posted
We believe my father-in-law has late dissseminated Lymes. He just quit a multitude of psych meds and they did find a doctor who would at least agree to prescribe 6 weeks of PO doxycycline for his "underlying bronchitis" and see if it helps the "Lymes" symptoms. The live in Northwest Wisconsin, a hot spot for Lymes country. What antibiotic therapy have you seen effective for late Lymes? What helps best to prevent the thrush/GI upset/gastritis etc?? Has anyone worked with the Marshfield Clinic in WI for Lymes treatment??
Thanks for the help!
Posts: 21 | Registered: Jun 2003
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I believe that this is a good drug for LD. But the dose needs to be sufficient - at least 400-600 mg per day. Many doctors have tendency to prescribe doses much lower such as 1x100 mg or 2x200mg. The low doses are inefective for Lyme disease.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
I just finished up 2 months of 400 mg of doxy for late disseminated Lyme (along w/other abx). My LLMD uses it to begin with because it catches many of the other coinfections that come along w/lyme, but in late disseminated it is doubtful that doxy alone is going to be enough for treatment.
I believe I was infected in WI as well (Apple River). I was doing Doxy, L.A. Bicillin, and Tinidazole up until last weekend (in late lyme you need a cyst busting drug like Flagyl or Tinidazole). This is because Lyme has 3 forms, the spirochete (which doxy can be effective against), the cell wall deficient (L-form), and the cyst form.
Now I'm doing Mepron, Zithromax, Tinidazole, and L.A. Bicillin. In late disseminated Lyme some will say that IV abx. (like Rocephin) are the best way to go, and I may be doing that soon.
I guess it all depends on the symptoms, how long one has had it, and what your LLMD recommends. People here can help you find a good LLMD to guide you through, but in the meantime keep asking questions
Best wishes,
jloisu
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
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posted
Thanks for the input so far. My father-in-law was infected back in 1996. He presented w/ Bell's Palsy and had high levels in his serum tests at that time. He was treated with 6 weeks of IV Rocephin and was called cured. In 2001 he had slow, but progressive personality changes, emotional instability, signs of significant mania, than depression, then recessed into a zombi like state, rocking on his bed. He had significant paranoia and was sure everything was poisening him. He was finally hospitalized voluntarily, given all sorts of test including a spinal tap, which read positive for 3 band (I'm not which ones.) The blood work was only processed at Quest laboratories. After a second infectious disease opinion who said he was cured of Lymes and this was all psych, they opted for an endless stream of psych meds and now he is just giving up. All he eats is ice cream and freezie-pops.
I will find out the dosage of doxycycline he is on. He does not have a LLMD, nor are they pursueing one at this point. They are being somewhat treated by a local family practice physician.
We shall see...
Posts: 21 | Registered: Jun 2003
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
I have had lymes babs for 20 years-
I have been taking doxi for 2 years--
It has helped alot--Dose needs to be high- 500-600 a day to work- low dose dose little-
Do low carb diet and take lots of probiotics--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
How does low carb help? (Do the spirochete flourish in a sugar rich environment??) And what kind of pro-biotics? ( I don't know that I could get them to take any, I'm trying to get them to at least take acidophilus to help his gut.)
I'm going to look around this site a little more. I remember a place where you can request info on doctors.
posted
Sorry, I forgot to add, you've had Lymes for 20 years??? Is there really a "cure"??? Or, when a person is dealing with late stage, disseminate disease, is it more of a diseas management process??
Posts: 21 | Registered: Jun 2003
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posted
Wow...I'm so sorry to hear that his ID DUCK [as in quack, quack] decided he was cured....way too early. What a horrible thing! and it happens everyday in this country, over and over and over.
If your father-in-law will eat nothing but sugary foods, then acidophilus won't do him much good. The low carb diet is followed by most on low-term abx because the yeast is fed by the sugar.
there are many drs who say that Bb is also fed by sugar....so there are two good reasons not to eat simple carbs and sugar!
