posted
I have found a new llmd who is much closer than where I was going. She is actually a nurse practioner who trained under a well known llmd from New York. finally got ahold of my current llmd after five days of trying who said still to try the plaquinal for the RA and then add in mepron in two weeks for lyme and babs. that is it for lyme meds. Not enough for me. Any advice would be greatly appreciated. would plaquinal help with any lyme stuff?
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
A friend of got rid of a lot of their Lyme with plaquinel. It might also help with the babesia, but I'm not sure. I've never tried it.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Glad you found a new LLNP. I hope you will be able to get in soon.
Just hoping she did the ILADS physician training course.
Plaquenil is often used by some LLMDs, though not so much for lyme, rather for babesia. Those with lyme often are helped by this due to how it affects babesia (it's similar to malaria and many malaria drugs are often used in Babesia).
The method of action here, as described, seems not to affect infection but, rather to block certain actions in the body that result in inflammation & pain.
I may not be reading that correctly & it may also have other actions . . . so do ask your new LLMD all about this and if will be right for YOUR body, at this point in time.
You will need to be very careful with this yet for some it can be a good help.
A place to start, though never a place to just stop with your research:
Hydroxychloroquine (HCQ), sold under the brand name Plaquenil among others, is a medication used for the prevention and treatment of certain types of malaria.[1]
Specifically it is used for chloroquine-sensitive malaria.[2]
Other uses include treatment of rheumatoid arthritis, lupus, and porphyria cutanea tarda.[1] It is taken by mouth.[1] . . .
. . . Medical Uses
Hydroxychloroquine treats malaria, systemic lupus erythematosus, rheumatic disorders like rheumatoid arthritis, porphyria cutanea tarda, and Q fever.[1]
In 2014 its efficacy to treat Sjögren syndrome was questioned in a double-blind study involving 120 patients over a 48-week period.[7]
Hydroxychloroquine is widely used in the treatment of post-Lyme arthritis. It may have both an anti-spirochaete activity and an anti-inflammatory activity, similar to the treatment of rheumatoid arthritis.[8] . . .
Adverse Effects . . . .
Eyes . . . risk of macular toxicity . . . .
. . . Macular toxicity is related to the total cumulative dose rather than the daily dose. Regular eye screening, even in the absence of visual symptoms, is recommended to begin when either of these risk factors occurs.[10] . . .
. . . Overdose
Due to rapid absorption, symptoms of overdose can occur within a half an hour after ingestion. Overdose symptoms include convulsions, drowsiness, headache, heart problems or heart failure, difficulty breathing and vision problems. . . .
--
poster's note: be sure to read this full page, also go to the mfg. website and read the pharacological "insert" . . .
I post some of the risks, not to instill fear or have you resist this treatment, but to be sure to talk with your new LLMD about this . . . and how to avoid the risks.
There are some very substantial actions / supports that can be taken before starting this that can help your body better manage this - and other treatment substances.
There also might be something different than Plaquenil that your new LLMD wants to use for you.
If your appointment with the new LLMD is soon, call their office and ask their nurse if it might be better to wait on this until you have a chance to actually sit down and talk with the new LLMD --
- especially since I would never start such a drug without specific advice on what supports are required for my particular body to be able to handle it.
Most specifically - there are some very key antioxidants that should be taken for help in eye protection -- and you'd need to know exactly what they are and how / when to take so as not to interfere with any Rx.
Good luck with your new LLMD. -
[ 06-10-2018, 04:47 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
thank you very much for all that information. My rheumatoid doctor actually prescribed plaquinal the other day for my RA but I have not started it yet.
I have an appointment next week with my new llmd and I will await to start this medication and bring it in to the appointment and discuss with her.
I am looking forward to another opinion and someone who wants to treat the entire body, which I feel is so important. I am suffering terribly for over a year.
I believe that my RA is from lyme yet my llmd does not. We just have a difference of opinions on a lot of stuff so time for a new doctor and a new approach.
I live alone and am so scared sometimes on how to deal with everything that is going on with me. My body and head feel so different.
I suffer from terrible headaches, off balance,rocking on a boat sensation all the time. It never leaves unless I go to bed at night and sleep.
