Possible lymes with a lot of weird symptoms

[Stclairstv]

Hello all I have some questions. Couple weeks ago I was fine except for ringing in my left ear and headache since August. I did have some joint pain but I lift weights and thought that was the pain and still could be. Now 2 weeks ago I was asleep and woke up with a crazy high heart rate, felt like I was gonna die. Scared me really bad. Got really weak and nervouse. It happened 3 more time next day so I went to the ER. Of course all things heart and thyroid came back normal. 3 days later started losing feeling in left arm with tingling. Went to dr they said panick attacks. No way I'm very calm person.  So 2 more days later had what I describe as something attacking my body. Lymphnodes would swell up and huge pressure through my head ears and eyes. Left arm would tingle and somewhat hurt near my elbow and wrist. Also felt like I was losing little feeling in my left leg. Breathing felt like was not right. Suddenly I remembered I had been bit by a tck in August. I pulled it out of my leg. It was itching that's how I found it. Don't think I ever had the rash but I did get a rash on my body in random spots that went away. Called dr and they said yes my symptoms do reassemble lymes. Test came back negative. I never saw the results just a letter from dr. Dr also never took next steps to finding what's wrong. Well symptoms got worse started getting tingling in left side of back and ringing more intense. Pressure in face head neck would just come on intense. Face even went numb  by this time its a week since the heart stuff  no more heart issues  Burning feeling in arm and neck also. Went back to dr and he basically would not listen and said I needed a neurologist. Well that appt is not till feb 10 2014. I went off. Told him that he needs to treat the symptoms not the test.  He would not test again. Now I know there is even a law past on lymes here in Va stating 50% test can be negative and I am supposed to receive a notice. Asked bout that and he seemed embarrassed. So in the end he did prescribe me 100mg twice day doxycycline. In line to get the meds I almost past out. Ended up in ER with ct scan. All things fine again. I have lost 12 pounds in 2 weeks. Had bad sweats at nite during all this. Weird bursts of energy at times. Fatigued at times. Even fine at times. Really odd at times I eat a big meal the symptoms would come on strong.  So to end the long story this is where I'm at. On meds feel ok at times, sick at times. Just wanna make sure I did the right thing by pressing the dr. He did talk with another dr and they both agreed this was next step. But it took me calling and going in 4 times in 2 weeks for them to listen.  I did have tick in me, I know there doesn't have to be a rash or even have tick on you. Thanks

[Ricobord]

Just to add to the good info offered so far... Bartonella often causes spots in the vision (I've had one for a couple years) as well as muscle pain.  I encourage you to get tested for it.  Just know that doctors are oblivious to Bartonella and that lab testing is sometimes false negative, just as Lyme testing can be.  You'll need to se a LLMD for proper diagnosis and treatment.

Also, regarding the string-like things you saw, google "Rope Parasites" to see if that might be an explanation for what you saw.  They don't move when they're outside the body, and they were mistaken for fiber or strips of intestinal lining for a long time simply because they don't look alive and they don't move. Someone finally examined one closely and discovered they're parasites.  Genetic testing determined they're helminths. Initial studies have shown they're surprisingly common.

[JackieCalifornia]

Greetings.  Sorry things are not all fixed already.

Sounds like maybe you have been partially treated, but doxy only works on Lyme (not on coinfections) and not on the Lyme bacteria that are hiding in cartilage and other places with low blood flow in your body (as they do after infection has been around a while, which yours likely has).  

It usually takes a combo of other kinds of antibiotics, and only an LLMD will do that.  Your current doc sounds very mainstream, however, and just doxy won't work except (1) almost immediately after being bitten AND (2) only if you have just Lyme and no co-infections (but maybe half the time or more, Lyme ticks carry more than just Lyme, and different meds are needed).

It's good that you made some improvement, but as LazyMoose says, you need a Lyme specialist.  If you email to

                contact   [at]    ILADS    [dot]    org

and tell them where you are located and how far you can travel, they can send you names of ILADS members -- meaning docs who understand Lyme.  Usually.  There is no test to be an ILADS member as far as I know, and some of them are duds, but it's imo the best place to start.  

I don't see in a quick scan of your previous posts what area/state you live in, but if you let us know if you're 'near Chicago' or whatever, someone here might have a suggestion.

