I am almost 50, I am as.bitten by a tick in second grade. I have had Lyme symptoms my whole life. I was diagnosed when I was 42. I was very ill by then. I have been seeing a doc in DC who saved my life. A year and a half ago I started to finally come out of it somewhat. After being bedridden for two and a half years I thought this is great. 8 months ago I decided to stop treatment. My doctor just found out this past November. Needless to say they were not happy. I have slowly been feeling more and more Lymie. I have been having a lot of days I need to do nothing but rest in bed. My spine feels like it is on fire. All my joints ache. Nothing seems to help the pain which is typical for Lyme right? Oh did I mention I have six kids at home? It's not so easy to drop off responsibilities. I feel very guilty that my family is doing without me again . I hate Lyme disease. I don't know if I have the strength to do this . I known I am not going all the way back to being bedridden but this sucks. I don't know what to do! I don't know what supplements to take. I feel lik my doc is just following a protocol and not looking at me personally. So I am reluctant to go back. I need some help, some answers and some support from people who understands. My husband is supportive but doesn't fully mean understand where I am at.
Posted by TF (Member # 14183) on :
Breaking up the above post so all can read it:
I am almost 50, I am as.bitten by a tick in second grade. I have had Lyme symptoms my whole life. I was diagnosed when I was 42.
I was very ill by then. I have been seeing a doc in DC who saved my life. A year and a half ago I started to finally come out of it somewhat. After being bedridden for two and a half years I thought this is great.
8 months ago I decided to stop treatment. My doctor just found out this past November. Needless to say they were not happy.
I have slowly been feeling more and more Lymie. I have been having a lot of days I need to do nothing but rest in bed.
My spine feels like it is on fire. All my joints ache. Nothing seems to help the pain which is typical for Lyme right? Oh did I mention I have six kids at home?
It's not so easy to drop off responsibilities. I feel very guilty that my family is doing without me again .
I hate Lyme disease. I don't know if I have the strength to do this . I known I am not going all the way back to being bedridden but this sucks.
I don't know what to do! I don't know what supplements to take. I feel lik my doc is just following a protocol and not looking at me personally. So I am reluctant to go back.
I need some help, some answers and some support from people who understands. My husband is supportive but doesn't fully mean understand where I am at.
Posted by TF (Member # 14183) on :
I'll bet I can guess what doctor you are seeing based on your statement about him. (I am local to D.C. and know all the lyme docs in the area.)
My suggestion is to switch to a lyme specialist who takes a different approach. The doc you are seeing has not been able to cure you.
The doc I suggest is not far from D.C. Let me know if you want the name and lots of info about him. He follows the Burrascano protocol when it comes to antibiotics. So, you will NOT be pulsing the antibiotics, and you will be on more than one at a time.
You can do telephone appointments after first in-person appointment, so you only have to travel to him once every 3 months.
People from Pittsburgh and Ohio come to see him as well as folks from Ontario, NY, Florida, Texas, New Mexico, etc. Everyone likes him.
You can get in quickly also.
If you stop treatment before you have conquered these diseases, you will just continue to regress. Don't want that to happen to you.
I got rid of lyme, babs, and bart nearly 12 years ago now. I stick around LymeNet just to help folks find the good doctors. The doc is the key to getting rid of this horrendous disease.
Posted by stickymommy (Member # 24233) on :
Yes please message me the name
Posted by Lymetoo (Member # 743) on :
Moving to medical questions...
Posted by TF (Member # 14183) on :
I sent the name.
Posted by ilovedogs (Member # 48866) on :
I would follow the advice of TF and go to a dr she recommends.
I was sick like you years ago. I honestly never thought I'd get better. And I completely understand how hard it is to be a sick mom!
The good news is you can get better. I had a relapse this past fall, got back into treatment and am doing pretty well.
You can do this and you can get better
Posted by TF (Member # 14183) on :
Hey, ilovedogs! Great to hear you are now doing well!!!! I love it.
Keep on encouraging others. You have gone through it!
Posted by Lymetoo (Member # 743) on :
Good job, dogs!! Posted by AndyR (Member # 46432) on :
quote:Originally posted by TF: He follows the Burrascano protocol when it comes to antibiotics. So, you will NOT be pulsing the antibiotics, and you will be on more than one at a time.
TF, does Burrascano protocol not believe in pulsing antibiotics? My LLMD has me doing that currently.
