posted
I have chronic Lyme and have been treated for several years with the same antibiotics. Lately, I've been extremely tired, so tired that it reminds me of the fatigue I experienced just before I was diagnosed. The doctor who used to treat me has retired (Dr. Shun Ling), and my family doctor, although she believes I have chronic Lyme, is pretty clueless. I also have bipolar disorder (separate from the Lyme), and have been experiencing a lot of stress -- loss of mother last May, difficulties with daughter-in-law in June, terminal illness of father-in-law (who is living with us, along with my mother-in-law and is on hospice care now). Also, my daughter, who is also showing signs of Bipolar disorder lives with us, along with her one year-old daughter, who I babysit one day a week. I also have a 19 year-old daughter who is doing OK, but has a diagnosis of major, recurrent depression. But she's going to community college and doing well. I've been trying to walk for exercise 4 times per week, but my knees and hips are so sore afterward, and now, I'm just too tired. I'm sleeping up to 12-14 hours a day, similar to just before I was diagnosed. I take minocycline every day and zithromax, 5 days on, 5 days off. I can't take Biaxin, as it messes with my moods, as a person with Bipolar. Am I just under too much stress? Oh, did I mention that my Bipolar meds cause significant weight gain and sugar and carb cravings? I feel pretty hopeless right now, as far as ever feeling healthy again. I'm 48 years old, but feel 70! Any suggestions? Thanks. SMatsumoto
-------------------- SMatsumoto Posts: 4 | From Riverside,CA | Registered: Oct 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
i am so sorry to hear of your suffering.I am 19 years with lyme-47 years old going on feel like 80 too.I empathize with you. Sometimes when I am on a heavy load ABX I experience horrible fatique.I am told by my LLD this is a herx recation.It wasnt' untill I started to do one week on and two weeks off .This helped .I wasn.t, herxing all the time and I think this gave my immune systom time to re-bound.If you want to talk further you can e-ail me because i found something that works for energy or me.But its persoal. Hang in here and try to stay posative dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Hi-
Well your stress level is sure up there and could be causing you to have poor quality sleep triggering some of your symptoms.
Also, how about yeast. I know some of the symptoms can be the same as lyme and since you are already on abx you could be at risk for an overgrowth.
I was on abx for 27 months and found relief from recurring sysmptoms with farther restricting my sugar and wheat intake and treating myself with oil of oregano for about a week. I did this about every 4-6 weeks as I felt the need.
Now my llmd has me off abx and on diflucan for two months. He now feels that getting rid of yeast may hold the key to ridding the body of the little bits of genetic material found on lyme patients.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I totally agree with Mlkeen.the two times I was so tired it was from multi systemic yeast infections, form my ABX. It was a profound shakie I feel sick all over really bad nausea.It can really knock ya down hard and I don,t meean the usual lyme thing I mean completely bedridden. The diflucnan I took for two weeks, I felt huge improvemnt. Take Care dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi SMatsumoto. Welcome. Sorry you are feeling like a zombie. I am like that myself. I haven't been treating for years, like you...just four months. I keep expecting to be better already. :-) However, I can hardly stay awake throughout the afternoon and am caught falling asleep sitting upright frequently! Occasionally I am perilously close to falling asleep driving and it's not even dark yet!
A med my LLMD gave me recently was a great help. It is called "Provigil." Frightfully expensive and insurance may not cover it as it's only approved by Blue Cross for narcolepsy. I take 100 mgs. in afternoon to keep me more or less vertical. Get some free samples from your doc to see if it will help. It does not make you feel "speedy" or really any different (at least I don't).
