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Posted 1/6/2013 6:05 PM (GMT 0)
Greetings all, I am feeling such a need to write as I'm experiencing a very challenging 3+ weeks of stuff.  I do not have an LLMD yet - that is in process as I gather names, info, etc.  Yet I know to my core that Lyme is in this equation for me.

I have had each of the things I have been feeling now - before.  But I've never had them all together as they are now lasting this long. In the past, things would eventually shift. So far, this is going on so long with no shifting even for a bit. It concerns me and it scares me if I let it.  So I appreciate you all reading this and for your support.

I have had ongoing issues with my neck and my throat -either/both - who knows?  At times, it feels like there's a lump in my throat (right side) when I swallow.  Then, that changes and it becomes more of my neck hurting/pulling/not feeling right.  My throat has not and is not sore. The muscles in my neck - both sides, but stronger on the right side - are not right.  There is no sharp pain - it's just uncomfortable/hurts/is ore. My neck is not stiff. I've had massage and acupuncture on it before and it helped but then it comes right back after a day or so. Some days it's worse than others. The last 3 weeks it's been terrible. It doesn't effect what I eat - I think because it's more neck than throat, if that make sense.

The glands on both sides of my neck hurt.  They are not swollen. They just hurt.

My stomach (esp right side between my right breast and navel area) feels "ick" internally. It's not tender to the touch, no lumps, etc.  It just feels kinda "raw" and hurts.  I do have nausea that comes and goes - lately it's been there more than it's been gone.  It doesn't effect my appetite which seems so weird.

I was diagnosed with acid reflux in the past even though I didn't have the classic symptoms. The meds they put me on (that I took because I was in beyond horrific stomach and back pain) was a Prilosec type drug that caused me so much MORE pain  -which of course, the dr said wasn't possible!  So, I stopped taking it and did more research and came to self diagnose myself as having LOW acid!! So I take HCL -it has helped greatly but now lately with all this discomfort, I don't know whether to keep taking it - not sure if that is in the equation here one way or the other, etc.  It's all so confusing as you all know too well!

I'm having terrible back pain - upper back - mostly right side.  From my bra strap up to the top of my shoulders. It literally feels like my back is breaking in 2.  Heat doesn't help, rest doesn't help. Sitting or laying down doesn't seem to make a difference either way. I think it may be referred pain from my stomach.

Under my arms and down the inside of both arms - all sore -all along the muscles.  Yet, my muscles are not weak -thank goodness.  They hurt and I'm thinking it's nerve pain traveling down the muscle?

Finally, because of all of this or with all of this (who knows?!) I am so fatigued I am barely making it.  Can anyone relate to these symptoms?  Does anyone have any ideas?  I need help, reassurance, something to hold onto. 

I can't thank you enough. I know this is a long post. I am scared and so weary.  Kathleenta

 

Posted 1/7/2013 3:25 AM (GMT 0)
Hi Kathleenta - I can relate the the sore glands and neck area. I also have very sore knees and ribs. When I get the back pain it is lower than yours. One of the things that helps me with the knee, ribs and back pain is "Deep Cold". It's sort of like a cold version of A535. I think that it helps me because the "cold" feeling is pretty intense and I am no longer focussing on the pain but the on the cold feeling. So I don't have a great suggestion, but I do prefer the cold than the pain and it does allow me to get to sleep while sleep is nearly impossible when the pain is bad.
Posted 1/7/2013 3:41 AM (GMT 0)
Have you had your Gallbladder checked?
Posted 1/7/2013 9:37 AM (GMT 0)

Kathleenta,

Did you get a gastroscopy? I kind of recognize some  symptoms I had before.

I took Omeprazole for about 6 years + I had huge bowel problems. It didn't help a bit, the problems just stayed. I had severe stomach pain, upper back pain (left side), shoulder and chest pain, and also inner arm pain. Nothing could help me to get some relief. I had cramps in my oesophagus. It felt as if I had heart problems. First thing my current Dr did was restoring my colonic flora and give me a good treatment against gastritis, and determine the foods that I'm allergic or intolerant to (put me on a severe diet  rolleyes  ). I stopped taking the Omeprazole for 2,5 years, I just didn't need them anymore (now I'm on Pantoprazole because the antibiotics to treat Bartonella are very heavy on my stomach).