I believe this is all babesia issues especially since I awake every single day with terrible sweating, drenched like I could ring myself out.
My fog is terrible, I cannot even spell a simple word. I know I have a lot of anxiety but believe it is all caused by this terrible lyme disease.
(breaking up the post for easier reading for many here)
[ 06-08-2018, 11:20 PM: Message edited by: Robin123 ]
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
Yeah, sounds like Lyme and babesia. As you find the treatments that will work for you, you will feel better, so hang in there!
May I say, your spelling does look good here! One cause of brain fog for me was being low thyroid, for which I was bloodtested. When I went on Armour thyroid, I felt present again.
We're all different in terms of what we're dealing with and what we respond to. The trick is to find that out.
Also, if you could break up your text, a lot of people need that in order to read here.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I am sorry, I will try to keep remembering to break up the texts. Thank you for all your replies. I think the biggest problem was for me, I haven't had a lot of blood test to really see what is going on.
I have only done igenex for coinfections and babesia duncani came up low positive 40. I never did the lyme panel through them, however, she did do a lyme test through a local lab and bands 58 and 34 came up and another one I forget. She said band 34 is specific for lyme. Is this true? Active lyme or past lyme?
I have written down all my questions for this upcoming appointment next week with the new doctor. I am much more prepared than before.
They have suggested that I see a health coach who can help me with my horrible eating habits. They are a team approach meaning they also have a psychologist on board who you can see also to deal with anxiety, etc. I think having a team of people is going to be far better for me and they are closer for me to travel too.
I want to thank everyone who has tried to help me. Even though I have deal with this disease many years ago when my daughter was sick, I was in a much different position. Much younger and not alone. I am now in this battle by myself, since I am a widow also so I depend on this site for many reasons.
I will let everyone know how my appt. goes next Tuesday.
Posts: 468 | From boston, ma | Registered: Feb 2018
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Linda, I'm glad you've found someone else to consult about your issues. Never give up. Being alone with this is really rough.
Have you explored any Lyme support groups in your area that meet up? Even though I spent years on here, what a difference it made to physically have Lyme friends some 8 yrs ago.
As far as your eating habits....it's all about what you put in that grocery cart. Only shop the outer parameter of that grocery store.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Hi Linda - here's the explanation for the Western Blot antibody bands. The link comes from the sticky at the top of Medical Questions titled, "Important Information about Lyme and Co's." I recommend reading through some of the links there - very helpful info.
posted
thank you again for the replies. I have a question. Every single person that I tell I am seeing a llmd and I have to pay cash, they all say the samething to me "why don't these doctors take insurance". I actually have a very good friend who calls these doctors "crazy doctors who are not really doctors". They don't believe in lyme disease nor do they understand why I have to pay so much for treatment. How do I answer these questions? So sick of being asked the same questions.
Posts: 468 | From boston, ma | Registered: Feb 2018
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
LLMDs don't take insurance because they don't want to deal with insurance co. Remember these docs work outside the system of the insurance co.
Insurance co do tell the medical establishment how to treat the patients. They say what is acceptable treatment.
If you have ever gone to war with an insurance co, you would understand.
LLMDs give you all the info you need to file it with your insurance and then it becomes your war with them. I don't blame them!
Until the powers that be decide we have a real crisis with Lyme & co and make laws about letting these doctors treat.....insurance co will continue to fight paying.
Many insurance co are not a problem for many patients. It gets treated like an out of network. Other insurance co are all about deny, deny, deny.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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UNDER OUR SKIN -- streaming at some video vendors . . . the library also might have the DVD to check out . . . or purchase at their website. -
[ 06-10-2018, 05:50 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Rather than talking to friends about lyme - because, let's face it - few of use are ever able to muster the kind of energy to put this into language they will understand
and anyone healthy who hears the voice of someone ill will usually interpret them as less than smart enough to make decisions. This is just the fact. A weak and tired voice does not carry confidence in others' eyes. Sadly.
And, they trust the typical medical system. This is all foreign to them. As them if the would like some information. Let them read the literature. You should not have to teach them all this. If they want to learn more, great. If not, slip away - at least for a while.
