posted
I just found this website/board and I am in desperate need of some opinions and help with a diagnosis
I am seeing a bunch of doctors but no one can pinpoint what exactly is going on.
This will be long but please read and bare with me.
Jan 24 I woke up and couldn't move. DH helped me out of bed and him touching my body felt like i was covered in blisters and was extremely painful so much that i fell to the floor.
He helped me up as i was beyond weak and could barely move any part of my body and rushed me to the ER.
there my b/p dropped to 60/30 and i was in and out of consciousness.
My CPK (heart muscle levels) were 60,000 instead of the normal 200 which meant my muscles were deteriorating at a rapid pace.
i was put on antibiotics, o2, prednisone, IV fluids and pain meds. They did a million tests including CT and MRI of my head (for the abnormal weakness/partial paralysis.
NO MS was seen, an MRI of my thigh to look for lesions (negative)
pulmonary testing for embolisms (normal/negative), and after a bunch of blood tests (all normal) and 7 days they felt i had rhabdomyolysis (muscle deterioration) and discharged me.
When i was d/c i was partially paralyzed and weak in my legs, arms, had gained 40 lbs from all the fluid.
Had pneumonia from all the fluid, and was very fatigued. The doctors hoped this was just a fluke thing.
Over the next 4-5 weeks my fatigue got better and i started to feel more like myself, just weaker than i was before.
10 wks later on April 7 the EXACT same thing happened!
I was fine going to sleep and woke up and this time it was much worse. I called my DH and he rushed home to take me to the ER
Upon arrival again my B/p dropped and i was unconscious. I dont remember much about this stay. They again hooked me up to abx, o2, fluid, pain meds and started tests.
They repeated the same tests as before and nothing had changed.
I continued to worsen this time as it affected my brain too (i couldnt as much as articulate a sentence) and on night 2 i was admitted to the ICU with a central arterial line into my heart placed as well as an arterial line in my neck to monitor my b/p internally (which blew and they placed in my left arm).
I was here 18 hrs and then taken back to the floor. I was pretty out of it still and ran in and out of consciousness.
They did a muscle biopsy on my right thigh (which im still healing from) which was neg. Again everything looked "normal" I was d/c on day 7 and again it took 4-5 weeks to fully start to recover.
Now i feel ok but im nervous every night that the next day this will happen. They told DH both times i wouldnt make it out of the hospital.
Im afraid a 3rd episode will kill me. Anyone have anything like this? Lyme disease was suggested by DH and my friend who is a pediatrician and i go tomorrow for the bloodwork (not sure what they are ordering) but other than that there are NO LEADS by any dr i am seeing.
Im hoping by some small chance of fate someone will read this and can relate and help me find a way to live and not in fear.
Posts: 9 | From Utah | Registered: May 2011
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posted
I'm very sorry to hear that you are so ill. I would have them run every infectious disease test they can think of.
If you get a Lyme test done, the best is through Igenex Lab. www.igenex.com Test #188 and 189 would be a good idea.
Just in case it is an infectious disease... it's good to know that prednisone is contradindicated.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
There is something called Tick Paralysis...it is an infection. This may be what you have, but I don't know much about it.
I don't understand why they would repeat the same tests if they turned out negative the first time around? You'd think they'd try something different.... Sigh...
Could also be Lyme and/or coinfections. Also might be something called Neurally Mediated Hypotension (NMH)...and that can be caused by Lyme/coinfections...
Have you consulted with a Neurologist? If so, what did they say?
Did they test the muscle biopsy for mitochondrial disorders? (I hope so)
Ok, on the steroids. Yes, generally they are a bad idea for those with any infection. However, if the benefits (life-saving benefits) are more important in the immediate term, and there is nothing else that does what is needed, then it is reasonable to use them (hopefully judiciously). Example: anaphylactic shock. It can be deadly if epinephrine and steroids are not used.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Is there anything why they look at the thigh? Skin rash, vibrating,visible lesions, redness?
