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Old 08-12-2006, 08:31 PM   #1
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Question Medical Mystery, MS or Lyme?

Hi,
I am new here but was looking for advice or help, maybe even an answer?
I apologise for long story!

I am 28, Male, Australian and living in China. I travel extensively for my work, mostly South Pacific, Asia, Finland and only once to the US, to LA for 2 days. I have had no prev major health issues.

4 months ago, the night after I returned from Bahrain in the Gulf I woke up with a strange feeling in my left leg and increased heart rate. I thought I was having a DVT - obviously I didnt. This continued for a couple of weeks. I then developed stomach cramps and after a couple of simple blood tets I was dx with Helicobacter Pylori and was put on a triple therapy to rid the bacteria (1000mg Amoxylin - 500mg Clarythimicin and 20g anti acid) for 7 days.

The first day after the treatment started the twitching started in my left calf (I could now see what the strange feeling was) and it spread within 2 days to my arms. I then went to Australia for R & R and some more tests. Full Bloodwork was fine. Then on the 6th and 7th days of the treatment and for a couple of weeks following the treatment I had whole body muscle twitches, whole body jerks, profuse night sweats, tingling throughout my whole body and I was sure my time was up!

Brain MRI was clear, Nuero in Australia said it was anxiety and told me to take a 2 week holiday - so I did.

Night Sweats, muscle twitches, tingling continued. On return I convinced my Nuero to give me a EMG and Nerve conduction studies - these were normal. Nuero started me on anti depressents. Although he thought maybe Adrenal Gland/Hormone problem and tested because my blood pressure was high - Tests = normal.

Was then tested for Malaria - 2 hours after blood test and I felt so weak I had to lie down, then noticed some strange lumps just above my wrist (3 or 4 which were about the size of grain of coffee) and were sore to touch but when I pushed on them they dissapeared, 2 hours later and they reappered higher up my arm closer to my elbow, same story sore to touch and when pushed on dissapeared, the next day my elbow was very saw.

Then one day about 2 months ago and the symptoms all stoped, I celebrated with a couple of beers, it was over. It must have been anxiety!

The next day, muscle twitches came back everywhere and from that time until now the symptoms have again progressed, and included even twitches in my entire face (cheeks, lips, temple). I developed a strange rash on my stomach (not the bullseye type), had an episode of sore eyes and developed "floaters" in both eyes, everyday have strange cracking/creaking noises in my neck and throat, had one time immense testicular pain, had one time shock like sensation in my jaw, occassional back pain, tinnitus, have occassional feeling my ears are blocked, strange new headaches which usualy radiate from neck upwards, parathesias in nose, eyelids, cheeks which cause irritation of eyelids, feeling my body is shaking, occassional episodes of heart palpitations, feeling my whole digestive system is not working correctly, newest symptom is that my joints crack and there is pain and not to mention my emotions are a like rollercoaster.

Seen so many doctors in Australia and now in China (None of who I would imagine have any idea about Lyme) and none can find the problem.

Last week had a MRI of cervial spine - also Normal.

I am now back in China, one doc said MS, Nuero said no chance. From my extensive research Lyme is the closest diagnosis I can make and perhaps my reaction to the triple therapy of antibiotics that I took at the start for the Helicobacter was a Herx?

Unfortunately difficult to test here for Lyme but Convinced my doctor to start me on doxycycline anyway, he prescribed 200mg per day. A Problem also is that I cant imagine where I would have been bitten!

What do you guys think?
I trust here more than some of the docs I have seen!

 
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Old 08-13-2006, 06:40 AM   #2
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Re: Medical Mystery, MS or Lyme?

Hi there ShanghaiSD, welcome to the board. Sorry you are suffering like that, and in a country with so little knowledge of lyme too. I can't even suggest that you see an LLMD over there, where would you go? Can you get to the states for a while and get some care here? Or can you get a doctor to talk to someone here and at least they will explain how to get tests from Igenex. Then you could at least be tested properly.

The symptoms sound much like lyme, as you already know. Take very good care of yourself, I hope you are able to get tested. Take pictures of the rash too. Are you getting any herx reactions from the abx?

Good luck, keep writing in so we can know how you're doing and hopefully offer encouragement and help whenever possible.

 
Old 08-13-2006, 07:25 AM   #3
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Re: Medical Mystery, MS or Lyme?

Hi Shang...I agree with Sleeper ....does sound like lyme to me also....and as she asked is there anyway you can come and see a doctor here in the states? Or do you think your doctor would want to learn something new Maybe he could talk to some of the LLMD.s here and go with their protocol....bascially it boils down to...you need a higher dose of antibiotics and you need more treatment than what you are going to get there....

