Hi I have written this in a couple of forums and most think it is highly likely I have Lyme, However i really can not remember being bitten by a tick and do not have some of the more classical symptoms i.e. Extreme fatigue and large lymph.
Anyway I want to know what the Lyme experts think because where I am at the moment there are no people who know about Lyme and there is no better people to ask than those that are dealing with it - please see below and I apologise for the length!
I would really appreciate any help!
MEDICAL MYSTERY, MS or LYME?
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 a strange flu like feeling but i knew it wasnt the flu. After a couple of simple blood tets I was dx with Helicobacter Pylori and was put on a triple 7 day therapy to eridicate it (1000mg Amoxylin - 500mg Clarythimicin and 20g anti acid).
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. Thats when they also found the stomach ulcer (I guess that wasnt anxiety!)
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/anxiety tablets anyway. Although he thought maybe Adrenal Gland/Hormone problem and tested because my blood pressure was very 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 on bottom side of arm (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. Was not Malaria.
Then about 20 days later had 1 day of no symptoms, so had a beer (Aussie tradition), only anxiety!
Next day symptoms started building again and until now have had- -Every day Whole body/facial muscle twitches - irregular and inconsistent but never continous in the one spot. -strange cracking creaking noises in neck throat -Whole digestive system feels wrong -Strange eczema looking rash develop on my stomach -Some eye pain + increased floaters -parathesias in eyes, cheeks, nose, makes eyelids dry -occassional tinnitus -strange new headaches which radiate from my neck -transient muscle and joint pain 1 time intense testicular pain 1 time shock like jaw pain 1 time heart palpatations, 120 heart rate(watching TV)
Now in China, Lyme testing not possible. Started Doxycycline two weeks ago and my headaches and digestive system have improved but at the same time my joints now start to crack/pop easily, I am having TMJ trouble and my ears make some weird popping noises occassionaly.
I also just had an MRI Cervical spine - Normal
1 doc said maybe MS, but not able to diagnose!
Any ideas, if not Lyme or MS then what else?
Posted by SForsgren (Member # 7686) on :
Sounds very possible to me. What tests have you had done for Lyme disease and related co-infections? Did you get tested via IGeneX lab yet?
Posted by lymie tony z (Member # 5130) on :
Something you and your docs may not know...
Helicobacter Pylori is crossreferenced in blood tests with lyme.
I went thru the tri-med regimen some time ago and cleared my symptoms of heartburn...but I still show positive for h-pylori whenever I get blood tests....
why?...cuz I still show positive for lyme B.Burgdorferi...
Many, 70 percent of us never see the tick or get the rash usually associated with lyme diseas.
If you were in and around the middle east it's a good possibility that you have Gulf war Syndrome which I believe is strongly linked to lyme disease, if not,one and the same.
Get a kit from Igenex labs and send your blood in to them for a check on what your have...western blot specific for b.burgdorferi...
It may clear up your quandry.
Also given that you are a gobetrotter...you may want to get checked with an infectious disease type panel...for CMV, equine encef,herpes, babesia,bartonella...you get the idea......good luck.... zman
Posted by radiogirl (Member # 9202) on :
Hi, I agree with the above posts .Try to get somewhere were they can test you for the various infectious diseases at least you can rule out some things.If you have been to the gulf make sure you go to www.immed.org Prof.Garth Nicolson is considered an expert on gulf war syndrome .He developed the tests that detects the pathogenic microbes and has helped cure many of the gulf war vets including his own daughter. His website is set up to read the published papers and the treatment considerations.I have even been told that people have emialed questions and they will reply.Good Luck
Posted by bettyg (Member # 6147) on :
I'll pm you with my newbie links/advise, 15 pages.
In it is the complete list of 125-150 symptoms list.
Gulf war was what I was thinking also. Does the service provide you any medical coverage still since you are now in China?
I agree with the rest; test with IGENEX, Calif., www.igenex.com and you must download their requested form. MD must sign, date, put a DIAGNOSIS code on why you are being tested for insurance purposes. IT'S PREPAY $190 for the western blot IGM & IGG blood tests for lyme only.
Other tests are different costs. Call their 1-800 no. for more info. Go to their site & read up on things.
In my pm, I have typed a lyme brochure which includes each of the co-infections...their symptoms & RX meds. Check it out against your symptoms.
