After the lumbar MRI showed 2 bulging discs hubby looked around for something to help relieve his back pain. Of course the neurologists said the mildly bulging discs were not causing the pain. Has not been able to walk for exercise much at all since paralytic ileus in early January.
Hubby has had 4 treatments -- chiropractor wants him to have 5 more treatments.
Initial results were somewhat promising -- decreased back pain. However 3rd and 4th treatments have actually caused increased back pain.
Not sure if this is somehow tied into babesia treatment which is ongoing.
4th treatment was on Monday. Today kept having sweats which caused tremors/seizure-like episodes and increased G.I. symptoms -- nausea, vomited once and diarrhea as well. Even had two episodes of muscles frezing up -- this had stopped when resumed quinine.
It almost seems like the LCD treatments cause a babesia flare -- has had flare-up in symptoms in the past from massages.
Each LCD treatment includes either a massage or chiro adjustment or sometimes both.
The thing that has me totally confused is the response to IV heparin. About 85% of the time this will stop the tremors/seizure-like episodes within a couple of minutes -- works better than IV Ativan. But what I really don't understand is why IV heparin decreases hubby's back pain.
The other thing that seems to be helpful in stopping these attacks is an herbal tea -- I mix one dropper of Wormwood tincture with one dropper of Prickly Ash tincture and 1/2 dropper of a Spilanthes combo tincture -- all these herbs should help with babs.
Just finished the 10 day treatment with the Cryptolepsis tincture yesterday and unfortunately it looks like the babs is still around.
Hubby is getting very discouraged and doesn't know whether to continue with the spinal decompression or not. He is terribly afraid that the back pain will lead to worse G.I. symptoms and another paralytic ileus.
Babs treatment started out really well but seems to be bombing out as well. LLMD wants hubby to decrease quinine dose.
Running out of ideas.
Any encouragement or suggestions welcome.
Bea Seibert
Posted by 5dana8 (Member # 7935) on :
hi bea sorry to hear your hubby is going thre so much pain right now
I have heard gentle traction can help bulging discs. I have some in my back now so I can relate to the pain.
I have had gentle traction done to my neck & ot made a huge difference.
hope this helps & he can feel better soon
hang in there Dana
Posted by Jill E. (Member # 9121) on :
Bea,
Do you have Dr. James Schaller's new book on Babesia? He briefly mentions that heparin may inhibit the growth of Babesia. I had also read posts here on Lymenet mentioning some studies on it.
Schaller's book has only about a paragraph or so about it. If you don't have the book, let me know and I will type the paragraph and post it for you in the morning when I'm not so tired. Or if you have a fax number you want to PM to me, I could fax the pages to you.
As I've mentioned to you many times before, I tremor constantly. I have not yet started Babs treatment because my Bartonella is so bad. When the day comes that I start Babs treatment, I will be very curious whether it affects my tremors similarly to how your hubby is affected.
I still haven't started heparin either. I keep asking my LLMDs and other docs to have me tested for hypercoagulation but I'm not getting far with that. I am very intrigued that the heparin is helping your husband's symptoms, at least temporarily.
I can't do chiropractic adjustments, massages or anything along the spine anymore either, even the most gentle of techniques - for me, I think it mobilizes the diseases or toxins or something. I get very sick and toxic from it.
Good luck as always.
Jill
Posted by Truthfinder (Member # 8512) on :
Gosh, Bea - I'm sure you are about at wit's end with the confusing symptoms in your husband's case.
Perhaps this is too simplistic, but maybe the Heparin helps simply because the spine has such poor circulation, in general. I have areas of my lower spine/sacrum that are constantly inflamed, and it's because it is so hard to get inflammation OUT due to poor circulation. Perhaps the Heparin simply helps that process by thinning the blood?
My only other thought is that your hubby is dealing with some "bigger" parasites, like worms or something. I posted about this recently on the another thread. After a couple of experiences by friends lately, I don't have any faith in stool samples for detecting worms AT ALL. Well, I may be totally off base with this, but your hubby's GI issues sure could be from worms.
Sorry, Bea.
Did you get those samples sent off to the F. lab? (Or did I miss that post?)
Tracy
Posted by clairenotes (Member # 10392) on :
Recently, I went to a center called Migun. They offer mechanical massage, where jade balls (feels like rollers) give off far infrared light and move up and down along the spine and legs. Sessions are free, so it was hard to pass up.
But it was fairly strong especially in the area of the lower back and tailbone. After a few sessions I began to have a lot of pain in the sacrum area.
This also happened before when my husband was massaging the area. There was some relief in the beginning, but later, pain.