Links below are just a start for anyone who accepts your invitation to study a bit on this in order to better understand.
After YOU watch the film above, then invite them to watch it. I would not watch it with them for reasons I just can't verbalize now.
And leave it at that. Change the subject. Say: it's complex (I do not like "complicated" as that sounds too emotional. "Complex" sounds more like the science it is).
For anyone new to lyme or other tick-borne disease, these are among the top patient education, advocacy and public awareness organizations. What patients call a "LLMD" a lyme literate medical doctor and why that matters so much . . .
this would apply to your new LLNP as well. For any friend who is willing to learn more, explain that it is sort of like a full graduate education required to learn it all -
- but it's so worth it as everyone can benefit and they will be more prepared to prevent problems for themselves in future, too.
posted
I am not new to lyme disease, as I mentioned before, my daughter had chronic lyme 15 years ago and we struggled with that and she got better and is now 30 years old, healthy and on her own. I was just wondering how do you answer people when they ask you why the lyme doctors do not take insurance. I know why, but was having a hard time explaining it to a good friend. I did not give out names or any other information, I know better than that, just wondering how do you answer if someone asked you.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Other than the film, I know you've been at this a long time with your daughter. The articles were not so much for you but FOR YOUR FRIENDS.
Give them the links - the links are for your friends so they can better understand.
It's just too hard for anyone with lyme to fully explain. I hope the links - or other links other posters might suggest -
would get you off the hook from having to explain. Let the links talk for you, let them find out from the links.
That's what I do. I share some articles, films, etc. Even after so many years, there is no way I can explain to others.
I have to have the LL authors' works speak for me.
However, rarely do people really read those or even watch the film. But, it's all there, if they want to know more.
Remember when we were kids and asked an adult how to spell a word. Many of us were told "Look it up in the dictionary"
At dinner time if anyone around the table had a question about something, my dad would pull the encyclopedia out of the bookshelf, even going upstairs to get it and we'd have an impromptu lesson.
My sister one day in her teens, had made a rhubarb pie with cool whip. She did not cook it. My dad would not let any of use take a bite until he pulls out the book to be sure that was okay. Some parts of some plants require cooking.
I hope your friends might be the kind to want to learn more - to see the range of LL authors out there. It is fascinating, in some ways. I hope they are inspired by your courage and strength to go and learn more.
But do yourself a favor and let others show them, those who have been at this for years with their documentaries and articles. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Many of the ILADS conference sessions might spend a full hour explaining even one question that a friend might ask.
So don't feel like you're dropping any ball if you tell a friend to read the articles or watch film. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks Keebler, I appreciate the links and thanks for the words of wisdom. I know you have been at this a very long time.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
lindadanis
So happy you have a new set of eyes to help you on your healing journey. And it is indeed a real, time-consuming, rough journey. But you can get better with the right LLMD.
I just had to quit my LLMD after 1 1/2 due to finances. I loved my LLMD. Every monthly appointment, patients have to fill out a 2 page symptom list according to ALL body functions. It looks something like this;
After each body system function, there is a list of symptoms that Lyme patients experience, and you circle which ones that are present at that moment. Then the LLMD adjusts/adds/ to your treatment of your clinical symptoms.
The second page again lists all of the above body system symptoms and you write in, on a scale of 1 to 10, the severity of each of your concerns. It is a great progress report seeing each symptom diminishing from one month to next.
In regards to your Plaquenil question. . .
I was on it and it works well. It increases the effectiveness of macrolides antibiotics (Biaxin, Arith) and tetracyclines antibiotics (Doxy, Mino.)
P.S. Many states have passed laws protecting the medical licenses of LLMD's. Hopefully the tides are turning, although very slowly, and soon we will ALL have insurance covered LLMD's. 💚
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I am starting plaquenil tomorrow and my past llmd told me to add mepron in in about a week. I will see what my new llmd says about that. Thanks so much for the information. I appreciate it so much
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
so here I go with another question for all of you. My current llmd, as you know, I dealt with her years ago when my daughter was sick and I loved her, so about a year ago, I woke up out of the blue with this crazy anxiety, I had just purchased a puppy six months ago) and that is when my horrible nightmare started. Anyways, I thought it was just anxiety so I went to a therapist for my anxiety and have been seeing her since.
