posted
I have done a lot of reading here, including following up on the suggestion of searching for Mepron Buddies.
What I am trying to find out is whether or not, after 11 1/2 weeks of Mepron/Zith I should be starting to feel a bit better. Because I am not. I am feeling still so much worse than before I started.
I am taking 1 tsp twice daily of Mepron and 250 mgs twice daily of Zithro. My peripheral neuropathy pain and fatigue are worse than before I started. I am still having hot sweats, and my A.D.D. is not improved. I am getting so tired of this and loosing confidence.
There is absolutely nothing I can think of that is better from taking that combo. (though I have had a couple of not-too-bad days)
The LLMD that I see is in BC and I am in Manitoba, and he has not answered my last 2 emails.
Prior to the Mepron/zith I was on Ketek/Tinidazole for 8 months and made great progress, and now I feel like I have lost it all and then some.
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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I am sorry you are feeling this way. All I can say right now is "I know how you feel." I feel like I am worse now on Mepron & Zith than I have been in a long time. I just don't know..... am I really gaining ground? It's so hard to tell.
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi Jeannie, I did the Mepron combo also(used Biaxin, then Ketek, not zith) - and it took a long, long time for me to feel I was making progress, so just hang in there, and give it time to work.
After about 6 months, I improved enough to try going off, but relapsed within a few months. I'm just finishing another 6 months of Malarone/Zith.
If you feel it would be helpful, you could discuss adding artemisinin with your LLMD at your next appt.
I know this isn't terribly helpful, just wanted to let you know that it took me a long time also.
I hope both you and bigmamma are feeling better soon, and having more good days.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Jeannie -All -
Depending on how long you have been sick it can take along time to get feeling better-
Make SURE to take mepron with Greasy food- it make a Huge differance in effect--
From my reasearch taking Artemisinin is a -- Must--
Google -- WHO Artemisinin- good info there-
Drink Lots of water or tea-2 gallons aday-
I think tea is Best --
If you are not drinking a glass of something right now you are not drinking enough
Realize almost everyone gets worse before they get better- Thats how it has been for me too--Ouch--
Some folks make large progress when they first start taking meds- then progress can slow down- thats what happend with me also--
One thing I did that really helped me with babs is to drink Tonic Water-- it has a small amount of Quinine in it-
You can get it at most grociery stores- (by the beer)
Drink at least 1 qt aday or more- will make you herx--dose me--
One thing that I think is Important for babs is to take meds Conteniously- Dont stop--
Every time I stopped taking meds I lost ground- (I stoped because of supply reasons)
It is Super Important to keep a -- Positive Attitude --
Also realize that you are Lucky to have figured out what is wrong with you and you are being treated--
I figure there are MANY thousands of people out there how have No idea what is wrong with them- and or cant get treatment-
When you look at it that way -- We are ALL perty Lucky--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
You may want to check in with your llmd. My llmd expects to see some improvement of things within 2-3 week with patients taking mepron and zith. Maybe not a huge improvement and maybe not steady, but improvement.
For me mepron is like magic medicine. If anyone ever tries to take it away I will fight them for it. It make me sleep and heal.
If it doesn't help you let your LLMD know it may not be the right med for you.
Wishing you the best! Posts: 663 | From NH USA | Registered: Sep 2004
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posted
Thank you bigmamma, cactus, groovey2 and achey for responding to my message. I will look up artemisinin and learn what that is about, I have heard of it. Drinking tonic water is another good idea.
My dx was a clinical one only, so I have no proof positive that I have babesiosis, but with the huge herxing thing going on it seems likely. I can't imagine what else can cause these hot sweats. My TSH is low (.89) and hyperthyroidism can also cause hot sweats, and my estrogen is high for someone 10 years into menopause, so maybe those things need to be looked into more.
Cactus and groovey2, did you feel any kind of improvement after 3 months, or was it still mostly bad herxing? I do drink a lot of water each day, but no where near 2 gallons, probably 3 quarts. I will up my water and tea intake.
Groovey2 I really appreciate your 'look on the bright side' comments, and usually I am a glass is half full person, but lately this has been getting me down, especially since I see no improvement after all this time.
