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3054080 tn?1358722856

Another Symptoms Question :)

Hello, everyone!  I originally posted on the MS forum as I have been experiencing some symptoms that, at first appearance, appear to fit that criteria.  Brief background:  Diagnosed with degenerating vertebrae at C5 & 6, compressed disc, and bone spurs in 2007.  Have been in a pain management program since then and my treatment plan includes physical and massage therapy, trigger point injections, regular exercise (am within appropriate weight range for height and age), and medication.  Overall this has helped me maintain a fairly active lifestyle and allowed me to manage my pain.

Within the last nine months, and markedly so during the last four weeks, I have been experiencing vertigo, bumping into things, difficulty going down the stairs (like my right foot doesn't know where to go, and when I look down I don't know where to place it--have fallen down the stairs twice), short-term memory loss, difficulty staying on task, forgetting the names of common things or calling them by the wrong name, going "blank" in mid-sentence, the dropsies, shocks and zaps at times if I move my head a certain way, stumbling over nothing (my right foot comes down before it is supposed to and I try to step too soon with my left, causing me to stumble), fatigue (big-time, especially in the mornings), heat-sensitivity, pain at the base of my skull on the right side, vision blurring at times, itching, sensations as though something is biting me or crawling on me (have used lotions and cremes to no avail), thrumming or feeling as though a current is running through me, tingling on the bottom of my feet as one would feel if using a foot massager.  The scariest of all (well, up until Sunday) is that twice now I have had what I call a "momentary paralysis" where I will be laying down and then suddenly my middle feels like it is being squeezed and my muscles tense and for a few seconds I can't move.  My muscles all over were very sore after this.

I was hospitalized in May, 2006, due to what was diagnosed as an allergic reaction to a tick bite.  I had a rash and fever and ached all over (not to mention the itching!!), so DH took me to the ER.  They immediately took me back and I was soon admitted.  They ran a bunch of tests, and a CDC doctor examined me.  The bite was on my shoulder.  There was no tick, I had no idea what had bitten me--thought it may have been a spider.  I have had many tick bites in my life and never a reaction to any of them, so I was a bit puzzled about the allergic reaction diagnosis.  I was released a day and a half later with prescriptions for Doxycycline, Prednisone, Triamcinolone ointment, and Lortab 5/500.  The CDC doctor specifically told me I did not have Lyme's.  However, it appears that perhaps I had an undiagnosed case.  Looking back, I have had some of these symptoms in the past, just not so many at once.  Do Lyme symptoms come and go, like flare-ups?

I may have multiple issues going on which definitely complicates things.  Twice now I have had the "freezing" or "momentary paralysis" (the latest being on Sunday).  I also had a horrifying experience later Sunday evening that was even worse and very scary.  Was laying down and suddenly, out of nowhere, it felt as though I were being stabbed in the right side of the base of my skull.  I honestly thought I was dying.  I couldn't move to call out to DH, and I don't mean to sound dramatic, but I had tears streaming down my face, mentally saying goodbye to my family because I just knew I was leaving this world, the pain was so intense.  It felt as though someone were repeatedly plunging a knife in an out of me back there.  I almost went to the ER on that one, but didn't because once the episode was over, I saw no point.  I have also been awakened on two occasions in the night where all of the teeth (upper and lower) on my right side were throbbing, and there was awful pain in the jaw area under my right ear.  Not wanting to solely depend on Dr. Google, but those symptoms sound like Occiptal Neuralgia.  Is Occipital Neuralgia something that can be caused by Lyme?  Or does Lyme cause similar symptoms itself?

Please forgive the long post, but I felt I should include as much information as I could.  I have a funny feeling it is going to be difficult to find out what is going on with me.  I probably should have mentioned this to my doctor before now, but for one thing, I realize people with a lot of crazy symptoms befuddle doctors, and sometimes we're told that it is "in our heads."  My PCP had told me that my neck pain was due to stress, yet when I was referred to a specialist two years later, I was immediately diagnosed after an MRI of my neck.

Anyway, to those of you who have made it this far in my post--thank you so much for reading!  Any input you can give me will be greatly appreciated.