It was my daughter, who is now 30, who suggested I get tested for lyme which all of you know I did. However, I did not go back to her llmd, there was a new place much more local that had opened up closer to home for me, so I made an appt. there.
It is ran under an umbrella of a famous llmd from New York. They offer many services, from mental health, to health coaches, breathwork, you name it, they offered it. I tested there and came out positive. However, I saw a nurse practioner there and she was very lovely.
I got scared, jumped over to my current llmd because of our past relationship with my daughter and I went and saw her. She is the one who started me on meds.
That was back in February and she is the one who took me off meds when she thought I might have RA and told me to go deal with it and get on that medicine. I spoke to her last week and she said to continue with the plaquenal and add in mepron in about three weeks. She is the one I am leaving because I feel her heart is not into it like before.
I know I have high anxiety, I was put on Ativan a year ago, 3 mg. a day and I have weaned myself down to 1.5 a day. My current llmd seems to think I have too much anxiety to even deal with the lyme treatment. Is she right? The original place is where I am going tomorrow. I called them and explained to them I couldn't drive to the place where I was going and needed to be able to get somewhere closer. I have an appt. with the same nurse practioner as who originally diagnosed me.
I sleep through the night, wake up everyday and cannot breath the minute I hit the kitchen. Its like this horrible anxiety/sweating, etc. , until I take my 1/2 Ativan and then it will somewhat settle down, but never leaves all day.
Is this lyme, babesia or an anxiety issue? am I jumping the gun on my current llmd or do I need a second opinion? Am I just going crazy? Do I even have lyme? The reason I am asking if because my current llmd said to me last week " I would like to rerun the babesia and see if it went up or down because sometimes our own body can take care of the infection and maybe its gone"
What did she mean? I haven't been on abx that long for it to be gone. I am confused, scared, and just praying that I am making the right decision leaving her. She has been dealing with lyme for 20 years, the NP has been at it for only two years. Makes me nervous.
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
I just would like to list some of my symptoms: air hunger sweating off balance/floating/swaying on a boat feeling chills all day eye changes constant headaches terrible memory issues/brain fog cannot spell simple words get lost easy feet and legs hurt, Charlie horses almost nightly cry a lot never hungry night sweats feeling like I am really not there but am?
are these lyme symptoms?
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
Oh and lets not forget the new rheumatoid arthritis diagnosis last week which includes my fingers are so swollen and hurt, my toes and feet hurt and my knees are swollen.
Posts: 468 | From boston, ma | Registered: Feb 2018
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I am no doctor, but your symptoms sound so much like tick borne illness. I am so sorry for what you are going through.
I understand your anxiety and wanting to switch doctors. You are listening to your heart, which is probably very wise.
It sounds like you need to be in treatment and give things time. It must be so hard when you are alone, but I am glad you have your daughter, who understands all of this. It is wonderful that she is doing better now, thanks to the care you made sure she received.
As far as why LLMD's don't deal with insurance, besides the amount of time they need to spend with their patients because of the complexity of this disease (not 10-15 minutes as most doctors are familiar with), they often lose their licenses for prescribing long term ABX. I think they are under less scrutiny if their patients are the ones filing the claims.
Hang in there and keep in touch with others here on Lymenet. You will feel less alone that way. I would also second trying to find a local support group so you can network with others who understand what you are going through and you can discuss treatment and resources in your area. Best wishes to you. You will get through this.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
thank you so much for your understanding of my complex situation. Yes my daughter is so much better, however, she is not around for me nor does she seem to have the compassion for me. She is living with her boyfriend, planning on getting married and never wants to talk about my issues. I am alone and that is the hardest part of this. I am so glad that I have people, like you, who will get on this forum and try to help me and give me their advice. thank you again.
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
I do know one thing, I am getting worse by the day. I am struggling. I am having leg numbness all the time. the worst symptom by far is this off balance feeling in my head all the time. I pray that I get answers tomorrow with the new llmd.