Also, something I would do in addition to an ILADS query would be to search online for something like

                lyme disease group chicago [using your city or area]

or just       lyme disease chicago  

and you may find some good local patient groups who are often the best informed about the docs nearby.  I would definitely try that if you have not already.

---------- about the medical bills and insurance:

My LLMD didn't take insurance, but gave a bill with enough detail that my insurance company accepted it for a claim from me.  So I paid the doc, and then my insurance paid me.  It was a big, well-known ins. co, and if they had balked, I wouldnt' have been surprised, but they didn't.  Never a quibble, and they reimbursed me for testing, for the doc's office visits, and for meds (antibiotics) at regular reimbursement rates under my plan.

Above all:  don't give up!  Keep us posted, okay?

[LazyMoose]

***The big picture**

Your getting some helpful advice here. The post is long, pardon me for just skimming over it.

I'm no super Lyme expert, but my health  was were yours is at, only 20 years ago. As a young man I was a well tuned national winning athlete while at the same time battling some strange illness that eventually change my life - as it was slowly taking over my body. All kinds of symptoms that regular MDs were clueless about and wasted my time as I got worse, turned chronic. I suspected Lyme, but got no help. I went to different docs for each body part symptom. No one looked at the body as a whole. I learned how to get around my handicaps on my own and it was difficult to say the least, but I still functioned because I had to, being stubborn headed help a lot.

So, I somewhat gave up on normal doctors and learned about natural healing, how specific herbs help specific problems the library,  internet and vitamin/ health food store became a way of life.

The day I awoke with about %80 of my vision gone for one hour was when I got serious. There were signs and lab numbers that showed my whole body was showing early signs of shutting down - dieing. I "souped up" my natural medicine approach on my own and got better, but not completely.

NOW- Last year I dove deeper into tick borne illness info - where your at now. Insurance accepting LLMDs are very few between, because the correct way to treat Lyme is considered experimental medicine in the insurance companies eyes. I learned of the LLMDs within 300 miles from the LYME associations and people at privately owned local supplement stores - they have local connections.

Most LLMDs have a waiting list. Use this time wisely. If you have to wait, get on a couple of waiting lists if you can cancel a few days before if need be.

LLMDs are not even the same. The ones that are also experienced "functional medicine MDs" ( a newer term) are a good place to start since they treat the whole body not just Lyme and co-infections. Its costly, but treating specific symptoms with specific herbs can help jump start the body for the healing process. I did this partly years ago, I believe it halted and healed many parts of my body. This sets up an easier path for the antibiotics to do there job.

For 4 weeks after 3 antibiotics, I felt really bad, it was hard to work, sleep anything but lay on the couch. I guess that was herxing? One of the many symptoms I have is Hashimoto  thyroid disease, the LYME antibiotics and or natural supplements have lowered my need for thyroid med. What a surprise, I hope this continues.

I had muscle adhesion over my whole body (it developed into slight scoliosis), Drs were baffled, chiros were surprised. Now it is loosening up, but since my muscles are damaged I continue to practice Active Release Therapy on my tendons with increased progress (last 2 years). I can eat gluten now, can sleep better, my adrenals are  healing, my leaky gut is healing, I dont get dizzy or go blind, the anxiety is greatly improved. A lot of this was from years of improving from natural supplements as I think the Lyme went dormant for a while but left my body a damaged a mess.

To get back on track of this post, I am a believer in the whole body approach with supplements and antibiotics if you've had symptoms for a long time or over the whole body like I did. A functional medicine LLMD is just another more detailed approach that some can benefit from.

By the looks of your last post, your improving already, awesome. Get on some waiting lists of LLMDs, regular Drs are only drug perscribers and usually only prescribe antibiotics for a limited tome, which is not enough.

