Another Lyme Thread

[ariella]

Hi

Anyone here whose dysautonomia is known to be brought on by Lyme disease who also has severe, unexplained muscle weakness?

I'm about to go for an urgent EMG, as my muscle weakness has gotten worse, and I cannot really move my toes. The doctor is questioning the original myasthenia diagnosis, and is looking for worse. I live now in Israel where they wouldn't think to test for Lyme---we don't have ticks. But I'm from New York and Pennsylavania, and lived in a wooded area with deer around Philadelphia before symptoms. The doctors kept saying that usually a person has only one major disease as the root.

Exploring this avenue now. Gosh, I wonder if they can even test for this here.

Ariella

[Ernie]

Hi Arielle,

My doctors were telling me the same tihing - about having only one major disorder. I continued looking for answers and now tey are telling me that I have 2 rare disorders. I have some family members who have 3 rare disorder (in the same body!). So you never know.

Could you send you tissue sample to the States to get tested for Lyme?

[tiger]

I am being treated for lyme and had severe muscle loss from it. Had an EMG which was normal. If you want to be tested for lyme, it needs to be a Western Blot test done through IGENEX labs. You can go to their website www.igenex.com. This is the most reliable test for lyme as they test for many different strains of lyme compared with other labs. I had an ELISA test for lyme which was negative( most lyme patients test negative and this test is unreliable) so don't even bother with this test if you doctor orders it. Since being treated for lyme my legs are alot stronger, but haven't really gained any muscle back yet. I do believe the dysautonomia was triggered by lyme. Don't worry, it will get better.

[ariella]

hi

Ernie, you earned a good chuckle...3 disorders in one body---guess that's econonmical.

I am going to call today to find out how to send whatever samples they need. Still waiting for my family doc to get back to me.

Sara, thank you so much for the info on the lab. Since I'm not living in the US now, I'm not bound by insurance (for better and for worse) and could use any lab I want, or so I imagine. Unlikely my health insurance will pick this one up. Going to call them today to find out the procedure.

Ariella

[yikespanic]

Ariella שָׁלוֹם עֲלֵיכֶם

I came down with a virus in Dec of 2004 which I feel I have never completely gotten over. I experienced muscle weakness, fatigue, dizzyness, painful joints in fingers, strange weakness feelings in my legs....All kinds of goofy symptoms. Someone mentioned LYME to me a few months ago and I found a (LLMD) Doctor who treats LYME patients and went to see him in a neighboring state (Pennsylavania) He thought my symptoms including the onstet of my POTS could be LYME, (I spent alot of time in woods and in the country), After being tested by IGENEX labs he thought by my test results and clinic diagnosis that there was a very strong possibility so I began treatment and I am on my second month of antibiotic. I have to say I have seen some improvement, and I hope and pray it continues. I would get tested if I were you, just to rule it out. It was not extreamly expensive, I paid myself and sent for reimbursement to my insurance co. I had the Western Blot and a three part urine test. I do hope your can find the root cause of your dysautonomia and receive the proper treatment and be on your way to recovery.

http://flash.lymenet.org/scripts/ultimatebb.cgi This is a good link to do some research and ask questions about LYME, just be carefull not to just believe everything and anything, my doctor says there is some silly quakery on it to. But it in general is a good place to talk to other lyme patients and there is a lot of info.

http://library.lymenet.org/domino/file.nsf...02?OpenDocument

This is a link to treatment guidlines on the lymenet.org site.

Take Care and keep in touch and let us/me know what happens. I've run into a few of us POTS patients who did find out they had LYME.

Kim

[Guest tearose]

I am so sorry for all you are going through.

I had a borderline positive test for lyme and several negative tests.

I did do long term antibiotic treatment.

Who knows what I really had? Maybe there is a spider bite of some sort that does similar damage and they just haven't figured it out yet. It took years to understand MS and erlichiosis....

Bad news is that all those antibiotics made me allergic to many now. Also, lyme is not easily and accurately dx but I chose to do the treatments.

IF I had lyme, I felt I treated it enough.

I do have permanent damage to some of my lymphatics. I did do damage to my pelvic muscles when over doing exercise/activity. I STILL deal with hyperadrenergic POTS and I have permanent damage to my baroreceptor reflexes.

Just don't push your body. If your muscles are weak...give your body time to slowly rebuild. Try to do tiny activities like a foot wiggle or a leg lift or arm lifts...just don't decide to hop on the treadmill and "get in shape" ...you may do damage. Let the doctors figure out what they can first.

