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» LymeNet Flash » Questions and Discussion » Medical Questions » starting treatment... again

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Author Topic: starting treatment... again
Melanie Reber
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Hello friends,

It has been awhile since I have logged into Lymenet to ask about treatment.

The good news is that I have managed to go several years Rx free this time around. The not so great news is that some major symptoms have been creeping back in, and since I am really good at ignoring and procrastinating... things have gotten out of control, yet again.

So, I guess I just want to inquire about the latest and greatest protocols for Bart, Babs, and whatever else might be playing around in my brain this time.

I am seeing a really good MD who is versed in TBD care, and we are beginning with the most pressing matters- hormones, thyroid, asthma, sleep disorder, digestive issues, etc., etc. Labs have been ordered for tomorrow, and I expect to begin the really good stuff sometime next month.

I just want to educate myself, so I can converse inteligently when deciding on which road to go down first.

Any and all thoughts, experiences, suggestions, or just a pop in to say hello are more than welcome and my thanks in advance!

Melanie

Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Hi Melanie Reber

You do not know me but I know you. I have read LOTS of your previous posts and learned so much from you. THANK YOU!

Sorry to hear of your relapse.
We KNOW when it’s time to get back in treatment.
More hard work ahead, unfortunately.

Here’s some new treatments for you to research.

Disulfiram
https://www.disulfiramforlyme.com/

Clinical Trials
https://clinicaltrials.gov/ct2/show/NCT03891667

Induce Native Phage Therapy (INPT)
https://phagencorp.com/

Dapsone+ Doxy+Rifampin
https://www.mdpi.com/2079-6382/9/11/725

Exosomes Stem Cells
https://www.infusio.org/blog/exosomes-the-next-frontier-in-regenerative-medicine/

SOT Therapy
https://www.ledamedical.com/sot-therapy

FREmedica Wave 1
https://fremedica.com/

Dapsone+Doxy+ Ceftriaxone

Methylene Blue

Azlocillin (infancy stage)

Posts: 2291 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Rumigirl
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Wow, I remember you from way back when. It's great that you were in remission, but I'm sorry that you've had a relapse. The good news is that you have a good LLMD and that you're on the road back. Welcome back to LN.

Bartenderbonnie, that's a great set of links to get Melanie up to speed on what's new!!

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Carol in PA
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Hi Melanie!
Posts: 6942 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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More. . .

Evaluation of Natural and Botanical Medicines for Activity against Growing and Non-growing Forms of B.burgdorferi
By Dr Ving Zhang and company

https://www.biorxiv.org/content/10.1101/652057v1.full.pdf

Cryptolepis
Jutland nigra (Black Walnut)
Polygonium Cuspidatum (Japanese Knotweed)
Could eradicate almost all live cells of,growing stationary forms and persister forms.

Ground-breaking news in the Lyme community !!!
Lyme Patients Lawsuit in Texarkana (WE ARE WINNING)

https://www.courthousenews.com/wp-content/uploads/2017/11/LymeDisease.pdf

https://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=038119;p=0#000000

Posts: 2291 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Melanie Reber
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OMGOODNESS... thank you, thank you!!! LymeNet, and the users here have always been my saving grace and this time is no exception. [Smile]

I failed to mention that I was in Urgent Care a week ago...just could NOT breathe and my expired (2016) albuterol inhalers were not cutting it. I was coughing and choking so much that my throat was raw and I was eating cough drops like candy.

They prescribed a new inhaler, Rx cough meds, and a short course of Prednisone (I know, I KNOW), but the doc convinced me that breathing was somewhat important, and a short course would not do too much damage.

Knowing that I would be going to my MD soon, and that I really had no other choice, I acquiesced.

Bartenderbonnie- nice to meet you and your very kind words make my heart happy! Wow, HUGE appreciation for sharing so much information- looks like I DO have a lot to study to get back up to speed. SO great about the lawsuit! Once again, thank you so very much!

Rumigirl- my bicillin shot buddy! I guess you should remember coming to my rescue at the ILADS conference in DC all those years ago. I certainly will never forget your willingness to help me when needed.

Carol in PA- OMGosh, it is good to see you again! How ARE you girl???