I would NOT recommend ANY "clinic" for LYME disease treatment, except for one up East...Columbia. There are plenty of very good LLMD's in the US....but I don't know of any in WI/
I THINK there is one, however. Hopefully, you will find that out over in Seeking a Doctor.
Many of us here have had Lyme for years. For most, it wasn't dxd until many years later. I have had it for at least 46 yrs. I was dxd 5 yrs ago. [I'm doing well and am off abx right now.]
Thanks for being a good daughter-in-law! It's going to be a long road to recovery, but he can do it!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Mathias
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Member # 5298
posted
Sounds like a relapse. Take the doxycycline and run to the nearest LLMD. Late stage disease is far worse than what he was originally treated for.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
Yeah...I was "cured" once too. The first LD infection I noticed was about 15 years ago. At that time I did Amoxicillin for 10 days and was called good to go.
It never occurred to me that all of the illness I suffered for the next 14 years was actually LD until someone pointed me in the direction of a CDC document on Late Stage LD. Then I found these guys, etc. Thanks to the advice I've gotten here I'm finally starting to feel good again.
I'm seeing an ID in KC. He's had me on 400mg of Doxy/day for about 10 months now, along with Benicar and some occasional Flagyl. He's also pushed me/helped me to get my hormone problems treated as well. Funny thing...my insurance has been pretty helpful as well. Just thought I'd toss that in, as I know that's not usually how it works.
Anyway, listen up and read those posts. Folks here can be very helpful. I'm kind of curious though. Has anyone done an MRI of his brain? If he's really that effected by the LD, I'd think there'd probably be some sign of it on an MRI.
Good luck!
Posts: 67 | From Kansas City, MO | Registered: Sep 2004
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
MRI many times is normal. Sometimes is not.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
I had 12 year misdiagnosed infection. Once I was got the lyme diagnosis I was started on doxy.
I stayed on it for 7 months straight and saw improvement. Then I moved on to other abx combos: biaxin/omnicef for 7 mos, flagyl/zithromax for 10 months, now bicillin la. I feel better than I have in years and am continuing to make progress.
I'm being treated by a well known llmd with an excellent track record. This is key.
In addition to the other tips already given, I would add thay you get on a paleolithic type diet, meaning no processed foods including dairy and grains. I would stick with fresh organic veges and lean animal protein, nuts and seeds (if not allergic) and little fruit. It makes a real difference for me.
Posts: 925 | From California | Registered: Sep 2004
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posted
Thanks for all the ongoing advice. Sorry it took so many days to get back on line!! I will explore the many links and get more updated information. I was contacted by the gentleman from WI and have forwarded my in-laws the doctor information. My father-in-law is only on 100mg of doxycycline a day...I know this is next to nothing for Lymes treatment. I will check into his MRI results, he did have one several years ago. I recall them saying something about small vessel and small white matter changes and briefly considered an early alzheimers DX, but that fell by the wayside because his symptoms just didn't fit that picture. I'm disgusted by the lack of informed and competent medical providers, especially in Lyme's infested areas! And you would think that insurance companies would be all over Lyme's to support very aggressive and ealy treatment, along with more research since it is so clear that this is an extremely chronic, and often devastating disease, not to mention very, very costly!! I'll continue researching and thanks again for the insight!
Posts: 21 | Registered: Jun 2003
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posted
there is no scientific evidence that oral doxycycline is effective in treating neuroborelliosis caused by strains of Bb s.s.
Although NIAIDS has squelched research into the effectiveness of doxy in treating neuroborelliosis in a primate model, it has been published that doxy is ineffective in eradicating spirochetes in dogs and ponies experimentally infected with Bb s.s., proven by culture and PCR.
Late disseminated lyme disease means neuroborelliosis. It means the immune system has been compromised. Doxy achieves good concentrations in the brain, but it is bacteriostatic. Your father in law most likely needs IV treatment. Combination of drugs. Otherwise he'll be on and off doxy forever. And he might be on IV for a long time, but the treatment will likely be more effective.
see a good LLMD.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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