At A Total Loss Now

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RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/8/2009 11:23 PM (GMT -6)   
Well i talked to a laywer today, he informed me there is in fact lyme in this part of Tx. but I/he can not make the Dr. treat me for it. and that i should go back to said Dr. and ask for a refural to someone else to treat me. i wish it was that easy. i have checked into  other Dr.'s here and not 1 knows or  is willing to treat for lyme. so i guess i am just wasting my time and theres. i think maybe its best for me not to bother ya'll with my woos. seeing as there is no way i can seek treatment and contrubit to ya'll.
my only hope now is for the disablety to go thro so i can seek treatment elsewere. it is so sad that we amaricans can not get help in the USA, but we help others in 3rd world countrys with there medical. its behond me. at lest my plot is paid for..lol never though something as a tick/Dr. would help to put me there.
 
my prayers go out to ya'll
   RD
                                                                                                                 
 
still looking for answers
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/9/2009 12:10 AM (GMT -6)   
I'm so sorry RD. I wish there was something I could do for you. I wish I was strong enough to fight with you. I will keep searching the Internet for you though. There has got to be something out there.
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 6/9/2009 1:20 AM (GMT -6)   
RD,

There are some herbal protocols that can be done from home:

Stephen Harod Buhner wrote a book called "Healing Lyme" in which he details his protocol for Lyme using specific herbs.

Dr. Jernigen has a book out called "Beating Lyme" in which he talks about his protocol for treating Lyme, mostly using herbs, too. These products are available from the Hansa Center website.

Dr. Zhang has an herbal protocol based on Chinese herbs, and I've read that he is willing to do brief phone consultations, not sure what his website is...

Also, if there are any Naturopathic physicians in your town, you might consider working with one of them to help you with improving your overall health, and they may be able to help guide you in one of the herbal protocols from the books mentioned above. Naturopathic physicians tend to be more open-minded, as well, so you may find one that is willing to acknowledge your need for treatment for Lyme Disease.

Please don't give up coming here - you do contribute here, even though you don't see it that way.

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/9/2009 6:11 AM (GMT -6)   
call nutramedix and talk to them about their research. There may be so eons not so far... They have offered doctors to give free herbs to one patient. Of doing antibiotics .. I believe in their protocols and have done only their herbs with good results....

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4282
   Posted 6/9/2009 6:16 AM (GMT -6)   
Hi RD,
 
I'm really sorry about this.   When I found out I had chronic lyme my doctor would only give me Doxy for 6 months (I had refills so I went 8 months).   Then he refused to prescribe antibiotics for fear of my body getting damaged.   I remember at that time I was furious as I thought that antibiotics were the only way to get better..   But it turned out it was a blessing in disguise as I didn't know what to do or what to take after I was all done with the Doxy.   I couldn't travel far so I was at my wit's end.
 
I joined a forum (not this one) and just kept reading what others were saying.   I tried all different remedies, none of them helped me.   And then a member posted about Dr. Jernigan and his book (his first book) and I bought it (thinking it would be another whim) but  I was desperate and said to myself "hey, what do I have to lose?" and lo and behold, that protocol did wonders for me and put me into remission for almost 4 years now.   I didn't expect it, I didn't have any hopes and it was such a shock to start feeling better from Dr. J's protocol. 
 
My view is one has nothing to lose by reading a book.  Hey, you may even get well like I did!! 
 
Good luck to you,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/9/2009 7:14 AM (GMT -6)   
Deejavu,

You hadn't posted in a while. How have you been?
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 6/9/2009 10:17 AM (GMT -6)   
Sorry to hear that yet another thing is not working out for you! I don't know why it is that way, but we are still praying for you and something has to happen!

Can you try the herbal approach? At least you will be doing something. Did you fill the Zithromax prescription? That might at least give you a start, and then try the herbs.

I'm not sure if my treatment was long enough or not, but to be safe I plan to take an herbal blend that is supposed to fight Lyme.

Hope you find something that works soon!

