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Lyme Disease
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Posted 10/25/2014 12:59 PM (GMT 0)
I live in Michigan. I have been a hard core athlete most of my life. Mountain bike racing, running and weight training are just some of my passions. I am also a adrenaline junkie, hence the user name "need4speed".
My story starts (actually my life ended as I knew it), November 2013. I was visiting my son in Utah and went for a long run/hike in the mountains. The next morning I was up early enjoying a cup of coffee and I started getting light headed, very dizzy and nauseas. Then it progressed to feeling very faint and numbness on the right side of my face. My brain was fogged and I could hardly walk. I really thought I was going to die. My son rushed me to the hospital, They thought I was having a stroke. During all the testing I also started this whole body trembling thing, plus for the first time in my life I felt what severe anxiety was. So after all was said and done they found nothing, They attributed it to possible altitude sickness.

So after getting back home to Michigan the problems continued. My symptoms worsened, migraine headaches, severe stomach cramping and pain, nonstop light headed and dizziness, whole body weakness. Then I would have my "attacks" This severe "surge" through my body like I was going to pass out, Severe shaking and tremble's. Several hospital emergency room visits and all I was diagnosed with was anxiety. My primary care doctor put me on SSRI's (antianxiety/antidepressants) I refused to belief that I suddenly developed a anxiety disorder. After several months of treatment and switching medications 3 different times they did nothing to help me. So I stopped taking them on my own.

During all the testing my primary care doctor was doing, he arbitrarily made another discovery. My kidneys were shutting down due to urine backed up into them. I had a enlarged Prostrate impeding my ability to urinate. So March 17th I had successful surgery (T.U.R.P.). Basically they opened up my passageway. That was easy, I still needed my original problem fixed.
So all my other symptoms persisted and some new ones thrown in for good measure. Now I am having shortness of breath and heart palpitations. The dizziness was also getting worse, now the room was swaying side to side.
So my primary care Doctor sent me to a ENT. They did a battery of auditory tests on me and diagnosed me on June 3rd with Meniere's disease (one of the forms of vertigo) I was actually very happy, knowing what was wrong with me! And that I would get out of this nightmare. They put me on a diuretic and told me I would start feeling better in about a month. Fast forward two months, the severe vertigo got better but I still felt horrible. They retested me and said my Meniere's test numbers were almost normal and I should be feeling much better. My ENT then asked me about Lyme, I told Her during one of my hospital visits they tested me (not IGeniX), and I was negative. She told me there are a lot of false negative Lyme tests out there. She suggested a good Lyme doctor to me.
So I set up a appointment with him, he explained to me that he only tests through IGeniX. I received my results back 16 days ago. I am concerned that I do not have a "positive" result. I would appreciate any feedback on my results. He put me on 400mg of Doxycycline daily. Along with 9 other natural supplements including probiotics. about 5 days into the antibiotic, it felt like a war was going on inside of me. My nasty symptoms increased and I was very weak. Then about ten days into my treatment my Meniere's returned. I know there is a relationship with the two diseases.

So today is day 17 of the antibiotics and I still feel horrible.
My current symptoms:
Headaches, pressure
Brain fog and lightheaded.
Stomach cramps, bloating and nausea (Have not felt hunger in 11 months)
Muscle twitches on the top of my head and my right face cheek.
Shortness of breath and heart palpitations.
Vertigo
Severe Adrenaline like surges.
Muscle weakness
Disrupted sleep pattern (sleeping 5 to 6 hours with roughly 4 wake ups.
Anxiety, body trembles.
Impaired vision.
I am not having the severe joint pains, excluding my neck.
Plus I never seen a rash or a tic bite.

My Igenix test result (Western blot)
IGM IGG
18 - -
**23-25 - IND
28 - -
30 - -
**31 IND ++
**34 - IND
**39 IND IND
**41 + +++
45 - -
58 - ++
66 - -
**83-93 - -

Needles to say my symptom's are making this very tough to type up, So please forgive me for any typos.