Posts: 1834 | From US | Registered: Oct 2008
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Tremors or unexplained shaking Burning or stabbing sensations in the body Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis Pressure in the head Numbness in body, tingling, pinpricks Poor balance, dizziness, difficulty walking Increased motion sickness Lightheadedness, wooziness
posted
@Razzle- i am seeing a neuromuscular doctor (she is a neurologist) and she has no ideas but she feels the lyme is highly unlikely but i have a gut feeling with all ive read to look into it further!
i think they did a bunch of the same tests so see if anything had changed since they didnt know why the rhabdomyolysis was happening again (that is the underlying condition but its a short term thing).
They did the pred because they didnt know what else to do and did test the biopsy for mito disorders.
@karenl- they looked at my thigh for mitochondrial disorders and to see if there are lesions on my muscle tissue. there are NO rashes, etc.
@Lymetoo and @lululymemom- i will look into your links.
I also posted on the doctor page to find a LLMD in utah (salt lake city area) but no one has responded.
Posts: 9 | From Utah | Registered: May 2011
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posted
@lymetoo- i just looked up the lyme paralysis and i had an EMG and it was completely normal so im guessing its not that...
Posts: 9 | From Utah | Registered: May 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
CPK is not specific to heart muscles. It is an indicator of damage to muscles in general in the body, which may or may not include the heart.
I'm no expert but here are some things which may be worth looking to.
HUMAN GRANULOCYTOTROPIC ANAPLASMOSIS (HGA)
After an incubation period of 1-2 weeks, HGA presents as an acute febrile illness with headache, myalgias, arthralgias, and malaise. Nausea, vomiting, stiff neck, and confusion may occur. There is no characteristic rash, although EM can be seen in cases of coinfection. In severe cases, respiratory failure, septic shock, renal failure, and rhabdomyolysis can occur. Meningoencephalitis resulting in coma can occur as the illness advances. Late stages are characterized by complicating opportunistic infections..........
What were your electrolytes when first drawn in the ER? Did you have low electrolytes? Being low on those can cause rhabdo as well as having a sodium level that is too high. Of course, you would still need to get to the bottom of what was causing them to be low in first place. Lyme is a possibility.
Could be anyone of numerous types of infections causing this....bacterial, viral, fungal etc.
Can you think of any commonality prior to having these episodes? Maybe there is something triggering it? Idk. Good luck in finding out what is causing this.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
@philly78 thank you for more suggestions! ill take ALL i can get
A few things after doing some research on the given links and browsing this board that are probably good to mention are:
I do have depression/anxiety/panic attacks and have since I was around 20. I was in a bad relationship and thought that was it but it got worse, WAY worse and i got postpartum depression after my baby 2 yrs ago.
im in a great relationship and should be happy, yet still have horrible depression. When i was in the hospital both times my kidneys failed to the point of possibly starting dialysis. Sorry if TMI but i peed brown for weeks.
I was extremely dehydrated upon arrival yet drink a LOT of liquids a day. my liquid intake had increased a lot before my 2nd admission b/c we...DH and I... felt it may be part of the issue.
Yes we are grasping at straws! Im only 28 and my daughter is 2 and for the doctors to tell DH i most likely will die both times is scary and enough to shake you to your core!
My CPK 2 days after release from my first admission was 200.
I am lucky with my insurance and it lists all my labs/radiology/etc on its website so i have access to everything done. I will post some of the results so if anyone can distinguish any of them as an issue. Exception: i was on a diff ins in jan so i dont have those results.
oh and might i add i have been a medical assistant for almost 11 years so i am well versed in the medical field so anyone can use medical jargon or abbreviations with me
Here are my labs that have been done so far. again it is a lot of info!
Acylcarnitine Quantitation, Plasma all within normal range
PARANEOPLASTIC AUTOANTIBODY normal
Muscle biopsy normal
CK 1/24/11 60,000 04/20/2011 54
04/12/2011 123 04/11/2011 145
04/09/2011 750 04/09/2011 888
04/08/2011 1549 04/08/2011 2865
Creatinine 1.45 high normal .52-.99
AST 496 high normal 16-50
ALT 452 high normal 9-52 CO2 35 high normal 19-30
Neut, Abs 11 high normal 1.8-8.6 WBC 14 high normal 3.6-10.6
Glucose normal CRP normal Sed rate normal
C.Diff negative HIV negative
Lactic Acid 6.2 high normal.7-2.1 Hemoglobin A1c 111 high normal <5.7
PPD skin test negative
I had some other tests done but these seemed like the most appropriate ones to list.