Thanks for the reminder of how much farther along the road I am now than I was 2 years ago even if I do feel lousy!
Jeannie
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Jeannie
I did feel better in just a few days- But I was Super Sick-- I could not even sit in a chair-walk ect.
I did not herx for about 6 months -- then BAM --OUCH--Lasted 4 long months-- then lessened to just Real Tired --
I am still herxing on and off--6 months but most of the time I feel perty good --
Babs is a Really Tuff bug-- I think it caused 80% of my symptoms- The Herxes are Bad -
It is Very Important that you take Art - helps prevent relaps --
You have to attack babs from every direction --
As far as DX goes- My tests came back IND (IgenX)
I have Zero doubt that I have Lyme-Babs--
I had a perfect Bullseye weeks before I started getting sick --
Clenical DX is most accurate--
Jeannie Check your tempature several times aday- Low temp is symptom of Babs --
Post a Full List of your symptoms -- -give details-be complete --
Doing this will increase accuracy in replys to questions ect --
Yep its Tuff not to get down--
The way I look at it is - Every Pill I take and Every Herx I endure gets me that much closer to getting My Life Back --
Jeannie Read my post on music -- Small thing Add UP --
I am feeling Much Better- You Will Too --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Jay, good writing like a melody. I like your style. Write more and happy holiday to all.
Dave
Posts: 1078 | From Fairland | Registered: Apr 2006
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WildCondor
Unregistered
posted
Its possible that your doses are not high enough. You can do 3-4 teaspoons of mepron per day and 1200 of Zithromax plus artemesia. If you are not responding you might ask your doc about ramping up the dose. Remember to have mepron with fatty foods so it is absorbed! Good luck!
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posted
Wow, thanks so much for these responses, and yes, Grovey2 music soothes me, my mind and my ringing ears. It sounds like you were much worse off than me. I can still function around the house, though am unable to work anymore
My body temperature is always low. I took it three times a day for a week and it got as low as 95.36 and only once got as high as 98.2
irregular heart beats (PVCs - this was my first noticeable symptoms - very hard pounding PVCs)
motion sickness worsened - can't watch an action movie esp on the big screen
Hot sweats
fatigue can only function for short periods of time between rests.
Depression
unable to deal with stress/crowds/noise
no libido
right knee and hip pain and tightness
use meds for sleep aid
itchy almost all the time
fidgety have trouble relaxing unless on high doses of pain meds
brain zaps (occasionally)esp when trying to fall asleep- almost like a halucinegenic show
dry eyes, floaters,
mouth sores, rawness, cankers
Actually one thing that has changed in the last week is my normally burning hot hands and feet are not quite cold, and hard to warm up.
Lucky for me I had this list in a file to retrieve, I have a lot of trouble remembering much of anything. It always takes a while to write messages, and understand what I have just read.
LIke everyone else I used to be a busy functioning person with a brain and a body and a life. It would be great to get part of it back.
Thanks so much for listening and giving me advice.
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Jeannie
How long have you been sick?
Discribe the sweats better? is there any time of day there worse?
Itchy - Discribe the Rash- Feeling Picture if possiable -
Do symptoms come and go or mostly constant--
Why did doctor change meds? explain--
The symptoms of babs and the other co infections are very similar to each other-
The ones that stand out in Babs are- drenching sweats- usually worse at night--
Low Body temp--
Crazy Heart beats--
Hard to breath-- some people--
Itchy rash --some people
Ringing in ears-sometimes-
Joint Pain -Bad--
Twitches --
Stiff Neck-
Like with All of these illnesses -- the symptoms Can and Will Change threw time--
The- Symptoms List -you wrote is very good- I Wish Everyone would do this--
Fill in some details --
Like -- only at night -pain moves- time-
results from meds -amounts -time
Results of tests -- if any --
To Me - the symptoms you have listed so far sounds like you are headed in the right direction --
Maybe you should try the Groovy2 Babs test-
Get some Tonic water and drink it-- Maybe 2 Qts--in one day and see if you herx or have any reaction--
When I first drank tonic water it made me herx--Quickly 1 day or so --
Take care --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Thanks for continuing to offer help. Sorry I am so long getting back to you but my husband and I had to be out of town to a family funeral.
