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free2bme19791
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/27/2017 7:30 AM (GMT -7)   
I was reading somewhere that certain herbs can cause a herx reaction to certain coinfections...i know my lymes is out of remission but my test came back negative but it always does...this will be my 3rd time...i can't afford to see a llmd and my Drs are saying it's fibro maybe ms and anxiety...i woke up 2 months ago with numb tingly fingers...i than had it in my legs and arms on and off but the fingers and hands stay the same...im cold all the time have floaters in my left eye...joints are swollen and hurt...long list of other symptoms...im getting a brain MRI today and spinal MRI in 2 days...im trting to figure out which coinfections i have...if anyone can help me it would be greatly appreciated...i have 100mg of doxy 2x a day for 10 days but I don't know because I've had lymes for 28 years now...

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6201
   Posted 9/27/2017 7:55 AM (GMT -7)   
Hi free2beme -

I'm sorry you're struggling with those sx. And you are on the right track with suspecting Lyme (and/or other coinfections) have relapsed. Regular MDs will almost always default to MS, fibro, etc. because they've been disinformed about Lyme. That is why we need Lyme specialists.

You can also manage your own herbal protocol and we can help you get started but I would still seek professional support if you can.

Herxing is not limited to specific herbs or any other treatment - herxing is the result of hitting the infection with whatever you're treating with. Detoxing can also generate herxing.

This is a great symptom questionnaire that can help you determine possible coinfections:
Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

Also, look for "Cajun Girl's" post in the "New to Lyme?" thread at the top of the page for a symptom spreadsheet to help organize symptom progress, which can also help you with treatment.

Hope that is helpful - if not please keep asking questions.

-p

Post Edited (Pirouette) : 9/27/2017 9:02:03 AM (GMT-6)


PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9097
   Posted 9/27/2017 8:07 AM (GMT -7)   
Welcome here free2bme19791. I am so very sorry you have lyme disease.

And the testing is so very unreliable. I certainly know your frustration here.

If your doctor is like mine, he will put you through test after test looking for everything EXCEPT lyme disease. Most doctors are so very unfamiliar with lyme disease. Slowly they are learning, as more and more celebrities come and talk about having lyme.

I don't think your antibiotic treatment is enough to do much at all. You need more than 10 days, that is for sure.

There are herbal treatments you can do. Many here are taking herbs to treat their lyme. There are herbalists that can help. There are books that can help.

I so feel for you and how difficult this is. You have come to a caring, helpful place so that is a great start.
____________

Good Article

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27793
   Posted 9/27/2017 10:49 AM (GMT -7)   
I would just start treatment with the herbs - start with Lyme...and then after awhile on it...if you plateau or don't respond at all...switch over to Bartonella....then babesia...
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

free2bme19791
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/27/2017 6:42 PM (GMT -7)   
my symptoms to date are:
floaters in my left eye...foggy brain...voice goes hoarse...fatigue by afternoon...sore jaw...teeth feel super sensitive...anxiety...numb arms legs and thighs that come and go...numb tingly fingers that I woke up with on July 15th and still have there's days it's worse but doesn't go away...face gets numb like lidocaine from the dentist...lips sometimes get tingly...tongue too sometimes...cant remember things have to write everything down...stiff neck...back pain...leg and hip pain...swollen fingers some days...swollen achy joints...migraines...irritability...days where i have no energy...elevated temp usually 99.5-99.9...cold all the time have to wear layers...cant concentrate...heightened sense of smell and sound...weird feelings in my hands like the wind is going right through them...from jan-june of this year constant utis, yeast infections and bacterial vaginosis...night sweats on and off...vision a little worse in my right eye than it was last year and just started about 3 months ago when most of the symptoms started...i had a tick on me 2 years ago on Christmas morning...got sick a few months later lymes test came back neg Dr said fibro and I didn't know enough or think to pursue lymes...3 months ago I had a very stressful event happen and have been getting sicker ever since...my last bloodwork 2 months ago said neg lymes but my Epstein Barr IgG came back >600 which is high...dr said I was exposed to it or it was a past infection...neuro Dr didn't even want to hear the word lymes and said test was neg you don't have it

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 942
   Posted 9/27/2017 7:50 PM (GMT -7)   
Sounds to me like you should get checked by a biological dds. Sounds like most symptoms could be related to jaw

WalkingbyFaith
Regular Member


Date Joined Aug 2017
Total Posts : 483
   Posted 9/27/2017 8:35 PM (GMT -7)   
free2bme,

I'm so sorry this is happening to you. You said you can't afford an LLMD and mentioned herbs. The easiest, fastest way to get started treating this on your own with herbs is to go to www.buhnerhealinglyme.com and look for the basic Lyme protocol. The recommended herbs, dosages, and sources to buy the herbs are all on that website.