[Stclairstv]

also had mri of the brain and it was all fine. Went to eye doctor and she said I had some spots in my eyes and that she would have had me tested for lymes because of that.  My eyes are healthy

[Stclairstv]

Well guys i am back for a update, went through a small second dose of the doxy and near the end of it I felt about 75% better.  Been about 3 weeks off the doxy starting to feel bad again.  Head pressure, really sore and achy calve muscles.  Calves hurt bad.  Can sit all day and hurt, walk hurt, sleep hurt.  Lifted weights 2 weeks ago and was sore for week and  half and it hurt really bad(all muscles that I worked..  Never had this problem before.  Any activity make muscles  hurt.  So not sure what to do now.  Is this a coinfection?  Most of the other symptoms are gone.  I just have really achy calves, headache/pressure/ringing in ears.  Cold chills every so often.  No fever.  Neck and back get stiff or hurt.  Just dont feel right again.  I never did test pos for lymes.  Thanks

[Stclairstv]

Well second test western blot came back negative.  Hmmm. Been on doxy almost 2 weeks now. Symptoms have been getting better. Dr canceled my infectious disease appt without my concent based on the the test. I clearly received a letter from dr stating test could be wrong so why would he cancel my appt.   on a second but weird amd to much info note my stool has had some weird flat string like things in it. Not moving. Flat.about 1.5 inches. Could be fiber I guess but I eat veggies all the time and never noticed it.  Bowel has been off, not going for days. That could be the doxy.  

[Stclairstv]

So is having to pee every 40 mins at night part of this too. And feeling dehydrated. Dry mouth. Assuming this is the lymes leaving the body?

[mojogal]

Ditto Jackie. I remember how frustrating it was Until you finally find a Lyme literate Dr and things will get better.

Healing thoughts for you.

[JackieCalifornia]

Yes, dealing with the medical community on these issues can be very frustrating, and even scary.  All the more reason to find a knowledgeable MD.  hang in there, and keep plowing ahead --

[Stclairstv]

Well symptoms now seem to be slowing. I go 24 hours and feel ok the 24 hours feeling rough. Now it seems 30 hours ok then about 15 hours bad. Plus new symptom of left eye feeling fuzzy not really blurry. Slightly foggy.   But man when the bad comes on its scary. I assume it's little panick attacks cause I feel like I'm gonna die and get scared and nervous for no reason plus I have to pee like crazy during this. Hands and wrist get tight and tingly. Ringing in ear gets louder.  I will keep posting as things happen. Dr ordered another test finally. Western blot. Still not testing for co infections. This process is so slow it makes me mad that we are held up like this. Just cure us. Month into this Is not except able for fact is I'm not diagnosed with anything and there only checking for one thing. Health care is too big of money biz than actually caring for people.

[Stclairstv]

Heart issue was first thing to happen 3 weeks ago. I was on a steroid for what they thought was sinus infection. Had rapid heartbeat 4 times in one day on the last dose of steroids. Was on kefflex anbx also. I went to er all things fine. Dr said I had a reaction to the steroid but I'm sure he really had no idea. That's when I remembered the tick 2 months ago. So rapid  heart was first. then all these other symptoms couple days later. If I do have lymes then that steroid was super bad to have taken. I'm assuming all that did was super charge the lymes reproduction.   Had chest X-ray blood work and EKG.  All fine. ct scan fine. Er blood work fine. I just post here to see similar stories and symptoms cause my drs seem to know nothing and have never once called to see how I was feeling. Even urgent care called me for sinus infection. People who have been through are far more knowledgable than my dr. :)

[JackieCalifornia]

Don't be shy about calling your doc's office or message service to report anything more than moderately annoying.  How you are feeling may be perfectly okay (but annoying), or it may be something more serious, like a medication reaction or who knows what.  

Sometimes a medication change or adjustment is in order, but that's for only the doc to say.  The package insert that came with the meds usually has a list of side effects that you should call your doc about -- check it and then call if you have any doubt, okay?  

In particular I would think breathing and heart issues might be of concern, but no one here is medically trained, so we really can't say.  Once you report a particular symptom and the doc says it's okay but call if 'X' happens, then you'll know better where the boundaries are.

Breathing and heart are right up there at the top of the list -- so think about making a call before it's later in the evening.  Let us know how you do and what you hear back, okay?

[Stclairstv]

So far the things that worry me most are constant dull pain In left side chest. This all started with the heart going nuts. Then ringing bothers me and the lack of air I'm getting when I breathe at moments. Feels like I have cotton balls in my throat that's blocking air.  The numbness is steadily goin down. Memory was good today. Vertigo is there at moments and I think it is due to head and ear pressure.  Balance was good. Been on meds 4 days now. Goin up steps wears me out. Just 3 weeks ago I was lifting weights and running miles. I'm pressing on. :)

[JackieCalifornia]

I kept a document open on my computer every day, a chart with columns for

1 -- the date,

2 -- what meds/vits I took at what time and how much,

3 -- how I felt (if anything strange, I'd put the time down) and slept (and for how long) and

4 -- what I ate and drank.

