My wife and her brother both exhibit soem serious neurological symptoms but none involves arthritis or pain. Their mother was diagnosed to have MS and died from it about 7 years ago after losing all physical and mental functions for some 7 or 8 years...
My wife and her brother are both seeing two separate llmds. At least one of the llmd is saying she has done all she could and it's time for them to see Dr. K in CT and IV being used. She added that there is definitely neurological components to them, and Lyme probably is just aggrivating the symtoms.
Is it worth it to continue and pursuing the treatment for Lyme? I am confused, and discouraged...
Posts: 822 | From midwest | Registered: Apr 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Absolutely possible to be infected without joint pain. absolutely!!!
Keep on keeping on. IV is said to get to the neuro symptoms much better in some cases...seeing that your wife and her brother have not made progress on orals....suggest that they give IV's a shot.
YES! it is worth it to continue. good luck
Posts: 3975 | From usa | Registered: Aug 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had undiagnosed lyme disease for at least 10 years. I did not have any arthritis all of that time.
Once I got my positive lyme test and got to a lyme doc, I found out I also had babs and bart.
Not everyone has arthritis who has lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you both. It's very comforting to hear from you're saying that.
How bad of condition were you in before your treatment and how well are you now? Both my wife and her brother are so bad now they could hardly walk, or even stand.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
Absolutely, yes. There are an estimated 200 strains of lyme disease in the U.S.
Just like some don't present with a rash, some don't have arthritic sx, etc.
I have had bizarre joint "episodes" ~ felt like "overstretched" ligament/tendon/connective tissue in my hip joints in particular. and the veins in my thumbs sometimes swell randomly causing the joint to ache.
But: I would never classify myself as being arthritic. The strain I have definitely favors the CNS/ANS. I suppose I would look more like I have MS or sometimes ALS.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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posted
I have all CNS issues- MS symptoms so far no lesions and no MS diagnosis--
I've not done abx treatment yet- I was functional in November (but declining)-a few weeks of my first drugs sent me in a serious downward spiral i've yet to recover from. Herbs did it 2 years ago as well.
I'm looking for MS type stories how have recovered on treatment or at least reversed progession/stopped progression.
I've not found any full recovery stories/not found alot to talk to with MS neuro lyme-- a few on this board are better with treatment/still on abx.
Posts: 200 | From New England | Registered: Dec 2009
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posted
mine was mostly neuro......no arthritis ......good luck......
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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Go for IV! My husband is Neuro lyme, I am arthritic lyme. I think it depends on the strain or maybe what weak link your body has.
My husband refuses to treat. I wish he wouldn't do that, but I can't force him. I made him see the LLMD and if he refuses, that is on him. But definitely, if you can afford to treat, please, keep trying.
We have PM'd before, we were seeing the same doctor. I just want you to know, I have starting seeing another doctor and I started IV. I have only done it for 4 days, but I am going to give it a go before I give up.
Good Luck to you!!! Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had extreme muscle weakness. So, I dreaded rising up from a chair. I could only stand for about 2 minutes, walk about 2 blocks. My legs shook like jello if I tried to walk down stairs.
I did everything by sheer will power.
I couldn't hold my mouth open to have my teeth cleaned. I couldn't talk on the phone for more than 30 seconds because it would make my arm hurt. Even turning pages of a newspaper hurt my arm muscle.
I had to sit down and rest twice while getting ready for work. I missed a lot of work. Some days could only work 2 hours, some more. It was a desk job and boss knew I was a good worker normally.
I also had name block and word finding problems and memory problems. I told my gyn I thought I had Alzheimer's. She laughed, but I wasn't laughing.
Other symptoms were bilateral facial drooping for 3 1/2 years, trigeminal neuralgia, lots of burning jaw pain that was unbearable (felt like liquid fire pouring down my jaw). Lived on narcotic pain killers for this about 4 months.
Also, felt like I was being stabbed by thousands of pins all over upper body, had the sensation of moving patches of sunburn when I laid down to sleep, couldn't sleep, horrendous fatigue, lots of headaches, lots of stiff necks, episodes of terrible abdominal pain, false menopause, dry mouth, dry eye, episodes of sound sensitivity, cold sensitivity, one episode of gaps in the visual field.
Some derealization, and one major central nervous system event in which I felt like I was going far, far away and could not move, walk, talk, or think for hours.
I completed my lyme treatment 5 years ago and I am still symptom-free, enjoying my life. Every single symptom went away and I am as normal as I was before this hell-hole of a disease.
I had lyme, babesiosis, and bartonella. I went undiagnosed for at least 10 years. I got 2 years of lousy lyme treatment, then 1 year of Burrascano type treatment and I was finished.
