posted
After 5 years of symptoms told MS in June and put on Avonex. Friend referred me to a LLMD who says I have Chronic Lyme with co-infections. I want to start on a 16 week course of IV antibiotics but concerned that the Avonex (since its a blood/brain barrier blocker) would interfer with the antibiotics reaching the lesions in my brain and decreasing the effectiveness of the antibiotics. Since this treatment is so costly, I want to do everything possible to allow it to work. Should I stop the Avonex during the 4 months of IVs? My MS doctor says its not Lyme (no positive Lyme test as less than CDC required bands on Western Blot - 41k on IGG and 34K IGM only) and my LLMR tells me to reduce the Avonex. I want to stop it all together if it will help me get healthy. If its not Lyme I lose 4 months from the Avonex treatment. If it is Lyme, then we score a big one. Would really like to get a doc to respond to this question or someone who knows the facts as I meet with my MS doc on Friday and want to have the right response. thanks
Posts: 3 | From NC | Registered: Oct 2007
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bettyg
Unregistered
posted
welcome dave!
i've sent you by private message my 79 page newbie package of links, advise, symptoms, tests, disability, much moe including treepatrol's archive link of over 1000 links of good lyme info!
NO LLMD DOCS POST ON HERE!
i suggest you look at the beginning and print off dr. burrascano's 33 pages of 2005 lyme treatment guidelines.
no knowledge on what you are asking!
please reply to one of my private messges telling me the full name, city/state of your llmd.
i'll check my lists to make sure they are on the GOOD list of llmds or not!
First---only you and your doc can decide what is best. This is only my (somewhat simplistic) opinion as seen through my husband's experience with MS and lyme.
My husband was on Avonex before abx for lyme. He had a classic MS dx. Like you we then explored the possibility that his MS was caused by infection. He started out with oral antibiotics and we decided to hedge our bets and have him stay on Avonex.
Well, after the first month and given his rather telling (herxheimer)reaction to the abx he decided to quite the Avonex.....he hasn't looked back since (2 yrs in Jan).
Now, I have no experience with IV as my husband has never been on it. Honestly, I don't think quiting the Avonex to give the abx a try is such a radical idea......It's not as if Avonex is so efficacious that a short break would matter....again, just my opinion.
Tough choices all, but I say, go full boar with the lyme treatment....Chances are you will know rather quickly if it is working and you'll get the warm fuzzy, like my husband did, that you are on the correct path.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
thanks for the repies as I lean towards stopping the avonex for the 4 months while on IV abx and then I'll know for sure. THX dave
Posts: 3 | From NC | Registered: Oct 2007
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I wasn't dx'd with Lyme and coinfections until late in 2006. This is how it went down for me - I'll try to boil it down but that is not a strong suit for me - apologies.
I was dx'd in '99 with MS, eventually I accepted that and agreed to try Avonex. I took that for 18 months. I really wish they would have tried an antibiotic first. I wish all MS diagnosis would be challenged with an appropriate course of abx first - maybe they will in the future and many immune systems will be saved. - sorry - soapbox.
I believe that Avonex was partly responsible for the advancement of my Lyme and coinfections by reducing my immune system, etc. That in addition to the multiple misdiagnoses prior to the MS dx.....
In '02 an additional dx of Fibro - as MS isn't supposed to be `painful' - so I was told. The Fibro meds did nothing to touch the pain, anything that helped the pain, knocked me out and I couldn't function.
As my health disintegrated, I sought alternative means and became a nutrition/supplement fanatic. I wouldn't even take Tylenol.
If you haven't already - most MSers have - read Dr. Roy Swank's books. That was my first and very successful try at life without meds.
I found a primary care doctor who was fighting cancer herself. She helped me rebalance my body, ordered tests and suggested supplements, nutrition and activities. I experienced a nearly complete remission.
Of course, healthy life was for living and I really burned the candle at both ends. Huge mistake and one I remind myself not to take again.
By Sept of 2006, I had really crashed. I `quit' and went to bed for a couple of weeks. I hadn't seen a doctor for a couple of years and decided it was time to get help. (my beloved PC lost her battle with cancer)
In my `annual' gyn exam, my doc was concerned about my neuropathy and arranged a referral to a rheumatologist (one who dx'd Fibro - not a person I want to see ever again - another story).
I also had strange rashes on my chest, a small oval ring and a handful of small oval pink/brownish raised things. Nothing itched or hurt - a dermatologist was suggested for an ointment. I did neither.
I had an appointment with a new primary care physician. I needed someone local because my husband and I had decided it was time to go to Cleveland Clinic or Johns Hopkins for a thorough workup.
Within 10 minutes, my new doc said she thought I had mercury toxicity and Lyme disease - ordered the Western Blot, etc. I thought she was nuts but shelled out the money for the test. (25 years in NH and I knew about lyme, I tested neg before my MS dx.)
I elected aggressive treatment and saw an ILADS master angel. I was strong enough to begin IV abx in Jan '07. I was declared `critically and devastatingly ill', but was still trying to function.
When I joined this board to learn more about this thing, I couldn't type, form a complete thought or read a complete sentence. Walking was a challenge, I couldn't follow the plot to a movie, etc. You get the idea.
I pulsed and rotated IV abx, added orals, did various detox therapies, took fistfuls of supplements, read, talked, learned, relearned and started to sleep.
I had amazing support from my husband - not so much from my kids, none from anyone else in my family. Few of my friends contacted me, no one from work - the Plague?
I was critically ill with multiple neurological infections, home on IV abx and no one even brought a casserole! Fortunately, none of that sunk in until recently or I would have been very bummed.
Politely said, I am not real anxious to start up relations with my family. I don't think anyone is prepared for this unexpected alienation.
My PICC line was removed in late August of this year. I added more oral abx in addition to those I was already taking. Just this month I started a `maintenance' regime. Next I need to add more exercise and balance the NMH that developed (improving daily). I will do all that I can not to relapse.
I still take fistfuls of supplements, stick to a Candida free lifestyle, less all of the meat and now add low glycemic fruit, tons of probios, aggressive detox therapies, etc. Still no Tylenol.
In my case, MS was a symptom of Lyme and company. I didn't search for another diagnosis - it found me and for that I am forever grateful. Truly an answer to a very desperate prayer of a year ago. (btw I am also fighting Babesia and Bartonella and other unnamed that are covered with the protocol spread.)
It sounds like you have the right questions in front of you. I strongly encourage you to seek an ILADS doctor for your Lyme and coinfections diagnosis/treatment. If you don't have Lyme, he will tell you. What about seeing a LL neuro? I think there is one in Connecticut - I'm sure Betty G will know.
This is worth everything you have to figure out and direct your energies in the appropriate direction, which ever that may be for you.
Please take Betty G's offer to help with a good doctor. And please send a PM to me if you would like to know who helped me.
Ah - maybe take some of the information from this forum regarding Western Blot interpretation to you MS doc - good stuff in the thread tacked to the top of Medical `Dr C's Western Plot Explanation'
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