New here i need help despereatly

Ho Mom to 3 kids,

Welcome to the forum! Having Lyme is definitely a hard road to go down. The first thing I want to ask is if you are doing any detoxing? Detoxing helps relieve some symptoms. It's the toxins that the bacteria release when they are killed that makes us so sick. Are you seeing an LLMD(Lyme Literate Medical Doctor)? It is very important that you go to someone that knows about Lyme Disease. Are you taking anything to boost your immune system like Vitamin C, garlic supplements? Also, it is a good idea to take probiotics when you are on antibiotics. It helps put the good bacteria back in your gut, etc. I've been reading alot lately and I've read that supporting your liver with Milk Thistle is also good to do. When the toxins die off, it puts a strain on your liver and the liver cannot filter out the toxins fast enough.

One more thing...Have you had your Vitamin D levels checked yet?

Sorry for all of the questions but I needed more detail.

thank u cajungrl and gary...for responding so quickly ...

Have you had your liver enzymes checked? Mine have been elevated and I have that pain in the back area too. Also, get your thyroid checked. Lyme Disease can sometimes mess up your entire endocrine system including your adrenals.

Having low Vitamin D can cause severe pain. Are you taking Vitamin D supplements?

A magnesium supplement is good to take but you may have to go up a little to help with the pain and to help you sleep at night. Hmmmm, come to think of it, loose stool may be from the magnesium you are taking. There is also something called C Diff that can cause loose stool and needs to be tended too immediately so let your doctor know.

Look at the thread titled, "New To Lyme?....Start Here!" On the very first post, they are directions about doing a detox bath.

Mom, 400 mg of doxy a day is really a inadequate amount of abx to treat late stage lyme and babs. In fact, you should be on a combo of different abx and I would not think that doxy would be one of them for babs.

I personally think you need to see a more experienced LLMD. lylaso has suggested an excellent doctor, the one who writes the lymemd.blogspot.com. I would take up lylaso's offer and send him/her and email and get more information on this doctor. He's really good and knows how to treat lyme disease with abx.

If you're interested in a more natural approach to treating lyme disease, then I'd suggest you order the book, "Beating Lyme Disease" by Dr. Jernigan. I wrote about my treatments here on this thread
https://www.healingwell.com/community/default.aspx?f=30&m=1690780

Feel free to post any questions about my treatment here or send me an email.

Like I said, for someone who has late stage lyme and babs too, your protocol of 400 mg of doxy isn't going to cut it. You either need to get on a better combo of abx treatments or look into getting natural treatment like I did.

I'm so sorry for the suffering you're going through. You can beat this disease, but you need to get the right doctor and the right protocol to do it. What you're doing now is not going to get you better.

Keep us posted.

Gary

Hi again Mom,

That's what we are all here for...to give support. I know how hard it is having no support from family and friends, believe me I've been down that road. We are always here for you if ever you need to vent or just ask a question.

I also want to say that I agree with GWB about not being on the right medications. You should be taking either mepron or malorone for Babesia in combination with an antibiotic for Lyme.

Here is a great site to read about avoiding side effects from doxycycline:

www.ehow.com/how_2165217_avoid-doxycycline-side-effects.html

Just a few things I want you to read:

Combination Antibiotic Treatment

Combination therapy with two or more antibiotics is now increasingly used for refractory Lyme disease and has also been given as initial therapy for some chronic presentations.

This approach is already used for another tick-borne illness, babesiosis. Oral amoxicillin, cefuroxime, or (more recently) cefdinir combined with a macrolide (azithromycin or clarithromycin) are examples of combination regimens that have proven successful in clinical practice, although controlled clinical trials are lacking in persistent, recurrent, and refractory Lyme disease.

Combination therapy in patients with Lyme disease raises the risk of adverse events. This risk must be weighed against the improved response to combination therapy in Lyme disease patients failing single agents.

Doxycycline Dosage Information:

Dosage

Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000–6,000 mg of amoxicillin, 300–400 mg doxycycline, and 500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.

All of this information came for the ILADS site. Please take time to read it. it has very important information:

www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Mom,

I really feel bad for all the suffering you've been going through. It must be pretty difficult for you, especially not having a supportive husband to be there for you.

You asked what natural methods I use. Go to this link and it explains it all:

https://www.healingwell.com/community/default.aspx?f=30&m=1690780

I went to the Hansa Center in KS for treatment http://www.hansacenter.com/

If you can't travel that far, you can always buy his book, "Beating Lyme Disease" (second edition) by Dr. Jernigan

http://www.hansacenter.com/beating_lyme_disease.php

Please do something soon! If you get the right treatment like the doctor in Maryland offers, or a natural treatment like I've had, you can get better. But you are not going to get better on the protocol you're on. As you can see from almost everyone who's responded to you, the protocol you're on isn't going to cut it for you. You need a more experienced doctor, and once you start getting better treatment you will begin to feel better and not feel so hopeless as you do now.

