O.K. I've been treated aggressively for 10 years. Not possible to stop treatment for the shortest time without becoming completely bed ridden.
All medications now causing kidney and liver sever pain, blood in urine, absence of urination.
Diagnosis: Babesia microti and ducani Lyme disease Eptsein Barr Brucella exposure Chlamydia from tick bite Hypothyroidism Low growth hormone
Off all medications now here in Switzerland and doctor trying to see the babesia on a blood smear. He recognizes that looking for antibodies at this point is worthless.
But he is EXTREMELY surprised to find NO elevation in white blood cell count even while I'm shuddering with a fever of 103! There is no sign in my blood work that my body is fighting an infection. WE still are waiting for the smear results.
I need any and all of you to send me links explaining why white blood cells and other signs of infection might now show up in late stage, chronic disease lyme/babesia.
I'm too sick to sit here for days and hours trying to find this, but I know it is out there.
PLease help me. I would be ever so grateful.
Mary in Switzerland.
Posted by payne (Member # 26248) on :
mary - God Bless you with an answer soon, we understand your distress in health. please find the strenght to endure all symptoms - may your fever produce a good outcome towards recovery.. i to have been told - youre not fighting an infection according to lab reports, and the sweat was pouring off me like a waterfall. be strong.
Posted by lymewreck36 (Member # 4395) on :
I can't go on like this. My body is done with medicine, and it is done with me.
Thank you for your kind words. Mary
Posted by n.northernlights (Member # 17934) on :
Hang on here, please!
I have no answers besides that lyme lowers your immune response. That would cause the white blood cells to not be elevated.
just think of all the people posting on lyme forums before they are diagnosed, the doctors do not find any signs of infection and tell them they are not infected with anything.
Posted by dogmom2 (Member # 23822) on :
mary, prayers for answers and healing for you.
Posted by lymewreck36 (Member # 4395) on :
There are no answers. I believe I am a the end of the line.
mary
Posted by Haley (Member # 22008) on :
I suggest you get a urine culture (not the regular UA) and possibly the 24 hour urine test they do (I forget the name). It seems that you may have an additional infection. I got that when treating Babesia.
You can also do a search on some of Bea Seiberts more recent posts where her hubby developed additional infections.
I have had that happen and did not have an elevated WBC.
Posted by sixgoofykids (Member # 11141) on :
Mary, have you tried the Bionic treatment in Germany? You're so close. I flew over there from the US for it.
Posted by BoxerMom (Member # 25251) on :
Good heavens! What are your kidney values? Do you have a bladder infection?
You must treat the acute infections. You may have an acute bladder and/or kidney infection. (I think I already said that...)
Then you can resume treatment for chronic infections. Babesia is very hard on the internal organs. The infected red blood cells sequester in the small capillaries that supply blood and oxygen to the organs. And a Babesia relapse can be fast and aggessive.
Erlichia/anaplasma is very hard on the kidneys, too. You didn't list that one, but I'm sure many of us have infections that nobody has found.
Fever can be Babesia or acute infection. Your doc needs to do some rule in/rule out and treat you. Why is s/he looking for the Babesia that you know you have?! Most of it is not "free floating" in the blood, anyway.
Posted by seibertneurolyme (Member # 6416) on :
The one infection I do not see listed that could explain a lot is bartonella or BLO. Until hubby treated his bartonella or mycoplasma or whatever the bacteria was that was seen on multiple bloodslides by both F lab and Clongen he actually had a borderline low red and white blood cell count. The bartonella or whatever was suppressing his immune system.
Since that infection is gone he has moved on to more aggressive babesia treatment. Treated the bart or BLO or whatever for about 2 1/2 years. The factive and high dose rifampin finally did the trick. Bloodslides went from numerous coccobacilli to several to none (clean bloodslide in December of 2010).
On 3/25/11 Steve ended up with a temp of 105.8 rectally (from a 2 week trial of IV flagyl in addition to other babs meds) and has had 3 other fevers over 102 in the last 10 weeks. 2 times he had posiitve blood cultures for serratia marcescens (there are no antibody tests for this bacteria). Twice the cultures were negative.
Dr K the microbiologist at Clongen has a theory. He thinks that the aggressive babesia treatment killed off enough red blood cells to release the serratia into the bloodstream. Hubby has had the PICC line replaced 2 times during all of this and the one time it was tested it was negative for bacteria.
No one can say for sure where or when hubby got the serratia bacteria. It is common in hospitals and also could be acquired from procedures such as endoscopies or catheters. His WBC has gone up and down from week to week and even from day to day -- had never been elevated in the 10 years he has been sick until the fevers started.
