New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Sahale
New Member


Date Joined Jun 2018
Total Posts : 8
   Posted 6/14/2018 9:34 AM (GMT -6)   
I'm new to the lyme world. Received results from IGeneX a few weeks ago and corresponded with their doc, confirming lyme (several strong bands). I do not think I was tested for co-infections - just learned about those....

"Frozen shoulder" and an M.D. friend lead me to the test. Odd bodily things are making sense now: tinnitus (bad), occasional joint and muscle pain, blurred vision, some weight gain (inability to lose), sensitivity to temps, occasional single days of "flu"..... etc. I'm a fairly active person in my 50's, but feeling the "weight" of lyme, with a body that no longer moves around effortlessly. No telling how long the lyme has been lurking. We've camped in the midwest many times in the last decade.

I like to research and I'm a do-it-yourself person. I'm not a fan of pharma unless all other avenues are exhausted (or for life-saving purposes, of course). Our home has an herbal pharmacy. We have a generally healthy diet that does include caffeine and alcohol - though not to excess. We rarely have the need to see medical docs.

My initial research led me to decide that I would not jump on the antibiotic bandwagon, and instead would go the herbal route exclusively. I have Buhner's book and was planning on that protocol, along with looking into Oregano Oil (per latest Zhang paper). That said, and after reading that most people do take antibiotics, I'm feeling fearful that my plan may not work and feel compelled to find a LLMD (good luck in Central Tx), though I'm sure antibiotics is the standard ... and perhaps that is in fact what I should be taking, despite the destructive nature of it. Do I have the luxury of time to experiment and how would I even know if I was successful?

So. Now I'm overwhelmed, a bit fearful and sad. There is too much information to digest, and now I really don't know what the best course of action is. At least there is this group, and I know that I'll be gaining emotional strength and great information because of it. So thanks for being here. Any thoughts welcomed.

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3894
   Posted 6/14/2018 9:59 AM (GMT -6)   
Hi Sahale!

Welcome to our site! Yes, there is a LOT of information out there-easy to get overwhelmed. Be sure to check out the "New To Lyme?.......Start here!" thread at the top of the Lyme forum. That is a great place to start and has information on detoxing, testing, diet, additional helpful links etc.


We have had many members fully heal from lyme with herbs. If that is the way you are leaning, go with your gut. You can always modify your treatment, I think that is almost a requirement! Recovering from lyme is usually not a sprint. As far as I know to date-there is no magic pill or treatment that works for everyone. There are a lot of opinions on what is best but what is best for one is not best for all. We encourage all members to work with their medical physicians and make informed decisions. A lot of us end up suggesting new things we want to try with our physicians!

The networking and information on our forum is invaluable and I 100% attribute all of the wonderful information I got on here along with the wonderful members to my recovery-including Drs. information. If you would like an herbalist referral, you are welcome to email me, just give me a few mins to make sure my information on here is accurate.. If you want to go the herbal route there are several herbalist that specialize in lyme disease. The buhner book is absolutely a great place to start!

Personally I will say I had a very strict diet when I became very ill, no coffee, no alcohol, no soda - pretty much a paleo diet. I went vegetarian for awhile but I struggled with weight loss so a nutritionist worked with me and I did a lot of bone broths.


Remember 1- you are not alone. 2-it is okay to be sad and angry/however you are feeling, but remember there is light at the end of the tunnel! 3- Hang in there!!!

~beth
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
August 2013- Finished all abx, continuing with herbs and homeopathy, Feeling good!
July 2014- Off all treatment since Jan 2014, just taking vitamins

Lovemy3
Regular Member


Date Joined Mar 2018
Total Posts : 26
   Posted 6/14/2018 11:03 AM (GMT -6)   
opugirl said...
Hi Sahale!

Welcome to our site! Yes, there is a LOT of information out there-easy to get overwhelmed. Be sure to check out the "New To Lyme?.......Start here!" thread at the top of the Lyme forum. That is a great place to start and has information on detoxing, testing, diet, additional helpful links etc.