Have you been prescribed pain medication by your doctor for pain? If not, you need to ask him about this because there's no reason for you to have to suffer with that kind of pain. A good LLMD would not let you do that. The same for anxiety issues. Many lyme patients have anxiety, especially those of us who've had neuro-Lyme as you have. You may need to get on some Xanax or some longer acting anxiety medicines to help you deal with the anxiety.

Again, any LLMD who knows how to treat this disease would be prescribing you something for pain and anxiety and also depression which you seem to have symptoms of. If your current LLMD will not prescribe any of this for you (assuming you're not on any of these things) then see your GP or a pain specialist. There's no reason for you to have to suffer like this.

Keep in touch with us. We are here for you. You're in my prayers.

Gary

i really feel that the doxy is reving up symtpoms worse and making me anxious and very nauesas..it gets real bad about an hour after i take it...Gary i cant get to the site you gave me...can you tell me what natural method u use...Bucci..im having such a hard time...i know i need something for the lyme and babesia but its like my body is telling me the antiboitcs are making me sicker..i can just feel it..and not just herxing cause my symptoms are different..my symptoms are horrific...i was real sick before i started the antiboitcs but now the symptoms are so severe most days i really feel like im dying...cause of the symptoms...at least before i could walk 2 times a day..and felt as though i was making very slow progress but it was progress none the less..and i was sleeping better...and didnt feel the severe feeling were i cant relax my body...and i have this constant humming and vibrating and buzzing feeling..its horrible...a nightmare...i want some peace..and serenity..for a while.....thanks to both of you i will email later...love to yall Cynthia

My thoughts are with you most of us have been where you are, and taking it one day at a time, or just a hour at a time is hard. Ask your Dr about if you are having a herz. Are you taking tindamax or flagl , they make the symptoms worse but in the long run works. I have had the pain and symtoms since 2000, some drs literate to lymes have a neutrization shot make from the flu vaccine and it helps me alot, just not FDA appoved. Just keep thinking I can do this and you will be in my prayers.

Kathy

Hi Cynthia,

First of all, welcome!   I believe not everyone is meant to take antibiotics, works great for many but not for everyone.  I became better using Dr. J's alternative medicine protocol and know many others who also used the same protocol and are better (one lady was sick for over 30 years). 

Anyway, I suggest learning as much as you can and a good place to start is to first read books on alternative medicine such as Healing Lyme by Stephen Buhner and "Beating Lyme Disease" by Dr. David Jernigan (the protocol I used). 

Amazon has Mr. Buhner's book and you can find the other book below:

http://hansacenter.com/books.php

www.hansacenter.com

There is information on how you can follow this protocol from home as I understand how difficult it is for you to travel including buying the right botanicals which will not only kill the lyme bacteria but help remove the toxins left over.

I am also a strong believe in heavy detoxing and you can read about that in the thread located on the top of this forum called "New to Lyme ~ Start Here!" 

Stress plays a huge factor in this disease because it compromises one's immune system making it weaker which is not good.  I ended up divorcing my 2nd husband due to stress because he was not supportive of what I was going through when I was sick with chronic lyme so I really feel for you.

I hope this helps and hang in there okay?  You can get better!

Denise

Mom,

I am so very sorry for the suffering you are going through now. Wish there was something I could do to help you. Taking an abx break is sometimes good and even LLMD's recommend it sometimes. Did you call your LLMD and let him know what all you're going through right now? You really should. I suggest you try to get an Rx for Xanax to calm you down. Seems you have a lot of anxiety going on right now. Can you get your doctor to Rx that for you?

Deejavu's post above yours has live links to the Hansa Center. Just click those links and it will take you the the Hansa Center website and give you all the information you need on the treatment and therapies they offer. Here's was I copied and pasted from their website but theirs so much more on their site so I suggest you try to go there and read about it. Plus one of the links is for the book, "Beating Lyme Disease" which I highly recommend you purchase.

These are some of the therapies they offer:

*Infrared Sauna

Specially selected infrared waves can penetrate the body up to 4½ inches. These rays target the tough-to-reach heavy metals and chemical toxins lodged in the fat cells and tissues of the body, systematically targeting increased lymphatic drainage. The perspiration from this type of sauna contains more toxins than the perspiration from physical exertion.


*ST-8 Lymphatic Drainage Machine

Combines four treatments in one machine: (1) Cold-gas photon therapy, which liquefies old gelatinous lymph fluid, (2) Rife-frequencies that sweep continuously from 1 hertz to lightwave frequencies, assisting the body in killing pathological microbes and restoring health and energy to the tissues, (3) Transdermal ozone provides increased oxygen to the tissues, enhancing every tissue function to achieve its best with maximum oxygen, and (4) a Scalar Wave generator enables the degenerated cells in the body to plump up and pull away from each other so that they can identify and communicate between each other.



