of protocols, so I don't think that's the issue. It can be a number of things, co-infections, viruses, the right herbs at the right dosage, rotating herbs to see if there are co-infections. Also your body chemistry, adrenals, immune system, stress, sleeping, environment, molds, mycotoxins, eating, etc., all play into the healing picture. And honestly it really is trial and error.

Some people will add in other protocols or just switch entirely after giving a protocol some time to work for them.

It's great that you are adding houttuynia. It may be a key herb for you. Also you do want to change it up some....keeps the bugs guessing.
Lyme Moderator

Current treatment: Samento, Cumanda, Banderol, Pinella, Burbur, Beyond Balance-tox ease gl, BB-1, EN-MC, lomatium, cats claw, cordyceps, licorice root, Hawthorne, milk thistle, burdock root, oregano oil, gse, adrenal homeopathy, adrenal cortex, EBV homeopathy, past injury homeopathy, host of vitamins, organic foods
________________________________________
"When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.” ~Harriet Beecher Stowe

evianangel
Regular Member


Date Joined Jan 2016
Total Posts : 418
   Posted 3/22/2017 5:53 PM (GMT -7)   
My new symptoms cropped up some time after I started taking Houtt...I have felt pretty crummy since I started it. I have been on a herb break now for a week and a half because I ran out, and my symptoms have gotten pretty miserable.

I find they change every week or so. The other week it was insomnia and anxiety, now this week it is pains and fatigue. Three weeks ago it was twitching and tremors.

I am feeling increasingly overwhelmed I was thinking of setting an appointment up with a herbalist for some guidance.

I know that I probably have issues that need addressing, but I haven't been able to find a good Naturopath Doctor to help me yet with those.

Another thing that gets me is if I start feeling good again, I kind of shrug things off, get lazy with protocol's, don't bother about finding a doctor etc.

Is it common for lyme to come and go just like that? Even while on a treatment protocol?
Symptoms of Lyme Disease started in Nov 2015
Diagnosed by ND & Igenex Test March 2016
Started Buhner's Protocol May 2016
60% Better August 2016

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27969
   Posted 3/22/2017 6:21 PM (GMT -7)   
What about having a consult with one of Buhner's recommended herbalists?


There is a LLND near you...maybe two...if you're interested. (Maybe I already passed the names on to 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

evianangel
Regular Member


Date Joined Jan 2016
Total Posts : 418
   Posted 3/22/2017 6:24 PM (GMT -7)   
I think that is what I should do, as I heard CD and others have nothing but good things to say about that.
Symptoms of Lyme Disease started in Nov 2015
Diagnosed by ND & Igenex Test March 2016
Started Buhner's Protocol May 2016
60% Better August 2016

CD3764
Forum Moderator


Date Joined Sep 2014
Total Posts : 4508
   Posted 3/23/2017 5:43 AM (GMT -7)   
I'm glad to see that you're considering an herbal consultation, evianangel.

I believe my healing journey would have been shorter if I did that from the get-go.

Herbalists are much less expensive than MD's.

In the meantime, I hope you're able to take your herbs consistently - especially stuff like Japanese Knotweed, Red Sage/Chinese Skullcap as well as Cat's Claw/Cordyceps.

These are the herbs that heal the damage caused by the bugs and that rebuild the immune system so we stand a chance of joining those asymptomatically infected.

Good luck!
Apr '14 tick bite -only knew to watch for the rash that never developed
Jul '14 tick bite - inadequate abx from PCP
Sept '14 met LLMD - clinical Lyme dx due to Bells Palsy/started abx (CDC positive IgM)
Feb '15 weaned off abx at 90% healed/started full Cowden protocol
Aug '15 still at 90% -started transition to Buhner's full BBB protocols
Aug '16 99% healed - started modified Buhner protocol

CD3764
Forum Moderator


Date Joined Sep 2014
Total Posts : 4508
   Posted 3/23/2017 5:48 AM (GMT -7)   
Forgot to mention...

In his book "Freedom from Lyme Disease", Bryan Rosner writes that the last 10% of healing often takes longer than the first 90%.

That's been my story as evidenced in my signature.

You will get there.
Apr '14 tick bite -only knew to watch for the rash that never developed
Jul '14 tick bite - inadequate abx from PCP
Sept '14 met LLMD - clinical Lyme dx due to Bells Palsy/started abx (CDC positive IgM)
Feb '15 weaned off abx at 90% healed/started full Cowden protocol
Aug '15 still at 90% -started transition to Buhner's full BBB protocols
Aug '16 99% healed - started modified Buhner protocol

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 3/23/2017 6:14 AM (GMT -7)   
If I had to guess, it sounds like Bartonella is what's plaguing you at the moment. Houttuynia alone is not enough to deal with this infection though, you will need to be on the full protocol for that infection as well.