I I were you, I would go for a gastroscopy to just dertermine your stomach is ok - it's really tiring to have stomach discomfort.

For the other symptoms: I have them: overwhelming fatigue, the 'lump' at one side of my throat (I had it several times, my GP (not the Dr who's treating me now) couldn't determine the cause of it, it's been a while, but I think he gave me antibiotics, it felt it had the size of a wallnut, it would drive me crazy)

Posted 1/7/2013 4:59 PM (GMT 0)
Thanks all!  I will see about getting the Deep Cold stuff to try. I had my gallbladder removed 4 years ago because I had stomach issues that radiated my back, etc.  All gallbladder tests came out ok, but the GI folks said I should have it removed because nothing else could be accoutning for that pain.  So, I did.  In retrospect, I wish I had not had it removed because I truly think there was nothing wrong with the gallbladder and that the pain/discomfort, etc. was due to Lyme related issues (that I had no knowledge of at that time).  My stomach has not gotten better since the gallbladder removal.

My diet is already very restrictive and very proactively healthy.  I am gluten free, dairy free, meat free with almost no sugar, etc.  I also juice wheat grass to drink almost every day and also do green smoothies.

I seem to almost always have some degree of stomach "stuff" ... but when things "hit" as we say at our house - assuming it's the Lyme - as nothing else can begin to explain all the stuff that I feel (pain, tingling, buzzing, fatigue, headaches, aching glands, etc.), then my stomach stuff goes over the top like it has been.  When my other symptoms lessen, my stomach typically does as well. 

My experiences with GI's (to do the scope, etc.) have been far less than pleasant.  They think it's all in my head or that I need something like prilosec.  They completely discounted some earlier stool testing I had done that showed parasites (I did get treatment from another dr for that) ... they said, "Those tests have no validity and everyone has parasites."  They also don't believe the concept of LOW stomach acidd even exists. Of course they don't - they can't benefit from prescriptions for that ...as there are none - just HCL over the counter, etc.  They truly have treated me like a nut case.  I could look for another GI and the thought of that exhausts me - can anyone relate to the energy drain on the constancy of trying to find a doctor who will listen, respect you, beleive you and really work with you?

I drink hot ginger every morning, do probiotics, digestive enzymes, etc etc.  I recently found a yoghurt that is made with cococut milk so I'm doing that as well.

I am hoping things will shift soon.  I know everyone can relate.  Thanks again, kathleen

Posted 1/7/2013 6:14 PM (GMT 0)
Yes, I can relate to the exhaustion of trying to find an MD that will treat us like human beings instead of like a nutcase. I've seen over 100 doctors in the attempt to understand what is wrong with my body (prior to Lyme diagnosis), and there are only a few who gained my respect as decent, genuinely caring physicians.

Anyway, I think the pain in your belly very well could be from Lyme/coinfections and/or parasites. Or could be biliary-related. Might consider looking up Sphincter of Oddi Dysfunction, as this can cause severe pain and other issues.
Posted 1/7/2013 7:21 PM (GMT 0)
Wow-good for you on your diet! I struggle with this the most. It's hard to afford to eat as healthy as I'd like sometimes...anyway...

As far as your symptoms go, I can absolutely relate. I was Dx'ed with GERD about a year and a half ago. The Rx'ed meds weren't helping my symptoms. The back pain is terrible!!! It doesn't respond to any pain meds I've tried. Heat helps a little but it's temporary (and who can sit on a heating pad all day??) I recently bought some heat patches in case the pain hits while I'm out and/or too busy to lay down. But when it hits it def puts me out of commission. It's no joke!

I've started taking magnesium as I heard it helps with muscle pain. I honestly can't tell what kind of pain is in my upper back, it's hard to explain. But I do think the magnesium might be helping, as I'm getting the pain less often. I used to get it every night, like clock work. That was bad...but then I started getting it during the day too, and that was even worse!! It's nice to be feeling it less often, that's for sure.

