Really need your help

Oh hon! you are on the right track! I am soooo sorry you are having so much pain and so on!!! hang in there...

Take Neurto-Antitox formula now. It will help with symptoms. I think 3 droppers 3 times per day and re assess it when you get the book. I am guessing for you on dosage.

Dr. J himself told me to take it based on symptom severity and to take up to an ounce per day as it is quite safe.

Take borrelegen or lymogen now also. 2 droppers 2x per day. Then re-assess when you get the book.

Detox! Must detox..this is what helps the symptoms as they are caused by toxins!

Keep up the epsom salt/hy per baths...dailly and take one day off. I still do them several times per week.

Consider enemas and/or colonic therapy. This is necessary for me..even if bowels move regularly, this helps the toxins clear.

Drink at least 2 quarts of clean water per day every day. Very important.


Igenex: I think it is good to get this test.

You must find an LLMD or LLND, however. Especially with chronic lyme.

Travel if you have to. Ask friends, family, co-workers to take you to the doc. Or a local person who has been ill and knows what it is like to need help.

And...I would consider going to Hansa. I know it is expensive and seems overwhelming. I wish I had gone years ago. Would have saved money and time in the long run. They have a loan program called Care Credit. I took out loans and asked family for help. I was willing to do whatever it took to get well.

Once you are there, it is very easy. The hotel is right next door, they shuttle you to grocery store and airport and you can make your own food in the hotel room which has a kitchen.

Good luck and hang in there!! you can call or email me if you would like and think it would be helpful.
Nancy

Wow you poor thing. Have you had an MRI of the brain? I have the tingling and burning in my legs also though not nearly as bad as yours.  What you may have is called radiculopathy caused by Lyme which stems from the spine.

The leg weakness could be Lyme encephalomyelitis which is supposed to be rare and stems from the brain. My legs feel tight and like lead weights so I'm suspecting this. I can walk..at least for now. Do you have cognitive issues like word recall?

The IGenex test is very good and so is the blood culture from Advanced Labs. It's vital you see an LLMD like the other posters mentioned to get proper treatment.

Thank you Nan, WW and Todd for your posts. Too late for the one dropper. I already took one dropper of Neuro-Antitox II Basic and one dropper of Borrelogen twice today; once this morning and once about an hour ago. I wasn't given a choice when I ordered the Perfect-7 Protocol Good; this is what came in the package. I'm certainly not feeling any worse off for having taken this amount.

No Todd, I have not had an MRI of the brain. They will not do one without a referral and the only doctor I have at this time is my PCP through my insurance who refuses to discuss it with me.

I am seeing an infectious disease doc this week who agreed to sign off on my Igenex test. I doubt he is LL, but at least I'll get my testing done.

As much as I would love to go to Hansa, $10,000 might as well be a million. I live on Social Security Disability and had to declare bankruptcy. No one is giving me $10,000.

As you all know, finding an LLMD is very hard; finding one who actually helped someone is even harder. I guess people want to protect their doctors. Then there's the question of do I find an LLMD or and LLND?

Then there's the problem of sitting in a car for 5 hours which I'm willing to try; I would have to turn the back seat into a bed if I had to.

My time on the computer is also limited by the amount of pain I'm in. So this is happening in slow motion as compared to others.

Thank you all again for your input.

RE: " I was diagnosed many years ago with fibromyalgia and chronic fatigue as well as severe spinal stenosis and scoliosis and I take very strong pain medication. When these attacks come on, the meds barely help. "

I'm a newbie, but have learned enough to become angry with the medical community that package and labels 'symptoms' as a disease; and since they have labelled it (usually as a dead-end street), wish us to believe their 'package' as presented is all that needs to be known.
I also become angry when I see advice given here as to the taking of "tinctures, powders and ointments' which they fail to mention, are to be used as a DIAGNOSTIC aid... there is NO evidence here necessarily given as a frank spirochette infection.

So, before proceeding:
a) Just what 'strong pain medication' are you refering to, and what dose and scheduling?
b) What reaction do you have to anti-inflamitories? (NSAID's such as Ibuprofin, Celebrex, Aleve, etc.)
c) Have you EVER had your head x-rayed, tomographed, MRI'd when, just prior to the procedure, they placed dye in a vein?
d) When you 'smile' in the mirror, are both sides of your mouth lifted evenly? If not, is this typical, or relatively new?
e) Have your teeth (say, all your front teeth) ever hurt at the same time?
f) The 'soaking' in the (tub); epson salt thing MAY be a heat pallitive (from the warm water); OR it could be the only place you sit in which you relax with your spine in an alignment which relieves pressure. Please determine this, by putting a thick blanket down in the tub, and relax on it for awhile, just as you would if it were a tub full of epson salts - and try to keep warm throughout the simulation. What does this accomplish if anything?
g) Do NOT take a 'milkshake' of 'tinctures, potions, powders - etc.; move through their application slow enough to figure out what actually had impact, and what didn't.
h) IF you've been woken up at night with episodic events, no matter how brief, please describe. An example might be: someone' playing piano' on your spinal muscles for example. Hot or cold sweats don't count.

Try to understand clearly the difference between treating symptoms, and treating a 'root cause'; many here do not, and therefore are doomed to a life of tinctures, potions, and powders... IMHO. Also, there is BIG money in treating just the symptoms, and those 'interests' are here in $pades. In the very 'best' of medical double-blind tests, there is a 60% reported 'slight-improvement' with placebos.
Your spinal damage will probably never fully recover;- pinched nerve symptoms as a result may need sorting out from all the other symptoms. I know the above presents a lot of questions, but if you include the (letter), we can know what you are addressing.

