Really trying to hold on to some hope

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dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1484
   Posted 10/5/2017 5:59 PM (GMT -6)   
My ALS-like symptoms are worsening. Twitching, wasting, muscle weakness. Then other neuro symptoms are still at play like moving nerve pain, numbness and tingling.

it's the ALS like symptoms that are really scaring me. So much so that I am going to see a neurologist. Though it wouldn't solve the problem it would be absolutely wonderful if it can be officially ruled out.

My logical side of my brain says it's lyme since these are also common lyme symptoms, so much so it can mimick ALS and many people are even mis-diagnosed with it. Also, the fact I've experienced all these symptoms before in the 2 years of lyme.

However the other side of my brain is louder right now.

I started treating again in mid July. With doxy. Then at the end of August added full Buhner protocols with doxy. Then later in September introduce Flagyl with the doxy and herbal protocol. So I've been treating for almost 3 months, however only a few weeks with the Doxy-Flagyl-herb combo and perhaps I should be more patient.

But when one's ALS like symptoms continue to happen and get worse despite treatment it's very, very discouraging.

Ruling out ALS is wonderful of course but I will still be at square one. It can feel hopeless to feel that nothing I'm doing is helping. I didn't expect to see great improvement already but at the very least for symptoms to not worsen.

How long will I keep deteriorating? Can my body bounce back? All questions that I don't know the answers too and it's not looking very good.

In the 2 years of lyme I always had hope to hold on too, but this time around I'm losing it.

I'm not even feeling "sorry" for myself, like poor me or why me, I just wish I knew what I can do that will actually help.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

Post Edited (dacarte3) : 10/5/2017 6:06:03 PM (GMT-6)


k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2011
   Posted 10/5/2017 6:19 PM (GMT -6)   
Sorry dacarte. I am familiar with this downslide as I have a family member going through it. The only knowledge I can share was in Yolanda's new book the fellow with ALS she is helping had lyme and mercury toxicity. I know everyone is different, but is mercury sonething you explored?

Lapis_29
Regular Member


Date Joined Sep 2017
Total Posts : 183
   Posted 10/5/2017 6:22 PM (GMT -6)   
I post about the incredible healing abilities of DMSO here all the time and quite frankly I dont think anyone really believes me. IT is basically saving my life.

yes, it can cause skin irritation and a sense of buring for a short while, big deal. its worth it. When you add in topical B12, its even more amazing.

what do you have to lose?

http://www.healingwell.com/community/default.aspx?f=30&m=3914807

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1484
   Posted 10/5/2017 6:44 PM (GMT -6)   
k07 said...
Sorry dacarte. I am familiar with this downslide as I have a family member going through it. The only knowledge I can share was in Yolanda's new book the fellow with ALS she is helping had lyme and mercury toxicity. I know everyone is different, but is mercury sonething you explored?


Does you family member have "real" ALS or lyme?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26262
   Posted 10/5/2017 7:12 PM (GMT -6)   
Dacarte - at one point you were almost symptom free after some time treating, right?

If that is the case, then you should be able to get there again.
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

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1484
   Posted 10/5/2017 7:40 PM (GMT -6)   
Girlie said...
Dacarte - at one point you were almost symptom free after some time treating, right?

If that is the case, then you should be able to get there again.


Oh boy I really really want to believe that.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26262
   Posted 10/5/2017 8:31 PM (GMT -6)   
dacarte3 said...
Girlie said...
Dacarte - at one point you were almost symptom free after some time treating, right?

If that is the case, then you should be able to get there again.


Oh boy I really really want to believe that.


You stopped treatment and relapsed, right? You weren't on treatment when the symptoms returned?
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

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1484
   Posted 10/5/2017 8:41 PM (GMT -6)   
Girlie said...
dacarte3 said...
Girlie said...
Dacarte - at one point you were almost symptom free after some time treating, right?

If that is the case, then you should be able to get there again.


Oh boy I really really want to believe that.


You stopped treatment and relapsed, right? You weren't on treatment when the symptoms returned?


Stop making sense.

I'm just scared, so logic is not winning right now. These symptoms are scary. Something very not right is happening to me right now. VERY not right that it's hard to think this is just lyme.

I will gladly take all the other lyme symptoms back to have this one go away.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26262
   Posted 10/5/2017 8:45 PM (GMT -6)   
Hey - I don't ever listen to myself...when I'm feeling crummy my thinking gets all messed up...and i start to worry.

