Many Symptoms, No answers

[Big_Snack]

I have been having a boat load of different, changing symptoms, for the last 6 months. It all started when I thought I was having a heart attack, it turned out it was possibly indigestion with an anxiety attack.

I was tested for IGM I believe that's what it is for LYME, and it was at .70, we waited a month and re tested and its not at .75, My Doctor is now giving me antibiotics for 2 weeks and its going to re test. He also started me on Xanax and Prilosec,  just looking for some opinions.

My Symptoms now are
Feels like bubbling under my skin
Feeling of Vibrations and Pulsing (not heart beat)
Feeling Heavy pulse in eyes, I can visually see the pulse
Light non painful muscle twitching and spasms.
Pressure in Temples
Chest pressure comes and goes.

For the Last 6 months I have had the following test, all coming back fine.
Blood Work
Endoscopy
Colonoscopy  
Cat Scan of Brain
at Least 5 EKGS
Echo Stress Test
MRI of Brain, Upper, and Mid Back
Nerve Conduction
EMG (When they stick the Needle in your muscle and look at waves)

[mojogal]

Thanks for info Bob

[nutrinut_bob]

Not bad Jackie, I've been taking herbs that are supposed to be effective against toxoplasma gondi, and very slowly getting better.   T. gondi is something your doctor should also test you for Big_Snack, as ticks can also carry it, and 30% or more of us have it, unknowingly.

[JackieCalifornia]

That's good data to have, Bob.  I had no idea about this aspect.  Thanks, and hope you're doing all right.

[nutrinut_bob]

"Feels like bubbling under my skin".  That one I know.  Wonder what the level of neutrophils the testing you've had done has found?  Neutrophils are immune cells that form traps, trying to keep invaders confined.  The traps are known as Neutrophil Excellular Traps, or NETs.  Since we've not yet been able to determine just what I have, other than the feline worms that I've killed, I'm afraid I can't help you more than that.  But it could be a little clue that'll lead you to something else.

[JackieCalifornia]

Sorry to hear you're still dealing with the symptoms -- but good for you for plowing ahead.  It's what I'd do too.  

There are Lyme-aware docs that we don't know the names of here, since we generally don't publish them, in case the state medical authorities decide to crack down on a doc who is following the more progressive approaches to Lyme diagnosis and treatment.  It doesn't mean anything that the name you mention isn't familiar to me or others.

Let us know how the appointment(s) go, and what you hear back.  Hope you feel better soon -- hang in there!

[Big_Snack]

Well, I seen my General Doctor again, he took me off the Doxy. He is sending me to see a Neurologist Dec 18th. I am still feeling facial numbness and weird sensations. Also, I am still getting the pressure in center of chest. The Muscle twitching as gotten less intense/frequent. Still have some back pain and soreness in my center of back. I believe most of my symptoms I believe were anxiety.

I am not ruling out lyme, my mother is getting a referral from a friend to see a Lyme/Infectious Disease specialist his name is Dr. Berquist at Indiana Hospital, in Indiana PA.

[JackieCalifornia]

Lyme and its co-infections don't necessarily respond to the same antibiotics, nor to the antibiotics you may have been given for your appendix.

Many of us never see a tick or get a rash, so that is not a reliable marker of possible infection.  That's part of what is hard for docs too:  no consistent set of symptoms, and when the co-infections get mixed in, and depending on each individual's immune system reaction, the combinations of symptoms and effective treatments simply multiply.

That's partly why it takes an expert in Lyme and the co-infections to take all these things into account.

Some infectious disease (ID) docs do understand Lyme, but as a group, their standards for diagnosing and treating Lyme tend to fall short.  I hope your doc is an exception to the rule, but it's a reasonable place to start.

Let us know how you do and what you hear back, ok?  We've all been there.  Best wishes --

[Big_Snack]

Thanks for the info. I see my general doctor again tuesday. There is an infectious Disease specialists in my area that deals with lyme, I might get a referral to see him immediately.

My symptoms now include Pressure in temples, wierd bubbeling under skin feeling in many parts of my body, I feel an internal vibration in my body at times, weird chest discomfort like a light pressure, on my elbows it feels like my skin is pulling when i bend them, and my left shin is similar, the spasms have gotten less often since starting the meds.

Question, I got the tick bites right before I got an Antibiotics for my appendix, wouldnt the meds then kill the lyme before It could start. I know where the bites were and never seen a rash or anything. The only symptom was a weird cough and some frequent painful knots in my back.
Then since july it has been getting weird

[mojogal]

Ditto Jackie. Wow seeing all those ticks is amazing. Definitely get a Lyme doctor.

[JackieCalifornia]

Part 3 of 3:
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If you need help finding a Lyme specialist, you can search online for

     pennsylvania lyme disease

or a similar search and see what you get.
======================================
Also email to

     contact [at] ILADS [dot] org

and tell them where you are located and where you can travel to (like the nearest big city), and they will get back to you, but don't assume that a name that comes from ILADS is some kind of perfect doc.  There's no 'test' to be an ILADS doc ... it's just a voluntary association for docs who thinks progressive thoughts about Lyme.  There are excellent docs there, and then there are docs who believe they are excellent docs, if you get my drift.

