I just had my first offical appointment with an LLMD
It was interesting and very hard
I havent been out of the house for a long time because I have been bedridden with severe neuro symptoms for a year now.
Well, he said that my symptoms point to lyme. Although I am still not convinced yet that I do have it.
I think it may be because I have had SO MANY different DX's that I dont know what to believe anymore.
I have to get SO much testing done, including and MRI which I am not looking forward to because I have bad claustrophobia.
BUT, he said I have hyper Reflexes, and I do I noticed when he was doing the test. He also said I was very deconditioned because I ahve been in bed for a year.
Is this common in Lyme? Does anyone else with Lyme have Hyper reflexes?
He also said from my last set of blood work that I have WAY TOO much inflammation in my body....my CRP was pretty high. Is this also normal to see in lyme??
I am really nervous, because If I dont have lyme....I really dont know what the Hell is wrong with me.
AND still no ONE can explain my horrible NEURO sympomts and it is getting QUITE FRUSTRATING.
AM I the ONLY one that has had these type of neuro symptoms or something? It is getting very scary that no one else I have talked to has had these symptoms.
Anyway, I will be getting all my testing done within the week.
I am so pooped from the 3 hour drive there and back and the sun was so hott I couldnt stand it.
Just to freshen everyone on my neuro symptoms.
Feeling of constantly being in motion
Feeling of being on a elevator 24/7
feeling of being on a roller coaster
Severe head pressure I cant put my head, down or side to side or I feel like falling
Cannot look inot a mirror without feeling like I will fall backwards, or when I close my eyes.
I am bedridden with no hope that I can get rid of these sympoms. On top of that my heart races all day and night for no apparent reason. My resting rate today was 118
I can deal with the pain I am in, but I CANNOT deal with these horrible neuro symptoms that keep me in bed 24/7 and unable to care for myself or my children
Confused me....Dont know what to do????? Dont know what to think or believe anymore.
Thanks everyone!
Be Well
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
I'm so sorry to hear you are so ill. I don't know whether your symptoms are common in Lyme or not.
I do know that Lyme can present as pretty much anything, so it's possible.
I'm sure you will receive a lot of responses from this board about your symptoms. Many of the people here have an unusual amount of knowledge about what Lyme can do.
Just to let you know, several of my symptoms are very uncommon in Lyme, yet I was diagnosed with Lyme, and am getting a little bit better with treatment. However, I am still VERY early (less than two months) into treatment so it is not surprising at all that I am only a little better.
Good luck.
Posts: 129 | From Virginia | Registered: Feb 2008
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Severe head pressure I cant put my head, down or side to side or I feel like falling
Cannot look inot a mirror without feeling like I will fall backwards, or when I close my eyes.
I am bedridden with no hope that I can get rid of these sympoms. On top of that my heart races all day and night for no apparent reason. ===============================
Sounds a lot like my babesia symptoms. I do hope this LLMD treats babesia. Would also look into bartonella just in case.....and of course Lyme usually fits in with the other two.
Keep a positive outlook and keep reading here. There are tons of people here with those symptoms.
The hyperreflexive could be connected to your thyroid. Is he going to check for that too?
OH... and the tachycardia was also part of my babesia symptoms.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
Just a quick note to tell you that I have hyperreflexes from Lyme. They can bump and jerk all over the place. They are getting better with treatment.
Congratulations on completing your first LLMD visit! I cried the entire time at mine!
What meds will you be starting on?
Happy healing, Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I also have hyper reflexes and very high CRP. I tested CDC positive for LYme through Quest.
Congrats on a great appt. I know it is a hard drive. I have to make it on Tuesday, yuck.
Get some rest!
Melissa
Posts: 3905 | From USA | Registered: May 2007
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I have been hyperreflexive my whole life, so unless that is a change for you I would not worry too much about it. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8919 | From Illinois | Registered: Aug 2004
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posted
I know your doc (he's ours too) and you are in VERY good hands. He will do right by you and get you feeling better.