We have had many members fully heal from lyme with herbs. If that is the way you are leaning, go with your gut. You can always modify your treatment, I think that is almost a requirement! Recovering from lyme is usually not a sprint. As far as I know to date-there is no magic pill or treatment that works for everyone. There are a lot of opinions on what is best but what is best for one is not best for all. We encourage all members to work with their medical physicians and make informed decisions. A lot of us end up suggesting new things we want to try with our physicians!

The networking and information on our forum is invaluable and I 100% attribute all of the wonderful information I got on here along with the wonderful members to my recovery-including Drs. information. If you would like an herbalist referral, you are welcome to email me, just give me a few mins to make sure my information on here is accurate.. If you want to go the herbal route there are several herbalist that specialize in lyme disease. The buhner book is absolutely a great place to start!

Personally I will say I had a very strict diet when I became very ill, no coffee, no alcohol, no soda - pretty much a paleo diet. I went vegetarian for awhile but I struggled with weight loss so a nutritionist worked with me and I did a lot of bone broths.


Remember 1- you are not alone. 2-it is okay to be sad and angry/however you are feeling, but remember there is light at the end of the tunnel! 3- Hang in there!!!

~beth


Hi Opugirl,

what protocols did you use? herbal and abx?

Thanks!
Symptoms Sept 2017. Positive Lyme IgM
Treatment Oct 2017-present

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3894
   Posted 6/14/2018 11:12 AM (GMT -6)   
Hi Lovemy3,

I was pretty fortunate that I did do a little bit of everything. I did abx, herbs, and a naturopath. I have numerous old threads on here...let me see if I can scrounge one up with my protocol in it....Nice - got it. Love this forum....

https://www.healingwell.com/community/default.aspx?f=30&m=3102148
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
August 2013- Finished all abx, continuing with herbs and homeopathy, Feeling good!
July 2014- Off all treatment since Jan 2014, just taking vitamins

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33968
   Posted 6/14/2018 12:09 PM (GMT -6)   
Well, I'm glad I asked you about your treatment!!! Thanks, Beth!
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

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3894
   Posted 6/14/2018 12:13 PM (GMT -6)   
smilewinkgrin me too lol!
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
August 2013- Finished all abx, continuing with herbs and homeopathy, Feeling good!
July 2014- Off all treatment since Jan 2014, just taking vitamins

TxBart
Regular Member


Date Joined Jun 2017
Total Posts : 85
   Posted 6/14/2018 1:32 PM (GMT -6)   
Sahale - I went the herbal/alternative route and am very happy with that decision. As was mentioned before, trust your gut. You can always go with antibiotics down the road if herbal isn't working. As far as LLMDs in Texas, I'm in Austin and there are actually several in the state (including in Austin). However, my treatment "quarterback" is a LL naturopath here in Austin. She is a fellow Lymie. She has been amazing and not only helps with the bacteria, but she also gets the whole you back in order with acupuncture, chiropractic (if you want it, I did not), supplements, vitamins...having been there, she understands what it's like. And she will refer out for anything that she's not comfortable treating. I do also go to an LLMD here in town for IV therapies (ozone, UVLRx and phospholipids). We also have a LL therapist who is a Lyme survivor. Surprising number of resources given we're in a Lyme free state. turn If you enable your email, I'll send you doc info.

Sahale
New Member


Date Joined Jun 2018
Total Posts : 8
   Posted 6/14/2018 2:06 PM (GMT -6)   
Thanks all. I feel better about sticking to my herbal/alternative route, though I still have fear about liver/heart/brain issues if I don't get things in check fast enough. A bit unclear on timelines, as I could well have a chronic situation and everyone is different. Right now, arm pain and tinnitus are the biggies.