Minnie
21 Responses
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Avatar universal
  There is two types of doctors. The ones that try to cure and the other just wants to treat the symptoms!  Anyone that prescribes steroids is not your friend. That type of doctor wants your money. They don care about you and they will give you a test called the elisa and it's about 40% accurate. You can get 50% by tossing a coin. IF you think you have lyme find a LYME doctor and have them test you. They use a special test that looks at the bands  or something like that. Also you should for cronic strep. It's bad about hiding in the sinus and tonsils. It takes a special test there too so find a lyme disease doctor and don't settle for less. BTW if you take pregnizone for 2-3 months it can cause AIDS!
Helpful - 0
255722 tn?1452546541
Mine was listed through ILADS also.  Used to be a general practitioner who thought very "CDC" about Lyme until her daughter was afflicted. I like the fact that she was a skeptic who has modified her thinking. It makes me feel like she won't go too far out there for my comfort zone but she is dedicated to helping where others close the door.
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Avatar universal
I first heard of mine through two other patients in the area.  As I researched him, I realized he was really good and very involved in CALDA, the CA Lyme association, now called lymedisease.org.  He also has a chapter in a book on Lyme treatment.  I like his philosophy of integrative medicine, combining prescription meds with supplements, and working to support and heal the body throughout treatment.  He puts most of his late stage neurological patients on IV abx or shots. Once it is deep in the CNS, oral abx just aren't sufficient.

There is another local doctor very close to me who treats Lyme.  I talked with a patient of his and she said he'll let you do your own research and then ask for particular drugs and then he'll prescribe them.  (Wha??)

He put her on doxy for 3 years and she is still sick. She did a month of Rocephin, had a bad reaction, and stopped. She told me she had just learned that doxy pushes Lyme into cyst forms, so she concluded abx don't work and she cannot be cured.  AARGH!  Her doctor is worthless.  No, worse.  She could have spent all that money on treatment that would actually cure her.  

Antibiotics work the vast majority of the time.  You just need a doctor who knows what he is doing and follows ILADS treatment protocols. There is no one specific Lyme treatment.  There are several.  A good doc will adjust according to the needs of an individual patient.
Helpful - 0
1763947 tn?1334055319
I found mine through ILADS, or you can google Lyme doctor and put in your city and state. I was lucky because I had medical professional friends that helped me. What I would say is they should use IGenX labs, especially to look for co-infections. That is really important. I also feel that a good one doesn't just follow one protocol, he/she should be willing to offer different protocols. I have heard of some insisting on IV therapy and that is it. I interviewed mine by phone before going. My co-infection caused me more problems and that is why the doc needs to check for that. Does that make sense? Having a bad herxing day, hope I am not rambling. Feel free to message me if you would like to.
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3054080 tn?1358722856
I need to rephrase my question a bit. What do you look for in a good one?

Thanks again,
Minnie
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3054080 tn?1358722856
I have put out requests for a LLMD in my general area of Middle Tennessee and the Nashville area. How do you go about finding a good one? Based on my reading so far, some of them have pretty radical approaches. I realize I need to think outside the box, yet some of the methodologies seem a little out there.

Thank you for all your replies and help,
Minnie
Helpful - 0
1763947 tn?1334055319
I was lucky to find an LLMD that is a 30 minute drive and I am very happy with her. Not all LLMD  are good either so the more you know the better.
I realize now I was bit by a tick 18 years ago and started getting sick, so yes it took me a long time to get a dx but I have medical professional friends that knew I had it 6 yrs ago, I needed to find the LLMD for treatment. I have improved a great deal since treatment. Mine is neuro Lyme, I couldn't walk, I had periods of blindness, muscle weakness so bad that I couldn't open the fridge, I still have memory loss but not as badly.lots of muscle pain.
If you have any questions let me know. Please find an LLMD !
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3054080 tn?1358722856
Hi mojo, wow, that is so scary! I have emailed in hopes of finding a LLMD at least in my general area. I am holding to the slim hope that my PMD will be receptive and help me. I have put off dealing with these symptoms long enough and now they are getting worse and quite frightening. It is sad that people have to go to the "underground" to get treatment. :(

I take it you are happy with your doctor and are doing somewhat better. Was it difficult to find a LLMD? Was it difficult to get a diagnosis?

Thank you so much for taking the time to reply!

Minnie
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Avatar universal
You're welcome!  We are all happy to share our experiences to help others in their journey through this disgnostic process(sometimes a quagmire!).  The saddest part for me is how many very sick people have been told they do not have Lyme. And how many people were given steroids, making their illness worse, and treatment longer.