I also did not go today to get my blood drawn as im going to call the office tomorrow..they are out today...and ask for the IgG and IgM and western blot as well to be drawn.
I cannot think of anything similar that happened before both episodes except that i was stressed.
When i went the first time it was the morning of my daughter and I's birthday party...we share a birthday...and i had been working on it all week and had found out my mom had breast cancer that same week.
I was also trying to get ready to go to hawaii for my MIL's 60th birthday and grandmas 91st bday. Ive only flown 2 other times before that and never with my child so i was very stressed to say the least.
The 2nd admission i was stressed as well b/c my aunt in AZ has stage 4 breast cancer and i was planning on going down the following weekend for a fundraiser in her name with only my daughter and driving 12 hrs to get there. So again i was stressed. BUT i am a stress case usually lol. thats not really "new" as DH says!
Both times i went to sleep feeling normal and woke up to this. And actually the 2nd time...again sorry if TMI...i lost control of my bowels completely as well as my right cheek was drooping some..most likely a bells palsy caused by the rhabdo inf..which makes me think its neurological issue as well.
Posts: 9 | From Utah | Registered: May 2011
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posted
oh and i forgot to add i have had severe knee pain and swelling for many many years...probably started around the time my depression did.
So almost 10 years ago. I have seen dr after dr about this and they treat it as its acute and send me on my way.
And for the past 4 years i have had undiagnosed back pain with swelling at the top and bottom of my spine that comes and goes. Again, drs treat it as an acute injury..even though there was no injury...and send me on my way.
I have had unexplained pneumonia 5 times in the past year so far..a sign of possible tularemia?
My short term memory is horrible and i cannot recall even important events that happened years and months ago. I have dizzy/lightheaded spells for 2 yrs that get worse every 6 weeks or so and then go away, come back, go away, etc.
I have chronic fatigue and cannot sleep. I had a sleep study done last nov and they said i didnt have sleep apnea but instead low lung volume that does not allow me to ever enter REM sleep.
Posts: 9 | From Utah | Registered: May 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Bell's Palsy IS Lyme until proven otherwise.
Post-partum depression can be brought on by the huge drop in Progesterone after giving birth. A bio-identical progesterone sublingual or topical product may be very helpful. It is also very good for nerve issues.
From looking at your labs, I'd say you have some liver & kidney issues, as well as blood sugar control issues. This could all be glandular, or may be something else. I agree with the possibility of Ehrlichia/Anaplasma in addition to Lyme.
Glad you are getting tested for Lyme. An LLMD may actually be able to help figure out what all is going on for you and I strongly recommend seeing on as soon as possible.
I have had some really strange, unexplained nerve issues as well:
Sudden gait ataxia for 24 hours, slowly resolved over the next couple days. I also felt like I was controlling someone else's legs when attempting to walk. Really strange experience.
Uncontrollable shaking (similar to parkinsonism) of my entire body (limbs, trunk) for 10 days. Got worse if I relaxed, better if I used the muscles of the affected limb or my trunk (back or stomach muscles). It stopped as suddenly & mysteriously as it started.
When I went in for an EEG (due to the above experiences), the pain in my head during the entire duration of the test was severe. I also was given a take-home mini-EEG for a sleep study and had the same intense pain in my head. Nobody has been able to explain why this happens to me with EEG machines...really odd!!!
So I sympathize with your situation and I hope someone is finally able to put all the pieces of the puzzle together for you.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Hi, I am so sorry to hear that you are so ill and can't figure out what is causing the problems.
You mentioned getting a Lyme test tomorrow.
More than likely it will be negative, which doesn't mean squat! If it is positive, then it's Lyme for sure, and a rarity getting a positive from a regular lab.
