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» LymeNet Flash » Questions and Discussion » Medical Questions » Need some support :(

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Author Topic: Need some support :(
beths
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After 3 years on abx, a 6 month break then relapse-followed by another 2 years-I am off abx

My LLMD feels I need to stop and let the remaining symptoms go away...

I was feeling pretty good my last month on IV- I stopped to do a yeast clean up (heavy duty diflucan and herbs)
The first 2 weeks were awful. After 4 weeks off abx and finishing up the diflucan, I am starting to get twitches, muscle pain back in my thighs and shoulders. My fatigue is much better tho

How do you know what is your body expelling toxins vs a relapse? My LLMD feels strongly things will settle down

And yes, she is considered a "top-notch LLMD. I am petrified of a relapse .... Been there, can't go there. Again [Frown]

[ 07-10-2013, 08:52 PM: Message edited by: beths ]

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GretaM
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Hi Beths,
I don't know how to answer your question.

I am still very new to this myself.

The only thing that I can advise is to journal your symptoms daily, if you're not already.
That way-If you are falling into the grips of this blasted bug again, you can pattern your decline when you have your next appt with your LLMD.

How on earth does anyone fight this bug while not actively being treated?

I am hoping and praying that she is right and your lyme is gone.

Keep us posted [Smile]

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Lymetoo
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I would treat for yeast .. HARD .. and see how you feel in a few months. Maybe you're ready!

--------------------
--Lymetutu--
Opinions, not medical advice!

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BoxerMom
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Oh gosh. I wish I had the answer for you.

So many of us are in the same boat. We treat and treat and have periods of feeling good, only to have symptoms return.

I now have many very good days, but still some major sick ones. Trying to figure out flare vs. herx at this stage of treatment is maddening.

I also think I have crazy high inflammation that does not turn off! I know this is suppressing my immune system and making me feel wretched.

But I am not out of tricks and neither are you. Try the detoxing but don't let symptoms get too much worse.

The fact that you felt best on IV is very telling.

I owe you like seven PMs and ten phone calls. Honestly, I don't know what is wrong with me. I'm not keeping up with anyone lately, so don't take it personally.

I will surprise you with a call on one of my good days.

Big hugs.
[group hug]

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

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BoxerMom
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Have you tried LDN? That is next on my list.

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

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beths
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I have high inflammation too- saw a ND who piut me on activated charcoal and phytosterols. As well as tumeric.

So sad tonight - and scared. Trying to be positive, hoping its just old toxins

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CD57
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Look into Japanese knotweed, EGCG, boswellia, and the other antiinfallmatory herbs in Buhner's new book. He says the proper plants act as steroids without the terrible effect.
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lululymemom
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Our llmd told us the abx themselves can cause inflammation that can take a couple of months to subside. In our case thats exactly what happened. Drinking lots of dandelion tea and taking curcumin worked very well..

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

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surprise
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I can't go without quality curcumin supplement daily.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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beths
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I will try the above suggestions.

I guess it doesn't make sense of doing fairly well the last 4 months for everything to flare so quickly-esp since I went off abx last summer and didn't have the horrible aches like I have now.

I wonder if the diflucan is also contributing- I was on IV clindy which I'm sure stirred up some major yeast.

Thanks for all the suggestions

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Keebler
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-
You might do well with transition guided by a LL ND.

When considering herbal / nutritional / adjunct methods:

if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -

- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )

Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.

When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.

-----------------------

http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

D.O. (Doctor of Osteopathy);

D.C. (Doctor of Chiropractic);

Integrative / Holistic M.D., etc.

(Be aware that those in some categories can have zero or various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)

Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:

Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;

knowing which supplements have direct impact, which are only support and which are both.

You can compare and contrast many approaches.

BASIC HERBAL EDUCATIONAL & SAFETY links,

BODY WORK links with safety tailored to lyme patients,

LOW HEAT INFRARED SAUNA detail,

BIOPHOTON - BIONIC 880 (& PE-1) links, and

RIFE links.
-

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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP & ADRENAL SUPPORT
-

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Keebler
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-
After Diflucan, for maintenance against candida:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030549;p=0

OLIVE LEAF EXTRACT LINKS


Others to consider:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=121034;p=0

BERBERINE LINKS SET


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/119197?#000000

Topic: Garlic vs Allicin


PAU D'ARCO
-

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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91327?#000000

Topic: How did Burrascano cure himself? - Feb. 2010

See links to the book and to the website which she keeps current.

See BOTH of her posts, further down the discussion thread:

Pam Weintraub
Member
Member # 15718

---------------

She also has other posts here. You might search for those, too.

http://flash.lymenet.org/scripts/ultimatebb.cgi/ubb/search/search_forum/1

LymeNet Archives
-


TF posted:

From "Cure Unknown" by Pam Weintraub:

p.291

Joe Burrascano stopped to tell me how hed cured his own Lyme disease in 1998. Hed been on the antibiotic Ceftin for twenty-six months when, with all his symptoms finally gone, he decided to stop treatment cold.

Slowly his Lyme disease returned, but instead of resuming treatment at the first sign of relapse, hed let himself fall far back into illness before starting the Ceftin again.

He repeated this cycle once, then again. After the third cycle, which produced the strongest herx I had in years, the symptoms never came back, Burrascano said.


Weintraub did the same. Let herself crash to the bottom of the lyme pit, then restart Ceftin and treat til symptoms abate. Do 3 rounds like this.

Burrascano explained the premise: Antibiotics like Ceftin killed spirochetes only when they were metabolizing nutrients.

But the intensity of the attack also made spirochetes rush for cover, causing them to stop metabolizing or, he theorized, convert to hard-shelled cysts.

