posted
I have been watching this board for a while now actually this board helped me finally get diagnosed with Lyme this April.
I am now at my wits end with pain and discomfort and decided to post my story here for some advice.
I started having symptoms sometime around spring summer of 2005. Saw serveral doctors specialists from June to October before someone suggested I had Thoracic Outlet syndrome that was cutting off the flow of the artery on my right side.
I had surgery to remove two ribs on my right side to correct this issue. Almost immediately I realized this was not solving all my symptoms at all.
At this time everyone thought I just needed to give it time I would get better.
By December I had hit a wall and went to doctor after doctor basically being told there is nothing wrong with me at all.
Finally stumbled onto this board and thought wow these are all my symptoms written down in one place. Found a LLMD in my state and got tested.
Tested Positive using Igenex. Started treatment no change. Went off treatment tested for co-infections - no co-infections found. More treatment- more treatment - more treatment (specifics later)no change if anything worse.
For 10 years I have had problems with my back and left shoulder. Never a real big deal, but now the pain is unbelivable. Tried PT, a couple Chiroprators, even prolotherapy and no help. The pain is just excruciating I almost want to cry sometimes.
Right now I don't know what to do. I had been coping through all of this but now the symptoms and pains have just gone to unbelivable levels and I cannot take it at all anymore.
My main problem area is from my neck through my chest up to my stomach. I basically feel like this part of my body is in a vice. I feel like I cannot breathe. I have a hard time swallowing. My heart feels like it has no room to beat.
I feel like my chest is being crushed only on my left side. I can hardly even lay down and relax ever because I just feel like I might pass out and die.
I also have severe burning skin sometimes now and recently just get completly dizzy and have to sit down. Also tingling numbness and sharp pains in body. Poor vision and extreme tiredness ,etc.
I have still been working and such (I am very stubborn - plus I can't afford to lose job with a family that needs my income). I just don't know what to do.
All doctors seem to not believe me or take my pain seriously. Many tests and such have been done, but no answer has been found and all tests show normal function.
Here are my treatment details
May - June - Biaxin, Tindamax, Ceftin July - August - Art, Cat's Claw (no Abx for co-infection testing) August - October - Ketek only October to present - Doxy, Flagyl
Everyday things seem to get worse. Is this all just a Herx from the Doxy / Flagyl? Should I expect to get better soon?
My symptoms were never this bad before. I just fear that one day my chest will just collapse and push all my organs right through my mouth. Sorry for the awful picture, but it feels that way everyday. I feel suffocated.
I used to by a big type A personality everyone would call me to find out what the weekend plans were and what was going on. I was the leader of the group and very outgoing. I was a great husband and father that everyone loved.
Now I am just a shell of my former self. Friends hardly even call anymore because they know I won't be going out or anything because I just don't feel good. My wife and family also deserve to have my old self back. And I myself wish I could be who I once was.
I put on a good show whenever I can and hide my true pain but it is getting very hard with the intensity of these symptoms.
If anyone has advice please let me know. I see my LLMD on Wed.
Brewer
Posts: 11 | From Waukesha, WI | Registered: Jan 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Did things get worse after starting the knew abx regiment?
Flagyl was probaly the abx I herxed worst off of.
If everything is really unbearable I would call your llmd.
If he believes it is due to a herx maybe he can alter your doses or let you pulse in some manner.
Welcome to the board
Best wishes and hang in there things will get better
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Brewer, Sorry to hear about your symptoms, they sound awful. I hope you have a good llmd that you have confidence in.
I have a key question for you. The symptoms you describe:
"My main problem area is from my neck through my chest up to my stomach. I basically feel like this part of my body is in a vice. I feel like I cannot breathe. I have a hard time swallowing. My heart feels like it has no room to beat.
I feel like my chest is being crushed only on my left side. I can hardly even lay down and relax ever because I just feel like I might pass out and die."
Sounds familiar to me because I have asthma. I do not know if my asthma is lyme-induced, but if you do a search here on lymenet, you will see alot of discussion of lyme's impact on lungs.
Are you sure this problem could not have a respiratory cause? The feeling of crushing chest and feeling like one cannot breath is classic asthma, caused by bronchial inflammation and constriction. Have you seen a pulmonologist? I definitely would recommend it if you have not already checked this out -- like most on this net, I am not a doctor, but this sounds so familiar.
I hope you get some relief from your symptoms, take care and keep us posted.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Sorry to hear you going through the pain. I was a very outgoing person, then quit my outdoor activities, could hardly climb the stairs and also had the severe breathing (feeling crushed). I thought I had developed asthma.
One and a half years of doxy and zith combination took a lot of the pain away. the doxy took away the fog. I took 300mg doxy and 100mg zith each day.
I had bad days when the herxing would start because I would just feel like vomiting all of the time... severe flu. I could not feel my arms for months and would toss them over the side of the bed.
From all that I've seen posted here, sounds like babesia.
You can get through this. It is not easy and you will feel like you're back at the beginning every time you herx.
I think it sounds like co-infection. Why are you switching around the abx so much? Allergic reaction or impatient to feel better (as we all are).
I am much better today, but no where near where I was 10 yrs. ago. It sucks. Tics suck.
