posted
My daughter is 20 years old and she has been being treated for the last 3 years for lyme,babs,bart, she has been seeing Dr J she has been on so many meds, zith & rifampin, bicillin shots, levaquin, IV for 9 months, zith & mepron and Art,her current protocol is amoxicillian, zith, mepron, tindamax twice a week, she woke up this morning and can't move her arms and her legs hurt so much she was screaming, she says her arms and legs and hands and feet are numb,she can't uncross her arms. I really am at wits end, I am taking her to see Dr R and am really hoping he has some good ideas, she does have a pcp who tries to help manage her pain, but nothing touches her sometimes she takes 3 different pain meds,and nothing is helping her, has anyone ever experience such a reaction to tindamax, she was bad but death would be easier, and believe me that is not an easy thing to say but I don't think she can beat this DAMN DISEASE!!! and I have watched her suffer since she was 12
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am so sorry for the suffering she is going through. I hope you can find answers with the new doctor.
I don't have much to offer in the way of ideas to help. I used DL Methionine and that helped my pain from tendonitis. Alpha lipoic acid is good for neuropathy along with B12 and magnesium but I am sure you have tried all the supplements. The product I used first was called Rapid Response. My pain was gone the first night but it was pain from damage from the drug, not the bacteria at work.
I tried to make my own version and methionine seemed to be the amino acid that helped me the most. It is a precursor to SAM-e and glutathione, both of which are also good for pain and healing so you might try those instead - if you haven't already. Hyaluronic acid replaces collagen in joints, eyes and skin and is another important part of keeping myself comfortable as possible.
I was amazed when some extreme arm pain I had was almost immediately eliminated when I took Diflucan. Maybe the pain I had was related to yeast.
Diflucan is thought to drive the cysts out like tindamax does. It works better against yeast than anything else I know of and severe candida can cause similar symptoms to lyme. So maybe you could try it for a while instead. It is hard on the liver though so you have to be careful.
I sure wish kids did not have to suffer. It breaks your heart. My son, who is 22 was just diagnosed with type 1 diabetes and he is scared. So am I. I know you are too. Hang in there.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Needless to say this is heartbreaking and i am so sorry. When my head, chest and pelvis went numb 9 yrs ago, I didn't know what to think. the IV rocephin I was given helped some, but the only things that helped were the salt/c protocol and antiparasitic herbs.
Numbness is on the symptom list for parasites. Google parasite symptoms. There can be a co-infection of Filarial worms that is being sorely overlooked except by Dr. K. He treats ALL of his patients for parasites and worms first.
I never would have guessed that's what I had until I did these treatments and EVERYTHING on the lymephotos site came pouring out of me. It took several months for them to let go. PLEASE consider this as a possibility and check out
-------------------- 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
I couldn't take tindamax .... I took it one week per month for four months and it would take me from feeling pretty well to staying in bed most of the time.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Tindamax is usually better tolerated than flagyl, which can cause very dramatic results. This is why some docs suggest starting with very small doses, tiny, and working up gradually.
Maybe you could try this. Shave those pills into very small pieces.
What she is experiencing is apparently a very bad herx.
Posts: 8430 | From Not available | Registered: Oct 2000
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Mrs. Scampi,
So sorry to hear this...have you considered incorporating alternative testing or therapies for her? Perhaps locating a LLND? We were with Dr. J for 2 years but moved to herbs after my kids started plateauing on the abx and started having GI issues from the abx. The herbs have been successful for us so far.
We have been significantly helped by electrodermal screening, which can incredibly tell you which infections you have (and at what levels) and can see which medicines you are allergic to and which meds actually work on your infections. It has been very helpful for us. Even if you can't find a practitioner who does this, you might find someone who can muscle test you. Perhaps Dr. K's office in Washington has some recommendations. Or perhaps you can try getting in to see Dr. K himself?
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
This is probably due to the tindamax. Hubby ended up in the ER and was in the hospital for an entire week back in July after trying tindamax for 2 days.
I finally convinced his docs to put him on IV Rocephin and then a new neuro added in IV Zithromax after a couple of months.
On his own hubby restarted the tindamax after a couple of weeks on the Rocephin and by adding a quarter of a pill every 4 or 5 days he worked up to the suggested 2 pills daily. He has been on a couple of different schedules of pulsing the tindamax.
His hospitalization was due to severe dystonia, myoclonus and dry heaves. He shakes so hard he can't move or speak during his bad episodes.
But the good news is that he is actually feeling better than he has felt during the entire 10 years since he got sick. He has gone downhill a little during the last month and thinks the babs or bart is trying to come back and we will be repeating a Clongen bloodslide in a couple of weeks and making some med adjustments.
He also ended up in the ER the last time he tried tindamax in the fall of 2009 -- that time one dose of IV Levaquin in the hospital got him back on track.
So sorry for your daughter. Hopefully hubby's story will give you some hope.
Bea Seibert
Hubby suggested she try alinia instead of tindamax. Supposedly that med is a combo of low dose flagyl and a 2nd ingredient. Hubby took that for 8 months -- 4 months at half dose and 4 months at full dose. Do think it can be somewhat beneficial for babs.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I am older but was very sick and am still being treated. I also see Dr. R. and am also seeing someone else to help with pain. He has a different view of lyme-more holistic-my pain level was at about a 15 from a scale of 1 to 10 and after treatment (accupunture, scar therapy, kmt therapy) it has gotten better. He also uses muscle testing which is awesome
I will pm you the name if you need it
Hugs and prayers
Posts: 298 | From usa | Registered: Aug 2009
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posted
Hi, Is your daughters pain is long standing you may look into RSD which is Reflex Sympathetic Dystrophy, which can be caused by infections such as Lyme. Grace
Posts: 113 | Registered: Jun 2002
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
There is a girl who has spent the last yr. in Mexico for her treatment...And she is finally better!
There could be a time and a place when a different path is needed.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I read that the heliobacter pylori can cause this acute things.85 % of the people have the heliobacter and it suddenly can cause Guillian Barr Syndrom. You get weak and even paralyzed and it is damgerous. I had one of these bad episodes years ago.
The zithromax with the tinda is part of the cpn protocol and I have read that one of these persons needed a wheelchair after starting treatment. Maybe she has to be tested for chlamydia pneumonia if she is not getting better. It comes very often together with lyme.
Also the parasites can cause this.
Have you ever looked into viruses?
Posts: 1834 | From US | Registered: Oct 2008
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