Hang in there.  It seems like you are on the right track.
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1763947 tn?1334055319
I agree with all the great advice here and I always tell my story of being misdiagnosed with MS and Lupus and given steroids. I woke up in the hospital on a ventilator fighting for my life. I didn't have an LLMD at the time. A good LLMD makes all the difference.
Good luck and keep us posted.
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3054080 tn?1358722856
Thank you for directing me here! I had not considered Lyme because at the time, I thought I had been treated and the CDC doctor had said I didn't have Lyme. Now, though, I find that I am still in a predicament. I thought that if I had a documented hospitalization due to a tick bite, it would be relatively easy to get tested and possibly diagnosed, or if it were determined I didn't have it, it would be an accurate assessment. Now I am discovering it will most likely be difficult to get the tests, much less a diagnosis! I haven't had any tick bites since then. I am very diligent about applying repellent, doing thorough checks, and we spray the yard religiously. We did not want a repeat of my "allergic reaction."

I do like my PMD and we have a great relationship, so I will go ahead and tell her since I have an appointment next week. In the meantime, I will keep reading and learning all I can.

Thank you very much for taking the time to reply and help.

Minnie
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Avatar universal
Sounds like you have already gotten great info here.

Another thought as I read your post...When I was talking through symptoms with my doc's PA to see if I had Babesia, she described "ice pick headaches" as being a symptom of Babesiosis.  Lyme and other tick borne diseases are known for causing headaches and migraines, but the sharp spiky headaches usually indicate Babesia.  It is a parasite that infects red blood cells and makes Lyme worse. Often, Lyme treatment will fail if Babesia is present and untreated. It requires different meds than Lyme or Bartonella.

On deciding whether to talk to your doctor.... It is hard to predict who will be supportive and who will be dismissive until you ask and who will be willing to order tests.

Like the stock market, past performance on tests has nothing to do with future performance, IGeneX does better testing and is more likely to find Lyme and coinfections, so you can just go straight to IGeneX, or try the local lab first, knowing that negatives don't mean much.  Most people with Babesia test negative because it is just plain hard to find in the blood. A significant percentage of people with Bartonella also test false negative for it.

An LLMD will know how to make a clinical diagnosis even if tests aren't clear.  You are a good candidate for Lyme, Bartonella, and Babesia, so you will definitely need an LLMD for treatment. Few, if any non-ILADS docs know how to deal with the complexities of multiple tick borne infections, or "The Lyme Complex," as one ILADS doc calls it.

If your Pain doc is supportive, hopefully s/he will order the tests for you.  I just handed the IGeneX form to my primary doc and ssked her to sign it.  I told her it was out of network but I didn't care anymore. I was so sick, she was already telling me to go to the ER. She signed it because I was desperate and she didn't know wha t else to do for me. I am so glad I did the IGeneX testing because when I did go to the hospital, four doctors didn't believe I had Lyme.  The infectious disease doctor wouldn't even come see me because I had previously tested negative twice for Lyme. IGeneX showed I had Bartonella and Lyme, so when I saw the LLMD, I started treatment promptly.

Some people prefer the route of seeing the LLMD first, and having him/her order appropriate tests.  This could definitely save $ on unnecessary testing as they know what to look for based on symptoms.

If you would like to read a doctor's perspective of treating tick borne diseases, check out www.lymemd.blogspot.com

Also, Dr. Burrascano's diagnostic tips is a very useful document.  
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Keep us posted!
Helpful - 0
3054080 tn?1358722856
Oh, and I have BCBS of Tennessee so hopefully our plans are similar enough that they will at least cover some of the expense of the LLMD.  I also participate in our FLEX benefit plan.  Great minds think alike ;)

Minnie
Helpful - 0
3054080 tn?1358722856
What I meant was that the news media (at least around here) seems to be proactive about warning people about ticks and the diseases they carry.  I had no idea that there was a split in the medical community about the testing and diagnosis of them.

Do you all think I should mention my symptoms and previous hospitalization to my pain management doctor (I wouldn't even approach my PCP with it for all the tea in China), or go ahead and try to find a LLMD?

Thanks again for your quick responses and information.  It has been very helpful!

