posted
Since my illness began in my pregnancy, it started with these weird neuro symptoms. These symptoms make it very hard to function physically. I don't understand them, my doctors don't understand them, and rarely anyone I talk to has them.
I have been with these symptoms for 20 months straight..24/7. They do not come and go, they are just a regular part of my being now and it scares me. Not once have I had a day since my last trimester of pregnancy without them. They are very hard to explain
ABX have not even touched these symptoms and I am starting to believe they are permanant. Unfortuntley these symptoms keep me bedridden and homebound.
-CONSTANT Head pressure that feels like my brain is swollen which in turn makes my body feel weird and dizzy. (VERY hard to explain)
-Constant dizziness that feels internal
-Veering off
-I feel like I am on a boat 24/7, going up and down on an elevator or getting off a treadmill.
-If I close my eyes I feel like I will surely get sucked through teh floor and topple over
-WEIRDEST yet... and most horrible... WHen I TRY to go into a store ALL these symptoms get 100% worse and I feel like I will pass out or fall into the ground. I hate it because I can;t shop, or go anywhere becuase of it.
-Walking upstairs is a no no because I feel like I am being pulled backwards... I have to take one step at a time and have someone behind me.
-MOVEMENT of any kind, which includes WALKING (which you need for everyday life) makes all these symptoms WORSE...
I have been like this everyday... This does NOT go away. It is CONSTANT way of life.. wake up and go to bed this way. The way I explaied above is the only way I can put it into words.. other than that they are way to hard to put into words or describe the feelings I have everyday of my life now.
THIS is why I am in bed for almost 2 years.. other reasons too because I have other symptoms.. but these are by far the most horrible and scary symptoms. I can't live like this anymore. I just want to be able to walk and not feel like I am rocking on a boat or going up and down on and elevator, being sucked thorugh the floor or feeling like my head is going to explode.
I am sorry this is so long, but I am strating to feel like a freak of nature. I can't do anything because of these symptoms and they do not seem to want to leave my body.
Has ANYONE gone through this??
I have read so many things here on LN, and never have I come across anyone having symptoms like this... in this intensity for a long period of time.
I have a feeling that no TBI would cause such symptoms and dont know what is causing this??
Thank you
-------------------- "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 sorry to hear that you are feeling so horrible. I too had a dizzyness that wouldn't go away, nausea, and the feeling of being seasick. Add to that a pounding in my left temple that never went away. I had the tell tell signs of rashes and streaks on my body, it helped me convince my doc that I was suffering from Bartonella or a BLO.
What helped me was treating for BLO or Bartonella. You may test negative for Bartonella, but may be effected by BLO's (Bartonella like organism). I was treated with Levaquin, but I hear some people use rifampin or cipro. I tried cipro and it did not help me, the Levaquin was like a miracle drug for me.
I'm not a doctor, so don't take my word for it, but I would see if your doctor is willing to make a clinical diagnosis based on your dizzyness.
Posts: 158 | From Santa Monica | Registered: May 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I've had this sensation.
I felt that my car was flipping over and over forwards while driving.
Seeing anything moving made me sick.
Couldn't look up or down or side to side without feeling as if I were falling.
Constant leaning feeling to the left.
Balance issues.
Head feels heavy and full.
I wish I could pin point which infection it is...
Doxy did help with these symptoms.
Babesia treatment has helped with the imbalance feeling.
I am now doing bartonella treatment.
Still have this sensation every once in a while.
Are you still pregnant?
Have you called your LLMD to talk about it?
Is your blood pressure normal?
So many possibilities....no one good answer.
I wish I could tell you more.
Sending you positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I gave birth to my daughter 18 months ago and have litterly been this way since the day I gave birth... started in 3rd trimester.
I also cannot put my head up or down or side to side, or I feel like I am falling off a cliff or soemthing.
I think what truly scares me is that I ahve been this way for almost 2 years... everyday with no break.
I was completely bedridden for 11 months after my daughter was born (needed assistance with EVERYTHING including walking). Now I am house/couch bound but can get around the house on my "better" days.
I don't know what to do???
Thank you for all of your suggestions!
-------------------- "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
Sorry you are feeling so bad, what you explained are excatly my symptoms and what made me feel like there was something wrong to begin with. I am currently being treated agressively for LD and was tested for Bart so we'll see what happens.
I hope you feel better soon!!! Sorry I don't have any answers for you.
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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Dawnee
Unregistered
posted
I have a friend who described a lot of your symptoms. Her's come and go, sometimes lasting days..but not constant for years like you. Her doctor told her she has Meniere's disease...
I'm sorry you are going through this.. I can imagine how scary it would feel. Have you seen an Otoneurologist? Dawn
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posted
I understand what this is like, it is so much worse than anyone can imagine. I am so sorry that you too are dealing with this.
Everything you describe has happened to me. For years before dx and tx I was trying to survive with these awful sx.