Then before my next doc's appointment, I would go back through the chart and see what trends were there generally, write down a short summary of that (since my memory was somewhere in a fog bank).  

I would make a short summary in writing and carry it in my hand (so I wouldn't forget it) and read it to the doc if I went blank.  My memory was really useless, so I compensated that way. I also carried a full printout since the last meeting with the doc, just in case.  Most docs don't have time to read it all, but one of my later docs did.  

The sensations you are having may be of interest to your doc at your next appointment, and of course if you feel that anything is beyond reasonable, call your doc sooner.

I didn't have the specific sensations you are describing, but Lyme is tricky like that -- different in everyone.  Be sure to relate episodes like that to your doc, and from your notes tell the doc how long they last and how often they occur.  

[Stclairstv]

also when you guys were goin through this were there times just out of the blue it seems it gets really quiet in my head and I get a sinking feeling in my chest and it scares me and make me more alert?  I mean its hard to explain any of what has and is goin on.

[JackieCalifornia]

My LLMD didn't take insurance either -- I think there are several reasons:

-- the doc would have to hire a platoon of billing clerks to deal with the insurance companies, so to keep overhead costs down, the doc just has you pay, then you file with your ins. co. for reimbursement.  That used to be the usual way with many docs, and is how my LLMD worked.

-- there is also the possibility that your ins. company will balk at the treatment as being outside what is unfortunately called mainstream medical opinion about Lyme -- as in:  treating for longer than a couple of weeks.  The doc should focus on practicing medicine, not the care and feeding of insurance company billing practices, but some docs do have the staff to accept insurance and deal with the arguments from the insurance companies.

-- there is imo nothing dodgy about a doc who doesn't want to have more billing clerks than nurses, but it's up to you if you want to find a doc with a fully-staffed back office.  

Suggestion:  get diagnosed by the doc you have found, and then figure out what that means for the long haul with regard to costs and billing.  If your insurance balks and you can't afford the meds or the doc, then find another doc.

[Stclairstv]

Does it take long and any problems dealing with insurance?

[mojogal]

Hard to find an LLMD that will take insurance. Mine makes me pay up front and get reimbursed too.

[Stclairstv]

Found a doc near me. But wants payment upfront then says I can get reimbursed from insurance. I don't like that.  I will be calling my insurance and asking them to locate me a doc that is covered. Will also call my doc and demand a referral. I'm a stay at home dad with 3 kids so money is on my mind as well. I know living is more important but you know how it is.

[cave76]

Yes, I've had almost every symptom you describe with others thrown in.
Only long term antibiotics helped that----and I mean long term.

But I still have symptoms. One is sort of like you describe. I'll wake up and I feel like I'm paralyzed in the legs. But of course I'm not. Only long experience  has taught me not to panic over that, Sort of! LOL

The important thing (the REALLY important thing) is for you to find a doctor who is a member of ILADS or one who treats according to the ILADS guidelines or Dr. B's Guidelines.

[mojogal]

The brain fog or Lyme brain is very common. It is very scary when it first comes on. The tingling is common too. I sent you a PM.

[Stclairstv]

Plus the numbness in arm and leg have turned to more of a pain now.  I feel sometimes like my body is under attack or it is attacking something. I get this energy and ringing in ears and feels like lava is flowing through parts of my body.  I have done tins of reading and am pretty sure I have lymes. Just looking for dr near Roanoke va.

[Stclairstv]

Something else I forgot in my symptoms is I get weird teeth pain when I get pressure in my ears. I assume it's just pressure

[Stclairstv]

New symptom today. Was on phone and could not talk or think. Nothing would come out. Scared the hell out of me. Before this I had woke up with parts of my body tingling like pins needles but not too bad. Had also eaten about 30 mins before this and got really fatigued and tried to sleep then the tingles set in and woke me up.  Thanks for posts, would love to know if others have had theses symptoms and any other symptoms I have. It makes me feel somewhat better because I have not been diagnosed with lymes just treated.