posted
Hi everyone, I have googled everything Lyme related for the past 6 months and just need educated opinions.
My boyfriend who is a landscaper was diagnosed with Lyme in early September. We basically thought he was dying. Couldn't move. Terrible muscle, joint, and bone pain. I had to dress him and take care of him.
He was on Doxy for three months and Three months later in November he finally saw a Lyme specialist and was diagnosed with Babesia and Bartonella as well. He is finally getting better, thank god.
Once we suspected Lyme in September we stopped having sex just in case. I didn't want to get it, in case it was sexually transmitted.
Then, mid October, my stomach started bothering me, couldn't really eat anything. Got worse and worse until I basically could only eat chicken and vegetables and a few basic carbs. Had stomach pain, uneasiness, heartburn, and reflux all the time.
In January I cut out carbs completely. Just reintroduced complex carbs and those are fine. My stomach has gotten better, but if I deviate from my diet at all I feel like I'm dying.
I figured it was just a GI issue, but then in January I started having chest pains, then shortness of breath, and chest discomfort.
I also could not sleep laying down anymore. I have to sleep upright otherwise my stomach hurts, I have difficulty breathing and I get a very uneasy feeling.
I was sent to a cardiologist and had an abnormal stress test, (my heart beat changed) and a Holter monitor showed I had sinus tachycardia and sinus arrhythmia, and an extra heart beat. The dr said we will follow up with a stress echo (in 5 weeks!) to see what's going on.
I'm a 35 year old female. Heart problems out of no where? My primary always tells me I'm in perfect shape. Bloodwork always comes back great every year. No high blood pressure, no high cholesterol, no family history of heart disease.
But my last bloodwork just came back positive for IgM P23. Primary said its negative. But I'm finally just putting all of the pieces together. Maybe my stomach issues have been Lyme?
My chest discomfort and breathing issues are extremely uncomfortable and making me really nervous and upset. My boyfriend just says to start taking doxy until I see his Lyme doc in three weeks.
Opinions???
(breaking up the post for easier reading for many here)
[ 02-14-2017, 02:18 AM: Message edited by: Robin123 ]
Posts: 3 | From Little Falls, NJ | Registered: Feb 2017
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posted
Many think even having one positive band specific to Lyme is a positive. You are also describing lots of Lyme symptoms and you need to see the LLMD.
We all respond differently to treatments. I guess I'll wait and let people weigh in on whether they think you should start some doxy.
Nice that your boyfriend is getting better. You both really need to know about tick/bug protection, which I think starts with some really good repellent, plus understanding how you take precautions.
Posts: 13116 | From San Francisco | Registered: May 2006
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I see the LLMD in three weeks and I know she doesn't like doxy, but I just thought starting something is better then nothing in the meantime. The thought of Lyme carditis scares me.
We learned all about repellent and also got him clothes with repellent in it too after she educatated us about that. I'm glad I got a lot of knowledge beforehand by going with him to all his appointments with his LLMD.
Thanks!
Posts: 3 | From Little Falls, NJ | Registered: Feb 2017
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posted
One of the best resources for me has been the Lymeninjaradio.com podcast. Also, Dr. H's book, "How can I get better?" Just came out on kindle for $10.
You should definitely read the 2008 ILADS Burrascano protocols if you haven't already. They get posted many times a week on these forums on Lymenet by the admins, but a google search will bring them up also.
May the Lord heal you both.
Posts: 15 | From Houston, Texas | Registered: Dec 2016
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posted
Welcome to Lymenet! PM sent for CT, PA & MD.
Band 23 is Lyme-specific and IgM means it is a current infection. I was told by one of the top LLMDs, that one band is enough to have Lyme disease.
The bacteria which cause Lyme (Borrelia burgdorferi) like connective tissue and can affect the heart as well as other organs. It's possible you have additional infections which come with Lyme disease and can also cause the problems you are having, but I am not a doctor so you need to get to a good one a.s.a.p.
You both need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
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.
LLMDs are far and few between, unfortunately. You both need to go where they are.
Here are some quotes from old posts about NJ and LLMDs:
"There are NO good LLMD's in NJ. NJ is a wasteland of bad docs. I can tell you from years of experience, unless you go with an established doc (of which there are only a few on the east coast) you will get undertreated and continue to relapse.
PLEASE TAKE MY ADVICE. NJ is a bad place for ticks and a bad place for tick doctors."
