LymeNet Flash: 8 Weeks of treatment-still no improvement? Can't figure this out

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»	LymeNet Flash » Questions and Discussion » Medical Questions » 8 Weeks of treatment-still no improvement? Can't figure this out

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Topic: 8 Weeks of treatment-still no improvement? Can't figure this out

celtic
Member
Member # 15850

posted

I've been in treatment for 8 weeks. My doctor is treating me clinically for lyme after a negative test through igenex (activity on 5 bands-igm).

I've been on 200mg of Minocycline for the entire 8 weeks.

Last week my doctor added 600mg of Omnicef. I started taking it one week ago yesterday.

I'm feeling super exhausted and unwell.

I don't know why I'm not getting better. I did have maybe 15% improvement but it's all gone now.

I'm also taking colloidal silver but I think I'm going to stop it.

I'm so discouraged. Also feeling more depressed.

I don't know what else to do. Doc is testing me for babesia through igenex but he isn't treating me for it.

I could use some encouragement, help, anything...

Posts: 65 | From CA | Registered: Jun 2008 | IP: Logged |

dg0207
Member
Member # 15623

posted

Do you have thrush?

Consider Candida.

DG

Posts: 69 | From New York State | Registered: May 2008 | IP: Logged |

feelfit
Frequent Contributor (1K+ posts)
Member # 12770

posted

celtic,

Don't worry. In the grand scheme of things, 8 weeks is nothing. It is not unusual to feel much worse when treatment begins (and you are still a babe in treatment land) before you begin to feel better.

You'll get there. What you are experiencing is mostly normal.....Sorry, there is no quick fix yet.

Hang in there ,
Feelfit

Posts: 3975 | From usa | Registered: Aug 2007 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

It's also normal to cycle through better/worse/better/worse.

The Bb give off toxins when they die causing a worsening of symptoms or sometimes new symptoms. That's known as a Jarisch-Herxheimer Reaction.

Try to keep track on a calendar of when you feel worse & when you feel better. You should observe a pattern and that should help to ease your mind a bit. The "worse" should get less severe & the "better" should increase a bit each cycle.

8 weeks does seem like a long time for lab results. I would think that if you had tested positive for Babesia, the LLMD would have called to change your treatment.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

celtic
Member
Member # 15850

posted

Thanks for the replies. It helps.

dg0207-I don't have thrush but I have white coating on my tongue and it burns a little. I'm taking Nystatin but it hasn't helped it much. Does this mean candida? I've wondered about that.

feelfit (I like that name and miss the days when I was really fit)-I guess I am a babe in this treatment. I'm reading through posts and realize 8 weeks isn't very long. I'd just hoped for more improvement by now (so did my doctor which didn't help matters any).

AliG-I have noticed that around every 4 weeks I feel especially worse. My doctor just had my blood tested for babesia on Monday. I won't know for another 10 days.

Do others have an increase in depression/anxiety as part of their herx?

I think I have the neurob type. I just took a bath with epsom salts and was trying to read Buhner's book Healing Lyme.

My brain is fried. Will that ever get better?

Sorry for the pitiful posts. I'm trying to stay off the pity poty. It's hard when I get so discouraged. I lose all perspective.

Posts: 65 | From CA | Registered: Jun 2008 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

HOORAY! Bb cycles run every 4-6 weeks. Sounds like you're Herxin'. [Smile]

If you know you're killing them off, I think it makes it easier to take feeling like dung. At least you know it's for a good reason.

Lyme can cause the anxiety/depression. Bart can also cause some major anxiety. I'd say that, if it seems to be following in time with the cycle, it's likely just your Lyme.

I like "Holy Basil" (aka-Tulsi (an herb)) to help deal with depression. I found that I can just take it when I'm really down & then stop without issue. I don't like the side effects/withdrawal symptoms of Antidepressants.

My LLMD had recommended that book to me. he said that some people find relief from some symptoms with the herbs. I found the first part very interesting.

I wished I had read it before I struggled through trying to read all those scientific studies myself. I'm sure it would have been MUCH easier. [Roll Eyes]

Drink plenty of water (good w/lemon) to help flush out the toxins. That might help you feel a bit better. I found the Epsom salt baths to be helpful too. [Smile]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

Tracy9
Frequent Contributor (1K+ posts)
Member # 7521

posted

4 years of treatment. Still no better. Can't figure this out.

[Razz]

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

Tracy,

Did you test for mycolplasmas & viruses?

[confused]

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

White on your tongue????/

Diflucan & up your probiotics. Stay away from sugar & watch your carbs. Don't feed the wee-yeasties. [Wink]

Keep the probiotics 2-3 hours away from the antibiotics or else the ABX will fight the proBX, instead of the Bb.

[hi]

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

-

Eight weeks really is a very short time to expect improvement if this was chronic before treatment began.

If you have any sort of vertigo, the minocycline can be a factor - taking vitamin B-6 might help.

-

About the silver - a break from it might be good. Some brands are better than others, too. For me, one brand is nearly toxic while another was very helpful. Still, it can be hard on the liver. It's a mixed bag so see if a break from it helps.

-

Also, are you taking some liver support?

Your liver has a lot of stress with all this, so that can also cause fatigue and many other symptoms. Gentle support, gentle sweating, gentle movement can help the body work out the byproducts/toxins.

Water. water. water.

If the liver is stressed, depression is a result.

Vitamins and magnesium and fish oils can help.

This can get better. It's not just killing the infection, but it's a long process of rebuilding nearly every cell of your body. That's a huge job and it takes time and care.

Best of luck, now.

==================

www.ilads.org ILADS - see the treatment guidelines in regard to timeline.

==================

this book will offer you hope and practical solutions:

http://tinyurl.com/6lq3pb (through Amazon)

The Lyme Disease Solution (Paperback)
by Kenneth B. Singleton (Author), James A. Duke (Foreword)

You can read more about it here and see 9 customer reviews.

-

Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

celtic
Member
Member # 15850

posted

Tracy9-that's really depressing. Like AliG said have you been tested for other stuff? I don't think I'd last 4 years like this.

AliG-difulcan? I'll call my doctor on Monday. Where is a good place to buy "Holy Basil"? I think I should look into Bart. I had a huge weird surge of anxiety right around when I started getting more sick. I get a lot of anxiety for no reason.

I just had a huge glass water with fresh lemon from a friend's tree. Thanks for your help!

keebler-Thank you for your reply. It too was really helpful and put things into perspective. I'm going to take a break from the silver.

I am taking Milk Thistle every day for my liver.

I don't think I'm drinking enough water so I'm going to increase that. I'm going to check out the links you posted. Thank you.

Posts: 65 | From CA | Registered: Jun 2008 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

-

Holy Basil (Tulsi) can be good but it also can lower thyroid function.

It is calming, though, and that is very nice.

Sometime ago, I did a search on it.

PubMed may have some.

One Earth Herbal Sourcebook, too.

I'll come back later with some links.

-

Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

The health food stores around here usually carry it or can order it. You could probably order it online.

Thanks for posting the link to that book, Keebler. It looks like a good read. I'll have to check it out. [Smile]

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

Tracy9
Frequent Contributor (1K+ posts)
Member # 7521

posted

yes, Ali, they did show up positive in IGG as past infections, but not current; EBV. mycoplasmas, etc.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005 | IP: Logged |

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