posted
I was diagnosed with MS, and recently diagnosed as having Lyme disease (positive western blot).
Is anyone being treated with antibiotics, IV or oral treatments for Lyme and/or MS?
And also if you are being treated with antibiotics, which doctor do you have - Neurologist, Lyme Doctor, General Practitioner?
Also, is your treatment covered by your Insurance?
Please let me know and thanks for your help,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
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posted
Your MS could very well be caused by your Lyme!
I am on antibiotics along with supplements to build my immune system.
I see an LLMD (Lyme literate MD) for all my treatment. He has also treated me for heavy metal toxicity, coinfections, and bacterial dysbiosis. They are well-versed on all that goes along with Lyme.
My meds are covered by my insurance.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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What antibiotic are you on? Is it IV treatment? as I just started IV Rocephin treatment.
I also see a LLMD in Michigan which also had me do a heavy metals test, have not got the results yet. He has also recommended 3 different supplements which I have not started.
As for the heavy metal toxicity, coinfections, and bacterial dysbiosis. How were you treated for these?
Please let me know as much as you can.
Thanks,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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posted
To clarify, I only see a LLMD at this point.
Posts: 40 | From Michigan | Registered: Aug 2007
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sixgoofykids
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I am on oral abx. Currently - Levaquin (Bartonella), Amoxicillin/Probenecid, and Plaquenil. I'm on Malarone for Babesia, was on Mepron/Biaxin for 8 months until last week for the babs.
I take Nystatin to prevent yeast problems and Cholestyramine to absorb toxins.
If my cognitive issues don't clear up with Bart treatment (just started bart treatment last week), then I'll be going on IV in January.
I was toxic in lead (took care of mercury years ago), so am using Detoxamin, NAC, and Alpha Lipoic Acid. You want to do heavy metal treatment under the supervision of your MD, even though you can buy this stuff without prescription.
For bacterial dysbiosis, I am using oil of oregano, uva ursi, and plant tannins along with probiotics (Theralac, Ultra Flora, and VSL#3).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I too am on Nystatin for Candida, is this similar to bacterial dysbiosis?
I too am on Amoxicillin with Florastor (probiotic) for a sinus infection. The IV Rocephin treatment is for my Lyme Disease and the LLMD said this will be covered by insurance being I have a positive Western Blot, but I am paying a co-pay everytime I go in for treatments which I do not think is right as when I was on IV steroids with the Neurologist I did not pay every time I went for treatments.
Is the Detoxamin, NAC, and Alpha Lipoic Acid you take for lead only? does this cost you or is this covered by your insurance?
The reason I am asking some cost and insurance questions is that I am running low on funds due to all of the Neurologist testing, deductables, co-pays etc.... with my insurance.
Please let me know, I appreciate all your help,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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sixgoofykids
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My bacterial dysbiosis is an overgrowth of Klebsiella and Citrobacter, and not enough of the beneficial bacteria, so it's a different problem than candida.
The heavy metal treatment I'm on is not covered by insurance. It's a weak protocol because lead is easier to detox than mercury, it will chelate the mercury, too, but usually something stronger is used for mercury.
Don't you have a PICC line for the IV? I don't know much about that since I haven't been down that road yet.
Are you on a cyst buster? Typically people are put on cyst busters along with the Rocephin.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Wow. IV steroids sound scary with Lyme.
I have been on antibiotics (oral) since last Oct. following a Lyme diagnosis.
posted
They ask if I wanted the PICC line but I said no as I have a good vein on my right arm but maybe a good idea due to the fact they want me to do this treatment 4 days a week. I do not know if poking the same spot over and over is good.
I am not on anything else at this point aside from the meds I stated but I do recall somebody else mentioned this cyst buster thing before, I do not remember what these were??? maybe I should say something to the doctor??? but I have only had a few treatments.
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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sixgoofykids
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Borrelia can be in three forms. My LLMD has had me on three different meds for the three different forms.
Typically on IV Rocephin, a person is on a cyst buster so that the borrelia can't just hide from the Rocephin by changing forms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I was taking steroids when I was diagnosed with MS, then recently I was diagnosed with Lyme Disease and I just started IV Rocephin treatment.
