posted
I was diagnosed with Lyme approx. 3 weeeks ago by my PCP, who specializes in Infectious Disease.
I will try to make a long story short. I was visiting relatives in Ky in late July 2010; don't remember getting bit by a tick but did get chigger bites (as I usually do every year). I was definately exposed to any ticks and it is the highest deer populated county in the state.
I came back home to Ohio after getting a "bomb shell" dropped on me by my daughter. I had 2 very stressfull events upon arriving home.
I went back to work and started feeling like I had a sinus infection, constant histamine drainage into my nose and alot of post nasal drip.
This went on for a few weeks and then I noticed that my hearing was declining. I had a hearing test which revealed hearing loss in both ears.
I went to an ENT, saw a NP who treated for a sinus infection. I later went to EmergiCare with severe sinus condition and was again treated with antibiotics for sinus infection.
A few weeks go by, the sinus infection is persistent, and the hearing in my left ear really takes a dive.
I go back to the same ENT who has me take another hearing test which showed severe hearing loss to left ear, moderate to severe to the right.
He diagnosed me with Meniers Disease and wanted me to take a series of Steriord injections into the left ear. I agree and get the first injection on a friday.
The following week, another hearing test which revealed some improvement, and I agreed to another injection. He also prescribed me a water pill and put me on a low sodium diet.
I felt pretty good for 4 days and then experienced the worst flu like symptoms that I have ever experienced. I stopped taking the water pill.
I go back to the same ENT in 2 weeks and get another hearing test (revealed that my hearing declined in the left ear). I received another injection.
My hearing appeared to decline even more and I go back to the ENT in a couple weeks and receive another injection. He also put me on prednisone which did not seem to help.
I go to another ENT and he just fluffed me off and treated me for allergies. I was previously tested for allergies (not food) with the first ENT and only tested slightly positive for dust mites.
I then go to another ENT (Neuro-Otologist) at a well known hospital. He thought that it could be viral and prescribed me an anti-viral for 10 days. No improvement.
He also had me tested for various things which included Lyme. All came back negative.
I go back to the Neuro Doc and he was pretty short with me. I asked him if it was possible for the Lyme test to be a false negative; took the test while taking prednison.
I also told him the symptems that I had (chronic sinus problems, body twitches, feeling of tremors, weight loss, knee joint stiffness and pain, depression, anxiety, and a list of many more.
He didn't want to hear it, just told me "you don't have Lyme and you can just wipe that option off your plate". I was told to come back if I went totaly deaf in the right ear.
I then have an appt with my PCP and told him of the negative Lyme test. He said that the tests are not accurate and that he uses a clinical diagnoses for Lyme. He didn't hesitate to start me on Doxy (100mg twice a day)
So here I am on my 4th week of Doxy and never felt worse. I hope that I am herxing. I have become excerise intolerant and symptoms become worse when i take a bath. I still get the twitches, a feeling of bugs crawling on my leg, severe tinnitis (to include organ type music), knee pain which is worse on some days, plugged ears, ears at times feel like they are ready to pop out of my head)
It seems like the symptoms vary from day to day, but never have a good day at all. I have also noticed some tingling and numbness in my fingers and feet. The tinitus and head pressure bothers me the worse. Also sensitive to to sound.
This is absolutely crazy! I am pretty much on the verge of going nuts with the tinnitus and ears!
I was tempted to stop taking the doxy but I keep taking it with hopes that it is working.
I joined this sight because the wonderful people here seem to have more knowledge than many doctors and are willing to share their knowledge with others.
I know that some of my friends think that I am just going crazy. I guess they are right, who wouldn't go nuts waking up every day feeling the way I do...
Anyhow, I would appreciate any advise and moral support. Do you think that it is a good possibility that I do have Lyme and that I should keep taking the Doxy?
Also, I didn't think that the previous treatments of prednisone and the water helped me with Lyme at all.
Thank you all in advance for any advise.
I pray everyday for all of you!!
Posts: 21 | From ohio | Registered: Jan 2011
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posted
Prednisone and steroid shots are what made you worse.. in my opinion. They are contraindicated in Lyme disease because they suppress the immune system.
I would definitely keep taking the doxy because it sounds like you are on the right track. Thank goodness for your PCP!
You will need to research each antibiotic you take for Lyme because some negatively affect the ears. I don't THINK doxy is one of those.. but you may want to check it out.
It's a shame that so many drs have NO CLUE what they're looking for when it comes to Lyme disease and they believe every test they run.
