Sanoviv Clinic in Mexico

Thinking of you and praying for complete recovery!

I will absolutely keep everyone posted on mine and my daughter's treatment at St George. We leave January 6 so still a few weeks to go.

Thank you everyone!

So, hasn't went well since last update.

They definitely cannot due the hyperthermia due to the risk. Because of the look of the lesion and my past experiences with migraines, they suspect Lyme is taking a back seat to something else. They suspect the main culprit being either a parasitic infection or TB.

Had the spinal tap last Friday. I thought it went well directly afterwards, but I have been having headaches, neck and spine pain since. Sometimes, it's so debilitating that I cannot get out of bed. They have been doing neuro therapy on me every other day. It's where they inject procaine into trigger spots along my spine. It helps for a little bit. But, then the headache comes back with a vengeance about a day later. The only thing that relieves it is laying flat on my back. This is causing a major dilemna as I'm trying to fly back home and wait for the test results from the spinal tap there. But, there is no way I'm flying with this complication going on. Hoping it resolves quickly.

Whatever the result, I will have to be treated in the states. I have decided to seek treatment at a facility near to me. I have read mixed reviews of the doctor there. He is an integrative doctor who has worked with, and collaborates with Dr J in DC. I called them and found that the price of their IV treatment is less that half the price of Dr Js. At this point, I have to take this route.. They also treat parasitic infections and TB if either of those come back positive.

Either way, even though I cannot receive hyperthermia here in Mexico, I strongly recommend this place for those seeking this type of therapy. They are very thorough. The treatment has been working well for the Lyme patients that are here and doing it. The food is clean. The facility is probably the cleanest and most well run facility I have even been to.

An interesting observation.... I was receiving an IV one night and asked the nurse to see that tag that was on the bottle. It was called PPN Lyme. First ingredient was DMSO.

Also, my CD57 came back super high. Over 500. Means my immune system is working pretty hard and I am not in a chronic disease state. It's good. But, just shows that my body is definitely fighting something.

Hopefully I can get home soon. I miss my family terribly at this point.

Since your having headaches after the spinal tap be sure that some of your spinal fluid is not leaking still from the procedure. Especially since you say you have to stay laying down.

I had this happen to me from a spinal implant years ago, headaches, nausea(I know you didn't mention that ) but I could not stand up had to crawl and keep head down.


Just ask and be sure don't want you to suffer anymore.

Take care, Jo

Hoagie-

Thanks for the update. It's fantastic that you have been so well cared for! And I'm sure you already looking into possibly having a blood patch to eliminate the spinal headaches. No fun at all! I'm so sorry you are dealing with that on top of everything else you are dealing with!! Keep up posted!

UPDATE

I'm home now. All the tests are not back yet, but I am strongly suspecting a tumor.

I have suffered optical migraines since I was a teen. But, within the last year or so, they have become more frequent. Maybe the Lyme is exacerbating the issue. I don't know. Unfortunately, I have never had a brain scan of any sort until this past August. So, who knows. We are still waiting for tests to come back for fungal, parasite, and lyme infection in the CSF. So, far, the tests that have come back are good for the fluid. That is when my doc started suspecting that the lesion may be a benign tumor. Benign is good. However, the midbrain is not. I have read a bunch of studies regarding midbrain tumors. It can be challenging even identifying if it is a tumor in that location. Fortunately, of all the places in the brainstem, the mesacephalon (midbrain) is the most workable area of the brainstem for tumor removal. Still, it has it's challenges and risks.

They also are running another Lyme panel through Immunoscience. According to my doctor, this lab is the best around. Even better than Igenex? So, I did some research on the lab, and they seem to catch things Igenex did not.

As, of now, I plan on seeing a neurosurgeon while I wait for the rest of my test results to see what else can be done to determine if the lesion is a tumor or not.

So, while I was not able to get the hyperthermia, the trip was a good thing. Had I not went to Mexico, I may have started IV treatment with Dr J.

Hoagie,

Oh my, that's always a scary word, but answers are good and then you can treat it effectively and get all this behind you. I'm glad your trip was beneficial overall. I'll keep looking for updates. Welcome home!

Hoagie said...
Here is some info about Immunoscience tests. I did the panel B.

http://www.immunoscienceslab.com/Lyme%20Trifold/TriFold%202010%20Pgr.pdf

Hoagie - is it a LLMD recommending that lab for testing?

I've not heard of it....you do want a lab that specializes in tick-borne disease testing.


Please keep us posted....I'm hoping that it isn't a tumor...and 'just' lyme causing all this.

Hi XST2Love - welcome to our community .

Are you currently in treatment for Lyme disease?

We encourage all new members to look through the information in the thread:”New to Lyme...Start Here!”

Please feel free to start a new thread and share your ‘story’ with us.

sheepla - This is so very tragic....so sad.

I am so sorry your sister has been declining so quickly.

Your family is very fortunate to have a generous friend who can afford the care Kelly needs through the night.

My thoughts and prayers are with you.