Ok, sorry... I'm getting off track...lol! :)

I've also noticed a difference since taking probitotics, and I also take milk thistle for liver detox and I have def noticed some improvements. I feel like I have more energy now...which is great. Even though I still have a lot of pain, I have some energy to "push through" and be somewhat productive. The combination of the pain and fatigue can be devastating, as I'm sure you know!!

I hope you find something that helps. I just added the milk thistle, Magnesium, and probiotics a couple weeks ago and I already notice a difference. I have not seen an LLMD yet, so I'm currently not on any antibiotics.

Best of luck!
Posted 1/7/2013 7:50 PM (GMT 0)
Kathleenta,

When I read your post, it made me inhale deeply!  I have never read anyones description of their pain as close to what I am going through, using the same words I do.  My upper back pain I always say is like it is going to snap in two.  It feels like there are knives in between my vertabrae and that my spine needs to be pushed back into place.  A lot of pressure everywhere.   I also have it around my left shoulder blade and back ribs.  It's like you have been bent over all day and have majorly strained it.  It burns and stings.  I am constantly asking my husband to rub hard to push it back into place, or at least that is what it feels like it needs.  Doesn't help much though.  It radiates across into my ribs.  For some reason it helps me to pound on my back and I often sit and pound on my chest.  Looks odd, but it somehow in a very small degree eases it, not much, but anything helps.  It releases some of the pressure.

My pain from my sternum down to my navel it stings also and feels raw.  It does it sometime on my right and left side.  Sometime all at once.  It radiates to my entire abdomen, and it feels raw, just as you said.  I hurt under my arms and down my side ribs, and now my breasts also hurt like  it is the glands, only they are not swollen.  I too had my gallbladder out in 2004.  Where the scars are from the lapascopic surgery also it really sore, odd that.  Straight down from my sturnum is one scar and the one in my navel also hurts.  It feels like the is a thick cord running straight down to my navel, and that is alway painful.  I can feel the cord. It has been over two years now, and it is slowly spreading to my entire torso.  I have had colonoscopy, gastroscopy, CT scans, ultrasounds, xrays, bone scans, numerous lab work, and they can't find anything.  I look amazing on paper!  I am currently awaiting results from a chest, abdomen and pelvic CT to compare with the one I had last year to see if anything will now show up.  I am very concerned.

My throat feels like there is a lump in there and the muscles in my neck always are tight.  When I bend over I feel my neck tighten up.  I am always rubbing to try and relax my muscles.

I keep telling myself that this is all Lyme related, but in my mind, I worry that it is something else that they have just missed.  If I get any answers, I will let you know. 

I really appreciate your post.  Thank you, it's nice to hear this from someone else and it's not just me.  You described it perfectly!

Posted 1/8/2013 12:20 AM (GMT 0)
Hi kathleenta, welcome!

Lyme disease is horrible on the joints. You might wanna look into treatments for Costochodritis. It causes a lot of back pain, rib pain, and a lot of the issues you were discussing. What it is is inflammation of the joints that connect your ribs to your sternum. It can get so bad that wearing a bra feels unbearable. Wikipedia actually does a great job explaining it and there are some tips on what to do with the pain. When I started treatment, it actually got much worse (just a head's up). Try wearing a good sports bra, that's wht helped me get thru it, because I too couldn't handle the bra straps. Hope that may be some help, and I have attached a link for the costochodritis..

http://en.wikipedia.org/wiki/Costochondritis
Posted 1/8/2013 12:42 AM (GMT 0)
Kathleenta,
Are you detoxing? If so, may I ask what all you are doing to detox?

Have you been thoroughly checked for either hypo or hyper Thyroiditis? That would explain the outside of your throat pain and discomfort. Lots of us have Hashi's due to Lyme.

You said, ". My neck is not stiff. I've had massage and acupuncture on it before and it helped but then it comes right back after a day or so. Some days it's worse than others. The last 3 weeks it's been terrible. It doesn't effect what I eat - I think because it's more neck than throat, if that make sense."

