I'm Bored's girlfriend, and I wrote for him. Bored has late stage lyme disease. He has been now on hospital couple of weeks. He was two days at home, but we needed to call an ambulance again cause of that pain. He can't move at all now. He has intense pain on his back and testis. He gets Doxy IV and strong painkiller. We don't have reason for that pain. Urology founds nothing and ultrasound shows that everything is okay. Back's MRI shows that there are little disks, but they don't make nerve weight. (But who knows?) He has symptoms of epididymitis but tests are okay. Could that be an inflammation on testis and also on back or on back's nerve/nervesystem? What antibiotic (/combination) would help that kind of inflammation (inflammation on nerve)? And because doctors found nothing, they behave nastily, and Bored is still very sick. Ultrasoud doctor said that lyme is grate imitator, what we should to do now on this imitator? I can't even watch those Bored's pain attacks, because they are so violent and wild. I became on shock, when I'm just looking at. Please, if someone has some experiences or ideas, tell me. I'm so tired, and I don't know what to do. Thank you for any help an input.

Bored's girlfriend,
Catherine

 

This is a tough one. Lyme is the great imitator. My LLMD said Lyme can cause epidymitis, prostatitis, etc. and abx treatment should help.

MRIs of the spine are subjective. They may look benign, yet not be indicative of the level of pain someone is in. If the MD doesn't see a ruptured disc or nerve compression, it's hard to tell the origin of specific symptoms. A Neurologist or Neurosurgeon would be the most adept at ruling out the symptoms as they relate to the spine.

A LLMD would be the next step, if possible. If not, an MD who would consult with a LLMD in Europe or the states would be an idea.

I hope Bored feels much better! He needs to get well so he can go to the Sweden Rock Festival this summer.

[This message has been edited by Lymelighter (edited 09 June 2004).]
 

I have pain down there too...the urethra...and in several others places...but, I keep forgetting...the pain is actually caused by the
infection at the base of my skull.

In other words.....sympathetic/peripheral nerve pain from the occipital lobe area of the brain.

This may very well be a Neurological Herheimer!!!!!!!!

Ice the back of his head and the top of his neck real good!!

GOSH....why didn't I think of this before?

Do you have Chiropractors over there?

Cranial Sacral Massage might also help.

Oh MY GOSH...I can't believe I didn't think of this before.

Trout
 

Bored game today to see the private professor urology, and he said immediately, that Bored has prostatitis and epididymitis. Urologists on our university hospital said that everything is okay. Professor urology said also, that on epididymitis were some kinds of ``callus'', or something. Bored will go on next Monday to clinical tests (cystoscopia and others), to make sure, that there is no cancer or something. He has also on next week ENMG; they try to find if there is something wrong on back's nerves.

Bored is now at home, and nurse bring IV doxy daily. Bored has still continuous pain and those violent pain attacks. We have to take a closer look to Marshall protocol. We have Burrascanos and ILAD:s guidelines. It is so much information to take a closer look... But it's a good thing.

Bored takes magnesium 350mg -700mg, what could be a good dosage? He started now saw palmetto and zink 50mg. We will take contact to cranial sacral massage or chiropractor after that ENMG.

Urologists on hospital said that there is "just pain" and gave lot of strong painkiller (morphine derivative). Yesterday one doctor said to me, that he don't believe that antibiotics could help Bored at all. I asked, that what help then, he said that he doesn't know. He clearly thought, that Bored imagine all those pains. Doctors are generally thinking here in Finland, that this kind of symptoms might be because of Post Lyme Syndrome, and that's why antibiotics will not help, and then ducks recommend strong painkillers, mood medicines and steroids.

We have no LLMD here in Finland, and our doctors will not consult, we have asked that so many times. We have to just try again. Have anyone information about names, phone numbers, addresses or e-mail addresses to take contact LLMD here in Europe? We have ID and neurology, which are okay, but they are not LLMD -ducks.

I'm just wondering, testis are on lower temperature than the other body, and a borrelia bacterium likes that... Maybe we have to demand that ducks take sample of epididymitis, tissue specimen? (There was that callus, cyst?) Could there be borrelia spirochete? Does anyone know if that could be possible?

Have anyone experiences or ideas, what antibiotic combination would help on this kind of situation? Bored is on doxy 200mg IV daily (have been already 14 days), but no help yet. Ducks have no ideas what could be good combination, does anyone? Maybe zithromax will help with doxy, any experiences? How doxy and biaxin works together? Bored has been on iv rocephin three weeks on year 2000, one month on year 2002 and one month on year 2003, and we believe that it have caused cysts, so that we don't want to take.

Thank for your any advises and input,
Bored's girlfriend,
Catherine

I have a phone number you can call that hopefully can help you find the nearest LLMD near you. Maybe they can help you in some other way, also.

Email me @ [email protected]

Jill

[This message has been edited by JillF (edited 10 June 2004).]
 

Have anyone else information about names, phone numbers, addresses or e-mail addresses to take contact LLMD here in Europe? We have ID and neurology, which are okay, but they are not LLMDoctors.

Have anyone experiences or ideas, what antibiotic combination would help on this kind of situation? Bored is on doxy 200mg IV daily (have been already 14 days), but no help yet. Maybe zithromax will help with doxy, any experiences? How doxy and biaxin works together?

Thank for your any advises and input,
Bored's girlfriend,
Catherine

This comes from a cancer hospital in Romania. Cancer and lyme both follow the glycolysis pathway (use sugar, not oxygen for energy).

Bb, according to microbiologist, Dr. Gary Kaiser, uses Mg for its enzyme reactions.

We need Mg...enough...to make ATP, to control over 350 enzymes, to make HEALTHY antibodies (lyme patients make a lot of damaged antibodies - the "Fab" portion), and to repair mitochondrial damage. This is KNOWN.

It is all documented in my nutshell post. The entire post will overwhelm them...they don't like to read a lot..most don't, so give them info. a little at a time.

My geography is awful. Any chance you can get him admitted to that hospital in Romania?
They CURED lyme patients...once they figured out just how very, very deficient they were in Magnesium.

Mg is an anti-inflammatory!!!

Zinc is tied up in calprotectin in our WBCs. The body is in a "protect" mode. Many OTHER pathogens use zinc to replicate.

Re: Marshall's protocol. I'm in the "other" camp. From my viewpoint, and research, I see altering the body's immune response by blocking TNF alpha is very risky. TNF alpha has many, many benefits which I documented in my updated nutshell post. While those doing thus may FEEL better, are they GETTING better? My goal is to find a cure, not another painkiller.

Bb heads for the mitochondria - the powerhouses - in our cells. The number of mitochondria in cells really varies. Thousands in liver cells, very few in cancer cells, ONE in sperm cells. Since the lyme spirochete impacts the mitochondria, these have to be impacted...and the location where they are made and stored...just a thought.

[This message has been edited by Marnie (edited 11 June 2004).]
 

Bored is still very sick. Inflammation on the other epididymis is still very bad. They are going to operate that away.
He is now on Levaguin (levofloxacin)500mg by oral+ Doxy 200mg iv daily.
Help,

Catherine