The tests are very comprehensive but that's a good thing. Hang in there a little longer!
Oh and my husband (who sees your doc) has almost NO reflexes.........so how's that for ya?---go figure Posts: 554 | From Naples, Italy | Registered: Jun 2006
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So i am not odd having hyper reflexes?? He seemed concerned enough to want me to have an MRI of my spine to check for lesions
I guess that is why I am pretty freaked, if it was nothing I guess he wouldnt want to check for lesions?
I am still not completely convinced that what I have is Lyme.
The reason are:
-The way my symptoms first presented
-They are not like most peoples that I read about
-My symptoms have been the SAME since presentation, and I see that most people with lyme symptoms are in cycles
-I have an ANA, RF, HIGH CRP, At one time I had an elevated ACE (seen in sarcoidosis) which tells me I have a SERIOUS inflammatory process going on..... (I dont think lyme could cause the severity of my blood work)
-My symptoms started abruptly out of no where from the birth of my daughter and NEVER stopped.....except for maybe level of intensty, but always there.
And of course over the months OTHER symptoms were added.
Now this is not to say lyme cannot be PART of the picture, but this is definitley getting more confusing and frustrating by the day.
It all just doesnt add up OR make sense and STILL no one can really explain my horrible debilitaing neuro symptoms I ahve had since day one. Sick of being bedridden and unable to walk or function because if this.
And because I have been sick for a while, I have a chance of treatment failure anyway...I am starting to wonder...WHAT IS THE USE ANYMORE.
Never mind through all this I a son with lyme which is adding more stress and a VERY active 1 year old that I cant do anything with.
Maybe I did something seriously wrong in a past life and I am being punished.
Doc wants to start me on Doxy and take me off the MP because I have not seen much of any progress on it for the 5 months I have been on it.
I seen some initial progress on the MP, but when I started having troubel with ABX, I lost all that progress and I have not been able to get it back for the 3 months I have been trying to.....
Doc felt it was time to try something else for the time being.
I am sorry I am so Frustrated, and I know you ahve all gone throguht the frustration of no one really knowing what was wrong and going from doctor to doctor.
I have felt so alone because I felt like I was weird, everyone kept telling me that they had never seen anyone get like I did aso severely after having a baby.....Its been scary.
I am on my last string and it is pretty thin........
I ahve been up since 3am....every night no matter what I wake up at 3am and CANNOT get back to sleep...makes me crazy
Thank you for letting me vent.......I hope I dont make anyone angry....I am still only 25 years old, have 2 kids and still have much to learn about life and this is NO way to live.
As a GOOD friend just said to me yesterday...."you are barely living a 1/8 life". He's right.
Thanks so much everyone....you have all been so helpful and reading my rantings....I keep waiting for the answer and the solution.........
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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bettyg
Unregistered
posted
ill, congrats on making it thru your 1st llmd appt.
MRI ... i've hyper sensitive on everything so since this equipment is NOISY; and i can NOT STAND NOISE; i had them put me OUT COMPLETELY so i wouldn't have to contend with the noise, panic attacks, etc.
mine was quite an ordeal; murphy's law, but i survived it. wouldn't want to repeat it anytime soon.
so that was my one suggestion; if noise affects you, make arrangements that a dr. puts you COMPLETELY UNDER.
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
congrats on your LLMD visit! i truly think you are in the right place.
i am no doctor, but your illness absolutely sounds like lyme and coinfections to me. i'm not sure who is telling you your symptoms are so unusual for lyme, because they're not. i promise. chronic lyme can cause all sorts of debilitating, bizarre, kafka-like neuro symptoms. it is also famous for triggering inflammatory responses in the body, and manifesting an auto-immune-like presentation.
when i was at my sickest i was 98 percent bedbound. i couldn't think my way out of a paper bag, suffered from dementia at the age of 24, felt like i was on a constant rollercoaster ride just as you described. continuous head pressure, severe vertigo, inability to comprehend anything at all, couldn't leave the house, felt like i was dying 24/7. it was a hell i wouldn't wish on my worst enemy.
i have hyperreflexia as well and horrible tachycardia unless i take a beta blocker every day.
you're not alone. you've come to the right place. i know it's hard after everything you've been through, but please, trust your LLMD.
