I am a 33 year old woman who is in desperate need for answers. The week of September 11th, I started experiencing vertigo.
I went to an ENT Specialist who gave me an audiology test which said I had slight hearing loss in my left ear. I also am experiencing tinnitus in my left ear as well.
He prescribed Prednisone which I took for a week, but suddenly stopped it because of the way it was making me feel. I now know that I was supposed to taper off of it slowly which I did not do.
I told the ENT Specialist this and suggested I get a steroid ear injection in my left ear which I did with no relief. I also did an MRI and CT Scan which I was told came back normal. I am now scheduled for an ECOG(Electrocochleography), VNG, and ENG(Electronystagmography).
I have also seen a Chiropractic Neurologist/Functional Neurologist who has said I have Dysautonomia/Autonomic Disregulation and Functional Disconnect Syndrome.He has a Treatment Plan for me which I am in the process of working with him on.
He has also mentioned that I have early signs of hypoglycemia, liver dysfunction, and thyroid dysfunction. I believe it because I am having pain on the right side of my stomach and it is getting hard to swallow and I feel structural changes and lumps in my throat/jaw area.
I also feel tingling in my feet at times and believe I have Peripheral Neuropathy. I have also lost a ton of weight.
I believe my body is completely breaking down on me and I may have an autoimmune disease. I also wanted to know if it is possible that I may have Anoxic Brain Damage as I have smoked marijuana in the past(could have been synthetic).
I wanted to test to see if there is sufficient oxygen and blood getting to my brain and also an EEG done. The problem is outside of my chiropractor; my PCP and a regular neurologist I went to said it was all in my head and are taking a lackluster approach to my health.
Most of my family members are taking the same approach. My back and knees hurt and so do my muscles. Are these common symptoms with Lyme Disease or some other autoimmune illness?
I was wondering if Hyperbaric Oxygen Therapy would help me for inflammation,oxygen, and circulation of blood to my brain and body.
Or, the product CellFood would help me as well? Or, given all of these symptoms, I should get my "affairs" in order?
I am beyond scared and would appreciate any information that anyone could give me. Thank You
posted
Hi, The feeling of falling apart sounds familiar to me and I am sure many others on this forum. If you have seen a PCP and a neurologist, then at least you have ruled out some emergency/acute, immediate illnesses. You have started taking steps toward a diagnosis, which is what you need.
If you suspect Lyme disease, then you will need to see an lyme literate physician, so please find a name through the seeking medical doctors forum. Make an appointment. Get a diagnosis.
I am sorry you are so scared. I have been there.
Do not give up seeking a correct diagnosis. I am sure others on this forum will also give you good advice.
Best wishes
Posts: 172 | From ohio | Registered: Feb 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, if you want to explore the possibility of lyme disease, the best document on the subject is the following:
See pages 9-10 for a list of lyme symptoms. Not everyone has every symptom.
See also pages 26-7 for lists of symptoms of the other infections a tick bite gives.
As it says on page 12, if there is any chance that you have lyme disease, do NOT take any steroids or immune suppressing drugs. That includes your prednisone. These drugs let the lyme spread like wildfire throughout your body.
If it is lyme, this document tells you how to treat it--high dose combinations of antibiotics.
Lyme will also cause muscle and joint pain, abnormalities in the endocrine glands, and many other things such as neuropathy, weight loss, etc.
To be taken seriously, you have to go to a doctor who specializes in lyme disease. We were all treated as mental patients until we got to a lyme specialist.
See Support Groups on the left side of the page. Contact the ones near you to get names of good lyme doctors.
You can also post in the Seeking a Doctor section of LymeNet.
Good for you for finding LymeNet and thinking of lyme disease. 99% of all doctors will NOT think of lyme disease. Sad but true.
We will help you here all we can.
Just know that the lyme tests are not that accurate. So, if you get tested for lyme and are told that the test is negative, do not accept that as a final answer. Many get negative tests but have lyme. A good lyme doctor knows this and treats the patient based on symptoms.
See page 7 where Burrascano says:
"DIAGNOSTIC HINTS Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms."
As Burrascano goes on to say, the patient should be given a course of lyme treatment to see how they react. That is how lyme is correctly diagnosed.
Regarding dying, lyme generally will not kill you. It just makes you suffer and suffer. So, even though you may think you are going to die, you most likely won't.
Lyme also causes great anxiety, so you are probably suffering lyme anxiety on top of everything else. This can be one of the worst symptoms of this horrendous disease.
So, get yourself to a great lyme doctor asap and start getting some help and answers. Wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Vertigo comes with lyme. Lyme literate MDs (LLMD) recognize the connection, no one else. I was hospitalized for my vertigo, and continued to have it for 3 months solid. Couldn't go anywhere without help, and barely make it to the mail box on good days.
I had physical therapy when I could make it (had to be driven, and hubby had to drive slow). I wouldn't do the ECOG if I were you (can make it worse). Of all the things I tried at that time, acupuncture helped me the most. My vertigo lifted quicker after it. Physical therapy helped (they teach you some things you can and should do as well), but acupuncture took care of it for me after that.
Not sure if you've read much on lyme but many co infections come from one bite. Most people never knew they were bit. Also, steriods are the worst thing a lyme patient can take. Good for you for following your gut and stopping them.
ALL of your symptoms are common with lyme patients. The problem is non lyme docs don't know this. Docs think they know about lyme but they don't due to a flawed blood test and more. Even infections disease docs think they are lyme literate, but they are not, they follow an old model. You must be seen by an LLMD.
You can go here to SEEKING A DR, and people will post recommendations. You can also go to www.lymediseaseassociaton.org and they will send you some names. It's important to find an ILADS doc (International Lyme and Associated Diseases Society). They are the best. I would bounce any names you get from them under SEEKING A DR too, as referral from another lyme patient is best.
You don't need to get your affairs in order. The best thing you can do for yourself is recognize that you have lyme, and you will know more after you see a good LLMD. When you call to make an apt, be sure to ask to get on their cancellation list. I was able to be seen in 3 days doing this.
The correct diagnosis for lyme is a clinical one (symptoms) from an LLMD, and a blood test from Igenex can help confirm it. That said, lyme patients can see it in others with their symptoms (it takes one to know one sort of thing).
There is a good book you can read: Cure Unknown (Weintraub). It will help explain some things. Also: Healing Lyme (Buhner).
It's good you found Lymenet. You're in the right spot at the right time. Welcome!
P.S. Most lyme patients have a hard time reading single spacing, so we need to double space a lot, or people will pass single spacing posts by (hard on the eyes).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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