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
I was having blood pressure issues last week and the doctor doubled my blood pressure medicine, now my pulse is running in the low 40's, therefore, I feel like I am going to faint from time to time. I am a mess, lol. Lots of medical issues on top of the lyme issues.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
In regards to your question. . ."Do I even have Lyme or Babesia ?"
Your LLMD tested you and diagnosised you with Babesia. She prescriped you Mepron and Plaquenil. Your clinical symptoms present as Babesia. You have Babesia. You have not completed a treatment protocol to address this yet so your situation will unfortunately not improve. You must start treatment for life to get better.
We are here for you.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
thank you Bartenderbonnie. Yes I do know I have lyme and babesia but it was my llmd that made that statement a few ago that made me start questioning it. I am moving forward tomorrow to another doctor, a NP and I will start treatment with her immediately. Thank you so much for stating that you are there for me as well as many others that have written to me. I know I am not crazy, I know its this terrible disease that makes us think we are crazy. I will get better. I know that with the proper treatment plan and patience.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
You are not crazy, you are sick.
Here is a really good post about other Lymenet member's experiences with the exact same thing as you.
posted
thank you again, that list you mentioned sounds a lot like me, hah? I know I am sick but honestly feel crazy sometimes. I am seeing my new NP tomorrow at 11 and am looking forward to it. I will let you know how I make out. thanks to all that have replied to me and have tried to help me out throughout this horrible ordeal.
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
Wow! Low 40s is too low for your pulse, Linda! Maybe they have you on too much BP medicine-doubling it was maybe too much for your body. Plus all the side effects from BP medicines... If I were you I would go to the ER if it stays that low. Or the very least call the doc who doubled it. Seriously...
Also I'm not sure if your daughter was on this combo but I took Plaquenil with Biaxin for many years and I believe that was for Lyme, not the babesia (but unsure). Maybe you can get on Biaxin too, if they still do that. I'm glad you found another practitioner, btw!!!
I'm truly sorry your daughter isn't there for you, especially since you were there for her, helped her while she was getting treated. And now that she's fine and dandy she can't help you? Smh I can't imagine being that heartless (sorry to speak of your daughter that way but I'm pissed at her!).
Posts: 366 | From MA | Registered: Apr 2006
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posted
So here is the update from my appt. this morning: First let me say this place is fairly new, it open a year ago. It was opened under a New York doctor's license that came to this center once or twice a month and flew into Mass., where I reside. I met this nurse practioner back in December who ran the igenex coinfection panel and told me I had bart and babesia. igm for bart, active infection for babesia. No lyme test was ran then.
Fast forward to now, I go back today after seeing my daughter's llmd from 10 years ago and she remembers me well. I told her why I went back to the original llmd and she understood. The New York doctor is not longer part of this situation and now they have a mass. doctor there who is somewhat lyme literate but fairly new to it also.
She listened to my story and told me Not to take plaquenil for the Ra, in fact, she doesn't want me any abx until I detox my body and go on anti-inflammatory stuff such as milk thistle and a few others also probiotics to get me ready for the treatment of lyme, etc.
I am more confused leaving the appt than when I went to it this morning.
any thoughts on this? My old llmd told me that the RA was not due to lyme, she said it was. My old llmd told me to take plaquenil, she said NO it would cause herxes.
Posts: 468 | From boston, ma | Registered: Feb 2018
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Many Lyme literate doctors are helping folks clean up other issues of their illness prior to doing antibiotics.
If you aren't detoxing properly, if your liver is suffering, taking antibiotics will become a huge disadvantage for killing and quite possibly you will become worse than you are.
I know you are in a hurry to feel better. But patience is a must.
Did you talk with her about your very bad anxiety? Your body/mind is overwhelmed and anxiety comes from the stress within.
Please do a search on detoxing on this website. There are years worth of suggestions on ways to detox. Detoxing will eventually also help your brain.
Start one new detox protocol at a time. Give it a week and see how your body reacts. Then add in the next detox protocol.
There's no fast way through this.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
To help your body detoxify and become better able at handling treatment -- and, in turn, some liver supports can really help diminish pain and brain fog.
The the liver is working better, the brain can work better, too.
