This is topic Can I still get better? in forum Medical Questions at LymeNet Flash.


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Posted by improver (Member # 8380) on :
 
I have been battling lyme and whatever else for years now and don't know where to turn.

I have been off of treatment for a while now and test negative including the I-SPOT and was thinking that whatever symptoms I had left were a result of toxins, viruses, gut, etc.

I have been having frequent heart palpitations, exercise intolerance (like walking around the block leaves me exhausted), neuro symptoms like brain fog, vision stuff at night, dizziness, etc.

I am working with a great LLMD and he isn't quite sure what to do with me since I have done lots of abx and other treatments.

My cardiologist can't find anything wrong with my heart (thank God) but it certainly feels like something is going on.

The reason for me saying all of this is that I always come back to.....it must still be lyme and co. I have been reading about how lyme can affect the heart and it is scary.

I am losing hope and wondering if someone can even get back to healthy from the way I feel. It feels like I might have wasted time exploring other possibilities and let this thing gain ground. Now I feel so weak and can barely do anything.

I needed to post this just to see what you all think. I had lots more to say but as some of you can understand I seem to have forgotten some of it.

[ 01-29-2016, 07:51 PM: Message edited by: improver ]
 
Posted by Keebler (Member # 12673) on :
 
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You may like your LLMD as a person and even be impressed with his / her knowledge. However, you may want to explore other options. First, the basic Burrascano template, see if your path has followed the basics of that.

Even some good LLMDs are not assertive enough or know the best support methods. You may need both a more assertive approach - not just to lyme but other stealth infections that may be in the mix - and support measures.

Of course, there is more to it.

And, there are other paths as well. I suggest looking into getting a rife machine and find a LL ND.
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Posted by Keebler (Member # 12673) on :
 
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To assess if your treatment has been assertive enough, a TEMPLATE of sorts.

http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf

ADVANCED TOPICS IN LYME DISEASE DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES

Sixteenth Edition - October, 2008

Joseph J. Burrascano, Jr., M.D.


See TF's successful experiences in this regard here:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/131353


Other approaches:

When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:

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 )

so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.

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);

Herbal Safety considerations & reference books; etc.


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 with links to articles, books, methods . . .

BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.)


Links here to two major sources: Buhner, & Zhang. Be sure to get their books.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

RIFE Machine - Reference LINKS
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Posted by Keebler (Member # 12673) on :
 
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https://www.youtube.com/watch?v=uj0H3T9HMeQ

"Why Can't We Get Better?" - slides are not showing, but his book has detail

VIDEO

One Hour & seventeen minutes - video presentation
Recorded at Western Connecticut State University on May 12, 2015.

Sixteen point model to consider with any treatment plan for lyme / tick borne infection / chronic stealth infections . . . .

" . . . Really, there are solutions for a vast majority of patients . . . ."

website & book: http://www.cangetbetter.com/

by a leading ILADS LLMD - November 2013
- Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease


http://www.lymedoctor.com/

Another excellent and well respected LLMD, book, website, etc.
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Posted by Keebler (Member # 12673) on :
 
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So, can you still get better? Most likely.
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Posted by Keebler (Member # 12673) on :
 
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Regarding the cardiac issues you mention here and have a separate thread about . . . I suggest a LL ND would be good to consult, if at all possible.

Some Rx for various other conditions can affect the heart, too. A good LL ND would be best able to work with you if you take other Rx.

There are some wonderful support herbs that can help while the "direct action plan" for infection is sorted out. Magnesium, not an herb but key nutrient for the heart . . . and the herb Hawthorn, for starters.

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

Topic: MAGNESIUM - Informational Links set


http://oneearthherbs.squarespace.com/important-herbs/hawthorn-crataegus-pinnatifida.html

Chapter from The One Earth Herbal Sourcebook (Tillotson, et.al.)

HAWTHORN (Crataegus pinnatifida)
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Posted by Jordana (Member # 45305) on :
 
What you're describing sounds like POTS, which can persist even after Lyme's been dealt with.

POTS is really most often a post-infectious condition ( viral or bacterial) that can resolve with time.

However, sometimes that means a REALLY long time, sort of longer than anybody has to feel like that every day.

It could STILL BE Lyme but I would bring this symptom list to a neurologist and ask to be screened for POTS. There are treatment options that could help with some of these symptoms while you're recovering.
 
Posted by improver (Member # 8380) on :
 
Thanks so much for the responses.

I have been having some other symptoms that are making me thing more about reinfection or lingering infection.

I have air hunger or feeling like I can't breathe right but my oxygen saturation is normal, palps, lightheadedness, unsteady gait, intermittent headaches, etc and when I think of them all together it sounds like babesia or lyme or something. The problem is that I was not looking at them together because with the palps and heart stuff I think I have been paying less attention to the rest thinking that I will just live with it.

It gets more interesting, I found a sandwich bag with a tick in it and then I remembered, oh yeah I pulled a tick off of my leg three weeks ago. Duh!

As for the POTS possibility, it could be because sometimes my heart rate is higher than it usually was when doing something slightly physical.

Keebler, thanks for all of the info,
 
Posted by Catgirl (Member # 31149) on :
 
It sounds like you might have babs or maybe proto.
 


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