To answer your good questions:
My first noticeable symptoms started in June 2001. It started with severe pounding scary Premature Ventricular contractions and went downhill from there.
Sweats are like a furnace going on inside my body and I feel almost panicky-hot, my skin feels slightly damp and after a minute or 3 it stops. The only part of me that actually gets sweaty is my nose. I have never been one to sweat, just like my mother. I did go through menopause 10 years ago and the symptoms are similar, but a recent hormone level test showed my Estrogen high for someone menopausal, yet my FSH was right on for post menopause.
Some days there are more, I don't notice any time of day that is worse, it changes and I never wake up sweaty in the night.
I have no rash except for a few little clusters of red dots that recur between my shoulder blades and on my arm. These are very itchy. Mostly I am very itchy with no rash at all.I do have little round lesions, mostly on my legs, that might be psoriasis except it looks more like cracked wax that flakes off-
Symptoms come and go. My favorite saying is "This too shall pass"
Doctor changed flagyl to tinidazole because of continued Peripheral neuropathy. Later he changed from the Ketek/Tinidazole to Mepron/Azithromycin because although I was feeling so much better I was still getting those hot sweats/flushes/surges.
You said: "The ones that stand out in Babs are- drenching sweats- usually worse at night--" I don't have that, but like I said I never did sweat and that confuses things for me.
"Low Body temp--" Have that
"Crazy Heart beats--" Have that
"Hard to breath-- some people--"Have that occasionally
"Itchy rash --some people" Have that
"Ringing in ears-sometimes-" Have that in spades
"Joint Pain -Bad--" have that in hands/fingers, feet/toes and hips
"Twitches -- " Have that
"Stiff Neck-" Have that
Pain gets worse as day progresses. While on the Ketek/Tini I was able to take no pain meds at all.
Did not go the Igenex root, I wanted to save $ and go the "Do you herx?" root. Here in Canada there is only the Elisa test which came back negative. I did test low for Erlichiosis and Rocky Mountain. Also low for Epstein Barr.
TSH test was low .89
I feel like I was herxing almost the whole time I was on Mepron (three months) but didn't know for sure if it was herxing from Mepron or Azithromycin, or just plain getting sicker.
Yes, it does sound like I have Babesiosis, but the thing that holds me up is that I have had no improvement in the 3 months I was on Mepron.
I stopped taking it 5 days ago while on the funeral trip and I have been very sick the last 3 days. That could be the stress, the chocolate, or who knows what.
Would a person herx from Tonic water only if they have Babesiosis?
Thanks again Jay for your help.
Jeannie
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Jeannie
You do sound like you have Babs--
I had babs about 10 yrs before the night sweats started on me--
Once I got them the sweats are Drenching-- I mostly get them on upper body and head-
Babs takes Along time to deal with-- most folks have to take mepron zith Biaxian for a year or so --
I think you will herx on Tonic Water-- Try drinking 2 to 3 qts in one day and see what happens --
Tonic Water seems to help me as much or more than taking Quinine sulfate pills and TW dose not have the bad side effects of QS-Ringing ears-ear damage-
These illness effect folks in different ways- symptoms come and go and new ones pop up--
I did not have the breathing problems until I had been on babs treatment for about 6 months-- and so far it has not been real bad yet--
The tests for babs are as poor as the ones for Lyme--
Every test I have Ever taken says that Im Fine- so skipping tests in my opinon is not a big deal- Babs lyme test $500-Igenx--
Keep posting and Make Sure you put your symptoms list at the bottom of your posts until you are sure of your situation--
Hope this helps--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Today it was brought to my attention that Azithromycin can cause or worsen tinnitus. It got me wondering because my tinnitus has become so much worse since starting the Mepron/Zith so I did a google search and found a number of web pages that talk about zith causing tinnitus and hearing loss.
So, today I am stopping the zith because this ringing and plugged feeling in my ears is driving me a little bonky.
Thanks for your words about Babesiosis. The fact that you didn't sweat for ten years is useful information. I am waiting a call from my LLMD and maybe I will start back on the Mepron after all.
Jeannie
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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posted
Today I talked to my LLMD and after going over how I feel now compared to how I felt prior to the Mepron/Zith, he told me to stop the Mepron.
