I am looking for seasoned veterans who have had Chronic Lyme (issues being balance and walking)and recovered. Would you mind sharing your path to health? Protocols followed, when improvement was noticed, what worked, what you wouldn't recommend.
I am on month 7 and realize it may take years as I may have been infected for 6 or 7. I've completed 4 months IV Rocephin (2 gm w/ Zythromax for two months. 3 weeks Flagyl. Now Biaxin/Clindamyacin since end of May. Not expecting an overnight miracle just wondering if I will be going from a walker to a wheelchair or if using the cane again will be in my future.
Either way I'm committed for the long haul. My LLD is open to any combo. He said Mepron is next or maybe another IV/Port. Thanks for any insight! Suzy Posted by dmc (Member # 5102) on :
up for any answers...i'm in wheelchair right now and rehab suspended at time
Posted by Lymetoo (Member # 743) on :
All I can say is keep going!!! Read my story below.
Also... Go to General Support and read the success stories there.
Posted by TF (Member # 14183) on :
I had lyme, babesiosis, and bartonella (based on positive Igenex test results) for at least 5 years undiagnosed, perhaps 10 years.
I went to lesser "lyme literate" docs for about 2 years. They took insurance. They could not get me well. Then, I decided to study the Burrascano lyme treatment guidelines (found on the ILADS site) and went to hear him speak a few times. I decided that Dr. Burrascano knew a lot more than any of the docs I had gone to so far, and decided to find a LLMD who followed the Burrascano lyme treatment guidelines.
That was the key to my recovery. It took the new doc--the one who followed Burrascano--1 year to get me well. Now, it has been over 3 years and I am symptom-free, no meds, enjoying my life. I have the same life I had before this disease from hell.
My main issues were extreme fatigue, extreme muscle weakness, false menopause, and then numerous other symptoms as the years went on including brain and nervous system issues, a major central nervous system event, etc. etc.
I strongly believe in the Burrascano treatment guidelines. I believe the doc and the patient need to do everything Burrascano recommends. The exercise program is a must once the patient is able to do it. My doc said that I would never be well unless I did the exercise program. It boosts the immune system.
That's my story and that's my advice. I have since sent many, many people to a local doc here in Maryland who follows Burrascano and studied under him, and nearly every single one of them has recovered and finished their treatment in 1 year. The one failure is an alcoholic. Per Burrascano, that is a guaranteed treatment failure.
So, I would say, become educated about your disease so that you are able to evaluate your doctor's treatment. You want treatment that lines up with the Burrascano guidelines. If your treatment doesn't, move on. Best to find a doc whose practice is exclusively lyme disease, who has a great track record of getting people well. Don't waste your time with lesser docs. The key is the doc.
Posted by lynnic86 (Member # 3634) on :
I have to agree that a lot of the success depends on the doctors. I myself have not found a LLMD that is able to treat me yet. I saw one for 3 years and was treated by him with a variety of oral and IV meds but I am still very sick and not getting any better.
I would like a list of the docs who follow the Burascano protocal and who also accept insur, if there are any. Please email me personally if this information is available. thanks
Posted by KS (Member # 12549) on :
TF-
Hope you check back...tried sending you a PM but your mailbox was full.
Anyway, one of the questions I wanted to ask that I'm sure others would be interested in is what was your treatment protocol for that year? What meds., dosages, duration, etc.
I'm so thrilled to hear of your success story....congrats to you! It is certainly inspirational for those of us here struggling to get to where you are!