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Lymetoo
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Hey there, buddy!! Good to see you .. but NOT HERE!!

I mentioned to you about sleep apnea. I would get that checked right away. My CPAP machine has already made my asthma a non-issue in just a few months.

I actually got referred because of my A-fib, but am glad that the asthma is better too.

I hope you won't need treatment with abx for very long. That is something I can't do anymore. Just can't.

Welcome back to LN!!

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

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map1131
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Melanie, sorry you are back seeking answers.

You might consider a more alternative route than abx. Herbs is one thing to consider. William Rawls has some of the best info on Lyme & co & herbals. He and his staff do phone consults.

Rawls, a doctor was taken down by the Lyme & co many years ago. Lost his practice and found his way back to somewhat of a normal life.

I found HRT sex hormones & the right thyroid hormones to be keys to me finding a huge part of myself again.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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marie
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Hi Melanie. Sorry you are back but it is good to see an old name on the board.
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Melanie Reber
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Why hello Miss Toots- yes, sleep apnea is a definite possibility WHEN I actually do get to sleep. I'll put it on my shopping list [Wink]

Thank you Pam- I know we all tread a fine line between traditional and alternative approaches, and the best docs incorporate both. Fortunately, I am seeing a really good Naturopath and have started with lots of things that are non-Rx while awaiting labs and a game plan. I will check out Dr. Rawls though as it sounds as if he has done some fine work. Also, yes, HRT and thyroid are pretty big issues for me too, and I am very ready to get back on meds for both.

Hi Marie- thank you so much and it is good to see your smiling face again too. [Wink]

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Rumigirl
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quote:
Originally posted by Melanie Reber:
OMGOODNESS... thank you, thank you!!! LymeNet, and the users here have always been my saving grace and this time is no exception. [Smile]

I failed to mention that I was in Urgent Care a week ago...just could NOT breathe and my expired (2016) albuterol inhalers were not cutting it. I was coughing and choking so much that my throat was raw and I was eating cough drops like candy.

They prescribed a new inhaler, Rx cough meds, and a short course of Prednisone (I know, I KNOW), but the doc convinced me that breathing was somewhat important, and a short course would not do too much damage.

Knowing that I would be going to my MD soon, and that I really had no other choice, I acquiesced.

Bartenderbonnie- nice to meet you and your very kind words make my heart happy! Wow, HUGE appreciation for sharing so much information- looks like I DO have a lot to study to get back up to speed. SO great about the lawsuit! Once again, thank you so very much!

Rumigirl- my bicillin shot buddy! I guess you should remember coming to my rescue at the ILADS conference in DC all those years ago. I certainly will never forget your willingness to help me when needed.

Carol in PA- OMGosh, it is good to see you again! How ARE you girl???

(Delayed response). Ha! I remembered seeing you there at ILADS, but totally had forgotten about the Bicillin shot thing. Did I find you a nurse to do it? My memory isn't what is once was. I wonder why . . .?
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Melanie Reber
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Miss Rumigirl- no, you did not find me a nurse as I remember... YOU gave me the shot! It was very brave of you and I was so appreciative because no one else would dare touch that extra large needle with a 10 foot pole! (and BTW, that is sort of how it feels going into the hip) [Wink]
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Rumigirl
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OMG, I completely forgot!

Well, I shouldn't be surprised; I'm pretty intrepid, and have done so much IV stuff and shots on myself.

And my husband learned how to give me Bicillin shots when I was on them. A friend gave herself Bicillin shots, I think. That's intrepid!

I can access my own port, that is, sterilize the area and put in a new needle and dressing. And it's a very small, a bit too mobile port at that.

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aklnwlf
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Hi there Melanie! I'm sorry to hear about your relapse. We're here for you!

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 5261 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Melanie Reber
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Thank you Miss Lone Wolf! It is nice to see you again and I hope that you are doing well?
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aklnwlf
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Miss Melanie I'm doing OK but fighting mast cell issues now. Different meds and big lifestyle adjustments. At least my brain is working most days now and I'm not as sick as I was with Lyme and Co. I'm sending you a hug!

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 5261 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
   

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