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/9/2009 12:57 PM (GMT -6)   
thank you all for your post and conserns. i wish i was able to read a book,but i havent been able to read in almost 2 yrs now. i have 20/20 vison but everything within arms reach is blurry. thanks to lyme. i did see some post on the herbal protocals and in my current state i do not have the fonds to spend $300 on them. this is why i was so mad at the ID who gave me the scrip for the z-pak with 1 refile. i do not have the fonds to pay for it.after telling him i only get 3 free screps a month.( i think he did this to keep me from haven them) it takes all my friends just to keep gas in the car for all the different Dr. appointments, and this isnt fair to them. my neightbot got me some kick-as immune yesterday. lord that stuff stinks but they say it works great. we shale see.
i go back to my nuero next month and i was see if he will treat me for lyme. shoot its my last shot at treatment in this part of Tx anyways. but i'm not holding my breath.

sad thing is i read ya'lls post and some of you doubt you have lyme do to your test showing negitive, but you have Dr.s willing to treat ya for it. then you have me who tested positive and i cant get treatment. dont ya find this so odd and a lil backwards. all i can say is i hope our battles will make it easyer for the next genersion to come, so they do not have to go tho all this bull.

thanks again, your in my prayers
   RD
                                                                                                                 
 
still looking for answers
 


Cooter1980
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/9/2009 1:26 PM (GMT -6)   
Sorry you've gotten bad enough to not be able to read - been there. But you're posts are clear and make sense - so (good or bad news) you're not too too bad yet.

I have had success with the protocols in Buhner's book. However, I had a one of the people he trained making the treatment choices.

This is probably rudimentary but have you tried ILADS website, they have a referral procedure. Also Columbia University's lyme and tick borne illness center was a great help to me.

www.columbia-lyme.org
Columbia University has a Lyme research/treatment group run by Dr. Fallon - this is the first place I would go for info and help.

www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Coinfections/dp/0970869630
I was first treated and helped tremendously by an acupuncturist trained by the author of this book: Healing Lyme Disease; by Buhner. A year later, I added a western antibiotic treatment from a doctor on Columbia University's Lyme educated doctors list and improved further - almost to pre-lyme health!

www.ilads.org/lyme_disease/about_lyme.html
ILADS - International Lyme And Associated Diseases Society

I also have more info and links on a profile here http://www.thedoctorstv.com/Cooter

Also if you go to the site, I have made a call for a lyme debate on the Dr's show. If you support the call for a public lyme debate - please add a post on the doctor's site saying anything!


http://www.thedoctorstv.com/forums/171-Feedback/topics/4462- We-need-a-debate-on-LYME-


If the link doesn't work, it is: www.thedoctorstv.com > Community > Message Boards > Feedback > "We need a debate on LYME!"

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/9/2009 1:59 PM (GMT -6)   
Cooter, i know i do not have the brain issues YET. and this is why i get so upset whenthe doctors blow me off, cause i do knwo its just a matter of time b4 i do have them. but what good if a brain if you have no body to go with it?
i also have lesions in my brain this was fond in march or arpil . and the pain is enough to drive anyone crazy. but then again your to tired to do anything. to me this is no way to have to live your life when something can be done to stop it. if only a Dr. was willing enough to give a rats a**. yes i am mad about it. thats the only thing i can do it rant and rave. sad thing is only ya'll here can hear me and understand me. btw, i did go to the site and you have to sign up to post.

i do not thinks its to much to ask from a flipping Dr. to treat someone who somthing they know full well it out there taking the lives of folks. to me this goes agenst the hipogratic oath. 1st to do no harm. well it is HARM to do nothing and pass the buck.
   RD
                                                                                                                 
 
still looking for answers
 


3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 6/9/2009 3:54 PM (GMT -6)   
Your story makes me cry - I hate that you have to suffer and no one cares. I have dealt with drs who don't give a rats ass. I will pray for you and hope your help comes soon.