Milk Thistle is an excellent start, just excellent. Yet, even when starting low and slow, if it's too much, Dandelion capsules seem to work more easily for some. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
she did mention milk thistle, however, she was suppose to send me an email regarding where to get it and how much, I have not received it as of yet. I know that I need to detoxify but I am confused Keebler as to whether or not to start the plaquenil that I was given by my RA doctor. My fingers and feet are so swollen and hurt. any suggestions.
Posts: 468 | From boston, ma | Registered: Feb 2018
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posted
Is plaquenil and mepron usually taken together for babesia treatment?
Posts: 468 | From boston, ma | Registered: Feb 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You have to select ONE doctor right now. It's fine to take into account a range of opinions, of course. We all learn and remember the important stuff from previous doctors we've worked with (some things good to remember; some thing not.)
But rather than be pulled 3 ways, giving each equal leadership, it's vital to choose ONE doctor now. Discuss all your questions, all the considerations with that doctor.
Even just reading your posts and account of this 3-way conversation can make one dizzy with who's saying what not to mention the WHY and HOW of it all.
If the doctor you choose to guide you for this stretch suggest something that does not work or you have hesitations about, talk to them.
Have a talk with your inner self about whose range of expertise, whose knowledge of lyme, babesia, etc. is best suited to your needs.
Keep in might what's causing what. Don't just chase the symptoms. Look to who understanding the causes and is able to address the causes in a variety of ways.
Also, key, is who knows the most about liver health, too. Very few, in any, can get by without proper support methods.
It's doubtful that you will move forward going back to each one with every decision. It's too confusing and paralyzing. It's not fair to you or to them.
Lyme, Babesia & TBD treatments have been discussed and tweaked at every conference.
And - there is still no "one plan" as each patient's protocol has to be designed especially for them and each step decided along the way in light of what's going on, what you are able to tolerate, etc.
There may be times when your treating doctor will consult with another - or suggest you see an additional doctor.
Still, everything - everything - needs to be run past your one, single treating doctor. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: "Is plaquenil and mepron usually taken together for babesia treatment?"
Other will know if these have been a duo in the past.
Look up the ILADS guidelines & also Burrascano's. They are different. And also consider the year each was written.
Consider that other LLMDs might have advanced ways to treat.
Someone up to date with ILADS treatment guidelines can best answer that. As well, someone who has read the books of all the LLMD authors out there and has attended the most current ILADS conference presentations.
And someone who has the freedom to practice as they see fit. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I agree with you totally Keebler. I need to decide and stick to my decision. I like my current llmd because of the past history I had with her many years ago when she treated my daughter successfully. However, getting to her can be a bit of a challenge since I cannot drive too far with my brain fog, etc. The new NP is much closer and I can get to her easily, but I feel deep down within my heart that they are only new to this disease in the past year or two and my current llmd has been treating it for over 20 years.
I will have to find a way to travel to her if that is who I stick with. my gut is to stay with who I know and trust. I guess I just wanted a second opinion and maybe someone to tell me that there is a quick fix to this problem and I know there is not.
Thank you so much for your help. I have just ordered some liver support, etc. She did not put on the list she sent me any milk thistle however.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Keebler
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- Your "current llmd" is not practicing as she did in the past, though. Through all of your posts, it seems that something has drastically changed.
It may matter a lot less as to how long a doctor - or NP - has been practicing than their ILADS "science minded" knowledge base and skill. How up to date & how flexible are they? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Dr. H - 2017 Lyme Conference - Southern Tier Lyme Support
Presenting ideas from his latest book
Video: 1-hour & 52 minutes
April 29, 2017 -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Bringing back up your most recent question for others to reply to -- [although you'd still need to consider how you tolerate mepron or if other Rx choices might work better for you]
Q: "Is plaquenil and mepron usually taken together for babesia treatment?" -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Lymetutu, am I assuming that plaquinal used with mepron is not usually prescribed for babesia? Sorry but I am confused because my llmd told me to add in mepron this weekend to the plaquinal.
Posts: 468 | From boston, ma | Registered: Feb 2018
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I just received the email that the new llmd wants me to order:
turmeric capsules cod liver oil liver support natural calm powder
she said some of this will help with the RA and the inflammation and help my brain function such as brain fog, memory issues, anxiety.