Even after tx was started, it took some time to improve. I also worsened during the last trimester of each pregnancy. After each child I had new symptoms - mostly neuro.
What made a difference was adding in tx for Bartonella. It has made a difference. I remember the days of not being able to put my head on a pillow b/c the pain and pressure was too much. Talk to your llmd about bart tx. It can be started with a clinical dx. Mine was, and gave me some of my life back.
wishing you some relief from your pain,
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Alv
Unregistered
posted
I had the same feeling for very long.It started since 12 years ago that would come and go.But I used to take bactrim and Diflucan .I did not know that this was covering bart and lyme.
It came with a venteage 4 years ago.AND NEVER LEFT until 15 months of treatment -chasing bart and BLO.I never chased babs or others.MY BEST combo was LEVAQUIN and MINO.But it took me 15 months to handle both .While reaching the highest dosages of 500mg levaquin and 400mg mino...I went through the pain ( was deep inside my brain ) .
I am still chasing bart though with MINO and HH capsules.The load is lower though .AND this feeling has increased only when I increase dosages that reaches deeper in the brain.
I would say -chase bart and that will get you out .
Also you can try doxy , azithr and rifampin as a starter..for a while.When no more improvement -jump on LEVAQUIN.BE aware that you wil feel more diziness when on this 2 medications...as they address it mostly .
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Angelica
Unregistered
posted
I am so sorry you are going through this.
I wonder if the horrible fluorescent lighting they have in some stores makes this worse.
I have a really hard time around fluorescent lighting.
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posted
I'm so sorry for what you are going through. It sounds like a nightmare.
Perhaps Vestibular Rehabilitation Therapy would make your symptoms more manageable?
I am sure you have explored tons of other possibilities to have ended up being diagnosed with Lyme/Co-infections in the end....But perhaps there is something in addition to Lyme going on as well.
Posts: 27 | From New York | Registered: Oct 2008
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I don't know what to do anymore, I can't live like this anymore... Nothing is working to help me get better. I just cannot live like this. 2 long years like this... I cannot do it anymore.
It is obvious to me now that this is a permanant situation... and it is one that I can no longer suffer through hoping it will go away
-------------------- "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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Obviously I am not sitting here all this time doing NOTHING.. I have done almost everything.... I am treating babs and no change... I have been through doctor after doctor, test after test.. do you think I am just sittting here crying and NOT doing anything... I am on so many meds right now it is ridiculous.
Obviously I have tried many avenues... I am nothing to my children because I am too sick to take care of them...
Yeah maybe I do need to try getting another diagnosis YET AGAIN....
Thanks!
-------------------- "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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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
On Prohealth a gal named Missizzy lived like you are living for at least a year maybe more with the same symptoms mostly bedridden and then had a spontaneous remission.
One thing she did was just allow it to be, and let her body rest. I don't know why she had a spontaneous remission. Perhaps she had a virus she finally overcame.
I would also consider mold in your home. Perhaps you can go away for a week to a hotel and see if you feel better. If you do, you might have a toxic mold in your home. It is hard to test for as sometimes it is hidden in the walls.
Finally if it is an unknown pathogen try intravenous gamma globulin. First get your subclass deficiencies tested for. If they're low insurance will cover IVIG. If not then pay out of pocket for a trial, even of 5 grams a few times. You should notice some kind of shift from IVIG. A regular doctor won't countenance that approach but a wholistic integrative physician just might allow you to try a bit and see how you do. I responded to even a single gram.
It sounds like something got into your vestibular system. Do you have reason to think you got bit by a tick in the last trimester? Did anything else happen, any other tests or anything out of the ordinary in your last trimester?
Well those are my thoughts.
Posts: 2276 | From united states | Registered: Jun 2004
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
So sorry to hear that you are having these neuro symptoms. I have had all of them at one time or another, but not everyday and not consistently as badly.
I was going to recommend seeing an neuro-opthamologist or and/or a otoneurologist.
I know someone who had similar symptoms who finally was cured of them after physical therapy prescribed by a neuro-opthamologist. Somehow, the brain had gotten a bad connection with his eyes, and all they needed was retraining to get rid of the dizziness. Perhaps your llmd can give you a referral for that?
Hope treatment brings you some relief soon. Posts: 2557 | From home | Registered: Aug 2006
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posted
OB-- No I did not get bitten by a tick in my pregnancy, but I guess what they are telling me is that I must have been harboring the lyme infection and the pregnancy let it come out. I am positive on the IgG western blot. Mold could be a problem... but I cannot afford to move right now
I have been tested for many things, especaily while pregnant and having these issues... no one could come up with anything....
Vermont-- My LLMD did prescribe that tx but I am way too sick to actually go and do it... They are trying to get me stable... which is proving to be quite tough.
It is all very frustrating and wish I could do anything to help this/
-------------------- "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
Talked to hubby who is the Lymie. He said he can relate to most of your symptoms although for him the symptoms have not been constant.
These are some of the things we thought of that might help.
