I have been treating Lyme and ALL coinfections for 10 months now. Started with zithro, did Mepron/Art. I am currently on Doxy (400 mg), Biaxin, and Plaquenil (I'm 2 months on this now), enzymes, supplements, thyroid...etc.
I am looking for advice on treatment. I've seen slight improvement, but not much. I should mention I was sick 3 years prior to dx. My biggest complaints: overly-hyped up nervous system - the only way I know how to describe it is "plugged in," sort of vibratory (sometimes causes tremors), lots of heart palps (already went through echo, stress test etc. due to my arrhythmias), often dizzy - almost feels like I could seizure though haven't to date (though I think I've had my brain sort of shut down, where I couldn't keep myself awake no matter what - felt totally like a brain malfunction, not just fatigue)...tired of so much neck pain; like most of you the list goes on...I can deal with the numb feet, twitching muscles; it's the other things I mentioned that are just wearing me out and make me feel the worst.
Anyway...do you think orals will ever get me there? I'm just looking for others who can relate to these symptoms and tell me what (hopefully) worked for them. Appreciate any feedback, I'm feeling pretty discouraged. Thanks Loads. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
Hey TS - Gawd, I can *so* relate to your symptoms!!
I was finally diagnosed in Oct '08 after over a year of increasing CNS symptoms such as heart palps, insomnia, anxiety, depression, muscle twitches, numbness in feet, and feeling like I was undulating - a totally revved-up nervous system.
Like you (just saw your post about exercise), I'm an avid trail runner and cyclist, and during exercise is the only time that my CNS seems calm.
I'm only three months into treatment, and am currently on Doxy, Ceftin, and Bactrim, as well as all the usual supplements. I tested positive for lyme and erlichia, and had a bart rash after beginning treatment. As of yet, my CNS symptoms haven't begun to abate; rather they've just been tempered with psych meds (lexapro & klonopin for sleep).
I, too, would love to hear from others who've successfully calmed down their nervous system...
Best of luck, TS -
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Orals can get you there over time, if they are in high enough doses, and in combination with several abx, and if you treat any coinfections, and you add IM bicillin.
It takes alot of patience. I had severe neuro symptoms and after two years of treatment with high-dose orals and almost a year of IM bicillin, I am much better. I am still treating babesia and still treating chronic lyme.
Much of my improvement was in the second year, so hang in there! The first year was toughest, no question.
You can get better! But if you have bad neuro symptoms, it may take more than a few months. My best advice is to educate yourself about the complexities of TBD's, and get the best llmd that you feel you can work with, and stay with them for at least a year or two.
Posts: 2557 | From home | Registered: Aug 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Yes, I can totally relate. Have/had really strong inner vibrations like I am sitting on a motor.
They are much better now. 2 yrs ago I couldn't keep my head up and felt like I had narcolepsy.
I was on oral antibiotics for 3-4yrs and 6 mos IV rocephin. I also had IVIG for 2yrs and did lots of herbs.
I have made the biggest progress with the salt/c protocol.(sea salt) Check out
This is what came pouring out of me and many others. Burgdorfer found filarial worms in the ticks and as an aside found the spirochetes. Does these symptoms sound familiar?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Wow...thanks for input; I don't feel so alone. Sometimes when I read about arthritis symptoms, overwhelming fatigue etc. I feel like I'm dealing with a totally different disease from others. The nervous system junk is the worst for me.
GLM1111, I have entertained the salt/C protocol in the past, but haven't acted on it. My concern for me...as soon as I got sick, my blood pressure went high. I know a lot of Lymies deal with low BP; mine now is on the high side, which I never had in my life, a very sudden onset with the rest of the crud (I'm still exercising, am 5'5" and 115 lbs.). I think it just won't regulate, as I said...mostly high, but I think it also bottoms out too...anyway - the high salt intake freaks me out a little bit due to some BP issues, which I hope resolve in time with tx.
Thanks guys for sharing your experiences and input. 10 months of treating seems like forever when you feel so badly every single day, ugh. TS
Posts: 566 | From West Coast | Registered: May 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi,
I guess my point is that we have to treat for parasites and worms. There has been literature in reference to infection causing high blood pressure.
A friend of mine said his b/p went up when he was on antbiotics. I understand why you would be concerned.
I am not pushing the salt/c, but I would at least try some antiparasitic herbs like Humaworm or Dr.Natura.
These parasites have invaded our bodies and are causing brain parasites. Don't ingnore this.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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As the others, my heart goes out to you!!! I have very advanced Nuero symptoms and it is hard and a bit scary. And so, so frusterating!!
I don't know how much I can help, but to only share my experience. It was over 15yrs. before I was finally dx with Babesia WA-1 and Lyme and the complacations due to them.
I started with IV Rocephin for 14 wks. but had to stop due to my body all of sudden rejecting 2 picc lines. Then was on orals for about a year.