Posts: 468 | From boston, ma | Registered: Feb 2018
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map1131
Frequent Contributor (5K+ posts)
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Linda, what LLMDs were doing to treat Lyme & co 10-20 yrs ago is no longer working for patients.
The bacteria(s) have changed or the humans suffering are much more toxic from environment/diet when infected. Or a combo of both.
The great Dr B left his practice because he too realized treatments with antibiotics was no longer working. He went out of practice to find answers.
The great Dr K even admits he has had to change from his alternative approach because the bugs have dratiscally changed.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Keebler
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- The list that your new LLNP has suggested is excellent.
I assume for the "liver support" she gave a particular brand and that it's combination formula of some sort.
Indeed, it's a very good basic support list. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I want to thank everyone who has tried to help me the past few months. I know I can be a pain, lol but man, I feel so sick and the anxiety is just horrible. I have decided to go with the new doctor/nurse practioner who seems to know what she is talking about. I have ordered the supplement list and should be getting them in a few days. I just wish when I woke up I felt like the "old me". it has been so long I am forgetting who the old me is. The sweating and off balance stuff is my main issue along with this anxiety and terrible headaches all the time. I wish I could find relief from it. My head feels like its in a vice all the time. I am not going to take the plaquinel as she told me not too. I will keep you updated and again, thank you so much, I appreciate all the posts.
Posts: 468 | From boston, ma | Registered: Feb 2018
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these are the supplements that I just received. Vital Liver support. Boswella-tumeric complex natural vitality Calm powder Carlson Cod Liver Oil=liquid
I have started a few of them. new llnp said to start with one, wait a few days and then do another. any thoughts on this? No milk thistle, correct, here
Posts: 468 | From boston, ma | Registered: Feb 2018
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she said to do them for three weeks and then start with ONE DROP OF ABABS FOR A FEW DAYS THEN KEEP ADDING TO IT UNTIL I GET TO 20 drops per day. She said NO plaquinal for RA. So the only meds I will be on is ABABS???? does this sound right., doesn't seem to be enough lyme medication.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Keebler
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- Boswellia-tumeric complex is comparable to Milk Thistle.
That combination is excellent for liver support and has good antioxidants for your brain and your entire body. Should help reduce some inflammation and, thereby, helping to reduce some of the pain.
Think of Boswellia as a broom to sweep out all the gunk, so to speak.
natural vitality Calm powder is basically your magnesium
Carlson Cod Liver Oil=liquid -- for Omega-3 fatty acids that help your nerve fibers and brain, many other organs & functions. -
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Keebler
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- While this article refers to its help with cancer treatment, see the parts that explain its benefits for other issues.
. . . 4. Speeds Up Healing From Infections . . . .
. . . 5. Helps Prevent Autoimmune Disease . . . Boswellia interferes with autoimmune disease development, since it seems to help control the production of immunoglobulins, or antibodies, which are made by the immune system to fight potential threats: bacteria, viruses, fungi and toxins. . . .
Look at the full name for the Boswellia you have and then you can search further for articles and abstracts on that strain. the Dr. Axe article discusses somewhat the differences in strains. The second word in most herbs is key to the specifics when you do your research / reading. -
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Keebler
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- For now, yes, I agree that your LLNP's advice is well suited for where you are at this place and time. I think it's excellent advice for the items she's just started you on and there is a very good chance that these will work very well for your body.
I would not add to it at all. Keep her instructions as given.
In three weeks' time if you can follow the LLNP advice to the letter - exactly and with good self-care / sleep/ nutrients -- with this new set of supplements, my guess is that you should notice a nice bit of turn around and relief.
These are not "just" supplements, actually. It's clear that this combination has been well chosen for many reasons. There are antimicrobial & other healing properties in these supplements along with the key function: lower inflammation and "move out the trash" so to speak.
I was amazed how how fantastic Boswellia helped me feel many years ago. Glad to be reminded of it again. Like a good friend, indeed, it was to me. -
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map1131
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linda, outstanding advice was given by Keebler.