Hope that helps, let us know how you do and if you need other help, okay?  We've all been where you are.  

[end]

[JackieCalifornia]

[Sorry, the system locked up and then posted the first part of my message three times.  Here's part 2:]
------------------------------------------------------------------------------------------
Lyme is a tricky beast, and deserves something other than the last possibility on a very long list of things to check off.  IMO, Lyme should not be the last thing to consider, because it and its co-infections (other diseases carried by the same ticks as Lyme) require extended treatment with antibiotics, and the sooner you start, the better.

I think I mentioned above here in an earlier message that doxy is the traditional treatment for Lyme, but a few weeks of doxy is too often not effective, esp. if the infection has been in place for anything more than a few days since the bite.

(One aspect of Lyme that gets overlooked is re-infection.  Just judging from people I know and have corresponded with here and elsewhere, and based on my own experience, a healthy immune system can often fend off the effects of a Lyme infection until a re-infection:  a bite from another tick, and perhaps that tick has additional co-infections.  I believe that is what happened to me ... I was low-level miserable for a year or so, then suddenly the symptoms ramped up after another trip to a leafy green place.

The best advice I have is to find a Lyme specialist, which can be any kind of a doc, and too often infectious disease (ID) docs are *not* among those who think progressive thoughts about Lyme.  Your doc's approach as outlined above sounds like a traditional doc who knows a lot, but unfortunately not much about Lyme and its coinfections (which are other diseases carried by the same ticks as Lyme, but need different testing and treatment.)  

[continued in next message box]

[JackieCalifornia]

Wow, three ticks!  A lot of us never saw the tick that got us.

Given that history, I would definitely find a Lyme specialist.  I just did a search online for Excela, and if I guessed right, you're in the Pittsburgh PA area, yes?  There is an article in the online Post-Gazette, dated 29 Mar 2012, by Pohla Smith, that gives a pretty even-handed review of Lyme etc., tho it is very careful not to be harsh toward the Lyme-deniers.  That article might have some useful leads for you.

About the IgM test, you say:

"I was tested for IGM I believe that's what it is for LYME, and it was at .70, we waited a month and re tested and its not at .75, My Doctor is now giving me antibiotics for 2 weeks and its going to re test. He also started me on Xanax and Prilosec,  just looking for some opinions."

It sounds like the doc is flailing, not sure what to do.  He's testing you for everything, which is thoughtful, but it takes time and money and is largely ignoring the possibility of Lyme, esp. given your recent history of tick bites.

I'm not medically trained, but had Lyme and a co-infection (another disease also carried by the Lyme tick), and either docs think big thoughts about Lyme, or it is the last thing on their list.  In the meantime, while the doc is working the way through his/her laundry list of things to consider, you're not getting well, and for some of us, we get worse over time.  

[continued in next message box below]

[JackieCalifornia]

Wow, three ticks!  A lot of us never saw the tick that got us.

Given that history, I would definitely find a Lyme specialist.  I just did a search online for Excela, and if I guessed right, you're in the Pittsburgh PA area, yes?  There is an article in the online Post-Gazette, dated 29 Mar 2012, by Pohla Smith, that gives a pretty even-handed review of Lyme etc., tho it is very careful not to be harsh toward the Lyme-deniers.  That article might have some useful leads for you.

About the IgM test, you say:

"I was tested for IGM I believe that's what it is for LYME, and it was at .70, we waited a month and re tested and its not at .75, My Doctor is now giving me antibiotics for 2 weeks and its going to re test. He also started me on Xanax and Prilosec,  just looking for some opinions."

It sounds like the doc is flailing, not sure what to do.  He's testing you for everything, which is thoughtful, but it takes time and money and is largely ignoring the possibility of Lyme, esp. given your recent history of tick bites.

I'm not medically trained, but had Lyme and a co-infection (another disease also carried by the Lyme tick), and either docs think big thoughts about Lyme, or it is the last thing on their list.  In the meantime, while the doc is working the way through his/her laundry list of things to consider, you're not getting well, and for some of us, we get worse over time.  

[continued in next message box below]

[JackieCalifornia]

Wow, three ticks!  A lot of us never saw the tick that got us.

Given that history, I would definitely find a Lyme specialist.  I just did a search online for Excela, and if I guessed right, you're in the Pittsburgh PA area, yes?  There is an article in the online Post-Gazette, dated 29 Mar 2012, by Pohla Smith, that gives a pretty even-handed review of Lyme etc., tho it is very careful not to be harsh toward the Lyme-deniers.  That article might have some useful leads for you.