I would second - or is that third or fourth?? - the idea of consulting with a Buhner herbalist! While I have not done this myself, I keep hearing really good things about them.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Nab
New Member


Date Joined Nov 2017
Total Posts : 8
   Posted 12/6/2017 10:54 AM (GMT -7)   
Evian Angel could you let us know how you are doing ? Your story matches exactly mine !

I must also mention it is not just "lyme" what we are after. I am a scientist and my research shows that it is yet an "undetectable retrovirus" that triggers an immune dysfunction enabling normally harmless pathogens to develop infections in the body. You must make your immune system robust and address all possible infections.

Post Edited (Nab) : 12/6/2017 11:57:03 AM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27969
   Posted 12/6/2017 12:39 PM (GMT -7)   
Nab - EvianAngel hasn't been on the forum since May of this year...so not likely she will see your post.

She does have her email enabled though..you could send her one...
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

evianangel
Regular Member


Date Joined Jan 2016
Total Posts : 418
   Posted 12/6/2017 4:54 PM (GMT -7)   
Hello everyone, and Nab welcome!
I saw this notification on my email. It's been a while, but I thought I'd update you with my progress.

I was on the buhner protocol for probably close to two years. Finishing my last year off with the powdered herbs from 1st Chinese herbs. I made my own capsules. I followed buhners basic protocol for Lyme. As well as a few other support herbs. I eventually worked my way up to his full dose, which on some days amounted to 40 plus capsules.

However I'm pleased to say now I've weaned off all herbs and I no longer suffer the Lyme symptoms I used to.
For the most part I feel better. Like my old self.
However I still have some residual damage to my body, my jaw clicks a lot, sometimes my neck will creak. But I am pretty well overall.

I also started to incorporate exercise into my weekly routine, cardio and weight resistance exercises. I feel this was crucial in the end to my recovery as well.

There is a light at the end of the tunnel, for those dark two years I never thought there would be, but I think if you can find something that works well for you and stick to it there is always hope.

I think the exercise helped my immune system, as well as buhners herbs did wonders for me. Although the first year on them was very rocky.

All the best to all of you Lyme warriors.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27969
   Posted 12/6/2017 5:22 PM (GMT -7)   
Hey evianangel - good to hear from you! smile


So happy for you that you are well!!!


Thank you so much for coming back to post - this is wonderful news...and gives members hope that remission IS possible - we just have to persevere with treatment.
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

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 1342
   Posted 12/6/2017 5:29 PM (GMT -7)   
Hi and thank you so much for sharing your update and success story.

I am also using Buhner herbals and your story is so encouraging and has given me more hope that I will someday be better.


Take care and enjoy your life, so very happy for you.
Sincerely, Jo

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 503
   Posted 12/6/2017 6:55 PM (GMT -7)   
evianangel said...
Hello everyone, and Nab welcome!
I saw this notification on my email. It's been a while, but I thought I'd update you with my progress.

I was on the buhner protocol for probably close to two years. Finishing my last year off with the powdered herbs from 1st Chinese herbs. I made my own capsules. I followed buhners basic protocol for Lyme. As well as a few other support herbs. I eventually worked my way up to his full dose, which on some days amounted to 40 plus capsules.

However I'm pleased to say now I've weaned off all herbs and I no longer suffer the Lyme symptoms I used to.
For the most part I feel better. Like my old self.
However I still have some residual damage to my body, my jaw clicks a lot, sometimes my neck will creak. But I am pretty well overall.

I also started to incorporate exercise into my weekly routine, cardio and weight resistance exercises. I feel this was crucial in the end to my recovery as well.

There is a light at the end of the tunnel, for those dark two years I never thought there would be, but I think if you can find something that works well for you and stick to it there is always hope.

I think the exercise helped my immune system, as well as buhners herbs did wonders for me. Although the first year on them was very rocky.

All the best to all of you Lyme warriors.


Evianangel,

THANK YOU sooo very much for posting this update. This really gives me hope. I started Buhner's protocol in June, and while I've had some improvements and have some good days here and there, I have a hard time believing there's any hope for me to ever feel truly normal. Frankly I'm not sure I even know what normal feels like. I've had life altering symptoms for the past 8 years and have had signs of bart and babs since early childhood, so I've had these infections pretty much my whole life. I'm 47 now.

