nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
I saw on a comment post something about Lyme attacking different organs etc,
I get that all to well..The post was on Dr. Phil's comment's..
.Which I'm having a heck of a time navigating,..but she mentioned the muscle and breathing issues.
I've mentioned this a hundred times...My breathing ,mostly at night , is OK or bad depending on which ABX and how /which>? infection is reacting at the time.
Even my back hurts in a certain area ,when this happens,,/
ANYBODY ELSE GOING THROUGH THIS AND ,WHAT TO DO/WHICH INFECTION Nonna
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
I have no idea which infection causes it. I know it flares on babs meds. But also on lyme meds. Could be related to trigger points, or lyme in the phrenic nerve, muscle weakness in the coastal chondrial joints,vagal nerve issue. Who knows. When I started a double dose of septra with double mepron my diaghram felt swelled for a couple of weeks and my breathing seemed better, until I pulse tini and it comes back.
Posts: 433 | From new york | Registered: Dec 2004
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Yes. It can cause acid reflux and heart palpitations, as well. I have a chiro that applies pressure to the trigger points (hurts like hell), to help them release. This tightness and burning was one of my first symptms, but I just recently found out it was my diaphragm.
Posts: 418 | From NJ | Registered: Sep 2007
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Tracy9
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Member # 7521
posted
Do you have any issues with swallowing or choking? Any other muscle weakness, like hands, legs, arms? Do your eyelids droop at all?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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nonna05
Frequent Contributor (1K+ posts)
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posted
weakness in general....It.has been hard to hold big book's or computer. So I have to lay on bed and lay in a weird position...
The breathing has been a come and go thing from start.... but lately worse... I thought being on so many meds it would at least halt illness progress and then heal.
Sometimes my throat is sticky... No eye lids droop, but reading ,black/white is blurry again.. but watching color and tv not big problem.
Muscle weak with laying in bed and fatigue ...this breathing is a whole other issue.
..except that I haven't been down in,bed this often, this long before...several month's now...
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
You need to get tested for Myasthenia Gravis ASAP. You need to see a neuromuscular specialist or contact the Muscular Dystrophy Association for a referral to your local MDA clinic for an evaluation. You have many symptoms of this disease. It's an autoimmune disease. I have it, and before I was diagnosed I was at the ER many, many times with shortness of breath. I simply could not catch my breath. I was worked up over and over again for pulmonary emobolism, heart attack, you name it....exposed to a ton of radiation from numerous CT scans of the chest, etc.
All the while I had Myasthenia Gravis for about 2 years undiagnosed. As soon as I started Mestinon I could breathe again. Please, please do this. If your blood test is negative, make sure you get a single fiber EMG test to be sure. The blood test is not always accurate. I don't have droopy eyelids either, I have generalized MG.
My blood test was positive on the first try but they have run 50/50 since, so it could have just as easily have been negative and I would have never been diagnosed. I could be dead by now.
With MG, the diaphragm muscles get so weak it is hard to breathe. This is a life threatening condition. Your muscles can give out and you can stop breathing.
Try taking in as deep a breath as possible, then count at a normal, not fast, pace as you exhale and see how high you can count. A normal person can count to at least 20. Before Mestinon and IVIG, I could only count to about 8 or 10. That is ER point. IF you have trouble breathing, or can't count to 15, you are supposed to go to the ER.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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posted
Do you ever choke on food or water? Are your hands weak, like do you have trouble squeezing toothpaste or shampoo bottles, opening water bottles? Do you get double or blurred vision? Do you ever drink out of a glass and have the water dribble out of the sides of your mouth? (This happens to me because my lips are too weak to make a seal on the glass.)
Do you ever have trouble walking steadily? This happens to me because my legs are too weak and my hip muscles are too weak to keep me going in a straight line.
Do you feel it's hard to hold your head up? I always have to lay down or lean against something because my head is too heavy for my neck to support.
Some days, my hands are too weak to hold onto anything. My arms are usually too weak to even lift a bottle of milk or open the microwave door, or lift a dinner plate.
After eating I will often cough for a few minutes because of the swallowing and choking issues, I have aspirated so much food.
I choke a lot on water. I have to chew and swallow very carefully and can only eat fairly soft foods now, and very small bites or I'll choke.
Also, with MG you fatigue easily. You can start off okay but then your muscles poop out quickly. With my breathing, if I talk a lot or get on the phone, I have to go silent or I'll have trouble breathing for hours after or the rest of the day.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
some familiar issues, I see internist Friday
I hope to remember to put this on list
Just one more thing to think about..
.I just want to touch the hem of HIS robe and be healed ,,
then I want to be with my grandaughter's and help people, ,Didn't seem like to much to ask...
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Tracy ,I didn't do to great with your test..hope it was just not understanding letting air out.
Seemed pretty simple I'll try again...noticed dizzy and weak ,so I'll rest and try.
Do sitting up, laying down standing??
Lord I never thought I'd be asking about this.
Can we just have more trouble cause in bed so much?/
I want to go walk or something...wish I could, Then I'd worry about any flying/bitting bugs Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
It doesn't matter what position you are in when you are doing it. It's testing your lung capacity. Being in bed too much does not cause this breathing difficulty. I always thought it was just lyme symptoms until my LLD, who happened to be a neurologist, picked up on it. I was constantly choking on my liquids and food sometimes too, but generally on water. Other people were always about to do the Heimlich manuever on me. Because it came on gradually I didn't even realized it was a problem until others on this board suggested I needed to bring it up to my neuro, that choking can be a neurological issue.
Thank God I did. I am now being treated for it an finally better. I had no idea my breathing issues were part of another disease altogether. I could have died at any time because my breathing muscles could have gotten too tired to work and just stopped. It's a very serious and life threatening disease if left untreated!
I've already been hospitalized once in a "myasthenic crisis" and I don't want it to happen again. Fighting to breathe, being so weak you can't hold your head up and can't feed yourself or walk is scary and extremely depressing. It took over 2 months to recover from that and they tried to put me in a nursing home.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Hi Tracy, I saw your post about difficulty breathing. So many of your symptoms are identical to mine: difficulty breathing, drooling, choking, weak muscles in arms and legs, can't hold up head etc. I've been tested for MG but they didn't think I had it.
I've had one doc say ALS and two say maybe not. In the meantime, I'm getting worse even with lyme/parasite treatments. I now have a cpap at night and my muscle atrophy is increasing. What neuro diagnosed you with MG? Who do you currently see?
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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Nonna
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