Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I've been getting IV glutathione and other vitamins and my hand numbness went from all day down to 5 times a day which was great.
This week after my IV I had about 2 days where I had drastically reduced hand numbness but then by yesterday night, my hand was so much worse than usual. Like how it was a month ago.
I couldn't move it. It took a ton of effort. It felt heavy and tingling with a tremor or muscle twitch. This has lasted all night and it's still bad today.
Is this ever permanent? Can it be reversed or stopped? I'm scared that it's getting worse again and maybe I should quickly do something?
So far in my treatment, I've kept having symptoms pop up and they don't seem to go away or improve yet. I'm worried the same will happen with this or that it will become permanent or more severe.
I was off antibiotics the last time it was bad like this for liver enzyme issues. Now I had to stop one of them for an allergy but I'm still taking biaxin and tindamax. The tindamax I started last Friday, and I know it can sometimes cause nerve issues. I have two more days until I stop that for a week.
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up for input.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hi Summer,
Have you told your doctor about your increased numbness symptoms? You will want to do that.
I also have severe problems with neuropathy and because of this my doctor has only treated me briefly with tindamax. While I was on it he had me take the coenzymated form of B6 (P-5-P), 1 100mg tablet twice daily, to help prevent worsening of neuropathy.
I don't know if you've had a neuro evaluation yet but that would probably be a good idea too. Your LLMD can refer you to a trusted physician. They can test to find out what is causing the numbness. Make sure that it is not something like a pinched nerve in the shoulder, elbow, or wrist that could be fixed relieving some of your symptoms. You may have already been evaluated, this is just a friendly suggestion.
My neuropathy symptoms stabilized about a month after I started IV Rocephin (with oral antibiotics). These were the symptoms that finally convinced me agree to my doctor's recommendation of IV therapy.
I wish that I could tell you that the neuropathy symptoms have gone away but they have not. They flare with my Lyme symptoms. There are times when they are much worse and times when they are better.
The better times give me hope. More better makes me happy
Hang in there Summer. Talk with your doctor.
Posts: 5237 | From here | Registered: Nov 2007
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So the Gluta IV can help with improving the Liver enzymes test. I had my second one in the last two weeks. Both times it worked really well. I got the best sleep I have had in several years!
Now it only work that well for one night. Also neck pain went away.
So do you think you have a circulation problem? I realize the die off can cause inflamation and that can cause the symptoms also, or may be part of the same.
I went and down loaded Dr R's online book. He is in Seattle and you can PM me if you like. He as other LLMD's say that inflamation could be causing the pain and neuropathy.
I have edema and poor circulation in my legs. So I met with a foot doctor this week and next week I start on a machine that possibly can dramatically improve circulation. I think that will help move the toxins out and reduce my inflamation.
At this point, this is my spectulation however the device is providing significant circulation improvement for diabetics. The doc said they were using another machine but a patient told them about this one and they got it. They have not used the old one since. Doc said he thought it would really help me!
I start the 45 minute treatment on Monday and have 3 appointments scheduled next week.
And it is FDA approved. They have a white paper and this is what they list it can help;
Many Types of Neuropathy (Including Diabetic) Diabetic Ulcers Lesions and Open Wounds Decubitus and Pressure (bedsores), Stasis Ulcers Soft Tissue Injuries Chronic Back and Neck Pain, Whiplash Sport or Work Injuries, Sprains, Strains, Fractures Arthritis and Osteoarthritis Fibromyalgia Parkinsons Disease Multiple Sclerosis Cerebral Palsy
Note this appears to be much more than a Tens Unit or a vastly improved one.
I will let you know how I do next week. Yes I will take a lot of chlorella before and after and drink tons of water.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Thank you for your replies. I have not seen a neurologist because I'm fairly certain there are no lyme-literate ones in the area. I know the neurologist from the area (outside of the office) and he's definitely not Lyme friendly. I'm in a very rural area, so options are limited.
I'm also worried that by going to a neurologist, they will be looking for other things that don't apply to me like MS. I am in my 20's and I was perfectly healthy before Lyme. I am 100% sure that Lyme is causing my problem so I'm worried that by going to another doctor, things will start getting off track. Would they be able to do anything about nerve damage anyway? I figure why go and get more bad news.
The numbness actually started to increase a few weeks ago when I was off everything. I did glutathione IV's which are mixed with other vitamins and it went back down to 5 times per day but then this week it worsened again even though I have still been doing the IV's.
I was actually totally against IV antibiotics at first, but now I feel like I'm getting worse quickly and maybe I should look into it more. However, I know they aren't often covered by insurance and there is no way for me to afford them out of pocket. Even through Infuserve.
I also have a severe phobia of getting a PICC line done at the hospital. I'm not really worried about the procedure, just the person doing it lol. If my doctor could do it, that's one thing, but I have severe trust issues with the area hospital due to a very bad experience.
I read a little about that neurocare machine. I probably do have circulation problems. My hands and feet are often very cold. I think I'd be a little afraid to try the machine though. I have plenty of muscle spasms, so I don't know if I want to stimulate any more LOL.
I too have cold hands and cold feet. My waking temp under the arm is 95. It takes me a long time before I can work up a sweat even in the sauna.
I have the same concern about moving too many toxins around with the NeuroCare device. However I am going to give it a try on Monday and will load up with Chlorella before and after.
Concerning the neurologist, I had the same concerns about him being an extension of the IDSA. But at least I got him to order an MRI. It really is sad, he is a very smart guy with two degrees from Harvard and a bunch of peer award/recognitions but still does not believe in chronic Lyme. However good with the bad right! I got Lymenet.org and 3 docs including an LLMD that are supporting me and my sons. And I am slowly convincing my GP as he sees the various test results and the persciptions we are taking.
Since I have a coinfection of Chylamdia Pneumoniae and the ABX treatment is similar to Lyme that has lowered a lot of my GP's resistence. I also keep all my tests and showed them my high mercury count (now down by 70%), CPN, EBV and CD57 when they start to backpeddle.
So I will let you know what happens next week.
All the Best, MattH
Posts: 607 | From Houston Texas | Registered: Mar 2011
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