Did you treat lyme, and Bart...and Babesia first time around?
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

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1484
   Posted 10/5/2017 9:10 PM (GMT -6)   
Girlie said...
Hey - I don't ever listen to myself...when I'm feeling crummy my thinking gets all messed up...and i start to worry.

Did you treat lyme, and Bart...and Babesia first time around?


I did doxy and a bunch of herbs the first time.

I actually took a different approach, where I used Buhner's natural antibiotics book and made a customized protocol. This time I'm doing the pre-made ones.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26262
   Posted 10/5/2017 11:59 PM (GMT -6)   
So you're going to do Buhner's protocols for each infection this time?
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

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2011
   Posted 10/6/2017 4:47 AM (GMT -6)   
dacarte3 said...
k07 said...
Sorry dacarte. I am familiar with this downslide as I have a family member going through it. The only knowledge I can share was in Yolanda's new book the fellow with ALS she is helping had lyme and mercury toxicity. I know everyone is different, but is mercury sonething you explored?


Does you family member have "real" ALS or lyme?


Early on was neg for als. Did have bulls eye with tick bite. I am not sure what constitutes real ALS. I think it could just be a manifestation of a combination of factors. Probably genetic disposition to go that direction. My direction seems more MS. But I don't appear to have mercury toxicity (urine/blood testing, amalgams removed 10 yrs ago). This person does have amalgams.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2011
   Posted 10/6/2017 4:51 AM (GMT -6)   
Also, if you got better the first time you can do it again! Did you have similar symptoms first go round? Maybe the herbs you are using this time are not as effective for you. I would consider trying to do what worked first time.

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1063
   Posted 10/6/2017 6:05 AM (GMT -6)   
- dacarte3 you have positive igenex test. why do you keep on talking about ALS ? I understand people that dont have a positive westernblot can think they might have that, but i dont see why you do ?

- flagyl used alone is a poor choice for a cyst buster will lead you nowhere, you need very hi doses to see any progress, based on the MIC of the drug. I used 1500gr (tinidazole) for 6 months and did not feel much of a difference.

- Where is your intracellular protocol to tackle bart and myco ? It is known doxy alone does not treat intracellular proteobacteria, you need double or triple intracellular regimens.

- i tried herbs for 2.5 years and i relapsed badly, with a lot of neuro issues. I dont believe herbs work as first line treatment any more. Sorry but i think there are too many variables around to play with herbs. Herb source, herb potency, herb quality, the amount of rain in that season, etc.... Chances are you are either using too little herb or a herb that does not work well. You can use herbs with abx or herbs post abx treatment to keep you from relapsing, but i believe abx are very important for people that are very sick and even Stephen Buhner recommends antibiotics for severe neuro issues.
buhnerhealinglyme.com/symptoms/severe-derealization/

- do you have a lyme doctor ?

- my suspicion with your condition is you have untreated bartonella or mycoplasma, or both.

After 2.5yrs of playing around with herbs, I was put one month ago on rifampin+mino+azithro. In a matter of 2 weeks all my eye symptoms vanished and half of my brain fog was gone. This was BEFORE i started mino, so just on zithromax+rifampin. That is tell tale bartonella.

One month in, and my brain is almost brain fog free ! The difference is enormous. Knock on wood that it will not come back, we will have to see what happens in a few months time...

Please dont stay like this and ask yourself the ALS/MS question over and over again while you play with herbs that may or may not do much. Get started on multiple intracellular antibiotics ASAP, especially with your positive tests for the bugs.

cr3ativegirl
Veteran Member


Date Joined Oct 2015
Total Posts : 633
   Posted 10/6/2017 7:49 AM (GMT -6)   
dacarte3 - I totally get thinking about ALS. While most/almost all of my symptoms have resolved after 2 years of treatment, I have the same symptoms as you do left over. It is so hard not to go down that barrel of thoughts. Every time I get a muscle cramp, or nerve pain, I think omg ALS. I mean, why would the nerve pain and muscle stuff continue to worsen while everything else resolves. I have a fun new thing where I find myself clenching my right hand. I can't spell either. Now I'm thinking Parkinson's. I do question whether this can continue to progress to ALS/MS, etc ....hope not.