It's possible that your test showed positive bands for Lyme but they overlooked it. Get a copy of your tests!!
Also.. if you were given the ELISA it is often falsely negative. So that's a bust too.
Glad you found us! I do hope your PCP can handle treatment from start to finish.
PS.. I would say you ARE herxing! Esp since we herx heavily every 3-5 wks... you are right on time!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
You have a long road ahead of you. Lyme (the spirochete Borrelia burgdorferi) rarely travels alone. You will need to be evaluated and treated for other tick-borne infections, too.
Ticks carry Bartonella, Babesia, microfilarial worms, retroviruses, and plenty of other microbes that we've barely begun to learn about.
Most of us have the 3 Bs: Borrelia, Bartonella, Babesia.
Treatment involves taking antibiotics for all of these infections. Most of us take 2-4 oral antibiotics at a time. You must also take doses that are high enough to penetrate the blood-brain barrier, as these critters love neural tissue!
Make sure your PCP know about co-infections and is willing to prescribe you enough antibiotics to get you well. Many docs are nervous about prescribing that many antibiotics, and will tell you that what you are taking is enough. Do not listen!
Please order the documentary Under Our Skin. It's at www.underourskin.com and at Amazon. I think it has a PBS showing this month.
It is an excellent documentary. Just excellent. You will learn a ton of information about Lyme. And you can educate your friends who think you are crazy.
You are not crazy. You just want your health back. Sounds pretty sane to me.
I went through the same thing for 30 years. ENT to neuro to Ent. I was told taht I had menieres and nothing would help me at this point.
Meclizine and xanax helped the symptoms and I was able to function but in June it went haywire. I was no longer able to work due to the balance issues, hearing problems, and tinnitus.
Seven months at home and docs cant do anything for me? I went to an LLMD on advice from a friend and was clinically diagnosed with neuro lyme. He feels the lyme has caused my menieres to become uncontrolled.
You need and LLMD who will go over the symptoms. You are not insane. I felt the same way as you did with my ear issues and I tried to force myself to work and carry on..impossible
I was put only on omnicef for over 2 months now and had a bad reaction the second week. The tinnitus was crazy and sharp stabbign pain in my ears and head. Then it stopped and I was just now put on zithromax also.
It is my fourth dose and feeling very sick again. My vestibular therapist called to tell me to be careful with mega abx since it destroys the hair follicles in the middle ear that cannot be repaired again. Make sure you ask for abx that do not affect the inner ear.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hang in there!!!
It ain't easy, but once you've climbed the mountain and reached the top... it is all uphill from there.
Didn't make a bit of sense, did I? HA! Too tired I guess.
What I am trying to say is... you are on the right road. Keep going!
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
stngray114, Glad you found us here.
One of my 1st. problems was (sinus infections). As soon as I got done with one another one cam back.
I also had/have all the other symptoms you mention, your not crazy. You'll find that most people will never understand what you're going through.
I think at this point you should go to (seeking a doctor) on this site, you should see a LLMD.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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chiquita incognita
Unregistered
posted
Hello friend Bearing in mind that this is not a diagnosis and is merely a question, have you had your thyroid checked? Many symptoms can mimic each other, and some things sound like lyme while others sound like possible hypERhtyroidism. Particularly, the weight loss accompanied by twitches and the like.
Does your heart tend to thump/race? Do you tend to over-react with adrenaline-like jolts to ordinary stressors? Tremors as you said with weight loss?
Again this is not a diagnosis, and many things can have similar symptoms as said. However, I would suggest that you ask your doctor to check your thyroid levels. IF found to be high, they can medicate you.
Bear in mind that I myself had hypERthyroidism at one point (very severe case, said the specialists) and then I researched the facts about the radioactive iodine used to kill the thyroid gland. Boy things were not pretty:
www.pubmed.gov this is the government's medical database where studies, drug facts et al are logged.
Regarding radioactive iodine (I -131): European studies were unanimous and vociferous that this is a "Very dangerous drug" and to "only use it as a last resort, when operations are contra-indicated". I looked up about 6 studies from Europe (England, Italy, Germany) and they were in full agreement. Unanimous."Side effects of leukemia (from radioactive I 131 iodine molecule) are widely under-reported" stated every one of the European studies.
American studies, just as unanimously, stated that this was a very fine drug, and that the "occasional" "Side-effect" of leukemia is just that, "occasional".
Why this discrepancy?
A nurse practitioner (off her clock, in person) told me that the American "Studies" are "done in the pockets of the pharmaceutical industries".
