seekhelp
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posted
Today, I am wearing a 24 hr holter monitor and am trying to do light aerobic exercise. I tried walking one block and started to get lightheaded, air hunger, swallowing problems, chills, heavy legs, and my muscles just locked in my neck and calves.
I rested and did a bit better. I barely could make it home that one block.
Test #2: tried driving 1.5 miles round trip. I went to to a small store. I tried walking for 5 min. All of a sudden, I got severe pressure in my upper left shoulder blade and my breathing got 10x harder. The swallowing problem started.
I try driving home and am getting just super tight neck tension. I feel like I'm getting strangled. Very weak, very hard to breathe.
I give up. I can't deal with this. Everytime I try to do any walking, exercise, driving, I get that severe tightness in my upper left shoulder blade and them it feels like my breathing abilities diminish horribly.
What a crap way to be. I may as well be in prison because that's how I feel. I can't believe I was ever a normal person once who walked places, drove, had friends, etc.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I was just thinking the same thing, re: what my life used to be like and when (if ever) I will get it back. I would love to be able to make plans again. So I understand.
I have no advice re: the medical stuff, but just am offering some support. Hang in there!
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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2roads
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Oh Seek......how frustrating.
You are looking into heart function while wearing this monitor...yes?
Do you have any numbness or tingling in your fingers, especially rt hand?
Please reiterate what TBD's you have and what treatment you received for them. I would hope Babs was one you treated.
Doesn't sound like Bart, but Lyme and Babs. Plus, possible heart condition maybe related or not.
Keep the faith Seek. There's gotta be an answer...and with an answer, good medical help, money, diligence and prayers come solutions.
Hugs,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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2roads
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Ps- Especially left hand...not right Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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seekhelp
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posted
Yes, a doc ordered it looking for heart stuff. I've had 3 echos, 1 transesopageal echo, 2 cardiac stress tests, carotid artery ultrasound, 25+ EKGs..all normal. A different 24 hr holter was normal.
No tingling when this happens. Just lock-up of the shoulder blade on left side and strangulation of neck muscles. The more I walk, the worse it gets. Stationary bikes tighten up my legs and calves horribly, but not the other muscles. Walking obliterates me now.
All exercise immediately locks up my upper chest muscles and it feels like one side of my breathing muscles stops working at full capacity. Pulmonary tests are normal. Blood gases normal.
My two LLMDs treated mildly for Babs (10-day treatments of low dose anti-malaraials and clindamycin/quinine protocol). They don't seem to think it's urgent though.
I had low borderline abnormal Babesia Microti and Duncani IgG tiers. Docs don't think anything of it. How many would bet their lives the symptoms I describe are Babesia?
The hotter or colder the weather, the more severe the symptoms get. I felt like I was going to die last winter trying to walk two houses on a freezing day. My BP shot up to 190/110..heart just pounding. It usually doesn't happen in normal weather, but the other symptoms do.
I've treated Lyme for 13-14 months now. It's been a useless endeavor IMO. I'm fed up. There just is no figuring it out.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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It doesn't sound like Babs to me. The air hunger is a sx, but it sounds like your breathing muscles are not working right. Like you're having muscle spasms.
My friend who has Lyme bad used to have breathing problems too. She would suddenly have shortness of breath, like she couldn't breathe. NATURALLY her psychiatrist said she was having panic attacks. But she would have them randomly without any emotional trigger. I thought they were muscle spasms or seizures as she had them with other muscles, why not her breathing muscles?
Then, she had a port put in for IV abx. Daily for a month or so, and then randomly after, she had severe chest pain an breathing problems. She said it was like a 300 pound man standing on her chest.
Over time, the sx got better.
I hope it gets better for you too. You have to stay with the TX. The infections are not going to get better if you stop them.
James
Posts: 872 | From New York City | Registered: Jun 2008
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bettyg
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praying for you seekhelp ... so sorry for all you are going thru
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Seekhelp, be sure your LLMDs are in the loop with the cardiologist.
It's very important that the cardiologist treat you with lyme in mind, and not as a regular cardio patient.
Go back and read your post again. It seems to me that what you are saying is that during these attacks your muscles are acting up widespread.