I am truly feeling for your frustration. You will need to direct your care takers while you learn as much as you can to make the best decisions for yourself. Talk to your doctor about this...I think that if you have any sense that you have some kind of active infection then antibiotics are a good choice.

best regards, tearose

[DancingLight]

Ariella,

Oh my! I cannot believe how much Lyme is popping up on this site. I'm a PA girl too and definitely had the tick exposure factor like you did.

I am now being treated for Lyme also after 8 years of searching...I am really needing to post an updated thread on things and explain my decision as it might also help you. It's such a complicated illness. If you can read some old posts by Jenn202 and Blackbirdsings...they know a lot. I am just learning along with some of the other folks just plunging into treatment.

Igenex is not the only lab you can use...Also Stonybrook and one other, which I forget. It may be possible to have a phone consult with an LLMD in the states to find out what tests you need?

I know it is controversial, but after 8 years of dead ends, I am taking a HUGE leap of faith and treating for Lyme. Some doctors actually believe that anyone with a multi-system illness such as FMS, CFS, etc that does not improve with other treatments (i.e. me not responding to ANY meds used so far for ANS dysfunction) deserve a shot at antibiotics.

Right now, for me, the treatment is miserable and that is why I am never online these days....I will try in the next week or so to post an update on stuff. I just couldn't pass up your thread. I've wanted to post too to Yikespanic and others being treated for Lyme--there seems to be a whole group of us POTSIES and LYMIES combined emerging.

Please email me if you want and I can try to answer questions better? (my PM box is full! Sorry!)

Later alligator!

Emily

P.S. How the heck did you get the Hebrew to print like that Kim?????

[ariella]

thanks everyone

what's interesting is that the only time I felt some improvement in my general condition is for a couple of weeks following pneumonia. Because I had??? probable myasthenia gravis (which the neuro thinks has now gone beyond and is less resembling MG...the symptoms are more ALS-like) the doctor treated me with an unusually strong antibiotic. One would think that following pneumonia I would have been worse, but it was my best couple of weeks in a long long time.

I was already in touch with one of the labs, I can fedex a blood sample over. It's simpler than I thought.

I hope it doesn't take long. I pretty much need a wheelchair now most of the day because my legs don't work. Mestinon stopped working too---both for the supposed MG and for POTS.

ps Kim, thank you for the links. I didn't see the Hebrew until Emily just poirted it out! I used to joke that the source of my neuro problems must be that my brain is fragmented from speaking 2 languages simultaneously

[Guest tearose]

ariella, if it helps any...

I learned from my ENT after dealing with sinus issues and taking an antibiotic for a time...

antibiotics are an anti-inflammatory in the body! So as my doc explained....naturally you would feel some improvement! This helped me understand why I feel better overall when on an antibiotic!

Hope this offers you an insight.

best regards, tearose

[yikespanic]

Emily,

I just cut and pasted it from something else.

I noticed too, the number of LYME and POTS patients here on the site. I travel to PA once a month to see my lyme doc, thats exahausting. They can only give you a one month rx and you have to go back to get the new one and be checked. I also gotta get blood work once a month to check liver and other enzymes to make sure the antibiotic isn't hurting me. I have to start keeping a diary like he asked me to cuz I keep having really bad flu like days he thinks are herx's? Are you feeling any better since beginning treatment?

I felt better once last year after taking an antibiotic for a bad sinus infection.

Kim

[ariella]

Gotta wait now...

Spoke with the lab, I can't send them a blood sample until I am off the prednisone for a week. That will be in 4 1/2 weeks from now. So, basically it will be 7 weeks at least until I know anything!

[laila]

Ok I am printing this thread, the only time I feel halfway decent is if I am on Biaxin, forchronic sinus problems, and my ENT also said it has an anti-immflamatory effect. But this has been for 10 years now! If I"m not on it I feel weak, shakey, rubbery legs all day. IF it were lyme can you stay on them forever? I guess I'll bring this in and show my doctor. I am just finishing up a 28 day course! I can almost do everything I want when on this stuff. I still get bad leg pain and take 1 ultracet a day at the most, which really helps the pain and keeps me going longer.

[tiger]

Laila-

There are many different antibiotics that treat lyme, and Biaxin is one of them. If you had lyme, you would have to take several different kinds of antibiotics to treat the different forms of the spirochete (bacteria). It depends on how long you have had lyme to determine how long you should be treated. But then again lyme can cause pots. Some pots patients symptoms have improved with the treatment of lyme, but it is not a cure for pots. You would not want to take the biaxin for a long period of time because after a while the antibiotic will lose its resistance and will not work any longer and no you can't take it for life. I would encourage you to get tested if you have not already. Have you been bitten by a tic? There is alot of info on lymenet.org. Also, tics carry other diseases, like bartonella(cat scratch fever), erlichiosis, and babesiosis. Hope this helps.