Get a SPECT scan -- if this is a bloodflow issue which is what I suspect then the test should confirm that.
Hubby has recently after many months gotten to full dose of 600 mg on Rifampin -- after 4 or 5 weeks at that dose he has been herxing severely -- just when he thought he was in the clear and would only see improvement from here on out (not what I expected really, but for once he was more optimisitic than me).
Anyway, his herx symptoms are room spinning dizzyness -- the worst it has been in the entire 7 years he has been sick. He is also having more headaches, eyeball pain, and light and sound sensitivity. Also can't walk straight when the dizzyness is the worst -- leans to the right although in the past he always leaned to the left.
What I found that helped him the most and has almost made the dizzyness go away after 2 or 3 days -- increased his IV heparin from 5000 units once daily to 3 times daily. Also added back digestive enzymes (Vitalzyme 1 capsule 3 times daily on an empty stomach) -- we had run out.
You should consider testing for hypercoagulation -- cheapest test is a simple fibrinogen test. More expensive and more accurate test is the ISAC (Immune System Activation of Coagulation) panel from HEMEX lab -- cost around $400 I think but insurance should pay some on it.
Or just try enzymes -- Wobenzyme is another good one. But be sure to start slow -- maybe just one capsule daily.
The other thing that you need to do if this is brain inflammation is to take lots of antioxidants -- CoQ10, pycnogenol (pine bark extract), resveratrol, tocotrienols, Vitamin C etc. Also something like ginkgo or gotu kola to increase circulation to the brain. Also very important to take fish oil or other good fats -- flax oil or evening primrose etc.
But remember to only add one supplement at a time and to go slow while increasing doses -- a neurologist even warned hubby that supplements like CoQ10 can cause increased headaches if you really need them as they start to do their work.
A simple and relatively inexpensive test that indirectly measures brain inflammation is the bloodtest for Lipid peroxides -- the last time hubby had this test Quest or maybe it was Labcorp had the test performed at Genova Lab (a specialty lab that used to be called Great Smokies). Was much cheaper for us to have insurance process the test than for us to have the test done by an outside lab directly.
Have you had your B12 level tested or tried B12 shots or supplements? Hubby had a less severe dizzyness problem 10 or 12 years ago before tickborne illness and that resolved with B12 supplementation.
Hubby tried the vestibular rehab that someone else mentioned several years ago. Was only slightly helpful. At that time he had had very little antibiotic treatment.
As several others mentioned Bart seems to be the main culprit for these type of symptoms for hubby -- he does attribute some of the off balance type symptoms to Babesia as well.
Another possiblity -- find a really good chiropractor -- preferably a chiropractic neurologist. One of those gave hubby some exercises to do which included spinning round and round (only 3 times) in an office type chair a couple of times a day. But based on his symptoms and exam he was only supposed to spin in one direction. Maybe he needs to revisit this therapy.
There are ways to retrain the brain -- if this really is some sort of permanent problem -- the vestibular rehab hubby did involved looking at flashcards in a certain way to help improve perception.
Don't give up. Please keep asking for help and someone on here will surely be able to point you in the right direction.
So sorry you are suffering, but remember you are not alone in this battle.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Two things:
Those symptoms could have something to do with inflammation of one or more of the cranial nerves (probably due to lyme.)
Someone who is good at craniosacral therapy could check that out. Compromised cranial nerves feeding the eyes and/or the ears could contribute to such symptoms.
Also sounds like low cortisol levels. Cortisol keeps inflammation down, and keeps the immune system active (except in unusually high clinical doses of steroids.) Cortisol also keeps the blood pressure up.
The body needs an active immune system to make use of antibiotics. The antibiotics break down the pathogen, but the immune system has to finish it off.
Very low cortisol means an underactive immune system, which means antibiotics can't do their job.
Just some thoughts.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
There may still be a few things going on... you have been given a lot of good information here so far.
One thing that kept coming up for me was viruses, particularly herpes zoster. And it seemed to be correlated with head swelling more than anything else, in my case. It seemed to show up after die-offs and it took me awhile to see this pattern. Anti-viral treatment really helped. You might ask your doctor about this or other possible viruses as well, just in case it could possibly be a contributing factor. I also had to use anti-fungals periodically.
This illness requires us to pay attention to every single sensation, before, during, and after treatment. Keep a diary of what you are taking to see if you can find any patterns.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
Thank you all so much!!! I am defintely looking into the mold thing VERY carefully... I believe this IS a huge problem.
Thank you for all of your suggestions and advice, it is very much appreciated!
-------------------- "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 had the same symptoms and followed Burasscano's recommendations for neurotoxicity. I have been on Cholestrymine(sp?) for 2 weeks and it's almost all gone. Send me a private message if you like and I can tell you some things my naturopath recommended. Also, Buhler has a protocol for neurotoxity. Good luck. It's a horrible expericne I hope to never have again.
Posts: 32 | From Southcoast, MA | Registered: Dec 2008
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