Muscles in neck, calves, swallowing, breathing, heart (which is muscle) try to think if any other muscle areas are acting up during this.
Good to check the heart, but try and get the docs to look at this as a body wide event.
Also, are you seeing a "gentle" chiropractor? They could help. Mine is an activator chiropractor, very gentle methods.
Keeping you in prayer, and don't give up the fight!
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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Sammi
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seekhelp, I am sorry things are so tough.
I agree with you that these sound like Babesiosis symptoms. Can you see a different doctor about treating Babesiosis or bring it up with your doctor again?
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seekhelp
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posted
James, it's very interesting to me to hear from someone I know fights Babesia adamently that my symptoms don't sound like it. What you are describing is exactly what I deal with (same as your friend).
I think at the end, it's muscle lock-up and my muscles can't function properly. Everytime these things happen, I just have to go inside and I start dry heaving due to the pressure in my upper left shoulder blade. So odd.
I forgot to mention I have been through an absolutely exhaustive neuromuscular work-up including a muscle biopsy. All was normal.
Thanks BettyG for the nice thoughts.
Melodymaker, I see a chiro currently. It helps a small bit, but nothing has alleviated the exercise issue a bit. My chiro is traditional and good, but they just look at me like an idiot when I come in weekly and tell them my muscles are as hard as rock. They nod their heads to Lyme, but I think the practicioners there are CLUELESS about chronic health problems and have not personally dealt with any. You can tell.
THe problem is my LLMDs could are care less to work with any other docs. It's a dream. Where ever you all find these LLMDs who do this, you're blessed. My docs live in their own bubble in that respect and only review test results if given to them by me.
Likewise, my regular docs despise LLMDs and consider them snake oil salesman. They wouldn't care what a LLMD had to say. Not one in 40+ doctors I've visited had a good thing to say about LLMDs or believe my Lyme Dx. Fun, huh? They all confidently tell me Igenex is a fraud lab too and not to believe them. SO SO SO frustrating as a patient who just wants to get better.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
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Seek, I don't have the shoulder problem, but I do have the neck tightness you describe, which leads to swallowing problems and for me feeling like I am choking to death. I feel like all the muscles and everything else around the neck area are constricted.
I have noticed that when I first open my eyes in the morning the symptom is not there. It starts as soon as I get up and start moving around.
I believe it is a lyme symptom and so does my LLMD, even though I still haven't gotten a real explanation for it.
Muscles seem to be the prime suspect for me, or the carotid arteries. Something in that area is constricted, and it comes and goes all day long. Never leaving, just lets up a little here and there. And yes, if I go to a store, sure enough my throat closes up.
I do have to think that some portion is anxiety. Like once the muscle start to constrict, anxiety adds a little more to the mix, just to make it worse. I take Xanax, but it only helps at 1mg and then only a little.
Please let us know what you find out. I am still trying to decide if I want to go and get all those test done or just accept it as another miserable lyme symptom.
Something I am trying now is bouncing very lightly on my rebounder, 2 minutes at a time. This is all my body can handle right now. My feet do not leave the rebounder, just light bouncing. I cannot walk much either! So this is my only real exercise, which I think is needed. Also, cutting back on all inflammatory type foods and adding an extra magnesium a day.
This is a very very frustrating symptom and hopefully as treatment goes on, it will pass.
Please let us know how your testing goes. Hope you feel better soon!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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2roads
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Seek,
I read here alot that muscle issues are babs, more so so then lyme.
But, none of us has a crystal ball.
I know you mentioned this, but I just want to make sure before we think on.
You said pulmonary studies. You ruled out nasty stuff like Pneumonia, lung nodule, any kind of asthma related attack or emphysema (if you smoke)?
It 's probably far-fetched but just good to mention.
If so, I would say you need to get started on a good therapy for Babs like Mep with Zith and Artemisinin, perhaps some Malarone later on depending. Kepp up lyme with cyst buster.
You're not really at the South Pole...are you?
Hopefully not, and you are state-accessable to a better doc.
My family drives, drives, drives to get the help we need.