Then I saw my first LLMD and was very excited and hopeful that I would finally get well. Well----Not all LLMD's are created equel!!!! It was not a good experience for my son or myself.
Can I ask if you had any abonormal Tryroid testing or did the Basil Them. testing?? The reason I ask is that although many need to be on Thyroid meds., I found that so many LLMD's just hand them out right from the beginning for several differant reasons.
This is just my personal opinion, but I feel it can be very harmful if your thyroid function is normal. It can and will cause heart palpations, arrythmias, high BP, nervousness and Anxiety. Of course so can Lyme and Co.!!! It's just a thought.
Also something that I learned the hard way even though I know better, but IF you do have a Thyroid problem, it may be a good ideal to try to see an Endocrinologist. Much too often, especially in those with chronic or long term infections, and abnormal Thyroid function has nothing to do with that gland! It is a result of other glands such as the Adrenal, etc....
I am now seeing a wonderful LLMD and WHAT A DIFFERANCE!!!!! I start back on IV the Monday. However he was the ONLY one that found all of the other problems that can stop you from getting better.
IE: Malnutrition, POTS, HPA failure, hypo-pitutarism, heart bundle branch block, several lesions in the brain, liver and kidney problems---on and on. He would not even consider any sort of tx until he and the Endo. could improve some of these issues. If he had off, it probably would have killed me.
Please remember that I have an extremely advanced case. Don't let my history scare you!!!
Also of course the CNS was sooo out of control!!! He put me on siezure meds., Lyrica for the Neuropathy which has helped so much. My feet have not been 'on fire' in over a month!!
When I start my IV, I will be on Ativan 3 x's daily to help keep my CNS for exploding.
Also, what Gael mentioned I just found to be very true!!!! My 14yr. old has Congenital Lyme and he called me into the bathroom to look at his BM. There where red thread appearing thing all through it! My husband also had Lyme and he is passing clear, longer worms!! Me---I haven't looked....LOL!
However I will be looking into the Vit. C/salt protocal as I've heard about it off and on for about 5 yrs. now. My first Dr. used to do it IV for another LLMD and had wonderful results.
Just FYI, when I saw all of these what looks like 'red threads' in my son's stool, I had NO clue what it was. Now after doing much research, I do. I feel so bad that I didn't react faster!
Anyway, just a few ideals to think about. But really, if your LLMD isn't looking into everything, think about a new one.
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
TS, that is weird about the high blood pressure issue - my situation has paralleled yours entirely! I'm exactly your size, a long-time competitive runner, and then 5-6 years ago (maybe when I contracted Lyme?) my blood pressure readings went from low normal to 140/90 on a regular basis.
Also, you mentioned being on thyroid meds. Well, I'm wondering what I should do - my free T3 has been consistently below range for a year now, with normal T4 and TSH. Plus, my body temp is always low (except during daily afternoon fevers, when it hits 98). I'm wondering if I should ask my doc about Wilson's protocol or at least some cytomel. What are you on?
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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posted
Oh I can relate to this post about being reved up.I have had severe neuro lyme,going on 8 years now and very slowly getting better.8 month of IV rocephin is what got me over the hump but i did major sffering before finally getting IV.I brain and nervous system was so wired I thought i was going to go insane,it pushed me to my limits.I couldnt sleep because my brain just wouldnt shut down and when i did sleep even my dreams and nightmares were in high speed.It just never let up and was torturous.Thanks God I found somethings that helped me cope.5htp by douglas labs calmed me down,this is an over the counter supplement but you cant take it if you are on an antidepressent(they both increase seratonin).5htp can upset your stomache a little(not bad)but I take another supllement that works just as well as 5htp if not better and that theanine.Theanine by suntheanine is what you want and 5htp by douglass labs,Ive tried other brands but they arent as good.There is also a product called somnolin that is a combination of 5htp and thenine together but its a little expensive but worked well for me.When i really need a rest from being wired I will take ativan as sparingly as i can but it does work.One last things ive just recently started to do right before bed is smoke a little pot,ya i havent done that since a teen but now it is strictly medicinal.I dont like to do it at all but sleep is more important to my health.I take only a couple of hits right before I lay down,if i take to much than im paranoid and freakin out.I in no way am pushing illegal drugs,i just know what torture this disease can do and if a tiny amount of pot helps than I do what I have to do to cope.Absolutely stay away from sugars and caffeine.If you eat an apple you will notice your body is more wired in about 5 minutes after you eat the apple.If you try the 5htp or the theanine,the theanine is my choice,it starts working about 15 minutes after you take it and lasts a few hours.Ive never had any side effects except a slight upset stomache on 5htp.Its an absolutely horrible thing to be wired and cant calm it down.i so hope i helped you.Hang in there,some day there will be better treatment and compassion.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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You are one of many who have tried and is using Pot as part of your tx.!!!! As one PM'ed me when I asked about it, he said, " It is the only thing that has helped with his pain, spasms and relaxes him enough to rest/sleep!" He also said the same thing you did about not reccomended anything illegal; just sharing what as worked for him and he also has tried Xanax, Ativan, etc... He also said, " It's kind of funny that what I used to do as a teenager for fun and then stopped, I now use only for medical resons!"
