Hi all, this is my first post in this forum but i'll be checking through a bunch of the threads already created here now that I've discovered it.
Went through a period last summer where I had a ton of really odd symptoms that all seemed to come on at once. Numbness, tingling, muscle spasms, fatigue, some skin issues where i was always itchy and when i did itch my skins would get really red, peteachie also.
After tons of testing (blood tests/mri/emg/etc) i finally found a neurologist that happened to test for Lyme and was positive on the western blot IGG (bands: 18, 23, 28, 39, 41, 45, 58, 66, 93 all present). Was sent to an infectious disease doctor and given 3 weeks worth of doxy.
Felt better for a few months but over the last 6 weeks been getting tingling again, muscle aches, pain in shoulders/neck, fatigue, pain under armpits, swollen node on my neck.
Was just curious if you guys had any advice, been back to dr's but they don't seem to want to give me anymore antibiotics. started the buhner protocol 2 weeks or so ago, hoping to see some results there.
Posted by dal123 (Member # 6313) on :
Get thee to a LLMD! Not to a ID Duck !😡
Posted by joemateo222 (Member # 47665) on :
would love to see an LLMD but affordability is an issue, which is why I'm hoping the buhner stuff will help
Posted by sixgoofykids (Member # 11141) on :
You might be helped by herbal treatment. It is a valid option. Just read up on it. I believe Buhner also has a place where you can ask questions about his treatments.
As you likely know, you were under-treated. It's sad that they don't treat hard to prevent chronic Lyme.
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet! PM sent with some suggestions.
One of the top Lyme-Literate doctors, Dr. C, wrote an explanation for the different bands on the Western Blot you tested positive for:
"In my clinical experience, if a patient has symptoms suspicious for Borreliosis, and has one or more of the following bands, there is a very high probability the patient has Borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93."
You were also under-treated for Lyme, not surprisingly by an Infectious Disease doctor.
Read the following link from Lymenet titled, "Important Information About Lyme and Co-Infections":
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Scroll down for financial help, etc., available from several sources.
The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%. View on www.lymetap.com
The top LLMD, Dr. H, has written a book entitled, "Why Can't I Get Better?". It is an excellent source of information.
Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
View "Under Our Skin" for free on www.hulu.com Posted by joemateo222 (Member # 47665) on :
greatly appreciate the responses and information. will check it all out. seems my lymph nodes have gotten slightly worse since starting the buhner protocol so maybe it's stuff dying off, i can only hope.
Posted by joemateo222 (Member # 47665) on :
got a bit of a rash on my stomach, chest area, and my skin has been ridiculously itchy over the past few days. can't tell if the rash is just a scaly area or rather a bunch of small pimples.
Posted by me (Member # 45475) on :
You mentioned finances are an issue, as they are for most of us. 😕 That being said, if there is any way you can go to a LLMD, please do so ASAP. You want to nip this in the bud as soon as you can.
Posted by joemateo222 (Member # 47665) on :
yeah I'm trying to save up some money to go to an LLMD. hopefully can do it sooner rather than later. meantime I'm trying the buhner stuff, not seen too much results yet but trying to give it time to work.
Posted by joemateo222 (Member # 47665) on :
a question for those with chronic lyme. how many of you have persistent lymph node issues? the ones under my armpits have been sore for about a month and i have a slightly swollen one on the side of my neck. had a soft tissue mri a week ago and they said they were just reactive/responding to infection.
Posted by Robin123 (Member # 9197) on :
The Buhner herb, red root, is supposed to be good for lymph issues.
If you have sore lymph nodes all the time, it could be a sign of bartonella. You could check out the symptoms for that and see whether you match any of it.
There's other things to take, like magnesium for muscle spasms, etc. The Burrascano guidelines discusses supplements to take.
Posted by joemateo222 (Member # 47665) on :
purchased and buhner herb and checked the bartonella symptoms which seem to match a lot of mine. going to check out the burrascano guidelines now.
i'm constantly worried all the time with symptoms waxing and waining. lymph node issues make me worry about lymphoma even though there's not a shred of evidence to support anything like that.
Posted by Jordana (Member # 45305) on :
I had swollen lymph nodes and a bright red face and rashes, and conjunctivitis, right at the beginning of my illness about 15 months ago.
I think it's Bartonella too. That usually means there's Lyme but Bart is "on top"-- on the move. Buhner has a whole protocol for this but the most important herb for bart in his arsenal is Sida Acuta.
Posted by joemateo222 (Member # 47665) on :
quote:Originally posted by Jordana: I had swollen lymph nodes and a bright red face and rashes, and conjunctivitis, right at the beginning of my illness about 15 months ago.
I think it's Bartonella too. That usually means there's Lyme but Bart is "on top"-- on the move. Buhner has a whole protocol for this but the most important herb for bart in his arsenal is Sida Acuta.
how long did your lymph issues last before they cleared up?