I live in the Houston area, so LLMD are few and far between. So, I found help through a MD in my area. She treated me through high school and college. I quit going as an adult. I was very close to being dx with MS, but I also was having ALS symptoms as well. She called me a "yellow canary" b/c my body is not detoxing like it should. Which I am sure is the case w/ so many of us. She felt that abx would not help at this point do to my toxic overload. I cannot believe how I feel only after five days!! Here is what I am doing:
1. Removed amalgams last Wed.
2. Started taking Cats Claw (again) but Allergy Research Group brand. The Dr. felt like this brand was very good. I take 2 in the am and 2 in the pm. Then after 2 weeks 2 three times per day.
3. Alpha Lipoic Acid - 100mg once per day for now
4. Fish Oil. Must have 2,000 mg of EPA and DHA. The liquid is best so you do not have to take 20 pills. I take 2 tablespoons twice daily.
5. Vit. B
Here is what happened:
1. I had severe depression and my antideps. were not helping. The fish oil is supposed to help this for some reason. It has!!!!
2. Pain in neck, shoulders and skull has b/c so much better!! When I sleep at night a lot less cramping and stiffness. I have slept like a baby. I am on Lyrica too, but when it wears off the pain is minimal.
3. My walking is getting better. After sleeping, my joints are popping and loosening up. This am my stiff right leg feels loose! I could feel it when I walked!! It feels like Jell-O compared to my stiff left knee.
4. The only herx that I have experienced is the achy, flu feeling but very slight and slight fatigue.
5. I have not felt crazy neuro. sensations in two days!
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
All the big players...antioxidants...plus lowering glucose...
and the B vitamins...a complex which contains choline, yes? ;-) YEA!
The liver is taking a big hit, from ethanol (Bb ferments sugar) as well as a phosphorus (Bb needs to make its own ATP) and choline (what Bb actually wants) loss = fatty liver.
Getting the liver healthy is really, really important to help us to fight. It has huge stores of Mg and some B6.
Probiotics?
Did you TEST high in the heavy metals? What are you chelating? With what?
Interesting approach...your list of supplements!
It is good to see that other approaches work/indeed help.
Ones that, IMO, are safer.
Very happy to hear you are improving!!!
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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posted
I tested very high for mercury. I have not started chelation, yet. My appointment will be next week so I can report back then. My Dr. said that if I get too ill we can use hummus? Something about the moss in the chickpeas? I know this sounds so bizzare, but I am very hopeful after these last few days.
This Dr. is doing a lot of work with kids w/ autism. She has had some unreal results. What is key is to follow the regiment. She is big on building the body up before treatment. She believe a lot of my problems are do to genetic defects.
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
I CANNOT BELIEVE not one other person on this board has replied to this post!
Here someone has stepped forward to tell you about somethings that do indeed seem to be helping...
a LOT.
And no one responds except me.
Maybe only WHEN they take away your antibiotics will you begin to explore the "alternative" routes.
Bb and mycoplasm are UNLIKE ANY OTHER PATHOGEN.
We have to think "outside the box".
You are ALREADY very toxic...metabolic acidosis.
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
LED,
I'm really glad this protocol has been working so well for you. I'm grateful you posted it and wish you continued success.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Great going! Big change for just a few supplements! I have used those all along, except for cat's claw, although I did have that as part of a ND protocol for six months. I now use it in between pulses (working on bart).
I really believe that in my case, the herbs/supplements are the fine tuners and body builders/repairers once the Big Bombs (abx) have done their knockdown.
And greater improvement with chelation, I'll bet!
I would really love to hear more about the hummus, purpose, effectiveness, etc. A food dip sure beats swallowing another pill!
N.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Well, I have tried to reply, but keep losing it into Cyberspace!
I have taken nothing but herbs and supplements, including Samento, the TOA free, liquid form of Cat's Claw. I am allergic to the ABX. I've been on herbs for 3 years, after 21 yrs. of misdiagnosis.
I also require Armour Thyroid and DHEA in order to function with enough energy.
Congrats on your success, and I hope it continues. Please keep us posted.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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I'm holding onto your program so I can try some of the ideas.
do you know if you ahve co-infections?
Julia
Posts: 208 | From Santa Fe | Registered: May 2006
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JimBoB
Unregistered
posted
Isn't it GREAT to feel BETTER. I have been trying to tell people on this board that for many months. Only a few listened, and SOME are doing much better now too.
As most of you know, I too quit abx back in February.
I have now quit cats claw for about a week. Want to try that for a month or so and see what happens with my other stuff. I am going to try Coptis again too, soon, I hope. Just to see IF I can handle it or not, now that I have made some changes and gotten rid of the "hot" herbs too.
Keep it up, and the rest of you too, who have been trying the herbs of late.
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Fish oil is a wonderful anti-inflammatory and very heart-healthy, too, so you're doing great things for your brain, joints, heart, etc. even with just that one supplement.
By the way, did you MD use any of the newest genetic tests to assess your detoxification abilities, such as the DetoxiGenomic profile from Genova? This is becoming discussed quite a bit more lately especially in the Chronic Fatigue Syndrome and Autism circles, regarding genetic defects in some people that may be hindering their ability for the liver to detoxify properly.
Congratulations on the good progress. Please keep us posted.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
LED,
I hope your success continues!