One thing to consider. This is just an example I'm giving here...….The doc wants you to work up to 20 drops BUT you might be one of those people that can't get to 20 drops because you react badly.
So give you body time to catch up and handle and work your way up to 20 if possible.
In other words you may be on a slower track. That's ok.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Keebler
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- Pam makes great point. Remember, though, the drops are not to be used during the next 3 weeks.
It's important to have that 3 weeks - 21 full days - without the challenge of the drops. And when you are done with the first 21-day segment, do keep to exact instructions, drop by drop.
Do not speed it up. If as you progress to added drops, if it's too rough, cut it back down for a while. It's true that some people cannot get to the higher dose. Don't push it.
And by then you might be back in touch with your LLNP.
You nor she will know exactly what the step after the drops will be until you are nearer there. It all depends on how you are doing. For now, please be exact with the these first two segments of your action plan.
Be sure to also get enough good water throughout the day.
And take note as to dosage and number of times used for the supplements. good luck. -
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thank you very much for all this information. I have started the supplements, very carefully. Can I be herxing on them? The reason I am asking is I feel like crap, not better, but didn't expect to feel better this soon. I am on NO ABS at all, just working up to all these supplements and then in another week or so, start the ABABS.
Posts: 468 | From boston, ma | Registered: Feb 2018
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sorry just reread what I wrote above, meant to say I am not on an antibiotics or herbal meds at this time.
Posts: 468 | From boston, ma | Registered: Feb 2018
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Keebler
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- You are taking - only:
Boswella - tumeric complex
natural vitality Calm powder
Carlson Cod Liver Oil=liquid
You ask if these will cause a herxheimer reaction.
Unlikely. While some of these hold a bit of antimicrobial properties, starting out at a low dose and building up to even a regular dose is not likely strong enough to clobber bad boy microbes.
The way they help is more like -- influencing the bad boy microbes to just knock it off, move along and straighten up - so to speak. They help your body to do the work.
However, if you take to much turmeric you might get some upset stomach. Best to take it with food. That works better for me so I don't get burp back.
About "feeling like crap,not better"
Even in this 3 weeks before your plan shifts a bit, you might get a sense that this nourishment is helping and it's a bit easier to manage.
Your food, your rest, gentle movement, ability to enjoy something - anything - that brings you a bit of interest or diversion . . . those are things in addition to the support herbs that can help.
There may be some foods in your life that would be best to avoid and others great to embrace.
Green Tea would go well with what you are doing - organic is best.
Be sure to get enough but not too much water and eat enough good food to ensure good regular bowel movements. This is vital to helping move out the gunk at natural speed..
The magnesium will help with that. If it causes gut / bowel upset, cut back on it.
Magnesium should help ease body tension a bit but it's not going to be like a fun ride at Disney world kind of high.
Food is key. I don't know what you are able to conjure up in your kitchen or entice family /friends to make for you . . .
what chores or other tasks that might be hard that maybe you could get some help with to help lighten your load . . .
Getting out in the daylight for 20 minutes first thing in the a.m. with no glasses, contact lenses or windows between your eyes and the daylight (not necessarily sunshine,
*** although sun on your skin - with no creams or lotions - for 20 minutes early in a.m. or later in day is vital, too.
*** IF you have not been on doxyclycline in the past month or two. IF so, keep your skin out of the sun. Doxy and sun do not mix, even for a while after stopping it. ***
The support herbs are there for support. They work in gentle ways and it will take time. I hope that you can at least feel some sense that you are nourished and nurturing the cells in your body and putting down - bit by bit - a foundation.
[ 06-27-2018, 12:46 PM: Message edited by: Keebler ]
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Keebler
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- Soothing yet energizing in a gentle manner:
Ashwagandha - Primal Herb -- just a start to the research.
Be sure to get all of Buhnner's books. -
[ 06-26-2018, 06:23 PM: Message edited by: Keebler ]
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Keebler
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- In that interview are many things specifically for you. 1. Within a few days you should feel better, with some relief. He says that is very important in his approach.
Also how these herbs work. It's very easy to listen to and gain a better understanding. Getting his books will help, too, but I just think that hearing that interview will be a help. -
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Bartenderbonnie
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Linda
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