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» LymeNet Flash » Questions and Discussion » Medical Questions » New to LymeNet

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Author Topic: New to LymeNet
Member # 42689

Icon 1 posted      Profile for Scholzie22     Send New Private Message       Edit/Delete Post   Reply With Quote 

I am new to the website. I am not sure how long I have had Lyme disease but I recently was diagnosed about 3 months ago after 3 years of not feeling right. My current treatment is as follows:

Samento (30 drops daily)
Banderol (30 drops daily)

NAC 1200 MG twice daily
VSL #3 one half 900 billion uniys twice daily
Nattokinase 100 MG once daily
Zinc 30 MG once daily
Saccharomyces boulardii once daily
Garlic soft gel 1000 MG once daily

I also take Coconut oil daily as well as homemade Kefir daily.

My Questions:

1. How do I know that treatment is actually working?
2. If treatment is working, how long until I am well again?
3. Will the anxiety, depression, and mind set get better with treatment?
4. Is there anything else I can do to speed up the recovery process?
5. Is it safe to take adderall? Seems to be the only thing that seems to give me energy.
6.Will my testosterone levels (300-350) return once treatment ends.
FYI: I am 25 year old male

I hope this post wasn't too long if so I will break up my questions into smaller posts.

** edited to remove dosages - **

[ 11-08-2013, 08:48 AM: Message edited by: sixgoofykids ]

Posts: 15 | From Syracuse, NY | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
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Icon 1 posted      Profile for BoxerMom     Send New Private Message       Edit/Delete Post   Reply With Quote 
That's a great treatment plan.

1. You may herx (symptoms get worse and/or new ones appear) or feel better on meds. Both are signs that treatment is working.

2. We are all different. For three years of illness, plan on at least nine months of treatment. It could go much longer, though. We usually treat until symptom-free on meds for 2-3 months, then a med-free trial to see if we relapse. Some switch to just herbs for maintenance.

3. See number one. It does eventually go away.

4. Yes! Eat well. No inflammatory foods. No sugar. Many of us need to avoid wheat and/or dairy. Your body will tell you or you can have testing.

Exercise regularly, but not much cardio unless you are still in really good physical conditioning. Lifting light weights every other day is a powerful immune regulator.

Detox. Drink lemon water. Take Alka Seltzer Gold. These alkalize the tissues. Take chlorella or activated charcoal away from meds. Sauna, especially infrared.

Learn about Lyme and co-infections.

5. I know many Lyme patients on Adderall. We take the meds we need to function and get through treatment.

6. Yes, your endocrine system will recover. Testosterone will return to normal. You can ask your doc to supplement in the meantime.

Welcome to LymeNet!

 - Must...find...BRAIN!!!

Posts: 2867 | From Pacific NW | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
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I've been well for a long time and a bit out -of -touch with treatment protocols so I won't comment but I'm sure others will be by to offer suggestions.

Of course, I do want to welcome you to LymeNet! [Smile]

Posts: 5187 | From Lyme Zone | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
Member # 743

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Very good plan! Welcome! [Smile]

Lots of lyme info:;f=1;t=088555;p=0

Opinions, not medical advice!

Posts: 95737 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Think about restoring health, not only killing bacteria, that's the key to recovery. Be sure to exercise .... not cardio, but something you like. Exercise is a big key to recovery .... I have been well for 4 years after being disabled by Lyme and for a long time I think it was the Pilates that kept me healthy.


Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
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Did you read Dr. B>

Everything I say is just my opinion!

Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
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1. For me although I did herx during Abx treatment, it was hard seeing improvements from one month to another - but when I stopped and looked backwards over the course of several months I could definitely see the changes for the better!

2. Like mentioned above - it is different for everyone and it can take some time and you may need to sort through different approaches

3. Oh yes - it might not seem like it day to day, but over time you can see the changes.

4. Regular sleep, exercise and diet - like BoxerMom mentioned above try a non-inflammatory diet. I have been treating lyme for a couple of years and have plateaued and experienced some relapses

I went on an elimination diet about a month ago and while introducing new foods back, I have stayed away from any grains (wheat, etc), soy, dairy, legumes - I have felt better than I have in a long while - so I am convince that my diet has been causing some issues.

5. Don't have any experience, but as above I think a fair amount of lymies take it and are okay.

6. Yes - I think when lyme is under control you will find you testosterone bouncing back

Prayers and thought for you - LS

Posts: 118 | From New England | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
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Welcome to Lymenet. It looks like you are seeing a good doctor and that is half the battle. It takes time so don't be too impatient. You have to be on a very good diet. Besides no sugar, no refined processed food - no alcohol.

Be sure to take a very good probiotic, the kind that you refrigerate, and eat foods that are low on the glycemic index to protect yourself against yeast.

Almost everyone has multiple infections, which all require different abx. I had 5 infection I know of, and each one took about a year to treat. It might have gone faster if I had been aware of when one went into remission and another came to the surface. Symptoms can overlap so sometimes it is hard to tell.

If I were doing this all over again, I would get tested for protomyxzoa Rheumatica sooner rather than later because it requires a low fat vegan diet. Coconut oil would send it into overdrive. If you don't have it, great. If you do, it builds bio-film that the pathogens use to protect themselves. This makes treatment much more difficult. It multiplies 100 times faster with lipids so you have to keep your fat to 15 grams a day.

Many people do not recover until they finally address PR, so it is a good idea to know up front if you have it or not.

Look up 23&ME online. It is DNA testing that costs about $100. You can download your results onto another site and get your methyl cycle mutations as well as a detox panel. This will give you tremendous insight into specific supplements that will help you detox better.

You will know your treatment is working if you herx - that is when the abx is hitting the pathogens causing massive die off- releasing a lot of toxins. You will also know if your treatment is working if you steadily get better. If you don't get better or just reach a plateau, chances are you need to change meds. Expect to go through an arsenal of medications.

Borellia usually flares every 28 days or so and you will feel much worse during this time. When you stop having those flares, another infection will probably dominate like babesia or bartonella. Keep track of your symptoms so you notice when those changes occur. A lot of people treat 2-3 infections at once. I couldn't tolerate that.

old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
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Welcome aboard! [group hug]

'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

Posts: 2607 | From Hooterville | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator

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