Hugs,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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GiGi
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posted
Seek, consider googling "Klinghardt Babesiosis Carditis Heart" and (2) look into the condition of your wisdom teeth (still in your mouth or out).
I am very familiar with all this and could go into details here. But it is easier if you pick the links and go from there getting some of his input directly. He has learned to be very very careful with Babesia and its problems. If it were me, I would not push for walks and exercise, no matter how far, until you have a better understanding of the problem.
For your information, the wisdom teeth are closely related to the heart meridian. And sometimes it's necessary to fix something else first before the next can be successfully addressed.
Hope you make some headway soon - you really deserve it!
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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seekhelp
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2Roads, yes, I've ruled all that out. Chest MRI was normal 15 months ago, X-rays always normal, told no asthma.
No, I'm not in the South Pole. In the U.S.
GiGi, thanks for the info. I tried Googling it, but I can't find the exact point you're trying to make. Any further explanation would be greatly appreciated.
I have read Dr. K's Lyme treatment guidelines several times. FYI, I had all four wisdom teeth removed 4-5 years ago. I have 2-3 amalgam fillings and 2 root canals.
Why do I get the feeling Dr. K is really the only doc who could save my life and get me back to a functioning level?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymeladyinNY
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I think you need some aggressive babs treatment. I didn't have your symptoms exactly, but I had some very atypical babs symptoms.
When I read your post I felt like I was "remembering" how I felt last year when I had full-blown babesiosis.
Mepron didn't do it for me. But, a combination of malarone/zithromax and artemisinin has helped me more than I can say.
Once I seriously treated babs I have felt better than I have since I was infected 6 years ago. I didn't realize just how many of my symptoms came down to that one infection.
I hope you feel better soon! - Lymelady
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glm1111
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Seek,
I feel so bad for you that you are suffering. Sometimes resting is in order. I know it's hard, but I used to spend weeks in bed just giving my body a chance to heal. I have had all of the symptoms you decribe.
I couldn't take a deep breath for 2 yrs and couldn't walk a block either. I am close to remission. Please try not to feel so defeated, even tho I know it's hard. Saying a prayer for you,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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djf2005
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gael-
thanks for posting that response.
i know for me its VERY hard to rest, even if i literally feel like i am dying, because my "i can do" attitude gets the best of me even in the worst of situations.
thanks for that thought though, next time i am in bed, or on the couch all day, i wont feel so bad....
-d
ps- could you PM who you see? i see you are phili not far from me... thanks
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
When did you have the root canals done? Be sure you go down to page 4 re dental situation. Do search on Wisdom Teeth and Christopher J. Hussar. Dr. K. does basically not accept patients if mercury still in mouth, even the smallest, especially when patient has problems because it it means he has to hold treatment until mercury is out. You cannot detox metals successfully with mercury still in place.
Old wisdom teeth sites are often a problem, even if teeth were out years ago. Read publications by C. J. Hussar. He did all my work in mouth. I had both - root canals and wisdom teeth site problems. My wisdom teeth had been removed 30 years before. That is where Lyme settled, plus of course everywhere else eventually.
Take care.
[ 10-09-2009, 01:21 AM: Message edited by: GiGi ]
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seekhelp
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Thanks Gael. I know what you mean. It's hard not to beat yourself to pieces and get down. I feel like I've been bashed by this disease and it has me in prison for life.
Gael, the salt/C helped you get rid of those?
LymeladyinNY, I'm ready to take this approach, but I have serious concerns. One being my LLMD writes scripts for one month of a drug. First, I may not get the Malarone covered and have to pay out of pocket big time. Next, my doc doesn't seem to respect Babesia as a major issue requiring 4+ months of hardcore treatment.
I may be wrong to a degree, but when you treat it for a small time period like 20 days or low dose, I feel you're indicating the parasite is easy to destroy and not a big symptom causer. In reality, I'm not sure either, but responses on this forum sure point to it being serious.
Why invest $600+ in meds just to be on them one useless month and relapse? I see my doc once every 6 months only so these issues are hard to work through. Perhaps a phone call may get me more? If I go for the kill, I want it done right. I don't have money to burn anymore. Dr. B is clear as day in his guidelines on what needs to be done.