Minnie
Helpful - 0
255722 tn?1452546541
Insurance:

I have BCBS, and the thing is that my LLMD is a non-participating provider--it has to do with the "controversy" and the red tape placed on LLMDs by the mainstream, which, in honesty, I believe is less "mainstream" than it is just more powerful (politically).  The bottom line is this, my Dr. gives me every prescription, every itemized bill, every test form every everything so I can submit it to my BCBS company for possible reimbursement.  I have had "some" difficulty with "some" items, but mostly, the prescriptions and the like have been covered.  The one thing that BCBS says they will only cover if it comes back "POSITIVE" is the testing through iGenex.  They will acknowledge positive--but they will not pay for negative--but that's me, here in little old MD--TN may be different, who knows.

I also have a "FLEX" pay plan at work where I can put aside up to $3000 pre-tax and submit for reimbursement for any medical bills that aren't covered by insurance.  I've used that to its max this year unfortunately, but it has been worth it.

One of the hardest things to deal with is the red tape, which is why a lot of LLMDs just "don't."  Lyme is expensive, and so are all the co-infections.  It is so funny--at first, I was so skeptical of my doctor (pre meeting her) because I thought, if you don't take insurance, how do I know you aren't some quack?  But everything has been so open and honest, and I've shared a lot of my test results etc. with other doctors who have agreed with the course of treatment and testing so far--so--back to politics.

I want to add a personal observation to this thread.  I thought, when all this started, that I was traveling down some back track "hidden from sight" medical journey.  It made me feel really nervous and I didn't want to share with my primary care doctor what was up, because her partner had already dubbed me a head case and I figured what was the point in adding fuel to their fire.  But I went to the prescribed psychiatrist because I figured there was nothing really to lose, and he totally agreed that this might be Lyme and supported my choices--basically telling me that the PCP was the one with the issues in the head :-).  Then, I went to the dentist because of jaw pain, got up the nerve to share the Lyme diagnosis, and he just shrugged and said, "Yeah--that'll do it..."  And (I live on a farm) my veterinarian thinks that most human doctors are totally behind when it comes to tick born illnesses--he, and his staff have all been vaccinated against Lyme using the vaccine that is generally not approved for human use--but vets can use it because of their very high exposure rate.  

So, it has been my experience that a lot of "mainstream" doctors and medical professionals are on the ILADS side of Lyme, but the politics and the red tape force them to live on the CDC side of the room.  If it weren't for the fact that this thing has made me feel so crappy for a year, I would find it a fascinating experience!

Good luck to you--and check in later, I'm sure others will pipe in with more info for you.
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Avatar universal
I think you're on the right track, with the right frame of mind.  

I have a dear friend who has had Lyme for years and years, and I never though much of it other than Oh, Sorry To Hear That, Hope You're Feeling Better, until I got it myself.  Amazing how things in the news sound SO different when your own context changes!

I got Ehrlichiosis from a big ole dog tick in the park across the street, so strange stuff happens!  

Best to you --
Helpful - 0
3054080 tn?1358722856
Thank you very much, I will do a search and send that email.  While I may have other issues going on with my neck itself, the more I read the more I think, given the "allergic reaction to tick bite" diagnosis, I may finally be on the right track.

The weird thing is, just about every year in the Spring or early Summer, there are news stories run locally here in Nashville about tick bites, precautions to take, and what to look for.  Last year in March, News 2 ran a story about a man who reported that he had no appetite, fatigue, and had a rash where he'd been bitten,although he didn't know it was a tick bite,  He said it totally zapped his strength, and after undergoing tests, doctors determined he had contracted ehrlichiosis from a lone star tick. They always mention Lyme's, too.  I never really thought about it much, but based on news coverage around here, I never would have considered it would be so difficult to find a doctor who would test for these types of things.

Thanks again for all of your help.  All information is much appreciated! :)

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Avatar universal
Dolfnlvr has said it all -- I agree with her comments entirely.

Finding a doc who really understands Lyme (and the other diseases the same ticks bring along) is key to getting better.  We have had some other posters here from Tennessee, and it sounds like there may not be a lot of LLMDs in the state, but often they hide out to avoid controversy from so-called mainstream medicine and bashing by the state/local medical boards.

In the right hand column of this screen, there is a search box near the top that says 'search this community', and if you type in Tennessee, it will bring up all the posts that mention TN.  Then you can send a private message to any of those posters who might have some suggestions for you on local docs.  (The message function is through the 'inbox' in the upper right corner of this screen -- confusing, I know.)