About the IgM test, you say:

"I was tested for IGM I believe that's what it is for LYME, and it was at .70, we waited a month and re tested and its not at .75, My Doctor is now giving me antibiotics for 2 weeks and its going to re test. He also started me on Xanax and Prilosec,  just looking for some opinions."

It sounds like the doc is flailing, not sure what to do.  He's testing you for everything, which is thoughtful, but it takes time and money and is largely ignoring the possibility of Lyme, esp. given your recent history of tick bites.

I'm not medically trained, but had Lyme and a co-infection (another disease also carried by the Lyme tick), and either docs think big thoughts about Lyme, or it is the last thing on their list.  In the meantime, while the doc is working the way through his/her laundry list of things to consider, you're not getting well, and for some of us, we get worse over time.  

[continued in next message box below]

[Big_Snack]

Thank, I forgot to mention, I did have 3 tick bites last deer hunting season, 2 of the three ticks were imbedded, all 3 were deer ticks with the orange spot on back. One bite on my neck and the other 2 on my armpit and underarm.

[JackieCalifornia]

and PS, the muscle twitching and spasms could be magnesium (Mg) deficiency.  Lyme bacteria use up Mg in their reproductive process.  You could try Mg supplements, any brand ending in "-ate", like Mg malate, orotate, aspartate, citrate, etc.  It helped me a lot, but be sure to tell your doc what supplments you are taking so the doc can take it into account.

And I've read that the CalMag combo isn't the greatest in Lyme.  Dunno why.

[JackieCalifornia]

(btw, great screen name.)

I'm not familiar with the scale Excela runs on or with them generally.  Can you give more details?

Doxy is the old standard medicine for Lyme, but is effective only early in the infection and does not take into account the fact that about half of those with Lyme also got another infection or two or three from the same tick.  That's the kind of Big_Think a Lyme specialist provides.

Dunno about the appendix complications, and I'm not medically trained.  That said, I would just off the top of my head say it's not related, tho if you were still run down from recovering from surgery, maybe your immune system had a hard time fighting off the new infection(s) .... and I noticed in your initial post you've had these symptoms for abt 6 months, which puts you back in May, which is tick-hatching season.

Lyme is pretty much epidemic these days, not rare like the Lyme-deniers like to say.

Others here have had symptoms of tingling and numbness that you mention, but I'm not one of the fortunate that way.

If you can give more test details, we can perhaps give more comments.

[Big_Snack]

Yes, I did request the results being sent to me in case I choose to see other doctors for more opinions. I left out I am having some pressure or numbness in parts of my jaw, face, elbow, and shin. It doesnt feel like total numbness more just wierd feelings and pressure sensations.

It was done at the Excela health Clinical Lab in Latrobe,

It says LYME ANTIBODIES, TOTAL 0.75

Just an Update.

I am prescribed to DOXYCYCLINE HYCLATE 100 MG (Twice a Day)

Also, Last December I had an emergency removal of my appendix, the doctors think it had a slow rupture for months or a year since I was going to the doctor for months for side pain but it was always overlooked and I just toughed it out, until they found a Calcium Build up at the appendix area during a CT scan, later they found my appendix during a ultra sound it was completely shriveled down and wrapped around my bowel and colon, they had to remove a piece of my colon and bowel due to the inflammation.  Could something be wrong with my recovering from this.

[JackieCalifornia]

PS, neglected to say, there's no *harm* in going through with the tests your doc is proposing, but it may not adequately cover the possibility of Lyme and other infections the Lyme ticks often carry.

You've certainly been checked for a boatload of other things, and the main difficulty in ruling out Lyme is that the tests are not terribly accurate, and yet many (most) docs rely heavily on the test results.

If you have a copy of the detailed Lyme test results and can post those numbers, and which lab they are from, we might be able to suggest more possibilities.

There are different kinds of Lyme tests, none of which is perfect, but some are much better than others, but not all docs use the better ones.

Others here may be able to say more, but having more data from the test results would be helpful.

[JackieCalifornia]

Welcome -- sorry to hear about your situation.

I agree with Mojo -- finding an LLMD (not an official title or degree, just patient slang) is what I would do.  I went through 20 very good docs who were totally clueless about what turned out to be Lyme and another disease often carried by the same ticks.

Mainstream medicine just doesn't take Lyme seriously.  Your doc is doing the usual mainstream things, good for the doc -- but that's as far as the mainstream playbook goes.

You dont' say what part of the country you are in -- some places it's hard to find an LLMD than others, but I would do whatever it takes to find one.

Let us know how we can help -- we've all been where you are.

Take care --

[mojogal]

I am not medically trained but can only give you my opinion, I am also ill, so others will give you more detailed info.
Your symptoms don't seem to be clear cut Lyme. The only way to really find out is to go to a Lyme literate doc, or LLMD. To find one near you, go to our association, ILADS dot org and email them for a name near where you live. They use a special lab called IgeneX. Mainstream labs come back false negative. While you are on the association web site, read Burascano's treatment guidelines. It's got good info.
Keep us posted. Good luck,