Thank you for being candid about your experience. This helps a lot. I'm sure it will take me over a year of steady treatment, too. Most of the time I feel like I'm just treading water. I'm so ready to get closer to the shoreline where my feet touch the bottom and I stop feeling like I'm in danger of drowning.

evianangel
Regular Member


Date Joined Jan 2016
Total Posts : 418
   Posted 12/6/2017 8:13 PM (GMT -7)   
Goshawk and walkingbyfaith, your welcome I know there were times when I wished I was dead everyday because of the terrible symptoms I experienced, but here I am now sometimes with herbs and really any Lyme treatment, it takes time and persistence I find. I truly am praying for the best for both of you and health and happiness in your future.
Symptoms of Lyme Disease started in Nov 2015
Diagnosed by ND & Igenex Test March 2016
Started Buhner's Protocol May 2016
60% Better August 2016

artermix
Veteran Member


Date Joined Aug 2016
Total Posts : 1228
   Posted 12/7/2017 2:57 PM (GMT -7)   
Greetings.
I have not been on this web site for over a year but in support of my dear friend Evianangel I would like to add on my testimonial on the Buhner herbs and my progress as well.
Having a "lyme buddy" to communicate and share ideas, frustrations and feelings on a daily base was also part of my protocol of getting better. Evian and I shared protocol ideas and gave feedback to each others day after day. At times the support we gave each others was just as beneficial as the herbs.

I was on Buhner Lyme protocol (neuro-borreliosis protocol) for 11.5 months. I took very high doses 4 times a day then decreased to 3 times a day because of cost. To give you an idea of how high was the dosage I was taking....several tablespoons full each day. I would go through a 1lb powder bag from 1stChineseherbs.com every 20 to 30 days. I took an average of 70 to 80 capsules a day (type "00") that I filled myself with custom blend. I followed the Buhner Lyme book to the letter but went far beyond the dosages suggested by Buhner and pushed dosages at high doses like in Chinese medicine.
My dosage of herb powder was 9000 mg to 11000 mg a day. I also did not to go slow as suggested by many on this site. I tried a lot of supplements and still take many supplements as well. Some worked some did not.
I took stevia for 10 months. Did not do a thing but helped reduce the sugar intake.
For me to notice the benefits of the herbal Buhner protocol it took a long time. I was focusing only on lyme, and I did treat other infections but never had signs of herxes.... I want to say that results came in about 7 months. Then from there it was a little bit of a roller coaster with many lows. By May I was 80% better but still unable to get out to go running every day and going to the gym consistently. I still was on the 2 miles a week run and still having bad days 30% of times
I decided to try the Willy Wiegman protocol and begun also to take bitter Apricot Kernel supplementation. The Apricot kernels contain cyanid and definitely boosted my immune system. I still take 40-50 mg of apricot every day.
Willy Wiegman protocol abx combination (pulsed), helped me get over a hump I could not get over with Buhner. This is because, as I found out, my main infection was never lyme, but bartonella. It is in fact possible that by the time I got to the abx protocol my lyme was in remission. I think Bartonella instead had been my main infection all along without that tell tale signs (except pain under the sole of one of my foot). I probably had it before lyme. But did not show on test since Bartonella CDC test is for 2 strains. I also had mycoplasma which has been resolved now.
I am currently on Bartonella Buhner protocol. My symptoms are very mild and random at the moment and I have been treating Bart since July.

I am back to running 10 to 15 miles a week and going to the gym. I am hoping to feel well enough to get ready for Vancouver marathon (or half marathon) in May, and hopefully meet my friend Evenangel. smile

Going back to regularly exercise (but not 100% like before lyme) was for me another milestone. I take very high doses of vitamin B3 Niacin (4000mg ) to help me detox, every time I go running.
Exercise helps me definitely to get my immune system to fight these infections.

My protocol was 80% Herbal and 20% abx (I never done abx more than 30 days).
I did also a parasite cleanse with Invermicin and constantly and consistently fast. These things work for me but might not work for you.
Some curious fact, after doing the Willy Wiegman protocol I regained some eyesight. Meaning I needed glasses to txt on phone but now I do not.

I hope this can give hope to some of you.

Do not be scared to try new stuff. I did not discriminate and I tried many things. I did not listen to what others told me to do, if something just did not feel right. I also took risk. You need to stay on herbal protocol for a long time if you choose this road. Consistency is the key, like for everything else. I have been treating for 18 months and never stayed away from more than 36 hours without treating.

I can consider myself 95% -99% improved in a year.

Best of luck.

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 1342
   Posted 12/7/2017 4:15 PM (GMT -7)   
Thank you so very much for posting. These encouraging pots will help so many that are struggling today.

Take care and I wish you the best of continued healing and success, Jo
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 18, 2017 9:47 AM (GMT -7)
There are a total of 2,906,739 posts in 318,991 threads.
View Active Threads


Who's Online
This forum has 158335 registered members. Please welcome our newest member, Makas.
347 Guest(s), 6 Registered Member(s) are currently online.  Details
Rick1310, PeppermintTea, Spring, EruditePaul, FamilyGuy, RocketMan12