I was pretty much symptom free (only vibrating at night) and now I am hitting biofilms hard (Biocidin) as a final treatment and I am flaring big time. I scanned myself with the EDS machine and Bartonella and Candida came up, but no Lyme or Babesia. I went to my doctor and he said herbs would not be enough, to hit it with Rifampin. I did Rifampin two years ago and it went away. I guess it was hiding in the biofilms and got released.

So, I'm with you on the catastrophic thinking. I've done a lot of mental retraining and I have to do my breathing, shift my thoughts, etc. But, I've noticed Bartonella hijacks my zen self. Suddenly, I'm all amped up and antsy and aggressive.

I'm beginning to shift my thinking that this condition is more like Aids, keeping it under control, rather than completely healing. I decided to have my doctor do a serious of inflammatory marker labs to see how what my chronic inflammation is, because my reactions to my LDI shots have gotten way worse, rather than better. That has confused him big time. I'm going to do an update soon.

Hang in there. Be grateful for the day....
Oct 2015 Dx Lyme, Candida, Mold, Toxic Metals
Nov 2015 Dx Bart, Bacillus, Histo, Aspergillus, Mucor, Trichophyton, and Mycotoxin. Doxy & DesBios remedies
Jan 2016 Minocycline pulse/ Nystatin, Flucanizole
Feb 2016 LDI for Mold, Lyme, EBV, Added Tinidozole, Flucanizole
Sept 2016 Switched to Buhner herbs. @ 90%
January 2017 Plaquenil for Babesia @95%
Feb 2017 Dx Mucor/Mycoplasma in Nervous system.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1484
   Posted 10/6/2017 8:03 AM (GMT -6)   
Girlie said...
So you're going to do Buhner's protocols for each infection this time?


My regiment has been:

1. Doxy
2. Flagyl
3. Japanese Knotweed
4. Cats Claw
5. Andiographis
6. Houttynia
7. Isatis
8. Cordyceps
9. Chinese Skull Cap
10. Rhodiola
11. schisandra
12. eleutherococcus
13. Ashwagandha
14. Chaga Mushrooms
15. Milk thistle
16. NAC
17. Vitamin D3 and E
18. Zinc

So I've been treating my a** off.

I don't take all of these herbs at the same time. There's about a week gap of rotation. So half I'm not doing for a week and the other half I'm not doing the following next week.

I do this because, one, I can't take 15 herbs at once and, two, budget and the schedule of when herbs are re-ordered and when they arrive.

So this is mainly lyme and mycoplasma protocols but many of the herbs cross over to babs and/or bart.

I would have to pick up:

1. EGCG
2. L-Arginine (however a supplement I'm taking as a good amount of this already)
3. Sida
4. red root
5. Hawthorn
6. alcornea
7. Bidens
8. artemisinin
9. panax
10. licorice
11. cryptolepis

I mean it would just get ridiculous. That would be 25+ herbs.

So what I could probably do is pick up Crypto since that is the "main" Babesia herb and then I'm also a fan of Hawthorn.

Because I can't afford 25+ herbs (plus everything else) and have the ability to take 25+ herbs. It's just not sustainable.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1484
   Posted 10/6/2017 8:14 AM (GMT -6)   
k07 said...
I am not sure what constitutes real ALS. I think it could just be a manifestation of a combination of factors. Probably genetic disposition to go that direction. My direction seems more MS. But I don't appear to have mercury toxicity (urine/blood testing, amalgams removed 10 yrs ago). This person does have amalgams.


Yes, learning more about both ALS and MS, I see I fit more inline with MS as well.

Also I share the same thought process k07. What is "real" ALS? It's a great question.

If lyme is causing the same CNS damage in which causes ALS symptoms, at what point does it become one in the same? At what point are there so many "like" symptoms that in the end isn't it is what it is and no longer simply "like" it?

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1484
   Posted 10/6/2017 8:26 AM (GMT -6)   
cr3ativegirl said...
dacarte3 - I totally get thinking about ALS. While most/almost all of my symptoms have resolved after 2 years of treatment, I have the same symptoms as you do left over. It is so hard not to go down that barrel of thoughts. Every time I get a muscle cramp, or nerve pain, I think omg ALS. I mean, why would the nerve pain and muscle stuff continue to worsen while everything else resolves. I have a fun new thing where I find myself clenching my right hand. I can't spell either. Now I'm thinking Parkinson's. I do question whether this can continue to progress to ALS/MS, etc ....hope not.