Sounds like you have been/are on a lot of stuff. As my LLMD seems to be pushing supplements and homeopathic medicines on me (which I am reluctant to take), is this typical with Lyme doctors or the Lyme disease treatment in general, or can it be just treated with the antibiotics etc...
Let me know your thoughts.
Thanks,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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sixgoofykids
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posted
It's not like curing strep throat where you just take abx and you're done.
You need to rebuild your immune system, too. So it's a bit of everything -- meds, supplements, diet, exercise, detox, sleep, etc.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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You are saying the Borrelia (the actual Lyme) can be in 3 forms, which I am only taking Rocephin for. Is Rocephin and this cyst buster enough to kill all three?
Also, I am not sure about coinfections, but the doctor did mention getting a test for that later. Does this sound right?
Thanks again,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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sixgoofykids
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Rob, I don't know how it works with IV. I know with orals we've gone after all three forms. I've always been on 2 diff. abx and a cyst buster. That way the borrelia can't hide.
From what I've heard, it's important to be on a cyst buster with the Rocephin.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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You mentioned diet and detox, do you not eat fruit, sugar, bread, all kinds of drinks including alcohol etc...? as my doctor mentioned a diet like this that is extremely not for me.
Also, I take flaxseed which seems to be OK.
What do you do for diet, detox etc....
Thanks,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Welcome Savage Rob*)_*!) !
I was on IV Rocephin 9 months- the first 6 with no real changes= then miracles and life again as I had once known it to be- normal life, that miraculous thing we miss so much when it is gone!*)!*)!!
WELCOME*)!*! !*)!*)!*!)!
We've had a bunch of MSers in the area and all have done well- just stick with your LLMD and give it time!*)!*)! Rocephin is CHEAP now- when I was on it years back it was still on patent by Roche and it cost A LOT! We took out a second mortgage for $50,000 cash and it was worth every penny for me. I could no longer walk normally. SO my insurance didn't pay for it- I saw a LLMD- a Lyme doc, bless him, he saved my life. I had progressive weakness, progressive numbness, slurring, chorea in my left hand and lots of other horrid symptoms which are all gone today.
Thank goodness*)*!)!! Welcome again*)!*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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sixgoofykids
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I drink no alcohol (yes, it's not easy). I eat no sugar. I do eat whole fruit, but not juice. I usually restrict myself to berries as they're low in sugar.
I eat no yeast or simple carbs. I do eat brown rice and potatoes (technically a simple carb).
There are threads on diet and detox that would be beneficial to you.
The thing is, once you're chronic, this disease has imbedded itself into your whole body and you have to do all you can to give your body what it needs to be able fight it off.
You should read the Dr. B guidelines -- www.ilads.org -- go to the diagnostic and treatment guidelines. Dr. B explains it all better than I am able.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I guess I am wondering why my doctor has not put me on a cyst buster and I am figuring how to deal with that.
Lyme was brought to my attention from my previous family doctor back in Mass. where I lived all my life, he said through my family if I was diagnosed with MS to make sure they rule out Lyme Disease, then I got in touch with the Michigan (where I now live) Lyme Disease Association. Then It seemed to make sense, the rash, the symptoms, the story, and the rest is history.
Tell your friend the story I heard from the President of the Lyme disease Association - She was diagnosed with MS and spent 6 years declining with all kinds of problems including seizures and ending up in a wheelchair. She had lessions in her brain and back. She seeked out other oppinions and help as she wanted to get better and she ended up at a doctor that tested her for Lyme and the rest is history for her. She got treatment and now she is rollerblading and as she puts it - Got her life back.
Also, my Neurologist agreed that Lyme disease can mimic MS.
So I say, how can anyone diagnosed with MS not want to rule this Lyme Disease out.
Hope this Helps.
Thanks,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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dmc
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Member # 5102
posted
people can't say this enough...MS is NOT a disease but a symptom. Got lesions got MS. There is a cause or trigger.
Lyme is a common cause. Herpes virus, chylmedia pneumonia can trigger, heavy metals, all stay in the body if not treated and weaken the immune system.
So stick with the LLMD. Steroids give the spirochetes a party atmosphere. Only use them in an absolute emergency.
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