My false menopause reversed, dry eye and dry mouth, etc. I am totally well!!!! Full recovery!!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Wow...thank you tons. I really need all your words and wisdom.
f13 - got your PM and will PM back.
Shalome - yes, we have PM'ed before. I am glad that you switched a doctor and now you're starting the IV. How are your eyes?
TF - I am most grateful for your telling me the story. She has a lot of symptoms that you mentioned, almost to a Tee. And the fact that you are recovered from it gives me a great hope. I too think she needs IV, and I think her doctor is working up to that. I hope that Dr. R will be able to pinpoint an aggressive protocol for her when we see him hopefully in June. I am nervous but I believe that's the way to do it. Thank you so much!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
100% yes. quite common as lyme likes brain tissue
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I recovered on oral antibiotics only. Doc thought at first that I would need IM, etc. but it turned out to be unnecessary.
Will wait to hear your success story!
Posts: 9931 | From Maryland | Registered: Dec 2007
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How do you define the bad treatment over the real one. I am still confused by the term of "Burrascano type of treatment". Does it mean to follow the guiideline to a Tee? Her llmd seems to suggest that he is familiar with the guide, but thinks that every patient deserves a personal plan. It sounds good but I am also unsure.
Thank you, Tracy. Guess brain is yummy. Posts: 822 | From midwest | Registered: Apr 2009
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posted
TF- what was your treatment exactly that turned the corner? did you have horrile herxing/get alot worse before better? Did you have any numbness, twitching or jerking? Were you homebound? Was your doc dr. s? can you give us more detail- thanks so much for your story.
Posts: 200 | From New England | Registered: Dec 2009
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posted
14 years undiagnosed lyme but no pain until 2 years ago. All neuro symptoms, last September went to see Lyme doctor, did MRI showing multiple lesions, he suggested MS.
Have seen two neuro's and both say it is not MS but have seen it before - they don't know what it is so no treatment:)
I have been on IV now for about 6 weeks and it is kicking my central nervous system's butt.
Am starting to notice improvements in sensory, fine motor skills, fatigue and some in cognitive issues. So yes go for it.
regards maps
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A: All neurological, no arthritis, possible?
Absolutely. Neuroborreliosis (neurolyme). Sorry. (And it can also change over time. Adrenal and cardiac function will likely be affected for any kind of lyme, though as when lyme affects the brain, it usually has a body-wide effect on nerve tissue.
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Have mostly neuro lyme. Some joint pain, not much, but I'm on iv and it brings out everything, good and bad. Good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I hear everyone talking about IV....I wish my doctor believed in IV treatment. She said she has never had luck with her patients using IV treatments.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Like so many others, I wish I had access to IV treatment.
Unfortunately, I do not have Access: the money and have an HMO, need I say more? 4 wks of it isn't even in reach. and as my last LLMD said, I have such neuro involvement that I obviously need it, but there it is.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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maps - Thank you for your encouraging words and good luck with the treatment. It sounds like you are on the right track now.
keebler - As always, thanks for the wisdom, and all the links to the good readings.
Posts: 822 | From midwest | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
wtl, you asked how I define "bad" lyme treatment and "good" lyme treatment.
Good lyme treatment follows the Burrascano guidelines. Burrascano allows many different meds to be used. So, it is not a one-size-fits-all approach by any means. Since so many meds can be used to treat lyme, the doctor can eliminate those the patient is allergic to, has bad reactions to, etc.
Don't buy this baloney lots of doctors like to say that they want to tailor the treatment to the patient. If insulin treats tough diabetes cases, and all the doctors are giving insulin to their daibetic patients with sky high blood sugar readings, I guess they are not tailoring the treatment to the patient, huh?
There are many drugs to choose from with lyme, and many possible combinations of drugs. But, for bart, Burrascano tells the best treatment. For babesiosis, again, he tells the best treatment.
That's what I mean. Follow what Burrascano has said is the best treatment.
In addition, follow the Burrascano required supplements. All lymies need magnesium, for example. So, require that. You don't have to "tailor that to the patient." Same for CoQ10. Don't let the doctor make excuses for this stuff.
Same with probiotics. Same with recommending drinking kefir and eating yogurt and low carb diet. This is standard treatment when on high dose antibiotics to avoid yeast.
The exercise requirement in Burrascano is a must in my opinion. One hour of weight lifting every other day (or longer rest in between if needed). Do NOT exercise every day, do not do aerobic exercise. Read the rationale in Burrascano for why the exercise program seems to work.
A few months into therapy, my lyme doc told me that I would NEVER get rid of lyme if I did not do the exercise requirement. That's what a good Burrascano doc will tell every patient. No need to tailor this to the patient.
This helps boost the immune system, drive the antibiotics further into muscles, etc. Read it in Burrascano.