I was pretty much symptom free (only vibrating at night) and now I am hitting biofilms hard (Biocidin) as a final treatment and I am flaring big time. I scanned myself with the EDS machine and Bartonella and Candida came up, but no Lyme or Babesia. I went to my doctor and he said herbs would not be enough, to hit it with Rifampin. I did Rifampin two years ago and it went away. I guess it was hiding in the biofilms and got released.

So, I'm with you on the catastrophic thinking. I've done a lot of mental retraining and I have to do my breathing, shift my thoughts, etc. But, I've noticed Bartonella hijacks my zen self. Suddenly, I'm all amped up and antsy and aggressive.

I'm beginning to shift my thinking that this condition is more like Aids, keeping it under control, rather than completely healing. I decided to have my doctor do a serious of inflammatory marker labs to see how what my chronic inflammation is, because my reactions to my LDI shots have gotten way worse, rather than better. That has confused him big time. I'm going to do an update soon.

Hang in there. Be grateful for the day....


Yes Creativegirl,

I'm in the same boat. Why when most of my lyme symptoms are gone the neuro, ALS-like symptoms remain. It's this residual, left over damage.

I've also called chronic lyme the bacterial aids. And I'm fine with a live long situation where I have to "keep it under control". And that's all good and I'm very willing to do that for the rest of my days.

BUT.....what is that? What is that "under control"? I'll very gladly do XYZ for the rest of my life, if that kept it under control.

But what is that.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1484
   Posted 10/6/2017 8:32 AM (GMT -6)   
cr3ativegirl said...
dacarte3 - I I mean, why would the nerve pain and muscle stuff continue to worsen while everything else resolves.


Yes, exactly. Everything else resolved over the last 2 years except this. So this really starts messing with the psyche of "is this still lyme"?

Or even bigger and better question "what really is lyme"?

Lyme is a microbe that causes a butterfly affect. It's probably responsible for SO many ailments. But it doesn't leave a huge foot print. Just a flutter, a ripple that sets off a chain reaction of everything else moving forward.

What really is lyme? (rhetorical)

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1484
   Posted 10/6/2017 8:44 AM (GMT -6)   
mpost said...
- dacarte3 you have positive igenex test. why do you keep on talking about ALS ? I understand people that dont have a positive westernblot can think they might have that, but i dont see why you do ?

- flagyl used alone is a poor choice for a cyst buster will lead you nowhere, you need very hi doses to see any progress, based on the MIC of the drug. I used 1500gr (tinidazole) for 6 months and did not feel much of a difference.

- Where is your intracellular protocol to tackle bart and myco ? It is known doxy alone does not treat intracellular proteobacteria, you need double or triple intracellular regimens.

- i tried herbs for 2.5 years and i relapsed badly, with a lot of neuro issues. I dont believe herbs work as first line treatment any more. Sorry but i think there are too many variables around to play with herbs. Herb source, herb potency, herb quality, the amount of rain in that season, etc.... Chances are you are either using too little herb or a herb that does not work well. You can use herbs with abx or herbs post abx treatment to keep you from relapsing, but i believe abx are very important for people that are very sick and even Stephen Buhner recommends antibiotics for severe neuro issues.
buhnerhealinglyme.com/symptoms/severe-derealization/

- do you have a lyme doctor ?

- my suspicion with your condition is you have untreated bartonella or mycoplasma, or both.

After 2.5yrs of playing around with herbs, I was put one month ago on rifampin+mino+azithro. In a matter of 2 weeks all my eye symptoms vanished and half of my brain fog was gone. This was BEFORE i started mino, so just on zithromax+rifampin. That is tell tale bartonella.

One month in, and my brain is almost brain fog free ! The difference is enormous. Knock on wood that it will not come back, we will have to see what happens in a few months time...

Please dont stay like this and ask yourself the ALS/MS question over and over again while you play with herbs that may or may not do much. Get started on multiple intracellular antibiotics ASAP, especially with your positive tests for the bugs.


And the confusion and frustration of lyme treatment continues.

Why? Why is flagyl a poor choice? Does it not do what it was designed and scientifically observed to do? What evidence shows it's a poor choice? Why are the other choices better? Why do many lymies take flagyl? Why did my LLND recommend it if it's a poor choice?

Why are the other choices better?

Do herbs not really work, despite all of the scientific studies and clinical trials (not to mentioned 1000s of years of human use). Was everything Buhner cited along with his own research and observation bullsh**?