Please don't give up...you have to fight no matter what.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 6/9/2009 6:52 PM (GMT -6)   
I feel really badly for you. That is terrible. If I were in your position I would treat myself either with abx bought from overseas (India) or herbs. THe herbs are more expensive but they do work when you take them in a high dose, which unfortunately, makes them even more expensive. I am using herbs now as I cannot tolerate abx any more. I am treating myself and doing well enough - better than ever actually.

I went 500 miles to another state to see an LLMD who gave me levaquin which caused tendonitis I cannot recover from. I felt like a cow in his office - no physical exam other than checking reflexes in my knees and lymph nodes behind my ears. I was given what he gives everyone and sent home. Every call was either a $200 or $100 consultation, even when I was reacting to the drugs. He took over a week to return my call when I was having muscle pain from the levaquin and then told me to continue taking it - which I did, just to have my tendons snap a week later.

Obviously I don't have the highest opinion of doctors. I would not allow myself to become so sick I feel I could die when I can treat myself. If I feel I need abx I will order it from India. I have heard of people that do this and go to the doctor periodically for a liver test, telling him/her that they are an alcoholic and need to check up on the liver. Desperate people do desperate things but these people are actually recovering and getting better. It is risky though because the drugs can be dangerous and you must be careful of interactions. However, my doctor did not follow up on what he gave me. He ordered $600 of lab work prior to treatment and then didn't even look at it. He never mentioned anything about checking my liver in the following months. Neither did my other doctor. I had to request it! So we often literally know and obviously care a lot more than they do.

Go through all the symptoms for each of the infections and determine which ones you probably have. Then start some kind of treatment yourself. Best of luck to you, be proactive, dont give up, and get well!

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 6/9/2009 7:24 PM (GMT -6)   
RD - Why not go the herbal route? You don't need a doctor to do it. There's cat's claw -- and that's readily available.

The other thing I'd like to tell you is that the average treatment time for Lyme disease (chronic) is about 7.5 months.

You could share with us how to get well WITHOUT an LLMD loading us up and killing our insides with ABX!!!


Just a thought. I'm sorry this is happening. Keep looking for answers. We feel your pain.
Bit June 08.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/9/2009 7:50 PM (GMT -6)   
RD, I am so very sorry for your situation and all your pain. This is all so wrong! We WILL find an answer, we WILL. Many prayers are being said for you and a miracle, please know that!

Did I understand you correctly, that when/if your disability goes thru, you will be able to look for other Drs? As several others have said, MAYBE, HOPEFULLY, SOMEHOW, there will be a blessing in disguise. Maybe you will end up w/ the right treatment and Dr for YOU. We will all pray for that! You have your positive test --- you should probably make a few copies of it and keep at least one in a safe place. Could prove to be very valuable one day.

I'm going to post a couple things I've come across. We will keep searching until we find the answers!
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/9/2009 9:44 PM (GMT -6)   
Hey girl, love you, darn that you cant do anything w th lawyer. I like this herbal information. Although yeah it does seem expensive. I wish you were near pensylvania it is a good place for us. I know that god will present w something for you. You are a wonderful sweet woman. TTYS -V

Thats the way to think LymeKiller. Just be careful.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 6/9/2009 10:09 PM (GMT -6)   
On a few other blog sites for Lyme, there's a few Texans posting. They are in Dallas though -- that's where they get there treatment.

Lone Star tick transmits something very similar to LD. Or maybe it is just another variant of this crappy disease we call Lyme from Old Lyme Connecticut.
Bit June 08.


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/9/2009 10:57 PM (GMT -6)   
Thank you all for your conserns and thoughts. let me start with i now live in the panhandle of Tx.only been here 3 yrs. last time i remeber beeing covered in ticks was in NJ. that was about 2000 to 2002. i have lived in all but 7 states in the last 10 yrs and all but 4 in my life. shoot i may have 1 infection from each state..lol i'll never know tho as the flipping Dr. havent even thought of coinfections.and belive me i have told each and every Dr. this too. i have not lived in there magic bubble.
now if i had the means i would do the other protacals and glady let others know how they do w/out a flipping Dr. but when your not able to work for 3 yrs you and money are not friends. i have no income at all. till my disablety goes thro. and as most of ya know its iffy at best. most have to go thro 2 yrs of bull to get it. i do know if lyme is listed for reson you will not get it. glad i filed b4 i was tested.