Lyme patients sometimes get put in a bad place. I'm desperate to rid myself of this illness. I feel like my docs don't always feel the urgency I do, but I guess they can physically walk, work all day, and enjoy life. I guarsntee you with out s shadow of a doubt, if the docs had these symptoms, treatment would be immediate.
I've got some tough decisions is the bottom line.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
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Fascinating GiGi. That's a shame that he treats no one with mercury, but it makes some sense. Out of curiosity, I looked back on my records.
The idea of not herxing during treatment sounds like a dream. It's amazing his patients have a totally smooth ride beating these infections. I wonder if anyone struggles much? I now clearly see where you got a lot of your suggestions.
Did the dental work make the turning point for you?
I could follow some of his treatment, but I'm unable to do the heavy metal treatment and that sounds crucial to success. My current LLMD somewhat treats I guess, but requires a huge amount of labs consistently and the literature I read claims it's thousands of dollars consistently.
It seems like he almost not recommends it by making it sound too expensive to pursue (at that price it is). It's more of a you can do if you want, but not a big deal to success. I guess with a 97% response rate in treatment, maybe it's not an issue?
One root canal was done 2/04. The major wisdom teeth extractions were done 12/05. I'm very curious when my first root canal was done. Something makes me think it made have been 1996...I fell very ill in Dec-96 and haven't been the same since then. Not as bad as now, but it was a turning point along with the mono.
I really started to have a bad health year in early '07 and major escalation in Sep-07. Could there be a connection I didn't see? Lastly GiGi, what kind of money are we talking about to have done what you did?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Sammi
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seekhelp, can you get another opinion regarding the Babesiosis? Or speak to your doctor about treating it longer?
For me, Babesiosis is my worst infection. It can take some time to eradicate it.
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seekhelp
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I can try to talk to my LLMD, but those phone calls ain't cheap I bet. I'm out of second opinions as local docs won't ackowledge it. I was hoping my LLMD would think it's a bigger deal.
My only chance would be a very aggressive LLMD. I must admit, I wish the tiers were even one level above borderline to give me more confidence in the diagnosis. It sure makes sense to try a med to see what happens though (in correct doses).
My old LLMD treated it for 3 months, but it was one Malarone a day. lol. Just a little far from Dr. B's recommendation, huh?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Sammi
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It may be worth a call if you can get proper treatment.
If you need to travel to see a doctor, some doctors will spread out appointments for people who travel to see them. You can get blood work done locally.
I don't think one Malarone daily would help the majority of Babesiosis patients.
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glm1111
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Seek,
Yes, I would say that the salt/c when it's all said and done is really the main reason I am getting better. I also have to respect the aid I received (still do) from the antiparasitic herbs.
BTW...I have had my wisdom teeth out when I was 16. Even tho I have/had the infection in my jaw, that too is leaving with tx.
I along with many others could not afford a lot of expensive treatments and always felt I could get rid of the infections another way.
I believe the salt is drawing the infections out of my jaw just like it would if I was soaking my infected finger in a glass of warm salt water. The herbs help also.
There is more than one way to skin a cat, so please don't get discouraged.
D...You can also do some healing visualizations while you are laying down or resting so that you can feel pro-active.
Not always necessary tho...sometimes just letting it be alright to rest is healing enough,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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thanks for the link Gigi, started reading but need more time. will check it more later.
Blessings everyone!
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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Sounds like exactly what im dealing with. I cannot do anything physical. I cant sit with out that weak neck and back and then shortness of breath if i dont lay down. I feel like someone is sucking the life out of me. Before when i had lyme 8 years sometimes i felt like i couldnt even chew like my tounge was tight.
If i push it only gets worse and to the point im in pain in my muscles for the rest of the day. If i lay down it seems to ease for a while.
Something i just remembered when i first got sick the doc showed me pictures of my blood cells. They were stuck together in bunches. I was told when our muscles need oxygen that the blood cells cannot get threw the capillaries to make oxgen(sorry spelling not good tonight). Lyme from what i understand puts off slime and it makes the cells stick together. So maybe this explains what is going on. We move we need Oxigen(again spelling sorry) If we cant get it we have pain in our muscles.
