posted
I'm asking on behalf of my husband who has most likely had Lyme for about 45 years and was initially diagnosed in 2005 with MS after the progression really revved up.
Before 2005, he just tolerated decades of the increasing urinary urgency, bothersome balance problems, restless legs, ED, clumsiness, sciatic pain, foot drop, declining cognitive abilities, and fatigue.
I've been reading this forum for several months now, but it seems that most of the Lymies here have problems that are more rheumatological in nature with a lesser degree of neuro problems.
I would like to hear from those who have received successful treatment who mostly have the more severe type of neuro problems (but not the psych type) and who have had Lyme a LONG, LONG time.
Please help. I'm considering a revision of plans for future treatment in the face of finite resources.
Thanks, Joyce (cypriane~cpnhelp.org)
-------------------- Dallas caregiver for husband Steve who has Bb, Cpn, Mpn, EBV, CMV, other Herpes family viruses Posts: 51 | From Dallas, TX | Registered: May 2008
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posted
I was also diagnosed with MS (primary progressive) from the Mayo Clinic in Jan 08. All my symptoms started out slowly and progressively gotten worse (over a course of 3 years).
All my symptoms are neuro. I have foot drop, right leg weakness, right arm weakness, ED, urinary problems, neck pain, etc.
I found a LLMD that diagnosed me with Lyme in March 08. My CD-57 level was 16 (normal is above 60).
I started treatment with IV rocephin & IV Levaquin and took them for 7 months. I did notice improvements after 1 1/2 months but started to decline until Oct 08 (I could barely walk across the street and thought my next step was to a wheel chair).
I changed doctors and have started intramuscular streptomycin and plaquenil. I have stopped the decline and have seen big improvement in 4 weeks. Treatment with streptomycin is 6 to 10 weeks.
Both LLMD's have said it is definitely Lyme not MS!!!
Posts: 15 | From El Paso, Texas | Registered: Jul 2008
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posted
My neuro symptoms also ended up gettng me the MS dx. Numbness, tingling, vertigo, vision loss, cognitive issues, memory trouble. Trouble swallowing and talking. Severe fatigue.
It wasn't until after I started on abx for lyme did I start to have the joint pain.
Combination therapy (all orals so far) and high doses have been working, but gradually. When you are sick for a long time without tx it becomes even more complex to treat.
Especially when there are coinfections involved and the tests are false neg.
One of our daughters started to have some of my early "MS-like" symptoms. She became fatigued, was having vision distrubances and her legs became numb and would give out from under her. If I was less informed at the time she would have ended up at a neurologist. I often wonder if she would be living with an MS dx now too. Luckily I had been already re-dx with lyme and had her tested, she was pos for lyme and bart. She has never had joint pain or headaches. It affects us all so differently, even within a family.
Good luck.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
I have had very slowly progressive lyme--certainly for 30 years, probably 40, and possibly longer than that. It's been remitting/relapsing and started with crushing fatigue, then insomnia,cognitive issues, memory lapses, lightheadedness, brain fog, balance problems, restless legs and myofacsial pain.
My treatment was one year of combination, high dose oral ABX, switching the meds every 6 months. After a year, I am now switching 2 herbs: Samento and Cumanda.
When I first started treatment, I was about 20% of my normal, practically bedridden. My main die-off symptoms have been pain and fatigue, although I had a lot of chill/feverish sweats cycling at first.
I didn't see much improvement for the entire first year, and then I turned the corner and really made quick progress--I got up to 80% within a month or 2.
Then SAD set in with the shorter days of winter, and I'm now down around 50-60% until the days start getting longer.
I am herxing while on Samento and Cumanda, so I feel they are being effective. I believe the high dose ABX treatment knocked the load down, and am glad I stuck with it. It looks like I may finish out my treatment with herbs. I will probably always take herbs to prevent relapses.
I've always had a hard time, health-wise, in the short days of early winter, but I have a feeling this next year will be great. I have good days even now.
It will be interesting to see if there's any permanent damage. I know some of the memory loss is gone forever, but I can live with that. I am getting confident that my energy levels will reach a satisfying state, because I've already had some days of good energy.
I guess what I wonder about is the insomnia and pain. I still need help for those 2 symptoms.
My guess is that the pain will go away, because when I was doing well, the pain levels went down quite a bit.
I wonder if the insomnia will be ongoing, since it hasn't gotten much better with treatment.
Hope you have success with your treatment plan.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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posted
Thanks for these terrific responses---this is just the sort of information I've been hoping for.
Hmmm! Streptomycin...haven't run in to that one before.
Keep'em coming...I know I'm not the only one looking for treatment information for this sub-set.
Thanks again, Joyce
-------------------- Dallas caregiver for husband Steve who has Bb, Cpn, Mpn, EBV, CMV, other Herpes family viruses Posts: 51 | From Dallas, TX | Registered: May 2008
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I have not been infected as long, about 3 years prior to diagnosis...but, my symptoms are completely neuro and I have been sick, sick, sick. I have Lyme and ALL co-infections. I have horrible neck pain, pretty much head to toe neuropathy, dizziness, balance issues, muscle twitching, weakness, tremors...and more.
I have been on orals for 8 months. My new LLMD believes in trying certain meds for about 2 months, if I am status quo, she changes it up. She believes it will take trial and error to get the right combo that works for me. Mind you, I have ALL co-infections as well which complicates things.
My improvement is painfully slow, to the point that, on my "bad days," I wonder if there is any improvement at all. Looking at the big picture of where I was 8 months ago, I am better, just far from well. I remain hopeful that I will get there one day...patience I guess. I hope your husband has success with his protocol. It is a long, slow road...but we can only hope that it will be successful in the end. He just needs to know it is, unfortunately, a very slow process which often involves trial and error with various meds/supps. Good luck. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
I thought I would throw my 2 cents worth in here, even though I just started having noticeable symptoms about a year ago.
I have the brain lesions, hyper-reflexes and O-banding in CSF (just 1). Never diagnosed w/MS, but had a few doctor tell me that they thought that I had it.
I have noticed a big improvement since starting heparin, especially since my dose just increased. I immediately felt my face "come back to life" on the left side (that has been numb for a year). I also take the boluoke.
I have also seen such an improvement on my pressure headaches/migraines since starting alpha lipoic acid and N-acetyl cysteine. I initially just took them in the morning, and started noticing that my head would hurt at night. So, I now take the ALA 600mg in the am and 400mg in the pm. I feel like it gives me extra energy also.
I have only been on oral antibiotics so far.
I am so glad I didn't listen to all of the neurologists, they were just waiting for me to keep getting worse so they could misdiagnose me!!
posted
Thanks again to all commenters...big help, lots to consider, Joyce
-------------------- Dallas caregiver for husband Steve who has Bb, Cpn, Mpn, EBV, CMV, other Herpes family viruses Posts: 51 | From Dallas, TX | Registered: May 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
All symptoms of LD are neurological in nature. Our pain is neurological. It's our brain sending us the wrong signal. I would imagine that a good deal of us have balance problems and many other symptoms that you consider neuro.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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bettyg
Unregistered
posted
joyce,
don't know if you'd read this in my newbie package link below,
"Everything Psychiatrists Need to Know About LD" (gives lots of neurological info). By Robert C. Bransfield, MD
Neuropsychiatric Disorders By Robert C. Bransfield, MD NOTE: The above neuro info by Dr. Bransfield is OUTSTANDING; so I want folks to know about neuro problems promptly! It is NOT in area where it could have gone!! Betty
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