Finally today his WBC was at 7.3 which we think is a very good sign. Hubby finally talked his LLMD into putting him on cipro for a month. He had already done 2 or 3 ten day courses of antibiotics for the serratia but it kept coming back. I also found some herbs that seem to be working on the bacteria.
Hubby is still running low grade fevers of 99.5 or so daily, but we think this is due to babesia treatment now.
We just sent off new bloodslides today to a different lab to see what shows up.
Boneset tincture can help with fevers. It really makes hubby sweat but seems to keep his temp below 100. I give him 7 - 10 drops 4 times per day. Started at 15 drops 4 times daily for the first 3 days and then decreased to 12 drops 4 times daily for a week or so. It can be given more frequently if needed. I use Natures Answer brand which is a 1:1 formulation.
If you have not done so then I would also suggest you see a Chinese herbalist. The herbs that seem to be helping hubby is a formula developed for lyme but it is labeled as "Clear Toxic Heat." I ordered it over the internet, but we are actually waiting for some other herbs to come from China that the herbalist we saw ordered specifically for hubby based on our appointment last week.
My research found that the herb coptis was supposed to be effective against serratia and fortunately I had the Clear Toxic Heat pills in my stash of things to try. But I didn't think of it until after 4 ER and hospital visits unfortunately.
The bloodslide done at Clongen is a wet mount. That could show something different than a traditional bloodsmear that is done for malaria or babesia.
Hubby always has his bloodwork done at our local hospital outpatient lab. They actually made an extra bloodslide today for themselves and want to compare that to the pictures we are supposed to get back from the Parasitology Center lab.
Hope you can get this figured out soon. Hubby's neuro symptoms have improved greatly from babesia treatment, but the fevers have complicated treatment and slowed that down somewhat.
We just switched up babesia meds and it is obvious that the red blood cell parasites are not gone. Hubby has a high antibody titer to babesia duncani, but Clongen has seen 2 other different unidentified protozoa in his blood at 2 different points in time.
Good luck and keep looking. It really sounds like there is a missing piece of the puzzle you have not found yet.
Bea Seibert
P.S. The first and highest fever of 105.8 rectally hubby had a normal WBC and his blood cultures were negative. Still don;t know if that was simply from a massive babesia dieoff or what.
Posted by Haley (Member # 22008) on :
Bea
What tests did you ask for at Clongen lab? Is that the lab that you prefer?
I'm seeing my doc tomorrow and thought about asking to be tested there but not sure what type of test to ask for.
Thanks
[ 06-29-2011, 07:10 PM: Message edited by: Haley ]
Posted by lymewreck36 (Member # 4395) on :
Hey, I might as well tell you guys the following history:
1996 � extremely ill, left job at university � erroneously diagnosed with Fibromyalgia - surprise pregnancy
1997 - daughter 4 months gestation diagnoses with multicyctic kidneys Diagnosis confirmed after biopsy. Pregnancy completed 35 weeks.
1998 - fourth pregnancy. Normal
2000 - collapse a few weeks after strenuous gardening. Lyme Elisa run. One band positive. Told I had a negative test after the Elisa. Western Blot never run.
The period between 2000 and 2002 full of neurological problems, profound fatigue, body severe pain, sensation of face sagging (sensory palsy), profound sleep disorder, limb numbness��.severe sweating�.continue to be told I had FMS.
2002 - heavy gardening, then collapse completely. Strange circular rash on my back while on vacation. Rash expands and disappears over the weeks on vacation in July. When I went to the doctor in August, I eventually remembered that I had had the rash in the summer while on vacation. Doctor decides I am �seeking a diagnosis� and views my rash report with skepticism. My mother notarized a report of what she viewed on my back, and doctor said that it �might help my case.� All the while we ran repeated lyme titers that were rising quickly each time. Even after a test of 1.09, I am told the test is negative and I am having FMS symptoms, despite full facial palsy (motor) swollen joints, destroyed nervous system, sweating, profound fatigue, dizziness, soar throat, ringing in my ears, cognitive dysfunction, short term memory loss��
November 2002, sought second opinion of infectious disease doc at hospital. He runs a Babesia test which comes out positive. (insanely high titer!!) He then agrees that I have seronegative lyme disease and recommends treatment. (And when I retrieved my files, on the top page was a positive lyme test run through the hospital !!) Go back to rheumatologist who withdraws treatment after 3 week period. While on antibiotics, all symptoms continued to improve, after withdrawn, backslide rapidly.