"The LLMDs in NJ are not very good based on patients' experiences. People start with them then end up going to see other LLMDs out-of-state."
"Over the years, the folks in New Jersey have said that the best Lyme doctors are not there."
"I strongly suggest that you be willing to travel outside of New Jersey to get good treatment."
"There are Lyme doctors in the area you have named, but I don't recommend any of them. To get a good Lyme specialist, you will have to be willing to travel. At least half of all Lyme patients go out of state for their care."
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Band 23 is lyme specific. You have it. Is your doc recommended? Some of the alternative docs are good.
You can also go to Seeking a Dr and post. It takes a while to see them (waiting list), but you can ask to be on their cancellation list. I was able to be seen fast doing that. You could also see the doc you have scheduled and switch to a recommended one (an option).
I had all of your symptoms and more. Lyme messes with the whole endocrine system. All parts of the body are affected. It's never just lyme either. Co infections come with the tick bite. You may have gotten it from your boyfriend or even bit yourself. Most never knew they were even bit. Nymphs are the size of the period on the end of this sentence.
You should read: Cure Unknown (Weintraub). It's really good. Also Stephen Buhner's books on lyme and co infections are all great. You can start now on herbs. Healing Lyme and Co infections. If I had it to do over again I would have gone the herbs and homeopathic route (half of lyme patients can't tolerate abx damage).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
ED50, I forgot to say don't freak out with the lyme. Every case is different, every person is different in how they respond. You may not have all the co infections your boyfriend does, or your body may be able to fight better. We are all different.
The good news is you're educating yourself. There is so much to learn and lyme and company definitely takes an open mind to absorb, charter through and also try new things. Some things sound crazy but they're not and actually help.
About half of patients do fine on abx and the other half have to find other means to deal with lyme (can't tolerate, genetic issues, etc). There are various alternative things to try, but no one knows until they try them.
One of the best things that you and your boyfriend can do though is to go gluten free. Gluten causes inflammation as does lyme and it is too much for the body to handle. Most lyme patients go gluten free, dairy free and sugar free (best). All three cause inflammation which makes it harder for the body to fight and heal.
Hang in there you can do this! :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Sorry to take so long responding to this, it's been a crazy few weeks for me.
So I finally got my blood results back from my LLMD and it came back cdc positive on the western blot. So I do officially have Lyme. Which I'm happy to find out only because knowing is much better than wondering and waiting.
My cardiologist told me I have arrhythmia and a potential bundle branch block. She actually said to start the antibiotics because it may help resolve the issues.
I did start doxy a week and a half ago and that was just to start something before I see my LLMD. My difficulty catching my breath and chest pain went away about a week into the doxy.
So I suppose that's a good sign. Although a few days after feeling great I started feeling bad again. Not sure what that means.
Lyme Husband and Dad; Thanks for the link. I have checked out Dr. Burrascano's protocols many times. If I wasn't able to see the dr soon that was going to be my next option. Along with Buhner's protocol.
HopingAndPraying; Thanks for all the info. I have an appointment to see a LLMD this Friday. Yes she is in NJ but she came highly recommended. We know three people personally who said she saved their lives.
And she is also currently treating my boyfriend. Hopefully she will be able to tell me if I have any co-infections so we can treat those as well.
Lymetoo; You were right!
Cat girl; Yes, thank goodness my dr came highly recommended. And I'm thinking you're right, this may be more than Lyme.
I do have Buhner's books and all the herbs he recommends for Lyme, Bartonella, and babesia. I got all that in September when my bf was diagnosed. So I feel extra prepared!
And thanks for the reassurance. For a while I was obsessed, (ok maybe still am a little, lol) but so worried and sad and upset. Then I realized, that's not gonna help me get better.
I will try whatever the LLMD gives me and keep my mind and my options open. I consider myself lucky actually because my symptoms aren't debilitating.
I also feel lucky that my bf had it first, so I was aware of it and knew the signs and symptoms from all my research and the Drs that we saw for him.
AND... I feel like I'm really helping myself with my diet and agree that gluten, sugar, and dairy free is the way to go. I've actually been eating that way for a long time now and I feel like I would be much worse if I wasn't.
I know that's the hardest part for some people. My boyfriend included!
Thank you everyone for all your help. It's crazy and scary and wonderful to know that so many people out there have Lyme, but so many people want to help one another to get better.
I'll keep you posted.
Posts: 3 | From Little Falls, NJ | Registered: Feb 2017
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