I have been through a lot, In the back of my mind I still Question do I have Lyme.
I still am looking in other directions (with energy that I do not have), but I would like to just focus on Lyme, (For many good reasons)

In conclusion, I am so sorry for everybody out there suffering with this disease. Only somebody living it could truly understand how horrible it is.
Thank you for reading my story, I would really appreciate your feedback.
Posted 10/25/2014 1:47 PM (GMT 0)
Hi and welcome to the forum. Sounds like you are on the right track as far as thinking you have Lyme with all your symptoms and them starting right after a hike. They say there's an incubation period of around a week but I felt it the very next day after I was re-infected so I don't buy it.

Doxy may help some but at some point you will probably have to try other combos of abx. Some of your symptoms like head pressure and shortness of breath indicate you may have Babesia which is a malaria-type infection. The treatment is usually Mepron paired with Zithromax or possibly Biaxin. Some will take Malarone instead of Mepron but from reading posts over the years it seems that Mepron is one of the more effective treatments out there. That and Tinidazole I would say which is an antiparasitic that also kills Lyme and its cysts. Many LLMDs will pair Doxy with Tinidazole to cover more bases.

Read all you can about this disease. You have to be your own doctor when it comes to Lyme. Good luck to you. It's a long road but you can get past this.
Posted 10/25/2014 1:57 PM (GMT 0)
Looks like when I posted my test results the columns moved over the top of each other.
So lets try it again.

IGM= 31 IND, 39 IND, 41+
IGG=23-25 IND, 31 ++, 34 IND, 39 IND, 41 +++, 58 ++
Posted 10/25/2014 2:48 PM (GMT 0)
Hi Need4Speed!
Welcome to our community! I would agree that you have Lyme. With your symptoms and those positive markers from your tests, it's hard to deny.

The reason you are feeling worse is because of the die off. When the bacteria die off (after starting abx especially, but any time), they produce toxins. The body can become quickly overloaded with toxins and cause a herx, or Jarrisch-Herxheimer reaction. The toxins are what actually drive our symptoms, so that's why your symptoms increase as the toxin load increases.

In our "New to Lyme? Start here!" thread that sits at the top of the forum has a ton of important information in it, including symptoms lists, detoxing suggestions (that really will help!) and more information.

If you are interested in what each band indicated on your tests, I can break it down for you, but know that all but bands 41 and 58 are what are known as Lyme specific and won't cross react with anything else. The more plus's there are, the more positive the result was, so you really should feel quite confident in your diagnosis of Lyme.

So that you know, there is some controversy that band 41 is actually Lyme specific, but since I have yet to see any scientific study to back that information up, I won't post that it is Lyme specific. I being a bit ornery on that.

Doxy is actually a good abx to start out on, but your LLMD should be adding in others soon. Many doctors will start their patients on it to see how well they tolerated it. If it's tolerated well, then they usually add in others or switch to something else completely.

We can help you find information and deal with getting through treatments - so welcome!!
Posted 10/25/2014 5:36 PM (GMT 0)
Thank you for the feedback guy's!
It sounds like I need to test for the co infections as well.
I would of had many chances to get infected, since I was biking and running in the woods several days a week.

I did read something on this board about Lyme disease and steroids do not mix.
I have a asthma condition due to a dog allergy. after my first symptoms started in November I decided (on my own)
to stop drinking coffee, alcohol and stopped using my inhaler. I felt that any stimulants made my condition worse. After about 3 months I started to have breathing problems from not using my inhaler.
So I asked 3 doctors including my allergist about using the inhaler with my condition (nobody even knew what was wrong with me then) They all said go ahead and use it. So I started using it again. after three days of usage it sent me over the top and right to the ER. The ER doctor tried telling me there was no connection and so did the other three after I seen them. I almost felt like they were trying to say it was all in my head! You would of thought that one of these highly educated doctors would of made the connection to Lyme disease.
So I would like to know if anybody else has had similar problems with using a steroid based inhaler?
Posted 10/25/2014 5:40 PM (GMT 0)
You might want to start a new thread with that question, Need4speed.

Not many doctors seem to understand that steroids should never be given when there is even a suspicion of an infection of some type! I don't get it. But the fact remains that all the steroids have warnings about not using them if a person is suspected of having an infection of some type. Is there any other meds that you could use that don't have steroids to help with your asthma?
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