I told my endocrinologist that I was refusing the I 131. He had a shouting match with me, tried very hard to intimidate me. A health practitioner told me that the insurance companies "encourage" the docs to prescribe this drug because it is a one-time treatment, requires a short hospital stay and no follow-up medicating. So it's cheaper for them, in other words, and the docs are paid off.
I switched endocrinologists. The new doc put me on methimazole, also called tapezol. It took about 2 years to calm my severely hyper thyroid but it worked. And I had zero side effects, at least in my own case. Everybody is different, check with your doctor.
Sorry for this excruciating detail and I don' t know if hyperthyroidism applies to you. If yes, then please take note of the facts above. All the best to you and may you heal rapidly.
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chiquita incognita
Unregistered
posted
PS and many things you describe could be lyme or its co-infections too. It is also possible that this exists alongside hyperthyroidism (if my hunch about this is correct). Certainly that was my own case. Tackling one thing at a time is important. For me, it was best to take care of the thyroid first (and would have been life-threatening if I had not). But each case is different. Again it is not known if you have hyperthyroidism, but if yes, talk to your doctor about this and lyme alongside each other as possibilities.
If your doc is not sympathetic or the diagnoses do not satisfy you, then perhaps try switching doctors. You could try a naturopathic doctor, if this is up your ally, they would be sympathetic to lyme. Those trained at Bastyr University have outstanding education, and they are trained in drug-herb interactions, can prescribe mainstream drugs alongside naturopathics (in certain states), etc. Find a naturopath here, if this interests you: www.naturopathic.org
posted
Well, you got a great starter package of information from some of the most informed activists and sufferers on the site.
Not much more I can add. It's a lot of information. I suggest you take many notes from this thread and highlight some important points you want to look at.
You are very lucky you had a PCP who was knowledgeable enough to come to that conclusion and get you started. We must be grateful for that.
From here on out, you must become your own doctor. I can tell you that you're going to be confronted with a lot of contradictory information along this journey. What works for one person, does not work for everyone else.
Here's some advice:
1. Evaluate your symptoms, and write them in a journal you can track.
2. If your PCP does not understand co-infections, post in 'Find a Doctor' to find an LLMD in your area who can better assist you.
3. Be sure to be tested for any co-infections that are indicative of your symptoms.
4. Prepare yourself to make a LIFESTYLE change. This means doing any and everything possible to support your immune system along the healing road. You may need to quit drinking and/or smoking if you do.
5**.
DIET.
One of the first and most important things I did to start my healing journey was to evaluate my diet. First, you'll likely be on several antibiotics and need to be aware of developing GI issues like yeast overgrowth or C. Diff. So, you should be taking probiotics to help your gut through this process.
But, in my situation and many others, we have unhidden low-grade food allergies that can cause all sorts of inflammation and progression of symptoms. I was happy to feel some immediate relief when I started a mold elimination diet. Google that if you want to find a list of foods to avoid for this diet.
What you'll find most commonly here is to avoid alcohol, sugar and high intake of carbohydrates. I suggest you also do a search for Dr. B's Guidelines. This has a lot of valuable information -- like what you can expect for antibiotic protocols, supportive supplements, exercise and diet. Just be aware that treatments are progressing, and this is not the only standard for treatment. But, many people here have had great success with Dr. B's protocol.
Last, I know this is a lot of information to take into account right now. You're likely already very stressed from trying to understand what your body is going through. It gets easier with time.
I like to say Lyme has been both a gift and curse for me. I was already on the road to destruction and drinking myself into a pit for 10 years. Lyme forced me to decide how much I care about myself and make a change if I wanted to heal. I've made a lot of progress since I started, and if you stay committed, I'm sure you'll make it too.
I'm glad you find this site, and I hope you're not here for too long!
Posts: 829 | From MD | Registered: Dec 2009
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posted
I want to thank all of you for responding to my post! I am so glad that I found this sight, great advise and moral support which I really need right now.
I did have several blood tests, to include my thyroid, which came back OK.
I stay away from sugar, but do eat fresh fruits. Should I also refrain from eating fruit because of the sugar content in it?
My daily excersise is limited to a fast pace walk, my symptoms (mainly the tinnitus and ear pressure) skyrocket if I do too much. But, it really didn't start doing that until I started taking the doxy.
I do take a warm bath every night, and it also intensifies my tinnitus and ear pressure.
I am thankful that my PCP didn't hesitate to start treating me with doxy; but he really didn't give me much information about Lyme or what to expect during treatment.
