treatment options

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prayingmom
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/2/2008 12:23 PM (GMT -6)   
For a year and a half I have been trying to educate myself on Lyme disease. I've read about every book published. I really don't like the idea of antibiotics (especially IV), as they open the door to other problems like serious infections, imbalances in intestinal flora. and stress on organs. It just seems for some it leads to more drugs to treat new problems and many have said once they stop them within weeks the symptoms return. I recently read David Jernigan's 2nd edition book on treating Lyme with biological medicine. Has anyone tried his protocol? It sounds interesting to me, but I'd love to hear feedback from someone who has tried it. Many thanks!

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 10/2/2008 6:26 PM (GMT -6)   

Hi prayingmom, welcome to the board!

How long have you been sick?  Have you ever been treated? 

Below is a Lyme symptom list.  You can have any combination of symptoms. 

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It iss very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.    Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.  Have you been tested for these?

If you need a doctor recommendation, you can email me at ko_@bellsouth.net 

There have been some recent posts about Dr. Jernigan's treatment. I tried part of his protocol, and it did not do anything for me.  There are many different protocols to treat Lyme, and what may work for some people may not work for others.  Some people do get well on antibiotics.  Some other natural protcols include the Cowden Protocol, Zhang Protocol, the protocol from "Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections" by Stephen Harrod Buhner.  Some doctors incorporate both types of protocols in their treatment.

If you need a doctor recommendation, you can email me at ko_@bellsouth.net  

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton M.D.


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 10/2/2008 7:58 PM (GMT -6)   
Don't forget that in a site like this you'll find the people with the biggest problems. I am in no way trying to minimize anyone's illness. If you get sick, are diagnosed with Lyme, take some meds and get completely or mostly better, you generally don't go to a Lyme forum.

There are people out there that get better with antibiotics and stay better when they stop. There are people that take antibiotics, get better, then can't stop taking them without a relapse. Then there are those that take antibiotics and never see improvement. You don't know which category you fall into in advance.

Yes, I took antibiotics for years including 3 weeks of IV. For a few years, I'd relapse within weeks whenever I stopped. I was unable to work or take care of myself or my kid during this time. Eventually I was able to stop taking antibiotics without relapsing. I've been off meds for about 12 years and I haven't relapsed.

To be honest, I never got back everything I lost either. I don't know if I still have some tick disease or it's just permanent damage. I can function and take care of myself and my family. I

I believe that the years of antibiotics helped me a lot. You always gamble when you take any medicine.

prayingmom
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/2/2008 9:59 PM (GMT -6)   
Thank you ticker and dagger for your advice! I am pretty educated and know most of what you've said. The two most recent books I've read are Cure Unknown and Kenneth Singleton's book. His was one of my favorites as far as his incorporation of all aspects of treatment: medicinal, supplement supportive, detox, diet, exercise and emotions. He is very encouraging.

It is for my son that I am inquiring. He was bitten 9 years ago (in NC) and living is south FL the doctors were unaware. This happened just before the onset of puberty and we weren't sure if that's what hit or something else, but the son we knew changed drastically. Once we had him tested we learned he was very sick. He had Lyme, babesia, bartonella and erhliciosis. He has been treated some with antibiotics and the erhliciosis is gone. Fry labs show babesia and bartonella have been greatly reduced, but still there. We used a very knowledgeable ILADS doctor. We recently consulted with two other ILADS docs and they both want to put him on IV Rocephin, pulsed with flagyl for six weeks and then see where he is. They say he will most likely need to do that for a min. of three months, most likely 6 months or more. Another woman in my neighborhood has same doc and doing the same thing. She, however, cannot take the flagyl again because of raised liver enzymes and also has to now take difflukin(SP) and something else because of intestinal imbalance caused by the antibiotics. Her symptoms did come back several weeks after stopping, too. You're right though, everyone is different. Some get well, some don't.

I'm just trying to explore options and each person has to decide what they want to try. Oh, the other thing that scares me about the antibiotics is getting septis. I read an article in the Public Health alert lyme paper. It was meant to educate and not scare, but it scared me! My son is away at college, he lives alone in a secure apt. building and as fast as that can apparently hit, I'm not sure someone could get to him in time. The staff writer who wrote the article actually contracted it twice! Is that unusual?