Here is a brief summary of the major points in Burrascano:
You must attack both the regular and cyst form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babs is suspected, and require adherence to rules such as low carb diet, no alcohol, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
My 2 years of bad treatment can be described this way:
I stayed on high-dose amoxicillin (with probinecid) for 2 years. I was never tested for coinfections. Coinfections were never mentioned. I was never treated for coinfections. The meds were never changed in 2 years. When I got a yeast infection, the doctor did not recognize it for what it was and started me on various meds for irritable bowel. Finally, based on Burrascano, I told the doc I thought it was yeast and asked for diflucan and he gave it to me. I suffered for 3 months with continual abdominal pain and bloating thanks to this doc's lack of knowledge. And, this was a doctor given to me by a lyme support group leader. I waited 3 months to see this guy.
Any time I stopped the amoxi, within 2 weeks I was just as sick as I ever was--in bed, virtually out of my mind. So, this lousy lyme doctor said to me, "Well, maybe you are just one of those people who will have to stay on meds the rest of your life."
That's when I made the hard decision to find another lyme doctor--one who followed Burrascano's lyme treatment guidelines.
The Burrascano type doc said he got all my previous lyme doctor's patients. (Imagine that!) He said my previous treatment had turned all my lyme into the cyst form. Therefore, he gave me flagyl 250 mg 3 times per day and zithromax. When the zith gave me hives, we had to change that to the high dose amoxicillin with probinecid.
I had my first herx with the Burrascano doctor on the amoxi and flagyl. It was mild thanks to my doc who first had me go on diflucan for a week, stop all meds for a week, and begin eating lemons and drinking lots of water and eating a low carb diet.
My good lyme doc tells his patients that by changing their diet alone, they can expect a 30 to 40% improvement in symptoms. And, I have had people tell me that they saw the improvement in a week!
They say it is best not to give treatment details on the public board. So, I will not go further into my treatment here. But, hopefully, this example will show you the difference between good and bad treatment.
The Burrascano doc tested me for coinfections through Igenex and treated me for babs and bart since I tested positive for them.
All together, the Burrascano type treatment only took 1 year and I was done with all 3 diseases.
Treatment does not have to go on year after year for most of us. At least, that has been my experience and the experience of all of my friends who have had lyme, babs, and bart here in Maryland. Most of my friends got better in 1 year also by going to the Burrascano type doctors I recommend. Two took 2 to 2 1/2 years and they were women with fibromyalgia diagnoses for at least 20 years. Not bad, huh?
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF - I am very grateful of the information you have provided here. I can't say enough how much I appreciate your thoughts in guiding me through this difficult time. I will keep in touch once she gets a chance to see Dr. R. I think what you said makes a lot of sense. Thanks.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
Thank you for your post, TF. This gives me more hope. Sure would like to know the entirety of your protocol, though. I'm one of those women with diagnosed "fibromyalgia" for at least 15 years.
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Marrit, I'll send you my protocol.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
While at it, how 'bout sending it to me too. I am 37 and have been diagnosed with FM since I was 17 years old!!!
Thanks!!
Posts: 893 | From Florida | Registered: Dec 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Done.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here are a few specifics about what treatment with a Burrascano type doctor would look like in the first year, for those of you who are still a little confused about what Burrascano type treatment would look like.
If the patient has not already tested positive for lyme, babs, and bart, the doc will test for all 3 of these diseases through Igenex at the first appt.
Treatment will be based on the patient's symptoms, not the test results.
For the first 2 or 3 months, the doc will treat the lyme disease. Then, the doc will add in treatment for the bart or babs. Whichever one is causing the patient the most problems is the one the doc will go after next.
After so many months of this, the doc will go after the remaining coinfection.
If bart, the doc will use levaquin as that is the Burrascano recommendation. If babs, Mepron and zith and add in pulsed artimesinin after a few months.
(This all assumes the patient is able to take these particular meds--no allergies, etc.)
The doc may or may not continue to treat lyme this entire time. The doc is continually looking for signs of yeast and treating it if it crops up.
There is no interruption in medications unless liver tests or something like that require it.
If necessary, after the babs and bart have been treated, the doc will finish off lyme treatment. All of the 3 main diseases are addressed in the first year of treatment.
Lyme patients often do not begin to feel better until the lyme and the worst coinfection have been treated. Some won't feel better until lyme, babs, and bart have all been treated.
My main purpose is to show how quickly the Burrascano doc begins treating all 3 of these diseases. They don't spend a year treating lyme and then move on to treat a coinfection. That is my main point.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I am glad you clarify this, TF. I am pretty sure many, myself included, appreciate this information.
Posts: 822 | From midwest | Registered: Apr 2009
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