Terry
Its very frustrating because i know i do not need to lay down so much. I dont have babesia dont know what is going on unless its just a form of herxing with meds.
Hope You Feel better soon Terry
Posts: 112 | From Ohio | Registered: Aug 2006
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canbravelyme
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Seek - I feel your frustration.
I will say to my mind your body is giving you clear signals *not to exercise*.
quote:All exercise immediately locks up my upper chest muscles and it feels like one side of my breathing muscles stops working at full capacity.
That would be a "No".
It wasn't until I *stopped* pushing through, and rested instead, that I began getting better.
In fact, the more I rested the better I became.
You know the old adage for illness: rest and plenty of liquids.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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richedie
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So sorry to hear...wish I could help! Hang in there!!!!! Thinking of you.
Canbravelyme, what about the recommendation that we all exercise if we want to get better?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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canbravelyme
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@richedie: I don't know.
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TerryK
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Seek - sorry you are experiencing so much difficulty right now. I know it can be discouraging but hang in there. You will find something helpful if you keep looking.
Your symptoms sound to me like they could easily be trigger points or myofascial pain syndrome type problems.
A trigger point can refer pain or problems from one area of the body to another. They can compress blood vessels and nerves causing all kinds of problems that one would never think could be caused by trigger points. Your shoulder problems, breathing problems, tight muscles and throat problems are all familiar to me. Also sudden muscle tightening on one side of the body.
There are therapists who are trained in trigger point therapy and can help you if this is your problem. Read about breathing problems on this page.
The doctors who discovered the trigger point issues were doctors to President Kennedy. Apparently he had trigger points.
I used to have muscles that were very hard - felt like my muscles were turning to stone. This is a common complaint in those who present with fibromyalgia type symptoms. Guaifenesin protocol helped that quite a bit but it is a hard to follow protocol and can cause more muscle pain.
When my muscles started to tighten up on one side of my body I could barely walk. I started supplementing with branched chain amino acids and that seems to keep this problem at bay most of the time. I can't say if it will help you or not but I don't know what I would do without them.
I hope you figure it out soon.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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richedie
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How can trigger point therapy help if the underlying issue is an infection?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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btmb03
Unregistered
posted
Seek - your reaction sounds a lot like mine - a classic "out of control" autonomic response. Probably a reflection of our high pathogen load.
No easy solution - the trigger points are very real though secondary to the primary infection. I went to 3 chiro's, acupuncturists, etc. with no relief.
I agree, we cannot "exercise" until our bodies tell us we're ready. Dr. B's guidelines don't necessarily reflect the sickest of patients. Of course gentle movement is crucial but far from exercise as we *once* knew it.
I know "redefining" ourselves is not an easy task esp when we're afraid we might stay like this forever. Pushing outside our "envelope" continually only deepens the energy deficiency syndrome we suffer from which in turn makes us sicker..then we feel worse mentally.
See the cycle? Be gentle to yourself and hang in there!!
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TerryK
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Ritchie - Treating trigger points can help relieve symptoms AND if you have one or more that are impeding blood flow, they can help you heal faster. You need blood flow for nutrients, oxygen and meds to get where they need to go.
A trigger point is a small contraction knot in muscle tissue. They can be felt with the fingers and often feel like a pea buried deep in the muscle. Pressing on one can be VERY painful.
Everyone has trigger points but infections, hypoglycemia, certain occupations and other conditions seem to cause a lot more of them for some of us.
A lack of oxygen and nutrients in the trigger point itself can perpetuate trigger points for months or years if not treated. A nasty property of trigger points is that they can exist indefinitely in a latent state in which they don't actively refer pain but accumulate over a lifetime and could be the cause of stiff joints and restricted range of motion in old age.
You may not suspect that you have latent trigger points but they are very easy to find because they are extremely painful when pressed on. Latent trigger points can be activated by very little stress or strain.