But what about the other side. How ABX don't do XYZ and therefore isn't effective. That it causes XYZ negative affect on the body and therefore makes things "worse". Is that all BS too?

Someone is wrong and someone is right. All these things can't be true at the same time.

I know what is BS, this disease is freaking BS.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 8894
   Posted 10/6/2017 8:46 AM (GMT -6)   
Here is the glass of tinctures I took 3 times a day while treating. Not all at once on the first day!!! I slowly added in each one until I was up to max dose on all of them. It was a process.

1-MC-BB-1 (eventually MC-BB2)
2-Hawthorn
3-Motherwort
4-Japanese Knotweed
5-Red Sage
6-Skullcap
7-Cat's Claw
8-Red Root
9-Fo-Ti
10-Cordyceps
11-Mushroom complex
12-Collagen - liquid (and I did the powder too)
13-Andropgraphis
14-Houttuynia
15-Cryptolepis
16-Tox Ease GL

Then on top of this I took vitamins, astragalus (pill form), CoQ10, Mushroom complex, cinnamon, tumeric, magnesium, garlic in caps, B's, lots of C, Quercitin, Bromelain, D-Limonene, NAC, MSM, Omegas, and I am probably forgetting a few.

Some of the pills were taken 2 times a day and some only once.

My stomach was constantly full of pills and tinctures.

The cost of just the tinctures was about 3 grand for 7 months. But, I had no lab tests. I had no doctor visit co pays and no drug co pays.
____________

Good Article

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 1929
   Posted 10/6/2017 8:47 AM (GMT -6)   
I understand the despair. I was stuck with the last symptoms for Kid#1, and for quite awhile, I was wondering if this was how it was going to be for the rest of his life. But I kept trying, and it took awhile for me to figure out how to resolve the last of his symptoms (trial, lots of error, and a whole lot of luck too). It took several years total of treatment for him (he is a VERY complex case), and he is the best he has ever been. He was doing well for the past couple years, but he's been symptom-free for the past several months.

I understand losing hope and the uncertainity. I have lived this way for a very long time. I'm more hopeful nowadays because of the kids' improvement. But every time we have a serious relapse or step backwards, my hope is certainly questionable.

Hang in there. You CAN do this!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Very sick now despite being treated for years, still very bad
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1484
   Posted 10/6/2017 8:59 AM (GMT -6)   
PeteZa said...
Here is the glass of tinctures I took 3 times a day while treating. Not all at once on the first day!!! I slowly added in each one until I was up to max dose on all of them. It was a process.

1-MC-BB-1 (eventually MC-BB2)
2-Hawthorn
3-Motherwort
4-Japanese Knotweed
5-Red Sage
6-Skullcap
7-Cat's Claw
8-Red Root
9-Fo-Ti
10-Cordyceps
11-Mushroom complex
12-Collagen - liquid (and I did the powder too)
13-Andropgraphis
14-Houttuynia
15-Cryptolepis
16-Tox Ease GL

Then on top of this I took vitamins, astragalus (pill form), CoQ10, Mushroom complex, cinnamon, tumeric, magnesium, garlic in caps, B's, lots of C, Quercitin, Bromelain, D-Limonene, NAC, MSM, Omegas, and I am probably forgetting a few.

Some of the pills were taken 2 times a day and some only once.

My stomach was constantly full of pills and tinctures.

The cost of just the tinctures was about 3 grand for 7 months. But, I had no lab tests. I had no doctor visit co pays and no drug co pays.


Very similar, long list regiment.

How long did you do this comprehensive regiment?

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 1929
   Posted 10/6/2017 9:00 AM (GMT -6)   
mpost said...
- dacarte3 you have positive igenex test. why do you keep on talking about ALS ? I understand people that dont have a positive westernblot can think they might have that, but i dont see why you do ?

- flagyl used alone is a poor choice for a cyst buster will lead you nowhere, you need very hi doses to see any progress, based on the MIC of the drug. I used 1500gr (tinidazole) for 6 months and did not feel much of a difference.

- Where is your intracellular protocol to tackle bart and myco ? It is known doxy alone does not treat intracellular proteobacteria, you need double or triple intracellular regimens.