I would recommend you also buy Steven Buhner's books, if you can afford it. They are not expensive. Healing Lyme 2nd edition is the most important one. He has two other books that cover all the other most common co-infections.

I know Peteza said she followed Buhner's advice and treated Lyme and her worst symptoms first. That worked very well for her. She didn't worry too much about trying to figure out which coinfections she had. She said she just treated Lyme and her worst symptoms and towards the end treated bart and babs.

Buhner's books have recommended treatments for all kinds of symptoms. You can also use the search feature on that website to search by symptoms to see what he recommended for those. Buhner no longer answers questions on the website, but you can learn a lot there. The information is all very organized.

As for herxing, herbs can definitely cause herxes. It is best to start with very low doses and work your way up very slowly. Buhner's doses are very high, in my opinion. For powdered herbs, I would recommend starting at 1/16 - 1/8 of tsp. With tinctures, start with 1-3 drops.

Starlight*
Regular Member


Date Joined Apr 2015
Total Posts : 47
   Posted 9/27/2017 11:10 PM (GMT -7)   
When you have strong neurological issues like tingling I would try to source minocycine, use this alongside a lyme herb protocol (minocycline has shown to be helpful in MS, it reversed tingling type symptoms in myself very quickly)
Look for herbs that are neuro protective/regenerative

free2bme19791
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/28/2017 5:58 AM (GMT -7)   
the sore jaw and teeth feeling funny only happened a month ago...most other symptoms I've had for awhile bit the numb and tingky fingers happened 2 months ago never went away and the swollen joints too...the Drs have me second guessing myself at this point...they want to medicate me with antidepressants that also work for fibro like cymbalta and my psychiatrist wants to put me on buspar...i don't want to mask my problems I want to fix them and I'm 95%sure it's my lymes...im so tired all the time...i have 3 kids who are special needs and between schools and therapies and my Drs it's tough...i need to get better...i guess I was hoping if I had a herx than I could put my own mind to ease as to being 100% sure it's lymes than try to fight the Drs to treat me...first Neuro I saw last year flat out told me he doesn't believe in lymes disease and now the one I have doesn't even want to hear t he word...all she says is all other tests are neg so it's fibro...i took my first Epsom salt bath last night...4 cups of Epsom salts In the water...i didn't have any peroxide to put in and I didn't really feel anything...its scary not knowing for sure what's wrong so I can't fix it

WalkingbyFaith
Regular Member


Date Joined Aug 2017
Total Posts : 483
   Posted 9/28/2017 9:14 AM (GMT -7)   
Be very careful about Rx drugs for other illnesses. I don't know exactly what kind of drug Cymbalta is or what it does, but if it suppresses the immune system it could be horribly bad for Lyme and co-infections.

Your symptoms absolutely sound like Lyme, bartonella, and babesia to me.

I know it's scary not knowing for sure what is actually causing your problems and how that can really mess with your mind and emotions. Take heart. You are not alone. It is possible to recover on your own treating with herbs. Others have done it. I'm working on it now. I did have a doctor, who I no longer see. I have an appointment with a new LLMD soon, but I no longer put my faith in any doctors whether Lyme literate or not. They're humans like everybody else. They don't all know as much as they should. They're not all nice and understanding. They certainly don't all get it right, or this forum wouldn't be here.

Not trying to discourage you from seeing a doctor, just trying to put things in perspective. Knowledgeable doctors can certainly help and can make this journey easier and maybe shorter, but you still have the ability to help your body recover on your own.

Do These 3 Things Now:

1. Do something every day to help your body. Use some of the detox methods daily. Include a couple of binders daily. (Charcoal is probably the cheapest, easiest to find, and safest to start with.) Avoid toxins daily (eat the cleanest food you can afford, drink clean water, get mold and chemicals out of your environment as best you can).
2. Encourage yourself. Believe that you can recover your health. Ask all the questions you need to.
3. Make a decision about the herbs. If you decide it's something you want to do, you can get started very quickly and hopefully get some symptom relief soon.

Things to Think about and Do As You Are Waiting:

1. Research the drugs your doctors want you to take, and decide if you do or don't want to take them. You DO NOT have to take something just because a doctor wants you to.
2. If you can, put some money aside and start a little savings account. This will give you some funds to pursue Lyme testing, Lyme literate doctors, and herbs and supplements if you want to pursue those.
3. Read and research Lyme disease and the various co-infections on the internet and through books. Steven Buhner's books are very science-based and have all the herbal protocols. Dr. William Rawls' book, Unlocking Lyme, is very easy to read, encouraging for those trying to treat themselves with herbs, and is a really good and informative book to familiarize yourself with many of the treatment modalities that you will hear about from other people with Lyme. He has a very common-sense approach. Dr. Horowitz, a well-known Lyme doctor, has also written some books.