Do you know what is helping reduce the pain and stiffness in your neck and back?
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Your post inspires me. I am so happy I ran across it.
I just had a lot of blood work done and am thinking of trying Cats Claw, Burbur before using antibiotics again.
I do have a question~~ If I have a bad reaction to fish, will I have it to fish oil? I cannot keep fresh water fish down, it's not really that I am "allergic" it just comes right back up.~YUCKY~ I can eat tuna, salmon, shell fish and I am OK. hmmm
Anyway, thanks for sharing. M
Posts: 106 | From Texas | Registered: Jun 2005
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posted
This might end up being recognized as a necessity in all chronic cases.
Detoxify, rebuild, and clear eliminative organs before treating the infections, as treatment further burdens the system. A clear system also works om the job much more efficiently in and of itself.
I'm glad to hear an MD is thinking in this manner. It's along the idea all old school Docs operated (before big pharma).
Does she have you paying attention to co,on. GB and kidneys as well?
Best, Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
Marnie, I read this post a few times, waiting to see if you might announce the answer to your cliffhanger question earlier -- What kind of acid is Bb after?
Posts: 172 | Registered: Dec 2003
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I'm also giving up on abx. After 3 years of them my colon & liver can't handle them.
I'm taking the same supps as you, with a few more, & my cat's claw is Biopure. I've begun to feel like I'm relapsing the past 3 days, though -- vibrations in my brain stem are starting to concern me because I haven't had those since I was very sick. So I need encouragement. Any updates about how you're doing & what you add will be very appreciated.
I'm also interested in more about what hummus does.
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Hi Julia, I am not sure if your question was for me or not, but my post was right before you asked, so I will answer.
I have tested negative for coinfections twice, but suspect I have Bart. Samento should treat Bart, and I have had major improvement in the soreness of the soles of my feet. It is almost gone now.
- - - - - - - - - - Hi Fogged Up, Try Neptune Krill Oil instead of fish oil. It is better anyway. It comes in sofgels that you can take with meals, one twice daily, and does not cause that burping back up stuff like fish oil, or at least not for me anyway.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hooray! Expect some ups and downs. This bacteria doesn't give up easily.
Just like abx, it takes different combos for different people. Unlike abx, most natural protocols are not harming you.
Watch your diet and your PH balance too.
Good luck.
Tempe: I hope your setback proves to be minor and short in duration. I think the cyclical factor applies whether you use abx or otherwise.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
This is a good thread. It is very important to build yourself up before treating the infections, if you have CHRONIC Lyme. I was extremely ill and run-down when I first started Samento and I felt incredibly ill and ended up in hospital. I was so exhausted and felt like I was dying.
My LLMD decided to build my body and immune system up then put me on normal antibiotics. For about 6 weeks I have been on loads of supplements including everything you mentioned, and more... I noticed a massive difference and I started the antibiotics 2 weeks ago. I had a herx after 3 days for about 5 days but the herx was not too bad at all and I now feel pretty good, but I expect I will herx again on week 3 or 4. I strongly believe building my body up before treatment was one of the most important things.
Posts: 263 | From UK | Registered: Mar 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
4. Fish Oil. Must have 2,000 mg of EPA and DHA
Is this 2000mg of EPA and 2000mg of DHA or just 2000mg combined epa&dha?
And how many mg's of Alpha Lipoic Acid ?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
That's wonderful that you have found some success. I hope I can do the same now that I have gotten past my heart surgery and seem to be recovering from the resultant infections.
I also stopped my abx and I'm taking the same supplements you are.
Can you tell me how you get tested for heavy metals and what kind of chelation you are doing?
Thanks!
Posts: 34 | From New York State | Registered: Oct 2005
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posted
How much vitamin B? I have been taking 2 B-100 complex pills daily, but I have no idea if that is too much or too little. Greg
Posts: 17 | From Ventura, CA | Registered: May 2006
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posted
I think Dr. B recommends one 50mg Vitamin B-Complex tablet.
Posts: 263 | From UK | Registered: Mar 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Great post, LED - thanks very much for sharing.
I love it when I read that people are being helped with treatments besides abx. It gives me hope, and I think it confirms that there may be many successful, non-medical approaches to this disease complex.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Sorry that I have not responded to all of these wonderful posts . . .I have been out-of-pocket. As far as the chelation/hummas thing, I do not know how this will all work. I will go mid-August to find out what I'll do to get the mercury out.
Overall, this treatment is helping. I had one wonderful day where I had no complaints. So far, I will have one GREAT day and then four bad. Man that GREAT day was awesome!! But it sucked when the need day I was back to crap-olla. I am remaining optimistic b/c it has been so long since I had even one.
This fish oil is totally gross, but tolerable. Dr. wants atleast 1,000 of each EPA,DHA for two weeks then 2,000.
I really do not know what one thing is helping. I noticed that (Allergy Research )cat claw is helping. I took this last year and had some good results then took another brand and it did nothing. The Dr. agreed that Allergy R. brand is what I need to be on.
Most notible improvement is the stiff neck and pain is getting better. Still have slight pain but not bad.
Last two days my scary numbness in my head and spine returned . . .but hoping this is just cycling through?
I am going to do a neurotransmitter test. Not really sure what this shows.
Thank you for all of the encouragement, open-mindness and help!
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