Until I officially start a protocol, I'm taking 3 doses of wild oregano oil extract daily (Zane Hellas, min 86% carvacrol). It's my understanding that there is another form, "ADP", but I haven't read bioavailability comparisons. If anyone has info, I'd love to know about it.
Big thanks to TxBart - I enabled my email address.

gerdy
Regular Member


Date Joined Feb 2018
Total Posts : 110
   Posted 6/14/2018 2:20 PM (GMT -6)   
Hi Sahale,

We have some similarities. I have had frozen shoulder also and I'm not a fan of pharma unless, like you said, it's for lifesaving situations. I'm also a person who researches. I agree with Opugirl that you should go with your gut and have a strict diet, especially in the beginning when you're so sick. That way you'll have less problems.

Give your body what it needs, and it will heal.

Please don't be fearful. No need for it. You have every reason to be hopeful.

I've just finished my 1st month of recovery on Dr. Jernigan's remedies, and, like you, I was afraid, but it's turned out to be so natural, relaxing for the most part, and comfortable, with very good results.

I take 2 of Dr. Jernigan's remedies. No pharma.

The 1st remedy is to first, detox the body of lyme-related toxins (Neuro-Antitox II). It reaches all of the hidden reservoirs of ammonia in the body, even crossing the blood-brain barrier.

The 2nd remedy is dependent on my conditions and symptoms. This remedy is to control microbes, the bad bacteria, virus, etc. causing the disease. I take Lymogen.

Dr. Jernigan had lyme and is well now. He traveled the world to meet with the most knowledgeble people, and he created these remedies. He offers treatment in his clinic, The Hansa Center, and wrote a book, BEATING LYME DISEASE, Second Edition.

I completely believe this is the right path for me. I ordered his book, and I'm following his recommendations from the book. I call the clinic to order products including the book.

davidjernigan.blogspot.com/

Lovemy3
Regular Member


Date Joined Mar 2018
Total Posts : 26
   Posted 6/14/2018 2:21 PM (GMT -6)   
opugirl said...
Hi Lovemy3,

I was pretty fortunate that I did do a little bit of everything. I did abx, herbs, and a naturopath. I have numerous old threads on here...let me see if I can scrounge one up with my protocol in it....Nice - got it. Love this forum....

https://www.healingwell.com/community/default.aspx?f=30&m=3102148


wow you were really organized! Thank you! are the number of drops listed in April/May per day?

Also, are you still well? *fingers crossed*
Symptoms Sept 2017. Positive Lyme IgM
Treatment Oct 2017-present

opugirl
Forum Moderator


Date Joined Nov 2012
Total Posts : 3894
   Posted 6/14/2018 3:02 PM (GMT -6)   
Yes! Still well! Yes that was daily and expensive! Thank goodness I was organized with something in my life lol! I was desperate to figure out what worked and what didn’t. Can you imagine going from all of those to cold turkey? That part was terrifying. Gerdy, glad to hear you are having success on the Jernigan protocol. They are having a 30% off sale I think I just got an email about it. Keep us updated on your progress!
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
August 2013- Finished all abx, continuing with herbs and homeopathy, Feeling good!
July 2014- Off all treatment since Jan 2014, just taking vitamins

Sahale
New Member


Date Joined Jun 2018
Total Posts : 8
   Posted 6/14/2018 3:07 PM (GMT -6)   
Thanks again all! And thanks Gerdy for your encouraging words. It's funny, I'm not a fearful type of person, but I like to be in control of my body and this is a different beast - not to mention the "horror stories" that well-meaning individuals have relayed! I will check into the Jernigan protocol. Leaning toward Buhner at the moment but will give all their due research time.

Mind body spirit
Regular Member


Date Joined Jun 2018
Total Posts : 72
   Posted 6/14/2018 3:45 PM (GMT -6)   
Welcome

Lyme must be addressed from many different angles, as its not just one thing.

Better to treat it heavy and early with a comprehensive proven plan than wish you had later. Trust me on that one.

Find a lime litterate doctor in your area, learn as much as you can and take your health into your own Hands.