According to The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief, by Clair Davies N.C.T.M.B. and others, trigger points are responsible for a huge array of symptoms such as: joint and muscle pain, lack of circulation from compressed blood vessels, nasal secretions, nausea, toothaches, tooth hypersensitivity, tingling in extremities from nerve compression, sore throat, difficulty swallowing, visual disturbances, headaches, migraine headaches, bladder problems, heel pain, heart arrhythmia, diarrhea, loss of appetite, trouble breathing and the list goes on and on.
I used to have them in my chest and abdomen so bad that it didn't matter where you pressed, you could find one. At one point in my treatment, they were almost gone in my chest. Now I have more again.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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METALLlC BLUE
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Comeon on people, it's only the "aches and pains of daily living."
Well, that's what Gary Wormser says. I find it a bit interesting really. I experienced the same exact things you are going through seek. Once I started treating Babesia, the shortness of breath and night sweats improved. Heavy antibiotic therapy of a variety of types improved my exercise induced exhaustion (Not that I am not already dead before exercise though).
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
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Member # 15067
posted
OK, interesting feedback. TerryK, I certainly can buy into the trigger point theory and toxins. I had a HORRIBLE night yesterday. I woke up at 3:30 AM and it felt like my left upper shoulder blade was locked and I couldn't breathe right.
I was literally gasping to get a breath due to muscle lockdown. If it got worse, I feared needing to go to the ER. I suffered terribly for over an hour using heat pads, automatic massager, ibuprofen, stretching, breathing into paper bags, etc. praying it would subside a bit.
This is ridiculous. I can't take it. Gary Wormser can shove it or feel free to live in my body for a day and try to do his job.
I have tried trigger point therapy and craniosacral therapy and more. All help a bit, but my body is like a super tight rubber band that never changes it's muscle memory.
I honestly don't know what I'm going to do if this doesn't abate. I'm at a tipping point. It comes and goes, but ALWAYS is here when I try to do exercise. My muscles are in an eternal state of tightness. It's terrible.
Magnesium is not helping orally. My LLMD and others don't mention nor suggest IM or IV Mg. Most forms of self-help such as PT are impossible as I can't drive due to this issue. The straighter I need to sit up, the more severe the pressure in the left shoulder blade that cuts off my breathing. My neck gets stiff as a board. I have had multiple x-rays, CT-scans, MRIs...all show nothing major except 3-4 bulging discs from C4-C7.
TerryK, maybe I'll give the branched amino acids a try. You're not the first here who said they made a huge difference. How much and what brand do you take?
Btmb03, everything you said was correct. It's a vicious circle and demoralizing.
I'm at the point where it's full boar treatment or else. I have gotten nowhere good after 14 months of Abx treatment and have had it. This is a waste of time on this course. It's time to take a different path in the road. That much is obvious.
I used to exercise a good amount and certainly knew what it was like to push myself hard when my body was tired. However, this time I know my body is saying no way Jose. There's more going on.
Nothing is frustrating more than the spasticity. Last night, all my abdomen muscles on the sides were stiff too making natural breathing even harder. It's like pushing against a 100 lb weight. Something is very wrong physically and I need a doctor completely focused on getting to the root of it and FAST!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I know exactly how you feel seek. Brother, this is absolutely horse****, we're trapped and no amount of "thinking positive" or delusion is going to change that fact.
What we need is to keep searching for help!
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Seek - have you had a pulmonary function test done? I know, I know...sick of testing which all comes back fine, right?? Hang in there!!
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
seek - I take SNI elite series BCAA 4 hour advanced sustained release.
The day before I was supposed to get on a plane to see my LLMD, the right side of my lower back locked up and I could hardly walk. My husband and I did muscle testing and found BCAA's. I've tried slowly going off a few times but I get the severe tightening of muscles again, typically on my right side, so I continue to take them.
This product does have bioperine in it. I seem to need this brand but in a recent discussion on a brand of CoQ10 that contains that ingredient, Hoosiers said maybe it shouldn't be used by lyme patients. I haven't looked into it yet but I've been taking this product for 2+ years and it helps a lot.
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I may as well be in prison because that's how I feel. I can't believe I was ever a normal person once who walked places, drove, had friends, etc.
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My docs live in their own bubble in that respect and only review test results if given to them by me. 
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