Posted by TF (Member # 14183) on :
Burrascano has the patient take the antibiotics DAILY. See p. 18 where he gives the recommended antibiotics and recommended daily dosages:
The only exception in the Burrascano formula is if the patient is put on IV medication. Then, the patient can take the medication 4 days in a row and be off 3. See "CEFTRIAXONE TREATMENT," page 14.
"regular interruptions in treatment lessen the potential complications of intensive antibiotic therapy with ceftriaxone, such as biliary sludging and colitis."
Page 21 again explains pulse therapy. It is intended for IV therapy in which double the dosage is used.
So, if you are with a lyme doc who has you pulsing oral medications and you find that it is not helping you get well, one option is to switch to a lyme doc who gives patients oral meds continuously (daily) until the disease is extinguished.
I got well by taking my oral meds DAILY. No breaks ever. That is the Burrascano way.
Posted by AndyR (Member # 46432) on :
quote:Originally posted by TF: Burrascano has the patient take the antibiotics DAILY. See p. 18 where he gives the recommended antibiotics and recommended daily dosages:
The only exception in the Burrascano formula is if the patient is put on IV medication. Then, the patient can take the medication 4 days in a row and be off 3. See "CEFTRIAXONE TREATMENT," page 14.
"regular interruptions in treatment lessen the potential complications of intensive antibiotic therapy with ceftriaxone, such as biliary sludging and colitis."
Page 21 again explains pulse therapy. It is intended for IV therapy in which double the dosage is used.
So, if you are with a lyme doc who has you pulsing oral medications and you find that it is not helping you get well, one option is to switch to a lyme doc who gives patients oral meds continuously (daily) until the disease is extinguished.
I got well by taking my oral meds DAILY. No breaks ever. That is the Burrascano way.
I was originally taking my anti-biotics daily but not seeing any improvement so she decided to have me try pulsing. I've been doing that since September so I'm not sure that's doing much either. This is good to know though. Thanks.
Posted by TF (Member # 14183) on :
Then compare your dosages with what Burrascano says is required on page 18, "Oral Therapy."
For example, I took 1,500 mg of amoxi every 8 hours. That is a typical Burrascano dosage. (You also have to take probinecid with amoxi).
And, along with that, you must take a cyst buster like flagyl or tindamax.
If you are on just one antibiotic alone, that will not work because lyme can change form and successfully evade any one antibiotic. So, you must be on at least 2 at the same time.
See p. 12, "Combination Therapy."
And, if you are not on the HIGH Burrascano tyoe dosages, you will not be killing the germs.
You have to know a little about medical abbreviations to understand the Burrascano dosages on p. 18.
For example,
q8h = every 8 hours
bid = twice per day tid = 3 times per day qid = 4 times per day
mg/d = milligrams per day
Posted by ilovedogs (Member # 48866) on :
Thanks TF and Lymetoo-you are the best!!!
I would also recommend Burrascano's exercise protocol. It is soo hard to even contemplate exercise when everything hurts as well as experiencing all the other awful symptoms.
TF and others constantly recommend this and I ignored it my first time around. I am committed to it now and I have reached a new level of wellness.
So, take your antibiotics/herbs, clean up your diet and slowly introduce exercise if you aren't already doing it.
Posted by AndyR (Member # 46432) on :
Thanks so much TF! Knowledge is power
Posted by TF (Member # 14183) on :
Yes, good reminder.
Andy, if you are not doing the Burrascano exercise program, add it and see the difference.
It calls for 1 continuous hour of weightlifting every OTHER day. A full body workout each time. So, exercise each muscle group--arms, chest, back, abs, butt, and legs.
Use light weights and numerous repetitions so that you can do the full hour. If you have to work up to an hour, then work up to it.
This form of exercise will boost your immune system so that when you finish treatment you will not relapse.
It also drives the antibiotics deeper into the muscles, brings more oxygen to these parts of the body, etc. which all help to kill the germs.
Aerobic exercise is NOT allowed as it depresses the immune system for too long a time.
Expect to go to sleep after your 1 hour workout. I did mine in the evening. Then, a little later, I would want to go to bed and sleep.
The only way to stay cured of this disease is to get your immune system back to normal. My lyme doc told me at the first appointment that I would NEVER get rid of lyme if I didn't do this exercise program.
At first all I could do was 10 minutes because my main symptom was extreme muscle weakness. But, as I persevered, I started to see things change. It was very exciting for me because I had been so weak for so long.
I dreaded getting up from a chair or stepping up a curb.
Just read through the Guidelines and mark everything it says to do and then mark if you are doing it or not. See what happens.
Posted by terv (Member # 29410) on :
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