Be well
Ticks>headaches>bells p>Lyme>abx+Av,ozone h20,c silver,Mms,healthy then more ticks,trigeminal neuralgia,b fog,Stage 4 Lyme w 10 coinfections. 30 days iv rochephin. Buhner+,90 day live foods,bowel then parasite cleanse,cacao,mg,b-12, enzymes,Vit c,vinegar fire cider. No sugar,wheat,dairy. Probiotics,uv therapy,magnets,dry brush,sauna,cold showers,walking,advaita,egoscue,emf free.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33968
   Posted 6/14/2018 7:31 PM (GMT -6)   
Sahale said...
I'm new to the lyme world. Received results from IGeneX a few weeks ago and corresponded with their doc, confirming lyme (several strong bands). I do not think I was tested for co-infections - just learned about those....

"Frozen shoulder" and an M.D. friend lead me to the test. Odd bodily things are making sense now: tinnitus (bad), occasional joint and muscle pain, blurred vision, some weight gain (inability to lose), sensitivity to temps, occasional single days of "flu"..... etc. I'm a fairly active person in my 50's, but feeling the "weight" of lyme, with a body that no longer moves around effortlessly. No telling how long the lyme has been lurking. We've camped in the midwest many times in the last decade.

I like to research and I'm a do-it-yourself person. I'm not a fan of pharma unless all other avenues are exhausted (or for life-saving purposes, of course). Our home has an herbal pharmacy. We have a generally healthy diet that does include caffeine and alcohol - though not to excess. We rarely have the need to see medical docs.

My initial research led me to decide that I would not jump on the antibiotic bandwagon, and instead would go the herbal route exclusively. I have Buhner's book and was planning on that protocol, along with looking into Oregano Oil (per latest Zhang paper). That said, and after reading that most people do take antibiotics, I'm feeling fearful that my plan may not work and feel compelled to find a LLMD (good luck in Central Tx), though I'm sure antibiotics is the standard ... and perhaps that is in fact what I should be taking, despite the destructive nature of it. Do I have the luxury of time to experiment and how would I even know if I was successful?

So. Now I'm overwhelmed, a bit fearful and sad. There is too much information to digest, and now I really don't know what the best course of action is. At least there is this group, and I know that I'll be gaining emotional strength and great information because of it. So thanks for being here. Any thoughts welcomed.


Hi Sahale, welcome!

Frozen shoulder was one of my first symptoms...actually it all started with excruciating pain one evening...with my left side (arm/hand) going limp and numb. ER worthy pain...
That quickly turned into frozen shoulder....but very very painful.

Over the next few months, I developed more symptoms...but just shrugged them off..not realizing they were all linked.

When I was finally diagnosed with lyme, I thought I had frozen shoulder PLUS lyme...but the frozen shoulder was a result of lyme and/or coinfections attacking my nervous system...which then resulted in frozen shoulder and serious muscle atrophy.

Re: abx vs herbals. Why not start on a herbal therapy and take a bit of time to decide if you want to go to a LLMD and go the antibiotic route. That way, you will be treating while you read, research and decide on what you want to do.

"Now I'm overwhelmed, a bit fearful and sad" This is normal, ....it is a nasty disease....BUT...you're not alone...we're here...and please keep asking questions...or just come here to vent if you're having a bad time...or to celebrate a good day...or part of day.
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

Sahale
New Member


Date Joined Jun 2018
Total Posts : 8
   Posted 6/14/2018 8:25 PM (GMT -6)   
Thanks Girlie. I feel your arm pain... ;) I hit a volleyball about a month ago and the pain almost made me pass out.

Right now I'm on my own protocol of oregano oil, cinnamon bark oil and clove bud oil (as Zhang et al. used), until I return from summer travels and can seriously follow a "proven" protocol. Wondering how many people here went gluten, dairy, sugar, alcohol, caffeine free? An interesting manifestation is that I now have alcohol sensitivity. My body often "burns" after consuming just a beer or some wine. Sad.
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, August 21, 2018 10:29 PM (GMT -6)
There are a total of 2,995,349 posts in 328,258 threads.
View Active Threads


Who's Online
This forum has 161326 registered members. Please welcome our newest member, John D.
271 Guest(s), 7 Registered Member(s) are currently online.  Details
Nick_69, BabsBunny, Ides, zack36, Saipan Paradise, DJBearGuy, (Seashell)