I stopped the Azithromycin yesterday when I found out it could be causing the worsening of my tinnitus.
I am going back on Ketek/Tinidazole which is what did so much good for me before the Mepron set back.
On Monday I will see my GP and hopefully start some investigation into what is causing these hot episodes/flashes.
Maybe it is Mepron, but I am ready to quit.
Thanks for your input.
Jeannie
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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posted
My LLMD told me to stop the Mepron/Azithromycin as I should have had signs of improvement by now.
I had stopped the Zith the day before when I read that it causes tinnitus and hearing loss. My tinnitus was so much worse the last couple of months.
Now I am back on Ketek and Tinidazole (Tindimax?) and still wondering about the peripheral neuropathy as I just read this morning on a number of med info sites that Tinidazole also causes PN. They say if you get tingling and numbness in your arms/hands/feet/legs you should see your doctor immediately!!!! Why didn't I know that and has it caused irreparable damage?
I am ready to stop all treatment now as these side effects are really getting me down.
Thanks for letting me rant. I wonder if anyone else experienced PN from their ABX and the PN went away after stopping the ABX.
Jeannie
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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posted
Just my 2 cents worth here. I never was placed on mepron (Thank God) but used malarone zith and art. We treated 2 28 day cycles in the begining of treatment. By the 2nd cycle I was feeling so much better.
That was 2 pills of malarone, 500mg of zith and a build up to 400mg of art per day. Wihtin the 28 day cycle, malarone and zith was only taken for 21 but zith for the full 28 days. Due to the half life of zith, I did take a break from it for a day here and there.
My Babs I knew was not completly gone but soo much better. I continued to pulse Art 4 days on 3 off on and off through the rest of my other infection treatment. I would target 3 weeks of this here and there. In the beggining the most Art I could take was 300 to 400 mg a day - major herxing.
By 20 month of overall treatment I did a couple of runs of art at 600mg to 1000mg a day, still pulsing 4 on 3 off, and was getting minimal herxing. then one final run with malarone, big herxing but have not seen any signs of babs since.
Posts: 582 | From milwaukee wi | Registered: May 2005
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posted
Hi! My name is Tom. I am new to this board.
I've had lyme disease for 5 years now. I'm on my 4th year of treatment. Each year I get a little better.
I have two co-infections; Bartonella and Babesia.
My blood tests for the co-infections did not go positive until 2.5 years into my treatment. And then not until after 5-months I.V. Rocephin.
The best I ever felt (in the last 5 years) was last summer after the first treatment for Babesia.
But my symptoms returned (and positive blood test for Babasia) in December.
I just started 6 months of Mepron and Zithromax treatment. My last treatment for Babasia was Mepron and Ketek. I started to herx with in the first 24hours. Mostly fatigue. On the 3rd day, major back and muscle pain. No night sweats yet.
If your interested here is a list of my initial symptoms and some other commentary. I wrote the list below in January of 2003, about 6 months before I was diagnosed for Lyme:
9/24/02 * feeling ill just prior to lunch * heart palpation and shortness of breath * Went to ER, nothing found, but referred to cardiologist and holter monitor to monitor heart
9/25/02 - 10/6/02 * flu like symptoms * nausea * night sweats * fatigue * tiredness * change in night vision (things have foggy tint) * agitation/nervousness * dizziness * numbness in left arm and leg 9/30/02 * received holter monitor
9/30/02 (11pm) * feeling very agitated * sweating profusely * dizziness * went to ER * suspected viral syndrome * PVC's 10/2/02 * saw cardiologist (Dr. xxxx) * No abnormal heart rhythm * PVC's * Schedules echo stress test in early Nov.
10/6/02 * started feeling better, flu like symptoms decrease
10/7-8/02 * feeling better, return to exercise
10/9/02 * flu like symptoms return
10/10/02 * Feeling very ill again. Call PCP, but told to call Cardiologist. Call Dr. xxxx office to explain symptoms, I was told it wasn't heart related.