Do they have lyme in China? I've read it is all over the world...and as you have read I'm sure you can get lyme from other things besides ticks....

Good Luck to You...hope you can get the proper help weather it is lyme or not....

God Bless!!

 
Old 08-13-2006, 04:33 PM   #4
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Re: Medical Mystery, MS or Lyme?

Having a doctor draw the blood in any country and then sending to Igenex for Lyme testing is an excellent idea Sleeper.

Last edited by itsmylife; 08-13-2006 at 04:33 PM.

 
Old 08-14-2006, 03:57 AM   #5
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Re: Medical Mystery, MS or Lyme?

Hi Shanghai,

When I was first diagnosed, I also could not recall a bite.

I was told that the bacteria can lie dormant in your blood - sometimes for years - until they are kicked into action when your body becomes stressed, either mentally or through another virus. It sounds like either could be a possibility for you.

There is Lyme Disease in Australia and Finland is also a possibility. I'm sure that you must be able to get tests done in Australia. Do you manage to get back home much?

I'm not sure but I think that the "Marshall" who developed the "Marshall Protocol" (one of the suggested cures for LD) is Australian, so some searches on that name might help you.

I hope that you find your answers soon.

Janet

 
Old 08-14-2006, 04:45 AM   #6
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Re: Medical Mystery, MS or Lyme?

Just nipping back again because I found something whilst researching that might be relevant to you.

Apparently tick borne encephalitis (from the ixodes ricanus tick) can be caught from untreated milk from infected cattle. This illness is found in Scandinavia and a closely related disease also occurs in China, Korea, Japan and Eastern areas of Russia.

It might be worthwhile doing a few searches on that illness and comparing symptoms.

Janet

 
Old 08-15-2006, 01:54 AM   #7
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Re: Medical Mystery, MS or Lyme?

Thanks everyone for your valuable feedback. It really is very encouraging!

I have some more questions

1. Is it even possible to send blood to IgeneX from abroad?
2. Now that I have started abxs isnt there more chance for a false negative?
3. One Nuero said I should try 3 weeks of IV Rocephin instead of the doxycycline, does this sound right and is it possible to have IV abxs done from home?
4. He also said I should have a Lumbar Puncture, have any of you guys had this? I heard it is not as worthwhile for Lyme!

The trick for me is to convince the nuero here, he wants me to see a Psychiatrist. From all the reading I have done, seems like this has happened to many people. I have also already seen a Psychologist and been told I dont have a Psychological problem.....I guess some Neuro's think they have seen it all!


Last edited by ShanghaiSD; 08-15-2006 at 01:56 AM.

 
Old 08-15-2006, 04:20 AM   #8
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Re: Medical Mystery, MS or Lyme?

Hi ShanghaiSD. I can't believe they are giving you the line about seeing a psychiatrist already. Usually doctors do that when they don't have a clue, so I guess you are already at that stage with these people. Sorry to hear that. Here are my answers to your questions, maybe others will have some different input.

1. Whenever I use Igenex, I send the package Fedex, which they recommend. So, I would imagine that if you have access to Fedex, then you can send a package to Igenex. If not, call them or email them, they have a website and they are very friendly and accommodating. I just called them yesterday for something and they were great.

2. Igenex has a urine test that they do where they find dead lyme and lyme DNA in your urine. They actually suggest that you take antibiotics during this test because it will kill lyme during the five-day collection period and they will find it when they test. It's probably their most accurate of all the tests. If you want to do the blood test, they will find the lyme there too if you have it. Believe me, a couple of weeks of abx will not get the lyme out of your system completely, if it would we would all not be here.

3. You can have IV abx at home, many here have had the IV rocephin. It is a widely used protocol that seems to be effective. If you do that, read some of the previous posts about IV users, they have some good suggestions. Oral doxy works too. I started out with oral doxy and then moved on to other abx over time. It seems like both are good. IV's are much more expensive, you would have to check with your insurance company and get the okay and see how long they will let you do it. It costs something like $12,000 a month.

4. No, I don't think the lumbar puncture has turned out to be useful. They do find lyme that way sometimes, but I just think there are other ways. Some people here have had them. If you can test blood and urine, why mess with the spine? I guess I don't understand that practice, maybe someone else will come along and give insight there.

Keep educating yourself, you are doing a good job! Let us know how things work out for you. Wishing the best for you...

 
Old 08-15-2006, 06:32 AM   #9
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Re: Medical Mystery, MS or Lyme?

Hi Shang....Actually there isn't ANY reason to go to a shrink....unless YOU feel the need to. I was mis-diagnoised and was told for a few years that I was BI-POLAR.... Unless you want a label put on you then there truly isn't any reason...beings it is not an illusion that you don't fell well.....