Heiwalov= I am sorry you have had to go thorgh that as well....It is the worst set of of symptoms.
I always say if I could just get rid of the Neuo stuff I would be able to be so much more functional even through the pain.
Lymetoo, to answer your question:
My illness presented itself in my pregnancy with severe neuo symptoms and tachycardia.
When I gave birth all hell broke loose and everything got 100% worse and I could barley walk. I was veering off to the left, body heaviness, vertigo and internal spinning 24/7.....
I still have all these and more. I have been in a constant state of dizziness/vertigo/elevator/ being on a boat feeling for over a year now and that is why I am pretty much confined to my bed. Along with the head pressure that makes my brain feel swelled and than my speech gets slurred and I lose words or can't even talk.
So those are just more neuro symptoms, than you have the pain and everything else and you got yourself a whole page of crazy unexplaied symptoms that will NOT go away!
Everyone here has been so helpful to me and I really apprecite it.
This past year has been a very trying time for my family and we need all the support we can get!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
It's not unusual AT ALL for those undergoing childbirth, surgery, or a vehicle accident to suddenly have their dormant Lyme knock them in the face.
Your symptoms, as I mentioned elsewhere, fit right in to babesia.
You probably have Lyme as well, but you need to make sure you receive treatment for babesia SOON.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I have your neuro symptoms as well. These are awful and debilitating. I have also had joint issues, gut issues, increased heart rate, but the head pressure, and feeling like I am on a roller coaster is the worst.
I am pretty much homebound, less so recently, I go out on the deck or into town but sit in the car and watch life as my SO shops...at least it is a change in scenery. I still am not able to drive.
The main point here is that I tested very positive for Lyme. This IS what is causing my symptoms (or co-infections). It is very likely that you will begin to improve w/ treatment.
If you have been laying in bed for a year w/o a diagnosis or relief, I would bet it is TBD.
Best, Feelfit Posts: 3975 | From usa | Registered: Aug 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yes, hyper-reflexia is common. Most patients don't notice it however until someone tests for it.
Bang the knee of most Lyme patients, and they could kick the doctor in the crotch with the quickness.
-------------------- 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
Hey MB that is pretty funny, it gave me a much needed laugh!
I think I did nearly kick him in the happy place...
I think once I get my blood tests back I will be more convinced that this is what I have.
I guess after going to so many different doctors and getting so many different dx's, it is really hard to beleive doctors or DX's anymore.
Thanks guys for writing in and letting me know I am not alone
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
quote:Originally posted by METALLlC BLUE: Yes, hyper-reflexia is common. Most patients don't notice it however until someone tests for it.
Bang the knee of most Lyme patients, and they could kick the doctor in the crotch with the quickness.
I did, by accident & he was singing several octives higher
In a Soprano tone, he mentioned hyper-re was a side effect of Lyme.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Before I found out I had Lyme disease I had no idea why I was hyper reflexive and since I've been diagnosed I hadn't thought about it until I saw this post.
The first time it happened I nearly kicked my doc right in his man parts and he jumped back and almost stumbled.
When he checked the next knee he stood to the side and watched in amazement as my leg shot out like a rocket.
Maybe we could use this as an excuse to kick docs that are mean to us. Just kidding.
Its nice for once to talk about a symptom that is kind of funny.
posted
I have hyper reflex of my knees. I didn't notice it till my dr tested. He sent me back to the nero. the nero said it was "ok" as long as I didn't have any other abnormal findings with other reflexes.
One of my last symptoms that told me something was going on (prior to my Lyme dx) was motion sickness. I remember getting off a boat and feeling like I was still on it and getting home after a long car ride and feeling like I was still in the car.
