LymeNet Flash: Late Stage Chronic Lyme

LymeNet on Facebook

LymeNet on Twitter

Follow @LymeDiseaseNet

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive

The Lyme Disease Network is a non-profit organization funded by individual donations.

»	LymeNet Flash » Questions and Discussion » Medical Questions » Late Stage Chronic Lyme

UBBFriend: Email this page to someone!

Author

Topic: Late Stage Chronic Lyme

SuzyQ
Member
Member # 16011

posted

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 [hi]

Posts: 15 | From Menomonie, Wisconsin | Registered: Jun 2008 | IP: Logged |

dmc
Frequent Contributor (1K+ posts)
Member # 5102

posted

up for any answers...i'm in wheelchair right now and rehab suspended at time

Posts: 2675 | From ct, usa | Registered: Jan 2004 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

All I can say is keep going!!! Read my story below.

Also... Go to General Support and read the success stories there.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

TF
Frequent Contributor (5K+ posts)
Member # 14183

posted

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.

Posts: 9931 | From Maryland | Registered: Dec 2007 | IP: Logged |

lynnic86
LymeNet Contributor
Member # 3634

posted

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

Posts: 215 | From PA | Registered: Feb 2003 | IP: Logged |

KS
LymeNet Contributor
Member # 12549

posted

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

Posts: 561 | From mass | Registered: Jul 2007 | IP: Logged |

lymer
Member
Member # 16352

posted

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".

Posts: 63 | From Humboldt County | Registered: Jul 2008 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

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. [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

lynnic86
LymeNet Contributor
Member # 3634

posted

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 [confused]

Posts: 215 | From PA | Registered: Feb 2003 | IP: Logged |

lymer
Member
Member # 16352

posted

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".

Posts: 63 | From Humboldt County | Registered: Jul 2008 | IP: Logged |

lymer
Member
Member # 16352

posted

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.

Posts: 63 | From Humboldt County | Registered: Jul 2008 | IP: Logged |

lynnic86
LymeNet Contributor
Member # 3634

posted

Lymer:

Thanks for the info. I just found out today that

the LLMD that I saw for over 4 years doesn't

considered himself a specialist in lyme and when

he couldn't get me well he sent me off to someone

else.

I really need to find a good reliable LLMD in or

near Western PA. Any recomendations please email

me.

thanks

Posts: 215 | From PA | Registered: Feb 2003 | IP: Logged |

Printer-friendly view of this topic

The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA
http://www.lymenet.org/