*IonCleanse

An FDA approved device which uses an energizing metal array that sits in the water with the feet. This array creates a super-concentration of electrical ions (negative or positively charged particles) in the water. The heavy metals and toxins in the body are dislodged and migrate towards the feet and out into the water. Once in the footbath water, the toxic materials excreted from the body appear, greatly discoloring the previously clear water.


*LUX Therapy

This photo-matrix therapy incorporates over a dozen gemstones and minerals which are transduced into electromagnetic energy as well as using light, color, and frequency modulation to cause profound restorative and healing effects in the body, mind, and spirit. Gemstones were used to optimize the human heart's receptivity to hearing and communicating with God in the Bible in Levitcus.

Here's a list of treatments they offer:

Whether we use botanical or nutritional supplements, essential oils, a cold laser, NeuroPhotonic therapy, Magnetic Resonance therapy, gentle chiropractic adjustment, or detoxification therapies, all work to restore the integrity of the body's crystalline matrix, which will enable the body to get back to the business of maintaining health instead of fighting disease.

Specific Procedures

Our doctors utilize a variety of treatments during an office visit. For your program, these may include:

Addressing microbes, allergies, chemical imbalances
Magnetic Resonance Bio-oxidative Therapy
Gentle Chiropractic Techniques
Low-Level Cold Laser Therapy
Myofascial Release Therapy
Visceral Manipulation
Glandular Therapy
Cranial-Fixation Therapy
Chinese Herbal Medicine
Applied and Clinical Kinesiology
Sacrum-Occipital Technique
Homeopathy, Isopathy, Tautopathy
Nutrition, Cleanses/Fasts
Neurological Reflex Balancing
Dietary Counseling
Controlled Fasting Therapies
Counseling/Prayer
Detoxification Protocol & Bath Therapies
Neuro-Emotional Clearing
Quiet Mind Training
Proprio-Mechanoreceptor Alignment
Color Therapy
Percussion Therapy
Neuro-Lymphatic Balancing
Botanical Medicine
BRADE Allergy Desensitization
Meridian Therapy
Biosonic Repatterning (Sound)
Essential Oils

This is some of what I could copy and paste, but it would be much better if you could just click the links on Deejavu's post above you and it will take you right to their website.

Deejavu went on this same protocol I went on and she did it by the book and never went to his office. It's best to go to his office and get personalized treatment because you will be tested with BRS testing which allows your body to tell the doctor what your specific problems are so that he can give you the proper remedies to treat you. You can't get any of the therapies that I've listed from just reading the book.

However, Deejavu did very well on the Jernigan protocol simply following the book instructions. I suggest you click her email icon and talk to her and I know she will be very helpful to you if you decide to get the book and do the protocol. Deejavu was very helpful to me back in December when I felt like you did. I thought I was going to die soon from this disease, but Deejavu encouraged me and sent me emails and answered all of my questions. She can be very helpful to you.

I wish I could do more for you. Please keep us posted here on the forum and if there's anything else I can do for you let me know.

I am praying for you.

Gary

Post Edited (GWB) : 3/9/2010 10:04:08 AM (GMT-7)

thank yall...so sick right now..symptoms severe..didnt sleep at all last night or today...pray for me...will talk tomorrow..hope i sleep tonight...

Thanks to everyone for helping me...i have 6 more questions.........

1.does anyone have severe pressure and pain in their head and brain...all the time..like its swollen...also tingling vibrating..and it feels like not my brain..and i feel strange not like myself..and it feels like something in there...hard to explain.... get wierd sensations in brain when it goes from sunny to cloudy outside...so strange..i hate it..also severe migraines with aura now for 2 days..straight..hard to type this now..head hurts so severe

2. i have constant humming ringing vibrating buzzing and severe pain in my ears tinnitus so bad it makes me sick.and bad headahces daily...it is real loud at night..horrible..sometimes i feel like its driving me crazy...its horrible..

3.and my vision continues to worses daily...so blurry...flashing lights in peripheral..letters are slanted in books and on computer screen..its a nightmare...

4.also extremely sensitive to lights sounds and smells...cant stand even the smallest little sounds..and lights are blinding..smells make me so nauseas..i can smell so many things that no one else can...it horrible

5.im jerked awake everymorning with heart pounding rapidly...but im not anxious...and its alway around 6am...sometimes before..and then symptoms come and are severe..

.6. the tinnitus is so severe...that i cant even stand it when the planes fly over my house...or i just turn on the bathroom faucet ..it kills me..and i have constant humming vibrating and buzzing in my body ears and brain...this is h-ll on earth...i get no relief....


thanks for listening....i love yall for caring and supporting me...things are real hard right now with my husband...but i still have my son who helps me and is so sweet and kind...bless yall Cynthia