I am doing a TON better now and for me it has only been 4 months of abx.
There is hope if you do have Lyme.
Tonight I hung out with friends for the first time in a long time and was able to follow conversations, tell old stories and just be more like the old me. It was great. It is also something you don't notice till you realize you lost it, ya know?
posted
My reflexes are very hyper.
Posts: 339 | From nowhere | Registered: May 2007
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WildCondor
Unregistered
posted
Hi there,
Glad you finally saw an LLMD. Hyper reflexes is extremely common. You just need magnesium. An MRI is not a big deal at all, take a xanax before had, it will be over before you know it.
CRP elevation is also very common and indiates and infectious inflammatory process (Lyme)
Your LLMD just diagnosed you with Lyme, so it sounds like you are in denial that you finally have a correct diagnosis. Do the tests your LLMD suggested and proceed aggressively from there with your treatment. Lyme causes all these neuro symptoms, and they are very common. The symptoms you describes in your posts are not uncommon at all and many of us have had them and currently have them, you are not alone in this. The vertigo/spinning/off balance feeling sounds exactly like Babesia.
You sound like you have co-infections and probably neuro-cardiac involvement such as Neurally Mediated Hypotension (NMH)
Everything you are describing is very common and also very treatable! Go for all your testing and your follow up appointment and you will be well on your way to treatment and recovery! You are on the right path now and that is a very good thing!
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quote:Originally posted by WildCondor: Your LLMD just diagnosed you with Lyme, so it sounds like you are in denial that you finally have a correct diagnosis.
Do the tests your LLMD suggested and proceed aggressively from there with your treatment.
Lyme causes all these neuro symptoms, and they are very common.
The symptoms you describes in your posts are not uncommon at all and many of us have had them and currently have them, you are not alone in this.
The vertigo/spinning/off balance feeling sounds exactly like Babesia.
You sound like you have co-infections and probably neuro-cardiac involvement such as Neurally Mediated Hypotension (NMH)
Everything you are describing is very common and also very treatable!
Go for all your testing and your follow up appointment and you will be well on your way to treatment and recovery!
You are on the right path now and that is a very good thing!
Ditto to what Wild Condor said! She has been around the block as many times as I have!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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I know I am ill, but being given so many different diagnosis, it makes it hard to know what to believe anymore.
I think until I see it on my WB or through the other blood tests, I probably will still be in denial, and maybe even after I see it.
I have so much trauma because of this, being diagnosed with every autoimmune illness to exisist and being told there is NO cure for me.
having all these horrible symptoms and being bedridden with a new baby and now my son being sick with lyme....It is like living in a nightmare that wont stop.
Still worrying everyday if it is possible that I have sarcoidosis like they said because I had an elevated ACE level, or any other illness I was diganosed as having.
wondering if I will ever feel better, or get better, wondering if my fear and negativity are making my future worse, wondering if me thinking I am dying all the time or saying I am all the time will actually make it come to fruition.
Man this just blows!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Most of us have been there Shandy. You're going to be ok.
-------------------- 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
I just wanted to tell you to play close attention to how you react inside the MRI. My head felt like it was going to explode during a SPECT scan, and I have severe electromagnetic hypersensitivities.
They are now checking me for a pheochromocytoma - I test positive for Lyme and babs, but I know bartonella is part of the mix, too.
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WildCondor
Unregistered
posted
It's ok, denial is part of the process of being sent on a wild goose chase by all your previous doctors. We've all been there, and you are NOT ALONE.
Remember that the Western Blot does not really mean squat. Lyme disease is a CLINICAL DIAGNOSIS. You saw one of the nation's top LLMD's so you should have asked all your questions then, and do so at your follow up appointment after you do all the tests.
Yes, you can get better, of course you can. Once you get on aggressive treatment for Lyme and co-infections you will be on the right path. One of the most important things to know is that Lyme disease is a clinical diagnosis (based on symptoms). Negative lab tests mean nothing with Lyme Disease, although a positive Lyme test can help you get your insurance company to pay for long term treatment. Any doctor who tells you that you don't have Lyme Disease because your ELISA,Western Blot etc. was negative is an idiot and you need to get out of there.
