posted
Hello everyone... It has been a long time since I've vistited Lymenet, (about four years to be exact.) After 2 yrs on ABX and a year on Samento, I thought I had this pretty well licked.
The past few years I've had monthly flare-ups, with the normal fatigue, headaches, knee pain, etc. Some months are worse than others, but I can manage without any meds.
Last year my father in law was diagnosed with stomach cancer it was a real stressful time in our lives. The week of his funeral my Lyme acted up big time, along with a new frightening symptom - chest pain.
At first I was scared it was my heart, but noticed it was worse with movement, and the bones in my back and chest were cracking and crunching and sore to the touch. The pain went away along with the other lyme symptoms after a week or so of resting up. Since then I've noticed the same chest pain symptoms sometimes come back with my normal monthly flare-ups, but not every month. I sometimes have pain in my neck and back now also.
It's been a stressful year for us, we moved to a new state, my husband owns a trucking company and the fuel prices have put a real strain on our finances, our oldest daughter went off to college, I started a new job, and then there's always some other drama going on with our other two teenagers. I've noticed my Lyme symptoms getting progressively worse this year.
Last week I decided to start back on Samento, and within a couple of days my upper back and chest are hurting so bad I can hardly move. Has anyone else ever experienced this kind of pain with Lyme? or with Samento use? Do you think this could be some sort of herx from the Samento?
I'm pretty much living on Advil right now. I hate to discontinue the Samento if it's doing it's job (you know, no pain - no gain). I do remember having upper back pain for the first few weeks after starting on Biaxin but this pain now is so much worse and down right scary.
My husband is worried it's my heart as it seems to be located mostly on my left side, but it moves around from side to side and sometimes in my shoulders and neck or lower back. I wake up feeling better in the morning but it gets progressively worse as the day goes on. My bones are so loud with popping cracking sounds in my back and chest, it has to be inflammation, even my ribs are sore to the touch, and my breast bone is extremely sore. Sometimes it is an aching pain, sometimes a stabbing pain. If it was my heart, I don't think the pain would come and go and move around so much.
We moved to Southeast Georgia last year and I haven't been able to locate a good Lyme doctor here. I contacted the Georgia Lyme Disease Association but never heard back from anyone. I will post under the need a doctor forum, but if anyone else knows of someone around here can they e-mail me at [email protected] I would appreciate it.
I have a new job, working in the A/C every day and sitting at a computer for long hours, I suppose this isn't helping the situation any.
Sorry for the long post and for being absent from the forum for so long, I'd probably still be trying to get diagnosed if it wasn't for this site... I am so grateful to all of you and trust your judgement immensely. I'd really like to hear from anyone who has experienced similar pain from Lyme or from Samento use. And if anyone knows of a LLMD in SE Georgia. Thanks!
-------------------- crmc Posts: 165 | From GA | Registered: Jul 2003
| IP: Logged |
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Welcome back!
I can't help with a Georgia doctor, but maybe I can help a bit with the symptoms....
First, crepitus is a likely reason for the popping noise you are hearing and is common in arthritis. It seems to be especially loud in Lyme arthritis.
Second, it sounds like you also have Costo-chondritis, an inflammation where the muscles join to bones of the sternum and ribs. This hurts like a $%#@! Do not exercise the area, use a heating pad, and take anti-inflammatories, if your tummy can handle them. The good news, is it should ease up. The bad news is if you are large busted, it may be a permanent problem, that will just flare and remit.
If you've never had a cardiac work-up, that would be a good idea, just in case. Many Lymies have a Mitral valve Prolapse, and it would be worth it to find out if you have one (It causes left-sided chest pain when you lie down, and palpitations, among other things), and to give you peace of mind about the other symptoms.
I am amazed you took Samento for a year without having painful herxes from it. It brought me to my knees, until I cut back to a much smaller dose, below herx level. I've been taking it for four years.
So yes, if you have any borrelia or any of the many other organisms that Samento can kill in your upper back area, it could be causing the pain. I would reduce the dosage and see if it improves.
Also, did you start back up on a full dose? Samento should always be started with just one drop daily, IMO, esp. if it's been a long time since you took it. You might look into trying the entire Cowden Protocol...a lot of advancement has been made since the days when he used just the Samento.
It sounds like your remission has not been a complete one, and Lyme may have been continuing to do some damage, while you were not taking anything. This is not at all uncommon, so please don't beat yourself up over it.