- i tried herbs for 2.5 years and i relapsed badly, with a lot of neuro issues. I dont believe herbs work as first line treatment any more. Sorry but i think there are too many variables around to play with herbs. Herb source, herb potency, herb quality, the amount of rain in that season, etc.... Chances are you are either using too little herb or a herb that does not work well. You can use herbs with abx or herbs post abx treatment to keep you from relapsing, but i believe abx are very important for people that are very sick and even Stephen Buhner recommends antibiotics for severe neuro issues.
buhnerhealinglyme.com/symptoms/severe-derealization/

- do you have a lyme doctor ?

- my suspicion with your condition is you have untreated bartonella or mycoplasma, or both.

After 2.5yrs of playing around with herbs, I was put one month ago on rifampin+mino+azithro. In a matter of 2 weeks all my eye symptoms vanished and half of my brain fog was gone. This was BEFORE i started mino, so just on zithromax+rifampin. That is tell tale bartonella.

One month in, and my brain is almost brain fog free ! The difference is enormous. Knock on wood that it will not come back, we will have to see what happens in a few months time...

Please dont stay like this and ask yourself the ALS/MS question over and over again while you play with herbs that may or may not do much. Get started on multiple intracellular antibiotics ASAP, especially with your positive tests for the bugs.


I respectfully disagree with some of this. I don't believe abx are the "be all" answer for lyme/etc. Just as you have had herbal failure, we have had abx failure, despite trying for many years (too many!) with a bunch of combinations. (We are not the only ones who have failed with abx.) My experience with long term abx is extremely negative, personally. I have very huge regrets for some of my kids being on so many of those harsh abx with terrible side effects. They clearly failed most of my kids.

In the end, abx did not get Kid#1 well at all. Far from it.
In the end, abx completely failed Kid#2. He was on abx proactively for mild symptoms of lyme for years beforehand, and then he completely tanked despite that and continued to get worse on the abx. I regret his abx usage, as well. And I'm grateful we are no longer on abx for him, as he has slowly been getting better off the abx with herbals and other alternative treatments.
For the Kid#3, he was "under treated" with a single abx for some months, and he responded amazingly well. But he relapses off/on, but he is much better than last year. He has said to me that he feels great and that he feels the lyme is gone now.

After dealing with this for many, many, many years with numerous people in my family affected/treated, I no longer see things black or white. Abx definitely have worked for some people, whereas herbals have worked for others. I definitely, in our situation, do not want to pursue abx treatment at this time, but who knows what the future will bring. (Abx definitely have their time and place!) Abx has severe limitations and some pretty serious side effects, so I speak up about that. Having said that, herbals have their share of concerns to me, as well, but I am very drawn to how they help the body heal and function better (which is a limitation of abx).

My bottom line - I feel people need to do what is best for them. It's always important to remember that what works for one person may or may not work with another (OMG - this is so my kids!).
Best of luck to everybody in finding the treatment that works for them.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Very sick now despite being treated for years, still very bad
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 1929
   Posted 10/6/2017 9:04 AM (GMT -6)   
PeteZa said...
Here is the glass of tinctures I took 3 times a day while treating. Not all at once on the first day!!! I slowly added in each one until I was up to max dose on all of them. It was a process.

1-MC-BB-1 (eventually MC-BB2)
2-Hawthorn
3-Motherwort
4-Japanese Knotweed
5-Red Sage
6-Skullcap
7-Cat's Claw
8-Red Root
9-Fo-Ti
10-Cordyceps
11-Mushroom complex
12-Collagen - liquid (and I did the powder too)
13-Andropgraphis
14-Houttuynia
15-Cryptolepis
16-Tox Ease GL

Then on top of this I took vitamins, astragalus (pill form), CoQ10, Mushroom complex, cinnamon, tumeric, magnesium, garlic in caps, B's, lots of C, Quercitin, Bromelain, D-Limonene, NAC, MSM, Omegas, and I am probably forgetting a few.

Some of the pills were taken 2 times a day and some only once.

My stomach was constantly full of pills and tinctures.

The cost of just the tinctures was about 3 grand for 7 months. But, I had no lab tests. I had no doctor visit co pays and no drug co pays.


The pill thing reminded me about how one of my kids was taking 50 pills a day. It was ridiculous, considering it didn't even help him at the time. My kids sooooo have pill fatigue nowadays. I am beyond thankful that we mostly do tinctures nowadays. I can't imagine ever going back to eating a breakfast of pills again.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Very sick now despite being treated for years, still very bad
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.
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