Jup,
Thanks; that helps answer some things...You know: just why you've posted here a couple of times over the past 10 years... and remain clueless.

Treatment choice is incredibly personal.

We are here to support one another and must respect the choices our members are making.

Please refer to the forum rules for further clarification or email me directly.

Thank you for understanding.

I just want to respond to Jupiters original message because it sounds like you are having a really rough time, Jupiter.

You are absolutely right to believe that this is chronic lyme. As you probably now know, many people originally given a diagnosis of CFS or Fibro. actually have LD as the root cause. Good for you for continuing to search for answers!

I'm sorry that you are in such horrible pain. Make sure that you are detoxing. Do take it slow though because if you detox too much as one time it can actually kill the bacteria and cause more symptoms from herxing, something that occurs when the bacteria dies and releases toxins.

I believe that it is worthwhile to have the IGENIX test by the ID Dr. First off, if it is positive, the ID Dr. may start you on short-term abx. so at least you will be having some treatment while you try to get to a LLMD. Also, then you will already have had the test done when you see a LLMD.

What state do you live in? You said that you have names of LLMDs? I would recommend calling each one and asking them these questions:

Are they ILADS trained?
How long have they been treating LD?
What are there recovery success rates?
Are they able to be contacted between appts.? Will you be charged for contact between appts.?
Do they have a holistic approach to treatment?
How far out are they scheduling?

Then, compare and choose the one that you think will best be able to treat you. LD and co-infections are very complicated to treat so you want to make sure that you're seeing a good doctor that knows what they are doing.
Go ahead and then schedule with the best one that you can get to. Many LLMDs are scheduling many months out.

Then, like someone else mentioned, find someone to take you. Do whatever you can to get to the LLMD ASAP. Have the person carry you to the car if they need to. This is a time when you need help and don't be embarrassed to ask for it. This is your life and you deserve to get better!

Also, look into Stephen Buhner's herbal protocol. He has a book out and a website that is updated with his current treatment guidelines.

You will get better. I know it doesn't seem like it now, but it's NOT hopeless. It will take time and be a long journey, but with the right LLMD and treatment, it will happen. I heard an audiocast by a leading LLMD and she said she's seen people go from blind to seeing and bedridden to running and that every patient that has stuck with treatment has gotten significantly better. You can do this!

Good point Marigold. Yes, Jupiter, many LLMDs will do follow-ups via phone. They understand how sick their patients are and how hard travel is. They will require the first appt. to be in-person.

Hi again Jupiter,

I think you are wise to just concentrate on Dr. J's protocol right now.  There is alot involved in this protocol besides taking his botanicals.   The detoxing itself is a big part of it.  Don't underestimate the power of detoxing as that's more than half the battle in this disease.   Those toxins can make a person feel really sick. 

Please don't get overwhelmed, keep it as simple as you can.

As far as testing, even though a positive lyme test may help many (I wanted the test), it really comes down to the symptoms and to me it sounds like you have many of the lyme symptoms.

Also, I think that's wonderful that you took a detox bath last night and woke up without any pain.  I did e-mail you and I hope you have a peaceful night and wake up with no pain again. 

Sweet dreams,

Denise

Yes Justme, I agree. This disease and it's symptoms seem to change from one day to the next for me lately. For years my symptoms were excruciating leg and back pain, exhaustion, muscle weakness, brain fog, depression and anxiety. The latest addition has been my eyes which burn and run all the time; nose runs all day long. I get burning which starts in my throat and works it way down through my chest, stomach and vagina (don't mean to make anyone uncomfortable; but what else can I call it??) My skin also gets hot and I can swear I have a fever, but I don't. When this happens, it doesn't last more than an hour or two, then diminishes, comes back, diminishes more and eventually stops. So these are not separate symptoms; they happen together at the same time (7 to 8 pm) every day. Yesterday I was actually awake most of the day. Today will be spent sleeping.

I agree about only being able to do what we can afford... like we have a choice. I've started Dr. J's protocol as I know people who have done very well on it. So I'm taking life one day at a time and praying to God for strength to get through this.

Prayers,
JupiterGma

Hi again Trav,

First, thanks for keeping your eye on this thread. Each and every one of us is suffering through their own journey. I choose to believe that most members are here to offer support and encouragement. Those are the posts I pay attention to.

I just want you to know that I won't let the labs controversy, or anything else for that matter, get in the way of my recovery.

I brought it up because it's a money issue to me. I'm not starving but I certainly don't have hundreds of dollars right now to spend on a test that more than likely won't prove anything.

I think you know I've started on Dr. J's protocol and I think my money is best spent right now on sticking with it. I wasn't sure what to do as they forgot to send the book; but DeeJavu was kind enough to email me the protocol. And I'm dry brushing, taking my detox baths and getting lots of rest. My Mom bought me a great juicer and I can't wait to get going with that!

I'm working up the nerve to do the coffee enema.. LOL.

Sending you hugs and prayers; to your husband too, as I know you're going through a stressful time.

JupiterGma

Hi Jupiter,

I was scared to do the coffee enema's in the beginning too.  So I did a mini-test drive before I bought the enema bag. 

I bought those disposable Fleet enemas and emptied one out.  I then bought the organic coffee and followed the instructions in Dr. J's book and filled the empty fleet enema with the organic coffee...  I said to myself, wow, this is not bad at all!  It sounded worse than it really is.   That's when I bought the "real" enema bag and started doing the full-fledged coffee enema's and I still do them.

They say that most diseases really start in the colon.  

http://www.naturalnews.com/038429_health_benefits_coffee_enema_detox.html

Hope this helps!

Denise