Yes I had a Picc line in me for 7-8 months the first time ....I went to radiology and they inserted it...then once a week a in home health nurse came out and took my vitals, and changed the dressing...just kept an eye on it to look for infection at the insertion sight......I did Rocephin and ummm...can't remember the other antibiotic and flagyl....you have to be extremly careful with the Rocephin...it is very harsh on the gall bladder...others on here have had gall bladder problems with it also...I was doing milk thistle but guess I should of been doing other things along with it to help clear the gall bladder...anyway I still have a gall bladder...
After that picc line I had another one put in for about 3 months with different type of antibiotic...then my doctor retired and I was off of them.....

Noooooo I would not suggest a spinal tap....If you know that you have lyme then just stick to that...NONE of my test EVER came out positive...through Igenex or any other lab...bands showed up but no one wanted to say okay you have lyme...I knew I did and so did the doctor that treated me...Thank God....took 15 years for someone to believe me...but he was having problems being bashed by so many other doctors in the area so after about 3 years of treating me we did a Spinal Tap....it was done right there in a doctors office...but man it knocked me down worse than I was....and nothing showed up...someone said I do believe here on the boards that only about 3 per cent show up...it is not worth the time or money......

And like Sleeper suggested...either call Igenex or e-mail them....Oh reading back over your post....From my experience 3 weeks of antibiotics through the picc line is not going to be enough...if you have had lyme for quit awhile it is going to take you a while to get rid of it.....

Good Luck and really glad to here that you found a doctor there to give you antibiotics...keep fighting the fight....it does get better....

Jodie...

 
Old 08-15-2006, 09:29 PM   #10
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Re: Medical Mystery, MS or Lyme?

Hi Guys

Thanks again for the info.

I guess the Nuero wants the Spinal Tap to rule out other things, like some kind of viral encephalitis. I know there is a small chance that i got Lyme without realising, but I really cant imagine when and where. He also reccommended a SPECT Scan of the Brain to rule out other possibilites. Unfortunately this is not from a Nuero in China and now i need to convince the Neuro here (the one who wants me to see a Psychiatrist) to run the tests.

Also seems like sending my blood to IgeneX is not possible, doubtful to get past Chinese customs according to FEDEX. Maybe a trip to the US may eventually be waranted, but where to go in the US? I have also heard some docs take months to see?

In the past few days, although feeling a little better (less headaches), I have noticed that my jaw has started cracking/popping and feels like it is kind of grating when I open it. I know joint problems are a common sign of Lyme, but this doesnt really seem correct, could it be?

Shang

Last edited by ShanghaiSD; 08-16-2006 at 06:37 AM.

 
Old 08-16-2006, 04:34 PM   #11
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Re: Medical Mystery, MS or Lyme?

Shang
You're in between a rock and a hard place as we call it. I hope you get some answers. And I have TMJ type pain frequently. It is a common symptom of lyme. Prayers....Marsha

 
Old 08-16-2006, 06:04 PM   #12
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Re: Medical Mystery, MS or Lyme?

Hi,

Over 300 species of Borrelia burgdorferi (Lyme bacteria) are found throughout the world, on every continent. In fact, in one instance migratory seabirds in Antarctica were found to be carrying ticks. And yes, believe it or not, some of them were infected with Bb!

I'm not sure about sending blood to the US from as far away as China. The reason is is that I think it is time sensitive, that is to say that if the blood is allowed to sit for too long it will affect the accuracy of the test. Best thing to do in this case is to call the lab and explain the situation.

In the meantime, if you can't find a Lyme literate doctor to evaluate you, you might want to try a doctor of traditional Chinese medicine. Many of them are highly knowledgeable and have a lot of practical experience as well as information based on many years of observation. If there has been a history of that type of symptom in their area, I can almost bet they will be familiar with it. In some cases, because of their "hands-on" approach, they may be more knowledgable about certain things than their Western allopathic counterparts.

 
Old 08-20-2006, 08:00 PM   #13
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Re: Medical Mystery, MS or Lyme?

Hi shanghai...

first welcome to the board.

secondly i agree with all the great info you've been given, very good adive.

thirdly about ms/lyme - that's what the many docs at the beginning told me, that it was ms. the spinal tap is what put them over the edge since there was no eveidence of lyme in it, and my mri's showed white lesions in various areas. anyway i got a second opinion and it's definitely lyme. been getting treated now going on year and a half.

and also about the jaw popping/grating...that is a very big problem for me. my jaw actually swells up now and hurts very badly. just a part of the lyme for me.

from waht you say about your troubles it sounds a lot like lymes. i'm glad that your'e doc is willing to look at that option and give you iv's. keep posting here and i wish you good luck. i know it must be tough. hang in there.

shanna
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"Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

 
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