Just thought it was interesting that I've started hearing this a lot!!????? Hhmmmmm.
A FEW HAVE MENTIONED THERE B/P GOING HIGHER WHEN BECOMING ILL, AND BOTH SEEM TO HAVE THYROID TROUBLE!!!
PLEASE try to see a good Endocrinologist!!!!! This disease can cause so many endocrine problems that is so often overlooked! You can Google 'Endocrine system' and keep looking and reading. I think you'll be surprised at the # of issues possable!!!!
I pray for all of you!!! I'm there along side of y'all and know exactly how you feel!!!!
Posts: 351 | From Georgia | Registered: Feb 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I can so relate to the reved up feeling and the vibrational feeling. Hard to explain but I totally get it.
Yes I think you can get better on orals. I know people that have and have been symptom free for years. It just takes time.
I don't neccessarily beleive it takes huge doses either. I am more into slow and steady. Treating for Babesia was the thing that helped me the most so far.
Sometimes I think improvement is just around the corner and we get impatient which is very understandable.
If you have a good LLMD that is willing to do his part, then just hang in there. If not look for someone who is willing to help you through this.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thanks so much, everyone, for your responses - comforting (in some sick way?!) to hear that others are experiencing - and beating - the CNS aspects of this illness.
Tabers, That's terrific that you've been able to beat these horrid symptoms! My symptoms are precisely the ones you describe. I went from running 40-70 mpw for 20 years to nearly zero this summer, and with similar troubles with stairs. I'm now able to run a few miles, do spin classes and lift a few days/week, but am soooo much slower (but, I'm also getting older, 40+).
I'm glad to hear that your blood pressure stabilized - it's an unnerving symptom when you've always exercised and taken care of yourself.
I haven't had a blood smear for a BLO, but had a bartonella-like rash on my leg after several weeks on ceftin and doxy, and so my LLMD added bactrim to the mix (he says he tries bactrim before rifamptin or levaquin for bart). The combo seems to be helping a little, but I also think Lexapro is relaxing my nervous system a bit.
Well, again, thanks to all for sharing!
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I didn't read everyone's replies but I had all your symptoms including the narcoleptic-like episodes and feeling like on the verge of a seizure. My BP tends to be low though.
I've been treating for just over a year and have only done orals and only one at a time and my neuro symptoms have improved a great deal. Here's what I've done so far...
Doxycycline 6 wks. Ceftin 8 wks. Zithromax 10 wks. Biaxin and Plaquenil 6 mos. Amoxicillin 3 wks. Minocycline (just started 2 days ago)
I am still quite symptomatic but much much better than I was. I am going to get a second opinion on treatment options from a new LLMD at the end of this month b/c of my dr.'s limited protocol. She has gotten me a lot better but think it may be time to explore other treatment options.
I hope you feel better soon!!!
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Thanks a ton for responses, like landerss said...comforting in a sick (literally) sort of way.
I will definitely talk to my LLMD at my appt on Friday re: parasites and addressing that, thanks.
Yes, maybe I should see an endo...I am on 60 mgs. of Armour Thyroid right now. My initial screening was low, therefore the rx. She has checked it a couple of times and describes it as "normal low" at this point.
I also had a saliva test to check adrenals. I was on very low hyrdocortisone for a short time, but didn't notice much change, so stopped taking it. I don't have my saliva test handy right now, but remember one abnormal reading - it listed various causes for why the reading might be this way...one of the reasons was overactivity of the sympathetic nervous system...I feel like that's me, totally. Uncomfortably revved up and buzzing ALL THE TIME, hate it - like many of you it sounds like, sorry you're dealing with this too, ugh.
Landerss...our stories sound so similar. I can't remember if you tested for co-infections? I hope you see progress with tx. Please feel free to PM me anytime to compare symptoms, progress, tx protocol etc. It appears I'm in this for the long haul, like most of us. Through Igenex I was + Lyme, Bart, Babs (Ducani WA - 1) and Ehrlichia. I know someone asked about a blood smear for a BLO. I tested with Frye Labs and was told + for mycoplasma; I think that test is a smear? I also have read some threads about BLO etc. through this lab; that's where I'm at with all of the TBD testing anyway.
Thanks again EVERYONE for responding to my plea, I have carefully read all responses and plan on acting on some of the valuable suggestions. You guys are awesome! TS
Posts: 566 | From West Coast | Registered: May 2008
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