i did another post on lyme sx and checked each one i have, think it was over 50 out of 76.wouldnt think its good.
i did get the info for a recerch being held in Md, if i can find a way there and they take me in, i can get treatment and they will pay for trips after the 1st one. its a long shot.but worth trying. some of you who live close to Md my want to check into it also.only thing is you can not be on abx for at lest 30 days b4 hand.
in the last 2 months since my nightmare started i have sent letters and made phone calls to everyone and anyone i could think of. how may give a rats-a**. so far to noavile. and as you can tell i am not the best at typing or spelling. this is the most i have ever done in my life.when you grow up with dyslica you learn to hide it well, long b4 they taged it ADHD. i was bone with it. its not doe to lyme.

please do not cry for me. and thank you for your prayers. i cry for the others who i know are going thro the Dr. bull battles. and i am stronge enough where some are not. this is what keeps me going. i go back tomorrow for blood work due to the celebrex and liver check.and then see my PCP for results the following week. when i see him. i am going to explane to him what the ID did and beg him to treat me. shoot even tho he doesnt understand or know about lyme. i can pray he will give me what i need if i tell him what to do. or i can stand up in the middle of the office and yell at the top of my lunges for a Dr. there to treat me. there is 5 of em in the same building. all i need is 1 willing Dr.

sorry for the book. thanks again, your in my prayers
   RD
                                                                                                                 
 
still looking for answers
 


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 6/9/2009 11:04 PM (GMT -6)   
RD, I am so sorry you are going through all of this. It's just so unfair and I wish there was something I could do for you. With any luck your disability claim will be approved and then maybe you can try the herbal route. Also, if you can then go to another doctor I would give it a try and tell them you spent time in a lyme infected area. I normally don't believe in lying but you need to do whatever is necessary to get the treatment you deserve. .

I'm fairly new to the lyme community but am hopeful that changes will come soon. How in the heck can't they?

You have many people praying for you and hopefully a miracle will come your way soon. You certainly deserve it.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/9/2009 11:15 PM (GMT -6)   
Thank you scorpio, funny thing is i wouldnt be lying to them. i have lived in high lyme arers when in NJ the nump ticks would cover me and the dog when walking thro the woods, witch we did every day rain or shine. as huge as he is he has to have room to run..
here is my delima i am on a county health program. i have to go to who they say go to for them to pay for it. i have no choises. and then half the places here dont take this kind of covage either, so i am stuck in the ruts for now. like i said 3rd world countys get better treatment on USA dollars then we do here.
my granma always said clean up under your own front porch b4 clearning up your neightbors. oh how true it is. i learned a lot from her and i also learned compasion for others thro her, her home was always open to anyone in need.
   RD
                                                                                                                 
 
still looking for answers
 


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 6/9/2009 11:48 PM (GMT -6)   
I like your grandma
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/9/2009 11:54 PM (GMT -6)   
thank you hun, i loved her very much. if she was alive today i wouldnt be going thro this now, she had more home remids then the books ya find about them today. i only rmeber some of em. she was half cherokee.sang me to sleep many times with there songs.
   RD
                                                                                                                 
 
still looking for answers
 


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4282
   Posted 6/10/2009 8:02 PM (GMT -6)   
Hi RD,
 
Just a thought..   Can you afford $48.00 a month?  When I first started Dr. J's protocol that is what I started with, his Borrelogen.  And I felt such a huge difference just from that 1 product.
 
Epsom Salts costs about $2.00 and Hydrogen Peroxide is not much either.  Between Detox Baths, Food Baths, and taking the Borrelogen, at least you would be doing something really good for yourself.  
 
Just a thought, you don't have to read a book, if you want you can e-mail me and I can explain more in detail. 
 
I believe things happen for a reason and just maybe, this might be a blessing in disguise for you as it was for me.
 
Hang in there, okay?
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 

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