A course of treatment therefore might kill some spirochetes but cause others to hide out, temporarily leaving the patient without any symptoms but still harboring the germ.

Only when treatment stopped and the adversity was gone would the spirochetes return to normal, multiplying in number and causing the symptoms again.

When symptoms were bad, then the infection was on the move, and antibiotics could kill spirochetes. So thats when you stealth-bombed them with Ceftin, dousing more spirochetes with each such onslaught until, you hoped and prayed, you killed them all.

It was a grave mistake to keep the dose low, Burrascano had warned, because that would selectively kill the weaker, more reachable germs, leaving a stronger, deeper infection behind. p.292
-
For ease of reference, from that thread, her two posts:
-------------------

Pam Weintraub posts:

I just happened to notice this thread. Nowhere in Cure Unknown does it say that this is the first and last treatment for Lyme disease for anyone. This is a misunderstanding of the text.

Speaking for myself, I used the pulsing method ONLY AFTER four years of aggressive treatment for Lyme and coinfections.

After those years, I was able to push symptoms back to remission but only while still on treatment. Off treatment, I relapsed over and over again.

The final, pulsing technique allowed me, finally, to get off antibiotics without further relapse --and I have been off them now for more than six years.

The pulsing was recommended by Doc B ONLY for the patient who had already been aggressively treated, and was now completely asymptomatic while on treatment, in other words, for the chronic relapser --a patient like me.

This is all spelled out in detail in Cure Unknown: Inside the Lyme Epidemic, published by St. Martin's Press.

Hope this all helps,

Pam Weintraub

--------------------
Pam Weintraub
Cure Unknown
http://www.cureunknown.com

=========================================

[with question posed: only for lyme?]

She replies:

yes, only for Lyme: after four years, my relapses were pure Lyme disease, no treatment for any coinfection had any impact on me anymore, as in the past.

My babesia --once the biggest problem-- was gone and it was the Lyme, alone, that remained. The pulsing worked, I believe, because in stopping treatment for a long time I let all the spirochetes come out in motile form in force, and it was therefore possible to kill them.

But this was only possible because I started from a completely asymptomatic place.

Pam Weintraub
Cure Unknown

--------------------
Pam Weintraub
Cure Unknown
http://www.cureunknown.com
-

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Keebler
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-
To help relieve twitching:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM LINKS sets
-

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faithful777
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If you have high inflammation, you should try proteolytic enzymes like lumbrokinase or serrapeptase.

These need to be taken away from food to be effective at lowering inflammation. They made a huge difference for my husband and I.

--------------------
Faithful

Just sharing my experience, I am not a doctor.

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Lymetoo
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quote:
Originally posted by surprise:
I can't go without quality curcumin supplement daily.

-
Me either.. and the health benefits are pretty amazing!

--------------------
--Lymetutu--
Opinions, not medical advice!

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SusanH
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What is your quality curcumin supplement of choice, if you don't mind me asking?

Susan

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surprise
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Curcumin brands can differ from person to person, so, for me,
I've like

Enhansa (if you can get a Dr. to write a script for it, Lee Silsby pharmacy will bill insurance)

Longvida brand-

I just bought some from Pure Encapsulations I am to start tomorrow.

The Thorne brand (Mervina, I think it's called) I was not impressed with-

I think Tu Tu uses NOW brand with success- I haven't tried this one yet.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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GretaM
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When I take curcurmin I get auditory hallucinations.

Thorne was the brand I took.

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lululymemom
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We were recommended by Buhner to.take curcumin xanthorhizza for babesia. The brand we found was on the Tropilab website.

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

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LymeXtu
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Beth,

Hope you are doing better?

I just wanted to let you know after stopping treatment last August I have had quite a few instances of escalating symptoms, one very recently and when it happens I am sure it is a total relapse and it is very concerning and scary.

The last one got me to call and schedule an appointment ( we see the same LLMD ).

Mine usually consists of increased joint and muscle pain, and sometimes bone pain that is on the high side of moderate.

Each time this has happened in a few days things have settled down again for me to the point where I feel much better ( not quite normal but very functional ).

I am not sure what causes the episodes but just wanted to give you my experience and hope the same thing happens for you and that you are feeling better.

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Ellen101
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This discussion came up at my last appt with my LLNP. She said so many people spend yrs treating lyme that she feels its being overtreated. If symptoms persist then it is time to look elsewhere.

The analogy she used was for a pot of water boiling on the stove...the lyme ignited the fire, which in turn started other things to boil. Now the lyme has been treated and it's time to put out the other issues. To keep going after the lyme can cause more problems for your body in the end.

Have you done any food testing? I recently had some done and was amazed how many foods my body was reacting to. I met with a lyme literate nutritionist yesterday and he is advising more in depth food testing to be done. Once the test results are in he will sit with me to develop a 12 day eating plan in which I will only eat the same foods for that time period, giving my body a chance to calm down. Then we will move on from there.

Don't underestimate food allergies. After lyme treatment your body is traumatized and full of inflammation. Just stopping the meds is not enough. Calming the body down and addressing areas of inflammation is key.

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surprise
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The book

Beyond Lyme Disease by Connie Strasheim (2012)

goes into these issues, it's excellent. Adrenal Health is something I've completely missed in myself, yet so glaring.

Hope you are feeling better too, Beth.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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beths
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Thanks everyone- I am not feeling great-twitching, muscle burning and aches and pains.

It isn't getting worse or better-I also have tongue burning-which is a new symptom and can be yeast or hormones!

I will try all the anti-inflammatory suggestions

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