I am using anti-microbials in the event the injured or inflammed area drew some unfriendly ones, which seemed to help when this happened before. But it did take some time.
I agree that we sometimes have to be careful of massage or bodywork or chiropractic manipulations, etc., when lyme is present. This is not a very forgiving disease.
Edit: Just saw Tracy's reply... I had wondered about those lab tests from Dr. F's office, too.
Claire
Posted by Foggy (Member # 1584) on :
Bea, I've heard of 2 similar systems Vax-D & DRX 9000. I haven't used them but I'm curious if they're effective. They tout good results.
I know they are expensive & not covered by insurance, or at least my co. This bothers me.
Back pain is so hard to decifer. My LLMD said Lyme and co-infecs can cause back pain. He thought this pain would improve with treatment. He also said MRIs don't show pain & some can have "normal" MRI yet have pain. Certaily back pain shooting down the leg can be Sciatica.
Good luck, I hope he finds relief soon.
Posted by seibertneurolyme (Member # 6416) on :
Foggy -- The LCD treatments are covered by hubby's insurance -- Anthem Blue Cross Blue Shield. Total cost for each treatment is around $150 -- includes electric nerve stimulator treatment and heating pad to loosen muscles before using the LCD machine, the LCD treatment, some sort of rolling massage table he lies on after the spinal decompression and then either a chiropractic adjustment or massage.
So as you can see that is a lot of manipulation -- lasts 1 - 1/2 hours total.
Hubby has decided to go for treatment #5 tomorrow. If pain is worse or no better after treatment then he will wait at least a week before next treatment instead of going twice a week.
Still waiting on results from F. lab in Arizona -- supposed to be in the mail.
Hubby had less sweats today so was less symptomatic. Is off Quinine for 10 days now so we will just have to see how it goes.
Spinal xrays show legs to be the same length -- hubby took the lift out of his shoe, but can't tell if he is better or worse with so many things going on.
No easy answers as usual.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Good news for a change. Chiro was less busy than usual and hubby got some of his questions answered.
The first 2 times the machine was set at a different angle (pressure was on a different disc) than the 2nd 2 appointments. Adjusted machine back to original setting and treatment seemed to help without any flare up of symptoms last night.
Also used ultrasound instead of electro-stim and heating pad to loosen muscles before treatment. Skipped the chiro and massage treatments as well.
According to chiro LCD traction machine started at 10 pounds pressure for 30 minutes and goal is to work up to 20 pounds pressure for 30 minutes.
Hubby did have some dry heaves once yesterday and some diarrhea, but neither acted up today. I am still convinced there is some sort of connection between at least some of his G.I. symptoms and his back problems.
Will go for treatment #6 on Monday. Plan to repeat same protocol as used for treatment #5.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Hubby is going for treatment #9 tomorrow.
The LCD treatments have been one of the best treatment decisions we have made since he got sick over 6 years ago. Back pain is virtually gone (mild pain present 10 -15% of the time). Was even able to decrease daily IV Ativan dose from 4 mg to 3.5 mg -- means I only have to get up every 3 1/2 hours instead of every 3 hours. Has stopped all pain meds.
Has even resumed walking 1/2 mile a couple of times a week. The chiro is adding in various physical therapy exercises now and we will decrease appointments from two times a week to once a week for now.
Wish the babs treatment was going as well. The LCD treatments still continue to aggravate babs symptoms. Trying to come up with a new treatment plan.
Bea Seibert
Posted by Cass A (Member # 11134) on :
Dear Bea,
I did a type of that back treatment--Vax D. It certainly helped me a lot, also. I've had a herniated disc, and now a degenerated one in my lower back. I'd had a LOOOONNGGGG history of back trouble, dating to when I was 9 or 10 years old! I do have one leg about 1/4 inch shorter than the other, so wearing a lift helps me.
For the residual stuff, after I'd gotten as far as I could with the Vax-D (confirmed by xray that I actually got some growth in the degenerated disc), I got some Prolo therapy, which really helped the pain level.
I found an inversion table used that cost me about $100, and used that every day or so at home for about 15-20 minutes. One day, I got a big POP in my spine, with radiating release of pain all through my body. Since then, the back thing has been pretty much handled--a twinge now and then
When I over-did exercising and something went out, I got some Bowen treatments (about three total over two months), and now I'm back to no pain in the lower back at all.
Hope the Babs thing gets better! I'm working on that one myself now. I did about 30 days on Artemisinin, and am about to try the 3-day lower end of the malaria dosing of it, as I'm still getting body heat up and cool down over and over.
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