I get this as well, this is separate from the swollen glands issue. For me, this is just a tightening of the muscles (kind of like a minor cramp) and they won't release. I get this fairly frequently still. I use heat for a bit, then switch to ice before I go to bed in order to get to sleep at night.

Are you constipated or do you have diarrhea? I deal with a lot of constipation and I get sore spots like that often enough.

You could be having nerve pain in lots of the areas that you mentioned also.

The fatigue is quite common for those with chronic Lyme. B-12 in the Methyl form is quite helpful. Be sure to get the Methyl type though, as it's the form that is ready for the body to absorb. The Cyano type has to be converted to the Methyl type first, taking precious energy from our bodies! Some get B-12 shots from their LLMD's, and some here use sublingual (under the tongue) B12.
Posted 1/9/2013 3:33 AM (GMT 0)
Thank you all so much for your responses and information and support. 

I woke up today so nauseous after dreaming off and on about getting punched in the stomach -I'm sure due to this darn stomach discomfort.  However, throughout the day today my upper back pain was less wink   but then as soon as I ate dinner a while ago, it came on instantly and bad!  So, I don't know if the bad pain relates to reflux or what? 

How to even know?  I've got a hot water bottle on my back now and that helps get my mind off the pain a bit.

I am going for lymphatic massage (1st time) tomorrow -so I hope that helps me somehow with something.

Today the large muscles in the front of both legs feel sore - like I've run a marathon or like something "frogged" them their fist. What in the world?!

In terms of detoxing .... I have no clue if I'm detoxing or not.  I'll see if you more knowledgeable folks here can chime in. I'm not on any Lyme treatment ...waiting to find and make an appointment with LLMD.  Here is what I am doing:

Taking my regular supplements (Calcium, Vid D, E, etc.) as well as probiotics and digestive enzymes.

I do the Epsom salt baths from time to time.

I dry brush before showering most mornings.

I drink fresh wheatgrass every morning - 2-3 oz.  I know this is a strong detoxifer in general.

So, I guess my question is - can a person be detoxing if they're not on a treatment?  I've read too where there is "die off" as a natural cycle too - so is that detoxing?  Or is it only considered detoxing if you're taking something or doing something to try and shed the die off?  I don't even know if that question makes sense!

Thanks again everyone.  I am so grateful to have found this site!!! 

Posted 1/9/2013 4:21 PM (GMT 0)
LOL! Hang in there, Kathleenta! There's lots of confusing stuff here! Feel free to ask all the questions you need - there is no dumb questions if you don't know the answer!!

By detoxing, I mean doing this to encourage your body to rid itself of more toxins than it will be able to do on it's own. So that includes things like the Epsom Salt/peroxide soaks, dry skin brushing, using saunas, drinking lots of water (with lemon if you aren't having lots of troubles with muscle cramps/spasms/twitches), and including greens in your routine. So you are doing some - good for you! I would suggest that you increase the number of times you do the Epsom Salt/peroxide bath or start including Epsom salt/peroxide foot soaks, and be sure you are including plenty of vitamin C in with those supplements.

Yes, there is a certain amount of die off that occurs naturally. When doing things that can increase this amount of die off - abx, abx type herbs, raising the body temp., exercising, etc. - you will likely notice an increase in symptoms - as herx. By encouraging our body to detox and helping it to do a better job of detoxing, we will lessen the effects of the toxins from the die off.

Here is an article that explains the toxins affect on us better than I can:
www.encognitive.com/node/5768
Posted 1/10/2013 8:06 AM (GMT 0)
Kathleen- I wondered the same things! I haven't started abx yet, but theu detox baths I've learned that you definitely can start the process before starting treatment.

I actually had to cut back to foot baths because my last herx was pretty serious, and it started after a long soak in Epsom salts and peroxide. At first, I would just get very achy and really tired after these baths. But as I continues my symptoms increased, and now I can't even take a warm shower without getting a strange rash all over my body!

It's very confusing to me, as I know a herx means treatment/detox is working, but it's hard to know when to push forward and when to back off when the healing process makes you feel so darn crappy.

Good luck, feel better soon!!
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