December, started treatment with a lyme literate medical doctor (llmd). Treatment continues today. Withdrawing medication throws me back into the acute disease state.
2003 - December 3, break out in extreme fever, 103, middle of the night. Fear an autoimmune disease. Appointment with Rheumy three weeks later. All tests negative. Symptoms at that time.
Drying of mucos membranes!!!!! Reduced urination!!!
Symptoms withdraw after dropping medications for 3 days. It was hypothesized that babesia medications were at too high a dose.
2004 - February. Severe reaction to Cipro and Levaquin. Places where tendons attach to bones in severe pain. Achilles tendons hot and red. Nervous system damage. 2 � of physical therapy and detox to recover.
2006 - Severe reaction to Flagyl. Burning feet, palms of hands, severe low back pain, black stools. Burning if feet remains today.
Diabetes medication needs adjusting. Stop Flagyl. Much later replace it with Tinidazole.
Start having severe low back pain. Taking morphine back pain so severe. See GI doc who does colonoscopy. Diverticulosis in sigmoid colon.
Had a bladder lift, hysterectomy, and bowel prolapse repair. I am told that my uterus is supposed to be 16 ounces. Mine was five pounds, low slung, and resting at the base of my spine on top of a bundle of nerves.
2007 - Begin to notice that I urinate less, lower medication doses and urinate out 8 -10 pounds.
2009 � �syndrome� begins. Plaquenil appears to be the culprit for time being. While on Plaquenil, ever so gradually grew a problem: swollen lymph nodes to the point of keeping me awake at night, loss of urination, and sometimes spells of brownish urine. Severe low back pain. Drying of mucus membranes, constipation.
Have rheumy run autoimmune blood work and appear positive for lupus. Further investigation suggests drug induced lupus. I had the SS DNA, not he DS DNA test results. Final diagnosis is �mixed autoimmune response� after taking medications for infections.
2010 � December. One dose of Rifampin wrecks havoc, extreme pain, in bladder. Dark urine. Extreme bladder and kidney pain. Loss of urination. Takes a week to function somewhat normally again after stopping rifampin.
2011, - May. Same �syndrome� that has been developing to medications, drying mucus membranes, swollen lymph nodes, etc., but now include blood in urine, some protein in urine, pain in upper right quandrant of body, under ribs..Liver area. Kidney pain. Bladder pain.
Gradually, any medication or combination of medications taken at doses near high enough to keep lyme/babesia symptoms low enough to function kicks off syndrome. Even trying to add in prozac a few months ago set off the same set of adverse side effects.
All indications are that if I drop the lyme/babs medications, �syndrome� disappears, but lyme and co-infections are chronic and virulent. In a matter of days without the antibiotics and malaria meds, I�m completely bed ridden from those illnesses.
Add in any medications and have reduced or NO urine, blood in the urine, kidney/liver/bladder pain, drying of mucus membranes.....
Did five treatments of bionic 880 2 summers ago...a long post exists on this forum from that time....I kept a record of my experience on lymenet.
I'm a total mess.
Mary
[ 06-30-2011, 02:29 AM: Message edited by: lymewreck36 ]
Posted by lymewreck36 (Member # 4395) on :
Hi Bea:
Thank you for your long post. I need to read that a few times and think upon it.
Mary
Posted by lymewreck36 (Member # 4395) on :
I should also say that after all of this, I am very, very overweight, and I don't know how much that is also affecting liver function/pain.
Could the actual toxins be causing the problem, the disease, the medications, all of the above?
I feel like I am going completely mad.
Posted by BoxerMom (Member # 25251) on :
It's about using antibiotics to treat autoimmune conditions. The forum isn't as good as Lymenet (THAT doesn't sound objective), but people there are constantly being diagnosed with Lyme. They also have autoimmune conditions that need to be managed and treated.
The chronic inflammation from Lyme and co-infections seems to turn on genes for autoimmunity. So, yes, when you herx your inflammation rises due to the die-off, and autoimmune symptoms get worse.
People on this forum have been where you are. Many opt for low dose antibiotics and antimalarials to prevent the horrible herxes but still chip away at the infections.
I hope someone who has done this will chime in.
Much love, BoxerMom
Posted by Lymetoo (Member # 743) on :
lymewreck .. Do you realize your name is posted there??
Posted by seibertneurolyme (Member # 6416) on :
Mary,
Babesia can definitely cause blood in the urine, but it sounds like there is more than that going on with you.
Not really sure what your doc was treating with the cipro and levaquin and rifampin -- usually those meds are for bartonella or mycoplasma which are not listed on your list of infections.