Thanks! Kristin Kristin
Posted by lymer (Member # 16352) on :
Hello TF,
I just read your reply and it brought tears of joy to my eyes. Yours is probably the most encouraging story I've ever read about the potential for us all to get well. I have had lyme, babs, and erlichia for five years now undiagnosed and untreated (I was recently diagnosed 4 months ago). I unknowingly gave this disease to my son when I was pregnant with him (he's 17 months old now). We're both being treated currently. You seem very familiar with Dr. Burrascano's guidelines. I was hoping you could clarify some things for me. I have read his guidelines several times and am still confused about a few things. Mostly about who he recommends to get IV antibiotics. He states that for late disseminated disease adults should be started on IV therapy. He defines late disseminated as: "present greater than one year, more severly ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity." Do all of those factors have to come into play together for a patient to be considered "late disseminated" and to need IV therapy? He defines early disseminated as" Milder symptoms present for less than one year and not complicated by immune deficiency prior to steroid treatment". I have had lyme for five years, but I think my symptoms might be considered "mild" and I don't believe I have a comprimised immune system (cd57 test by LabCorp came back 204). In your oppinion should I be on IV meds? I was on bicilin injections. Now I'm on Zithromax and Mepron (for babesia). As far as I know, my doctor does not have any plan for me to ever by on IV. Is this a mistake? Also, in a different thread, I asked about my cd57 test. Some people replied that they think my cd57 is only high because I have coinfections. Do you know about this? Will it go down after the coinfections are gone or is it a legitimate number meaning my immune system is indeed doing well even though I have lyme. Sorry about all the questions, you just seem extremely knowledgeable and so I wanted to "wrack your brain".
Posted by Lymetoo (Member # 743) on :
Lymer... Could you please put some space between your sentences?
Thanks! I'm sure I'm not the only one who wants to read what you wrote. Posted by lynnic86 (Member # 3634) on :
Lymer: I also have a child who is 20 months old but we have never had her tested. How did you find out your son got LD from you? I have 3 dgtrs ages 16, 9 and 20 months and have been sick for over 20 years. The older two were tested with the Elisa test when I first tested positive but the baby hasn't been tested.
Just curious for info lynne Posted by lymer (Member # 16352) on :
Hi Lymetoo,
Sorry about that. I forgot to put spaces. I
hope this is better.
Hello TF,
I just read your reply and it brought tears of
joy to my eyes. Yours is probably the most
encouraging story I've ever read about the
potential for us all to get well. I have had
lyme, babs, and erlichia for five years now
undiagnosed and untreated (I was recently
diagnosed 4 months ago). I unknowingly gave this
disease to my son when I was pregnant with him
(he's 17 months old now). We're both being
treated currently. You seem very familiar with
Dr. Burrascano's guidelines. I was hoping you
could clarify some things for me. I have read
his guidelines several times and am still
confused about a few things. Mostly about who he
recommends to get IV antibiotics. He states that
for late disseminated disease adults should be
started on IV therapy. He defines late
disseminated as: "present greater than one year,
more severly ill patients, and those with prior
significant steroid therapy or any other cause
of impaired immunity." Do all of those factors
have to come into play together for a patient to
be considered "late disseminated" and to need IV
therapy? He defines early disseminated as"
Milder symptoms present for less than one year
and not complicated by immune deficiency prior
to steroid treatment". I have had lyme for five
years, but I think my symptoms might be
considered "mild" and I don't believe I have a
comprimised immune system (cd57 test by LabCorp
came back 204). In your oppinion should I be on
IV meds? I was on bicilin injections. Now I'm on
Zithromax and Mepron (for babesia). As far as I
know, my doctor does not have any plan for me to
ever by on IV. Is this a mistake? Also, in a
different thread, I asked about my cd57 test.
Some people replied that they think my cd57 is
only high because I have coinfections. Do you
know about this? Will it go down after the
coinfections are gone or is it a legitimate
number meaning my immune system is indeed doing
well even though I have lyme. Sorry about all
the questions, you just seem extremely
knowledgeable and so I wanted to "wrack your
brain".
Posted by lymer (Member # 16352) on :
Hi Lynnic86,
I found out that my son has lyme after I got a
lyme diagnosis four months ago. I realized at
that time that I had been pregnant with my son
while I had lyme so for me it was a no-brainer...
he had to get tested. I had him tested for lyme
and coinfections through IGenex. The ELISA
test is not reliable and I would not assume
your children don't have lyme just because
that test was negative. I had the ELISA test
done on myself two years ago and it came back
negative (I've had lyme for five years). Go
to a LLMD and have your children tested again
with the IGENEX test. The sooner you know, the
better and if their tests are negative then
you can be relieved and not worry about it.
Posted by lynnic86 (Member # 3634) on :
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