RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Please don't bash me for the long post. I have no where else to turn. Some is a repeat of what I have said before about my history, etc. If you don't want to waste your time reading, then simpy move on.
I started abx 6 weeks after my bite. I have been given one abx at a time. I felt completely well for 2 months, and all has been downhill since. I have now been on abx for 10 months. Bite was end of May 2009.
I have battled yeast the entire time. I just completed 30 days of diflucan 3 weeks ago, but my tongue remains white.
I also started Tindamax a month ago and experienced a herx last week that is just now feeling better. This is the first time I have been given a cyst buster.
For the past 12 days, I have been on a very strict anti-yeast diet. I am still taking two diflucan pills per week. I feel worse than ever. My stomach is on fire and upset. Is this from yeast die off or the Tindmax herx?
Ok...this is where is gets hairy. I saw another doctor for a second opinion. She thinks lyme could be gone and I am dealing with yeast. She said I should just stop all abx and stay off if symptoms do not come back. I am too scared because I have never taken a cyst buster until now. I have been taking Tindamax 250mg three times daily for a month along with Biaxin. How long would I need to stay on this dose just to be safe?
My current symptoms are sore feet, ribs, and hips and stopped up ears. Also for the past week, I feel like my whole body is just sick...hard to explain. My stomach is on fire and I feel nausea and have neuropathy in arms and feet.
My plan is to take the cyst buster just to be safe and then get off abx for at least a month and see what happens. I am scared because of co-infections. My LLMD said I did not have them because I started treatment so soon and the Biaxin would have taken care of them. I did beg to try Rifampin and think I had a herx, but never improved after 5 weeks and stopped to treat yeast. My LabCorp bart and babs tests were negative.
I am only asking for opinions. I know the final decision will be up to me. I just feel so uneducated and lost. Even though I have been dealing with this for 10 months, I still feel so new at it.
My big question is how long do I need to stay on daily Tindamax?
If I relapse because of co-infections, will they be more difficult to treat down the road?
I am really losing the will to fight. I feel like I have been running in circles.
I am so thankful for all of you. I don't know what I would do without this forum.
Again, I apologize for the lengthy post.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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WildCondor
Unregistered
posted
Jennie,
I am happy to help you, its very sad state of affairs here on LN that you feel you have been attacked here and will be bashed for telling your story! This is SUPPOSED to be a safe place to gain support and understanding!
You can always email me or pm if you need help or have questions. I cannot speak for the others.
From what it looks like, the Diflucan could be causing your stomach pain and upset, that is a hard med to take especially 2x per day. The Tindamax is also very hard on the gut, so both of them combined I would imagine you feel awful.
Did you feel any better after the month of Diflucan?
The neuropathy can be a side effect of the tindamax, so that might be the one to stop taking. I would let your doctor know you are having the neuropathy for sure. Usually when you get something like that you should stop all meds then add them back one at a time to see what is causing what.
Maybe you can try a different approach to your treatment. Follow the yeast diet, stay on Diflucan (maybe a lower dose and take it with lots of food) and try something like Bicillin injections which bypass the GI system for the most part. They work great for Lyme.
The sore feet could be bartonella, or yeast, not sure, but you definitely have treatment options and its good that you are asking questions. Always ask questions, then sort out the answers you get and ask your doctor more educated questions, and eventually you will get results.
posted
You said nothing about probotics. Has your doctor recommended you take any?
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by Troup Brazelton: You said nothing about probotics. Has your doctor recommended you take any?
I take VSL #3 DS (prescription). I take 1/2 packet AM & 1/2 PM for a total of 900 billion.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Wild Condor,
Thank you for all your help.
I only take Diflucan two times a week now, not daily.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have very, very similar symptoms. I have treated (nearly) 4 years.
Stomach issues were H.pylori - common in LD patients get tested. H.pylori has returned twice and for me, it makes ALL other symptoms so much worse, you don't realize it until it is gone.
Neuropathy can be either or both Bartonella and Lyme. Bart was more cognitive issues for me though. After Bart was gone, the neuropathy remained in "cycles" and Bicillin IM knocked it out for me while on the shots, but returned if I stopped them.
Cyst busters amped the neuropathy ten-fold and I had to forget them altogether. Other abx also worsened neuropathy and I do not believe increased nueropathic pain is herxing it is pure (side effects) irritation to the nervous system in my opinion.
Bicillin IM injections (for lyme) and Biaxin (for Bart) help a lot. But if you do have h.pylori, it needs to be treated w/Amoxi/Biaxin/Prevacid (or another PPI, i.e., prilosec, nexium, etc.) for a few weeks or longer really.
Just what seems to have worked for me the best for these symptoms.
posted
Hey Jenn, Not sure if you're already doing this, but I'd recommend taking Florastor probiotic as well as VSL #3 to prevent Cdiff. Florastor is a yeast-based probiotic... it is a good yeast that inhibits the growth of bad yeast. Pretty important throughout treatment and beyond, according to my Dr.
Stomach burning/upset sounds more like the meds irritating you stomach. Was it a symptom you had prior to treatment? In my experience, the feeling of my stomach on fire was always med related.
Hope you feel better soon!
Posts: 108 | From Raleigh, NC | Registered: Apr 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Treating for parasites and worms is very important. Check the symptom list at Humaworm. Also do a search on lymenet for parasites and Lyme.
PLEASE don't ignore this very important aspect in getting rid of this disease.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Hi jennie46, Have you tried nystatin for the yeast?
I don't have info to share other than this bec I'm relatively new at this--7 months treatment. I do want to say, I share your frustration, sorrow, and confusion. It's very hard to keep going but please don't give up.
The one thing I might say, is that I've heard nausea is the body's way of saying enough, when pills etc are involved.
Maybe you have some depression working on you? I know I do! It makes the battle harder. Just another way lyme and co break you down, disrupting brain functioning.
Anyway, lots of hugs. NEVER STOP asking questions. Don't pay attention to jerks. PM me any time. Posts: 702 | From North Eastern USA | Registered: Dec 2009
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