Hopefully you can find a doc (try a naturopath) if nobody can find you an LLMD in TN who will test through IGenix. The Lyme test is $200, and you have to pay out of pocket. My insurance did reimburse me 90% after I submitted the bill.
IGenix has THE state of the art lab for tick born illness testing.
Check out the following websites and they can explain the testing issue better than I can in a post.
Good luck and best wishes for a true diagnosis and a quick path to wellness.
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
The high lactate level is highly suggestive of sepsis. My guess is it some type of infection causing all of this.
The sepsis would explain the low blood pressure, and the high WBC and if you had an abnormally low or high temp.
Severe dehydration can cause acute renal failure and would explain the high creatinine level.
Dehydration doesn't have to be caused by not drinking enough water. It can be caused by loss of electrolytes as well....most notably sodium which btw, can also cause seizures. Since you said you lost control of your bowels, I wonder if it is possible you had a seizure? Just thinking out loud here.
Many people with lyme get bells palsy. As already stated Bells palsy IS lyme until proven otherwise.
And now that you have mentioned some other symptoms, I strongly second the suggestion of seeing an LLMD.
Most of my symptoms have been neuro in nature. I had expressive aphagia, dysphagia, numbness and tingling on the right side of my body only and my leg would fall asleep seemingly out of nowhere. Sometimes this would happen when I was walking! Very odd.
I only recently (within the last year) developed intense anxiety and panic attacks which I eventually found out is related to the lyme. I had had some anxiety issues prior, but nothing like what happened this past year. It was unbearable!
I also get low back pain, worse on the right that I now notice has a pattern. I only realized this after I started tracking my symptoms. I also get neck pain, migrating myalgia, burning sensations throughout my body and weakness. I also get the dizzy/lightheadedness, vertigo, ringing in ears....and maybe even a few things I haven't mentioned!
I had my lyme test done through Quest. I had never even considered lyme but my PCP decided to send one because it had been 2 years that I was having all these vague, seemingly unrelated symptoms. When I went in to follow up on the lab work he told me I didn't have lyme.
But I did some research on my own. Quest has this app called Gazelle and you can get your blood work sent to your phone or ipod (if it is an iphone or ipod touch) at the same time they release it to the docs office.
When I looked at my results, I noticed that I was positive for band 23 in both IGM and IGG. I started to research it online, found this site and read up on the explanation of the Western Blot. I found out that band 23 is pretty lyme specific and found myself an LLMD.
I have only been treating for roughly 6 weeks but I have already improved slightly. I credit that to the supplements I'm taking. I found out my B12, Vitamin D levels and Magnesium levels were almost nonexistent and contributing to some of the symptoms I was having.
Here is a link to an explanation of the Western Blot. I must say, that I too am losing faith in the medical community and I'm part of it! Doctors do not treat the person...they treat pathology. And if you have a problem with pathology...say diabetes or heart disease they will treat symptoms related to that. But it seems like they just cannot be bothered with those who require more work or investigation into what may be causing the problems.
Anyway, here is a link to the Western Blot explanation.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93. This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands. Betina Wilska, M.D. from Germany is one of the world's experts on outer surface protein A (31 kDa).
Good luck on your journey in getting to the bottom of this!
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
i did find an LLMD and i will be seeing her next wed! i went to get my blood drawn and asked the tech to read off what they were testing me for...non of which was for lyme!
my dr's MA sent over the wrong lab request form and if i didnt check and ask i would have been tested for what i was back on 4/20 and would have been told everything was fine and would have been none the wiser.
I didnt get anything drawn and went home and called the office to have them order the correct test after getting the procedure test code from the lab.
Speaking of my labs...I do have chronic kidney stones and UTI's so that may explain some of the levels. my glucose was high after being on lactaited ringers for days.
And the liver issues, well my PCP has been testing them for the past 6mo or so and doesnt know why they are elevated.
If the LLMD cant help me with lyme or doesnt think its lyme she is a homeopath so im hoping she may have some advice on ways to help me anyway.
i am so thankful to have found this group and learn all i have in such a short period of time!
Posts: 9 | From Utah | Registered: May 2011
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