I think others will tell you to go back on ABX for awhile. Being allergic to all of the ABX that work on borrelia, I've never had any ABX, so I will leave the specifics of that advice for those who know what they are talking about.....
You have had a lot of stressors all in a short time, so it is not surprising that you would have a flare up. I hope you feel better soon. If it makes you feel any better, I am green with envy that you can hold down a job, and I hope that continues for you...it must be wonderful!
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
| IP: Logged |
posted
Thanks for answering my post... I googled costochondritis, I've never even heard of this before. But you're right it sure is painful! I guess the lyme has invaded my chest wall now, geez, what's next? I guess I'm always looking for heart problems since I had babesia, but now that I see the symptom list for this, I'm pretty sure that's what it is.
I think the load has been building back up all these years only to come out and "play" when the stress of the last year lowered my immune system. I sure hope I can find an LLMD around here. I'd gladly go back on ABX. for awhile. I don't know how you are managing without them, I feel like they saved my life. (even though I thought they were killing me at first, ha!) I only took oral meds, and have had some people tell me that I'll never kick it without doing the IV. But Samento has been a lifesaver too.
Yep, Samento is good stuff! When I took it last time around, my doc wanted me to get up to 45 drops per day. I could only make it up to 30... couldn't tolerate it past that point, so I stayed on that dose for a year.
Last week I started out slow with it, but when I got up to 15 drops per day is when all this chest pain came back. I've just kept it at this level for 2 days now. Trying to detox and give my body a chance to adjust before increasing the dose again. I noticed that first day that my chest was hurting, that my kidneys were killing me as well. I loaded up on the water and detox and I've had no more problems with that. I take that to mean that I had a bunch of die off. Sure hope so!! Anyway, thanks again for the info.. will try to put a heat pad on it tonight.
-------------------- crmc Posts: 165 | From GA | Registered: Jul 2003
| IP: Logged |
Thought it was my heart... but then on a few rare occassions I would feel the same on the right side ?
Then some type of plural effusion... had to be because it felt like inflammation and aspirin did help a bit...
Then costochondritis... but could touch rib bones without wincing so ?
Then some sort of radiating nerve from my esophagus/stomach when it seemed to worsen when I would eat. And when it suddenly "felt" minty one night lying in bed ?
(I thought I was losing my mind and my Gastro told me not to tell another doctor that! )
Later realized I had taken Mylanta those "minty" nights.
It was horrible and kept changing. I could not for the life of me place it or figure it out - neither could the docs with all their tests. I was certainly irradiated way too much in attempting to find out.
It WAS always better in the AM then progressively worsened as day went on.
I slowly discovered that wearing a bra made it worse. Haven't been able to wear one since May.
Sitting in the car made it worse. Sometimes eating would make it worse.
Swimming seemed to help a bit and always better in the morning.
It was/is very scary pain, indeed !
Still haven't figured it out but I CAN tell you that it has now moved into my thoracic spine - right inside my bone.
The WORST pain I have had to deal with in my life - never-ending - no more break in the AM. It feels like something is eating away at my bone marrow from within. Sadly, I am taking lots of meds that I don't want to and nothing seems to help.
This is all new stuff for me... I was bitten (lots) in 1994 and never treated so who knows what I have.
Currently 22 days into IV Rocephin and no relief.
I just wanted to let you know that from the sounds of it - you are where I was this past Spring and that it is very strange and frightening pain.
And I want to urge you to do whatever it takes NOW before it might get into your spine like me. It took about 3 months for it to settle in there. Now, I am wishing for that old scary chest pain.
Best luck !
Sam
Posts: 68 | From Pittsburgh | Registered: Aug 2008
| IP: Logged |
posted
Sam -- Oh, I sure hope this doesn't settle in my upper back, that would be no fun!! Like I said before, I blame some of this on sitting at the computer all day, could just be back strain combined with the Samento herx. The chest symptoms are more worrisome at the moment, but you are right, I do need to get all of this resolved before it gets any worse.
Take heart, I didn't start feeling the slightest bit better until I was at least 3 months into treatment, but then I only took orals, so it may have took me longer. Good luck to you!!
-------------------- crmc Posts: 165 | From GA | Registered: Jul 2003
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
) 
Printer-friendly view of this topic