10/11/02 (early am.) * feeling very ill * many hot flashes from head to toe * Muscle spasms in eyes * agitated * dizziness * sweating * ER * Nothing found
10/12/02 - 11/7/02 * flu like symptoms persist, however, intensity will very over a two-three day cycle * equilibrium is off too, walking feels strange and wobbly * ear starts ringing around 10/31 (tinnitus) 11/7/02 - see PCP, get blood tests 11/12/02 - see PCP for blood results, nothing found, diagnosis is anxiety, suggests taking medication 11/15/02 - stress echo at cardiologist (results inconclusive, schedules cardiolite test) 11/16/02 - blurry vision, body tremors develop 11/18/02 - vision develops many floaters/clouds, almost as if something precipitated in my eyes. 11/18/02 - decide to take anxiety medication (lexapro) 11/21/02 - bad reaction to lexapro, cease taking (tremors worsened) 11/26/02 - cardiolite test, heart is fine. 1/2/03 * general health has returned to normal * Ringing in right ear persists. Intensity and pitch will very from day to day. * Intermittent ringing in left ear, however, duration is generally short 30s to 1m. * Saw an ear doctor (Dr. xxxx) and found I have some asymmetric hearing loss * Had a MRI done to check for an acoustic tumor, none found. * Floaters in vision persist, but will very in cloudiness from day to day. * Developed sensitivity to light (eyes and skin?) * I had my eyes checked by an Ophthalmologist, nothing found. * Red rashes (?) appear on my body in various places. Sometimes I get red indented lines, as if I had been pressing down on the edge of something. My skin is very sensitive . * Muscle spasms in arms and legs * Pain on the back of my scalp for the past few weeks, feels like someone has been pulling my hair. * General aches in the joints of hands and legs * Dryness of skin on my hands * Still some numbness in my two of my fingers in my left hand * Occasional gel-like substance on eye-ball
After the initial flu-like illness sub-sided, neurological symptoms took hold. I experienced zap like sensations that would occur at short regular intervals (mostly in the morning when I awoke). My brain felt like it was constantly racing with thoughts. And my brain felt like it was constantly oscillating (kind of like a broken florescent light). Muscle twitching and spasms increased. Muscle tremors. Anxiety and panic attacks. Tinnitus. The Vitreous gels in both of my eye collapsed, resulting in floaters (not normal for a 37 year old with 20/20 vision). When I closed my eyes, instead of going black, light would flicker for several minutes. And sometimes images would freeze in place. Light sensitivity. Balance problems and hearing loss.
Like many of you. I saw many Doctors. No answers. They all suspected I had an anxiety disorder. I eventually bought into the anxiety diagnosis and started taking "Paxil" (an antidepressant). The "Paxil" experience was disastrous and resulted in me hitting my bottom with this disease.
By summer of 2003, I began to suspect Lyme disease. All my searches of the internet returned "Lyme" as a possible cause when I searched using my symptoms.
I believe I was bitten by a tick on a day hike at A�o Nuevo state park in California. The hike occurred about 6 weeks before my symptoms began.
I sought out a LLD and the lyme blood test was positive. I also had SPECT scan of my brain, which was also consistent with lyme. I did not recall a rash. However, overtime I did remember a rash that I thought was a ring-worm infection (but I can remember the date). I went to the ER three times when I first became ill; no one ever looked for a rash.
I continue to stay positive about getting over lyme-disease. If I was able to start my treatment from the beginnging again. I would insist on treatment for co-infections first, regardless of a positive/negative blood test. The first 2.5 years of treatment were somewhat negated by the fact that the co-infections were not treated.
Thanks for reading,
Tom G.
Posts: 1 | From San Jose CA | Registered: Jan 2007
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posted
Thank you for sharing that TomG. Sounds very similar to what I experienced before finding out what was going on. I was diagnosed 3 years ago. No treatment has had long term benefits for me, as of yet. Still hoping to find the right one.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
Thanks for your post Tom, it is always informative and interesting to read of other peoples experience with this Darned disease.
Although I share a lot of your experiences, I don't think I have Babesiosis, mainly because I never had sweats - just more like menopausal hot flashes and I had no sign of improvement in 3 months of treatment.
It is good to know that you are doing so well, despite the problems with Dx and then not being treated for your co-infections first.
We all could write books!
Hope you continue to improve and post about it here.
Jeannie
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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