You did an OUTSTANDING JOB on your details and breaking it up nicely so it was easy to read for us neuro lymies! Thanks a bunch & good luck. Bettyg Posted by groovy2 (Member # 6304) on :
Hi Shang
Sounds like you could have both Lyme and or Babs-
I have always has a feeling that Gulf War syndrome might be Babs--
I knew some sone who got it and his symptoms were very close to mine--
The Europeain strain of Babs ia especially hard to get ride of --
Babs symptoms=(similar to malaira) night sweats -twitching- cracking joints-crazy heart beat- tingles- stiff neck- head aches- chest pains- ringing in ears- joint pain travels-
Sence you travel you can get-- Travel Meds -- from travel doctors--
Get Doxycycline and some Quinine pills-- Take them and see what happens--
Fallow med dosing recomendations listed on this site--
Also the tests for these diseases are Very poor almost useless-- so dont put much faith in negitive test results--Jay--
Ps Also take a picture of your rash and post here-
Posted by TheCrimeOfLyme (Member # 4019) on :
It sounds possible that you have lyme.
It also sounds highly possible ( considering your traveling)
that you have parasites. Im surprised no doc mentioned that to you.
Posted by Carol in PA (Member # 5338) on :
ShangSD:
I saw your question on the other health forum, and I thought that many of your symptoms looked just like Lyme.
Congratulations on getting over here to post. You are doing a good job of investigating your medical problems.
Carol
Posted by Truthfinder (Member # 8512) on :
Shang, I hope you are still traveling quite a bit. That may the only way you will be able to get tested for things like Lyme, mycoplasma, other co-infections, etc.
If you have been reading some here on this forum about Lyme, you probably already know that Lyme testing is not very reliable. But the best ``mainstream'' lab for Lyme and common co-infections is probably Igenex out in California. I have never used Igenex, so don't know what countries Igenex receives test samples from. You could contact them and find out. I don't find an e-mail address for them so you may have to call or write. http://www.igenex.com/
Another Lyme test that some of us use is the Bowen Q-RIBb test. I believe Bowen still has some basic tests for Babesia and Ehrlichia, also. The Bowen test WILL show positive if you have the Bb Lyme bug in your blood. And it shows how much you have. If you have a different strain of Borrelia other than Bb (from another part of the world), however, it will not show that (according to Bowen).
At one time, the Bowen website showed that they receive blood from doctors ordering the test from Canada, Brazil, Denmark, Scotland, The Netherlands, Ireland, England, France, Spain, Germany, Switzerland, and the Canary Islands. There may be more countries now. Again, you would have to contact them. There is e-mail contact information at their website. If they service a country that you visit, they might even be able to tell you the name of a doctor there who uses Bowen. They did that for one friend of mine.
I don't have any idea of what you have, but you sure could be one of us.
Tracy
Posted by northstar (Member # 7911) on :
Hi Shang:
"Lyme" is in Australia, Finland, Asia, all over . My understanding is that "lyme" refers to Borrelia sensu stricto, and for some tunnel visioned dr's, arthritis is the only manifestation.
The rest of the world seems to call it borreliosis, and then some are starting to use them interchangeably. Whatever it is called, borreliosis seems to cover all the geographical and symptomatic territories.
The problem is that there are different species and variations of borrelia in all these countries, and within countries, which may be reflected in test results.
And then the question becomes how does one test for all these species if tests are limited to sensu stricto in U.S. This is one of the reasons for seronegativity even withinin the U.S. Also, this is why "lyme/borreliosis" is a clinical diagnosis, and why you need to see a lyme specialist (llmd).
Then, there is the additional possible problem with parasites garnered from international travel.
Also, you could have been carrying borrelia contracted at any time in your life, even childhood, but there may have been an immune breakdown with stress from travel, or from introduction/innoculation of additional (generic) parasites, whether though food or insect bites or water contamination.
For some reason, I would recommend "seeking a doctor" (on this site) to find a dr's name from the San Francisco/Bay area, as there is large international population there. There should be direct flights.
Additional sources would be contact CALDA (Ca. Lyme Disease Assoc.), and support groups (top left links on this page) from Calif.
Air carrier for blood transportation may not be as reliable/quick from China, as from European nations. The blood does degrade, which would affect results.
While seeking/waiting, keep a dated daily log, and photograph any skin/dermatological manifestations.
Also, while waiting, there is also the Buhner herbal protocol, if you search on this site. The book is also available from amazon.com on the left side of this screen. I do not know if this interferes with any test results.
The Bowen test, although controversial to some md's, as recommended earlier, may provide further clues/hypotheses for what is floating around in you.
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