I don't know whether the tiredness ever goes away. I have a lot of brain lesions and it may be part of the healing process. I hope it gets better, though, since I do not see anything in my office that looks like a cot. :-)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
yeast.
yeast can effect the cns too. might want to look into flucanazole- it crosses the bbb.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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posted
Hi, all, Thank you all so much for your suggestions! There are a lot of things that could be causing the fatigue, but I'm going to go after the yeast. A BIG problem I have is that I also have Bipolar disorder and one of the meds for that causes severe cravings for sugar and carbs (the bad kind). Hard, just by will-power, to stay away from those foods! The seroquel (that's the medication that causes these cravings) is absolutely neccessary to my staying stable emotionally, and I've tried other "weight neutral" meds that have not been effective or else I've been allergic to them. Any idea for dealing with the cravings for sugar and carbs, then, since those contribute to the yeast problem? Also, the person who had the personal thing to share with me: I'd love to hear it. How do I get your e-mail address? I'm new to all of this. Thanks again.
-------------------- SMatsumoto Posts: 4 | From Riverside,CA | Registered: Oct 2005
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posted
Agree with yeast. Yeast is such a viscious circle. It causes inflammation which predisposes bacterial infections so Dr.'s give antibiotics which cause more yeast. (I'm NOT anti-antibiotics, there is a time they are needed and I've been on my share.)
Read "The Yeast Connection" by Dr. Crook.
ALSO, my LLMD has a protocol for hormones, tailored to your needs, based on lab results. A 24 hour urine test determines this. Homone therapy helps with energy and stamina if you're not already doing something with them.
Bug
-------------------- Every experience God gives us, every person He puts in our lives, is the perfect preparation for a future only He can see....Corrie Ten Boom Posts: 343 | From Northcentral Iowa | Registered: May 2005
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liz28
Unregistered
posted
The yeast argument makes a lot of sense. And are you completely sure you don't have babesia?
Also, I recently started taking CoQ10 and some other supplements in order to keep up with a busy work schedule. If you get a good brand (try to find it in gelatin capsules, not powder form), it's like jet fuel.
The other really helpful energy supplements have been cordyceps, flaxseed oil, and phosphatidylcholine.
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posted
This is a very interesting topic and to me very timely. Our son tested + on 4 bands IgM WB (Immunosciences)including p41 last spring. We have been on Biaxin over the summer and 9 weeks ago began IV rocephin. We just re-tested w a new WB as I was concerned about coinfections (which test active as we know). Here is what has me stumped. The test came back negative on every band w coinfections also negative. However I don't think I have ever seen him more fatigued. Suggestions? We are waiting on Candida and CMV tests.
Posts: 10 | From Scituate, MA USA | Registered: Apr 2005
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bettyg
Unregistered
posted
quote:Originally posted by SMatsumoto: Also, the person who had the personal thing to share with me: I'd love to hear it. How do I get your e-mail address? I'm new to all of this. Thanks again.
Smasu..., That was DANA; look for her post, and then look for the envelope with 2 people standing together...it will show a PERSONAL MESSAGE.
Click on there with HER NICKNAME SHOWN, and you can send a PRIVATE message that only she sees and websmasters IF they chose to read these.
Here is other info for you, please read about having SHORT paragraphs vs. LONG paragraphs for us chronic lymies so we can try to read/comprehend..thanks!
Welcome to this 24/7 educational & support group board, www.lymenet.org ! Here's TREEPATROL's and TINCUP'S combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this. Treepatrol constantly adds new links as they become available from the members here.
print & read Dr. B's (a lyme literate MD) info first; you will come back to this often.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
Some guidelines from Betty/others on using this message board:
* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.
* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.
* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.
* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.
* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!
* Also, we have ``lyme'' disease; not lymes... We are ``lymies''.
posted
Again, Thank you all for your suggetions. I do take several supplements, recommended on Dr. Burrascano's website, Lymenet.org. I will read up on yeast. I am sure I don't have babiesia (sp?). I was tested for that and errlichia. Could be I'm tired, too, from so many stressors in my life right now, as well as a delayed grief response to my mother's death last May. I know grief can really tire you out. Thanks, all. Sheri
-------------------- SMatsumoto Posts: 4 | From Riverside,CA | Registered: Oct 2005
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