Well, thanks again so much. We have an appt. Oct. 10th to discuss IV treatment near his college town. In the meantime, if anyone has done the whole Jernigan protocol I would love to hear their experience. I think I saw someone say it helped them on this site, but I can't remember her name. :( Guess I'll go back and look! Best to you!

runningiri
Regular Member


Date Joined Jan 2008
Total Posts : 373
   Posted 10/3/2008 6:59 AM (GMT -6)   
Prayingmom,

so sorry to hear of the situation with your son. I completely understand your ambivalence regarding treatment options. I, myself, have done myriads of antibiotics (including IV's). They helped me in many ways and for 18 months I was very high functioning. Once I came off them, however, I did relapse. Perhaps I did not do them long enough or perhaps they just aren't the answer for me. Needless to say I have stopped taking the orals for now and I am headed to Wichita to see Dr. Jernigan on Oct. 12th. I'm hoping and praying to have some success but I am very nervous due to all the skepticism that I have developed over the years. I have been let down so many times by various treatment modalities. With that being said, I am going into my journey with Dr. Jernigan with realistic expectations. I also understand that whatever I do, it will take time before I can tell if it is working or not. I think what happens to many people with lyme; when something doesn't bring relief right away we tend to panic and are quick to say "this isn't working so I better try something else or get back on antibiotics" I know that this is how I feel many times. I agree with you in that much of what Dr. Jernigan says in his new book makes sense. I will keep you posted on the outcome of me appointment with him.

-Runningirl

jginkc
Veteran Member


Date Joined Jan 2008
Total Posts : 692
   Posted 10/3/2008 8:25 AM (GMT -6)   
I just started Jernigan's protocol after spending a week at his clinic. I have tried doing lots of detoxing with the baths and am doing the microbojen and neurotox cns/pns. It is too early to say if it is working for me or not. Dr. Jernigan does care a great deal and is kind and compassionate. But if you are looking for a miracle cure from someplace, I don't think those exist, no matter what type of treatment you get.

I think you'll have to find something you are comfortable with and stick with it. The fact you have a doctor there that wants to treat your son aggressively I think is a good thing. There aren't a whole lot out there that will.
Month 18 of Lyme and Bartonella
On Zhang, doing much better, but not there yet!

90% functional, feel about 85% of my former self.


prayingmom
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/3/2008 8:51 AM (GMT -6)   
Thank you, runningirl, for letting me know you'll be seeing Dr. J. I talked to him on the phone a few days ago. I'm ordering the protocol and my son will get started on it soon. I felt we should at least give it a try. Hpw wonderful you're going there! I think that's really important and we will try to do the same when we can squeeze it in. My son will start the detox parts of the protocol first for at least a week and will then start Lymogen because of the bartonella. His main complaint is great fatique. He needs much sleep and then a rest later in the day. He suffers from brain fog, says he used to think he was "smart", has cycling knee and hand pain, numbness and tingling in legs. He also gets depressed at times and has some anxiety, yet he is trying to complete college because he wants so much to move foward in his life.

I looked back and saw it was arcticablue that is on the Jernigan protocol and feeling really well! That's very encouraging. If one had to be on treatment for a lengthy time to get rid of the bugs, I'd sure prefer his over antibiotics.

We will stay in touch on our progress and thank you for doing the same. Our hopes and prayers will be with you on the 12th!


prayingmom

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4395
   Posted 10/3/2008 9:02 AM (GMT -6)   
Sepsis from IV access is possible, but usually is caused by poor technique. There are people who have an infection-free central line or PICC line for years. The secret to their success is very careful attention to proper technique in caring for the line and when accessing the line. I have had my PICC line (for TPN, not antibiotics) since the end of June of this year and have had no infections or signs of infections. The nurse and doctors are pleased with the careful attention I have paid to caring for my line. So while sepsis is a risk factor, it can be prevented with proper line care and accessing technique.

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).


prayingmom
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/3/2008 10:55 AM (GMT -6)   
Thank you for the encouragement regarding the pic line. I guess when someone has the infection happen twice you never know their habits or their environment. One doctor wanted to do a peripheral IV, the other the PICC line. I guess the risk is present with either? With the PICC he would be stuck less and I can see over time where that would be better. Is the insertion difficult? I'm not familiar with what TPN stands for, but I see your plate is full. Wishing you good thoughts and healing.


prayingmom
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