Post Edited (WalkingbyFaith) : 9/28/2017 10:18:26 AM (GMT-6)


free2bme19791
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/28/2017 10:03 AM (GMT -7)   
I gave up on the meds the Drs wanted me to use for what they say is all In my head pretty much and am not going to use them...im currently on gabapentin 300mg 3x a day for pain and anxiety although to be honest does nothing for either so at my next appt will be asking the Dr to ween me off it and also taking tramadol (ultram) 50mg in the morning which I also am seeming off of...i was on it 50mg in the am and 50mg before bed...i went from someone who coukd multitask and care for 3 kids and myself and take care of the house 4 months ago to not being able to remember things having to write it all down...struggling with simple things...everything is pointing to lymes...im waiting on my brain MRI results from yesterday...my Neuro if there are lesions I know is gonna say ms...i have a history of lymes and similar symptoms as before mixed with new ones but they don't want to listen and I can't seem to get my records from 25 years ago and that Dr is a pediatric specialist so I can't even go see her anymore as I'm 38...im glad I found this forum as it's gonna be a bumpy journey...im new to all these treatments and herx stuff and jyst don't know where to start as far as treating myself...part of me is afraid if I do and there is a small chance it's not lymes I could hurt myself

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27793
   Posted 9/28/2017 11:01 AM (GMT -7)   
Re:

"jyst don't know where to start as far as treating myself...part of me is afraid if I do and there is a small chance it's not lymes I could hurt myself"


If you take some of Buhner's herbs you're not going to hurt yourself if you don't have lyme disease.

But, if you have a herx while taking them, it will be confirmation for you that it is Lyme.
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

free2bme19791
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/29/2017 5:40 PM (GMT -7)   
I'm not sure if I'm herxing or not but for dinner i had garlic on my noodles and 40 mins later my arms hands and fingers got worse with the numb tingly burning feeling and my air hunger got worse...now 2 hours later my shoulders feel heavy air hunger still there and my stomach feels crampy...im still new to all this so sorry if I ask so many quesyions...my brain MRI showed no ms and the report says indication: Lyme disease with bilateral numbness so I'm guessing that's saying I have it...gotta see what the Drs say next week...will keep all posted...made a cup of yogi detox tea see if it helps or causes more of a herx...

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1658
   Posted 9/29/2017 6:08 PM (GMT -7)   
^^^

You have way too many unique lyme and co symptoms for it not to be lyme.

I to also recently relapse and the numb and tingly extremities was an old symptom that came back in full force.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

free2bme19791
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 9/29/2017 6:25 PM (GMT -7)   
I had the numb legs when I was first diagnosed 25 years ago but the numb tingly burning fingers and and arms are new as is the air hunger...drs first though it was anxiety but I've been taking a stress formula vitamin that has l-theanine and an herbal blend of lavender and lemon In it that has made my anxiety almost gone...anxiety started when other symptoms did 3 months ago and numb tingly hands started 2 months ago...i only started taking the vitamins about 3 weeks ago and they helped but the numb tingly extremities never got better which is what my Dr thought would happen if my anxiety went away...

free2bme19791
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 10/1/2017 10:24 AM (GMT -7)   
so I had to go to the local walkin today as my sinuses and breathing felt off...turns out I have a sinus infection and an upper respiratory and possible uti...the Dr prescribed cephalexin as the antibiotic and one diflucan for after I'm done...i didn't tell her I'm already on doxy 100 mg 2x a day so I'm hoping the combo of the two antibiotics helps

Mojkce
Regular Member


Date Joined Apr 2016
Total Posts : 75
   Posted 10/1/2017 11:43 AM (GMT -7)   
To be sure can you get your DR to order lab work with Igenex? They can request that the lab tests for the Lyme bacteria and co infections. I'd search for a good LLMD in your area who will be much more supportive and help you figure this out.You could post another thread here and ask. Surely someone can offer advice on an LLMD near you.

free2bme19791
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 10/3/2017 2:06 PM (GMT -7)   
my Dr wont order it as he says my insurance wont cover it

free2bme19791
New Member


Date Joined Sep 2017
Total Posts : 16
   Posted 10/5/2017 12:58 PM (GMT -7)   
so i went to my Neuro Dr today whose still saying it's all fibro and maybe arthritis because my neck is stiff and has gotten worse only I the last 2 months so just for grins and giggles I mention Lyme disease again to her since I have a history of it to which I once again get told nope it's not lymes because my blood test western blot I think came back negative so I tell her those are only at most 80% accurate and that's only if it's still in your bloodstream...she jyst stares at me...says my MRI shows no lesions so again no lymes...so I tell her that there's herbal supplements tgat you can take that will cause a herx if you have it she shakes her head with a loom like I'm crazy and says nope not true lololol...wow what ignorance...these Drs don't want to follow anything other than cdc standards and pretend lymes doesn't exist but is willing to treat me for another condition (fibro) which has no real way to test for other than ruling everything else out
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