I have an appt with him on thursday; I will no doubt have many questions for him. I am also going to look into seeing a LLMD.
Right now I am just full of emotions; depressed, angry, anxiety attacts every other day, and simply scared out of my mind!
Thanks again for all your support. I pray every day for each and everyone on this sight.
Posts: 21 | From ohio | Registered: Jan 2011
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Good morning stngray114, you�re right about getting advice and moral support, this is the best site you�ll find for Lyme information and support.
Baths are good, try putting a couple of cups of Epson salt in the bath. Staying away from sugar is good. As far as fresh fruit goes, most of us do eat it. Some have less sugar than others.
When I first got sick there was no way I could workout at the gym. For the 1st. year I walked every day for about 30-45 minutes. Now I�m able to work out at the gym, not a 100% but it�s better than nothing.
As far as (being full of emotions; depressed, angry, anxiety attacks) this is all part of Lyme disease.
If you haven�t read this yet, then you need to now.
http://www.lymenet.org/BurrGuide200810.pdf
Let us know if you have any questions after reading Dr. B � Guidelines? I'm sure you will...
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Please also feel free to join us over at www.lymefriends.org, a nice adjunct to Lymenet with a different format, more social networking but with lots of stored information, including links to pertinent info at Lymenet. I hope you make lots of new "friends" and get the answers you need! Sorry you have to join the club.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I forgot to mention that I experienced dizzy spells, pretty much on a daily basis, for at least a month prior to being diagnosed with Lyme.
I didn't get the vertigo, had no spinning sensation, just dizzy. I ended up at the ER in early Dec. because of severe dizzyness, had X-rays and was diagnosed with an anti-biotic (Levaquin for 10 days)
I also thought that something else was quite odd; when I had blood drawn before Christmas I didn't even feel a pinch or "anything" when she stabbed me with the needle and drew blood. I have had blood tests many times and have always felt something.
I also think that I failed to mention that my left ear went completely deaf after the third ear injection. I called the ENT's office the next day (wed before Thanksgiving) and was told to come in on the following monday.
So much for complete hearing loss being an "emergency'!! That following monday is when I received the fourth and final ear injection and placed on oral steriods for two weeks.
I went to another ENT a few days before Christmas; he just gave me a RX for a month of steriods and referred me to a neuro-otogolist at a major hospital.
As I stated in my original post, the neuro dr. is the one who finally had me take more blood tests (to include Lyme, arthritis, and others).
He also had me take an anti-viral medication (Famvir for 20 days). My second visit with Neuro Dr.; he was pretty short with me and told me that he did not think that I had Meniers and thought that it was caused by a virus. I was told that tests came back negative.
I questioned the accuracy of the Lyme test; the nurse told me that I do not have Lyme and that "I can wipe that clean from my plate.
After reading the responses that I received from the great people on this sight, it appears that I was prescribed the wrong medication (prednisone, steriod injections, which were prescribed to treat Meniers Disease) to treat Lyme.
It appears that the misdiagnoses at the beginiing did not do me any good. I just don't understand why the first ENT was not the least bit concerned that all this could have been a result of something viral or Lyme.
Now here I am four months later suffering like never before. I did look up all the symptoms for Lyme; do not have them all, but have enough of them for a clinical diagnosis.
Thanks again for all your advise and support!
Posts: 21 | From ohio | Registered: Jan 2011
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi stngray114
Here�s some thoughts on your dizzy spells:
The Lyme disease can cause it! You should get your iron levels checked! You were treated for sinus infections> Sinus problems have cause me to be dizzy! Any type of ear problems can also cause very bad dizzy spells!
All your symptoms seem very typical of Lyme Disease.
posted
Hi Steve. Yes I did read Dr. B's site and found it to be very informative. Thank you for the link. I did watch some of the Super Bowl; I live approx. 1 hour from Pittsburgh and Cleveland, but I have always been a Browns fan (not much to cheer about lately when it comes to the Browns)
Thanks for your input!!
Mike
Posts: 21 | From ohio | Registered: Jan 2011
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Hello stngray114, I have used Sweet Oil drops to protect my ears. It really helped mine thru many transitions-from super hearing to numbness, to painful to touch to now buzz...
I know it surely did no harm. Borrelia have been shown to like the ears, and I have also used heat pad in periods of extreme cold.
As well as the Epsom Soaks. I tried to have only what I had to have out of the water..
Then after rinsing in cooler water, use the sweet oil. Hope it helps yours. Any wally world pharmacy carries it.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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