Or you can just post a new message here "Need LLMD in Tennessee" or refine that to include the nearest big city, since as I recall TN is long and skinny so Memphis vs Chattanooga matters!

Also send an email to

                   contact [at] ilads [dot] org

saying where you are and they can send you names of nearby LLMDs.  ILADS is the main voluntary group for LLMDs, but their name on a list doesn't mean they are all experts ... Lyme is a challenging and developing area, and not all docs are created equal in that regard, so if the first doc doesn't work out, go to another.  Don't worry about that now, tho, just be aware down the line.

Let us know how we can help, and take care --
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3054080 tn?1358722856
I know what you mean about the Prednisone.  I have seen where Doxycycline has been prescribed for Lyme's and is most successful when Lyme's is caught early, but then I read that Prednisone is not good, and can make things worse if you have Lyme's.  Yet, I guess if the CDC doctor did not believe I had Lyme's, then I guess she would not have considered that the Prednisone could make things worse.  I got all the information I gave you about my hospital visit from my discharge paperwork.  It says that the Prednisone was given to reduce swelling and my allergic reaction (rash/hives).

Yes, the symptoms happened after the hospitalization.  I had my neck pain itself before that (but had not yet been referred to a specialist).  The other neurological stuff came later.  At first symptoms were few and far between.  It is only in the last few months (markedly since September, 2011) that it has magnified so much.

I guess I need to find a LLMD in the Nashville, TN area.  I wonder if this is something my insurance would cover?  Those of you who have been through this, has your insurance paid or were these doctors considered out of network?  I realize this varies depending on insurance, but I am curious as to to others' experiences.

Thank you so much for your prompt, informative responses!

Minnie :)
Helpful - 0
255722 tn?1452546541
oh yea--the prednisone--

Steroids suppress the immune system--and if given in the early stages of Lyme or any of the other infections, it allows the infection to take root since your immune system isn't able to put up a strong fight against it--which is what it was doing when you got the rash, swelling etc.

It likely made you feel better, but the steroids would have made the infection more able to proliferate (if indeed that is what was going on).
Helpful - 0
255722 tn?1452546541
Umm--first thing I saw was "Prednisone" and I thought--oh, geez...

You'll see, and I'm sure in a bit others will post, many accounts of Lyme disease, its controversy and all of the co-infections that are likely to occur with a tick bite--and it sounds to me like you are a prime candidate for all of it.  The "allergic reaction" to the tick bite is the FIRST clue, and I don't see it for sure in your post, but I'm assuming that most of your symptoms have come AFTER that event.  

Many MANY MANY neurological symptoms can occur as part of Lyme disease, but again, Lyme is just one of a cocktail of tick borne diseases that tend to come as a package deal.  Bartonella and Babesia are also common, as are many others.  The foggy head with loss of words, the balance problems, pain, and some of the other things can be classic Lyme.  But the thrumming in your feet and some of the other symptoms sound like classic Bartonella.  

I would be willing to place large amounts of money on a bet that you have more than one tick borne infection--and that may or may not be in conjunction with something else.  You need to see an LLMD (Lyme LIterate Med. Doctor) who will run tests through a laboratory called iGenex.  Then again, he/she may start local with basic tests first, but you'll be tested no doubt.  Your history and symptoms alone are nearly enough for a clinical diagnosis.  

I would type more, but our friends here (Jackie, Rico, Youvegottobekidding etc) are much more prolific with much of the information you are looking for at this point.  

I recently (1 year ago) started having very weird symptoms out of nowhere.  I fainted while in bed, had weird night sweats (only a week or so) and started to have horrible dizziness/tipsy feelings that would not go away.  My pupils started to be uneven in dim light and it has been a wild ride.  NO REGULAR TESTS SHOW ANYTHING WRONG, and my PCP gave me the full out referral to a shrink---*sigh*

Now, I'm on a drug called Mepron, along with abx for Lyme, and I've seen real progress in the past month or so.  Even the shrink--haha--is on my side and started prescribing me migraine preventatives as part of the regimine.  

I think you've found a good, and very informative board.  I'm sorry you need us, but now that you have, you'll have a vast amount of information in your path soon.

Take care--A
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