Anyway, it sounds like you may need to back up and punt as the saying goes. If I were you I would try very low dose artemisinin or even just the whole herb artemisia or some of the newer herbs for babesia -- maybe cryptolepis or the Byron White or New Directions formulas.
Or maybe go another route and use the old standby of quinine and clindamycin.
I think at this point you need to see if the babesia treatment is really the triggering factor for the bladder issues or not.
But I would only do 7 or 10 day cycles of babesia meds to start. If you have a high infectious load it might stress your body too much to do high dose meds.
I would also take supportive things like uva ursi and nettle leaf and maybe cranberry extract to mitigate bladder issues. And definitely milk thistle for the liver.
I would also try lactoferrin to help keep iron from the babesia parasites.
If you have swollen lymph nodes then you need to try something like red root or maybe even something more aggressive like poke root or cleavers for lymph drainage. Massage could also be helpful -- especially lymphatic massage.
I really think a herbalist could help deal with the side effects of meds and killing herbs.
Constipation is also not good -- will increase your toxic load. It almost sounds like there is some involvement of your nerves that control bodily functions. If you have severe babesia it not only robs the good fats but it especially likes phosphatidylcholine. That is the fat which coats the nerves and porotects the myelin and also is involved in peristalsis.
Hubby supplements with phoschol which is an oral liquid form of phsophatidylcholine. It is expensive, but I do think it is one of the reasons he has had so little actual nerve pain and peripheral neuropathy. He has a hard time absorbing fats so I give him ox bile supplements with meals.
The phoschol he uses is from the source below. He says it tastes like burnt motor oil, but he does think it is helpful. If we run out then in a couple of months he will ask me to reorder so I know it must be helping him.
The way I see it you have just a few choices -- give up and stop all treatment, just concentrate on the babs for a couple of months, and either treat babs low dose for a long time or try short cycles of high dose treatment with lots of detox and herbal support. If using herbs then I personally do not think there is a high chance of the parasite developing resistance.
You could try short courses of some of the newer babesia meds such as daraprim or coartem to see if babs is really a major issue. Malarone or larium are other possibilities.
Mepron and bactrim and plaquenil are not the only choices for babesia.
Let us know if anything shows on your bloodslides.
Bea Seibert
This is not medical advice, just my opinion based on hubby's experiences.
Posted by seibertneurolyme (Member # 6416) on :
Haley,
Yes, we do prefer the Clongen lab. But their tests have gotten more expensive. Just print out the test requisition form from the lab website. The bloodsmear or bloodslide is not listed on the form. Just write it in at the bottom. Last time we did the test it cost $195 -- used to be only $100. And looking at the website recently it looks like ther may be an additional charge for test kits. Just call the lab with any questions -- they will mail test kits to patients. Just have your doc sign the test request and mail that with the kit you will get in the mail.
We decided to use the other lab this time as it is cheaper -- test is $105 to examine 3 bloodsmears plus the cost of the kit. Plus you get a picture of your bloodslides which is not available from Clongen. Hoping that if something is found that maybe a different lab can do an ID either by visual exam or DNA sequencing.
If we had the money I would also like to do the F lab test to see if hubby has the new parasite, but that test is around $500. Need those dollars for treatment.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Mary,
One other suggestion -- have you ever treated for hypercoagulation? Since going on high dose babesia treatment hubby has increased his lubrokinase from 2 capsules per day to 6 capsules per day. He is also adding back resveratrol and the herb danshen to help with bloodflow to the smaller capillaries.
If you are killing off red blood cells with babesia treatment then these supplements will help keep the lymph system from getting clogged up.
Bea Seibert
Posted by Robin123 (Member # 9197) on :
What about playing around with some other kinds of healing treatments?
For example, anti-inflammatories like mangosteen juice, noni juice, grapeseed extract capsules, bromelain, turmeric, etc - this is a category to reduce inflammation.
Also, mangosteen juice can prevent constipation.
Detox with a FIR sauna tent.
Use a PEMF machine - pulsed electromagnetic machine - we hold a coil while it clicks away with magnetic pulses - this restore the body's electromagnetic energy which gets reduced by illness. Chiropractors and physical therapists can have them.
Since I am not a doctor and don't know what to say about the specifics of your symptoms, I am thinking about things to do that could strengthen your body anyway.
Posted by Haley (Member # 22008) on :
Thanks Bea.
Please post your thoughts on the new lab when you get the results.
Posted by lymewreck36 (Member # 4395) on :
Oh, thanks lymetoo. I removed my name!!!! more replies coming.