Keep in touch
Lymester
-------------------- Lymester Posts: 519 | From CT | Registered: Jun 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Brewer. So sorry you are in so much pain; know what that's like - putting on the game face for the benefit of all despite feeling like roadkill.
Hmm, looking at your meds:
May - June - Biaxin, Tindamax, Ceftin July - August - Art, Cat's Claw (no Abx for co-infection testing) August - October - Ketek only October to present - Doxy, Flagyl
May and June look good. Not sure why you'd spend 2 months off antibiotics to test for co-infections, that's a new one on me.
Your present regimen of Doxy/Flagyl is a butt-kicking combo for sure and it's no wonder you feel really bad!
Hopefully, more time will bring some better days. The Flagyl is notorious for bringing the worst herxes. But most will agree it was worth it.
If things don't improve, I would ask about treating for babesia even without a positive test. Sometimes just your reaction to the medications can be diagnostic.
Hang in there.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
thoughts and prayers headed your way brewer for your pain.
i've had 24/7 pain for 30 years but the last 2.5 yrs. of lyme treatment have been the worst.
i use a moistened heating pad and frozen ice packs when I'm up and sitting.
posted
you are awesome that you have been able to keep working for your family. yeah, so many doctors don't believe in anything except tests. but tests only test for what the test tests for. it's like that joke about "i dropped something there, but looking for it here because the light is better here" (i forgot exactly how it goes...) doctors don't understand that. any software industry person would understand though... doctors should get cross-training in the meaning of testing from an engineering standpoint.
Posts: 98 | From San Francisco | Registered: Oct 2006
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posted
Thanks for the replies. I have considered asthma but have had some tests that don't seem to indicate that is what I have.
Babesia I have thought about based on descriptions I have read here, but I would have expected this to show up when tested and it did not.
I have changed ABX so many times because my LLMD and I want to find a combination which yiedls some positive results and so far nothing really has.
I believe the problems are part Lyme and part because of the issues with my back and shoulder.
I just wish someone would be able to find out why I feel like I do. Really dig into my back / should er problems and Lyme issues and figure out what to do get through this.
I wish I know what is Lyme and what something else.
I just want to start to get better somehow. I hope this is all just Herxing, but I always thought that herxing you get worse but then get better. I have gotten worse but not gotten any better yet so I am just not sure.
Thanks again for your support
Brewer
Posts: 11 | From Waukesha, WI | Registered: Jan 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Just so you know the coinfections tests are reliable either.
Even in the better labs you can test negative and still have it.
Also sometimes it takes an abx or abx combo a little while to work especially if it causes a herx.
I have had herxes last months (actually the worst was flagyl at 3 months)...
but when it cleared I had improvement in my symptoms.
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Brewer~ I am so sorry for what you are going through. I can relate.
One thing that I did that was very helpful to me is keep a calendar of my symptoms and my fatigue level.
It was a simple calendar, but it has helped me to see improvements.
For example a 1 means I'm flat on my back. A 2 means I can function but do the bare minimum...nothing extra at all. A 3 means I can function and do something extra (like make cookies for my family) but I still feel very ill. A 4 means that I can make cookies and it's no big deal. A 5 is a 4 plus my symptoms are minimal. A 6 means all my symptoms are gone. A 7 means I'm back to my former athletic self.
I also mark down any major symptoms of the day (nerve pain, muscle pain, heart palpitations, etc)
It took 4 1/2 MONTHS of IV antibiotics (along with oral antibiotics) to feel like I was in the land of the living again, and having some 4 days. I had taken 2 months of oral antibiotics prior to that.
SO...it took a LONG time for me to see improvement.
I did not have positive lab tests for lyme, but they were highly suspicious. Dr. F at Columbia told me it is always important to continually evaluate if lyme is the cause of my issues.
So...I did that...that is part of the reason that I kept a calendar.
The other thing the calendar did was showed me that my herxes, which lasted anywhere from 1-5 days, always start on day 10, 11 or 12 after I start an antibiotic.
I know I have lyme. I am slowly getting better. But, it's been a long road.
Have you had a definite herx, or just overall feel bad? (It seems like you overall feel bad).
It sounds like you have been tested for many other things which is important to do. And you do have a positive lyme test, which points you in that direction.
I would have a cardiologist check out your heart, to make sure that isn't an issue.
Good luck with your LLMD appt on Wednesday.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Gosh, sorry Brewer. I know about that dang back pain thing. And now I have chronic rib pain problems - called costochondritis - inflammation of the rib cartilage.
Chronic inflammation from Lyme is a big problem for me, and it seems that my back, ribs, and knees are the preferred spots. And chronic inflammation is just that - it doesn't go away on its own without some kind of intervention.
Is your problem helped at all by anti-inflammatories - not the over-the-counter stuff - prescription Feldene or Bextra or something like that?
If so, you might talk to your LLMD about a couple months of anti-inflamms to see if you can get the problem under control.
Hope this helps - sorry for your misery.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I had chest pain in the ribcage are that got intense at times.
I switched LLMDs to one who treates Co-infects clinically & it made a BIG difference.
Shortly after Babs treatment with Mepron, my chest pain went away.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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