Depending on how sick you are and how long you have gone untreated, you need to prepare yourself for the long haul. What I mean is, Lyme Disease, and treatment for it and tick borne co-infections will zap your strength, wipe you out, invade your life, ruin your schedules and routines, and truly test what you are made of emotionally, physically and mentally. Be prepared for things to get worse before they get better. Lyme Disease will know doubt change your life, but you will come out of it stronger and wiser if you fight like hell and never let Lyme win. Your attitude has to be tough, you cannot give up, and you have got to look out for yourself. Please do not act like a helpless victim and expect the doctors and nurses and loved ones to always help you. You have to save yourself, and its going to take allot of heart and soul. You can do it, just remember that giving up is not an option.
Remember you have so much to live for! your family, your new baby, your life and your health! Accept the fact that you can get better, but you are going to have to put up a hell of a fight to do it! You must become WARRIOR!!!!!
We are all here to help you...support is something you will have plenty of. Find the fighting tiger within yourself, arm yourself with information...and fight to get well. You will love yourself 1000X more afterwards and you will learn so much and be so much stronger!
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posted
My reflexes on my left side were desccribed as very 'brisk' - cracked me up - that's one way of describing it! This was one of the first symptoms to disappear with treatment.
For the rest, sounds much like many symptoms I experienced. I was bedridden for 4 1/2 months, sick about 9 mos with no dx before that. Even with the severity of my illness, I got RAPID, AMAZING improvement to about 50% within 6 - 8 weeks of abx treatment. Rest of the road has been much slower, but - it was astounding to me how sick I could be & then how much improved how quickly with proper treatment. I was able to get out of bed and start living again.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Please don't be scared of the MRI. I thought it was no big deal at all. It's just noisy. I know that can be a big deal w/sound sensitivity but that would be the only issue I could think of.
Posts: 2541 | From Northeast | Registered: Jan 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm sorry you are so sick.
I got really sick when I was pregnant with my only child and didn't pull out of it until I had to go on antibiotics for pneumonia. I had a 5 year remission at that time.
Excess ammonia can cause hyperactive reflexes.
Ammonia can be a problem in lyme. There have been posts here about this so you could do a search at lymenet for ammonia.
I'm watching a CD by Dr. Amy Yasko about genetic problems in the methylation cycle. People who have these problems can have many difficulties. Add lyme on top of that or other infections and you have someone who is very sick.
Here are my notes from her CD about symptoms of excess ammonia.
Ammonia Toxicity symptoms Brain fog Flapping tremors of extended arms Hyperactive reflexes Activation of N-methyl-Dpartate receptors leading to glutamate excitotoxicity Tremor of hands Paranoia, panc attacks Memory loss Hyperventilation caused by respiratory alkalosis of high ammonia levels that stimulate the respiratory center, respiratory alkalosis is often associated with decreased CO2
My doctor has told me to take Yucca to decrease ammonia.
Before taking anything, please check with your own doctor.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Just sawa my LLMD and I also have hyperactive reflexes in legs. He was checking my other reflexes and checked my eyes for MS. He told me last time to see an Eye Doc and I did but all is well there.
I was worried as well, but it seems from all the respnoses here that it is common specially with NeuroLyme.
I also have high Amonia so that pretty much explains it!
I am doing a detox that has been great for the Neuro Symptoms, it's calle "PEKANA Detoxification and Drainage Kit". It's 3 Homeopatic liquids for the Liver, Lymph and Kidneys. Worked really well to lower my palps and racing heart.
Give that a try and also there is something called "Neuro Antitox II" by Dr. Jerginson I think which I'm getting to take care of the Amonia issue.
Anyways, good luck and keep us posted. Chootik
Posts: 247 | From Ca | Registered: Feb 2007
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posted
I've been hyperreflexive for a long time...
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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